HIV and AIDS in the United Kingdom - Parliament UK

SELECT COMMITTEE ON HIV AND AIDS IN THE UNITED KINGDOM HIV and AIDS in the United Kingdom Written Evidence from witnesses N-Z

Contents Memorandum by NAM (HAUK 24) ....................................................................................................... 3  Memorandum by the National African HIV Prevention (NAHIP) Programme (HAUK 59) ...... 9  Supplementary Memorandum by the National African HIV Prevention (NAHIP) Programme (HAUK 102) .............................................................................................................................................. 18  Memorandum by NAT (the National AIDS Trust) (HAUK 47) .................................................... 33  Memorandum by the National HIV Nurses Association (NHIVNA) (HAUK 52) .................... 56  Supplementary Memorandum by Nathaniel Ault, Chair, National HIV Nurses Association (HAUK 88) ................................................................................................................................................ 62  Memorandum by National Study of HIV in Pregnancy and Childhood (NSHPC) (HAUK 30) ...................................................................................................................................................................... 64  Memorandum by Naz Project London (HAUK 3) ........................................................................... 69  Letter from the North East London HIV and Sexual Health Clinical Network (NELNET) (HAUK 6)................................................................................................................................................... 74  Memorandum by the Personal, Social, Health and Economic Education (PSHE) Association (HAUK 86) ................................................................................................................................................ 80  Memorandum by Positively UK (HAUK 37) ...................................................................................... 86  Supplementary Memorandum by Silvia Petretti, Community Development Manager, Positively UK (HAUK 79) ...................................................................................................................... 93  Memorandum by Public Health, NHS Lambeth and Sexual Health Commissioning, LSL Alliance (HAUK 9) ................................................................................................................................... 95  Memorandum by Ruth Hutt, Consultant in Public Health, NHS Lewisham (HAUK 31) ..... 101  Memorandum by the Rehabilitation and HIV Association (HAUK 40) ..................................... 106  Memorandum by Royal College of GPs Sex, Drugs and HIV Group (HAUK 54) .................. 110  Memorandum by the Royal College of Nursing (HAUK 35) ....................................................... 113  Letter from Dr Paul Lister, Consultant HIV Physician, St George’s Healthcare Trust (HAUK 32) .............................................................................................................................................. 120  Memorandum by the Scottish Government (HAUK 62) .............................................................. 123  Memorandum by the Sex Education Forum (HAUK 49) .............................................................. 129  Supplementary Memorandum by the Sex Education Forum (HAUK 91) ................................. 137  Memorandum by Sexual Health In Practice (SHIP) Birmingham (HAUK 7) ............................. 139  Memorandum by Shield South Yorkshire HIV Support Group (HAUK 26) ............................ 148  Memorandum by Shika Tamaa Support Services (STaSS), Milton Keynes (HAUK 4) ............ 154 

Memorandum by Sigma Research and Department for Social and Environmental Health Research (SEHR), London School of Hygiene and Tropical Medicine (HAUK 27)................. 158  Memorandum by South West London HIV and Sexual Health Network (SWAGNET) (HAUK 60) .............................................................................................................................................. 164  Memorandum by NHS South West, Office for Sexual Health in the South West (HAUK 85) .................................................................................................................................................................... 168  Supplementary Memorandum by NHS South West, Office for Sexual Health in the South West (HAUK 100)................................................................................................................................. 175  Memorandum by Status (HAUK 33) ................................................................................................. 180  Memorandum by Summit House Ltd, Paul Sheenan, PCT Sexual Health Commissioner and Diane McNulty, PCT Sexual Health Commissioner (HAUK 78) ................................................ 191  Memorandum by Tcell (HAUK 43).................................................................................................... 197  Memorandum by Terrence Higgins Trust (HAUK 64) ................................................................. 206  Supplementary Memorandum by the Terrence Higgins Trust (HAUK 98) .............................. 227  Memorandum by the Time2Know Partnership (HAUK 16) ........................................................ 230  Memorandum by Tuke Institute (HAUK 45)................................................................................... 235  Letter from the UK Border Agency (HAUK 96) ............................................................................ 248  Memorandum by Professor Jonathan Weber, Imperial College London (HAUK 71) ........... 251  Letter from Wellcome Trust (HAUK 28) ........................................................................................ 254  Letter from Dr Chris Wood MRCP, Consultant HIV Physician, North Middlesex University Hospital (HAUK 44) .............................................................................................................................. 256 

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Memorandum by NAM (HAUK 24)

Memorandum by NAM (HAUK 24) Submitted by: Keith Alcorn, Senior Editor, NAM on behalf of the organisation 1. Is Government policy sufficiently focused on HIV prevention? 1.1 Central and local government has failed to invest sufficient resources in HIV prevention. The lack of a national strategy for HIV and sexual health beyond 2010, despite the large burden of cost that HIV imposes on the NHS, is evidence of the low degree of priority attached to this area by national government. 1.2 HIV prevention has also been given relatively low priority by NHS PCTs despite regional coordination arrangements designed to address the need for large-scale, cross-boundary prevention activities. Within London there is a lack of clarity about whether any HIV prevention activities will continue to be funded beyond April 2011, when the current programme contracts expire. 2. Have the right groups been targeted in recent prevention campaigns? 2.1 HIV prevention in the UK has suffered from a persistent misunderstanding among policy makers, funders and the general public regarding the nature of the HIV epidemic in the UK. The UK is not experiencing a generalised epidemic, and never has done. The UK epidemic is classified as a concentrated epidemic by UNAIDS, one in which HIV infections are overwhelming concentrated in specific population groups: gay men, Africans and injecting drug users. Health Protection Agency communications have always been insufficiently explicit about the extent to which infections among gay men continue to form the predominant group of infections occurring in the UK. For example in 2009, 1782 cases of HIV were diagnosed in gay men (83% of infections acquired in the UK). In comparison, of 2240 infections among heterosexuals, 68% were acquired abroad, and of the remainder, the majority occurred in people of African origin. 204 2.2 Given the continuing high level of infection in men who have sex with men (and the high rates of recent infection identified through the Recent Infection Testing Algorithm) it is appropriate that they are a priority group for prevention campaigns such as CHAPS. 2.3 Similarly, given the high level of infection in African people, it is appropriate that national programmes such as NAHIP focus on this group. A recent study suggested that up to 35% of newly diagnosed black Africans acquired their infection in the UK.205 Given the high prevalence of HIV (including undiagnosed HIV) in this group, there is a risk of onward transmission in the UK. 2.4 The number of infections in heterosexuals born in the UK remains low, although it has been slowly increasing over the past decade. For example, prevalence in pregnant women born in the UK has increased from 0.02% in 2000 to 0.05% in 2009 (to put this in perspective, in pregnant women born in Africa and now resident in the UK HIV prevalence

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Health Protection Agency. HIV in the United Kingdom: 2010 Report. Health Protection Report 4 (47), 2010. Burns FM et al. United Kingdom acquisition of HIV infection in African residents in London: more than previously thought. AIDS 23: 262-6, 2009.

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Memorandum by NAM (HAUK 24) was 2.44% in 2009). 206 This suggests that heterosexuals born in the UK are a lower priority for HIV prevention campaigns; programmes dealing with sexual health more generally may provide more benefit. 2.5 Targeting of the most affected groups must remain the major priority for prevention activities. The more important question is whether targeting within these risk categories is taking place with sufficient success to have an impact on HIV incidence. For example, despite the observed association between larger partner numbers and both unprotected intercourse and HIV-positive status, there has been little emphasis on reaching men with larger numbers of partners in HIV prevention activities targeted at gay men. 3. How could the uptake of testing be improved? 3.1 The problem is not so much with take-up rates, but with offer rates. In other words, the primary target of interventions needs to be doctors and other clinical staff, rather than people at risk of HIV infection. The recommendation in the 2008 BHIVA / BASHH / BIS testing guidelines of a universal offer to patients entering hospital or registering for a GP in an area of high HIV prevalence has not been implemented. In a series of pilot implementation projects, patient acceptance of an offer of HIV testing was high (usually over two-thirds of patients), but there was great variability between doctors and between clinical teams in the number of HIV tests offered. 207 3.2 Building HIV testing into contractual arrangements and performance indicators may have an impact. Moreover, the experience of the implementation of antenatal HIV screening needs to be learned from. 4. How could prevention initiatives be better delivered and evaluated? 4.1 In our view prevention targeted at the most at-risk groups is being delivered with insufficient energy and pace. The decision-making processes of the national partnerships are slow, and the development of national strategy and campaigns has shown little sense of urgency in recent years. In real terms expenditure on prevention has declined over the past decade despite a continuing high rate of HIV incidence. 4.2 However prevention activities targeting the at-risk groups also face significant new challenges. The community mobilisation which resulted in major changes in gay men’s sexual behaviour in the mid-1980s was achieved in a community that was small and easy to mobilise due to the climate of fear surrounding the subject of AIDS. Today London has the largest community in Europe, one that is hugely diverse and largely lacking in any sense of solidarity outside commercial events such as annual festivals. There have been big shifts in attitudes towards risk and responsibility for avoiding risk which reflect changes in wider society. These things make prevention more difficult, and also make it more difficult to draw upon past models or experiences in other countries in order to show us what will work today. 4.3 Similarly for African communities there are many social barriers to effective prevention, including high levels of stigma relating to HIV infection, and cultural expectations of male and 206

Health Protection Agency. Data Tables of the Unlinked Anonymous Dried Blood Spot Survey of Newborn Infants - Prevalence of HIV in Women Giving Birth, 2010. 207 Health Protection Agency. Time to test for HIV: Expanded healthcare and community HIV testing in England, 2010.

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Memorandum by NAM (HAUK 24) female sexuality, that challenge the capacity of current prevention activities to effect substantial change. 4.4 For these reasons we believe a substantial investment in prevention research will be necessary in the UK if we are to achieve more substantial and lasting reductions in new HIV infections. Research needs to address a number of pressing questions. For example: • How can we use new technologies to reach people while reducing the human resource costs of prevention? • How do we address perceptions among gay men that avoiding HIV transmission is solely the responsibility of men who are already infected? • Is it sound to assume that the `least intrusive intervention` is always the most effective intervention? • What is the impact of antiretroviral treatment on reducing the number of new infections, and does earlier diagnosis and timely treatment have an impact on new infections in the UK? 4.5 There is also the need to evaluate whether the establishment of large national cohort studies to evaluate behaviour, HIV incidence and impact of prevention activities would be an effective means of unifying currently disparate research activities, and whether such cohorts would provide information of sufficient value to justify an ongoing investment. National cohort studies in Australia have been invaluable in informing HIV prevention activities. 4.6 Delivery of prevention activities is dependent on the scale of funding. It is hard to see how delivery could be improved without an increase in scale that would permit better national and regional coordination, a better approach to the use of evidence in the commissioning of prevention activities and the development of the monitoring and evaluation infrastructure that would permit more rigorous evaluation of outcomes. 5. How can the NHS best commission and deliver HIV treatment? In what setting can treatment most effectively be delivered? 5.1 NHS commissioning and delivery of HIV treatment needs to take into account the differing needs of patients, who are likely to fall into one of the following categories. • Stable patients with uncomplicated HIV infection, newly diagnosed or with longer-term well-controlled infection, without any major social obstacles to selfcare. • Patients with comorbidities such as hepatitis C, cancer, cardiovascular disease and other disorders occurring at a higher frequency in people with HIV infection, who may need the coordinated care of both HIV and other specialists. Patients with extensive treatment experience and drug resistance will also need expert management, and are more likely to have comorbid conditions owing to their age and duration of infection. • Acute AIDS cases (individuals diagnosed late, in need of inpatient care and expertise in the management of HIV-related opportunistic infections). This group of patients will often be diagnosed in A & E, or by HIV non-specialists. • Hard to reach patients with complex needs e.g. migrants with TB and HIV, homeless people unable to adhere well to medication, injecting drugs users on substitution therapy, patients with mental illness, who may need care and support coordinated between HIV services and other non-clinical support services. In all 5

Memorandum by NAM (HAUK 24) cases this group of patients are vulnerable to treatment failure due to poor adherence and erratic clinic attendance, and need follow-up in the community. 5.2 Management of patients with uncomplicated HIV infection will in the longer term be suitable for devolution from hospitals to general practice or to polyclinic-type centres where district clinical nurse specialists can deliver HIV clinics. Innovations in monitoring technologies and information technology, coupled with the greater durability of HIV treatment, mean that most people who start HIV treatment without any symptoms should rarely have to attend a hospital for care after initial work-up. Furthermore, patients are likely to be able to play more of a role in monitoring their own condition as a result of new monitoring technologies within the next few years, and can receive delivery of medication, reducing their future need for interaction with general practice. Armed with good patient information and a supportive health care system, many people with HIV will be able to take greater responsibility for self-management of their condition in years to come. 5.3 However, it is overly simplistic to assume that the majority of patients with HIV will eventually be managed through general practice, with high levels of selfcare. Mandalia et al project that in 2013 50% of people with HIV receiving care in the UK (39,000 people) will be classified as symptomatic or AIDS-diagnosed. 208 This classification refers to the stage at which the person was diagnosed and is indicative of their subsequent level of utilisation of hospital services. For all the complex conditions listed above, there is extensive evidence that late diagnosis with symptomatic disease or AIDS is strongly associated with a higher subsequent risk of developing comorbid conditions. 5.4 There will thus be a need for continued strong linkages between local HIV care and expertise at centres of excellence, and there is a strong case for concentrating specialist care at a smaller number of major centres. There will also be a growing need for greater collaborative working between HIV services and other specialisms such as cardiovascular medicine, oncology, hepatology and geriatric medicine as the HIV-positive population in care ages. 5.5 Effective commissioning will require the recognition that the long-term needs of the HIV-positive population will remain complex, possibly in the majority of cases. This requires the development and maintenance of care networks within a national or regional framework. GP commissioning of HIV care would significantly undermine the evolution of HIV services towards a network model by isolating particular aspects of care and setting up contractual barriers to collaboration between those with the greatest expertise in managing complex cases, that is, those cases which have the greatest potential to incur the largest costs to the NHS. 209 5.6 The Government’s White Paper Equity and excellence: Liberating the NHS has undertaken to put information for patients at the heart of the NHS. The management of increasingly complex conditions will require a continued focus on high-quality patient information to help patients navigate the health care systems and engage in effective self-care.

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Mandalia S, Mandalia R, Lo G, Chadborn T, Sharott P, et al. Rising population cost of treating people living with HIV in the UK, 1997-2013. PLoS One, 5, 12: e15677, 2010 209 Mandalia et al note that the average number of inpatient days consumed by patients diagnosed with AIDS rose from 7.7 per annum in 1997 to 10.9 in 2006, despite a decline in new AIDS diagnoses during that period, an indication of the growing complexity of care.

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Memorandum by NAM (HAUK 24) 5.7 It is vitally important to commission alongside HIV treatment, treatment information materials and services to support individuals to adhere to their drug regimens. In HIV, adherence to drug regimens is critical to achieving treatment success. Poor adherence results in the development of resistance which necessitates alternative, more expensive drug regimens. 5.8 The Government’s White Paper Equity and excellence: Liberating the NHS correctly cites international evidence which “shows that involving patients in their care and treatment improves their health outcomes, 210 boosts their satisfaction with services received, and increases not just their knowledge and understanding of their health status but also their adherence to a chosen treatment. 211 It can also bring significant reductions in cost, as highlighted in the Wanless Report, 212 and in evidence from various programmes to improve ”213

the management of long-term conditions.

5.9 The British HIV Association (BHIVA) / British Association for Sexual Health & HIV (BASHH) Guidelines on provision of adherence support (2003) state: “Reinforcing information provided verbally with written information to take home…is likely to be beneficial as patients commonly misunderstand their health care providers’ instructions”. 5.10 In its Recommended Standards for NHS HIV Services (2003), the Medical Foundation for AIDS & Sexual Health describes the provision of information, education and psychological support that facilitates self-management as “the cornerstone of HIV care”. 6. What impact might the proposed commissioning reforms have on HIV treatment? 6.1 We are concerned at the short-term risk posed to the standard of HIV care through any switch to GP commissioning to HIV services, and we therefore support the recent decision to retain the commissioning of HIV treatment services through the NHS Commissioning Board. 6.2 We are also concerned that a move towards GP commissioning of HIV treatment and a consequent focus on cost at consortium level would lead to increased restrictions on the 210

Fremont, A.M., et al ‘Patient-centred processes of care and long-term outcomes of myocardial infarction.’ Journal of General Internal Medicine 16: pp.800-8, (2001). Bechel, D.L., Myers, W.A., Smith, D.G., ‘Does patient-centred care pay off?’ Joint Commission Journal of Quality Improvement 26(7): pp.400-9, (2000). Kaplan, S.H., Greenfield, S., Ware, J.E., ‘Assessing the effects of physician-patient interactions on the outcomes of chronic disease’ Medical Care 27(3)Suppl: pp.S110-27, (1989). 56.

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Stevenson, F.A., Cox, K., Britten, N., Dundar, Y., ‘A systematic review of the research on communication between patients and health care professionals about medicines: the consequences for concordance’ Health Expectations 7(3): pp. 235-45, (2004). ‘The Human factor: How transforming healthcare to involve the public can save money and save lives’, NESTA (2010). Garcia-Alamino, J.M., Ward, A.M., Alonso-Coello, P., Perera, R., Bankhead, C., Fitzmaurice, D., Heneghan, C.J., ‘Self-monitoring and self-management of oral anticoagulation’, Cochrane Database of Systematic Reviews, Issue 4 (2010).

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One of the three future scenarios modelled in the report was a “fully engaged” scenario where patients and the public were more engaged in their health, contributing to significantly lower demands on the health service in the longer-term. Wanless, D., Securing our Future Health: Taking a Long-Term View, (2002).

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Heisler, M., Bouknight, R.R., Hayward, R.A., Smith, D.M., Kerr, E.A., ‘The relative importance of physician communication, participatory decision-making, and patient understanding in diabetes self-management’ Journal of General Internal Medicine 17(4): pp.243-52, (2002).

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Memorandum by NAM (HAUK 24) use of antiretroviral drugs and an uneven standard of care across the country. For example, the use of newer drugs in fixed dose combinations is associated with better adherence to treatment, less treatment failure, less drug resistance and fewer serious side-effects. The restriction of prescribing to older, cheaper generic drugs by consortia or providers seeking to save money might lead to poorer outcomes and higher costs in the longer term as patients experience greater difficulties with adherence due to high pill burden and more side-effects. 6.3 National standards in the complex area of treatment are more likely to be maintained through national or regional commissioning arrangements, together with expert input into treatment protocols. There are also well-established systems for patient consultation on standards of care and on prescribing guidelines at both national and regional level that have built patient trust in the quality of care offered, and ensured that the patient voice plays a central part in setting standards of quality care. 214 We would be very concerned if future commissioning reforms were to undermine the key role that has been played by people living with HIV in the specification and monitoring of national standards for HIV care. 6.4 GP commissioning also has the potential to undermine economies of scale achieved in the purchase of antiretroviral drugs through regional negotiations. Antiretroviral drugs costs probably comprise about one-third of the total cost of NHS HIV care, although no recent public data are available to verify the current cost. 17 February 2011

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Patient representatives elected by a UK Community Advisory Board sit on all British HIV Association clinical guidelines panels, and on the NHS London Antiretroviral Drugs Advisory Board.

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Memorandum by the National African HIV Prevention (NAHIP) Programme (HAUK 59)

Memorandum by the National African HIV Prevention (NAHIP) Programme (HAUK 59) Evidence being submitted from the National African HIV Prevention (NAHIP) programme answers the committee’s questions in relation to HIV and AIDS amongst Africans living in England. The NAHIP programme considers an African to be anyone who identifies as African, regardless of whether this is someone that has lived in the UK their whole life or whether they are a newly arrived immigrant. Monitoring a. How robust is the current system for monitoring the number of people with HIV in the United Kingdom? The current systems for HIV surveillance produce robust and respected monitoring data on many different aspects of the HIV epidemic in the UK. The data is used locally and nationally to assess need and understand the changing epidemic, but the data is mainly quantitative and based on clinical records. NAHIP and its agencies are reliant on the information provided by the HPA to design, commission and plan prevention work, but are aware of gaps which exist within the data regarding those who have not sought clinical intervention. b. Will the proposed public health reforms impact on this system? The Department of Health White Paper 215 proposes the creation of a new public health body, Public Health England, into which the Health Protection Agency will be incorporated. This aims to “strengthen public health surveillance” and “develop and enhance the public evidence base” (para 4.78) by integrating all public health monitoring systems. If this is achieved, and it results in better HIV monitoring, as the White Paper suggests, the public health reforms will have a positive impact. However, there are potentially three main negative impacts: • According to the proposals, Public Health England will take on the current functions and powers of the HPA. There will be substantial negative impacts if the functions are not transferred in full and some functions of the current HIV monitoring systems are lost. It is imperative that the reforms do not result in loss of quality or quantity of HIV surveillance data. • As the HPA will no longer be an independent body, there will be a loss of independence and possibly transparency in HIV monitoring. Even after incorporation into Public Health England, HIV surveillance and analysis must remain free from a politicised agenda. • The proposed funding and commissioning structure, where prevention is likely to be commissioned by Public Health England and treatment commissioned under the NHS, risks fragmentation of monitoring treatment and diagnosis. Some impacts of the proposed reforms are not yet clear as, although the Department of Health has promised to safeguard the income generating activities of the HPA 216 , it is not yet clear how much will be spent on public health monitoring.

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Department of Health, “Healthy lives, healthy people: our strategy for public health in England”, 30th November 2010 216 Department of Health (30th November 2010) “Healthy lives, healthy people: our strategy for public health in England”: p65, paragraph 4.62

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Memorandum by the National African HIV Prevention (NAHIP) Programme (HAUK 59) c. Could anything be done to improve monitoring? The national HIV prevention programmes, NAHIP and CHAPS, have supplemented HPA’s monitoring of the key populations at higher risk with independent research217 . The programmes have proved ideally placed to investigate and provide detailed insight into particular trends identified by national HIV prevalence data. The research has been used to improve prevention initiative design and commissioning both inside and outside the programmes. However, as NAHIP’s research funding is limited, the HPA could support the programme with more regular community profiling and provision of qualitative data. Publishing special reports annually, such as the 2008 report on “Sexually transmitted infections in black African and black Caribbean communities in the UK”218 , would significantly improve monitoring and understanding. This could be achieved by increasing opportunities for joint working between the HPA and other programmes investing in research into specific aspects of the UK’s HIV epidemic. NAHIP would also welcome cross-departmental collaboration between the Home Office and HPA to produce monitoring data on the number of people living with HIV who are in detention centres and who are deported, as this is not currently available. d. What groups in particular are at risk from HIV? Africans living in England are still disproportionately affected by HIV (second only to men who have sex with men) 219 . Black Africans account for 33% of all people living with HIV in the UKv and 40% of all new diagnosesiv. Between 1995 and mid 2010, black Africans accounted for 41% of the UK’s total HIV diagnoses, of which the majority (93%) were attributed to heterosexual sex 220 . In 2009, there were 22,220 black Africans diagnosed as living with HIV in Englandv. The HPA estimates that 26% are unaware of their infectionv. This takes the total to 27,997 (although estimates vary within HPA data). Prevalence is estimated to be 3.7% or approximately 1 in 20 Africans in England (though this varies as population estimates vary and compares to prevalence of 0.09% among the white population). In 2009, 54% of all new diagnoses in the UK were acquired through heterosexual sex, of which 63% were in black Africansv. NAHIP recognises that some sub-groups of Africans are more likely to be at risk of HIV acquisition, as neither sexual HIV risk nor unmet HIV prevention need is evenly distributed. Interventions must be targeted towards and tailored to address the particular needs of: • African women: In 2009, twice as many black African women were diagnosed with HIV than African menv. This reflects the gendered nature of the epidemic in sub-Saharan Africa. Women have additional biological vulnerability to acquisition in heterosexual sex and behavioural factors and socio-economic status, such as negotiation of condom use, also contribute. • African men who have sex with men: In the UK, African men who have sex with men are twice as likely to have HIV as those who do not have sex with men 221 . A 2004 study 222 showed that African men who have 217

E.g. Bass Line 2007-08, 2008-09 and the Gay Men’s Sex Survey Health Protection Agency (November 2008) “Sexually transmitted infections in black African and black Caribbean communities in the UK: 2008 report” 219 Health Protection Agency (26th November 2010) “HIV in the United Kingdom: 2010 Report”, 220 Health Protection Agency: HIV/STI Department (2010) “United Kingdom: New HIV Diagnoses to end of June 2010”: Table 10 and Table 11 221 Mayisha II Collaborative Group (2005) “Assessing the feasibility and acceptability of community based prevalence surveys of HIV among black Africans in England” 222 Hickson F, Reid D, Weatherburn P, Stephens M, Nutland W, Boakye P, (2004) “HIV, sexual risk and ethnicity among men in England who have sex with men”. Sexually Transmitted Infections, 80, 443-450 218

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Memorandum by the National African HIV Prevention (NAHIP) Programme (HAUK 59)

• • •

sex with men are twice as likely to be living with HIV as white men who have sex with men. People in sexual relationships with people living with HIV 223 . People with multiple sexual partners and people in relationships with people who have multiple sexual partners. Those with low levels of education 224

NAHIP believes that targeting HIV prevention interventions to those most likely to benefit is the most efficient use of limited resources. Prevention a. Is Government policy sufficiently focused on HIV prevention? The proposed Government policy focuses on sexual health with little reference to HIV or HIV prevention and treatment. This indicates that HIV is insufficiently prioritised, which may result in HIV prevention not being adequately funded and addressed at local and national level. Currently, national investment into HIV prevention is limited to the national prevention programmes; whilst local HIV prevention is commissioned by PCTs, where the lack of ringfenced funding means that prevention initiatives vary immensely across the country. The following recommendations could be considered in order to ensure that Government policy sufficiently focuses on HIV prevention: • Government HIV prevention policy needs to incorporate ‘treatment as prevention’ and encourage changes to testing policy to accord with treatment policy. This should include offering free treatment for HIV to those with irregular immigration status. • Better cohesion in national and local prevention policy: This includes ring-fenced funding for local prevention, so that prevention initiatives are consistent nationwide. Local prevention initiatives need to amplify the national prevention programmes, rather than the current reliance on CHAPS and NAHIP to fill some local gaps in prevention funding. • Prevention policy also needs to recognise that transmission and acquisition does not happen in isolation to the key populations seen as of greater risk. This means international cohesion in prevention policy and internationally consistent testing and prevention messages. Prevention messages need to recognise that the key populations are not isolated. • There needs to be greater understanding of how testing policy interacts with prevention policy: focusing on early diagnosis and starting treatment at the right time have prevention benefits, thus reducing the long term burden on the NHS. b. Have the right groups been targeted in recent prevention campaigns? Recent prevention campaigns have been delivered through the national prevention programmes, which are targeted at key populations at higher risk of acquiring HIV in the UK; Africans and men who have sex with men. Therefore, the right groups have been targeted in recent campaigns. NAHIP sees targeted prevention campaigns as the most effective way to meet the unique prevention needs that a particular group has, as it enables campaigns to tailor information in 223

Dodds C, NAHIP partners et al (2008) “The Knowledge, the Will and the Power: a plan of action to meet the HIV prevention needs of Africans living in England” 224 Hickson F, Owuor J, Weatherburn P, Dodds C, Reid D, Hammond G, Jessup K (2009) “Bass Line 2008 -09 survey: assessing the sexual HIV prevention needs of African people in England”: p49 – low education is those who reported only primary school education or no formal education

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Memorandum by the National African HIV Prevention (NAHIP) Programme (HAUK 59) a culturally appropriate way. However, the NHS’ general sexual health campaigns, which are aimed more widely, still need to include information about HIV and increase support to targeted HIV campaigns. c. To what extent have prevention initiatives targeted at injecting drug users been successful? NAHIP’s focus is the prevention of sexual acquisition and transmission of HIV rather than via IDU. The number of Africans diagnosed as acquiring HIV through IDU in the UK is very low (98 diagnoses between 1995 and mid 2010 225 ). Transmission via IDU remains a small problem in the UK (of the 111,882 HIV diagnoses since the start of the HIV epidemic in the UK, only 5% have been as a result of IDUvi). Incidence has remained stable since 1995 (between 110-215 new diagnoses per annumvi) and prevalence is estimated at about 1.5% 226 . This represents a huge decline since the beginning of the 1990s when prevalence was at nearly 6%. The decline in prevalence shows that consistent, targeted prevention initiatives towards one high prevalence community can be very successful and have long-term impact. Injecting drug use is now seen as a declining trend in England 227 . However, substance misuse, including IDU, alcohol and other non-injectable drugs, contributes to increased risk of sexual acquisition and transmission of HIV and other STIs. Therefore, substance misuse treatment programmes have an important role in consolidating sexual HIV prevention initiatives. d. How could prevention initiatives be better delivered and evaluated? NAHIP currently spends 15% of its budget on external, independent evaluation, research and development with the aim to improve delivery of the prevention initiatives. “The Knowledge, the Will and the Power” 228 plan of action for prevention demonstrated that one-to-one interventions are more costly and time consuming, but have better outcomes and outcomes which are easier to demonstrate than widespread prevention initiatives. Stronger delivery and evaluation could be delivered by investing more in intensive interventions. However, to better deliver and evaluate prevention initiatives the following challenges must be overcome: • There is little funding available for evaluation within most programmes which limits the scope of evaluation possible. Reporting requirements for monitoring and evaluation are becoming more rigorous across the sector but delivering more thorough evaluation incurs extra costs, whilst funders are demanding bigger impact. For small community based organisations the lack of funding for evaluation and the increasing reporting burden is particularly acute. • Evaluation should aim to improve prevention delivery by applying lessons learnt. Yet the current economic climate is not conducive to innovation. This can limit the usefulness of an evaluation once it has been completed and can affect improvements in delivering future prevention interventions too. • There is inherent difficulty in assessing progress towards prevention targets because of difficulties in collecting data which shows widespread behaviour change or change in

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Health Protection Agency: HIV/STI Department (2010) “United Kingdom: New HIV Diagnoses to end of June 2010”: Table 11 226 Health Protection Agency (November 2010) “Shooting Up – Infections among injecting drug users in the United Kingdom 2009. An update: November 2010” 227 National Treatment Agency for Substance Misuse (2010) “Injecting drug use in England: a declining trend” 228 Dodds C, NAHIP partners et al (2008) “The Knowledge, the Will and the Power: a plan of action to meet the HIV prevention needs of Africans living in England”

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Memorandum by the National African HIV Prevention (NAHIP) Programme (HAUK 59) incidence, and which takes into account the time frames over which prevention work needs to be measured. • More effective delivery requires investment into research which aims to identify which interventions are most effective for different populations. Testing a. Are current testing policies adequate across the country? Although there have been some successes (e.g. high uptake of testing in antenatal clinics and increased uptake in STI clinics 229 ), recent statistics on late diagnosis and undiagnosed infection show that current testing policies are inadequate, and that in some cases, they fail African communities disproportionately. The HPA estimates that 26% of people living with HIV are unaware of their status – this is 22,200 people in the UK, of whom approximately 6500 are Africansv. African men are significantly more likely to have undiagnosed infection (36% of those living with HIV are undiagnosediv). Although it is crucial that testing policy aims to reduce the total amount of undiagnosed infection, it is particularly important that there is an increase in acceptable opportunities for African men to test. 52% of adults were diagnosed with HIV at a late stage of infection in 2009v (CD4 counts less than 350 per mm3, the stage at which treatment is recommended to begin, within three months of diagnosis). Late diagnosis is more common amongst heterosexual men (66%) and women (59%) than men who have sex with men. The most recent statistics show that 42% of African diagnoses were lateiv. Late diagnosis and undiagnosed infection have negative knock-on effects on prevention and treatment and care costs. Inadequate testing policy may be compromising prevention efforts. b. What can be done to increase take-up rates? Reasons for Africans in the UK not testing and testing late are complex, but are often related to fear and stigma 230 . This means that there needs to be a review of the ways that HIV testing is offered and delivered. Guidelines which have aimed to increase take-up rates (for example, the 2008 BHIVA guidelines 231 ) have not been made mandatory, and the extent to which they were implemented is unclear 232 . Recommendations made in the guidelines, such as testing new patients at GP surgeries in high prevalence areas, would normalise testing and should increase take-up. In order to do this, health care workers need to be made aware of the guidelines and feel comfortable offering a test. Testing policy also needs to address and respond to the specific needs of those who are currently reluctant to test. For Africans in the UK, these issues include: • Underestimation of prevalence and risk: Of Bass Line respondents who had never tested, 52.7% answered “I’ve no reason to think I have HIV”. A further 14% did not think it was important to know their HIV statusxvi. Apathy and underestimation both stem from a lack of knowledge, which needs to be addressed to increase uptake of testing. • Not recognising the benefits of testing: 16% of Bass Line respondents did not know about HIV treatment at all, and 38% did not know that treatment works better when

229

Health Protection Agency (December 2010) “Time to test for HIV: Expanded healthcare and community HIV testing in England” 230 Hickson F, Owuor J, Weatherburn P, Dodds C, Reid D, Hammond G, Jessup K (2009) “Bass Line 2008 -09 survey: assessing the sexual HIV prevention needs of African people in England”: p19

231 British HIV Association, British Association of Sexual Health and HIV, British Infection Society (2008) “UK National Guidelines for HIV Testing 2008”. http://www.bhiva.org/documents/Guidelines/Testing/GlinesHIVTest08.pdf. 232

Health Protection Agency (December 2010) “Time to test for HIV: Expanded healthcare and community HIV testing in England”

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Memorandum by the National African HIV Prevention (NAHIP) Programme (HAUK 59)

•

•

•

taken before a person becomes ill233 . Lack of accurate knowledge about treatment could contribute to an individual’s fear of testing or reinforce apathy; it is imperative that testing messages are accompanied with information about treatment availability and options. Fear and stigmatisation: 27% of Bass Line respondents had never tested for reasons related to fear and stigma (for example, 19.4% of those who were unsure of their status answered “I am too afraid I might have HIV”)xvi. Some fear may stem from not recognising the benefits of testing (see previous point), but this is also key to understanding why stigma can be a barrier to addressing HIV as a public health issue (see final section on stigma). Lack of access to treatment: Those with irregular immigration status who cannot access HIV treatment free of charge from the NHS may see no reason to test. Fast, reliable referral pathways to free treatment and care for everyone make the benefits of testing clearer. Lack of trust in ‘official’ services: 7% of Bass Line respondents who had never tested had not done so either because they didn’t trust the places where they could test or because they did not want to use ‘official’ servicesxvi. For those with irregular immigration status, reluctance to engage with any government service may be affecting testing take up. Lack of trust was also found to be more acute amongst behaviourally gay and bisexual African men and women, perhaps because of fear of multiple discrimination.

Testing policy must continue to increase opportunities for testing in non-official and nonNHS settings. NAHIP has been aware of shortfalls in PCT funding for community based testing and has tried to plug the gap in some areas. This needs to be addressed in the commissioning proposals. Treatment a. How can the NHS best commission and deliver HIV treatment? • The NHS should deliver free HIV treatment to everyone, regardless of immigration status. • Standards for quality of HIV treatment and care need to be implemented nationally. b. What impact might the proposed new commissioning reforms have on HIV treatment? The proposed commissioning reforms would see HIV treatment commissioned by the NHS while Public Health England would be responsible for commissioning prevention. By funding HIV treatment separately, there is less likelihood of funding cuts to prevention work if treatment costs rise. This is important for stability in both commissioning of treatment and prevention. However, it may cause a fragmented response to ‘treatment as prevention’ and a lack of co-ordination in the response to HIV. As migrants can find the NHS difficult to navigate, it is important that all NHS patients are aware of how commissioning and policy changes may alter the mechanisms an individual has to complain if they are unhappy with the treatment and care they receive. c. In what setting can treatment most effectively be delivered? Although the current model of clinical delivery works well for most patients, there is a need to investigate alternative settings for treatment delivery to minimise the number of patients who drop out of care. This is particularly important for migrants who can find the NHS 233

Hickson F, Owuor J, Weatherburn P, Dodds C, Reid D, Hammond G, Jessup K (2009) “Bass Line 2008 -09 survey: assessing the sexual HIV prevention needs of African people in England”: p28

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Memorandum by the National African HIV Prevention (NAHIP) Programme (HAUK 59) difficult to navigate; those with irregular immigration status and others who are reluctant to engage with ‘official’ services and those that fear they will be stigmatised if they access treatment. More research is needed in this area. There is also a need for cohesive policy to mitigate the disruption to treatment and care caused by migrant dispersal systems and detention. Cost a. Have cost considerations been satisfactorily balanced with public health imperatives in HIV: i. In prevention policy; and ii. Treatment policy? The lack of ring-fenced funding for targeted HIV prevention causes disparities in addressing public health imperatives in HIV across England. HIV prevention competes with other sexual health targets and funding decisions rest with local commissioners. This results in an imbalance between unmet HIV prevention need and the eventual increased cost in treatment that this causes. A recent study has suggested that by 2013, the cost of providing treatment and care in the UK will exceed £720 million per annum or more than £1000 million if the cost of community care is included 234 . Improvements to testing policy should result in more and earlier diagnoses, which will initially increase the amount spent on HIV treatment and care in the UK. It is estimated that lifetime care for a person living with HIV costs between £280,000 and £360,000 235 . When compared with the sum currently spent on prevention in the UK, it is evident that the Government needs to think in the longer-term to understand the value for money that investment in prevention provides. Cutting treatment and care costs is not the way to balance the cost: the same studyxx goes on to say that any savings made would have very limited impact and could potentially compromise patient care. It concludes that a “concerted effort to reduce the ongoing transmission of HIV is much more likely to have a significant impact on costs”. Investing more in prevention will reduce future treatment and care costs by reducing the future overall case load. Investing in early diagnosis will prevent the additional costs associated with emergency and complicated treatment and care, and will reinforce investment in prevention. b. Is research funding currently prioritised? Both quantitative and qualitative research needs to be prioritised and sufficiently funded in order to achieve better delivery of prevention interventions at greater value for money. Stigma a. What impact does stigmatisation of those with HIV have on those infected, and on addressing HIV as a public health problem? Stigmatisation has serious and varied impacts on people living with HIV. Studies have shown that African men and women’s experiences following disclosure include domestic violence, homelessness, social isolation or rejection and unemployment236,237,238 . People with 234

Mandilia S et al. (2010) “Rising population cost of treating people living with HIV in the UK, 1997-2013”. PLoS One, 5, 12: e15677, 2010

235

Health Protection Agency (November 2009) “HIV in the UK 2009” http://www.hpa.org.uk/Publications/InfectiousDiseases/HIVAndSTIs/0911HIVUK2009.

236 

Doyal & Anderson (2005) “‘My fear is to fall in love again…’ How HIV‐positive African women survive in  London”  237 Doyal & Anderson (2004) “Women from Africa living with HIV in London: a descriptive study”

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Memorandum by the National African HIV Prevention (NAHIP) Programme (HAUK 59) diagnosed HIV infection can internalise stigma, which can cause low self-esteem. This may affect an individual’s motivation to seek support, disclose 239 or protect sexual partners; all of which are detrimental to addressing HIV as a public health problem. Reluctance to disclose one’s status or talk openly about HIV has serious consequences for addressing HIV as a public health problem. It hides the realities of HIV and can lead an individual disassociating from HIV, by seeing it as something that only happens to ‘other people’. This was evident in the findings of Bass Line: the majority of respondents underestimated HIV prevalence and 52% of respondents who had never tested for HIV said they ‘have no reason to think they have HIV’. Distancing reduces the likelihood of recognising one’s own risk of transmission or acquisition, the need for testing, and acting to reduce risks 240 all of which make HIV harder to address in public health. Misinformation and HIV-related stigma tend to reinforce one another. There is also evidence that fear of stigma and discrimination prevents some African people from testing 241 (26% of Bass Line respondents who had never tested cited reasons related to fear and stigma 242 ) or accessing services 243 , both of which have public health consequences. b. Where are problems of stigmatisation most acute? HIV related stigma has many layers and every individual has different experience. However, stigma is most acute in already marginalised groups, as it can act to reinforce existing stigma and discrimination against a marginalised community. This then reinforces the stigma connected to the virus. This can happen at multiple levels from within and without a community and disproportionately affects those who are then multiply marginalised (e.g. an African, gay asylum seeker). Stigma is further worsened when it taps into pre-existing cultural taboos and it acts to reinforce social inequalities. For the UK African community, this may include racism, immigration status, xenophobia, homophobia, sexism and assumptions about sexual behaviour such as promiscuity or infidelity 244 . c. What measures are currently taken to tackle HIV stigmatisation? What more should be done? Measures currently taken to tackle HIV stigma are varied and include legislation against discrimination, research, educative campaigns and engaging people living with HIV to talk about their experiences. NAHIP has attempted to tackle stigma through two settings where it is particularly acute in the African community by producing toolkits for the media and for faith leaders. HIV is still treated differently to other STIs and long term health conditions by the public and NHS alike; for example, NHS policy that requires those with irregular immigration status to pay for HIV treatment but not for treatment for other STIs or serious infectious diseases. Measures that tackle stigma need to balance normalisation with accurate information about 238

Doyal et al (2005)“‘I want to survive, I want to win, I want tomorrow’ An exploratory study of African men living with HIV in London” 239 Weatherburn et al (2009) “What do you need? 2007-2008: findings from a national survey of people with diagnosed HIV” Chinouya M; MAYISHA study team et al (2002) “HIV testing and high risk sexual behaviour among London's  migrant African communities: a participatory research study” Sexually Transmitted Infections 78(4):241‐245  241 Elam G et al (2006) “Barriers to voluntary confidential HIV testing among African men and women in England: results from the Mayisha II community-based survey of sexual attitudes and lifestyles among Africans in England”, HIV Medicine 2006; 7(Suppl. 1): 7 (abstract no. O28) 242 Hickson F, Owuor J, Weatherburn P, Dodds C, Reid D, Hammond G, Jessup K (2009) “Bass Line 2008 -09 survey: assessing the sexual HIV prevention needs of African people in England”: p19 243 Doyal & Anderson (2004) “Women from Africa living with HIV in London: a descriptive study” 244 Dodds et al (2004) “Outsider status: stigma and discrimination experienced by gay men and African people with HIV” 240 

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Memorandum by the National African HIV Prevention (NAHIP) Programme (HAUK 59) HIV that still recognises the virus as lifelong, incurable and focused on marginalised communities. Prevention initiatives and fair, carefully testing and treatment policy can successfully reinforce anti-stigma work. To fully address stigma, there must be more interventions that aim to tackle the wider social inequalities and discrimination that permeate society. 18 February 2011

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Supplementary Memorandum by the National African HIV Prevention (NAHIP) Programme (HAUK 102)

Supplementary Memorandum by the National African HIV Prevention (NAHIP) Programme (HAUK 102) Efficacy of recent campaigns 1. How effective have recent national HIV prevention campaigns been? NAHIP’s national HIV prevention campaigns have been increasingly successful in the last few years. NAHIP’s campaigns have a variety of streams, which comprise of mass media elements traditionally associated with campaign work and direct contact intervention work, which is increasingly being associated with more effective behaviour change campaigns 245,246 (see Q2 and 10). NAHIP’s external evaluators (see Q8) have shown that in 2009-10 NAHIP delivered 744 HIV prevention interventions to 11,162 African people. There has been significant improvement this year, which shows the programme’s ongoing commitment to improving the effectiveness of its campaigns. In the last six months of 2010-11, NAHIP delivered 1,151 interventions to over 9,900 people, making it the best performing year in NAHIP’s history. By delivering a mixture of mass media and direct contact interventions, as is considered best practice for the most effective behaviour change campaigns, NAHIP is currently delivering a wide diversity and high volume of prevention interventions at very high cost-effectiveness. a. How does this compare to levels of success seen in other health promotion campaigns? What lessons can be learnt from successes elsewhere? NAHIP’s own campaigns have been increasingly successful because they follow the good practice principles of successful behaviour change campaigns2. The principles are considered to have improved the successes of HIV prevention campaigns internationally. Their application in NAHIP campaigns is covered in detail in Q7, which includes a reliance on direct contact interventions in addition to mass media, and use of carefully designed, behaviour change focused campaign messaging. By incorporating these principles into NAHIP’s campaign designs, NAHIP demonstrates that it is learning from successes elsewhere and would compare favourably to other successful international campaigns. It is not realistic to compare the success of NAHIP’s campaigns with other health promotion campaigns on other public health topics in the UK, because NAHIP only receives a fraction of the investment (see Q3 for a full comparison).

245 Dodds C, NAHIP partners et al (2008) The Knowledge, the Will and the Power: a plan of action to meet the HIV prevention needs of Africans living in England 246 Noar, S.M., Palmgreen P., Chabot M., Dobransky N., Zimmerman R.S. (2009) “A 10-year systematic review of HIV/AIDS mass communication campaigns: Have we made progress?” Journal of Health Communications Feb;14(1):15-42. Compiled from: Maibach et al., 1993; Noar, 2006; Palmgreen et al., 2008; Randolph & Viswanath, 2004; Rogers & Storey, 1987; Salmon & Atkin, 2003.

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Supplementary Memorandum by the National African HIV Prevention (NAHIP) Programme (HAUK 102) Funding of campaigns 2. Evidence submitted to the Committee suggests that the Department of Health currently spends £2.9 million annually on national HIV prevention programmes. Do you feel that this amount is sufficient to undertake the health promotion work needed to reduce unsafe sexual behaviour? The amount currently spent by the Department of Health on HIV prevention is not sufficient. Of the £2.9 million allocated annually to the two national HIV prevention programmes (CHAPS and NAHIP), NAHIP receives £1 million for HIV prevention work targeted to Africans in England. Population estimates vary 247 , but this equates to £1-£2 for an individual African resident in England each year. Effective behaviour change interventions are expensive 248 . Given that new infections are highest amongst the African population 249 ; this is insufficient and disproportionate to need. Comparison of the UK’s spend on prevention with prevention budgets in other countries with similarly focused HIV epidemics indicates that the total investment in prevention is also inadequate 250 . In addition, UNAIDS estimates that the average national spend on prevention is 21% of their spend on HIV treatment and care. The £1 million that the DH currently spends on prevention for Africans is 0.25% of the £399,960,000 annual cost of treatment and care for that population 251 . Greater spend on prevention is an investment to lowering the HIV treatment and care costs to the NHS in the future. Reducing this future burden is one reason why UNAIDS recommends that spending on prevention should be close to 45% 252 of the total spend on treatment and care. NAHIP’s work is split into a number of different streams. Of the £1 million investment into the programme, £150,000 is ring-fenced by the DH to fund and promote the national helpline. Of the remaining £850,000, 17% is spent on independent evaluation and development and more than 65% funds NAHIP’s campaign activities, most of which funds direct contact interventions delivered by regional agencies253 . Health promotion work delivered through NAHIP’s local agencies is always HIV prevention focused, but prevention is more complex than simply reducing unsafe sexual behaviour 254 . NAHIP must also promote PEP, HIV testing, etc., which make significant contributions to reducing incidence but do not reduce unsafe sexual behaviour. 247

E.g. Census 2001 data suggested 500,000 black Africans in England vs. More recent Office of National Statistics Estimates. 248 Dodds C, Weatherburn P, Owour J, Daodu K, Soomre E (2009) “African HIV prevention Handbook: putting the knowledge, the will and the power into practice” London, Sigma Research. p12, figure 2.4b 249 Health Protection Agency (26th November 2010) “HIV in the United Kingdom: 2010 Report” 250 Compare to funding of equivalent programmes in France, US and Canada 251 In 2009, there were 22,220 black Africans seen for HIV treatment and care (http://www.hpa.org.uk/web/HPAwebFile/HPAweb_C/1221482345789). The lowest estimate for the average cost of treatment and care for one person living with HIV per year in the UK is £18000 (http://www.aidsmap.com/Annual-UK-HIV-treatment-and-care-costs-could-reach-750-million-by2013/page/1618137/). This means that HIV treatment and care for black Africans is currently costing the NHS a minimum of £399,960,000 per year. 252 http://data.unaids.org/pub/Report/2009/jc1681_what_countries_need_en.pdf: Accessed 2nd June 2011 253 2010-11 budget figures 254 Dodds C, NAHIP partners et al (2008) “The Knowledge, the Will and the Power: a plan of action to meet the HIV prevention needs of Africans living in England”

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Supplementary Memorandum by the National African HIV Prevention (NAHIP) Programme (HAUK 102) Campaigns and health promotion work on these other issues come from the same £1 million budget. 3. How much money would be needed for an effective national campaign to increase HIV awareness? To what extent is efficacy linked directly to the amount of money spent on the campaign? Although it is not possible to estimate how much an effective national campaign would cost without considering in detail the objectives, outcomes, desired exposure, target audience, evaluation methodology and expected duration; it is clear that the current funding is not enough to fund a fully effective campaign, neither is it in line with UNAIDS guidelines (see Q2), nor comparable to DH spending on other public health campaigns. The £1 million that the DH currently spends on HIV prevention campaigns for Africans is a fraction of the DH investment into other health promotion campaigns 255 : the 5 month “Sex: Worth Talking About” campaign had a budget of £7.67 million (sexual health and teenage pregnancy campaigns have cost £16.49million between 2006-10) 256 ; the “F.A.S.T” stroke campaign cost £12 million 257 and smoking cessation campaigns have seen an investment of over £82.74 million between 2005-10 258 . Investments into similar targeted HIV prevention campaigns in the US and Canada are also far greater 259 . The costs reveal the scale of expenditure needed in order to generate significant outcomes from campaigning: the “F.A.S.T.” stroke campaign reported a big increase in awareness, which was measured by the number of emergency calls for stroke. This is a simple awareness raising or ‘knowledge change’ outcome, yet it still needed considerable investment. HIV prevention campaigns typically aim for long-term sexual behaviour change, which is far more complex both to provoke and to measure, yet it receives considerably less investment. It is notable that NAHIP has proved that it is possible to have some success in campaigning despite budgetary constraints. The African Health Policy Network has brought considerable added-value by exploiting the organisation’s media contacts and its membership relationship to many organisations in the African sexual health sector. For example, the summer 2010 ‘mini-testing campaign’ had a total advertising expenditure of £967.50; about 7% of the full value of advertising the campaign received, which totalled £13,201.12. This included online, print and radio advertising in national African media and had a projected exposure to over 200,000 Africans. (See evidence Qs 936 - 937). While AHPN represents excellent value for the DH’s investment into campaigning, this will not be sustainable in the future without further investment into campaigns, particularly in the current economic climate. 255

http://www.guardian.co.uk/healthcare-network/2011/jan/13/department-health-doubled-advertising-spending60m: Accessed 6th June 2011: In 2005-08 the DH had an annual media spend of £30million, this doubled to £60.28 million in 2009-10. In 2009-10 the DH spent £154.5 million through the COI. 256 http://www.guardian.co.uk/healthcare-network/2011/jan/13/department-health-advertising-spend-2005-2010: Accessed 2nd June 2011. 257 http://news.bbc.co.uk/1/hi/health/7872835.stm: Accessed 2nd June 2011. Cost based on DH 3 year Stroke Strategy. 258 http://www.guardian.co.uk/healthcare-network/2011/jan/13/department-health-advertising-spend-2005-2010: Accessed 2nd June 2011. 259 For example: http://www.ebar.com/news/article.php?sec=news&article=5730: Accessed 2nd June 2011

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Supplementary Memorandum by the National African HIV Prevention (NAHIP) Programme (HAUK 102)

General versus targeted campaigns 4. Do you believe that HIV prevention campaigns should continue to target particular high prevalence groups, or should they be focused upon the population at large? HIV prevention campaigns should continue to target particular high prevalence groups. Both policy 260 and academia 261 advocate targeting “key affected groups and populations” 262 in prevention campaigns. For example, recent UNAIDS guidelines on prevention work, which explicitly include mass media campaigns, state that successful prevention work will be “differentiated and locally-adapted” and “address [...] cultural norms and beliefs”. A systematic review 263 of 34 national HIV campaigns, found that successful campaigns “targeted defined audiences developed through audience segmentation procedures” to “maximise the chances of success”. A move to general HIV prevention campaigns in the UK would contradict moves by other countries with similarly focused epidemics that are progressing to increasingly targeted HIV prevention campaigns. For example, the US is investing with even tighter focus: in 2011 the Centres for Disease Control and Prevention (CDC) has invested US$2.5 million for 2 years of campaigning targeting black African American men who have sex with men (MSM) 264 . In the UK, the two most affected populations: black Africans and MSM 265 (and subpopulations within them), have separate, specific HIV prevention needs, which is why they emerged as disproportionately affected groups. These individual complex needs can only be met through corresponding, targeted HIV prevention campaigns and by engaging specialist agencies in delivery. NAHIP’s targeted HIV prevention work concurs with the international emphasis on targeted and tailored HIV prevention campaigns. a. Bearing in mind the limited resources allocated to prevention and awareness initiatives, what balance between targeted and general work would be most appropriate?

260

http://www.unaids.org/en/media/unaids/contentassets/dataimport/publications/irc-pub06/jc1165-intensif_hivnewstyle_en.pdf: Accessed 2nd June 2011 261 Maibach, E. W., Kreps, G. L., & Bonaguro, E. W. (1993). Developing strategic communication campaigns for HIV/AIDS prevention. In S. C. Ratzan (Ed.), AIDS: Effective health communication for the 90s (pp. 15–35). Washington, DC: Taylor & Francis. Noar, S.M., Palmgreen P., Chabot M., Dobransky N., Zimmerman R.S. (2009) “A 10-year systematic review of HIV/AIDS mass communication campaigns: Have we made progress?”Journal of Health Communications 262 http://www.unaids.org/en/media/unaids/contentassets/dataimport/publications/irc-pub06/jc1165-intensif_hivnewstyle_en.pdf: Accessed 2nd June 2011 263 Noar, S.M., Palmgreen P., Chabot M., Dobransky N., Zimmerman R.S. (2009) “A 10-year systematic review of HIV/AIDS mass communication campaigns: Have we made progress?”Journal of Health Communications Feb;14(1):15-42. 264 “Know Where You Stand” campaign http://www.ebar.com/news/article.php?sec=news&article=5730: Accessed 2nd June 2011 265 Health Protection Agency (26th November 2010) “HIV in the United Kingdom: 2010 Report” and Health Protection Agency: HIV/STI Department (2010) “United Kingdom: New HIV Diagnoses to end of June 2010”: Table 11

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Supplementary Memorandum by the National African HIV Prevention (NAHIP) Programme (HAUK 102) Given the limited resources available for HIV prevention work, it is more costeffective to focus on targeted work. This would echo the decisions made by other countries with similarly focused epidemics 266 and recommendations in international policy 267 (see Q4). However, the UK could achieve a better balance between targeted and general work by taking advantage of existing opportunities to communicate HIV prevention messages to the UK’s population. This could increase the cost-effectiveness and efficacy of targeted work; reduce stigma (see Q5); contribute to HIV prevention in the wider population and would not increase the cost of general work significantly. NAHIP recommends that: •

• •

•

There are increased opportunities for HIV testing and discussion about HIV in clinical and non-clinical settings 268 , in line with the BHIVA 269 and NICE270 guidelines. Ongoing professional development opportunities need to be available for practitioners to keep up-to-date with HIV testing, treatment and care guidelines to implement this, for example training or briefings. All young people receive adequate education about HIV and AIDS through compulsory sex and relationships education in the national curriculum 271 Messages which support HIV prevention objectives are integrated into general health and sexual health campaigns and information, even if a campaign’s main message does not explicitly mention HIV (for example, encouraging increased condom use or regular sexual health check-ups: see Q5) HIV is included in national sexual health guidelines and strategies.

Content of sexual health awareness campaigns 5. Do you believe that HIV prevention should be integrated more closely into general sexual health awareness campaigns, or does HIV require a dedicated campaign of its own? Is it possible that inclusion of HIV in general sexual health campaigns could ‘confuse’ the messages being promoted? Dedicated HIV prevention campaigns are needed to achieve specific behaviour changes which correspond to the HIV prevention needs of the UK’s most disproportionately affected populations: black Africans and MSM (see Q4). The content needed to do this is specific, complex and would not be appropriate for a general sexual health campaign (e.g. NAHIP provides information on HIV testing and treatment entitlements according to immigration status). A general sexual health campaign could 266

See France, Canada and US http://www.unaids.org/en/media/unaids/contentassets/dataimport/publications/irc-pub06/jc1165-intensif_hivnewstyle_en.pdf: Accessed 2nd June 2011 268 Dodds C, Weatherburn P, Owour J, Daodu K, Soomre E (2009) “African HIV prevention Handbook: putting the knowledge, the will and the power into practice” London, Sigma Research. Chapter 13 and Health Protection Agency (December 2010) “Time to test for HIV: Expanded healthcare and community HIV testing in England” 269 British HIV Association, British Association of Sexual Health and HIV, British Infection Society (2008) “UK National Guidelines for HIV Testing 2008”. http://www.bhiva.org/documents/Guidelines/Testing/GlinesHIVTest08.pdf. 270 National Institute for Health and Clinical Excellence (March 2011) Increasing the Uptake of HIV Testing to Reduce Undiagnosed Infection and Prevent Transmission among Black African Communities Living in England (NICE public health guidance 33) 271 http://www.cypnow.co.uk/Education/article/1073066/HIV-education-fails-reach-quarter-young-people/ Accessed 2nd June 2011. 267

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Supplementary Memorandum by the National African HIV Prevention (NAHIP) Programme (HAUK 102) not be expected to tackle specific behaviours delivered through culturally sensitive messages in settings that are appropriate to small pockets of the population, whilst remaining relevant to the wider UK population. However, NAHIP would welcome greater inclusion of simpler HIV prevention messages into general sexual health campaigns to ensure that anyone who needs HIV information has access to it, whether or not they are considered part of a specific target audience. NAHIP recognises that general sexual health campaigns do make a contribution to HIV prevention, regardless of whether they explicitly acknowledge HIV; for example, by advocating for regular sexual health check-ups and condom use. Because these messages are consistent across HIV prevention and SRH, previous general sexual health campaigns (for example, “Sex: Worth Talking About”) could have included some HIV information without confusing the message. Inclusion could also help reduce HIV associated stigma by increasing the visibility of HIV, increasing the availability of accurate information and raising awareness in the public domain. Despite the possibility of including these simpler messages, many HIV prevention messages are too complex to be merged into general sexual health campaigns. 6. Some evidence received by the Committee suggests that, in seeking to reduce the stigma around HIV, recent prevention campaigns have been too moderate in tone. Would more ‘hard-hitting’ campaigns, such as the 1980s ‘Don’t Die of Ignorance’ campaign, be more likely to influence behaviour change? NAHIP’s recent campaigns have been moderate in tone because evaluations of previous campaigns found that the target audience responded better to more moderately toned messages. Producing a campaign which is acceptable to the target audience is more likely to influence behaviour change 272 . NAHIP ensures acceptability by pre-testing new campaign messages and material and incorporating previous lessons learnt. NAHIP’s decision is also based on evidence that ‘hard-hitting’ campaigns are less likely to influence behaviour change. In an evaluative study 273 , the 1987 Australian ‘Grim Reaper’ campaign was found to have “fail[ed] to arouse personal and social concern in a productive manner” and caused “little change in knowledge and high anxiety”. In their drive to be ‘hard-hitting’ such campaigns often lack the balance needed to present the prevention messages in a thoughtful enough way to effect behaviour change. ‘Hard-hitting’ campaigns have also been found to “scare much of the population unnecessarily”; again emphasising the need for targeted, sensitive prevention campaigns (see Q4). Campaigns must be delivered by agencies, like African Health Policy Network (AHPN), that have knowledge and understanding of the target audience, to produce behaviour change without increasing stigma (see Q6a).

272

Noar, S.M., Palmgreen P., Chabot M., Dobransky N., Zimmerman R.S. (2009) “A 10-year systematic review of HIV/AIDS mass communication campaigns: Have we made progress?”Journal of Health Communications Feb;14(1):15-42. 273 Bray, F., & Chapman, S. (1991). Community knowledge, attitudes and media recall about AIDS, Sydney 1988 and 1989. Australian Journal of Public Health, 15, 107-113.

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Supplementary Memorandum by the National African HIV Prevention (NAHIP) Programme (HAUK 102) a. Is there a risk that stronger campaign messages could increase or encourage stigma around HIV? If so, how can the appropriate balance be struck between reducing stigma and providing a deterrent against HIV transmission? The same study of the Australian ‘Grim Reaper’ campaign found that ‘hard-hitting’ messages could “have...stigmatizing and neurosis-producing results”: it “produced social discord” and “hysterical and exaggerated perceptions of AIDS and potentially social divisive attitudes” and “incited strong negativity among the public”. In 2009, attempts at a strong campaign message in Germany 274 based on the same premise as the ‘Grim Reaper’ campaign (“aids ist ein massenmörder” 275 ), provoked an international outcry as tasteless, inappropriate and “incredibly stigmatising” 276,277 . This shows that there is a very significant risk that such ‘hard-hitting’ campaigns can vilify people living with HIV and incite stigma and discrimination against them and against people who are from countries with high HIV prevalence or from other affected groups, such as MSM. This example from 2009 also shows that these ‘stronger campaign messages’ are still considered stigmatising in the current HIV prevention context. The appropriate balance between reducing stigma and providing a deterrent against HIV transmission can be achieved by presenting comprehensive, accurate facts (e.g. HIV is not a ‘death sentence’ but it is lifelong, incurable and there are limited treatment options); and by greater and meaningful involvement of people living with HIV in campaign design. NAHIP’s new Do It Right campaign 278 has done both of these things to strike the right balance. Behaviour Change 7. The Committee has received evidence that suggests that current prevention campaigns are failing to change the behaviour of those at risk of HIV infection. What is required for health promotion campaigns to change unsafe behaviours? Are these elements lacking in existing HIV prevention campaigns? Health promotion campaigns need to be targeted to a specific, segmented audience, based on formative research, focused on behavioural change (not increased knowledge), designed using behavioural change theories and achieve a high message exposure 279,280 . The following table demonstrates that the elements needed to effect behaviour change are not lacking in NAHIP’s existing HIV prevention campaigns:

274

http://www.time.com/time/health/article/0,8599,1921012,00.html: accessed 26th May 2011 “AIDS is a mass murderer” 276 http://www.pinknews.co.uk/news/articles/2005-13960.html: accessed 26th May 2011 277 http://www.telegraph.co.uk/telegraphtv/6139249/Adolf-Hitler-sex-video-condemned-by-Aids-charities.html: accessed 26th May 2011 278 www.idoitright.co.uk 279 Noar, S.M., Palmgreen P., Chabot M., Dobransky N., Zimmerman R.S. (2009) “A 10-year systematic review of HIV/AIDS mass communication campaigns: Have we made progress?”Journal of Health Communications Feb;14(1):15-42. 280 Healthy Foundations, DH 275

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Supplementary Memorandum by the National African HIV Prevention (NAHIP) Programme (HAUK 102) Elements needed to change unsafe behaviours Targeted audience

Based on formative research

Campaign themes focus on behavioural change (not knowledge)

Designed using behavioural theories

Achieve high message exposure

Use in NAHIP Campaigns All NAHIP campaigns are targeted to Africans living in England aged 16-49, as specified by the DH. The 2008 Do It Right campaign and the earlier It’s Better to Know campaign both provided resources specifically for men and women. With greater investment, NAHIP would segment the population further as we know from research that campaigns are needed for Africans with low levels of education, for young people, for behaviourally LGBT Africans and others. NAHIP uses research extensively in the development of campaigns. This includes, but is not limited to, NAHIP’s Bass Line surveys 281 which were designed to assess the sexual HIV prevention needs of African people in England. One example of this in the new Do It Right campaign is the inclusion of detailed information about PEP (which 36.8% of Bass Line respondents wanted to know more about). NAHIP’s campaigns tend to have high information content because Bass Line has shown that this is necessary. However, direct contact interventions are focused on behaviour change and are designed to deliver this, alongside the campaign aims, in the most effective way possible 282 . NAHIP’s direct contact interventions include 1-to-1 and group therapeutic change. These are focused on behavioural change and skill building outcomes (recent examples include sessions on condom negotiation or declining unwanted sex) and the sessions are designed by trained counsellors or clinical psychologists using behavioural theories. 1-to-1 therapeutic change interventions take place over a series of weeks and start with an assessment to determine how to help the individual change their behaviour. Such assessments are grounded in behavioural theory. These interventions report high outcomes, such as increased self esteem or deciding to start HIV treatment. Greater message exposure typically requires greater investment. NAHIP achieves high message exposure at lower cost by using targeted media and utilising online opportunities to reach the target audience. The 2010 summer mini-testing campaign had 201,222 projected impressions to Africans in the UK. Depending on the population estimate used, this is up to 40% of Africans

281

Department of Health Healthy Foundations Life-stage Segmentation Model (Version 1: April-June 2010) and accompanying electronic resources. 282 Dodds C, Weatherburn P, Owour J, Daodu K, Soomre E (2009) “African HIV prevention Handbook: putting the knowledge, the will and the power into practice” London, Sigma Research.

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Supplementary Memorandum by the National African HIV Prevention (NAHIP) Programme (HAUK 102) in England. Despite adhering to best practice principles for effective behaviour change campaigns, to achieve sustained sexual behaviour change and demonstrate that the campaigns are delivering this, NAHIP requires an investment that is proportionate to the task (see Q3). Behaviour change is dependent on a wide range of factors; including environmental, structural, beliefs, attitudes, intentions and person’s ability to enact behaviour change 283 , and with the current investment of £1-£2 per African person it is simply impossible to have, or expect, a concerted impact on long-term behaviour. With greater investment NAHIP could expand its evidence base, achieve greater message exposure, provide more media interventions and provide more intense interventions that facilitate the necessary levels of knowledge, will and power to choose precaution over risk. Greater investment would also see more robust evaluation so that NAHIP could better demonstrate the impact on behaviour change that its campaigns have. Evaluating campaigns 8. How can the success of health promotion and advertising campaigns be properly measured and evaluated? The NAHIP health promotion and advertising campaigns are externally monitored and evaluated. NAHIP currently spends £150,000 per year on the programme’s evaluation and development. This is contracted to Sigma Research which is an organisation independent to AHPN based at the London School of Hygiene and Tropical Medicine. Contrary to the evidence given in Evidence Session No 18, on Tuesday 17th May to Q931-934, independent evaluation is highly valued in the NAHIP programme. As such, the programme commissions independent researchers for evaluation in exactly the way that the committee recommends. The commissioning for independent researchers is based on a tendering process. To improve the accuracy of the monitoring and evaluation of NAHIP’s work, the monitoring tools have been developed in consultation with the agencies that use them. a. What improvements could be made to the evaluation of HIV prevention campaigns? NAHIP recommends that local HIV prevention campaigns follow NAHIP’s model of independent measurement and evaluation. NAHIP’s KWP website 284 provides examples of the tools used by the NAHIP agencies to help non-partnership agencies improve their own evaluation. Other improvements could include: • Stronger research designs for evaluation outcomes 285 283

E.g. Fishbein, M., Triandis, H. C., Kanfer, F. H., Becker, M., Middlestadt, S. E., & Eichler, A. (2001). Factors influencing behavior and behavior change. In A. Baum, T. A. Revenson, & J. E. Singer (Eds.), Handbook of health psychology (pp. 3–17). Mahwah, NJ: Lawrence Erlbaum. 284 www.kwp.org.uk 285 Noar, S.M., Palmgreen P., Chabot M., Dobransky N., Zimmerman R.S. (2009) “A 10-year systematic review of HIV/AIDS mass communication campaigns: Have we made progress?”Journal of Health Communications Feb;14(1):15-42.

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Supplementary Memorandum by the National African HIV Prevention (NAHIP) Programme (HAUK 102) • • •

Include measures of behaviour in outcome assessments Greater involvement of agencies who are expected to use the tools in development Methodology – expensive for blanket campaigns, hard for targeted campaigns

Improvements to evaluation require adequate investment, which is something often overlooked by funders when there are such tight budgetary constraints on delivering the campaigns themselves. It is important for funders to recognise the value of evaluation and set aside funds for that purpose. With a larger budget it would be feasible to invest more in the kinds of in-depth, face-to-face interventions that change sexual behaviour, and in the research designs that demonstrate the impact of such interventions over time. Tackling Stigma 9. The Committee has heard evidence that suggests stigma remains a problem for people living with HIV. How effective would a campaign aimed at influencing stigmatising attitudes be likely to be? In light of competing priorities around HIV awareness, would you consider such a campaign to be a productive use of limited resources? Given the limited resources directed towards HIV prevention and the significant work being done to reduce stigma outside of campaigns 286 , HIV prevention should remain the priority. This is particularly as there have been attempts at stigma reducing campaigns from very early on in the epidemic 287 , yet stigma remains a huge 288 and growing 289 problem in the UK. This suggests that it is difficult to create an effective campaign aimed at influencing stigmatising attitudes, so it is unlikely to be the most productive use of limited resources. HIV prevention work should represent a more productive use of limited resources because prevention work has a knock-on effect in reducing stigma: earlier diagnosis, less undiagnosed infection, greater understanding of transmission paths etc. reinforce that HIV is a manageable, long-term condition which cannot be transmitted through normal social contact. Prevention campaigns also increase public exposure to prevention messages; increase the visibility of HIV; increase the availability of accurate information and provide a stimulus for discussion, all of which will contribute to reducing stigma. However, this is unlikely to be achieved by ‘hard-hitting’ campaigns, which usually produce the opposite effect (see Q6a). A forthcoming Stigma Index Study has shown that stigma and discrimination in the UK “impede on the ways in which migrants exercise their rights to HIV-related care and support” 290 . Stigma can be a barrier to successful prevention work, particularly when people feel they cannot access services such as HIV testing. Therefore, NAHIP would support a campaign aimed at influencing stigmatising attitudes funded 286

E.g. NAT’s Press Gang; The Stigma Index Studies; International Labour Office (2010) Recommendation concerning HIV and AIDS and the World of Work (Number 200) and the Disability and the Equality Act 2010 287 for example, “I have AIDS please hug me – I can’t make you sick” campaign in the US in 1987 288 Forthcoming report: Chinouya, M., Hildreth, A., Goodall, D., and Inegbenebor, D., Migrants and HIV stigma: findings from the stigma index study (UK) Due for publication July 2011. 289 http://www.nat.org.uk/Media%20library/Files/Communications%20and%20Media/HIV_awareness_report_201 1DOWNLOAD.pdf: Accessed 2nd June 2011 290 Forthcoming report: Chinouya, M., Hildreth, A., Goodall, D., and Inegbenebor, D., Migrants and HIV stigma: findings from the stigma index study (UK) Due for publication July 2011.

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Supplementary Memorandum by the National African HIV Prevention (NAHIP) Programme (HAUK 102) separately from existing HIV prevention work. For this to be a productive use of resources, it would need to be delivered in a supportive policy environment; developed with great and meaningful involvement from people living with HIV; recognise the wider social determinants of health and target the general population291 . Delivery and new technologies 10. Evidence received by the Committee has suggested that current HIV prevention campaigns suffer from an over-reliance on written materials. What, in your experience, is the most effective medium for delivering health promotion campaigns? The structure of NAHIP follows a model suggested to be the most effective for delivering health promotion campaigns to effect behaviour change. This is known as a ‘multicomponent’ campaign. It recognises that mass media alone cannot change behaviour and that a campaign must be delivered in multiple-settings, through multiple mediums, at the local and individual level 292 . For NAHIP, this means that campaigns are delivered through prevention interventions in a variety of settings using varied mediums. In the past this has seen mass media aspects of a campaign (such as TV and radio advertising) supported by small media (e.g. small cards and knick-knacks) which have been disseminated interactively to individuals through direct contact interventions delivered by NAHIP’s local agencies. In 2010, resources associated with the Do It Right campaign were distributed at 665 NAHIP interventions. In addition, campaign material is provided to be used in group work (e.g. Do It Right’s film series Kobana’s Stories) or interactively by individuals online (the Do It Right website hosted an interactive quiz). By relying on differing distribution techniques and mediums, NAHIP has avoided over reliance on written resources. NAHIP bases decisions on which medium to use depending on the target audience, the campaign message and behaviour change objectives. Recently, NAHIP has had some success in driving calls to the helpline using radio advertising which has been more effective than the use of written materials in this instance. Delivering a ‘multicomponent’ campaign increases the cost and complexity of organising and executing the campaign. However, they are thought to have a greater effect on behaviour change as the consistent campaign messages are delivered to the audience in the public domain and individually. The following diagram from www.kwp.org.uk shows the relationships between the cost, efficacy and reach of the direct contact interventions that NAHIP delivers. NAHIP attempts to achieve a balanced, effective multicomponent campaign by delivering a range of the interventions to provide optimum coverage through a mixture of intensive 1-to-1 interventions (at the top of the pyramid) and wide reaching mass media interventions (at the bottom): 291

Forthcoming report: Chinouya, M., Hildreth, A., Goodall, D., and Inegbenebor, D., Migrants and HIV stigma: findings from the stigma index study (UK) Due for publication July 2011. 292 Noar, S.M., Palmgreen P., Chabot M., Dobransky N., Zimmerman R.S. (2009) “A 10-year systematic review of HIV/AIDS mass communication campaigns: Have we made progress?”Journal of Health Communications Feb;14(1):15-42.

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Supplementary Memorandum by the National African HIV Prevention (NAHIP) Programme (HAUK 102)

11. We have heard that previous campaigns have not lasted long enough to ensure that messages reach their targets. How sustained must campaigns be to be effective? Campaign duration needs to strike a balance between adequate exposure and audience saturation. NAHIP is attempting to achieve the right balance with the revamped Do It Right campaign. The campaign has kept the title Do It Right to keep a clear identity and brand and build on existing target audience recognition. This will act as a sustained, umbrella title underneath which NAHIP intends to deliver shorter, more targeted campaigns. This aims to give the Do It Right campaign longevity whilst keeping the target audience interested with changing messages. It enables the campaign to respond to external circumstances to ensure it is always relevant, up-to-date and appropriate. However, increasing the duration of a campaign also increases the cost. 12. How could new technologies, including the internet and mobile phone applications, be better utilised in prevention campaigns? NAHIP has introduced new technologies as part of the revamp of the Do It Right campaign, both to provide information and to support direct contact interventions (e.g. by providing online alternatives to a telephone helpline). The decision on whether and how to use internet and mobile phone applications was based on findings that show this is appropriate for NAHIP’s target audience, including Ofcom reports 293 , Bass Line findings 294 and focus group discussions. It is thought that the “interactivity of such

293

 Ethnic Minorities: At the forefront of digital communications in the UK presented at Media Guardian Ethnic  Media Summit on 16 September 2008. Slides available at: http://media.ofcom.org.uk/2008/09/16/ethnic‐ minorities‐at‐the‐forefront‐of‐digital‐communications‐in‐the‐uk/ 294 Hickson F, Owuor J, Weatherburn P, Dodds C, Reid D, Hammond G, Jessup K (2009) “Bass Line 2008 -09 survey: assessing the sexual HIV prevention needs of African people in England”: p34: 40.8% of respondents stated that they would like to learn more about HIV by reading websites. 29

Supplementary Memorandum by the National African HIV Prevention (NAHIP) Programme (HAUK 102) programs may help to build skills and foster behavioural changes” 295 , showing that this is an area likely to expand in prevention campaigns. a. How can the use of internet applications be properly managed and coordinated, to ensure consistency and quality of provision? NAHIP has collaborated with NAM to ensure that the provision of online information for NAHIP campaigns is up-to-date, accurate and consistent with NAM’s award-winning HIV treatment and prevention information. NAM is a certified member of the Information Standard. This process is managed by the NAHIP programme and falls under NAM’s contract as a NAHIP agency. Like any organisation, NAHIP can only manage its own internet content to ensure consistency and quality. The use of external internet applications, like social media (i.e. Facebook, Twitter or forums), to campaign is time-intensive and difficult, or sometimes impossible, to manage. Where NAHIP has decided to campaign using external internet applications, careful provisions have been made to use the helpline staff to monitor online activity, as well as regular overview from within AHPN. Oversight and coordination of campaigns 13. Should HIV prevention campaigns be locally or nationally led and delivered? For campaigns targeted to the UK’s African population, HIV prevention campaigns need to be nationally led and locally delivered. National leadership is necessary to ensure: • Consistency in HIV prevention messages and the creation of a clear national campaign identity to provide continuity for a very mobile population. This includes providing a clear strategic direction for all local delivery agencies to follow. • Greater accountability: A national leader is able to be fully accountable for funding, despite the complexities of delivering a multicomponent campaign. This may be increasingly complicated at a local level and increase the monitoring burden that small community based organisations face. • Greater value for money through the development of resources and interventions at a national level, which can then be adapted locally. NAHIP ensures that local adaptation is possible within national cohesion by engaging its agencies throughout the development process, from planning to delivery. • That Africans who do not live in areas with high African population density still have access to the best information about HIV and how to access services regardless of whether there are local community based organisations in their area A specialist agency, like the AHPN, which understands the African population needs to lead the process of campaign development to ensure that the messages are appropriate, acceptable and targeted to the right behaviour change nationwide. 295

Noar, S.M., Palmgreen P., Chabot M., Dobransky N., Zimmerman R.S. (2009) “A 10-year systematic review of HIV/AIDS mass communication campaigns: Have we made progress?”Journal of Health Communications Feb;14(1):15-42. From Noar, S. M., Clark, A., Cole, C., & Lustria, M. (2006). Review of interactive safer sex websites: Practice and potential. Health Communication, 20(3), 233–241. Bull, 2008; Noar, 2009.

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Supplementary Memorandum by the National African HIV Prevention (NAHIP) Programme (HAUK 102) Local tailoring is imperative in delivering HIV prevention campaigns to the ‘African population’ as Africans in the UK represent a huge variety of nationalities, cultures, religions and languages and cannot be considered one homogeneous group. Local tailoring is achieved through a network of local delivery agencies. NAHIP’s response to local need has ranged from agencies delivering workshops in African languages to engaging with a particular community for a culturally specific celebration (e.g. an Independence Day parade). This ‘nationally led, locally delivered’ strategy fits perfectly with NAHIP’s multicomponent campaigning (see Q10) as it encourages delivery of campaigns at the individual as well as mass media level. Engaging organisations who understand this is fundamental to the success of delivering targeted prevention work. a. How could a joint approach across both the national and local levels be managed and coordinated? NAHIP currently coordinates HIV prevention campaigns in exactly the way described. There is a need to have a national agency, such as the AHPN, which understands the target audience through its detailed, experienced understanding of the complex needs of Africans living in England, and has the ability to coordinate and understand local delivery. To deliver locally, NAHIP commissions smaller, mostly African-led, community based organisations which deliver campaigns and other prevention interventions in their locality to individuals and groups. There also needs to be coordination between programmes, such as NAHIP and CHAPS, and clinicians, commissioners and NHS managers, to ensure that consistent messages are being promoted everywhere. Local delivery needs to be supported by local services providing consistent clinical services (i.e. there is little value in having a national campaign promoting PEP if its availability is inconsistent across various regions in England). The current coordination has allowed NAHIP to set strategic priorities that reflect that neither sexual HIV risk nor unmet HIV prevention need is evenly distributed. These priorities are clearly described in “The Knowledge, The Will and The Power”: NAHIP’s strategic plan of action to meet the HIV prevention needs of Africans living in England 296 , which drives the programme towards achieving its shared goal of minimising the number of sexual HIV acquisitions and transmissions involving African people living in England. This has enabled a clear, joint approach between national leadership and local tailored delivery to manage a programme that best serves the HIV prevention needs of Africans in England. This joint approach is the most efficient and effective use of limited resources, targeting HIV prevention interventions to those most likely to benefit. Evidence submitted on behalf of the National African HIV Prevention (NAHIP) Programme by: Jabulani Chwaula, Programme Manager, African Health Policy Network Joanna Moss, Programme Development Officer, African Health Policy Network

296

See www.kwp.org.uk

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Supplementary Memorandum by the National African HIV Prevention (NAHIP) Programme (HAUK 102) Thank you to Francis Kaikumba (CEO, African Health Policy Network), Eunice Sinyemu (Deputy CEO and Head of Policy, African Health Policy Network), Diana Inegbenebor (Policy and Research Assistant, African Health Policy Network) and Peter Weatherburn (Director, Sigma Research). Special thanks to the NAHIP agencies who contributed to this submission via consultation. 7 June 2011

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Memorandum by NAT (the National AIDS Trust) (HAUK 47)

Memorandum by NAT (the National AIDS Trust) (HAUK 47) Summary of Conclusions and Recommendations: A National Strategy for HIV i.

NAT recommends that the Government publish a national strategy for HIV which addresses HIV from the perspectives of sexual health, long-term condition management, and human rights and equality. The strategy should be multi-sectoral and there should be a consultation process before its finalisation. (para.8)

Monitoring and Advice ii.

The resources dedicated to HIV and sexual health surveillance should be maintained, and indeed increased, given the level of need. It should be clearly stated that this work is a public health 'frontline service', rather than simply back office or administrative. (para.10)

iii.

The independence of this public health function needs to be protected, ideally in legislation. This extends to what is surveyed, the timing and content of published data and analysis, the initiation of projects and the interpretation of data/information. (para.10)

iv.

The Health Protection Agency (HPA) services once subsumed within Public Health England should remain open to external bodies to approach for advice and support around relevant data and their interpretation. The current transparent and helpful public service ethos is one which should be preserved. (para.10)

v.

The Government plans to establish an internal advisory group on sexual health and HIV. NAT hopes this body will work in an open way, able to publish its deliberations and advice should it wish to do so. (para.12)

Prevention vi.

A consensus must be reached within the HIV sector and across the NHS and Government as a matter of urgency as to how to evaluate HIV prevention work focussing on outcomes (such as behaviour change or new infections), and as to what constitutes prevention success. We also need an appropriate level of investment in the monitoring of success. (para.17)

vii.

If local authorities are to commission GU services, funding for this purpose should be calculated and provided separately (though also protected by a ring-fence) from the ring-fenced fund for health improvement. It should be made clear that local authorities are expected to fund health improvement work around sexual health and HIV additional to the core GU service being commissioned. (para.20)

viii.

NAT strongly believes that a national HIV prevention programme situated within Public Health England must be maintained. (para.21)

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Memorandum by NAT (the National AIDS Trust) (HAUK 47) ix.

The national HIV prevention programme should be managed by Public Health England with strategic advice from all key stakeholders, including the voluntary sector, epidemiologists, social/behavioural scientists and clinical staff. (para.21)

x.

NAT recommends that the HIV prevention needs of Caribbean communities be included within the remit of the national HIV prevention programme(s). (para.22)

xi.

Public Health England should re-examine HIV prevention work amongst IDUs, drawing on the expertise of staff from the HPA and the National Treatment Agency (NTA) who will have been brought into the department, as well as external experts. The national HIV prevention programme should address the prevention needs of IDUs, in particular gaps in HIV testing, safer sex advice and needle exchange within drug treatment services. (para.24)

xii.

NAT recommends that there be a pilot of prison needle exchange in an English prison at the earliest opportunity. (para.26)

xiii.

A number of approaches would be useful to help prevent HIV transmission amongst the wider public: • •

• •

We should integrate HIV information and advice into wider sexual health work (by contrast, the last DH television campaign for condom use, ‘Essential Wear’, did not mention HIV amongst the STIs to be prevented) We should consider in areas with high HIV prevalence (for example, parts of London) wider HIV prevention work amongst the general public which will both be another way of reaching those in most at-risk groups but also others who may be at risk. We should introduce consistent high-quality sex and relationships education in all schools which teaches fully and effectively the facts of HIV and how to prevent transmission, as well as the wider social issues involved. We should encourage more and better quality of reporting on HIV in the media. (para.30)

xiv.

Improved HIV testing, adherence to medication for those diagnosed positive and the avoidance of untreated STIs are now important prevention goals. (para.31)

xv.

UK prevention work must address not just condom use but also partner numbers as key factors in reducing risk of HIV transmission. (para.31)

xvi.

Renewed effort is necessary to educate people as to why HIV remains a serious lifelong condition to be avoided, even with effective treatment available. Such information must not use fear or exaggeration, nor stigmatise people with HIV, but just communicate the facts. (para.31)

Testing xvii.

It is important, given the success of the testing pilots, that the Government formally endorse the UK National Guidelines on HIV testing ('the UK Guidelines') as the testing policy to be implemented across the NHS. One reason for this is that responsibility for HIV testing will quite possibly be fragmented across different 34

Memorandum by NAT (the National AIDS Trust) (HAUK 47) commissioning bodies – the NHS Commissioning Board, local authorities and GP consortia. Clarity in our HIV testing strategy is vital. (para.37) xviii.

Interventions should be funded to communicate to MSM the importance of testing for HIV at least once a year, and more frequently according to risk. The HIV sector should also agree as soon as possible recommendations on frequency of HIV testing for African communities in the UK. (para.40)

xix.

More work must be done to increase knowledge of symptoms of primary HIV infection in most affected groups and encourage HIV testing where such symptoms occur. It is also important to increase knowledge of primary infection amongst healthcare workers, especially those in primary and emergency care, where currently symptoms are commonly missed. (para.41)

xx.

HIV testing should be routinely offered in high prevalence areas in general and acute medical admissions and to newly registering GP patients. These have been demonstrated to be cost-effective and acceptable to healthcare staff and patients alike. NICE Guidance should reflect the UK Guidelines on this point. The NHS Commissioning Board and GP consortia should commission accordingly. (para.45)

xxi.

It is essential that NICE Guidelines for relevant secondary care specialties include routine HIV testing as recommended by the UK Guidelines and that GP consortia consistently commission to these standards. (para.46)

xxii.

More consideration is needed of how to integrate community testing into the local ‘health economy’. In particular, it is important to identify how community testing can not only provide convenience but also reach people for testing who would otherwise not seek an HIV test. (para.47)

xxiii.

Further exploration of home sampling within the NHS is needed – in particular, hardpressed GU clinics could consider home sampling as a means of triaging those wishing to have an HIV test. (para.48)

xxiv.

Home testing for HIV should be legalised and regulated, and integrated into strategies to increase HIV testing take-up. (para.50)

xxv.

Mandatory HIV testing should not be introduced in any form. (para.53)

Treatment xxvi.

The NHS Commissioning Board will inevitably be removed from experience at local and clinic level. If possible, some regional/'supra-local' based structuring of its commissioning of HIV treatment would ensure flexibility and responsiveness to the situation on the ground. (para.57)

xxvii. Healthcare planning will take place at the local level in the proposed Health and Well-being Boards. It is not clear how those whose healthcare is commissioned by the NHS Commissioning Board will have their interests and needs represented at these Boards around the country. (para.58)

35

Memorandum by NAT (the National AIDS Trust) (HAUK 47) xxviii. There has been real progress of late in integrating sexual health services. Government proposals separate out the commissioning of HIV treatment and care (NHS Commissioning Board) from local sexual health services (local authority commissioning). The danger is a return to fragmented and uncoordinated (and thus more expensive) services - explicit and proactive steps will need to be taken to counteract such a consequence. (para.59) xxix.

The NHS Commissioning Board's role in HIV commissioning should not be seen as a defence of the status quo in how HIV treatment is configured and provided. It may be the opportunity to implement real change. For example, the NHS Commissioning Board could require greater involvement of GPs in the care of stable HIV patients. (para.60)

xxx.

Performance of the NHS Commissioning Board in these responsibilities will need to be measured and assessed by the Secretary of State. Outcome measures should be agreed which demonstrate high quality HIV treatment and care, perhaps developing and applying nationally those developed for London with support from the HPA. (para.61)

xxxi.

There is a danger in the current 'drive to the local' that outcomes of care, whether healthcare or social care, for often marginalised minorities get lost in the bigger picture. It remains very unclear what 'must do' there is at the local level to ensure that there is the political will to meet the needs of groups such as people with HIV, or gay men or African migrants. (para.67)

xxxii. A key support will be early development of NICE guidance for HIV healthcare and social care against which we can assess performance and quality. Such guidance should identify how HIV outpatient care and social care are provided and joined up, but also how these are integrated with other essential provisions such as appropriate psychological support, which is currently so patchy across the country. (para.68) xxxiii. With a high proportion of people with HIV within the immigration system, significant levels of severe poverty (between 2006 and 2009 one in six of all people with HIV had to access the charitable support of the Hardship Fund for emergency assistance), and disproportionately poor mental health, the planned national strategy must involve key relevant government departments. In particular for HIV treatment and care to be effective we need: • • •

An immigration system which consciously and proactively supports access to treatment and adherence (including during dispersal, detention and removal) A benefits system which assesses people with HIV fairly and accurately, which supports those who can work back into employment, and which makes decisions on, and provides, benefits promptly and efficiently A healthcare system which acknowledges the elevated mental health needs of people with HIV, funds appropriate services and introduces joined-up commissioning and referral. (para.69)

36

Memorandum by NAT (the National AIDS Trust) (HAUK 47) Stigma and discrimination xxxiv. The Government should as part of a national strategy for HIV develop a clear multisectoral approach to tackling HIV stigma and discrimination. This should include: • • • •

commitment to anti-stigma training across all of the NHS, with a particular emphasis on primary care the inclusion of education on HIV and the unacceptability of stigma and discrimination in all schools' curricula support for people with HIV in knowledge of their rights and of protections against discrimination, in personally dealing with stigma as well as in disclosure of HIV status innovative work to improve public awareness, including • better use of World AIDS Day to promote awareness and understanding, • identifying high profile ‘champions’, • supporting and empowering people with HIV to share their stories and experiences, • engagement with the media, and • regular surveys of public attitudes and understanding. (para.78)

xxxv. NAT recommends that the Committee support the exemption of people with HIV from NHS treatment charges irrespective of residency status. (para.81) xxxvi. NAT recommends that as part of a wider and concerted effort to remove HIV stigma and discrimination from the NHS, that the current 'blanket' occupational exclusions are ended on HIV positive healthcare workers engaging in any invasive procedure. (para.83) xxxvii. NAT believes that current occupational restrictions around the employment of people with HIV in the armed services are discriminatory and should end. (para.85) A.

Introduction

1.

NAT (the National AIDS Trust) welcomes the inquiry of the House of Lords Select Committee into HIV and AIDS in the UK, and is grateful for the opportunity to provide written evidence to complement the oral evidence already given.

2.

NAT is the UK's leading charity dedicated to transforming society's response to HIV. We provide fresh thinking, expert advice and practical resources. We campaign for change. All our work is focused on achieving four strategic goals: • • • •

3.

effective HIV prevention in order to halt the spread of HIV early diagnosis of HIV through ethical, accessible and appropriate testing equitable access to treatment, care and support for people living with HIV, and eradication of HIV-related stigma and discrimination.

This submission addresses issues for the most part in the order set out in the Committee's call for evidence. We comment only on those areas where we have, 37

Memorandum by NAT (the National AIDS Trust) (HAUK 47) we trust, relevant points to make on the basis of our work. We do of course believe that all the issues in the call for evidence are of immense importance. B.

A National Strategy for HIV

4.

The last national strategy for sexual health and HIV was published in 2001 and was in place until 2010. It was an extremely important resource and template against which sexual health activity in England could be planned and assessed. NAT welcomes the recent Government commitment to publish in the Spring a sexual health strategy, which will certainly address HIV. A great deal has changed over the last decade in the UK HIV epidemic, in testing and treatment as well as in the legal framework, and this must all be reflected in any new strategy. It is not, however, clear whether the Government's strategy will cover HIV in the breadth and depth required. A strategic approach to HIV must not only consider the condition from a sexual health perspective, but also as a long-term condition, and as a human rights and equalities issue.

5.

Furthermore, an HIV strategy cannot simply be a strategy for the Department of Health but must be genuinely multi-sectoral, involving and securing commitments from such departments as the Department for Work and Pensions, the Department for Education, the Ministry of Justice, the Home Office, to name a few. We hope this submission makes clear why such a mutli-sectoral approach is needed - it is also an explicit requirement of the UNGASS Declaration of Commitment on HIV/AIDS, to which the UK is a signatory.

6.

A final essential component of any national HIV strategy is the involvement of civil society and, most importantly people with HIV, in its development and production. It is therefore very important that any strategy published by the Department of Health is in draft form and open to consultation to allow such involvement.

7.

We also hope that the national strategy will take into account the findings and recommendations of the Committee, which given timings may be another reason to emphasise a consultation period for any strategy produced this year by the Department.

8.

NAT recommends that the Government publish a national strategy for HIV which addresses HIV from the perspectives of sexual health, longterm condition management, and human rights and equality. The strategy should be multi-sectoral and there should be a consultation process before its finalisation.

C.

Monitoring and Advice

9.

The UK has one of the best HIV surveillance systems in the world. It is a vital tool in enabling Government (both national and local), the NHS and the voluntary sector to assess need, and identify trends over time (for example the proportion of people undiagnosed, or diagnosed late, and the relative burden of HIV on key communities such as men who have sex with men (MSM) or Africans). The Government plans to end the separate (and statutory) existence of the Health Protection Agency (the body responsible for this surveillance system) and subsume its functions within Public 38

Memorandum by NAT (the National AIDS Trust) (HAUK 47) Health England, itself to be part of the Department of Health. This will be effected by the Health and Social Care Bill currently before Parliament. 10.

A number of concerns need to be addressed: The resources dedicated to HIV and sexual health surveillance should be maintained, and indeed increased, given the level of need. It should be clearly stated that this work is a public health 'frontline service', rather than simply back office or administrative. The independence of this public health function needs to be protected, ideally in legislation. This extends to what is surveyed, the timing and content of published data and analysis, the initiation of projects and the interpretation of data/information. The Health Protection Agency (HPA) services once subsumed within Public Health England should remain open to external bodies to approach for advice and support around relevant data and their interpretation. The current transparent and helpful public service ethos is one which should be preserved.

11.

The work of the National Treatment Agency (NTA) is also being brought into Public Health England and we do of course hope that similar safeguards apply to their work supporting injecting drug users, particularly in relation to evidence-based approaches.

12.

The Government has abolished the Independent Advisory Group on Sexual Health and HIV (IAG) which was an authoritative, transparent and highly respected source of advice to Government on sexual health and HIV, as well as an invaluable forum for key representatives in the sector to meet and share ideas and information. The Government plans to establish an internal advisory group on sexual health and HIV. NAT hopes this body will work in an open way, able to publish its deliberations and advice should it wish to do so.

D.

Prevention

13.

The national strategy for HIV and sexual health in place from 2001 to 2010 included a section on ‘Better Prevention’ which had as its overall target a reduction by 25% in the number of newly acquired HIV infections by 2007. The relevant section of the national strategy contained useful and important commitments, including to target HIV prevention at groups particularly affected, not to allow discrimination to impede prevention work, and to address undiagnosed infection. For all that, new diagnoses of UK-acquired HIV in the UK have risen significantly over the last decade and it is estimated that overall expenditure on HIV prevention has probably declined in the same period. 297 Successive Governments deserve credit for maintaining national HIV prevention programmes for HIV and an evidence-based and ethical framework to address the epidemic.

14.

There were, however, a number of problems with HIV prevention over the last ten years, which now need to be addressed as we move forward.

297

'Commissioning HIV Prevention Activities in England', NAT 2007

39

Memorandum by NAT (the National AIDS Trust) (HAUK 47)

Lack of evidence of success: 15.

The national strategy target was to reduce new infections, i.e. HIV incidence. It was agreed, however, at a time when there was no way of calculating new HIV infections year on year. New HIV diagnoses were not an accurate picture of new infections since people could have HIV for many years prior to diagnosis. Agreeing a target which was unmeasurable was not helpful. But it was symptomatic of a wider difficulty – how to evaluate and measure success. A decade later we still have not reached agreement as a sector on this point. The danger is, even if we have good reason to believe our work is effective, the absence of agreed measures of impact result in a wider loss of confidence in HIV prevention work. Evaluation of national prevention programmes, for example, has focussed on recognition of prevention materials rather than behaviour change.

16.

It is difficult to measure the impact of HIV prevention work but more can certainly be done, and recently developed technologies, such as RITA testing, offer the prospect of a more accurate picture of incidence.

17.

A consensus must be reached within the HIV sector and across the NHS and Government as a matter of urgency as to how to evaluate HIV prevention work focussing on outcomes (such as behaviour change or new infections), and as to what constitutes prevention success. We also need an appropriate level of investment in the monitoring of success.

Lack of local incentives for HIV prevention work: 18.

There have not in recent years been national targets or measures to incentivise investment in HIV prevention at the local level. The result has been resources have moved away from HIV, which was not a ‘must-do’, to other services. Local PCTs disinvested over time from HIV prevention, relying for funding on the national HIV prevention programmes which were only ever meant to catalyse and support HIV prevention work, not substitute for local action. 298 The draft Public Health Outcomes Framework currently out for consultation has no indicator which will incentivise HIV prevention work.

19.

Under the Government's new proposals, HIV prevention is to be funded at the local level by local authorities from their ring-fenced health improvement budget. This budget is also, however, to fund GU services as well as wider public health interventions in smoking, obesity, alcohol and so on. In the absence of a prevention outcome indicator it is difficult to see whether many local authorities will fund targeted HIV prevention to most at-risk communities. GU services are an essential element of NHS secondary care provision. Putting aside arguments over whether local authorities should be commissioning GU services, it does seem wrong for funds for this service to be taken out of the ring-fenced health improvement budget, which was designed precisely to encourage longer-term preventive interventions and protect such investment in 'wellness' from the urgent demands of acute care.

298

See 'Building on progress: enhancing the response to HIV in England', Independent Advisory Group on Sexual Health and HIV 2009

40

Memorandum by NAT (the National AIDS Trust) (HAUK 47)

20.

If local authorities are to commission GU services, funding for this purpose should be calculated and provided separately (though also protected by a ring-fence) from the ring-fenced fund for health improvement. It should be made clear that local authorities are expected to fund health improvement work around sexual health and HIV additional to the core GU service being commissioned.

The National HIV Prevention Programmes: 21.

National oversight of targeted prevention to gay and African communities is entrusted to the two national HIV prevention programmes, CHAPS for MSM and NAHIP for African men and women. At the time of writing it is unclear how they will go forward in the context of current public health reforms. With the current emphasis on localism there is some concern as to their future – NAT strongly believes that a national HIV prevention programme situated within Public Health England must be maintained. At the local level HIV numbers always remain low compared with more common health conditions. Although HIV may be severely affecting certain minority groups it is unlikely they will have a strong political voice, both because of their minority status and because of issues of stigma and prejudice. Furthermore, there are immense advantages to the national ‘economy of scale’ when it comes to expertise and resources to analyse need, plan models of intervention and develop resources. Whether there should continue to be two separate national HIV prevention programmes or a single programme with various elements is something for further consideration – a single national HIV prevention programme would have the advantage of also addressing other emerging elements of prevention need (see below). The national HIV prevention programme should be managed by Public Health England with strategic advice from all key stakeholders, including the voluntary sector, epidemiologists, social/behavioural scientists and clinical staff.

Caribbean communities: 22.

299

HIV prevalence amongst black Caribbean communities is much lower than for example in African communities, but is nevertheless three times that of the wider British population. There are also elevated rates of other STIs. This disproportionately high prevalence of HIV is found amongst both heterosexual and homosexual Caribbeans, and is partly acquired overseas but also driven by ongoing infection in the UK. There is currently no strategic approach to meeting the HIV prevention needs of these communities nor are there dedicated funds for such a purpose. 299 NAT recommends that the HIV prevention needs of Caribbean communities be included within the remit of the national HIV prevention programme(s).

For more detail see 'HIV and black Caribbean communities in the UK', NAT 2010

41

Memorandum by NAT (the National AIDS Trust) (HAUK 47) Injecting Drug Users: 23.

HIV prevalence amongst injecting drug users (IDUs) has remained low, particularly when compared with that in other countries. This is in large measure because from the outset of the epidemic there was a strong emphasis on such harm reduction measures as provision of clean needles and injecting equipment, and of opiate substitution treatment (OST), for example methadone maintenance. Recent studies have identified areas for improvement – in particular more consistent accessibility of HIV (and other BBV) testing, and clean injecting equipment, in drug treatment services, and also the provision of safer sex advice in these services. 300

24.

Moreover, HIV prevalence amongst IDUs in London is approaching 4%, the threshold at which UNAIDS considers there are real concerns of an expanding epidemic, and equivalent to prevalence in MSM and African communities nationally. It is important therefore to avoid complacency. Public Health England should re-examine HIV prevention work amongst IDUs, drawing on the expertise of staff from the HPA and the NTA who will have been brought into the department, as well as external experts. The national HIV prevention programme should address the prevention needs of IDUs, in particular gaps in HIV testing, safer sex advice and needle exchange within drug treatment services.

25.

There is a current Government emphasis on recovery from addiction which, though well-motivated, needs to be considered with care. Pressure on IDUs to move on from OST can result in a return to addicted and chaotic lifestyles. For those diagnosed with HIV, moving off OST can undermine adherence to HIV treatment and thus harm the individual’s health and increase their risk of infecting others.

26.

There is also a serious failure in HIV prevention for those IDUs (a significant proportion) who at some time enter prison. Prison does not mean necessarily the end of injecting drug use but it is done unsafely, thus increasing the risk of HIV and Hepatitis transmission. At present provision of clean injecting equipment is forbidden in UK prisons. Disinfectant tablets are available but they are acknowledged to be inferior as means of preventing BBV transmission from shared injecting equipment. The principle of comparable healthcare in prisons to that in the community is breached in denying prisoners this essential preventive intervention for those who inject drugs. Experience of such prison needle exchange programmes, for example in Spain, shows decrease in drug use, decrease in harms and no instance of attacks with needles. NAT recommends that there be a pilot of prison needle exchange in an English prison at the earliest opportunity.

Prevention and the wider public: 27.

300

It is also increasingly apparent that we need to look again at HIV prevention for the public as a whole. Of course HIV prevalence outside those groups most at risk remains very low. But it is estimated that in 2009 of all UK-acquired infections diagnosed, approaching a quarter were neither amongst MSM nor African men or women. In other words, they were of people who are not currently served by either of the two national HIV prevention programmes.

For more extended consideration of these issues see 'Injecting drug users and HIV', NAT 2010

42

Memorandum by NAT (the National AIDS Trust) (HAUK 47)

28.

It does not seem to be cost-effective to undertake, for the whole population, the sort of intensive work being advocated for gay and bisexual men and for African communities, given the low prevalence amongst the general public. But for those infected HIV will be a lifelong health burden and the costs to the public purse of these HIV transmissions are significant. We have to identify ‘smart’ ways of reaching the general public with HIV prevention messages.

29.

The need for this is underlined by the surveys undertaken by Ipsos MORI for NAT of public understanding of, and attitudes to, HIV. 20% of people do not know that HIV is transmitted by sex without a condom between a man and a woman. This is a decline of 10% from ten years ago, when 90% knew this fact. 301

30.

A number of approaches would be useful to help prevent HIV transmission amongst the wider public: •

•

•

•

We should integrate HIV information and advice into wider sexual health work (by contrast, the last DH television campaign for condom use, ‘Essential Wear’, did not mention HIV amongst the STIs to be prevented). We should consider in areas with high HIV prevalence (for example, parts of London) wider HIV prevention work amongst the general public which will both be another way of reaching those in most at- risk groups but also others who may be at risk. We should introduce consistent high-quality sex and relationships education in all schools which teaches fully and effectively the facts of HIV and how to prevent transmission, as well as the wider social issues involved. We should encourage more and better quality of reporting on HIV in the media.

Developing our prevention strategies: 31.

Improving HIV prevention is not just about incentivising action and funding, identifying outcomes, and targeting the right people, it is also about looking innovatively at our interventions themselves. The increasing awareness that HIV treatment reduces viral load to levels which make transmission extremely unlikely is profoundly changing prevention strategies - improved HIV testing, adherence to medication for those diagnosed positive and the avoidance of untreated STIs are now important prevention goals. 302 In addition, • •

UK prevention work must address not just condom use but also partner numbers as key factors in reducing risk of HIV transmission. 303 Renewed effort is necessary to educate people as to why HIV remains a serious life-long condition to be avoided, even with effective treatment available. Such information must not use fear or

301

'HIV: Public Knowledge and Attitudes, 2010', NAT 2011 'Towards a UK consensus on ART and HIV transmission risk', NAT 2010 303 'Partnership Patterns and HIV Prevention amongst MSM', NAT 2010 302

43

Memorandum by NAT (the National AIDS Trust) (HAUK 47) exaggeration, nor stigmatise people with HIV, but just communicate the facts. E.

Testing

32.

As with HIV prevention the high rates of late diagnosed and undiagnosed HIV in the UK strongly suggests that more needs to be done in terms of testing for HIV. The HPA estimates that 26% of people in the UK with HIV are undiagnosed.304 52% of those diagnosed in 2009 were diagnosed ‘late’, that is after the point at which they should have started treatment, and 30% were diagnosed ‘very late’ with a CD4 count of less than 200 (roughly equivalent to eight years undiagnosed on average). 73% of those with HIV who died in 2009 had been diagnosed late. NAT is part of the ‘Halve It’ campaign, which brings together voluntary and private sector organisations, clinicians and epidemiologists with the aim of campaigning for a national response which will halve the proportion of people diagnosed late and the proportion of those with HIV who are undiagnosed.

33.

The approach to HIV testing has been revolutionised by a number of factors in recent years. One is the increasing effectiveness of HIV treatment in keeping people well and enabling a near normal life expectancy – but this crucially depends on the individual being diagnosed in time, before their immune system is irreparably and seriously harmed by HIV. Late diagnosis makes an early death more likely, as well as serious and complex illness, which it is much more difficult and costly to treat. Moreover, we now know that HIV treatment can reduce infectiousness to near zero – early diagnosis and treatment is thus a vitally important preventive measure. Finally, developments in testing technology make HIV testing faster, more reliable and less invasive, increasing the accessibility and acceptability of the test.

34.

The primary model for HIV testing in the UK has traditionally been ‘opt-in’ where the person must proactively agree to any offer of an HIV test. Furthermore, most HIV testing was sought out at sexual health clinics by those wanting a diagnosis. Therefore, historically, testing has been predominantly restricted to sexual health and community clinics.

35.

Change began in 2000 with routine opt-out HIV testing in ante-natal care. Research has shown this approach to be acceptable and very few women opt out.305 The result has been earlier diagnosis of women with HIV and the prevention of motherto-child transmission.

36.

The model pioneered in ante-natal care of a routine opt-out HIV test in a healthcare setting was picked up and applied more widely by the UK National Guidelines for HIV Testing 2008, developed by BHIVA, BASSH and BIS, which recommend that HIV testing should be routine and opt-out in specific healthcare settings such as STI clinics, antenatal services, drug dependency programmes and healthcare services for those diagnosed with certain clinical indicator conditions including tuberculosis and hepatitis. They also recommend that testing should be offered to key at-risk groups and in communities with high prevalence, and repeat testing should be offered to

304

‘HIV in the United Kingdom: 2010 Report’, HPA 2010 'Time to test for HIV: Expanded healthcare and community HIV testing in England, Interim report', HPA 2010

305

44

Memorandum by NAT (the National AIDS Trust) (HAUK 47) those most at risk. Importantly, they recommend that in high prevalence areas (diagnosed prevalence of 2 or more per 1,000) routine opt-out HIV testing should be provided to all new GP registrants and in general medical admissions in hospitals. 37.

Whilst the Department of Health has been supportive of the UK Guidelines, and helpfully funded some testing pilots of this new approach, the Guidelines are not formally ‘endorsed’ by the Government. It is important, given the success of the testing pilots, that the Government formally endorse the UK National Guidelines for HIV Testing ('the UK Guidelines') as the testing policy to be implemented across the NHS. One reason for this is that responsibility for HIV testing will quite possibly be fragmented across different commissioning bodies – the NHS Commissioning Board, local authorities and GP consortia. Clarity in our HIV testing strategy is vital.

Increasing testing ‘demand’ 38.

Currently over a quarter of MSM have never tested for HIV, 306 and approximately 40% of black Africans have never tested for HIV. 307 Both these statistics are improvements on past years. But that still leaves a significant minority who have never tested in both at-risk groups. Furthermore, ‘ever tested’ is only a minimal measure of testing effectiveness. For those who are sexually active within high prevalence populations it is not enough to test just once. Regular testing is necessary.

39.

Sexual behaviour is difficult to change but testing behaviour seems more susceptible to health promotion messages. There has been progress in recent years and this momentum must be maintained. One recent development is of a consensus in the HIV sector around messages to MSM on how regularly to test. A similar consensus has still to be developed for testing advice to African communities.

40.

Interventions should be funded to communicate to MSM the importance of testing for HIV at least once a year, and more frequently according to risk. The HIV sector should also agree as soon as possible recommendations on frequency of HIV testing for African communities in the UK.

41.

One of the difficulties in encouraging demand for an HIV test is the fact that for many years HIV can be asymptomatic – there is no apparent ‘illness’ which might motivate someone to seek medical advice. However, for between 70% and 90% of people infected with HIV there is a short period soon after infection where symptoms of ‘primary HIV infection’ are evident – usually a combination of fever, rash and sore throat. This is an important opportunity to seek and/or be offered an HIV test.308 More work must be done to increase knowledge of symptoms of primary HIV infection in most affected groups and encourage HIV testing where such symptoms occur. It is also important to increase knowledge of

306

'Tactical dangers: findings from the UK Gay Men’s Sex Survey 2008', Sigma Research 2010

'Bass Line 2008-09: Assessing the sexual HIV prevention needs of African people in England', Sigma Research 2009 307

308

See 'Primary HIV Infection', NAT 2008

45

Memorandum by NAT (the National AIDS Trust) (HAUK 47) primary infection amongst healthcare workers, especially those in primary and emergency care, where currently symptoms are commonly missed. 42.

There are additional barriers to those at risk accessing HIV tests. BASS Line found that a high proportion of African men and women simply do not know where to get an HIV test. More work also needs to be done in at-risk communities around assumptions of monogamy, and more generally on the prevalence of HIV in their communities and of undiagnosed HIV in particular. There has also been a reluctance to emphasise the effectiveness of timely treatment because of a worry that somehow this will undermine prevention messages. This is not true – accurate knowledge of HIV and the effectiveness of treatment will encourage testing, reduce transmission of undiagnosed HIV, contribute to the reduction of stigma, and enable people to consider HIV risk reasonably and responsibly.

43.

For people in African and other migrant communities there is a particular worry as to whether if diagnosed HIV positive one will be able to access HIV treatment. In fact though certain migrants are liable to charges for HIV treatment, the treatment itself should in any circumstance be accessible as ‘immediately necessary’ – but the prospect of unpayable bills and debt collectors is enough to deter many, including those who in fact can access free treatment but who are confused over the rules. The intrusion of immigration issues into public health has a wider and harmful impact. The BASS Line Survey in 2007 found that 42% of African respondents did not know that you could not be deported because of your HIV status. One implication of course is for further work communicating the facts around NHS access and immigration policy. But another must be for the Government to detach HIV services from immigration policy. That means providing free HIV treatment for those living here who need it, just as is done for all other STIs and infectious diseases. It also means dropping plans in the UKBA/DH consultations last year for the NHS to inform the UKBA of NHS debtors so that future requests for entry, visa extension or citizenship might be refused.

Increasing testing ‘supply’: 44.

The HPA have recently evaluated a series of DH-funded HIV testing pilots which were designed to expand HIV testing and increase take-up. 309 These pilots, most of which were either hospital or primary care based, rolled out HIV testing as routine and opt-out. There were high levels of uptake of tests in both primary care and hospital settings, which indicates that such an approach to testing is acceptable to people. They proved cost-effective in terms of numbers diagnosed HIV positive (where this is estimated as a diagnosis rate of at least one per 1,000). The pilots also included community HIV testing projects focused on high-risk communities. These pilots saw a lower level of uptake, but again positive diagnoses. A further demonstration of cost-effectiveness is that many of the pilots are now continuing with local PCT funding.

45.

HIV testing should be routinely offered in high prevalence areas in general and acute medical admissions and to newly registering GP patients. These have been demonstrated to be cost-effective and acceptable to

'Time to test for HIV: Expanded healthcare and community HIV testing in England, Interim report', HPA 2010

309

46

Memorandum by NAT (the National AIDS Trust) (HAUK 47) healthcare staff and patients alike. NICE Guidance should reflect the UK Guidelines on this point. The NHS Commissioning Board and GP consortia should commission accordingly. HIV testing in non-HIV secondary care specialties: 46.

An important element in the UK National HIV Testing Guidelines is the need for consistent opt-out HIV testing in relevant secondary care specialties where other conditions indicate the possibility of HIV infection – for example, TB, hepatitis and lymphoma. HIV tests are still performed too rarely in many of such settings, resulting in HIV being missed and the person being diagnosed far too late. This is in NAT’s view tantamount to clinical negligence and a sometimes deadly example of how HIV stigma can undermine effective healthcare. Most of these secondary care specialties will soon, according to Government plans, be commissioned by GP consortia according to NICE guidelines, which will be developed in the near future. It is essential that NICE Guidelines for relevant secondary care specialties include routine HIV testing as recommended by the UK National HIV Testing Guidelines and that GP consortia consistently commission to these standards.

Community testing: 47.

There is also a fundamental need to extend HIV testing beyond clinical settings and make testing more accessible to reach the significant amount of unmet need. Testing strategies must offer people real choices which meet their different and changing needs, and community testing may well extend accessible testing to those who might not otherwise seek an HIV test. Community testing is often provided by the voluntary sector but could as well be provided by NHS services. More consideration is needed of how to integrate community testing into the local ‘health economy’. In particular, it is important to identify how community testing can not only provide convenience but also reach people for testing who would otherwise not seek an HIV test.

Home testing: 48.

Home sampling for HIV could be an innovative method to increase up-take of testing, as it removes the necessity to go to a clinic or GP and therefore may be less daunting to many people. Home sampling involves the individual taking their own blood sample, sending it to the laboratory/service for testing, and then receiving the result and relevant counselling from the service. Studies have shown that it is acceptable to people at risk and to those who would not normally access testing.310 Home sampling is legal in the UK and is offered by some private companies. One of the DH testing pilots was also of home sampling amongst MSM. Further exploration of home sampling within the NHS is needed – in particular, hard-pressed GU clinics could consider home sampling as a means of triaging those wishing to have an HIV test.

49.

More radical, but possibly more popular, would be the legalisation of home testing kits for HIV, where the result is available there and then to the individual. Self-testing

310

'Home testing for HIV', NAT 2008

47

Memorandum by NAT (the National AIDS Trust) (HAUK 47) could expand the reach of HIV testing and increase test take-up. US studies have indicated that self-testing for HIV is acceptable among those who have never tested before and among people at risk.311 However before self-testing could be considered the HIV Testing Kits and Services Regulations 1992 (Statutory Instrument 1992 No. 460) would have to be amended so as to permit and regulate self-testing kits. This would allow the Government to ensure proper quality control and management of self-testing. 50.

Home testing for HIV should be legalised and regulated, and integrated into strategies to increase HIV testing take-up.

Mandatory testing: 51.

In the early days of panic around AIDS there were some calls for mandatory HIV testing as a response to the epidemic. Happily in the UK no such policy was pursued. Mandatory testing breaches the human rights of the person tested 312 and the ethical obligations of the healthcare worker. It singles out HIV as in some way especially to be feared, thus perpetuating and entrenching stigma (no other condition in the UK is tested for on a mandatory basis). It thus is counter-productive, driving the epidemic underground. It is also unnecessary – all the recent HIV testing pilots have demonstrated the high acceptability of HIV testing to people when offered. There is much more we can readily do to increase testing uptake simply by offering the test more widely and consistently, and explaining the value of knowing one’s HIV status given the effectiveness of early diagnosis and treatment.

52.

It should also be noted that HIV testing as a condition for certain goods, services, employment or privileges can be effectively mandatory and should only be applied in rare and absolutely essential circumstances. The recent ILO Recommendation on HIV/AIDS and the world of work, for example, prohibits the use of HIV testing for those seeking employment, those in work or those migrating for work.

53.

Mandatory HIV testing should not be introduced in any form.

F.

Treatment

Commissioning HIV treatment and care: 54.

311 312

Current NHS reforms have put a spotlight on how HIV treatment is currently commissioned and delivered and our vision for the future. NAT considers that there are a number of possible commissioning models which could work (and indeed there are different models in different parts of the UK). It is as important to ensure any particular approach is given time to bed down and for the necessary commissioning expertise to develop in the responsible organisations. NAT has been providing administrative support to the HIV and Sexual Health Commissioners Group for England in the conviction that such a peer network can be invaluable in developing best practice and sharing experience. In the few years during which we have been supporting the Group there has been evidence of such progress. The proposed

'Home testing for HIV', NAT 2008 See Guideline 3 'International Guidelines on HIV/AIDS and Human Rights', OHCHR/UNAIDS 2006

48

Memorandum by NAT (the National AIDS Trust) (HAUK 47) reforms are inevitably going to result in loss of skilled staff and of institutional knowledge. 55.

In the NHS White Paper proposals, most NHS commissioning was to be undertaken by GP consortia, though there was an alternative for certain conditions and services of central commissioning by the NHS Commissioning Board. NAT, along with a number of HIV sector organisations, argued that HIV outpatient care should be commissioned by the NHS Commissioning Board rather than GP consortia. There were a number of reasons for this preference, including the complexity of crosscharging for patients between GP consortia, the advantage of national commissioning for drug procurement, the distorting impact of an even small increase in HIV positive patients for GP practices, the lack of experience of HIV and HIV services amongst many GPs, and the fact that open access HIV clinics have meant that the advantages cited for GP consortia do not as obviously apply in relation to this condition. 313

56.

There are a number of high cost/low volume conditions which are in a 'national definition set' for specialised commissioning and these conditions were in any event all to be commissioned by the NHS Commissioning Board, including HIV paediatric care and HIV inpatient care. HIV outpatient care had been removed from the specialised commissioning national definition set only a year previously, and on a consensual basis much of the regionally based arrangements to commission such services remained in place. The Government in its response to the NHS White Paper consultation agreed that the NHS Commissioning Board would commission HIV outpatient care, citing as one reason the advantages for drugs procurement. NAT are of course pleased with this outcome. But challenges remain.

57.

The NHS Commissioning Board will inevitably be removed from experience at local and clinic level. If possible, some regional/'supra-local' based structuring of its commissioning of HIV treatment would ensure flexibility and responsiveness to the situation on the ground.

58.

Healthcare planning will take place at the local level in the proposed Health and Well-being Boards. It is not clear how those whose healthcare is commissioned by the NHS Commissioning Board will have their interests and needs represented at these Boards around the country.

59.

There has been real progress of late in integrating sexual health services. Government proposals separate out the commissioning of HIV treatment and care (NHS Commissioning Board) from local sexual health services (local authority commissioning). The danger is a return to fragmented and uncoordinated (and thus more expensive) services - explicit and proactive steps will need to be taken to counteract such a consequence.

60.

The NHS Commissioning Board's role in HIV commissioning should not be seen as a defence of the status quo in how HIV treatment is configured and provided. It may be the opportunity to implement real change. For example, the NHS Commissioning Board could require greater involvement of GPs in the care of stable HIV patients.

313

See http://www.nat.org.uk/News-and-Media/Consultation-Responses.aspx and NAT response to the NHS White Paper consultation: Commissioning for Patients October 2010

49

Memorandum by NAT (the National AIDS Trust) (HAUK 47)

61.

Performance of the NHS Commissioning Board in these responsibilities will need to be measured and assessed by the Secretary of State. Outcome measures should be agreed which demonstrate high quality HIV treatment and care, perhaps developing and applying nationally those developed for London with support from the HPA.

62.

There are a number of issues which financial pressures will make more acute. In relation to drugs, one emerging concern, as some drugs in the near future come off patent, is that decisions will be made to take patients off single pill prescriptions and instead placed on different pills for the different drugs for cost reasons. It will be important to set such proposed savings against the impact on quality of life and adherence for people with HIV themselves, as well as the potential public health impact of reduced adherence.

63.

In relation to the configuration of services, further work needs to be done to assess how we can develop services for most people with HIV which are not exclusively provided in acute care but where there is some sharing of provision with more cost effective primary and community care settings and providers. There are opportunities for GPs to have more of a role in monitoring of stable patients, for home delivery of drugs and greater virtual communication. This will all have to be under appropriate specialist clinical oversight and with stringent quality standards and protocols.

Social care: 64.

Social care can cover a wide range of interventions, funded by local authorities, and designed to help people in their daily lives so as to play a full part in society. Until last year social care for people with HIV was separately funded through a ring-fenced grant to local authorities in England known as the AIDS Support Grant (ASG). NAT conducted a survey of the use of the ASG in 2009 and found that HIV social care was mainly spent on such services as counselling, peer support, staff training, support for adult and for young carers, personal care, children and young people, and some respite and residential care. 314 Such services can clearly be vital in enabling people to come to terms with a diagnosis, and secure support around adherence and care needs.

65.

The AIDS Support Grant and its ring-fence ended in 2010. It was, however, good to see the Government in the Comprehensive Spending Review both increase the amount provided in the Formula Grant to local authorities for social care, but also retain, albeit no longer ring-fenced, a distinct allocation for HIV social care based on local HIV prevalence (the only condition-specific allocation to continue). We are under no illusions as to the pressure for cuts being experienced in local authorities. Across the country people with HIV and organisations supporting them are making the case for HIV social care being an essential preventive intervention, supporting for example adherence to medication, self-management, social inclusion, and thus avoiding physical and/or mental deterioration which is so distressing to the individual and of course increases costs.

314

'The AIDS Support Grant: Making a difference?', NAT 2009

50

Memorandum by NAT (the National AIDS Trust) (HAUK 47) 66.

The Government has earmarked £1 billion for integrated NHS/social care provision but details are as yet unclear. One focus will certainly be 're-ablement' of those leaving hospital. NAT hopes that funds for NHS/social care coordinated interventions will look also at those with serious long-term conditions who are living in the community.

67.

In responding to the recent Government consultation on a social care outcomes framework, 315 we made clear our concern that proposed outcome measures will fail to capture the experiences of people with HIV. There is a danger in the current 'drive to the local' that outcomes of care, whether healthcare or social care, for often marginalised minorities get lost in the bigger picture. It remains very unclear what 'must do' there is at the local level to ensure that there is the political will to meet the needs of groups such as people with HIV, or gay men or African migrants.

68.

A key support will be early development of NICE guidance for HIV healthcare and social care against which we can assess performance and quality. Such guidance should identify how HIV outpatient care and social care are provided and joined up, but also how these are integrated with other essential provisions such as appropriate psychological support, which is currently so patchy across the country. 316

Wider determinants of successful treatment and care: 69.

Challenges to successful treatment and care rarely relate to HIV clinics themselves, which provide services to a high standard. However good one's direct HIV-related treatment, an individual's health and well-being can nevertheless be profoundly undermined by poverty, the immigration system, failures and delays in benefits assessment and the provision of benefit, and by poor, and untreated, mental health. In all these areas NAT has undertaken detailed work. 317 The stresses of such social and health factors undermine adherence and more broadly affect how well people respond to treatment and care. With a high proportion of people with HIV within the immigration system, significant levels of severe poverty (between 2006 and 2009 one in six of all people with HIV had to access the charitable support of the Hardship Fund for emergency assistance), and disproportionately poor mental health, the planned national strategy must involve key relevant government departments. In particular for HIV treatment and care to be effective we need: • •

An immigration system which consciously and proactively supports access to treatment and adherence (including during dispersal, detention and removal) A benefits system which assesses people with HIV fairly and accurately, which supports those who can work back into employment, and which makes decisions on, and provides, benefits promptly and efficiently

315

Go to http://www.nat.org.uk/News-and-Media/Consultation-Responses.aspx and the response to 'Transparency in outcomes - a framework for adult social care' ,February 2011 316 See 'Psychological support for people living with HIV', NAT July 2010 317 See 'Poverty and HIV 2006-2009', NAT/THT 2010; 'Unseen disability, unmet needs', NAT 2010; 'Psychological support for people living with HIV', NAT 2010

51

Memorandum by NAT (the National AIDS Trust) (HAUK 47) •

A healthcare system which acknowledges the elevated mental health needs of people with HIV, funds appropriate services and introduces joined-up commissioning and referral.

G.

Cost

70.

The HIV interventions outlined above are all immensely cost-effective compared with the alternative of neglecting them. Work by the HPA has estimated that preventing a single HIV transmission in the UK would save between £280,000 and £340,000 in direct lifetime healthcare costs alone. On that basis, were we to have prevented all the UK-acquired infections diagnosed in 2008 we would have saved the taxpayer over time £1.1 billion.318 Of course we need to do more to demonstrate, as discussed above, the extent to which our prevention work currently does prevent new infections. It is also important to show that we are acting cost-effectively in our prevention work.

71.

Similarly, early testing and diagnosis, timely commencement of treatment and good adherence all avoid the high cost of severe HIV-related illness and death, and the costs arising from further transmission of HIV by people who are unaware of their status or who are infectious because not adhering to treatment. Again, whilst the cost-effectiveness of timely testing and treatment is not disputed, we must, as discussed above, look critically at structures developed when HIV was a less common and an untreatable condition, and consider whether there are not more economical ways of providing the same quality of care.

H.

Stigma and discrimination

72.

HIV remains a stigmatised condition and those with HIV often experience discrimination. Stigma has significant impacts on, for example, disclosure (and thus on safer sex), on social inclusion, on mental health and prospects of employment. Reducing stigma both promotes the health, well-being and rights of people living with HIV, but also has an immense public health benefit, encouraging HIV testing and willingness to discuss HIV status and safer sex.

73.

Discrimination against people with HIV is unlawful - everyone diagnosed with HIV is considered in law to have a disability. This protection extends to employment, the provision of goods and services, education, trade union membership and housing. NAT were delighted to see the Equality Act 2010 consolidate and extend discrimination legislation - there are now further protections against 'dual discrimination' (where someone is discriminated against because of a combination of two characteristics - quite possible for someone with HIV); against harassment of disabled people in the provision of goods and services; and, importantly, it is now unlawful in most circumstances to ask about a job applicant's health and disability in advance of a provisional job offer (this last provision, which NAT were instrumental in securing, removes a significant barrier to people with HIV entering employment).

74.

For all these legal protections, discrimination still occurs. One very robust study was that in East London HIV clinics undertaken by Professor Jonathan Elford, City University, and colleagues. 30% of the sample of HIV positive patients reported

318

'HIV in the United Kingdom: 2009 Report', HPA 2009

52

Memorandum by NAT (the National AIDS Trust) (HAUK 47) having experienced discrimination. Of this number a half had experienced discrimination from healthcare workers (most commonly from dentists and GPs); 42% from family or friends; 27% from a sexual partner; and 22% from work colleagues. 319 NAT conducted research amongst gay men in employment. 20% of HIV positive gay men had experienced discrimination in employment relating to their HIV status, with an additional 8% uncertain as to whether poor treatment was HIV discrimination or not. 320 The most common forms of discrimination were losing one's job, being treated differently or excluded, and breaches of confidentiality. The recently published Stigma Index and surveys undertaken by Sigma Research such as 'What do you need?' also provide important evidence of the continuing prevalence of stigma and discrimination in people's lives. 75.

NAT has since 2000 conducted surveys of public attitudes to, and understanding of, HIV - in 2000, 2005, 2007 and 2010. Many of the questions have remained constant through a number of surveys allowing us to track attitudes over time. Looking at the 2010 survey, 321 it is clear more needs to be done to tackle HIV stigma. Whilst a majority of people think more needs to be done to tackle prejudice against people living with HIV (68%) and it is right that there are laws to protect people with HIV from discrimination (69%), significant minorities think that if a family member told them they were HIV positive their relationship would be damaged as a result (19%), or if a neighbour told them (23%). Nearly a third of people (30%) said they did not have much sympathy for people with HIV who were infected through unprotected sex. The overall picture reveals an association between knowledge of how HIV is transmitted and supportive attitudes to people with HIV. It also reveals a persistent minority of people over a number of issues holding ill-informed and/or stigmatising attitudes. There has in more recent years been little change in such attitudes - a more concerted and strategic approach is clearly needed.

Access to legal redress: 76.

Legal redress is possible for those who experience discrimination in healthcare and in employment. To access such redress knowledge of rights is of course important. In NAT's survey of gay men in employment one third of HIV positive respondents were unaware of their rights to protection against HIV-related discrimination, a much higher level of ignorance than for protection in relation to sexual orientation (where only 16% were unaware). Amongst those with HIV who were aware of protection from discrimination, a third were not, however, aware of their right to reasonable adjustments in the workplace.

The need for Government action to address HIV stigma and discrimination: 77.

The other health condition most commonly compared with HIV in terms of the continuing existence of stigma is that of mental health problems. It has been encouraging to see the importance the Government accords to tackling mental health stigma in the newly published mental health strategy 322 which has as one of its six objectives that 'Fewer people will experience stigma and discrimination' and that

319

'HIV-Related Discrimination Reported by People Living with HIV in London, UK', AIDS and Behavior 2008;12:255-64 Elford, Ibrahaim, Bukutu and Anderson 320 'Working with HIV', NAT August 2009 321 'HIV: Public Knowledge and Attitudes, 2010', NAT January 2011 322 'No health without mental health', DH 2011

53

Memorandum by NAT (the National AIDS Trust) (HAUK 47) 'Public understanding of mental health will improve and, as a result, negative attitudes and behaviours to people with mental health problems will decrease'. 78.

Stigma and discrimination were addressed to a limited degree in the 2000-2010 national strategy for sexual health and HIV, and there was also a separately published 'Implementation Plan' from the Department of Health detailing some of the antistigma work undertaken by the voluntary sector it was funding and supporting, but both these plans have come to an end. Taking its work on mental health stigma as its example, the Government should as part of a national strategy for HIV develop a clear multi-sectoral approach to tackling HIV stigma and discrimination. This should include: • • • •

commitment to anti-stigma training across all of the NHS, with a particular emphasis on primary care the inclusion of education on HIV and the unacceptability of stigma and discrimination in all schools' curricula support for people with HIV in knowledge of their rights and of protections against discrimination, in personally dealing with stigma as well as in disclosure of HIV status innovative work to improve public awareness, including • better use of World AIDS Day to promote awareness and understanding, • identifying high profile ‘champions’ • supporting and empowering people with HIV to share their stories and experiences, • engagement with the media, and • regular surveys of public attitudes and understanding.

Continuing discrimination in law and policy: 79.

There are some areas of law and policy where HIV discrimination is preserved and sanctioned. Such provisions reinforce stigma and discrimination in society and need to be addressed as a priority.

HIV treatment charges 80.

One is the continued charging of certain categories of migrant for HIV treatment and care. HIV is the only serious communicable disease or STI so charged, although the public health argument for treating a serious infectious disease applies as, if not more, forcibly to HIV as to other infections. This is in our view prima facie an instance of discrimination at the policy level. Arguments around possible 'pull factors' to migration from HIV treatment provision for irregular migrants have been shown to be unsubstantiated in NAT's report 'The Myth of HIV Health Tourism' (October 2008). What charges do is dissuade people from certain communities from testing for HIV - the policy reinforces high levels of undiagnosed HIV and late diagnosis in African communities in England. It thus increases treatment costs for those diagnosed late (who may need emergency admission and intensive care) and furthers the spread of HIV. The policy is a classic example of discrimination, in which infectious disease is seen as the fault of outsiders who in some way need to be 54

Memorandum by NAT (the National AIDS Trust) (HAUK 47) controlled or repelled. Such a position invariably means failing to tackle infectious disease effectively. 81.

NAT recommends that the Committee support the exemption of people with HIV from NHS treatment charges irrespective of residency status.

Occupational exclusions for HIV positive healthcare workers 82.

In employment there remain occupational restrictions for people with HIV working in certain healthcare professions. In particular those engaged in invasive procedures such as surgeons, dentists and certain midwives are prohibited from working if HIV positive. This is a particular problem for dentists who cannot readily re-train for other healthcare roles. In other countries, for example France, developments in understanding of HIV and infectiousness have resulted in changes to such rules, allowing HIV positive healthcare workers to work in areas previously prohibited. We believe that given what we now know of the impact of treatment on infectiousness it would be hard to defend these exclusions were a discrimination case to be brought. We also consider that such exclusions reinforce stigmatising and discriminatory attitudes within the healthcare system, and so contribute to the negative experiences of people with HIV cited above. There is currently a working group looking at these occupational exclusions in healthcare.

83.

NAT recommends that as part of a wider and concerted effort to remove HIV stigma and discrimination from the NHS, that the current 'blanket' occupational exclusions are ended on HIV positive healthcare workers engaging in any invasive procedure.

Discrimination in the armed services 84.

A further area where employment discrimination law does not apply is the armed services where we understand there still to be restrictions on the employment of people with HIV. The International Labour Organisation (ILO) last year agreed its Recommendation on 'HIV and AIDS and the World of Work',323 a part of the body of international law, which applies to 'armed forces and uniformed services' and which prohibits HIV status being a ground for discrimination in 'recruitment or continued employment' of any individual. The policy of the armed services needs to be reviewed in the light of what we now know of the manageability of HIV and a recommendation from the Committee to this effect would be very useful.

85.

NAT believes that current occupational restrictions around the employment of people with HIV in the armed services are discriminatory and should end.

February 2011

323

ILO Recommendation concerning HIV and AIDS and the World of Work, 2010 (No.200)

55

Memorandum by the National HIV Nurses Association (NHIVNA) (HAUK 52)

Memorandum by the National HIV Nurses Association (NHIVNA) (HAUK 52) 1.1 NHIVNA is very pleased to be given the opportunity to submit evidence to the Select Committee on HIV and AIDS in the United Kingdom. 1.2 This response is a collation of views from NHIVNA members, all of whom were approached for their thoughts, suggestions and comments. I acknowledge their valued input. 1.3 This response comes on behalf of members of the National HIV Nurses Association (NHIVNA). NHIVNA is a charitable organisation that aims to provide support, education and research to nurses providing care, either directly or indirectly, for people living with HIV. We cover the whole of the United Kingdom and represent nurses both in the acute setting, and in community or third-sector organisations. NHIVNA has written and published competencies for nurses working in the UK to endeavour to provide continuity and equity across service in the knowledge and skills of those working in HIV. 2.0

Monitoring: a) How robust is the current system for monitoring the number of people with HIV in the United Kingdom?

2.1 At present, monitoring of the number of people living with HIV in the UK is carried out by the Health Protection Agency (HPA). This has worked extremely well over the last 20 years. The HPA uses a number of methods and reporting lines to gather data on the HIV epidemic. This allows the HPA to provide detailed reporting on a yearly basis of various factors including estimates on the number of people who remain undiagnosed, information by various demographic categories and by Primary Care Trust (PCT), Strategic Health Authority (SHA) or NHS Trust. 2.2 This comprehensive monitoring and data analysis therefore provides commissioners and providers with valuable information to allow the planning and delivery of HIV care and targeted health promotion campaigns. b) Will the proposed public health reforms impact on this system? 2.3 NHIVNA does have concerns that the proposed health reforms will have a detrimental effect on this system. Any outsourcing of data collection, monitoring or warehousing could lead to the loss of influence from clinicians in designing and monitoring surveillance data. This does raise concern as it may lead to a loss of quality in that data. 2.4 NHIVNA feels that the Government must ensure the current levels of responsibility, accountability and quality in data reporting are not compromised or diminished by any changes in surveillance methods. c) Could anything be done to improve monitoring? 2.5 The British HIV Association (BHIVA) recommends that HIV care is provided across Managed Clinical Networks. Unfortunately, whilst common information is collected across the NHS relating to HIV patients, not all IT systems are compatible or able to share 56

Memorandum by the National HIV Nurses Association (NHIVNA) (HAUK 52) information across these networks. Better monitoring would require better IT systems to allow quick and efficient information-sharing. d) What groups in particular are at risk from HIV? 2.6 Data suggests that the two main affected groups are men who have sex with men (MSM) and black African communities. However this does not reflect the wider at-risk communities. 2.7 NHIVNA members report concerns regarding Young People and the myth that HIV remains an older generational problem. NHIVNA feels there needs to be recognition that Young People are as much risk of HIV as they are of Chlamydia. This highlights the issue that, whilst some communities remain less affected than others in the UK, they are not necessarily at less risk. For this reason, NHIVNA supports the implementation of the BHIVA UK National Guidelines for HIV Testing 2008. 1.0

Prevention: a) Is Government policy sufficiently focused on HIV prevention?

3.1 Whilst the White Paper does explicitly mention Sexual Health and HIV, NHIVNA believes it should state HIV prevention as an unequivocal priority. 3.2 NHIVNA feels that the link between appropriate treatment and its effect on the onward transmission of HIV must be stated and linked specifically to prevention strategies. b) Have the right groups been targeted in recent prevention campaigns? 3.3 Recent prevention campaigns have had some success in HIV prevention. NHIVNA would argue, however, that they do not sufficiently or equally engage with at- risk groups across all parts of the UK. Recent campaigns can be seen as being very generic and not specifically targeting at-risk groups. 3.4 Some NHIVNA members working in the voluntary sector report that from their experience many drug dependency units (DDU) do not offer routine HIV testing, and recent reports suggest that 9% of people living with HIV are also HCV positive (hepatitis C virus). This highlights the need for close co-operation between HIV and BBV (blood-borne virus) services to help identify co-infected people. c) To what extent have prevention initiatives targeted at injecting drug users been successful? 3.5 These have been largely successful. Through needle and syringe exchange programs, sharing of works (drug-injection equipment) has declined. There remains a significant cohort of intravenous drug-users (IVDU) that continue to share, mainly amongst those communities who have more difficulty in accessing services.

57

Memorandum by the National HIV Nurses Association (NHIVNA) (HAUK 52) d) How could prevention initiatives be better delivered and evaluated? 3.6 Financial incentives could be used to ensure the development of coherent prevention strategies. These would mirror the work currently being performed in Primary Care to improve uptake of HIV testing. 3.7 NHIVNA additionally believes that a broader approach to prevention should be adopted. Examples of this would include exploring drug usage and mental health issues within MSM communities, as there is a well-recognised link between self-efficacy and ability to implement and maintain transmission-minimising behaviours. 4.0

Testing: a) Are current testing policies adequate across the country?

4.1 The rate of undiagnosed HIV infection remains unchanged, which suggests that current testing policies are not adequate. 4.2 Testing must take place in a variety of settings, as highlighted by the UK National Guidelines for HIV Testing 2008. NHIVNA supports BHIVA guidance on improving HIV testing. However, we believe the right balance must be found, between a short 5-minute pretest discussion and more detailed discussions, so as to ensure that testing reflects the needs of the individual patient. This would enable those who need detailed psychosexual support prior to testing to be safely tested, with minimal psychological effects in the event of a positive diagnosis. 4.3 Local testing policies must also identify clear referral pathways from Primary to Secondary care to enable those diagnosed outside of “specialist centres” to access treatment and care seamlessly and efficiently. b) What can be done to increase take-up rates? 4.4 HIV testing must be seen as a “screening” test, to normalise its offer and uptake. It should follow an opt-out process, in order to maximise uptake, as seen in the Antenatal HIV Testing models. 5.0

Treatment: a) How can the NHS best commission and deliver HIV treatment?

5.1 The delivery of HIV treatment and services is currently the subject of debate, and there is little empirical evidence to guide the optimal organisation, setting and delivery of HIV healthcare in the UK, in the post-HAART era (highly active antiretroviral treatment) (Handford et al., 2006). 5.2 While the BHIVA Standards for HIV Clinical Care (2007) provide guidelines for a robust clinical network structure for HIV service delivery, sector-wide commissioning of HIV is required to successfully implement HIV clinical networks at a national level. There are excellent examples of commissioned HIV clinical networks in isolated services, but large areas of the UK exist as informal networks that lack management or regional leadership structures. As the concept of clinical networks has been tried and tested in other specialist 58

Memorandum by the National HIV Nurses Association (NHIVNA) (HAUK 52) areas such as cancer, diabetes and cardiology, it would seem plausible for HIV services to be commissioned on a sector-wide basis to maximise any economies of scale and equity of service provision across rural and urban HIV services. 5.3 The increase in demand for specialist consultations with, for example, endocrinology, hepatology, renal medicine, cancer services, cardiology and rheumatology (Engsig et al., 2010) will require creative HIV joint commissioning strategies. Likewise, the long-term healthcare needs of the ageing HIV population in the UK will need to be factored into the commissioning of HIV services (Independent Advisory Group on Sexual Health and HIV 2009; Fisher, 2010). 5.4 While there is no specific research evaluating the delivery of nurse-led clinics in HIV care in the UK, there is considerable evidence for the effectiveness of nurse-led care in Europe, USA and sub-Saharan Africa (Hekkink et al., 2005; Wilson et al., 2005; Bedelu et al., 2007; Shumbusho et al., 2009; Sanne et al., 2010). There are national competencies for HIV nurses in the UK that complement the BHIVA and MedFASH Standards (British HIV Association, 2007; Medical Foundation for AIDS and Sexual Health, 2003; National HIV Nurses Association 2007) and that set a minimum standard for nursing people with HIV at all levels of service delivery. In view of this, NHS commissioning should consider the purchasing of HIV nurse-led care and activity as part of a multidisciplinary and cost-effective package of care for people with HIV. 5.5 Commissioning should also include some third-sector healthcare provision that is based on local, regional and national needs, such as palliative and continuing care, brain impairment and adherence support. This is particularly relevant to the ageing HIV population and to those with chronic HIV infection who may require ongoing care and support for comorbidities or co-infections (Powers, 2010; Ward, 2009). In addition, there needs to be a joined-up approach to the commissioning of newer third-sector services to ensure robust outcome evaluation in line with NHS services. 5.6 A qualitative study is in progress, exploring current models and settings of HIV healthcare in the UK. This study is being undertaken as part of a PhD fellowship programme and aims to construct a future model for HIV healthcare delivery that can respond to the changing picture of HIV infection. b) What impact might the proposed new commissioning reforms have on HIV treatment? 5.7 NHIVNA feels that the removal of HIV from specialist commissioning has been unfortunate timing, in view of the new White Paper and proposed GP commissioning. As we continue to learn more about chronic HIV infection and the emerging conditions associated with HIV (Deeks and Phillips, 2009; Effros et al., 2008; Guaraldi et al., 2009), some stability is required from a commissioning perspective. There remain unanswered questions about how HIV services should be delivered, and NHIVNA believes it would make sense for HIV commissioning to be included in a central, specialist commissioning body – during the transition period, at least. 5.8 The present Coalition public health spending cuts are already evident in some essential community support services. This could have considerable impact on community care services for people with HIV that provide ongoing adherence support, chronic disease management and complex case management and could result in increased hospital 59

Memorandum by the National HIV Nurses Association (NHIVNA) (HAUK 52) admissions and unsafe hospital discharges. As the HIV population in the UK ages, consideration will need to be given to medium- and long-term planning of healthcare and support services for a large number of people with chronic disease, co-morbidities and coinfection, many of whom live alone (Fisher, 2010; Powers, 2010; Ward, 2009). c) In what setting can treatment most effectively be delivered? 5.9 There is little evidence to guide those delivering HIV treatment as to which setting is best suited to delivering HIV treatment within the UK. The standard of care in secondary care specialist clinics is currently high, with 90% of patients on antiretroviral therapy having an undetectable HIV viral load (Health Protection Agency, 2010). In addition, 81% of HIV patients live within 5km of their local HIV clinics (Huntington et al., 2010). Any changes therefore must preserve the high auditable standards in the delivery of care. Shared care between HIV specialist centres and primary care, based upon the new commissioning arrangements, would appear the logical development in care delivery; however, there are mixed reports in the HIV literature about the role of GPs in HIV healthcare (Benn et al., 2009; Kennedy et al., 2008), with some advocating GPs based in HIV clinics (Munir et al., 2009) and others recommending more involvement of GPs in non-HIV related care (Namiba et al., 2010). BHIVA has released a position statement on shared care with GPs, and NHIVNA would suggest that it would seem plausible at present to continue with multidisciplinary secondary care delivery until further evidence and experience of shared care models is available. 6.0

Cost: a) Have cost considerations been satisfactorily balanced with public health imperatives in HIV: i. ii.

6.1

prevention policy; and treatment policy?

No response. b) Is research funding correctly prioritised?

6.2

No response.

7.0

Stigma: a) What impact does stigmatisation of those with HIV have on those infected, and on addressing HIV as a public health problem?

7.1 Stigma can lead to non-access of services prior to or after diagnosis, through fear of consequence. It continues to hinder the sharing of information between secondary and primary care and disclosure to partners. Stigma therefore prevents people coming to terms with their diagnosis and also affects their ability to receive best care. This clearly inhibits the process of addressing public health issues and improving the success of prevention interventions.

60

Memorandum by the National HIV Nurses Association (NHIVNA) (HAUK 52) b) Where are the problems of stigmatisation most acute? 7.2 The problems of stigma are most acute in communities that already experience discrimination due to racial, sexuality or other characteristics. 7.3 Stigma is also present amongst healthcare professionals and historical ideas about HIV and HIV testing. c) What measures are currently taken to tackle HIV stigmatisation? What more should be done? 7.4 A reduction in stigma would require a change in people’s view of HIV and AIDS. Negative reporting in the media will not help this occur, and Government encouragement of sensible and responsible reporting would help. 7.5 Establishing HIV as a screening rather than a diagnostic test that is more widely utilised within healthcare settings would also assist in breaking down the myths of HIV and associated stigma. 18 February 2011

61

Supplementary Memorandum by Nathaniel Ault, Chair, National HIV Nurses Association (HAUK 88)

Supplementary Memorandum by Nathaniel Ault, Chair, National HIV Nurses Association (HAUK 88) 1.

We have heard evidence that “some very good things” have been achieved within HIV treatment in recent years, and that care must be taken to maintain them in a time of extensive reform. What elements of existing HIV treatment and care do you think most need to be protected? There has been a number of developments around management of Stable patients via nurse led clinics, either face to face appointments or virtual appointments (whereby blood results are reviewed by nurses and patient advised accordingly via email or text/telephone). These have allowed patients to access care at convenient times to themselves thus being able to fit care within other work/life commitments. These clinics are set within a wider supervised team, lead by a Consultant Physician in HIV and so have access to advice/support as necessary and Yearly reviews are undertaken by a Clinician (Consultant Physician or Consultant Nurse) to maintain/monitor patient progress. These are financially economical ways of managing a chronic disease cohort of patients. This accessibility and flexibility for patients to access care needs to be protected within the reform process.

2.

What can health professionals do to help their HIV-positive patients understand and reduce their risk of infecting others? I believe a vast amount is being done already to help patients understand and reduce risk of infecting others. Guidelines from BHIVA/BASHH already exist to ensure patients have access to Health Advisor input when diagnosed with other sexually transmitted infections and we currently offer sexual health screening on a regular basis to our patient cohorts. Guidelines state that screening should be offered at least yearly or according to a risk assessment which is carried out at each visit. In addition we educate our patients regarding Post Exposure Prophylaxis for Sexual Exposure so that they can inform others where there have been risk incidents. Condoms are offered and given out freely when requested/accepted. Access to Psychological services is possible when there have been continuing risk behaviours being undertaken, however this is under pressure in many clinics in the UK and some Psychology posts have been cut. Nurses are being educated in behaviour change techniques such as Motivational Interviewing, which enables challenges of behaviour to occur and encourage decision making around behaviour change. Literature is available in clinics regarding sexual health and sexual infections and risk reduction also.

3.

Given the continuing spread of HIV, do you believe that the right balance is being struck in the work that you do between treatment and prevention? It is very difficult to tease out the prevention and the treatment work. Much of it is interrelated as described above. An increase in targeted and general campaigns via the 3rd sector organisations would be of help as would taking up the recommendations 62

Supplementary Memorandum by Nathaniel Ault, Chair, National HIV Nurses Association (HAUK 88) from the HALVE IT Coalition regarding increased and more accessible testing. There is a lot of evidence to suggest that people continue to practice risky behaviour, but do not necessarily view it as risky as access to PEP research suggests that people access due to 'one off' risk where the risk is defined by something about the partner, or the situation but not specifically the activity. Certainly allowing prevention to be specifically identified in the White Paper will hopefully help with this, however this will be reliant on GP commissioning consortia seeing HIV as a local priority. Greater awareness around PEPSE would help as would developing guidance around Pre Exposure Prophylaxis (PrEP). 4.

Migrants who do not have the right to remain in UK have to be charged for their HIV treatment and care, yet they can be treated for free for other infectious diseases such as TB. What impact do these rules have on efforts to tackle HIV, from both an individual and public health point of view? It is felt that this process generally prevents access for migrants to care related to their HIV infection. As this therefore leads to greater health risks, either through opportunistic disease development or through increased infectiousness and therefore transmission risk to others, this policy can in the longer term mean greater expense to the NHS. Patients admitted unwell to hospital who are not entitled to care due to this process, usually cannot pay for care received and can discharge themselves early from hospital leading to readmission and greater resource expenditure in the longer term.

31 March 2011

63

Memorandum by National Study of HIV in Pregnancy and Childhood (NSHPC) (HAUK 30)

Memorandum by National Study of HIV in Pregnancy and Childhood (NSHPC) (HAUK 30) Prepared by Dr Pat Tookey (Principal Investigator NSHPC) MRC Centre of Epidemiology for Child Health, UCL Institute of Child Health, London 1. Summary The National Study of HIV in Pregnancy and Childhood (NSHPC) is the confidential active reporting system for • • •

pregnancies in HIV-infected women babies born to HIV-infected women other children with HIV infection and AIDS

The Committee has identified six key issues. The NSHPC contributes directly to four of them: • monitoring of HIV in children and in pregnant women, • prevention of mother-to-child transmission of HIV, • development and monitoring of antenatal HIV testing, • and the evaluation of treatment for pregnant women, HIV-infected children, and uninfected children exposed to antiretroviral drugs in fetal life The NSHPC cost was £179,136 (Health Protection Agency (HPA) funding) for the year 2010/11. Our current contract runs out on 31 March 2011. We are seeking an extension of this contract (at a reduced level) through the HPA, but this has not yet been approved. We don’t directly tackle stigma, but we provide comprehensive, reliable and valuable data about HIV in pregnant women and children to those who do, including people living with HIV, the voluntary sector, the research community, commissioners and health professionals. Over 14,000 pregnancies (including more than 5,000 occurring between 2007 and 2010) and 2,340 infected children have been reported to the NSHPC to date. We make a substantial contribution to the national HIV surveillance programme, and also provide an invaluable platform for audit, research and collaboration at regional, national and international levels. 2. Brief outline of NSHPC methods 324 The study was established in 1986 at the Institute of Child Health (ICH) to study AIDS in children, and extended in 1989 to cover pregnant women with HIV, and their infants. This is non-selective, anonymised, comprehensive, observational, active surveillance, and we have virtually complete coverage of HIV diagnoses in pregnant women and children since the beginning of the epidemic in the UK. HIV-positive pregnant women accessing antenatal care, their infants, and HIV-infected children living in the UK are reported to the NSHPC through two parallel reporting schemes run with the support and collaboration of the Royal College of Obstetricians and Gynaecologists, the Royal College of Paediatrics and Child Health, and the Children’s HIV Association (CHIVA). We collect standardised information about the diagnosis and management of these pregnant women, the outcome of their pregnancies, and the management and infection status of their children. 325 We are able to respond to newly Current NSHCP data, methods and associated material available at www.nshpc.ucl.ac.uk Townsend et al. Trends in management and outcome of pregnancies in HIV infected women in the United Kingdom and Ireland, 1990-2006. BJOG 2008; 115:1078-86

324 325

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Memorandum by National Study of HIV in Pregnancy and Childhood (NSHPC) (HAUK 30) emerging contemporary clinical and research questions as they arise, by revising our processes and data collection forms as necessary. 3. How our data are used We are able to make extensive use of our data for multiple surveillance, research and audit purposes (‘collect once, use many times’). 3.1 Through the NSHPC surveillance programme we • provide national paediatric and obstetric surveillance data to the HPA and Health Protection Scotland which is then combined with other national surveillance data on HIV in adults to produce a comprehensive picture of the epidemic • monitor the prevalence of diagnosed HIV infection in pregnant women and children at a local, regional and national level • track changes in the management of HIV in pregnancy and transmission of infection from mother to child326 and contribute to the development and evaluation of the national antenatal HIV screening programme 327 (see 4.1) • collect data on the second generation – infants born to perinatally infected women (see 4.2) • record information on maternal and infant exposure to antiretroviral drugs, monitor the health of uninfected children born to HIV-positive mothers and exposed to both HIV and antiretroviral drugs in fetal life (for example by monitoring congenital abnormalities, prematurity, child health, and death and cancer registrations), and contribute to pharmacovigilance studies (see 4.3) • provide baseline prenatal, infant and child data for the Collaborative HIV Paediatric Study (CHIPS) which follows up infected children, and contribute to longer term studies of survivors of paediatric HIV infection 328 (see 4.4 and 4.5) • contribute to national CHIVA and British HIV Association (BHIVA) guidelines, 329 and international guidelines on the management of HIV in pregnancy and paediatric HIV • contribute anonymised population-based data to regional, national, European and other international research and surveillance collaborations 4. Some examples of contemporary issues addressed by the NSHPC 4.1 How can we reduce the number of perinatal infections even further? About 500 children have been diagnosed with HIV in the UK in the last five years, two-thirds of whom were born abroad. Despite high uptake of antenatal HIV screening, and effective interventions to prevent mother-to-child transmission, some UK-born children still acquire infection from their mothers: about 1% (10-15) of the 1200-1300 infants born each year to diagnosed HIV-positive women are infected. 330 Another 20-30 newly diagnosed children are also reported each year whose mothers were not previously known to be HIV-positive. These women were either not tested in pregnancy, or acquired HIV after their antenatal test 326

Townsend et al. Antiretroviral therapy in pregnancy: balancing risk of preterm delivery with prevention of mother-to-child HIV transmission. Antiviral Therapy 2010; 15(5):775-783 327 Townsend et al. Uptake of antenatal HIV testing in the UK: 2000-03. J Public Health 2006;28:248-52 Judd et al. Morbidity, mortality, and response to treatment by children in the UK and Ireland with perinatally acquired HIV infection during 1996-2006: planning for teenage and adult care. CID 2007 Oct 1;45(7):918-24

328

329

De Ruiter et al. British HIV Association and Children's HIV Association guidelines for the management of HIV infection in pregnant women 2008. HIV Medicine 2008; 9:452-502 330 Townsend et al. Low rates of mother-to-child transmission of HIV following effective pregnancy interventions in the UK and Ireland, 2000-06. AIDS 2008; 22:973-981 65

Memorandum by National Study of HIV in Pregnancy and Childhood (NSHPC) (HAUK 30) later in pregnancy or after their baby was born and while they were still breastfeeding. We are now attempting to explore these remaining mother–to-child transmissions in more detail, in order to identify ways to reduce the infection rate even further. This builds on our 2007 audit of perinatal transmissions 331 which resulted in a number of recommendations now embedded in BHIVA and antenatal screening guidelines. We are also planning to extend the information we collect about infant feeding by HIV-positive mothers, in the light of the recently revised WHO and BHIVA Guidelines on infant feeding. 332 Only through routine and standardised data collection will we be able to assess the impact on mother-tochild transmission of any changes in infant feeding practices. 4.2 Second generation pregnancies, and women having repeat pregnancies We are now receiving the first reports of births to women who were themselves perinatally infected (second generation pregnancies). 333 We are also recording increasing numbers of women having two or more pregnancies after their HIV diagnosis (under investigation by PhD student). These scenarios present new challenges for treatment and care, and we can provide reliable and comprehensive information for recognising new issues and developing appropriate management guidelines. 4.3 Drugs in fetal life – exploring the long term consequences Since 2000 about 10,000 infants have been born in the UK to women who have taken antiretroviral drugs in pregnancy, and treatment is now so successful that 99% of these infants escape infection. Nevertheless there are concerns about potential long-term side effects of exposure to HIV drugs in fetal life, particularly since an increasing proportion of women are taking antiretroviral drugs for their own health at the time of conception. We have already established a system to monitor cancer diagnoses (anonymously) in this steadily increasing population of children. 334 In the long term we should be able to identify any increased risk of cancer, and establish whether it is related to specific drugs. We believe we are the only country in the world where this can be done on a comprehensive basis. Exploring other long term outcomes of fetal exposure to these drugs is an aspiration, but currently beyond our scope. 335 4.4 CHIPS – children growing up with HIV One of our key collaborators is the MRC Clinical Trials Unit, which hosts the Collaborative HIV Paediatric Study (CHIPS).336 CHIPS is a joint venture of the NSHPC, the MRC CTU, and the clinics caring for children with HIV; since 2000 this multi-centre cohort study has collected annual clinical, laboratory and treatment information, and data on hospital admissions and use of paediatric services, on virtually all HIV-infected children living in the UK. CHIPS is funded by the NHS (London Specialised Commissioning Group) on an annual 331

 AIAU, NSHPC, CHIVA. Perinatal Transmission of HIV in England 2002‐2005. London, October 2007;  Executive Summary available from www.nshpc.ucl.ac.uk   332 Taylor et al. BHIVA / CHIVA position statement on infant feeding in the UK 2011. In press HIV Medicine 2011 333

Thorne et al. Pregnancies in young women with vertically-acquired HIV infection in Europe. AIDS 2007, 21:2552-56 334 Hankin et al. Monitoring death and cancer in children born to HIV-infected women in England and Wales: use of HIV surveillance and national routine data. AIDS 2007; 21(7):86769 Hankin et al. In utero exposure to antiretroviral therapy: feasibility of long-term follow-up. AIDS Care 2009; 21(7): 809-816 336 CHIPS data and full list of publications available at www.chipscohort.ac.uk 335

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Memorandum by National Study of HIV in Pregnancy and Childhood (NSHPC) (HAUK 30) renewable basis (£87k in 2010/11). Currently there are 1,245 children in CHIPS follow-up, most of whom were infected perinatally. About 30-40 young people move from paediatric to adult care annually (~250 total to date) and thus leave CHIPS. 4.5 Transition to adult care Through the NSHPC and CHIPS we have comprehensive data collected from conception, birth or diagnosis and throughout childhood on HIV-infected children in the UK. We need to build on this valuable prior investment and track these young people into adult life in order to understand the long-term impact of perinatally acquired HIV infection. 337 Many clinical research questions are yet to be addressed which are of international relevance, with the first cohort of survivors of perinatal HIV infection only now reaching adult life. A new cohort study (Adolescents and Adults Living with Perinatal HIV (AALPHI)) has recently secured charitable funding. AALPHI will recruit 400 young people transferring from CHIPS to adult care, along with a control group, and follow them for 5 years to examine longerterm outcomes of lifelong exposure to HIV and long-term exposure to HIV treatment. There is also an urgent need to continue comprehensive anonymised surveillance linked to the NSHPC/CHIPS data, since those who consent to detailed follow up may well be different from those who prefer not to be involved. Transition to adult services in other chronic disease areas is associated with very poor health outcomes. 5. Dissemination Our data are incorporated into the HPA’s regularly updated surveillance tables and reports, and WHO and European HIV surveillance reports. We make substantial and regular reports to our clinical respondents, and regularly contribute to local, regional and national professional and community study days and conferences. We provide specific local and regional data to, for example, commissioners, clinicians, and screening co-ordinators, and we contribute to the development, monitoring and evaluation of the antenatal HIV screening programme. 338 We also publish our findings as original research papers, and contribute to regional, national and international collaborations. Our data are an invaluable resource for the regularly revised BHIVA and CHIVA guidelines on management of HIV in pregnancy and children. Up to date data and resources are on our website www.nshpc.ucl.ac.uk, including our quarterly newsletter, slide sets, and details of all publications, conference abstracts and presentations. 6. Funding and Staff The NSHPC was originally funded by AVERT (AIDS Education and Research Trust), and subsequently from the early 1990s by the Department of Health which transferred funding responsibility to the Health Protection Agency (HPA) in 2006. Our current 3-year contract with the HPA ends 31 March 2011. The current funding (£514k 2008-2011) supports three full-time staff: Study Coordinator/Data Manager, Scientist/Analyst, Clerical Assistant. We are currently seeking an extension of this contract, and are currently proposing to provide some additional data to the HPA, and cut back the sum requested for the next 3 years (20112014) to £379k to support two staff members only. We are trying to identify other sources 337

Foster et al. Young people in the UK and Ireland with perinatally acquired HIV: the paediatric legacy for adult services. AIDS Patient Care and STDs 2009; 23(3):159-166 Infectious Diseases in Pregnancy Screening Programme. Programme Standards. UK National Screening Committee. September 2010. Available at http://infectiousdiseases.screening.nhs.uk/standards

338

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Memorandum by National Study of HIV in Pregnancy and Childhood (NSHPC) (HAUK 30) of funding in order to retain the Study Scientist/Analyst, and maintain data quality, high response rates and excellent coverage. Other crucial support for the NSHPC is provided without study-specific funding. The Principal Investigator, who manages ethics and research governance, funding, collaborations, and dissemination, is currently HEFCE funded. Statistical support is provided by the Co-Investigator who is also currently HEFCE funded. IT and other technical support is provided through the MRC Centre of Epidemiology for Child Health, and the ICH. Studentships and Fellowships also provide vital support, and we seek additional support from a variety of sources for specific add-on research and audit studies. 7. Ethics and Governance The NSHPC has MREC and NIGB approval. The NSHPC steering group provides specialist support and advice, ensures the effective collection, use and dissemination of data, and assists in developing the research potential of the study. Membership of the steering group includes colleagues from the HPA and Health Protection Scotland, health professionals working in the HIV field, and lay members (current membership on website). 8. Conclusion The NSHPC provides invaluable data about HIV in pregnant women and children in the UK which is used by clinicians, commissioners, researchers, public health specialists, policy makers and people living with HIV. It has virtually complete data on HIV in pregnant women and children from the beginning of the HIV epidemic in the UK to the present day. About 80 peer reviewed papers have been published, along with numerous reports, abstracts and presentations. The NSHPC is responsive to contemporary clinical and policy research questions, and contributes to the development and audit of testing and management policies, standards and protocols. All this is done with a small number of dedicated and highly experienced staff, collaborating with many partners, at a very low cost. 17 February 2011

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Memorandum by Naz Project London (HAUK 3)

Memorandum by Naz Project London (HAUK 3) Monitoring a.

How robust is the current system for monitoring the number of people with HIV in the United Kingdom? • •

•

b.

Will the proposed public health reforms impact on this system? •

c.

The system is working. However it could be improved by putting robust surveillance systems on targeted groups. The biggest problem and gap in the current monitoring system is the weak follow up of diagnosed cases. These loose diagnosed cases are “time bombs” and are potentially the ones who will multiply new cases. No study of these new diagnosed cases of HIV has been conducted to propose solutions or means of keeping them under the radar. There is no incentive for marginalised, immigrant HIV positive cases. As a result, they may decide to hide and not to come for treatment and care. These potentially represent a significant number.

Yes, and most likely in negative ways. This is mainly because the disintegration and abolishing of PCTs will have repercussions for those who already have difficulties in accessing the existing statutory health care. Reasons for this include: • Immigration status, unemployment, stigma, religion, culture, sexuality, homophobia (mainly in the BME communities) have already made accessing existing services difficult. The reformed public health system will make surveillance more difficult because they add new layers of complexity and depend primarily on access to local GPs where, for example, confidentially can be harder to ensure. • HIV services have to be delivered and managed by health professionals. In the current reform, it is vague how local authorities with less knowledge in health care delivery will achieve the expected impact for the community at large. With the spending cuts, service delivery and contact tracing in areas of health like HIV will be undermined and in return monitoring will be not as efficient as it should be.

Could anything be done to improve monitoring? Monitoring could be improved by incorporating it with major strategies of HIV prevention and health promotion that reach marginalised communities and services at the grass root level. • •

Incorporate HIV testing as a routine part of care in traditional medical settings and extend the service post diagnosis to new cases. Implement new models for diagnosing HIV infections outside medical settings (e.g., rapid testing) by emphasizing community based organizations (POCT). Follow-up of new cases has to be part and parcel 69

Memorandum by Naz Project London (HAUK 3)

• • •

d.

of the monitoring since newly diagnosed cases need further care and support Prioritise work with people diagnosed with HIV and their partners Include counselling for people with HIV within the monitoring framework to catch as many people as possible. Although sub-populations (BME, MSM, IDU and CSW) at high risk may continue to contribute disproportionately to the spread of HIV, sexual networking in the general population is sufficient to sustain an epidemic independent of sub-populations at higher risk of infection. Hence, monitoring also has to focus on this wider population.

What groups in particular are at risk from HIV? • • • • • • •

BME MSM who have unprotected sex IDU (Intravenous Drug Users) CSW (Commercial sex workers) Individuals with multiple sexual partners Sero-discordant partners Individuals infected with co-infections, e.g., TB, Hep C

Prevention a.

Is Government policy sufficiently focused on HIV prevention? •

b.

Have the right groups been targeted in recent prevention campaigns? •

c.

Yes, the right groups are targeted but the pathway is not exhaustive. The prevention campaign should not stop at diagnosis. Like that of TB, treatment and especially follow up has to consistently occur if the epidemic is to be stopped.

To what extent have prevention initiatives targeted at injecting drug users been successful? •

d.

The policy is ok. The problem is implementation

Naz Project London is not familiar with this area: No comment.

How could prevention initiatives be better delivered and evaluated? Better delivered: •

Ensure linkages between programme level (Local authority, GP consortia, Hospitals, GUM clinics, community based prevention activities) and country level disease trends and impact;

•

Collaborate with partners to access strategic information related to other key priorities, including sustainability; provision of services to the 70

Memorandum by Naz Project London (HAUK 3) poor and vulnerable groups; health system-wide effects; and contributions to poverty reduction. Most relevant for Evaluation is: •

Process – the activities, systems, actions and other outputs that need to be completed in the near term to achieve improvements or increases in coverage or delivery of HIV services to target groups;

•

Coverage – the changes in key variables in the medium term that demonstrate that larger numbers of individuals in identified target groups are being reached by and benefit from improved services or interventions;

•

Impact – the changes over a longer period in sickness and death, reducing the burden of disease in the target population that indicate that the fundamental objectives of the interventions have been achieved.

Testing a.

Are current testing policies adequate across the country? Naz Project London is not sure. There is probably room for improvement.

b.

What can be done to increase take-up rates? • • • • • •

Health Promotion activities for testing should focus on:Importance and benefits of early HIV diagnosis Implications of the test outcome Information on referral services How and where to access services Focus has to be on targeted communities

Mechanisms: • • • • • •

Integrated activity by NHS, Local authorities, GP consortia and community based organizations Community-based activities to reach the marginalized “Hard to reach Communities” Papers at conferences and in journals Mass media such as television and radio Small media such as brochures and pamphlets Interpersonal communication and peer education

Treatment a.

How can the NHS best commission and deliver HIV treatment? The main success which the GP consortia will bring is in relation to treatment. So, HIV treatment should/must be through the consortia. However, if public 71

Memorandum by Naz Project London (HAUK 3) health and prevention is under Local authorities, it is unclear what mechanisms will link diagnosis, prevention, treatment and care. b.

What impact might the proposed new commissioning reforms have on HIV treatment? As long as treatment is governed by clinicians and not decentralised, e.g., to over the counter Boots and other pharmacies, the treatment protocol is fine. The hew reforms should not make much of a difference to treatment.

c.

In what setting can treatment most effectively be delivered? Unlike testing, treatment is preferable in a clinical setting.

Cost Naz Project London is not familiar enough with this area to comment. Stigma a.

What impact does stigmatisation of those with HIV have on those infected, and on addressing HIV as a public health problem? Certain groups, e.g., men who have sex with men, sex workers and injecting drug users, often bear the heaviest burden of HIV-related stigma. • • • • • •

• • • • • b.

Isolating people who are HIV-infected Restricting participation in local events, e.g., not including partners and children of in activities or gatherings Using violence against a partner or family member who has tested HIVpositive Limiting support for grieving family members, including orphans Non-disclosure due to fear of response from others, and as a result reduced access to support from family, friends, community Avoidance of health and social services due to fear of unfair treatment/fear that action would be admission of HIV-status, potentially leading to ; this will lead to increased risk of transmission to partners or children and limited choice in health care May deter people from getting tested May make people less likely to recognize their risk of infection May discourage those who are HIV-infected from discussing their HIV status with partners May prevent adoption of risk-reduction practices that may lead to being labelled as HIV-infected May obstruct prevention, treatment, and care programs

Where are problems of stigmatisation most acute? • •

BME communities LGBT communities 72

Memorandum by Naz Project London (HAUK 3) • • • c.

Newly arrived immigrants In religious groups In sex workers

What measures are currently taken to tackle HIV stigmatisation? What more should be done? • •

Address human rights of people living with HIV Prioritise HIV-related prevention, treatment, care support services

High-ranking politicians, other well-known individuals: • May serve as leaders and role models • Advocate for legislation • May engage the media to increase publicity • Promote implementation and enforcement of legislation Educate and engage the national media • Increase knowledge about HIV • Raise awareness of issues faced by people with HIV • Increase awareness of domestic violence faced by newly-diagnosed women and MSM • Communicate that such violence against is inappropriate, immoral, illegal • Encourage leaders to make workplaces “HIV-friendly” Community level interventions: • Build partnerships with religious, educational, social, civic organizations • Facilitate exchange of information, ideas among healthcare professionals and other caregivers of • Provide input into curricula for students in healthcare professions (for example, nurses, midwives, physicians) Health care setting: • Health Care Workers and managers take the lead in challenging long-held community beliefs and practices, including stigma and discrimination • Support HIV-infected workers to continue to work • Implement policies guaranteeing clients equal treatment • Give clients a confidential means of reporting discrimination 8 February 2011

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Letter from the North East London HIV and Sexual Health Clinical Network (NELNET) (HAUK 6)

Letter from the North East London HIV and Sexual Health Clinical Network (NELNET) (HAUK 6) 1.1 We are very pleased to be given the opportunity to submit evidence to the Select Committee on HIV and AIDS in the United Kingdom. 1.2 This response comes on behalf of the North East London HIV and Sexual Health Clinical Network (NELNET). The Network has high level clinical, commissioning, third sector and service user involvement across the NE London Health Service Economy. The membership is drawn from 5 acute NHS Trusts (Barts and the London, Homerton, Newham, Barking and Whipps Cross), clinicians from multiple disciplines involved in HIV/sexually transmitted infections (STI) care, commissioners and public health professionals from 7 PCTs (Tower Hamlets, City & Hackney, Newham, Waltham Forest, and Barking, Dagenham and Redbridge), together with Reproductive and Sexual Health (RSH) services, voluntary sector services, and service users from across the locality. 2.0

Monitoring

a. How robust is the current system for monitoring the number of people with HIV in the United Kingdom? 2.1 The HIV surveillance and monitoring system, run by the Health Protection Agency (HPA) is one of the best in the world, providing borough-level data with a lag time of only one year The HPA data informs multiple work streams and provides a robust basis for service planning. It will be an important part of the way in which HIV clinical care is funded via payment by results (PbR). Much of the current success depends on the close liaison between the HPA and clinical services. b.

Will the proposed public health reforms impact on this system?

2.2 Any reduction or compromise to the current function of the HPA once it is incorporated into Public Health England threatens this system. For example, devolution of data collection to local authorities carries a risk of delay and error in data reporting and information on rates of undiagnosed HIV would be lost if the anonymous seroprevalence survey was stopped. c.

Could anything be done to improve monitoring?

2.3 Common HIV-related data fields are collected across the UK from clinical services, but the information technology (IT) equipment, software and systems differ in type and quality between clinics, even within the same network. Investment in HIV-specific IT software that could be standardized across HIV clinical services would improve the quality of data and the efficiency of the data collection process. d.

What groups in particular are at risk from HIV?

2.4

There are two groups at risk of the effects of HIV.

2.5 The first are those who are already infected but as yet undiagnosed. The profile of this group is changing under several influences, including that of migration patterns. In northeast 74

Letter from the North East London HIV and Sexual Health Clinical Network (NELNET) (HAUK 6) London these are currently Sub Saharan Africans, people from the Caribbean, Men who have Sex with Men (MSM) and people from Eastern Europe, especially people with a history of intravenous drug use (IDU). Women and heterosexual men are over represented amongst those diagnosed late, with advanced disease. People who do not fit into recognizable highrisk groups are at high risk of late diagnosis – for example the over 60s and non-African women. Late diagnosis is the leading cause of HIV-related mortality and morbidity in the UK. 2.6 The second are those who are at risk of becoming infected in the UK. This group includes the first group, but because of sexual mixing, the second group includes all sexually active people in the UK, with young people at particular risk for the same reasons they are at risk of Chlamydia infection. Epidemiological evidence suggests that most new infections acquired in the UK are transmitted through sex between men. 3.0 a.

Prevention Is Government policy sufficiently focused on HIV prevention?

3.1 It is encouraging that the Public Health white paper explicitly mentions sexual health and HIV, including an intention to ringfence money for local authorities to commission nondiscretionary open access sexual health services. However, there is no mention of HIV prevention as a specific priority in the white paper. Nor is there acknowledgement of the fact that appropriate treatment and prevention of onward transmission is critically and inextricably linked to prevention. b.

Have the right groups been targeted in recent prevention campaigns?

3.2 Recent national prevention campaigns have been too generic or focused on the wrong groups eg young white British people. Most prevention campaigns in northeast London have been targeted at black African people and MSM. Health professionals recognize that more prevention work could be done with people living with HIV to reduce their risk of transmitting HIV to others, but barriers to this are often related to the inability to disclose status because of stigma. c.

To what extent have prevention initiatives targeted at injecting drug users been successful?

3.3 The harm reduction strategies for IDUs across the UK have been very successful, but there seems to be a growing group of IDUs from Eastern Europe who have more difficulty accessing services. d.

How could prevention initiatives be better delivered and evaluated?

3.4 The ultimate in prevention would be for people to know how to reduce their own risk of infection, have the capacity to reduce the risk and to choose to do so. The Government’s focus on creating cultural norms of healthy choices is welcome, but needs to take into account the many different cultures existing in small geographical areas throughout the UK. 3.5 More work is needed to reduce onward transmission in the MSM community, and in the Sub Saharan African communities. A broader approach might be more effective: looking at drug and alcohol misuse and mental health in the MSM community, and education around transmission and access to treatment in the African communities. 75

Letter from the North East London HIV and Sexual Health Clinical Network (NELNET) (HAUK 6)

3.6 Evaluation should still focus on the proportion of undiagnosed people and the number of new infections occurring in the UK, with local figures reported back to local authorities. 4.0 a.

Testing Are current testing policies adequate across the country?

4.1 No. The proportion of people who are infected but not yet diagnosed is falling too slowly, and the rates of late diagnosis are not consistently falling in most of north east London. b.

What can be done to increase take-up rates?

4.2 Two things are necessary. More people need to offer the test, and more people need to accept it. 4.3 People are most likely to accept the test if it is seen as normal, especially if the default option is to test – as evidenced by antenatal testing rates of >95% in north east London. Other successful approaches in NE London include testing at new registration visits in GP surgeries, embedding HIV testing in a men’s health checkup, delivering rapid tests in non clinical settings and introducing opt out testing for all people admitted to secondary care. 4.4 HIV testing and prevention needs a national focus, with an incentive system to encourage the offer of testing. Ideally HIV testing and prevention will become part of the public health outcomes framework, with public health incentive payments to local authorities for early diagnoses. Testing in acute care could be improved by making increasing numbers of HIV diagnoses a national clinical target, as with decreasing numbers of MRSA or C. difficile infections. Testing in acute care could also be increased via the financial incentive of CQUIN targets. 5.0 a.

Treatment How can the NHS best commission and deliver HIV treatment?

5.1 Commissioning HIV treatment carries a considerable financial risk because of expensive, though highly cost-effective, drugs. The geographical area commissioned needs to be large enough to achieve a manageable financial risk, and small enough to allow meaningful management of providers, given the different clinic profiles which exist. This includes the ability to set and monitor standards through clinical governance bodies. The pan London approach works well, partly because the size of the pan London HIV Consortium gives it bargaining power with pharmaceutical companies and therefore best value for the NHS, and partly because the number of clinicians engaged is large enough to reach a meaningful consensus on clinical issues including standards. 5.2 Good practice must be rewarded and guided by the use of CQUINs and the QIPP agenda. b.

What impact might the proposed new commissioning reforms have on HIV treatment?

5.3

Commissioning directly by the National Commissioning Board should mean equality of 76

Letter from the North East London HIV and Sexual Health Clinical Network (NELNET) (HAUK 6) access to HIV drugs for patients, but the commissioners will not be able to focus on local details, and so there are the risks for providers of inadequate accountability to commissioners and inadequate or inappropriate reward for good practice. These could be mitigated by regional clinical networks, which could focus on clinical governance including performance, and act as a communication hub. However, this would require additional investment into regional networks, and networks the size of NELNET are too small to cope with the financial risk of HIV drugs and too small to have significant bargaining power. The same issues would face local GP consortia. Patients would face a postcode lottery of access to drug treatment. 5.4 The Government’s decision to allow a maximum tariff for care, and for competition between providers on the basis of price to be expected, opens the way for non-NHS providers to offer cheap care for the large subset of stable patients on lower cost drugs, leaving NHS providers to treat the patients who need the greatest resources of time and money. c.

In what setting can treatment most effectively be delivered?

5.5 HIV is a long-term condition that is often complicated by physical and mental health co-morbidities, the effects of stigma, drug resistance, social deprivation and intercurrent pregnancy. Patients need coordinated care with specialist care provided by the relevant specialist, including general practitioners. It is not feasible to co-locate all necessary services. To ensure compliance with the key British HIV Association national standard that that all those living with HIV have access to all the services they require it is essential to have clear lines of communication, clear patient pathways and clear lines of internal and external accountability. Clinical networks such as ours provide the structure for this model to work in practice 6.0 a.

Cost Have cost considerations been satisfactorily balanced with public health imperatives in HIV: (i) prevention policy; and (ii) treatment policy?

6.1 Whilst prevention policy focusing on regular testing in at-risk groups is to be applauded the follow-on costs of lifelong HIV treatment must be recognized. Condoms are highly cost-effective in reducing risk of transmission but their effectiveness is limited by (male) user-dependence and failure rates. It is likely that other prevention technologies will soon be recommended e.g. vaginal microbicides and pre-exposure prophylaxis (PrEP). Initial evidence suggests that these approaches reduce risk of HIV infection in high risk individuals by around 40% overall but efficacy is significantly greater, particularly for PrEP in those with the highest adherence to treatment. This is likely to involve short to medium term increased cost but a longer term reduction in the epidemic. Treatment as prevention with increased HIV diagnosis through testing has been shown to be an effective strategy in reducing transmission as durable viral suppression is associated with a significant reduction in the risk of transmission to uninfected partners. However this will also cause short term cost pressures. Mathematical models predict a long term cost reduction if these strategies are successful. b.

Is research funding correctly prioritised? 77

Letter from the North East London HIV and Sexual Health Clinical Network (NELNET) (HAUK 6)

6.2 HIV is a multifaceted condition with biomedical, political and social causes and consequences. Health inequalities are particularly pertinent in this context and the intersection between the global and local HIV epidemics has particular resonance in the UK with the longstanding historical links to high endemicity regions of the world. This means that research questions frequently cross academic disciplines and intellectual boundaries. NE London is ideally placed to take forward some of these important questions by virtue of the diversity of the patient population living and seeking care in the area. However research funding structures in the UK are poorly equipped to deal with this intellectual complexity and important research questions remain unaddressed and unfunded as their natural home is disputed by funding bodies. As NHS clinical services become ever more constrained and funding is tighter it is likely to become more difficult to embed research in overstretched clinical settings. Much of the finance for HIV research comes from the pharmaceutical industry and may drive the research agenda in a particular direction. Increasing research funding in areas of disciplinary overlap with collaboration between research councils would help. Only certain funding streams are eligible for study adoption into the NHS research portfolio with any funding coming from outside the UK being excluded. This excludes various HIV related funding bodies such as the Gates Foundation. We would ask the Committee to look at this issue during its deliberations. 7.0

Stigma

a. What impact does stigmatisation of those with HIV have on those infected, and on addressing HIV as a public health problem? 7.1 Professionals working with people living with HIV often see their patients lose their spousal relationships, family relationships, friends, income, accommodation, physical safety and mental health as a direct consequence of their HIV diagnosis. We regularly see patients who have refused to follow medical advice to test for HIV until they develop an AIDSdefining condition, patients who are unable to believe their positive HIV test result, and others who disappear from services once they have been diagnosed. Fear of losing intimate relationships and social capital influence people’s ability to disclose their HIV infection to their partners and family members. Services that provide HIV specific care are not used by many who need them for fear of recognition by others form their communities or anxiety about confidentiality. These factors increase social isolation, inhibit health promotion and restrict the lives of people with HIV. 7.2 People with HIV still experience stigma when trying to access health and social care services, and this reduces their willingness and ability to access care. b.

Where are problems of stigmatisation most acute?

7.3 Groups most affected by stigma in north east London are Black Africans, especially those from western Africa, and Caribbeans. MSM and women who have sex with women from these groups face stigma because of their HIV and stigma because of their sexuality. People who belong to some religious groups face stigma because of their HIV or their sexuality. c.

What measures are currently taken to tackle HIV stigmatisation? What more should be done?

7.4

Current legislation banning discrimination is very useful, as is Personal, Social, Health 78

Letter from the North East London HIV and Sexual Health Clinical Network (NELNET) (HAUK 6) and Economic work in schools. An agreement by the national press to report responsibly on HIV-related issues would be useful. 7.5 To reduce stigma requires a change in people’s worldview. Because of the many cultures within the UK, there are many different group worldviews, and it is unlikely to be cost-effective to try to change many of them. A detailed discussion of strategies to reduce stigma is outside the capability of the authors of this response, but many members of out network have ideas, which could be collated into a separate document if requested. 14 February 2011

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Memorandum by the Personal, Social, Health and Economic Education (PSHE) Association (HAUK 86)

Memorandum by the Personal, Social, Health and Economic Education (PSHE) Association (HAUK 86) Introduction 1. Could you please introduce yourselves and your organisations, and give some details about the work that you do around HIV and AIDS? The PSHE Association is a national subject association for Personal, Social, Health and economic education (PSHE education) which seeks to improve the quality of teaching in this subject. It provides support to schools and teachers for all aspects of PSHE education including personal relationships, sex and relationships education, risk and safety education which provide a framework and context for HIV/Aids education Funding 2. How has your work been affected, and how will it be affected in the future, by the prevailing financial climate? Currently the PSHE Association is waiting to hear whether it will continue to be supported in its work by a government grant. Our work is affected by the cut in local authority adviser posts which provide face to face support for teachers and schools in their locality. We are also finding that schools are less willing to commit to the cost of membership and staff training and development opportunities in the current financial climate. National Strategy 3. The Department of Health is to publish a new Sexual Health Strategy this year. What are the main priorities that you would like to see addressed in that document? We would like to see as a priority that sex and relationships education (SRE) be delivered to all pupils in all schools as part of high quality PSHE education taught by trained, confident and competent teachers. The Government White Paper on Education: The importance of Teaching published in November 2010 recognised the ‘need for high quality sex and relationships education and that children can benefit enormously from high quality PSHE education ’ so that ‘they can make wise and informed choices’ . The Government White Paper on public health, Healthy Lives, Healthy People, also published in November, similarly recognised that ‘Good schools will be active promoters of health in childhood’ and ‘will provide age appropriate teaching on relationships and sexual health…’ The Sexual Health Strategy must take account of the important place of schools and colleges in promoting broad SRE which also deals consistently with sexual health, including the effects of bacteria and viruses such as those associated with sexually transmitted infection as currently required through the statutory programme of study for science at key stages 3 and 4. 80

Memorandum by the Personal, Social, Health and Economic Education (PSHE) Association (HAUK 86) Education and awareness 4. How educated are people, especially young people, about HIV and AIDS? How has the level of education changed over time? According to the latest Ofsted report, Personal, Social, Health and Economic Education in Schools 2010, provision for PSHE education was good or outstanding overall in more than three quarters of the schools visited however in about a third of the schools visited, pupils had some gaps in their understanding of sex and relationships, (drugs, including alcohol, and mental health, and their knowledge of mental health issues in particular was generally underdeveloped.) The PSHE Association suspects that those schools which have less than adequate provision will not deal effectively with sexual health in particular though science or PSHE education. The reasons for this are not simple. For some schools the reluctance to teach SRE will be due to cultural, community and faith issues and a genuine fear of upsetting parents. For others it is a low priority as schools drive to obtain grades A-C at GCSE, whilst some schools provide insufficient time in their timetable arrangements (less than an hour a week to cover the non- statutory programme of study) and/or delivered through tutorial time where teachers are neither trained, confident or competent Where it is taught we suspect that the transmission of HIV though sexual contact, drug misuse (sharing needles) etc is probably dealt with adequately within work on STIs along with the preventative measures that can be taken and drug misuse through sharing needles However, there are two concerns. Firstly people with HIV infection are still stigmatised and not enough is being done to show that people with HIV can lead normal lives and the myths surrounding infection challenged. The PSHE Association is currently working with the Body and Soul Charity to produce some curriculum materials to address this. Secondly in addressing misconceptions and challenging stereotypes and homophobic and racist attitudes in relations to HIV/Aids Not at risk of HIV/Aids – a virus in Africa and among gay men HIV is seen by young people as being rather like flu or diabetes … if infected it can be treated… few people die from AIDs because there are treatments now widely available. It is the case that if teachers are not confident about teaching SRE because of their own lack of knowledge then it is more than true for HIV/AIDS specifically with the prejudices this brings. 5. How well are children taught about HIV and AIDS at school? Is it sufficiently prioritised? Does anything need to change about the way in which children are educated about sexual health more generally, and HIV and AIDS in particular?

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Memorandum by the Personal, Social, Health and Economic Education (PSHE) Association (HAUK 86) Children in our schools living with HIV/AIDS or their parents; we talk about conditions such as asthma, diabetes – chronic illness but teachers less confident to manage this. More than anything else those teachers responsible for teaching PSHE education and SRE need high quality training and resources if they are to become confident and competent to teach sexual health in general and HIV/AIDs in particular. This would be particularly important if there are plans to revisit a national campaign. However, there are no plans that the PSHE Association is aware of to include PSHE education in Initial Teacher Training. All trainees are currently required (QTS 15 TDA) to Know and understand the relevant statutory and non-statutory curricula and frameworks, including those provided through the National Strategies, for their subjects/curriculum areas, and other relevant initiatives applicable to the age and ability range for which they are trained. All trainees are expected to be familiar with the National Curriculum guidance on personal, social, health and economic education (PSHE education) relevant to the age ranges they are training to teach (the standards are about to be reviewed by the DfE). 6. Are there locations other than schools where education around HIV and AIDS should be delivered? Church/faith groups, youth clubs, and youth settings such as Scouts and Guides may provide opportunities, but again the issue of trained, competent and confident facilitators would be an issue. However, there has been some excellent/successful work in Sheffield and Manchester of young people becoming peer educators. 7. Do you think that young people get enough information on how to access sexual health and HIV services? The UKYP research into young peoples’ views on SRE in 2007 showed that not only did young people want properly taught SRE as part of PSHE education but also access to sexual health services in their schools. Knowing where to get help including national organisations such as Relate, FPA, Brook, and others is required as part of the PSHE education Personal well-being programme of study. Some schools do provide on site health services though appointed school nurses but these are the exception rather than the rule. However, a significant number of school nurses have undertaken the National PSHE CPD Programme (now outsourced to Babcock 4S as government funding has been discontinued) which deals with SRE. 8. To what extent should sex and relationships education be a mandatory part of the school curriculum?

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Memorandum by the Personal, Social, Health and Economic Education (PSHE) Association (HAUK 86) The PSHE Association believes that SRE should be a mandatory part of the school curriculum within a mandatory programme of high quality PSHE education delivered by trained teachers supported by local health services/other personnel as appropriate (Healthy School context). Mandatory because this is probably the only way to ensure that all children and young people have access to correct information ( appropriate to their age and maturity) and the learning opportunities to develop the necessary skills and confidence to help make informed healthy choices and manage risk. SRE should be responsive to the needs of the children/young people, their parents, and to local health data, and be age/maturity appropriate. It should cover relationships, healthy lifestyles, challenging prejudice and discrimination, and help young people to manage risk in their lives (Relationships, Responsibility and Risk) Faith schools and SRE 9. Do you have any concerns about the provision of sex and relationships education within faith school settings? The Church of England Education Board and the Catholic Schools Education Service have provided guidance to schools which is supportive of SRE within the values and mores of the church’s teaching. The issue is how individual schools make use of this guidance. The guidance being double edged enabling enlightened schools to deal with sexual health in an appropriate manner whilst enabling those less enlightened or confident to do very little. Of greater concern would be some schools with a high muslim population where SRE is avoided to avoid ‘upsetting parents/the Mosque. Excellent work has been undertaken with such schools in some localities e.g. Tower Hamlets but the Association is aware from its members of some schools where such work is avoided. Also of concern would be the freedom of ‘Free Schools’ to avoid meeting children and young peoples’ entitlement to PSHE education and SRE. However, a recent survey of head teachers for Headspace asked senior leaders what level of importance they gave PSHE in their school. Almost all of the 445 school leaders surveyed (98%) reported that PSHE was important in their school, with 81% of primary leaders, and 67% of secondary leaders, stating that the subject was ‘very important’. School leaders were also asked whether the fact that PSHE had not been made a compulsory element of the curriculum in England – as the previous government had planned – had affected their school’s approach to the subject. As Figure two shows, most school leaders (84%) reported that this had had no effect in their school, while 14% said that PSHE was actually more important now than in the past. The majority of school leaders (85%) also reported that any more flexibility within the curriculum would not change their approach to PSHE, but more than one in ten (12%) felt that that they would place more importance on the subject if they had more flexibility in the curriculum they offer. Risk behaviours 83

Memorandum by the Personal, Social, Health and Economic Education (PSHE) Association (HAUK 86) 10. The Health Protection Agency told us that optimism about the effectiveness of HIV treatment, combined with a lack of knowledge about HIV amongst younger generations, has increased the level of behaviours that put people at risk of contracting HIV. Do you agree? What can be done to address this? The risk of contracting HIV does not appear to be on young people’s health agenda in the way it was some 20 years ago so I think that it is important to address the concept of risk properly with in SRE work, not simply information about transmission and prevention. Also communication/negotiation skills – not enough to know use a condom; how do I negotiate this with a partner. Risk is a key concept with in the PSHE education Personal well-being programme of study. Having the confidence to take risks is essential to enjoying and achieving in learning and life. However, the ability to recognise, assess and manage risk is essential to physical safety and mental and emotional well-being. The concept of risk runs throughout PSHE education and should be included in SRE too. 11. Should HIV prevention and awareness campaigns be targeted towards high-prevalence groups, such as men who have sex with men, or more broadly towards the general population? There is a danger when campaigns are targeted at high prevalence groups that the population more broadly see this as not an issue for them (they don’t need to be concerned about it) and that it reinforces misinformation about HIV and homophobic and racist attitudes. However with any campaign we can’t control who sees it and how they make sense of it. Children may see and take questions into school ‘ don’t die of ignorance’ 12. How well do you believe that existing HIV awareness and prevention campaigns are working? Are the right messages being used? Are the campaigns being properly evaluated? If young people and their teachers are lacking in awareness and proper understanding about HIV Aids then campaigns are evidently not effective. 13. HIV testing and prevention work is to be commissioned and co-ordinated by local authorities within the new Public Health England structure. This is one part of local responsibility for comprehensive sexual health services. Are you excited or worried by this proposed approach? a. Is there any risk of HIV prevention being fragmented nationwide? There needs to be an understanding of the curriculum opportunities for teaching about HIV Aids in schools and the kind of support that teachers and schools need ( both in terms of training and promoting the importance of such teaching to parents and community) 84

Memorandum by the Personal, Social, Health and Economic Education (PSHE) Association (HAUK 86) Stigma and discrimination 14. HIV remains a stigmatised condition. What role can education play in tackling this stigma and discrimination? How can this role best be delivered? Schools are well placed to tackle stigma and discrimination through PSHE education. However, the need for trained confident and competent teachers to deliver on this is a given. The PSHE Association is working with the charity Body and Soul who are addressing this through a national campaign including the production of resources for secondary schools. 15 April 2011

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Memorandum by Positively UK (HAUK 37)

Memorandum by Positively UK (HAUK 37) Positively UK champions the rights of people living with HIV through peer support, advocacy and information. We campaign against discrimination, promote positive attitudes and equitable access to health, and strive to increase the involvement, voice and visibility of people living with HIV. The charity was founded as Positively Women in 1992, and changed to Positively UK in June 2010, registered charity number 1007685. Positively UK presently has 1,246 registered and active service users. 1. Monitoring a. How robust is the current system for monitoring the number of people with HIV in the United Kingdom? 1.1 The Health Protection Agency’s monitoring is thorough; data collection from clinics and anonymous surveillance provides a comprehensive picture of people diagnosed with HIV, where they access treatment, key groups and demographics affected as well as predicting areas of future need with those HIV positive but undiagnosed. b. Will the proposed public health reforms impact on this system? 1.2 It is difficult to say how the health reforms will impact on this. There is risk of monitoring becoming a low priority and fragmented. The proposed shift to local commissioning for a condition that has no even geographical spread may impact upon this. The loss of the Sexual Health and HIV Independent Advisory Group and the removal of the AIDS support grant may also affect commitment to monitoring. The HPA is to loose its status as a non-Department public health body and be absorbed in the new Public Health Service. Any changes must ensure that • • •

the work of the Health Protection Agency remains there is adequate funding to continue its work to the current high standard that it retains an element of independence in its operations and information published is transparent and free from interference of politicians and Whitehall

c. Could anything be done to improve monitoring? 1.3 Ensure that monitoring is in line with the UNAIDS’ “Three Ones" principles, to achieve the most effective and efficient use of resources, and to ensure rapid action and resultsbased management. The UK government signed up to this initiative and it includes: ‘One agreed country-level Monitoring and Evaluation System’. There should be no dichotomy between the national and international monitoring commitments. d. What groups in particular are at risk from HIV? 1.4 Everyone is at risk from HIV. The groups at most risk from acquiring HIV are those in high prevalence communities where stigma and silence prevent this being acknowledged this. African communities continue to be at risk; although where immigration is concerned many of this group are infected abroad and diagnosed when they arrive to the UK. Within the African diaspora in the UK it is likely that the rates of HIV mirror those of the country of origin. Gay men continue to be the other high risk group. An emerging group is people in 86

Memorandum by Positively UK (HAUK 37) their 40s who may have been in long-term relationships and married; those relationships come to an end, people are single and commencing new sexual relationships. They require support in understanding risks and negotiating safer sex with new partners. Monitoring on the scale currently undertaken by the Health Protection Agency is an investment in understanding and meeting the needs in high prevalence areas 2. Prevention a. Is Government policy sufficiently focused on HIV prevention? 2.1 While policy initiatives do focus on HIV prevention, we need to develop a more cohesive approach, so national initiatives foster and maintain local initiatives; and linking HIV into other STI campaigns. 2.2 A PSHE curriculum should form part of a cohesive approach to prevention. 2.3 The confidence and self esteem needed by people with HIV to practice safer sex, is key in preventing onward transmission. Community based organisations (CBOs) provide psychosocial support on HIV, relationships and disclosure. Disinvestment in CBOs is likely to lead to increased HIV transmission. 2.4 Free HIV treatment should be available for all HIV positive people regardless of asylum status. Good adherence to HIV treatment lowers the risk of transmission. Charging for treatment stops people in poverty accessing medications, this not only increases risk of onward transmission of HIV but impacts upon personal health and provision of healthcare, as the person is at increased risk of opportunistic illness leading to increased A&E access and in-patient hospital care. 2.5 Free infant formula milk needs to be available to HIV positive mothers regardless of asylum status. Breast feeding has a risk of HIV transmission so the restriction on formula milk is poor prevention practice. The UK funds treatment programmes in developing countries but jeopardises infant health nationally. b. Have the right groups been targeted in recent prevention campaigns? 2.6 Campaigns have focused on gay men (particularly through the CHAPS initiative) and Africans (through NAHIP). As gay men and Africans present with high rates of HIV targeting these groups is appropriate. However these groups have been targeted to the exclusion of all others. This has a two-fold impact, firstly it stigmatizes Africans and gay men leading the general public to perceive they are the ‘only’ groups at risk; secondly it provides no support to other parts of the population in raising awareness of HIV and encouraging testing. c. To what extent have prevention initiatives targeted at injecting drug users been successful? 2.7 There has been a reduction in the rate of transmission among drug users. However, through our work in prisons, we raise the question of drug use in prisons and the potential for HIV transmission. We are concerned at the standards of care and failure of good practice by prison staff. Inmates with HIV have, in some cases, been prevented from accessing their life saving medication. d. How could prevention initiatives be better delivered and evaluated? 87

Memorandum by Positively UK (HAUK 37) 2.8 A cohesive approach linking initiatives at all levels and across agencies together; a local approach and local commissioning is unlikely to be sufficient. There should be • • •

national programmes with local application sensitive targeting, support for people with HIV to overcome low self esteem and deal with stigma and discrimination. robust evaluation and investment in evidence based research

3 Testing a. Are current testing policies adequate across the country? 3.1 No. There is variation in testing policies, and currently health providers such as GPs are advised to focus on key risk groups of Africans and gay men. This has in the past resulted in instances of people from other socio and cultural groups presenting at practices with poor health but not being offered or referred for an HIV test. Positively UK in the last year has supported an Asian woman; both she and her husband and been living with undiagnosed HIV and presenting with serious health problems. As they were not considered at risk of HIV, they were not offered an HIV test; subsequently the husband died, and only then was the woman diagnosed and able to receive the support and treatment she required. b. What can be done to increase take-up rates? 3.2 Currently reaches specific groups such as those accessing GUM clinics and receiving ante-natal care; however other vulnerable communities with high prevalence need to be reached. Increasing testing opportunities for those groups that are missing from the testing picture; this could be achieved by increasing the availability of testing and integrate HIV testing wider into healthcare settings; • • • • •

GP clinics Accident and emergency As part of general health checks. Non statutory testing places, i.e. community testing Introducing home HIV testing

3.3 Support healthcare staff to identify the signs of HIV in people untested. This would include routine HIV testing where there are other disease indicators for HIV such as TB, and opportunistic infections. 3.4 Ensure all healthcare staff and practitioners adhere to the BHIVA guidelines on testing 3.5 Antenatal testing should • •

be routine, not opt in if it remains opt in, should have a standard form of offer.

No woman should be told, ‘you don’t need an HIV test do you?’, this has prevented women testing who then were found to be HIV positive, as was their new born baby, something preventable. 3.6 The success of HIV testing is that there is a growing number of people being diagnosed, but adversely this also relates to the failure of safer sex and PSHE in schools. 88

Memorandum by Positively UK (HAUK 37) 3.7 The benefits of testing should be promoted in a positive way; knowing your HIV status leads to: • • •

Good general health monitoring Access to treatment and wellness Prevent onward transmission

4 Treatment a. How can the NHS best commission and deliver HIV treatment? 4.1 There should be greater collaboration across healthcare commissioners for the procurement of HIV medications. This would support bulk buying and reduce purchasing costs. There also needs to be clear guidelines and agreements into front-line prescribing of HIV medications where a common approach to prescribing is adopted at all clinics. Work in this area is currently being undertaken by the London HIV Consortium. 4.2 Within this there needs to be an understanding of the implications on HIV regime and adherence. Purchasing and prescribing the cheapest drugs may result in cost savings in procurement but result in patients facing complex regimes leading to low adherence. If patients are not adhering there will be increased costs in delivery of in-patient and emergency care. Investment in purchasing drugs that provide simple regimes, and improve adherence will result in improved health and savings in the long-term. 4.3 Treatments cannot be taken out of context and are only part of the healthcare needs of people living with HIV. With ageing populations, people living with HIV and taking medications long-term there are increased risks of people experiencing related health conditions. The primary care, and for those with two or more long-term conditions, additional acute health care needs of people living with HIV need to be addressed. Many people living with HIV do not access GPs; perceive GPs as being unable to effectively treat ongoing health needs of HIV positive patients, and being discriminatory. Introducing shared care is vital to support overall health needs of patients. b. What impact might the proposed new commissioning reforms have on HIV treatment? 4.4 There are concerns at shifting HIV commissioning to GP consortia. In 2010 Positively UK conducted research into how people living with HIV and GPs interact and published the report Primary Care Access: How General Practice Can Better Respond to the Needs of People Living with HIV (available at www.positivelyuk.org). The report found lack of knowledge of HIV and issues affecting patients within General Practice. There are a number of contributing factors: firstly prevalence of HIV is low compared to other conditions; in London 4% of the population have diabetes, 1.5% congestive heart failure but only 0.37% HIV; diagnosis of HIV, unlike other conditions, has historically been undertaken at GUM clinics and away from General Practice; reluctance of many patients to disclose their HIV status to their GP, and seek all healthcare from their HIV clinic. As a result GPs have low exposure to patients living with HIV in their practices. The research team themselves encountered resistance from GPs to contribute to the study or increased their knowledge of HIV despite the involvement of Primary Care Trust Commissioners and offer of financial incentives. Testimonies from patients also found that GPs have poor knowledge of HIV, as a result do not trust GPs to manage their healthcare, or prescribe medicine that does not interact with HIV treatments. There were reports of patients encountering prejudice and 89

Memorandum by Positively UK (HAUK 37) discrimination by practice staff. The long-term diagnosed, notably gay men, also stated resistance to accessing GPs, over concerns in the GPs knowledge, fear of discrimination and having to deal with more changes in how their receive their healthcare. 4.5 There is a genuine concern that GP consortia do not understand the implications of HIV, and the needs of people living with HIV. This combined with reluctance, for whatever reason; to engage and increase their knowledge will detrimentally affect the commissioning of HIV services when transferred to GP consortia. HIV training and awareness needs to be compulsory for GPs. c. In what setting can treatment most effectively be delivered? 4.6 Positively UK remain committed to the delivery of HIV treatments by HIV clinicians; at present this is best undertaken within acute centres, surroundings patients trust. HIV treatments should remain with specialist staff as prescribing of antiretroviral is a specialist field, clinical staff can identify opportunistic infections associated with HIV or treatments side effects, and patients are more willing to engage with HIV clinicians and nurses than GPs in discussing issues that directly impact upon HIV such as sexual health, recreational drug taking. There is a need to develop a model of shared care between HIV clinicians and GPs. While shared care models are in operation across other conditions, HIV is still a relatively new condition, and the affects of living long-term and ageing with HIV are only being realised. The British HIV Association have established a working group to review areas of shared care, the group includes healthcare practitioners and patient representatives including a member of Positively UK staff. 5 Cost a. Have cost considerations been satisfactorily balanced with public health imperatives in HIV: (i) prevention policy; and (ii) treatment policy? 5.1 While there is an equitable balance in prevention and treatment policy; the two are poorly integrated and as a result there is false investment. People living with HIV, accessing and adhering to treatments are at reduced risk of transmitting HIV to sexual partners. However current healthcare policy denies treatments to people with no legal immigration status to remain in the UK. This policy directly contravenes prevention policy and practice and places the wider community at risk. 5.2 In addition in order to effectively address treatment policy, the wider support needs of people living with HIV need to be acknowledged. HIV is unlike any other condition; it is met with huge stigma in society and unlike other conditions is sexually transmissible. People living with the virus have psycho-social needs and Positively UK’s experience of providing support for over 20 years and research undertaken as part of the Counterpoint Policy Alliance demonstrates that unless these needs are met, people will remain isolated, less likely to come to terms with their HIV, less likely to access and adhere to treatments. People living with HIV present with poor mental health; psycho-social needs of counselling and discussing HIV with peers also support people understand HIV and take greater responsibility for their own healthcare. b. Is research funding correctly prioritised? 90

Memorandum by Positively UK (HAUK 37) 5.3 HIV is a relatively new condition and only now are we beginning to witness people ageing and growing old with HIV. There is still a great deal to understand in how HIV effects people’s health long-term, impact and association with other long-term conditions, and the psychosocial needs of people living with long term. Research now needs to be prioritised into this area. 6 Stigma a. What impact does stigmatisation of those with HIV have on those infected, and on addressing HIV as a public health problem? 6.1 Positively UK provides support to over 1,000 people living with HIV every year. Our experience demonstrates that stigmatisation of HIV leads people to live in isolation, fearing to disclose their HIV status and fearing to engage with others for fear of accidentally revealing their HIV status. Research has found that adherence to HIV medications is linked to the extent to which someone disclose their HIV status. When someone hides their HIV status, cannot talk about it, treating it as something shameful, their ability to come to terms with HIV and manage their medication is severely reduced. Provision of support to people living with HIV, introduction to peer networks and other people living with HIV can help tackle the effects of stigmatisation on an individual level. b. Where are problems of stigmatisation most acute? 6.2 A major group often ignored when considering stigma are people living with HIV themselves. HIV is met with huge stigma in society; a person diagnosed with HIV is a member of society and in many cases may have held prejudiced views. Within society not only is HIV stigmatised by key groups of face discrimination e.g. gay men, immigrants, drug users. This can reinforce prejudice that is internalised by a person living with HIV. In discussing disclosure Positively UK’s service users often state they do not want to tell others they are HIV positive because they will be judged and perceived as drug addicts and having lots of sexual encounters. People living with HIV require support in managing this self-stigma through peer mentoring and role modelling, meeting other people living with HIV and accessing peer support groups. 6.3 Positively UK has encountered stigmatisation within statutory services providers: • • •

Healthcare providers notably GPs as outlined above, in our research one GP being trained in identifying HIV, stated that while a patient of his presented with the systems he couldn’t possibly be HIV positive as he was a ‘respectable gentleman’ Schools where a parent has informed a teacher and that teacher now perceive it as their duty to inform every parent in the school, despite there being no risk of HIV transmission through normal activities in a school Social Services, since the removal of specialist HIV social workers show huge ignorance and stigma, in the most severe case Positively UK encountered a child was removed from the family by a social worker as they deemed the parent unfit due to her HIV status; the case was appealed and won.

c. What measures are currently taken to tackle HIV stigmatisation? What more should be done? 6.4 There are few statutory initiatives to tackle HIV stigma that Positively UK can identify. Although the DDA and now the Single Equality Act address HIV from point of diagnosis, this 91

Memorandum by Positively UK (HAUK 37) tackles HIV discrimination after the fact but is not proactive. Good examples of tackling are stigma are: • Training with GPs in West London undertaken by Imperial Healthcare Trust and Positively UK; this initially experience a low take up until it was made compulsory by commissioners; the initiative was commissioned by NHS Westminster, NHS Kensington and Chelsea and NHS Hammersmith and Fulham • The Stigma index; which has undertaken research with people living with HIV into instances and affects of stigma; this was funded through private donations • Schools packs developed by the National AIDS Trust and Positively UK, raising awareness of HIV and tackling stigma as part of the PSHE curriculum February 2011

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Supplementary Memorandum by Silvia Petretti, Community Development Manager, Positively UK (HAUK 79)

Supplementary Memorandum by Silvia Petretti, Community Development Manager, Positively UK (HAUK 79) 1.

We have heard about the need for greater awareness and education amongst the population to reduce the spread of HIV. From your experience, should the focus be on targeting high-prevalence groups such as men who have sex with men, or on broader campaigns, including those in schools?

I think it is crucial to have broadened campaigns reaching the wider population. Wider campaigns would help reduce stigma, pointing out that HIV can affect anybody, and also encourage testing. 2.

In your experience, do you feel that people living with HIV get enough help in understanding how to prevent onward transmission of the infection? Should those involved in HIV treatment and care do more to help people with HIV from passing on their virus?

I believe that to support people living with HIV not to transmit HIV we need more then just information. Information is not enough to act on prevention. As the African Healthy Policy Network pointed out in their report ‘The Knowledge, The Will and The Power’ – 2008 http://www.ahpn.org/publications/index.php?int_id=4&pub_id=57 ) good prevention is rooted in: knowledge, will and power. Knowledge the technical understanding of how HIV is transmitted Will understanding the benefits of avoiding transmission, self esteem, feeling part of the solution Power poverty, gender dynamics, marginalization can have an effect on your capacity to protect yourself. For example a young woman may have the factual knowledge about HIV, however if she has very low self esteem, or if she is economically or emotionally dependent on her partner, she could find it impossible to negotiate condoms, even when she knows that they can prevent HIV and other STIs. Also for other groups, such as MSM, sexual behaviour and risk taking may be influenced by other factors, such as internalized homophobia. It is important to understand that sexual behaviour is driven by a range of complex issues and multifaceted interventions are needed to change it. I do not think that consultants are best placed to support the adoption of good prevention strategies. They often have very little time to spend with their patients and not a large expertise in changing behaviour. Moreover, some patients may feel uncomfortable of discussing intimate parts of their lives with a physician. I believe that peer-lead interventions which increase the visibility of people living with HIV can play a key role in prevention: firstly by spreading the message that anybody can get infected with HIV, secondly by eliminating stigma towards people with HIV, which often acts as a barrier to access health services: including testing and treatment.

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Supplementary Memorandum by Silvia Petretti, Community Development Manager, Positively UK (HAUK 79) Peer lead interventions can also play a paramount role in secondary prevention, prevention among people who are already HIV positive and who could transmit HIV to others: through peer-support people living with HIV can gain safer sex skills and confidence to disclose their status to their partner, thus avoiding new infections. Because of those reasons I think that the voluntary sector and community based organizations are best placed to deliver good prevention services. 3.

The Health Protection Agency told us that optimism about the effectiveness of HIV treatment, combined with a lack of knowledge about HIV amongst younger generations, has increased the level of behaviours that put people at risk of contracting HIV. Would this tally with your experiences? What can be done to address this? I believe that the result of a lack of real knowledge about HIV is playing a role in the increased infections among the young generations. Better SRE in schools should be a priority and should cover all aspects of sexuality including gender expectations, equality and homosexuality.

4.

During the session, the acquisition of HIV among the prison population was discussed. Do you have any additional information concerning the numbers of those acquiring HIV in prison, the means by which HIV is transmitted and measures taken to prevent such transmissions?

There is a lack of research and data on HIV in prison. The report by NAT and the Prison Reform trust ‘HIV and Hepatitis in UK Prisons’ (2005) is out of date. (http://www.nat.org.uk/Media%20library/Files/PDF%20documents/prisonsreport.pdf) However we can assume that sex and drug use take place in prison, and we know that condoms and clean needles are not available. Because high prevalence groups are represented disproportionally in prison, this creates a very high risk situation. It is crucial that prisoners have access to the same level of HIV, STI and other blood born viruses’ prevention as the general population, in accordance with the Human Rights Act. 30 March 2011

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Memorandum by Public Health, NHS Lambeth and Sexual Health Commissioning, LSL Alliance (HAUK 9)

Memorandum by Public Health, NHS Lambeth and Sexual Health Commissioning, LSL Alliance (HAUK 9) Context: The UK HIV epidemiology shows a distinct epidemiological pattern with high prevalence of infection in urban centres. London accounts for just under half of the England burden of HIV. The three boroughs Lambeth and Southwark and Lewisham (LSL) in South East London account for ~ 24% of the London caseload with a prevalence of 13, 10, and 7 per 1,000 respectively. LSL has been on the forefront of implementation of the 2008 National HIV Testing guidance. We ask that this unequal distribution of HIV is to be considered in the House of Lords review of current prevention, testing and treatment strategies. 1. Monitoring a. How robust is the current system? The current system for monitoring the number of people with HIV in the UK is robust. However, there is a need for a national real-time treatment monitoring dataset which enables PCTs to validate treatment costs in line with patient residence. The Health Protection Agency is the current provider of epidemiological information on the number of people with HIV in the UK. HPA information is reliable and is increasingly used for HIV treatment quality assurance and commissioning (e.g. the national roll-out of London clinical outcomes). b. Will the proposed public health reforms impact on this system? It is difficult to be certain what impact public health reforms will have as there is uncertainty about the details of the changes. It is important that changes do not have a negative impact on the ability for such an agency to provide robust monitoring and surveillance. Depending on the outcome of the transition, it could be an opportunity to further enhance the excellent work that the HPA do, in particular supporting local and regional prevention and service commissioning with enhanced epidemiological profiles for high prevalence areas. In addition, there is a great deal of useful data that is supplied to the HPA which can’t be currently analysed due to personnel resource limitation as other key data is prioritised. There is a concern that a further reduction in personnel may lead to a reduction in key epidemiological analysis essential for planning regional and local prevention activities. It is unclear how the future integration of the HPA with the newly forming Public health England (PHE) will impact on existing surveillance systems. The newly formed PHE may present opportunities to enhance the implementation of epidemiological intelligence recommendations. c. Could anything be done to improve reporting? In light of recent policy drivers (e.g. expansion of HIV testing outside GUM settings) and the changing and complex care needs of the population, there are currently very limited HIV testing-related and health information systems outside the HPA, in particular in primary care and community settings where the majority of patient contact with health services occurs. Information systems to collect and collate accurately HIV testing information systems in nonspecialist health service settings will be crucial to monitor progress with the expansion of 95

Memorandum by Public Health, NHS Lambeth and Sexual Health Commissioning, LSL Alliance (HAUK 9) HIV testing. Furthermore, it is generally accepted that HIV infection (if diagnosed early) is a long-term chronic condition, with increasing prevalence. However there is currently little HIV-related NHS information in wider NHS services, especially primary care, to support local planning and commissioning of high quality, sustainable HIV long-term condition service models integrated in existing health services (through a bottom-up approach). d. What groups in particular are at risk from HIV? HIV in the UK is predominantly an issue for two major groups: men who have sex with men (MSM) and Black-Africans. So far there is little evidence of significant heterosexual UK acquisition/transmissions at population level, however there may be some degree of underestimation in high prevalence areas. 2. Prevention a. Is Government policy sufficiently focused on HIV prevention? The number of people living with HIV in the UK has reached an estimated 86,500. A quarter of these people are unaware of their infection and over 50% of them presented late. New HIV diagnoses are continuing. Effective treatment has transformed HIV from a fatal disease to a long-term chronic illness. If diagnosed early, it is expected that most patients can expect a near normal life expectancy. It is estimated that the prevention of one new HIV infection would save the public purse between £280,000 and £360,000 in direct lifetime healthcare costs. HIV prevention in the UK over the past decade has been largely led by community organisations, with a focus on behavioural prevention interventions with reliance on small and mass media. Department of Health-funded national preventative programmes have historically been output rather than outcome focused, with patchy provision across the country. Moreover, there is absence of evaluation of the CHAPS programme since 2005. These DH funded programmes should be reviewed. There is clear evidence that early diagnosis and linkage to care reduces HIV related morbidity and mortality. There is also increasing evidence on the prevention benefit of early diagnoses by significantly reducing viral load and infectiousness. NAT is working on the policy and clinical implications of the evidence of the effectiveness of antiretroviral therapy (ART) as a prevention tool. The emerging evidence should be reviewed and included in synergistic prevention strategies. b. Have the right groups been targeted in recent prevention campaigns? It is right to target prevention campaigns at MSM and Black Africans, but it is also important to note that many individuals who fall into these broad epidemiological categories are also members of the wider public, who do not often self-identify as such e.g. outwardly heterosexual men who meet other men for sex via the internet. These individuals are unlikely to encounter the safer sex and HIV prevention messages intended for them as members of an “at risk” group. Consequently, it is arguable that a population-wide HIV education would be helpful, complemented by targeted interventions for specific at-risk groups. In addition, the inclusion of teaching about HIV and same sex relationships within Sex and Relationships Education in schools would do much to ensure that every citizen has a strong, basic awareness of HIV transmission, safer sex and risk minimisation. c. To what extent have prevention initiatives targeted at injecting drug users been successful? 96

Memorandum by Public Health, NHS Lambeth and Sexual Health Commissioning, LSL Alliance (HAUK 9) HIV in London is predominantly sexually transmitted. However national data suggest higher levels of HIV transmission in IDUs now than a decade ago and continuing transmission of hepatitis B and C. Although the implementation of needle exchanges has been successful, expansion of sexual health/HIV testing and needle exchange programmes in local prisons and substance misuse services would complement prevention work more generally. d. How could prevention initiatives be better delivered and evaluated? There is a relative paucity of practical prevention intervention research in the UK. Much of the current prevention research evidence stems from a North American context, or predates the ART experience (ECDC 2009, HDA 2006, NICE 2006). The quality and accuracy of UK prevention interventions must be improved in line with the evidence base, biomedical/technical advances and the changing prevention needs of the population. At a local level, commissioned HIV prevention work should be subject to quality and content assurance in order to ensure consistency of messages and properly researched outputs. The delivery of HIV prevention should be a priority of both the NHS and government at national and local level. Currently HIV prevention and HIV treatment and care services are commissioned separately. This separation leads to lack of clarity as to the where the responsibility lies in driving some prevention programmes especially as funding for treatment and care declines. It is unclear how the government’s proposed reforms will impact on HIV prevention, although it appears that funding for sexual health services and HIV/STI prevention will be commissioned through local authorities, whilst HIV treatment and testing will be commissioned through the National Commissioning Board. The Public Health White Paper proposals risk perpetuating this split of the prevention-testing-treatment-care pathway. In addition, local, regional and national programmes should be streamlined and function in a more co-ordinated fashion, in order to reduce duplication and inefficiency, as well as ensuring a consistent approach. Funding of high quality prevention intervention research programmes in the UK will help to identify what works. 3. Testing a. Are current testing policies adequate across the country? The current testing guidelines from BHIVA (2008) are clear, but implementation has not been actively supported by the wider NHS at a local level across the UK. Testing rates in primary care settings remain extremely low, and secondary care settings fare little better with many opportunities for testing for HIV being missed. Initiatives such as the Halve It Coalition (“Halve it – early testing saves lives”) would be adequate, but need to be resourced and implemented effectively. NHS Lambeth is implementing a number of initiatives to increase testing in line with the National Guidance. Opt-out HIV testing in primary care as part of the new patient registration process has been rolled out across Lambeth, Southwark and Lewisham. However key practical challenges to implementation are that currently there are no national data collection methods (which means that data collection and validation has been difficult in relation to pilot activity in primary care settings). This should be examined by the committee in relation to the future direction of testing policy. In addition, HIV does not factor within the national clinical guidance specific to other specialities and this does need to be addressed 97

Memorandum by Public Health, NHS Lambeth and Sexual Health Commissioning, LSL Alliance (HAUK 9) as it compounds missed opportunities for testing and contributes to late diagnosis of HIV (and thus the higher likelihood of onward transmission). b. What can be done to increase take-up rates? Take-up rates can be very positively influenced by the normalisation of HIV testing. The impact of this can be seen in antenatal settings, where an implied consent approach to HIV testing has resulted in very high take-up rates. However, patient acceptability and uptake rates of HIV testing is only one aspect of the issue; taking an HIV test is considerably influenced by healthcare staff being able to offer HIV testing in an unexceptional manner, comparable to taking blood pressure or measuring height and weight to calculate BMIs. As a result of DH national testing pilots in 2010, it is clear that being offered an HIV test was acceptable to patients and cost effective in all settings, but that the main barrier to HIV testing was the clinical approach and experience of healthcare staff. Our experience at a local level demonstrates the importance of taking action to educate frontline healthcare professionals, to train them to promote the uptake of testing, and to feel comfortable in discussing and delivering an HIV test. This should be prioritised at a national level. 4. Treatment a. How can the NHS best commission and deliver HIV treatment? b. What impact might the proposed new commissioning reforms have on HIV treatment? A regional approach to commissioning of HIV treatment and care at a pan-London level has proved very successful in terms of the quality of patient care and achieving both clinical outcomes and economies of scale. There is also a need for a commissioning process that is able to deliver high quality care, ensuring patients have ease of access to care, and that care is equitable nationally. HIV care is a rapidly changing area of medicine. The changing needs of patients and the continuing rise in patient numbers puts pressure on a commissioning process to be sufficiently intelligent to be able to adapt to the evolving needs of patients and be cost effective in reviewing service delivery whilst maintaining high quality care. There is a risk that reforms may undermine much good work that is ongoing such as the development of a national tariff for the provision of HIV services. NHS reforms will need to ensure that appropriate support is given to evaluating and implementing changes to the delivery of HIV care to patients. c In what setting can treatment most effectively be delivered? Current HIV services are delivered via medical specialities such as GUM or Infectious Diseases (ID). They have demonstrated excellent treatment outcomes for patients started on therapy despite many patients presenting late. Engagement of GPs is crucial, not only to reduce undiagnosed HIV, but also to support the care of an ageing HIV positive cohort of patients, resulting in increasing co-management need of other common chronic conditions (e.g. CVD, Diabetes, Chronic Kidney Disease). This is particularly vital in high prevalence areas like Lambeth and other metropolitan areas. In order to increase the ability of GPs to manage their diagnosed HIV positive patient cohorts, a two-pronged approach is essential: first, to promote the benefits and counter the barriers that patients with HIV face (or presume they will face) in primary care, and to address the educational needs of primary care staff (see 3b above).

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Memorandum by Public Health, NHS Lambeth and Sexual Health Commissioning, LSL Alliance (HAUK 9) 5. Cost a. Have cost considerations been satisfactorily balanced with public health imperatives in HIV? b. Is research funding correctly prioritised? Increasing incidence and prevalence of HIV is a major financial risk for the NHS, with the costs of providing HIV treatment and care to an increasing cohort of HIV patients in excess of £250 million annually across London. This total will continue to rise and at an annual rate of 6% in the boroughs of Lambeth, Southwark and Lewisham which have the highest prevalence rates in the UK. Late diagnosis is an additional concern where the associated costs are up to 15 times the costs of an earlier diagnosis, and there is a high rate of death within the first year of treatment. There is a need for review of prevention and treatment policies in light of the current context. The additional and unseen costs that exist alongside HIV treatment are the care costs for long term co-morbidities (social care, workplace absence, and the cost of benefits that are not included in standard ‘treatment and care’ costings). The majority of costs across the treatment and prevention pathway are borne solely by PCTs, with local authorities’ contribution to care and support severely reducing, and in many cases ending, with the withdrawal of Aids Support Grant (ASG) contributions. Prompt diagnosis and effective treatment can reduce (almost halt) onward transmission of HIV in an individual. Testing guidelines to reduce undiagnosed HIV and prevent onward transmission (and therefore reduce cost) should form part of any future HIV prevention strategy. If all patients diagnosed HIV positive in 2008 had been diagnosed earlier and prevented from transmitting HIV to one additional person (through effective treatment) then the annual saving would be in excess of £50 million (HPA). The current split between HIV treatment and care and HIV prevention and care and support is not helpful in planning integrated pathways of care based on outcome frameworks. More research is required to establish diverse and community based models of care appropriate to HIV as a long term condition and individual client need where viable. A one-size-fits-all model to HIV treatment and care is not appropriate to the diversity of need and is not cost effective for developing and existing health organisations. The cost statistics outlined above make the case that further investments in research and in the delivery of evidence-based interventions to prevent new HIV infections and to manage wider care needs of people living with HIV is needed. Further research into health service provision for people living with HIV as a long-term condition is also necessary. 6. Stigma a. What impact does stigmatisation of those with HIV have on those infected, and on addressing HIV as a public health problem? An abundance of literature and research sites stigma as a barrier to accessing HIV testing, treatment care and support. Stigma and fear of consequent judgement and discrimination can also be a barrier to accessing wider sexual health services and HIV prevention interventions such as condoms. It is well documented that some people, particularly women, feel unable to negotiate condom use in stable and casual sexual relationships for fear of being considered promiscuous or rejected by their sexual partners. The same applies to HIV disclosure. Some 99

Memorandum by Public Health, NHS Lambeth and Sexual Health Commissioning, LSL Alliance (HAUK 9) aspects of stigma come from the individual’s internalised and perceived views; some is based on actual experiences of stigma and discrimination or expectations of stigma due to cultural, societal or religious norms that are key to some individual and community values. b. Where are problems of stigmatisation most acute? The implementation of the national HIV testing guidelines within all the settings recommended will contribute to render HIV testing as “routine” particularly primary care, and should improve the uptake of testing, contributing to reducing undiagnosed infection and therefore transmission. However, the growing UK evidence base on expanding HIV testing in broader health care settings suggests that a significant barrier to wider HIV testing are the attitudes towards HIV and sex of non-specialist healthcare professionals. c. What measures are currently taken to tackle HIV stigmatisation? What more should be done? As HIV testing in the UK has been historically largely confined to GUM/reproductive sexual health settings, workforce development and education (about HIV and HIV testing) alongside local campaigns aimed at non-specialist healthcare professionals should be prioritised. National and local strategies to de-stigmatise and increase HIV testing on the part of the public (particularly MSM and Black Africans) are needed, but will only succeed if frontline health providers are trained and educated about the reality of HIV today. Education and training to boost awareness of HIV on the part of health professionals will not only reduce stigmatisation of the virus, but also improve patient care, enabling GPs and other healthcare providers better to serve their HIV positive patients (e.g. avoiding prescription of drugs which interact with ART, monitoring long-term conditions such as Cardio-Vascular Disease and promoting the uptake of seasonal flu vaccines). 15 February 2011

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Memorandum by Ruth Hutt, Consultant in Public Health, NHS Lewisham (HAUK 31)

Memorandum by Ruth Hutt, Consultant in Public Health, NHS Lewisham (HAUK 31) 1. Context 1.1 Lewisham PCT has a high prevalence of HIV infection of 7 per 1,000 (2009). Most newly diagnosed HIV infection in Lewisham is heterosexually acquired, and late diagnosis is more common in this group. 1.2 Lewisham PCT received Department of Health funding to pilot opt out HIV testing for new patients registering with GP practices in line with the 2008 BHIVA testing guidance. After 9 months of implementation between January and September 2010 over 4,342 patients were offered an HIV test as part of the new patient check, of which 2,713 accepted. Nineteen patients were HIV positive. The pilot is continuing with the support of Gilead funding across Lambeth, Southwark and Lewisham. 2. Monitoring a. How robust is the current system for monitoring the number of people with HIV in the United Kingdom? 2.1 The UK has good systems in place for providing upto date information on people with HIV infection across the UK. A number of different sources contribute to this information and the Health Protection Agency (HPA) provides regular reports which help support commissioning and service developments in relation to HIV care. 2.2 Estimates of undiagnosed HIV infection are largely based on anonymised testing in GUM settings. These estimates do not allow for the fact that many (particularly heterosexual men) may not use these services and therefore may underestimate prevalence where the epidemic is largely Black African heterosexually transmitted. SOPHID does not account for people that choose not to engage with specialist services. b. Will the proposed public health reforms impact on this system? 2.3 Changes to the HPA may put at risk some of the work currently done to compile a complete and comprehensive overview of HIV epidemiology. This work should be safe guarded in new organisational structures. 2.4 There is a clear need for some GP engagement around HIV in light of an ageing cohort of patients whose needs have changed dramatically over the last two decades. Service configurations do not reflect these changes at present. If more care is provided by primary care in the future, this would potentially impact on the ability to collect data on HIV positive patients accessing care as current systems in primary care would not allow for this level of data collection.

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Memorandum by Ruth Hutt, Consultant in Public Health, NHS Lewisham (HAUK 31) c. Could anything be done to improve monitoring? 2.5 Linkage to laboratory testing data may give an overview of testing activity. A minimum data set for labs for HIV related testing could be established which would enable the epidemiological information to be collated. A similar system is being proposed for Chlamydia screening data. In Lewisham our local experience of HIV testing in primary care has been that a quarter of patients may not engage with specialist services. These patients would not appear on SOPHID and therefore are not counted in official prevalence estimates. 2.6 There should be an imperative on specialist service to routinely communicate with GPs about HIV care their patients receive. As commissioners GPs need to understand their local population needs and the current lack of communication between HIV services and primary care means that GPs are not necessarily aware of the extent of HIV infection in their own registered populations. This makes their commissioning role very difficult. With better disclosure of HIV infection in primary care, in the future estimates of HIV prevalence could be made using primary care data as is currently the case for other long term conditions. 2.7 The current (Read) codes used in primary care are inadequate for recording HIV testing in this setting, particularly in relation to point of care testing. New Read codes should be developed for HIV infection and point of care testing which enable primary care to get reliable data for their local populations on the number of tests performed and local disease prevalence. 2.8 Some HIV services still do not hold electronic patient records (EPR). Electronic patient records should be a minimum standard for all HIV services, so patient records can be searched for the purposes of audit or patient recall (for example following a change in treatment guidelines or following clinical incidents) without a manual search of paper notes. Anonymised data from EPR could be used to complement existing data sources. d. What groups in particular are at risk from HIV? 2.9 Men who have sex with men and Black Africans are currently at highest risk of HIV infection. However, there are other groups which are emerging as higher risk groups in including Eastern Europeans and Black Caribbeans. Currently there is very little HIV prevention activity focused on these groups. 3. Prevention a. Is Government policy sufficiently focussed on HIV prevention? 3.1 HIV testing should be seen as a key component of HIV prevention. Diagnosing HIV infection and linking patients into treatment can dramatically reduce transmission of infection. Diagnosis of HIV itself has a big impact on risk behaviour. 3.2. The link between testing as part of HIV prevention is not currently strong enough. 3.3 Local experience of extending HIV testing into community sexual health (family planning) settings has also highlighted that the intervention of the HIV test itself to be a good opportunity to reinforce safe sex messages following a negative result. 102

Memorandum by Ruth Hutt, Consultant in Public Health, NHS Lewisham (HAUK 31)

b. Have the right groups been targeted in recent prevention campaigns? c. To what extent have prevention initiatives targeted at injecting drug users been successful? d. How could prevention initiatives be better delivered and evaluated? 4. Testing a. Are current testing policies adequate across the country? 4.1 There is considerable variation in the implementation of the 2008 BHIVA testing guidance across the country. Lewisham is an area of high HIV prevalence however testing activity in relation to the BHIVA guidance remains low. In Lewisham we have had Department of Health funding to successfully implement HIV testing to newly registering patients in primary care. However with conflicting financial priorities locally it will be challenging to secure the funding that will enable us to continue testing and roll it out to the remaining 30 practices. During the first 9 months of implementation 19 new infections were diagnosed. None of these patients presented symptomatically and these infections are unlikely to have been detected without the screening offered at the new patient check. 4.2 Healthcare workers are currently tested for Hepatitis B but not HIV in many healthcare organisations. HIV testing of healthcare workers should be standard practice given the vast amount of public money spent on patient recall exercises for patients exposed to HIV positive healthcare workers (despite the low risk of transmission). Many clinicians are still under the impression they are required to ‘counsel’ a patient prior to an HIV test. If more health professionals had an HIV test they would be better informed about HIV infection. 4.3 Healthcare workers (outside of specialist HIV services) themselves are a considerable barrier to HIV testing. The way in which a test is offered (normalised versus exceptionalised), the way in which patients are required to consent to testing (by being asked to ‘sign’ something, book a special clinic appointment or have a pretest discussion) all continue to contribute to the stigma of having an HIV test and of HIV infection. b. What can be done to increase take-up rates? 4.4 Universal ‘opt out’ testing for antenatal screening has been hugely successful in increasing HIV testing in pregnant women. A similar approach should be adopted in other care settings in line with the BHIVA guidance. 4.5 Experience from the primary care testing pilots funded by the DH has demonstrated that HIV testing is acceptable to patients and that staff are often the biggest barrier to testing. 4.6 The use of point of care testing can increase uptake of an HIV test by ensuring results are available immediately and patients aren’t put off by requiring a blood test. It also makes results management easier as patients do not have to return for a second appointment or telephone in for results. 4.7 Some patients wrongly assume they have been tested for HIV when they have 103

Memorandum by Ruth Hutt, Consultant in Public Health, NHS Lewisham (HAUK 31) had blood tests for other reasons, potentially giving them the mistaken belief that they do not have HIV. 5. Treatment a. How can the NHS best commission and deliver HIV treatment? 5.1 HIV treatment needs to be commissioned over large population areas, centred in specialist services but with satellite services or networked services locally. There needs to be far more engagement with GPs to meet the ‘non’ HIV needs of patients. 5.2 While GUM services have been the home of HIV services since their inception there is perhaps an opportunity to consider them outside of sexual health context in an attempt to de-stigmatise HIV infection. As GUM services have never communicated with primary care about patient care it is not considered standard practice as it would be in any other area of clinical care. This is a barrier to safe patient care. The GMC guidance on sharing information states: • • •

•

Sharing information with other healthcare professionals is important for safe and effective patient care. When you refer a patient, you should provide all relevant information about the patient, including their medical history and current condition. If you provide treatment or advice for a patient, but are not the patient's general practitioner, you should tell the general practitioner the results of the investigations, the treatment provided and any other information necessary for the continuing care of the patient, unless the patient objects. If a patient has not been referred to you by a general practitioner, you should ask for the patient's consent to inform their general practitioner before starting treatment, except in emergencies or when it is impractical to do so. If you do not inform the patient's general practitioner, you will be responsible for providing or arranging all necessary after-care. 5.3 This guidance should be implemented in HIV care in the same manner as it is for all other specialties. This is particularly important given the increasing numbers of HIV positive patients being diagnosed in primary care.

b. What impact might the proposed new commissioning reforms have on HIV treatment? c. In what setting can treatment most effectively be delivered? 5.4 HIV services should be looking to develop community treatment models and shared care arrangements with primary care to manage the cohort of ageing HIV positive patients. A stepped approach to care should be encouraged that will require HIV specialists to work in better partnership with primary care. The current lack of coordination of care by a GP puts patients at risk. 6. Cost a. Have cost considerations been satisfactorily balanced with public health imperatives in HIV: i. prevention policy; and ii. treatment policy? b. Is research funding correctly prioritised? 104

Memorandum by Ruth Hutt, Consultant in Public Health, NHS Lewisham (HAUK 31) 7. Stigma a. What impact does stigmatisation of those with HIV have on those infected, and on addressing HIV as a public health problem? 7.1 Stigma regarding HIV infection has an impact on how prepared people are to disclose their HIV status, both to other healthcare professionals, family and work. Stigma is also a barrier to HIV testing and perpetuated by healthcare professionals making judgements about an individual’s risk. 7.2 While confidentiality is clearly very important within health services, the idea that HIV services are MORE confidential than other healthcare services is not helpful in de-stigmatising HIV infection. The more people feel able to disclose their HIV status and talk about it openly without adverse reactions from healthcare workers the greater the impact will be on de-stigmatising HIV infection. 7.3 Within the wider population and even amongst some healthcare professionals there is still no clear message that HIV is now a treatable condition and that with treatment the risk of transmission of infection can be reduced to almost zero. 7.4 For children and adolescents growing up with HIV the stigma of HIV infection presents huge hurdles as they become sexually active and try to manage their condition in a responsible way. b. Where are problems of stigmatisation most acute? 7.5 Many health care professionals lack up to date knowledge of HIV infection. Part of the stigma of HIV is perpetuated by health care professionals and the collusion between HIV specialists and patients that other parts of the NHS will not respect their right to confidentiality. Because patients have been told they don’t need to inform their GP or other healthcare workers of their HIV status there is an underlying assumption that if they divulged this information it would in some way change their treatment. c. What measurers are currently taken to tackle HIV stigmatisation? What more should be done? 7.6 Given that the highest burden of HIV is felt by those who may already be stigmatised by the ethnicity and sexuality, consideration should be given to moving HIV treatment services out of GUM/sexual health clinic settings and into mainstream general medicine. This would begin to bring HIV treatment and care in line with other conditions such other immune disorders, hepatitis which do not experience the same levels of stigma. 7.7 Normalisation of HIV testing so that HIV is discussed openly in the context of wider health issues rather than just the context of sexual health will help destigmatise HIV. Local experience from the HIV testing pilot has shown that when offered an HIV test patients are willing to disclose their HIV (positive) status. 17 February 2011

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Memorandum by the Rehabilitation and HIV Association (HAUK 40)

Memorandum by the Rehabilitation and HIV Association (HAUK 40) This evidence is submitted on behalf of the Rehabilitation and HIV Association, an association of Occupational Therapists, Physiotherapists and Speech and Language Therapists who specialise in working with people living with HIV in a range of settings. 1.0 Treatment 1.1 Recommendation 1: That rehabilitation should be included alongside prevention, testing, treatment and support as a cornerstone of HIV care. That HIV clinical services should have a dedicated multi-disciplinary rehabilitation team. That rehabilitation services outside of HIV clinical services are accessible and responsive to the needs of individuals living with HIV. 1.2

As well documented, the number of people living with HIV in the United Kingdom has increased year on year since it was identified in 1981 339 . Whilst advances in the medical management of HIV have lead to greatly increased life expectancy, 340 living longer term with HIV has lead to increased rates of both HIV related opportunistic illnesses 341 and other related co-morbidities. 342 Several studies have shown that this translates in to a significant proportion of people living with HIV living with impairments, activity limitations and participation restrictions 343 344 .

1.3

Our members, many of whom work within the larger HIV clinics in both inpatient and outpatient settings, have continued to see increasing numbers of people presenting with impairments and disabilities related to living with HIV. These include physical, sensory, cognitive, social and psychological impairments and disabilities. In our own clinical practice, and through our work educating and supporting rehabilitation professionals working in a range of settings, we are aware of many individuals living with HIV accessing rehabilitation services throughout their HIV journey including within acute inpatients settings, community rehabilitation services, social services and work rehabilitation services.

1.4

Rehabilitation professionals aim to ameliorate impairments and disabilities through a range of interventions ranging from direct hands-on treatments, exercise based interventions, functional practice, giving of advice and information, environmental adaptations and recommendations for support services. The effect of these

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Health Protection Agency (2010). HIV in the United Kingdom 2010 Report. Health Protection Agency: London. 340 van Sighem A et al. (2010) ATHENA national observational cohort study. Life expectancy of recently diagnosed asymptomatic HIV-infected patients approaches that of uninfected individuals. AIDS. 2010 Jun 19;24(10):1527-35. 341 Buchacza K et al. (2010) AIDS-defining opportunistic illnesses in US patients, 1994–2007: a cohort study. AIDS 24:1549–1559. 342 Neuhaus J et al. (2010) Risk of all-cause mortality associated with nonfatal AIDS and serious non-AIDS events among adults infected with HIV. AIDS, 24(5):697-706. 343 Rusch, M, Nixon, S, Schilder, A, Braitstein, P, Chan, K, and Hogg RS. (2004). Impairments, activity limitations and participation restrictions: prevalence and associations among persons living with HIV/AIDS in British Columbia. Health and Quality of Life Outcomes 2004, 2:46. 344 Van As, M, Myezwa, H, Stewart, A, Maleka, D, Musenge, E. (2009). The International Classification of Function Disability and Health (ICF) in adults visiting the HIV outpatient clinic at a regional hospital in Johannesburg, South Africa. AIDS Care 2009 Jan; 21(1): 50-8.

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Memorandum by the Rehabilitation and HIV Association (HAUK 40) interventions is more far reaching than improving the quality of life of the individual living with HIV; successful rehabilitation also aims to reduce hospital admission rates, reduce length of stay in acute care, reduce reliance on medical and social services, and supports people to enter and maintain paid employment. Many rehabilitation interventions also have a public health benefits, for example advising on life style changes in diet, activity and stress management to reduce the risk of cardiovascular disease. All of these interventions have the potential for reducing the financial burden on the state. 1.5

Given the change in profile of people living with HIV in the UK, we would recommend that future guidelines and commissioning strategies provide for rehabilitation for people living with HIV. This is also in line with international recommendations from the World Health Organisation, which states that governments should “provide comprehensive HIV testing, treatment, care and support services which...include early intervention and referral to rehabilitation and support services for people experiencing activity limitations or participation restrictions as a result of their HIV infection” 345 .

1.6

We would recommend that specialist HIV clinics continue to have access to rehabilitation professionals with specialist HIV knowledge. Clinics without access to rehabilitation professionals with specialist HIV knowledge should be supported to develop these services.

1.7

Evidence from other long term condition management strongly supports that multidisciplinary team management (MDT) is highly effective.346 Our members report that MDT working is also highly effective within HIV services. We recommend that HIV clinical services include MDT members such as specialist physiotherapy, occupational therapy and speech and language therapy.

1.8

We also recommend that provisions are made for training and support of rehabilitation professionals working in non HIV specialist settings (see below).

2.0 Stigma 2.1 Recommendation 2: That rehabilitation services across the UK are provided with education and support to provide services that are sensitive to the experience of stigma that many people living with HIV report. 2.2

The experience of our members suggests that generic services such as community rehabilitation teams and social services teams have over time become more appropriate in their response to referrals of people living with HIV. Our members have in the past encountered services who had incorrectly assumed an individual living with HIV did not require rehabilitation because they had a deteriorating, life limiting illness. Conversely, members have also experienced services who had incorrectly assumed that people receiving effective antiretroviral treatment did not require services even though they presented with impairments or disabilities, often ignoring

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World Health Organisation. Disability and HIV Policy Brief. WHO April 2009. Prvu Bettger, JA, Stineman MG (2007) Effectiveness of multidisciplinary rehabilitation services in post-acute care: state-of-the-science. A review. Archives of physical medicine and rehabilitation. 88(11): 1526-1534.

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Memorandum by the Rehabilitation and HIV Association (HAUK 40) the episodic nature of HIV. 347 Our members’ experiences suggest that there is a variance in the quality of managing stigma related issues by rehabilitation services; in areas with high prevalence of HIV such as inner city areas, services tend to have more sensitivity to the stigma and discrimination experienced by people living with HIV than those living in areas with lower prevalence. Our members are concerned that as the trend towards people living with HIV living primarily in inner cities that instances stigma may increase and this supports the need that education needs to be wide reaching. 2.3

Our members report more recent instances where generic rehabilitation teams have been reluctant to accept referrals or where there were concerns over occupational transmission of HIV that were based on outdated, incorrect information, as well as instances where individuals living with HIV have reported they felt they were treated inadequately or in a discriminatory manor by non-specialist services because of their HIV diagnosis.

2.4

We recommend that rehabilitation professionals working in all areas are given the opportunity to access HIV training, and that HIV education is included in the undergraduate training of rehabilitation professionals. This is also recommended by the World Health Organisation 348 .

3.0 Research 3.1 Recommendation 3: That support and resources be available to undertake quality research into the benefits of rehabilitation for those living with HIV. 3.2

As a relatively new and now long term condition the evidence for the effectiveness of rehabilitative therapy and input is often borrowed from other fields with over lapping issues, such as neurological rehabilitation. Research into the benefits of exercise and HIV, summarised in two Cochrane Library reviews, show an encouraging example of research which as informed therapeutic intervention specifically targeted for HIV positive individuals 349, 350.

3.3

However research into physical and cognitive sequelae of HIV and rehabilitation in the context of HIV are often lacking, with the bulk of research funding and resources going to prevention and drug therapies. Coupled with the very small number of rehabilitation professionals working directly in HIV, and the career structures for rehabilitation professional less geared towards research than their medical counterparts, creating a strong robust evidence base is extremely challenging. This could propose a particular difficulty with the upcoming changes to commissioning for NHS services, as little understood about the vital services for people living with HIV.

347

O’Brien, K, Davis, AM, Strike C, Young N, Bayoumim AM. Putting episodic disability into context: factors that influence disability experienced by adults living with HIV. Journal of the International AIDS Society. November 2009, 12:30. 348 World Health Organisation. Disability and HIV Policy Brief. WHO April 2009. 349 O'Brien, K, Tynan, AM, Nixon, S and Glazier, RH.(2008) Effects of Progressive Resistive Exercise in Adults Living with HIV/AIDS: Systematic Review and Meta-Analysis of Randomized Trials. AIDS Care, 2008 20(6): 631653. 350 O'Brien K, Nixon S, Tynan AM, Glazier R. (2010)Aerobic exercise interventions for adults living with HIV/AIDS. Cochrane Database Syst Rev. 2010 Aug 4;(8):CD001796.

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Memorandum by the Rehabilitation and HIV Association (HAUK 40) 3.4

There is a growing body of evidence suggesting that amongst older people living with HIV, that there is a growing need for rehabilitation and therapy support as well as complex issues relating to barriers to accessing appropriate care targeted at this group. 351, 352

3.5

To fully understand and investigate the positive outcomes seen in individuals receiving rehabilitation interventions from our members, we recommend that support and resources be given to boost research activities in the areas of prevalence of HIV related disabilities and impairments, the experiences of those with HIV accessing care and support, and specific therapeutic interventions which may benefit those living with HIV.

February 2011

351

http://www.tht.org.uk/binarylibrary/peoplesexperienceofhiv/50-plus-final-report.pdf. Accessed online 18/02/2011 10:20. 352 http://www.tht.org.uk/binarylibrary/peoplesexperienceofhiv/50-plus-literature-review.pdf Accessed online 18/02/2011 10:30.

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Memorandum by Royal College of GPs Sex, Drugs and HIV Group (HAUK 54)

Memorandum by Royal College of GPs Sex, Drugs and HIV Group (HAUK 54) Monitoring In general we believe that current systems for monitoring the epidemiology of HIV in the United Kingdom are comprehensive, robust and useful. The Health Protection Agency produces data on HIV prevalence and diagnosis including numbers of people with a late diagnosis. The information is easily accessible, well presented and relevant to the primary care clinicians that our group represents. The information has been important for the recognition that testing in primary care will be a vital route to reach important at-risk groups. In particular testing of people presenting with conditions that can be related to HIV (such as tuberculosis, hepatitis B and C, lymphoma, shingles, STIs) and testing for Black Africans and men who have sex with men. The HPA also produces data showing areas of the UK with high prevalence of HIV such as London, Manchester, and Brighton where HIV screening of newly registered patients in primary care could be beneficial. We believe that ensuring the continuing quality of this data should be a priority when considering the impact of the proposed public health reforms. Prevention There is always scope for increased focus on prevention and the use of new and innovative prevention techniques. We believe that prevention initiatives targeted at injecting drug users have been a particular success story evidenced by the low HIV incidence and prevalence in this group. It is our opinion that harm reduction models of care have been key to the success of prevention in this group. We feel that it is vital that an increased focus on recovery for substance users is not conflated with abstinence models with enforced reductions from substitute prescriptions. This could lead to a resurgence of unsafe drug use, including injecting and sharing, with a potential for a significant rise in blood borne virus infections including HIV. By increasing the testing for HIV, more people will be aware of their HIV status. Research shows that when people are aware they are HIV positive, they take more precautions in their sexual activity and therefore reduce the risk of transmission. Also, when people are treated with anti retrovirals, their infectivity is reduced. Therefore increasing testing for HIV can be seen as a preventative measure in its own right. Testing Testing across the UK remains sub-optimal, reflected in the levels of late diagnosis of HIV infection. Historical precedents have exceptionalised HIV testing deterring both professionals from testing and the public from getting tested. Concerns around the amount of counseling required before testing, confidentiality of testing and the impact on ability to obtain life assurance have had a particular deterrent on testing in primary care. It is our belief that none of these concerns are now valid and that more requires to be done to tackle myths and misperceptions in this area. 110

Memorandum by Royal College of GPs Sex, Drugs and HIV Group (HAUK 54)

The lack of involvement of primary care in the management of HIV patients, whereby GPs may not be aware of the diagnosis or receive any communication from treatment centres about registered patients, also has an effect on HIV testing in general practice. Communication from specialist colleagues is an important informal source of education for GPs and raises awareness of conditions, their presentations and management. An increased normalisation of GP involvement in the care of HIV patients, which could range from simply regular communication through to formal shared care arrangements, would help to promote HIV testing for patients at risk. Increasingly, treatment units recognise the importance of this involvement and encourage their patients to allow this. We recognise that a small number of patients may not want their GP informed for particular personal reasons and would respect this. Other initiatives could also improve the involvement of GPs in HIV testing and care. At present there is no recognition of the importance of the condition in the UK GP contract. We believe that the QOF mechanism within the contract could be used to promote this involvement. We are working with the British HIV Association on a submission to NICE to amend the QOF framework to include HIV testing and care. Previous submissions have not been successful. The Sex, Drug and HIV Group of the RCGP have developed a guide for GPs to test for HIV in primary care “A Six Step Guide to HIV testing in Primary Care” which is being developed for use with the common GP computer systems to simplify and demystify testing. HIV testing is also part of the curriculum of the Introductory Certificate in Sexual Health run by the RCGP and aimed at GPs. There are e-learning computer based training courses developed by the RCGP giving further training in testing and basic knowledge of HIV. Making GPs more confident in their HIV knowledge will improve testing rates in practice. Treatment As detailed above, we believe that there are important educational benefits to be gained through the routine involvement of GPs in the management of their HIV patients. There are also important benefits for individual patients. High quality primary care is a key stone of the British healthcare system and, unless patients are registered with a GP who is aware of their medical history they are denied this. With an aging population of HIV patients many of their health issues are the chronic illnesses, such as hypertension and cardiovascular disease that are now managed for most people in primary care. An HIV specialist does not necessarily have the expertise or time to satisfactorily manage these conditions and may end up using expensive secondary care referrals as an alternative to good primary care. Primary care has an excellent track record in chronic disease management and monitoring. The increased life expectancy of HIV patients means ever increasing numbers of people attending treatment clinics which lead capacity issues for them. At present we do not support any shift to antiretroviral prescribing in primary care but we do support adequately funded shared care models where there are clear lines of responsibility for the management of patients. GPs should be providing all the primary care needs for these patients. 111

Memorandum by Royal College of GPs Sex, Drugs and HIV Group (HAUK 54) Stigma This remains an issue for people affected by HIV. The lack of involvement of primary care in diagnosis and care of people with HIV means that there is a lack of knowledge amongst professionals that could result in behaviour that is stigmatizing. We support education and training for primary care professionals around the issue stigmatisation to go along with moves to increase the involvement of primary care. If HIV testing becomes a routine, every day part of the discussion we have with our patients, stigma will be decreased and both doctors and patients will feel more comfortable addressing HIV testing and management. February 2011

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Memorandum by the Royal College of Nursing (HAUK 35)

Memorandum by the Royal College of Nursing (HAUK 35) Introduction With a membership of over 410,000 registered nurses, midwives, health visitors, nursing students, health care assistants and nurse cadets, the Royal College of Nursing (RCN) is the voice of nursing across the UK and the largest professional union of nursing staff in the world. RCN members work in a variety of hospital and community settings in the NHS and the independent sector. The RCN promotes patient and nursing interests on a wide range of issues by working closely with the Government, the UK parliaments and other national and European political institutions, trade unions, professional bodies and voluntary organisations. The RCN welcomes this opportunity to submit evidence to the House of Lords Select Committee inquiry into HIV and AIDS in the UK. Executive Summary • The RCN maintains that there should be sustained and structured nursing involvement during the design, development and delivery of any reforms to healthcare services and healthcare commissioning. This must include designated nursing posts on the NHS Commissioning Board, GP Consortia and Local Health Boards, as nursing leaders play a pivotal role in helping to close the gaps between hospital and community and health and social care. This ensures the delivery of integrated and seamless care to patients. • Reforms should be designed to address health inequalities, which will need monitoring and addressing to ensure that all health needs are met. This is particularly important in relation to socio-economic disadvantage and hard to reach groups, including people who have not tested for HIV before and African communities where the impact of stigma is higher. The commissioning process needs to have an overall view of the population, which will require joint working to take place across agencies. • The RCN believes that it is important that national political accountability is not lost in the new system. • The RCN is concerned that there may be the possibility of fragmentation of access to sexual health and HIV services following the reforms. The renewed 2011 strategy for sexual health and HIV for England is likely to be commissioned by the National Commissioning Board rather than from Public Health England. However prevention, behaviour change in all aspects of sexual health, and open access sexual health services will become a Local Authority responsibility. 353 The RCN recommends that all services relevant to sexual health should be commissioned by the same organisation. This would include prevention initiatives, sexual health services, HIV treatment, family planning, termination of pregnancy and screening services. • The RCN calls for the commissioning proposals outlined in the Public Health White Paper to be amended to reflect this coherent approach. It is important that joint working arrangements will be in place to work across different commissioning streams and delivery routes to avoid gaps in the system. 353

Department of Health (2010) Health Lives, Healthy People (p. 58)

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Memorandum by the Royal College of Nursing (HAUK 35)

• The proposed renewed 2011 strategy for sexual health and HIV for England must look to “invest to save” models of evidence based preventative care and it is important that progress made in recent years is sustained and improved upon. • Self-care models should be developed and supported by well resourced nurse-led clinics in community settings. This must be delivered by staff with appropriate competencies which are maintained with regular Continuing Professional Development (CPD) opportunities, working with multi-disciplinary care plans with clear escalation pathways to acute settings where necessary. • The proposed renewed 2011 strategy for sexual health and HIV for England should focus on the development and normalisation of HIV self-care and public campaigns to increase knowledge and reduce stigma around HIV and AIDS. Inquiry questions 1.

Monitoring

How robust is the current system for monitoring the number of people with HIV in the United Kingdom? 1.1 The robustness of the current system is subject to the adherence of specialist HIV centres to British HIV Association (BHIVA) and The Children's HIV Association of the UK and Ireland (CHIVA) standards and guidelines with appropriate reporting to the Health Protection Agency (HPA) or its replacement. Centres in high grouping areas (London, Brighton, Manchester) have high throughput, which maintains the skills and experience of staff. However smaller centres or centres in areas of low prevalence tend to have a lower throughput so links including those with centres of excellence need to be developed and maintained. Vital to the network of treatment centres are nurse-led clinics with nurse consultants and clinical nurse specialists. Will the proposed public health reforms impact on this system? 1.2 The RCN is concerned that the proposed reforms could lead to the possibility of fragmentation of access to sexual health and HIV services. The planned 2011 strategy for sexual health and HIV for England is likely to be commissioned by the National Commissioning Board rather than from the new Public Health England. However, prevention, behaviour change in all aspects of sexual health, and open access sexual health services will become a Local Authority responsibility. The RCN recommends that all services relevant to sexual health should be commissioned by the same organisation. This would include prevention initiatives, sexual health services, HIV treatment, family planning, termination of pregnancy and screening services. 1.3 The commissioning proposals outlined in the Public Health White Paper should therefore be amended to reflect this coherent approach. Joint working arrangements should be in place to work across different commissioning streams and delivery routes to avoid gaps in the system.

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Memorandum by the Royal College of Nursing (HAUK 35) Could anything be done to improve monitoring? 1.4

The RCN endorses adherence to BHIVA and CHIVA guidelines in all settings.

What groups in particular are at risk from HIV? 1.5 At risk groups include: gay men; men who have sex with men (MSM) (including men who are also in heterosexual relationships); African communities; and adults who have multiple sex partners (including sex tourists). 1.6 In relation to risk, approximately 25 per cent of people living with HIV are undiagnosed 354 and are not aware that they are carrying the virus. This increases the risk to their sexual partners and also to themselves as late diagnosis and treatment leads to poorer health outcomes. 2.

Prevention

Is Government policy sufficiently focused on HIV prevention? 2.1 The 2011 strategy for sexual health and HIV for England must look to “invest to save” models of evidence based preventative care. It is also important that progress made in recent years is sustained and improved upon. HIV is an area that would directly benefit from the Wanless principle to “invest in reducing demand by enhancing the promotion of good health and disease prevention” 355 . This also reflects the Public Health White Paper focus on health prevention. 2.2 The 2011 strategy for sexual health and HIV for England must also focus on earlier detection targeted at high risk groups to complement prevention initiatives. Have the right groups been targeted in recent prevention campaigns? 2.3 The RCN notes that some past campaigns have been poorly targeted and recommends more targeted prevention campaigns focussing on at risk groups (gay men/MSM, African communities). Additional campaigns aimed at the general public should focus on increasing knowledge and reducing stigma. For example, lessons could be learnt from the success of antenatal screening programmes. To what extent have prevention initiatives targeted at injecting drug users been successful? 2.4 Needle exchange projects, including testing, are working well and this group is a well defined and understood population. The RCN recommends that needle exchange programmes should be extended into criminal justice and prison settings. 356

354

Health protection Agency (2010) HIV in the United Kingdom: 2010 Report Health Protection Report 4 (47) 26 November 2010 355 Securing Our Future Health: Taking a Long-Term View, Derek Wanless, 2002 356

Lines, R.; Jürgens, R.; Betteridge, G.; Stöver, H.; Laticevschi, D.; Nelles, J. (2004) Prison needle exchange: lessons from a comprehensive review of international evidence and experience. Canada. Canadian HIV/AIDS Legal Network.

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Memorandum by the Royal College of Nursing (HAUK 35) How could prevention initiatives be better delivered and evaluated? 2.5 Under a local commissioning structure, it is essential that nurses working in sexual health, HIV and health promotion areas have the knowledge, skills and competence to agreed standards 357 . This will help to ensure the delivery of effective behavioural changing interventions. 2.6 The cost benefit in the development of nurse-led community models of care which reduce hospital admissions can be complemented by qualitative evidence showing the benefit to patients of increasing responsibility for self-care and managing their conditions. 2.7 Prevention initiatives must be evidence based and the evaluation of initiatives should then be used to increase this evidence base. Prevention initiatives could be better evaluated if robust outcomes are set before initiatives are launched so that the initiatives could then be evaluated against delivery of these outcomes. 3.

Testing

Are current testing policies adequate across the country? 3.1 As referred to previously, approximately 25% of people living with HIV are undiagnosed and are not aware that they are carrying the virus. For this reason, more could be done to increase testing take-up rates. What can be done to increase take-up rates? 3.2 There is a need to increase the rates of early diagnosis by early testing of at risk groups. This could be done by improving the availability of testing in community settings and venues, which would increase take-up rates. The RCN notes the importance of identifying hard to reach groups and people who have not tested before and engaging with these groups and people to encourage them to test. The involvement of the voluntary sector and faith groups could be used to help with identifying, engaging with and encouraging people who have not tested before. 3.3 The RCN supports the legalisation and regulation of home testing to enable people who wish to test at home to do so in safety and with access to appropriate services if required. 3.4 The RCN notes the importance of the normalisation of routine testing and suggests targeted testing at point of entry to any healthcare system. Investing in and supporting nursing staff to deliver this programme of testing is important. Nursing staff includes: practice nurses; occupational health nurses; midwives; health visitors; A&E nurses (including routine testing for all those exhibiting symptom related A&E admissions); nurses in criminal justice services; and respiratory nurses. These practitioners need to have the knowledge, skills and competence to promote testing and to perform the test.

357

RCN Sexual Health competences http://www.rcn.org.uk/__data/assets/pdf_file/0007/78631/002469.pdf

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Memorandum by the Royal College of Nursing (HAUK 35) 4.

Treatment

How can the NHS best commission and deliver HIV treatment? 4.1 As referred to previously in the submission, the RCN has concerns regarding the impact of the proposed public health reforms on the commissioning on sexual health and HIV services. The RCN therefore recommends that joint working arrangements should be put in place to work across different commissioning streams and delivery routes to avoid gaps in the system. 4.2 NHS commissioning should include cost benefit modelling, including data to show the added value of the service commissioned. This should include opportunities for qualitative data to be collected which will demonstrate the benefit of supportive and sustained nurse/patient relationships. 4.3 The RCN notes that HIV treatment can learn from other long term conditions with promotion of self-care models. These self-care models should be supported by the commissioning of nurse-led community clinics for people living with HIV. These “invest to save” models confer the cost benefit of reduced hospital admissions. 4.4 Nurse led community clinics mean that if patients are well and stable they can be seen by a specialist nurse who can prescribe, undertake physical assessment and monitoring and see the patient in a setting that normalises HIV. These nurse specialists will have extensive knowledge of conditions and concurrent conditions. It will be important that these nurse specialists are resourced and have access to CPD so that care givers maintain their specialist knowledge of treatment and care plans. Care pathways to a medical consultant must be in place to escalate across if the patient requires a medical review. What impact might the proposed new commissioning reforms have on HIV treatment? 4.5 Please see previous answers, where the RCN has outlined its concerns regarding the new reforms. In what setting can treatment most effectively be delivered? 4.6 The RCN notes that national BHIVA and CHIVA guidelines must be followed in any treatment setting. In addition, the normalisation of HIV care is increased if care is delivered in community settings such as nurse-led community clinics. There is also a role for the development of new technology, including websites such as myhiv.org.uk, which empower patients to access services, manage their condition and access peer support. 5.

Cost

Have cost considerations been satisfactorily balanced with public health imperatives in HIV: (i) prevention policy; and (ii) treatment policy? 5.1 Prevention policy should be evidence based and evaluated. It should consider the cost implications of changes to public health budgets in the future.

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Memorandum by the Royal College of Nursing (HAUK 35) 5.2 There is a need for a stronger focus on the life time costs of diagnosis, treatment and care of a patient living with HIV. This data can then be compared to the costs of prevention campaigns so an accurate cost benefit model for prevention and behaviour change initiatives can be produced. Is research funding correctly prioritised? 5.3 The RCN recommends that qualitative research on patient experiences should be undertaken, which will demonstrate the benefit of supportive and sustained nurse/patient relationships. The RCN would also welcome further research into treatment options. 6.

Stigma

What impact does stigmatisation of those with HIV have on those infected, and on addressing HIV as a public health problem? 6.1 The RCN is concerned that a number of people living with HIV do not disclose their status to their GP. Stigma can affect the mental health of people living with HIV in relation to disclosure issues – who to tell, who not to tell and the ramifications of disclosure. 6.2 The RCN notes the role of healthcare professionals in normalising care of patients living with HIV by designing services in the same way as those for any long term condition, such as diabetes or chronic obstructive pulmonary disease. Where are problems of stigmatisation most acute? 6.3 The principle of “need to know” transmission of disclosure in education and employment settings is important. The RCN notes that disclosure to employers is covered by Disability and Discrimination Act (DDA) legislation but believes that employers may be unsure as to their responsibilities following disclosure. 6.4 There is an important intermediary role for occupational health nurses and school nurses, who can advise employment or education staff that a long term condition exists whilst restricting confidentiality as to the type of condition on a need to know basis. There is also a role for third sector organisations in undertaking the signposting role that occupational health nurse would play if patient is employed by a Small to Medium Employer (SME), which does not have occupational health facilities. 6.5 The RCN is concerned about the stigmatisation of healthcare workers who are themselves living with HIV and notes the importance of the availability of occupational health services to support staff. It is vital that confidentiality is maintained in workplace settings and recommends that employers consider HIV awareness programmes in the workplace. What measures are currently taken to tackle HIV stigmatisation? What more should be done? 6.6 General public awareness campaigns need to focus on reducing stigma and levels of fear and increase education and awareness across all age ranges.

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Memorandum by the Royal College of Nursing (HAUK 35) 6.7 There is an important role for nurses and Health Care Assistants (HCA) in having the knowledge to challenge beliefs or discriminatory behaviour. 358 The RCN recommends that training for public services staff includes the issues around HIV instead of focussing on the risks to staff. The education of healthcare staff in HIV issues, in pre and post registration education and training, and in the induction of HCAs is extremely important. The RCN notes the relatively short induction period for HCAs and the importance of getting antistigmatisation education into this induction package. February 2011

358

RCN Think Positive campaign (2007) http://www.rcn.org.uk/newsevents/campaigns/think_positive/news_stories/rcn_launches_campaign_to_raise_hi v_awareness

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Letter from Dr Paul Lister, Consultant HIV Physician, St George’s Healthcare Trust (HAUK 32)

Letter from Dr Paul Lister, Consultant HIV Physician, St George’s Healthcare Trust (HAUK 32) I am submitting this response on behalf of senior HIV clinicians and managers at St George’s Healthcare Trust. The Trust provides medical care to over 1300 HIV patients and is involved in extensive HIV testing initiatives. Monitoring a. How robust is the current system for monitoring the number of people with HIV in the United Kingdom? St Georges Healthcare NHS Trust adheres to HPA notification protocols on HIV diagnoses and deaths. The data is invaluable in mapping the changes in the epidemic enabling services to respond to national and local trends. St Georges Healthcare NHS Trust uses trends in local HIV prevalence based on HPA data to target education initiates to primary care professionals on HIV testing to reduce delayed diagnosis of HIV b. Will the proposed public health reforms impact on this system? There is a risk to good quality data on HIV epidemiology. The HPA’s central chelating and reporting of data will need to be re-housed in the new National Public Heath body. c. Could anything be done to improve monitoring? The HPA have easy to use online monitoring system for new diagnoses and deaths. The burden of undiagnosed HIV needs continuous monitoring through unliked seroprevaence monitoring systems d. What groups in particular are at risk from HIV? MSM were the biggest group of people diagnosed with HIV last year at St Georges Healthcare NHS Trust, which is a change from previous years where individuals from high prevalence areas being the biggest group. UK born individuals from marginalised and deprived communities pose an emergent new risk group in South London. Testing a. Are current testing policies adequate across the country? There is considerable room for improvement. There are many HIV testing pilot initiatives. An initiative in Wandsworth with primary care and secondary care physicians resulted in a 45% increase in new diagnoses to St Georges Healthcare NHS Trust between 2009 and 2010. St Georges Healthcare NHS Trust is currently involved with a number of additional initiatives on HIV testing at Accident and Emergency, primary care, termination of pregnancy and the colposcopy clinics. The GUM service at St Georges Healthcare NHS Trust has a partnership working relationship with the British Pregnancy Advisory service supporting HIV testing and STI screening initiatives in women seeking termination of pregnancy. Formal evaluation and publication of the effectiveness of primary care and hospital initiatives on HIV testing is required to inform this further. b. What can be done to increase take-up rates? Further work needs to be done to normalise HIV testing across primary and secondary care. GUM services have a major role in education of other local providers to enable implementation of more widespread HIV testing. The evidence base from initiatives need 120

Letter from Dr Paul Lister, Consultant HIV Physician, St George’s Healthcare Trust (HAUK 32) clear and widespread dissemination to relevant specialties. An area for priority is to encourage testing of male partners of pregnant women. Women who seroconvert in pregnancy after a negative test probably represent the greatest risk for vertical transmission now that we are so successful in preventing transmission with ART. Treatment a. How can the NHS best commission and deliver HIV treatment? The London Specialised Commissioning Group is an example of good practice where joint purchasing of antiretrovirals on behalf of 23 London providers has achieved an almost 25% saving on the antiretroviral budget. In addition the commissioners working with clinicians have provided guidance on how high cost drugs should be prescribed preventing spiralling costs for London. The specialist commissioners and clinicians at St Georges Healthcare NHS Trust link through a sexual health and HIV network (SWAGNET) to ensure even and equitable dissemination of information from commissioners and feedback from clinicians across a large sector. A collaborative commissioning arrangement linking through funded provider networks is a model of good practice. However tariffs should be the same for each trust. b. What impact might the proposed new commissioning reforms have on HIV treatment? The cost of a years worth of antiretroviral treatment is in the order of £7000 in London. Any disruption to collaborative commissioning arrangements is likely to result in a spiralling of costs. If specialised commissioning of HIV continues through a National body, sexual health and HIV networks would be key in ensuring success of communication and implementation of best practice models. c. In what setting can treatment most effectively be delivered? Through collaborative commissioning arrangements which link to sexual health networks. Currently St Georges Healthcare NHS Trust offers clinics based both at a hospital site and community setting ( Roehampton clinic. Primary care engagement of non-HIV related long term complications such as heart disease need to developed further. ). Routine HIV patient follow up intervals are increasing ( up to 6 monthly for stable well people) with options for emails/telephone appointments. A proportion of patients may be suitable for monitoring in the community but there may be a risk to quality of care and increasing costs from fragmentation of the service and these need to be carefully considered. Cost a. Have cost considerations been satisfactorily balanced with public health imperatives in HIV: Antiretroviral treatment is highly cost effective in terms of QUALYs – let alone the public health benefit of rendering infected individuals much less likely to transmit infection to others. There is increasing concern about the long term toxicity of many of the older drugs which will come off patent soon. It is imperative that we are not forced to use more toxic drugs to reduce short term costs – for instance long term dialysisand osteoporosis are expensive and rates will increase if we do not have flexibility to choose optimum regimens for our patients. (i) prevention policy; The drive to develop new tariffs for sexual health potentially put at risk complex work undertaken GUM services around HIV partner notification and testing of contacts including 121

Letter from Dr Paul Lister, Consultant HIV Physician, St George’s Healthcare Trust (HAUK 32) children. Testing and treatment of HIV positive contacts is a good model for the prevention of onward transmission. b. Is research funding correctly prioritised? There is concern about premature ageing in this cohort of patients impacting on cardiovascular, renal and CNS disease particularly. These long term complications should be priorities for research. Additional research into increasing identification of the undiagnosed in a cost-effective manner is needed Stigma a. What impact does stigmatisation of those with HIV have on those infected, and on addressing HIV as a public health problem? Stigma can stop people being tested, accessing services (in case someone sees them), taking medicines and telling family, friends and partners/potential partners. All lead to more spread and late diagnosis. b. Where are problems of stigmatisation most acute? Probably in communities in which homosexuality is heavily stigmatised African and Caribbean particularly. 18 February 2011

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Memorandum by the Scottish Government (HAUK 62)

Memorandum by the Scottish Government (HAUK 62) Monitoring a. How robust is the current system for monitoring the number of people with HIV in the United Kingdom? 1. Scotland has robust surveillance systems for monitoring HIV in Scotland, developed and maintained by Health Protection Scotland (HPS). (http://www.hps.scot.nhs.uk/bbvsti/surveillancesystems.aspx) 2. Health Protection Scotland runs a database of all known HIV infected persons in the country. Information held includes risk category, demographics and clinical data. b. Will the proposed public health reforms impact on this system? 3. The Public Health reforms are not applicable in Scotland. c. Could anything be done to improve monitoring? 4. As part of ongoing policy developments, Scottish Government is working with HPS and other key stakeholders to identify areas where HIV monitoring could be augmented and developed. 5. As part of the HIV Action Plan (http://www.scotland.gov.uk/Publications/2009/11/24105426/0) this has included; • A data review by NHS Health Scotland and Health Protection Scotland under ‘Action 6’. This will improve the quality of data on people living with HIV (PLWHIV) attending clinical services and data linkage with NHS Information Services Division (ISD) and the Health Protection Agency (HPA). In addition, a new card based one year non-attendee recall system for last known contact in clinical services will be piloted. • A key action to improve monitoring of HIV incidence and risk behaviours. d. What groups in particular are at risk from HIV? 6. In Scotland, those most at risk of new transmissions of HIV are men who have sex with men (MSM). 7. Those also at risk include those originating from areas of high prevalence, particularly African countries. There is anecdotal evidence of late presentation/diagnoses of HIV in the white Scottish population. 8. Current policy planning will support work to reduce late diagnoses in all populations and to increase awareness of HIV in all professionals (not only specialists) as well as the general public. Prevention a. Is Government policy sufficiently focused on HIV prevention? 9. HIV prevention is a key part of Scottish Government HIV policy. 123

Memorandum by the Scottish Government (HAUK 62) 10. In November 2009, the Scottish Government published the HIV Action Plan. The plan contains 14 actions, of which 10 include a prevention element. 11. This includes; • The development of NHS Quality Improvement Scotland (QIS) HIV Services Standards which contain standards devoted to HIV Prevention. These standards will be a key tool in continuing to make progress on HIV prevention activity in Scotland. • The development by NHS Health Scotland of guidance on HIV prevention targeting MSM and people originating from areas of high HIV prevalence, particularly African countries. Health Scotland are also linking into UK draft NICE Guidance on increasing testing in MSM and Black Africans as a contribution to the prevention approach in Scotland. b. Have the right groups been targeted in recent prevention campaigns? 12. In Scotland MSM are most at risk of new HIV infection. Thus, as part of the HIV Action Plan, NHS Health Scotland have developed the ‘HIV Wake Up’ Campaign (http://www.hiv-wakeup.org.uk/) 13. The campaign targets MSM with a primary message on regular HIV testing. It also has a secondary approach of safer sex through condom and lube messages. The campaign was informed by research with the key audience and materials were developed in partnership with third sector organisations as well as clinical and health improvement colleagues. 14. The HIV Wake Up campaign recently won the ‘Best Website’ award and received a ‘Highly Commended for Partnership Working’ at the Association for Healthcare Communications and Marketing (AHCM) Annual Conference. 15. The campaign has shown good recognition by local professionals and some early signs of acceptability of online communication to those MSM who do not traditionally access gay venues and organisations. As part of this process there have also been two pilots of enhanced, local support for implementation in NHS Boards to ensure that prevention messages are strengthened and local professional practice developed. 16. Scottish Government has also developed the ‘SexualHealthScotland’ website (http://www.sexualhealthscotland.co.uk/) which supports improvements in sex, sexual relationships and sexual health in Scotland. This website is targeted at those aged 20-40 and includes advice on HIV, as well as more general communication and safer sex advice. 17. Outwith Scottish Government campaigns, NHS Boards in the central belt of Scotland have also delivered local MSM focused campaigns which have been evaluated as a useful contribution to HIV prevention. c. To what extent have prevention initiatives targeted at injecting drug users been successful? 18. HIV prevention initiatives targeted at IDUs have been successful in Scotland in preventing new infection amongst this group. A major decline in the transmission of HIV among IDUs in Scotland occurred contemporaneously with the implementation of harm reduction measures, namely needle exchange and methadone maintenance therapy, in the late 1980s and early 1990s. 124

Memorandum by the Scottish Government (HAUK 62)

d. How could prevention initiatives be better delivered and evaluated? 19. Key developments within the HIV Action Plan are informing prevention approaches in Scotland with the development of clinical standards, guidance and recommendations for action with a focus on those considered to be most at risk. 20. There is a great deal of expertise in HIV prevention within Scotland, particularly within the Greater Glasgow and Clyde and Lothian NHS Boards where the great majority of those at high risk of, or living with, HIV reside. Work is ongoing to disseminate this expertise throughout Scotland but also to tailor prevention techniques to the needs of the NHS Boards’ populations. 21. The NHS QIS Standards on HIV prevention will support an increased evidence based approach to HIV prevention, particularly within the NHS. Testing a. Are current testing policies adequate across the country? 22. As a result of action set out in Respect and Responsibility, Scotland’s Sexual Health Strategy, Sexual Health (GUM) clinics in Scotland now offer ‘opt out’ HIV testing, i.e. it is offered as a routine recommended test. This has seen HIV testing rise considerably in Scotland and has enabled progress in addressing undiagnosed infection, particularly amongst men who have sex with men. 23. As part of the HIV Action Plan, it is expected that there will be an increase in testing uptake, particularly amongst MSM and persons originating from areas of high prevalence, with a lowering in the numbers who remain undiagnosed. 24. The HIV Action Plan also encourages NHS Boards to develop testing policies that take into account British HIV Association (BHIVA) HIV standards and guidelines, including routine testing for patients with early sentinel conditions in order to identify infection and prevent late diagnosis. 25. There are, however, some challenges in recognition and diagnosis of HIV in some acute and primary care settings, despite the BHIVA Guidelines and the CMO letter on ‘Improving the Detection and Diagnosis of HIV in non-HIV Specialties Including Primary Care’ (http://www.sehd.scot.nhs.uk/mels/CEL2007_15.pdf ). 26. In acknowledgment of this, work is ongoing nationally on professional education and training which will include support for non-specialists to identify and test for HIV. This is important in addressing issues around late diagnosis, particularly in those populations where late presentation is of particular concern. b. What can be done to increase take-up rates? 27. Opt out testing in sexual health (GUM) clinics has been key to increasing HIV testing take up rates in Scotland.

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Memorandum by the Scottish Government (HAUK 62) 28. In addition, key components of the HIV Action Plan encourage increased uptake in testing. • The NHS QIS HIV Standards will support improvements in the recognition and diagnosis of HIV. • National work currently being undertaken by NHS Education for Scotland (NHS NES) will support professional education and training, including recognition and diagnosis of HIV, particularly in non specialist health professionals. • The national ‘HIV Wake Up’ campaign promotes HIV testing amongst MSM. 29. Community testing by voluntary sector organisations is also important in reaching those who may be challenging to engage with, such as those using public sex environments or migrant populations. Treatment a. How can the NHS best commission and deliver HIV treatment? 30. NHS services in Scotland are not commissioned. 31. HIV treatment in Scotland is currently delivered highly effectively; recent Health Protection Scotland data indicate that continuing high levels of care and treatment are being provided for the increasing number of people living with HIV in Scotland (PLWHIV). 32. A formal HIV Treatment and Care Needs Assessment by the Scottish Public Health Network (ScotPHN) (2008) has informed both the HIV Action Plan and local service delivery. 33. The HIV Action Plan actions on HIV treatment include: • The national procurement of HIV anti-retroviral therapy to support NHS Scotland cost savings. • NHS QIS clinical standards for HIV treatment and care services. • NHS Health Scotland work to support PLWHIV, particularly more vulnerable groups, to attend and remain in clinical care. b. What impact might the proposed new commissioning reforms have on HIV treatment? 34. New commissioning reforms are not applicable in Scotland. c. In what setting can treatment most effectively be delivered? 35. In Scotland, HIV treatment is delivered effectively in both GUM and Infectious Disease (ID) settings. 36. Treatment is also available to some PLWHIV through ‘HIV Homecare’ where treatment is delivered directly to PLWHIV. 37. The clinical expertise required for effective HIV treatment delivery currently remains a specialist role within HIV services. 126

Memorandum by the Scottish Government (HAUK 62) 38. However, in managing HIV, particularly as a long term condition, there are areas of ongoing monitoring and anticipatory care which primary care services could potentially deliver in partnership with specialist providers. 39. Self-management of life with HIV can also potentially be supported by voluntary and community led initiatives and peer support. A cohesive and collaborative approach across these sectors would provide choice for people living with HIV with accountability to ensure follow up and outreach. Cost a. Have cost considerations been satisfactorily balanced with public health imperatives in HIV: (i) prevention policy; and 40. Scottish Government provides prevention funding through a BBV Prevention annual funding allocation to NHS Boards. This funding will be sustained in 2011/12. 41. NHS Boards work with partners in local authorities and voluntary sector organisations to deliver prevention initiatives with support from this key allocation. A one off review of BBV Prevention funding was carried out in 2010 to ensure that local deployment of projects and interventions was delivered appropriately. 42. As treatment costs increase, the cost efficiency benefits of preventing HIV infection are increasingly key, particularly as the cohort of PLWHIV begins to age adding increasing complexity, and cost, to their clinical care as well as an increase in care and support needs. (ii) treatment policy? 43. As part of the HIV Action Plan, national procurement of HIV therapies has, and continues to, secure cost savings for NHS Scotland. 44. Ongoing treatment is acknowledged in the HIV Action Plan as contributing to prevention of HIV transmission and thus associated with cost benefits in prevention of HIV infection as well as the morbidity and mortality associated with non treatment of HIV. b. Is research funding correctly prioritised? 45. Informing strategy and local delivery with evidence is key to Scottish Government approaches. Specific funding grants remain accessible through the Chief Scientist Office, for example. 46. Due to their key risk status, research on MSM is a particular area of focus and yields useful indications of behavioural surveillance and local prevalence but there are considerable challenges in assuring that robust evidence, beyond epidemiological data, is available. Due to the lower numbers of people from areas of high prevalence, evidence is more challenging to source for research studies, although some local qualitative studies have been funded by NHS Boards.

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Memorandum by the Scottish Government (HAUK 62) Stigma a. What impact does stigmatisation of those with HIV have on those infected, and on addressing HIV as a public health problem? 47. It is unclear whether wide scale stigma towards people living with HIV is prevalent in Scotland, but associated stigma which vulnerable populations experience, notably racism and homophobia, appear to amplify any which does arise. 48. HIV-related stigma, whether perceived or real is, however, still a key area to be tackled in terms of ensuring the normalisation of HIV testing and ensuring PLWHIV feel equal and valued members of our society. 49. Within Scotland, normalising HIV testing is key not only to reducing undiagnosed HIV amongst those most at risk but also those not traditionally ‘at risk’ and who perceive HIV testing as an implication of negative behaviours. b. Where are problems of stigmatisation most acute? 50. Within at risk communities, there are indicators that stigma can isolate individuals, interfere with positive health outcomes and stifle prevention initiatives but these have yet to be robustly researched. c. What measures are currently taken to tackle HIV stigmatisation? What more should be done? 51. Addressing HIV-related stigma is a theme that runs throughout the HIV Action Plan. 52. Education on and increased awareness of HIV in all populations is key and is part of the Scottish Government’s on going policy on HIV. The Health and Wellbeing theme within the Curriculum for Excellence in Scotland’s schools also seeks to remove stigma around health conditions, such as HIV. This evidence is submitted by the Minister for Public Health and Sport on behalf of the Scottish Government. 23 February 2011

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Memorandum by the Sex Education Forum (HAUK 49)

Memorandum by the Sex Education Forum (HAUK 49) Introduction The Sex Education Forum is a unique collaboration of diverse organisations representing children, parents, faith, disability, health and education. A list of members is included in Appendix 3. We believe that ALL children and young people are entitled to high quality sex and relationships education (SRE). The Sex Education Forum welcomes the appointment of the Select Committee for HIV and AIDS and the inclusion of prevention and public education as a key theme. Our response to the call for evidence focuses on the extent to which HIV and AIDS education is actually taking place in schools and the effectiveness of sex and relationships education (SRE) in preventing HIV. 1. Are young people learning about HIV and AIDS in school? Learning about HIV and AIDS and other sexually transmitted disease is the only aspect of sex education that is compulsory for all maintained secondary schools359 . Sexually transmitted infections are also part of National Curriculum Science for Key Stage 3 (QCA 2007) but HIV and AIDS are not specifically mentioned. The Sex Education Forum carried out an on-line survey with 1,709 self-selected young people aged 16-25 from England in 2008. Respondents were provided with a list of 19 SRE topics (see Appendix 1) that relate to the biological, social and personal aspects of sex and relationships and asked which they had learnt about at school. The topics that were most frequently taught included the biology of sex and reproduction (92 per cent) and the physical aspects of puberty (92 per cent). However only 69.8% had learnt about HIV and AIDS at school. One in 4 (27.7%) answered that they had not learnt about this topic, and a further 4.5% could not remember if they had learnt about HIV and AIDS. This question was answered by 1121 young people. The survey also asked if they had learnt all that they needed to about HIV and AIDS. Of the 1096 young people answering this question similar numbers answered yes and no to this question, with 46.0% reporting that ‘yes’ they did learn all that they needed to about this topic, and 44.8% answering ‘no’. A further 9.2% were ‘unsure’.

359

Statutory Instrument 1999 No. 2257 EDUCATION, ENGLAND AND WALES The Education (Non-Maintained Special Schools) (England) Regulations 1999 In exercise of the powers conferred on the Secretary of State by sections 328(6), 339, 342(2), (4), (5) and (6), 568(5) and 569(4) of the Education Act 1996[1], the Secretary of State for Education and Employment hereby makes the following regulations: Sex education 11. - (1) Arrangements shall be made to secure that every pupil who is provided with secondary education will receive sex education, or will be wholly or partly excused from such education (except in so far as it is comprised in the National Curriculum) if his parent so requests. (2) The governing body shall, in relation to pupils who are provided with secondary education at the school(a) make and keep up to date a separate written statement of their policy with regard to sex education, and (b) make copies of the statement available for inspection, at all reasonable times, by parents of pupils at the school and provide a copy of the statement free of charge to any such parent who asks for one. (3) In this Schedule, "sex education" includes education about- (a) Acquired Immune Deficiency Syndrome and Human Immunodeficiency Virus, and (b) any other sexually transmitted disease.

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Memorandum by the Sex Education Forum (HAUK 49) Young people were also asked ‘What is the best age to start teaching young people about HIV and AIDS? Just over half (52.9%) felt that the best age to start teaching HIV and AIDS was between 11 & 13 years old. Just under one third (30.2%) answered ‘between 14 & 16 years old’. 13.7% thought teaching about HIV and AIDS should start in primary school (see data tables in Appendix 2). Young people’s dissatisfaction with education about HIV and AIDS supports findings from Ofsted (2007), which state: “In particular, schools gave insufficient emphasis to teaching about HIV/AIDS. Despite the fact that it remains a significant health problem, pupils appear to be less concerned about HIV/AIDS than in the past”. Research about the knowledge levels of teachers found that many teaches are confused about the difference between HIV and AIDS (Westwood and Mullan 2007). Six per cent of teachers failed to identify HIV as a sexually transmitted infection, while the majority (72%) stated that AIDS is a sexually transmitted infection, which technically it is not. Summary The 2008 Sex Education Forum survey found that one in four young people had not learnt about HIV and AIDS in school. Of the young people that had learnt about HIV and AIDS in school almost half felt they had not learnt all they needed. Most young people suggested 1113 as a suitable age to start teaching about HIV and AIDS and some thought teaching should start in primary school. 2. Does SRE work? SRE aims to equip children and young people with the information, skills and values they need to have safe, fulfilling and enjoyable relationships and to take responsibility for their sexual health and well-being. SRE aims to contribute to behaviour change, including reducing unprotected and unwanted sex, and reducing harmful behaviour. Research shows that young people who have taken part in a good quality SRE programme are more likely to use condoms and contraception if they do have sex (Kirby 2007). In contrast, there is good evidence that a ‘just say no’ or ‘abstinence only’ approach combined with no information (or incorrect information) about contraception is not effective in changing behaviour in the long term (Guttmacher Institute 2007). So a broad programme of SRE is absolutely essential. Research carried out in England has found that areas of the country which have achieved the greatest reductions in teenage conception rates in recent years have provided both good quality school SRE as well as accessible sexual health services for young people (DfES 2006). We are not aware of any equivalent data looking at rates of HIV – and assume this would be difficult to measure routinely from public health data, for example due to high rates of undiagnosed HIV. Furthermore, national and international research shows that good quality SRE has a protective function as young people who have had good SRE are more likely to choose to have sex for the first time later. There is no evidence that SRE hastens the first experience of sex. These findings are confirmed by three separate evidence reviews: Kirby 2007, 130

Memorandum by the Sex Education Forum (HAUK 49) UNESCO 2009 and NICE 2010. Kirby (2007) examined 48 SRE programmes and found that 40 per cent of these had a significant impact in three aspects of behaviour: delaying the initiation of sex; reducing the number of sexual partners; and increasing condom or contraceptive use. None of the studies hastened the first experience of sex. Some SRE programmes have been found to reduce the frequency of sex – none of the programmes reviewed by Kirby (2007) resulted in young people having sex more frequently. The message that young people should wait until they are ready to have sex forms the basis of all good quality, comprehensive SRE programmes. Also, teaching young people about contraception does not contradict messages about delaying the first experience of sex (Kirby 2008). Summary Comprehensive SRE has an impact on young people’s behaviour by increasing use of contraception and condoms, reducing the number of sexual partners and delaying the initiation of sex. This behaviour helps protect from HIV transmission. In order to make use of contraception young people also need access to confidential youth-friendly sexual health services. 3. Young people’s experience of education about HIV and AIDS The Sex Education Forum is not aware of any recent research about the detail of what young people learn about HIV and AIDS in school in the UK. However, young people have repeatedly told us that their SRE is too biological; with 92% of young people having been taught about the biological aspects of sex and reproduction, but only 21% had been taught about skills for coping with relationships (Sex Education Forum, 2008). Young people who identified themselves as transgender, lesbian or gay were more likely were more likely to describe their SRE as bad or very bad (56, 55 and 54 per cent respectively). This compares with an average of 34 per cent of young people describing their SRE as bad or very bad (Sex Education Forum, 2008). In the UK most people with HIV come from two groups: men who have sex with men and people of sub-Saharan African origin (Terrence Higgins Trust, 2011). Currently BME men who have sex with men are amongst one of the highest 'at risk' groups of getting and passing on STIs, including HIV/AIDS (DoH, 2009). It is therefore crucial that SRE is positively inclusive in terms of gender, sexual orientation, disability, ethnicity, culture, age, religion or belief or other life-experience such as HIV status. SRE for all young people must be sufficiently comprehensive; and include information about sexual practices and the associated risks of HIV transmission. Biological information needs to be complemented with learning about relationships and the personal and social aspects of HIV and AIDS. In order to help fill gaps in the available evidence about young people’s experience of HIV and AIDS education the Sex Education Forum are shortly to launch a short on-line survey with young people. Questions will include: • •

Have you learnt about HIV and AIDS in school If yes: Did you learn all that you needed to about HIV and AIDS in school 131

Memorandum by the Sex Education Forum (HAUK 49) •

• • •

What did you learn about: - I learnt that negative attitudes and stigma can affect people with HIV and AIDS - I learnt that it is possible to live positively and stay healthy with HIV and AIDS - I learnt about how HIV is passed on (transmitted) - I learnt about how to prevent HIV transmission Have you learnt about HIV and AIDS from a parent or carer? Have you learnt about HIV and AIDS from any where / anyone else? How do you think education on HIV and AIDS can be improved?

The Sex Education Forum believe that all children and young people are entitled to good quality SRE and that young people should be actively involved as participants, advocates and evaluators in developing good quality provision. References Department of Health (2009) Sexual orientation; a practical guide for the NHS, Crown copyright DfES (2006) Teenage Pregnancy Next Steps: Guidance for Local Authorities and Primary Care Trusts on Effective Delivery of Local Strategies. London: DfES. Guttmacher Institute (2007) Review of Key Findings of “Emerging Answers 2007”. Report on Sex Education Programs. Guttmacher Institute. http://www.guttmacher.org/media/evidencecheck/2007/11/07/Advisory_Emerging_Answers_ 2007.pdf Kirby, D (2007) Emerging Answers 2007: Research Findings on Programs to Reduce Teen Pregnancy and Sexually Transmitted Diseases. Washington, DC: National Campaign to Prevent Teen and Unplanned Pregnancy. Kirby, D (2008) ‘The impact of abstinence and comprehensive sex and STD/HIV education programmes on adolescent sexual behaviour’, Sexuality Research and Social Policy, 5, 3,18−27. NICE (2010) Public Health draft guidance; School, college and community-based personal, social, health and economic education focusing on sex and relationships and alcohol education. http://www.nice.org.uk/nicemedia/live/11673/49240/49240.pdf Ofsted (2007) Time for Change? Personal, social and health education. London: Ofsted. Sex Education Forum (2008b) Key findings; Young people’s survey on sex and relationships education. London: NCB. Terrence Higgins Trust (2011) Accessed on 18 February 2011 from http://www.tht.org.uk/informationresources/hivandaids/howcommonishiv/ QCA (2007) National Curriculum: Statutory Programme of Study for Science http://curriculum.qcda.gov.uk/key-stages-3-and-4/ Westwood, J. and Mullan, B. (2007) Knowledge and attitudes of secondary school teachers regarding sexual health education in England in Sex Education, 7:2, 143 - 159 UNESCO (2009) International guidelines on sexuality education; an evidence informed approach to effective sex, relationships and HIV/STI education. Paris: UNESCO.

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Memorandum by the Sex Education Forum (HAUK 49) Appendix 1: List of 19 topics included in Sex Education Forum young people’s survey (2008) Topics • How our bodies change as we grow up and in puberty • Our feelings and emotions when we are growing up • The feelings and emotions that we experience in relationships and sex • The biological things about sex and reproduction (including how our bodies and sexual organs work) • Different types of relationships and families • Understanding what is good and bad in a relationship • Skills for coping with relationships • Dealing with pressure from friends and other young people • Making decisions about having sex and knowing if you are ready • Sexual identities, including gay, straight, lesbian, bisexual and transgender • Contraception • All the choices you have if you get pregnant (including abortion, adoption and parenting) • HIV and AIDS • Sexually transmitted infections • Where you can go if you need help with sex and relationship problems • The enjoyable and good things about sex • Messages from the media about sex and relationships (both good and bad) • Influences from family, community and religion about sex and relationships • The law about sex, including the age of consent, abuse, violence and rape

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Memorandum by the Sex Education Forum (HAUK 49)

Appendix 2: Data tables relating to HIV and AIDS questions from Sex Education Forum young people’s survey (2008) HIV and AIDS: Did you learn about this in school? Valid

Yes No Can't remember

Missing Total

Total System

Frequency 783

Percent 51.7

Valid Percent 69.8

Cumulative Percent 69.8

288

19.0

25.7

95.5

50

3.3

4.5

100.0

1121

74.0

100.0

394 1515

26.0 100.0

HIV and AIDS: Did you learn all that you needed to about this topic? Valid

Yes No Not sure

Missing Total

Total System

Frequency 504

Percent 33.3

Valid Percent 46.0

Cumulative Percent 46.0

491

32.4

44.8

90.8

101

6.7

9.2

100.0

1096

72.3

100.0

419 1515

27.7 100.0

HIV and AIDS: What is the best age to start teaching young people about this? Valid

Between 5 & 7 years old Between 8 & 10 years old Between 11 & 13 years old Between 14 &16 years old Young people should not be taught about this I'm not sure

Missing Total

Total System

Frequency Percent 35 2.0

Valid Percent 2.9

Cumulative Percent 2.9

130

7.6

10.8

13.7

639

37.4

52.9

66.6

365

21.4

30.2

96.9

13

.8

1.1

97.9

25

1.5

2.1

100.0

1207

70.6

100.0

502 1709

29.4 100.0

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Memorandum by the Sex Education Forum (HAUK 49) Appendix 3: Sex Education Forum Core and Life Members 1. Action for Children 2. APAUSE 3. ASHEC (Associaion for Health Education Coordinators) 4. Barnardo’s 5. Black Health Agency (BHA) 6. Body & Soul 7. British Humanist Association 8. Brook 9. CHIV (Centre for HIV & Sexual Health) 10. Church of England Education Division 11. CPHVA (Community Practitioners and Health Visitors Association) 12. Deafax 13. EFC (Education for Choice) 14. FFLAG (Families and Friends of Lesbians and Gays) 15. Forward UK 16. Fpa (Family Planning Association) 17. Image in Action 18. JAT (Jewish Action & Training) 19. LGCM (Lesbian and Gay Christian Movement) 20. Marie Stopes International 21. Marriage Care 22. Me-and-us 23. MEDfash (Medical Foundation for AIDS and Sexual Health) 24. Mencap 25. The Methodist Church 26. NAPCE (National Association of Pastoral Care in Education) 27. National AIDS Trust (NAT) 28. National Children’s Bureau 29. National Governor’s Association (NGA) 30. National Health Education Group (NHEG) 31. Naz Project London 32. NSCoPSE (National PSE Association for advisors, inspectors and consultants) 33. NSPCC 34. NYA (National Youth Agency) 35. Oasis 36. One Plus One 37. Parenting UK 38. Parentline Plus 39. Platform 51 40. PSHE Association 41. RCN (Royal College of Nursing) 42. Relate 43. Romance Academy 44. Stonewall 45. Straight Talking Peer Education 46. Tacade 47. Teens & Toddlers 48. Tender 49. THT (Terrence Higgins Trust) 135

Memorandum by the Sex Education Forum (HAUK 49) 50. UKYP (UK Youth Parliament) 51. UNICEF 52. Womankind 53. Working With Men 54. Young People in Focus Honorary Lifetime Members Dilys Went, Gill Frances, Hansa Patel-Kanwal OBE, Hilary Dixon, Jo Adams, Liz Swinden, Lorna Scott, Melody Dougan, Sue Plant February 2011

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Supplementary Memorandum by the Sex Education Forum (HAUK 91)

Supplementary Memorandum by the Sex Education Forum (HAUK 91) Funding cuts and sex and relationships education The Lords Select Committee on HIV and AIDS in the UK requested further information about how our work has been affected and how it will be affected in future by the prevailing financial climate. The Sex Education Forum runs a network of over 750 professionals working in the field of sex and relationships education (SRE) and sexual health. Recently we have been contacted by network members who have lost their job and others have reported insecurity for their posts over the coming months. These professionals include teenage pregnancy coordinators, local authority SRE advisors and healthy schools advisors. We anticipate that the loss of these roles is already damaging the development of good quality SRE in schools across the country. These professionals had specialist expertise and were in a position to support groups of schools across a local authority area to work together for example by developing shared resources, facilitating school parent consultation events on SRE and providing training for teachers across the area. These types of roles had a strategic function and could support schools in accelerating improvements to SRE. The Sex Education Forum itself is hosted by NCB and in the past few years our funders have included the Department of Health and the Department for Education. We are unique in representing 55 national voluntary sector organisations all working towards good quality SRE for children and young people. We are concerned that it will be difficult in the future to fund activities that support the SRE sector as a whole, such as the identification and sharing of good practice. Findings from our 2011 survey on HIV and AIDS education During the oral evidence session the Sex Education Forum shared early unpublished findings from our survey on HIV and AIDS education. At the time of the evidence session 500 young people had responded to the survey. The survey will remain open for more young people to give their views up until the end of April. Findings from the survey will then be summarised and a report sent in early May to the Lords Select Committee on HIV and AIDS in the UK. The survey asks young people: •

Have you been taught about HIV and AIDS in school

•

Did you learn all that you needed to about HIV and AIDS in school

•

What exactly did you learn about HIV and AIDS at school 137

Supplementary Memorandum by the Sex Education Forum (HAUK 91) •

Who else have you discussed HIV and AIDS with

•

What other sources have you used for information about HIV and AIDS

•

Do you think education on HIV and AIDS needs to be improved

The link to the survey on-line is www.surveymonkey.com/s/HW86Q6T 13 April 2011

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Memorandum by Sexual Health In Practice (SHIP) Birmingham (HAUK 7)

Memorandum by Sexual Health In Practice (SHIP) Birmingham (HAUK 7) Summary SHIP has worked with GPs, practice nurses and their teams in the West Midlands providing education and resources in sexual health for over a decade. Currently it is commissioned by 6 PCTs. There is good evidence that those at risk of HIV, and those with undiagnosed infection, use general practice - but are being missed. There are different types of HIV testing in the general practice context, necessitating different approaches in order to increase overall testing rates. These types are screening, opportunistic testing, diagnostic testing and testing at patient request. However GP testing rates in the UK are extremely low in at least some high prevalence areas. For many years SHIP in Birmingham has been working to increase GP opportunistic and diagnostic HIV-testing rates. SHIP has recently been piloting its methods in Haringey, an area with a high prevalence of HIV, and monitoring local GP HIV testing rates. We believe that strategies to increase HIV testing in general practice have the potential to improve approaches to prevention as well. We consider that screening (in high prevalence areas), and opportunistic and diagnostic testing (in all areas) should all be increased to help profoundly decrease the number of undiagnosed – and help diagnosis occur as early as possible. We consider that the interventions necessary to achieve increases in opportunistic and diagnostic testing rates include complex practice development and education interventions such as SHIP. This is because the barriers to testing to be overcome are multiple, and other approaches (such as the CMO letter to GPs; UK HIV testing guidance; various certificates and qualifications focussed on individual practitioners) have failed to increase rates. SHIP is, however, not simply an HIV-testing programme: it is committed to improving all aspects of sexual health care in general practice and as such may provide better value for money than an intervention focussed solely on HIV. Finally, we consider that the exclusion of GPs from the care of many patients with HIV has a number of important detrimental effects, including increased stigmatisation of HIV infection. 1. SHIP has worked with GPs, practice nurses and their teams providing education in sexual health for over a decade. Currently it works with around 88% of Birmingham practices and is commissioned by 6 PCTs. SHIP has recently been piloting its methods in Haringey, an area with a high prevalence of HIV, and monitoring local GP HIV testing rates. 2. SHIP i) Aims to work with ALL practices in an area – not simply individual practitioners with an interest. ii) Takes a whole team approach; for example, it trains reception staff and practice managers on issues such as confidentiality and access for young people. 139

Memorandum by Sexual Health In Practice (SHIP) Birmingham (HAUK 7) iii) As well as education, SHIP provides a range of support and resources for participating practices. For example SHIP can give advice on computer coding and templates for practices and also will supply condoms and pregnancy testing kits to participating practices. iv) Teaches on all aspects of sexual health, not just HIV. This has the potential for being more cost effective because other outcomes, such as reduction of teenage pregnancy rates, increased detection of Chlamydia, improved access to care for those in risk groups, and improved prevention interventions, are all concerns of SHIP. v) Uses GP and practice nurse peer educators. vi) Teaches risk assessment, through improved sexual history-taking, as the single most important skill for general practice to unlock other skills (increased HIV testing, better care for young people etc) vii) Liaises with other local services (such as laboratories for diagnostics and HIV services) to improve both the quality of education and of patient care. These features distinguish SHIP education from the variety of qualifications and certificates available for those GPs or practice nurses with an interest in sexual health. 3. Training evaluates well, but we are more interested in change of clinical practice than in course evaluations, and we have been assessing reported practice of nurses before, and 3 months after, training 360 . We are also in the process of measuring the impact of SHIP on GP HIV testing rates. We wish to respond to specific parts of the House of Lords call for evidence. Prevention a) Is Govt policy sufficiently focused on HIV prevention? d) How could prevention initiatives be better delivered and evaluated? 4. In our experience there is enormous potential in general practice to improve prevention. General practice is well-accessed by key groups (including men who have sex with men and Black Africans 361 362 ). However, opportunities for sexual health promotion and prevention are lost because of a lack of the necessary communication and health promotion skills on the part of GPs and practice nurses. Attempts to improve this might be difficult to evaluate, but it seems to us a shame to ignore the largest and most accessed part of the NHS because of the evaluation difficulties involved. We believe that (outside screening programmes) increasing offers of HIV tests will only happen when practitioners have the skills and confidence to discuss sexual health with their patients and assess risk. This, in turn, creates the right context for sexual health promotion including HIV prevention. Proxy indicators might be, for example, HIV testing rates or the rate at which practices give out and re-order condoms and who they give them to (if this is coded).

Mullineux, J; Firmstone, V; Matthews, P and Ireson R. ‘Innovative sexual health education for general practice: an evaluation of the Sexual Health in Practice (SHIP) scheme. Education for Primary Care (2008) 19:397-407. 361 Keogh,P; Weatherburn,P; Henderson,L ‘Doctoring gay men’ Sigma research report, 2004. 362 Burns, F; Johnson, A; Nazroo, J et al ‘Missed opportunities for earlier HIV diagnosis within primary and secondary healthcare settings in the UK’ AIDS (2008) 22:115-122. 360

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Memorandum by Sexual Health In Practice (SHIP) Birmingham (HAUK 7) Testing a) Are current testing policies adequate across the country? b) What can be done to increase take-up rates? 5. GP HIV testing rates in the UK are extremely low 363 . Many interventions that have been tried (such as the CMO letter to encourage GP HIV testing; UK HIV testing guidelines; many existing educational interventions) have made insufficient difference to testing rates. They fail to address the problem, for a variety of reasons. In order to understand what may increase GP HIV testing rates, testing can be broken down into four types: i) HIV screening tests HIV screening is being evaluated in general practice in high prevalence areas in newlyregistering patients, and we hope that you will be taking evidence from those involved in the pilots. We are very encouraged by the early results of some of these screening pilots. We believe that, should HIV screening be formally introduced within general practices in high prevalence areas, and should cost-benefit analysis demonstrate benefit, the programme will need to be properly resourced. However we think that practices may not need to be paid to provide the other forms of testing listed below: ii) Opportunistic testing of those at risk of HIV Identifying who is at risk of HIV involves GPs and practice nurses having the confidence and skills to initiate and conduct risk assessments (ie, to take sexual histories and talk about sexual health). Clinicians (or health care assistants) can then offer HIV (and other relevant) tests to those at risk. Clinicians also need to be thoroughly knowledgeable about the benefits to health of detecting HIV at the asymptomatic stage to ensure there is motivation to discuss HIV and offer tests. Sense can often be made of this approach for GPs and practice nurses if, in teaching, other relevant tests are considered such as sickle and thalassaemia screening; checking of rubella immunity or looking for viral hepatitis (depending on the clinical context). In other words, the teaching of HIV testing is integrated with other generalist knowledge: is peer taught. iii) Diagnostic testing of those with relevant symptoms People with symptoms of HIV present in general practice and are missed 364 365 . This is partly because GPs lack the clinical knowledge to associate the relevant symptoms and conditions with HIV. However, the majority of HIV-associated symptoms and conditions are very common in non-HIV-infected individuals. Therefore GPs need specific communication skills to help them manage these consultations, most of which will be with people who are HIV negative (and who may be at no risk of HIV), but the occasional one of which may represent a true presentation of HIV. HIV therefore presents a genuine challenge of both differential diagnosis and communication. We find strategies to manage this are best taught by GPs, because there is no analogy with the HIV specialist context (although there are parallels with presentations in non-HIV hospital settings such as A&E or outpatient clinics). Evans,H; Mercer,C; Rait,G. ‘Trends in HIV testing and recording of HIV status in the UK primary care setting: a retrospective cohort study 1995-2005’. Sex Transm Inf 2009 85:520-526. 364 Keogh,P; Weatherburn,P; Henderson,L ‘Doctoring gay men’ Sigma research report, 2004. 365 Sudarshi,D; Pao, D; Murphy, G et al ‘Missed Opportunities for diagnosing primary HIV infection’ Sex Transm Inf (2008); 84:14-16. 363

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iv) Patient request ‘I would like to have an HIV test’. This is the easiest to fulfil, although a) not such a common request, even in high prevalence areas, and b) we are aware that some practices are doing no HIV testing at all, and so presumably these patients are either dissuaded or referred elsewhere for testing. 6. SHIP training places a strong focus on increasing both opportunistic and diagnostic HIV testing. SHIP is well aware of the multitude of barriers to HIV testing that GPs and practice nurses perceive, and makes a strong case to practitioners that these barriers should be overcome and provides the necessary knowledge and skills to do this. Risk assessment, in particular, is a key skill for the general practice context because patients come from across the whole spectrum of risk, and (excluding HIV screening) strategies are required that take this into account. SHIP teaching of risk assessment embraces the clinical skills necessary for appropriate testing for other STIs, as well as encouraging awareness of contraceptive need and approaches to promote sexual health. SHIP teaching also gives clinicians strategies for managing patients with symptoms and conditions that may indicate HIV infection. 7. The relation between opportunistic & diagnostic testing - and screening: i) There is already evidence that the introduction of HIV screening (for pregnant women) did not substantially increase other HIV testing in general practice 366iv. ii) Screening pilots have thus far found that some (or, in some instances, many) practices decline involvement. We think that training to do opportunistic and diagnostic testing might help practitioners gain confidence and knowledge and ultimately increase the chances of involvement in screening programmes in their locality in the future. iii) In high prevalence areas, individuals will be missed if screening is only conducted on mobile (newly registering) individuals. We think that training in opportunistic and diagnostic testing should increase the total numbers of people with HIV detected within screening practices. Different skills are required. iv) In areas with a prevalence of HIV below the screening threshold (or if screening is found not to be cost-effective), increasing opportunistic and diagnostic testing rates will be the only way of improving HIV diagnosis in general practice. 8. GP HIV testing rates – does SHIP increase them? In Haringey, we have been collating the numbers of GP HIV tests done by using data from local hospital labs. Haringey, despite its high levels of HIV, is not currently involved in an HIV screening pilot. Laboratory figures therefore relate to opportunistic, diagnostic and patient-requested HIV tests. Antenatal screening tests are not included as these are arranged through the hospital. 9. We have HIV testing data for the two years preceding SHIP training, and also data (up to the end of November 2010) following the two rounds of training conducted in March and Evans,H; Mercer,C; Rait,G. ‘Trends in HIV testing and recording of HIV status in the UK primary care setting: a retrospective cohort study 1995-2005’. Sex Transm Inf 2009 85:520-526. 366

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Memorandum by Sexual Health In Practice (SHIP) Birmingham (HAUK 7) June 2010. By the end of June 2010 15/54 practices had had at least one GP and one practice nurse trained. In Haringey we have found that before SHIP training i) The total number of Haringey GP HIV tests had been steady at 550 per annum across the whole PCT for 2 years, despite other educational interventions on HIV during that time. ii) Practices ranged from 0 to 8 tests per 1000 registered patients: 17 of the 54 practices did no HIV tests in one or both of the years surveyed. iii) Average HIV testing rates for the four collaboratives (geographical groups of practices) ranged from 1.2 to 2.4 tests/1000 registered patients per annum, and this bore no apparent relation to HIV prevalence across the PCT. 10. Some key points from our early post-training data (up to the end of November 2010): i) The total number of Haringey GP HIV tests is projected to double for the year from March 2010, although the effect is diluted because of long intervals between rounds of training. ii) Post partial training, individual practices range from 0 to 13 tests / 1000 registered patients per annum - with one practice still not having done any HIV tests! iii) Collaborative testing rates have already risen to a range of 1.52 to 4.94 tests / 1000 patients, with the best increases in a high prevalence area. iv) Projected annual testing data for those trained in the first round in March showed roughly a 150% increase in testing in their practice. We expect subsequent data to show further increases as more staff in each practice are trained. 11. Positivity rates Prior to SHIP training 2.9% of GP HIV tests were positive in Haringey, which we find to be very high. We hope to see the number of tests increase greatly, the positivity rate fall, and the total number of newly diagnosed per annum increase. We are monitoring this, although whilst increases in numbers of tests are likely to achieve statistical significance, this may not be the case with numbers of positives in this pilot as it may be too small and delivered over too long a period. 12. Interpretation of our HIV testing figures Frustratingly in Birmingham, where SHIP has been training for years, laboratory GP HIV testing data is not yet available, mainly, it appears, because of concerns about confidentiality. We think these fears are misplaced, because we only seek anonymised data, and we are fortunate that public health and laboratory colleagues in North London have agreed with us. However, practices in Birmingham that are very involved in SHIP (and that record the number of HIV tests taken) tell us they think they are doing 20-30 HIV tests per 1000 patients per annum, in other words considerably above the rates yet achieved in Haringey. We hope that, over time, the rate in Haringey would exceed this (should SHIP training continue), because of the higher prevalence. 13. Using lab data, HIV testing rates can be counted only by practice, not by individual trained. We are forming the impression that to maximise practice testing rates we need to 143

Memorandum by Sexual Health In Practice (SHIP) Birmingham (HAUK 7) reach each individual nurse and doctor (ie, simply training one doctor and one nurse in a practice does not necessarily influence what is happening in the other consulting rooms at the practice). Of course we will be monitoring closely to see what happens as bigger proportions of clinical staff are trained within Haringey practices. We are also interested in how we fare as we start to work with those who come later to training, ie, those who may be less keen on the topic. SHIP is intended to be an ongoing resource, and so we hope HIV testing rates will not decline (particularly as what we can glean about Birmingham testing rates suggests they could increase substantially). There are other ‘one-off’ educational interventions which tend to be taken up by individual practitioners who have a specific interest in the topic. These include the STIF course and the RCGP certificate in sexual health as well as other local interventions in high prevalence areas. We have heard, anecdotally, that when HIV testing rates have been monitored after some of these interventions change has either not occurred or not been sustained. 14. Our Haringey HIV testing figures are diluted by the long interval between rounds of training, making it difficult to assess the impact of SHIP. However as HIV testing rates had ‘flatlined’ in the two years prior to SHIP training we hope to be able to draw some simple conclusions as the overall rate appears to have doubled already. 15. Limitations of the SHIP model in Haringey We have just completed a third round of training (January 2011) and are planning more (June 2011). We are delighted at the opportunity we have been given to work with Haringey GPs and practice nurses, but this is a slow pace. It also makes it much more difficult to interpret HIV testing data as it changes over time! 16. We lack a SHIP team in Haringey to lead SHIP locally and for administrative support. Currently teaching and training resources have been ‘parachuted in’ from Birmingham, although we have now trained a small number of local GPs and practice nurses to deliver training. A local SHIP team is needed to i) get to know the practices, support recruitment to training and foster continued engagement with SHIP to address their educational and development needs for sexual health ii) develop collaborative relationships with, for example, local labs, sexual health services and the voluntary sector. iii) develop an understanding of local practice IT systems, coding and templates and work with IT staff iv) produce locally relevant training resources 17. Haringey practices are not paid to conduct HIV tests, but locum payments have been provided to enable staff to attend training – however we understand these are often unclaimed. Of note, in Birmingham, locum payments have not been offered for over 7 years, but training courses remain full. In addition to locum payments to attend training, practices have access to condoms and pregnancy testing kits once one doctor and one nurse is trained. However these resources have been quite problematic for practices to obtain in Haringey because the system for ordering these is separate from SHIP. In fact it should be being managed by SHIP (so that the link with education and practice development can be retained and that SHIP is aware which practices are, for example, failing to order condoms). 144

Memorandum by Sexual Health In Practice (SHIP) Birmingham (HAUK 7) 18. We are sure a SHIP team could work effectively, and more efficiently, with a bigger group of practices than with what is (currently) one PCT. There might be a way of developing a SHIP hub and spoke model for London, and we think that a SHIP hub could work with 3-4 PCTs initially and build up once they have a pool of local trainers and resources. SHIP has managed to train a group of GPs and practice nurses in Haringey. 19. Currently in Haringey SHIP have not been commissioned to run our confidentiality course, which is aimed at pairs from practices, including one non clinical team member (for example the practice manager or lead receptionist). We find that confidentiality (and Fraser Guidance) are topics which come up in SHIP training and we would like to be able to offer this course: confidentiality as a topic does interrelate with the issue of HIV testing. 20. Improved training for newly qualified staff SHIP provides training for existing practitioners. We are always concerned that those who are newly qualified should not be as poorly served by their training as their predecessors. The Royal College of General Practitioners membership exam curriculum has for the last few years included relevant information on HIV and sexual health. SHIP educational approaches have been used in e-GP, the e-learning package designed to teach the curriculum for newly qualifying general practitioners. This currently has around 23,000 registered users. The Sexual Health and Contraception module aims to normalise HIV testing, and integrate it within everyday practice. e-GP can also be accessed by existing GPs and by practice nurses, although this is all too likely to be simply those with a special interest in sexual health. It is a useful resource to which to refer SHIP attendees who wish to consolidate what they have learned. 21. Although we do not have evidence that e-GP changes practice, it does evaluate well – and won a silver ‘e-learning Age Award’ in 2010. Despite this we understand that the future of e-GP is in doubt because of DH funding cuts. This concerns us. Cost b) Is research funding correctly prioritised? 22. SHIP training in the West Midlands and Haringey has been funded by PCT sexual health commissioners. Our attempts at evaluation, eg, to measure and increase practice HIV testing rates, have been done ‘in house’ at minimum cost. We do feel, because of the vast scale of general practice, that the potential for increased HIV testing is enormous. We would love to see a properly resourced and supported independent evaluation of SHIP, with controls, in a high prevalence area. However, outcome measures should not solely focus on HIV testing, as there are other benefits – and it makes no sense, in the GP context, to isolate HIV testing given other important sexual health priorities. Clinicians need to see a range of potential health benefits in discussing sexual health, and not just a sole one, to help motivate them to change practice. Stigma a) What impact does stigmatisation of those with HIV have on those infected and on addressing HIV as a public health problem? b) What measures are currently taken to tackle HIV stigmatisation? What more should be done?

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Memorandum by Sexual Health In Practice (SHIP) Birmingham (HAUK 7) 23. We believe that HIV remains stigmatised in the GP context, and that this acts as a barrier to testing and to prevention. Our work with practices aims to change this. However, current practice in many HIV specialist clinics increases the stigma of HIV by exceptionalising it, in some cases failing to write to the patient’s GP even when the patient requests it. 24. It should in fact be normal practice for specialists to communicate with GPs in the management of chronic and other conditions. Indeed, in the GMC ‘Good Medical Practice 367 368 is quoted the following: Sharing information with other healthcare professionals is important for safe and effective patient care. When you refer a patient, you should provide all relevant information about the patient, including their medical history and current condition. (point 51). If you provide treatment or advice for a patient, but are not the patient's general practitioner, you should tell the general practitioner the results of the investigations, the treatment provided and any other information necessary for the continuing care of the patient, unless the patient objects.(point 52) If a patient has not been referred to you by a general practitioner, you should ask for the patient's consent to inform their general practitioner before starting treatment, except in emergencies or when it is impractical to do so. If you do not inform the patient's general practitioner, you will be responsible for providing or arranging all necessary after-care.( point 53). 25. In our experience i) GPs find themselves unable to refer newly-diagnosed HIV positive patients in to care through normal referral routes (such as using Choose and Book, or by arranging a ‘soon’ or urgent hospital appointment). One GP was specifically requested to encourage the patient to use a walk-in service and was advised not to ‘bother’ with a referral letter (contrary to GMC guidance above, point 51). This is a far more anxiety-provoking experience for some patients, negates the GP role and exceptionalises HIV. ii) GPs frequently find they receive no, or only occasional, letters when their patients attend HIV clinics (contrary to point 52, above). iii) Patients are not infrequently unable to persuade hospital specialists to write to the GP, or feel anxious about making this request of their specialist in case the relationship is affected. 26. There is much mythology about this, but in our experience we estimate that hospital clinics should be able to encourage over 70% (some would say 90%) of their patients to involve their GP. We think some HIV clinics achieve this. 27. We believe that specialist HIV services should be required to audit and report: i) The percentage of their patients that are documented as giving, or withholding, consent to write to their GP. If consent has been withheld, the issue should be discussed and 367

http://www.gmc-uk.org/guidance/good_medical_practice/working_with_colleagues_sharing_information.asp.

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Memorandum by Sexual Health In Practice (SHIP) Birmingham (HAUK 7) sought again annually. We believe an initial target of 70% of patients giving consent to GP communication would be a reasonable start, but that higher rates could be achieved by many. ii) Of those patients with documented consent to write to the GP, the average number of clinic attendances that it takes to generate one GP letter should be recorded. We currently believe each and every clinic attendance should generate a letter (as is the norm for other specialties), unless locally agreed communication protocols deviate from this. In summary we think current GMC guidance is being disregarded by many HIV specialists and that this should be addressed because it serves to feed the stigmatisation of HIV. 28. In addition we think that quality of care of HIV patients is undermined by the lack of GP involvement. For example there is a risk that GPs – unaware of a patient’s HIV infection or perhaps simply their current antiretroviral therapy – may prescribe a medication that interacts. GPs learn about conditions, including, sometimes, exceptionally rare conditions, through collaboration and communication with the relevant specialists. The failure to establish normal communication in the care of patients with HIV has acted to keep GPs illinformed about this condition even in areas of comparatively high prevalence (indeed there is evidence that GPs in London are less likely to know of a patient’s HIV status than elsewhere 369 ). February 2011

Evans,H; Tsourapas,A; Mercer,C et al ‘Primary care consultations and costs among HIV positive individuals in UK primary care 1995-2005: a cohort study’. Sex Transm Inf (2009) 85:543-549. 369

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Memorandum by Shield South Yorkshire HIV Support Group (HAUK 26)

Memorandum by Shield South Yorkshire HIV Support Group (HAUK 26) 1. Prevention b) Have the right groups been targeted in recent prevention campaigns? 1.1 There seems to be a differentiation between the national and local campaigns resulting in varying results. Shield receives many prevention leaflets and other literature from the national agencies both statutory and voluntary sector and Shield’s staff have noticed a continued dominance of BME and MSM individuals on this information, we struggle to find a photo of a white British middle aged women on any of the prevention materials. This for us does not represent our socio-demographics of our clients. We cover both Rotherham, a small Metropolitan Borough Council, and Sheffield a large Metropolitan City and the White British heterosexual demographic is 25% of our base and increasing annually. 1.2 At the local level in Rotherham the NHS has been extremely responsive to the local groups that are being diagnosed and therefore supportive of our localised Education and Welfare Programme. Part of the reason the programme was set up was due to demand as national campaigns through videos etc were ineffective. National prevention campaigns do not target for example a young male in a small mining village and although this may group may only represent a small percentage of those being diagnosed Rotherham has high rates of STI’s in general and increasing rates of HIV in the borough. Prevention is about looking forward ten years to those who will be sexual active. 1.3 Our Education and Awareness Programme focuses on working with 13 to 18 years old young people within schools integrating HIV into PHSE curriculum. Between September 2010 and February 2011 we have delivered the session to more than a 1000 young people across Sheffield and Rotherham. By taking local people including a woman who lost her 24 year old daughter, a male rape victim and a Black African woman who is well integrated into the local community able to link her own cultural observations to those found with these target groups Shield makes HIV real. A key target group should be these young people as there is high sexual activity within small local towns and city neighbourhoods, not necessarily promiscuous sex rather having a relationship with a person they went to school with for a few years and then someone from their local pub. Very soon there will be webs of sexual activity and with HIV taking years to present but the potential risk is there. 1.4 The other seemingly forgotten group is the White British women aged 40 to 70 years of age. In the last 2 years Shield has seen rising registration numbers from this demographic then previously in its 25 years. Divorce is creating a new sexually active group who are naive to HIV, having spoken to this target group they agree with the ideas put forward for reasons for increased risk. In the 1970’s this group were concerned only with contraceptive as they were in their late teens, during the 1980’s HIV was projected as an issue for only gay men and they were married, in the 1990’s Africa was the main place for HIV and they were not worried. After 2000 there was no effective general public campaign and any there were evident were for the BME and MSM group. At this time their children had grown up and divorces increased. A new lease of life meant becoming sexual active again and as they were no concerns of pregnancy and HIV and other STI’s did not feature they put themselves at risk. There has been increased press about pregnancies within this group showing ultimately a risk of HIV transmission. At Rotherham Show in September 2009 a middle aged White 148

Memorandum by Shield South Yorkshire HIV Support Group (HAUK 26) British women who was with her young teenage daughter told Shield she was safe as long as she had the contraceptive implant. d. How could prevention initiatives be better delivered and evaluated? 1.5 As mentioned above target groups should include the local heterosexual young population and in a form that understands the sexual activity trends and cultural dynamics of the area. 1.6 Evidence of this approach being successful can be found from the evaluations of these sessions at a local Rotherham college as part of our World Aids Day programme. After speaker sessions and GUM talks attendances at the sexual health services at the college increased 26% with a large proportion requesting HIV testing. This group of 16 – 18 years old may not be highly active sexually but it shows an understanding of the risk and hopefully a continued trend of accessing services in the future. 1. 7 Quantitative data is not enough to reflect on something that requires a change in behaviour and beliefs. It is important to gain qualitative opinions, evidence for Shield’s Education and Awareness Programme includes: School Year 2010/2011 •

Cnt blive ery1 cn gt hiv n nt jst battys.

School Year 2009/2010 • •

“This was excellent, real life situations, real experiences, informative and it just makes you think.” ‘I am more aware about the dangers of HIV and also from XXXX’s story about date raping and being more careful on a night out’

Staff feedback – •

•

Rotherham College of Arts and Technology - From my view I thought it was very good, not only the fact from learning something about HIV and Aids, I mean the information they gave, but also because it was from their actual real life experiences which obviously makes it more realistic and it hits home with the students. Rawmarsh Comprehensive, Rotherham - Shield will have spoken with approx 200 students. The sessions provided by Shield have been invaluable in teaching students about the 'human aspect' of how HIV affects people and how the virus can be transmitted to a variety of people in different circumstances. Providing the opportunity for students to meet with people who have the virus is really important in overcoming and challenging stigma and stereotypes often passed down from parents.

1. 8 There are two points to be taken from the above evaluations. Firstly the ability of spelling and language found within the 2010/2011 comment. There is a presumption in a lot of the prevention initiatives that are leaflet and website based that the general public have a certain level of literacy skills. Literature can be found in other languages but prevention campaigns are missing a key group of the population who cannot read or write very well, this not only includes young people but adults. They may not constitute a large percentage of 149

Memorandum by Shield South Yorkshire HIV Support Group (HAUK 26) the population but handing them a leaflet will be of no value. It requires either a TV and radio campaign at the national level and small locally based face to face grass roots level work. Following an audit of the preferred information source for young people at a rural youth centre at Barnsley in 2006 they rated Youth Workers as the key source of information. 1.9 Secondly HIV and AIDS is not on the radar of the general public, it’s something that will never affect their daily lives, however risky behaviour in the form of speeding, binge drinking, substance misuse and the more frequently found STI’s are, this is something any prevention initiative must acknowledge. Young people and adults are likely to do one of the above at some point in their lives. There has been a national campaign regarding the date rape drug which young people have seen and thus the comment shows the speaker above struck a chord. Over the last few months in Yorkshire there has been press around crashes involving young people, 1 in 10 young people have Chlamydia, adults do go out on a weekend and drink too much, many young people will be offered drugs at some point in their lives. 1.10 By making HIV relevant and acknowledging the following issues methods can be created to ensure the future target groups will be addressed: • • • •

• •

BME and MSM are of course the groups of concern and require prevention work however there is a risk of over publicising such groups making prevention initiatives too focused and stigmatising the whole issue. Campaigns at the national level must acknowledge firstly how young people prefer their information but also the mediums they are able to access and understand. HIV must be linked to general risky behaviour. The preoccupation with testing must be delivered hand in hand with life skills and sexual and relationship advice, at some point a couple may wish to have a baby, condoms are no longer relevant, they must be able to negotiate taking responsibility of their sex lives. Prevention initiatives must take into account cultural trends, and importantly know their local geographies. Finally and most importantly finding the right balance between the message of prevention and the consequences alongside an attempt to put forward the idea that people living with HIV can due to treatment have a longer life expectancy, plan a future and have children. This is an incredibly difficult balance to promote, hence it must be acknowledged with initiatives that thoroughly understand the required messages. Evidence has proven that grass roots work that offers such balance can give a more holistic representation, speakers at Shield are purposely chosen to recognise the required balance therefore we have the mother of the daughter who died but also a HIV+ male who made bad life choices but works full time and has been positive for 20 years. Initiatives must ultimately focus on prevention must take into account the messages of HIV becoming a long term condition. At this point stigma work with all sectors of society must be delivered as discussed below.

2 STIGMA 2.1 Shield produces Individual Support Plans for all clients registering based on the governments 5 key categories for supporting vulnerable people, namely ‘Be Healthy’, ‘Be 150

Memorandum by Shield South Yorkshire HIV Support Group (HAUK 26) Safe’, ‘Enjoy and Achieve’, ‘Make a Positive Contribution’ and ‘Achieve Economic Wellbeing’. Due to treatment and increasing life expectancy the physical side of ‘Be Healthy’ no longer dominates. Mental health issues through isolation, depression and fear of disclosure are the key needs on the support plans of either the newly diagnosed or established clients who may be facing new difficulties and move into the intensive support category. Therefore many plans focus on ‘Be Safe’ and ‘Enjoy and Achieve’ through attending social groups with the aim of moving towards ‘Making a positive contribution’ and ‘Achieving Economic Wellbeing’, getting back into employment, accessing cultural activities and re-establishing connections with family and friends. All these care needs are associated with stigma whether that which exists or a perception of clients who fear or presume it will happen. Trying to support clients to understand that stigma is not always the cause of their daily issues is a large part of support time, particularly those who have mental health problems. In encouraging clients back into society anti-stigma work must be effective. 2.2 In terms of addressing HIV as a public health problem it is difficult for voluntary sector agencies that work purely within the UK supporting people living with HIV and education programmes. Small local charities cannot rely on public fundraising events to gain funds as stigma still prevails. It takes the form of a view that people who become positive have done so because of their lifestyle or as has been emphasised above people do not see HIV as relevant to their own life choices and thus a public health problem. People see themselves at being at risk of catching Swine Flu, people they know have had it, they do not see themselves at being of risk of HIV and have never known anyone with the virus. 2.3 Stigmatisation is difficult to generalise as at Shield we have had clients from a similar socio-demographic group receive very different responses from peers and the community. There is not one client from the various groups who has not felt they have been stigmatized. 2.4 Despite years of successful work within the MSM community there is some evidence of ignorance and discrimination against people living with HIV. Local examples in Sheffield include a young gay man who told a Shield Worker that they did not have to worry about HIV as long as they did not have any sexual contact with older gay men. It is not MSM work this person necessarily needed but general awareness work through the education system making it clear it can affect anyone who has sexual activity. 2.5 The other group where Shield has case studies showing examples of HIV stigma is within the small local BME communities with towns and neighbourhoods. For Africans dispersed through the asylum system the fear of being found out by the few BME individuals they may know who also live in the area is profound. Shield recently moved out of its Rotherham Office as its clients were too scared to come to it in case they were seen and would prefer to come to Sheffield. 2.6 Again the above groups feature highly in HIV prevention work and can be perceived as the only groups effected resulting in extreme stigma as there is no campaigns addressing the other socio-demographic groups. If there were it may decrease stigma, Shield case studies high light the danger of such stigma. In 2009 a BME client was hounded out of her house with dead animals put on her doorstep by neighbours who found out about her status. 2.7 Addressing stigma needs to be taking place within the HIV community and externally. Although there is again national attempts to reduce stigma through media campaigns there lacks a focused approach that looks into a more specific areas. In July 2009 Shield received funding from Rotherham Metropolitan Borough Council as part of its Voluntary Sector 151

Memorandum by Shield South Yorkshire HIV Support Group (HAUK 26) Training fund to deliver HIV awareness training to social care workers. The aim of these sessions is not only to address stigma found within the public but the professions that due to increased life expectancy and increased diversity of people being diagnosed with HIV are likely to have to care for someone living with HIV. The aims are as follows: • • • • •

Increase general facts about HIV, transmission and risk – as there had been previous cases where workers refused to enter premises, bathe clients or have any physical contact. Address their own personal stereotypes they may hold and allow them to discuss these in a safe environment. Hear a life story from someone living with HIV Analyse the policies and procedures of their work place, do they accommodate the confidentiality needs of people living with HIV. Increasing their confidence.

2.9 Evaluations of the sessions include: Why did you choose to come on this session? •

“In 24 years of working in mental health have never had any HIV/Aids training – should be mandatory”

•

“Because I found it interesting and with me not knowing much I thought it would be good, especially if we get residents with it”

When asked whether participants felt their learning needs had been addressed the mean score was 9.1 out of 10. Professional Development: •

“I found the whole training very informative and thought provoking”

•

“How to handle situations”

Verbal comment made at the 25th January 2011 ‘I was scared of HIV this morning and now I am not’ 2. 8 In December 2010 Shield coordinated and delivered Social Care and Residential Settings awareness sessions at a regional conference (Positive Yorkshire 3). 2.9 Professionals who come into contact with people living with HIV will be seen by these people as role models or people who are off professional standing and they expect to be respectful and thus it is important in a attempt to reduce cases of stigma within the field and the often devastating effect this can have on people living with HIV. All statutory and voluntary sectors who are likely to come into contact with HIV+ people require this awareness work as many have either not had any training or it was in the 1980’s. The focus areas should be disabilities, asylum (in new dispersal areas), school staff and youth workers (to accommodate the children of positive parents), social workers (as the AIDS Support Grant in no longer ring fenced) and GP surgeries (as the consortiums take a greater part in care). It would only require a short awareness programme of in this case a three hour sessions to address this need for education to reduce stigma and discrimination. Shield feels that the fact that on many of the national campaigns there is a lack of ethnic, gender, ages and sexuality diversity not only constricts any prevention work but establishes clear reasons for stigmatisation. 152

Memorandum by Shield South Yorkshire HIV Support Group (HAUK 26) Evidence by Zoe Davies, Strategic Director on behalf of Shield South Yorkshire HIV Support Group 16 February 2011

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Memorandum by Shika Tamaa Support Services (STaSS), Milton Keynes (HAUK 4)

Memorandum by Shika Tamaa Support Services (STaSS), Milton Keynes (HAUK 4) 1.

Monitoring/commissioning Could anything be done to improve monitoring? 1.1. STaSS experiences at first hand the difficulties in accessing monitoring data to allow us to plan, both operationally and strategically, to meet the needs of our client group. 1.2. Others will comment on the robustness of data, but we find that accessing timely and comprehensive data is at best problematic. Sensitivities about confidentiality are understood, but a more open approach to allowing access to local data would be helpful. We have built good relationships locally with our colleagues, but the difficulty of accessing data that is ‘fit for purpose’ confounds our attempts to take prompt actions together. 1.3. When data is provided, difficulties can be encountered when the data relates to ‘a hospital’ rather than the whole resident population. Trying to ‘join the dots’ between the numbers of people who have opted to access medical services away from the population in which they live, does not allow a comprehensive view of the impact that HIV is having on any given population. 1.4. Those who have families and conduct their everyday lives away from their treatment networks need support in their home location, and potential demand on local services needs to be planned for to allow the development of cost effective and integrated services. This local need does not just ‘go away’ if clients seek medical support away from home in more established providers and we need better information to plan local delivery in the community. Even if remote access to medical services is the chosen option for some as a result of fears of ‘stigmatisation’, we still find clients will more readily seek our community based services locally as a result of our discretion, confidentiality and relative anonymity. 1.5. With regard to perceived ‘gaps’ in information provision, we would note that we have so far been unable to identify sources of information to assess if infants are becoming HIV positive due to mothers being tempted to breastfeed due to, for example, economic circumstances. Many will not ‘disclose’ their status to their GP and thus prescription of infant feeds cannot be obtained, if indeed mothers are eligible for this. Investment in complex regimens to ensure that babies are born HIV negative is wasted if breastfeeding reverses the ‘success’ initially reported. In addition, ‘lifetime’ costs of infection are high and are in this case are an eminently avoidable commitment. 1.6. Furthermore, the numbers of children and indeed other close members of the family affected (not infected) by HIV are increasing. There is no robust way that we have found locally of monitoring this comprehensively and yet there are material consequences arising from the pressures of caring for infected parents, siblings, or partners which represent a cost to society. 154

Memorandum by Shika Tamaa Support Services (STaSS), Milton Keynes (HAUK 4) 1.7. Whilst the majority of our client group is drawn from the black African community, we are seeing increasing numbers of clients from the white heterosexual community who are diagnosed with HIV- many extremely angry and bitter that they ’did not know about HIV’ 1.8. A ‘one stop shop’ for data and more comprehensive population based data, produced on a more timely basis, with better local expertise in analysing the data, would help local commissioning and provision of prevention, treatment and community based care and support. 2.

Prevention Is Government Policy sufficiently focussed on HIV Prevention? 2.1. Given the enormous lifetime cost- both financial and human- of being infected with HIV (and given that infections acquired in the UK are not seeing the same rate of decrease as those acquired outside the UK) the need for effective prevention is a clear. Prevention is fundamental to reducing levels of HIV infection, and there is of course a strong link with sexual health campaigns in general. However the fact that messages have been subsumed under the general sexual health agenda has been- in our opinion- potentially catastrophic. Also the message that HIV is simply ‘another chronic condition’ has been misleading. 2.2. The lack of an up to date strategy for HIV (we believe that 2001 is the most recent substantive document) may be a significant indicator of perceived current priorities in respect of HIV services in general, and prevention activities in particular. It is also difficult to call to mind ‘recent prevention campaigns’ which may say something about their effectiveness and also the degree of focus on this issue. 2.3. However, any number of words contained in documents telling agencies what they should do about HIV prevention, and furthermore any number of words presented as proof that prevention activities are underway in response is no substitute for evidence that they are being successful. Have the right groups been targeted in recent prevention campaigns? 2.4. Targeting, though on the one hand naturally and necessarily focussing on highest proven prevalence, can be ‘overdone’ and can reinforce stigmatisation- which itself can feed back into self-stigma, mental health problems, risk taking behaviours and infection. This is a pan population issue, and the diverse society in which we live, where relationships cross boundaries of ethnicity, religion and sexual orientation needs to be taken into account. How could prevention initiatives be better delivered and evaluated? 2.5. Carefully crafted campaigns at a nationwide level focussed on the ‘whole population’, with greater emphasis on the third sector’s involvement, particularly at local level given their ‘grass roots appeal and knowledge, would be constructive. Approaching this issue through statutory health agencies alone, (some of whom may 155

Memorandum by Shika Tamaa Support Services (STaSS), Milton Keynes (HAUK 4) have lost touch with the detail of issues relating to HIV due to the plethora of targets and competing priorities that they have struggled with) will not work. Better evaluation would be facilitated by better and more timely and comprehensive data (see above) produced on a geographical basis and evaluated in partnership across the sectors providing services to a given population with emphasis on trends and better understanding of what data really ‘means’. 2.6. We would, however, wish to point out that concentration on ‘Prevention’ activities alone runs the risk of disregarding the needs of those currently infected and affected by this insidious condition. HIV infection and its social and medical consequences will not go away during the lifetime of those infected even if prevention activities are shown to be completely effective. 3.

Treatment What impact might the proposed new commissioning reforms have on HIV treatment? 3.1. Our experience of GP’s knowledge and sensitivity to clients with HIV (and to be fair that of some other health professionals) suggests, in some instances, that these are attributes which are often ‘lacking’. This has been evidenced by ‘literature returns’ based on the premise that ‘We do not have any HIV +ve patients’ (we know quite categorically that the contrary is the case) and the clients who visit us in tears due to outrageously stigmatising behaviour on the part of some health professionals. 3.2. We feel that this context will not make for a constructive basis for commissioning via GP consortia. We observe that the understanding of the issues surrounding HIV is poor at local level and any move to provide alternative contracted treatment services out with the hospital setting to save costs would be risky. 3.3. However, whatever the commissioning structure is agreed to be, it must not be too remote from the local situation, given the complex variables that exist at that level.

4.

Stigma What impact does stigmatisation of those with HIV have on those infected, and on addressing HIV as a public health problem? 4.1. Stigmatisation of HIV is an irrational response to the condition that fosters feelings of rejection and fear in the recipient and debases those who stigmatise. It is based on fear, ignorance, feelings of superiority and phobic attitudes. It stops people from presenting for testing, seeking help, creates enduring mental health problems, creates pent up anger leading to intentional infection of others- and worse. 4.2. Stigmatisation by the wider society rapidly ’turns inwards’ as clients self-stigmatise and this leads to denial. Denial impacts on family life as disclosure is felt to be impossible and so the greatest support mechanism can become the greatest barrier.

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Memorandum by Shika Tamaa Support Services (STaSS), Milton Keynes (HAUK 4) 4.3. Even now, many of our clients are so fearful of being identified that they will only keep in contact with us by phone- albeit in the early hours of the morning on occasion when people feel particularly vulnerable. This limits the amount of support that we can give. 4.4. HIV as an ‘issue’ appears somehow to have ‘gone underground’ and this exacerbates the ‘mythical’ nature of the condition. Immigrant communities, from countries previously ravaged by the condition have particularly strong responses when a community member ‘discloses’. Some religious groups persist with their judgement that the condition is a ‘punishment’ and some even recommend not taking drug therapies, with prayer and ‘miracles’ being the preferred course of redemption. We have recently lost clients under these conditions and we actively try to reach out and to educate to prevent this. What measures are currently taken to tackle HIV stigmatisation? What more should be done? 4.5. Greater openness and understanding about HIV- effectively a greater ‘normalisation’ of a very abnormal situation- could start to lay the foundations of a societal response that is less ‘judgemental’ and more sympathetic. This could lead to a greater willingness to disclose and seek help- indeed to admit that a person is at risk in the first place. 4.6. In order to ‘prevent’ transmission naturally there has to be a greater understanding that HIV, though treatable, is a lifelong condition and one that no-one would choose to embrace. The long term impact of the toxic cocktail of drugs available to treat people is unknown, but unpleasant side effects are common. However demonising those who have the condition is not the answer. 4.7. Whilst continued stigmatisation of the condition by the general public is worrying, the approach of some clinicians can be alarming, and we have found that face to face client: clinician debates have- with our support- helped to drive home, in a constructive way, the impact that stigma has on an individual. 4.8. Ridding the country of HIV stigma will be a slow process: education is key- both in educational establishments, workplaces, religious and ethnic groupings, but also in the ‘caring institutions’ such as hospitals, GP surgeries, and other statutory organisations. We believe that the third sector has a crucial role in delivering these services and should be supported in the work that they are doing in this field. 4.9. Sadly, the principles of the ‘BIG SOCIETY’ do not work as well for this care group when the general public find the idea of HIV abhorrent; when they consider infection with HIV to be a ’Lifestyle choice’ and akin to a modern day leprosy. Breaking down barriers at a community level, with groups working on the frontline connecting directly with all people- not just those infected or affected directly- must form an important plank of future strategy and action. February 2011

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Memorandum by Sigma Research and Department for Social and Environmental Health Research (SEHR), London School of Hygiene and Tropical Medicine (HAUK 27)

Memorandum by Sigma Research and Department for Social and Environmental Health Research (SEHR), London School of Hygiene and Tropical Medicine (HAUK 27) Many but not all of the questions posed in the call for evidence are briefly answered in this written submission. This response is authored by members of Sigma Research and the Centre for Research on Drugs and Health Behaviour within SEHR (listed on the final page). Clicking on hyperlinked text will take readers to detailed findings and further evidence as well as planning documents. Monitoring a. How robust is the current system for monitoring the number of people with HIV in the United Kingdom? The UK has a world leading HIV surveillance system that provides a comprehensive and timely picture of the epidemic. The surveillance system shows that the number of people living with HIV in the UK continues to grow (as it has unceasingly done since the beginning of the epidemic). The HIV epidemic in the UK has NEVER been in decline. It is important that the current system is maintained with the formation of Public Health England so that comparable and timely information remains available as the epidemic evolves. c. Could anything be done to improve monitoring? In order to better use the surveillance data for HIV prevention programming, the reporting of newly diagnosed infections would be better separated into those infections acquired by people living in the UK, and those infections brought to UK by recent migrants. Seroprevalence and behavioural monitoring of the most-at-risk populations could be expanded, for example there is no routine monitoring of HIV prevalence and risk practices among sex workers. d. What groups in particular are at risk from HIV? Sex continues to be the predominant mode of HIV acquisition in the UK. The majority of people living in the UK who are involved in sexual HIV transmission continue to be either men who sex with men, and/or African men and women. Whilst HIV transmission through injecting drug use remains relatively uncommon, HIV prevalence among injecting drug users is currently twice the level found in the late 1990s. Prevention b. Have the right groups been targeted in recent prevention campaigns? Black African people and homosexually active men account for the majority of all new HIV infections in the UK and the two national targeted HIV prevention programmes (CHAPS and NAHIP) correctly focus on these groups. These programmes consist of condom distribution, one-to-one information and advice, counselling, and group-work, as well as mass and small media campaigns. Structural interventions to improve the environment within which HIV prevention interventions are also undertaken. In addition to workforce development and knowledge and best practice exchange, these interventions contribute to the development and 158

Memorandum by Sigma Research and Department for Social and Environmental Health Research (SEHR), London School of Hygiene and Tropical Medicine (HAUK 27) dissemination of each programme’s strategic planning framework known as Making it Count and The knowledge, the will and the power. HIV prevention needs assessments conducted among the two primary target groups in the UK demonstrate that not everyone in each of these groups is equally in need. In particular, people from these two groups who are younger and/or who have lower levels of education (or who are in lower socio-economic groups) have far greater levels of unmet need. However, interventions are not proportionately benefitting these sub-groups. The average age of clients is generally higher than the average age of HIV acquisition, and people with university education are more likely to encounter interventions than those with little or no formal education. This is a major challenge for targetted prevention programmes (and is not solved by moving away from targetted programmes). Regarding health promotion targeting injecting drug users, HIV is one of a number of bloodborne viral infections linked to drug injecting. HIV prevention targeting IDUs is thus best undertaken as a component of wider blood-borne virus prevention activities, including with a focus on hepatitis C. Recent notable examples in England include the Harm Reduction Works campaign. Blood-borne virus prevention in the UK also requires continued investment in high coverage needle and syringe exchange schemes in combination with low threshold access to opioid substitution therapy. d. How could prevention initiatives be better delivered and evaluated? The two targeted national programmes (CHAPS and NAHIP) were never intended to be a replacement for local delivery of relevant interventions. With cuts to local authority funding and a reduction in other investment in HIV prevention, these relatively small national programmes look set to become increasingly important, as the only sources of intervention development and delivery. The two national HIV prevention programmes are commissioned by the Department of Health from charity sector providers, who then sub-contract their own evaluation. The programmes would be stronger if the Department contracted the evaluation directly, so that a standard commissioner-provider-evaluator relationship existed. A programme of local monitoring and evaluation should also be implemented to better understand local HIV prevention interventions delivered within the statutory and voluntary sectors (including those undertaken in faith-based settings, schools, community based agencies, etc.). With so few intervention evaluations having been undertaken, we lack a robust evidence base of what and how HIV prevention interventions work in this country. Testing b. What can be done to increase (testing) take-up rates? Sigma Research evaluated two community-based HIV testing pilots. The full reports of these evaluations can be found here: http://www.sigmaresearch.org.uk/go.php?/projects/policy/project42 Results from DH funded fastest evaluation: During the course of the 128 fasTest sessions 1120 HIV tests were undertaken, and 27 valid HIV diagnoses were made, at an overall HIV prevalence of 2.7%. The addition of fasTest interventions expands HIV testing capacity in a 159

Memorandum by Sigma Research and Department for Social and Environmental Health Research (SEHR), London School of Hygiene and Tropical Medicine (HAUK 27) locality and improves patient choice, so long as they do not replace pre-existing HIV testing services. More than half of all fasTest users reported that their main reason for choosing fasTest over other options for HIV testing was because the test result is available at the same visit. There is limited evidence to address the question of whether fasTest diagnoses people any earlier in their HIV disease history but initial comparisons with GUM samples suggests it does not. Results from gsk funded fastest evaluation: During the evaluation period, 662 people tested for HIV in three fasTest pilot sites. Among these, 20 received a new HIV positive diagnosis at an overall HIV prevalence of 3.0%. Comparisons with standard GUM in Bristol suggest users were more ethnically diverse and at higher risk of having undiagnosed HIV. The addition of fasTest interventions expands capacity and choice so long as they do not replace pre-existing HIV testing services. There is a need for clarity within all future HIV testing policy and programme formation about whether interventions seek to simply increase take-up of HIV tests or seek to increase positive diagnoses or seek to reduce the time between HIV infection and diagnosis, in order to improve health outcomes and reduce the likelihood of onward transmission. For instance, we note that the recent DH eight city expanded testing pilot, reported by HPA in Time to Test for HIV, does not indicate a very high rate of positive diagnoses among those taking part. Cost b. Is research funding correctly prioritised? Despite very limited expenditure on social HIV prevention research in this country over the years, a relatively small number of actors have amassed a considerable amount of accessible and useful data. Sigma Research’s programme of social research has been central to the development of the two national HIV prevention planning frameworks, Making it Count, and The knowledge, the will and the power. Specific research projects on gay men’s experiences of access to PEP, disclosure to GPs, drug and alcohol use, experiences of stigma and discrimination by gay men and African people with diagnosed HIV as well as the HIV prevention needs assessment surveys (Gay Men’s Sex Surveys as well as Bass Line surveys undertaken among Africans in England) have formed the bedrock of intervention planning at national level as well as informing many local interventions. The UK should be proud of its record of supporting social HIV prevention research which is the envy of many international colleagues, however many areas remain unexplored in much depth including (but not restricted to): • A good understanding of sexual attitudes and behaviours among African people. • Detailed insight into the features of sexual networks that are contributing to a rise in HIV incidence during heterosexual sex among non-migrant populations. • Alcohol and drug use as well as mental health issues, and their contribution to HIV incidence among African people in the UK. • Domestic violence and its association with HIV prevention need. • The sexual HIV prevention needs of young people with perinatally acquired HIV infection. • Community norms and attitudes towards monogamy, civil partnership, marriage and regular relationships among African people and gay and bisexual men. 160

Memorandum by Sigma Research and Department for Social and Environmental Health Research (SEHR), London School of Hygiene and Tropical Medicine (HAUK 27) •

The potential use of new technologies for social (and sexual) networking as health promotion settings.

Stigma a. What impact does stigmatisation of those with HIV have on those infected, and on addressing HIV as a public health problem? Sigma Research undertook extensive qualitative and quantitative research of the impact and extent of stigma and discrimination experienced by people with diagnosed HIV, described in our 2004 report, Outsider Status, which is available here: www.sigmaresearch.org.uk/files/report2004f.pdf The role of stigma features in housing problems among people with diagnosed HIV, as described here: www.sigmaresearch.org.uk/files/report2006a.pdf Combating HIV stigma and discrimination remains a significant need among people with diagnosed HIV who were asked about their experience of HIV related discrimination in What do you need? See www.sigmaresearch.org.uk/files/report2009b.pdf b. Where are problems of stigmatisation most acute? One in ten of people with HIV taking part in our What do you need? survey experienced discrimination in the last year from other family members, most commonly described as consisting of exclusion and rejection. One fifth had experienced discrimination in the last year from members of their own community. A further fifth had experienced discrimination in the last year from doctors or other health or care professionals. The two most common problems with healthcare providers involved a lack of respect, and significant (often unnecessary) restrictions in access to high quality health care provision. Respondents also reported ways in which health and care providers inappropriately altered the ways in which they delivered care because they were aware of the presence of HIV. In the worst cases, this involved denial of services (particularly in relation to dentistry, surgery and the taking of blood). Others reported exclusion from timely access to health care, including being told by GPs that all health issues must be taken to the HIV specialist out-patients clinic. Finally, were those who reported undue / excess precautions, such as double gloves and only being able to take the last appointment of the day in order that dental instruments could be sterilised afterwards. These findings clearly indicate the need for anti HIV-stigma interventions with non-specialist healthcare professionals. HIV-related stigma facilitates an environment in which HIV transmission is more likely to occur. As reported in Relative Safety II, www.sigmaresearch.org.uk/files/report2009d.pdf, stigma frequently makes it difficult for people living with HIV to disclose their HIV status to potential sexual partners for fear of rejection, and as a result some rely on implicit forms of disclosure (which may or may not be interpreted correctly by their partner), or not disclose at all. This submission is authored by: Peter Weatherburn, Director, Sigma Research, SEHR, London School of Hygiene and Tropical Medicine

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Memorandum by Sigma Research and Department for Social and Environmental Health Research (SEHR), London School of Hygiene and Tropical Medicine (HAUK 27) Tim Rhodes, Director, Centre for Drugs and Health Behaviour, SEHR, London School of Hygiene and Tropical Medicine Ford Hickson, Lecturer, Sigma Research, SEHR, London School of Hygiene and Tropical Medicine Catherine Dodds, Lecturer, Sigma Research, SEHR, London School of Hygiene and Tropical Medicine 18 February 2011

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Memorandum by South West London HIV and Sexual Health Network (SWAGNET) (HAUK 60)

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Memorandum by South West London HIV and Sexual Health Network (SWAGNET) (HAUK 60)

Memorandum by South West London HIV and Sexual Health Network (SWAGNET) (HAUK 60) Monitoring a. How robust is the current system for monitoring the number of people with HIV in the United Kingdom? The HPA does an excellent job at collating both national and local trends for HIV. The detail is excellent and it would be a pity for this to be reduced because of reduced staffing numbers. Local data on wards have been used to target education and to increase HIV testing. The 2009 figures have just been published at the beginning of 2011 and interim figures for 2010 would be very welcome especially in view of local targets to increase testing. There have been issues of patients attending more than one clinic and it is difficult to know the scale of the problem. b. Will the proposed public health reforms impact on this system? With change there is always concern that excellent services are dismantled. It will be important to maintain the service within the new NHS England/ Public Health. c. Could anything be done to improve monitoring? It is important to continue zero prevalence testing in a variety of settings to ensure that the increased testing is meeting the target to reduce late diagnosis. d. What groups in particular are at risk from HIV? Prevention a. Is Government policy sufficiently focused on HIV prevention? The general public have switched off, increasing there is a perception of not being at risk and consequently those undiagnosed are increasing putting others at risk. Young people born in the UK do not perceive themselves at risk. There is concern that with the cuts SRE programmes will not be addressing areas of sexual health including HIV. b. Have the right groups been targeted in recent prevention campaigns? People are sexually active across different age ranges and are involved in sexual experimentation. Insufficient work has been done with young people. We would like to see more opportunistic testing with opting out rather than opting in. c. To what extent have prevention initiatives targeted at injecting drug users been successful? Those not working directly with injecting drug users the local data appears to show that prevention initiatives have been working. d. How could prevention initiatives be better delivered and evaluated? Whilst it is difficult to evaluate prevention work, it is important to try and measure. This is possible through local research and we in SWL have found for example: that advertising for Chlamydia Testing on buses has been effective. 164

Memorandum by South West London HIV and Sexual Health Network (SWAGNET) (HAUK 60) Testing There is concern that in this present economic climate increased testing will not be reflected in the funding available for ongoing treatment and care. Whilst all professionals are working hard to reduce late diagnosis, funding must follow. a. Are current testing policies adequate across the country? Through our HIV Testing taskforce it is quite clear that testing policies need to be delivered locally. Even at sector level there is difference of client group and prevalence that prevents an all encompassing approach. On the whole SWAGNET feels that there is room for improvement in the current testing policies but is encouraged by the amount of effort that has recently been put into the DH HIV Testing initiatives. In SWL we are working hard to increase testing and would like to highlight the work in Wandsworth between Primary Care and Secondary Care Physicians which has resulted in a 45% increase in new diagnoses to St Georges Healthcare NHS Trust between 2009 and 2010. St Georges Healthcare NHS Trust is currently involved with a number of additional initiatives on HIV testing at Accident and Emergency, primary care, termination of pregnancy and the colposcopy clinics. Croydon is concerned that current HIV testing policies need to be improved 2 / 3 thirds of outpatients and 93% of our newly diagnosed inpatients at Croydon University Hospital are diagnosed late. The average inpatient stay for a newly diagnosed inpatient is 27 days and 16% require ITU/HDU care which is expensive and avoidable. b. What can be done to increase take-up rates? Further work needs to be done to normalise HIV testing across primary and secondary care. GUM services have a major role in education of other local providers to enable implementation of more widespread HIV testing. The evidence based from initiatives need clear and widespread dissemination to relevant specialties. HIV testing should be made routine and opt-out in all hospital admissions aged 16-59 especially in areas of high prevalence i.e. >2/1000 as per BHIVA guidelines Sept 2008. This needs to be made a national mandate / CQUIN in order to be effective. The same should be applied to all new patients at GP surgeries and in other situations outlined in the BHIVA guidelines. We would also like to see increased testing of male partners, including partners of pregnant women. Partnership working needs to be increased which is difficult when organisations are competing to deliver services. Treatment a. How can the NHS best commission and deliver HIV treatment? The present system of commissioning and delivering HIV treatment in London is working extremely well. The London Specialised Commissioning Group is successfully purchasing antiretrovirals on behalf of 23 London providers and achieving sufficient gains

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Memorandum by South West London HIV and Sexual Health Network (SWAGNET) (HAUK 60) However we do have concerns that there may be some inequity of tariff and look forward to PbR. We have found Networks to be very successful in linking together providers and commissioners across the sector. b. What impact might the proposed new commissioning reforms have on HIV treatment? There is some concern that commissioning nationally rather than locally means there is a lack of local knowledge, making local networks imperative for effective communication. These will need to be clearly funded. c. In what setting can treatment most effectively be delivered? Patients welcome the choice of treatment centre. Whilst there is a move for more centralisation the cost and time of travelling can affect the uptake of care. Centres are working more closely with Primary Care which is welcomed, but there may be a risk to the quality of care and increase in cost from fragmenting services which need to be carefully considered. Cost a. Have cost considerations been satisfactorily balanced with public health imperatives in HIV: It is imperative that we are not forced to use more toxic drugs to reduce short term costs and some flexibility needs to exist in using choosing optimum regimens for patients. HIV clinics provide comprehensive treatment, support, and partner notification, which will be difficult to duplicate if services are fragmented. These all contribute towards effective prevention and treatment policies which delivered through Primary Care may well be lost. Specialisation should not be under rated. (i) prevention policy; and (ii) treatment policy? b. Is research funding correctly prioritised? Stigma a. What impact does stigmatisation of those with HIV have on those infected, and on addressing HIV as a public health problem? Several decades on the amount of stigma for people diagnosed with HIV still remains high. Clinics in SWL report a high level of secrecy from their patients around their diagnosis this does nothing to support good prevention or increased HIV Testing. Your question highlights an area for more work. b. Where are problems of stigmatisation most acute? c. What measures are currently taken to tackle HIV stigmatisation? What more should be done? There is a lot to be done, a lot to be addressed. There is a misconception that all healthcare professionals are comfortable with HIV. This is not always our experience especially in Primary Care. Sex is not always a comfortable subject at the best of times. Therefore more publicity, more education. February 2011 166

Memorandum by South West London HIV and Sexual Health Network (SWAGNET) (HAUK 60)

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Memorandum by NHS South West, Office for Sexual Health in the South West (HAUK 85)

Memorandum by NHS South West, Office for Sexual Health in the South West (HAUK 85) 1.

Introduction

1.1

Written evidence is provided to the House of Lords Select Committee on HIV and AIDS to describe the rationale for establishing an Office for Sexual Health in the South West, its role and how it delivers its business. The written evidence also provides information on how the Office is taking forward its business within the Transition process. Contextual information about HIV in the South West is also provided.

2.

Purpose of establishing an Office for Sexual Health

2.1

The South West Office for Sexual Health was established in January 2010 as a Department of Health pilot to bring together all elements of sexual health policy to address the fragmentation created at a regional and local level by having separate national programmes for different elements of sexual health.

2.2

These included: Chlamydia screening (Health Protection Agency), reducing teenage pregnancy (Department for Education delivered by Government Offices), improving access to contraception (Department of Health), responsibility for NHS performance on access to genitourinary medicine services and reducing sexually transmitted infections (Department of Health and Strategic Health Authorities), service improvement (Department of Health).

2.3

The impact of the fragmentation was a silo approach to addressing sexual health outcome and service improvement with separate leads in different organisations or in different departments within organisations undertaking work in isolation without considering the relationship between different aspects of sexual health and service provision. This was causing barriers to progress in improving outcomes and services.

2.4

The Office provides leadership for all elements of sexual health through a stakeholder Board chaired by a Primary Care Trust Chief Executive and brings together the programmes at a regional level and seeks to integrate them at a local level.

2.5

Specialist Commissioning arrangements currently remain separate from the Office although the Board is undertaking work to strengthen engagement in relation to HIV services. The challenge of having HIV separated from other sexual health services and within specialist commissioning arrangements was identified by the South West Sexual Health Task Group, which pre-dated the setting up of the Office. A study to understand the epidemiology and service provision of HIV in the South West in 2009 identified that the role of Specialist Commissioning in the day to day commissioning of local HIV services and in the HIV networks was unclear. This remains the view of a high proportion of clinicians and commissioners in the South West.

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Memorandum by NHS South West, Office for Sexual Health in the South West (HAUK 85)

2.6

The study concluded that the following was required: •

a greater engagement from both commissioners and providers in the commissioning process of services for those with HIV;

•

the undertaking of detailed health needs assessments;

•

reviews of local services, including social care;

•

increasing HIV testing, particularly in high prevalence areas;

•

clarification of the role of the Specialist Commissioning Group;

•

more joined up working, through managed networks;

•

greater involvement of patients and users.

3.

The role of the Office for Sexual Health

3.1

The role of the Office for Sexual Health is to provide joined up leadership on all aspects of sexual health and deliver collaborative action to improve outcomes and services.

3.2

It does this by its strategy and work programme being led and monitored by the stakeholder Board, which includes NHS Chief Executive, Regional Director of Public Health, genitourinary medicine and sexual and reproductive health medical and nursing, Director of Public Health, British Association of Sexual Health and HIV, relationship and sex education, primary care, third sector and commissioner representation.

3.3

There is a clear work programme with a focus on: •

improving use of information to ensure a strong focus on monitoring improvements in outcomes and services;

•

quality assuring services through peer review to facilitate improvements in service delivery;

•

developing more patient friendly services by developing integrated sexual health services;

•

building representative local sexual health strategy groups to strengthen ownership and collaboration on developing and delivering a local strategy based on local need;

•

strengthening the commissioning function.

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Memorandum by NHS South West, Office for Sexual Health in the South West (HAUK 85)

4.

How the Office delivers its business

4.1

The Office delivers its business through a team that has a whole sexual health focus as well as team members having specific roles. This has been achieved by bringing together the existing regional Chlamydia Screening Facilitator, Teenage Pregnancy Coordinator and You’re Welcome Coordinator into a structured team with monthly team meetings and line management arrangements while leaving their existing employment arrangements in place.

4.2

Roles were redefined so that the Chlamydia Screening Facilitator became a Sexual Health Manager with a lead role for chlamydia, improving access to contraception and joint leadership of the quality assurance peer review process. The Teenage Pregnancy Coordinator became a Sexual Health Manager with responsibility for all aspects of young people’s sexual health, the You’re Welcome Coordinator became a part-time Sexual Health Manager with responsibility for Young People Friendly services and development of projects on workforce and the use of brief interventions in relation to drug and alcohol misuse and risk taking sexual behaviour.

4.3

In addition, information analyst support was commissioned from the Health Protection Agency and public health trainees were recruited to undertake project work. A freelance project manager was recruited to manage the quality assurance peer review process. Other work is being commissioned from specialists in 20112012.

4.4

The team delivers a work programme agreed by the Office for Sexual Health Board. Board meetings take place quarterly and the team produce papers and present their work so that the Board can decide how it should be taken forward and review progress.

5.

Work programme in 2010-2011

5.1

The following work programme was delivered in 2010-2011: •

•

provision of quarterly performance indicator set for each Primary Care Trust showing their performance on 10 sexual health indicators against all other Primary Care Trusts in the region. Organisations are also encouraged to look at their performance alongside comparator areas across the country using the Sexual Health Balanced Scorecard. There are three HIV indicators: •

rate of HIV new diagnoses in total and by mode of transmission;

•

recently acquired HIV infection (last six months by risk group) – not yet able to get complete data;

•

late diagnosis, % with CD4 cell count