House of Commons - Health - Appendices to the Minutes of Evidence

Select Committee on Health Appendices to the Minutes of Evidence

APPENDIX 38

Memorandum by Pan London HIV/AIDS Providers Consortium (SH 58)

1. INTRODUCTION

The Pan London HIV/AIDS Providers Consortium is a network of 36 voluntary and community organisations providing HIV services in London. Our main aims are to:

— speak with a collective voice on issues that affect the HIV voluntary sector in London in order to influence the policy agenda of local, London and national Government;

— help organisations to understand and respond to the policy and funding climate they work in; and

— argue for and help develop more strategic and collaborative systems for addressing the commissioning and provision of HIV services in London.

2. SUMMARY

We welcome the publication of the National Sexual Health and HIV Strategy; a more strategic approach to dealing with HIV issues has been needed for many years and it has been useful to discuss the issues addressed by the Strategy with a range of colleagues from various sectors and settings. We also welcome the opportunity to scrutinise the effectiveness of the Strategy through this Commons Inquiry.

While there is much in the Strategy to be welcomed, our main criticism is that it deals with the medical and clinical aspects of HIV and sexual health at the expense of the social context and broader determinants of health which are equally important. This is reflected by the fact that the Strategy is very much a Department of Health publication which does little to secure the commitment of other Government departments which have a role to play in improving the health and quality of life of people with HIV and STIs.

Much has been made of the decision to amalgamate the previously separate HIV and sexual health strategies. While in many ways this makes perfect sense, it is also not the only lens through which to view HIV, and it has also led to a blurring of the priority issues for appropriate target groups. Thinking of HIV in terms of social exclusion and health inequality may be more useful.

The Strategy overplays the role of information in bringing about changes of any kind, and is particularly over-reliant on the use of mass media campaigns.

Without appropriate resources there is a danger that the Strategy will be ineffective. However much we may shy away from the issue of resources and investment, the fact remains that we get the services we pay for. There is a limit to what can be squeezed out of existing resources. It is unfortunate that the launch of the Strategy co-incided with the decision to mainstream the ring-fenced HIV prevention allocation and major structural change in the NHS. Through its Strategy implementation plan, the DoH must to allow enough time to put in place alternative arrangements and to monitor expenditure particularly on vulnerable areas of work such as gay men's HIV prevention and health promotion.

The NHS is currently undergoing unprecedented change and reform. There is a danger that HIV and sexual health issues will not be given sufficient priority in PCTs as they develop their roles, new relationships and funding priorities. The Strategy is also weak on the issue of collective commissioning by PCT consortia. In London particularly, it is not appropriate for each PCT to commission HIV services in isolation given the mobility of the population.

3. SPECIFIC POINTS

Our points follow the format of the Strategy.

3.1 Sexual Health in England today

The definition of sexual health given in the Strategy is broad and reasonably positive but its aspirations are not borne out by the rest of the Strategy which reduces sexual health to the factors which NHS clinical services can deal with. More consistency is needed.

It is encouraging to see some focus on "inequality" but we need a more in-depth analysis of the issue. For example, how does the inequality and social exclusion faced by gay men and by people from Black and minority ethnic communities contribute to problems of HIV and sexual health? Do these groups get their fair share of prevention resources? What kinds of blocks are there to their access to services?

3.2 Aims and principles

The Strategy is too reliant on the provision of information as a means to an end. There is considerable health promotion theory available which makes it clear that improving people's health and quality of life is a complex process requiring multi level action. Information is an important part of this, as is access to services, but alone, neither will make much difference.

The inclusive focus of the Strategy is welcome, but this inclusivity is limited. If we are serious about targeting work where it is most needed, this needs to be followed through in the recommendations of the Strategy. In particular, the needs of certain key groups have been missed and this must be addressed urgently. Groups include:

— sex workers

— people with learning disabilities

— people with physical disabilities

— lesbians

— people in prison

— vulnerable young people including those in/leaving care

— older people

— young women starting puberty

— older women starting the menopause

— issues for BME groups need to be unpacked a little more to reflect the differences between and within the different ethnic groups—for example, the concerns and priorities of African-Caribbean people are not the same as those of Africans.

Additionally, it is vital to acknowledge that none of these groups are homogenous and that it is difficult to talk about the needs of "African communities" given the variety of cultures, languages, religions and histories.

3.3 Better prevention

The Strategy's concept of HIV prevention is too reliant on the provision of information and does not recognise the complexity of health promotion. It would be more useful for the Strategy to endorse a model of health promotion, for example a community development approach which operates at multiple levels and includes factors such as the provision of information alongside improving services and addressing the broader determinants of health.

There are concerns about the use of mass media campaigns. The HIV campaigns of the 1980s are often quoted but in fact those campaigns merely frightened those who were at little risk of HIV in the first place. The really effective work at the time was being done by gay men living with of affected by HIV organising and mobilising to do something about the crisis situation they were in. This kind of community action, much of which happens through the voluntary and community sector, has a vital role to play and should be promoted by the Strategy. In a world dominated by marketing and advertising, it is important that we remember that the routes by which people arrive at decisions about health are complex, and although the media has a role to play, this is limited and needs to be supported by more targeted interventions at local level. Mass media campaigns should only be developed when the following questions have been answered:

— What is the aim of the campaign?

— Who is the target audience and is this the best method for achieving the aim?

— How will impact be evaluated?

— How will local initiatives and services support the campaign?

— Are there any possible negative unintended outcomes and how can these be dealt with?

The target of a 25% reduction in newly acquired HIV infection is unrealistic and begs questions about how this figure was arrived at. On its own, it seems like quite a blunt instrument. It would be better to develop a more sophisticated range of targets which by association point to a reduction in HIV transmission. Some of these could be process based and relate to specific actions needed to implement the Strategy. Targets are also needed which are positive in focus and relate to improved health and quality of life.

The focus on targeted HIV prevention is extremely welcome. However, there is a danger of developing a tick-box approach to this. CHAPS is a very significant partnership and using Making it Count for local work is a good idea, but these are not the only approaches that can and should be taken. Furthermore, much of gay men's HIV prevention has been moving to a more holistic model of health where HIV is seen as one of a number of issues needing to be addressed with multi-level approaches. Tackling the fundamental inequality faced by gay men in England is also very important. This more holistic approach is being taken in some other areas of DoH policy, for example on health inequalities, but it is lacking here.

The role of the voluntary and community sector needs to be analysed further. We know that the sector is often better equipped to work with marginalised communities and to establish trust. It can also be extremely flexible and responsive. However, it needs the resources and a strategic approach to building capacity in order to do this. The sector also lacks power and visibility. Gay men's health improvement needs to be mainstreamed into the range of partnerships and initiatives addressing health inequalities often at local level, and not kept at the margins. Voluntary organisations cannot do this alone and need champions within the statutory sector to enable this to happen. This will be particularly important in the light of the mainstreaming of the ring-fenced HIV prevention allocation from April 2002. Given the problems encountered with ensuring appropriate expenditure on target population groups when there was a separate financial allocation, what assurances can we have that this situation will not worsen next year when work on unpopular causes such as gay men's health will have to battle it out with all the other demands put upon NHS funds? The Strategy must address how mainstreaming can become a reality.

We are aware of the framework being developed for work with African communities, but similar questions need to be asked of this initiative as of work with gay men. How can we ensure that a holistic approach is developed and that initiatives link into the wider BME voluntary sector, particularly in London? The issue of power and influence also applies here; the work should not only be carried out at the margins, but be seen as mainstream activity carried out by an appropriately resourced voluntary and community sector.

It is encouraging to see some emphasis on the needs of injecting drug users. However, there are real concerns about needle and syringe exchange schemes becoming less of a priority for PCTs, particularly given the estimated prevalence of hepatitis C which is far higher than HIV.

It is wrong to put the responsibility for overcoming issues of stigma, discrimination, poverty, social exclusion, language, etc, purely onto commissioners and service providers. Many of these issues are out of our control and require Government action at a higher level.

3.3 Better services

Our general point here is that the focus is too strongly on NHS clinical services. The voluntary and community sector has an important role to play as do many local authority departments. All need to be seen as partners with a good deal to contribute to the overall initiative.

3.3.1 We welcome the development of more integrated service models. This is something the HIV voluntary and community sector has been starting to develop, particularly in relation to joint work with HIV clinics. However, the partnership needs to be broader than just the NHS; and any work to clarify roles, develop service models and networks and provide staff education and training must include the voluntary and community sector. These partnerships and any training carried out to assist their implementation must always be underpinned by clear standards so that staff are clear about what is expected of them.

3.3.2 We also broadly welcome the greater involvement of primary care teams in HIV and sexual health work. In terms of HIV, it has suited both them and us to keep things separate. However, given the projected increases in numbers of people diagnosed HIV positive in the next few years, the current situation is unsustainable. There is undoubtedly a greater role to play, but we must not underestimate the barriers:

— Many people with HIV and people from population groups severely affected by HIV do not have faith in primary care systems to deal with them competently, appropriately and sensitively. Confidentiality, that is, the sensitive management of information, is a major concern.

— We are not convinced that primary care providers themselves feel competent and confident about dealing with HIV related issues, particularly outside high prevalence areas. In addition, it may be unrealistic to expect generalist primary care providers, particularly in single handed practices (42% in London) to take a more proactive role.

— People do have confidence in the services provided by GUM clinics. The problems are more to do with access than with what actually happens once they get there. If we have a system that works, does it not make sense to build its capacity instead of looking for alternatives?

This does not mean that we are opposed to greater primary care involvement; there is a lot that should be done. However, initiatives will need careful planning and to be realistic and underpinned by clear standards. For example, many people with HIV present for testing at a very late stage showing symptoms that should have been picked up by a GP as possibly indicative of HIV—this is quite unacceptable and needs to be tackled urgently. Voluntary and community organisations could have a useful role to play in helping to develop and deliver services here.

3.3.3 HIV testing—clearly it is important to encourage those at risk of HIV to seek a test. However we must remember that HIV is different. A problem with the ante-natal testing programme is that it has sought to normalise testing without really thinking through the consequences of a positive result for the pregnant woman, particularly the non-medical consequences which have left some women HIV positive, abandoned by their partner and sometimes subjected to domestic violence. People do still need information and some degree of pre and post test counselling in order to deal with what could be a major life change. The voluntary and community sector could have a role to play in providing counselling and support services as part of integrated package of services delivered by primary care practices with an interest.

3.3.4 We fully support the introduction of managed networks for treatment and care services. These have been discussed for some time and we must now get on with implementation. It is important that voluntary sector services are linked in with those of HIV clinics as a way of maximising access to appropriate social care services.

3.3.5 Managed networks should also be developed for children's services. These need to integrate paediatric clinical services with those of local authorities and the voluntary sector into a coherent model which provides the holistic support needed by families affected by HIV. An outcome of the impending review of AIDS Support Grant must be that the funding formula more accurately reflects the work being carried out and commissioned by social services. Much of this is complex family support work which needs to be funded appropriately.

3.3.5 HIV voluntary organisations:

We welcome the fact that the Strategy gives some acknowledgement of our role, though in fact our contribution is often more complex. There is also a danger that in a Strategy which promotes a medical/clinical approach, the voluntary sector gets marginalised and is seen as less of a priority for funding. We are also concerned that many of our partners outside the voluntary sector confuse the role of the voluntary and community sector with service user involvement—they are not the same thing and this distinction should be made both in terms of HIV and sexual health.

There are a number of specific issues which need to be raised:

— commissioning of voluntary sector services.

This is a problem, particularly in London. While the move towards more local, PCT based commissioning is welcome in many instances, in terms of commissioning voluntary sector services, it is not. People with HIV in London have to navigate their way through a system of very different, inequitable services. Providers are often put in the difficult position of having to deny access to people who come from a borough/district that does not fund the service. There is currently no expectation that commissioners should work together across the Capital to resolve this. When they do, and fortunately we have seen some examples of this, it is due more to key individuals than to a system that requires it. Commissioning needs to reflect the reality of people's lives and there is a danger that devolving all responsibility to PCT level will miss the fact that Londoners live in a large world-class urban centre where people group together more by community of interest than by geography. People live, work and socialise in different boroughs and this modern urban context should not be ignored by the Strategy.

The Strategy needs to give direction to PCTs about how they should collaborate with each other and with local authorities to commission voluntary sector services. Standards need to be developed for commissioners who are often expected to have a good grasp of too broad a range of issues. These standards should outline competencies and be used as a basis for training and development. Compacts need to be developed to guide the relationship between commissioner and provider. Unfortunately, NHS funders have been slow to develop these but they are proving useful in clarifying the relationship between the voluntary sector and local authorities and other statutory bodies. The development of the Commissioning Toolkit is an opportunity to address this. Furthermore, it is important that provider organisations are invited to take part in developing the toolkit. We have experience of the commissioning process and much to contribute in terms of good practice.

Furthermore, decisions need to be made about which services should be funded and which providers are competent to provide them. We need to build the capacity of organisations to deliver the good quality, effective services people will need. Organisations need to work on the quality of their services, both in terms of internal, organisational issues and in terms of developing common standards for specific services. Commissioners and people living with HIV need to be actively involved in this process.

3.3.6 Better commissioning:

Some issues around commissioning have already been covered above. The main point to make here is that commissioning arrangements should be appropriate to the area in question. What's right for London will not be right for a low-prevalence rural area. Commissioning in cities such as London needs to cut across PCT boundaries as these do not necessarily reflect the lives and needs of people with or at risk of HIV. It is not appropriate, for example to commission gay men's HIV prevention purely at local level. Neither would such an approach be suitable for voluntary sector services for children affected by HIV. Local Authorities must also be required to commission in partnership with PCTs and with each other.

3.3.7 Service user/community involvement:

We look forward to more guidance on how this will be done. There is still no national mechanism for ensuring people with HIV have an input in developing a strategy like this. The new local planning arrangements proposed in the Strategy will need to ensure that user and community involvement is built in from the beginning. Even in London where the majority of positive people live and many more are treated, there is no straightforward way of doing any of this. The Government's strategy on Involving Patients and the Public in Healthcare contains constructive ways forward and it is important that issues such as HIV are included in such initiatives. Imaginative ways need to be developed by both commissioners and providers to ensure that services are based on the needs on actual or potential service users. This kind of work is complex and long term, however, and needs to be appropriately resourced.

3.3 8 Collecting information:

Information collection from providers needs a radical overhaul. It often seems that we know the cost of everything and the value of nothing. The emphasis should be on less monitoring and more evaluation. The information sought for monitoring purposes should go beyond numbers and should link to the evaluation of services so that we start to build a picture of the effectiveness of services as well as how many people pass through them. Data collection systems need to be standardised and simplified. A London provider with contracts with a number of health and local authorities could be faced with the demands of a dozen commissioners requesting similar information in different formats. This wastes a lot of time. Commissioners and providers must be compelled to ensure they meet the requirements of the Data Protection Act. There is also a problem with the ethnic monitoring currently being carried out. Categories need to be sophisticated enough to reflect different African population groups and should also provide a way of measuring the impact of emerging epidemics particularly in Asia and the Caribbean. The review of the AIDS (Control) Act reporting system offers an opportunity to do this.

3.3.9 Evidence base and research:

A more joined up approach between research and service provision is needed, with each informing the other. Evidence needs to be treated with caution—evidence can be subjective and the fact that there is no evidence for something may suggest no more than that no-one has done the research. Arguments about evidence should not stifle innovation or prevent unpopular or potentially controversial work from being funded.

3.3.10 Professional education and training:

The voluntary sector often gets forgotten in this and it can be low priority for us when funding is tight. We need a more collaborative relationship with commissioners so that training and development are seen as an appropriate investment which will lead to better services in the long term.

3.3.11 Finance

The timing of this Strategy is most unfortunate. To launch the strategy and mainstream the HIV prevention allocation at the same time as major structural change in the NHS can only lead to problems. The Strategy needs to be supported by a detailed action plan which specifies how the aspirations of the Strategy will be turned into reality. Serious thought needs to be put into the mainstreaming of HIV and sexual health and we will all need to become more creative about how we ensure the issue gets the priority it deserves in PCTs. The DoH however, has a particularly important role to play here in providing support and direction and in monitoring progress.

While the end of ring fenced funding was inevitable, ways must be found to lever-in the investment needed by sexual health services which have long since been a poor relation. The issue of bringing in resources cannot be avoided, particularly for GUM services which in London are already stretched to capacity. Indeed it would be irresponsible to implement a strategy which encourages greater uptake of services without ensuring the infrastructure is in place.

3.3.12 Review:

It was disappointing to see little in the Strategy about review. The Strategy now needs to be supported by a detailed implementation plan and a formal review date needs to be set. We would suggest that this takes place in three years time. However, specific points will need to be reviewed prior to that date, for example, the impact of the end of ring-fencing on the commissioning of HIV prevention.

We would also suggest that a multi-disciplinary team is set up at national level to oversee implementation and to iron out problems as they arise. This group must be formed of representative organisations and bring in a service user perspective. It should also work to ensure that the implementation of the Strategy is carried out in a transparent manner with use made of existing networks and fora such as the English HIV Policy Forum.

May 2002

Current Consortium member organisations:

African Community Involvement Association (ACIA)

Blackliners

Bromley CAB

Camden CAB

Cara

Chalk Farm Oasis

Food Chain

Globe Centre

Harbour Trust

Healthy Gay Living Centre