Feature

Mainstreaming or sidelining?

As the ring-fence around funding for HIV/AIDS services comes down, Neil Small asks whether the benefits of mainstream funding will outweigh the risks

The first response to the HIV and AIDS epidemic in the UK followed a realisation among gay men that something was happening in the USA, and increasingly within the UK, that would not just go away. Self help, peer group support, the dissemination of information and subsequently establishing organisations to meet the needs for both prevention and care followed. All this occurred in an atmosphere of obstruction and hostility from many quarters.

Later, when the British government decided that HIV and AIDS required a constructive response, official policy emerged in two areas. First, in the autumn of 1985, some health authorities were given a small extra financial allocation specifically to respond to the emerging needs associated with HIV-related conditions. They were also told to divert some funds already allocated to other services. At this point it was hospitals in central London which were experiencing most demand. They were clear that this demand was exceeding available resources and that extra allocations were not sufficient. Second, and linked with prevention, in November 1986 the Health Education Council was replaced with the Health Education Authority. The HEA was given a specific remit to develop responses to HIV.

Subsequent public policy has been constructed around the two agendas of prevention and care. The HEA took the lead in government prevention policies. This part of its remit had become increasingly submerged in wider concerns. The history of the HEA was characterised by interesting innovation followed by perhaps politically inspired woolly compromise.

Financial allocations to HAs to develop HIV-related services were in the form of annual ring-fenced money. Other money was directed in the same way to local authorities. Specific voluntary sector organisations received a recurrent grant. In general the size of allocations was proportional to population, after some adjustment for the known incidence of HIV and AIDS.

Complaints centred on the extent of this ‘incidence adjustment’, with inner London authorities continuing to feel disadvantaged. In 1991-2 the regional health authorities’ budgets, when related to the number of people known to be living with AIDS in each region, varied from £305,263 per person in Mersey to £30,180 in South West Thames.¹ A division between prevention and care is evident: regions with high care needs do not have as much to allocate to prevention and regions where the incidence of AIDS is low have proportionally more to spend on prevention. Three of the Thames regions have the lowest spending on prevention compared to the incidence of AIDS in their areas. Trent region spent 19 times more than North Thames region on prevention per new AIDS case.

The nature of the epidemic so far points to transmission among groups that share common characteristics; much transmission goes on in circumscribed geographical areas — people share needles and have sex with those who live close by. It would make epidemiological sense, therefore, to spend lots of money on prevention in those very places where incidence is high and demands for care resources are considerable.

The policy of making specific allocation for HIV and AIDS to HAs and LAs is now being ended. As with other areas, the future sees the ring-fence coming down. HIV and AIDS funding is being shifted into the contract culture of the mainstream.

Is this a good thing? It depends on how far services sink or swim, or how far the mainstream itself is enriched by HIV and AIDS-inspired innovations. These have been most notable in the self help and voluntary sector, but also in some areas of professional practice — for example in drug-testing protocols and in methods of social research. Many innovations have been constructed around new ways of empowering service users.

Barriers between HIV services and other services involving sexually transmitted disease or drug use have been broken down in many parts of the country. All concerned would benefit from such mainstreaming having an even wider impact. Likewise in palliative care, both in the community and in hospices, there is much scope for fruitful interchange. It may be that mainstreaming AIDS care will allow for reciprocal contacts with many areas of infectious disease and with conditions that also suffer social stigmatisation, most notably cancer.

That is the optimistic reading. The alternative scenario is to see the move into the mainstream as a route leading to the erosion of those quality services already developed in some areas and to a further marginalisation of HIV and AIDS services in those places which, as yet, have not built up a substantial prevention or care portfolio.

HIV and AIDS only got on the agenda after a fight. An often uneasy alliance between those touched personally by the epidemic and some clinicians and researchers was eventually successful in winning recognition and funding. The significant shift occurred when politicians saw the likelihood of a growing epidemic in the heterosexual population. This galvanised them into action. Initiatives in social policy and medical care have often occurred from a fear of inaction, not from a recognition of the benefits of action. Identifying such negative motivation is important because when the pressure is off there is no incentive among reluctant converts to maintain the levels of service achieved.

There are two ways of looking at the current extent of HIV and AIDS in the UK. The first is to say there is a substantial and growing problem, increasingly evident in many parts of the country. It is fair to assume that much of the problem is hidden, with people not knowing their HIV antibody status. Transmission routes are well known, as are the ways to minimise risk, but in many sectors of society this knowledge has not been translated into behavioural change. Advances in treatment mean that more and more people will be living with AIDS for longer periods, who will require both inpatient treatment and meaningful care in the community. The world-wide epidemic is staggering both in its extent and its implications.

The second view is to say things are not so bad, either in absolute numbers, rates of increase or in the characteristics of those people living with HIV and AIDS. We have other problems, this one has received too much attention and support and it must now take its chances with all the rest. Much of this argument was summarised in a recent article by Craven and colleagues. They listed the many different predictions that had been made about the likely totals of people with AIDS. The actual cumulative total of registered cases in England and Wales up to the end of 1992 was 6,929. They contrasted this with 22 different predictions made in the previous few years by a wide range of individuals and organisations. These predictions varied: 34,077 was the top marker; six predictions were in the range 20,000-30,000 and 10 in the range 10,000-20,000. Only one estimate was under the actual figure and that only missed by 729 cases. The same article identified a cumulative total of people with AIDS in the UK who, official figures presume, contracted HIV via heterosexual intercourse with a partner not in a defined risk category. Up to the end of 1992 the total was 34 men and 29 women.²

Recent policy changes have meant that funds have been taken away from established HIV and AIDS charities (see healthmatters, issue 17). There is continuing hostility to people living with the virus. HIV and AIDS disappear from the policy agenda for long periods of time and there is an absence of sustained preventative campaigns. It is not hard to imagine policy-makers looking for reasons to cut funding. They may use articles purporting to show over-funding of HIV and AIDS services in relation to both need and allocations to other areas of healthcare to reinforce the residual combination of indifference and hostility towards this epidemic and the people who suffer from it. The result will be sidelining rather than mainstreaming.

At the sixth International Conference on AIDS in 1990 one speaker pointed to the challenge of the future remarking that ‘what might be suitable for a crisis does not always persist for the siege’. Services in the UK enter the siege with little protection. The removal of ring-fencing will leave them at the mercy of the commissioning process. There have been few managers so far who have acted as champions of HIV and AIDS services.³ The odd clinician has held out for quality and the pressure groups have been determined but the opponents will be formidable. We do not know the size of the epidemic in the UK or, for certain, its likely pattern. We do know that here, as elsewhere in the world, it will continue to be around and to claim lives into the next century.

This is not the time to accept that HIV and AIDS services have had ‘too much’ and should have less. Instead, the alternative is to say that mistakes have been made and the unequal distribution of per capita spending is a cause for concern. In some parts of the country, where the known incidence of HIV is low, ring-fenced allocations seem to have been spent on personnel, with little thought as to what they could achieve. But much has been learned that could be useful elsewhere. That the epidemic is not as great as was projected is something to do with poor projections but it is also to do with the impact of work done by individuals, self-help groups, the voluntary sector and by health and social services.