Public. Health

(1991), 105, 51 54

© The Society of Public Health, 1991

Health for All--Lessons f r o m H I V / A I D S Reflections of a Jobbing Public Health D o c t o r Joyce Leeson Department of Pub/ic Hea/th Medicine, North Manchester Hea/th Author/tv, Centra/ Drive, Crumpsal/, Manchester M8 6RL

The World Health Organisation initiative 'Health for All by the Year 2000' has laudable objectives, but are they relevant for health care? The history of HIV/AIDS services in one district suggests that the multisectoral participative approach can be fruitful and can contribute to quality services. It is noted that this was demanding in time and effort, and occurred in particular circumstances, and it is queried whether it will be possible for public health doctors acting as purchasers to set successful contracts which achieve the same sort of outcome for all services.

Introduction Two major commitments of public health medicine departments are work on the W H O p r o g r a m m e of Health for All by the Year 2000, and responsibilities for the co-ordination of services for H I V / A I D S . Recently these two areas of interest have become linked in my mind. In Manchester we have identified the key topics of the European Regions 38 targets: Target 1 is to reduce inequalities, by improving the level of health of disadvantaged groups. The means by which this can be approached is indicated in Target 13, healthy public policies, with community participation in policy making, in Target 26 by community representation in health care systems based on primary care, and in Target 18, which describes the need for multisectoral policies involving working with communities. We have a city-wide Health For All Working Party, including health authorities, local authority and voluntary agencies, which reports to the Joint Consultative Committee, and we have produced our own draft targets for Manchester, which are now subject to consultation. However, although the Health Authority is prepared to endorse these worthy objectives, it seems to be difficult for some clinicians to see any relevance to 'real' health problems and health work. In reflecting on this disappointing response from colleagues, I realised that few of the services which we already have which do strive towards Health for All objectives involve doctors to any great extent; it is nurses, health p r o m o t i o n staff, womens' health workers and the like who lead the way, so few doctors have relevant experience to call on. However, there are services which include a wide range of staff, and which have a participative and empowering mode o f work, and which involve intersectoral planning and user group involvement, i.e. the H I V - A I D S services. What can we learn from these? When H I V (then called H T L V I I I ) infection started to be recognised in the early eighties, it seemed to throw down a gauntlet to modern medicine. It reminded us that infectious diseases still have to be taken seriously even in the urban world, and that we do not have

52

Joyce Leeson

vaccines and antibiotics for everything. In particular it brought to the fore the current high prevalence of sexually transmitted diseases (STDs), many of which are not being controlled (and exposed a chronic neglect of the services concerned with STDs). Serious ethical and moral issues present, but not being addressed, elsewhere soon raised their heads too. Patients tended to be from groups already subject to discrimination, e.g. gay men and blacks, and in some places prejudice and fear combined led to refusals to treat and sheer neglect in the early days. Terminology used by some incorporated value judgement which should have no place in health care. Haemophiliacs infected by Factor VIII concentrates were described as 'innocent victims', implying that others by contrast were 'guilty'. How then did model services arise in Manchester against such an unpromising background? In short, they arose through 'patient power' and articulate advocacy, which helped staff both adopt high standards and find ways of reaching them. Very early on, a gay men's health group who made it their business to know more about H T L V I I I than most health professionals did, and to start to exert pressure on health services, focused on the main thing the health service could offer at the time testing. They knew, from what they had read and what friends had experienced, that an antibody test was not just a useful diagnostic tool which a doctor should choose to use if he thought fit. In reality, 'the test' was something which could lead to profound practical and psychological outcomes which the person to be tested should have the opportunity to consider and work through before agreeing to the test. Thus both informed consent, and skilled non-directive counselling before consent was given, were required, followed by further counselling when the result was received. All very well, but who could, or would, possibly do that? The answer was they could, having sought and obtained training for the telephone counselling they were doing with Aidsline; and they would, as volunteers, at evening testing clinics. At the same time similar but larger scale pressures were being exerted nationally on the Department of Health and politicians in L o n d o n by well organised and well informed voluntary organisations, supported by some professionals in genito-urinary and public health medicine and, to the credit of the decision makers, national advice was issued ~ encouraging the involvement of voluntary sector representatives in services and planning groups, thus legitimating the local developments at which some still looked askance. The testing clinic, with its mixture of volunteers and staff who had chosen to work there, came to develop the aspects of quality to which we are now told all clinics should aspire--a friendly welcoming ambience, a cup of tea and an attempt to respond to individual needs. More profound, though, was the underlying ethos of respect for autonomy, consent and confidentiality. The clients, who were often well at the time, were equal partners; when some of them later became ill and were in-patients naturally some of this ethos carried over to the wards, as did the counsellors when appropriate. Prejudices, if any had existed, tended to melt away as the pain that patients experienced from discrimination was recognised. Efforts were made to respond to the wide range of needs that patients identified, including their rights to make decisions about their own deaths, and the needs of their loved ones to take part in their care, and to also receive support were recognised. These processes were moved along by the recruitment of extra staff who were compassionate and in tune with the model, some of them former volunteers (thus depleting the voluntary agency!), and by the response of dedicated existing staff to working within a favourable local and national framework and alongside articulate and effective advocates. Community participation and intersectoral collaboration did work and did make a tremendous contribution to high quality health care for a stigmatised group. Are there other lessons to be learned from this experience? Y e s - - t h e other aim of the

Heahh for All

53

HIV/AIDS services is that of health education and prevention, and here too Health for All principles have paid dividends. Intersectoral Collaboration

A medical consultative group which became the AIDS Forum was convened in Manchester late in 1985 by a Community Health Council secretary, bringing together Aidsline, local authority representatives and a wide range of health service staff. This fruitful setting encouraged the local authority (the biggest employer in the city) to develop and adopt a range of policies on HIV/AIDS, with ambitious objectives to take HIV/AIDS education to every group of local authority staff--from cleansing staff to social workers, and including top managers and councillors. An 'AIDS in Education G r o u p ' was established with health authority and voluntary sector input, and an in-service training (INSET) day organised at which almost every school in the city was represented; a framework has been created which, if resources can be identified to do the necessary curriculum development and support work, will enable successive generations of school children to learn to be able to protect and care for themselves and others in the era of AIDS. Subgroups of the AIDS Forum, which now has two staff, organise the city's needle exchange schemes, and the widespread distribution of condoms, and the F o r u m is a focus for pulling together the HIV/AIDS workers from the various agencies all over the city. Health Promotion

National campaigns certainly made people aware of AIDS, although early ones attracted criticisms for scare tactics and obscurity. Luckily voluntary organisations were already at work, through magazines, clubs, leaflets and posters, giving relevant advice in words people could understand. This caused some offence o f course, as there are no 'polite' words about sex in general use. In addition to concern about the terminology, other moral/ethical issues were involved. Some proponents of health education feel it should largely be comprised of the word 'don't'. Realists take the harm reduction approach: 'if you do, do it more safely' and 'here is something to help you do it more safely'. Community involvement, meaning the involvement of the target community, soon teaches you which approach has any real chance of success. In practice there is considerable evidence, including a marked reduction in rectal gonorrhoe a, that the messages have been understood and acted on by the gay community, who have reduced risky activities. We have learned a lot about working to the Health for, All model in HIV/AIDS, and we feel we have reason to say that it has been productive. The challenges, however, are two-fold. Can this mode of work be maintained indefinitely, as staff change, volunteers burn out, NHS and local authority funds get tighter, and as market forces intrude? And can we produce parallel models of working with less articulate, less organised and less co-operative client groups? Both these challenges are already with us, in the hard times of t h e 1990s, as health promotion for and care of intravenous drug users become more prominent. Some of the tests have been passed, nationally and locally, as the Advisory Council on the Misuse of Drugs 2 has declared that HIV/AIDS is a bigger threat to public health than drug misuse; and we have developed needle exchange schemes and other harm reduction approaches, such as distributing a 'comic' which offers acceptable and explicit harm reduction advice to drug users. Our community drugs team has a non-judgemental, supportive model of work, and is prepared to be advocates for its clients, and the drugs clinic is prepared to be flexible about prescribing. The team has been able to support other

54

Joyce Leeson

services, such as maternity, in the provision of appropriate care for drug users. If the funds last, it looks as though we may be able to claim that the Health for All approach has been used for services for drug users too, up to now. These stories, briefly told, have unfolded over many years, with ups and downs, and much pain and effort from many highly committed people, including myself. The services concerned are small, special and have received earmarked funds for development. Is there any hope of similar successes being achieved more easily and more quickly in the future? We are told that the great opportunity for public health doctors in the purchasing authority will be to demand and specify quality in contracts. Will it be possible to address inequalities by involving communities intersectoral work, and ensuring the creation of quality services like our HIV/AIDS services just by setting contracts? We shall see. References

1. Department of Health and Social Security. (1986). HC (86) 2/LAC (86) 4. Annex B. 2. Advisory Council on the Misuse of Drugs. (1986). Aids and Drug Misuse Part 1. London: HMSO.

AIDS reflections of a jobbing public health doctor.

The World Health Organisation initiative 'Health for All by the Year 2000' has laudable objectives, but are they relevant for health care? The history...
263KB Sizes 0 Downloads 0 Views