Ethical dilemmas in professional practice in anthropology
Policy - environment - development
Worked example 1: HIV/AIDS in Lothian
Interview with an HIV/AIDS advisory committee
This page reproduces an interview between Dr Guro Huby and a member of HADSAC - HIV/AIDS Drugs Advisory Committee - an organisation which makes decisions and recommendations about funding of services for people with HIV in Lothian. Again names of hospitals, care centres and staff have been changed to ensure anonymity.
Q. To provide some background information could I ask you to give a brief history of services of HI V in the region, an outline of the structure of planning and management of the services, a brief explanation of how the recent changes in the organisation and limited funding affects the work of your team, and finally give a brief description of the present situation and how you hope this research might help you? So if you could start with a brief history of the services.
A. The problem with the development of services in Lothian was that there was no strategic planning involved because we very suddenly found we had a problem here, services developed in what was a fairly haphazard way in response to this huge problem that we discovered we had virtually overnight. So whether it was care and treatment services or prevention services they were often funded because somebody had a good idea, went to the health authority, social worker or the Scottish office and said 'I have a good idea. Can I have the money for it?' and, by and large, a lot of these projects were funded. In spite of that in fact the services are reasonably coherent in the way that they have developed with a balance between trying to prevent the disease spreading and in treating drug users, and caring for the people who are already infected. So we have widespread services, whether that is hospital care, care in the community, statutory organisations both for drugs and HIV, etc. but I would have to confess that they were not particularly well planned, they developed because there was this huge problem and because we were able to get money for a while in the 1980s.
Q. What happened then, how was this need for strategic planning developed? How did the structures for this planning come about?
A. Well, really in a fairly haphazard fashion, and largely shaped by in particular our AIDS coordinator-consultant psychiatrist who set up our problem service and people like H K at the X Hospital, trying to find some coherent way of planning. And in fact sat round the table for a year with what was then the AIDS team led by the AIDS coordinator trying to build a strategy for HIV in Lothian. The problem was that by that time a lot of the organisations that I have described were already in existence and it was difficult to strategically plan properly rather than just describe what was already in place, because obviously when you are trying to make strategy you don't want to start throwing out all the things which have just been developed. So we did not actually get a strategy until 1992 - I think it was published. And to a large extent that did actually describe what had already happened, as well as trying to hold onto the future of it. And there were a variety of other bodies. We had so many different committees over the years I can hardly count them; things like the Lothian AIDS forum which anybody at all concerned with HIV and AIDS in Lothian could attend, and very often was a complete rammy, with people arguing to HAMT, the HIV and AIDS Management Team - which had representatives from different organisations, largely the non-statutory sector - rather than the care and treatment services. But again because everybody was fighting over money to a certain extent and wanting to develop their own service, we were not a particularly successful committee at decision making, so over the past few years, a couple of new committees were developed, one which is particularly helpful is HADSAC on which I sit and the other which was the purchasing advisory group where health and social workers met and talked about the projects which they wanted to jointly commission.
Q. Could you tell us a bit more about HADSAC. What are its powers, its responsibilities? Who sits on it?
A. HADSAC is purely health and public health medicine, who advise what are now the commissioning team at Lothian Health, so the commissioning team themselves sit on it. And the Advisors, when you talk to them are myself and Dr. T - who works at the X Hospital, a GP who is well known for working with HIV and drugs in Lothian and a consultant from genito-urinary medicine. We talk about the issues that are coming up, and we advise them about what would be and would not be a good idea of what they should buy in terms of services. The biggest change in the last few years is that that was fine when there was money around to spend; it becomes very much more difficult when you've got a shrinking pot of money, which is what has happened over the last year or two anyway.
Q. And is that general? Is that the services generally or just HIV and AIDS?
A. It's a bit of both. The health services are being asked to save 2% every year and on top of that we have been asked to save; in some areas somewhat more than that. And the problem is that increasingly it is higher than projected, so we are often having to find 5% or 6 % savings, which is a lot when you are talking about a lot of very small projects, and this year two have gone to the wall.
Q. You say that the committee you sit on deals particularly with health. So, who deals with social care?
A. It is not that the purchasing advisory committee does not pick up on the social care, it does. But in fact there is a reasonable balance with joint commissioning between social work and health in that both issues are discussed at both of these committees, but the social care more on the purchasing advisory and the social workers represented there.
Q. Now if you make a decision in the HADSAC is that binding? Who makes the final decision about what is to be funded?
A. The final decision is made by the commissioning team. They are advised both by ourselves as service providers and by public health medicine who are doing needs assessments. But the people who actually make the decision are the commissioners and finally the health board itself, and they can return decisions that are made at any of these committees and have done so in the past, only it's a reasonably rare event, and usually only it happens it is when there are political sensitivities about the decision.
Q. And what about social care? What kind of powers does the Advisory Group have?
A In one sense I would say none, because they are advising, and it is the directors of social work who would make the final decision about whether or not something is purchased for social care. But, again, they would normally listen reasonably to what the committees are saying.
Q. Can you talk about how recent changes and not so recent changes in the organisazion and the funding of health services is affecting your job on the committee?. I am thinking about the introduction of the internal market and conflicting...., the taking away, the ringfencing, of AIDS money and the local reorganisation of local authorities.
A The funding situation went from health boards, having to find money for this new problem in the mid 80s to the situation where the money came ringfenced from the Scottish Office in the late 1980s. We made an unfortunate mistake in the early 90s by counting the number of people who were HIV positive and trying to clean up our act. In fact an AIDS coordinator was responsible for that excellent piece of work.Unfortunately the funding came dependent on the number of AIDS cases we had and because we cleaned up our register and stopped double counting people we lost quite a lot of money at that juncture. It's no longer funded on that basis; there's a very complicated kind of funding formula now whereby, here, treatment services are ringfenced at health board level, that is they have to spend it on HIV services but it is not ringfenced for instance for hospital care, for drugs, for psychological services so money can be moved around within those categories. Prevention services are still ringfenced at the Scottish office which is making life very complicated, because some services are, of course, not just clean treatment or just prevention, but provide a modicum of both. My own service is a particular example of that and over the past two years we have been subject to the same kind of savings that the rest of the health boards have to make on other services, so that 3% year on year is having to be saved. I suppose that in terms of purchaser provider split, the main difference was that it felt as if we were all working for the same aims before. And it is apparent from the discomfort that some of the purchasers are having (some of us providers on the committee) that their task is to save money and our task to provide the caring treatment for patients but it feels as if it is much more about money and much less about the patients these days. And that's because the health board themselves are finding it very difficult to make these decisions in an economic climate where there is less money around. Do you buy hip replacements or do you buy AZT for somebody who is HIV infected?
Q. I would like to pick that up later. Would you say that the reorganisation of local authorities is affecting your work at all?
A. It's early days, but I would say it's very likely because most of the services we were providing, still provide, are Lothian-wide but with the new organisation our funding which goes six parts to Edinburgh, two parts to West Lothian, one part to East Lothian and one part to mid Lothian means that where before Lothian region bought all these services, although Edinburgh district still wants to buy the services, East, West and Mid Lothian, we feel that HIV is much less of a problem for them are much less willing to put money in to this problem. So, projects like Manstone house the hospice and the links project, which is a drug rehabilitation project, have been told that they will not get 40% of their money from the outlying areas of the region as opposed to Edinburgh and that has obvious huge implications in terms of being able to keep them open and certainly....
Q Is there anything you can do about that?
A. We are trying very hard to build up relationships with the new local authorities, to try and persuade them that yes they do have a problem and that they should continue to put this money in but they obviously do have different priorities from Edinburgh district and it is true to say that the vast majority of people with the HIV infection are living within the Edinburgh boundaries and they are not living in these outlying areas. So I can understand that their priorities are different. But where everything was funded on a regionwide basis before, it is going to cause enormous problems.
Q. Could you, in conclusion, say something about the present situation that faces you in making decisions about services and how you hope, (f a sales product can help you make these decisions, what are the demands on the services you see? How can you weigh up one demand against another? In other words how do you set your priorities?
A. I think that is very difficult to do and has always has been very difficult to do in committees because, again, partly because of the history of the problem and in fact a lot of money did go into HIV and AIDS in the early days. We do have all these very small organisations which might have quite large overheads, who are running into difficulties and the decisions we are having to make are very difficult ones about whether or not we let some of these organisations go to the wall. One of the other problems is that what is happening to the people who are infected is very unpredictable so that, for instance, we predicted a few years ago that if a particular drug was used to stop people getting TB it would cost millions; in fact that drug never materialised as a reality. We also predicted that hundreds of thousands would have to be spent on AZT but then found that the patients did not want it. At the moment we are predicting that the combination treatments that are new and under trial are going to be very popular because they are very much more successful in combination than AZT alone and again, it is likely that that is going to cost hundreds of thousands of pounds in the next financial year. So one of the things that we would like to determine is what the customers themselves want. I mean, are they going to want to uptake these new drugs and if you give them the choice between counselling or a drug, which would you prefer? I'm not sure how easy it is going to be for any research project counsellor to answer questions such as those and of course those are not the only questions to be answered but it would be nice to get something tangible. But there are other problems like we had two different hospitals treating the patients which is again less effective than having one centre of excellence. We have two different organisations providing alternative therapies and again it would be much more cost effective if they were under one roof, but, of course, making the decision about which organisation should stay alive and which one should not is very difficult to make.
Q. So how are the decisions made?
A. These kind of decisions tend to be made either at the Purchasing Advisory Group or at HADSAC (where, by and large, the purchasers and commissioners will listen to the advice that we give them because we are working on the ground and have a reasonable review of what the different organisations offer, and we try very hard not to be partisan and to take an objective view. It can be difficult though, because we had, on one occasion, one of us, because of the problem of dementia in HIV, decided really that what was needed was a day hospital and half the committee felt that that was a good idea and half of us thought it was a ridiculous idea because of the nature of the patient - it would be very difficult to get them to a day hospital. So it is not as if we are always unanimous in the advice that we give to the committee.
Q. I was thinking of how and what kind of research evidence do you use to make your recommendations?
A. Well at the moment the main tool we use is looking at our HIV register which tells us year on year who are the people who are becoming newly infected and which people are getting AIDS and how people's immune systems are functioning which gives you some ability to predict what is likely to happen year on year and how many deaths there are. So at the moment we know that there are about the same number of people coming into the system newly affected as there are deaths, so that the population itself is reasonably stable. We also have to take into account other research studies, like the anonymous studies in GUM clinics and amongst drug users which gives us some kind of clue about how many people are out there infected but not knowing it. So, we know, for instance, that most of the drug users have come forward to be tested. That is not true of people who have heterosexually acquired HIV or through gay or bisexual sex.
Q. So, that's all demographic data. Is there any other research evidence you used, any other studies on consumers' view of the services, evaluation of the services?
A. There was one very useful study carried out which gave us very surprising results in that we had expected it to show that hospitals were very poor communicators with the community. That was the generally held view in the community of course, not in the hospital. In fact, the study, and, the results were quite complex, but it suggested that that was not the case. The hospital was very good at organising services. We also found unexpectedly that the consumers themselves were more concerned about issues such as welfare rights and housing than they were about the virus itself. But that kind of qualitative study has not been carried out. I can only think of one study that has been carried out in this kind of way that has been able to inform us about which way the services should go. Having said that, the study suggested we should do something about welfare rights and we've just made a decision to cut welfare rights so I don't know what that says about the decision making process.
Q. Well, it certainly shows the complexity of the relationship between research and decision making.