Ethical dilemmas in professional practice in anthropology
Policy - environment - development
Worked example 1: HIV/AIDS in Lothian
Interview with a Welfare Rights Officer
This page reproduces an interview between Dr Guro Huby and a Welfare Rights Officer that highlights some of the problems faced by people in the front line of support work.
Q. Could you tell me a little bit about your work in general and how you are specifically involved in helping people with HJV get their benefits?
A. In general, I give advice about individuals through One Stop Shop and that involves one-to-one advice, making claims and also pursuing claims through a tribunal system to the, hopefully, successful conclusion. Within that I have eight hours, and my colleague Peter also has eight hours which is dedicated time to people with HIV. We use that time primarily to run surgeries at the local drop-in centre. We also train professionals to give welfare benefits advice themselves and to start pursuing the claims too. Because, obviously, we've only got limited time and we are not able to cover every individual claimant ourselves.
Q. And can you tell me a bit about how people come to you? How do you get referrals? How do they find out about you?
A. We get referrals from a number of sources. Initially when we started working with people with HIV, several years ago, it was through an individual who came with a poll tax inquiry and mentioned during the inquiry that he was HIV positive and from that we pursued benefit claims for him, and he began to refer his friends. Then we made ../../../../../contact.htms with various agencies. So at present we have reached the stage where we receive referrals from the health board, local charities, voluntary organisations and social work departments.
Q. And when you say the health board do you mean GPs and hospital departments?
A. Yes, GPs, hospital departments, community support workers, district nurses, all those areas.
Q. And can you tell me a bit about why do people need help to get their benefit, why do they need your assistance?
A. Poverty is recognised as one of the biggest problems facing at least one of the groups of people affected in Edinburgh and I think could include all of them. And the social security system has been referred to by Professor Rose Harper as one of the most complicated areas of law in existence in Britain. In fact she said that most solicitors would not even begin to work their way through it, they wouldn't understand it. It's a very complex system and yet the onus is always on the claimant to know what they can claim, when they can claim it and how to pursue that claim. That seems to us to be unfairly weighted on the side of Social Security. For many of the people who are making claims here, they have been affected by poverty throughout their lives, perhaps left school early, became involved in drug abuse, they live in estates where the prospects are not great for them and then they become infected with HIV. Particularly for those groups, the problems as basic as providing adequate nutrition for themselves and their families, to help them fight off opportunistic infections are really crucial. Basic benefit level for a single person over 25 is about 47 a week. You can see from that that it is simply not enough to allow them to protect their health. The problems of poverty are made worse by poor housing and living, as I said, in peripheral areas of the city, travel to the centre to receive treatment becomes an added expense. So there are two things: the bad start people have in life and there is also the difficulty of the system so I think it is essential that welfare rights advice is there, people with expertise in this particular area, to offer advice to the people who are affected.
Professional Practice in Anthropology
Q. You talked a little bit about how poverty is a special problem for people with HJV. Is there any other ways in which your work with them is different to your normal everyday work?
A. Very much so. I concentrated in the previous answer a bit on people who had been infected by drug abuse I should not neglect other communities, particularly gay men, who may have enjoyed, very often have enjoyed, affluent lifestyles and suddenly, when the illness becomes worse they see that going and they see mounting debts, and commitments they cannot meet facing them. And I should have said that for these people nonetheless poverty becomes a problem but late in life. The particular problems related to people with HIV in connection with work. Probably the biggest problem is the length of time, with many clients that we see in the general advice-giving area you are dealing with a problem; you sort out the claim and that is it, you never see them again. With people who are infected with HIV, it is almost inevitable you are going to go on seeing them, just for the fact that it is a progressive disease. Very often people's lifestyles become more chaotic as they become more ill; they have difficulty holding on to regular commitments; they tend to come back with a crisis for years on end. For some of our clients we have been seeing regularly for five years, that is unique, no other client group presents these kind of problems. And the problems are not only debt related, there's Council Tax, Poll Tax arrears, as well as just the everyday benefit claimants.
Q. So, it seems you become quite an important person in lots of people's lives. Does that mean that you communicate and liaise well with other people involved in your clients' care, such as doctors, social workers, counsellors?
A. Well, we would like to think that, but the reality is not like that at all. We do receive referrals from all those people that you have mentioned and we do see the people they refer, but as to regular meetings, liaising and sharing information, no, that does not happen as much as we would like. We are not really invited along to those kind of meetings. People make a referral and then they hand over that part particularly to us. Saying that we do meet individually with people from the groups, we meet with GPs to explain why we ask for the kind of backup medical evidence we do and try and keep the path smooth so that in the end we are helping our clients. We do the same with hospital staff, social workers and so on, but I would say the liaising is not there really.
Q. I also know that the current local authority reorganisation and cuts in funding is affecting your work. Would you talk a little bit about that?
A. Yes, initially funding was cut from a local voluntary organisation a few months ago and they provided a welfare rights service, with support from us. That ended overnight and we took on the commitment of taking those cases that she was working with. So, immediately, our caseload jumped by 30 and I know that sounds like a lot, but, when you consider that Peter and I handle between 200 and 250 cases between us already.
Q. And that is just specifically HIV work?
A. Specifically HIV work, that does not count the general work that we do. It is not actually a high proportion, but it is almost the straw that could break the camel's back because we are already working over capacity within our 16 hours. On top of that with local government reorganisation, the staff from here were cut from 23 to about nine, with one person permanently off on long term sick. To cover the One Stop Shop, the regular case work, appeals, employment law, immigration, all the areas that we did before with about 40% of the staff that we had before. Over and above that Peter and I have to cover all the HIV work, so we have been very severely affected and it is a very gloomy future for us. The reality is that we do it as well as the other work, not instead of, we do not really get those 16 hours.
Q. I also know that there is some dispute about whether the health board will continue to fund a welfare rights service.
A. That's right, we thought that when the voluntary organisation had to close down, that the hours that the health board were funding there for the welfare rights work could possibly be transferred to our department and that Peter and I could take up those extra hours and perhaps have someone in covering the time we could not offer to the ordinary service. However, it appears that that is not going to happen. The health board do not perceive a heavy enough demand on our service to need that kind of work being done.
Q. And how do you think the health board could be convinced of the demand, that kind of argument? What kind of evidence would they be looking for?
A. Well, I am not sure what they would be looking for, but certainly I think that the best way to make our case to them would be to simply stop dealing with the cases they refer to us, to stop taking referrals from nurses, from community support workers, from GPs, from hospitals, we simply have to say to them, I am sorry we can no longer take a referral, we can no longer go and see this patient of yours, you are going to have to do the welfare work yourself. I think this is a powerful way of showing them that we can no longer just keep on taking on extra work. Unfortunately, it affects the clients and that is the very last thing we want because health board workers are under stress themselves, they are overworked themselves, and to take on welfare rights on top of their other roles would be quite impossible. In addition we have not been able to give health workers the kind of training we would have liked to bring them up to speed so that they can do the basic welfare work on benefits work themselves and many of them are not in a position to do that themselves.
Q. So, there is an uncertain future for the work of benefits work in this field. Might there be a role for a research project to uncover that area and make the needs known?
A. Yes I think you are right I think there is a very uncertain future for Peter and I from our point of view, a very gloomy future. All we can see is work piling up and no recognition. And I think that is one of the most galling things for us, that it would take a research project to identify that we actually do anything for many of these agencies. It appears that no one thinks that we play any role at all. Yet I am quite sure if you asked people in this area who are affected by HIV for a name that they recognise, Peter's name would be the first one that they give.
Q. To conclude this interview, could you tell me a little bit about in your experience, which groups of people with HIV lose out on services at the moment?
A. Normally, I think people from the big groups who lose out on services and maybe have an image problem, are people who are affected through drug abuse. It is not trendy, it is not sexy. You can't go about and march along Prince's Street on National AIDS Day waving flags saying "I'm a Junky and I'm proud of it". It doesn't work like that. They are a hidden group of people. If people with HIV are stigmatised, then they are doubly stigmatised. They are a very demanding group of clients, they are popularly seen as a demanding group of clients, but they are affected by an awful lot of extra issues, and poverty, as I mentioned earlier is the biggest one. It's very difficult to maintain your health anyway. It is doubly difficult if you don't have the money to buy the things that can help you do that, or the money to move house to an area where you would feel more comfortable. I think, as well as that, in my experience, women and couples who are affected by the virus, are losers all around. They so often fall into the role of carer even though that may be their role they get very little recognition of that, there doesn't seem to be any respite, particularly much of the load of caring for the family, looking after the family finances, keeping the family on the straight and narrow in a healthy state falls to them, the care of the children falls to them, and there does seem to be very little recognition of that.
