THURSDAY 12 DECEMBER 2002

DR SIMON BARTON, MR SIMON COLLINS, MS RUTH LOWBURY, DR ADE FAKOYA, MS CHRISSIE GREEN AND MS HEATHER WILSON

  680. There are some places where you have to wait four weeks to see a consultant.
  (Dr Fakoya) You are absolutely right that nobody is going to write or make a protest about how bad things are at the GUM/HIV service. Going back to the point that this is a priority and those who have the voice, either on behalf of patients or constituents, need to make people aware that it is a proper priority. One of the things for me and for other clinicians at the front line is that we often see changes in the epidemic before they hit public health reports. We do see individuals whose only risk is to be sexually active within the UK, born and bred here, or HIV positive. We do see individuals from India who are HIV positive. We are seeing the changes. What we all know is going to happen is that things are going to break down further down the line. We have done almost everything we can do as a clinic to see more patients. We have cut appointment times to levels which are unsafe, we have double-booked appointments, we have multi-disciplinary working with nurses, yet still, whereas three years ago we had a new patient rate of seven per month, for the last two months it has been 20 new patients a month including pregnant women. At some stage somebody is going to have to stand up and say this needs to be made a public health priority again, be that by turning the clock back and ring-fencing monies or be that giving strategic health authorities the power to make the PCTs spend part of their budget on sexual health and HIV services.

  Chairman: I was thinking yesterday when the announcement was made on foundation hospitals and this idea of empowering the community, involving the community, how we could have a situation where people who use sexual health services could come out and say "I'm a syphilis sufferer, vote for me to get on the foundation hospital board"? It is absolute nonsense. How do we empower such people and as a consequence of that empowerment drive forward some fundamental changes? In a sense I am thinking aloud but it is an issue we are all wrestling with within the Committee. I am not asking for some brilliant answers but go away and think about it.

  681. I have not had a chance to read this because it has just been placed before me but I have looked through the summary and it answers some of the questions I was going to put and it will now go into the evidence. When Nick Partridge of Terence Higgins Trust was before us, he was talking about the monitoring of performance and the Service and Financial Frameworks and he made the point that sexual health is not on the list of "must-dos" in the SAFs. You have now given us this piece of evidence which says that more than one in four PCTs have not included sexual health and HIV in the Service and Financial Frameworks. It is very useful evidence for us in relation to the question Julia was asking on how it was going to be monitored. May I come on to the money issue? Clearly one of the biggest cost pressures is the drug budget. You have indicated that because of those pressures money is likely to be diverted from other GUM services because of that. I note here that the Terence Higgins Trust in their survey say over one third of respondents said that restructuring had had an impact and there is an increasing number of reports that PCTs threaten to restrict access by only paying for services provided locally, which is perhaps an indication of that impact upon GUM services generally. Would you like to say what impact the funding of that overspending on drugs will have on the rest of GUM services?
  (Dr Barton) It is where that overspend lies. The previous arrangements, prior to the formation of the PCTs, were with health authorities who year on year had a risk sharing arrangement, not just between themselves and their provider units, but across London. So the evening out by the very experienced finance directors in health authorities in London made the system work because there were quid pro quos. I have nothing but admiration for the way year on year, when there were big increases in expenditure, they evened it out. There there was proactive discussion. We would be at the health authority in May discussing the problems for the year ahead. Thought was going in. Four years ago a number of chief executives wrote to Tessa Jowell who found another £27 million to support the HIV antiretroviral drug budget for London and there was an announcement about extra money being found. Doctors and managers working together, horizon scanning the problems, looking at the problems and raising them. The question at the moment is that even if we could do that within each PCT, and believe me with our local PCT we have tried, who would we then raise it with nationally? What is the strategic health authority? Where is their reserve in order to support this money or is it the DSHC and where are the priorities for those individuals? Yes, there is a drugs budget pressure. Every time ten more people start treatment you add another £100,000 to your drugs budget and somebody has to find that. It is an open access service. If you follow British HIV Association guidelines and good practice and regularly audit the people who are starting within those guidelines, we as clinicians are fulfilling the good prescribing criteria. The problem is arguing about who is going to pay the bill. We are trying to say to people that there are some big bills coming, but at the moment it is finding somebody who is prepared to listen and take responsibility; the earlier point about finding a named person who has some authority and some responsibility between the strategic health authority, the consortium, DSHC and indeed the department.
  (Dr Fakoya) It is clear for a number of different units that the amount of HIV and the expanding numbers and the primary drug budget have an effect on our ability to see patients with other sexually transmitted diseases. Part of that is the immediacy. If you see a woman who is HIV positive and pregnant, she has to be seen; there is no issue of a wait otherwise that child is going to be born positive. Part of the issue with sexually transmitted infections is that a major part of what you have to do is to go looking for them. You have to have outreach clinics and partner education and contact tracing to pick up on them. As the HIV workload expands, you will find that many of the clinics are failing in the other parts of what they need to do. The other point to make is that where HIV and sexual health are identified as a problem within a locality such as Newham or Chelsea and Westminster being able to negotiate some way with your PCT is possible. In areas where the prevalence is much less, in lower incidence areas, the issues are much greater. We know for example, that if we look at the uptake of ante-natal testing services in lower incidence areas, it is a lot less than in areas where people are aware of the problem. It is a dual edged sword really. Not only are the pressures there, though in smaller numbers, but the services which are available to cope with those pressures are fewer.
  (Ms Lowbury) I do not actually have an answer to the question, but I should like to throw something into the pot. I would say that it is not only the other GUM services which are potentially affected by the increasing drugs budget. We must not forget that HIV care comprises more than just the drugs. If people are given the drugs without the support they need to adhere to treatment, to get the social support which enables them to manage what can be a very difficult life keeping on those drug regimens, the treatments themselves will not be so effective. It is important that the budgets allow for the maintenance or expansion of those support services. The other thing is prevention. If commissioners have a pot for HIV, that pot should allow for adequate investment in prevention of new infections as well as the treatment of the infections which are already there. It would be very easy, because prevention initiatives, particularly with hard to reach groups, can be quite challenging pieces of work to fund. They demand quite a level of expert understanding and a willingness to deal with the sensitivities of targeting groups which may be stigmatised. It would be only too easy to drop the funding for those initiatives and that would be extremely short sighted. In the longer run there would then be more cases and even higher drug budgets and it would be an ever increasing spiral.

  682. Does that apply to STIs generally? If you are delaying access for people with STIs, not only will they be infective longer and creating more infection, but potentially the costs at the end of the day of the consequences of non-treatment or late treatment could equally be serious.
  (Ms Lowbury) Yes; absolutely.
  (Dr Barton) Yes. The point you raise is important because within the stocktake much of the outcome of the call there was "Give us openness about where HIV monies which had previously been ring-fenced are being spent". It was absolutely clear that for many health authorities in the late 1990s the additional money they had after they had spent their money on treatment and care was being spent to support genitourinary medicine and sexual health services, which was seen as a reasonable expenditure. As the drugs budgets have gone up, the pressure is there not to have any money left to do that. The lack of development in genitourinary clinics has been shown by the fact that recently the Department of Health have had to give the small amounts of money directly to the treatment centres to avoid it going into HIV drugs budgets, either within the trusts or within the PCTs. It has been clearly recognised at Departmental level that disbursing money directly is the only way to avoid it being swallowed up in the drugs budget. That is what is going to happen locally and there is a huge tension between the ever-increasing budgets and the provision of sexual health services, because in the main they are very directly related, as you say.

  683. If there are no adequate commissioning procedures in place to ensure that individual trusts have adequate funding for antiretrovirals, what system should be in place to ensure that there is?
  (Dr Barton) There needs to be more sophisticated planning between those whose responsibility is to plan the funding and those who know what drugs are coming through. It is obvious to say that no HIV related drugs have been considered by NICE. There are no guidelines other than that the British HIV Association are issuing excellent guidelines. Other than being mentioned in documents as being valuable, they do not have the Department of Health stamp on, so when we follow them we do so because they are nationally agreed by all the clinicians and it has been mentioned, but where is the stamp on the front saying this is what must be supported? If you prescribe along these guidelines you have to find the money from the budget.

  684. There is no NSF, there is no mention in the "must-dos" in the SAF and there is no NICE.
  (Dr Barton) Yes, but we are holding it together.

  685. We have heard quite a bit of evidence to suggest that people who could best be described as on the margins of society are disproportionately affected by HIV/AIDS. Are you actually confident that all those who need treatment are accessing it? If not, which groups are not accessing the treatment and how can we reach them?
  (Dr Fakoya) I am confident that all the people who need to access treatment are not accessing it. There have been several initiatives to try to reach the more marginalised community groups. That involves clinicians and voluntary organisations working together in terms of outreach programmes, in terms of community education and community involvement, involving the various communities which are affected by HIV, be it the gay community, be it the different African communities. You have to remember that the UK epidemic quite closely mirrors the global epidemic in terms of the incidence. If you look at the incidence in Africa over the last five to ten years, where you have seen an increase initially in Uganda and southern Africa and now west Africa, that increase is now being reproduced in the UK and those newer communities are much less able to deal with it in terms of having a community awareness of it, being able to discuss it openly and also being able to have community groups. One of the communities which has recently increased in East London is the Somali community—not wishing to stigmatise any particular community. Although some groups are being developed for them, as a community, for a lot of reasons they are a lot less able to understand what is going on and have mechanisms in place to deal with the epidemic.

  686. Is there any reason why women are less likely to come forward or any evidence for that?
  (Dr Fakoya) Because we have been so successful in terms of ante-natal testing, women are picked up via that route. The figures suggest that quite often it is the men in various communities who have problems accessing services. To date we are not entirely sure why that is but there have been programmes specifically targeted at different communities.
  (Ms Wilson) We all know that men do not access health care as readily as women anyhow. It is partly to do with that, but also I have found working with the ante-natal testing programme, I have certainly seen a couple of examples myself anecdotally of women who were tested ante-natally two years ago and been negative, gone away, no problems, come back this year with a second pregnancy and been positive. What was missing was that their husband or their partner had not been tested at any time. Ante-natal testing cannot take that into account. You have an over-stretched service, you have a midwife-led service and often the HIV test is just part of the routine booking blood tests. That is a training issue which needs to be looked at for midwives. If you have a woman accessing a service and they are seeing a health adviser as someone who is looking at the partner notification issues, you can test the partners and hopefully prevent that happening.
  (Ms Lowbury) There are two particular marginalised communities which I think it is worth highlighting in answer to your question: asylum seekers who are dispersed and people in prison. One of the things about HIV treatment, and I am sure Drs Fakoya and Barton can say more about that than I, is that once you are on the treatment it is very important that you stick to the treatment, that you adhere, that your progress on the treatment is monitored and that there is continuity of care. We have certainly heard through people feeding back to our project, both in relation to asylum seekers who are moved very suddenly and prisoners who may be transferred from one prison to another or released into the community, that their treatment is not continuous, that the notes may be lost, that there are gaps where their regular clinicians do not know where they have gone, all of a sudden they have disappeared, they have no way of passing on the information about the patient to make sure the treatment continues at the point to which they have gone. In purely clinical terms, those two particularly marginalised communities need support to be able to continue their care once they have already started to access it.

  687. May I pick up on the prisons for one moment? My understanding is that if you are on treatment it needs to be taken very, very regularly. I am probably making wild assumptions here, but I would have assumed that the prison lifestyle would not make that very easy. In fact if somebody were regularly taking medication, there would probably be quite a lot of stigma in the prison community, which would mean that people were less likely to take their medication. Is there any evidence of that or am I just surmising wildly here?
  (Dr Fakoya) In actual fact the evidence is quite the contrary. There was a study in America which showed that the people in prisons did a lot better on their medication, highlighting the importance of adherence. They were in prison but they were given their medication and their levels of virus in their blood and their CD4 count were higher than people who were not in prison.

  688. Was that a particular prison which was making an effort or is this general?
  (Dr Fakoya) A number of prisons. I take your point that if the service and resources are not there it is quite difficult. I am not very experienced in prison work although I have had a number of individuals who have for various reasons been put in prison but it has been quite difficult to continue to provide their care.
  (Mr Collins) Access to care in prisons depends almost entirely on the interest of the prison officer who is responsible for the prisoner. There is a huge inequality of access to care in prisons.

  689. You would say that it is a very variable picture in the UK.
  (Mr Collins) If a prison officer takes a particular interest in order to ensure that person has care, then they will get care and if they do not, they will not.
  (Ms Green) I would go along with that. I have actually just had one of my patients taken into prison and he was a number of days with no drugs available. He did not have them with him, so there was a delay. The prison nurse phoned us and we were able to tell them what regimen he was on. They did not have it immediately and had to send to the hospital to get the regimen, so he was about five days without his medication at that point. Once he had it again they were able to dish it out at the correct time, but in a way the onus was definitely on the patient to disclose his status in the beginning, which might not always be an easy thing to do, and then he had to go and get the medication. That was another stigma.

  690. Prisons are an area we have not really touched on and it is important that we do look at it. The prison health service has been formally linked into local PCTs in a way which was not the case previously. Have you seen any improvement in this area of health provision as a consequence of that more formalised relationship at local level?
  (Ms Green) No, not personally. My only experience was with that one patient.
  (Dr Barton) We have run a clinic service at Wormwood Scrubs prison for the last decade and I have run the clinic on many occasions. It is an uphill battle as an outside healthcare professional to work in the prison system. You are utterly dependent on the prison staff for their interest and goodwill. For many of the people who have been referred to us, either with sexually transmitted infections or for HIV testing, it has been a particular prison officer with a particular interest, who has just done a course or who is new, who has brought their personal care to bear to bring somebody forward and say "it will be all right, it is just between you and the doctor, it is okay." A lot of that good work has been on an individual prison officer basis. We have not seen any change with the new arrangements, but are very hopeful that will lead to some developments. We know that the prison doctors, medical and nursing staff are as overworked as anybody and with as little continuity. Our problem is that when someone is on HIV treatment and they go to court and then go to another prison, the medical records can take ages. It is often a case of the individual clinician phoning a person they happen to know from a local GU clinic who does the clinic at that hospital and telling them about the person you think has been transferred to them before the prison system catches up with the patient. There is no electronic database of prison medical records, which would make life so much easier.

  691. I am curious. The Chairman represent Wakefield and I am the Member of Parliament for Belmarsh. You have identified a number of areas. There is the service available in the prison. Then there is the problem of transfer from prison to prison and from the community into prison and prison into the community. You have highlighted some of the problems. Is this written up anywhere or is there anybody you can recommend to us from whom we ought to seek some evidence?
  (Dr Barton) There are several genitourinary physicians who work in prisons who have taken a lead through the Association of Genitourinary Medicine to form a group and I believe had a summary report. I shall be very happy to give you details of that group.

  Chairman: We may wish to follow that up. If you have some information, that would be very helpful.

  692. I have just been passed a note which says that the American prison study was a large well-funded study which was effectively a clinical trial and monitored by external people. I suspect that concentrates the mind and it was perhaps not typical. Does anybody want to comment on that? Certainly this is an area which is new to us and I should certainly welcome more information, as I see no reason why, particularly in a remand prison where somebody is effectively still innocent . . . I am digging a hole for myself here. Assumptions are made about prisons, services are poor generally and this is a specific issue. Are you aware whether there is a general training or awareness programme for prison officers?
  (Dr Barton) Yes, there is.
  (Ms Green) Yes, there are.

  693. Is it a "nice to do" or a "must do"?
  (Ms Green) I am not sure about that.

  694. I want to focus on the voluntary sector. Mr Collins, in his opening introduction, pointed up the difficulties which some voluntary sector groups have in existing, in terms of living from hand to mouth and not having any security of funding. We certainly found, particularly in relation to our inquiry into mental health, the importance of security of funding. We also had evidence again from Nick Partridge at the Terrence Higgins Trust about the impact of the disaggregation of county councils, when individual district councils opted out of funding fairly crucial voluntary sector groups. What is your experience of the relationship between the voluntary sector and the NHS in terms of HIV/AIDS, in terms of service provision? Do you feel that voluntary services, and in particular those for BME groups, may be under threat from HIV/AIDS commissioning powers being devolved down to the PCTs?
  (Mr Collins) I guess the brief answer is yes. If you are losing any specialist commissioning which included support for voluntary organisations then there is a concern whether those organisations which used to receive that funding will continue. A number of organisations will disappear very quickly as a result of that. My own experience is that we have never actually been able to access any of this funding in the first place, so we need to continue fund raising from another perspective. I also say that all voluntary work, or certainly the work we are involved in, provides all this information and educational material free to NHS doctors, healthcare workers and involve clinics throughout the country. That is taken on the basis that it is easier for us to try to pull together a bit of money for some cheap printing and to provide it free in order to guarantee that access to information than it is to try to contact 100 health authorities or 300 PCTs. Yes, there is a real concern among community groups that they will lose that proportion of the funding they will rely on.
  (Ms Lowbury) I would agree. A lot of what I was saying earlier about the importance of not forgetting the services which surround the drugs relates to the services the voluntary sector provide, whether it is in terms of social care and support for adherence or whether it is the prevention initiatives. I would say in terms of the drug budget eating up all the money that there is a threat there, but also the fact that now, with so many different commissioners, potentially if the commissioning is devolved to PCT level, one voluntary organisation which maybe provides services across an area equivalent to a strategic health authority or more is going to have to have so many different commissioners to negotiate the contracts with that they could spend all their time negotiating contracts. Take the example of outreach work to prevent HIV with gay men around a city centre. In a big city you might have a place where a lot of people go, where gay men are easy to access, so you might need to fund prevention activities in gay bars within a gay village. Those gay men will be coming from a wide geographical area and it is logical if that prevention activity is going to be funded it should be funded from the places where all those gay men live. It may well be that the PCT which hosts the gay village says it cannot afford to pay for all the prevention work and the PCTs in the surrounding areas may say they do not have a gay village on their patch, they do not have any of this activity, they think they can disinvest from this. Yet again this highlights for me, if the voluntary sector is threatened, which I think it is, the importance of commissioning on a broader geographical basis and getting the whole picture.

  695. Are those services which would be more difficult for the statutory services to provide?
  (Ms Lowbury) Yes.

  696. They can crucially only really be provided effectively by the voluntary sector.
  (Ms Lowbury) Yes, the sort of services which require organisations who are very closely in touch with the communities.

  697. Moving on to clinical services, I am confused about this open access. HIV is supposed to be open access but if there is no open access to GUM clinics and we are finding that there is a great delay and clinics close, clinics do not have appointment systems because there are so many DNAs, if you are delayed in getting to a GUM clinic, how do you in fact have open access to HIV clinics?
  (Dr Barton) The open access is in terms of geography. Wherever you live you can choose to go to a GU clinic anywhere else in the United Kingdom. That is still open access. Nobody is saying that you live in this post code so you cannot come to this clinic, you need a referral from your PCT or your GP. It is still open in that sense. The barrier, as you have heard and seen, is the waiting times and the quality you will get when you get there. One of the targets of the sexual health strategy is to offer HIV antibody testing to everybody at their first appointment. You are squeezing that in because you are hard pressed to get through the work. With the best will in the world everybody will try but the longer you have to talk to somebody about it, the more chance they will make an informed proper choice. It is still open. We shall do everything we can to bring patients for testing, but there are barriers and sometimes people will hear a campaign, like the one coming up now, they will phone up, call into a clinic to make an appointment, find they cannot be seen for a week, two weeks, three weeks, and they will go away and forget about it for a bit. That is a public health issue. If that person is positive, they are potentially able to affect others. Their health will deteriorate, their health costs go up the longer they wait to be diagnosed. That is all a huge issue.

  698. The basic delay is the access to the GUM clinic in the first place.
  (Dr Barton) Yes. As far as I am aware there are no waiting lists to start antiretroviral therapy, there are no waiting lists to be seen by HIV specialists, indeed patients can travel and access HIV specialists where they want, if they know about it. The other factor is that often it is the patients who are themselves very empowered, eloquent, intelligent, or have been given that empowerment, usually by a voluntary agency, to seek help. There is a real concordance in the way a lot of voluntary agencies advise people where to go to get seen and treated.

  699. We have been given the Royal College of Physicians' recommendations about services for HIV, that a consultant should see five to nine patients in a three-hour session. What do you in fact do out at Newham? How many do you have to cope with?
  (Dr Fakoya) I shall give you an example from this week. I have taken three clinics and an average of 15 patients per clinic.
  (Dr Barton) My clinics usually have 18 to 20 booked and that is with double-bookings. You are counting on a few DNAs. If they all turn up, then the clinic goes on to half one or two o'clock and everybody is kept waiting, but usually people understand. They are fed up and they are not happy, but they understand. That is the way it is. We are lucky that we have been able to manage to make use of other practitioners to try to reduce this workload in the HIV clinic. We have a scheme which is being piloted looking at individuals who have regular undetectable viral loads who have reconstituted or well preserved CD4 counts so their immunity is okay, they are taking their drugs reliably, they are coming back to be seen by a nurse specialist for follow-up using a check-list approach and will only see the doctor if there is a new problem or if they have a particular issue they want to discuss with the doctor. We are working more in teams using nurses and that is good modernisation, good use of the skills of the staff. To get that approach, you have to take somebody out to build it up from their regular work and what is being squeezed more and more is that there are no people with a couple of hours to go to plan this new service because they are so needed in the existing service. The development needs a bit of time to plan and to make it work. We think we can roll that out if we are given some development money so to do.