THURSDAY 12 DECEMBER 2002

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Members present:

Mr David Hinchliffe, in the Chair
Mr David Amess
John Austin
Julia Drown
Sandra Gidley
Siobhain McDonagh
Dr Doug Naysmith
Dr Richard Taylor

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Examination of Witnesses

DR SIMON BARTON, Consultant Physician, Chelsea and Westminster Healthcare NHS Trust, MR SIMON COLLINS, Representative, HIV i-Base, an information provider for patients and health professionals, MS RUTH LOWBURY, Director, Medical Foundation for AIDS and Sexual Health, DR ADE FAKOYA, Consultant Physician, Newham Healthcare NHS Trust, MS CHRISSIE GREEN, Clinical Nurse Specialist, West Middlesex University Hospital and MS HEATHER WILSON, Senior Health Adviser, Barnet General Hospital, examined.

Chairman

Good morning, may I welcome you to this session of the Committee and particularly thank our witnesses for their co-operation with our inquiry and for the written evidence you have given us, which has been very helpful? It is traditional for you each very briefly to introduce yourselves and say a bit about yourselves before we start. May I begin with you, Mr Collins?

(Mr Collins) First of all, I am a patient. I have been HIV positive since the late 1980s so have about 20 years' experience of HIV. I have been working in the voluntary sector for the last five years in two voluntary projects which provide publications to healthcare professionals, a bulletin for doctors every month, and a range of patient guides to keep patients informed. We provide a direct treatment support line for patients and are also involved in some European treatment networks for patient access.

Who funds your work? Is it a range of sources?

(Mr Collins) It is a very good question. It is very hand to mouth. Although our organisation has been running for several years, there is no money in the bank at the end of the month and it is very difficult to identify a central fund which links to the NHS given the services we provide. We get some funding from independent charities and some funding from the pharmaceutical industry.

That in itself is clearly an issue from your point of view.

(Mr Collins) It is. In order to keep going it is an ongoing issue. It is very difficult.

(Ms Green) I am Chrissie Green, I have worked in HIV for about 11 years now both as a clinical nurse specialist in the community and as a senior ward sister of a dedicated HIV unit.

(Dr Barton) I am Simon Barton. I have been a consultant at the Chelsea and Westminster Hospital for 12 years. For the last six of those I have been Clinical Director of the department of HIV and GU medicine which runs three sexual health clinics on three sites and the largest outpatient and inpatient community care unit for HIV patients in the UK.

(Ms Lowbury) I am Ruth Lowbury. I am the Director of the Medical Foundation for AIDS and Sexual Health which is a small charity supported by the British Medical Association. We work to influence policy and improve the practice of health professionals in relation to HIV and other sexually transmitted infections. We have recently been producing new standards for NHS HIV services and facilitating the further development of service networks for HIV. That work is supported by the Department of Health, London health authorities and the British HIV Association and PACT which is the national association of NHS Providers of AIDS Care and Treatment. Before I did this job, which I started two and a half years ago, I used to manage the sexual health and HIV programme at the then health education authority and I have been working in different aspects of sexual health for over 20 years.

Your organisation was initiated by the BMA, presumably because of concern by doctors about this area.

(Ms Lowbury) Yes; by the BMA and people close to the BMA in the late 1980s when there was a lot of anxiety among the medical profession about the implications of HIV.

(Ms Wilson) I am Heather Wilson and I am the Chair of the National Society of Health Advisers on Sexually Transmitted Diseases. I have been a health adviser working in sexual health since 1989. For the first five years I worked at the Middlesex Hospital, which is now the Morteman Market[?] Centre and since then I have been the senior adviser at Barnet Hospital, North London.

Do you have a nursing background?

(Ms Wilson) No, I am actually a social worker. Originally before becoming a health adviser I worked as a social worker in a community health centre.

Would the majority of your membership have a social or nursing background?

(Ms Wilson) Yes. Seventy-seven per cent of our members are from a nursing background, mostly in sexual health. The minimum qualification to be a health adviser is either to have a RGN or a qualification in social work. On top of that we have had counselling training or relevant experience.

(Dr Fakoya) I am Dr Ade Fakoya. I am a consultant in HIV and GU medicine at Newham General Hospital which is in East London. I have been the lead for HIV in the service for the last five years. I have a particular interest in HIV in pregnancy - Newham has one of the highest rates in Europe, between 1 in 150 and 1 in 250 pregnant women are HIV positive - and also in dealing with HIV infected individuals from African communities. Newham has quite a lot of co-infection with tuberculosis and Newham as a borough has a rate five times the accepted WHO standard for TB.

May I begin with a very general question? This inquiry was motivated by a general recognition of concern that there were serious problems in the area of sexual health policy. In looking at some of the figures we have been given in information for this specific session, the Kingston Hospital reports the number of new HIV diagnoses increased by 77 per cent last year. In the years between 1996 and 2000, South-West London clinics experience a 775 per cent increase in the number of HIV patients. Why do we have such a huge increasing problem? In what ways has the pattern of HIV transmission changed?

(Dr Barton) The increase has been noticed not just in London but across the country and those figures you give are very well put in the PHLS report which regularly reports increases and is projecting a further 50 per cent increase across the next three years. Where has that come from? If you look at new diagnoses, albeit with the understanding that those individuals might have been positive previously, but at newly diagnosed individuals, the increase is coming from men and women who have had sex with each other, heterosexual transmission, rather than a continuing increase amongst men who have had sex with men. When you then break that down, that increase is in the main coming from people who were not infected in this country, who have come here, having, we assume, been infected elsewhere by heterosexual transmission. The biggest growth is in southern and south-eastern Africa. That in itself is placing different stresses and strains on clinics and different stresses and strains on those caring for patients and supporting patients and on the support groups and the networks and the information channels which have been used. Another factor is that obviously we are seeing individuals faced with problems because of the waiting times to access genitourinary medicine (GUM) sexual health services, that there are now access issues to get in for your HIV test, which may be impacting from the busier centres dispersing people who then receive their test at a centre further away. So clinics which historically did not have a lot of HIV new diagnosis, might see them for that reason and also because many of the individuals are seeking asylum and may be being dispersed through the programme. Yes, the problems are increasing, getting ever more complex as well as greater numerically and because people are not dying, which is the wonderful thing about having looked after HIV patients over the last seven or eight years, the prevalence, the case load of individuals you are looking after is increasing and placing an ever increasing burden on the services which are looking after them. As those patients tend not to access general practitioners, preferring to seek their treatment in the open access units which deal with and specialise in HIV, that compounds the problem of us dealing with many issues of their health care, some of which are related to HIV, some of which might have been related to their HIV, but it is placing a wider spectrum of care on the multi-disciplinary team in HIV units. Yes, it is increasing. Yes, it is more complex.

(Dr Fakoya) Simon has made most of the points. Points to add would be that it is recognised that at any one time about one third of the cases are undiagnosed. There is always a pool of people who have not been diagnosed and also that many of the people who present actually present quite late, in the late stages of their disease. There are questions as to how long they have actually been in this country with the disease or whether it is a newly acquired, whether they are newly arrived in this country and whether transmission goes on in the different communities within the UK. Those are the important points.

One of the points which has been raised with us during the inquiry, is that because the prognosis for HIV sufferers has improved significantly an indirect or possibly direct consequence of that has been an increase in risky sexual behaviour. Whereas perhaps in the 1980s and the early 1990s with the knowledge of AIDS, and many of us would have known people who died of AIDS, people were much more cautious in terms of their sexual activity, the picture we are getting is that that now has changed and that risky behaviour is quite prevalent, particularly within the gay community. Is that a fair perception? I ask all of you.

(Mr Collins) In terms of transmission risk, which I guess is the key point in terms of the rate of new infections, it does not tend to be from people who already know their HIV status. The risk of infection is higher if you are not on treatment and it is higher if you do not know your status and it is much higher again if you have been recently infected. All those situations occur mainly to people who are not aware of their sexual health and are not aware of the implications of sexual activity. It is not particularly fair to pick out gay men in this situation because basically there is no increasing incidence amongst gay men. Generally men who have been diagnosed HIV positive are well aware of their status and are very unlikely to be the route for new transmissions.

I am not particularly singling out gay men. The evidence we have received certainly reflects what we were told in Manchester about their concern at the way in which gay men in their area were involved in very risky sexual behaviour. The whole idea of anonymous partners, not knowing who their partners were, makes it very difficult for the GUM clinics who are treating them to trace partners affected. That is the area of concern.

(Mr Collins) I would probably bring it down to public health and sexual education in schools being a really important issue. What you have is a generation which has not had that experience of HIV from 20 years ago when all their close circle of friends either became ill or they died much earlier than they should have done. For example, several of the calls I have received this week on the treatment phone line have been directly related both to heterosexual and gay men who have no background in sexual history, they have no understanding of sexual disease, they have no understanding of risk reduction behaviour. I guess I take that back to providing information in schools when people first become sexually active. Something like 25 per cent of new infections are in men who are under 25 and for me personally that is a very shocking statistic on how to address that other than providing people with new information they need in order to protect their health.

Clearly an issue we have looked at as a committee is sex education and we are going to have a session after Christmas specifically on this. It is an area where we have lots of evidence. Do you feel, particularly in relation to young gay men, that the current arrangements for sex education are appropriate and do you have worries about the constraints there are within the school system? Do you feel there are changes which should take place, particularly as it relates to young gay men?

(Mr Collins) As I understand it, providing accurate information is impossible within the current education system. It knocks on both to providing information to gay men and to heterosexuals. It is a very difficult subject and people have very little understanding of how to protect their sexual health as they are developing.

Are you basically saying this is something the Committee ought to take very seriously in our recommendations?

(Mr Collins) I am.

(Ms Green) I want to endorse that. It is extremely important that we look at sexual health education within schools, from the heterosexual point of view as well. We are certainly seeing young girls coming into the GU clinics; there is an increase in chlamydia and gonorrhea so you know they are having unprotected sex. I really do believe that the young think it is somewhere out there and does not affect them. They do not see the danger. The reason for that is that we are very, very bad at giving sex education in schools.

John Austin

I want to pick up two things Mr Collins said. You were stressing the importance of good sex education when people become sexually active. Would you think that is perhaps too late and that good sex education may be necessary before people become sexually active?

(Mr Collins) Yes, that is definitely a point of view. That also links to the fact that the UK has one of the highest teenage pregnancy rates, does it not? Yes, knowledge is important.

(Ms Green) There will be people who say you cannot start sex education until a certain age and it is wrong and you will be encouraging people to have early sex and things like that. There are very specific ways in which you can teach really quite young children about keeping their bodies safe, knowing about their own bodies and in that way you can then lead on to sex education and hopefully you will educate them before they are sexually active.

Are you aware of any evidence?

(Ms Wilson) There was a review in the BMJ this year which looked at primary prevention programmes for teenage pregnancy and found that the way to be effective, in fact they recommended it, was to look at starting as young as five. That was one of the recommendations in that report. It was a very big study.

Is there any evidence you know of which suggests that early education actually leads to earlier engagement in sexual activity or the reverse?

(Ms Wilson) No, the opposite.

(Dr Barton) We do know that the age at which people start having sex is falling, even though the age at which they receive sex education is not being reduced in most schools. If you are going to keep up with events and prepare people before they have a teenage pregnancy, before they acquire chlamydia, the only mechanism is by dropping your age and doing that experiment. That has not been done in any concerted, organised way. It is left to individual schools to be brave and organise that locally.

Another issue I wanted to pick up was about teachers being unable to deliver a sex education programme. Is that because of legal constraints or because teachers feel there are legal constraints or because the teachers are ill-equipped to provide that education?

(Mr Collins) I would say a combination of all three, but certainly the political climate is not to encourage open discussion of sexuality and sexual health.

Chairman

In relation to the points which have been made about sex education, and some of us are very receptive to this so it would be a message we are receiving, Ms Green talked about education on various issues from quite a young age, but what about the sensitivity to orientation? At what stage does that come in or become appropriate in your view?

(Ms Green) That can be quite young as well.

What age are you talking about?

(Ms Green) That is very difficult.

I know it is a very difficult area but we shall be asked to be specific on some of these things and it is important we are aware of what the witnesses feel.

(Ms Green) Primary school I would say.

(Mr Collins) Children are pretty smart pretty young. You certainly live in a society where multiple sexualities are now generally accepted. Anything other than recognising that would make issues more difficult in later life. I guess on that level, as it becomes appropriate and as individual children become inquisitive or ask questions or develop their own sexuality, then it is obviously appropriate. Many of the gay men I know are convinced that they knew their sexuality at primary school, that sort of age, very early on.

Your message would be strongly that primary school would be appropriate.

(Mr Collins) Yes, within the whole context of education on sexual health. It should be recognised as an equal choice.

(Ms Green) Children are far more aware than adults give them credit for at quite a young age.

Mr Amess

I am not going to give a view, but I find it absolutely fascinating listening to all of you with your views on how you deal with children. At the same time as you are giving this very early sexual education to children, what is your suggestion for how you deal with the media and all of that? Unless you can watch children morning noon and night they have access to the media which is a very, very powerful influence and it may not be singing the same song as each and every one of you appears to be singing. Do you have any suggestions as to how the Committee deals with that?

(Dr Barton) Are there not lessons from some of the work on smoking in terms of counteracting the effects of powerful advertising, linking it to messages which do make it very clear that there are dangers to health, there are adverse outcomes of something which can be very pleasurable and that is the message? You have to use sophisticated and quite clever techniques to insert the message you have in the way the media might be promoting sex as being something for all at any age. What we do not want as professionals is to be looked on as killjoys, but looked on as something which is giving people a measure of responsibility for the longer term to avoid problems which may affect the rest of their lives.

How do you control the content which is put out on the TV? This is not a trivial matter. This is absolutely core. The media is all-powerful, as we are experiencing at the moment. This is all wonderful, but what is your suggestion of how you control what the media puts out and when it puts it out?

(Ms Wilson) You can educate young people in thinking in a critical way about the media as well. The Healthy Schools scheme, which is a big WHO initiative, is run all across the country and has a programme which is usually euphemistically called Relationships and Family Life. It starts at primary school level and it encourages the children to think for themselves and to look at that stuff in a certain way. Schools often have problems with adopting that particular module of the scheme, which is interesting, because it exists and addresses a lot of these issues. Often the parents say they want the accident prevention module adopted or the drugs module and it is difficult for them to sell the sexual health module. You may not be able to control the media, but you can help young people think about the messages they are receiving.

I have five children and this module which is being rolled out across the country is news to me. Perhaps the Committee can receive a little detail. You say this is all across the country in all our schools.

(Ms Wilson) It is a school scheme.

Is this being taught in all our schools?

(Ms Wilson) No; it depends on whether schools take it up. It is on offer.

What is the take-up?

(Ms Wilson) I do not know what it is. I do not work in education. I just know it exists because I have been involved in the implementation in our local schools.

Where is this?

(Ms Wilson) In Barnet. I would not be able to tell you what percentage of schools in the country have taken it up. It is across Europe. It is a WHO initiative.

Chairman

We can pursue this with the appropriate Minister who will be coming to the Committee.

(Ms Wilson) Yes, it is an education initiative.

(Mr Collins) The importance of the media just highlights why it has to be something which can be addressed within schools. If you suddenly have a subject which you cannot talk about but which is so prevalent it is in every newspaper, is an integral part of drama and TV and you can watch gay episodes of The Simpsons but you cannot talk about it in schools, that is just an amazing situation. You need to resolve that.

Mr Amess: Perhaps we shall leave that to the next round on education.

Dr Naysmith

One of the things which has become clear in this investigation is that there seems to be quite a marked increase in co-infections between HIV and other sexually transmitted infections. It is even suggested that picking up some other infections like chlamydia is an indication that safe sex is not being practised. However, I do not want to talk about that for the moment. Does co-infection have any particular effect on treating HIV infection? What difference does it make that other sexually transmitted infections are present?

(Dr Fakoya) There are certainly co-infections with a number of different agents. We can talk about co-infections with hepatitis B and hepatitis C which are increasing, particularly as people with HIV live longer and those infections are being identified. There is also an issue about sexually transmitted infections increasing the infectivity of HIV as well. Those are the two issues.

Is there a suggestion that it increases the infectivity?

(Dr Fakoya) Yes; certainly genital infections increase. In fact the majority of sexually transmitted infections will increase the risk of transmitting HIV to another individual.

(Dr Barton) Any alterative condition which breaks the skin or mucosa will increase the likelihood both of transmitting, because the viral presence, the viral quality in those sores will be greater, or of acquiring it from a person with it or receiving it. Hepatitis increases the problem enormously because of the effects on the liver affecting drug metabolism and affecting the other treatment needs of the individual. On the sexual health issue, including syphilis and gonorrhea, many of the new cases in London are in HIV positive people and that does raise a lot of questions about how we link together the sexual health and HIV care of individuals. Many of us feel that people with HIV are a target group for better sexual health management and prevention. They are a target group for future infections. One thing is certain, the longer people live and the healthier they feel, the more opportunity there is for taking riskier activities. People will behave as human behaviour dictates and that is something we must address and that is why people were so glad that the sexual health and HIV strategy were put together.

For a long time there has been differential treatment of people infected with HIV and other sexually transmitted infections. You are suggesting it might in a way be a good thing that that barrier is breaking down.

(Dr Barton) Absolutely. In our own unit and many units, people are working to provide regular sexual health screening of people attending for their HIV treatment follow-up. So they do not have to go to queue separately and make an appointment a week hence at their local sexual health clinic. We can offer the one-stop approach. The other point is that it can be difficult when you have known people for a long time to raise the whole issue of sex and potentially having unsafe sex in a consultation where you have been talking about HIV and you have known that patient a long time. This is the reason for the multi-disciplinary team, having health advisers, counsellors, nurses, all working together. It should not always be the doctor who brings that issue up and may not be the most appropriate person to deal with it. Having a nurse for sexual health screening as part of HIV clinics is good practice.

John Austin

I am not denying that there may be an increase in risky sexual behaviour or that the better prognosis may be leading to more risky behaviour, but because people are not dying as a result of HIV infection, they are living. Inevitably there are more people who are HIV carriers, who potentially may have other STIs, who are sexually active. So even if there were no increase in risky behaviour there would be an increase, would there not?

(Dr Barton) Yes. Equally there is also the issue of potential transmission of a resistant virus. People who are doing well on treatment could potentially acquire another HIV which mutated so that is resistant to the drugs they are on. That is something which is being looked for carefully in many parts of the world.

Dr Naysmith

I want to turn to another aspect, which relates to something Dr Barton said earlier. I want to quote what one of the witnesses to the Committee has said to us already, Dr Evans of the Communicable Diseases Surveillance Centre (CDSC). He told us that the main heterosexual component in the HIV/AIDS reported cases is now comprised of "people who have acquired their infection within an African context and have migrated to the UK". That was very similar to what you said. You obviously accept that it pinpoints more the African context than general immigration. Do you think that is true?

(Dr Barton) Yes. It is one of Ade's specialist interests.

(Dr Fakoya) Yes, on the whole that is true.

Some people are arguing for mandatory testing of asylum seekers. I just wondered what your views were on such a policy being instituted. It is obviously very controversial.

(Dr Fakoya) It is a very controversial issue. From the point of view of somebody in health, if you are going to perform a mandatory test on an asylum seeker you have to decide what you are going to do with the results. You either test people and then offer them treatment or you test them and bar them from entering the country. Presumably if they are asylum seekers that will not go down well with a number of different people, including myself. If you are saying you are performing a mandatory test in order to offer them treatment, then that will set off another debate.

Do you think that would be a good thing?

(Dr Fakoya) No, I do not because I do not believe in a mandatory test. I believe there are other health problems among people who are asylum seekers which may be more easily addressed which are not being addressed at the moment such as tuberculosis. History has shown us that any of the countries which have looked at implementing mandatory testing for HIV have failed. It has just driven an epidemic underground and caused a lot of problems. I do not think mandatory testing is the way to go forward.

I am interested in what you said. Is there any relationship between the increase in tuberculosis and the immuno-deficiency which is caused by HIV?

(Dr Fakoya) Yes; clearly there are links between HIV and tuberculosis on a number of different levels both on the biological level with HIV making you more at risk of developing tuberculosis and also tuberculosis making your HIV accelerate faster.

(Dr Barton) I would agree with everything Ade said. Mandatory testing can mean a lot of different things; a lot is going to happen before you can make a judgement from a medical point of view. Many of the people, African, have acquired HIV, they have come here seeking asylum, they then present late. They come into our units very sick with very advanced HIV disease previously undiagnosed. Any discussion about how to diagnose them earlier, sooner rather than waiting for them to become very ill and very consuming of resources in patient care, would be desirable. You could do that by offering them voluntary testing in better settings as a targeted group. Mandatory testing, if there were a positive health outcome which could be really demonstrated as part of the asylum process and if that were something which in terms of civil liberties and human rights was acceptable, if that would achieve the medical end, which is what we want to do, to diagnose people but diagnose people who have been prepared for the diagnosis, we would feel that those individuals needed to give informed consent both to the test and as part of the process. That is the case for some countries and I believe when people apply for immigration to Australia they need to have a test. There are the practicalities of that in that if they test negative you then keep them in quarantine for three months and do viral load tests. Equally, how effective has that been at screening out TB which is a notifiable disease and which is already screened for as people come through the ports of entry. There are many other ways of achieving the health goal end, one of which is diagnosing people earlier and keeping them healthier at a more cost-effective rate.

(Ms Green) Maybe you have to look at the incidence of stigma as well if we do mandatory testing when we are trying to reduce the stigma which is attached to HIV. Asylum seekers often have double stigma coming into the country and that may be increased by mandatory testing.

(Dr Fakoya) The view that people have of asylum seekers in the media and in the community is very different from the view of asylum seekers whom we see within the clinic. The majority are women; we have a number of women who have presented in the last year who have either been raped overseas or have been raped as asylum seekers in this country. The youngest person I deal with is 14 and she is pregnant at the moment. We have had ten in the last year under 20. It is quite important that when people think about asylum seekers, they should think about the types of individuals we see on a day-to-day basis.

Is there any suggestion that people come later to seek your help because they are frightened that if they get diagnosed as being HIV positive or with AIDS something might happen to them. People are often confused about what the authorities' powers are and what they can do.

(Dr Fakoya) Absolutely. One of the biggest barriers to people accessing services is the fear of immigration officials and what they are going to do. We have heard today talk of mandatory testing of asylum seekers. People's fear of what they feel is going to happen to them if they come forward actually prevents them coming forward until they are really sick.

Would you say that does happen?

(Dr Fakoya) Absolutely.

Siobhain McDonagh

Between 60 and 70 per cent of my case work is on immigration and it is mainly people who are overstayers, who have been here for a very long time, who came in on tourist visas, visitors' visas and have stayed here for years. The people I meet who are infected with HIV and AIDS are those people rather than the new asylum seekers. It might just be the demographic profile of my constituency, but for them I suppose putting their head above the parapet and going to a clinic when they have no status and technically they should not be here because they should have gone some time ago is the group I meet and it is often men.

(Dr Fakoya) Clearly there will be geographical variations. In terms of the Public Health Laboratory figures, in terms of the heterosexual African epidemic, it is a ratio of 2:1 to women; the majority of them are women.

Julia Drown

Is there any justification for just looking at asylum seekers? Should it not be people going on holiday to the African continent as well, people making visits, people who have lived there for a while and then are returning to the UK? Would there be any justification for separating out just asylum seekers? If there were going to be mandatory testing, would it not be logical to test everybody entering, be it Ministers, be it anyone who has been to Africa?

(Dr Barton) The practical problem to that is what test you use if somebody has nipped out of the country for two weeks. Are you looking for evidence of viraemia, in which case daily viral load tests at expense, and keeping them three months?

That applies as much whoever you are testing.

(Dr Barton) Of course and that is the practical issue of why it is very, very difficult to implement. The model for that was Cuba in the late 1980s, early 1990s which did have a system whereby anybody entering the country and the whole country was screened for HIV and it is well written up by WHO and the Lancet. The impact of keeping people contained while you waited for their results to come back after a contact was enormous in terms of keeping them away from the general population. There is a well described method of how they did it. It is one way of running a public health system, but it is not something which fulfils the sexual health and HIV strategy's view of trying to reduce stigma.

(Dr Fakoya) It really goes back to what you want to achieve. If you are doing it as a public health measure, then that clearly does not work. If you are doing it because you wanted to detect people earlier then there are various other strategies which we know work. They would involve multi-disciplinary working in clinics and communities which we could put in place which would be better.

Are the people you see who have been infected through an African context only asylum seekers or are there others?

(Dr Fakoya) No, not only asylum seekers.

So there would be no logic to restricting it to asylum seekers only.

(Dr Fakoya) No.

(Dr Barton) When many of the people whom we see, whether they appear asymptomatic and have a test or come into our clinics, make contact with us and test HIV positive they often seem to get more support from not just our staff but from social services, from organisations like the Terence Higgins Trust (THT) than if they were not HIV positive. Many of the services are immediately geared up, they then have supportive doctors writing letters saying they need treatment, writing to their solicitors, giving them support for not returning home where they would certainly die without antiretroviral treatment. So the service we are offering brings us very much into line with the same objectives they have for seeking asylum and it is an increasing amount of our workload. After every clinic we are writing two or three letters at least to solicitors or in support of individuals around an unsocial issue.

John Austin

Although I share some of the experience of Siobhain McDonagh, not with overstayers but with asylum seekers who are awaiting determination of their application or indeed persons who have been given limited leave to remain, therefore people who are lawfully here, who may be reluctant to make demands on services because of the fear of the consequences for their application which is awaiting determination, do you feel that is a barrier to people coming forward and seeking services generally? Secondly, not just asylum seekers but minority ethnic groups generally, do they feel they have adequate access to services which are available? Are there barriers?

(Dr Fakoya) There are undoubtedly barriers to access to services for black and ethnic minority groups, not just in HIV but across the board in other health issues such as diabetes and hypertension. The data shows us that people from black and ethnic minorities, whether asylum seekers or here legally for many years, access health services late. There are several issues as to why that is. If they are asylum seekers there are issues to do with immigration. If they are not asylum seekers there are issues about health advocacy and understanding the health system and how it works, the doctor/patient relationship and being able to negotiate that. All those issues impinge on people's ability to access health care in this country.

(Ms Lowbury) One of the issues which has come up in the project we have worked on in relation to the provision of services around the country for HIV is that there are arguments about whether all the services should be concentrated in a few specialist centres or whether they should be available more widely. For minority ethnic groups and deprived communities generally, where they may not have many resources, it may be difficult for them to travel, they may not have either the financial means or the skills to travel, it is very important that services be available for them locally and that is one of the arguments, not for providing the complete gamut of specialist care through GPs, but involving primary care more in accessing HIV treatments and all the surrounding support which people on HIV treatment need: access to social care, access to mental health care services. I would say, above all, access to diagnosis. In all our communities there is a stigma about HIV and minority ethnic communities are no exception. Many people will feel quite nervous or reluctant to go and seek HIV testing in a centre which can be identified as a centre for sexually transmitted infections. It is very important that services for testing are accessible in a range of settings, including primary care and perhaps more community based organisations as well.

Dr Taylor

May I go back to treatment? From every witness in every session we have heard of the tremendous load on the GUM services throughout the country. I was a general physician in the early days before the services were really worked out and we used to dread getting somebody in with AIDS and an opportunistic infection because of the workload it put on all the staff. Has that improved? Could you give the Committee an idea of the workload from one single patient who comes into hospital with AIDS and opportunistic problems?

(Dr Barton) The biggest problems are in the late presenters, the individual who comes in through A&E previously undiagnosed. There you have a person accessing an A&E unit with a problem, a cough or a fever. Their ability to recognise that may be HIV related is an important part of all the training we do for all the A&E staff at our hospital and across London. Once they are then in, sure, it is a big team approach. Patients have multi-disciplinary needs. Once they are diagnosed positive whilst they are acutely unwell, the shock is compounded by being terribly unwell; trying to deal with finding out you are HIV positive when you are lying on a bed with life-threatening pneumonia or meningitis is an impossible thing for anyone to deal with. Therefore individuals need a lot of input, a lot of time. They can recover because we do have good management protocols once people are diagnosed, but we do know that the major problem is when an individual presents somewhere which does not have an HIV unit constantly telling them what to look out for and what to do, reminding them that 50 per cent of heterosexual men in this country with HIV have not been diagnosed yet, reminding them of that. If you do not keep saying that to staff at the front line they will begin not to recognise the diagnosis. Every year there is a lesson for the week or a story we hear of someone who spends a month in hospital before somebody thinks of HIV. That happens in all the units because it is sometimes a difficult condition to diagnose and people sometimes do not want to go to HIV because they do not think the person would cope or "It couldn't be them, could it?". That still happens today and better training of medical staff across the whole work force is essential to prevent that. Yes, we coped well with the inpatient workload. It is a multi-disciplinary team event. We are hopefully going to come onto commissioning later, but there is the issue that as the drugs budgets go up, putting pressure on trying to keep the bed numbers and the bed occupancy down, that is a tension which you cannot let go because you will still have people presenting late unfortunately.

(Dr Fakoya) Two things are going on. On the one hand we have patients who are diagnosed relatively early who go on antiretroviral therapy. They also still have needs, psycho-social support needs, the other needs and also the needs which arise because of the side effects of the drugs for various individuals. In addition to that we still have individuals who are presenting late. One of the things you are taught at medical school is to try to find one unifying diagnosis for a patient in that they only have one diagnosis. With HIV you often have three or four or five things going wrong with them. Just because you have found one you still have to continue to look and you will often find more. The average stay in our hospital for somebody who is HIV positive was about five times the average for a general medical patient when we did an audit. All those issues impact on our workload.

So there is a tremendous inpatient workload to cope with.

(Dr Fakoya) Our unit has a constant inpatient workload from ante-natal testing in women, managing pregnancy, to people who come via casualty and also people we know about who have complications, either before their treatment or because of the disease itself. There is an ongoing inpatient need which often gets forgotten because people now think HIV has become manageable.

(Dr Barton) There are issues around that. Yes, the inpatient need is less than it was eight years ago and we halved our beds in 1997 once antiretroviral therapy became effective and we started not having to many immuno-suppressed individuals. On the other hand, people at that time were predicting they would be able to get rid of all the beds in many centres because people will be living well and will not have opportunistic infections and tumours. Most of us thought that would not happen, because people will present late and because treatment is not effective in everybody and therefore there will always be people who become severely immuno-suppressed. The other factor is that obviously back in the early 1990s there were many opportunistic infections which people were learning on. There was a whole cohort of physicians who learned in the late 1980s early 1990s to manage those conditions. Because they are much rarer, and some are very rare outside specialist centres with a number of beds and a big catchment area, keeping the message that HIV needs to be considered in the diagnosis of somebody who goes into a district general hospital with a fever and pneumonia is an essential message which we need to keep getting across. Because only one a year may turn up there it is still something you cannot afford to miss because the outcome will be that much worse. That is why we need better networks of care where every unit, wherever people are, is linked in to obtain specialist access, information and help, even for a general physician who might be faced with a problem.

Julia Drown

I should like to move on to funding and commissioning. We have had evidence to the Committee from people raising concerns over the ending of ring-fencing on HIV funding. I wondered whether any of our witnesses might be able to tell the Committee about their view on what impact that might have on patients.

(Dr Barton) May I offer to table something which I mentioned and I will tell you about it, if I may? The effect of commissioning has been surveyed by the Terence Higgins Trust along with PACT and Beaver in something which has just come out called Disturbing Symptoms. THT sent me a number of copies, which I should like to distribute. To summarise, essentially it was a survey done of about 20 per cent of primary care trusts (PCTs) in the late summer this year: over half of the PCTs surveyed did not have an agreed process for implementing the national strategy; about two thirds did not have an up to date assessment of local sexual health and HIV needs; more than one in four had not included it in their SAF at all; one in five did not have a lead named person. From our perspective that completely backs up everything we have experienced in London with regard to the shifting the balance effect coming at the same time as implementing the strategy need. Where individuals within a health authority had developed a special expertise and understanding of the issues, both amongst users and amongst clinicians and health care workers in the service, who had specialist commissioning knowledge, many of those people have either evaporated, moved on to other jobs or been lost, or are not in the right place because of the way PCTs have been organised. From the Chelsea and Westminster point of view, even though we feel relatively lucky in having some continuity with people who did work in the old health authority, it is those people, who were the old health authority people, with whom we have maintained contact, wherever they have gone in the PCTs. Also there has been a dispersal of the way in which you can be reactive in that one of the problems is wanting to talk to somebody about the expected increase in patients, wanting to talk to somebody about the expected increase in drug costs. At the moment there appears to be no lead person either within the PCT or indeed within London who is taking responsibility for that. Many people have an interest in specialist commissioning or in a consortium arrangement but finding someone, whether it be a chief executive or a commissioner who can take responsibility and say yes, I am the person to tell about this problem, is proving very difficult.

Chairman

I am very struck by what you have said. When we were in Manchester we were very concerned that the picture they portrayed there was one of some degree of confusion as to who was doing what in relation to commissioning services. Another surprising element of this inquiry has been the very limited evidence we have had formally from public health specialists. Are you uneasy about the placement of the wider public health function within PCTs? Are we looking at something broader than purely and simply the issue of sexual health?

(Dr Barton) Our lead PCT in the North West sector is Hammersmith and Fulham and we are fortunate that the chief executive is an ex public health doctor, Dr Hargreaves. Although he is very well aware of and understands the problems, I would be aware that for the PCT it is not a priority and public health is not a priority, and that NSFs and targets confer priorities to chief executives in vulnerable jobs across acute trusts and across PCTs. Not having that, and that was a specific in the implementation plan for the sexual health and HIV strategy, one of the responses said that many people were concerned there was no NSF. It answered it in a way by saying that only a limited number of priorities can be set and basically saying no, sexual health and HIV do not merit that level of priority. In the new system, as fragmented as it is, it is inevitably then going to fall down the list of priorities, for people to say you are now responsible for working to make sure that within our area we offer a decent and quality service. That is a problem: however hard working and however well meaning people are it is difficult to get it on a priority list.

(Ms Lowbury) Your question was about the effect of mainstreaming. One of the things which a lot of people are concerned about at the moment is that there has been a kind of double whammy. On the one hand the traditional ring-fencing and funding of HIV for treatment and prevention has been removed and at almost the same time there has been a complete restructuring of the NHS in terms of commissioning arrangements. The people who understood what was being done with the ring-fenced money are no longer necessarily there, at the same time as the ring fencing has been removed. That is why a lot of people perceive it in particular as a threat because a lot of expertise has been lost, the understanding has been lost and that is compounded by what Dr Barton has been describing in terms of the lack of prioritisation for HIV and sexual health. I am certainly very concerned about that and without saying if you accept it you cannot go back to the situation you had before, then at the very least I would argue that there has to be something which will encourage PCTs, commissioners within PCTs, to take on HIV and sexual health, to recognise it as a priority. One mechanism may be for individual PCTs not to commission the services themselves but to work in consortia and, as Dr Barton has just described in his area, for one PCT to take the lead among a number of PCTs. At least then there can be a little more accumulation of expertise and services can be commissioned across an area which may be roughly equivalent to what the service network would cover and there can be a rational approach to the services which are needed for a population of the sort of size which it is appropriate to look at for a disease like HIV. Even with that, there is still a worry and unless HIV and sexual health start to appear, if not as an NSF then in the planning and priorities framework for the NHS and in performance indicators, then it is going to be very, very difficult for people who are newly coming into HIV commissioning to take the steps needed and to counteract the damage which might be done by the mainstreaming of the previously ring-fenced budgets.

Julia Drown

At this stage it is not even clear in many parts of the country where the commissioning is going to take place whether it is going to be in consortia or whether it is being done individually, let alone the fact of trying to get a lead person.

(Dr Barton) Yes. This concern is not new. Some of us sat on the ministerial stocktake in 1998. The effect of resident-based funding and how you would therefore ensure that people continued to have freedom of choice to go to the treatment and care centre that they wished was discussed then and how you would ensure the movement of money to follow the patient. Then with mainstreaming and then with shifting the balance, there is now concern about who is responsible. We were told that specialised commissioning, regional specialist commissioning groups would be the key. These would be individuals who would be able to move across and move the PCTs to keep going with something which was more important than their local health economy. Within London I went to a meeting or two last month where it is clear there is that tension between the freedom of the PCTs to choose whether to pay for something or not and something which is perceived, along with a lot of other specialist areas, as having specialised commissioning function. From our perception - I guess we would say that - we would argue that specialist commissioning was put there in order to protect something from a system which is there for individual health care but public health care has to come from looking at a broader population need and the needs of running a service across networks where people are free to move from one place to another. At the moment there does not appear to be the central lead about. There has been a review of specialised commissioning which should have been published some time ago and has not been published. I know what is concerning a lot of the specialist commissioners in London, particularly as they try to relate to PCTs outside London for those patients who travel into London for their treatment and care, is whether or not agreement can be reached with London, when you are talking about ten patients coming from Norfolk, and how it can work unless there are some clear guidelines about ensuring the money follows the choice of the patients as to where they are properly treated.

Would I be right in thinking that what I am hearing is that the concern is really over commissioning arrangements, about trying to establish those important relationships, rather than the ending of the HIV ring-fencing?

(Dr Barton) Yes. Mainstreaming happened slowly. People kept saying ring-fencing has gone and argued it should be there and suddenly a bit of money would come back from somewhere. We all accepted that the rules in the system were there to maintain the freedom of choice for the patients as to where they are treated, to support the quality of the service and develop networks. Then mainstreaming the money is fine. It would work, as long as it is on a priority which gives the public health need into those people who are then making the final decision of who pays the bills. Left with the lack of priority and the uncertainty and the lack of individuals to act as advocates within the system, the acute trusts are potentially going to face a shortfall in money coming to support patients they are treating; even though within the implementation plan this is a steady state year, there are arguments happening about not paying as much because of cost pressures elsewhere. What then happens when the money runs out in our trust because it has not come in? That is a local PCT decision. Where is the instruction from the centre that it has to be paid, that patients have to be treated?

What we do have are the national standards for HIV treatment and support and social care. From what you are saying, we as a committee cannot be very optimistic that that is being taken up by PCTs and being implemented. Do any of our witnesses have any views on how that should happen? How we as a committee might recommend it could happen?

(Ms Lowbury) We have been developing the standards and they are actually still in draft and not out there officially. However, we have been sharing them quite widely in consultation and I know some people have already started to look at how they can use them. What the standards are designed to do are to describe a level of care which anybody with HIV should be able to expect wherever they live in the country, whether they are in London and accessing Chelsea and Westminster, or whether they are in Cumbria. The structure of the services may differ but the general level of care should be the same. I have been told that some commissioners are using them in quite a constructive way. Somebody told me she had done a summary framework for her area following a care pathway. It goes back to what I was saying before, that if this area is not seen as a priority, then standards may sit in the bottom drawer. If the standards are not used in terms of commissioning to ensure that the services commissioned are designed to reach that equitable level of care and if they are not used in performance management by strategic health authorities and if they are not used in clinical governance within trusts or in audit, then their usefulness will inevitably be limited. They need a push, they need something.

When we put that to Ministers, I know what Ministers will respond. They will say the whole of the health service is saying we are giving them too many targets, too many things to deliver on.

(Mr Collins) HIV is not a static disease. It is the focus of probably more research as a disease area than practically anything else in the bigger picture. Within the UK you have arrived at a situation where you have a really high level of expertise which is concentrated largely in research centres and you have the prospect of that expertise being lost. It is not just the implications for the standards of care now, but the implications for the standard of care as that changes. The standard of care and treatment will be different in six months and will be different in two years and the drugs will be different and the diagnostic tools which are used to optimise patient management will all change very rapidly. I guess the one clear thing which does come from cost economic studies and research is that treating a well patient is far cheaper than treating someone who has already become ill. The prospect of having to educate 300-odd PCTs in whether they should use a more sensitive viral load test from a patient perspective - and we are an activist group which tries to raise that level of awareness as research changes - is a nightmare unless you have a centralised pool which is then recognised and resourced. If you have a centralised PCT which carries the weight for the standard of care within the UK and then that is resourced adequately so it says that in providing treatment without adherence support you are throwing half your money away, then you have to recognise that needs resourcing within PCTs. The main concern of mainstreaming is that that safety for that level of care has just been removed. We know management are concerned that it will be maintained at the current level.

(Ms Lowbury) I think you were asking in a way whether it was wrong to say that HIV and sexual health are not a priority, whether we accept that is what has been said. Talking about the mainstreaming issue again, in the early days of HIV, a ring-fence was put around the budget because at that time HIV was perceived to be a very serious threat to the public health of this country. Perhaps over the years, as the numbers did not increase as fast as we expected and with the effectiveness of new treatments, that feeling relaxed, HIV slipped off the agenda and it is now not being accepted as a priority. However, we have just heard that the Public Health Laboratory Service predicts a 50 per cent increase over the next three years and I should say it is very dangerous to assume that it should not be a priority; it really should. It is a communicable disease. It is increasing at a rate which is nothing like the rate of the other priorities in the health service. I would say that it should be one.

John Austin

In Manchester, although it had been agreed that a single PCT would commission for several PCTs, they had not kept sexual health within one area: one PCT was commissioning one aspect of sexual health services and another PCT was doing something else. Do you think that is wise, or do you think it should be a single commissioner for the whole of the sexual health area? With that, what do you think the role of the strategic health authority is?

(Dr Barton) What we should like is for commissioning to be about more than just arguing for money. It has to be a discussion about the service which is offered to patients. All too often any discussion you finally get, as with the old style purchasers, the health authorities and now the commissioners, is about your drugs budget, whether your drugs budget is likely to be overspent; it is going to be a cost pressure. It obsesses commissioners in their role. You have to begin looking at the service you are providing both for those people who are diagnosed and efforts to diagnose people who have not yet been diagnosed. That needs sexual health and HIV to be brought together. There was a certain amount of divvying up in sectors where there were several PCTs, "You do this. We'll do that. You do the other", without logic, without a plan, just to share the workload because they knew they were going to be overstretched and there were limited resources and also the political tensions around one PCT becoming the lead and that has been to an extent the case in our patch. What then happens when you have a lead PCT? Can they make decisions? Can those decisions be strategic about the way they are going to model services? In our area, how do they relate to the whole of London? Unless you draw the whole of London together, with a level of clinical and commissioner working together which London has not enjoyed, the problem is that you do not actually get a coherent plan. You just end up arguing about drugs budgets and writing letters about risk, sharing of monies and overspending.

Chairman

May I raise a wider concern in respect of the role of PCTs, which in a way underpins all we have been talking about in this inquiry? This is a grossly neglected area of health provision and one of the reasons why it is a grossly neglected area, whether it is PCTs or whatever, is because people, the public, those who will be users of the service, are not in a position to campaign openly and argue for improvements to what frankly in some parts of the country is quite disgraceful provision, appalling provision. We have picked that up and received evidence. I made the point a few weeks ago that I do not recall in nearly 16 years as a MP receiving one letter from anybody saying that they went to the local GUM clinic and the service they received was poor. That simply will not happen. We all know that. How do we get an awareness of the importance of this whole area into the political mainstream and an awareness of the fact that frankly this whole strategy is shambolic? You can go away and think about that if you want.

(Dr Barton) We can encourage those users of our service to write to you.

The point I am making is that we are concerned here about how to ensure that PCTs reflect the genuine concern about this area. I am not optimistic. Within the climate of the users, the patients, the people accessing the services, being unwilling to speak out, although there are campaign groups and individuals, in terms of pressure on MPs, there is none. It is a non issue. Look at the press benches. Nobody is here. That is very interesting. Nobody here.

(Dr Barton) In response to that you could take the cup half full view and say HIV treatment and care in this country has been a fantastic success. Nobody in this country since about 1996 has been refused access to any drug which is going to help them. We have some of the best units in Europe. Wherever you are in the country, if you can get into a GU clinic with all their current pressures, you will access somebody who is a well trained professional; we have high standards of training. You can look at all those good things and the way all the bases are currently loaded for it all to go horribly wrong and nobody seems to be taking notice. But it is not big news. Nobody has been turned away from an HIV unit and told they cannot have treatment today or they are going on a waiting list for treatment. The bases are loaded whereby the money is not where it needs to be, it is not following the patient, the people with the money down at PCT level do not see this as a priority. So at the moment this is so timely because we are looking, as you are, at this vision of it all going wrong, but actually because of the incredible hard work in pulling it together by people on the front line it is hanging in there. We are going on spending money on drugs whether we have it or not.

Dr Naysmith

That may be true for HIV, but it is not necessarily true for some of the other sexually transmitted diseases.

(Dr Barton) No.

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.

John Austin

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 our PCT, and believe me with our local PCT we have tried, who would we then raise it with? 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.

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.

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 take them we take them 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.

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.

Sandra Gidley

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.

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.

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.

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.

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.

Chairman

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 taken 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 privilege 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.

John Austin

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.

Sandra Gidley

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.

Is it a "nice to do" or a "must do"?

(Ms Green) I am not sure about that.

John Austin

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.

Are those services which would be more difficult for the statutory services to provide?

(Ms Lowbury) Yes.

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.

Dr Taylor

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 anti-body 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.

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 have either been 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.

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. Does this impinge on your own professional development? Are you able to take all your study leave or does that get squeezed out?

(Dr Fakoya) Everything gets squeezed out if we are being brutally honest.

You have to keep the service going.

(Dr Fakoya) You have to keep the service going. What really gets squeezed out is your personal time. If you ask the majority of GU/HIV physicians they will probably have very little personal time and also development time within the working week. All those additional things you have to do in terms of management, in terms of training, you still do but everything gets squeezed by your clinical workload.

May I go back to networks for a moment? In the information we had you were actually working on a paper on managed clinical networks and this is obviously crucially important. We have talked to people from peripheral DGHs, single handed, under tremendous pressure. How is the paper coming on? What is it going to recommend? Is it fair to ask or is it still under wraps?

(Ms Lowbury) There are two pieces of work. The first one is a report which will be published very soon on a project we did over a year ago now. Our project team went out and talked to people in four different parts of the country to see what was happening in relation to network development and to try to stimulate some more activity to develop networks. The second piece of work is something we are just embarking upon now which is trying to find out what has been happening in other parts of the health service beyond HIV, to see what the experience of networking is outside as well as inside the HIV sector and then try to share that learning among people working in HIV and enable them to talk about what the barriers and facilitating factors might be and try to suggest some scenarios where networking might work better. It is not a prescriptive model at this stage. What we found from the previous project was that the service networks are a way of enabling people to work together across different services. Where one individual DGH, for example, cannot meet all the quite complex needs of a person with HIV, if they work together with other services maybe they can and it may be the easiest point of access for the patient. Networks are likely to work across more than one PCT boundary and across quite a wide area, maybe equivalent to a strategic health authority. We believe they ought to involve not only clinical services but also social care, the voluntary sector and service users as well. Their development so far seems to be quite patchy. We found lots of little bits of networking going on, arrangements between hospitals who have agreed to provide cover or joint clinics. One small service had decided to tender out its tertiary provision to a bigger centre, so trying to take the control for itself. Some quite innovative models of shared care between specialist centres and GPs or with peer support for services around adherence. All sorts of different bits of networking, but nothing very formalised for a whole network set up with clear roles, clear responsibilities identified and clear protocols. One of the things we have identified through what we found is that it is very important for networks to be set up in such a way that there is an identified lead person, so that somebody has the responsibility for taking it forward, so that commissioners can play a key role, either in terms of leading the network, or ensuring that the network lead is there. Resources are needed, maybe not major resources, but enough to allow people to get together.

To get the time to work it out.

(Ms Lowbury) To get the time to work it out, to get the time to attend meetings. There are ways of doing that without spending a lot of money. Also IT infrastructure. I think electronic communication could be used a lot more than it is.

(Dr Barton) As an example of that, the unit we run is across three sites and runs as a network. We have informal links to three other hospitals, West Middlesex and others, which are based on doctors working together, trying to get the acute trusts to have an arrangement which follows that informal arrangement of people seeking to collaborate or indeed move patients. There is no mechanism for it. It does not seem to be on the acute trust agenda to have a network. Reducing competitiveness is clearly a desire. It has to be made to happen either by the network, through the lead PCT, or through the strategic health authority. They have both to endorse and empower the development of those networks. At the moment a lot of it is informal. In our area we have had a success with regard to oncology patients, people with tumours who have HIV now being centralised at our unit with a specialist oncologist whose research and work is around HIV. That is giving better care. They come for that, but then for the rest of their antiretroviral care, they will return to the units from whence they came. That is important because there is a fear amongst doctors working in centres which are smaller than their neighbouring centre, that if they send their patient up there for something special they will never see them again and it will undermine your clinical care. There is a responsibility on the larger centres, or those with more specialist services, to have to return the patients and we absolutely endorse that. As a very large centre, we are not trying, and would not, to poach patients. It is important for their continuity of care that they do go back. That is about being in a network where you work together rather than in competition for numbers, which is in nobody's interest.

You have a network which is really working, that we can perhaps draw attention to.

(Dr Barton) Yes, but which needs support to be formalised in terms of the funding.

The PCTs particularly.

(Dr Barton) Yes.

Siobhain McDonagh

The strategy calls for the expansion of the role of nurses and the strengthening of the role of health advisers in HIV/AIDS treatment and care. With the proposals to increase HIV testing will an increase in staffing be enough to cope with the workload?

(Ms Wilson) It depends on the type of staff you are talking about. It seems to me that if you are going to increase HIV testing, primary care needs to be targeted. I certainly see a lot of patients who often have a delay in their test because they approach their GP and GPs at present are often reluctant to test people or feel they do not have the skills for HIV testing. I am very delighted at the new BMA guidelines which have come out this week, which they have agreed with the insurance companies. These will make it a lot easier. If you look at the model of some areas, Birmingham for example have employed community health advisers to work amongst a number of primary care teams and those people can either run HIV testing within primary care centres, perhaps one session a week, or they can train GPs and practice nurses in HIV testing. You also need to think very carefully about the care pathways for those patients if they test positive. Within GU clinics at the moment the model tends to be that most people are offered HIV tests by the physician and only those who are deemed to be very high risk for HIV, or who have other faculties, perhaps they are very young or they have psychological problems, are referred to health advisers for pre-test discussion. It is impossible for a small number of health advisers in a clinic to see every single patient who walks through the door to discuss HIV testing with them. If you did want that to happen, you would then need to increase the number significantly. I do not think it is necessary. If health advisers see patients who have been identified by the physician as being a high risk patient, then they can give that person more time to look at prevention issues, think about partner notification and consider the implications of a positive result.

(Ms Green) I am not actually involved in pre-test counselling or anything like that. The impact of patients testing positive will have a knock-on effect to my work. At the present time I am community based, but I also work in multi-disciplinary adherence clinics within the GU clinic. On the increased numbers, may I just say that 11 years ago when I was a clinical nurse specialist the first time round, we had maybe 50 patients on our case load. I was working in the Borough of Ealing. We had three nurses, we had a part-time dietician, part-time OT, a dedicated social worker and a welfare rights officer. Now, with the numbers vastly increased over that, I have been in this post for a year and I have had over 160 referrals in that year. My ongoing case load is about 70 patients between the Borough of Ealing and Hounslow and just me for that. I do have access to part-time OT for HIV. I believe we are going to talk about social services later so I shall not go into that now.

How effective are the links and communications between medical and social care?

(Ms Green) There is disparity in fact. In the past, when the need was not so great, we had dedicated social workers just for HIV patients who were attached to our clinic. We also had a dedicated welfare rights worker. Since then, certainly in Hounslow and Ealing, those services have become generic. I know at Chelsea and Westminster they have a dedicated social work team which is about to become generic. I think that creates huge problems, certainly from my point of view and from the social worker's point of view. In Hounslow for example, and Ealing, if there is a child involved in the family, whether the child is positive or not, it goes to the children with disabilities team. If it is an adult who is positive with no child involved, it goes to the adult team. If it is somebody over 60, it then goes to the elderly team. Those teams are not really used to dealing with patients with HIV and their complex problems. To give you an example, I had a woman who had recently started therapy, she had then been diagnosed with Karposis sarcoma and had to have chemotherapy and she was caring for her daughter with cerebral palsy who was HIV negative. Because she had a daughter with cerebral palsy, I had to go to the children with disabilities team to access care for her. They did help with respite care for the child, but they could not really understand the difficulties that mother was having with starting therapy for her HIV and how that would be complicated by the fact she was having chemotherapy as well; coming up to hospital, going back, just the day to day problem of taking her medication. It was very difficult and I had to explain to them what that meant. It was not that they were not caring. It was just that they did not have that knowledge.

Chairman

I was in a conversation with the Secretary of State yesterday about the whole issue of anticipating future professional roles. One of the things I have been very concerned about is the way in which I see a need to retrain people for a combined nursing and social care role in a range of areas; mental health would be one good example but this one as well. Do you see that might be particularly relevant to addressing some of the problems you are both dealing with if we were to look ahead and perhaps change the nature of professional training and the defined roles. Some of us are old enough and long enough in the tooth to remember Lord Seebohm's report in 1968 and the idea of generic social workers where you would not have three separate chunks dealing with the family. That came in in 1971 and we are back to the kind of situation you have just described.

(Ms Green) Training does need to be looked at. Certainly as we are seeing increasing numbers, it is whole families who are being affected by HIV. Professionals have to be able to look at a family as a whole and at the moment that is not really happening.

(Ms Wilson) Health advisers traditionally have had to take responsibility for co-ordinating the social care of the HIV-positive patients and it often involves a lot of direct advocacy work. I know that my job often involved phoning housing departments, helping refer the patients to the appropriate agencies and often it is very difficult to get a specialist social worker for someone nowadays. It used to be that everywhere you looked there were specialist social workers, but nowadays I find that if they do not live in the right post code they may not have a specialist social worker. Some boroughs will provide them and others will not. There also seems to be a lack of communication between boroughs. I will speak to someone, make a referral and they will look at a map and say they are on the wrong side of the street, they are sorry they cannot use all the stuff I have just told them. I then ask who I need to refer them to. They will say they do not know. You are right in that you can have a health worker who is an expert in social care, but if they cannot then access the networks outside which they need to support that, it is often very difficult to contain it all themselves. Unless they have a huge team within their medical service which consists of social workers and psychologists and everyone, it is a lot of work for them to take on; whether your local housing departments would necessarily listen to you, if you were not a social worker from within their borough as well.

Siobhain McDonagh

They would not listen.

(Ms Wilson) It is quite a difficult thing to ask them to take on the whole responsibility.

(Ms Green) Another problem really is the patients themselves wanting to be referred. They are still absolutely terrified that if children are involved, because they are HIV positive the social worker will take the children away. That has a knock-on effect that in some instances they will not access GPs because they are afraid of that, they certainly will not tell a health visitor they are HIV positive. In my role I am going round, I cannot tell the health visitor, I can work with the specialist midwife but the secrecy which still surrounds HIV is still a huge problem.

Dr Taylor

In your letter, Dr Barton, written back in May, you highlighted the possible value of NHS Direct in providing sexual health advice. Has anything happened? Are there any developments from that?

(Dr Barton) Yes. We have put together a proposal which is awaiting funding and approval, to have one of our nurses working between NHS Direct and ourselves. NHS Direct does take calls from people about sexually transmitted infections. I know that there are other helplines and websites, such as sexwise, which take many more calls and I do not know how accessible the NHS Direct one is. We were concerned, as they were, about the level of advice being given out. There has been a lot of talk about doing things, about getting the information with NHS Direct right, but in terms of pump-priming funding, which is what you need to create this innovative post, it falls between two stools. It is something new; NHS Direct is seen as something which is separate from the acute trust system. Once again somebody outside our bit of the NHS needs to say that is a good idea, we will do it, this is the sort of thing we want to develop. In the old days, six or seven years ago, there would have been no problem. There would have been a bit of HIV money left over at the end of the year and this was the sort of thing you would have been asked to bid for. Not any more. Equally, for one reason or another, HIV has somehow been left out of a lot of the modernisation issues. There are several things I could describe to you that we are doing with regard to virtual clinics, our Start clinic and a number of other things which have been done across the last three or four years which are right on for modernisation, but nobody has done them in HIV, which was not seen as part of the mainstream. We have suffered from doing things on our own, now asking for funding for things which are seen as having to come from HIV. Where is the HIV funding? It has gone. We are not fitting into other people's modernisation targets for the NHS. In a way we need access to some funding to get those things off the ground and it has not yet happened, but the intention is still there.

That brings us on to the government's strategy. We have covered this quite a lot. As with many other people, you have told us that not having a NSF is a huge disadvantage. A quick question about NICE. None of your drugs has gone to NICE yet, is that right?

(Dr Barton) That is right.

Have you asked for them to go to NICE? Are you pushing for that? Once something gets the NICE accolade, it is supposed to be funded. Would that be a way through?

(Dr Barton) Yes. As a clinician one receives NICE guidance through our trust internet but one has no direct contact with NICE and I am not aware that NICE have asked clinicians in the NHS for their views.

Dr Taylor: It could be something we push for. I think we have covered that question previously.

Julia Drown

Would not the problem with pushing things through NICE be the fast developing field?

(Dr Barton) Yes.

It would be a difficult project for NICE to take up because of the changes.

(Dr Barton) Sure. The London HIV consortium tried to set up a group which both Ade and I were on to look at new drugs and we started to look at this issue, in the absence of any central guidance. Immediately the issues which come up are: what if we do this piece of work in London and we decide we will or will not fund something, but out of London decides something different, we shall be back to the days where patients will all move? To do it sporadically, as is the danger, will lead to us back to the time when HAART first became available, where people were moving because they were told they could not get treatment in year. We are reluctant to go down those parochial lines, to try to do a mini-NICE locally, because whatever you decide you may be out of kilter with what other people have done. Our view is that any central rules about engagement for HIV patients would be helpful. Even if - heaven forbid - somebody says we cannot use this drug, if that is a decision which has been made we can argue against it. We may have to accept it in the end if that is the NHS decision but we can at least have an argument with somebody. At the moment we do not have anybody with whom to have that argument and the system is basically working to confuse any attempts at clarity of thought and planning. It is the lack of planning which will lead to a sudden hit when a new drug like 220 becomes licensed next year, which is an injectable HIV drug and there may be a sudden increase in funding. Who is looking out for that now and making a decision? You would expect NICE to do that but they have not and I do not know how one raises it to their level.

Is the fact that the whole publication of this strategy and then the expectation there was going to be a consultation on that and then a formal response which actually just turned into an implementation action plan for you an indication that this area keeps on not being a high enough priority for the government? Was it an appropriate response to have that implementation plan instead of a formal response to the strategy?

(Dr Barton) One of the things which is mentioned in the implementation plan which came out was yes, there had been a series of meetings around the country to get feedback and discuss it. Since then, to get the implementation plan, who is bringing together the people locally to do that? One would have wanted to see a list of named individuals in every part of the country who were then charged with bringing that forward, both in a senior and in a local trust position. It is "Who?" and I am aware that an independent advisory group is going to be set up but I am yet to understand how their powers to ensure implementation are going to be any greater once they are in existence than just on paper.

Chairman

May I come back to the role of GPs, primary care, in HIV and AIDS? It is an important area on which I wanted to get back to you. You made the point that a number of individual patients may prefer to go to primary care, GPs, as opposed to a GUM clinic. The evidence we have received is also to the contrary, that particularly younger people, fearing maybe their parents might be informed, would perhaps be reluctant. There are different views on this. Do you want to expand on that? Why do you feel primary care should be more important than it is at the moment?

(Ms Lowbury) There are three main ways in which primary care can play an important role in relation to HIV. I do not think in the main that primary care is going to be taking on the specialist treatments. Everyone who has HIV diagnosed needs to be seeing somebody with specialist expertise. To complement that, primary care has an important role to play. Possibly the most important thing, which has been alluded to a number of times, is the role in diagnosis. As we have heard one third of people in this country who have HIV still do not yet know they have it. Some of those people will have apparently minor things wrong with them with which they will go to their GP, or they may go to the optician, or they may go to the dentist. If those professionals were more aware of the signs and the symptoms of HIV, they could play a better role, either offering the test themselves, or referring to somewhere else where people could get tested. For me that is possibly the most important thing primary care could do better than they are doing at the moment. The practice is very variable. Some primary care clinicians are very very good, who are very up to date, but there are many others who are not. Given the problems we have heard about with late diagnosis, that to me is an imperative. Some people will prefer to go to testing in a less stigmatised environment where no-one should know what they are walking into the room for. The second thing GPs can do is to complement the specialist care people are getting from the hospital centre. They may be able to prescribe general healthcare for ongoing non-HIV-related issues. They may also be able to co-ordinate or enable people to access other types of care such as social care, such as mental health care, where the provision is often locally based and the GP has contacts and has the ability to access those services in a way which somebody based in a specialist treatment centre, possibly quite a distance away, may not be able to do. GPs and other primary care providers do have an important role to play which is complementary and for that reason they need to have an involvement in service networks, they need training and as with everything else we have been talking about, HIV and sexual health need to be identified in the list of priorities for GPs. The GP contract is currently under negotiation and I think it is very important that somewhere within that contract there should be something which enables GPs to see that this is an area they should address and that if they do, there will be remuneration for it.

(Dr Fakoya) I want to pick up on a number of things Ruth said with which I agree. Primary care, certainly for people with HIV, is very variable throughout the country and certainly East London is woefully lacking. The ability for people who are HIV positive to access primary care is quite abysmal.

Why is it so variable? Is it basically down to lack of knowledge of individual GPs or is it certain areas have more awareness as a consequence of greater demand? What are the reasons for this variation in your view?

(Dr Fakoya) It is multi-factorial. With some GPs it is a lack of awareness and there are training issues. Certainly in East London getting a GP is very difficult whatever your problem. That is an issue. We have been trying for the last 18 months to identify some GPs to provide primary care for the people we care for. The other issue is that because of the chronicity of HIV, people are living longer and the HIV clinics are picking up a lot of the primary care problems such as hypertension, diabetes; we are having to manage all those things because we cannot find GPs to deal with them.

Do you see any changes in terms of younger doctors, more recently trained? Are they better equipped, are the training schools addressing this in more effective ways?

(Dr Fakoya) I am not sure I can really comment on that. The short answer is that I have not really noticed.

(Ms Green) I just want to comment on GPs. Certainly in the area where I am working there are many single-handed GPs whose workloads are enormous. They are very reluctant at the moment to take on new patients, they have had to close their books and just cannot cope with the workload. I agree with Ruth about testing issues and GPs, but certainly in my experience GPs do not want to take ongoing care on board. I have just had a patient who has been taken off a GP's books because he is HIV positive, he is dementing, he is needing a huge number of services. He was only on the books temporarily, that has now come to an end and the GP says he cannot take him any more. I am having to go to the PCT and ask them to find a GP for this man. It will take over a month, four to six weeks, to find a GP, if we can. I do not know how close by that will be. The other thing is that you know your GPs who are going to be very receptive to HIV patients who are very helpful. I am as guilty as anyone in saying "Go to that GP". They in turn become swamped.

Do you see within the PCT structures the possibility that specialisation might offer a better primary care service? We have seen gradually, as I am sure you are aware, the development of particular GPs within a PCT who specialise, it might be in sports injuries or whatever. Do you see that as a possibility for the future? I take your point that the current arrangements are not ideal, but you are not arguing in principle against care within the primary care setting, what you are saying is that at the moment it is impractical, people are stressed out and cannot cope with it. Do you see the idea of specialisation as a possibility? Does that have any relevance to this area?

(Ms Green) We have to ensure that the GPs who would be in that had enough time to increase their knowledge and keep updated. As we have said before today, the arena of HIV is changing every month really. New medications are coming out, we are learning more about it and they will need help to keep up so that they can feel confident in providing that care.

Mr Amess

The government, having consulted its own lifestyle guru, has decided to embark upon a national campaign to alert people to risk taking. Could our two doctors and Ms Lowbury tell us what they believe the effect on clinical services for HIV and AIDS might possibly be as a result of this national campaign?

(Dr Barton) If it is successful, it will bring people forward for testing. That will further affect the access issues in genitourinary medicine sexual health clinics. If the intention is to target people who are well but worried, without any more specific targeting than that, then you will have not a targeting group but the general population. You may be doing lots and lots of tests of people who do not have any infection, hopefully reassuring them and hopefully that is good news, but they will be competing to get onto those clinic lists with people who have symptoms, who have a discharge, who have an ulcer, who have signs and symptoms which may well be associated with HIV. That is part of the problem and part of the way in which we are trying to modernise GU medicine even further by having nurse specialists doing asymptomatic screening, triaging people, trying to make the best use of the fragile resources and the overwhelming demand. For HIV, if we do find, as is our target, those thousands of people who are HIV positive but do not know it yet, if it is fantastic success and half those people are tested positive across the next two months, let us assume that maybe across the average 60 per cent of them will be on antiretroviral therapy, if that is another 6,000 people then you have just put £60 million on your drugs bill. It is all very well to think about getting people to come forward for treatment but you have to think of the economic consequence and be prepared for that. If the lifestyle guru says yes, the whole package, then we are delighted. What we cannot do is offer to fulfil a healthcare need which is being defined by a health promotion and by public health without the treatment and care services to deliver that.

(Dr Fakoya) I would agree with what Simon said. When we look at the things we have been asked to do before, we had the ante-natal testing campaign and the policy which has been very successful. However, in terms of extra resources, there were some resources for midwifery services but we did not get any extra resources to manage the clinics and the multi-disciplinary teams. We have been asked to do TB testing, which again we are in the process of implementing. There are monies to provide for a slight increase in the number of health advisers but in terms of picking up the estimated five to ten per cent of people who are currently infected with TB and HIV from that, we are not really getting the resources through to deal with that. Just to reiterate what Simon said, whenever there is a testing campaign, we are there to pick up the pieces, but we do not really get the resources.

(Ms Lowbury) The campaign which has had a lot of publicity over the last couple of weeks is the campaign about sexually transmitted infections generally. Given what this Committee has heard about the level of infection among the population, it would be very hard to make an argument that the public should not be better informed about sexually transmitted infections. The question is not: should there not be a campaign because the clinics cannot cope? Rather the clinics need to be enabled to deal with the demand which arises from a campaign. When it comes to HIV, certainly the strategy implementation plan talks about a more targeted campaign to encourage HIV testing. In light of everything we have heard today about undiagnosed infection and late diagnosis, there cannot be a good argument for that either. That would, if it were successful, increase the demand for HIV testing. Following on from that, when people are picked up who are positive, it will increase the demand for treatment and care services. However, if those people are not diagnosed until later in their infections, they are still infected and they are going to present later and need more inpatient care and complex treatment, more social care to pick up the pieces. All in all you need to have an integrated approach which involves public education along with everything else and it would be extremely short-sighted to abandon the public education just because the services are not currently equipped to cope.

Chairman: May I, in concluding the session, thank you all very much for a very interesting evidence session. We are most grateful for your co-operation. As this is the last formal session of the Committee before Christmas, may I wish everyone the compliments of the season.