THURSDAY 12 DECEMBER 2002

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

  700. 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.

  701. 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.

  702. 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.

  703. 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 their 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.

  704. 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.

  705. The PCTs particularly.
  (Dr Barton) Yes.

iobhain McDonagh

  706. 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 difficulties, 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.

  707. 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.

hairman

  708. 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.

iobhain McDonagh

  709. 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.

r Taylor

  710. 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 noticed 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. Now we need access to this funding to get new things off the ground and it has not yet happened, but the intention is still there.

  711. 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.

  712. 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.

ulia Drown

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

  (Dr Barton) Yes.

  714. 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 may lead to a sudden hit when a new drug like F20 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.

  715. 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 a question of "Who?" and I am aware that an independent advisory group is going to be set up but I do not understand how their powers to ensure implementation are going to be any greater once they are in existence than just on paper.

hairman

  716. 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.

  717. 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.

  718. 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.

  719. 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.

  720. 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 target 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 60% of them will be starting 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 5 to 10% 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.