Select Committee on Health Minutes of Evidence

Examination of Witnesses (Questions 80-99)


27 JANUARY 2005

Q80 Mr Burns: I do not want to get into screening because other colleagues of mine, I know, will be raising that. I do not want to get into emigration either because that is a slightly different issue as well. I am asking if you have evidence of any other developed country in the world where, if one turned up inside their borders, on holiday or whatever, and then presented oneself at a hospital and it was diagnosed that you had HIV or a number of other conditions, one would be able to get free treatment.

  Dr Evans: I am not aware of that, but I would not be expected to know, quite honestly. I do not know what other countries' policies are on that.

Q81 Mr Bradley: Peter, we have heard some evidence on costings. What is the up-to-date cost of HIV treatment? How does that compare with someone falling ill and using emergency services? How does that compare with an attempt to prevent someone having further infections?

  Mr Nieuwets: There are a few answers and a few things I cannot answer. First of all, combination therapy costs approximately £7,000. But that is just the combination therapy, that is not the sum on-cost, because most of the time on-cost for a patient is £12,000 altogether. That is what a patient approximately costs. If you can prevent that—and prevention, it is said, could cost up to a few pounds—if you look at what a PCT spends on prevention on HIV and what it spends on the actual cost of treatment, those two have no relationship to one another. One PCT could spend up to £3 million on treatment, and very little on prevention because HIV does not have a star rating. Teenage pregnancy has. They will try to prevent teenage pregnancy, but not HIV because it is not seen as important. On the other side, in some PCTs they still say—and sometimes I am surprised—"We don't have any gay men, we don't have any black people" and then you have to say to a director of public health, but the SOFIT data proves you have.

Q82 Mr Bradley: With the emergency services—

  Mr Nieuwets: I do not know exact costs on that, but if people come in through A&E they are much more expensive because it is also the time and everything being spent on them and they become an in-patient. It is very clear if people also have HIV and, for instance, they are dying of HIV. It was estimated a few years ago from Dr Beck that it costs up to £50,000 to £60,000 a year for somebody dying of HIV, not everything else, because somebody just does not die, it takes a long time. That is one of the problems that also some of my other colleagues put forward. It is, like, if you cannot treat, people will get ill and will need lots of A&E treatment, which is expensive, and then leave and will turn up after months again. One of the problems is often that people will shop around because they will be fearful to go to the same hospital because hospitals, lots of them, have administrators with good memories. If a name comes up, they say, "This patient hasn't paid their bill last time." Then you get into the issue of: Is it treatment or is it payment? What is the most important: to treat or to pay? Some people are very wary about that. They say, "But if I don't pay, they don't treat." It is also an enormous amount of tension within hospitals between administration and medical staff: Treatment or payment? Who has the loudest voice within the hospital? And it creates an enormous amount of problems for a community. According to the strategies, we are working against social exclusion, we are targeting vulnerable groups. The effect of this, in a way, is that we are targeting vulnerable groups but socially excluding them, not including them, and financially this has enormous problems. If you look at the numbers, numbers of HIV go up by 20-25% across the country. The costs, what PCTs get, go up by 10%, so the pressure on the services is growing, and a PCT says, "We don't have money," "Yes, they have money," says the Government. "It is in the baseline." But the baseline is based on SOFIT data of 2001 and has not changed. So there is a problem there.

Q83 Chairman: Mr Nieuwets, you mentioned tensions between doctors and managers in this whole area. Dr Asboe, without being specific about Chelsea and Westminster, would you concur with that picture? Is it one that you pick up from your colleagues elsewhere?

  Dr Asboe: I think in many areas there is a conflict. First of all, the criteria on which patients' eligibility is assessed are complex and difficult. In many situations, you are asking clinicians at the coalface, you know, at the point of entry, when patients are being tested, to make that assessment, an assessment that is difficult. Patients are often very traumatised in that setting and clinicians are not trained to make that assessment. It also puts them in conflict with their primary role. Making the basic assessment at that level can be very difficult. There is also a situation where patients may not be eligible for treatment, and it is not only that they are not eligible but the guidance is that if treatment is deemed to be necessary in order to save life or to prevent a life-threatening illness, then treatment must be offered immediately. But you may have one commissioner in one hospital who takes a criterion of a CD4 count of under 200—so a patient is very immune compromised, but not at this very point in time having a life-threatening illness—who will make the decision that treatment is warranted under those circumstances and you may have a clinician in a different hospital or on a different day who makes a different assessment. Then there is not only conflict between clinicians because the criteria are not very clear but you have conflict between the clinicians and the management, either of the trust or, at a higher level, the PCT level. So I think this conflict often is difficult and will be more severe in different trusts.

Q84 Chairman: If a patient is being treated for a range of conditions and certain of those conditions are free and certain chargeable, what impact does that have on you as a doctor treating these people? Who actually works out how much is free and how much is chargeable?

  Dr Asboe: That is very true. I work in the sexual health service as well and so obviously patients coming into that service, the sexual health or the STI component of it, excluding HIV, is completely covered. Okay. But as part of that service we are offering testing to everyone, and a proportion of those patients will test HIV positive. Then you have to turn round and say, "Well, we can treat your syphilis but we cannot treat your HIV." I think it comes back to the whole point: in a way—

Q85 Chairman: Could I just intervene. You can treat it but it would be chargeable.

  Dr Asboe: It would be charged for.

Q86 Chairman: How do you work out the proportion which is chargeable where surely there is an overlap between the treatment of the conditions?

  Dr Asboe: The treatment of HIV is very specific. You have combination antiretroviral therapy which is specifically for that condition. The only overlap with those drugs is the treatment of hepatitis B, and sometimes that is an issue. Some patients may be able to have their hepatitis B treated but not their HIV. In terms of their other sexually transmitted infections, actually the treatments are quite disparate and separate but obviously they can occur in the same person.

Q87 Dr Naysmith: You are acting as a kind of gatekeeper in this situation, are you not? You are deciding who has to pay and who has not. Is that a role that you are happy with?

  Dr Asboe: Absolutely not. It is very clear that the General Medical Council says in the duties of the doctor, the very first one, that you must make the primary care of the patient your first concern. You must work with your colleagues to ensure that the patient's best interests are served and that is in direct conflict with some of these decisions that are needing to be made. You may say you can refer them to the overseas officer, but, in fact, where is the clarity about who gets referred, how they are assessed and how often they are assessed? So there is major conflict.

Q88 Dr Naysmith: You must know that sometimes you are denying treatment to patients who do not have the money to pay.

  Dr Asboe: In practice, if we had a patient attending our service about whom we felt, from our assessment and in conjunction with the overseas officers within the hospital, there were questions about their eligibility, we would refer them onwards to see specialist legal advice, usually from the Terrence Higgins Trust.

Q89 Dr Naysmith: Does that cause you any other problems apart from the sort of ethical one?

  Dr Asboe: I think it is a problem for the patients. It may have been difficult for them to attend the service, they need to go outside the service to get this legal advice, and then often they are lost to follow-up because they never actually make it back into the service, they become part of the hidden population who are a threat with all the problems that HIV can lead to.

Q90 Chairman: In reality, again without asking you to comment about your own position, would it be fair to expect perhaps rather a lot of medical colleagues in your circumstances to turn a blind eye to requirements on charging and carry on treating? Is that not a reasonable assumption to make?

  Dr Asboe: I am sure that happens. That is because, in talking to my colleagues, we feel that is our duty as a care giver. We know that may put us in trouble with the trust, but, equally, the converse of that is that if you withhold treatment you may be in conflict with your duty as a care giver.

Q91 Dr Taylor: The impression is that it is unenforceable. You have said one is allowed to use treatment where it is necessary to save life. Is there a sort of time limit on that?

  Dr Asboe: I should say that it is your duty to use that treatment now to save life. It does not mean the patients will not then be charged for that treatment. It is not that it is free, but the circumstances in which you would invoke that and just get on and treat the patient—and then obviously trusts will have a variety of different views about whether they will chase the person for the money, how hard they will be chased, and where the patient stands on this, in terms of having been diagnosed with a life-threatening illness and being chased by debt collectors and the like. But I do not mean to give the impression that treatment under those circumstances is free.

Q92 Dr Taylor: Thank you for clearing that up. You have mentioned also that you refer things to the Terrence Higgins Trust for legal advice. Do you delay treatment while you get the advice, or do you treat and then go for the advice?

  Dr Asboe: Again, I think you would make a clinical assessment and if you felt treatment was immediately necessary, either for the person or, quite often, as we have heard—

Q93 Dr Taylor: Public health.

  Dr Asboe: Or in order to prevent vertical transmission—so if a pregnant woman came in we would get on and do that and then ask the questions later, of course.

Q94 Dr Taylor: What would you ask for legal advice about? Would it be simply: "Can I treat this patient?"

  Dr Asboe: We may have got a decision from the hospital side of things that this patient is or is not eligible for treatment, but I think it is very important that a different organisation, perhaps who will act in an advocacy role, also will—

Q95 Dr Taylor: When would you get that decision from the hospital, from the trust?

  Dr Asboe: If a patient comes in for HIV testing, let's say in a sexual health clinic, if it is thought that eligibility may be a problem, that would be discussed with the individual presenting for testing before they go ahead and have the test. They then proceed with the test and the result comes back positive. Then again it will be discussed. We will discuss it with the hospital overseas officer to get their view, and then, if it is a problem and there is no urgent medical problem, we would refer the patient to the Terrence Higgins Trust, first to clarify whether that was Terrence Higgins' view or whether there was a discrepancy there, and then obviously they would advise the individual about what their different options were.

Q96 Dr Taylor: Could you clarify the position when there is no urgency.

  Dr Asboe: That is a clinical decision.

Q97 Dr Taylor: Does that go on the protection of other people from the spread?

  Dr Asboe: No. Generally that would be an individual clinical decision about that person as an individual.

Q98 Dr Taylor: So it is an absolute minefield for you to work through.

  Dr Asboe: It is a minefield.

Q99 Dr Taylor: Could I go back a little bit to Peter. We are told that government targets are aimed at reducing newly acquired HIV infections; they are aimed at reducing undiagnosed HIV infections. What effect will these changes have on those targets?

  Mr Nieuwets: They become very difficult. Several people said when those targets came out, "We might achieve them if you build a very big wall around England—a very big one which no one can get through, neither getting in nor out." Then it might be achievable. But if it is an open country, it is unachievable—even probably within the country it would have been very difficult. Especially one of the factors now is that people go underground: you do not even know any more how big your undiagnosed group is. One of the other problems with the effect of these regulations is that with lots of partnership arrangements within community care, between people from the black African community and organisations, HIV organisations and other organisations, the trust within those very fragile structures is also falling away, so people do not trust each other any more. They do not trust medics, they do not trust PCTs, and everybody asks: "Who is doing what?" The chance of offering good community care is even going down the drain with this, so it becomes very difficult even to keep that on a level, especially then, over time, if money gets less and less. Because all the money is pumped into combination therapy and PCTs understand lots of times that money has to be paid to treatment. Community care is really the stepchild of this. It is like nobody is really bothered about this: "That is not really necessary." If you ask clinicians what is the most important thing about treatment, it is adherence. Good adherence is lots of times helped by good community care. If there is no community care, the adherence will drop and you will have even bigger problems, and financially it becomes a bigger problem. One of the issues is also that the way HIV is funded within PCTs across the country is very different. In some areas it sits very clearly within specialist services and it is more or less still ring-fenced. In other areas, it is in the PCT and has to compete with anything else that is in the PCT while it still officially sits in the specialist services' list. But decisions are made within PCTs and they are given power so they can do that.

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