Select Committee on Health Minutes of Evidence


Examination of Witnesses (Questions 241-259)

THURSDAY 24 JUNE 1999

MRS ANN DOWLING, MR JOHN ELDER, MS KARIN PAPPENHEIM, DR REG PEART, MR WILLIAM POWELL AND MR DAVID THROWER

Chairman

  241. You can come back to us on this.
  (Ms Pappenheim) We may have to come back on that point, whether they have followed up that issue.

Mr Lewis

  242. You have all identified when things go wrong there is often a failure to take responsibility, a sense that the situation has often been covered up, and that is certainly how it feels from your perspectives. But another fundamental issue is how the NHS respond in terms of initially identifying there is a problem, whether it be poorly performing doctors, whether it be consequences of particular forms of drugs or medication. How do you think the system should be improved so that we have a situation where we are able to identify some of these problems at a much earlier stage when things have gone drastically wrong with the kind of horrendous consequences you have told us about today?
  (Mrs Dowling) The only comment I would make on that is that Mr Ledward's colleagues must have known he was making these mistakes because they were putting right a lot of these operations. They acted like a closed shop; the old boys network. And it still goes on. Why has it been going on all these years and why have they not been honest, as the gentleman along there said? Why can they not be honest?

  243. What you are suggesting is borne out by the evidence, but I am interested to know how you think that situation can be improved. Have you any positive tangible suggestions?
  (Mrs Dowling) I really have not until that sort of closed shop system, if you like, goes. I do not think it will ever go.

Chairman

  244. You think it is the nature of the medical profession, do you?
  (Mrs Dowling) I do, yes.
  (Mr Elder) I think one way of improving affairs would be to strengthen the health complaints policy, in other words have a strong, independent complaints policy. The effect of that would be to encourage better practice from medical practitioners. That has been shown to be the case in Scandinavia and also in Austria and other countries as well which I have found in my research.
  (Mr Thrower) On page 56 of my written evidence—and you probably have not got it in front of you—I made five or six points which answered that specific question. Firstly, statutory obligations upon pharmaceutical manufacturers to report problems. I think they are there but they require some form of independent audit. At the moment there seems to be no means of verifying whether they are actually doing that. Part of that process is also connecting up the parents with the pharmaceutical manufacturers and that links in with things like recording vaccines and so on. I think most parents have difficulty in making that link. The second point is the statistical methodology in the MCA's reporting system. I think that is also worthy of some form of independent validation. I am not sure that the MCA should be allowed to be their own judge of their own statistical effectiveness. The third point is that in the particular case of autism, if autism is suspected as an adverse reaction to vaccines, whether it is proven or not, there is a case for including that as a suspected ADR. At the moment the MCA say there have been very few reports of degeneration into autism but this is not surprising because degeneration into autism is not a recognised ADR, so it is a chicken and egg situation. The fourth point is that the yellow card system really needs to be given some sort of statutory force. I had a really quite nonsensical answer on that point where I was told that insisting GPs fill out a yellow card would not work because it would not be legally enforceable, they would have difficulty in practice in enforcing it, but this is the same organisation, the MCA, which is saying they are quite happy that the pharmaceutical manufacturers are doing their bit. So they are saying that the private sector will conform to the rules but their own employees will not, which I do not think many people would find very sensible. The fifth point is that an obvious way of improving the yellow card system is to reverse the polarity of it, call it a green card and tell the doctors to tick off the children after three months when they have had no adverse reactions, so that they are all positively clear. All you are talking about is pieces of paper. That would clearly then flush out the other figures and they would be subject to better monitoring. At the moment the yellow card system just does not work. The final point is where there is a suspected syndrome, as there is clearly at the moment with MMR, the MCA should be encouraged to actively seek out cases. There is a precedent for that because in the cases of suspected Gulf War Syndrome, the Department of Health has agreed with the MoD to write to all doctors and ask them to identify even suspected cases. I do not see why that could not be applied to adverse reactions to medicines in the case of children. It is exactly the same principle.

Mr Gunnell

  245. On the question of the formal complaints procedure which exists, I would like to check whether you were separately—or the people you represent—informed about the complaints procedure. Were you told how to use it? Did you use it? How long did it take? I just want to know about this formal complaints procedure which you have a right to know about. Were you given that opportunity?
  (Ms Pappenheim) I think the straight answer is that the majority of haemophilia patients who have been infected by contaminated blood were never formally informed of what had happened, or told this had happened to them, so to this day none have actually had a piece of information to say, "This has happened to you, this is the result". Still less were they advised that they might wish to take it up and complain. So that has been a complete void really. There has been no communication to inform them what has happened, still less any information about where further, if anywhere, they might take their problem.
  (Dr Peart) I think it goes back to the very lack of recognition and acceptance of the problem by prescribers and other authorities, and by definition if there is no problem there is no reason to complain. In all of our complaints and things we have attempted to do, the whole problem is refocused back on the clinical judgment of the prescriber, and this whole concept of clinical judgment should be re-assessed in terms of accountability and responsibility.

Chairman

  246. Taking account of the points which have been made about the closed shop, the way in which it is alleged that some doctors cover up—Mrs Dowling was making the point that there were presumably other gynaecologists who were dealing with the problems arising from the alleged malpractice—do you feel that the processes of clinical governance which have been introduced, the changes which are being introduced currently, will make any difference to the concerns of patients within your group?
  (Dr Peart) I am not sure what changes are being introduced.

  Chairman: The individual practice of doctors will be monitored, will be effectively checked on. Where perhaps there are questions about the appropriateness of prescribing in certain ways, somebody will be looking at prescribing patterns perhaps in a way which has not been the case in the past? Am I being fair? I ask Howard Stoate who is a GP.

Dr Stoate

  247. I think that is fair.
  (Dr Peart) This will be independently done and not by self-regulation?

Chairman

  248. That is a very good point!
  (Dr Peart) I think that is the crux of the matter.

  249. So if it was self-regulation you would have grave doubts about it?
  (Dr Peart) It does not work. By definition, it must impose bias, it cannot avoid it.

  250. So your message, loud and clear, is that for you and the patients to have confidence it needs to be completely independent and objective?
  (Dr Peart) Yes. I think another and very important point is a Freedom of Information Act with teeth, not the present proposals going through.

Mr Gunnell

  251. I wonder if you feel there ought to be other mechanisms of bringing people's notice to the fact that there is a formal complaint procedure in the NHS. Do you have any improvements which you could suggest? So that patients would know that if they need to, there are formal ways in which they can complain. I would ask whether you feel the complaints system we have is currently impartial and what could be done to improve its impartiality. In a way you have answered that in saying you need a separate body.
  (Dr Peart) That is a very difficult question to answer because in essence all of our complaints have led to stonewalling. To get through the system has virtually been impossible.

  252. So what system would you suggest should exist, so that that stonewalling cannot take place?
  (Dr Peart) I find that a very difficult question to answer on the spur of the moment. I would have to think a bit more about it.

  253. You have gone up to the Parliamentary Ombudsman and you remain disappointed by the system?
  (Dr Peart) We are in the process of doing that.

  Chairman: If any of you want to reflect on some of the questions and add further information after this session, clearly we would like to hear from you again. That is no difficulty.

Mr Gunnell

  254. You must know that it is the job of the Committee to come forward with suggestions to Government as to the way they could improve the system for patients in the NHS, as to the way they could ensure that some of the very great difficulties you have experienced do not continue to take place. We could do with your guidance, or guidance based on your experience, as to what sort of complaints procedures would be effective?
  (Mr Powell) Firstly, we need one that is accountable. The documentation which is given to the complainant is a small summary and does not go into any detail. There should be a document which explains specifically at every stage what will happen. If we can then prove the health authority, the trust, has breached these procedures, there should be a mechanism where you can go and have that addressed. What is happening behind the scenes is that clinical mistakes have been covered up by the investigating authority because they are not impartial. You have got self-regulation, you have to pay medical experts when you enter into medical negligence litigation. Even when you pay these people money, they do not always tell the truth. You have to challenge it. If they are not going to do it when they are paid, they are certainly not going to do it for nothing, are they?

Mr Lewis

  255. I am just wondering whether there is a consensus amongst you that what I have described as the privilege of self-regulation for the medical profession, it is time that that came to an end?
  (Dr Peart) Yes.
  (Ms Pappenheim) Certainly.
  (Mrs Dowling) Yes.
  (Mr Elder) Definitely.
  (Mr Thrower) Yes.
  (Mr Powell) Yes.

  Chairman: I think we get the general idea.

Mr Lewis

  256. Consensus.
  (Dr Peart) If I could make a quick comment on that. If all of society decided to play games by their own rules, society would just disintegrate.

  257. Okay. I understand that. Can I go on then to ask perhaps a more difficult question rather than eliciting a round of applause, which is always nice. Many professions are easy to look at objectively, and look at whether people are performing their duties to a standard you would want but I, for example, and perhaps other Members of this Committee, with the exception of Howard, as lay people, just say we are looking objectively at the practice of medical practitioners, how do you think we could have practically a system which enables lay people to make judgments about medical practice? Do you think it is feasible for us to do that?
  (Ms Pappenheim) Yes.
  (Dr Peart) Yes.

  258. Does anybody have any practical ideas about how we could go about that?
  (Ms Pappenheim) Speaking on behalf of a national patient group, I think patients are very well able and capable to understand the arguments and to take in the medical issues. In our particular case it is a question of weighing up the costs and benefits of a particular treatment, for instance what are the risks or what would have been the risk in this era of using contaminated products. I think the argument that we are making is that patients have not been treated in any sense as equal partners in that debate and given the access to have their voices heard. I think patients are well capable of engaging in it but in some of the areas there is no easy answer and they are not being asked, consulted and given the chance to have that debate with clinicians.
  (Mr Thrower) If I can just respond on a couple of simple points. I think the first thing is you need somewhere, some body, some organisation that people know is there and they can go to it. At the moment most people, I suspect, do not even know what is there and it is a muddle and there are limitations upon the powers of various bodies, including the Health Ombudsman, which critically is unable to comment on issues relating to the Department of Health. I think drawing a comparison with other industries, other walks of life, you know we have Ofgas, and a rail regulator and various other regulatory functions, health is probably more important than any aspect of life so I cannot see why there is not an independent Office of the Health Regulator or whatever you like to call it, an independent body with an ombudsman in a much greater form than the present Health Ombudsman, which people can go to, which covers all of these issues, which is totally independent, totally separate and which monitors what is going on out there but with hard data, a proper monitoring system, and can make sense of what is happening and provide an obvious port of call to parents. At the moment I suspect that most of us end up in the courts because we feel that really there is nowhere else to go, there is nobody else out there dealing with it.
  (Dr Peart) I would like to make a couple of points. Certainly most people I have been involved with, in fact as far as the benzos are concerned, they would understand and have more knowledge about them than the prescribers in any case. Secondly I think if there is deregulation and independent bodies then why not have university courses leading to full blown careers.

  259. Perhaps a question for Mr Powell really in terms of the performance of doctors. Most of us would accept that eventually situations where doctors are found to have made numerous mistakes—perhaps like in the case of Mrs Dowling where there was a number of patients going back over a period of time, there was evidence that a doctor had made all sorts of errors—lead to that person being struck off. In your situation, it would be difficult to put into words how tragic the conclusion of those mistakes was, there was a series of individual errors made by a series of doctors, and we do not necessarily know whether those doctors had made similar mistakes over the years or did it on a daily basis, there would be no way of knowing that. What would you have wanted? You wanted a full and frank explanation, you wanted people to take responsibility, you wanted honesty. If it had been found for example that in your son's case serious misjudgments had been made—there was no evidence of a pattern of that from the doctors, it was a one off in this case—what action would you have wanted to have been taken against the doctors concerned? One secondary point, the doctor that was found to be negligent to some extent, because one of them was, you said.
  (Mr Powell) Breach of terms of service which is slightly different.


 
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