Select Committee on Health Minutes of Evidence


Examination of Witnesses (Questions 200-219)

THURSDAY 24 JUNE 1999

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

  200. So you closed down your rights to pursue the matter further?
  (Mr Powell) Yes, because I alleged that there was maladministration which the Welsh Office refused to address and refused to accept the responsibility for. For three years the Welsh Office denied categorically that my son's records were received by them by recorded delivery from a forensic document examiner. Two MPs failed to prove it. I then wrote to the newly appointed Secretary of State, William Hague, and I sent in all my evidence and he then agreed that "We were mistaken, Mr Powell. We apologise. Both you and MPs who have written on your behalf have been misled. We did receive the records prior to the commencement of the appeal which meant they were the Welsh Office's responsibility." There was an inadequate inquiry because like many terms of references in relation to inquiries, they never got to the core. They always leave out the important issues and that is what they did to my inquiry. It was concluded that the Welsh Office were at fault. I requested then, in the light of that report, that I have another inquiry. I had the appeal reopened because it was their maladministration that caused me to withdraw. They denied any fault. Three years down the road I can now prove that they were at fault even if the Welsh Office say they are not. I also made an application after the appeal for my costs which were in excess of £30,000. The Welsh Office refused it. I made a second application for the costs because we believed we had rightly withdrew. The Welsh Office refused that and they also refused to give me another inquiry.

  201. So you were not in any way legally aided at the time?
  (Mr Powell) You cannot have legal aid for an appeal.

  202. There is no provision in that situation?
  (Mr Powell) You have got to fund it yourself, which is very difficult for ordinary working people, it is practically impossible, but I was prepared to sell my home. To cut a long story short, I brought the complaint to the Parliamentary Ombudsman through my Member of Parliament. I did that shortly after the Welsh Office appeal. The Parliamentary Ombudsman advised my Member of Parliament to complain first to the Welsh Office and if we were dissatisfied to come back to him. We did what he said. We were dissatisfied. But then the Parliamentary Ombudsman said it had been taken outside his jurisdiction, he could not look at it, so there was no accountability. Later, when I proved that the Welsh Office had misled me and I had a letter to that affect, I asked my MP to make a complaint about the fact that we had been misled. He did that in April 1997. The Parliamentary Ombudsman investigated the complaint, but he also investigated what we had asked him to investigate back in 1992, which was quite strange because initially they had said he could not do it and now he did. But again the terms of reference did not investigate (a) where my son's medical records had gone and (b) whether I should have another inquiry into my son's death. After two years of investigation the Parliamentary Ombudsman criticises the Welsh Office, awards me £500 compensation for seven years of heartache and fight and says that my appeal costs should be paid, but the Welsh Office are now saying that I wrongly expanded the appeal so they do not want to give me the full costs. So there is a bit of a battle there at the moment. What also happened was, because of the complaints procedure failing me—and I must say, it fails everyone. Every person that I know who has made a serious complaint about NHS treatment is dissatisfied with the system. It is structured to protect the doctors causing the damage. Public money is being used. The doctor is being paid for giving the treatment, inappropriate treatment in some cases which causes death and then the Government is paying the doctors to cover up what has gone wrong.

  Chairman: We probably will be asking specific questions on some of these points in a moment or two. I know that Howard wants to ask you a question.

Mr Stoate

  203. Obviously it is an extremely harrowing case. How old was your son at that time when he died?
  (Mr Powell) Ten.

  204. This ACTH test, did the hospital plan to do it at all or did they say that they would only do it if he got ill again?
  (Mr Powell) What does "need ACTH test" mean to you? That is what it says in the medical records now, "needs ACTH stimulation test".

  205. Had they planned to do it?
  (Mr Powell) The child had high potassium and low sodium. Yes, they said that he needed an ACTH test in the medical records and did not perform it.

  206. Did they say who should have done it, the GP or the hospital?
  (Mr Powell) There is not a test that the GP would do. It is a hospital-based test. It was the hospital that would have done the test.

  207. And as far as you are concerned they did not make plans to do it?
  (Mr Powell) They did. What I said was, they did not tell me about it, but they said to the GPs that he needed the ACTH test. At the outpatients appointment—because I believe my son was given hydrocortisone treatment which they denied he was given—he improved. So the consultant then delayed the test, but he did not tell my wife or I that it was needed. When he said he needed the test, what different information did he have five weeks later to say that he did not have Addison's disease? In fact, the information was that he did have it yet he failed to do the test. I would also like to say about the court judgment because I did sue the health authority and the GPs for negligence and I think this is very important because the case was set for trial in June 1996. It was set for six weeks and with a lot of evidence against us and I think we could have exposed the system had it been allowed to proceed. However, a month before the trial the health authority paid £80,000 into court and admitted liability for my son's death, which got the GPs off the hook and they said that no individual doctor was to blame. So here we have a health authority giving away public monies saying they are not at fault yet my son died as a matter of negligence. The GPs then, at the same time made an application to the court to strike out my case saying that any damage that was being done to me and my wife post-death is not actionable because they do not have a duty to tell parents the truth after the death of a child. I refused the £80,000 compensation on a matter of principle because it is not about money. Although in suing for negligence the end result is compensation, for the bereaved parents' group money will never compensate. We wanted to know the truth, we wanted to know why our children died and if anyone was at fault and these people should have been made accountable in some way and that did not happen. The whole judiciary in my view failed people taking medical negligence litigation also because most of the cases are settled out of court, as one has done this week. They do not admit liability and they pay substantial damages into the court. Why should they be paying public money—and we are talking about six figure sums—to people when they are saying that they have not been negligent? I refused the £80,000. We went to court. The judge had discretionary power not even to hear the application from the GPs to throw the case out, but he decided in his wisdom that he would hear it in chambers for four days. After those four days he decided that a doctor does not have a legal duty to tell parents the truth, therefore we could not sue the GPs. My barrister, solicitor and legal team advised me to accept the £80,000 from the health authority for my wife's damage and that I should proceed against the GPs and ask for leave to appeal, which we did do and which the judge allowed us to do. However, the £80,000 that we were awarded was not given to us. It was held back because if the appeal failed we had to pay for the four days in court in Cardiff and for the appealing hearing. So a year later the case went to the Appeal Court in London and the three Justices ruled that doctors do not have a legal duty to tell the truth and my case collapsed. I was criticised by the judges for even taking the case to appeal. The £80,000 which we were offered for compensation was absorbed in legal costs and so we ended up with nothing, but the judges made an order for costs against me for daring to go to the Appeal Court. We asked for leave to appeal to go to the House of Lords and we were denied that. We then petitioned the House of Lords asking for leave to appeal. We also wrote to the Prime Minister and to the Department of Health highlighting the judgment and asking for comments. The Department of Health said it is inappropriate for them to comment, but I take exception to the fact that last week the Department of Health were here and they denied any knowledge of the judgment. The judgement is being brought to their attention by my solicitor and you will see from my appendix 9 that the documentation is there in my submissions.

Chairman

  208. I think we were a little surprised at the answers we received from the Department, but to be fair, I believe they have clarified those answers. I think the first witness who was asked a question about this did take advice and was aware of the judgment, but we did, as you probably know, ask for some information about this particular judgment because the judgment is crucial to much of what we are looking at in this inquiry.
  (Mr Powell) Exactly. I believe that the judgment as it stands compromises the NHS complaints procedure and anything else in relation to doctors' negligence. We went to the House of Lords. We wanted the support of the Government. We did not have it. We failed in the House of Lords and the case is now in Europe. I await to see whether or not it is admissible.

  209. So you still continue to battle.
  (Mr Powell) Yes, I do and I fight not only for my son but for all the other children that died.

  210. What you have told us is extremely painful, but from our point of view what you have shared with us is invaluable because you have shared the key points that are very valuable to this inquiry.
  (Mr Powell) I am sorry I have gone on a little bit. There is a lack of accountability that has to be addressed because without accountability there is no deterrent. There is no statutory duty during the course of the complaints procedure to keep verbatim notes. Inferences are drawn in the evidence and then you have a summary of that report. The inferences may be wrong, but you have got no way of checking that because it will not give you the evidence. So I think it is of paramount importance that there should be a statutory duty to keep verbatim notes and that the complainant is allowed to have those notes and if he wants to appeal to the Ombudsman, he can do that on the basis of all the evidence submitted during the course of the independent review. That is one recommendation. I think there should be a list of consenting complainants in every health authority and trust. There would be no confidentiality clauses there on behalf of the health authority and trust and people could then find out whether or not the complaint procedure and the complaints managers are serving the public as they should be. So I think that is something that would be very, very important and useful, a list of consenting complainants who can then discuss how they have been served. There is no mechanism in the NHS for if you have your complaint procedures exhausted and new evidence comes to light which has been withheld by the investigating authority. One case was that a GP communicated to the hospital that a child was suspected of having meningitis and had a rash. During the course of the complaint the trust denied that that information was communicated. The parents later, although they had all the medical records supplied to them, made them secure the document confirming that the health authority had been informed that there had been a rash. So that evidence was crucial to the inquiry. There is no mechanism now for that family to have that addressed. The Health Service Ombudsman—who is the final joke in the pack because although he is apparently independent, in my view they all sleep in the same bed, they are far from being independent—has got discretionary power which allows him not to investigate complaints when he should be doing it. You have got no right of appeal. He can judicially review his decision, but who has got the money to do it, plus who has got the expertise to do it when it is very rarely done? There should be a mechanism whereby if further evidence comes to light and you can prove has been withheld by that trust the inquiry should restart. I have mentioned the Health Service Ombudsman and about his jurisdiction. I think this Government in the new Health Bill should say that the doctor does have a duty to tell the truth when a patient dies whether as a result of his negligence or otherwise. I would also like to know whether or not the Welsh Office, who has been complacent in the cover-up of my son's death and who continues to refuse me an inquiry, will be called to this Committee to give evidence.

  Chairman: The Welsh Office, as far as I am aware, is not within our remit, but I think you have made sufficient points for us to take very close notice of the issues that you have raised.

Mr Austin

  211. We are principally concerned here with the accountability of the NHS and redress, but what you have instanced is a catalogue relating to professional incompetence, negligence and falsification of records, all of which I would have thought were professional misconduct. Were you at any time advised or have you made any complaint to the General Medical Council regarding the behaviour of any of the doctors involved in the case?
  (Mr Powell) Yes, I have put my complaint on hold because I have issued writs again the GPs for libel because they put a notice up in the health centre saying that I was a liar, that I distorted the truth and some of my allegations were in the realms of fantasy. So because of that on-going litigation at the moment I do not feel it appropriate to continue with my complaint to the GMC. There is too wide a gap between the NHS complaints procedure and the GMC. They only really look at serious professional misconduct. When you make a formal complaint to the NHS they do not really deal with disciplinary action. I am unaware of any doctors in my group who have been disciplined for their shortcomings. There is too wide a gap. There should be a different disciplinary hearing when evidence comes to light, but there is a conflict of interest because the investigating authority knows if they gave you the evidence against the doctor the likelihood is you are going to sue for negligence. So they are then going to stop the evidence going out and the doctor would not be disciplined because in their view he has done nothing wrong and there is nowhere to go but the GMC which people cannot complain about because it does not fall within their category.

Chairman

  212. Can I thank you for the moment. There will be some specific points we will come back to, but it has been invaluable what you have shared with the Committee. I am most grateful to you. Can I move on to Mr Thrower. Do you want to expand on what you started out saying and give us a bit more detail? Obviously I would draw your attention to the terms of reference because they are quite specific and you appreciate that we want to look especially at those areas they we have identified as they relate to your concerns.
  (Mr Thrower) First, can I thank you for having this inquiry and, secondly, for asking me to give evidence to it. My medical background is nil. My medical knowledge was zilch until we got to the stage where my son degenerated into his autistic state. What I have done since that point is purely as a parent. I had no background in campaigning on particular issues. I have simply followed what looked like promising leads and asked what looked like interesting questions and acted upon what pursued beyond that point. I had a considerable faith in the Health Service when I started and it has just gradually diminished over time. I have now reached the stage where my son's condition and the condition of what appear to be many other children like him—and I think we are probably talking here in terms of thousands—will eventually only be resolved in the courts. I think it is such a complex area and it probably is extremely difficult for the authorities ever to reach the stage where they admit that they have a problem until, on the balance of probabilities, the children win their cases in the courts, which I think they probably eventually will do, at which point the whole process must be halted and I imagine there will be some sort of inquiry as to how children degenerate into autism and perhaps some extra research will be commissioned to investigate the process. My evidence was fairly comprehensive and I apologise for its length, but I felt it was a story that was worth telling. It has thrown up a number of areas of concerns. Perhaps I can focus upon seven key areas which I emphasise are issues of principle rather than in relation to my son's particular case. Firstly, I am concerned that the Department appears to fail to investigate patterns of parental reports of damage. I understand that they might seem dismissive of anecdotes, but when they get a pattern of anecdotes I would have thought that was an area that was worth pursuing more diligently than they seem to have done.

  213. Do you have any suggestions as to how this might be done because I think this is common ground with one or two of the witnesses and this is an issue where we will have to draw some consensus as to how we establish it. Our first witness, Mrs Dowling, was on her own. We met a similar situation in two areas this week on visits as a Committee where people thought they were on their own and it suddenly established the same was true for a lot of other people as well. In these circumstances how might we draw together a broad picture in the way you are suggesting?
  (Mr Thrower) If I can come to two of my further concerns I think those will address that point. The second point is that there seems to be an entrenched reluctance to recognise the possibility of vaccine damage. I believe my son was damaged by vaccines and it is vaccine damage that I am focusing on here, but the principles are wider than that. There seems to be a prejudice that the medical treatment is safe and that the medical institutions and the establishment is in the right and parents are almost certainly in the wrong but just do not realise it. If I could just illustrate that point here. These pye charts are from the United States vaccine damage payments system and this is a break down by claims filed. You can see that a very large section of the total is to do with MMR, so it tends to imply that there is certainly in the States a recognised problem with certain vaccines and with other vaccines as well, of course and the compensation for about a third of those claims has been paid by the US. So I think that establishes a principle that hypothetically vaccines can damage children, but trying to get that admission out of the Department of Health is extraordinarily difficult. They basically do not want to address it at all. The third point, which I think is one of the most fundamental ones, is I believe there is a lack of independence. The agencies of the Department of Health, particularly the Medicines Control Agency, are clearly not independent. One would like to think of them as being independent, but they are public institutions and one would like to think that they were there to serve the public. I noted the comments of Dr Peart earlier that one does feel that because the immunisation programme in its entirety is a partnership between government and industry they work very closely with that industry and there is a blurring, at the very least, of the distinction between the client and contractor.

  214. So you have got a good deal of common ground with the points that Dr Peart was making?
  (Mr Thrower) Absolutely, yes. That came as an extremely familiar story. I do not believe that the MCA is sufficiently independent. Of course, if issues develop such as parents questioning whether the MCA is recognising a pattern of problems then of course it is the MCA's own reputation and systems that are in dispute and on the line and to some extent you are asking them to be judge of their own affairs which perhaps in human nature is not reasonable. There is a perceived lack of independence there as well. The fourth point is there seems to be rather weak regulatory action. If I can just illustrate that very briefly. It is a requirement to keep child health records for up to 25 or 26 years. In the case of vaccine manufacturers' records they are only required to keep those for six years. In the instance of degeneration to autism which has received a great deal of publicity in the last couple of years, a lot of parents may have had suspicions and I was one of the ones that had suspicions but absolutely no knowledge, but it takes many years to come to the realisation that you have come to which is that there may be a problem with vaccines. I had always been uncomfortable about the timing, that it had been in the weeks after he was vaccinated, but I could not make the connection. That happened when my son was one. I realised this when he was about nine or ten. You then go back to the vaccine manufacturers and they have destroyed all their records. I do not understand in a multi-billion pound industry why it is not a requirement of vaccine manufacturers to retain records for the same length of time as it is to retain child health records. It would be very easy. There would be virtually no cost to the public purse. I do not understand why that is the case and that is an example of weak regulation. It is an obvious deficiency and a cheap one to remedy. My fifth point is the failure to monitor autism. I know you will have seen in my evidence that this is a concern of mine. If I could just illustrate this with some statements from the Department: "There is no good evidence that the frequency of autism has increased," that is the Minister in October 1997. "The apparent rise in autism began more than ten years before the introduction of MMR," that is the Minister in June 1998. "We have been in touch with the Natural Autistic Society. The NAS's view is there is no evidence of an increase," that was the Minister back in 1997. "The true incidence of autism is uncertain," that is the Chief Medical Officer in March 1998. Of the two recent studies that were published two weeks ago, one of 498 children in north London and the other one of 92 of the legal cases: one said there is no robust data on the prevalence of autism and the other one said "rates are autism are rising but not because of MMR". There seems to be utter confusion as to whether autism is rising or not. I fully understand the ambiguity between whether autism numbers are rising because of better diagnosis or because of a genuine underlying increase in prevalence. That needs to be bottomed out. I would have thought that the first thing most people would expect to know, recognising that autism is a very severe and debilitating condition which completely devastates a child's life and also severely damages the quality of life of the family concerned, is whether autism is increasing. Perhaps in my naivety I had expected a graph on Tessa Jowell's wall that showed autism going up, across or, hopefully, down. The answer is there is no graph because there are no figures. I find that extraordinary and I think most people would find that extraordinary. I have written to a number of health authorities and asked them how they monitor autism and the responses I am getting are extremely variable, but a number of them have indicated very high levels of incidence and these are hard numbers based upon actual children. So there clearly is the indication of a ground for concern that autism is a problem out there and that somebody should be monitoring it in greater detail. Of course, this Committee recommended in January 1997 that the Department of Health establish a register on autism and I took that up with the then Junior Health Minister, Paul Boateng, and he dismissed it as being a recommendation to the previous Government, as though the fact the Government had changed had invalidated the recommendation of the Committee. I am not sure to what extent there is a commonality of the Committee's membership between this Government's time and the last Government's time.

  215. Mr Austin is here!
  (Mr Thrower) I would have hoped that there would be a consistency in its support for that recommendation. I do not understand why the Junior Health Minister should stand up and defend persistence in not monitoring it and then switch his answer to talking about meeting needs. Meeting needs is important—

  216. Have you any other key points before you conclude on our terms of reference because we want to ask some specific questions of witnesses before we conclude the session?
  (Mr Thrower) Two very brief concluding points, one of which has already been covered, that is the adverse reaction of the reporting system. I have here a document by the Adverse Drug Reaction Information Service which is published by the Committee on Safety of Medicines and the MCA and it cheerfully admits on the back page, "It has been estimated in various surveys that only ten to 15 per cent of serious adverse drug reactions are reported." I would have thought if you had an MOT system that only found ten to 15 per cent of serious faults in cars there would be an inquiry about it. I do not understand why the MCA is quite content to muddle along with such an ineffective system. I realise there would be a major embarrassment if they reformed the system and the numbers leapt as a sort of one-off change in the way the numbers were calculated, but I think that is an issue that has to be confronted. The final point is again one which has been covered by other people, which is that child health records are inadequate and incomplete. My son's vaccine batch number was not recorded and his health visitor records have all disappeared, but I would pay tribute to my local health authority which has shared my persistence in getting to the bottom of this and did eventually come up with a batch number for his second MMR, but there does seem to be a widespread problem and anecdotal evidence from other parents has indicated that frequently the child's records are incomplete. I do not understand why it is not a legal requirement, if necessary, to record the batch number because without the batch number you do not know who the manufacturer of the vaccine was and you cannot start legal action.

  Chairman: Thank you. What is interesting is that, despite the fact you have got diverse concerns, there are a number of common elements that we have seen already which is why we wanted to bring you together here even though you come in with substantially different concerns. We do not want to keep you here all day. We want to move into some fairly sharp questions on specifics. I would appeal to my colleagues to put those questions fairly briefly and could we have some fairly brief answers so we can get through a range of concerns.

Mr Gunnell

  217. The first question is on a matter which has not actually been specifically raised because perhaps none of you has experienced it. The Department of Health told us when they gave evidence a little while ago that many health authorities employ a patients advocate who will help patients in the case of individual complaints and whose job it will be to see them through the process of complaining. Have any of you ever been offered the help of a patients advocate?
  (Mrs Dowling) No, I have not.

Chairman

  218. You are not aware of any of your colleagues in your group having this service? Does anybody know anything about it?
  (Mr Peart) A) there is a great need for advocates to help with the benzodiazepine problem and b) quite a few of the members of support groups try and fulfil this role.
  (Mrs Dowling) Would that be the (?) that was in hospital years ago? Is that the same role?

Mr Gunnell

  219. No. It would be a person who was specifically appointed to help patients with their complaints, to make sure they handle their complaints in a way which is helpful to the patient and give the patient the best chance of getting their complaints answered and dealt with properly. The Department of Health made it clear that it was an option for health authorities that they could appoint an advocate, but they were not certain when we asked them to what extent this was a system that was used as it seemed to be entirely up to the health authorities themselves as to whether they employed patient advocates.
  (Mr Powell) I made a complaint about the falsification of my psychiatry records at one stage and I actually asked for assistance from the health authority and they did give me a person who came to see me. They did not inform me that that person existed, but I made that request. I think there is a mechanism that they can come and see you but I do not think they make it public.


 
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