Select Committee on Health Minutes of Evidence


Examination of Witnesses (Questions 220-240)

THURSDAY 24 JUNE 1999

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

Chairman

  220. So you found one?
  (Mr Powell) I did it to try the system, to see if there was someone there and I was given someone who understood the complaint fully but unfortunately the people who investigated it did not.

Mr Gunnell

  221. So she did not continue to help you deal with your complaint?
  (Mr Powell) She could help me with the facts of the complaint and then pass them on to the convenor.
  (Ms Pappenheim) We recently ran a workshop for our Haemophilia Society members on the subject of patients' rights and I think almost universally 70 or so people attending that workshop had never heard about any of the mechanisms for patients' rights, did not know about issues such as access to medical records, did not know about complaints procedures. That is one snapshot of a particular patient group who are relatively well informed and in frequent contact with the NHS. I think the message to be drawn from that is that the NHS is not merely proactive enough in letting people know what the mechanisms are. Also, with regard to the concept of the patients advocate, I wonder how such an advocate would come into play where you are looking at people who are suffering the results of treatment outcomes that took place over a 17-year period up until 1985/86. Almost undoubtedly the advocate would be in difficulty trying to help that particular patient group and it seems that because of the widespread nature of what is happened there is no mechanism and an individual patient advocate in one health authority would be inadequate to cope with the problems of an entire patient group who suffered damage through the same treatment.

Chairman

  222. Would an advocate have been of use to you in your circumstances?
  (Mr Elder) I think advocates are a pretty good idea, but I think that should be divorced from the Health Service.

  223. So totally separate?
  (Mr Elder) And operate quite independently. CHCs do a pretty good job anyway, but they can be quite stretched for much of the time dealing with so many different complaints. I think patient advocates are good but they must be autonomous in operations. I had the help of what they called a lay conciliator in my case, this was to do with the GP aspect of my complaint. He was a complete joke. The chap had started his training two or three months before. I do not know what his background was. When I asked they could not tell me. He was trying to get me to drop the issue. It was very extraordinary.

  224. So this person was actually employed by the trust or the health authority?
  (Mr Elder) The health authority[4]. If you cannot talk to the GP concerned, you contact the health authority and the health authority appoints a lay conciliator. He had minimal training. He had got no proper credentials. The chap I had was hopeless. When I talked to the health authority after that they were pretty embarrassed with what he had said in his short report. He was a silly and rather—

  225. So he was not helpful.
  (Mr Elder) No. The advocate is a bit different, but that person should be outside of the Health Service in my view, but linked, of course.

Mr Gunnell

  226. So the health authority can appoint someone specifically to look after the patient's interests when they have made a complaint and to see the case from the point of view of the patient and to pursue it from the point of view of the patient?
  (Mr Elder) Yes, but that person must be outside the Health Service, not employed by them or appointed by them, in my view.

  Chairman: Presumably most or all of you may well agree with the point about the post mortem that Mr Powell mentioned and I thought it was a very telling point, the fact that the post mortem was carried out in some circumstances by somebody within the same body that you may well have been complaining about. That raises issues of independence in respect of that process. So we assume there is some consensus round that.

Mr Gunnell

  227. So you would say that if an advocate is employed that advocate should actually be paid or employed by another body and therefore have some continuing independence?
  (Mr Elder) Yes, like the Health Service Commissioner's role. That is completely independent even though his remit is pretty limited.

  228. The concept is one which could be helpful provided the person had that necessary degree of independence from the system that was under investigation.
  (Mr Elder) The same way as the NHS complaints procedure should be finished off and an autonomous body established outside the Health Service to deal with patients' complaints.

  Mr Gunnell: It is a system which the Department of Health have made clear to us exists because some health authorities choose to use that sort of system, but it is obviously not a system which they recommend all health authorities to use and it would seem to me what one needs is something which all health authorities can use and have available for patients in these circumstances.

Chairman

  229. Mrs Dowling, in your circumstances who has undertaken this advocate role? Has it been down to your support group outside the service? What role has the community health council locally played in respect of advocating for patients effectively in your area?
  (Mrs Dowling) Initially the CHC were supportive in a business-type way by doing letters and things like that for us and then we said we wanted a committee of our own and since February we have had a committee of our own and they have now distanced themselves very much from us. Really, we do not getting a lot of support.

  230. So your group are more or less autonomous in a sense?
  (Mrs Dowling) Yes.

  231. Could I pick up a point on the issue of the duty to inform patients and relatives where something has gone wrong. This has come out in a number of points that have been made so far. What I would like to put up is that one or two of you have made the point that there should be a legal requirement to inform people. What has happened? Should this be the duty of the doctors concerned? Where it has gone wrong? Who should have that duty? Where should that legal duty lie?
  (Mr Powell) The duty should lie with the doctor to tell the truth after any treatment that a patient receives. Why should he have a right to lie about it? I know that you are calling the Medical Defence Union here to give evidence, but the Medical Defence Union and the Medical Protection Society advise their members, and have been for the last 50 years, to be honest when something goes wrong. Both those organisations in my case funded the GPs to have it thrown out on a point of law that they did not have a duty to tell the truth and I think the Committee should try and have that addressed.

  232. You give the impression that there is implied guidance of the kind you get from insurance companies after a car accident, i.e. do not admit any liability.
  (Mr Powell) It is not so much with the liability, it is establishing the truth, is it not?

  233. What I am saying is you are implying that there is a message abroad that they should not be open and honest. Clearly you went through the court process to try and establish a duty of care and a duty to inform which you failed to establish, which is an issue that clearly is very relevant to our Committee. You are saying that right at the outset there should be a legal duty, i.e. if something goes wrong like the way it did in your terrible circumstances then that doctor should know that they have a duty straightaway—
  (Mr Powell)— to tell the truth. The Medical Defence Union and the Medical Protection Society purport to do exactly that and they do not.

  234. You are saying they need guidance to tell them to do it.
  (Mr Powell) They say that but they do not mean it because when you read the complaints procedure it sounds fine. In theory it is good but in practice it does not work because behind the scenes all the procedures have been breached and we have got no right to have the information to prove that. I can prove that it happened in my case, but there is no mechanism to have it addressed. What I take exception to is every authority seems to say this is what we do and tells everybody publicly so it looks good but behind the scenes they do not do it. The Medical Defence Union and the Medical Protection Society were paying for these GPs to have my case thrown out because they did not have a duty to tell the truth. It is a contradiction and I think that should be addressed.
  (Ms Pappenheim) This is one of the most important points which has come out from our evidence from our patients, that clearly it was known to many of their treaters that they had suffered an adverse outcome from contaminated blood treatment because in a number of cases those individual patients had been tested for, perhaps, HIV or hepatitis, without consent, without their knowledge. In our evidence we have cited at least a couple of examples of patients who only found out accidentally, or the parents of patients found out accidentally, they had these viruses contracted through their treatment. So the issue we want to raise there is, first of all, informed consent and, secondly, the issue of saying to a patient, "We believe there is a likelihood your treatment has infected you, we wish to carry out tests." That is one of the things which has caused most distress, that people were tested without their knowledge. At least one person looked at his own records whilst he was carrying them from one part of the hospital to another and found he had hepatitis. We believe there should be an individual duty on the doctors, who had, obviously, reason to believe that a test was necessary, to inform the patient why they think a test is necessary and to inform them of the results once it has been done. We would also say on that point, where you have a large patient group who have suffered the same problem, there must be an onus on that health trust to say, "We have perhaps 40 patients here who we believe may have been treated and suffered the same outcome, and they have to be informed and tested." On that final point, we were in a haemophilia centre up north only within the last month or two—a haemophilia centre which treats 70 patients—and they have still to this day not performed accurate tests on that patient group to find out their viral status for hepatitis C, so his is still unfinished business as we speak now.

Dr Stoate

  235. Are you saying there was anonymous testing for HIV in your group?
  (Ms Pappenheim) Tests were carried out for hepatitis and for HIV and there was no systematic procedure for actually informing and counselling and revealing the results. In a number of cases people learnt about their viral status by letter, sometimes a photocopied letter from the consultant, without an opportunity to sit down and discuss what the implications of this virus were.

  236. So it was not anonymous because you are saying the results ended up in the patients' notes?
  (Ms Pappenheim) It was not anonymous, no.

  237. So there was HIV testing without the patients' consent or without counselling beforehand?
  (Ms Pappenheim) There has been testing which has gone on for HIV and hepatitis which has not had informed consent. It has not been anonymous because it has been in those patients' notes.

  238. You have firm evidence, do you, that blood was tested without the patients' consent and counselling beforehand?
  (Ms Pappenheim) We have reports from the patients themselves, the fact they have found out about their hepatitis by accident.

  239. Have any of your members complained about that specific issue?
  (Ms Pappenheim) One of the issues for this particular group is that they were never given any information at all about whether to complain—

  240. Once they found out they had been tested and the results were in their notes or they might have received a letter, did they take any action beyond that, as far as you know?
  (Ms Pappenheim) It is not something that I am aware of.


4   Note by witness: Lay conciliators' are not actually employed by health authorities. They apparently are appointed on an expenses only basis. Back


 
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