Select Committee on Health Minutes of Evidence


Examination of Witnesses (Questions 180-199)

THURSDAY 24 JUNE 1999

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

  180. They have not looked for alternative forms of treatment.
  (Dr Peart) I think the main point is that the vast majority of people who are prescribed these drugs are prescribed them for relatively menial, social problems. They only have to compare the range of physical and mental problems produced by these drugs with the original condition and the two orders of magnitude.

Chairman

  181. Dr Peart, are you medically qualified?
  (Dr Peart) No. My doctorate is in nuclear physics.

  182. I will still ask you the same question. You used the term "vested interests".
  (Dr Peart) Yes.

  183. Can you say a little more about how you see these vested interests impacting upon the concerns that you have expressed to the Committee? Are you implying that the medical profession has too close a relationship with the drugs industry and that there is not the appropriate evaluation of drugs prior to them being placed in use within the NHS? If that is what you are implying, briefly, what would you feel should be done about this? Do you feel any of the procedures that the current government have introduced of clinical governance, the nice body that has been brought in to evaluate effectiveness of treatments, will impact in any way on the future experience of people who may have similar problems, not necessarily with the drugs you are talking about, but with other, future drugs?
  (Dr Peart) Too many questions. The first question was about the nature of the vested interests and how they apply to the drug companies and what should be done. Yes, I think the whole system of clinical trials, the monitoring of clinical trials and post market surveillance, is not particularly good in the case of benzodiazepines. In spite of that, all of the knowledge that exists today on the benzodiazepines was available in the 1960s. The big problem was that that knowledge never filtered through and down to the prescribers and to the patients. I think there was only one reason for that and that was withholding of information by the drug companies, and at successive layers, including the Committee on Safety of Medicine etc., a filtering process occurs. It is filtered out all the way down and the converse happens with patients' problems. There is a reverse filtering on the way up.

  184. We may well come back to some of these points because they are very important. Can I at this point bring in Mr Powell? We have met before some time ago and, as you said earlier on, the efforts of your group were certainly relevant to this inquiry being established. Could you say a bit about your own experiences, which have been very widely reported, and about the wider concerns of your group as they relate to our terms of reference?
  (Mr Powell) Could I say that I am also representing adult patients who have died and their families and also patients who are alive and who have received inappropriate medical treatment and been denied treatment to put that right and have been discredited. My son died in April 1990 of Addison's disease. It is a treatable condition which, unknown to my wife or I, had been suspected four months before his death.

  185. Was it suspected by the GPs?
  (Mr Powell) By the hospital.

  186. Where he was being treated?
  (Mr Powell) He was admitted to hospital in December 1989. He was an in-patient for four days and they suspected he had Addison's disease. It is a treatable condition. It invariably results in death without treatment.

  187. But you can prove that they knew of this possibility?
  (Mr Powell) Everything I am stating here is fact and I can give you the evidence. They suspected the disease. They said that my son needed an ACTH test to confirm the diagnosis. They did not inform my wife or I, nor did they discuss my son's condition with us during the four days, although we continued to ask. My wife was casually told by a consultant paediatrician my son had gastroenteritis, which we now know did not even fit the symptoms that he had because he had raised potassium which is something you do not have when you are vomiting; it usually lowers. The child was discharged and he became well. Five weeks later he was seen as an inpatient at the hospital by the paediatrician who suspected Addison's disease. The consultant told my wife there was no need to do anything to him. He did not inform her that the Addison's was suspected nor that the test was needed or had been postponed and as far as we were concerned gave my son a clean bill of health and we were happy to receive that. But unknown until after my son's death, the hospital had written to the GPs informing them that Addison's was suspected and that my son needed the ACTH test and to keep an eye on him in case he had a recurrent episode which could result in death. After the meeting of 18 January, which was the outpatient's appointment, the consultant wrote to tell him again about the suspicion of adrenal insufficiency and that my son should be referred immediately if he had a recurrence of vomiting or abdominal pain which are frequent to sufferers of adrenal failure. At the beginning of April 1990 (this is four months after the hospital admission) my son was seen on seven separate occasions by five GPs in the local health centre who had this information in the records. He was seen on 2 April and we were told there was nothing wrong with him. He was sent home from school on 5 April. He was seen on 6 April by a doctor. He was seen again on 11 April when he was vomiting and weak due to weight loss. These are all signs of adrenal failure. This was the only GP to look at my son's medical records. He told both my wife and I that he would refer my son immediately back to the hospital that day. He did not tell us why he was doing that, nor could we discuss the serious condition, but he knew that vomiting was a danger and that my son could possibly die. So his intention was to refer. Unfortunately, after his death it came to light that he did not refer him. The referral letter was typed after my son's death and it was backdated to the time when he was alive and a statement was made saying that he had been referred and I have now proven that that letter was written post-death and backdated. Both my wife and I went on a third consultation on 11th April because we were both worried and I wanted to hear the doctor say there was nothing wrong with him. On 15 April, which was Easter Sunday, we telephoned the health centre and asked for a doctor to come to the house because the child at this time could not walk unassisted. The GP said that we should call down at the local hospital and he would see him there, which we did not mind as at least the child would be seen. So we had to carry the child to the car and then from the car into the hospital. The doctor examined him, could not diagnose what was wrong, but he thought it was possibly glandular fever. He said that the child needed a blood test. At each consultation we gave the full history as we knew it to every doctor. He said that he needed blood tests and that they should be done on Tuesday 17 April because that was the Tuesday after Easter Monday. We accepted that.

  188. The hospital that you were told to take him to—
  (Mr Powell) It was the local community hospital.

  189. Which is staffed by GPs presumably?
  (Mr Powell) Yes, and out of hours, all weekends possibly. They would call the patients there rather than go round the houses.

  190. When your son had been to hospital before—
  (Mr Powell) It was Morriston Hospital near Swansea.

  191. Was this a different hospital?
  (Mr Powell) Yes. This was just his local community hospital. We accepted what the doctor said. We carried our son home. By this time he was losing weight as he was not eating. The following day, which was the Easter Monday, he started to vomit again, so we called the health centre and we had the first home visit. This was a different GP again. Five GPs had seen this child. We told this doctor everything. He examined my son and said that he needed a blood sugar test. Unknown to me low blood sugar is a symptom of Addison's disease also and the weakness suggested there may have been low blood sugar. He went to his car, came back and said that his test equipment was out-of-date and therefore he would not perform it, but what he said was, "The test that you need tomorrow should be cancelled. Bring your son in on Wednesday rather than the Tuesday, but if he deteriorates or continues to vomit then phone the health centre and we will have the child admitted immediately." The doctor went away. The next day my son wanted to go to the toilet, my wife assisted him—sorry, this is very upsetting—he collapsed and fainted on the bathroom floor, he was unconscious. My wife screamed and I went to the room. I immediately saw the child, ran down to the telephone downstairs, telephoned the health centre and asked for a doctor to come. The doctor who came was actually the doctor who had seen the child on 6 April, which was the second consultation. My son had regained consciousness but his pupils were dilated and his lips were blue, the relevance of which I did not know at that time. He was dying of adrenal failure. The GP looked at him, she took the full history, she was told about seeing him earlier, about the blood test and especially about the senior partner's view that the child should go to hospital. The GP refused to admit the child. She said there was nothing seriously wrong with him. She left. I telephoned the hospital where Robert had been suspected of Addison's disease, which was unknown to me, gave the staff nurse the full history and she advised me to believe in the GP: "If you are worried, Mr Powell, get the doctor out again." My wife was by the phone and the nurse told my wife the same because we were concerned that we had the proper information on what to do. So my son developed abdominal pain and I immediately phoned the health centre and this lady doctor came out. She looked at my son and again refused to admit him to hospital. There then followed a very heated argument. She then decided that she would, not because of the condition of my son but because we were insisting that that should happen. My sister came into my home around the time that the doctor was writing the referral letter. I wrapped my son in a blanket upstairs, prepared him to go, came downstairs and in the presence of my wife and my sister I asked the doctor if she had ordered an ambulance. She threw the referral letter at me and told me to take my son by car. She stormed out of the house and that was the last we saw of her. I put my son in my car, which the doctor did not know I had, and took him to hospital which didn't take very long because I went there quite quickly, as you would imagine. We got to hospital, he stopped breathing and died. Three days after my son's death I got access to the medical records because I asked to see them and in there were documents from the hospital confirming that this disease had been suspected, that the child needed the ACTH test and that the parents had actually been informed, so I was obviously very, very angry.

  192. Did you say that the hospital had informed you or the GP had informed you?
  (Mr Powell) The letter was from the hospital to the general practitioners and the letter was headed "Information—needs ACTH test. Parents informed".

  193. So the GP assumed you knew?
  (Mr Powell) They would have assumed that by that, but they obviously knew because this doctor was a senior partner who had seen Robbie on the Sunday and he knew that I had not told him, so the likelihood was we could not have known because obviously they had discussions before they came to see me. So I saw the records and I was outraged by this and I knew nothing about Addison's disease because we had just been informed by the coroner that it was a natural cause and there would be no inquest. Sadly, coroners are failing people in this country because there should have been an inquest. We made a request for an inquest. I even said there would be a second post mortem in the light of the events which led to my son's death, but unfortunately the decision not to hold an inquest was made before I knew that Addison's disease was suspected.

  194. Was it made on the basis of what was on the death certificate?
  (Mr Powell) Yes, but what is very interesting is the pathologist who performed the post mortem on my son omitted all that relevant information from the post mortem report. It was inappropriate for her to even perform the post mortem because that health authority later admitted liability for the death of my son. So it appears that there was a massive cover-up from day one.

  195. The clear lesson that you would want to point to from the tragic circumstances that you have been through would be a distinction in who actually carries out the post mortem to ensure that there is not the allegation that the person carrying out the post mortem is within the same organisation that may be at fault in respect of a death?
  (Mr Powell) That is in the Coroners Act. When negligence is alleged at a health authority or trust a pathologist employed by that trust should not perform the post mortem. You have got to remember that we did not know this to challenge it, but it is an important point because the pathologist had a conflict of interest. I can prove, although the medical records now refer to the ACTH test, the suspicion of adrenal sufficiency and everything else and the pathologist chose not to enter that information into the report and I feel that there should have been an inquest and there have been inquests in similar deaths by coroners and I strongly believe that the cover-up started there. I think coroners should give people, when there is alleged negligence, a full inquiry. I found out subsequently that the coroner, in the light of my allegations of negligence, did not even have preliminary inquiries and that is a matter of fact. Anyway, the GP came to the house, I saw the discharge notification and the letter from the hospital. I was so appalled by it that I decided to have it witnessed. I am uneducated man, I left school at 14, but I knew the events leading to my son's death and this information were crucial. I then found out that Addison's disease is treatable although not curable. So I asked a Reverend who I knew vaguely, who lived a few doors down, if he would come to my home and witness my son's medical records and take a contemporaneous note of the contents. The Reverend came to my house a quarter of an hour before the general practitioner came, this being the same GP that brought the records to me. He was quite shocked to see an independent witness there with a notebook. However, the Reverend had the notes, took a contemporaneous note of the contents, specifically the ACTH test, the fact that the parents had been informed and the fact that Addison's disease was specifically mentioned and the document mentioned a hormonal imbalance. The doctor went away. I asked that doctor subsequently if he would have an inquiry into the events leading to my son's death, an informal inquiry just to identify what, if anything, went wrong. He refused to do so. He left me with no other option but to make a formal complaint. Six months later, when I get my son's medical records, these crucial documents have been removed and substituted and to this day that has been denied. I have forensic evidence to prove that my son's notes have been altered, yet to date it has not been addressed. There is no mechanism to address it. The police are reluctant to look at these cases and I think that they should. There is no accountability within the NHS. The death was covered up and I went through the complaints procedure. I represented myself the first year which was a Medical Services Committee hearing by the Family Health Service Authority. The chairman treated me appallingly.

  196. This was to do with complaints against the GP, was it?
  (Mr Powell) I felt that my complaint was against the GP because although the hospital had suspected it and had probably been negligent by failing to tell me, the GPs could have retrieved the situation because they had seven opportunities to do that. I felt that everybody was collectively wrong. When I met the paediatrician after my son's death he actually criticised the GPs for failing to get back to him. I went through the complaints procedure. I eventually had a Medical Service Committee hearing. I proved that the doctors had stated many, many lies. I had the evidence to substantiate it: I had witnesses, I had the Reverend Thomas as a witness. None of our evidence was accepted. Four of the GPs were found not to be in breach of their terms of service. One was found to be in breach and that was the doctor who saw my son on the last day. She was given the minimal reprimand and she was told to conform in future to her terms of service. I then exercised my right to appeal against a decision of the four who were found not in breach to the Welsh Office. The hearing was set for three days, 17th, 18th and 19th March 1992. I had a barrister, I had a solicitor and a medical expert.

  197. We appreciate that this occurred within Wales and there are slight differences in the procedures that we need to learn from, there are some parallels. The equivalent, one assumes, in England would be the regional executive or what was then the regional health authority, would it not?
  (Mr Powell) I thought it was the same in England and Wales.

  198. We can look at that in more detail.
  (Mr Powell) It is in Wales this happened. I was on the understanding that England and Wales—

  199. There are similarities.
  (Mr Powell) The hearing was allocated three days. I was now allowed legal representation. I was not going to go to another hearing, even if I had to sell my house, and be treated in the manner that I was treated by that chairman. It came to light later that he was actually a magistrate. I just could not belief it. The hearing went on for three days, but because of a lack of time it had to be adjourned. Allegations were made by my barrister that my son's medical records had been falsified. The Welsh Office owned the records. They had introduced them as evidence and therefore they should have been keeping them safe during the adjournment. Six months later when we got back to the appeal hearing in September 1992 we found that the GP records have gone missing and they have been altered again. We bring this to the attention of the chairman who refuses any responsibility by saying, "It is nothing to do with me." He did not particularly care. We said we were not happy. We wanted him either to investigate it or call in the police. He said the Welsh Office were not responsible, it was not his fault and they were not going to look at it. So we then decided, after taking legal advice, to withdraw from the appeal. To withdraw from such an appeal you need the permission of the Secretary of State for Wales. We wrote and asked for that permission. Unknown to me and my legal team, the Secretary of State had an internal inquiry into my allegations that their procedures had been at fault. The internal inquiry confirmed, unknown to me, that the procedures were not at fault, that the Welsh Office had acted properly. The Secretary of State then gave me permission to withdraw but did not tell me that once I withdrew from that appeal there would be no mechanism to re-open it, there was no provision in law.


 
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