Examination of Witnesses (Questions 200-219)|
THURSDAY 24 JUNE 1999
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 meand 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.
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 appointmentbecause I believe
my son was given hydrocortisone treatment which they denied he
was givenhe 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 moneyand we are talking about
six figure sumsto 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.
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 Ombudsmanwho 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
independenthas 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
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.
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 himand
I think we are probably talking here in terms of thousandswill
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
(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.
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.
218. You are not aware of any of your colleagues
in your group having this service? Does anybody know anything
(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?
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.