Examination of Witnesses (Questions 241-259)|
THURSDAY 24 JUNE 1999
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.
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
(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
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 evidenceand
you probably have not got it in front of youI 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.
245. On the question of the formal complaints
procedure which exists, I would like to check whether you were
separatelyor the people you representinformed 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
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 upMrs Dowling was making the point
that there were presumably other gynaecologists who were dealing
with the problems arising from the alleged malpracticedo
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
(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.
247. I think that is fair.
(Dr Peart) This will be independently done and not
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.
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.
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?
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.
(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 mistakesperhaps 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
errorslead 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 madethere was no evidence of a pattern
of that from the doctors, it was a one off in this casewhat
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