Examination of Witnesses (Questions 220-240)|
THURSDAY 24 JUNE 1999
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.
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.
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.
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.
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
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.
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
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.
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
twoa haemophilia centre which treats 70 patientsand
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.
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'
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
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
(Ms Pappenheim) It is not something that I am aware
4 Note by witness: Lay conciliators' are not
actually employed by health authorities. They apparently are appointed
on an expenses only basis. Back