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Daily transcripts
.
Hearing summary
23rd September 1999
Hearings this week focus on evidence from parents and hospital staff commenting on the
subject of tissue retention.
Today the Inquiry heard from Mrs Michaela Willis, mother of Daniel who died in 1993
after complex cardiac surgery at the Bristol Royal Infirmary. Mrs Willis gave evidence in
her capacity as Chair of the Bristol Heart Children Action Group (BHCAG). She told the
Inquiry about discussions she and others had on behalf of the BHCAG with the current
management of the United Bristol Healthcare NHS Trust on the subject of tissue retention.
She described how the Trust planned to work with the BHCAG to release information to
parents hearts and other tissues being retained following post mortems in Bristol.
The week’s hearings concluded with evidence from Professor Peter Berry, Professor
of Paediatric Pathology at St Michael’s Hospital, Bristol, since 1983. He outlined
the role of the paediatric pathology department, explained that post mortems accounted for
approximately 25% of the department’s workload and that a quarter of those would be
for cardiac cases. He discussed the pathologist’s independent role in coroner’s
post mortems and the use of, and responsibility for, tissue retained after a
coroner’s inquest once the cause of death has been established. Professor Berry
commented on correspondence he sent to consultants reminding them that tissue could not be
retained following coroner’s post mortems for any reason other than identification of
cause of death without written consent. He went on to discuss how consent was taken. He
concluded by discussing the format and purpose of monthly meetings between surgeons and
pathologists held to establish causes of death.
|
FULL TRANSCRIPT
Published by the Bristol Inquiry Unit
© Crown Copyright 1999
1 Day 55, 23rd September 1999.
2 (9.45 am)
3 THE CHAIRMAN: Good morning everyone. Good morning,
4 Mr Langstaff.
5 MR LANGSTAFF: Good morning, sir. Sir, today we are
6 continuing with our examination of the issue of the
7 retention of hearts and other organs, and the question
8 of consents for postmortem and the utility of
9 postmortems.
10 We will have two witnesses: first Mrs Michaela
11 Willis, who will speak essentially as to what happened
12 as between the Bristol Heart Childrens Action Group
13 Executive and members of the Trust when information came
14 to light that suggested there may well be retained
15 hearts; then Professor Berry, whose experience at
16 Bristol spans virtually the entire time-frame of our
17 terms of reference
18 STATEMENT BY MR LANGSTAFF:
19 MR LANGSTAFF: Before either gives evidence, perhaps
20 I should indicate for the benefit of the wider audience
21 and support the demonstration with some facts and
22 figures, that the Inquiry's fact-finding exercise goes
23 well beyond what is said orally in the hearing chamber.
24 It consists of a scrutiny of a number of documents which
25 are sent to us and an examination by the legal team and
0001
1 the Secretariat of suggestions and allegations which are
2 made and which this Inquiry has a duty to investigate.
3 It was said at an earlier stage in the course of
4 our hearings that information about the retention of
5 tissue and consents had come forward in something of
6 a piecemeal and slow manner. Undoubtedly, I suspect,
7 there was a suspicion behind that that the full picture
8 had not been painted.
9 Accordingly, a member of the legal team actually
10 went into the offices at the Trust and examined the
11 records that were available and were kept there in order
12 to see for ourselves what documentary material there was
13 which showed either that consent had been given or
14 consent had not been given, and to identify, so far as
15 we could, the number of cases.
16 May I pay tribute to the assistance we have had as
17 well from the Bristol Heart Children's Action Group in
18 identifying a considerable number of parents whose best
19 recollection was that they had not given any consent to
20 postmortem or to the retention of tissue; and to the
21 Trust for the co-operation that they have given in
22 helping us independently, as we have to, to establish
23 the facts.
24 What I can report, and I do it in summary form
25 because the Panel, I know, will not want to be burdened
0002
1 (nor will the Internet wish to be burdened, I suspect)
2 with the material that is available, and more
3 importantly, the documentary material which supports
4 what I have to say is inevitably confidential. There
5 are quite a number of parents whose names are known but
6 whose consent to the revelation of their name in
7 a public manner that is necessary to fulfil the duties
8 of a Public Inquiry has not been obtained. You, sir,
9 were very clear at the outset as to the respect which
10 this Inquiry must have for personal confidentiality.
11 Again, I am happy to pay tribute to both the Trust
12 for their concern for the same issue and the Bristol
13 Heart Children's Action Group for their assistance.
14 The position is this: that Professor Berry has
15 a database of postmortems which were performed in his
16 pathology department which covers the Bristol Children's
17 Hospital and St Michael's Hospital. There are 265 names
18 on his list in relation to children who died following
19 heart surgery or from a heart condition in the period
20 1984 to 1995. That is 265 names.
21 Of those 265 cases that came to postmortem, 45
22 were hospital postmortems, and as we know from evidence
23 we have already taken, hospital postmortems require
24 written consent before they may be performed. The
25 remaining 220 cases were Coroner's postmortems which do
0003
1 not require, legally, any consent from any relative for
2 their taking place. So in percentage terms, 83 per cent
3 of the cases that came to postmortem were Coroner's
4 postmortems.
5 That list does not include a further four cases of
6 postmortems which were performed at the Bristol Royal
7 Infirmary rather than in Professor Berry's paediatric
8 pathology department. He has assisted in the tracing of
9 those four cases. They were all Coroner's postmortems.
10 Of the 45 which required written consent, in all
11 but four of those cases we have been able to locate
12 either the original signed consent form or a copy of it,
13 or a reference in contemporaneous documentation to
14 written consent having been given.
15 It is quite plain -- and I shall come back to
16 this -- that the best recollection of a number of
17 parents is faulty in that when they thought on
18 reflection they had not given consent, in fact they had.
19 Of those four cases, we know -- and I am not at
20 liberty, for the reasons that I have given, to reveal
21 the name of the patient concerned -- that in one case,
22 although there is an absence of any written record of
23 consent, consent was in fact given because the parent
24 has told us that she asked for a postmortem to be
25 conducted.
0004
1 The other three are cases in which there has been
2 no suggestion from the parent or parents concerned that
3 they did not consent. There is a double negative there,
4 but it has to be put that way. There is, therefore, no
5 evidence that there was a lack of consent or evidence
6 that there was any objection by the parents concerned.
7 There is positive evidence (at the moment in written
8 form) from Professor Berry -- and he will answer to this
9 later today -- that in every case in which he conducted
10 a postmortem, there was consent. We heard yesterday
11 from Dr Ashworth that his practice was never to conduct
12 a postmortem without being assured to his satisfaction
13 that there was written consent. Dr Russell, I think, in
14 addition, in his statement confirms that position.
15 So the evidence before the Inquiry, in the absence
16 of any contrary evidence from those three parents, is
17 that consent was obtained, even although there is no
18 documentary record of it.
19 The Bristol Heart Children's Action Group has
20 prepared for the Inquiry an anonymised list which will
21 in due course be put on the Internet and be part of the
22 evidence before this Inquiry which records a number of
23 details as to the presence or absence of various
24 features in relation to postmortem retention of tissue.
25 There are some cases on their list which are not on
0005
1 Professor Berry's database. Of those, there are only
2 six which are within the time-frame of this Inquiry,
3 six, as it were, where there is a very substantial
4 overlap, and of those, three can be accounted for
5 because the postmortems were in fact carried out in
6 hospitals outside Bristol so they never came to
7 Professor Berry's department.
8 The other three cases appear to us at present --
9 I may have to report back to you upon this later -- not
10 to be within the terms of reference of the Inquiry
11 because the nature of the condition of the child
12 concerned does not appear to fall within our terms of
13 reference. We are following up the medical notes in two
14 of those cases to check whether or not those cases
15 should be our concern or not.
16 What that, comprehensively I hope, amounts to is
17 this: that the evidence presently before the Inquiry is
18 that in every case in which there was a postmortem there
19 was a consent for the postmortem.
20 I should emphasise that I say nothing about the
21 position in respect of the retention of tissue following
22 a Coroner's postmortem,, which has already been the
23 subject of some evidence, and nothing that I say is
24 intended to suggest that there was consent in any
25 written form for any such retention. Whether it was
0006
1 required or not is a matter which you will, I know,
2 later be considering, and have been considering this
3 week.
4 The matter I said I would come back to is one of
5 comment and therefore for you to make and assess and not
6 for me to suggest, save that it is a matter for you to
7 conclude, Panel, whether or not the fact (as it is) that
8 a considerable number of parents did not think that they
9 had been asked for nor had given consent to postmortem
10 when as it happens they had, says something about the
11 process; whether it may suggest that the process was
12 carried out at a time when inevitably concerns and
13 thoughts and feelings were elsewhere, making it
14 difficult to comprehend everything that was happening;
15 whether it may be a reflection of any inadequacy -- and
16 if so, it will be a matter for you to identify -- in the
17 way in which parents were approached and told of the
18 requirement and what it involved; and whether or not it
19 might imply any need for written information or for
20 a follow-up, counselling or informative service, or
21 conversation, so that parents are aware of the sensitive
22 issues. Nor does it necessarily resolve any question of
23 whether or not the parent concerned had full information
24 as to the length of time; nor whether they had a full
25 description of the purposes for which any tissue or
0007
1 organ was retained.
2 Sir, those are matters within your province rather
3 than mine. They are comments which may inevitably arise
4 from the factual matters which are all that I am
5 entitled to put before you, and do.
6 I hope that is helpful at the start of today and,
7 as it were, clears the air, so that we know where we are
8 before we begin today's evidence.
9 THE CHAIRMAN: Yes, Mr Langstaff. I am grateful to you for
10 that. Obviously we will need to take account of what
11 you have just told us in due course.
12 May I echo the thanks you gave to all of those who
13 have taken part in this exercise. We pay tribute to
14 them because it was clearly a very important exercise.
15 On the last point you make around comments, you
16 may rest assured that the Panel is concerned with and no
17 doubt will in due course express views on the very wide
18 question of communication between doctors and other
19 health care workers and patients, and what you just
20 talked about is clearly a subset of that large issue.
21 MR LANGSTAFF: Sir, with that introduction -- it is perhaps
22 one of the longest fanfares there has been in the
23 history of this Inquiry -- can we have Mrs Michaela
24 Willis?
25 Mrs Willis, will you stand, please, to take the
0008
1 oath?
2 MRS MICHAELA WILLIS (Sworn):
3 Examined by MR LANGSTAFF:
4 Q. Mrs Willis, you are Michaela Willis and you like to be
5 called Michaela?
6 A. Yes, thank you.
7 Q. You are the Chair of the Bristol Heart Children's Action
8 Group?
9 A. I am.
10 Q. You have been such since the AGM of that group in
11 September 1998?
12 A. Yes.
13 Q. You came into the group because of your own experience
14 as the parent of Daniel, who died at a week of age in
15 the BRI?
16 A. Yes, in 1993.
17 Q. So that all understand, you know, I think, that I am not
18 going to ask you any more about your own experiences at
19 that time so far as Daniel is concerned, because the
20 function of your evidence to us today is concerned with
21 the questions of retention of tissue?
22 A. Yes.
23 Q. You speak to us not only from your own perspective but,
24 as I understand it, to reflect things which have been
25 said to you by those in the Heart Children's Action
0009
1 Group?
2 A. Yes.
3 THE CHAIRMAN: Mr Langstaff, of course Mrs Willis knows we
4 have had her statement and we have all clearly read it
5 and taken account of it.
6 MR LANGSTAFF: I am grateful, yes.
7 So far as this issue is concerned, you made
8 a statement -- let us look at it on the screen --
9 WIT 221/1, that is where your statement starts, does it?
10 A. Yes.
11 Q. If we go through, please, to page 9, after
12 a paragraph beginning "finally ...", we see your
13 signature at the bottom of the page?
14 A. We do.
15 Q. This is a statement which you have prepared yourself?
16 A. With assistance, if you want me to tell the truth.
17 Q. You have to! You set out there how you came to have
18 a dialogue with Mr Hugh Ross, who has given evidence
19 about the issue of the retention of hearts, and
20 Professor Berry and Mr Ian Barrington?
21 A. Yes.
22 Q. In general terms, to what extent do you consider that
23 the Trust, as it is managed now, is the inheritor of
24 rather than the creator of the problems to which you
25 speak in your statement?
0010
1 A. It is obviously very difficult because I know Mr Ross
2 and Mr Barrington particularly, they were not involved
3 with any of the problems, but Professor Berry obviously
4 was there at the time a lot of this happened, so it is
5 obviously very difficult, but it is a problem that
6 happened at the UBHT and if you take a job on, then
7 unfortunately you have to take what comes with it.
8 Q. When was it that you first appreciated that tissue might
9 be retained?
10 A. I met Helen I think -- Mrs Rickard, I am sorry -- in
11 1996, and that was the first time that I realised that
12 there had been tissue retained, but I assumed, and
13 I only did assume, that it had been in specific cases.
14 It was my fault, because I did not dig into it any
15 further. It was my assumption.
16 Q. You say "cases" in the plural?
17 A. Yes. It was slightly afterwards I found out about the
18 other case, but it was 1996 I found out about the first
19 retention.
20 Q. At that stage in 1996, you knew of two cases?
21 A. Yes.
22 Q. And you knew because of personal contact, personal
23 information?
24 A. Yes.
25 Q. Knowing that, in the middle of 1996, did you make any
0011
1 further enquiries about it?
2 A. None at all.
3 Q. What was the main focus of the Heart Action Group at
4 that time?
5 A. There was no Heart Action Group at that time. In 1996
6 there was a group of, I would say, between 20 and 30
7 people who met and it was an informal group, it was no
8 more than that.
9 Q. What was the main focus?
10 A. Purely support, really; nothing more. Just parents who
11 had been in the same situation and they were trying to
12 find out answers. I think in hindsight if we had got
13 answers at the time, we probably would not have been
14 here today.
15 Q. So what was it that inspired the 20 or so of you to come
16 together, just briefly? Was it the Dispatches
17 programme?
18 A. No, it was ITN in April 1995. It said that there were 9
19 out of 13 deaths at the UBHT for the arterial switch
20 operation and parents were being counselled. We tried
21 to get in touch with the UBHT. There was nothing
22 actually set up at the time. We rang West Country.
23 They put us in touch with other parents who rang in.
24 That is where it formed from, and more added when the
25 Dispatches programme came out.
0012
1 Q. So at what stage did the informal grouping formalise
2 itself?
3 A. In June 1996, I would say, when we first called for
4 a Public Inquiry.
5 Q. You were a member -- were you on the executive before
6 September 1998?
7 A. You say formalise, the Bristol Heart Children's Action
8 Group did not actually form until 1998, March. There
9 was no committee as such before that; it was just purely
10 anybody did what they could; it was not formalised.
11 Q. So March 1998?
12 A. That was the actual action group, yes.
13 Q. From the beginning, were you one of the leading lights?
14 A. No. No, I had always tended to work on my own and much
15 preferred to do things that way. I do not actually know
16 quite how I ended up here, to be perfectly honest.
17 Q. In any event, you became the Chair in September 1998 and
18 have been since?
19 A. Yes.
20 Q. At some stage you became aware, did you, that the number
21 of hearts retained was more than the two you had known
22 of?
23 A. It was often a topic of discussion at meetings. People
24 wondered if it had happened elsewhere, to other
25 children, and people were asking how we could actually
0013
1 go about finding this out, so that is when we met with
2 the Trust and started to ask about could we actually set
3 up some sort of information system, a letter backwards
4 and forwards, they could enquire whether or not their
5 child's organs had been retained, but again, we naively
6 assumed that the answer was going to be no.
7 Q. You say at page 2 of your statement, paragraph 3, that
8 it was not until a meeting on Thursday 4th February that
9 you finally received information from the Trust as to
10 the full devastating position. You say who was present
11 and that you were told then that the Trust had in its
12 possession at least 179 hearts.
13 That is in the context of having said, at the foot
14 of the previous page -- if we just have a quick look at
15 the foot of that -- saying that specifically since
16 October 1998 you raised the question of retained hearts
17 on a number of occasions, seeking reassurance that the
18 cases you knew of were the only cases of their type.
19 That was the two, was it?
20 A. Yes, we had asked, as I said before, about setting up
21 a letter to see if there had been any other cases and we
22 were seeking, as I say, a reassurance that there were no
23 more. Mr Ross did say, I believe, in November that
24 there were other cases, but he did not give us a number.
25 Q. When did you say, I am sorry?
0014
1 A. I would say, I believe it was in November; it may have
2 been October but I believe it was in November, we had
3 a meeting and that was with Mr Curnow and Ian Barrington
4 and Mr Ross, but again there were no figures mentioned
5 at the time, but he did say there were more cases. That
6 is when we started to work on finding out how parents
7 could get the knowledge as to whether or not it had been
8 retained.
9 Q. Can we put a date on this. Can we have on the screen
10 UBHT 309/40? It is a letter to Mr Hugh Ross. Is this
11 from you?
12 A. Yes, it is.
13 Q. 18th August 1998, and obviously you have been in contact
14 with him. If we can go over to the next page,
15 paragraph 5:
16 "You will be aware that Helen Rickard discovered
17 from reading her daughter Samantha's records that
18 Professor Berry had retained her daughter's heart. Helen
19 recovered possession of Samantha's heart during
20 a meeting with Professor Berry and Ian Barrington after
21 securing the permission of the Coroner."
22 Then the next paragraph:
23 "We are aware that this is not an isolated case
24 and many parents are fearful that Professor Berry has
25 taken possession of their child's heart without
0015
1 permission and we ask that we are supplied with a list
2 of which children have had their organs retained in this
3 way."
4 So 18th August 1998?
5 A. Yes.
6 Q. And you are saying that at that stage you knew there was
7 more than one?
8 A. Yes, I knew there were two.
9 Q. And indeed, you are suggesting you wanted a list?
10 A. Yes, obviously that was not practical, but it was one
11 way of entering into the conversation. Because of
12 confidentiality they were not going to hand over a list,
13 but it was a way of entering into some sort of
14 communication about this.
15 Q. A list indicated anyway that you had in mind there were
16 probably more than two?
17 A. No, to be honest, naively, it was probably just the way
18 the letter was written. Really, I honestly at that time
19 did not believe there would be more than a handful.
20 Q. So at least a handful, anyway?
21 A. Possibly, yes. It is not my profession, I would not
22 have a clue, to be perfectly honest. I would not have
23 had a clue, anyway.
24 Q. If you had that in mind, in August you were thinking
25 there may well be a handful. It is plain, going back to
0016
1 your statement, back to WIT 221/2, the top of the page,
2 that you did not think the cases you knew of, the two
3 cases, were the only cases of their type. You thought
4 there was more than that?
5 A. Purely because people were asking, they wanted to know,
6 because obviously Helen had a reasonable amount of media
7 publicity and it put it on people's minds and people
8 were asking the question, so we were seeking
9 clarification of what the situation was.
10 Q. You asked and were told that there were more than two?
11 A. Yes.
12 Q. So there was no secret about that at that stage from the
13 Trust?
14 A. This was not in August, though. I mean, we are talking
15 later in the year before this happened. I seem to have
16 in my mind this was November, that Mr Ross said that
17 there was a significant amount, I believe the words
18 were.
19 Q. I think you probably have in mind a meeting of
20 2nd November, UBHT 307/179. This is a letter of 6th
21 November and it is, I think, to you from Hugh Ross:
22 "I write further to our meeting with Malcolm
23 Curnow and yourself on 2nd November 1998."
24 Did you go to a meeting on 2nd November with
25 Malcolm Curnow?
0017
1 A. Yes.
2 Q. On 18th August you write saying please let us have
3 a list of all those parents whose hearts have been kept?
4 A. Yes.
5 Q. Knowing there might be more than two, but not knowing
6 how many there would be?
7 A. Yes.
8 Q. Within six, seven, eight -- within a couple of months,
9 at any rate, you have a meeting arranged to which you go
10 in order to discuss that, amongst other issues?
11 A. Yes.
12 Q. And issue 1, retention of organs, you set out the
13 position that you and the Trust both shared, "keen to
14 resolve the outstanding questions and concerns of
15 families on this issue", and you agreed the approach,
16 which is then set out.
17 You write to all the parents that had expressed
18 concern at the issue and asked parents for permission,
19 and when permissions were received you would forward
20 them to Mr Barrington, and the Trust would then reply to
21 each family?
22 A. Yes.
23 Q. So the problem with giving you a list --
24 A. Obviously it was confidentiality.
25 Q. That is not something you objected to?
0018
1 A. No, not at all.
2 Q. Because your position would be, as I understand it --
3 A. Because the boot being on the other foot, we would not
4 have given the Trust a list of our members either, so it
5 works both ways. We were quite happy with that
6 situation.
7 Q. So at this stage no problem in the approach that was
8 being taken, or the answers to the questions that you
9 were asking?
10 A. No, not at all, because, again, it being our fault, we
11 assumed that there was not a problem.
12 Q. You assumed --
13 A. "Problem" probably is not the right word to use, is it:
14 that there had not been many other organs retained.
15 Q. Again, can we just look briefly through the letters that
16 followed? UBHT 309/54 --
17 A. Can I just say something? I am absolutely freezing
18 here.
19 THE CHAIRMAN: I am sorry, there is a problem that it does
20 veer between the tropical and the arctic. The Panel on
21 my right occasionally come equipped with gloves! If you
22 will forgive me, I apologise, Mrs Willis, I will try and
23 have something done at the break. Can you survive until
24 then?
25 A. Yes, thank you.
0019
1 THE CHAIRMAN: You are being offered a woolly pullover, but
2 we will get back to the evidence. At the break I will
3 have it looked into.
4 MR LANGSTAFF: If hypothermia sets in to the extent you want
5 a break, please ask for it.
6 UBHT 309/54. This is a draft letter. If you just
7 look through it, this is one of a number of drafts that
8 was being considered, was it, by the Trust and by the
9 Action Group?
10 A. Yes.
11 Q. So there were discussions, were there, about the form of
12 letters that were going to be sent?
13 A. Yes, there were.
14 Q. And efforts were made between you and the Trust to agree
15 the way in which parents should be approached?
16 A. Yes.
17 Q. Was there a concern expressed by anyone to whom you
18 spoke in the Trust that some parents might not be happy
19 to hear about the prospect that their child's heart had
20 been retained?
21 A. Yes. I cannot tell you who it was who brought it up in
22 the Trust, but if I remember correctly, we said we would
23 offer it out in the newsletter, if anybody wanted to
24 know, they could ring one of the executives of the group
25 and then we would actually send them a form, so it was
0020
1 not a case of us giving everybody the choice -- it was
2 the case that everybody could have the choice if they
3 wanted to know, then we would give them the opportunity
4 to get in touch with the Trust. It was not a case of
5 saying to everybody in the group "you will find out";
6 there was a matter of choice with it.
7 Q. So the parents in the group differed, did they, in their
8 approach?
9 A. Yes, because obviously some people do not want to know,
10 and it is everybody's own choice.
11 Q. So the freedom of information which you make a plea for
12 in your statement is just that; it is not insisting that
13 people should be given information whether they want it
14 or not?
15 A. No, that is it; it is their own choice.
16 Q. Can we have a look at 307/186? This is a letter from
17 Mr Ross to Ms O'Brien, the Secretary to this Inquiry,
18 which by this stage had been opened here in Bristol.
19 Let me just go through the information which is there.
20 The issue of retention of organs had obviously
21 come to this Inquiry's notice and Mr Ross, giving
22 information "not yet complete, but hopefully will
23 suffice for the decision I have requested of you", and
24 he deals with the question of consent.
25 At the bottom of paragraph 1:
0021
1 "Subsequent to Coroner's enquiries, reports,
2 et cetera, the hearts were generally retained for
3 further study, teaching and audit. I emphasise that
4 this was and remains common practice across the UK,
5 although I understand that practice may now be
6 changing."
7 He gives an estimate he says comes from Professor
8 Berry that over 90 per cent of hearts were retained in
9 whole or in part.
10 Obviously this letter was not addressed to you and
11 there is no reason why you should have seen it, but the
12 information contained in it: did you know that by the
13 end of November?
14 A. No.
15 Q. So you were talking about sending letters, appreciating
16 that the problem may be much wider than you thought?
17 A. Yes, but that was all.
18 Q. You had not actually contemplated that it was this wide?
19 A. No, definitely not.
20 Q. Do you say that that information was held back from you?
21 A. I would have hoped, in all honesty, because over
22 a period of months, not just on this subject, we had
23 developed a relatively good working relationship between
24 Mr Ross and Mr Barrington, and I would have hoped by
25 then that they actually would have told me. It really
0022
1 saddens me, I have to say, because I really thought
2 I got on quite well with them and the fact they did not
3 tell us, I cannot quite understand why.
4 Q. Did you ever ask them in what percentage of cases?
5 A. I did not, no.
6 Q. Presumably, if you would asked them that, the way in
7 which they had approached you would give you no reason
8 to think they would not have told you the percentage?
9 A. Not necessarily, because at the meeting in November --
10 I think you showed me November 2nd -- Mr Ross did say
11 that there was a substantial amount, but he gave me no
12 more than that. So that would have been an ideal
13 opportunity to have given us some information.
14 Q. And you did not press it?
15 A. I did not press it further, no.
16 Q. You did not say, "how substantial is a substantial
17 amount"?
18 A. No, I did not at all.
19 Q. I think we have heard, and may well hear, that at that
20 stage the Trust themselves may not have been certain how
21 many hearts they had retained in respect of children who
22 had died of a heart condition or following heart
23 surgery. Certainly, that is the information you have
24 had since, is it not?
25 A. I thought by November, I thought -- was that not when
0023
1 you received your letter saying that there was --
2 Q. Over 90 per cent, most hearts retained under Coroner's
3 rule 9, and Professor Berry estimates that over 90 per
4 cent of hearts were retained in whole or in part. It is
5 still at the stage of estimates, is it not?
6 A. Yes, but you pretty much guess at this; it is in big
7 numbers.
8 Q. Your next meeting after the meeting in November was
9 when? Was that --
10 A. 4th February.
11 Q. So between the beginning of November and 4th February,
12 there had been correspondence about how to approach
13 parents, had there?
14 A. Yes, there had.
15 Q. You had not asked further about clarification for the
16 substantial number?
17 A. No, because bearing in mind also, the group does not
18 just deal with this, it deals with an awful lot of other
19 things and there are an awful lot of other issues going
20 on. It may seem there is a huge time lapse there, but
21 we were actually doing other things at the time.
22 Naively, we did not know the complexity of it, so we did
23 not delve into it further until then.
24 Q. If one puts the boot on the other foot and looks at it
25 from the Trust perspective, one of your criticisms is,
0024
1 is it, that here the Trust knew that there was
2 a potential problem over the retention of hearts, and
3 when you wanted to have a definitive list, a set of
4 information about the extent of retention and whose
5 hearts had been retained, whose had not, it took some
6 time after February for the information to be fully
7 clarified?
8 A. I find that now very, very hard to believe, that in
9 November letters could be written saying that they knew
10 obviously how many they had got, but it was not until
11 February that they actually started collating the
12 information. But also bearing in mind they have known
13 since 1996 about Helen's, you would have assumed that
14 most people -- probably not. I would have say, rather
15 than put out accusations, you would have looked yourself
16 to see how many other organs had been retained.
17 Q. Does what you say about the fact that there were
18 inevitably other priorities for you and for the Heart
19 Action Group also apply perhaps to the Trust?
20 A. Obviously, yes. It has to be the hospital.
21 Q. You describe in any event how, in the meeting in
22 February, you were shocked by the revelation. Let us
23 take a look at what happened in February. It is
24 307/165, a file note. We are looking at the UBHT's file
25 note. This may not be your recollection so we will just
0025
1 go through it.
2 "Meeting arranged to discuss how best to return
3 retained hearts and other material to parents who wished
4 such return."
5 Then it sets out an agreed way forward. The
6 agreed way forward was for contact to be made with
7 parents to explain that hearts and other body tissue
8 were sometimes retained.
9 There is a reference there to "other body
10 tissue". Was that mentioned?
11 A. This was actually mentioned at this meeting. It was
12 tissue, just small samples of tissue. There was no
13 other mention at this point about other organs; it was
14 only just tissue samples that were taken routinely at
15 every operation. There was no mention of any other
16 organs, it was just tissue samples.
17 Q. I think you mean "postmortem", not "operation"?
18 A. Yes, I am sorry.
19 Q. Do not worry. Ian Barrington was to be informed if the
20 process got underway to field telephone calls. There
21 were information processes, and then letters which
22 confirmed one way or the other as to the retention of
23 hearts.
24 We see at item 7:
25 "BHCAG willing to offer positive remarks about
0026
1 current services to media if we wish [obviously the
2 Trust] at any stage."
3 Was that the note on which the meeting finished?
4 A. It probably was. My recollection of the meeting was, as
5 it says there, that I remember Helen and myself just
6 looking at each other when we came to the figure of 179,
7 because this was the way forward we had been discussing
8 for the last couple of months, but obviously we did not
9 realise the scale, and until we actually got out of the
10 meeting, we were actually just going through the motions
11 of what we discussed previously. It was not until Helen
12 and I got outside and realised it was such a huge amount
13 of hearts that had been retained, we thought, you know,
14 we cannot actually do this.
15 Q. So what happens is that during the meeting the shock,
16 the horror of the revelation is not such as to make you
17 lose confidence in the people you are talking to; quite
18 the reverse: you still have a common way forward?
19 A. Yes, I mean, we have always got on very well with
20 Mr Barrington and Mr Ross. It was no particular --
21 I mean, they are bound by constraints of employment,
22 I do understand that, whether it is right or whether it
23 is wrong I will not comment, but we understand that it
24 is their job.
25 Q. You are saying it was afterwards that you began to think
0027
1 about your own position?
2 A. Well, we actually got outside the door, to be perfectly
3 honest, we rang the other members of the executive and
4 we also rang Mervyn Fudge and told him, obviously, how
5 many hearts had been retained and said, well, what do we
6 do now because this is information that we cannot keep
7 to ourselves because the group -- some of the reasons
8 behind it was the fact they had been denied information
9 in the past, I was not about to be the person who was
10 going to withhold information from them now.
11 Q. Can we look at 309/128? This is a press release which
12 I think was issued on 9th or 10th February of this year?
13 A. Yes.
14 Q. It sets out publicly that there had been hearts retained
15 without knowledge or consent. You say in the second
16 paragraph:
17 "The Trust had not made us aware until now that
18 the hearts had been retained systematically."
19 A. Yes.
20 Q. Why was it that that press release followed so quickly
21 upon the meeting of 4th February which appears to have
22 ended on a note of agreement as to a common way forward?
23 A. Because going into the meeting, we thought that, as
24 I said in the past, it was only a handful; it was not
25 such a large amount of hearts. Obviously we found that
0028
1 out during the meeting and it had to actually sink in
2 before we could actually decide what to do with it.
3 Q. You say in your statement words to the effect that you
4 felt that you would be withholding information from
5 those entitled to know if you did not say something?
6 A. Definitely, and I was accused of doing that by group
7 members as well because I did not tell them until the
8 Monday.
9 Q. Because up until now, you had been looking for a way
10 forward parallel to the Trust to let the information
11 come out gently to those who wanted to know; not for
12 those who did not?
13 A. I am sorry, could you repeat that, please?
14 Q. Up until then, you had been looking for an agreed way
15 forward with the Trust to manage the flow of information
16 so that it did not cause distress?
17 A. Yes, and also at this point, because I actually spoke
18 with Mr Ross over the weekend at home so we did not
19 completely exclude the Trust, we just said, "This is
20 what we are doing". We actually kept them fully
21 informed the whole way through, we did not just go ahead
22 and do it, so they were actually prepared with their own
23 answers when people came back to them.
24 Q. One of the questions that obviously is raised, and
25 Mr Ross has given evidence about it himself, was why it
0029
1 was that the Trust took so long to tell parents what the
2 true position was once it came to light that there was
3 a body of retained organs about which parents had not
4 been informed.
5 For your part, you did not tell members,
6 generally, of the Action Group that there was a body of
7 organs that were retained without consent for some time;
8 you knew that there were more than two --
9 A. No, I am sorry, that is wrong, no. We had meetings in
10 each area and it had been brought up at each discussion
11 in detail at these meetings, and we said basically we do
12 not know; we were not withholding anything from
13 anybody. We did not know anything so we were
14 withholding nothing from them. We said we would
15 actually go to the Trust and see if there was a way we
16 could actually find out for them.
17 Q. So having found out the full scale, that had to become
18 public as you saw it?
19 A. Yes.
20 Q. What were people complaining about when they complained
21 you had had information which was not passed on?
22 A. There was only a group, but bearing in mind this is
23 a really distressing thing for people to find out and
24 the fact that we had known for three days before we made
25 it public, I have to say that it was the Thursday
0030
1 evening that we came out of the meeting; we had further
2 discussions on the Friday of how we would do it, and
3 I actually asked Mr Ross on the Friday morning if he
4 could find out if my son's heart had been retained and
5 he told me on the Friday so I actually took two days
6 off. That was the only reason I took until Monday to
7 tell them.
8 Q. You talk about the distress in the press release that
9 parents had from the disclosure?
10 A. Yes.
11 Q. And what I want to try and do is to unpick, if I can,
12 what you can tell us from your own experience,
13 obviously, and from that of other parents as to the way
14 in which that shock and sorrow comes.
15 If one reads the press, it is the disclosure which
16 brings the shock and sorrow?
17 A. I think the main thing is the fact that these organs
18 were removed from our children without our consent.
19 That is the distressing factor. Obviously the finding
20 out is what causes it, but the fact that these were
21 removed without parental consent, because the majority
22 of them were Coroner's postmortems, so legally they did
23 not have to inform anybody, but morally, most people
24 thought it was absolutely diabolical.
25 Q. So it was the moral outrage that it was done at all?
0031
1 A. Yes.
2 Q. And that is general to all the parents, is it, or not?
3 A. I cannot say I have spoken to every single one
4 individually, but a lot of parents, yes. There is the
5 odd parent who, you know, they did not mind, but the
6 majority of parents wished there had been consent. Some
7 wished the Trust to retain them but others would not,
8 and some found it particularly distressing on religious
9 grounds, because they felt their child had not been
10 buried complete. It is the moral aspect which a lot of
11 people find very, very hard to get to grips with.
12 Q. Before I leave the press release and talk about more
13 general matters on which you can help us, is it the case
14 that the press release was perhaps accelerated by
15 knowledge that the press itself might have possession of
16 some information?
17 A. Yes.
18 Q. Again, to the best of your understanding, what did you
19 think was going to happen if --
20 A. I was aware that it would have been in the papers
21 anyway, whether we would have done it or whether we had
22 not, and I would much rather the parents of the group
23 had found out from us than it had been on the front
24 page of the paper. I know there is some dispute in the
25 Trust about this, but myself and Mr Fudge were both
0032
1 contacted on the phone. They knew the time of the
2 meeting that we were having at the Infirmary that day,
3 and they knew the content of the meeting as well. I had
4 not actually asked the gentleman whether or not he would
5 say this because he has not been here for a while, but
6 it would have gone to the papers anyway, so it was much
7 better -- that was our opinion, that it was better to
8 have come from us than to have seen it on the front
9 page of the newspaper.
10 Q. In looking back upon the process of seeking consent and
11 the process of giving parents information as to what
12 will happen in cases where consent is not required
13 because the Coroner can order a postmortem, what, on
14 reflection, would you like to see as the ideal system?
15 A. The same system that they use for donor and transplant.
16 You would not take an organ out of somebody's body to
17 put in somebody else's without asking the permission of
18 their family.
19 Q. How do you deal with the question of a Coroner's
20 postmortem where the Coroner may require a postmortem?
21 Do you have a view as to what should be said to parents
22 about what might happen in the course of a postmortem or
23 after it?
24 A. Obviously it is a tremendously emotional time, but you
25 do need to have the facts laid down very simply to you,
0033
1 but you have to be aware of what is actually happening
2 because it is your child. Although at this moment in
3 time in the eyes of the law a body does not belong to
4 anybody, I believe, to a parent it is still your child
5 and you have as much right to know what is going on, or
6 more right than the Coroner.
7 Q. So you are saying that whatever the law may say about
8 the right to the body, you have a right to information?
9 A. Yes.
10 Q. To what extent do you think it right that every parent
11 should be told that during the course of a postmortem it
12 may be necessary to take the heart from the body and it
13 may be necessary, we have heard evidence in this Inquiry
14 from Professor Green, to preserve the heart for 10 days
15 or so in formalin before the heart can be dissected and
16 the cause of death established by examining the heart.
17 To what extent should one go into that sort of
18 information with a parent following the tragedy of
19 a death?
20 A. If it is not going to be returned to the body, the
21 parent -- in my opinion -- has a right to know. If it
22 is being returned to the body, it is obviously more
23 complex, but if it is actually being retained by the
24 hospital, then I personally would want to know.
25 Q. Do you think there may be parents who would find the
0034
1 information distressing, adding to the grief that they
2 already have?
3 A. Yes, undoubtedly. You would not be normal, to be
4 perfectly honest, if it did not add to the grief you
5 were already going through, but that does not
6 automatically mean that you do not want to know.
7 Q. Suppose that there were a choice given by the clinician
8 talking to the parent after the death, saying there has
9 to be a postmortem in this case and explaining, one
10 would hope sympathetically, why that was, and that the
11 postmortem would involve the examination of the heart
12 out of the body.
13 To what extent do you think that clinician might
14 say, "I will tell you how the postmortem is done and
15 what it involves if you want to know" --
16 A. Then it is actually giving the choice back to the
17 relative themselves and at the end of the day, that is
18 what it is all about, the choice of the relatives.
19 Q. There is a balance, is there not, to be struck between
20 saying that which gives the choice to a parent at the
21 time when they may not --
22 A. They may not want to hear it, I understand what you are
23 saying.
24 Q. On the other hand, they may not be in a position to
25 exercise the choice and may feel cheated later if they
0035
1 did not get it. From your perspective, how does one
2 resolve those problems?
3 A. Very difficultly. At the moment it is going around in
4 my head and you are not going to get a good answer off
5 me.
6 Q. Feel free, as other witnesses do, to reflect on it and
7 come back to us, because the input that you from your
8 perspective and in particular as Chairman of the Heart
9 Children's Action Group can give us is uniquely
10 valuable?
11 A. Yes. When I am not sat in front of everybody else, I am
12 sure I will be able to think about it more clearly.
13 Q. And perhaps when you are warmer?
14 A. I am actually warm now, thank you.
15 Q. Can I just ask for some clarification of a couple of
16 parts of your statement? If you would turn, please, to
17 page 7 on the screen, you say that it was disturbing
18 that:
19 "...in one letter sent by the UBHT to a family
20 confirming that 'the retention of a heart was standard
21 practice following postmortem examinations undertaken at
22 Bristol Children's Hospital. We have now found that
23 this was not necessarily the standard practice of the
24 pathologist who had taken a postmortem at the Bristol
25 Royal Infirmary. In [a particular case] the postmortem
0036
1 examination was undertaken at the Bristol Royal
2 Infirmary and it is therefore probable that [the] heart
3 was returned to [the] body before it was released", but
4 you say that the records -- I think it must be "are
5 unable to confirm this definitely", is it?
6 A. Yes.
7 Q. The point you are making there is what? That there may
8 be a variation in practice as between pathologists?
9 A. Yes, and also, Professor Berry made that clear to us,
10 that there were 10 to 15 different people who
11 actually -- I am sorry, because I know -- would you mind
12 if we take a break, because I have gone completely --
13 THE CHAIRMAN: You read my mind, Mrs Willis -- not that
14 I had gone completely but that it was time for a break.
15 We normally have breaks at a quarter to and we are just
16 slightly over that time, so let us take a break for
17 15 minutes and reconvene at about 11.05, by which time
18 I hope the temperature will be under control.
19 (10.50 am)
20 (A short break)
21 (11.10 am)
22 MR LANGSTAFF: Michaela, in an answer that you gave to me
23 earlier, you may have suggested that what was worse was
24 the fact that organs were retained rather than the lack
25 of knowledge in the parent that they were retained. Is
0037
1 that what you meant?
2 A. No, it was not. Actually, I obviously made a pig's ear
3 of saying that. It was actually the fact that parents
4 had not consented -- it was the fact that consent was
5 not obtained rather than the fact that the organs were
6 removed.
7 Q. I have been asking you, I think, about the way in which
8 paragraph 14 was to be redrafted, as it were, and I was
9 asking you what point you were trying to convey in
10 paragraph 14?
11 A. It was just the fact that the hospital was actually
12 unclear about what it was doing in some of these cases
13 there was not obviously a strict rule of thumb that was
14 adhered to.
15 Q. You may be grateful to know that those are all the
16 questions which I am going to ask you, save one, and
17 that is whether there is anything which you would wish
18 to add, any particular message which you would like to
19 give to the Inquiry Panel now that you have your chance
20 to do so from where you sit?
21 A. It is only really to reinforce the fact, I obviously did
22 not express myself very well, the fact that it is the
23 consent that most parents feel is the most important
24 thing, that they are actually given the right to know
25 what is happening to their children's organs, as opposed
0038
1 to the actual removal of them.
2 Q. Again, that last answer, you said it was the consent,
3 you mean the information?
4 A. Yes, that they are actually given the information and
5 they are given the right to choose and if they do not
6 have the right, if the Coroner insists, at least they
7 know it is actually happening.
8 MR LANGSTAFF: That is all I am going to ask you. There may
9 be some questions from the Panel, and I suspect
10 a question or two from Mr Lissack.
11 THE CHAIRMAN: Mrs Willis, just picking up on that last
12 point you made, it is the notion of choice that you are
13 emphasising?
14 A. Yes. I also believe that this is also what Mr Berry and
15 the pathologists, looking at some of the records since
16 1982, Mr Berry has been trying to obtain consent forms,
17 that people actually have a choice in the matter.
18 THE CHAIRMAN: There are no more questions from the Panel.
19 Mr Lissack?
20 Re-examined by MR LISSACK:
21 Q. Thank you. Mrs Willis, I just wish to clarify with you,
22 if I could, please, the sequence of events in early
23 February of this year, because I think we might have got
24 in a bit of a muddle.
25 On 4th February, which was a Thursday, you and
0039
1 others on behalf of the BHCAG attended a meeting with
2 the Trust at which you learned that the number of hearts
3 retained was in the region of 179; correct?
4 A. Yes.
5 Q. On Friday, the 5th, I think you learned the personally
6 shocking news that your son's heart was amongst those
7 retained?
8 A. Yes.
9 Q. On Saturday, the 6th, and Sunday, the 7th, you were
10 understandably consumed with your own thoughts, but is
11 it right that on Monday, the 8th, you and others,
12 including Mr Fudge, one of the solicitors, went to
13 a further meeting with the Trust at which you and he and
14 they together worked on a database of identification for
15 which heart linked with which child and which member of
16 your group?
17 A. No, we went with the intention of doing that.
18 Q. The purpose being that you would write a letter which
19 would go out on behalf of the BHCAG that night, the
20 Monday night, the 8th, to every member so that they
21 should learn the news of the general position from you,
22 rather than reading about it in the papers; correct?
23 A. Yes.
24 Q. And is it right that, that night, letters did indeed go
25 out to as many of your members as you could send them
0040
1 to?
2 A. They did.
3 Q. Informing them of the general position?
4 A. Yes.
5 Q. On Monday the 8th and Tuesday the 9th, were you
6 contacted by the press who knew about the meeting that
7 had taken place on the 8th, the timing and the purpose
8 of it?
9 A. Yes, we were.
10 Q. So in those circumstances, was it your resolve to hold
11 a press conference but to delay it until Wednesday the
12 10th to permit the letters you had sent on the Monday
13 evening to arrive?
14 A. Yes.
15 Q. And was it to that end that the press release that we
16 looked at in your evidence earlier on was drafted and
17 issued?
18 A. Yes.
19 MR LISSACK: I just wanted to have the sequence right.
20 THE CHAIRMAN: Mr Lissack, I am grateful to you for that.
21 MR LISSACK: That is all that I ask, thank you very much.
22 THE CHAIRMAN: Mrs Willis, thank you very much for coming to
23 help us this morning. In fact, I repeat what I said
24 before, that we have your other statement, your personal
25 statement and that of your husband, and of course we
0041
1 have read that and we will take proper account of it.
2 One thing I would add, in addition to my thanks
3 and in addition to reminding you -- you have probably
4 heard it said by me on a number of occasions that if
5 there are other things that come to your mind, please
6 let us know -- is that in your capacity as the Chair of
7 the group, if you have any thoughts on the very
8 difficult issues that Mr Langstaff was rehearsing with
9 you for the future about, if one is to wrestle with this
10 idea of choice how does one go about it -- someone will
11 write down on your behalf that it is at about transcript
12 35/13 -- we would of course be very grateful to hear
13 from your group. It will help us in our deliberation.
14 So thank you for today.
15 (The witness withdrew)
16 MR LANGSTAFF: Sir, before I call Professor Berry to give
17 his evidence, you will remember that on Monday of this
18 week you acceded to an application, telegraphed through
19 me that Mr Lissack would otherwise have made himself, to
20 exercise the right, which is the right of all
21 participants in this Inquiry, to make a short statement
22 following the evidence of a witness, and in his case,
23 the witnesses on this particular block, hence after
24 Mrs Willis, so that the significance of their evidence
25 and whatever comment he may wish to make may be made to
0042
1 the Panel.
2 I emphasise that this is a right which is
3 available by application if it is not to be given in
4 writing, but you have acceded to the application that
5 this should be done orally, and it is of course
6 something which is open to any representative of any
7 participant to do.
8 THE CHAIRMAN: Yes. Mr Lissack?
9 STATEMENT BY MR LISSACK:
10 MR LISSACK: Thank you very much indeed. The few words
11 I have to say are designed to recap on the five
12 witnesses you have heard this week from amongst the
13 BHCAG.
14 What I have to say will, of course, be
15 supplemented later by written submissions in accordance
16 with your procedure, but these few words will take less
17 than five minutes and I suspect, I hope, will be useful
18 in putting the evidence in its proper context.
19 On 7th September the Inquiry heard evidence from
20 Professor Robert Anderson, Professor of Paediatric
21 Cardiac Morphology at Great Ormond Street in London.
22 In the last part of his evidence he was invited to
23 consider the issues of removal and retention of the
24 hearts of babies who died following cardiac surgery, and
25 also the related issue of consent.
0043
1 He was plainly a witness of the utmost integrity
2 and gravitas, and those qualities only served to
3 underline the enormity of what he told the Inquiry.
4 In essence, you will recall, he said this: over
5 the last 40 years or more, collections of hearts and
6 other organs removed from babies and young children have
7 been built up at Great Ormond Street and the Royal
8 Brompton Hospitals in London, at Alder Hey in Liverpool,
9 and in Leeds, Newcastle, Sheffield, Manchester,
10 Birmingham, Southampton and of course Bristol.
11 The total number of hearts presently retained in
12 England he put at about 11,000, as you will remember.
13 On the issue of consent, he was asked this by
14 Mr Langstaff:
15 "Do you know what, if any, reference was made to
16 the relatives of the dead person from whom the heart
17 came?
18 "Answer: I think that in many ways this is the
19 one thing that this entire Inquiry has brought to our
20 attention: the fact that we presumed much too much when
21 we made our collections."
22 The presumption he was alluding to, sir, was of
23 course, as you know, that of the medical profession as
24 to the right to merely take organs from the dead as and
25 when they thought it appropriate, for, as the Inquiry
0044
1 now knows, those thousands of hearts were taken without
2 the knowledge or consent of the parents of the child,
3 kept for decades in some cases, kept for days in other
4 cases, and then disposed of, but in each case, the
5 parents kept in ignorance.
6 This week the full import of that evidence has
7 been brought home to this Inquiry by the evidence of
8 Helen Rickard, Brenda Rex, Sharon Tarantino, Paul
9 Bradley and, today, Michaela Willis: five parents who,
10 each in their own way, in their own words, have shown
11 the medical profession what has been the consequence for
12 each of them of it having, in Professor Anderson's
13 words, "presumed much too much".
14 The evidence you have heard has been at times
15 almost overwhelming. To listen to the testimony of
16 parents who had perhaps begun to come to terms with the
17 loss of their child, only to learn, years on, that
18 unbeknown to them, the baby's body they had buried was
19 bereft of its organs, has been almost too hard to bear.
20 The impact that evidence has had upon all was
21 tangible and visible.
22 We now know that the hearts of Samantha Rickard,
23 Steven Rex, Corinna Tarantino and Bethan Bradley and
24 Daniel Willis were kept. In addition, the lungs and
25 a piece of liver was retained from the bodies of both
0045
1 Corinna Tarantino and Bethan Bradley, and in Bethan's
2 case, her brain was kept too.
3 You know, because Mr Langstaff was good enough to
4 tell you this morning, that those of us acting for the
5 BHCAG have worked particularly closely with the lawyers
6 to the Inquiry on this subject. You will also know,
7 because he was good enough again to tell you, that this
8 week we have, in close co-operation with the Inquiry,
9 finished a full and complete analysis of over 100 cases
10 where the hearts and other major organs were removed and
11 retained or disposed of without knowledge, let alone
12 consent.
13 I wish to give credit where credit is properly due
14 for this work. It has been a huge and difficult task
15 and the analysis has been largely done by a young
16 researcher, Joachim Stanley, assisted by Gabriel Rogers.
17 I know the Inquiry are indebted to us for the work; you
18 were good enough to say so. I would like them to have
19 the credit publicly.
20 Thus the five who have given evidence before you
21 this week on this issue are but representatives of a far
22 wider constituency. May I, please, make the following
23 plain: none of the five parents who have given evidence
24 this week suggest for a moment that this was a practice
25 that was done to cause distress; equally, no one
0046
1 suggests that this was just done for the sake of it.
2 Furthermore, many of the 600 individuals who comprise
3 the membership of the BHCAG would have consented to
4 retention of the individual organs if only they had been
5 asked. Each of the five who gave evidence before you at
6 least recognises the "greater good" argument, even if he
7 or she would not have been willing, if asked, to give
8 their child's heart for the cause.
9 Shocking as it is, the issue here is not really
10 about retention itself; it is about consent, rights and
11 information. These five witnesses bear testimony, sir,
12 to the fact that the real shock lies not so much in the
13 fact of retention, although I do not overlook the words
14 of Brenda Rex, describing the practice as "disturbing
15 and sinister", and recognise that for some, they may
16 find an echo in their own thoughts. The real shock is
17 in the discovery of the retention. It is bewildering to
18 these families, and no doubt others, that it took until
19 1999 for even the most enlightened and senior members of
20 the medical profession, led by the likes of Professor
21 Anderson, to realise that the profession had done
22 wrong. You will remember how he put it in evidence:
23 "I think it was an act of omission by us not
24 realising that appropriate permission had not been
25 granted. Certainly when the whole thing broke, I was
0047
1 surprised that we had not thought of this earlier; we
2 should have done."
3 It is to be hoped that in the rest of the evidence
4 you hear today, Professor Berry will be as candid about
5 the events in Bristol as Professor Anderson has been
6 about the events beyond.
7 Thank you very much.
8 THE CHAIRMAN: Thank you, Mr Lissack.
9 MR LANGSTAFF: Sir, Professor Berry. Professor Berry, would
10 you take the oath, please?
11 PROFESSOR PETER JEREMY BERRY (Sworn)
12 Examined by MR LANGSTAFF:
13 Q. Professor Berry, your full name is Peter Jeremy Berry,
14 is it?
15 A. Yes.
16 Q. When we see letters or documents which refer to "Jem",
17 that is you, is it?
18 A. That is myself, yes.
19 Q. You made a statement to us which begins at WIT 204/1.
20 Is that the start of the statement?
21 A. Yes, it is.
22 Q. And if we go through to page 25, is that your signature?
23 A. That is my signature, quite legible.
24 Q. Are the contents of that statement true and accurate?
25 A. Yes, they are.
0048
1 Q. And you have given us, together with that statement,
2 three appendices, appendix 1, which begins at page 26;
3 appendix 2, or Annex 2, which begins at page 33; and
4 Annex 3 which demonstrates a number of consent forms in
5 use from time to time, or proposed, at page 37.
6 You have made comments, have you, upon the
7 parents' statements which we find at page 50 and 51?
8 A. I have.
9 Q. There are comments which you have made in respect of
10 individual children?
11 A. Yes.
12 Q. I shall not, for obvious reasons to which I referred
13 earlier today about the confidentiality of individual
14 parents, make reference to those.
15 You were the paediatric pathologist, were you, at
16 Bristol from what, 1983, November 1983?
17 A. November 1983, yes, that is correct.
18 Q. Until the present day?
19 A. Yes.
20 Q. Although the paediatric cardiac pathology has, I think
21 since 1993, been done by Dr Ashworth whom we saw
22 yesterday?
23 A. Predominantly by Dr Ashworth, yes.
24 Q. Can I, at the start of the questions which I have to ask
25 you, see if we can establish together a number of facts.
0049
1 Taking the period as a whole that we are concerned
2 with, 1984 to 1995, is it a fact that you have
3 calculated that in 83 per cent of the autopsies
4 performed, tissue was retained thereafter?
5 A. The figure of 83 per cent refers to retained hearts,
6 I believe. It would have been our routine, as it is in
7 most teaching hospitals throughout the UK, to retain
8 tissue samples of most organs for the purpose of
9 microscopic examination.
10 Q. I am grateful for the further clarification. Taking
11 again an overall perspective, 80 per cent of the
12 postmortems were Coroner's postmortems, and it follows
13 some 20 per cent were what may be called "hospital
14 postmortems"?
15 A. That is correct.
16 Q. In the 265 cases that relate to heart deaths, if I can
17 call them that, and our period, there was one case in
18 which you have identified what you describe as an
19 "obvious surgical error"?
20 A. That is correct.
21 Q. Therefore it follows there were 264 in which you have
22 not.
23 A. That is not quite correct. What I said is, I think in
24 my own practice, there was one case. Over that period
25 a number of pathologists were involved.
0050
1 Q. Looking at the series of 265 which, it follows from your
2 last answer, were not all yours, is it right that in no
3 case were the reasons for the retention of the heart
4 recorded in writing as part of your notes or the notes?
5 A. I think some of the postmortem reports record "heart
6 retained for further examination", "heart retained for
7 examination after fixation", those kinds of remarks. It
8 is the minority of the reports, but it is in some of
9 them, as I think I have put in my statement.
10 Q. In those cases where reference is made to hearts
11 retained for further examination, the implication would
12 be further examination to establish what?
13 A. For the purpose of diagnosis.
14 Q. And in any case in which the heart has been retained
15 beyond that, the time must long since have passed when
16 the diagnosis would have been established?
17 A. That is correct.
18 Q. So in those cases, there has been no written reason
19 recorded for any further retention beyond the period of
20 time needed to establish the diagnosis?
21 A. No, that is correct.
22 Q. So far as Coroner's postmortems are concerned, rule 9 of
23 the Coroner's rules requires the retention of material
24 bearing upon the cause of death for such period of time
25 as the Coroner shall see fit?
0051
1 A. Yes.
2 Q. Am I right in thinking that in any one of the 265 cases,
3 the Coroner never saw fit, expressly.
4 A. I am sorry, saw fit?
5 Q. Never expressly saw fit?
6 A. I now follow your question. No, there was no specific
7 instruction from the Coroner what we should do with
8 tissue once his interest in it had expired.
9 Q. So in each of the Coroner's cases in which tissue was
10 retained, the view of the pathologist or the department
11 retaining the tissue was either that the Coroner must be
12 taken to see fit, or that there was some other purpose
13 for which retention was permitted?
14 A. That is correct.
15 Q. Am I also right in thinking that in some 24 per cent,
16 roughly just under a quarter of cases that came through
17 the pathology labs, these were cardiac cases -- I will
18 rephrase the question.
19 Of all your workload, roughly a quarter were
20 cardiac cases?
21 A. It is much less than that, because a large part of our
22 work involves living children and biopsy work, for
23 example, children with cancer, tiny babies who come in
24 for surgery in the first weeks of life, other
25 conditions, children who come in for simple procedures
0052
1 such as appendectomy, so a large part of our work
2 involves living children.
3 We then have autopsy work, postmortem work, of
4 which I accept your figure because you have had our
5 books. You say 24 per cent over the period involved
6 cardiac surgical cases, so it is a part of "a part of"
7 our work, but nonetheless, a very important part.
8 Q. So a quarter of postmortems. The postmortems are
9 roughly what percentage of the work?
10 A. It is hard to say. I would think in those days it was
11 probably less than half of my time was spent doing
12 postmortem work.
13 Q. Less than half could be anything from 0 per cent to
14 50 per cent?
15 A. It is very difficult to cast my mind back that far, but
16 if one were to say -- I would have thought it was closer
17 to 25 per cent of my time, 25 to 30 per cent, in those
18 days.
19 Q. So when the Panel seek to draw any conclusions as to
20 what one might have detected, for instance, from looking
21 at a series of paediatric hearts retained, or examined,
22 it is looking at something which is a quarter of
23 a quarter, roughly, of the work passing through the
24 department?
25 A. Yes.
0053
1 Q. 1/16th, roughly?
2 A. Perhaps. I do not want to underplay it because it was
3 obviously very important to us, but nonetheless, it was
4 a part of "a part of" our work.
5 Q. Of that "part of a part", how many pathologists would be
6 involved in doing those postmortems? I am sorry for the
7 inelegant language.
8 A. Over the years I have not made an exact calculation, but
9 I think it is somewhere between 15 and 20 pathologists
10 would have been involved, probably closer to the 20, but
11 I do not want to shirk my responsibilities that in many
12 of those cases, I would have been ultimately responsible
13 for the examinations.
14 Q. So, again, give us a ball-park estimate, if you would,
15 as to the number of cases in which you would have been
16 responsible for the examination, either by doing it or
17 by supervising it?
18 A. Again, you asked for a ball-park figure, so that is the
19 best I can do: perhaps 70/75 per cent.
20 Q. So in terms of the overall workload of the department,
21 some 12 per cent of the overall workload consists of
22 cardiac paediatric cases for which you had
23 responsibility, roughly?
24 A. If you put it like that, yes.
25 Q. So far as the retention of tissue is concerned, to what
0054
1 extent, in your view, did the practice in Bristol of
2 keeping tissue in what you told us was some 83 -- we
3 have established it is some 83 per cent of paediatric
4 cardiac cases: to what extent did that differ from
5 practices elsewhere in the country?
6 A. I say in my statement that I trained both in Cambridge
7 and in the United States, and I had attended -- and in
8 the early years in Bristol -- attended courses and
9 meetings in the United Kingdom and my view was that this
10 represented best practice as seen by doctors at the
11 time, and that what I was doing and my colleagues were
12 doing was entirely usual.
13 Q. You have since sat on a number of working parties to
14 establish and look at guidelines for postmortems and
15 retention?
16 A. Yes.
17 Q. To what extent has the information given to you on those
18 working parties in any way changed your perception as to
19 what the position was nationally between 1984 and 1995?
20 A. Just to correct the record, I in fact chaired the
21 Working Party on retention of tissues and organs. It
22 has not changed my mind at all. I am confident that
23 that was the practice.
24 Q. What was the practice in the States?
25 A. I have no reason to believe that it differs
0055
1 significantly from ours. I cannot speak about the
2 consent issue because I was not involved with that.
3 Q. From your time in the States, can you tell us: were
4 children's hearts retained there?
5 A. Yes.
6 Q. For what purposes were they retained there?
7 A. For the purposes of diagnosis and further study, and in
8 the United States I think it is fair to say at that time
9 possible litigation was a rather larger cloud hanging
10 over the medical profession than it was in the country
11 at the time.
12 Q. So for those three purposes?
13 A. Yes.
14 Q. And what was your understanding as to what, if any,
15 knowledge had been imparted to the parent that this was
16 going to happen, or might well happen?
17 A. I have no knowledge. I have to say at that time I was
18 not sensitive to this issue and I do not know what
19 knowledge is or was imparted to parents in the United
20 States.
21 Q. You make a point that in each and every postmortem for
22 which you were responsible, you satisfied yourself that
23 there was consent, either because it was a Coroner's
24 postmortem or because it was a hospital postmortem and
25 you could see it?
0056
1 A. Yes. It is an absolute reflection for pathologists
2 first of all to check the identity of a patient, and
3 secondly, to check that there is consent provided.
4 Q. What was the position in the States?
5 A. I think the majority of postmortems that I witnessed
6 were consent or hospital postmortem examinations.
7 Q. So you saw forms of consent in the States?
8 A. I believe I must have done. It is now a very long time
9 ago, but I am quite certain they were all properly done.
10 Q. As part of your chairmanship of the Working Party, have
11 you made any enquiries as to what happens in other
12 countries?
13 A. I have an awareness of what happens in other countries.
14 It was not part of the Working Party's remit to look at
15 other countries. I discovered that this issue had been
16 raised in New Zealand, which has changed its approach
17 very much, but most other countries share what was
18 common practice in the United Kingdom.
19 Q. When did the matter come to the fore in New Zealand?
20 A. I cannot answer that, except by a personal conversation,
21 as it were, and it was the order of three years ago.
22 That is not an absolute date; I would like to go and
23 check that.
24 Q. When you have had a chance to check it, perhaps you can
25 tell us. What was the nature of the change of practice?
0057
1 A. I think there was an issue of retained organs and they
2 have tightened up their procedures and giving
3 information to parents and seeking consent as
4 appropriate, rather in the way that we are doing, and
5 have done in the United Kingdom.
6 Q. At page 6 in your statement, paragraph 19, you deal with
7 your practice so far as Coroner's inquests were
8 concerned?
9 A. Yes.
10 Q. And you say, five lines down, that further examination
11 of the heart could take place after a period of fixation
12 in formalin. Is the information given to us already
13 that that takes about 10 days correct or not?
14 A. We used a particular technique to perfuse the heart with
15 formalin so it could be examined the following day.
16 Q. So how long?
17 A. One could, with special techniques -- this is obviously
18 things we are looking at now -- reduce the period of
19 fixation, possibly so one could examine the heart the
20 same evening as the autopsy, but that was not my
21 practice at that time and was not a practice that is
22 used in the United Kingdom, so far as I know.
23 Q. So would it inevitably be a consequence of examining
24 a heart death that the heart would have to be removed
25 from the corpse?
0058
1 A. The heart is always removed during the course of the
2 postmortem examination. It depends what level of
3 examination is required. It would be very easy just to
4 look at the heart and say congenital heart disease is
5 present, surgery has been performed, and to return it to
6 the body. But if one wishes to try and approach what
7 really happened and provide useful information, then
8 I believe the heart has to be retained for a period for
9 proper examination in a quiet place with good light,
10 proper instruments and so on, separate from the actual
11 mortuary itself.
12 Q. How long, roughly, would that process take? Let us look
13 back, shall we, to 1984. Roughly how long would it have
14 taken then?
15 A. It would depend what other duties one had to perform.
16 Pathologists have urgent matters, just as clinicians do,
17 such as frozen sections and urgent biopsies on children
18 to look at, so depending on what else I had to do at the
19 time, the actual process of dissection of the heart
20 might take anywhere from 20 minutes if it was not too
21 difficult to many hours.
22 Q. When in relation to the main postmortem? The postmortem
23 examination, in the way that you use the description, is
24 the opening of the body and the examination of the whole
25 body?
0059
1 A. Yes.
2 Q. Following death?
3 A. Yes.
4 Q. It seems, in what you say and in what some of the
5 literature says, that a distinction is made between that
6 examination and the subsequent examination of an organ
7 removed from the body at what is called postmortem?
8 A. Yes. Although it is all part of the same process, we
9 tend to separate in our minds what actually takes place
10 in the mortuary from the subsequent examinations which
11 may be with the naked eye, with magnification, or
12 examination of microscope slides, but they are all part
13 of the same process and diagnosis.
14 Q. Part of the process, let us call them postmortem and
15 subsequent examination, roughly how long after the
16 postmortem in 1984 would the subsequent examination be?
17 A. I think it is difficult to say, it would depend upon the
18 case. For the purposes of examining the heart, it could
19 be done the following day, but I think it is fair to say
20 our practice, having retained the heart, is that we
21 could do it at a time of our convenience, when we could
22 incorporate the findings into a timely report to the
23 Coroner. So within a few days; a day or two.
24 Q. So we are looking at within a week?
25 A. Oh, yes.
0060
1 Q. It would follow, would it, that if, as it were, there
2 had been the inclination to do so, the heart thus
3 examined could have been returned to the body prior to
4 burial?
5 A. Yes, it could have been if the burial had been delayed.
6 I have to say all our efforts at that time were directed
7 to providing quick and general causes of death so that
8 parents could go on and make their funeral arrangements
9 and bury their child as soon as possible so we did not
10 delay funeral arrangements.
11 I think now our view would change and we would
12 perhaps enter into a dialogue with parents to see what
13 their wishes were and if they were prepared to delay the
14 funeral, perhaps by a day or so, we would accelerate the
15 examination of the heart so it could be returned to the
16 body.
17 I should also say that in the early 1980s, the
18 part covered by the Inquiry, I did not have a technician
19 to assist me in the mortuary, so for myself and many
20 others there were practical difficulties in returning to
21 the mortuary at a later date to re-open incisions,
22 return organs and then re-suture them afterwards. So
23 there were practical difficulties. Now we would
24 overcome those.
25 THE CHAIRMAN: May I ask a question? It may be that
0061
1 Mr Langstaff was going to ask it in any event, but
2 following the line of questioning that has just been
3 developed, I had understood -- perhaps I am in error --
4 that there were some technical reasons why it was deemed
5 appropriate to wait a while before dissecting the heart,
6 namely that the heart would be oedematous, and it was
7 suggested a number of days. Have I got it wrong?
8 A. I would prefer to wait a number of days, but I think we
9 have to compromise to recognise the needs of parents and
10 recognise the needs of pathologists and meet somewhere
11 in the middle.
12 Q. Forgive me, that is my fault. I was talking about 1984?
13 A. I think in 1984 we would have taken the view that
14 perhaps several days fixation would be ideal.
15 MR LANGSTAFF: So several days of fixation is what you might
16 expect in 1984?
17 A. Perhaps a couple of days, and then, having finished the
18 Coroner's report, maybe even return to the heart later.
19 Q. How did the process change, if at all, during the 1980s
20 and into the early 1990s?
21 A. I think certainly by the early 1990s I was becoming
22 increasingly uncomfortable with the grey area in the
23 law, which was my first concern. If you have a grey
24 area, we do our best to stay right on one side of it,
25 and I was becoming concerned with that. But also
0062
1 I think, increasingly one was aware through other
2 aspects of our work, perhaps with still born babies or
3 foetuses, these are tiny babies that die for one reason
4 or another before birth, the great sensitivity of issues
5 of human tissue.
6 So I was exploring avenues of fulfilling the needs
7 of pathologists and the Coroner whilst respecting the
8 views of parents. One of the solutions which I now
9 think is an inadequate solution, one of the solutions
10 that I thought of was in fact to return part of the
11 heart to the body and retain that part which was needed
12 for our studies.
13 Q. When was that change instituted, roughly?
14 A. I would say the early 1990s.
15 Q. So was there any significant change in process, as you
16 have described it, between 1984 and the early 1990s?
17 A. I think not, except you alluded yesterday I think to
18 letters and discussions I had had with cardiac surgeons
19 and others.
20 Q. We will come to those in due course. It is the process
21 I am focusing on at the moment, rather than thoughts
22 about the process?
23 A. The process has not changed.
24 Q. During the 1990s, has the process changed?
25 A. I think, certainly speaking for myself, I have become
0063
1 more and more cautious about retention of whole organs
2 and endeavour whenever possible not to do so. In 1996
3 we changed our consent form so that it specified
4 retention of the brain or heart in consent cases, so
5 that parents could consent or not consent to this as
6 they pleased.
7 Q. You have seen, have you, what Professor Anderson said in
8 respect of retention of tissue?
9 A. Yes, I have.
10 Q. Do you accept or reject that which he said, taking it
11 broadly?
12 A. Taking it broadly, I accept what he says, yes.
13 Q. Is there any significant point of difference between
14 what you would wish to say and what he has said?
15 A. I would want to go through his statement word by word,
16 but in general my view is that, looking back from 1999,
17 I regret that we did not become aware of this issue and
18 act on it sooner.
19 Q. At page 9 of your statement paragraph 29, you tell us
20 that:
21 "In practice the Coroner gave no specific
22 instructions. It was presumed in practice that
23 custodial responsibility for retained tissues remained
24 with the pathologist once the Coroner had accepted his
25 report, and a reasonable time for any queries from
0064
1 interested parties had passed."
2 You are speaking I think here generally of
3 practice of pathologists across the country, are you?
4 A. I think that would be a reasonable statement of
5 practice, yes.
6 Q. What was the basis for making any such presumption?
7 A. I think that Coroners no longer had an interest in the
8 tissue and the pathologist had it in their possession,
9 and so took, as it were, responsibility for it.
10 Q. Another way of putting the question of taking
11 responsibility for it would be: made such use of it as
12 they saw fit?
13 A. That would be another way of putting it, yes, within
14 what is right and was considered to be right, proper and
15 ethical.
16 Q. If the Coroner had not required a postmortem and if
17 there had been no consent or absence of objection to
18 a hospital postmortem, then the obligation of the
19 hospital in which a child died would be to ensure that
20 the body was disposed of in a suitable and appropriate
21 manner, would it not?
22 A. If there was no objection to postmortem examination? Is
23 that what I am understanding -- if there is no
24 postmortem examination?
25 Q. If there is no consent.
0065
1 A. I thought you said lack of objections, I am sorry.
2 Q. It is my inelegant phrasing, you are quite right?
3 A. If there was no consent to postmortem, then the
4 pathologist would have no interaction with that child
5 and the hospital would return it to relatives when they
6 claimed it.
7 Q. So the only reason why the Coroner has it would be,
8 would it, in order to establish the cause of death for
9 his own purposes?
10 A. That is correct.
11 Q. Under the Coroner's Act. That was generally
12 appreciated, was it, by pathologists?
13 A. I am not sure how clearly that was appreciated in the
14 early 1980s.
15 Q. For those who appreciated it at all, the corollary might
16 be thought to be that once the Coroner had finished with
17 his purposes, the initial obligation of the hospital to
18 ensure that the body was appropriately disposed of --
19 parts of the body were appropriately disposed of --
20 remained?
21 A. I think you have alighted on a difficult area, because
22 whilst carrying out a postmortem examination for
23 HM Coroner, the pathologist is an independent
24 practitioner not acting for the hospital or Trust.
25 The grey area arises because of course most of us
0066
1 work out of hospitals and so the tissues usually, but
2 not always, come on to NHS premises, if I can say that.
3 So to what extent a Trust becomes responsible for
4 tissues which may have been removed from one of their
5 patients who may or may not be lying in the same
6 hospital at that time is a difficult one, I think.
7 I could give you an example -- not a common
8 example -- but, for example, a patient might be removed
9 to the public mortuary, which no longer exists in
10 Bristol. One might carry out an examination and bring
11 tissue back into the hospital system.
12 Q. And having done so, as the agent of the Coroner?
13 A. Yes.
14 Q. Did pathologists see themselves as agents of the
15 Coroner?
16 A. Very much so. I think it is an important principle of
17 carrying out postmortem examinations for the Coroner
18 that one is independent of the Trust as it now is, or
19 the District Health Authority as it then was.
20 Q. Can you help me why it should be, if pathologists saw
21 themselves as agents of the Coroner and it was common
22 knowledge that the Coroner had no interest in the
23 retention of the body beyond establishing cause of
24 death, why it should be that pathologists presumed to
25 deal with the tissue as though it was their own to deal
0067
1 with, once that function finished?
2 A. I think there are two issues here. There is a legal
3 one, which I shall keep well away from.
4 Q. It is the views of pathologists that I am exploring?
5 A. Our views are based on common practice, the law and
6 ethics, so much as we considered them in those days.
7 I think our view was that tissue which was lawfully
8 obtained and was no longer required for its original
9 purpose could ethically be used for the greater good, if
10 you like.
11 Q. At page 34 you exhibit to us in Annex 1 "Code of
12 Practice for Retention of Postmortem Tissue". You tell
13 us that this predated 1991 when Dr Helen Porter joined
14 you?
15 A. That is correct.
16 Q. If we just look at it, "Hospital Cases", that speaks for
17 itself. Did you draft this?
18 A. I am certain I drafted it, yes.
19 Q. "In no circumstances should tissue" -- "tissue" includes
20 "organ", I take it?
21 A. Yes, it does, as it does in the Human Tissue Act.
22 Q. "In no circumstances should tissue be retained contrary
23 to parental wishes".
24 A. Yes.
25 Q. So that is quite clear?
0068
1 A. Yes.
2 Q. "Coroner's cases: tissue can normally only be retained:
3 "(a) for the express purpose of establishing the
4 cause of death ...
5 "(b) when civil or criminal litigation is in
6 prospect ..."
7 That excludes the retention of tissue for any
8 other purpose?
9 A. It excludes the initial retention for any other purpose,
10 yes.
11 Q. If one were following your Code of Practice to the
12 letter, tissue could not be, normally, to use your word,
13 retained after a Coroner's postmortem, could it?
14 A. That was not the understanding of this Code of
15 Practice. It referred to the initial retention, not to
16 long-term retention.
17 Q. Where do I find the word "initial"?
18 A. It is not there, but that was our understanding at the
19 time.
20 Q. If an outsider were reading this, it would appear that
21 the retention of tissue normally for the purposes of (a)
22 or (b) would exclude retention of however long for any
23 other purpose?
24 A. It might appear that to an outsider, but our
25 understanding and the understanding of pathologists in
0069
1 general is that if tissue was legally retained for the
2 purpose of diagnosis under rule 9, when it was no longer
3 required for that purpose it was ethical, legal, for us
4 to retain it for other reasons.
5 Q. What is the purpose of setting out a Code of Practice in
6 writing for the guidance of yourself and others if in
7 fact the practice which is relied upon is not that which
8 is written but is something which everyone knows because
9 that is what is done?
10 A. I think that is an unfair interpretation of this Code of
11 Practice. The purpose of that was that I had
12 a department where trainees, trained doctors, doctors
13 who have generally passed the primary examination of the
14 Royal College of Pathologists, would come through and
15 undertake autopsies under my supervision. I wanted to
16 make it absolutely clear to them, whatever practices
17 they had met elsewhere, in my department we only
18 retained tissues for those purposes. So, if they
19 thought they would like to examine a tissue for some
20 other purpose, they could not do so.
21 Q. Can we move to the next page, 35, which is May 1996:
22 "In Coroner's cases whole organs will ...", there
23 is no distinction between tissue and whole organs, we
24 have established that, for these purposes?
25 A. I think there is a distinction in the minds of parents
0070
1 which is an important one we need to acknowledge.
2 Q. I accept that.
3 "In Coroner's cases whole organs will only be
4 retained:
5 "(a) if essential for completing the report to the
6 Coroner."
7 A. Yes.
8 Q. "(b) if the clinician wishes an organ to be retained and
9 has discussed the retention of the organ with the
10 child's parents and recorded their consent in the case
11 notes."
12 A. Yes.
13 Q. Is this an addendum to the early Code of Practice?
14 A. I think it should be interpreted as that, yes.
15 Q. So here the retention is not just initial retention: it
16 is retention for any period of time?
17 A. That is my interpretation of it, yes. That is how we
18 intended it to be used.
19 Q. Whereas the Code of Practice which it is an addendum to
20 uses "retention" in the sense of "initially retained"?
21 A. Rightly or wrongly, we do not distinguish between
22 initial retention and long-term retention. I think the
23 important issue that you have highlighted about the
24 "cusp", if you like, between the Coroner's use and our
25 own use, retention for other purposes for the medical
0071
1 record, for audit, clinico-pathological review, is one
2 that we did not see as clearly as perhaps you do as
3 a lawyer.
4 Q. Just while we are looking at Annex 1, if we can bring it
5 up to date to 23rd November 1998, which I take it is the
6 last of the codes, if we look at page 36:
7 "Postmortem examinations for HM Coroner".
8 Let us get that on the screen. Here the
9 distinction is two-fold, is it: (1) for the purpose of
10 retention; and (2) in the documentation of the reasons
11 for retention?
12 A. I think this is part of a process that we have gone
13 through over the years of clarifying exactly what we
14 should be doing and trying to make sure, so far as is
15 possible, that parents get information about what we are
16 doing.
17 Q. And you deal specifically, at the foot of the code --
18 let us scroll down, thank you -- with the disposal?
19 A. Yes.
20 Q. Looking at the last four lines:
21 "Where there are no forensic or medicolegal
22 issues, whole organs will be disposed of by incineration
23 after one year unless we have been made aware that the
24 parents wish to make their own arrangements for
25 disposal..."
0072
1 A. Yes.
2 Q. That puts the onus on the parent?
3 A. Yes, it does, but we hoped that would be an issue that
4 would be discussed with them at the time the parents'
5 permission for retention of the organ is sought.
6 Q. So might it be more felicitously expressed by saying
7 "after such consultation with the parents as is
8 practicable", or words to that effect. That is
9 a lawyer's draft, but --
10 A. I am sure we could spend a lot of time redrafting this
11 and I know my own college is working very hard on issues
12 of consent and consent forms. I think we felt at this
13 time we wanted to go as far as to put our own house in
14 order while national guidelines were being drawn up.
15 So in a sense, we wanted to be ahead of what
16 everybody else was doing.
17 Q. Professor Knight wrote an article which we see at UBHT
18 308/44. It is the right-hand column, as you can see?
19 A. Yes.
20 Q. This article pre-dates, certainly, December 1985, and
21 I wonder if you can help us further with the date of it?
22 A. I am afraid I do not know the date of this article.
23 I would be surprised if it pre-dates 1985.
24 Q. The reason I can say that is if we go to UBHT 308/1,
25 this is 24th December 1985:
0073
1 "Dear Dr Berry", it is from the Medical Defence
2 Union to you. The second paragraph:
3 "The situation regarding postmortems on adult
4 patients is well set out by Professor Knight in the
5 article from the bulletin of the Royal College of
6 Pathologists."
7 A. I stand corrected. In fact I think this article was
8 published twice. It was republished later because
9 I think the College felt people needed to be reminded of
10 it.
11 Q. In April 1990 I think it was republished?
12 A. You have the date at your fingertips.
13 Q. Certainly it was obviously published before December
14 1985?
15 A. Yes.
16 Q. Someone informed like yourself had read it?
17 A. It would depend exactly when it was published. If it
18 was published before I became a member of the College,
19 then I would not have received the bulletin. Similarly,
20 if I had been out of the country --
21 Q. I am told the bulletin, it is a handwritten reference,
22 is September 1985. That is the best we can do, subject
23 to someone correcting us. Would you have read it?
24 A. It is obvious I had read it, because I have sent it to
25 the Medical Defence Union with my letter.
0074
1 Q. Either that or they are referring you to it, one or the
2 other?
3 A. Yes.
4 Q. Either you had read it and sent it to them or they were
5 drawing your attention to it?
6 A. Yes.
7 Q. Drawing it to your attention so far as the situation was
8 concerned and the requirements of the law: that is
9 plainly why you must have been consulting the Medical
10 Defence Union. I think you were asking for comments on
11 a form of consent?
12 A. That is right.
13 Q. So if we can turn over the page of the article to UBHT
14 308/45, and look at the first paragraph, the top
15 left-hand corner, it is six lines down:
16 "The retention of tissues for teaching and
17 research is not covered by the Coroner's permission, and
18 [in italics] the Coroner cannot grant such permission as
19 it is not within his remit to do so. He can forbid the
20 use of any tissues for such purposes, but positive
21 permission must be obtained under the terms of the Human
22 Tissue Act."
23 A. That is correct.
24 Q. So what Professor Knight appears to be saying is --
25 whether he is right or wrong is beside the point -- what
0075
1 he appears to be saying is that you cannot keep tissue
2 after a Coroner's examination, except for the purpose of
3 establishing the cause of death?
4 A. That is correct. But I think pathologists and
5 I think -- I will not try and speak for lawyers and
6 I look forward to the opinion that you receive, sir --
7 but I think it is a generally held view that if tissue
8 has been legally and properly retained during the course
9 of a Coroner's postmortem examination, then it may be
10 further retained for the legitimate processes such as
11 medical audit, clinico-pathological review, and so on.
12 As you have seen from my statement, I have modified my
13 views about how this should be done with information
14 given to relatives and consent sought where appropriate,
15 but at that time, and until really quite recently, the
16 view was that if it was legally and properly retained
17 during a Coroner's postmortem and the Coroner had
18 finished with it, then rather than destroying it, it
19 would perhaps be better to retain it and try and get
20 some good from it.
21 Q. You say that is the view. Here is Professor Knight, who
22 was himself a pathologist, saying the opposite?
23 A. I think -- no, I do not think so, because the word
24 "retention" to us at least, and I appreciate that
25 pathologists live in their own world, but to us
0076
1 retention is the matter of holding something back from
2 the body and allowing it to be closed and returned to
3 the relatives. That is what we mean by retention.
4 Q. If you are looking at the retention of tissues in the
5 context of teaching and research, that is obviously not
6 something that is going to be done over a period of
7 a few days while the body is returned for burial. That
8 is a long-term project, is it not?
9 A. That is correct, yes.
10 Q. And that must be what Professor Knight means by the word
11 "retention" here, must it not?
12 A. I do not think he does, no. I think when he goes on he
13 is alluding to the thought that I mentioned earlier,
14 that I am not sure that pathologists at that time were
15 fully aware that during the course of a Coroner's
16 postmortem you could only retain, initially or
17 long-term, tissues for the purposes of establishing the
18 diagnosis.
19 It may be in the early 1980s pathologists might
20 have been retaining tissue over and above what was
21 required for diagnosis, and I think that is what he is
22 warning us again against in 1985.
23 Q. I am just concentrating upon your last answer, that it
24 may be, you say, that in the 1980s pathologists might
25 have been retaining tissue over and above what was
0077
1 required for diagnosis, and that is what he is warning
2 against?
3 A. Yes.
4 Q. What is the difference between that and keeping tissues
5 after a Coroner's postmortem for the purposes of
6 teaching and research?
7 A. The difference, I think, is between -- let us say
8 a pathologist is doing an examination for somebody who
9 has died of pneumonia, and during the course of his
10 examination he comes across something interesting in the
11 liver which has no bearing on the cause of death. He
12 would like to retain it -- I am sorry for using these
13 terms but you have pressed me, sir -- for the purposes
14 of a museum or his own research or whatever. Professor
15 Knight's article, and the law bears out, it is wrong for
16 him to retain that tissue, for example, for a museum
17 because it had no bearing on the cause of death; but if
18 he has retained tissue, for example a microscope section
19 or a block of tissue from a coronary artery demonstrating
20 coronary artery thrombosis which is the cause of death,
21 then it was believed at that time that it was quite
22 legitimate that that section of a coronary artery could
23 be used for research purposes, because it had been
24 legitimately retained in the first place.
25 THE CHAIRMAN: Mr Langstaff, reading the last sentence of
0078
1 that first paragraph, it speaks to what Professor Berry
2 has just said. Do I take it that Professor Berry is
3 really saying that the word "retention" in the sixth
4 line could, in layman's language, be described as the
5 initial taking?
6 A. That is how I think pathologists understood it, sir.
7 Q. Whether it was intended to be read that way, we can only
8 find out if we ask Professor Knight.
9 MR LANGSTAFF: Yes. What I think, Professor Berry, you are
10 telling us is the understanding that pathologists in
11 general had, no doubt informed by your own reaction to
12 the article?
13 A. Yes.
14 MR LANGSTAFF: That is helpful.
15 THE CHAIRMAN: I am looking at the o'clock, Mr Langstaff.
16 We would normally break at now until 1 o'clock. Would
17 this be appropriate, or would you like to do something
18 else?
19 MR LANGSTAFF: No, certainly, I am very happy to break now
20 and give Professor Berry a break. I do not know whether
21 it is like the Baltic or Bali, where he is sitting.
22 THE WITNESS: It is getting like Bali.
23 THE CHAIRMAN: I am lost -- I see, Bali, the tropical
24 island.
25 MR LANGSTAFF: Hot or cold.
0079
1 THE CHAIRMAN: I was going through my lexicon of cereals!
2 We will come back at just before 1 o'clock.
3 (12.20 pm)
4 (Adjourned until 1.00 pm)
5 (1.00 pm)
6 MR LANGSTAFF: Thus far we have been looking at the
7 retention of organs following a Coroner's postmortem.
8 Can we now look, please, at a letter which you wrote on
9 16th February 1987, which we find at UBHT 322/129.
10 It is headed -- addressed to Miss Stoneham,
11 General Manager of the Obstetric and Paediatric Subunit,
12 headed "Consent for postmortem examination."
13 You are pressing a matter you raised two years
14 before, you say. We will come back to that.
15 The second paragraph. You say:
16 "The necropsy consent form in use at the Maternity
17 and Children's hospitals is not in line with those in
18 use elsewhere in Bristol and Weston, and does not
19 protect myself or the Health Authority if tissues are
20 taken for teaching and research."
21 The form is the consent form?
22 A. That is correct.
23 Q. Am I right in thinking that at that time hospital
24 postmortems occupied a larger percentage of the total
25 number of postmortems than they do today, by comparison
0080
1 with Coroners?
2 A. Are you asking about the UK in general or my own
3 practice?
4 Q. Your own practice?
5 A. That would not be true of my own practice. We have had
6 a huge increase in consent autopsies for various
7 reasons, the department has grown, and so on, that we
8 need not go into.
9 Q. In terms of cardiac cases?
10 A. In terms of cardiac cases I cannot speak because
11 Dr Michael Ashworth undertakes most of those cases now.
12 I think without going back and looking at the figures,
13 I could not speak to the trend you are asking me to
14 speak to, but nationally, in adult pathology, there has
15 certainly been a decline in consent postmortems and an
16 increase in Coroner's postmortem examinations.
17 Q. Is part of the reason funding?
18 A. No, I do not think so. I think there are many reasons.
19 Funding in what way? Funding for pathology
20 laboratories, or funding for --
21 Q. When you do a case through the Coroner, you get paid by
22 the Coroner, do you?
23 A. There is a fee for the person who carries out the
24 examination. My departments are practice is to put those
25 fees into a fund that supports the department and we
0081
1 have not taken those fees personally for some years now.
2 Q. In any event, returning to the text of this letter, you
3 say in the third paragraph that you are regularly put in
4 the embarrassing position of having to refuse to
5 collaborate with legitimate and important research?
6 A. Yes.
7 Q. You go on. Is what you are saying there that when you
8 do not have a consent form for the retention of tissue
9 in a hospital consent case, you simply cannot keep the
10 tissue and do not and did not do so?
11 A. I think there is a difference between retention of
12 tissue for diagnosis, for, for example, for a still born
13 baby, taking necessary tissue during the course of
14 a consent autopsy to be able to tell the parents why
15 that baby died and what steps might be taken to prevent
16 the same thing happening in a future pregnancy. I think
17 it would be quite legitimate with the general consent
18 form that existed at that time to take tissue for that
19 purpose. What I think I was uncomfortable about was
20 taking tissue for any further purpose, such as for
21 research, without that being explicitly spelled out in
22 the consent form.
23 Now, I am in danger of getting into the law, but
24 I believe the consent form has no real status in law,
25 but I would wish to be reassured that if we were going
0082
1 to take tissue for research purposes then it should be
2 spelled out in the consent form. My views have actually
3 hardened further on that issue in recent years.
4 Q. The position you were adopting personally in 1987 was,
5 "if I do not have a consent for it, I do not do it"?
6 A. That was my approach, yes.
7 Q. And you say at the very bottom of the page that your
8 practice does not differ significantly from that of your
9 colleagues in Bristol who retain tissues for teaching
10 and research but whose consent forms give them explicit
11 permission to do so?
12 A. Yes.
13 Q. There was obviously a difference in that they retained
14 the tissues; you did not?
15 A. Yes.
16 Q. So in what respects are you saying your practice was the
17 same?
18 A. I think my -- I have made it perfectly clear, I think,
19 that I was not going to take tissue for teaching and
20 research and did not do so. In the bottom
21 paragraph I was saying my retention of tissue for
22 diagnostic purposes was the same as my colleagues, even
23 though that was not spelled out either in the consent
24 form.
25 Q. That is hospital cases. So far as Coroner's cases are
0083
1 concerned, you say -- this is page 17 of your statement,
2 paragraph 56, the middle of the paragraph:
3 "In 1992 I wrote to them [paediatric cardiologists
4 and cardiac surgeons] indicating that I might stop
5 retaining hearts in Coroners' cases unless written
6 consent was obtained."
7 A. Yes.
8 Q. So you say you wrote to them again?
9 A. Yes.
10 Q. So that is a reference to having written in 1989, but
11 you do not have the letter?
12 A. That is correct.
13 Q. So in 1989 you were writing to cardiologists and cardiac
14 surgeons saying unless you have consent in every case --
15 A. I think in 1989 I was saying "how can we deal with this
16 difficulty", from the tone of the letter, but I think
17 neither you nor I know what was in that letter of 1989,
18 because we do not have it.
19 Q. That is why I am asking you?
20 A. I do not know.
21 Q. So what do you recollect?
22 A. I did not actually recollect that letter until one of my
23 colleagues very honestly pointed out to me that I had
24 written to them in 1989. I do not recollect that I had
25 done so. But from his reply, it looks as if I suggested
0084
1 a series of options for how we could bring the situation
2 into line with what I wanted, that is, that we should be
3 absolutely sure we were being legal and that we should
4 be sure that parents knew that the hearts were retained
5 for our clinico-pathological meetings.
6 But I think at that time my focus would have been
7 to be sure that we were well clear of the very blurred
8 legal line defining what is allowed.
9 THE CHAIRMAN: Mr Langstaff, may I interject for a moment?
10 A moment ago we were using the word "retention" as I saw
11 it in the context of initial taking. Now the word
12 "retention" seems to be used in a somewhat different
13 way. Would it be helpful -- and please reject this if
14 it is not helpful -- to talk about initial taking and
15 then keeping after that initial purpose has been served,
16 because that distinction --
17 MR LANGSTAFF: If you allow me, sir, I think Professor
18 Berry's answer to me a moment ago was in terms of
19 retention for the purposes of the clinico-pathological
20 conference. If we could find a form of words which does
21 indeed encapsulate the various times and processes, we
22 will do so. I am grateful for the suggestion, but if
23 I can just focus on that for a moment. When you used
24 the words "stopped retaining hearts" here in this
25 paragraph, are you talking about retention up and until
0085
1 and including the clinico-pathological conference but no
2 longer, or what? In what sense are you using the
3 expression?
4 A. I was using the expression in the sense that they might
5 not be available for their clinico-pathological
6 meeting.
7 I think I can perhaps explain this letter, that it
8 was an attempt on my part to draw the issue very clearly
9 to the attention of my colleagues.
10 Q. It is UBHT 308/18. Let us look at it. This is the one
11 to Mr Dhasmana?
12 A. In fact the letter, I think, shows it went to a number
13 of other people as well.
14 Q. Yes. We do not see it on the face of that, but we know
15 it did because we have other copies of it.
16 So this letter in common form goes to Mr Dhasmana,
17 Mr Wisheart and some of the paediatric cardiologists?
18 A. Yes.
19 Q. The top of the page:
20 "I know that we have discussed this issue before,
21 but increasing pressure from the Coroner's office and
22 the Department of Health as well as the Royal College of
23 Pathologists means that we must put our house in order."
24 A. Yes.
25 Q. You say:
0086
1 "When we last discussed it, you would ask your
2 patient's permission for us to retain cardiac tissue
3 from Coroner's postmortems"?
4 A. Yes.
5 Q. "Retain" in that sense, in what sense were you meaning
6 it in?
7 A. I was probably meaning it in both senses.
8 Q. Retain up and until the conference?
9 A. If, in the unlikely event that it was not required for
10 diagnosis and if it was legally retained for diagnosis
11 for the Coroner's purposes, then I felt a parent should
12 know that we were keeping it for other purposes -- for
13 the purposes of clinico-pathological review.