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Hearing summary

 

12 July 1999

 

Inquiry hearings today heard evidence from Mr Hugh Ross, current Chief Executive, United Bristol Healthcare NHS Trust (UBHT) and Mr Ian Barrington, General Manager, Directorate of Children’s Services, UBHT. Issues under discussion today were post-mortems and inquests. Mr Ross began by saying that procedures relating to post mortems (PMs) at UBHT during the period of the Inquiry were consistent with elsewhere in the NHS. He went on to describe the difference between a hospital PM and a Coroner’s PM and explained the responsibility of clinicians to obtain informed consent. He also discussed the issue of retention of tissue following PM and the keeping of records in relation to this. Mr Ross then described UBHT’s reaction to the disclosure of information to parents about their child’s PM and the co-operation of the Bristol Heart Children Action Group in this matter.

 

Mr Ian Barrington then went on to describe his responsibility in relation to PM, saying that he would have only been involved if a concern had been brought to his attention. He then talked about his role in dealing with requests from parents for information about their child’s PM. He described the setting up of a help line and subsequent investigations assisted by Professor Berry (Consultant Paediatric Pathologist) to deal sympathetically and swiftly, but as accurately as possible, with the queries from parents. He concluded by discussing the information surrounding PM that is now discussed with parents following bereavement.

 

FULL TRANSCRIPT

   1                     Day 37, 12th July 1999
   2
   3   (10.45 am)
   4   THE CHAIRMAN: Good morning, everyone. Good morning,
   5     Mr Langstaff.
   6   MR LANGSTAFF: Good morning, sir. I am sorry for the slight
   7     hiccup in arrangements this morning. We are now in
   8     a position to begin the week's proceedings. Mr Ross,
   9     the Chief Executive of the UBHT, is going to give
  10     evidence to us as the first witness on the issue of
  11     tissue retention.
  12        Today we will hear from him and from
  13     Mr Barrington, the Director of Children's Services. We
  14     will not then revisit the issue of tissue retention
  15     until next week, when we will deal with the national
  16     scene and see what the position has been across the NHS
  17     during the years with which we are concerned, 1983 to
  18     1995. Then it is envisaged that in the first week in
  19     which we sit in September, we will hear from parents who
  20     themselves have been affected in a number of ways by
  21     their discovery that their children's hearts or other
  22     organs were retained, and we will hear from Professor
  23     Berry, who is the one person, perhaps, at the UBHT now
  24     who can speak as to what the practice was and what his
  25     practice as pathologist was, throughout the period with
0001
   1     which we are concerned.
   2        We begin today, as I said, with Mr Ross, if you
   3     would come forward, please.
   4        Mr Ross, you have already taken the oath once
   5     before us, but if you would do so again, please?
   6            MR HUGH ROSS (affirmed):
   7            Examined by MR LANGSTAFF:
   8   Q. Mr Ross, you know our procedures, having given evidence
   9     before us on one previous occasion. Let us identify the
  10     statements that you make first in relation to this
  11     issue.
  12        Can I please have on the screen WIT 128/9?
  13        Is that the start of a supplementary statement,
  14     supplementary because it goes beyond your first
  15     statement?
  16   A. Yes.
  17   Q. In relation to this particular issue. If we turn,
  18     please, to page 16: your signature, and dated 2nd July.
  19     That is your signature, I take it?
  20   A. Yes.
  21   Q. Then there are two appendices to that. Then we come to
  22     your next statement at 128/25: that is the start of the
  23     statement, is it?
  24   A. Yes.
  25   Q. And page 28: again, that is your distinctive signature?
0002
   1   A. That is correct.
   2   Q. Again, there are annexes or appendices to that which
   3     take us up and through to page 37.
   4        Can we begin by looking at one of those annexes,
   5     Annex 3 at page 34.
   6        I should ask you, the contents of your statements
   7     you adopt, do you, as your evidence before us?
   8   A. Yes, I do.
   9   Q. I will not ask you about much of the detail that is
  10     contained in those statements, because anyone can read
  11     that for themselves. What I want to focus on is
  12     a number of issues.
  13        What we have here, what you have given us as
  14     Annex 3, is headed "Staff guidance on postmortem
  15     examinations".
  16        It begins:
  17        "Recent events have led to the production of this
  18     brief guidance sheet ..."
  19        When was this sheet produced?
  20   A. In the early part of this year. It is dated
  21     25th February 1999.
  22   Q. Although it is produced by Lindsay Scott, the Director
  23     of Nursing, it has, I take it, the full authority of the
  24     Trust?
  25   A. That is correct.
0003
   1   Q. You divide up the types of postmortem between those
   2     conducted on the instruction of the Coroner and those
   3     that might be described as "hospital postmortems"?
   4   A. That is correct.
   5   Q. There is I think unlikely to be any issue that the
   6     Coroner has the power, whether individuals consent or
   7     not, to require a postmortem.
   8   A. That is right.
   9   Q. It is also common ground, is it, that the hospital does
  10     not have the power to require whether or not anyone
  11     consents or objects?
  12   A. To the Coroner's postmortem, yes.
  13   Q. No, to any other postmortem. You distinguish between
  14     a Coroner's postmortem and a hospital postmortem?
  15   A. Could you just repeat the question?
  16   Q. So far as a hospital postmortem is concerned, can that
  17     be imposed, as it were, without the consent or at least
  18     the absence of objection of others?
  19   A. No, it cannot. It requires specific consent.
  20   Q. The present practice then is set out, is it, under
  21     "Coroner's postmortem "and "Clinicians postmortem."
  22        Dealing first with the present practice in respect
  23     of the Coroner's postmortem. The points are made in the
  24     document that consent is not -- the word "legally"
  25     appears, legally required, then it goes on to say it is
0004
   1     good practice to explain to the next of kin the reasons
   2     for a referral to the Coroner, or the Coroner's
   3     requirement for a postmortem.
   4        If the next of kin has some requests about the
   5     postmortem and how it is managed, it should be recorded.
   6        When was it decided that it was good practice to
   7     explain why a Coroner's postmortem was required, even
   8     though it could not legally be refused?
   9   A. This document came out of a review that I asked the
  10     Director of Nursing to undertake in the light of the
  11     events being discussed today, because I wanted to be
  12     sure that our practice was consistent and up-to-date.
  13        As I have said in my statement, the findings of
  14     her review that were indeed our practice was consistent
  15     with the rest of the NHS and was up-to-date, and in fact
  16     in some cases was better than elsewhere in the NHS.
  17        Nevertheless, the Director of Nursing and
  18     I thought that we ought to try, in the interim
  19     guidance -- because we are awaiting all sorts of
  20     developments I guess on this front -- we ought to try
  21     and reinforce good practice. It was clear to us that
  22     a more informed type of consent was important, even if
  23     there was effectively no choice on the part of relatives
  24     that a postmortem was to be undertaken.
  25        I cannot really give you a specific date; that was
0005
   1     just our feeling, our view, in the light of developing
   2     debate about this issue, that this was advice that we
   3     should give our staff, to reinforce what may well have
   4     been a practice in some parts of the Trust, but wanting
   5     to make sure it was best practice and reinforced right
   6     across the Trust.
   7   Q. Am I right in thinking that this staff guidance was
   8     issued because of recent events? By that I mean the
   9     furore which broke out when it was revealed that
  10     a number of hearts had been retained by the Trust
  11     following paediatric cardiac surgery over a number of
  12     years.
  13   A. That is right.
  14   Q. And it was evident, was it, that that had caused
  15     significant distress to a number of people?
  16   A. Indeed, it was, yes.
  17   Q. So what I therefore have assumed -- tell me if I am
  18     right or wrong about it -- is that this guidance is more
  19     up to date than anything which preceded it?
  20   A. That is a difficult question for me to answer, because
  21     I am not aware of all the details of the debates that
  22     have taken place in the Trust in the past about the
  23     issue of informed consent.
  24        I am aware that the consent forms specifically at
  25     the Children's and St Michael's Hospitals were made more
0006
   1     specific and more detailed in 1996, and I know from
   2     discussions with some of the medical staff concerned
   3     that there had been really quite detailed discussions
   4     since that date with any parents in this situation. But
   5     I cannot be specific as to how that had translated
   6     itself into written guidance, because this, as far as
   7     I am aware, was the first updating of guidance there had
   8     been in the Trust since the 1996 change of form.
   9   Q. So did you see this updating of guidance as changing
  10     anything?
  11   A. No. I think more reinforcing current practice, which
  12     we reassured ourselves was in line with practice
  13     elsewhere.
  14   Q. The current practice dates, you say, from 1996?
  15   A. The current consent form at the Children's Hospital and
  16     St Michael's dates from 1996.
  17   Q. So far as what is said here was good practice, which is
  18     being reaffirmed, and good practice to explain to the
  19     next of kin the reasons for a referral to the Coroner,
  20     are you able to say from your own knowledge of this
  21     Trust whether that good practice has been aimed at, at
  22     least throughout the time of your tenure of the post of
  23     Chief Executive?
  24   A. I cannot say that I have specific knowledge of the
  25     detail of practice on a day-to-day basis with regard to
0007
   1     this specific issue.
   2   Q. That is why I put the question as I did: do you know
   3     whether this at least had been aimed at, even if not
   4     necessarily achieved in practice?
   5   A. I think it is clear from the work that Professor Berry
   6     has done and the changes that he made to consent form
   7     and practice at St Michael's and the Children's
   8     Hospitals, that certainly the ethos there was of a much
   9     more informed debate about consent, regardless of
  10     whether it was a Coroner's or hospital postmortem.
  11        I do not think I could be quite as confident that
  12     the rest of the Trust had moved the practice forward in
  13     the same way. That was one of the reasons for trying to
  14     reinforce it with everybody through this particular
  15     note.
  16   Q. So are you telling me that there was a perception -- it
  17     may not entirely have been true, it may have been true,
  18     but a perception in your office that not everyone might
  19     be using good practice throughout the Trust?
  20   A. I think we, as a result of the Director of Nursing's
  21     survey, it became clear that not all staff are quite as
  22     confident in answering questions and dealing with these
  23     issues as we would have liked them to be, and we wanted
  24     to make sure they had that information and knew where to
  25     turn to for further advice. Basically in doing the
0008
   1     survey, we found there were some areas we felt we could
   2     further improve.
   3   Q. So the answer is "Yes" to the last question, is it?
   4   A. Yes, I think so.
   5   Q. Why was it thought to be good practice to explain the
   6     reasons to the next of kin for a Coroner's postmortem?
   7   A. I think, as will become clear as the evidence about this
   8     issue unfolds, there has been quite a sea change in
   9     a whole range of views about the importance of informed
  10     consent in all areas of health care practice, and this
  11     issue around consent for postmortems and the
  12     consequences of postmortems is, I think we all
  13     recognise -- at least, I hope we all recognise -- that
  14     the NHS's practice is ripe for review and ripe for
  15     overhaul.
  16        In all of our dealings with our patients and our
  17     relatives, we increasingly try to give much better
  18     information about what it is we intend to do on the
  19     patient's behalf, the reasons for that, the consequences
  20     of that and, wherever possible, what might or might not
  21     happen subsequent to that.
  22        The whole debate is moving forward all the time.
  23   Q. So this is part of the general move towards giving the
  24     patient, in this case the next of kin, greater
  25     information?
0009
   1   A. That is right. I think, if I look at the practice over
   2     my time in the NHS, it is clear that some aspects of
   3     practice in this area have moved forward far less slowly
   4     than public opinion has. This is perhaps one of the
   5     areas where perhaps for understandable reasons public
   6     debate is sometimes difficult and practice has not moved
   7     forward as fast as it should have done. I am sure many
   8     of my health colleagues will agree with me on that.
   9   Q. You used the expression a moment ago "with informed
  10     consent". Of course with a Coroner's postmortem consent
  11     is not necessary, as we have already discussed. So the
  12     purpose of the information, presumably, is not to enable
  13     someone to know what they are agreeing to or otherwise,
  14     but for some other purpose. Perhaps -- this is
  15     a suggestion you are free to accept or reject -- to
  16     spare or respect the feelings of the next of kin?
  17   A. No, I do not think that is the issue, really. I think
  18     the issue about informed consent for Coroner's
  19     postmortems is that although different Coroners
  20     interpret their responsibilities in different ways,
  21     I think it is the case that if the relatives do have
  22     particular objections or particular worries, that the
  23     Coroner has it within his or her power to take those on
  24     board and to adjust or alter their decision about what
  25     instructions they give to the pathologist about perhaps
0010
   1     even the undertaking of a postmortem, but even more
   2     particularly about whether organ tissue should be
   3     retained or not.
   4   Q. So the idea is to give information to the Coroner upon
   5     which the Coroner can then exercise his various
   6     discretions?
   7   A. I think that is one of the benefits of an informed
   8     consent process. I think in the long-term, clearly
   9     there are benefits also for relatives being better
  10     informed and understanding that even within a Coroner's
  11     situation there may be some options. In a short term of
  12     course those benefits are quite hard to identify because
  13     of the general distress and difficulty of the situation.
  14   Q. Can we just move away from this for a moment to
  15     UBHT 308/85?
  16        It is 1985, so very close to the beginning of our
  17     terms of reference. If we go down, we can see in the
  18     third line:
  19        "A copy of Robert Johnson's letter", he was
  20     a lawyer, "to me of 2nd December 1985 is enclosed."
  21        You see he makes the very important point about
  22      "... the level of loss and bereavements of the sort
  23     that occur at children's and maternity hospitals and the
  24     need to balance legal requirements with an entirely
  25     sympathetic approach when consent for postmortems are
0011
   1     being requested."
   2        It goes on to talk about postmortem consents.
   3        This is 1985. You have spoken about the change
   4     that there has been in approach, at least in terms of
   5     information, over the years from 1983 onwards. Reading
   6     this, one would perhaps see that there was, in 1985, at
   7     least consciousness of the particularly acute loss that
   8     parents might have in the event of the death of their
   9     child?
  10   A. Yes.
  11   Q. Is that how you read the fifth and sixth line? That is
  12     what it is referring to, I think, is it not?
  13   A. Yes.
  14   Q. "The need to balance legal requirements with an entirely
  15     sympathetic approach."
  16        That suggests that although there may be
  17     a requirement for a postmortem, nonetheless, one would
  18     approach it sympathetically, and would have to approach
  19     it sympathetically, even in 1985?
  20   A. That is what it suggests, yes.
  21   Q. So would it be fair to say that the approach you have
  22     been arguing as important for 1999 and beyond, was
  23     recognised within the Bristol hospitals at least by
  24     1985?
  25   A. It certainly appears to be recognised by Mr Harral.
0012
   1   Q. Are you in a position to say whether in fact the
   2     approach advocated there was achieved in practice?
   3   A. No, I am not, really.
   4   Q. I will come back to that. I appreciate that you may
   5     have some difficulty in commenting, since you came to
   6     the Bristol Trust in 1995.
   7        Before, when you were Chief Executive in your
   8     previous post, again, were postmortems carried out?
   9   A. Yes.
  10   Q. Some of them being Coroner's, some of them being
  11     hospital postmortems?
  12   A. Yes.
  13   Q. Was tissue, so far as you know, retained?
  14   A. Yes, it was.
  15   Q. And in that Trust, are you able to say whether the
  16     position was that in general consents were sought
  17     sympathetically, or whether they were often ignored or
  18     what the position might have been?
  19   A. I would be able to say with confidence that no
  20     postmortems would be undertaken without the appropriate
  21     consent. I am sure that no pathologist would undertake
  22     a postmortem examination unless he or she was sure that
  23     the appropriate consent had either been obtained or in
  24     effect given by the Coroner.
  25        I cannot recall the detailed arrangements that
0013
   1     applied on a day-to-day basis, but the Trust worked very
   2     hard to try and make sure that all of our points of
   3     contact with parents and relatives on difficult issues
   4     were handled as sensitively as they should have been,
   5     and I am sure this was one of the issues that would have
   6     been covered as part of that. I remember some specific
   7     work that the Trust did on bereavement issues and how
   8     they should be handled and I think I can recall that
   9     that would have wrapped-in issues around postmortem
  10     consent and so on but I cannot remember any more detail
  11     than that.
  12   Q. So far as Bristol itself was concerned, can we go back
  13     to WIT 128/34? We dealt with the Coroner's postmortem.
  14     If you can just have a look for a moment at the
  15     clinician postmortem: it begins with "The key points to
  16     remember are if the senior clinician wishes a postmortem
  17     to be carried out or confirmation of diagnosis or
  18     research", the next words are underlined,
  19     "the express and written consent of the next of kin is
  20     required."
  21        That is emphasised. Was it emphasised because of
  22     any feeling that it was not being done?
  23   A. Not at all, no. The Director of Nursing's review, as
  24     I mentioned in my statement that is attached to this
  25     appendix, reassured her and me that consents were always
0014
   1     being appropriately sought when a hospital postmortem
   2     was carried out. I think her feeling was that
   3     nevertheless it was such a fundamentally important issue
   4     that it ought to be underlined to remind everybody that
   5     this must always be the case.
   6   Q. So if we just go overleaf, we see the underlining again
   7     in the first of the bullet points, the second of the
   8     paragraphs on the page: "The medical staff must ensure
   9     [underlined] that the next of kin understand the reasons
  10     for the PM [postmortem] request."
  11        So both consent and full information so that the
  12     individual giving consent knows they should give it?
  13   A. Yes.
  14   Q. The consequence was, then, with two systems of
  15     postmortem operating, the obligatory one where the
  16     Coroner says the postmortem must be performed, no issue
  17     of consent, but you recognise the need for information
  18     and a sympathetic approach; and secondly, the hospital
  19     postmortem where consent is, as you put it here,
  20     required, leave aside what the law says, because not
  21     being a lawyer, you would not be able to comment
  22     directly on the legal issues. In due course, no doubt
  23     the Inquiry will publish its own views of the law after
  24     consultation with the legal advisers of any participant.
  25        But if there is a critical distinction between the
0015
   1     two -- the one does not need consent; the other does --
   2     was there any system that you are aware of for recording
   3     the fact that consent had been given?
   4   A. Yes, there was. There was the form on which the consent
   5     was recorded for a hospital postmortem, and it is
   6     recorded for a hospital postmortem. Without that form
   7     the pathologist will not proceed.
   8   Q. Was there any central register kept of those occasions
   9     when postmortems were conducted?
  10   A. The pathologist would keep records of the postmortems
  11     that they had conducted in the various locations in the
  12     Trust, the two locations where they were undertaken.
  13   Q. If tissue was retained after a postmortem, would there
  14     be a register of the retention of that tissue?
  15   A. Records would be kept: in quite what format, that might
  16     vary, but records would be kept, yes.
  17   Q. The reason for my asking you those questions is this:
  18     was it easy for you, when you had to enquire as to the
  19     number of hearts that had been retained from paediatric
  20     cardiac surgery, to identify with any precision what the
  21     number actually was?
  22   A. No, it was not easy initially, and that is because the
  23     way the records were kept did not lend itself to easily
  24     answering that question. There had been obviously
  25     a considerable number of postmortems over many years for
0016
   1     a variety of purposes and the way that the information
   2     was stored and catalogued was based around other
   3     criteria than immediately identifying a particular group
   4     of postmortems. So it did take quite some time to be
   5     absolutely sure about the numbers of retained hearts and
   6     other organs that were related to the issue of
   7     paediatric cardiac surgery.
   8   Q. Equally, was it easy or difficult to know what
   9     percentage of tissues retained were retained following
  10     on the one hand a Coroner's postmortem and on the other,
  11     a hospital postmortem?
  12   A. That was easier to establish. The number of hospital
  13     postmortems in fact has been dropping steadily in recent
  14     years across the NHS for a variety of reasons, I think,
  15     so it was clear right from the start that the great
  16     majority of these were Coroner's postmortems. I think
  17     that is reflected in statements that you have received
  18     or will receive.
  19   Q. I think you yourself quoted some 85 per cent of the
  20     retentions were retained in consequence of or following
  21     a Coroner's postmortem?
  22   A. Yes. That would be a figure I suspect that
  23     Professor Berry can give you.
  24   Q. I was going to ask where it came from. The figure of
  25     85 per cent came to you from Professor Berry. Can
0017
   1     I have a look at the date of that? It is UBHT 307/10.
   2     It is 11th February 1999, and it is addressed to local
   3     MPs and to Nick Harvey, and it is from you.
   4        If we just go to the bottom paragraph, where
   5     paragraph 1 is on the screen, we can see:
   6        "The majority (some 85 per cent) of the
   7     postmortems were ordered by the Coroner. The rest were
   8     requested by the hospital ..."
   9        So that is 85 per cent, a figure on 11th February
  10     1999.
  11        Can I look at page 308/76: an article published in
  12     the Journal of Clinical Pathology in 1989, so it is ten
  13     years earlier. It is from Mr Russell and Mr Berry,
  14     a senior pathologist throughout the period from 1985
  15     until now, was he not?
  16   A. Yes.
  17   Q. Can we scroll down, please?
  18        "Material and methods" on the left-hand side. We
  19     see that 76 cases from the Bristol paediatric cardiology
  20     unit had necropsies performed by the Paediatric
  21     Pathology Department during a three-year period, 1985 to
  22     1987. So it is three years, 76 cases. All children had
  23     a clinical diagnosis of congenital heart disease.
  24        If we look across to results "Results":
  25        76 consecutive cases from the Bristol paediatric
0018
   1     cardiology and cardiac surgery departments were
   2     reviewed. The sex ratio was exactly equal, with 38 boys
   3     and 38 girls. "48 (16 per cent) of the necropsies were
   4     performed for Her Majesty's Coroner..."
   5        Going overleaf (UBHT 308/77), so we can see how it follows on,
   6     there is a comma and then it talks about those, and then
   7     it deals with the methods being used.
   8        If it was 63 per cent for the Coroner, it was
   9     37 per cent for the hospital, a ratio of 2 to 1, and
  10     very different from 85 per cent on the one hand and
  11     15 per cent on the other.
  12        I do not know whether you can help. Can you help
  13     at all as to why those figures should be so different?
  14   A. I think firstly the 85 per cent reflects the situation
  15     now, as I understood Professor Berry to explain it to
  16     me, and I think it reinforces the fact that consents for
  17     hospital postmortems have been much less in number as
  18     time has gone on. For a variety of reasons, we do far
  19     less hospital postmortems than we used to, which would
  20     obviously influence the ratio.
  21   Q. If the figure which he quotes is a reflection of all the
  22     cases, as it sounds as though it is and he can tell us,
  23     between 1985 and 1987, the three-year period we have
  24     identified, then there would be a change from roughly
  25     two-thirds/one-third down to 85 per cent/15 per cent of
0019
   1     today, the average would be somewhere in between.
   2   A. Yes.
   3   Q. So do we know, actually, of the retained hearts and
   4     tissues, what percentage had the Coroner's postmortems
   5     and what percentage the hospital postmortems?
   6   A. I do not, but I suspect Professor Berry does.
   7   Q. We shall in due course ask him, and I mention that now
   8     so that anyone who is concerned with the point will be
   9     alerted to it.
  10        So far as the hospital postmortem is concerned,
  11     and the taking of consent, you say, in your statement --
  12     WIT 128/10 -- in paragraph 2, that you knew that
  13     hospital postmortems were not carried out without
  14     consent. One of your repeated themes throughout,
  15     I think, is that whatever the horror may have been for
  16     people seeing the retention of tissues, the Trust had
  17     done nothing which was illegal?
  18   A. That is correct.
  19   Q. And you go on to make the point that although the
  20     notification of a postmortem or the receiving of consent
  21     for one was not often accompanied by a detailed
  22     discussion and information -- you are making a plea
  23     there, are you, for greater information to be given to
  24     parents and relatives?
  25   A. Absolutely. I think, if I think back over a number of
0020
   1     years, it would not be unfair to say that the NHS had
   2     perhaps handled these sorts of issues in a somewhat
   3     cavalier manner in the distant past, and I think
   4     practice, as I said, has been far too slow to change,
   5     and although there may have been a number of discussions
   6     over the years about the issue, I do not think practice
   7     generally moved forward as fast as it should have done.
   8     That reflects my belief that, as I say, really informed
   9     consent was not always the order of the day, which
  10     clearly it should have been.
  11   Q. I do not know if you can help with this or not, but
  12     would you please have a look on the screen at what we
  13     may get from a number of the documents as perhaps having
  14     been the practice here in Bristol.
  15        Could I have a look, please, at document
  16     UBHT 308/18?
  17        It is 6th August 1992, a letter from Mr Berry to
  18     Mr Dhasmana. Can we scroll down, please?
  19        " ... when we last discussed this matter it was
  20     left that you would ask your parent's permission for us
  21     to retain cardiac tissue from Coroner's postmortems.
  22     You will recall that the pathologist is only allowed to
  23     retain tissue for the purposes of establishing the cause
  24     of death and that for the Coroner's purposes the cause
  25     of death can be general."
0021
   1        Just pausing there, the point Mr Berry is making
   2     is this, is it: although the Coroner may require
   3     a postmortem, if any tissue is kept afterwards, it has
   4     to be kept for purposes relating to the cause of death
   5     because that is what the postmortem is to establish, the
   6     cause of death.
   7        The point perhaps he is making is that there is
   8     therefore no permission, unless it is sought, for the
   9     retained tissue to be used for any other purpose, such
  10     as research or teaching.
  11        Is that what you would take from that paragraph,
  12     or not?
  13   A. Yes, I think so. I would not wish to second-guess
  14     Professor Berry on this issue.
  15   Q. Again it is something obviously I shall have to take up
  16     with him. The fourth paragraph:
  17        "In future, we will not be able to retain the
  18     heart unless there is a signed statement in the notes
  19     from one of the doctors looking after the child that
  20     they have satisfied themselves that the parents of the
  21     child do not object to the retention of tissue during
  22     the course of the Coroner's postmortem examination. In
  23     explaining this to parents, it may be helpful for you to
  24     emphasise that part of the heart will always be returned
  25     to the body and only that part involved in the
0022
   1     malformation or surgery will be retained."
   2        So the words "in future we will not be able to
   3     retain the heart unless there is a signed statement"
   4     suggests that up until that stage it had at least been
   5     the practice of some not to record in writing and have
   6     signed by any relative that there was consent for the
   7     retention of tissue following a Coroner's postmortem?
   8        That is what it would imply, presumably?
   9   A. Yes, I think so.
  10   Q. There is a reply to that. Can we look at UBHT 308/17,
  11     26th August 1992:
  12        "Thank you very much for your letter dated
  13     6th August. Lately there has been some oversight on my
  14     part to discuss the matter with parents and relatives
  15     and therefore consent was not taken by my junior staff."
  16        Just pausing there, that looks as though he is
  17     saying that whoever the doctor was dealing with, the
  18     parent or relative, that on a number of occasions of
  19     which he is aware, none of the requisite consents were
  20     actually taken, whether orally or in writing?
  21   A. I think it means that he felt that the more detailed
  22     discussion about the purpose of the retention of tissue
  23     after a Coroner's postmortem was not being raised with
  24     parents and relatives. If these are Coroner's cases
  25     then clearly the issue of consent in general terms would
0023
   1     not be relevant.
   2        That is a more narrow definition of the Coroner's
   3     powers and responsibilities than I believe to be the
   4     case.
   5   Q. That is a legal issue and we will have to leave that,
   6     I think, to the lawyers. Certainly, what Professor
   7     Berry appeared to be saying was, if you are going to
   8     keep tissue for purposes other than keeping it because
   9     it demonstrates the cause of death, if you are going to
  10     keep tissue for the sake of research or teaching, there
  11     needs to be some permission.
  12        We have looked at that letter. That appears to be
  13     what he was saying?
  14   A. That is right.
  15   Q. Mr Dhasmana's reply, the second sentence, the words:
  16        "Therefore consent was not taken by my junior
  17     staff."
  18        That suggests on some occasions consent had not
  19     actually been taken?
  20   A. That is what it suggests, yes.
  21   Q. You were not there, you cannot necessarily comment on
  22     what happened in Bristol, but two points arise. First
  23     of all, if that is the case -- and Mr Dhasmana will have
  24     to say what he meant by this and he has not yet had an
  25     opportunity to comment upon it, it needs to be said --
0024
   1     does it follow that the Trust of 1992, depending on what
   2     the law actually was, was arguably in breach of the law?
   3   A. I do not know, because I do not know how specific the
   4     law is about what should or should not be retained after
   5     a Coroner's postmortem and what discretion the Coroner
   6     actually has. I do know --
   7   Q. So it all depends on a view of the law?
   8   A. Also the behaviour of the Coroner, to be honest, because
   9     I think it is the case that different Coroners interpret
  10     their responsibilities in different ways. Some leave it
  11     to the discretion of the pathologist to retain tissues
  12     if they wish, others are more specific. More than that
  13     I could not helpfully say, I do not think.
  14   Q. The second point which arises is that consent was not
  15     taken by "my junior staff". The author of the letter
  16     seems to think that the question of consent is
  17     a question for junior staff rather than for him as
  18     a consultant.
  19        Can I, with that in mind, just ask you to go back
  20     in time to 1991? It is UBHT 212/9. Can we scroll down,
  21     please, and go overleaf (UBHT 212/10) to paragraph 5, it is 5.3:
  22        "Support for paediatric services ... postmortem:
  23     all children who die in the peri-operative period should
  24     have a postmortem. Requests to parents for permission
  25     should be made by consultants."
0025
   1        That was the draft, as you have seen from looking
   2     at the first page, the draft protocol. The date was
   3     9th April 1991. In September 1991 there is a slight
   4     change to paragraph 5.3.
   5        Can we have a look, please, at page UBHT 25/242?
   6        "Revised policy, September 1991".
   7        Paragraph 5 again, please (UBHT 25/243). There as we see in
   8     paragraph 5.3, the wording -- the first sentence is the
   9     same. Second sentence:
  10        "Requests to parents for permission should usually
  11     be made by consultants."
  12        So there is a shift from the April to the
  13     September drafts in the revised policy to "usually
  14     consultants".
  15        Three questions for you: first of all, so far as
  16     Bristol was concerned, when you came as Chief Executive,
  17     who was it that you understood generally speaking sought
  18     consent for either postmortems or for retention of
  19     tissue after postmortems?
  20   A. I think my assumption would have been that the same
  21     practice would apply as elsewhere in the NHS, whereas
  22     this was one of the responsibilities the consultant
  23     medical staff generally delegated to their juniors.
  24   Q. So you do not know but you assume that is what happened?
  25   A. Yes.
0026
   1   Q. Secondly, do you know whether the policy which first of
   2     all looked for "consultants" and then "usually
   3     consultants", was actually honoured here in Bristol? It
   4     is something you may have found out since, you may not
   5     be able to comment on.
   6   A. I do not know. I have never seen this particular
   7     document before.
   8   Q. The third question was what you have already
   9     anticipated: what in your understanding was the practice
  10     throughout the NHS generally as to who, what status of
  11     person, would actually ask for the consent?
  12   A. Yes, I think the answer is that generally that would be
  13     delegated to junior medical staff, but sometimes
  14     a practiced and experienced patients' affairs officer or
  15     relatives' officer, someone like that, would undertake
  16     that task at the request of the consultant medical
  17     staff. It is a task I have done myself early in my
  18     career.
  19   Q. I suppose the fourth question is: do you understand
  20     there to be any particular reason -- if you cannot
  21     comment, please do not -- why the policy in 1991 should
  22     appear to emphasise the status of the person actually
  23     seeking the consent?
  24   A. No, I cannot imagine why that should have come up, or
  25     indeed what the reason for the document was.
0027
   1   Q. Again dealing with the question of retention of tissues,
   2     you mentioned a moment or two ago the importance of the
   3     Coroner and the approach that the Coroner might take.
   4        Can we have a look, please, in respect of Bristol,
   5     at a document from August 1986, UBHT 308/50?
   6        It is from Dr Berry to Dr Parker. Because
   7     Dr Parker is head of the Homograft Department of the
   8     National Heart Hospital, it looks as though it may be in
   9     relation to Dr Parker wishing to have available for use
  10     therapeutically in his surgery homografts taken from
  11     patients in Bristol.
  12        Dr Berry expresses support in the first two
  13     sentences. Then says:
  14        "I see two difficulties: firstly, our Coroner in
  15     Bristol will quite properly not allow us to take tissues
  16     from cases in his jurisdiction without consent of the
  17     relatives, which can usually not be obtained."
  18        The "in his jurisdiction" probably relates, one
  19     would imagine -- Professor Berry can tell us -- to the
  20     scope of the Coroner's powers as opposed to his
  21     territorial jurisdiction.
  22        So the first point he makes is, the Coroner in
  23     Bristol at the time does not allow tissues to be taken
  24     without the consent of relatives.
  25        Secondly:
0028
   1        "My clinical colleagues have not allowed me to
   2     change the form of our hospital postmortem request form
   3     to include permission for removal of tissues for
   4     teaching, research or organ donation."
   5        He asks for help in how to deal with it. So there
   6     is resistance, as it were, on two fronts to anything
   7     being done with tissues after death that Professor Berry
   8     was then talking about. One was the Coroner and the
   9     other was fellow clinicians.
  10        Does that appear to be a fair interpretation of
  11     what is said in the letter, do you think?
  12   A. Yes.
  13   Q. You probably cannot comment, but I should show you again
  14     for the sake of completeness and in order to identify
  15     that I should pick it up with witnesses to come, the
  16     reply that comes at 308/65 on 16th September 1986, three
  17     weeks later.
  18        We see at the bottom of the page it is from Robert
  19     Parker. Back a bit, please.
  20        He deals with the first point at the beginning of
  21     the second paragraph. He talks about discussions which
  22     have been held with the Coroner for Avon Area 2 about
  23     obtaining relatives' permission and says:
  24        "Further discussions are still taking place with
  25     the Coroner."
0029
   1        Then he deals with the position with colleagues,
   2     and offers writing to the Chairman of the hospital's
   3     ethical committee.
   4        Can you help: were problems like this commonplace
   5     at all elsewhere in the NHS that you know of at this
   6     time?
   7   A. No. I was not aware at the time or now in retrospect
   8     that there was this debate about what the Human Tissue
   9     Act did say. I think Parker is saying something
  10     different there about the Human Tissue Act. But no,
  11     I was not aware of this particular debate.
  12   Q. To bring it a little bit nearer to date, can we have
  13     a look at a document some three years later,
  14     UBHT 308/20? It is from Mr Joffe to Dr Berry. It
  15     refers back to a letter we do not have and which we hope
  16     to obtain if a copy still exists. It appears to relate
  17     to "Coroners 'Cardiac' Postmortems" and talks about
  18     problems relating to the retaining of tissues long-term,
  19     so problems identified and aired in 1986 and 1989. Can
  20     we have a look now at 9th September 1992, which is
  21     UBHT 308/170.
  22        We saw a moment or two ago Mr Dhasmana's reply to
  23     Mr Berry's letter of 6th August. That was the letter
  24     saying "get consent". I am summarising it very briefly
  25     for identification purposes, but you will recall the
0030
   1     letter.
   2        Here we have Mr Wisheart's response, the third
   3     line:
   4        "I was slightly surprised to receive this advice
   5     as I had been recently told by Dr Sheffield that this
   6     problem had eased a little under the jurisdiction of the
   7     new Coroner."
   8        Who is Dr Sheffield? Can you help?
   9   A. He is a pathologist at the UBHT.
  10   Q. The "jurisdiction of the new Coroner" one suspects is
  11     the way in which the new Coroner exercised his
  12     discretions within his jurisdiction?
  13   A. I suspect so, yes.
  14   Q. So it looks as if Mr Wisheart's view is that on the
  15     question of the retention of organs, in so far as it
  16     fell within the discretion of the Coroner obviously
  17     practises differed as between Coroners?
  18   A. Yes.
  19   Q. And the approach of the new Coroner appears to be easier
  20     for clinical purposes than of the previous Coroner, as
  21     he says it. Whether that is the case or not, we shall
  22     probably find out, but that is what he appears to be
  23     saying.
  24        Can you help as to the difference of approach
  25     Coroners take on these issues?
0031
   1   A. I am not sure I can add more to what I have already
   2     said. Clearly there was a debate going on for a number
   3     of years between hospital clinicians, both locally and
   4     nationally, and Coroner's officers about what was
   5     required under the law or what was not required under
   6     the law and how that should be reflected in local
   7     practice. It is not a debate I have been aware of
   8     before. I do not think I can add anything to that,
   9     really.
  10   Q. An article was written in 1987, I think it was, by
  11     Bernard Knight, the Home Office pathologist. We can
  12     perhaps have a look at it. It is UBHT 308/44. That is
  13     where it begins.
  14        "Legal considerations in the retention of
  15     postmortem material."
  16        He describes the difference of approach. He deals
  17     with Coroner's autopsies first. We can go overleaf.
  18     Then "clinical autopsies" or what I have called
  19     "hospital autopsies".
  20        What, however, he says in respect of Coroner's
  21     autopsy -- it is the paragraph top left, about six lines
  22     down:
  23        "However, the retention of tissues for teaching
  24     and research is not covered by the Coroner's permission
  25     and the Coroner cannot grant such permission as it is
0032
   1     not within his remit to do so. He can forbid the use of
   2     any tissue for such purposes, but positive permission
   3     must be obtained under the terms of the Human Tissue
   4     Act."
   5        Professor Knight, I hope I do not do him any
   6     disservice, but he is not a lawyer as such and it may be
   7     that the statement is not entirely accurate legally; we
   8     shall find out. As I say, it is anticipated by the
   9     Inquiry that the legal representatives of the
  10     participants will have an input into the view of the
  11     law.
  12        Certainly the view that was expressed to
  13     pathologists in the journal is as you see it: that the
  14     Coroner can order the postmortem, but retention of
  15     tissues beyond that for other purposes for teaching and
  16     research requires permission?
  17   A. That is what it says, yes.
  18   Q. That is what it says. Did you know of this article at
  19     all?
  20   A. No.
  21   Q. Did you know of those views?
  22   A. No.
  23   Q. Did you take your lead from people such as Professor
  24     Berry, who might have a greater familiarity with such
  25     views?
0033
   1   A. Obviously one relies on the advice that one receives
   2     from people better qualified than oneself to give
   3     opinions on certain things, but I think the whole
   4     section of this evidence shows what a contrasting set of
   5     views there are about what the Coroner's powers actually
   6     are and how they are interpreted. I do not suppose
   7     Bristol was necessarily different from elsewhere,
   8     although I have no evidence about what did happen in the
   9     past.
  10   Q. Thus far we have looked at the requirements for consent
  11     as you understood them to be, and how they may have been
  12     understood locally before you came on the scene and your
  13     understanding of who it was that took the consent if and
  14     when it was needed, and also your understanding as to
  15     how the matter was or was not recorded.
  16        So far as recording is concerned, just one further
  17     matter to ask you about: would I be right in thinking
  18     that there may well have been no formal record made of
  19     consent in any given case, even although your belief is,
  20     as you have told us, that consent would have been
  21     obtained perhaps orally?
  22   A. No. I do not think -- in fact I am pretty sure that
  23     a pathologist would not proceed with a hospital
  24     postmortem unless he or she had written evidence of the
  25     permission of relatives.
0034
   1   Q. Because they themselves would not be in direct contact
   2     with the relatives, presumably?
   3   A. That is correct.
   4   Q. So they would have to rely upon --
   5   A. A signature on a consent form.
   6   Q. Or somebody, a doctor, saying "I have spoken to X and
   7     I have got consent"?
   8   A. Well, my advice is that any pathologist who proceeded on
   9     that basis would be very foolish indeed.
  10   Q. Can I turn from those matters to matters relating to
  11     Coroner's postmortems and the way in which they
  12     happened?
  13        What is the present practice as to informing the
  14     Coroner of a child's death following surgery?
  15   A. It is generally the responsibility of the medical staff
  16     to inform the Coroner.
  17   Q. So the consultant in charge of a child's case?
  18   A. It might be the consultant, it might be one of his
  19     junior medical colleagues.
  20   Q. Is it a matter of practice nowadays for that contact
  21     with the Coroner's office to be recorded somewhere?
  22   A. I would suggest that good practice would ensure that
  23     such a contact was recorded in the medical notes, but
  24     I cannot give you a more definite answer than that.
  25   Q. Are you prepared to comment on how far good practice may
0035
   1     or may not have been observed over the years since 1983
   2     in that respect?
   3   A. Not really, no.
   4   Q. So far as the reply from the Coroner is concerned, does
   5     the Coroner deal with such cases on an individual basis,
   6     saying "You told me about the death of X, carry out
   7     a postmortem?" (Interruption by mobile telephone in
   8     public gallery)
   9        Let me ask the question again: so far as the
  10     Coroner's response is concerned, would it be a response
  11     in each individual case such as "I instruct you to carry
  12     out a postmortem in the case of X", or is the practice
  13     that it is more general that the Coroner has, as it
  14     were, issued standing instructions in any case where
  15     a child dies, carried out a postmortem? (Interruption
  16     by mobile telephone in public gallery)
  17   A. I am sorry, Mr Langstaff, I will have to ask you to
  18     repeat it again.
  19   THE CHAIRMAN: Mr Langstaff, maybe looking at the time,
  20     that may be an appropriate time to take a break for
  21     15 minutes until 5 past 12, and then we can all check
  22     our electronic devices to make sure they do not go off
  23     again.
  24   MR LANGSTAFF: Certainly.
  25   (11.51 am)
0036
   1               (A short break)
   2   (12.10 pm)
   3   MR LANGSTAFF: Mr Ross, I had just been asking you whether
   4     you knew whether or not the Coroner, when he was told by
   5     the hospital that someone had died, within two days of
   6     operations, whether the response was from the Coroner's
   7     office, "please conduct a postmortem", or "I require you
   8     to conduct a postmortem", something along those lines,
   9     "in respect of X", or whether there was, as it were,
  10     standing instructions from the Coroner to do so in such
  11     a case?
  12   A. I do not know what the practice was. My assumption has
  13     always been that each case would be considered on its
  14     merits so that a specific decision would be given. That
  15     emphasises my assumption rather than a fact that I know.
  16   Q. It could be a bit difficult perhaps for there to be
  17     merits, as it were, in any such case unless sufficient
  18     information was given to the Coroner to make
  19     a determination?
  20   A. Yes, I perhaps should be more specific in what I say.
  21     There may be occasions when, even though the case falls
  22     within the Coroner's jurisdiction, the Coroner is
  23     satisfied that enough is known about the cause of death
  24     for him or her to put aside the normal request for
  25     a postmortem to take place.
0037
   1   Q. The pathologist who is required to conduct a Coroner's
   2     postmortem would obviously know it was a Coroner's
   3     postmortem?
   4   A. Yes.
   5   Q. How would he know that? There is some form put in
   6     front of him, is there?
   7   A. I believe he has a specific request for the Coroner to
   8     undertake the postmortem.
   9   Q. There is a difference -- we have explored it a little
  10     bit in the first part of this morning's questioning and
  11     it was apparent from what Professor Knight had to say in
  12     the article that we looked at, the difference between
  13     the conduct of the postmortem for the Coroner and the
  14     keeping of any tissue afterwards.
  15        My understanding of the point, so that those who
  16     listen to this at a distance can follow it, is that
  17     there is an obligation under the Coroners' Rules,
  18     rule 9, for any material removed for examination at
  19     postmortem to be retained if it bears upon the cause of
  20     death.
  21        But there is no such obligation in respect of any
  22     other tissue, so the argument is that tissue cannot be
  23     used even after a Coroner's postmortem for research or
  24     teaching without at least an absence of objection
  25     established so far as the relatives are concerned --
0038
   1     a difference between the postmortem and the retention of
   2     tissue, in other words.
   3        If that is a proper description of the law, is it
   4     one which you yourself have understood to be the
   5     position, or is it not?
   6   A. No, it is not, and I think the evidence that you have
   7     shown this morning has made me aware of an ambiguity in
   8     this area, perhaps, a debate amongst professional staff
   9     and clinical staff that I was not previously aware of.
  10   Q. Whatever else may come out of this section of the
  11     Inquiry's proceedings, you would hope, would you, for
  12     the future, if the law is at all unclear, that clarity
  13     be provided?
  14   A. Absolutely. I think the Human Tissue Act of 1961 has
  15     been criticised for a long time for looseness of its
  16     drafting, and I am sure that we need to make sure that
  17     any new law or guidance on this issue is absolutely as
  18     clear as it can be.
  19   Q. The other point you were making this morning is the
  20     difference as it were between the legalities of the
  21     matter, where the Coroner can simply say "I will have
  22     a postmortem and it must be performed", and the approach
  23     which the Trust would wish to adopt, which is perhaps
  24     more of a moral approach in recognising some of the
  25     sensitivities of the situation.
0039
   1        Would you wish or hope for any national guidance
   2     on how best to respect the moral position as well as the
   3     legal position?
   4   A. I think that would be very helpful.
   5   Q. So far as the development of this particular episode
   6     is concerned, I am going to ask you in a moment or two
   7     how the Trust handled the concerns when they broke. But
   8     first, can you tell me, from your experience of working
   9     elsewhere in the National Health Service, was the
  10     position in Bristol different or the same as the
  11     position elsewhere so far as both postmortems and
  12     retention of tissue was concerned?
  13   A. I believe it to have been the same as elsewhere.
  14   Q. What do you base that belief on?
  15   A. Conversations with other Trusts, Chief Executives of
  16     Trusts, conversations with senior pathology staff, and
  17     their accounts of their discussions with pathologists
  18     elsewhere and obviously all of the thinking we have done
  19     about this issue in recent months.
  20   Q. So is the realisation that Bristol was, in this
  21     respect, no different; is that a fairly recent
  22     realisation?
  23   A. I had cause to think very carefully about it, obviously,
  24     given the events of the last few months, but I was
  25     reassured in my assumption when the Department of Health
0040
   1     confirmed that the practice in Bristol had not been
   2     different from elsewhere and that was confirmed by the
   3     Royal College of Pathologists as well.
   4   Q. So what we are talking about as having happened in
   5     Bristol over the years 1983 to 1995 reflects national
   6     practice rather than any particular local variation of
   7     it?
   8   A. I think, yes, and it is the case, I know, that large
   9     quantities, large numbers of organs and other tissues
  10     have been retained over the years and the degree of
  11     knowledge that parents and relatives have had about
  12     that, I think, has been partial, to say the least. So
  13     I do not think the Bristol practice was different --
  14     rightly or wrongly, but I do not think the Bristol
  15     practice was different from practice elsewhere.
  16   Q. You have told us you cannot speak as to how the
  17     practice which was supposed to operate in fact operated,
  18     which would obviously depend upon individual clinicians,
  19     although your belief is that in each case the clinician
  20     sought any consent that they believed to be required.
  21        Secondly, you have told us you cannot comment but
  22     you appreciate from the documents which I have shown you
  23     that there may have been a difference of approach as
  24     between one Coroner and another so far as the exercise
  25     of any discretions were concerned?
0041
   1   A. That is correct, yes.
   2   Q. You have appreciated and commented upon the
   3     uncertainties that there may be in the law and people's
   4     appreciations of the law?
   5   A. Yes.
   6   Q. So that one Trust or one hospital attempting to follow
   7     the law might actually have been carrying out a practice
   8     slightly different from elsewhere, but you think not
   9     significantly so?
  10   A. That is correct, yes.
  11   Q. In 1996, did it become apparent that tissue had been
  12     retained in respect of at least one child who had died
  13     undergoing paediatric cardiac surgery?
  14   A. The first time the issue had specifically come to my
  15     attention was early 1996, yes.
  16   Q. May we have a look, please, at document UBHT 308/205.
  17        This appears to be a file note from Professor
  18     Berry.
  19        On May 8th 1996 Professor Berry records meeting
  20     Mrs ... (the name is blanked out) in response to her
  21     request to see her child's heart.
  22        Can we scroll down? The middle of the page:
  23        "Mr ... and Mrs ... asked whose responsibility it
  24     was to inform parents that tissue would be retained.
  25     I replied that in Coroner's postmortems there was
0042
   1     probably no requirement in law, but that I would expect
   2     the clinician who reported the case to the Coroner to
   3     explain to relatives that there would be a postmortem
   4     examination and what it entailed."
   5        So once again we have the distinction between the
   6     legal position and what one might call the moral
   7     position?
   8   A. Yes.
   9   Q. And the expectation of Professor Berry that the
  10     clinician would actually discuss the issue with the
  11     relative concerned.
  12        It records how it was arranged that the heart
  13     would be taken. Permission was given; indeed, I think
  14     that the lady had a letter with her enabling her to take
  15     her child's heart away with her.
  16        Can we go to page 206?(UBHT 308/206) It is part of the same
  17     note. The postscript:
  18        "On Monday 10th June I spoke to HM Coroner who
  19     confirmed that retention of the heart from cardiac
  20     surgical cases is appropriate but that his
  21     responsibility for the tissue ceases once he has
  22     completed his investigation."
  23        That appeared to be a general view expressed by
  24     the Coroner as recorded by Professor Berry.
  25        From your experience elsewhere in the NHS, does
0043
   1     that seem a standard view or are you not in a position
   2     to comment?
   3   A. I do not recall ever having had to consider that
   4     specific issue. Therefore, I would not really be able
   5     to comment.
   6   Q. The paragraph immediately above that:
   7        "... since received a letter from Mrs ... thanking
   8     me for what she said was a helpful interview. I have
   9     also received a letter from Mrs ... seeking
  10     clarification of an apparent discrepancy between our
  11     discussions and the subsequent television interview."
  12        What happened was, was it, that there were,
  13     following the giving back of the heart to the lady
  14     concerned, she was interviewed or filmed on TV?
  15   A. I believe so, yes.
  16   Q. Then Professor Berry was asked for his comments?
  17   A. That is correct, yes.
  18   Q. You were Chief Executive at this time?
  19   A. That is right.
  20   Q. So you knew what had happened?
  21   A. In general terms, yes.
  22   Q. What did you understand at that stage to be the position
  23     about the numbers of hearts that might be kept by the
  24     Trust?
  25   A. I do not think I had really formed a view on that at
0044
   1     that stage. I knew that there were a number of retained
   2     hearts and other organs from my discussions with
   3     Professor Berry and Mr Barrington about this particular
   4     issue. I do not think at that stage I had any feeling
   5     for the number, although I am pretty sure I understood
   6     it was not just one or two.
   7   Q. If we go to UBHT 308/11, 3rd June 1996:
   8        "I received a telephone call from the mother of
   9     a child who had died while in open heart surgery --
  10   THE CHAIRMAN: Mr Langstaff, I am holding it back for the
  11     moment while one looks at it very carefully. (Pause).
  12   MR LANGSTAFF: I am grateful. Can we scroll down to the
  13     bottom of the page to make sure it is okay? (Pause).
  14        I think we will concentrate just on the top of the
  15     page. That is the portion.
  16   THE CHAIRMAN: I may say, my intervention is not to do
  17     with withholding information but checking the
  18     confidentiality of all the material that appears in
  19     public.
  20   MR LANGSTAFF: Sir, yes. As will be apparent from the
  21     black markings on a number of these documents, they are
  22     put there quite deliberately in order to protect
  23     confidentiality in proper cases.
  24        Could you read through the item on 3rd June,
  25     please, to yourself?
0045
   1   A. Can I just ask whose file note it is?
   2   Q. I think it is Professor Berry's. I may be wrong.
   3     (After conferring): It is Ian Barrington, I am told.
   4     (Pause).
   5   A. Okay.
   6   Q. The position, if it is accurately recorded, which
   7     presumably it is, is that the Dispatches programme
   8     excited a certain amount of interest?
   9   A. Yes, it is fair to say that, yes.
  10   Q. For confidentiality reasons I am not going to ask you
  11     the question I was originally going to ask you about
  12     this particular note, but can I put it generally: did it
  13     emerge that at least one other parent was in contact
  14     with the Trust asking if there were any retained tissue
  15     from his or her child?
  16   A. Yes, that is correct. We had a conversation, more than
  17     one conversation, I suspect, about what we should
  18     actually do in the light of the approaches that we were
  19     now receiving, and we decided there was no sensible or
  20     viable way that we could contact all of the parents,
  21     potentially who would be affected by this. We decided
  22     that the best policy was to respond as quickly and as
  23     sensitively as we could to any specific requests that we
  24     had, but that we would not seek out parents to tell them
  25     about the situation. Hopefully, that is clear in my
0046
   1     statement. So there were in fact more than -- I think
   2     there were probably several, three or four parents or
   3     individuals who came forward in the months following
   4     the issue in I think February 1996.
   5   Q. What was the reason that the Trust did not say publicly,
   6     "We have a lot of retained hearts"?
   7   A. I think our prime concern was the distress that it
   8     would cause to parents concerned, bearing in mind that
   9     the first public report from the Trust about what had
  10     happened in the past in paediatric cardiac surgery had
  11     only been published a few weeks before this and the
  12     reverberations of that were huge and were continuing
  13     very strongly at that time.
  14        We felt, and felt for some considerable time after
  15     that, that to seek out parents who were understandably
  16     extremely distressed, in many cases, at a reawakening of
  17     deep and painful memories would be entirely the wrong
  18     thing to do, and therefore we should be passive in one
  19     sense about it, but obviously very quick, ready and open
  20     and sensitive to respond if people approached us.
  21   Q. Forgive me for asking what is perhaps a difficult
  22     question, but you were here not wishing to disturb
  23     people because of the sensitivity of the issue and the
  24     distress which it might cause. If you are right in
  25     believing, as you do, that every consent that was needed
0047
   1     to keep tissue had been obtained and if the policy was,
   2     as Professor Berry had described it, expecting the
   3     clinician in each case to explain the conduct of the
   4     postmortem and the retention of tissue, then presumably
   5     every parent of every child from whom there may have
   6     been a kept heart would at least have been asked about
   7     it in advance, would have known that the tissue might be
   8     retained and have agreed to it. Why should they be
   9     particularly distressed by finding out now that that had
  10     happened?
  11   A. You have mixed in your question things I know now and
  12     things I knew then. At the time it was my understanding
  13     that nothing improper had been done in terms of
  14     legality; it was my understanding, as I said in my
  15     statement, that a number of the parents would not be
  16     aware that tissues had been retained, either because
  17     they had not been told, although nothing illegal had
  18     been done, or because they had been told and quite
  19     understandably, with everything else that was going on,
  20     or they had given consent perhaps in a hospital
  21     postmortem and they no longer remembered that that was
  22     the case. So our view, my view and our view, was that
  23     to raise the issue at a time like this, knowing full
  24     well how difficult it would be to get the information to
  25     all the parents concerned -- they had maybe moved on
0048
   1     more than one occasion and were hard to contact -- would
   2     be a very distressing and difficult exercise for the
   3     parents.
   4        Therefore the issue was now in the public domain.
   5     There was no doubt that the issue would be raised again
   6     in the General Medical Council hearings that were
   7     becoming increasingly certain, and it was really
   8     thinking about the parents' feelings and whether they
   9     would wish to be approached by the Trust in these
  10     circumstances that guided us. We made the decision that
  11     many parents, as in fact has been proved by subsequent
  12     events, would not wish to know about it and would not
  13     necessarily wish to pursue it with us. Therefore to
  14     raise it with them would be wrong.
  15   Q. Going back to the start of your answer to me: why was it
  16     that at the time you thought a number of parents might
  17     not have been told?
  18   A. Because as I said in my statement, I knew that what
  19     I have described as "informed consent", my belief is
  20     that that would not have been in place on all occasions,
  21     and although parents would have signed a form and given
  22     permission for the retention of organs in the case of
  23     a hospital postmortem, it might not have been explained
  24     to them quite fully what that entailed. In the case of
  25     a Coroner's postmortem, I thought it less likely perhaps
0049
   1     that there had been an informed discussion. Therefore
   2     I thought many of the parents, although nothing illegal
   3     had been done, would not be aware of the fact of
   4     retention of organs, as in fact subsequently proved to
   5     be the case.
   6   Q. So you thought then that would be the case. Has your
   7     view as to that changed at all?
   8   A. No. I think that subsequent events have shown that
   9     for a variety of reasons, many parents did not
  10     understand and appreciate that organs had been retained
  11     and, indeed, some parents who were aware of it at the
  12     time had subsequently forgotten it and, even though
  13     there were discussions at the time, had not realised as
  14     time had gone on, perhaps it had not sunk in or they had
  15     not taken it in or whatever -- I do not mean to imply
  16     any criticism at all, of course -- there was some
  17     understanding and that became clear.
  18   Q. You are not suggesting any fault on the part of the
  19     parent?
  20   A. None whatsoever.
  21   Q. One category is parents who had never been told and
  22     never knew; or the second category, parents who had been
  23     told in such a way or at the time, or in circumstances
  24     of unhappiness or distress that they had not taken it
  25     in?
0050
   1   A. Thank you, that is a good summary.
   2   Q. There is a third position, is there, of parents who,
   3     if they had been told, and told in the way in which you
   4     advocate, the moral way of informing a parent, might
   5     have understood that the heart would be used or retained
   6     for a period of time for the purposes of research, for
   7     the purposes of teaching, or, for that matter, to
   8     establish the cause of death, but might not perhaps have
   9     appreciated that their child's heart would have been
  10     kept for 8, 10, 12 or 15 years and could still be found
  11     preserved within the Trust?
  12        In other words, people who, although they might
  13     have known it was going to be retained, would have
  14     naturally understood that it would only be for a short
  15     period?
  16   A. Yes, certainly. There is a category of parents also who
  17     have made it clear to me, yes, they did understand about
  18     the retention, they did understand why and they did give
  19     fully informed consent for that.
  20        Whether the length of retention was discussed with
  21     those parents is not something I have asked them, but
  22     I think it is perhaps reasonable to assume that they
  23     might not have expected the length of keeping of tissue
  24     and so on that you refer to.
  25   Q. Again, is this something upon which you, from your
0051
   1     present perspective, would welcome guidelines and
   2     advice?
   3   A. Yes. I think it would be helpful, and I am sure it
   4     is something that the Royal College of Pathologists will
   5     address. I am told by my pathology colleagues that the
   6     rarity of certain conditions is such that retention for
   7     lengthy periods of time may be necessary for comparative
   8     studies to be made, but I would not want to go further
   9     than that. It would be outside my specific knowledge if
  10     I did.
  11   Q. We dealt with the way in which you first of all looked
  12     at the question of telling others of the scale of the
  13     retention of hearts.
  14        Can we have a look, please, next at UBHT 307/58?
  15        This form I think was produced at a later stage to
  16     ask for information about the retention of the heart.
  17     You have described some of the process in the statements
  18     you have given. Can I ask you to take a look, please,
  19     next at UBHT 309/40, which is the start of the document,
  20     page 41 I am going to take you to, but let us identify
  21     the document first. It is a letter to you of
  22     18th August 1998, and can we go over, please?
  23   THE CHAIRMAN: I think lower down in the letter.
  24   MR LANGSTAFF: Can we scroll lower down, please? If we
  25     scroll back up, if we could have the bottom of
0052
   1     paragraph 4 at the bottom of the page, please, what we
   2     see here is a letter to you about the concern of
   3     a number of parents in August 1998, and suggestions as
   4     to arranging meetings with a cardiac counsellor and
   5     impartial cardiologist. Then point 5 I think begins to
   6     talk about operations Mr Wisheart and Mr Dhasmana were
   7     concerned with, and it goes on I think to deal with the
   8     question of identity of some people who had lost
   9     children whose hearts had been retained, and made the
  10     suggestion that Professor Berry had taken hearts without
  11     permission to do so.
  12        That letter in August 1998 came at a time after
  13     this Inquiry had been announced but before it had first
  14     sat, so your thoughts, no doubt, were turned towards the
  15     Inquiry and towards the future?
  16   A. Yes, although of course there have been many issues
  17     associated with this which have been running
  18     concurrently. Certainly this letter, we had had a first
  19     meeting I think with the Action Group, I think it was in
  20     June of that year and from that, a sequence of meetings
  21     and correspondence and points and so on were raised by
  22     the Action Group and this is one of those letters
  23     raising a number of issues that I was attempting to
  24     respond to as best I could.
  25   Q. You will have seen that it will be said in evidence by
0053
   1     Mrs Michaela Willis that at this stage, so far as the
   2     Action Group were concerned, they knew only of two cases
   3     definitely where hearts had actually been retained.
   4        What was your idea, in August 1988, of the scope
   5     of the numbers of retained hearts?
   6   A. I do not think the scope of my knowledge then was any
   7     greater than it had been in 1996.
   8   Q. So you knew it was more than two, you knew it was
   9     several?
  10   A. I knew it to be a substantial number and we were still
  11     pursuing the policy that I outlined that we adopted in
  12     the early part of 1996. Then the Action Group, through
  13     Mrs Willis, said that they wished to advance the issue
  14     because of a number of parents raising it with them, and
  15     we then set out together to try and find ways in which
  16     we could take it forward.
  17   Q. By November of 1998, did you have an idea that there
  18     may be something like 200 hearts retained?
  19   A. That is right, following the meeting and the specific
  20     raising of this issue by the Action Group. We set in
  21     hand the work to identify -- which was no easy matter,
  22     given that we wanted to be as precise as possible -- the
  23     actual number of retained hearts and other organs, and
  24     by November, that is correct, I knew that the number was
  25     in the order of 180, I think, was the state of my
0054
   1     knowledge by the middle of November 1998.
   2   Q. If we have a look at UBHT 309/169, this jumps forward
   3     to February, but the reason I do that is to give
   4     a perspective of what is happening between August 1998
   5     and February 1999. This is a letter to you from the
   6     Heart Action Group and it expresses concern at the
   7     information and says:
   8        "We have attempted to work with you to lessen the
   9     impact of the information especially on those people who
  10     are members of our group."
  11        Indeed you pay tribute to the members of the Heart
  12     Action Group in the last paragraph of your statement and
  13     the support and help each of you had from the other.
  14   A. Yes.
  15   Q. There are however unhappinesses expressed in the second
  16     paragraph:
  17        "I am unhappy at the way the further facts keep
  18     appearing, such as the revelation that not only hearts
  19     but brains and lungs have been removed. It is our
  20     opinion that it would have been far better if the Trust
  21     had been totally open with us from the start and implied
  22     both the number and size of the problem."
  23        I think two points are being made. One is the
  24     nature of the tissue, the fact that it may not just have
  25     been hearts but also brains and lungs, and secondly, the
0055
   1     question of the scale of it, the number of it.
   2        When was it that you first indicated, as you
   3     recollect it, to anyone in the Action Group what the
   4     overall scale of the problem was as you saw it?
   5   A. I think it was early in February 1999.
   6   Q. You knew, you told us, in November 1998, the approximate
   7     size of the problem?
   8   A. Yes.
   9   Q. Why was it that you did not tell anyone in the Action
  10     Group then, since you were then working with them to
  11     a resolution of the sensitivities necessarily involved
  12     in an issue like this?
  13   A. A number of reasons. Firstly, we were aware that the
  14     Trust had been told that nothing that could be of use to
  15     the Inquiry in terms of evidence must in any way be
  16     released or disposed of, and I was conscious that it was
  17     possible that the material retained from postmortems
  18     might fall and probably would fall within that category,
  19     and I knew that if I told the Heart Action Group at that
  20     time what the number of requests was, the Trust would
  21     have been in a position not perhaps to fulfil that which
  22     we wanted to do, which was to return such material to
  23     the parents if that was their wish. I could foresee
  24     a situation whereby we were on the receiving end of
  25     many, many requests for return of organs that we were
0056
   1     not in a position to oblige.
   2        So that was an important issue.
   3        The advice I received from the Inquiry, having
   4     told them of the scale of the problem in November 1998,
   5     was that the Inquiry team themselves had no reservations
   6     about the return of this material, but that the
   7     permission of every other group involved would be
   8     required. That permission took many weeks to obtain,
   9     and in some cases, a good deal of pressure to obtain
  10     before we finally knew, late in January, that all of the
  11     parties concerned had no objection. That was one reason
  12     why I did not tell the Action Group the scale of the
  13     problem when I became aware of it in November 1998.
  14        Another reason was that although we had better
  15     information all the time, our information was not at
  16     that time sufficiently complete for us to be able to
  17     answer all of the questions that would have been raised
  18     by all of the parents potentially, and I thought it
  19     would reflect very badly on our joint efforts if, having
  20     informed parents of the situation, we were then unable
  21     to answer the questions that they raised with any degree
  22     of certainty and a further period of checking and
  23     cross-checking of something in the order of 2,800
  24     pathology records was required before we could be
  25     definitive about what we could tell people.
0057
   1        Those were the two main reasons why, in November,
   2     although I shared the information with the Inquiry team,
   3     I did not think it appropriate to share it with the
   4     Action Group.
   5   Q. Two questions in respect of that: so far as the Action
   6     Group were concerned in November 1998, your
   7     understanding was, was it, that they had not told their
   8     membership that there were a vast number, or even
   9     a large number of retained hearts as such, but were
  10     working with you towards a sensitive approach to the
  11     problem?
  12   A. That is correct. The initial approach of the group
  13     was that we should make the matter relatively public,
  14     and write to all of their members to tell them this may
  15     be the case. I did not think that was appropriate,
  16     partly because the Action Group did not represent all
  17     the parents concerned and partly because as I say I did
  18     not think we had the right sort of information available
  19     to be precise in what we said.
  20        So we continued to work with them in a very
  21     constructive way through those months to try and make
  22     sure we got ourselves to the point at which we could be
  23     quite sure we could answer all the questions that were
  24     raised and could be quite correct on the information
  25     that we gave.
0058
   1   Q. The ultimate discovery of the scale of the problem
   2     plainly, it appears, from the 24th February letter, has
   3     caused some distress?
   4   A. Yes.
   5   Q. What you have said in relation to the difficulties of
   6     dealing as it were with parental enquiries presuppose
   7     that the parents making enquiries would have known
   8     themselves some idea of the scale of the number of
   9     retained hearts.
  10        Why is it, just pressing a little, that you felt
  11     the need, it may be said, to keep the executive of the
  12     Heart Action Group "in the dark" as to the numbers?
  13   A. I think I felt that once I told anyone from the Heart
  14     Action Group the scale of the problem, any chance that
  15     we had of managing it in the way that I wished it to be
  16     managed, which was with the maximum sensitivity, and the
  17     maximum correctness of information to parents, would be
  18     prejudiced if I did it too early. We worked very well
  19     and very constructively with the Action Group and they
  20     were extremely helpful to us through a long series of
  21     discussions about how we might handle this problem, but
  22     I genuinely felt that I wanted to establish the
  23     principles of how we did it and be quite clear that we
  24     were in a position to do what we set out to do before
  25     I mentioned the scale of it. And the question of the
0059
   1     answer implies that this was something that I pondered
   2     over and then made a decision not to do. In fact, the
   3     first time I was ever asked the question by the Heart
   4     Action Group as to the numbers was in February 1999 and
   5     I gave that information as soon as it was requested.
   6   Q. So is what you are saying to me that you did not trust
   7     the executive of the Action Group to be as sensitive as
   8     you would be in respect of breaking the news to
   9     parents?
  10   A. No, I am not saying that.
  11   Q. Because what you have said, in effect, is you wanted
  12     to handle matters sensitively in your own way --
  13   A. I wanted to handle the matter in the way that had been
  14     agreed between ourselves and the Heart Action Group,
  15     which was to make sure we only approached those parents
  16     through the Heart Action Group who wished to be
  17     approached. We devised with us a mechanism, as far back
  18     as November, as to how that could actually be done.
  19        We then worked on all the documents, and drafts of
  20     letters went to and fro in order to identify our way
  21     forward that would meet the Action Group's requirements
  22     and requests that every parent who wished to know would
  23     have the opportunity to know the full facts, and the
  24     Trust's obligations as I saw them were that we did not
  25     prejudice the confidentiality of any individual patient
0060
   1     and were in touch with people who wanted to know, and
   2     were able to give all the people the information they
   3     wanted when they wanted it, which was not the case until
   4     February 1999.
   5        So my judgment was that I needed to establish, as
   6     I say, those principles and the exact modus operandi we
   7     were going to use before we got into the debate about
   8     the numbers.
   9   Q. What was it that changed the position between November
  10     1998 when you knew there were something like 180 to 200
  11     cases involved and February 1999 when, again, you had no
  12     great certainty about the exact numbers?
  13   A. By February the state of our knowledge was much better
  14     and we agreed that the time was now ready to start and
  15     if my memory serves me correctly, on February 4th we
  16     agreed to go forward along the lines we had discussed.
  17     At that meeting the number of hearts was discussed and
  18     we agreed to go forward. I had a telephone call the
  19     following day from -- I forget whether it was the Action
  20     Group or a representative of the Action Group, saying
  21     that they felt the time was now appropriate to place the
  22     issue in the public domain and they were going to make
  23     a press release about the issue.
  24   Q. So was it the fact that it was going to be placed in the
  25     public domain that brought the numbers to light, or had
0061
   1     you mentioned it beforehand?
   2   A. No, I had mentioned it before. We were told the
   3     following day they were going to make a press release
   4     about it.
   5   Q. So the gap between November and February is explained by
   6     your getting increasing knowledge of the exact cases, is
   7     it?
   8   A. Yes, and a good deal of detailed work with the Action
   9     Group on drafts of letters to be sent to parents
  10     identifying the way we could make sure that only those
  11     parents who wished to have information could receive
  12     information, us thinking about how we would handle the
  13     requests when they came in, and really wanting to get to
  14     the point at which we could say it was time to start.
  15     It was at the meeting of 4th February that we finally
  16     agreed the way forward. Our intention was then the
  17     following week to get the whole process rolling.
  18   Q. Between November and February you and the Action Group
  19     were busy drafting and agreeing letters, were you?
  20   A. Yes, there were a number of drafts.
  21   Q. -- which had not therefore been sent. They were in
  22     draft, being formulated?
  23   A. That is right. We wanted the Action Group's advice as
  24     to how we could phrase the letters in such a way as
  25     would minimise distress and be as sensitive as possible.
0062
   1   Q. So you knew that the Action Group were aware of the
   2     problem, were handling it sensitively and
   3     co-operatively?
   4   A. Yes.
   5   Q. That although these letters were in draft, none had been
   6     sent and indeed, parents represented by the Action Group
   7     might not have known that their own child was, or
   8     potentially was, a child in respect of whom tissue had
   9     been retained?
  10   A. That is possible, yes, that is right.
  11   Q. So the question which appears suggested by the letter of
  12     24th February 1999 is that if the executive could be
  13     trusted to help to formulate letters before they were
  14     sent to make sure that the policy was in place, the
  15     matters were handled sensitively, why could they not be
  16     trusted with the knowledge that there were probably
  17     about 200 cases, even although later on it may become
  18     clear that there were 179?
  19   A. I think I can only say that I had to make a judgment
  20     about what order in which best to do things to try and
  21     reach the right result, which I have described had to be
  22     the sensitive release of appropriate and correct
  23     information to the people who wished to have it. My
  24     judgment was that if we could do as much work as
  25     possible to establish the principles and the ground
0063
   1     rules with which we worked, protect confidentiality of
   2     patients and parents to make sure we did not approach
   3     people who did not wish to be approached, then all of
   4     that work was best done without the scale of the
   5     retention, which I knew would come as a surprise to the
   6     parents. Without that being there -- because I think
   7     I feared that our attempts to reach a joint solution and
   8     a way through might well be compromised by that
   9     information, as indeed happened partially at least to be
  10     the case.
  11   Q. Was there to any extent a personal reaction by you, as
  12     a human being, to the size and scale of the problem?
  13   A. Yes. I was surprised.
  14   Q. So you were alarmed by it, were you?
  15   A. I would say "surprised".
  16   Q. And you are telling us that you expected others to
  17     share, inevitably, that surprise?
  18   A. Yes.
  19   Q. Can we have a look at page 309/78?  This is a note of
  20     the meeting with the Heart Action Group of 4th February,
  21     the meeting that we have had the date of.
  22   THE CHAIRMAN: Do we have permission for those names to
  23     be --
  24   MR LANGSTAFF: If you will just give me one moment.
  25     (After conferring): Yes.
0064
   1   THE CHAIRMAN: I am grateful, thank you.
   2   MR LANGSTAFF: The minute says "Agreed Way Forward".
   3     Let us scroll down. Two individuals were to contact
   4     parents to explain that "over the years, hearts and
   5     other body tissue were sometimes retained".
   6        In the left-hand margin there is a note. Whose
   7     writing is that?
   8   A. It is mine.
   9   Q. It is probably easy for me to read but it may not be
  10     so easy on the public screens. Would you read it out?
  11   A. It was a note made on the evening of 5th February 1989.
  12     It says:
  13        "Subsequently changed. Instead, BHCAG will supply
  14     a list of parents and ask us to confirm those with no
  15     retention", i.e. that no material had been
  16     retained, "then write to them. Letters to material
  17     retained will follow ASAP".
  18   Q. So the process had actually changed from being one of
  19     parents being told there might be a position where part
  20     of their child was being kept by the Trust, and they
  21     would have to write to find out if that was the case, to
  22     your actually telling the Heart Action Group in respect
  23     of a list of parents they submitted whether there was
  24     anyone who did not have a heart retained?
  25   A. That is right. We agreed the text there on 4th February
0065
   1     and we had a telephone conversation the following day,
   2     where the Action Group told us they wished to do it in
   3     the way outlined there on the left.
   4   Q. On that same day, 4th February -- can we look at
   5      307/88? Perhaps if we go back to the page before, just
   6     to put it in context, and over again, please -- back to
   7     88.
   8   THE CHAIRMAN: Mr Langstaff, others did not see that
   9     because I was checking it. Do you want to go through it
  10     again?
  11   MR LANGSTAFF: I want to go through this, just checking
  12     it first. Can we go to the bottom of the page. There
  13     is nothing in the top half. It is fine.
  14   THE CHAIRMAN: Do you want to go back to the other
  15     page to put it in context?
  16   MR LANGSTAFF: No, it is all right.
  17        Again, can you help with the writing on this,
  18     Mr Ross?
  19   A. No, I am afraid I cannot. What is the document?
  20   Q. It is a document which comes from Professor Berry's
  21     papers. Can we scroll down?
  22   A. It looks like it is a briefing put together to try
  23     and assist in some kind of public statement on the
  24     issues, but I do not know whose writing that is.
  25   Q. It became apparent that not only hearts but also
0066
   1     lungs and on occasion brains were being retained.
   2        When was that information given to the parents?
   3   A. It must have been in February 1999.
   4   Q. And again, I have shown you the letter of
   5     24th February. Plainly the information had come through
   6     by then. So again, something which was likely to come
   7     as a hammer blow to many, no doubt?
   8   A. Yes, indeed.
   9   Q. Had you thought to indicate beforehand that that
  10     might possibly be the case, to prepare members of the
  11     executive for the revelation that it was the case?
  12   A. I think I found out myself relatively late in the day.
  13     Perhaps I should have asked some harder questions myself
  14     about the exact content of the retained material but it
  15     was only relatively late that I found out myself the
  16     material was not only limited to hearts.
  17   Q. Who told you?
  18   A. It was either Professor Berry or Mr Barrington.
  19     I do not recall which one it was. The information would
  20     have come from Professor Berry, even if it was via
  21     Mr Barrington.
  22   Q. Earlier on you may remember about five or ten minutes
  23     ago I was asking you why it was that the representatives
  24     of a number of the parents had not been told what the
  25     scale of the problem was.
0067
   1        One of the reasons you gave was this Inquiry
   2     might itself require the retention of tissue, and you
   3     said that the Inquiry had written to you and had said,
   4     "Well, we do not, but you had better make sure that
   5     other people do".
   6        Can we have a look, please, at the letter just so
   7     that the record is straight? It is UBHT 309/60.
   8        If we go to the bottom of the page, there is no
   9     problem of confidentiality on this one: it is signed by
  10     the Secretary to the Inquiry and it is addressed, at the
  11     top of the page, to you.
  12        It records how it is in response to a letter of
  13     23rd November saying that the Trust would be willing to
  14     release retained hearts to parents and to seek this
  15     Inquiry's views on the proper course of action.
  16        The second paragraph:
  17        "Section 84 of the NHS Act ... pursuant to which
  18     the Inquiry is set up does not give the Inquiry any
  19     jurisdiction over the retained hearts. As
  20     a consequence, it is the Trust's responsibility to
  21     decide on an appropriate course of action regarding the
  22     hearts."
  23        That is clear, is it not, as a statement of what
  24     the position was so far as the Inquiry was concerned?
  25   A. It is. I think I had in mind also, when I wrote the
0068
   1     letter, that the then Chairman had received a personal
   2     letter from the Secretary of State which spelled out
   3     very clearly that absolutely no item that could be of
   4     use to the Inquiry, whatever it was, should be disposed
   5     of.
   6   Q. That, I think, was a reference to evidence?
   7   A. Correct.
   8   Q. That came at the very beginning of the Inquiry process,
   9     did it not?
  10   A. Quite some time ago now, yes.
  11   Q. Here was the Inquiry saying, "Well, leave aside
  12     evidence, so far as the hearts are concerned, we do not
  13     have any jurisdiction over it" and setting it out
  14     absolutely clearly in the second paragraph.
  15   A. Yes.
  16   Q. What you had in mind in saying the Inquiry had said you
  17     must ask other people first, if you have a look in the
  18     third paragraph, the Inquiry makes observations, so
  19     plainly these are observations:
  20        "We understand and are in sympathy with the desire
  21     of the parents to obtain the hearts and of the Trust to
  22     return them. However, we would wish to be inclusive in
  23     the sense of the Inquiry considering any material which
  24     those taking part feel it is relevant to the Inquiry to
  25     consider. Before returning the hearts therefore, the
0069
   1     Trust may wish to make appropriate enquiries of all
   2     those others who are affected by the Inquiry or by any
   3     civil litigation in relation to the deaths of the
   4     children concerned so as to obtain their views."
   5        It expresses a hope as to what their actions may
   6     be.
   7        Your earlier answer, I think, must be modified,
   8     must it not, along these lines -- tell me if you think
   9     I have got it wrong: the Inquiry had said "The question
  10     of retention or otherwise is not within our
  11     jurisdiction; it is a matter for the Trust"?
  12   A. Yes.
  13   Q. Everything else is merely advice, is it not?
  14   A. Yes, albeit coming from the Inquiry itself. It is
  15     advice that you would not ignore.
  16   Q. It leaves the ultimate decision up to the Trust, no
  17     doubt having considered what other people may have to
  18     say to the Trust about the retention of tissues?
  19   A. Yes.
  20   Q. I think it is fair to say you got a letter from
  21     solicitors in London which, for a while at any rate,
  22     wished to retain hearts because they might be used as
  23     evidence?
  24   A. We approached through our own legal advisers quite
  25     a substantial number of legal representatives who were
0070
   1     involved, various bodies and so on, and some had
   2     immediately made no objection. Others had objected for
   3     quite some time. I remember passing the name of one
   4     individual who was being "obstructive", in inverted
   5     commas, to the Heart Action Group so they could apply
   6     pressure to assist us to resolve the situation.
   7   Q. Did they do so?
   8   A. I do not know, but I suspect they did.
   9   Q. The situation was resolved, was it?
  10   A. It was.
  11   Q. The statement of Mrs Willis, if you just give me
  12     a moment, do you seek to criticise the executive of the
  13     Bristol Heart Children's Action Group for what you
  14     consider to be precipitate disclosure of information as
  15     to the number of hearts and the retention of other parts
  16     of the body?
  17   A. If I can just refer to my statement ...
  18   Q. It is paragraph 17. Perhaps we can have it on the
  19     screen. It is scanned in at WIT 221/8. The foot of the
  20     page.
  21   A. No, I have no criticism whatsoever to make of the
  22     executive of the BHCAG on this issue so my words in my
  23     own statement were chosen very carefully indeed and
  24     I said I had concerns about this disclosure of
  25     information because it meant that for a substantial
0071
   1     number of parents the first they would find out would be
   2     through the media, and even though I knew that the
   3     Action Group themselves would be able, I am sure, to get
   4     information to all of their members, there would be
   5     a substantial number of other parents who would only
   6     find out through the media. Given that we had worked so
   7     long to try and avoid that type of situation occurring,
   8     I was very concerned. But I entirely recognised their
   9     right to make whatever statement they said they saw fit,
  10     and I would not criticise them for that at all.
  11   Q. Can we go overleaf? The fourth line down:
  12        "The Trust and its managers deliberately withheld
  13     the scale of the retention of the children's hearts for
  14     over 10 weeks."
  15        You have told us that is actually accurate because
  16     there was a deliberate decision by you not to reveal the
  17     scale of it?
  18   A. That is correct.
  19   Q. She goes on:
  20        "This led to the press being aware of the story by
  21     a Trust leak and caused the events which I have
  22     described."
  23        Did the press become aware of the scale by a trust
  24     leak?
  25   A. Not to my knowledge, no. The number of people who were
0072
   1     actually engaged with the process within the Trust was
   2     very small and I would trust them to maintain
   3     confidentiality on such an important issue, so I have no
   4     knowledge of any such leak.
   5   Q. The last sentence of that paragraph argues that the
   6     Trust is paying lip-service to the need to give parents
   7     full information and not in fact doing so.
   8        Do you accept that as a criticism of the way the
   9     Trust behaved over this particular issue?
  10   A. No, I do not, actually. I think I could point to many
  11     examples and many documents in which the Action Group
  12     and other representatives of parents have congratulated
  13     the Trust on the way it has handled many difficult
  14     issues in recent years, and the regular meetings we have
  15     had and the way we have covered, between us, so many
  16     problems and resolved so many problems I think shows
  17     that the Trust has earned the compliments that it has
  18     received on many occasions from the parents and their
  19     representatives for doing things very differently from
  20     the way they were done in the past.
  21        I think to draw a general conclusion like that
  22     from the specific issue of the scale of retention is
  23     harsh to the Trust. I was particularly disappointed, as
  24     you would expect, to see that part of the statement.
  25   Q. To what extent do you think that parents or patients
0073
   1     should be given full and frank information about
   2     anything which relates to their or their children's
   3     hospital treatment?
   4   A. I think individual parents should receive whatever
   5     information they request and that of course had been the
   6     Trust's stance on this particular issue since 1996 when
   7     Professor Berry said to the media that it was common for
   8     organs to be retained following postmortems.
   9        In terms of giving information on a general basis,
  10     though, it raises far more difficult issues. I hope
  11     I have managed to get across just what a complex issue
  12     it was to try and resolve in a way that was fair and
  13     proper to all concerned.
  14        Throughout this period, if any individual parents
  15     had approached us about their personal situation, and
  16     indeed, some of the parents did during these
  17     discussions, then we would immediately try and give them
  18     whatever help and advice and information that we could.
  19   Q. At the start of paragraph 18:
  20        "Finally, I want to say that the Trust asked me to
  21     withhold information about retention from BHCAG
  22     members. I was not prepared to do this."
  23        Is she right?
  24   A. Without having had the opportunity to discuss this with
  25     Mrs Willis to see precisely what she is saying, I do not
0074
   1     know. I cannot understand what it refers to. I cannot
   2     imagine that Mrs Willis would in any case take any
   3     notice of a request like that from the Trust, because
   4     she would do what she felt was the proper and the right
   5     thing to do, but I cannot recall any occasion where we
   6     asked her to withhold information. I can only think
   7     what she is referring to, we suggested that
   8     notwithstanding the fact of the scale of retention was
   9     now known, that we still try and put in place the
  10     mechanism we have agreed, and I expect that is what she
  11     is referring to. I basically wanted to buy a bit more
  12     time to handle the issue in the way we agreed. It may
  13     be that she refers to that.
  14   Q. We have the position on February 4th that you knew
  15     before the meeting the scale of the problem; nobody else
  16     did. It had not leaked?
  17   A. Not to my knowledge.
  18   Q. At the meeting, you tell us, you told the
  19     representatives of the parents and the Heart Action
  20     Group of the scale of the problem?
  21   A. Yes.
  22   Q. And they appreciated that for the first time.
  23   A. Yes. Although I do reiterate that it had been certainly
  24     in the public domain for some time that it was common
  25     practice to retain organs and other tissue after
0075
   1     postmortems and it had been referred to during the GMC
   2     as well, but I fully accept that the connection between
   3     that and the precise numbers and scale would not have
   4     been made by the parents necessarily.
   5   Q. The point you are making, it would not have been just
   6     one or two hearts, but on the other hand, the exact
   7     scale was not known?
   8   A. That is right.
   9   Q. When you appreciated -- because you told us you did --
  10     the revelation of the scope and scale, it would have
  11     come as a shock to many people?
  12   A. Yes.
  13   Q. Does it follow that you were hoping to discuss with the
  14     Heart Action Group ways and means of handling the
  15     revelation of that knowledge so far as parents were
  16     concerned?
  17   A. I hoped that notwithstanding them now knowing the scale,
  18     we could still put in place the plans that we had been
  19     working on together over a number of months and I was
  20     also conscious at this stage, as the Bristol Surgeons'
  21     Support Group increased their activities and I became
  22     more aware of their views, I was also conscious that
  23     I had to try and give them time also to make contact
  24     with the members of their group who might be affected by
  25     this situation.
0076
   1        So, notwithstanding the fact that the Action Group
   2     now knew the scale of retention, I wanted to try, as
   3     I say, to find a bit more time if possible in order to
   4     set in motion what we had agreed, although I knew
   5     inevitably it would become more public at some stage.
   6   Q. So it would be fair to say that in that meeting you were
   7     seeking to persuade those at the meeting to allow for
   8     a staged process of revelation of the scale of the
   9     problem?
  10   A. I wanted still -- perhaps with hindsight it was too
  11     optimistic of me, but I wanted still to try and handle
  12     it on an individual, sensitive basis with each family,
  13     giving them information if they wanted it and not giving
  14     them information if they did not want it. That is what
  15     I still hoped to try and bring about.
  16   Q. She can speak to it herself, but if what Mrs Willis
  17     means, paragraph 18, is that at that meeting you were
  18     asking her to agree to parents generally, the parents
  19     she represented amongst them, not knowing of the full
  20     scale of the problem immediately, but learning of it
  21     only over time, then what she says would be accurate,
  22     would it? Does it follow?
  23   A. Yes. I mean, that is the only explanation I can think
  24     of for that sentence.
  25   Q. If that is the understanding to be gained from that
0077
   1     sentence, then leave aside for the moment any question
   2     of justification, but is that withholding information at
   3     least for a period of time as opposed to being, as it
   4     were, full, frank and up-front with it at that
   5     particular moment?
   6   A. I am sorry, I do not quite understand.
   7   Q. Withholding information is withholding information.
   8     Delaying information is withholding information, is it
   9     not?
  10   A. Yes.
  11   Q. If you were delaying information, that is withholding
  12     information, leaving aside whether it is for good or bad
  13     reason --
  14   A. Yes.
  15   Q. -- you were saying "This is what I was doing for good
  16     reasons", and the reasons are those you have given?
  17   A. Yes.
  18   MR LANGSTAFF: Mr Ross, sir, may we now perhaps take
  19     a break?
  20   THE CHAIRMAN: Yes. Shall we say until 2 o'clock? Thank
  21     you.
  22   (1.23 pm)
  23            (Adjourned until 2.00 pm)
  24   (2.00 pm)
  25   MR LANGSTAFF: Just before we had the break for lunch,
0078
   1     Mr Ross, I was asking you to comment upon parts of the
   2     statement which Michaela Willis had given to the
   3     Inquiry.
   4        Can we have a look, please, at WIT 221/1.
   5        There is one other matter I should raise, at the
   6     very bottom of this page. What she says is that during
   7     the dialogue she had with you, and specifically since
   8     October 1998, she raised the question of retained hearts
   9     on a number of occasions.
  10        Pausing there, that presumably would be right,
  11     would it?
  12   A. From August 1998 onwards, yes.
  13   Q. She says:
  14        "I was seeking reassurance from Mr Ross that the
  15     cases that we knew of were the only cases of their
  16     type. I was assured by", and there is a gap, "that the
  17     cases that we knew of were the only cases of their
  18     type. I was assured by Mr Ross that Professor Berry was
  19     undertaking extensive research to ascertain the correct
  20     position and we would be given the information as soon
  21     as possible."
  22        It may not be absolutely clear what is aimed at by
  23     that paragraph, but can I take it in stages.
  24        In fact were the two cases that she knew of the
  25     only cases of their type?
0079
   1   A. Well, no.
   2   Q. Unless, presumably, one defines "type" in some narrow
   3     way.
   4        Did you give any assurance that the cases were the
   5     only cases of their type?
   6   A. Well, no. The purpose of the discussions was to handle
   7     the issue of the retention of tissues and organs and
   8     that was the purpose of the series of meetings that we
   9     were holding. I do not recall the question arising. It
  10     was clear to me, and I thought to the Action Group, that
  11     there were more cases and that was the purpose of the
  12     discussions.
  13   Q. If we read, however, the sentence at the top of that
  14     page:
  15        "I was assured by Mr Ross that Professor Berry was
  16     undertaking extensive research to ascertain the correct
  17     position and we would be given the information as soon
  18     as possible."
  19        Is it right that you did assure her that Professor
  20     Berry was undertaking extensive research to ascertain
  21     the correct position?
  22   A. Yes.
  23   Q. So it may be the fact that there were only two people
  24     that you could identify at the stage you first began to
  25     talk to her; even though you knew there were other
0080
   1     cases, you did not know whose cases they were. Is that
   2     a possible reconciliation?
   3   A. No, I do not think so. There had been several cases of
   4     hearts being returned to parents at their request before
   5     August 1998, and I assumed that the Action Group were
   6     aware of those and as I say, clearly, there were more
   7     cases because that was the purpose of our discussions.
   8   Q. In any event, moving on from the Action Group to the
   9     Surgeons' Support Group, did you have contact with them
  10     too?
  11   A. Yes, but not until fairly late in the process.
  12   Q. Members of the Surgeons' Support Group, as we know,
  13     because we have heard evidence from some, have
  14     themselves lost children?
  15   A. Yes.
  16   Q. Did the Trust make any attempt to contact the Surgeons'
  17     Support Group in, let us say, August/September of last
  18     year, when it was known that there might be a problem
  19     over retained hearts?
  20   A. We had some contacts with the Surgeons' Support Group
  21     in around September 1998, but that was specifically on
  22     the issue of Mr Dhasmana's future employment in the
  23     Trust. I remember that they had made representations on
  24     his behalf at the time that the Trust was considering
  25     what his future employment position should be.
0081
   1        The next contact that I recall I had with them
   2     was in February when I made a telephone call to ask them
   3     to urgently discuss the situation with me in the light
   4     of the fact that I then knew that the matter would be in
   5     the media within a few days.
   6   Q. So there had been no discussions at all with the
   7     Surgeons' Support Group as to the question of any
   8     retained hearts. The first they would have known about
   9     it was when you phoned 24 hours or so before the news
  10     broke in February?
  11   A. No, because they were aware of the reports that had been
  12     in the media in 1996 and were aware of the general
  13     issue, and indeed, one of the leading members of the
  14     Surgeons' Support Group is one of the parents who had
  15     given consent for retention of organs personally in the
  16     past, in the belief that this would be helpful.
  17        So I was not in any doubt that they did not know
  18     about the issue. I knew that they knew about the issue,
  19     but I did not engage them in detailed discussions about
  20     the way forward and brief them on where we had got to
  21     with our discussions with the Action Group until the
  22     week commencing February 8th, I think it was -- 7th or
  23     8th.
  24   Q. Again, is there a reason why they were not approached by
  25     you but the Heart Action Group were?
0082
   1   A. Our dialogue with the Heart Action Group had been going
   2     on for a much longer period and I think constructive
   3     personal relationships and dialogue had been established
   4     for some time.
   5        It was not until relatively late in the day that
   6     I was aware that the Surgeons' Support Group contained,
   7     amongst its members, parents who might be affected by
   8     this particular issue. Perhaps that is my fault for not
   9     realising more quickly that they, too, had an interest
  10     in the issue, although clearly not of the same scale as
  11     the members of the Action Group.
  12        I think that is why I did not include them in the
  13     discussions quite as early as I might have done.
  14   Q. Can I now turn to a number of smaller points? The
  15     figure that we have of I think 179 retained organs: is
  16     that a figure which relates to hearts only, or does that
  17     figure include cases where lungs and brains may also
  18     have been retained?
  19   A. I think it would be more accurate to say 179 cases.
  20     Within that would be, as you suggest, both retentions of
  21     parts of organs only and quite limited material, to more
  22     extensive retention such as you have outlined.
  23   Q. The figure: do I take it that relates to the numbers
  24     from 1983 or 1984 onwards --
  25   A. The period covered by the Public Inquiry.
0083
   1   Q. Thank you, that is what I was trying to ask,
   2     inadequately.
   3        So before that, before the period of our terms of
   4     reference, there are more hearts?
   5   A. Indeed, yes.
   6   Q. And roughly the number?
   7   A. The number in total, including the period of the
   8     Inquiry, is something in the order of 300, I am told.
   9     Some of them are going as far back as the 1960s.
  10   Q. In each of the cases where there has been retention, we
  11     know from what you have told that you say the
  12     pathologist would not have carried out his postmortem
  13     without there being a form of consent, or something in
  14     writing which gave him authority?
  15   A. Yes.
  16   Q. Where was it practice, do you know, for those
  17     authorities to be stored?
  18   A. My knowledge on this issue comes only from what I have
  19     seen in Professor's Berry's statement to the Inquiry,
  20     which indicated that the forms were normally retained in
  21     pathology records but were sometimes within wider
  22     medical records, if my recollection serves me.
  23   Q. So sometimes in the patient's clinical records, but
  24     normally the pathology record as such?
  25   A. I would prefer not to be quite so specific, and say
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   1     they would be in either place, but I would not be sure
   2     about the proportions.
   3   Q. So that is something we will have to ask Professor Berry
   4     about?
   5   A. That will be best, I think.
   6   Q. Picking up one of the themes of the morning, Rachel
   7     Ferris wrote a note -- let me see if I can locate it.
   8     It is 309/109, on 9th February, just as the issue
   9     I think was breaking --
  10   THE CHAIRMAN: Is there anything on that --
  11   MR LANGSTAFF: No, there is not. If we can move down:
  12        "Retention of hearts following postmortem."
  13        What she describes is:
  14        "In some cases, either problematic or interesting
  15     cases, the heart will be retained following postmortem.
  16     It will then be discussed at the next
  17     clinical/pathological conference (usually within two
  18     weeks of the postmortem) and will then be disposed
  19     of ..."
  20        So certainly the practice that she knew of at that
  21     time was not for retention but for disposal following
  22     postmortem.
  23   A. Yes.
  24   Q. She says:
  25        "We do not have a protocol ... for dealing with
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   1     requests from relatives to obtain retained hearts and
   2     they will have been disposed of within the two-week
   3     period. Relatives are not informed ..."
   4        She says this, in the next paragraph:
   5        "The retention and disposal of organs in this way
   6     takes place in accordance with statutory regulations,
   7     but I am concerned that we do not inform relatives."
   8        So that there is no misunderstanding, what do you
   9     think she is talking about when she says she
  10     is "concerned that we do not inform relatives."?