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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 Childrens 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 Coroners 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 UBHTs reaction to the disclosure of information to parents about their childs 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 childs 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.
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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 0084 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 0085 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."?