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Hearing summary6th September 1999 Oral Hearings resumed in Bristol today. In a week which focuses on the provision of Counselling Services. The Inquiry heard today from parents recounting their experience of their childrens treatment and care at the Bristol Royal Infirmary (BRI) and Bristol Childrens Hospital (BCH). They answered questions about how they were given information about their childs diagnosis and care, who gave them information and whether there was support for them within the hospitals. Brenda Spicer from Gloucester told the Inquiry about her son Gary, who was born in July1988 with a congenital heart defect. Erica Pottage from Devon recounted her experience of the treatment of her son Thomas, who was born in July 1993. Julie Johnson from Bristol gave evidence about her son Maxs care in Bristol, where he was born in November 1993. Helen Johnson concluded the days evidence by telling the Inquiry about her daughter Jessica, now six years old, who is still receiving treatment to correct her heart defects. |
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FULL TRANSCRIPT
1 Day 44, 6th September 1999 2 (10.40 am) 3 THE CHAIRMAN: Good morning, everyone. Good morning 4 Mr Langstaff. 5 STATEMENT BY MR LANGSTAFF 6 MR LANGSTAFF: Good morning, sir. Since it is now some time 7 since we last met in public, it is probably right that 8 I should take a moment or two to say what has been 9 happening and bring everyone in what we call our "wider 10 public" up to date. 11 Since we last met, a number of important 12 developments have taken place, both in terms of the way 13 in which this Inquiry is managing the evidence, in terms 14 of moving towards finality in the timetable, and indeed, 15 looking ahead to Phase II of the Inquiry, which will 16 begin early next year. 17 Although a number of us may have been on holiday 18 over the August period, work has continued here in 19 Bristol in the Inquiry offices and an analysis of 20 evidence which has been heard and collected during the 21 period of March to July has been under way and has been 22 consolidated. That has involved a lot of reading, 23 inevitably, and has resulted in the commissioning of 24 further evidence and further work. 25 Amongst those from whom we appealed for evidence 0001 1 were the junior doctors and nurses who had been at the 2 Bristol Royal Infirmary or the Bristol Children's 3 Hospital during the period covered by our terms of 4 reference, 1984 to 1995. 5 We think, it has to be said, that we know most of 6 the people who might be described -- all the people who 7 might be described as major participants in the events 8 which unfolded, but we are, of course, keen to hear from 9 anyone who thinks they may have anything to say. 10 The doctors, from whom we have yet to hear in 11 numbers, although we have heard from some of them, are 12 junior doctors and nurses, and it may well be the case 13 that perhaps they feel that they have little of 14 importance to say: a reflection, perhaps, of their 15 status at the time as doctors, or a reflection of the 16 fact that some of them may only have spent a matter of 17 months here in Bristol. 18 It is difficult for us to trace them because there 19 are no off-the-shelf lists of all those who worked at 20 the BRI during the 12 year period. Accordingly, we 21 would, through me, this morning, add to the appeal which 22 has already been made: if anyone has not yet heard from 23 the Inquiry -- we have contacted many of them -- who 24 worked as a junior doctor or nurse in the Bristol Royal 25 Infirmary or the Children's Hospital during the period 0002 1 of our terms of reference, please get in touch with us. 2 For those who feel they may have nothing useful to say, 3 could I just observe that we would rather be the judges 4 of that and that they should trust the Inquiry to know 5 whether they will have something which can add to the 6 knowledge that has already been accumulated, or not. 7 There is a very different picture, I have to say, 8 so far as doctors who referred children to Bristol is 9 concerned. There can I pay credit to the number of 10 doctors, virtually all of whom we have contacted, 11 virtually all of the doctors who referred patients on to 12 Bristol have responded to the Inquiry, and those who 13 have something material to say will of course be invited 14 to say that in the usual way. 15 Turning from evidence which we have yet to hear to 16 the further appeal for people to contact the Inquiry. 17 It is now common knowledge, because it has been set out 18 on the Internet that a clinical case note review is 19 under way. There are 80 sets of medical records which 20 are being scrutinised by teams of medical experts. We 21 made undertakings which we intend to honour in respect 22 of the confidentiality of those records. It is 23 difficult to contact all the families involved, although 24 we think we have contacted most. Those parents with 25 whom the Inquiry has been in regular contact will know 0003 1 whether their child is or is not one of the cases 2 involved in the detailed clinical case note review. 3 However, there are some parents whose identity is yet to 4 be ascertained and have yet to be traced. It is not an 5 easy job, as anyone listening will understand. Parents 6 whose child underwent heart surgery at the Bristol Royal 7 Infirmary or the Bristol Children's Hospital between 8 1984 and 1995 and who have -- and I emphasise this -- 9 never been in contact with the Inquiry, should please 10 get in touch if they have any reason to think that their 11 child's case may be part of the current review. 12 For those who are reading this on the Internet, 13 there is a local freephone telephone number for anyone 14 who wishes to enquire, and as I say, I emphasise that 15 this is parents who have never yet been in contact with 16 the Inquiry. The number is 0845 3000 613. 17 We are currently trying to trace 20 of the 80. 18 The expert teams who are looking at those sets of 19 case notes in the initial sample are five in number: 20 a cardiac surgeon, cardiologist, anaesthetist, 21 intensivist, pathologist, and paediatric nurse or 22 intensive care nurse. There are a number of such 23 teams. I am happy to report that we now have a cohort, 24 if that is the right description, of 51 experts in total 25 advising the Inquiry, and again, I am pleased to report 0004 1 that virtually everyone who has been invited to join the 2 expert panel from the number of qualified experts in the 3 country, invited of course after nomination by those who 4 might have an interest in the Inquiry, has been happy to 5 give of their services. For that we are grateful. 6 One expert to the Inquiry who will not be involved 7 in the clinical case note review but is present with us 8 today and who I shall invite in a moment or two to say 9 a few words about herself is Valerie Mandelson who sits 10 to my right on what has become known as the expert 11 table. She has a particular expertise in counselling, 12 which is appropriate, because that is where we shall 13 begin the autumn's programme. 14 If I can turn, then, to the programme for this 15 autumn, we will sit for hearings for the next three 16 weeks and then take a break for a week, so that there 17 will be no hearings in the week which begins 18 27th September. After that, we start again on Monday 19 4th October. 20 We will go on from then until 25th October, and 21 have a reading week for us, a break for others, until 22 1st November. We will then continue with the oral 23 hearings all the way through up until just before 24 Christmas. 25 So far as the first three weeks are concerned, 0005 1 what we have in store for you, members of the Panel, is 2 this. Today we shall hear once again from parents. 3 There are four parents who are going to tell us their 4 stories. Can I emphasise that we are today, this week, 5 considering Issue I, which is counselling, the 6 information and support. That is the focus of the 7 hearing. 8 Each of the parents who is going to give evidence 9 today has a story to tell, which in part may be 10 distressing. It would be wrong if I were not to say 11 something about why it is that some of the details of 12 their story and their child's story will almost seem to 13 be "skated over" in evidence. It is not that this 14 Inquiry does not wish to pay proper respect to what has 15 happened. It is not that those details are unimportant; 16 they are there in writing on each of the statements. It 17 is merely because, in order to conduct this Inquiry in 18 an efficient way, and to get at the details which you 19 have to get at in order to complete your report, we must 20 necessarily focus upon certain aspects of the care. It 21 would be entirely wrong if anyone were to feel that, by 22 focusing upon certain aspects, that other perhaps, to 23 the parent, more important aspects of their child's care 24 and life were in some way being given less attention 25 than they deserve. I apologise if that is an impression 0006 1 that they are left with. I am sure -- I hope -- that 2 the parents giving evidence today will understand. It 3 is important that those who listen also appreciate what 4 today's programme is about. 5 We will hear this morning from Mrs Brenda Spicer 6 and Erica Pottage. It will be this afternoon when we 7 hear from Julie Johnson and Helen Johnson. Tomorrow is 8 by way of exception to this particular issue. It will 9 be the first of the expert evidence sessions when we 10 shall take evidence, expert evidence, to assist the 11 Inquiry panel as to broadly the nature of congenital 12 heart defects, their problems, the nature of the 13 surgery, investigations, appropriate treatment and the 14 like. This begins with Professor Robert Anderson, who 15 is a Professor of Paediatric Cardiac Morphology, who 16 will, tomorrow, give us his input from very considerable 17 experience of dealing with the development and structure 18 of the paediatric heart. 19 That begins at 10.30. We normally, of course, on 20 a Tuesday start at 9.30, but by reason of his travel 21 arrangements we begin at 10.30 tomorrow, not 9.30. 22 Wednesday and Thursday: we will hear on Wednesday 23 from the Reverend Cermakova, the Chaplain at 24 St Michael's Hospital, and from Helen Stratton, who was 25 for much of the time with which we are concerned 0007 1 a cardiac liaison nurse and support nurse specialist, 2 amongst other things researching into parents' reactions 3 to their child's treatment at the BRI. 4 On Thursday we will hear from Jean Pratton, the 5 former Honorary Secretary of the Bristol and South West 6 Children's Heart Circle which provided much of the 7 finance for counselling services and accommodation, 8 amongst other things, at the BRI, and from Mrs Helen 9 Vegoda, who was a counsellor in paediatric cardiology at 10 the Bristol Royal Infirmary. 11 Next week is largely a week given to, again, 12 expert evidence as to the nature of the problems which 13 confront the clinicians. But on Monday, finishing off 14 some of the issues we were looking at before the summer 15 break, we will hear from Sir Donald Irvin, President of 16 the General Medical Council. 17 There will follow seminars on Tuesday, Wednesday 18 and Thursday, first of all from cardiologists, expert 19 evidence; then from a cardiologist and two 20 cardiothoracic surgeons; and on the Thursday, from 21 a cardiac surgeon, an intensivist and cardiologist and 22 a cardiac nurse clinician, as to the importance of 23 intensive care. 24 The third week in the three-week batch we will 25 hear from Sir Graham Hart, the Permanent Secretary of 0008 1 the Department of Health from 1992 to 1997, and then, on 2 Wednesday 22nd September and Thursday 23rd September, we 3 will revisit Issue J. It is likely that on 4 21st September we will hear from parents in respect of 5 Issue J, Issue J being the question of the retention of 6 organs. We will, in that week, hear from Dr Michael 7 Ashworth and on 23rd September, from Professor Berry, 8 Professor of Paediatric Pathology at St Michael's 9 Hospital. 10 The Coroner for Avon, Mr Forrest, has agreed to 11 give evidence, but for timetabling reasons it is not 12 possible for his evidence to be heard during that week, 13 but it will be at a soon and convenient date after that. 14 Broadly speaking, the work which will then follow 15 will be: in October, we will look at the history of and 16 the details of concerns which were raised in Bristol by 17 those, and amongst those other than clinicians directly 18 involved in treatment. We expect that before we come to 19 dealing with clinicians, we will have the results of the 20 first stage in our approach to statistics which, if you 21 remember, was outlined to the Inquiry, which took advice 22 from Dr David Spiegelhalter just before we broke for the 23 summer. It is likely that the clinicians who were 24 principally involved in the treatment of children will 25 deal with both the question of adequacy and the question 0009 1 of the concerns raised, and answer such questions as 2 arise in respect of informed consent in the November and 3 December periods. 4 So that is a broad map of where we are going, 5 having reminded you of where we are coming from. 6 In the more distant future, there is Phase II of 7 the Inquiry, where you, the Panel, will wish to consider 8 the evidence that you have heard and consider what, if 9 any, recommendations you feel it appropriate to make to 10 the Secretary of State, and for that end, will intend, 11 I know, to canvass various possible recommendations with 12 those who have something to say in particular about them 13 in a series of seminars. 14 The proposals which have been made by this Inquiry 15 in respect of Phase II were sent out for consultation, 16 and I am pleased to report that thus far we have had 24 17 detailed responses, so it is plain that although it is 18 some months distant yet, it is already exciting 19 considerable interest in what one might describe as 20 circles which have something to add. 21 Sir, that is enough, I think, from me. It was, 22 perhaps, more than a moment or two! Before Mrs Spicer 23 comes to give her evidence, Mr Maclean will be asking 24 her the questions, I wonder if I may just ask Valerie 25 Mandelson to introduce herself, and anticipate that 0010 1 perhaps later during the course of the evidence, she may 2 have something useful to contribute publicly to us in 3 respect of counselling and information services. 4 It is better, I think, that she introduces 5 herself, rather than that I do. 6 MRS MANDELSON: Thank you. Good morning. My name is 7 Valerie Mandelson and I am employed as manager and 8 senior counsellor at the Alder centre. The Alder centre 9 is based at Alder Hey Children's Hospital and is 10 a centre to offer support and counselling to anyone 11 affected by the death of a child. It has been open for 12 the past ten years and we provide a range of services to 13 bereaved parents, from parents who have lost a child 14 through miscarriage right through to the death of an 15 adult child. Not only children from the hospital, but 16 from the whole of the North West, particularly 17 Merseyside. As a centre we offer training and 18 consultation to other professionals and carers who may 19 be supporting bereaved families. 20 THE CHAIRMAN: Thank you very much, first, for that, and 21 secondly, for being with us during the next days while 22 we take this range of evidence. 23 Mr Maclean? 24 MR MACLEAN: Sir, good morning. Can I invite Mrs Spicer to 25 come to the witness table, please. 0011 1 MRS BRENDA SPICER (SWORN): 2 Examined by MR MACLEAN: 3 Q. Your full name is Brenda Jean Spicer? 4 A. That is correct. 5 Q. And you are, I think, a member of the Bristol Heart 6 Children's Action Group? 7 A. I am, yes. 8 Q. Could I ask you to look at the screen beside you, 9 please, and could I have document WIT 253/1? That is 10 the front cover, is it not, of the written statement 11 that you have made to the Inquiry? 12 A. It is, yes. 13 Q. If we go over the page, please, to page 2, that is the 14 first page of that statement and that is your signature 15 at the bottom? 16 A. It is, yes. 17 Q. As you say there, you and your husband Robert William 18 Spicer, who is present, I think, here this morning, had 19 a baby boy Gary, and Gary was born on 13th July 1988? 20 A. That is correct, yes. 21 Q. Obviously I will explore that a little more in 22 a moment. Can I just take you to page 13? That is the 23 last page of the statement, is it not? 24 A. It is, yes. 25 Q. And that is your signature again? 0012 1 A. It is, yes. 2 Q. You also submitted very helpfully to the Inquiry, if we 3 go to page 15, some annotated notes. These have been 4 typed up, if you go to page 17. The heading there is 5 "Dr Martin - Consultant. Questions put to Dr Martin". 6 As is clear from the contents of your statement, those 7 are notes that you made at a meeting with Dr Martin some 8 considerable period of time after your son was operated 9 on at the hospital? 10 A. Yes, correct. It was a friend that took the notes. She 11 was with me. We saw Dr Martin in February of 1998. 12 Q. We will come back to that. Page 20: would you explain 13 the provenance of that? 14 A. This is the diagram that Dr Martin drew for us on the 15 day, showing us the four repairs that had to be -- 16 Q. When you say "on the day", you mean at the meeting in 17 1998? 18 A. That is right, yes. 19 Q. I think those are all the documents that you have 20 submitted to the Inquiry, are they not? 21 A. That is correct, yes. 22 Q. Can I take you back in time then, Mrs Spicer, to 1988, 23 and to paragraph 7 of your statement at page 3. 24 At this stage your son Gary had been born at 25 a healthy weight of 7 pounds and 11 and a half ounces 0013 1 and although a heart murmur had been detected when the 2 paediatrician examined Gary, he had been discharged home 3 and appeared to be perfectly normal? 4 A. That is correct, yes. 5 Q. Then paragraph 7, you say that about a month later, 6 a month after the outpatient appointment at Gloucester, 7 there was an appointment to see Dr Martin, the 8 cardiologist? 9 A. That is correct, yes. 10 Q. At what age would Gary have been at that stage? 11 A. Probably about six weeks, a month to six weeks. 12 Q. He told you that Gary was suffering from tetralogy of 13 Fallot? 14 A. That is right, yes. 15 Q. Had you ever heard of tetralogy of Fallot before? 16 A. No. 17 Q. What did Dr Martin explain was the problem? 18 A. I cannot remember too much about it. I know that it 19 would have to be four repairs done, but he said that 20 initially Gary would have a smaller operation, probably 21 at about six months old, they would take a vein from his 22 leg to help the heart, and the full correction would be 23 done when Gary was three years old. 24 Q. So as we see from paragraph 9 at the foot of the page, 25 you understood that Gary was going to hopefully undergo 0014 1 two operations? 2 A. That is right, yes. 3 Q. A full correction being three years or so -- 4 A. When he was older and stronger and could cope, yes. 5 Q. So having been told that your son was suffering from 6 this congenital heart condition, the next contact which 7 Gary had with the Bristol hospital was in February 1989, 8 was it not, when he came here? 9 A. He came to have the catheter test. That was in the 10 February, yes. 11 Q. That is paragraph 12, page 4. 12 A. Yes, that is right, yes. 13 Q. In the interim, Gary had been seen by Bristol 14 cardiologists at clinics which they held in Gloucester, 15 because it was closer to your home? 16 A. That is right, yes. 17 Q. At this stage, in February 1989, when Gary was just 18 a little over six months old, was there some discussion 19 at that stage about the operation options for Gary's 20 condition? 21 A. No. There was no discussion. Gary had the tests done 22 at the Children's Hospital, and Dr Martin came to us and 23 said that he was "in fine stead for the big one", but he 24 said it was not our concern, he would go away and 25 discuss it with the surgeons, and then they would decide 0015 1 what operation Gary would have and they would notify us 2 at a later date, which is what they did. 3 Q. What did you understand by "he is in fine stead for the 4 big one"? 5 A. Well, the full correction. 6 Q. So you understood that in fact it was now being 7 suggested that Gary should undergo the full correction 8 in one go? 9 A. That is right, because he was thriving and doing very 10 well, and they thought it would be more beneficial that 11 Gary had one major operation rather than two. 12 Q. When you saw Dr Martin, you were accompanied, I think, 13 by your husband, were you? 14 A. Yes, we were together, yes. 15 Q. Who else was present at the discussion with yourself, 16 your husband and Dr Martin? 17 A. Dr Martin came on to the ward with other doctors. I do 18 not know who they were. He said to us that Gary was in 19 fine stead and that the success rate was 90 per cent, 20 and that was excellent, and because I remember saying to 21 him, "What happens to the other 10?". I had not thought 22 of death at this time. He explained to us that the 23 other 10 meant "we would lose them". 24 Q. In other words, those patients died? 25 A. That is right. 0016 1 Q. You understood that happened to the other 10 per cent? 2 A. Yes. So when he said 90 per cent, we thought, "Well, 3 Gary has an excellent chance", so we sort of went with 4 what they said. 5 Q. Can I just ask you to look at an extract from Gary's 6 medical records? It is MR 2506/0051. It is the 7 right-hand side of the page. It is that paragraph, 8 perhaps we could look at that, please. We will blow it 9 up for you, Mrs Spicer, to make it a bit easier. This 10 is 15th February 1989, so a day or two after the 11 catheter had been carried out. Presumably the results 12 of that were to hand, were they? 13 It says: 14 "Patient referred from cardiac catheter. Parents 15 seen by Dr Martin and told the pulmonary valve has 16 narrowed. He also briefly discussed the two operative 17 options: either a full correction or a shunt. Gary's 18 [I think the next word is 'arteries'] are at present 19 a little too small for the full correction, but 20 Dr Martin will see parents in Gloucester in a couple of 21 weeks, having liaised with the surgeons. Gary will be 22 reviewed in the morning prior to discharge." 23 Can you tell me -- I appreciate it was a long time 24 ago and probably nobody has asked you this since: can 25 you tell me what you remember about the brief discussion 0017 1 which this note suggests you had with Dr Martin -- 2 A. We did not have one. He walked -- I can see him now. 3 He walked down the ward, he held out his hands and he 4 said "He is in fine stayed for the big one", so from 5 that day on, we understood Gary would go for the full 6 correction. 7 Q. Did you say "Dr Martin, we understood it was going to be 8 a two-stage process"? 9 A. No. He said it was a 90 per cent success rate and he 10 was almost excited by this, so we just went along with 11 what he said. The only time we discussed the two 12 operations we were in Gloucester. 13 Q. What did he say there? 14 A. That was when Gary was very young, and he said that he 15 would have a smaller operation when he was about six 16 months old. That was when he discussed the vein being 17 taken from his leg, but that was the only time that he 18 spoke to us of that operation. 19 Q. We discussed that at the beginning: that your initial 20 contact with Dr Martin, when Gary was six weeks or so 21 old, suggested that he would undergo a two-stage 22 process? 23 A. Yes. 24 Q. Here we have the note of 15th February 1989 suggesting 25 that there are two operative options: either a two-stage 0018 1 process or a full correction in one go. It is suggested 2 in this note that there was a brief discussion at this 3 stage. You have told me you do not remember a brief 4 discussion? 5 A. No, I do not, no. 6 Q. Do you remember a discussion about options, either 7 a two-stage process or a one-stage process, any other 8 time? 9 A. No, because on this day he said that it was not our 10 concern; he would go away and discuss it with the 11 surgeons, and they would decide as to what Gary was 12 going to have. 13 Q. The note does suggest, it is fair to say, that Dr Martin 14 suggested that your son was not quite ready for the full 15 correction at that stage. You see the line "Gary's 16 arteries are at present a little too small for the full 17 correction, but Dr Martin will see parents in Gloucester 18 in a couple of weeks, having liaised with the surgeons." 19 What do you recall the feedback to you being from 20 Dr Martin, he, Dr Martin, having liaised with the 21 surgeons? 22 A. As far as I recall, it came by post, telling us that 23 Gary would be admitted on April 7th, because these tests 24 were in the February. We did see Dr Martin in the 25 meantime and he said something about Gary's oxygen being 0019 1 fairly low in the body, so they needed to do something: 2 "he does need an operation". If I remember rightly, it 3 came in the post, what they were actually going to do. 4 Q. But do you remember any further feedback to you, to your 5 husband, discussing these options? 6 A. No, no, definitely not, no. 7 Q. Or was it, as far as you were aware from the 15th -- 8 A. The smaller operation was only told to us in the first 9 instance. It was never mentioned again. 10 Q. So there was no question of choosing between the two 11 options? 12 A. No, because he said it was between him and the surgeon 13 to discuss it together. He said it was not our 14 concern. 15 Q. Did this strike you as being peculiar or odd? Did it 16 cause you any concern? 17 A. No, because I had never had any dealings -- we just went 18 along with what we were being told. 19 Q. So you are not perhaps in a position to help us with the 20 content of the discussion that might have taken place 21 between Dr Martin or other cardiologists on the one hand 22 and the surgeons on the other? 23 A. No, not at all, no. 24 Q. The operation that Gary had was conducted by which 25 surgeon? 0020 1 A. I am sorry, I was just reading that (indicating 2 screen). If Dr Martin had said to us that Gary was not 3 ready for the full correction, we would have stopped it 4 anyway. If he had said that to us, what he has written 5 down here, we would not have gone along with the full 6 correction anyway. 7 Q. That is why I was asking what feedback you had? 8 A. No, we did not. There is no way we would have put our 9 child in for that, knowing he was not ready. 10 Q. This note suggests that there is -- 11 A. No. 12 Q. -- as I said, a question mark over Gary's -- 13 A. No, we were not told at all, no. 14 Q. -- there was a question mark over Gary's fitness for the 15 full correction at this stage. He did in fact have the 16 full correction operation? 17 A. He did, yes. 18 Q. I was wanting your help with whether you had received 19 any information which would have suggested to you that 20 in fact Gary was capable of undergoing -- 21 A. He said, Dr Martin said, "He is in fine stead". He put 22 his hands out as he said it to me, and he said it was 23 90 per cent success rate, so everybody seemed to have 24 the opinion that they could do this; that it would be 25 okay. That is the first time I have seen that. 0021 1 Q. Do you recognise the name, it may be "Howell" in the 2 right-hand column, the person who has signed these 3 notes? 4 A. No. 5 Q. So the position was, then, that Gary had been 6 catheterised in February 1989, and he eventually had 7 surgery in April of 1989, I think on 11th April? 8 A. He did, yes. 9 Q. By that time he would have been perhaps a little bit 10 bigger and a little bit stronger? 11 A. Yes, he was doing very well, actually, considering. 12 Q. So might it not have been that whilst Gary's arteries 13 were, as the note says, at present a little too small 14 for the full correction, by April -- 15 A. Well, possibly. I do not know. 16 Q. But you were not -- 17 A. Definitely not, no. 18 Q. At all events, Gary did have the operation on 11th April 19 1989, did he? 20 A. Yes, he did. 21 Q. He had that operation at the Bristol Royal Infirmary? 22 A. He did, yes. 23 Q. Before that operation took place, prior to the immediate 24 period before that operation, had you or Gary ever been 25 in the Bristol Royal Infirmary before? 0022 1 A. No. 2 Q. Did you have any information or communication from the 3 Bristol Royal Infirmary before Gary was admitted to lead 4 you to -- so you would know what to expect? 5 A. Yes, we had a package come with Gary's dates of 6 admission. Yes, there was quite a bit of information in 7 there, I recall. 8 Q. Do you remember what was said, what type of material it 9 was? 10 A. No, I do not, no. 11 Q. Does the name Helen Stratton ring a bell? 12 A. It was Helen Vegoda, when we were there. 13 Q. Yes, you are quite right, Helen Stratton had not -- you 14 are quite right. Helen Vegoda was at that stage working 15 at the Children's Hospital and the Bristol Royal 16 Infirmary? 17 A. Yes, that is right, yes. 18 Q. 10th April 1989 was the day before Gary's operation? 19 A. That is correct. 20 Q. I think you met Mr Dhasmana that day? 21 A. Yes. I think it was that evening. It was either that 22 evening or the one before. I cannot really remember. 23 Q. Had you ever met him before? 24 A. No. 25 Q. Had you heard his name prior to that stage? 0023 1 A. No. 2 Q. This is paragraph 22 of your statement, at WIT 253/6, 3 paragraph 22. If we go to the bottom of the page, 4 paragraph 24, your statement deals with the discussion 5 that you had with Mr Dhasmana on 10th April. 6 If we go over the page, page 7: 7 "He explained to us the surgery was not so 8 straightforward as working on an adult because of the 9 smaller scale. Mr Dhasmana went on to say he never knew 10 what he might find until he opened up." 11 Was there any difference in your mood or 12 expectations after the meeting with Mr Dhasmana compared 13 to the earlier discussion with Dr Martin? 14 A. Definitely. 15 Q. In what way was it different? 16 A. Mr Dhasmana, the way he spoke to us and said, "This is 17 a very big operation for such a small and young child", 18 and it shocked us, really, because we thought we had 19 such great expectations of, you know, they could do 20 this, and Dr Dhasmana put a completely different picture 21 to us, really. The fact that he said, because we were 22 led to believe it was Fallot's tetralogy without 23 complications, but Mr Dhasmana said "I never know until 24 I open up what I will find; I could find other 25 complications and things", it was awful, really. 0024 1 Q. Dr Martin had told you that the success rate was 90 per 2 cent? 3 A. He did. 4 Q. You understood that to mean that 1 in 10 patients died? 5 A. That is right. 6 Q. But notwithstanding that, having spoken to Dr Martin, 7 you felt fairly confident? 8 A. We did. 9 Q. Did not Mr Dhasmana give you a different assessment of 10 percentage risk than Dr Martin? 11 A. He did not talk percentage at all to us, no, he did 12 not. But he was definitely putting a different picture 13 to it, to us: quite distressing, really. 14 Q. He painted a gloomier picture? 15 A. He did, definitely, from the other doctors and people we 16 had spoken to. 17 Q. Did you ask him whether or not the number of patients on 18 average who died was more than 1 in 10? 19 A. No, we did not, no. I think we were in shock then. We 20 did not say too much. 21 Q. Did it strike you as being -- did it jar with you that 22 you were being given what you thought to be a different 23 impression? 24 A. It did, definitely. 25 Q. You say at paragraph 26, just below where the screen is, 0025 1 that there was no mention of brain damage or other 2 non-fatal injury? 3 A. No, nothing. 4 Q. Was that something that had passed through your mind, 5 that Gary might be left with brain damage after the 6 operation? 7 A. At the time? No. Not at all. It never occurred to us 8 at all. 9 Q. 11th April 1989 was the day that Gary had his operation? 10 A. Yes. 11 Q. And if we go over the page, please, to page 8, a nurse 12 went down with Gary to theatre, and this is about 13 8 o'clock in the morning? 14 A. Yes. 15 Q. You were told that it would be a good idea to ring back 16 at 1.30? 17 A. That is right, yes. 18 Q. Did you take Gary down to be anaesthetised? Were you 19 with him at that stage? 20 A. No, we went to the lift and asked one of the nurses to 21 go with him, because we found it too distressing. 22 Q. You were given the option, were you? 23 A. We were, yes. 24 Q. And you declined? 25 A. That is right. 0026 1 Q. Then initially, as you say in your statement at 30 and 2 31, things seemed to go well, did they not? 3 A. Yes. They all seemed, when Gary first came on to the 4 ward, you know, the nurses and -- they all seemed very 5 pleased. 6 Q. So at this stage, you understood that Gary had undergone 7 the full correction? 8 A. Yes. 9 Q. And that if everything went well, that would be it? 10 A. Yes. 11 Q. You spoke, I think, that day to Mr Dhasmana -- this is 12 paragraph 31. 13 A. Yes. 14 Q. He had some bad news in the sense that Gary had a faulty 15 heart valve and so in fact this was not to be the end of 16 the operations for Gary at all? 17 A. That is right. 18 Q. What did Mr Dhasmana say at that stage about the 19 surgery? 20 A. He said that Gary had a faulty valve and that he would 21 need another operation at a later date, and I was quite 22 shocked. I said, "Oh, when is that going to be?" He 23 said "Let us deal with this problem first. Let us get 24 him better and we will talk about another operation at 25 a later date". That was all that was said. 0027 1 Q. Did he seem surprised that the faulty valve had been 2 found? 3 A. I do not know. I do not think so. I do not think so. 4 He was quite matter-of-fact about it. I do not know, 5 really. 6 Q. Did you ask him, "Well, why did you not know about this 7 before?" 8 A. No, I did not. I just wanted my child to get better. 9 I could not take on board something else that was going 10 to happen later on. I could not deal with it, really. 11 Q. Looking back now, is that a question that has occurred 12 to you since? 13 A. Yes, definitely, because we had just understood it was 14 Fallot's tetralogy and no complications. To me, that 15 was a complication. 16 Q. Jumping ahead a little bit, we know you saw Dr Martin in 17 February 1998, I think, it was -- during 1998. Was that 18 one of the questions you asked him then? 19 A. Yes. I think we did mention it. 20 Q. What did you understand the response or the answer to 21 be? 22 A. I cannot remember. I cannot remember at this moment, 23 actually. It is on the notes. I got the impression 24 that Dr Martin knew about the valve, actually. 25 Q. If you go to page 17, paragraph 10, the question to 0028 1 Dr Martin was [adding some words to make more 2 grammatical sense]: if a faulty valve had been picked up 3 in the operation, why had it not been picked up before, 4 and if it had been picked up before, would it have 5 changed the recommendation? 6 I assume that is the recommendation as to the 7 surgery that Gary underwent? 8 A. Yes. 9 Q. The response is recorded as being: 10 "It was recognised pre operation and discussed 11 with the surgeon". 12 A. But I do not remember ever being told about the faulty 13 valve at all. 14 Q. That is why it was a shock to be told about it 15 immediately after the operation? 16 A. It was, yes. 17 Q. Back to your statement at page 8. Mr Dhasmana seemed 18 pleased by Gary's progress, did he not? 19 A. Initially he did, yes. 20 Q. Paragraph 32, and not surprisingly, that pleased you 21 too? 22 A. Oh, definitely, yes. 23 Q. You then refer, at paragraph 33, that evening, that is 24 the evening of the operation, 11th April, to Gary's 25 blood pressure dropping and to the nurses appearing 0029 1 concerned for his condition? 2 A. That is right, yes. 3 Q. Over the page, please, paragraph 34, one nurse said "He 4 is very, very poorly". 11th April 1989 was a Tuesday. 5 Then you say, at 35, the following day the nurses seemed 6 to be "backing off": so there was an air of concern? 7 A. Yes. They were not so attentive to Gary. They were not 8 sort of like they were the day before, you know, as 9 if -- 10 Q. You mean they were not being so social, they were being 11 more professional, as it were, they were spending more 12 time actually doing things with him, rather than giving 13 him more general nursing care? 14 A. What, the day before, from surgery? 15 Q. Yes. 16 A. Yes, there was definitely a change. 17 Q. You say at 35: "If we asked anyone, such as an enquiry 18 as to how Gary was progressing, we were told we would 19 have to speak to Mr Dhasmana"? 20 A. That is right. 21 Q. When did you next speak to Mr Dhasmana? 22 A. To be truthful, I cannot really remember. I think 23 probably between the Tuesday and the Saturday. We did 24 probably talk to him, but I cannot really remember, to 25 be truthful. 0030 1 Q. What did you understand the prognosis to be at that 2 stage between the Tuesday and the Saturday? 3 A. Gary's blood pressure had stabilised, and one doctor 4 said, "Well, we think Gary is going to be in intensive 5 care for probably, you know, two weeks", which was sort 6 of a week longer than they expected, it was going to 7 take a bit more time for him to come round, but we did 8 not mind so long as he was going to be all right. 9 I seem to remember during those couple of days they had 10 to restart Gary's heart, something had gone drastically 11 wrong, and they sent us off the ward. 12 Q. So you knew he was very sick? 13 A. By this time we did, yes. We knew things were not 14 right, but we did not really know what was happening, to 15 be honest with you. 16 Q. Did you think at this stage that it looked as if Gary 17 might be going to die? 18 A. No, not until the Saturday. 19 Q. The Saturday is paragraph -- 20 A. I am not too clear on those days between sort of the 21 Wednesday, Thursday and Friday. I cannot really 22 remember. 23 Q. It would be fair to say that on the day of the 24 operation, initially everything seemed to be going well? 25 A. It was. By the teatime things had started to change. 0031 1 Q. Deterioration by the evening of the operation? 2 A. Yes, the blood pressure was the cause for concern that 3 day, as far as I understood it. 4 Q. Tell me about the Saturday? 5 A. The Saturday we were sat with Gary, Mr Dhasmana walked 6 around the ward, put his hand on my shoulder and said 7 "We think he is brain-damaged" and walked away. Rob 8 and I sat there, in shock, really. We went back to our 9 room, and I said to Rob, "How can he be brain-damaged? 10 Nobody has ever said anything about brain damage". So 11 I went back to speak to Mr Dhasmana, but he had gone. 12 They said I would have to wait until he did his rounds 13 to speak to him; he would not come back to talk to me. 14 Q. Did you speak to him? 15 A. Not that day, no. 16 Q. Did you talk to anybody else? 17 A. I spoke to the nurses but they would not talk to me 18 about it at all. They said I would have to wait until 19 Mr Dhasmana came back. I was in such a state. 20 I remember saying, "Does this happen?", you know, and 21 they just said I would have to wait. 22 Q. You mentioned you and your husband went back to your 23 room? 24 A. Yes. 25 Q. Where were you staying throughout this period? 0032 1 A. Initially we were in a house, but when things were not 2 going well they gave us a room in the hospital. 3 Q. Was that one of the two rooms on the same floor as the 4 Intensive Care Unit? 5 A. Yes. 6 Q. Initially, had you been staying in one of the rooms, 7 houses or flats provided by the Heart Circle? 8 A. Yes, we were. 9 Q. Having received this distressing news on 11th April, was 10 there anyone else you were aware of who was there to 11 support you, to help you? 12 A. No. 13 Q. Is that because you would not have welcomed such 14 assistance, or because it was your impression that it 15 was not there? 16 A. Helen Vegoda was actually on leave. She went on leave. 17 She did come and tell us she was going, so I cannot 18 remember exactly the day she went, but she was not there 19 this day, that this happened. 20 Q. When did you next see a doctor about Gary's condition, 21 this news that he was brain-damaged? 22 A. I think probably the following day they decided to take 23 Gary, take some of the drugs off to see if he was -- to 24 get him to come round, because they said he would start 25 twitching as he was taken off the sedation, et cetera. 0033 1 Q. They were reducing the sedatives in order to see if he 2 was going to wake up? 3 A. That is right. This did not happen, so probably 4 Mr Dhasmana -- I honestly do not remember -- someone 5 came and spoke to us and said somebody from Frenchay 6 would be coming in to do a brain scan. I think it was 7 the Monday and Tuesday, they came. 8 Q. What did you understand the purpose of that to be? 9 A. To see if Gary was brain dead, or brain-damaged, 10 I presume. But Mr Dhasmana did talk to us in-between 11 times, but I cannot remember the discussions, to be 12 truthful. 13 Q. If we go to MR 2507/23, this is a letter which I think 14 you have seen this morning from your son's medical 15 notes. It is dated -- it looks like the 18th of the 16 11th, but I think actually it is a 4. It is 18th April 17 1989: 18 "Dear Dr Schutt, 19 "Thank you very much for seeing this unfortunate 20 child. I operated on him a week ago when tetralogy of 21 Fallot was repaired without any technical problem. 22 Post-operative he did well for the first 4 hours, after 23 which his haemodynamic state deteriorated rapidly. For 24 about 12 to 18 hours, his blood pressure was ranging 25 around 45 to 55 systolic, despite a very high dose of 0034 1 adrenalin ... 2 "Unfortunately, his neurological state has not 3 improved. For the last five days, his pupils have 4 remained dilated and fixed. Paralysing agent and 5 sedation has been stopped. EEG has just been carried 6 out which is waiting for Dr Morgan's report, but to my 7 unskilled eyes looks very distressing. I would value 8 your assessment and advice for further management of 9 this very unfortunate child." 10 That is signed by Mr Dhasmana. That is 11 18th April, which was, as Mr Dhasmana says, exactly 12 a week after Gary's operation. 13 Then, if we go back to your statement at 253/10, 14 just before we come to paragraph 40 -- it is difficult 15 to remember, I know, but what was your mental state by 16 19th April 1989? Did you by now expect that Gary was 17 going to die? 18 A. Oh, yes. I think it had happened long before we were 19 told. But, yes, we really did expect the worst now. 20 Q. And the worst came, did not it, on 19th April? 21 A. Yes, round about, I think we saw Mr Dhasmana about 5.30, 22 6 o'clock in the evening on the 19th. 23 Q. Do you remember who was present? 24 A. No, I do not, actually. I know Mr Dhasmana took us into 25 a room, just the three of us, and spoke to us and said 0035 1 that Gary was a very sick child and we had to take him 2 there and there was nothing more they could do. He said 3 that we could have some extra time before everything was 4 switched off if we needed it, but he had pressures as 5 well, you know, so he left the room and gave us some 6 time. So we went back on the ward and the anaesthetist 7 came and switched everything off. They put screens 8 around us. 9 Q. Let me just take you back a little. Do you remember 10 where the room was that you spoke to Mr Dhasmana? 11 A. We went off intensive care. I think it was to the left. 12 Q. Was it his office? 13 A. No, it was just a room with some chairs in. 14 Q. It did not leave any lasting impression, the room? 15 A. No, this little room was where he took us when he needed 16 to talk to us each time. 17 Q. You say in the statement that you spoke to Mr Dhasmana 18 about 5.30 in the evening. I do not think we need to go 19 to this, but I think that in fact the note suggests 20 Mr Dhasmana -- perhaps he made the note -- at 6.30, 21 saying he discussed the matter with you and your 22 husband; that you had been told about Dr Schutt's report 23 and Dr Maisey's findings: "Unfortunately the child is 24 now brain dead. They want time to think it over, think 25 over stopping the ventilating support", and in fact Gary 0036 1 died at about a quarter past 7 that evening. 2 Over that period, between speaking to Mr Dhasmana 3 in the room with your husband and Gary actually dying, 4 do you remember who else was around, who else played 5 a role in supporting you or your husband? 6 A. No-one. There was no-one else. As I say, we went back 7 to the ward and they put some big screens around us and 8 the nurse stood at the head of the bed whilst the 9 anaesthetist switched everything off. I think he asked 10 us, or the nurse may have asked us, if we wanted to hold 11 Gary, which we did, and he then left. 12 Q. Was there anyone who offered to make any practical 13 arrangements, funeral arrangements or transportation of 14 Gary's body? 15 A. No, nothing. 16 Q. Were you offered any such assistance? 17 A. No. 18 Q. You say in paragraph 41 Mr Dhasmana said you could go 19 back to see him at a later date? 20 A. Yes, he did. 21 Q. He said that to you on that date, did he? 22 A. Yes, he did, yes. 23 Q. But you chose not to? 24 A. No. 25 Q. Did you have any further communication from the hospital 0037 1 subsequently? 2 A. No. 3 Q. Concerning Gary? 4 A. No. 5 Q. Do you remember when you left the hospital that night? 6 A. We went back to our rooms, we packed our case and we 7 left. We drove home. 8 Q. The Inquiry has heard some evidence from some parents -- 9 I will just source this: Mr Parsons, Day 2, 17th March, 10 transcript page 106; Mr Curnow, Day 3, page 96, both of 11 whom referred to feeling as if they were put under 12 pressure to get off the scene quickly. 13 A. Definitely. Mr Dhasmana's attitude, as far as we felt 14 that day was, switch off, you know, "Let us get moving, 15 let us switch things off and go". The nurses, no-one 16 spoke to us. They all looked away and looked down. 17 I think quite a few of them were upset, you know. But 18 no, the only nurse we spoke to was when we asked how 19 much we owed them for staying in the house, which they 20 did not accept, they said no, and that was the only 21 people we spoke to. 22 Q. Perhaps you will tell me if you accept this, but there 23 is perhaps a balance to be struck between some bereaved 24 parents who want privacy and time on their own and other 25 parents who might welcome support from outside agencies 0038 1 and it is sometimes difficult to strike the right 2 balance with everyone? 3 A. Yes, I can understand that, yes. 4 Q. What was not done for you which you think ought to have 5 been done in terms of making this difficult time easier? 6 A. I think it was just done so quickly. You know, I look 7 back now and I think, we just left Gary on that bed. We 8 did not -- we just packed up and went so quickly. We 9 were not given any time, you know, even Mr Dhasmana, 10 when he wanted us to switch off, it was, "Well, I can 11 give you a little time but I have got pressures", so you 12 just felt rushed. I just regret that day that we did 13 not sit with Gary longer or where was he moved to, what 14 did he do? We just left. 15 Q. Do you know what happened to him immediately after? 16 A. No. I presume he went to the mortuary. 17 Q. We know that you had a meeting with Dr Martin years 18 later, after the events at Bristol had come to public 19 attention, but other parents -- for example, Mr Bwye, 20 Day 6, 24th March, page 41 -- have told the Inquiry that 21 they received letters from, I think in his case 22 Dr Martin weeks after the death of his child, inviting 23 him back to discuss the matter, to discuss the 24 treatment. 25 A. No, definitely not. 0039 1 Q. You did not receive that? 2 A. No. 3 Q. Just briefly, just before we come to the end of my 4 questions, a postmortem was carried out on Gary, was it 5 not? 6 A. Well, I found out in recent years it was. I did not 7 know at the time. 8 Q. I think this morning, for the first time, you saw the 9 postmortem examination report? 10 A. That is right. 11 Q. I think you had become aware that some of Gary's organs 12 were removed and retained? 13 A. They were, yes. 14 Q. Which were those? 15 A. The brain and the heart. 16 Q. When did you first discover that? 17 A. A few months ago. This year. I cannot remember the 18 date, but they took Gary's brain. Gary died in the 19 April and they disposed of it in July. They still have 20 the heart at the BRI. 21 Q. To this day? 22 A. Yes. 23 Q. Can we look, please, on my screen only first, at 24 MR 2506/21? 25 That is the postmortem examination report on Gary, 0040 1 is it not? 2 A. That is right. 3 Q. If we look at the end of the first paragraph, do you see 4 the heading "History" on the left-hand side, near the 5 top? 6 A. Yes. 7 Q. "A 9 month old child", do you see? 8 A. Yes. 9 Q. Take a moment to read that paragraph. At the end of the 10 paragraph it says: 11 "Post-operative recovery was uneventful". 12 A. Yes. 13 Q. Then over the page, the top of the page deals with the 14 cardiovascular system, that first paragraph. Then 15 towards the bottom half of the page: 16 "In my opinion, the cause of death was cerebral 17 infarction due to or as a consequence of cardiac failure 18 due to or as a consequence of Fallot's tetralogy 19 surgical repair." 20 That is signed at the bottom by Professor Berry 21 who conducted the post-mortem. 22 Do you understand why your son died after the 23 operation which was, it seems, technically a good repair 24 of his congenital heart defect, when his post-operative 25 recovery was initially uneventful? 0041 1 A. All I know is that Gary was brain dead. I have never 2 been given an explanation as to why. 3 Q. This is the final matter I want to deal with: you did 4 have a meeting with Dr Martin? 5 A. That is right. 6 Q. As we have mentioned a few times. That was in February 7 1998, I think? 8 A. I think it was, yes. 9 Q. If we go to page 17, WIT 253/17, question 3: 10 "What is the success rate? We were told 85 to 11 90 per cent. Where did these stats come from?" 12 Dr Martin replied that the mortality now [February 13 1998] was between 3 to 5 per cent, but between 5 and 10 14 per cent in 1989. 15 That would suggest, would it not, that the risk 16 assessment you were given was, if anything, slightly 17 conservative? 18 A. Yes, that is right. 19 Q. Then, at question 6: why was the big operation chosen in 20 Gary's case as opposed to the small one to tide him 21 over? You asked whether Mr Dhasmana was at the table 22 when the decision was taken because in the ward he shook 23 his head and said "This is a very big operation for 24 a baby of this size". 25 The answer does not actually reveal whether the 0042 1 decision was taken for Gary to have the single 2 correction. Do you understand when that decision was 3 taken? We have seen the note of 15th February 1989. 4 A. No, I do not. No. 5 Q. The fact that you asked the question, whether 6 Mr Dhasmana was at the operating table when the decision 7 was taken to have the single correction, might suggest 8 that you were not, in February 1989, at all clear which 9 operation had been decided upon when Gary actually went 10 into the operating theatre? 11 A. I am sorry, I am not -- 12 Q. I am sorry, that was a long question. We have seen the 13 material which suggests that in February 1989 two 14 different options were being discussed. As I understood 15 it, you told me a little earlier that after February 16 1989, there was no further discussion of the two-stage 17 repair? 18 A. That is right. 19 Q. And that Gary was going to have a single repair. 20 A. That is right, yes. 21 Q. Here, in question 6, Dr Martin was being asked when the 22 decision was taken to go for the single repair. 23 A. Yes. 24 Q. And specifically, you asked Dr Martin whether the 25 decision was taken when Mr Dhasmana was in the operating 0043 1 theatre? 2 A. I think it was because Mr Dhasmana gave us a whole 3 different view to Gary's operation at the time, that we 4 wondered, was he at the table? did he really make this 5 decision for Gary? Because Dr Martin was all excited 6 about the operation, "Oh, yes, let us go ahead and do 7 the big one", but Mr Dhasmana did not seem to share his 8 enthusiasm at all, the night before the operation. It 9 was a whole different attitude. I just wondered, was he 10 at the table when all this was discussed? 11 Q. When Gary went into the operating theatre, did you think 12 he was going for one big correction? 13 A. I did, yes, definitely, yes. 14 Q. Question 8, Mrs Spicer: 15 "What is the incidence of brain damage following 16 this operation and why were we not warned of it before 17 the operation? 18 Answer: He was not brain-damaged after the 19 operation." 20 But he was a while after the operation. What did 21 you understand that explanation to be? 22 A. I do not know. I cannot remember now. I think on this 23 day Dr Martin, I just wanted to hear that Gary was not 24 involved in this investigation, and I cannot remember 25 now what -- 0044 1 Q. Was Dr Martin making the point that the operation 2 technically was a success? 3 A. Was a success, and it was just "one of those things" why 4 Gary died and he could not really give an explanation on 5 that day as to why, but he said they did all they could 6 and Gary was in the best place. 7 Q. Question 4, at the time of Gary's operation you asked 8 Dr Martin where was the best place for this operation to 9 be done. No answer is recorded to that question. 10 A. No. 11 Q. Did you not obtain an answer to that question? 12 A. No, I think we went on talking about other things. 13 Q. Did you ask it? 14 A. It could have been my friend, actually. One of us 15 asked. 16 Q. Do you recall it being asked, or are you not sure? 17 A. I think it was probably asked, but I seem to remember 18 Dr Martin saying he was in the right place. I think he 19 was convinced he was in the right place. 20 Q. You see question 11. You asked what was the exact cause 21 of death and Dr Martin's answer is as per the postmortem 22 report we have now seen: cerebral infarction leading to 23 heart failure. 24 Do I take it then that as far as you are aware, 25 Gary's operation was technically a success? 0045 1 A. So they tell us, yes. 2 Q. Even with his subsequent deterioration on the day of the 3 operation, and death just over a week later, the precise 4 reason for that is unknown to you? 5 A. Well, we were told that Gary went into a state of shock 6 after the operation causing the blood pressure to drop, 7 hence the brain damage. That is as we understood it at 8 the time. 9 Q. I am sure it has been far from easy to answer questions 10 about these distressing events in your life. But I do 11 not want to ask you any more. Is there anything else 12 that you want to say to the Inquiry at this stage, 13 either about Gary's treatment specifically or about the 14 Children's Hospital or the Bristol Royal Infirmary in 15 general, anything at all? 16 A. I cannot think of anything at the moment, no. 17 MR MACLEAN: Mrs Spicer, it is possible the Panel may have 18 some questions, it may be there are questions from 19 Mr Lissack as well, but for my part, can I thank you 20 very much for that evidence? 21 THE CHAIRMAN: Mrs Spicer, we have no questions. 22 Mr Lissack? 23 MR LISSACK: No, thank you very much. 24 THE CHAIRMAN: Thank you. I repeat what Mr Maclean said: 25 thank you very much for coming and telling us about 0046 1 Gary. If there are other matters that come to your mind 2 that you would like to let us know about, please know 3 that you can do so: whether you want to tell 4 representatives or write to us or whatever means you 5 wish, we will be here. We will obviously take account 6 of anything else you may have to tell us. For the 7 moment at least, thank you very much indeed for coming 8 today. 9 (The witness withdrew) 10 MR MACLEAN: Sir, I am told that the decision has been 11 taken, I know not by whom, to have a 15 minute break now 12 before Mrs Pottage, the next witness, who will be 13 examined by Mr Langstaff. 14 THE CHAIRMAN: Shall we say, therefore, that we reconvene at 15 12.15? Thank you very much. 16 (12 noon) 17 (A short break) 18 (12.25 pm) 19 MR LANGSTAFF: Sir, Mrs Pottage, please. 20 Mrs Pottage, would you, in our usual way, please 21 stand to take the oath? 22 MRS ERICA POTTAGE (SWORN): 23 Examined by MR LANGSTAFF: 24 Q. You are Erica Jane Pottage? 25 A. That is right. 0047 1 Q. And you are going to tell us about the life and death of 2 your son Thomas, who was born on 3rd July 1993? 3 A. Yes. 4 Q. You discovered shortly after his birth that his great 5 arteries were transposed and he required an operation 6 for that? 7 A. That is right. 8 Q. You have given us a statement. Let us just identify 9 that on the screen in front of you, beginning at 10 WIT 260/1. Is that the start of your statement? 11 A. That is right. 12 Q. Does it go through five pages to page 5, where you sign 13 it? 14 A. That is right. 15 Q. And the contents are true? 16 A. That is right. 17 Q. As you know, today our focus is essentially on 18 counselling, information and support. Some of the 19 details which you set out in the statement we will take 20 as read, and it will not be necessary to go into them in 21 depth, but if there is anything that you wanted to add, 22 then I will ask you to do that at the end, and I hope 23 you will take that opportunity? 24 A. Thank you. 25 Q. You have told us already about the birth of Thomas, 0048 1 which we see in paragraph 1 of your statement, page 1. 2 Within 24 hours, the diagnosis was made. I am going to 3 skip forward and concentrate on paragraph 10 for 4 a moment. I will come back to other details. 5 Paragraph 10, page 4. You set out here a number of 6 criticisms of the care that you received as a parent. 7 You were in Bristol from 3rd July until 13th July? 8 A. That is correct. 9 Q. It was on 13th July, was it, that Thomas died? 10 A. Yes. 11 Q. You say you were moved three times in 10 days? 12 A. That is right. 13 Q. So where were you first? 14 A. First of all I was admitted to the maternity unit, which 15 is across the road from St Michael's Hospital, because 16 I needed care because, having given birth 24 hours 17 previous, they suggested I was admitted there initially 18 with Martin, in a private room. I was then -- 19 Q. Martin is your husband? 20 A. Martin is my husband, yes. He was given a put-up bed 21 beside me and the midwives came a couple of times a day 22 to take blood pressure and medical checks as they do for 23 most people who have just given birth. 24 Q. The second move was a few days later, to St Michael's 25 Hospital where Thomas was in special care? 0049 1 A. The conditions there, I can describe it only like 2 a Portacabin. It was at the back of the Special Care 3 Unit. You had to go outside, and then it was a couple 4 of Portacabin units as I recall it. They were quite 5 badly decorated inside. They had the facilities; there 6 was a bed and washing facilities and a shower room, but 7 it was very drab and it looked very temporary, I think. 8 Q. The third move you made? 9 A. The third move was actually at the BRI. We were there 10 only for the one night, the night prior to Thomas's 11 operation. That was a double bedroom, that was quite 12 nicely decorated, in there. 13 Q. I think that was called the Wiltshire Room? 14 A. It might have been. 15 Q. I will tell you why I say that in a moment or two. Why 16 do you complain -- it may be obvious, but you tell us in 17 your own words about why you complain about moving three 18 times in 10 days? 19 A. It was traumatic enough being in a city that was so far 20 away from my home town with a sick baby, but the 21 upheaval of actually moving -- Martin, my husband, was 22 self-employed so he had to go back to Teignmouth 23 in-between, so I spent a lot of time on my own in the 24 hospital for those 10 days and having to physically move 25 three times in 10 days I thought was quite excessive. 0050 1 Q. Just having given birth as well? 2 A. Yes. I was having to walk across from the hospital, the 3 maternity unit, across the road to St Michael's Hospital 4 anyway, after giving birth. I think it was actually 5 less than 24 hours I was walking between the two. 6 Q. You say in the third sentence, paragraph 10, that you 7 were initially placed with new mothers or expectant 8 mothers, which you found very difficult to come to terms 9 with. That was in the maternity hospital? 10 A. That is right. 11 Q. These are your feelings about it, which you are 12 expressing here? 13 A. Yes, everyone, when they have just given birth -- it was 14 our first child and you are quite excited about having 15 a baby, even though Thomas was not very well, and you 16 wanted to talk about him, and I felt that when I went in 17 to eat in the maternity unit, there was a restaurant 18 there, and there were some mothers that actually had not 19 given birth at that time. I did not want to talk about 20 Thomas because I did not want to worry other mothers 21 that my child was in a Special Care Unit, I thought it 22 might be distressing for other mothers. But also those 23 giving birth were talking about the sorts of things 24 mothers do when they have given birth. I wanted to talk 25 about Thomas but I felt very isolated from them because 0051 1 I did not have my baby with me. 2 Q. What would have helped, looking back on it now, to 3 reduce your feeling of isolation? 4 A. In the first instance, I would have wanted to stay with 5 Thomas in St Michael's Hospital. I would rather have 6 been with him the whole 10 days across the road. 7 Q. Do you mean in St Michael's? 8 A. In St Michael's, yes, I am sorry. 9 Q. Or do you mean in the Children's Hospital? 10 A. It was at the Hospital for Sick Children. Is that 11 St Michael's? 12 Q. You wanted to be in the Sick Children's Hospital with 13 Thomas? 14 A. Yes, where he spent most of his time. Also, I think the 15 staff at the Sick Children's Hospital, they were in and 16 out a lot more than they actually were at the maternity 17 unit. I was quite isolated at the maternity unit. 18 I only saw the nurses twice a day to do checks. Some of 19 us, it was not their fault because I was going across 20 the road to see Thomas, so it was hard for them to catch 21 me, but in so doing, I did not see very many medical 22 staff over there at all. 23 Q. So if you had been with Thomas, you would not have felt 24 so much on your own? 25 A. No, that is right. 0052 1 Q. You describe your feelings in the next few sentences, 2 and make a note about the nurses who were very kind. 3 That is the nurses in all three hospitals or just in the 4 maternity unit you were talking about there? 5 A. No, when we were, when Thomas was in special care at the 6 Sick Children's Hospital, the nurses were very 7 supportive there, because I was there nearly all day, 8 and they were toing and froing to see to the monitors, 9 so they had more occasion to actually talk to me a lot 10 of the time about Thomas, and one nurse in particular 11 got quite attached to Thomas, because she had no 12 children of her own. When we lost Thomas, she used to 13 send birthday cards for him and things like that. So 14 the nurses were very helpful across the road. 15 In the other hospitals, I never saw the same nurse 16 twice, I do not think, at the maternity unit. Because 17 I was toing and froing, as I say I think it was quite 18 difficult for them to keep a track on me. At the BRI, 19 we only ever saw Helen Stratton, we did not come into 20 contact with any other nurses at all. 21 Q. You say that you did not receive any counselling and you 22 had no-one to talk to about your worries and concerns. 23 This is despite being in one or other of the three 24 hospitals for 10 days. 25 When you saw Helen Stratton, did you understand 0053 1 her role to be counselling or not? 2 A. No, I was given to believe that she was actually just 3 a contact, a mediator, between the operating theatre. 4 She was going to tell us what would happen, the 5 operation, the anaesthetists, telling us what time 6 Thomas would be going down to the theatre. She showed 7 us the room, the ward where Thomas would be in 8 overnight, and she showed us around the Special Care 9 Unit and explained that Thomas would be in there for 10 some time recovering after the operation. 11 Q. So you had been shown by her what was where in the BRI? 12 A. That is right. 13 Q. And you had an idea what you might expect when Thomas 14 came out of his operation? 15 A. That is right. 16 Q. So far as counselling at the Children's Hospital or the 17 Maternity Hospital are concerned, did you ever see 18 anyone called Helen Vegoda? 19 A. Yes, we did see Helen Vegoda. She saw us once in the 20 Sick Children's Hospital, and she -- because Martin was 21 self-employed as I say and he had to go back to Devon, 22 she actually helped us financially with I think 25 at 23 the time. She took us once to our room in the Sick 24 Children's Hospital, and chatted to us and she had 25 pictures on the wall of other children from the Heart 0054 1 Foundation. 2 I was not really clear that she was a counsellor, 3 to be honest. I thought she was a very kind lady who 4 sat down and listened to how we felt, what problems we 5 were having in the hospital. She asked us if we were 6 comfortable. I was not aware that she was actually 7 a counsellor. 8 Q. So she was someone who was obviously official? 9 A. That is right. 10 Q. And you found it useful? 11 A. I thought she was a very kind person, as I say, and it 12 was useful -- it was nice to see her and she did help us 13 out, but I think in retrospect that I needed to see 14 a counsellor more on a regular basis because I spent 15 a lot of time on my own and apart from medical help 16 I had nobody really to talk to about how I was feeling 17 at the time, and I was very isolated. Although my 18 family came up from Devon for two or three days and 19 Martin came back after a couple of days, there were 20 times that I spent a lot on my own with Thomas. 21 Q. So again, in retrospect, what do you think could and 22 should have been done that was not? 23 A. I think daily somebody, a counsellor, should have come 24 and visited me and asked me how I was coping with Thomas 25 and if there was any help that I needed, and also to 0055 1 talk to me about how I felt and ask me perhaps probing 2 questions like how was I coping with looking after 3 Thomas; did I find it alarming with all the equipment 4 around me, which I did; did I have enough support; what 5 sort of things I was worried about; how I felt, really. 6 Q. It is obvious from what you have said that at least one 7 of the nurses took a considerable interest in Thomas and 8 she and you -- it was a she, I take it? 9 A. Yes. 10 Q. Got on well? 11 A. Yes. 12 Q. So did you talk about your worries and concerns to her 13 or someone in her position? 14 A. Not really, because having sat in there, I was aware 15 that they were all very busy, they were very 16 short-staffed, the nursing staff in there. There were 17 a lot of sick babies in the unit. Obviously all of them 18 in their own way were as sick as Thomas and often there 19 were alarm bells ringing in different units and they 20 were always under pressure, so you could only talk very 21 quickly with them, and that was generally motherly sort 22 of things that you do about your child. But there was 23 never any time to sit down and talk about how I was 24 feeling at the time, and coping. 25 Q. Would they have appreciated, do you think, how alone and 0056 1 concerned you felt? 2 A. No, I do not think so. 3 Q. You describe the cubicles in the Children's Hospital and 4 the effect of those cubicles to make you feel more 5 isolated. Can I go on to paragraph 11, and just scroll 6 that up on to the screen? You say there, you complain 7 about the information or lack of it, rather, that you 8 were given. What I want to do now is to find out what 9 was said to you and how you think it should have been 10 handled and what your criticisms are that you summarise 11 in paragraph 11. 12 When you first came to Bristol, did you see 13 a doctor to talk about why Thomas was there and what was 14 wrong with him? 15 A. Yes, initially when we got to the Sick Children's 16 Hospital, we saw Dr Joffe right away. He performed 17 a heart scan to confirm Thomas's medical condition, 18 which had already been diagnosed in Exeter, but he 19 actually confirmed that Thomas had transposition of the 20 great vessels. 21 Q. Can we have a look, please, at medical report 2510/59? 22 My screen first, please. 23 This is from the nursing notes. It is a nursing 24 care plan. It is dated 5th July, so a couple of days 25 after you come to Bristol. "The patient's problems, 0057 1 family. Thomas's parents need to be kept up to date 2 with his condition and treatment." 3 Stopping there, your need was recognised. That 4 was a need you had, was it? 5 A. Yes. 6 Q. The aims: "For parents to feel as relaxed and reassured 7 as possible." 8 Stopping there, how far was that achieved? 9 A. I would not say I felt relaxed. I do not think, to be 10 fair, we could have, in that situation -- 11 Q. I think it says "as far as"? 12 A. I think it would be fair to say that we had every faith 13 in them at Bristol that they seemed to have all the 14 knowledge and expertise that we had hoped for and we had 15 no reason to doubt their abilities. 16 Q. The next sentence: "For parents to be as involved as 17 possible in Thomas's care without feeling intimidated." 18 A. Yes. In the Sick Children's Hospital, they did actually 19 move Thomas out of an incubator into a cot, in order 20 that I could take him out most days and hold him, so 21 I think they were thinking of me as a parent, that 22 because I was in there every day, I could get closer to 23 Thomas and spend more time with him. So I think they 24 did actually consider my feelings at that time. 25 I just feel that there was a lack of -- as 0058 1 I mentioned earlier, that there was nobody actually to 2 sit down with me to find out how I was feeling about the 3 situation and how I was coping mentally with having 4 Thomas there. It was a tremendous shock. As I have 5 said before, we had no idea that Thomas was poorly at 6 all, so within 24 hours he had gone from a normal 7 maternity hospital into a unit with monitors and alarm 8 bells ringing, and it was quite distressing and 9 confusing for us both as parents, really. 10 Q. I think it was Dr Joffe, the first doctor that you saw? 11 A. That is right. 12 Q. Did he describe what sort of operation Thomas was going 13 to have? 14 A. He described two operations. He drew a diagram. He 15 said that one of the operations -- he described the 16 switch operation first of all, which had to be done in 17 the first 14 days of birth. That is because the heart 18 changed after 14 days. He said that the switch 19 operation, when successful, meant that Thomas would have 20 a normal life, there would be no further operations. 21 The other operation that he described as at 22 18 months, which in layman's terms, he said, was 23 described as "extra plumbing", an extra bit of tube to 24 rectify the fault, but that Thomas would have to have 25 further operations as he grew up, obviously when the 0059 1 heart got bigger. 2 Q. Did he say which of those two operations Thomas was to 3 have? 4 A. He said it was for Mr Dhasmana to decide what 5 operation. He did say that the switch operation was 6 quite a new operation; that they had been performing it 7 for two or three years, but they were very pleased with 8 the success of that operation. 9 Q. When he said they were very pleased with the success of 10 the operation, did he give you any more details? Did 11 you ask for any more details of what that meant? 12 A. We did not ask for any more details at the time. We 13 assumed when we spoke to Mr Dhasmana we would raise 14 those sort of issues. 15 Q. You did, I think, hear, before you saw Mr Dhasmana, that 16 he had decided to perform the arterial switch operation? 17 A. Yes. Dr Joffe had said that he had spoken to 18 Mr Dhasmana when he came back from his holiday, and that 19 he had decided to perform the switch operation and we 20 were transferred that afternoon, about 4 o'clock, to the 21 BRI, for Thomas to be operated on the following morning. 22 Q. When you arrived at the BRI, what happened? Who did you 23 see? 24 A. When we got to the BRI, we first of all saw Helen 25 Stratton, who took us into the ward where Thomas was. 0060 1 There were two other children that had either had heart 2 operations or were due to have them. They were toddling 3 around with their families and there was a small bed for 4 Thomas. We were also taken around that floor and there 5 were mature cardiac patients in there as well, which 6 I found rather strange. I had assumed it was going to 7 be a hospital for children on that level. 8 Q. By "strange", how did you react to it as a parent? 9 A. I found it a bit alarming that there were -- that the 10 babies were not separate or the children were not 11 entirely separate from adults: more alarming when we 12 went into the Special Care Unit, because that was not 13 screened off in any way, and everything was very 14 cramped, and there were very sick mature people in bed. 15 Obviously had Thomas gone as far as special care, it was 16 evident he could be right next-door to an adult who was 17 critically ill. I never imagined it to be that way. 18 I was assuming that it was going to be similar to the 19 Sick Children's Hospital, where it was a dedicated ward 20 to children and babies. 21 Q. Paragraph 7 of your statement is page 3. You call Helen 22 Stratton the "nurse in charge". That is how you saw 23 her, was it? 24 A. Yes. I thought she was the nurse in charge of that 25 cardiac unit. 0061 1 Q. Her official title was Cardiac Liaison Nurse rather than 2 nurse in charge. Was that ever explained to you? 3 A. It might have been. I cannot honestly remember. 4 I suppose she was a liaison nurse. I just assumed that 5 she was in charge, her role was to liaise between the 6 parents and the consultant. 7 Q. And you have described there going to see Mr Dhasmana. 8 Tell me about that. I know you put it down in the 9 statement, but in your own words, from what you 10 recollect. 11 A. We went to see Mr Dhasmana the evening prior to the 12 operation. That must have been about 6-ish. It was 13 a very brief consultation; it was less than half an 14 hour, I would have said. He again drew us a diagram of 15 the operation and we asked him -- I asked him -- what 16 the chances of success were for Thomas with this 17 operation. He said that Thomas was a small baby -- he 18 was 6 pounds 4 -- and that it was a very serious 19 operation. Then he went on and said -- 20 Q. If I can just ask you to pause there for a moment, when 21 you said "the chances of success", what were you 22 thinking of? 23 A. I knew it was a big operation, but I wanted to know 24 whether Thomas was likely to survive, what the chances 25 of his survival were. 0062 1 Q. So that is what you were asking, really, about survival? 2 A. Yes. 3 Q. That is when he said, "He is a small baby"? 4 A. Yes. 5 Q. What else was said, then, by him? I am sorry, I cut you 6 off there. 7 A. He actually diverted from my question and said that only 8 one child had had to come back to him to receive further 9 surgery after the switch operation. 10 Q. What did you think he meant by that? What information 11 was he giving you? 12 A. I had no idea at the time. I felt he did not answer my 13 question and I did not really know how to follow it up, 14 I suppose, when I look back. 15 Q. He said only one child had had to return to surgery. 16 What did you think had happened to the others, at the 17 time? 18 A. I had assumed they had all survived because we were led 19 to believe that the switch operation, when successful, 20 they would never have to have further surgery, so 21 I assumed what he was saying to us was that sometimes it 22 did mean, you know, in one instance a child had had to 23 come back and have further surgery, but the rest had 24 been fine; like we assumed that Thomas would have been 25 fine after the operation. 0063 1 Q. And you signed a consent form at that meeting, did you? 2 A. Yes. 3 Q. What were the main things in your mind as to why you 4 wanted the operation for Thomas? 5 A. We assumed that we had no choice; that Thomas was very 6 poorly and he desperately needed the switch operation. 7 Dr Joffe had given us no reason to doubt the abilities 8 of Mr Dhasmana and everybody had been quite positive 9 about the switch operation. On that basis, we assumed 10 that we had left Thomas in the best possible hands to 11 have the switch operation. 12 Q. Dr Joffe had told you it was a new operation, you have 13 already mentioned that. 14 A. That is right. 15 Q. Did you ask, or think of asking, how many such 16 operations had been done? 17 A. No. When he told us that it was a new operation, he 18 said that they were pleased with the success rate at 19 that time. When we saw Mr Dhasmana, we had no reason to 20 doubt that it was not the best possible place for the 21 operation to have been carried out. In retrospect now, 22 it is evident, and we feel quite strongly, that what 23 Mr Dhasmana should have said at that point in time was 24 that it was indeed a serious operation, the switch 25 operation, but they, at Bristol, did not have the 0064 1 expertise to carry out that operation, and Thomas's best 2 possible chances for survival would have been at another 3 hospital. At that point, we did not know which 4 hospital, but we both felt strongly that it was up to 5 them to advise us where to take Thomas to have the best 6 possible chance of a successful operation. 7 Q. This is very much hypothetical and it is very much 8 looking back at it, but suppose something had been said 9 to you like: "Three out of every four operations, sadly, 10 does not succeed. You have to realise, it is a very 11 serious operation and you should be under no illusion as 12 to the prospects." 13 If something like that had been said, just that, 14 would you have asked any further question, do you think? 15 A. I think, unless they could have actually given us 16 a comparison, telling us the results of Bristol would 17 have meant nothing to either one of us. I mean, if they 18 had said that three out of four children had died in 19 Bristol, if they had said that had happened throughout 20 the country, then we would have had no choice but to 21 have given our consent and hope for the best in 22 Bristol. But if they had actually said that three out 23 of four children die in Bristol but three out of ten 24 children have been lost in Birmingham, then we would 25 have stayed on the motorway for the further half an hour 0065 1 and the outcome might well have been different. 2 Q. Again, just to examine and push you on this, at this 3 stage Thomas was obviously ill? 4 A. Yes. 5 Q. Had he had any difficulty breathing? 6 A. Immediately when we were admitted to the Sick Children's 7 Hospital, he had stopped breathing until they actually 8 got him on some drugs -- I think it was Prostin, I am 9 not sure. Once he was stabilised, he seemed to be 10 okay. Later, when Martin and I had consulted the 11 solicitors and had medical records down from Bristol, we 12 found that there were no other complications with 13 Thomas, other than the switch. 14 Q. Looking at it as a parent, and from what you knew at the 15 time -- here was your son, sick and ill in a hospital 16 where an operation could be attempted -- do you think 17 you would have taken him out of the hospital in an 18 ambulance or in your car and taken him two, three, 19 four hours, when time was critical, perhaps, down the 20 motorway to Birmingham or London, or wherever? 21 A. I suppose the thing is, you can argue it that perhaps 22 when he was diagnosed in Exeter, should we have been 23 referred to Bristol in the first instance? I mean, if 24 it was the case that there was a better cardiac unit in 25 Birmingham, then it would have been half an hour extra 0066 1 for us from Exeter. I think Thomas was stabilised for 2 10 days in Bristol. He actually did seem to improve. 3 As far as I was concerned, he looked a much better 4 colour when he was in Bristol. He was starting to take 5 feeds after about seven days -- I was feeding him 6 myself, so he was actually taking breast milk and he was 7 actually stabilising quite a lot. So it would have been 8 up to the medical staff to have told us whether Thomas 9 could have survived a journey by ambulance or air 10 ambulance to another hospital. 11 So we would have expected that information from 12 them, but in retrospect, I think perhaps we should have 13 avoided Bristol all together and been sent to Great 14 Ormond Street, Birmingham, wherever. 15 Q. One of the points you want I think particularly to make 16 is that you feel very strongly -- and perhaps it is 17 obvious from your last answers -- that the operation 18 should never have taken place at Bristol at all on 19 Thomas? 20 A. Yes. 21 Q. Is there anything more you want to tell us about the 22 reasons why you feel so strongly about that that you 23 have not already covered in what you have said? 24 A. No. I think possibly I have covered it all. I feel 25 that Mr Dhasmana in particular was not -- he did not 0067 1 have the expertise to carry out this particular 2 operation on young babies, and what we know now is that 3 he was quite unsuccessful on young babies; and to 4 a certain extent, they were being used as guinea pigs. 5 Q. Obviously you rely for this on information which you 6 have discovered some time since? 7 A. That is right. 8 Q. You describe, after that meeting, how you spent the rest 9 of the time in the BRI and you tell us about the day of 10 the operation, paragraph 9 of your statement, and the 11 information that you were given during the progress of 12 the operation. 13 Do you have any complaints about the amount of 14 information that you were given during the operation, or 15 the way in which that information was given to you? 16 A. No, not during the operation because I think Martin and 17 I had been advised to leave the hospital and call back 18 at 3 o'clock to see what the progress was, so we did try 19 to get out and try and think about something else, for 20 the day. 21 Then, when we came back and saw Helen Stratton, 22 she had told us that she could not get Thomas off the 23 bypass machine. But this was not unusual. This quite 24 often happened in heart operations. She told us to call 25 back an hour later and gave us the same answer. 0068 1 Then the third time I think it was Mr Dhasmana had 2 come back and said that Thomas had had a massive heart 3 attack and he was not able to maintain his blood 4 pressure, I believe. 5 Q. You obviously were very upset at the news. Were you 6 asked whether you would wish to see Thomas? 7 A. Yes. Mr Dhasmana seemed quite distraught when he came 8 back and told us. I think he was actually quite tearful 9 at the time. I think Helen Stratton came in and said, 10 did we want to go and see Thomas, but to me and Martin, 11 the thought of going down to the theatre and I suppose 12 the sight of blood, we did not want to go down there; we 13 preferred to try and remember Thomas as he was as we had 14 taken him down there that morning. 15 Q. Were you here this morning when we were told about an 16 almost indecent haste to push a parent out of the doors 17 following a bereavement? 18 A. Yes, I think I caught the tail-end of that. 19 Q. How far does that accord with what happened to you? 20 A. That is exactly the same. I think I would probably say 21 we were there about half an hour with Mr Dhasmana and 22 Helen Stratton in total, and we were told that most 23 parents in the same situation, most of them preferred to 24 leave the hospital immediately and return home, so we 25 felt under pressure, then, to leave and we were still, 0069 1 the pair of us, in shock, but you did have that feeling 2 that you wanted to run away. But looking back, I think 3 that it was quite dangerous for Martin to get in the car 4 and drive for an hour and a half back to Devon. 5 Q. Because of what was on your mind? 6 A. Well, I think we were just in shock. I mean, one minute 7 we had been admitted to the hospital with a baby, and 8 the next minute we had lost him. We both felt 9 completely lost, I think, and in shock. I think we 10 needed to sit down and get our thoughts together and 11 perhaps, I think that would have been the time to have 12 had a counsellor, to sit down with the pair of us. 13 Q. So what you would have wanted was time, was it? 14 A. Yes. 15 Q. And someone to talk to who was experienced? 16 A. Yes. 17 Q. Again in retrospect, where do you think that should have 18 taken place? 19 A. I think I would have liked to have been away from the 20 hospital, even if it was just across the road, some 21 distance, and just time to have a cup of tea and time to 22 get your thoughts together as to what was going to 23 happen next, really. 24 Q. Did anyone discuss arrangements with you in terms of 25 postmortem or funeral? 0070 1 A. I think it was Helen Stratton, because that is the only 2 person we actually spoke to there, had said that there 3 would be a postmortem. This was normal procedure. She 4 also said that Mr Dhasmana would contact us, probably by 5 letter, on our return to Devon, but we never heard from 6 him. We never received any letter. 7 Q. So when you left, that was it, was it? 8 A. That was the only contact we had. 9 Q. Was anything said to you about the need or possibility 10 of keeping Thomas's heart? 11 A. No. It was just never mentioned. 12 Q. How have you reacted to the news that a number of hearts 13 were in fact kept, following cardiac surgery? 14 A. We found that very distressing. In our own personal 15 situation, we did not want to know whether Thomas's 16 organs had been retained because that would have been 17 too distressing for both of us. 18 Q. Thomas came back to you for burial? 19 A. That is right, yes. 20 Q. There are one or two documents which I would welcome 21 your help with and comments on, as to how far they 22 matched up to your own experience. 23 Can we have a look, please, at UBHT 136/35? This 24 is an information document for parents. Do you remember 25 seeing this or anything like it? 0071 1 A. No. 2 Q. If you look down the page, "Parent facilities", this is 3 what the UBHT were saying as to the Bristol Children's 4 Hospital: "Whichever ward your child is on, you would be 5 welcome to stay with us as well. We have a variety of 6 facilities for parents, including rooms to stay in." 7 You felt welcome, did you, at the Children's 8 Hospital? 9 A. Yes. I think the Children's Hospital, although I think 10 the facilities there looked very temporary and were not 11 very accommodating, the actual unit that we stayed in, 12 but the staff there were very helpful as far as they 13 could be. 14 Q. You were not at the Infirmary for very long. Did you 15 notice any difference as between the Children's Hospital 16 and the Infirmary? 17 A. The accommodation and facilities were newer and more 18 welcoming, but I would say it was not as welcoming. 19 There was not as much contact with people. You felt 20 more isolated at the BRI. 21 Q. If we have a look at UBHT 167/76, this is a document for 22 reference purposes for others, which begins two pages 23 earlier. It is the Annual Report 1989 in respect of 24 Bristol cardiac surgery, so it is some three years 25 earlier, that this was published. One assumes that 0072 1 standards of patient care should have improved over the 2 period. 3 At the end of the first paragraph there, the last 4 sentence, talking about Ward 5: 5 "Traditionally the nursing team has played a major 6 role in promoting a liberal and happy atmosphere for 7 patients, families and staff. In so doing, it has 8 created a corps d'esprit which is one of the strengths 9 of the unit and the envy of others." 10 Q. Accepting you were not in Ward 5 for long, how far is 11 that sentiment reflected in your experience? 12 A. I do not feel it was a happy atmosphere. I suppose, to 13 be fair, no hospital would have been a very happy 14 atmosphere in the circumstances, but because it was 15 mixed with adults, it seemed a very strange sort of 16 layout, to me. I expected it to be a dedicated ward to 17 children, and the only contact we had was with Helen 18 Stratton and that seemed very to the point. We were 19 shown the rooms, where the special care was, where the 20 toilets were, where Thomas would be, and then an 21 anaesthetist came to explain what time he could be 22 taking Thomas down to theatre and such like, but apart 23 from that, you were on your own, really. 24 Q. The last document I wanted to ask you about is 25 DOH 4/16. Again, for the purpose of identification, 0073 1 this is a draft agreement between the Bristol & Weston 2 Health Authority and the Bristol Provider Unit, so it 3 comes from 1990 or early 1991. If we can go down to 4 paragraph 11.7, it is dealing here with neonatal care 5 rather than cardiac care, but 11.7: 6 "There should be sensitive arrangements for 7 helping parents cope with handicap or bereavement and 8 access to counselling for both parents and unit staff." 9 To what extent do you feel there were sensitive 10 arrangements for helping you cope with your bereavement? 11 A. I do not think there were any sensitive arrangements. 12 I think, as I said before, we were hurried out of the 13 BRI. I think we should have had access to counselling 14 there, and also on our return to Devon, perhaps followed 15 up with some counselling, but I do not think we were 16 dealt with in a sensitive way at all, once we had 17 learned that we had lost Thomas. I felt very much like 18 it was "Quick, pack up and go home. We are finished 19 with you" and that was that, really. Our feelings and 20 views were not taken into account. 21 MR LANGSTAFF: I do not know whether Valerie Mandelson would 22 like any information which may assist her so she can 23 help the Inquiry. If so, I would now invite you to ask 24 what you would wish. 25 MRS MANDELSON: I was just wondering whether you were given 0074 1 any details whatsoever -- you said about wanting some 2 support when you got home: were you given any 3 information about local services that may be of help, or 4 assistance that you could contact? 5 A. When I got home, my midwife I had had previously came up 6 to see me, because she had obviously got to know me 7 quite well. Although she was not a qualified 8 counsellor, she came to see me and gave me a leaflet for 9 some organisation that escapes me at the moment, to 10 contact. But at that point, my husband was very 11 supportive, and also my parents, so I did not feel the 12 need to actually see somebody at that point in time, or 13 to actually ring. But in retrospect, I think that 14 I should have had somebody who was independent of my 15 family, to have actually come and seen me and discussed 16 how I felt. I did return to work quite quickly, because 17 on coming back from the BRI, it was two months later and 18 I found I was pregnant again, and rather than be 19 distressed during this pregnancy, the second pregnancy, 20 I felt that it was best to go back to work full-time and 21 try and concentrate on the next baby. 22 Looking back, I do not think I was ready to return 23 to work, and also, I had needed help in that time. 24 MR LANGSTAFF: I have asked you a number of questions. 25 I have nothing more that I want to ask you, but is there 0075 1 anything that you would wish to add, either to emphasise 2 what you have already said, or because you think we 3 ought to know, anyway? 4 A. No, I think you have brought out the point, that we feel 5 very strongly we should have been sent to a hospital 6 where there was greater expertise. We should never have 7 been referred to Bristol in the first instance. 8 MR LANGSTAFF: There may be some questions from the Panel. 9 THE CHAIRMAN: Professor Jarman? 10 EXAMINED BY THE PANEL 11 PROFESSOR JARMAN: I just wondered if you got any support 12 from your general practitioner at all? 13 A. Yes, my GP had seen him quite often and come around to 14 see me, but he did not actually refer me to 15 a counsellor. There is now a counsellor that is 16 attached to the practice, but that has been quite a new 17 thing. I was actually offered the service about 12 18 months ago, when I had taken my other children for 19 a check-up. They broached the subject and offered 20 counselling. 21 THE CHAIRMAN: Mrs Pottage, we have no more questions. 22 Mr Lissack? 23 MR LISSACK: No, thank you very much. 24 THE CHAIRMAN: I am grateful. If I may put words into 25 Mr Langstaff's mouth, there may be other things that 0076 1 come to your mind that you would like to tell us about, 2 even though you say you have brought to our attention 3 all the things currently on your mind. If there is 4 anything else, please know you can let us know, either 5 by writing or through your advisers, whatever, we will 6 hear and we are anxious to hear anything you may have to 7 say. For the moment, on behalf of Mr Langstaff, and 8 certainly on behalf of the Panel, thank you for coming 9 to tell us Thomas's story. We are very grateful to 10 you. We are much obliged to you. 11 MRS POTTAGE: Thank you. 12 MR LANGSTAFF: Thank you very much. 13 (The witness withdrew) 14 MR LANGSTAFF: Sir, our next witness, Mrs Johnson, is 15 scheduled for this afternoon. May I be bold enough to 16 suggest that we have a break until 2 o'clock, or just 17 after? 18 THE CHAIRMAN: I think that will be right. Shall we adjourn 19 now and reconvene at 2 o'clock. 20 (1.15 pm) 21 (Adjourned until 2.00 pm) 22 (2.15 pm) 23 MR LANGSTAFF: Could we have Julie Johnson, please? 24 Mrs Johnson, I think you have followed our 25 proceedings from time to time. You know that at the 0077 1 beginning we take an oath. Will you please stand for 2 the oath? 3 MRS JULIE JOHNSON (AFFIRMED): 4 Examined by MR LANGSTAFF: 5 Q. You are Julie Johnson? 6 A. Yes. 7 Q. Can we have a look at your statement on the screen: 8 178/1 is the covering sheet. Page 2 is where the text 9 begins. If we turn to page 22, that is your signature 10 at the end, is it? 11 A. That is right, yes. 12 Q. And the contents of that statement are true? 13 A. Yes. 14 Q. You know, because I think you were here for part of this 15 morning, that the focus of today and much of this week 16 is on counselling, information and support. 17 A. That is right. 18 Q. And you are going to tell us about your son Max, who was 19 born on 29th November 1993, and what happened to him. 20 Although you give us a lot of detail in your statement, 21 for which I thank you, you will appreciate that we will 22 not go into every detail, and no disrespect is 23 intended. 24 A. I understand. 25 Q. When did you first become aware that something might not 0078 1 be all right with Max? 2 A. It was the day that he was born. He was born just after 3 midday in St Michael's Hospital. I was put on to a ward 4 and he was not drinking a lot of milk and he seemed to 5 be making a grunting sound so I rang the bell and got 6 the midwife to have a look. By the time the midwife had 7 come in he had stopped grunting, so she just left and 8 went again. So it must have been about half 4 in the 9 afternoon by then, just hours after his birth. 10 Q. Max was not your first child? 11 A. He is my second. 12 Q. When did you first understand what was wrong with Max? 13 A. It was a couple of days later. He was taken to SCBU 14 that evening, and it was the Wednesday I think it became 15 definite that there was something wrong with his heart. 16 I think it was when we were introduced to Dr Alison 17 Hayes from the Children's Hospital. 18 Q. That is Wednesday 1st December, is it? 19 A. That is right. 20 Q. What did Dr Hayes say to you about the nature of Max's 21 problem? 22 A. She took Max to the Bristol Children's Hospital to 23 perform a cardiac catheterisation and have an echo to 24 look to see what the problems were. When she returned 25 that day she said he needed to go back the following 0079 1 day, the Thursday, for a balloon atrial septostomy. 2 Q. Did he? 3 A. Yes. 4 Q. What did you understand to be the results of the 5 septostomy? 6 A. Max had transposition of the main arteries, but it was 7 slightly complicated because I was told that both 8 outlets came from the right ventricle. He also had 9 a hole in the bottom of the two chambers. 10 Q. Did anyone describe it to you as a "double outlet right 11 ventricle"? 12 A. On occasions. Transposition of the main arteries with 13 complications, but very rarely was it referred to as an 14 actual switch. 15 Q. At what stage did you understand what was likely to 16 happen? 17 A. I think it was the same day or the following morning 18 after the balloon atrial septostomy. She said they had 19 a clearer picture of Max's heart. He needed to have 20 open-heart surgery as soon as possible, but because of 21 the size of the child, it would be better to wait until 22 he was a year older, so they were going to patch him up 23 temporarily until he got older and stronger, and then he 24 would have a second operation and that would be it for 25 life. So he was going to be patched up temporarily with 0080 1 closed-heart surgery, and then, about a year later, he 2 would have the actual transposition. 3 Q. So that was what would happen in December of 1993? 4 A. That is right. 5 Q. It was later in 1994, was it, that he came back for 6 a second operation? He had a first operation in 1993, 7 a second operation in 1994? 8 A. Yes, that is correct. 9 Q. So far as the first operation was concerned, where was 10 that performed? 11 A. It was in the Children's Hospital. Bristol Children's 12 Hospital. 13 Q. The second was at the BRI, was it? 14 A. That is right. 15 Q. So you had experience of the special care baby unit in 16 St Michael's? 17 A. Yes. 18 Q. Experience of the Children's Hospital? 19 A. Yes. 20 Q. And you had experience of the Royal Infirmary? 21 A. Yes. 22 Q. From your perspective, how did they compare? 23 A. The special care baby unit, the staff were very good. 24 I had obviously just given birth to the child and within 25 hours he was in SCBU and they gave me a room there 0081 1 within the hospital and said I could stay as long as 2 I liked. 3 When I met Dr Hayes she said the surgery, the 4 closed-heart surgery would be in the Children's 5 Hospital, which was completely opposite, the building 6 opposite, but the SCBU staff said I could stay there if 7 I wanted to in one of their rooms rather than move to 8 the other. 9 In SCBU they had a key nurse system which worked 10 very well. In the first days when Max was being 11 diagnosed it was difficult to take in all the 12 information. I had a nurse stay with me who was Max's 13 key nurse. When the consultant left she would say "Did 14 you understand all this?" and if there was something 15 I was not sure about she would go through it all with 16 me. I found that very helpful. 17 Q. The key nurse was the same person all the time, was it? 18 A. Yes. There were a group of nurses that did the same 19 care for the same patients, but one particular nurse, 20 because the one that always came and explained things 21 and if there was a problem, I would go back to her. 22 When I got to the children's ITU, they had 23 a similar type system, but probably because there were 24 a lot more babies there you did not necessarily see the 25 same nurses very often. There was a key group of 0082 1 nurses, all the nurses came under "green", and then 2 somebody else would have a different set of nurses under 3 "blue" or things like that, so there would be someone 4 within that group you could actually talk to if there 5 was a problem. 6 Q. Did you find communication easy, or difficult? 7 A. Relatively easy, yes. I did not have too many concerns 8 when he was in -- to me the actual closed-heart surgery 9 itself was the problem, and I thought the time after, 10 once he had got over the surgery, I was not too 11 concerned about him, he seemed to be progressing quite 12 well, so there was not very often I needed to ask 13 anything during that time. 14 Q. So you have now covered SCBU and you have covered the 15 Children's Hospital. What about the BRI? 16 A. The BRI was very different. When I arrived we met 17 a nurse, Kathy Warren, I think it was, on the first 18 day. I did not necessarily see her for a little while 19 after. I did not know many of the nurses at all. 20 Before Max went for surgery, we were on a little ward 21 which was just a couple of children, either going to 22 surgery or recovering from surgery. We were all put in 23 the same room. I did not really know any of the nurses 24 in particular. There was a play specialist there, but 25 then they went home at weekends, so we were there in the 0083 1 evening. 2 Q. You have mentioned a name: Kathy Warren? 3 A. Yes. 4 Q. So obviously you knew a nurse well enough to not only 5 know her name but remember it? 6 A. Yes. 7 Q. Why her in particular? What about her makes you 8 remember her? 9 A. Because she was there just after Max's surgery, when he 10 came up from surgery. She was there for a little 11 while. She was not actually looking after him that 12 evening, but she was there when he first came up, and 13 I had a few concerns about the surgery that I expressed 14 to her as well. Like all the nurses there she did not 15 have an answer to most things, but I remember her in 16 particular. She also came to my house afterwards, 17 actually. 18 Q. So you developed a relationship with her? 19 A. Yes. 20 Q. Despite your, if we put them in rank order -- 21 A. That was one. There was not a combination. There were 22 two or three more, I am not saying all the nurses were 23 the same. 24 Q. Is what you are saying that there was a variety of 25 nursing approaches at the Royal Infirmary? 0084 1 A. Yes. 2 Q. Some of which you found more helpful than others? 3 A. Yes, exactly. 4 Q. Whereas at the Children's Hospital there was a team 5 approach which you found generally helpful, but what you 6 found most helpful, speaking personally, was the key 7 nurse with whom you related well from the Maternity 8 Hospital? 9 A. Yes, that is right. 10 Q. Do you remember her name? 11 A. Julie. Only the first name. We did go back to see her, 12 actually. 13 Q. Following the operation in 1993, the closed-heart 14 surgery at the Children's Hospital, how long, roughly, 15 did Max stay at the hospital? 16 A. Three weeks. We came home a week before Christmas. The 17 surgery was on 16th December. 18 Q. During that time, did you meet anyone who was there to 19 offer you counselling, or some? 20 A. I met Helen Vegoda a couple of times. She would ask me 21 and my husband if we wanted to go back to her office for 22 a cup of tea or something. 23 Q. Did you take her up on it? 24 A. A couple of times, yes. 25 Q. Did you find the contact helpful or not? 0085 1 A. I was not particularly bothered at the time. I did not 2 particularly need that sort of help at the time. 3 Q. Because things were okay and progressing well? 4 A. Exactly, yes. 5 Q. If you had needed her, would she have been there for 6 you? 7 A. Yes, I think so, yes. 8 Q. So he was back at home just before Christmas 1993? 9 A. Yes. 10 Q. And does not come in again for surgery until the middle 11 of the following year? 12 A. That is right. 13 Q. Tell me how it came about that it was realised that he 14 needed surgery then. 15 A. Well, when I came home the week before Christmas, I had 16 an outpatients appointment in the January, one of the 17 first clinics after Christmas, where I had to see the 18 cardiologist, and two weeks after that, I had to see 19 what should have been Mr Dhasmana, in fact it was his 20 Sister I saw, just to see how Max had got on after he 21 got home, really. I went to outpatients every two 22 weeks, because we lived in Bristol it was convenient, 23 just to keep an eye on what was happening, and also Max 24 went in for a catheter in March 1994. 25 Q. In April, did you see Dr Hayes and then Mr Dhasmana? 0086 1 A. That is right, yes. As a result of the catheter in 2 March, they decided I should see both Mr Dhasmana and 3 Dr Hayes. 4 Q. What did you discuss? 5 A. Further surgery. I knew he was going to have further 6 surgery, but the catheter said that the first, the 7 closed-heart surgery would not last him a year. He was 8 basically patched up and Dr Hayes felt that it would not 9 last that long and he needed to go in more urgently than 10 they had anticipated. So I had to speak to Mr Dhasmana 11 about this. 12 Q. Do you recall meeting Mr Dhasmana for that first 13 consultation? 14 A. Yes, I do. 15 Q. What was said? 16 A. He just said that he had hoped that Max's surgery would 17 have lasted a year, because he would be older and 18 stronger, but Dr Hayes had said, after the catheter, 19 that Max was suitable for the switch. 20 There was some talk that the part of the artery 21 that was on -- because both arteries were coming from 22 the left, there was some talk it might be more committed 23 to the right by March, so it was more of a switch, but 24 it was never very clear whether that was the case or 25 not. Mr Dhasmana said he needed open-heart surgery 0087 1 quite soon. 2 Q. What questions did you ask and have answered about the 3 nature of that surgery? 4 A. Dr Hayes had already told us in outpatients there was 5 a risk to Max's life, because of the fact that he had 6 never used the left side of his heart correctly, and she 7 said it was turning to muscle and she was a bit 8 concerned about that. Mr Dhasmana did not seem to be 9 too concerned about that particular aspect; he just said 10 that he would do the surgery quicker than he had hoped 11 for. 12 Q. Were you worried by the risks to Max? 13 A. I never tried to think about it too much, because I did 14 not feel -- we were never given any alternative. He was 15 to have this surgery. After the surgery, we were told 16 he would have a near normal life, so that was that, 17 really. 18 Q. Can I break off there for a moment and ask you to pull 19 the microphone a little nearer to you? You have 20 naturally quite a soft voice, and speaking fairly 21 quickly as you do, it is sometimes difficult for some 22 people to pick up what you are saying. 23 Let us start again. You were going to tell us, 24 you were telling us, about the risks which you 25 understood there were in the surgery; you did not really 0088 1 want to know, I think, is what you are saying? 2 A. Yes. 3 Q. Were you told anything specific about any particular 4 risk? 5 A. Well, Dr Hayes said that there would be a risk up to 6 14 days following surgery, because Max would have to 7 learn how to use the left side of his heart, because he 8 had never used it. Mr Dhasmana said that basically, he 9 would live or die in the operating theatre. He was more 10 concerned with the