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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 actual surgery itself. I queried 11 this but I did not query this in the April, I queried it 12 the night before surgery. 13 Q. What about any of the other possible consequences of 14 surgery? Leave aside life or death; any long-term 15 consequences? 16 A. There is a member of my family that is brain-damaged and 17 I was a bit concerned about any possible brain damage. 18 Mr Dhasmana said it was virtually unheard of; he would 19 either live or die, basically, on the operating table. 20 Q. This was in April 1994? 21 A. April 1994, yes. 22 Q. So that would be, going back to this morning's evidence, 23 within a year of the case of Mrs Pottage? 24 A. Yes. 25 Q. We heard from her this morning. Max was admitted to the 0089 1 BRI on 28th June 1994. When admitted, you, I think, 2 said something about possible organ donation? 3 A. I did. There was a lady anaesthetist who came to see us 4 the evening he was admitted. She said she was not 5 actually in charge of his surgery, she was not the main 6 anaesthetist for him. Her colleague was not there that 7 day, and she wanted to talk to us about the surgery. 8 I said my husband and I discussed before that if 9 anything happened to Max, we would like his organs 10 donated. She said it was a very brave thing to say at 11 this point, two days before surgery, but in the rare 12 case of a child dying, then so many drugs would have 13 been used that only the retinas of the eyes would be 14 worth keeping. 15 Q. Does it follow from your raising the question, that you 16 had at least a fairly good idea that Max might not 17 survive? 18 A. I was prepared for it either way. 19 Q. Shortly after Max came to the Children's Hospital, the 20 day after, was there a particular incident at the BRI? 21 A. Yes. There was a bomb scare on the evening before 22 surgery. My husband and I were there, and my daughter 23 was with us as well. Apparently in the BRI, if there is 24 any such incident, if you are on Ward 5, even though he 25 was not quite in ITU but we were on Ward 5, you had to 0090 1 have one adult per child, so he had to leave the 2 building because of the bomb scare. 3 Q. So the "one adult per child" was no more than one adult 4 per child? 5 A. Yes, exactly, so he had to leave the building and he 6 took my daughter home, I think to my mother to look 7 after. We were meant to meet Mr Dhasmana who was in 8 surgery that day roundabout 4 o'clock, but because of 9 the bomb scare he could not get into the building. He 10 had done surgery at the Children's Hospital and could 11 not get into the building that day. By the time he got 12 into the BRI it was about 6 o'clock. My husband was 13 still out. They had allowed Mr Dhasmana to get in, but 14 not Steve. 15 Q. The bomb scare must have been concerning for you? 16 A. A little bit. 17 Q. Were you able to talk to anyone about your worries and 18 fears that would naturally arise in such a case? 19 A. Only a couple of parents who already had children who 20 had surgery and were in this little room with us, their 21 children had been in and out. I was obviously a bit 22 concerned at the time, and they were saying "Do not 23 worry, he is in the best place, this and this happened 24 to my child". 25 Q. You saw Mr Dhasmana again, before the operation? 0091 1 A. I did, yes. 2 Q. What was said? 3 A. Very little, in fact. He drew very simple diagrams 4 explaining what would happen, literally five minutes. 5 He was a bit concerned about this bomb scare as well, 6 saying he was running late and this sort of stuff. 7 I was also, because Steve was not there, I was thinking, 8 what should I ask? The only thing I could think of at 9 the time was the fact that Dr Hayes had said it would 10 take up to 14 days after, he could die up to 14 days 11 after, is basically what she said to me. He said "They 12 are very pessimistic at the Children's Hospital, we see 13 this much more often, we will know if the surgery is 14 successful within three or four days". So I felt 15 a little more confident after that meeting. It did not 16 last very long. 17 Q. Although it did not last very long, how good a picture 18 do you think you had of what was likely to happen to Max 19 the following day? 20 A. I knew, basically, what he was having done, yes, because 21 we had been to outpatients and discussed it with 22 Dr Hayes on the other occasions. 23 Q. Do you think you understood or had a reasonable 24 understanding of the risks that surgery might involve? 25 A. Mr Dhasmana never gave me any idea of risks. He never 0092 1 gave me a percentage. I never asked, he never told me. 2 Alison Hayes said there was a severe risk to his life, 3 but she kept saying it was because he had never used the 4 left side. 5 Q. When you say he did not say anything about the risks, he 6 was nonetheless saying to you, "Well, he will die on the 7 operating table or survive and we will know within three 8 or four days of the operation whether it has been 9 a success or not"? 10 A. Yes. 11 Q. Just pressing you on it, if it was not a success, what 12 did you expect? 13 A. That he would die. 14 Q. So although he did not mention a percentage, he did 15 refer to a risk in general terms? 16 A. Yes. 17 Q. The day of the surgery itself, looking back on it, how 18 well informed do you think you were about what was 19 happening? 20 A. I think I was reasonably well informed. 21 Q. Did you stay in the hospital, or did you go out? 22 A. We went out. I went out for a little while. When Max 23 had his closed-heart surgery, that was nearly all day, 24 so we were getting quite used to this by then. I was 25 expecting, I think Mr Dhasmana -- one of the nurses, 0093 1 maybe not Mr Dhasmana -- said to ring at lunchtime to 2 see whether Max was up, but it would probably be early 3 afternoon. I think it was about 4, after 4 o'clock, 4 before Max finally came up. But that was similar to his 5 closed-heart surgery and I was expecting it to be a long 6 time. 7 Q. Did you find being out was a time when you could not 8 concentrate on anything? 9 A. Yes. I could have been anywhere, really; it would not 10 have made any difference. 11 Q. But it was better out than in, was it, do you think? 12 A. I suppose so, yes. 13 Q. When you got back, what did you find? 14 A. First of all, I was not -- they made me wait a little 15 while before I went in to ITU. I had never been in ITU 16 at the BRI before. I had been shown around in the 17 evening, but for some reason they said I could not go 18 into the Intensive Care Unit until Max was in there. 19 When I went in there, Max was under a warming blanket, 20 they were just putting him on a ventilator or something 21 like that, and he was on a bed, which was a bit of 22 a shock. 23 Q. So you had not even looked into the ITU at all? 24 A. No. 25 Q. Were you prepared for what you saw? 0094 1 A. Yes, and no. I had seen him in ITU before, at the 2 Children's, so, yes, in one way, yes. But I was a bit 3 surprised because there were obviously adults in there 4 and he was sandwiched between the two adults, and he was 5 on a big bed, and I found that quite uncomfortable, to 6 see this little guy in a big bed. I said "I was 7 expecting him to be in an incubator". Mr Dhasmana said 8 "That does not matter". He was there at the time, he 9 was helping to put him on. "It does not matter", he 10 said. 11 Q. You say, paragraph 29, page 12 of your statement, that 12 you became aware there were definite problems with staff 13 and communication at the BRI. It was quite difficult to 14 find out what was going on. 15 When you say "definite problems with staff and 16 communication", do you mean between them themselves, or 17 between them and you, or what? 18 A. Both really: between them, amongst themselves and no-one 19 really informed us on most things. 20 Q. What problems did you notice amongst themselves? 21 A. The nurses did not seem to write down enough information 22 for when the next nurse came on duty. They were not 23 always quite sure what drug was on at the time, things 24 like that. Sometimes they had to go and ask the Sister 25 of the ward, they had to leave him and go and ask the 0095 1 Sister of the ward and things like that. I do not know 2 whether they had changeover, what I call changeover, in 3 SCBU and in the Children's Hospital. They had specific 4 changeover, all the nurses came up and said "This child 5 is so-and-so and this is what has happened so far today 6 and this is our plan of action". I never saw that. 7 Whether it happened behind the scenes, I do not know. 8 As a result, very little was discussed in front of me 9 about how well my son was doing, or was not doing as it 10 happens. 11 Q. You were there all the time? 12 A. Most of the time, yes. 13 Q. So you noticed the different types of care, the 14 different approaches that different shifts took to your 15 son? 16 A. Yes. 17 Q. What in particular did you notice about care, say, at 18 weekends? 19 A. Weekends, the care declined. I know one particular 20 weekend, I am sure Max was not looked after by 21 a paediatric nurse, because the nurse was about to put 22 some stale milk down his tube and I said "Do not do 23 that, it has been there for days". 24 Q. Down a feeding tube? 25 A. Yes, to feed him. I said "Do not do that, it has been 0096 1 there for days". She got very embarrassed and hurried 2 off and said "I do not really know anything about 3 children", you know, so I was pretty certain she was not 4 a paediatric nurse. I guess it was just who happened to 5 be in on that weekend. Right back when Max had his 6 first closed-heart surgery, even in SCBU, he was waiting 7 for his surgery. Mr Dhasmana was willing to come in on 8 his day off on Saturday to do it, but there was no-one 9 in children's ITU to man the bed. They were all out 10 Christmas shopping, so I was told, so he had to postpone 11 the surgery to the next day. I think weekends, and also 12 Max was in on the Bank Holiday as well, the staff were 13 not always there. 14 Q. What was the Bank Holiday like, by comparison with the 15 weekday? 16 A. The Bank Holiday was in the Children's Hospital again. 17 Basically, Max should have been on the baby ward, the 18 baby unit, a separate unit in the Children's Hospital 19 for the babies, and he was about five months, four or 20 five months, and he was not -- he had to go on the end 21 of a ward. It was almost like on the end of a corridor, 22 really, so they could keep him in overnight for 23 observations. As it happens, he was fine anyway. 24 Q. You were saying the quality of care declined at weekends 25 in the BRI? 0097 1 A. Yes. All the hospitals, I would say. Possibly not the 2 SCBU, but -- 3 Q. You have mentioned one thing at the moment, one specific 4 thing which is the milk episode. 5 A. Yes. 6 Q. Was there anything else by which you measure the 7 decline? 8 A. Basic hygiene was worse in the BRI. Just basic 9 cleanliness. I know over one weekend the nurse came in 10 after a weekend and Max had a lot of bed sores on his 11 neck. She lifted him up and showed them to me. I was 12 quite horrified. I said "Why didn't anybody spot that 13 over the weekend?" Action could have been taken before 14 then, but he was not moved enough, the nurses over the 15 weekend sometimes had a job to cope with the medication 16 for Max, without doing basic nursing skills. 17 Q. You mean you yourself had not noticed the bed sores? 18 A. I had not noticed them, because he was always flat out 19 with his head back down. When this nurse came on, she 20 had picked him up a lot more and moved his position, and 21 she realised on the back of his head and neck there were 22 really quite nasty bed sores. He really had not been 23 moved much over the weekend, to get that bad. 24 Q. Were you ever encouraged to pick him up and move him 25 yourself? 0098 1 A. There was only one particular nurse that did. She would 2 let me try and help with his care as much as possible. 3 Q. If someone had shown you what to do and asked you to 4 help, would you have done so? 5 A. Certainly, yes. There was nothing else for me to do, 6 really. 7 Q. You wanted to do so? 8 A. Yes. 9 Q. The problems as between the staff and you of 10 communication: what were they? 11 A. No-one seemed to know what was going on. Nobody seemed 12 to sort of -- no-one seemed to have any answers to any 13 questions I asked. They would say "You have been sat 14 there all day, go and get yourself a cup of tea". Also, 15 there were lots of discussions -- I was sitting on 16 a chair and there were lots of discussions across the 17 bed as if I was not there. 18 Q. Are you the sort of person, do you think, who does get 19 in the way or not? 20 A. Maybe, yes. I do not know. I just wanted to know what 21 was going on. If someone would have said "Yes, 22 6 o'clock tonight you can come here and Mr Dhasmana will 23 tell you what sort of day he has had, or what we are 24 doing", then that would have been fine. That would have 25 suited me fine. But there was no particular time. And 0099 1 the Children's Hospital at 10 o'clock at night, the 2 doctors always did their rounds and they would get there 3 and say "This and this has happened today, this is our 4 plan of action for the night" and I knew where I stood 5 and thought "That is fine, I can go home or go off to 6 bed". But the BRI was not like that. I would hang 7 around to have a look at the night staff to make sure 8 they knew what they were doing. 9 Q. "Go and get a cup of tea" might be sympathy for you, 10 having been there at the bedside and along comes the 11 nurse to do whatever needs to be done, it is 12 an opportunity for you to have a break, possibly. 13 A. Yes. 14 Q. Was it meant in that sense or not? 15 A. Some, maybe, on occasions. Sometimes it was "Please 16 just go away because I am finding this hard enough to 17 cope with". I am sure some of the nurses felt that way. 18 Q. That was despite your doing nothing, as you saw it? 19 A. That is right, yes. 20 Q. To interfere or make life more difficult, just being 21 there? 22 A. I think it made some of them nervous. I was watching 23 them and it made some of them nervous. The better 24 nurses did not take any notice, they did not seem to 25 mind. Obviously they thought, "I am not doing anything 0100 1 wrong so it does not matter if this lady is watching 2 over me". 3 Q. Again pushing a little on that, were they better nurses 4 because they did not seem to mind, or because you 5 noticed other things about their nursing? 6 A. Because I noticed other things about the care, 7 definitely, yes. 8 Q. After his operation, what sort of condition generally 9 was he in? 10 A. Immediately after, I actually said to the nurse, "He is 11 pink, he has pink fingers and toes". It was the first 12 time in his life, really, he had been pink, he was quite 13 a blue baby. The nurse said "This is the honeymoon 14 period. When they get off the heart and lung machine 15 they are like this for a few hours afterwards. We will 16 find out later on whether he going to be okay". By 17 about 10 o'clock everything seemed fine, bearing in mind 18 he had come out from surgery about 4.30. Maybe after 19 midnight or something I went off to get sleep for 20 a few hours. 21 I came in about half 4 in the middle of the night 22 because I could not sleep, really, and there was an 23 anaesthetist with a green overall on. She was talking 24 to a man in a suit -- I do not know the names of these 25 people. They never introduced themselves. At the BRI 0101 1 they would just appear. They were just discussing 2 things and the nurse came to me and said "We are 3 encountering a few problems with Max". I just sat down 4 and they would discuss things amongst themselves. First 5 of all, one of them went and got me a chair and I just 6 sat there for an hour or so, I was looking at the 7 monitors not really knowing what to do. Then after 8 a while, these people left and the nurse said "He seems 9 to be stabilising" and I went back off to bed. 10 Q. Did anyone explain to you what the problem had been? 11 A. Not at all, no. 12 Q. In looking for information over these few days, did you 13 ever come across someone called Helen Stratton? 14 A. No. 15 Q. Did anyone call Helen Vegoda speak to you? 16 A. I had spoken to Helen Vegoda, not while he was in the 17 BRI. 18 Q. That was at the Children's Hospital? 19 A. And afterwards. She never came down from the Children's 20 Hospital. 21 Q. I think you describe, page 14, how on 5th July, now 22 having been in ITU for a while, Max's heart rate became 23 higher and higher, and you describe Mr Dhasmana being 24 called and a discussion then taking place about how to 25 deal with the crisis that appeared to have arisen? 0102 1 A. Yes. 2 Q. Was there any overall sense of direction as to how to 3 deal with it? 4 A. No. One of the nurses must have called Mr Dhasmana up. 5 He had come up from surgery, I believe. They were about 6 to use the irons. If it had been a few more seconds 7 longer, they would have done it. He said "No, do not do 8 that. Max's blood pressure is low so we will not worry 9 about it. The heart rate will sort itself out". 10 Q. A day or so later, the next day, you describe how the 11 time came to wean Max from the ventilator. 12 A. Yes. 13 Q. You describe how Max was moving in bed and you were 14 worried by the condition that he was in? 15 A. Yes. 16 Q. You spoke to Kathy Warren about it, and then that 17 afternoon, Mr Dhasmana appeared with someone whom you 18 later discovered was Dr Bolsin? 19 A. Yes. 20 Q. Tell me about the disagreement that they then had. 21 A. Max obviously did not do very well off the ventilator. 22 It became obvious, saturation had begun quite low and 23 Mr Dhasmana said "We will have to reventilate him". 24 Then, I know now it was Dr Bolsin, I did not know his 25 name at the time, came over and said, "What is he doing 0103 1 on an adult ventilator? This is a baby, he should be on 2 a child's ventilator". They were like this, behind him, 3 a discussion whether Max should be on an adult 4 ventilator or not. In the end, they put him on a child 5 ventilator, but by this time Max had not had a good day 6 because he had been taken off the ventilator earlier and 7 he did not do very well either on the adult ventilator. 8 They messed around with him until about 9, 9.30 at 9 night. Eventually, they tried to keep him stabilised 10 for the night, because he was very up and down at that 11 point. 12 Q. Who seemed to be in charge of the intensive care of Max? 13 A. I assumed it was Mr Dhasmana. I presumed it was 14 Mr Dhasmana. 15 Q. How often did you see him there to take charge? 16 A. Most days. Most days. I know one particular evening 17 they actually rang him at home because something had 18 gone wrong with Max and they actually rang him about 19 midnight at home, so presumably Mr Dhasmana was the main 20 person. Also there was another doctor there who came 21 round and got to his bed and said "I am not going to do 22 anything, I am not going to change anything on 23 Mr Dhasmana's patients, because he will only change it 24 back again", so presumably he was the boss, or thought 25 he was. 0104 1 Q. It appeared, did it, that Max had suffered some 2 infection? 3 A. Yes. 4 Q. And as a result, he was not thriving as well as everyone 5 had hoped? 6 A. Yes. 7 Q. I think if we move on to page 17 of your statement, 8 paragraph 40, you describe Dr Hayes returning? 9 A. Yes. 10 Q. And your comment to her? 11 A. "Welcome back. Now please sort out my son because they 12 do not know what to do with him here". 13 Q. Are those the actual words? 14 A. Yes. 15 Q. And you recall that clearly? 16 A. Yes. 17 Q. Which suggests that nobody was taking control or 18 direction? 19 A. Well, if they were, they did not know what they were 20 doing. My brother had actually come in to visit on the 21 evening, on the Thursday evening previous before, when 22 Dr Bolsin -- he said to me "Look, I am very sorry, 23 I cannot stay here because they do not seem to know what 24 they are doing here". He worked that out in 25 a few hours. I thought it was because what Max had was 0105 1 complicated and that perhaps they did not know what to 2 do in his particular case because they had not come 3 across his problem that often. That was the only way 4 I could get over this in my own head. 5 Q. What gave you that understanding? 6 A. Because they did not know what they were doing, it 7 seemed to be trial and error on everything. 8 Q. So you assumed that they appeared not to know what they 9 were doing because it was a new problem? 10 A. Yes. They did not actually say that, but that is the 11 only conclusion I could come to at the time. 12 Q. When you welcomed Dr Hayes, why did you think that she 13 would know when they did not? 14 A. It was a fresh face, really, and she did not lie to me 15 about being up to 14 days afterwards, because by this 16 time it was 10 or 11 days after surgery. I thought she 17 might be able to do something. It was just hope, if you 18 like. 19 Q. The day after that, 12th July: you deal with that at 20 page 18 of your statement. It was, I think, the first 21 time that you were told that Max was critical? 22 A. Yes. Two minutes before he died, or possibly after he 23 had died. 24 Q. How was that news broken to you? 25 A. On this particular day, the nurse that was on duty in 0106 1 the morning was a very nervous nurse. She had looked 2 after Max the evening before. She was one of those that 3 kept sending me off, saying "Go off". On this 4 particular occasion she said "Why don't you go off for 5 lunch?" My daughter had been visiting as well, and 6 I wanted to make sure she was not too unduly upset, 7 either as a result of me or with the situation. So we 8 went off to lunch. When I came back, there was just 9 loads of nurses around Max's bed. I thought, "What has 10 happened now?" because he was up and down quite a lot, 11 really. One of them grabbed hold of me and said "Come 12 outside". There was a big corridor outside of ITU with 13 some little seats, like a bus shelter of seats is the 14 only way to describe it. I was sat on there for a few 15 moments and I saw Steve, my husband, and I said "I think 16 something is wrong, perhaps you should take Amy home". 17 Pure chance, my mother was there and she took Amy home 18 and we sat on the seats waiting for someone to tell us 19 what was going on. By that point I had got to the point 20 where I did not fight or anything, I could have 21 complained at that point like I did before, but I never. 22 Q. How long had you had to wait? 23 A. I do not know. Not very long. Minutes, I suppose. 24 Five minutes, possibly. There was a door open to 25 somebody's office. We were sat in this corridor and 0107 1 there was a door to somebody's office and we heard 2 a doctor ring down to surgery to get Mr Dhasmana up. 3 I had heard the conversation, sat on these benches, so 4 I knew it was not good, because they were getting him up 5 out of surgery. This nurse came up -- doctor, it was 6 a doctor, and just looked at us, put her head down and 7 went back into ITU. Then a nurse came out and said 8 "I will try and find out what is going on", which is 9 the main phrase that was said to me throughout my time 10 there: "I will try and find out what is going on". She 11 disappeared, then Mr Dhasmana came up and he went in and 12 said "I will speak to you in a minute". He went into 13 ITU, came out and said, "We will come down to the room 14 [the parents' room] and I will talk to you". That was 15 the first time he actually did that, the first time. 16 Q. The first time he spoke to you in the parents' room? 17 A. Yes, he had spoken to us briefly when he had been on the 18 ward, on ITU. I spoke to him myself a couple of times, 19 but he had never taken us out and spoken to us like that 20 before. 21 So we went down into this room and we were sat on 22 the chairs and Mr Dhasmana said that they had been 23 changing his tube and he was not responding very well to 24 being off the ventilator. He said that he had been 25 a bit worried about his jaundice, because he was very -- 0108 1 he was almost orange at that point, he was very badly 2 liver jaundiced at that point. He said "I do not know 3 which way it is going to go". He got up and left the 4 room. There was discussion in the corridor between -- 5 at least Kathy Warren was there, that is another reason 6 why I remember her and him and another doctor, possibly 7 other nurses, there seemed to be quite a few people in 8 the corridor. Then Mr Dhasmana came back in and said 9 whilst he had been talking to me, Max had died. 10 Q. When you discovered that, did you want to see Max? 11 A. The first thing, I said "I want to see him". I stood up 12 to go out of the room and he said "No, wait a minute, we 13 will sort him out and bring him down here to you. You 14 do not need to go in there. We will take all his tubes 15 out and things and bring him down to you". So I sat 16 back down again. 17 Q. Did that happen? 18 A. Yes. 19 Q. Did you have time after Max died to sort your feelings 20 out and come to terms at the hospital with what had 21 happened? 22 A. We were quite -- they seemed to be in quite a hurry to 23 get us out, but personally it did not bother me too 24 much, because by that point I had just had enough 25 anyway. Max had been up and down, up and down and I did 0109 1 not know whether I was coming or going. I had had 2 a feeling that he was not going to live on the Sunday 3 before that, so even though no-one said anything, just 4 the look in his eyes had said -- I did not think he was 5 going to live. 6 Q. Your husband, I think, went back to the Children's 7 Hospital and spoke to Helen Vegoda? 8 A. That is right, the day after. 9 Q. That was presumably because of contact that you and he 10 had made with her beforehand? 11 A. Yes. 12 Q. So you saw her as someone who would help? 13 A. My husband went on his own the following morning, he 14 just took off and went there on his own. He obviously 15 needed to talk to a third party at that point. When he 16 came home, he said that Helen had suggested I should go 17 down and speak to her at some time. I did not mind 18 either way. I knew Helen Vegoda. I had spoken to her 19 a couple of times, but I never felt I really needed her 20 perhaps like some parents would have done. 21 Q. Did you in fact speak to her? 22 A. I did. We went down. Unfortunately I went down to see 23 Max, who was in there, in the Chapel of Rest in the 24 Children's Hospital at that point, which I wish I had 25 not done, actually. They had dressed him in some sort 0110 1 of bonnet and it did not look like my son. I was more 2 upset afterwards than I was before. 3 Q. Just probing that a little, because it may be of 4 importance: what in particular was it that upset you 5 about seeing your son like that? 6 A. The whole thing. He was -- I do not know, they had 7 funny clothes. I mean, it might sound silly, but 8 I preferred if he was in just a nappy, if you like, like 9 he had been in ITU. He was in, like, a crib, a rocking 10 crib thing. He had never been in a crib. And there was 11 a fly flying around which kept landing on him, which 12 made it seem sort of -- although Helen kept apologising 13 for this, I must admit. 14 Q. Had anyone asked what he might best be dressed in? 15 A. No, no-one had asked anything. I did take a baby-grow 16 and suggested that someone would do it, or I would do it 17 myself. Also he had a bruise on his head which I had 18 seen the day before. Between the time they were trying 19 to resuscitate him and taken down to the family room, 20 whatever room it was, he had quite a nasty bruise on his 21 forehead. The following day it looked even worse, as if 22 they had been quite rough with him when they were trying 23 to resuscitate him, which I was not very pleased about 24 either. 25 Q. At this time, why did you understand Max had died? 0111 1 A. I am just trying to think of the day. I think two days 2 possibly after he died, my GP rang me up and said they 3 had had a phone call from the BRI to say Max had died. 4 She asked was I coping all right, did I want tablets or 5 anything? I said no, I was fine. She said "Did he die 6 of septicaemia?" 7 A. I said "No-one said he had septicaemia". I did not 8 realise he did. I knew he was very yellow. If I was 9 hazarding a guess I would have said he died from liver 10 failure, just from what I could see with absolutely no 11 medical background, just looking at him. 12 Q. One of the points which I think you particularly want to 13 make is that you feel that you have had misleading, 14 perhaps untrue information given to you? 15 A. Yes. 16 Q. By whom and when? 17 A. Following surgery, we were in contact with Helen 18 Vegoda. In fact Mr Dhasmana had said before we left the 19 hospital, we could come back and discuss what went wrong 20 with Max, were his words, and through Helen Vegoda, we 21 had an appointment at the end of August, just a few 22 weeks afterwards, to come back. 23 Q. This was 1994? 24 A. Yes, this was August 1994, just before Mr Dhasmana was 25 going on holiday he fitted us in, but we had to go back 0112 1 to the BRI in the same room we had been in before and he 2 said he would read the postmortem to us. I did not feel 3 I would understand the postmortem, because I did not 4 feel it was right what it said on his death certificate, 5 let alone what would be in the postmortem. So I let him 6 read it, fine. And he said that everything looked fine 7 surgically with Max, he had been doing okay, but he got 8 an infection -- it was obvious he had an infection -- 9 and he said that he had hepatitis B, his words were 10 "probably from a dose of blood given to him". So we 11 sort of came out, it was only about five minutes we were 12 in there. 13 We got home and I spoke to my husband and said 14 "Everyone has done what they could, and obviously if he 15 has now caught blood poisoning, perhaps it was the blood 16 transfusion people who did not screen it particularly 17 well". We were trying to think who was at fault here, 18 to give Max a bad dose of blood. In the end we decided 19 whoever was at fault it was not going to change 20 anything, so we just left things as they were. 21 Q. You are sure you understood that correctly? 22 A. I am definitely sure, I told all my friends and 23 relatives. That was exactly what he said to us. 24 Q. Because if Max had died as you understood of an 25 infection or of septicaemia, it would be easy enough 0113 1 perhaps to say so? 2 A. Yes. I agree. Or if the surgery had failed, it would 3 have been easy enough to say so as well. If he said 4 "I tried my best surgically but I am afraid I could not 5 do it", I would have accepted that at the time. 6 Q. What time of the day roughly was it that you saw him? 7 A. I really do not know. 8 Q. You say about 5 or 10 minutes? 9 A. It was not very long. I think it was an afternoon as 10 opposed to a morning, but I would not like to say what 11 time. 12 Q. Here you were being told that the hospital had made 13 a mistake because somebody had given Max the wrong 14 blood? 15 A. Yes. 16 Q. Did you follow that up by writing? 17 A. No, we never. I told you, we spoke about it and 18 thought, well, everybody tried their best and it was not 19 to be. 20 Q. When Bristol got into the news, you obviously thought 21 again about what had happened to Max? 22 A. Yes. 23 Q. Did you then raise what you have been told about 24 hepatitis B with anyone? 25 A. I did. This was a separate incident. Something had 0114 1 happened with my other son at the Children's Hospital 2 and I had cause to complain to Ian Barrington at the 3 Children's Hospital. I had written in there that both 4 my children had been put at risk of hepatitis B, and 5 I had a letter back to say if I had any worries about 6 Max, because by this time it was out in the news, 7 I could come and talk to Dr Hayes, who does remember 8 Max. So we did, and went to speak to Dr Hayes in 9 October 1996. 10 Dr Hayes, once again, said "I will read the 11 postmortem to you". She seemed to read a very different 12 picture than what Mr Dhasmana had said. 13 Q. So what picture did you get from her you had not got 14 from Mr Dhasmana? 15 A. She seemed to think surgery was not successful; that Max 16 was going to die, basically. There was a phrase she 17 used, venous congestion? Where the way she described it 18 was, all his arteries were all blocking up because the 19 flow of the blood was not good enough. The blood was 20 not flowing correctly round his body and one by one his 21 organs were giving up. When I said that Mr Dhasmana had 22 said that he had hepatitis B -- and in fairness, he 23 looked like he had hepatitis, because of the colour he 24 was, this is why we believed it. He was very, very 25 yellow. 0115 1 She said "I think it came back negative", and she 2 checked it and said, "Yes, he did not have hepatitis B. 3 There was a possibility he could have had hepatitis C, 4 which is caused by this congestion in the veins". That 5 is what she said. 6 Q. In fact, you know now that he was screened for both 7 hepatitis B and C? 8 A. Yes. 9 Q. With negative results? 10 A. Yes. 11 Q. I think you have seen the notes since, have you? 12 A. I have, yes, only recently. 13 Q. What else, if anything, did Mr Dhasmana say or mention 14 about the treatment which Max had had in the Intensive 15 Care Unit? 16 A. I do not think he did, not that I can remember, being 17 fair. I can remember him saying that he was sick before 18 he came in, and I objected to that because by June he 19 was the healthiest he possibly could have been to 20 undertake that surgery and Dr Hayes had said it as well. 21 Q. Said which, that he was sick or healthy? 22 A. He was as healthy as he could have been. He was ready 23 for the surgery, under the circumstances, because of 24 what was wrong with him. He was not in heart failure 25 before the surgery, he was not on any medication, he 0116 1 could not have been actually any more healthy to 2 undertake it than he was then. 3 Mr Dhasmana was trying to say he had been very 4 sick before, and it was almost as if he was an emergency 5 operation. In fact, he was not at that point. He was 6 not in heart failure at all. 7 Q. You have spoken about septicaemia, hepatitis B, venous 8 congestion. Throughout the time that Max was in the 9 ITU, you have also described some confusion about what 10 might be the problem with him? 11 A. Yes. 12 Q. He was obviously suffering from some sort of infection, 13 was he? 14 A. Yes. 15 Q. Apart from being yellow in colour? 16 A. Yes. 17 Q. Did you understand, being there and listening to what 18 was going on, anything about the nature of that 19 condition, or what was being done about it? 20 A. I understood they did not really know. They had 21 a microbiologist in to take swabs from various parts of 22 him. They did not seem to know what was wrong with 23 him. At one point Mr Dhasmana actually said to me, when 24 he was there, "Perhaps he was not very well before he 25 came in". I said that was rubbish, "He was fine when he 0117 1 came in". When I say fine, he obviously had the 2 problems with his heart, but he never had a cold or 3 anything. He was fine in general terms. 4 Q. The only other matter I want to ask you about, from your 5 statement, one or two other general matters, is in 6 respect of organ retention. 7 A. Yes. 8 Q. You volunteered Max's organs? 9 A. Yes. 10 Q. When he first went into the BRI? 11 A. Yes. 12 Q. You understood that a postmortem was going to be 13 conducted? 14 A. I was told that if the child died in the hospital, there 15 had to be a postmortem. 16 Q. What, if anything, was said to you about the possibility 17 that his heart -- 18 A. Nothing. Nothing at all. I assumed that I was going to 19 bury him intact, because the only thing they were 20 interested in was the retinas, and if he had any form of 21 blood poisoning, I would imagine even retinas would not 22 be worth keeping. 23 Q. If you had been asked about the retention issue, do you 24 think you would have consented or not? 25 A. I do not really know. Possibly before surgery, if 0118 1 I thought any good was going to come out of it, 2 possibly. But if they had asked me minutes after him 3 dying, I doubt very much, because especially the heart, 4 because the heart was the main thing which is why he 5 died. If he did not have a problem with his heart, he 6 would not have been in for surgery. So I do not think 7 I would have done. 8 Q. When did you discover what had actually happened, in 9 terms of the retention of his heart? 10 A. Only this year, I think it was January this year. 11 Q. How did that affect you? 12 A. We were quite shocked. Briefly, on the news, once 13 before I heard of a person who had had the same, similar 14 problem. When it first came out that they might have 15 retained some hearts, I almost knew, I thought they were 16 bound to have kept Max's, but we have not decided what 17 to do about it. It is too early, maybe. We have not 18 discussed it. 19 Q. How do you think it could or should have been dealt 20 with? 21 A. I think it could have been mentioned when I mentioned 22 it, first of all, a day or so before surgery. If there 23 was a reason, perhaps, where children could have been 24 helped in the future, then if it was a definite thing 25 and they could have learned from it, then I might have 0119 1 agreed. If they had said it in this little room when 2 all I wanted to do was pick him up after he died, the 3 chances were I would not have agreed there. 4 Q. In your being in and around the BRI, and I think since 5 as a member of the Heart Children's Action Group, you 6 have come across others who have suffered bereavement? 7 A. Yes. 8 Q. Would you like to say what your view is as to the way in 9 which death affects people? 10 A. I think that the main thing is, every single death is 11 different, regardless of children or not children, 12 really, but I think if everything is done in a child's 13 case, if you follow the wish of the parent at the time, 14 then it helps them get over it afterwards, at a later 15 time. If you follow exactly to the parent's wishes, 16 I think they can get over the death a lot better. 17 I really think so. 18 Q. So you would put as the main concern following and 19 understanding the -- 20 A. The short time before the death, at the time of death 21 and that little time after. But I have to say that 22 every parent is different. I think it would have -- 23 rather than have guidelines as to what should be done, 24 it is to have a look at the parent, because what suits 25 one does not suit another. 0120 1 Q. So if you were thinking of guidelines, the guideline 2 would be -- 3 A. Look to the parents. 4 Q. Have respect and look to the parents? 5 A. Look to the parents, definitely, yes. 6 Q. And again, I think you want to make a point which is not 7 in the statement as such, about the way in which your 8 child's case was dealt with at the General Medical 9 Council? 10 A. Yes. Well, the people from the General Medical Council 11 rang me one day before they were coming to Bristol to 12 ask if they could come and see me. I had agreed, but 13 I am a childminder and after school I look after 14 children, so I said "Can you please make sure it is 15 early in the morning, and my number is ..." I knew they 16 were going to a friend of mine who lives quite close to 17 me, they were going to her house first. They were in 18 her house a very long time, most of the day, and arrived 19 at my house at 4.15, listened to what I had to say and 20 at this point is when I thought Max had died from 21 hepatitis B. This was the September before we had 22 spoken to Dr Hayes and said they were not interested, 23 they were not looking at cases such as Max's. If 24 I wanted to explore the fact Max had hepatitis further, 25 that had to be done separately. They were at the house 0121 1 a short while after that, and that was all I heard. 2 Then I found when the General Medical Council 3 started to look into the surgeons, Max's name was 4 mentioned in the newspaper, and I phoned the newspaper 5 and said "Where did you get my son's name from?" and 6 they said "He is actually on -- mentioned in the GMC". 7 That is the first time I knew they were going to discuss 8 him, although they did first write and ask me if they 9 could have his medical records for background 10 information, but I did not realise that meant they were 11 going to discuss him. I know other parents who had the 12 same letter and their child was not discussed, so I did 13 not think Max was going to be. 14 Q. So it came as a shock to you? 15 A. Quite a shock, yes. 16 Q. One thing I think I need to correct, you used the 17 expression "bad blood". I think in picking it up with 18 you, I used the expression "wrong blood". It is of 19 course bad blood and not wrong blood you had in mind, 20 I think? 21 A. That is right. 22 MR LANGSTAFF: I am sorry if my question was at all 23 misleading. 24 I do not know if, at this stage, Mrs Mandelson 25 would like to ask anything? 0122 1 MRS MANDELSON: If I may, there was just one thought I had, 2 really. You talked about a report from the hospital and 3 that your husband Steve had seen Helen Vegoda, but you 4 had decided you did not want to take up that support. 5 But a little earlier you mentioned that Kathy Warren had 6 visited. I was wondering, did you think she visited you 7 as a representative of the hospital to offer support, or 8 was she visiting you in a personal capacity? 9 A. I am just trying to think why she came to my house. She 10 came because we had left something in the hospital or 11 something. 12 Q. So she was just bringing something? 13 A. I said I would come and collect it. I am trying to 14 think what it was. I said "Shall I come to the BRI to 15 collect it" and she said "I will bring it down for you, 16 you do not need to come in again". That is why she 17 came, just very briefly. 18 MR LANGSTAFF: I asked you a number of questions. There may 19 be some things I have not covered or have not emphasised 20 as much as you would wish. Is there anything you want 21 to add, to tell us? 22 A. I think the only thing, really, is that when Max was 23 born he was put on to a system. I expected that the 24 people on the system would be honest with me. 25 Completely. I do not think that happened. Dr Hayes 0123 1 should have said that the reason why Max's surgery would 2 be as severe as to risk Max's life, what she should have 3 said was his chances would increase if he went to 4 another surgeon, that would have been more honest and it 5 would not have made any difference to me at the time, 6 because as far as I was concerned, Mr Dhasmana had done 7 Max's closed-heart surgery, and I would have respected 8 him if he said "I cannot go ahead and do that". 9 I do not think some of the nurses were very honest 10 either. They must have known things that I did not. 11 I feel a little bit concerned that there is a lot of 12 parents here as well that would like to have the 13 opportunity to discuss their children, and I would not 14 like the system to let them down either. That is about 15 all. Really. 16 MR LANGSTAFF: From my perspective, thank you very much 17 indeed. There may be some questions from the Panel or 18 from Mr Trusted. 19 THE CHAIRMAN: Mrs Johnson, one question from Professor 20 Jarman. 21 EXAMINED BY THE PANEL 22 PROFESSOR JARMAN: Do you know the cause of death of Max 23 now? 24 A. I am assuming, not completely, no-one has ever actually 25 come up and said, I am assuming it is congestion of the 0124 1 veins due to the fact of the surgery. 2 Q. But you have never had a definite answer? 3 A. No, I am only going by what I have read myself, 4 personally. That is about all. 5 PROFESSOR JARMAN: Thank you. 6 MR LANGSTAFF: I am told, sir, there is no re-examination. 7 THE CHAIRMAN: Thank you. Mrs Johnson, thank you very much 8 indeed for coming to talk to us. It has been extremely 9 helpful to hear you and other parents today. We are 10 much in your debt. Thank you very much. 11 (The witness withdrew) 12 MR LANGSTAFF: Sir, our last witness today will be Mrs Helen 13 Johnson. I would ask that there is a short break before 14 she gives her evidence. 15 May I just say, at this stage, that you will have 16 noticed, as indeed the wider public will have noticed, 17 that all of today's parents have criticisms to make of 18 the hospital and they are all members of the Bristol 19 Children Heart Action Group. 20 It must not be thought that there is an imbalance 21 in terms of the evidence which has been received by the 22 Panel. To make that point good, may I mention that of 23 course the evidence is not only the evidence which is 24 given orally, but also that which comes in writing and 25 written form through statements, and we are grateful 0125 1 for those statements which we have had from members, 2 for instance, of the Surgeons' Support Group, who 3 make points which are generally in recognition of the 4 quality of care, as they see it, which they have 5 received. 6 We did make efforts to bring before you some of 7 those witnesses to give their evidence live, for various 8 reasons, it did not prove to be possible, for reasons 9 relating to personal circumstances and the like, but 10 I have just heard that in fact Mrs Hawkins, we hoped 11 originally to have today, will in fact now be coming on 12 Wednesday, we hope. We believe that that is likely. 13 I hope I do not embarrass her by giving a spurious 14 certainty to her attendance. 15 Sir, if we may now perhaps have a short break? 16 THE CHAIRMAN: Let us break for 10 minutes if that is 17 acceptable. That means we reconvene at 25 to 4. 18 (3.25 pm) 19 (A short break) 20 (3.55 pm) 21 MR MACLEAN: Sir, our next and final witness for today is 22 Mrs Helen Johnson. Perhaps I could invite her to come 23 and take the chair, please. 24 Mrs Johnson, could I ask you to stand up again to 25 take the oath? 0126 1 MRS HELEN JOHNSON (SWORN): 2 Examined by MR MACLEAN: 3 Q. Your full name is Helen Mary Alice Johnson? 4 A. That is right. 5 Q. Can I ask you, Mrs Johnson, to have a look at the screen 6 in front of you? Could I have document WIT 259/1? 7 That, I think, is the cover sheet for the statement that 8 you have made to the Inquiry? 9 A. Yes. 10 Q. If we go over the page to page 2, that is the first 11 substantive page of your statement? 12 A. Yes. 13 Q. If we look at the bottom of the page, that is your 14 signature at the bottom? 15 A. Yes. 16 Q. If we go to page 19, that is the last page of your 17 statement, and again, your signature? 18 A. Yes. 19 Q. Have you had a chance of reading that statement 20 recently? 21 A. Yes. 22 Q. Is there anything in it that you now want to change or 23 add to in any way? 24 A. No. 25 Q. The contents of that statement comprise your evidence to 0127 1 the Inquiry? 2 A. Yes, that is true. 3 Q. The Panel have had that statement and we have all read 4 it, so we do not need, than, to go through every point 5 that you make in that statement; I just want to take one 6 or two points and just explore them a little bit more 7 with you this afternoon. You should understand that 8 everything that is in your statement will have been 9 read, digested, by the Panel. 10 Your daughter Jessica Helen had surgery at Bristol 11 during the period the Inquiry is concerned with? 12 A. Yes. 13 Q. And she was operated on, I think, by Mr Dhasmana? 14 A. That is right. 15 Q. If we go, please, to page 2 of your statement, you say 16 there -- it is dated 2nd July 1999 -- that Jessica will 17 be 6 in July. So she is now just over 6 years old? 18 A. Yes. 19 Q. Born in July 1993. If we go to paragraph 5 on page 3, 20 please, and then over the page to paragraph 6, you 21 explain that when Jessica came home after her birth, 22 there were what you considered to be significant 23 problems with her? 24 A. Yes, there were. That is an understatement, actually. 25 There were huge problems with her. 0128 1 Q. You set out in your statement very clearly the trouble 2 you have had persuading anyone else, really, to take 3 your word that there was something profoundly wrong with 4 Jessica? 5 A. Yes. 6 Q. But you eventually got Jessica to hospital and if we go 7 to paragraph 11, page 6, at this stage Jessica was in 8 the Baby Unit at the Children's Hospital, was she not? 9 A. Yes, that is right. 10 Q. You saw Dr Joffe? 11 A. Yes. 12 Q. It was explained that he was a heart doctor, in fact 13 a cardiologist, and he came to meet you? 14 A. Yes. 15 Q. He explained that Jessica's kidneys were in failure and 16 so was her liver, which was caused by a problem with her 17 heart. 18 Do you remember how the problem was explained to 19 you by Dr Joffe? 20 A. Yes. I was told she had coarctation of the aorta which 21 he described as a narrowing in the aorta, and she also 22 had a large VSD which is a hole in her heart, and patent 23 ductus arteriosus. He also said she was so ill because 24 coarctation reduces blood pressure, raises it in the top 25 half of the body and lowers it in the bottom part of the 0129 1 body, so no blood was getting through to her kidneys or 2 her liver and that caused her kidneys and liver to go 3 into failure. 4 Q. Terms like "coarctation of the aorta, ventricular septal 5 defect, those were terms which you were unfamiliar with? 6 A. I had never heard of them before. 7 Q. To what extent did you feel that you understood what was 8 being explained by Dr Joffe? Did he put it in terms 9 that were easily understood by someone who was not 10 medically qualified themselves? 11 A. No, I do not think he did. I just knew there was 12 a narrowing in the aorta and from what I read and from 13 Helen Vegoda that got me to understand it more. 14 Q. I was going to ask you how it was you informed yourself 15 of the background to Jessica's complaint, her 16 condition. What was the source by which you learned 17 more about these strange terms? 18 A. It was through the Heart Children book, and also, I did 19 not feel that went far enough, so I also had a book 20 imported in from America for me as well. 21 Q. The Heart Group, that was the Bristol Heart Circle 22 group, was it? 23 A. Yes. 24 Q. You were put on to that by Helen Vegoda? 25 A. Yes, but not until two weeks later, and I had asked her 0130 1 on that day whether there was any information, and she 2 produced a leaflet for me, but I also felt if I had had 3 that book that day, even though she was going through 4 the operation, I felt that it would have helped me to 5 have understood what was going on and what the 6 procedures actually were. 7 Q. You explain in your statement that the first thing that 8 was going to be done to Jessica to try to put right the 9 problem with her heart was to carry out an operation to 10 put a band around one of her arteries? 11 A. Yes. 12 Q. If you look at paragraph 14, page 7, Mr Dhasmana 13 explained that procedure to you, did he not? 14 A. Yes, that is right. She also had the coarctation done 15 at the same time. 16 Q. What did you understand was being done at that stage? 17 A. I imagined it to be like -- the coarctation, I imagined 18 it to be like an elastic band being put round her actual 19 lungs. That is what I thought was actually happening, 20 it was an elastic band, but I have since found out that 21 is not quite right. 22 Q. How did Mr Dhasmana explain what he was going to do? 23 A. He showed me some diagrams but at that stage I could not 24 understand them, I could not actually take anything in 25 at all, what was actually happening. I took them home 0131 1 with me and looked at them, but I had not got them any 2 more. 3 Q. When you took them home and had a more leisurely look at 4 them, did you feel reasonably confident that you 5 understood at least the basics of what was going to be 6 done? 7 A. No, not really. 8 Q. Was there anyone you turned to for further advice or for 9 assistance to help to understand? 10 A. The nursing staff and Helen Vegoda, really. 11 Q. How useful a source were they of further information? 12 A. Quite useful, really. 13 Q. If you look down paragraph 15 on the same page: 14 "Mr Dhasmana told us that Jessica had at least 15 a 70 per cent chance of survival." 16 A. Yes. 17 Q. It would appear from that paragraph as though your 18 mother was present during this discussion? 19 A. Yes, my mother and my ex-husband. 20 Q. Was there anyone else present? 21 A. I think Helen Vegoda. 22 Q. Did you understand that that meant that for every 10 23 people with Jessica's problem, three would die on 24 average? 25 A. No, I had not looked at it in that way. I suppose I had 0132 1 looked at it that 3 out of 100 would die, but not 2 from ... 3 Q. Did you understand that Mr Dhasmana was saying that 4 Jessica had a 70 per cent chance of survival through the 5 first palliative procedure, or at the end of both 6 procedures? 7 A. At the end of both procedures. 8 Q. So this was the overall eventual survival rate that he 9 was quoting to you? 10 A. Yes. 11 Q. Did you understand that that was 70 per cent survival 12 for people with Jessica's condition in Bristol, or in 13 the United Kingdom, or somewhere else? 14 A. I thought she was talking about his own rate. 15 Q. Did he say so, or did you just assume that? 16 A. I just assumed that. 17 Q. Did you ask any questions about the risk that was quoted 18 to you? 19 A. I do not think I did at the time. I mean, at the time 20 I was actually pleased because the way I had seen 21 Jessica, I thought she had a zero per cent chance of 22 survival. 23 Q. So you were actually quite reassured by this? 24 A. Yes, I was, definitely. 25 Q. You then explained the first operation that Jessica 0133 1 had. Paragraph 19, please, page 8: Jessica was 2 ventilated for 10 days after the operation? 3 A. Yes. 4 Q. Was that longer than you had expected? 5 A. Yes, much longer. I had been told a couple of days at 6 the very most. 7 Q. How did you react to that? 8 A. I was quite surprised, but nobody really told me 9 anything during that time at all. I cannot remember 10 specifically being spoken to by Dr Joffe, unless 11 I actually grabbed hold of him, and when they actually 12 came round, we were actually asked to leave the unit. 13 I knew that at some point she had a chest infection, but 14 nobody really explained why she needed to still be 15 ventilated, they just kept saying to me, "Just another 16 couple of days". 17 Q. Who was the doctor who was in charge of Jessica during 18 those 10 days, so far as you were aware? 19 A. So far as I was aware, it was Dr Joffe. One of the 20 doctors actually said to me, "You must feel like we are 21 neglecting you", or something, but he said "That is good 22 news, because it means she is okay", and I was just 23 thinking "How can she be okay when she is still 24 ventilated?" 25 Q. At this stage, just to be clear, we are still in the 0134 1 Children's Hospital? 2 A. Yes. 3 Q. Jessica has never yet been to the Bristol Royal 4 Infirmary? 5 A. No, not at that stage. 6 Q. You then refer to seeing Mr Dhasmana again, page 9. 7 Then, at paragraph 21, the next on the same page, this 8 is now the end of the 10 day period? 9 A. Yes, that is right. 10 Q. This was a traumatic time, I think, for you, was it not? 11 A. It was very traumatic, yes. 12 Q. You mention Helen Vegoda there? 13 A. Yes. 14 Q. How much contact had you had with her throughout 15 Jessica's stay in the hospital? 16 A. Every day. 17 Q. Did you find her a welcome friendly face? 18 A. I found her a friendly face and I was quite happy to, 19 but sometimes I felt like I could have coped more on my 20 own, and I also felt -- I mean, I do not know her when 21 she is off duty, so to speak, but I found her, she was 22 quite patronising when she actually talked to you, but 23 I was not sure whether that was just her manner and that 24 was how she was all of the time. I saw her recently, as 25 well, when I was taking Jessica to an outpatients 0135 1 appointment. She always says hello to me, but it is 2 always the same sort of tone. I cannot really comment 3 on that because I do not know whether she is like it all 4 the time or whether it is specifically reserved for the 5 patients. 6 Q. She was attentive to your needs? 7 A. Yes, she was, yes. 8 Q. But is it fair to say that whilst she was attentive, 9 perhaps in some ways perhaps a little too attentive for 10 your particular taste, now and again? She did not fill 11 gap that you identify in paragraph 19 of not knowing 12 from a doctor what was going on? 13 A. No. I needed to -- and even to this day, Jessica is 14 6 years old now, but apart from the very first time that 15 Jessica, when I first met Dr Joffe in the ITU, that is 16 the only time I have ever spoken to a doctor away from 17 Jessica. I think that is important, because you need to 18 be able to ask questions and not have to talk all the 19 time in front of a child, but it was never offered to 20 me, anyway. 21 Q. Jessica was discharged from the Children's Hospital 22 after this procedure was carried out? 23 A. Yes. 24 Q. And went home? 25 A. Yes. 0136 1 Q. I think it is right, is it not, that there was some 2 follow-up support at which Helen Vegoda took some steps 3 to organise? 4 A. Yes. 5 Q. In particular, with the Social Services department? 6 A. Yes. 7 Q. And I think it is not necessary to go to the 8 correspondence, but you are aware of correspondence, for 9 example, in 1993, between Helen Vegoda and the Social 10 Services department? 11 A. Yes, that is true. 12 Q. And that Helen Vegoda was in contact also with your GP 13 and health visitor? 14 A. Yes. 15 Q. Did the health visitor continue to visit you and Jessica 16 after her discharge from hospital? 17 A. Yes. 18 Q. How did you find that? Was that of assistance? 19 A. I found that of assistance, yes. 20 Q. In due course, it was always anticipated that Jessica 21 would need another operation, was it not? 22 A. Yes, that is true. 23 Q. And if we go to page 11, please, paragraph 25, in 24 October 1994 Jessica was catheterised by Dr Joffe? 25 A. Yes. 0137 1 Q. You were told at the outset amongst other things Jessica 2 had a VSD? 3 A. Yes. 4 Q. Dr Joffe told you at this stage he had found four or 5 five ventricular septal defects? 6 A. Yes, that is right. 7 Q. You said you knew what they were because you read about 8 them in the Heart Circle's document? 9 A. Yes, that is true. 10 Q. He said in the next paragraph Jessica needed to go back 11 for another operation? 12 A. Yes. 13 Q. And Jessica was put on Mr Dhasmana's waiting list? 14 A. Yes. 15 Q. And then over the page, you saw Mr Dhasmana in January 16 1995? 17 A. Yes, that is right. 18 Q. And again, using diagrams, he explained what he was 19 going to do? 20 A. Yes. 21 Q. Did you find that explanation clear, unclear, helpful or 22 unhelpful? 23 A. It was not particularly unclear, but I could not -- I do 24 not think that I really totally understood because, as 25 I said before, I still thought it was like an elastic 0138 1 band, so I only thought it was like having to snip off 2 an elastic band, but then he explained, no, he had to 3 patch and repair the pulmonary artery. But I do not 4 really understand it, not even now. 5 Q. You say in the statement he said that Jessica stood 6 a 92 per cent chance of survival? 7 A. Yes. 8 Q. How did you understand that to relate to the earlier 9 figure of 70 per cent? 10 A. It meant that, you know, it was much better, much better 11 odds, and it meant that 92 per cent, 92 out of 100 would 12 actually survive. 13 Q. Did it strike you as interesting that the ratio should 14 have improved apparently dramatically? 15 A. No, it did not, because Jessica was so ill before she 16 had her first operation. She was ventilated and she, 17 you know, she needed a full life support, basically, 18 whereas this time, although I cannot say she was a well 19 child, she was not ventilated and I assumed that she was 20 going into this operation a lot weller than she had the 21 first time. 22 Q. 92 per cent: you are not there being given a range. It 23 is not being said it is between 5 and 10 per cent. 92, 24 precise, a very round number, if you like. Are you sure 25 that that was the risk that was quoted to you, 92 per 0139 1 cent? 2 A. I am convinced, yes. 3 Q. Again, what did you understand that risk to be? 4 Mr Dhasmana's risk? Bristol's risk? 5 A. 92 per cent would have been, the 8 per cent would have 6 been just problems with the anaesthetic, and the 92 per 7 cent would have been Mr Dhasmana's. 8 Q. So you thought that those would be the figures 9 applicable anywhere because the only people who did not 10 make it were anaesthetic risks? 11 A. Yes. 12 Q. You say in your statement that before the second 13 operation had taken place, you had seen a television 14 programme which was concerned with cardiac surgery at 15 Bristol? 16 A. Yes, that is true. 17 Q. And not surprisingly, that concerned you because your 18 daughter was on the waiting list for the cardiac 19 operation in Bristol? 20 A. Yes. 21 Q. And you went to see Dr Joffe? 22 A. Yes, that is true. 23 Q. What did you say to Dr Joffe when you saw him in that 24 context? 25 A. I just said I was a bit concerned because I had heard 0140 1 about this in the news and I asked him whether he felt 2 that Mr Dhasmana was safe to operate on Jessica. 3 Q. What did he say? 4 A. He said that in his opinion, he was and that these 5 problems referred to a small amount of operations, much 6 much bigger than Jessica's were, and that the children 7 were -- the reason why the children had died was because 8 they were so small and the operations were so big and 9 they were very much iller than Jessica was. He also 10 said that Mr Dhasmana knew -- I am getting confused now, 11 I cannot quite remember where I have just left off. 12 Q. Take it slowly. You said that Dr Joffe explained the 13 reason why the children had died was because they were 14 so small and the operations were so big, they were much 15 iller than Jessica was. You also said that Mr Dhasmana 16 knew -- 17 A. -- knew Jessica because he had operated on her before, 18 and it had been okay that time, so ... 19 Q. At this stage, when was Jessica's operation fixed for? 20 A. I do not know. I think it was fairly shortly after 21 that, and within a month after that, I think. I get 22 a bit confused here because there were two showings of 23 that programme, one that was recorded for me and one 24 that I actually saw myself, and my next-door neighbour 25 came down and told me that they had cancelled all 0141 1 surgery at the BRI. She got confused. 2 Q. I think Jessica was admitted, was she not, for the 3 closure of the VSDs on 20th June 1995? 4 A. Yes. 5 Q. Did you know that by that time Mr Pawade had started 6 work at Bristol? 7 A. No, I had absolutely no idea at all. I thought he was 8 not due to start. I knew the children's surgery was 9 going to the Children's Hospital in September, and 10 I assumed he was starting work then. 11 Q. Did you ask if Jessica's operation could be postponed 12 until Mr Pawade, as you thought, would be in post? 13 A. No, I did not. The reason for that was because Jessica, 14 she had the banding around the heart. From the March 15 she had stopped needing any medication at all and 16 Dr Joffe had told me that this was because she was 17 obviously growing into the banding, and I also knew that 18 if the banding at any stage got too tight, then it would 19 kill her. So although it seemed only a few months 20 between June and September, I was extremely anxious 21 during this time because she had always been on the 22 medicines before and suddenly she did not need to have 23 them any more, and I thought that this was the sign that 24 the banding needed replacing as soon as possible. 25 Q. So time was of the essence for Jessica? 0142 1 A. Yes. 2 Q. The second operation duly took place. If we go to 3 page 14 of your statement, paragraph 34, Mr Dhasmana 4 said he had not been able to find any VSDs? 5 A. Yes. 6 Q. So he had taken the pulmonary banding off and patched 7 the reconstructed arteries? 8 A. Yes, that is true. 9 Q. You say subsequently in the statement that Dr Joffe 10 later told you in fact there was still a small VSD in 11 Jessica's heart? 12 A. That is true, but can I say, before that, I was asked to 13 phone up at lunchtime and I went to the hospital and 14 I got the nurses to phone up the operating theatre at 15 12 o'clock to find out how things were going, and they 16 actually had her open on the table and were doing echos 17 and things to try and find them, which, I mean, I was 18 appalled at that, because in the morning I had been able 19 to put everything behind me and almost forget she was in 20 this position. But after that, it was really upsetting, 21 it was devastating, actually, because when your child is 22 having an operation, you expect them to actually be 23 operating, or that is what your mind tells you, they 24 will be busy from the moment they get there and actually 25 working surgically to do it and not leaving your 0143 1 daughter open on the table which means they should have 2 known all of that before. 3 Q. You say in the next paragraph, over the page at 15, that 4 you found it quite shocking when you went to see Jessica 5 in the Intensive Care Unit at the BRI? 6 A. Yes. 7 Q. You noticed it was rather different from the Intensive 8 Care Unit at the Children's Hospital? 9 A. Yes. I thought of it as limbo land, because there were 10 adults in there as well as children and the adults were 11 totally, you know, unconscious, they were on 12 ventilators, and I just felt like it was like limbo land 13 and they would wake up and it just seemed really strange 14 and really sort of uncanny, really. 15 Q. How long was Jessica in the Bristol Royal Infirmary 16 after the operation? 17 A. After the operation? She was in the ITU for about three 18 days and she was actually out of the BRI after about two 19 weeks. 20 Q. Where were you staying during that period? 21 A. While she was in ITU I was staying in a room. After she 22 was out of ITU, I was sleeping on a cot mattress beside 23 her bed. 24 Q. Was that the room in the Bristol Royal Infirmary? 25 A. That was the nursery. 0144 1 Q. The room you were staying in when she was in the 2 Intensive Care Unit? 3 A. Yes. 4 Q. Which room were you staying in? 5 A. I cannot remember. 6 Q. It was inside the hospital? 7 A. Yes. I think it was something like the Wiltshire Room. 8 Q. Along the corridor from the Intensive Care Unit? 9 A. Yes. The reason I was slightly hesitant is because 10 there is also a Wiltshire Room as the parents' 11 accommodation at the Children's Hospital, so I thought 12 I might have confused it. 13 Q. How did you find the whole experience of being in the 14 Bristol Royal Infirmary after Jessica's operation in 15 terms of the support that you were given by the staff? 16 A. There was not, really, any support at all. I found the 17 nurses very rude to me. It seems trivial now, but at 18 the time it hurt me a great deal. It is something that 19 still upsets me even now. When you go into ITU, there 20 is a buzzer and there is a sign beside it saying "You 21 must ring this bell before you enter". I came back to 22 see Jessica at 11 o'clock at night and I decided, oh, 23 I stopped and thought "What do I do here?" but it said 24 to ring the bell so I rang the bell. 25 This nurse was extremely rude to me when I got to 0145 1 Jessica. She said "Do you always go round ringing 2 people's door bells at 11 o'clock at night?" I said 3 "I am sorry, it will not happen again". She went away 4 and came back to me and said "I still think you are 5 really rude and inconsiderate". I had been through and 6 Jessica had been through so much that day, and, you 7 know, that I found the most distressing of the lot, to 8 be treated like that. 9 Then I actually went off the ward but I did not 10 feel like I could come back and see Jessica again that 11 night. Then one of the nurses went to the smoking room, 12 actually, one of the nurses came down from her break and 13 she informed the Sister and the Sister said to me that 14 she told me to come back and she said to me she is sure 15 that nurse would not have spoken to me like that, and 16 had I not been confused, you know, and maybe I had 17 misheard what was said. I said "I have not done that. 18 I know she did". I told her I never wanted that nurse 19 after tonight working with my child again. And still 20 when I went in to see Jessica, the nurse said "I am 21 sorry you got so upset but I still think you were 22 rude". I know it is trivial, but it hurt so much, and 23 it still hurts me. 24 Q. That is something that was done which it would have been 25 easy not to have done, which obviously upset you 0146 1 greatly. Was there something which was not done which 2 you think should have been done to make the experience 3 of being in a stressful place like an Intensive Care 4 Unit in hospital better? 5 A. I just felt they should have been more accommodating of 6 the parent's needs. Basically I have only felt the way 7 that I did that particular day on the days when she had 8 had her surgery. It is just, I mean, I cannot describe 9 the actual feeling. You are mentally shut down for 10 a start. You cannot really think straight; you cannot 11 answer specific questions. I mean, when she was at the 12 Children's Hospital, I have been known to find myself 13 walking across St Michael's Hill and then thinking "Oh 14 my God, there is a car coming towards me". Everything 15 is slowed down, and I just think they should have been 16 much more accommodating than they actually were, and 17 made you feel at ease and welcome, because I did not 18 always feel I was actually welcome there either. 19 Q. So in your experience, the most traumatic time is the 20 day of the surgery on your child? 21 A. Definitely. 22 Q. Assuming the operation has gone well and the child is 23 back in intensive care, improving, was it your 24 experience that you then regained more of your usual 25 equilibrium? 0147 1 A. Definitely, yes. You can cope much better and you can 2 function. 3 Q. I think in fact, that operation in 1995, after that 4 Jessica again was discharged home? 5 A. Yes. 6 Q. That was not, unfortunately, the end of her surgery 7 experience in Bristol? 8 A. No. 9 Q. It falls outside the strict parameters of the Inquiry's 10 time-scale, but it is perhaps worth mentioning for this 11 point. In 1997, Jessica was seen by Mr Pawade, was she 12 not? 13 A. Yes, that is right. 14 Q. If we go to your statement, page 17, please, he was 15 going to repair a valve? 16 A. Yes, that is right. 17 Q. He said that Jessica had a 92 per cent -- 18 A. That should be 92 per cent to 95 per cent. 19 Q. So he gave a range, did he? 20 A. Yes. 21 Q. Of success, a band of 4 per cent, 92 to 95? 22 A. Yes. 23 Q. He specifically mentioned that there was, on very, very 24 rare occasions, a risk of brain damage? 25 A. Yes. He actually pointed that out to me, yes. 0148 1 Q. Very, very rare occasions that brain damage did result, 2 always a risk. Again, you said you felt a little rushed 3 with him, as you had done previously with Mr Dhasmana? 4 A. Yes. I felt so. I mean, I think like, when you 5 actually go to see the surgeon, you have quite a lot 6 that you want to say, and it may be that I actually 7 imagined that and if I had spoken a bit longer, he would 8 have actually answered more, but I felt that he had 9 answered all of the questions, anyway. 10 Q. You say in paragraph 43 that you had noticed changes at 11 the Children's Hospital. Do you mean there by 12 comparison with the Bristol Royal Infirmary or by 13 comparison with your first experience at the Children's 14 Hospital? 15 A. By comparison with the Children's Hospital, but 16 actually, recently a friend of mine, a child, has been 17 in intensive care in the Bristol Children's Hospital and 18 all the signs are back up again now, saying "Please 19 leave the ward when the doctors are there", and they are 20 actually told to leave and they cannot stay around with 21 the doctors any more. That was how I saw it. That is 22 a most helpful thing, because they might be speaking 23 medical speech or whatever, but you also get a lot more 24 information about your child and their particular 25 condition by actually listening to the doctors. 0149 1 Instead, now, you are shut off from it again. 2 Q. When the doctors were around, did you find that you were 3 able to pick up the atmosphere, the vibes -- 4 A. Yes. 5 Q. -- without necessarily understanding the last word of 6 what they were saying? 7 A. Yes. 8 Q. Is that a fair way of putting it? 9 A. Yes. 10 Q. Unfortunately for Jessica, even this was not the end of 11 the operative road? 12 A. No. 13 Q. Towards the end of last year, she was treated in the 14 Birmingham -- 15 A. She was treated in September 1998. She again needed 16 surgery from Mr Pawade. She needed to have her 17 tricuspid valve either repaired or replaced, it ended up 18 being replaced. She now has a pacemaker, and it was 19 from there we then got transferred to Birmingham, 20 because there was, I think it was some kind of a bug 21 flying around ITU. 22 Q. So you ended up at the Birmingham Children's Hospital? 23 A. Yes. 24 Q. Which was then a fairly new hospital? 25 A. Yes. 0150 1 Q. If we look at paragraphs 46, 45, 46 and 47, over the 2 page, please, at page 18, I think this is something you 3 are anxious to emphasise to the Panel? 4 A. Yes, I just feel the differences between Birmingham and 5 Bristol are absolutely -- well, being in Birmingham is 6 like being in a totally different world to being at 7 Bristol. When I left Birmingham, all of the work at the 8 hospital, the cardiac ward, is kept separate and the 9 children have their own specialist heart unit, which was 10 absolutely brilliant, and all of the monitoring 11 equipment was kept behind the side of the bed and they 12 had VDU screens. Whereas at Bristol on the ward when 13 they come back there are only three heart monitors for 14 the whole of the ward before you go into the 15 old-fashioned "blip-blip" things. When I came away from 16 Birmingham, I thought "What Bristol does not have now, 17 it will have in the future", because there is a brand 18 new Children's Hospital being built, opening in the 19 Year 2000. But I have since found out that Bristol are 20 not going to have -- well, what is going on now is 21 originally it was either going to be an adolescent ward 22 or a cardiac ward and they decided to give it to the 23 adolescents. I wrote a letter to Mr Ross because I was 24 absolutely incensed, you know, with everything that has 25 actually happened, to think they would be wanting to 0151 1 provide the best possible standard of care for our 2 children. He wrote back to me and he said that it was 3 not something that they were considering, although there 4 had been discussions with staff. 5 The upshot of it is that what is happening now, 6 the general surgical ward at the Children's Hospital is 7 going to be divided and the Heart Children will have 8 their own area within that ward. I am still not sure 9 whether that is good enough. I have seen the excellent 10 facilities at Birmingham, so I am only prepared to give 11 Bristol one more chance now. When it opens I will come 12 and have a look at that ward and see what I think about 13 it and if I am not happy, all of Jessica's care I am 14 going to make sure is transferred to somewhere where 15 they look adequately and deal adequately with the 16 children's problems. 17 Q. Mrs Johnson, it follows on from that that Jessica is 18 still undergoing cardiac care? 19 A. Yes, that is the only problem, because obviously if she 20 gets unwell, how am I going to drive her to Birmingham? 21 That needs a little bit of sorting out, actually, but 22 I am sure I can come to some arrangement for her surgery 23 at Birmingham. 24 MR MACLEAN: I do not want to ask you any more questions, 25 Mrs Johnson. I do not think Mr Skelton has any 0152 1 questions for you either. Before I ask the Panel if 2 they have any questions, is there anything you want to 3 say to them, the Panel, anything that I have not covered 4 or have not covered properly, that you want to say? 5 MRS JOHNSON: The only thing that I would like to emphasise 6 is that in 1993 when this first became apparent that 7 Jessica was very, very ill, I was not -- you know, I was 8 told that Mr Dhasmana was an absolutely excellent 9 surgeon, I have nothing to worry about. But since being 10 down here, I have realised through documentations 11 displayed on these screens, that they knew back in 1984, 12 and I find that so disgusting for me as a parent, you 13 know, to know that if I had taken her somewhere else, 14 things could have been different to what they are now. 15 I was also told that after the age of 2 and after 16 her second operation, my Jessica would be a perfectly 17 normal little girl who would never have to take any 18 medicines and she would be able to live a normal happy 19 life and she would never need another operation. None 20 of that has actually happened. 21 I also wanted to point out to you, when you see 22 the information on this screen, to each and every one of 23 us parents, when we see the dates on these letters, they 24 actually mean something to us, for instance, 1992, 25 anything relating to 1993, I am sorry, and you realise 0153 1 what a mess it was in at that stage. I mean, it just 2 makes me think -- well, I cannot really say. 3 Before the GMC, I believed in Mr Dhasmana, 4 Mr Dhasmana was my hero, but I also stood in the middle, 5 I could not be sure one way or the other and I decided 6 that the GMC would help me make my decision. Before 7 coming down here and trying to find out the facts for 8 myself, I believe the evidence is basically not there. 9 I do not know what you are going to find, but I have not 10 seen anything really positive to show, to come out of 11 anything that the surgeons have done. 12 MR MACLEAN: Thank you very much, Mrs Johnson. Does the 13 Panel have any questions? 14 THE CHAIRMAN: Thank you, Mr Maclean. Mrs Johnson, we do 15 not have any questions, but I would like to say to you, 16 as I have said to others, although you have helped us 17 with additional comments you wish to make, if there is 18 anything else you want to bring to our attention, you 19 know that you can let us know, whether in writing or by 20 contacting the Secretariat, or in any other way, 21 anything you wish to tell us you think might help us, we 22 would be anxious to receive. 23 But for today, we are extremely grateful to you 24 for coming and telling us Jessica's story, and thank you 25 very much indeed. 0154 1 MRS JOHNSON: Thank you. 2 (The witness withdrew) 3 THE CHAIRMAN: Mr Langstaff? 4 MR LANGSTAFF: Sir, tomorrow we meet, and again, I repeat it 5 in case it was missed earlier, at 10.30 to hear from 6 Professor Anderson about the development and morphology 7 of the heart. 8 I have two messages this afternoon. The first 9 relates to timetabling, and Mrs Hawkins, who I envisage 10 might be available on Wednesday, is now confirmed, 11 I understand, for Wednesday afternoon. 12 The second message, which I have had, I am afraid, 13 is one which gives me some considerable sorrow to 14 report: the death of Professor David Baum has just been 15 announced. He died yesterday, 5th September. He was, 16 of course, Professor of Child Health at the University. 17 He gave evidence to us on behalf of the Royal College of 18 Paediatrics and Child Health, and I know that the Panel 19 had the hope that he might further assist when it came 20 to dealing with whatever recommendations he felt were 21 appropriate. He is, we understand from the announcement 22 made by the University of Bristol today, survived by his 23 wife Angela and four sons and three brothers, all of 24 whom are distinguished in their own fields, and I am 25 sure, sir, that on our behalf, you would wish to add the 0155 1 condolences of those involved in the Inquiry to those 2 that will undoubtedly come from elsewhere. 3 THE CHAIRMAN: Yes, indeed, Mr Langstaff. It is terrible 4 news. I would hope that the condolences and sympathy of 5 the Panel be extended to Professor Baum's family. 6 Shall we then, on that unhappy note, adjourn and 7 reconvene tomorrow morning at 10.30? 8 (4.40 pm) 9 (Adjourned until 10.30 on Tuesday, 7th September, 1999) 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 0156 1 2 I N D E X 3 4 STATEMENT BY MR LANGSTAFF ....................... 1 5 6 MRS BRENDA SPICER (sworn) 7 Examined by MR MACLEAN ..................... 12 8 9 MRS ERICA POTTAGE (sworn) 10 Examined by MR LANGSTAFF ................... 47 11 Examined by the Panel ...................... 76 12 13 MRS JULIE JOHNSON (affirmed) 14 Examined by MR LANGSTAFF ................... 78 15 Examined by the Panel ...................... 124 16 17 MRS HELEN JOHNSON (sworn) ....................... 127 18 Examined by MR MACLEAN ..................... 127 19 20 21 22 23 24 25 0157