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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

   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

   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

   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

   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,

   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

   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

   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

   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

   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

   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.

   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?

   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

   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

   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

   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.

   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

   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

   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

   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?

   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.

   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?

   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?

   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.

   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,

   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.

   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.

   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

   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

   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.

   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.

   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?

   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.

   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

   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

   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

   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

   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

   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.

   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,

   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?

   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

   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

   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 --

   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?

   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

   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.

   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,

   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?

   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.

   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

   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.

   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

   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 œ25 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

   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

   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

   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,

   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

   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

   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.

   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.

   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.

   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.

   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

   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

   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

   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

   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.

   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,

   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?

   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?

   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

   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,

   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

   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

   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

   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

   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

   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

   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

   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

   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

   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

   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?

   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?

   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?

   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

   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

   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

   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

   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?

   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

   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,

   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?

   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

   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

   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?

   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?

   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

   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

   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

   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?

   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

   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.

   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

   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

   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

   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 --

   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

   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

   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?

   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

   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

   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

   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.

   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

   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

   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

   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

   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.

   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

   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?

   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

   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

   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

   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?

   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

   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.

   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

   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

   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

   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

   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

   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

   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

   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.

   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.

   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

   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

   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

   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

   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?

   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

   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.

   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

   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

   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?

   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.

   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.

   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.

   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

   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

   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

   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.

   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

   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)
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   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
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Published by the Bristol Royal Infirmary Inquiry, July 2001
© Crown Copyright 2001