Home Page Search Final Report Interim Report Evidence - Transcripts - Witness Statements - Submissions - CCNR Report and associated documents - Statistical Reports and associated documents - Background Papers - Expert Papers Inquiry Seminars About the Inquiry Help		Daily transcripts Hearing summary 17th November 1999 The Bristol Royal Infirmary Inquiry oral hearings this week focus on the Directorate of Cardiology, United Bristol Healthcare NHS Trust (UBHT). Today we heard from two witnesses, Mrs Maria Shortis, mother of Jacinta Shortis and Dr Stephen Jordan, Emeritus Consultant Cardiologist, UBHT, retired 1993. Mrs Shortis told the Inquiry about the her daughter Jacinta, who was born in November 1986 and died in January 1987 following corrective complex heart surgery performed by Mr Janardan Dhasmana at the Bristol Royal Infirmary. Mrs Shortis focussed her comments around issues regarding communications between clinicians and between patients and clinicians and the importance of audit in improving the quality of services provided by clinicians. Dr Stephen Jordan began his evidence to the Inquiry today. He was asked to comment of a series of cases which had been reviewed by Independent experts as part of the Inquiry’s Clinical Case Note Review. Dr Jordan’s evidence continues tomorrow. Eric Silove, Consultant Paediatric Cardiologist, Birmingham Children’s Hospital and Mr Philip Deverall, retired Consultant Paediatric Surgeon, attended today’s hearing as members of the Inquiry’s Expert Group.

FULL TRANSCRIPT

   1               Day 78, Wednesday, 17th November 1999
   2   (9.40 am)
   3   THE CHAIRMAN: Good morning, everyone.
   4   MISS GREY: Sir, your first witness today is Mrs Maria
   5     Shortis. Mrs Shortis is represented by Mr Lissack of
   6     counsel.
   7            MRS MARIA SHORTIS (SWORN):
   8            Examined by MISS GREY:
   9   MISS GREY: Mrs Shortis, you are here today to tell us about
  10     the life and the death of Jacinta, your daughter; is
  11     that right?
  12   A. That is correct, yes.
  13   Q. You prefer I think to be known as Maria throughout your
  14     evidence?
  15   A. I do, thank you.
  16   Q. Maria, you have given two statements to the inquiry.
  17     Could we have a look first at the first one, WIT 222/1.
  18     Is that a statement relating to Jacinta's birth, her
  19     life and then her death?
  20   A. It is.
  21   Q. If we turn, please, to page 23, is that your signature
  22     at the bottom?
  23   A. It is.
  24   Q. Are the contents of the statement true to the best of
  25     your knowledge and belief?

   1   A. They are.
   2   Q. If we turn on then to page 25, we see there your second
   3     statement; is that right?
   4   A. That is correct.
   5   Q. That deals with events after April 1995 and the events
   6     which led you to become, amongst other things, a founder
   7     member of the Bristol Heart Children Action Group; is
   8     that right?
   9   A. That is correct.
  10   Q. Again if we turn to page 52 of that statement, do we
  11     have your signature on the bottom?
  12   A. That is correct.
  13   Q. Again, is this true to the best of your knowledge and
  14     belief?
  15   A. Yes, it is.
  16   Q. If we could go back to the first statement to page 1
  17     again, please. For the sake of those who are not as
  18     familiar with Jacinta's story, forgive me if I run
  19     through the very summary events and dates in her life.
  20   A. Yes.
  21   Q. She was born, was she not, on 15th November 1986?
  22   A. She was.
  23   Q. And she was born at Southmead Hospital in Bristol?
  24   A. That is correct.
  25   Q. She was then transferred for a catheterisation on

   1     17th November?
   2   A. On the Monday, yes.
   3   Q. And that took her then to the Children's Hospital at the
   4     Bristol Royal Infirmary; is that right?
   5   A. The catheterisation took place at the BRI and then after
   6     that she was transferred to the Bristol Children's
   7     Hospital.
   8   Q. She was on the ward in the Children's Hospital. We are
   9     talking about a time during which catheterisations were
  10     still being performed at the BRI?
  11   A. That is correct.
  12   Q. On 22nd November she underwent a shunt operation
  13     performed by Mr Dhasmana?
  14   A. That is correct.
  15   Q. Finally on 6th December she was well enough, it was
  16     thought at that stage, to discharge her home?
  17   A. Yes.
  18   Q. She had to be readmitted, however, on 13th December and
  19     again came home to you and your husband on
  20     17th December?
  21   A. That is correct.
  22   Q. Finally Jacinta died, is that right, on 22nd January of
  23     the next year?
  24   A. Of 1987, yes.
  25   Q. Jacinta was, we learn from your statement, very

   1     seriously ill?
   2   A. She was.
   3   Q. If I run through the medical conditions she suffered
   4     from, heart defects, are these familiar to you from your
   5     knowledge and much experience gained at the time.
   6     Firstly, dextrocardia?
   7   A. Yes.
   8   Q. She also had atrioventricular discordance?
   9   A. Yes.
  10   Q. Transposed aorta?
  11   A. Yes.
  12   Q. A common AV canal and pulmonary atresia?
  13   A. And pulmonary stenosis.
  14   Q. I think it is right, is it not, that when you first saw
  15     Dr Joffe you were told just how seriously ill she was?
  16   A. Yes, I saw Dr Joffe at 8.30. Jacinta had been diagnosed
  17     as having some problem at about 11.00 on that morning,
  18     that is Sunday morning. So we were being given bits and
  19     pieces of how ill she was throughout the day. It was
  20     the Senior Registrar who first told us that having done
  21     the echocardiogram, he had not seen anything like it and
  22     we would have to wait for Dr Joffe's diagnosis to
  23     confirm it.
  24   Q. Perhaps we could look first then at your description in
  25     your statement of the discussion with Dr Joffe's deputy

   1     or Registrar. It is at paragraph 13 of your statement,
   2     page 7, please.
   3        You talk about seeing there a doctor in his late
   4     20s and he gave the impression to you that he was scared
   5     and he did not know what to say to you. What was your
   6     impression in general terms of the experience that he
   7     had in dealing with parents who were in the situation
   8     that you had found yourself?
   9   A. I mean I do take quite a detailed notice of people's
  10     body language and it was quite obvious -- it was a wide
  11     grimace on his face, that the news was not going to be
  12     good. If I put it in context, we had gone from
  13     a perfectly normal child when she was born to "there is
  14     a slight problem" to meeting this doctor. I think what
  15     came up to me was that he was not the consultant. He
  16     did have bad news to tell us and so in a sense I felt
  17     a responsibility to help him to give us that bad news.
  18     I had already, having spoken to my father who was
  19     a doctor, prepared myself that Jacinta would have
  20     a limited life-span.
  21        So I asked him if she would have a limited
  22     life-span. At this stage I was thinking about 10 years
  23     because to actually have to engage with that reality
  24     after you have given birth is very very difficult. He
  25     was very relieved that I asked about the limited

   1     life-span and said "Oh, no, just 2 or 3 at the most".
   2     So although I can understand his relief that we had
   3     engaged with the severity of her condition, receiving
   4     that information like that was -- I remember feeling as
   5     if I had been hit and the world just stops at that
   6     information that was given to me.
   7   Q. I think the point that comes through in this paragraph,
   8     if I may say so, is one that you seem to be attempting
   9     to make about the training or experience in
  10     communication skills, that junior doctors or relatively
  11     junior doctors in the position of this particular doctor
  12     may have?
  13   A. I think it is always difficult for doctors to break bad
  14     news and they do tend to look at things in terms of
  15     being able to cure the patient. Where you have a child
  16     like Jacinta who was so obviously sick, to break bad
  17     news is difficult and if they have not had any training
  18     in it, it is even more difficult.
  19   Q. If we go on then please, in your statement you talk
  20     about of course being, as you said, appalled by the news
  21     and the way in which it was broken. After that you took
  22     the decision to baptise Jacinta. Was that partly
  23     because you were afraid that the worst would happen
  24     shortly?
  25   A. What was difficult about this whole situation was that

   1     he gave us the news, he was relieved and then he said
   2     "We will leave you to have a cup of coffee". It just
   3     seemed like "I do not want to be left alone at this
   4     point". I was with my husband. We were left. It was
   5     that sense of disappearing.
   6   Q. What more could he have realistically done?
   7   A. I think there could have been a nurse sent in to be with
   8     us. There was a nurse with him who said nothing. I do
   9     not think parents should be left at that point. I have
  10     forgotten what it was you asked me.
  11   Q. I asked you what could have been done. I think you
  12     answered the question.
  13        I think it is right to note, I think you have
  14     perhaps been hearing some of the evidence throughout the
  15     course of the Inquiry. It is right to note that the
  16     events you talk about predate the appointment of
  17     Mrs Helen Vegoda as a cardiac counsellor at the BCH. If
  18     there had been a figure such as Mrs Vegoda whose
  19     specific job it was to talk to parents in the midst of
  20     an experience such as this and to be there if they
  21     wanted someone to talk to, did it follow from your
  22     previous answer that that would have been a welcome
  23     help?
  24   A. I did speak to Dr Joffe during this time I was in the
  25     hospital with Jacinta, for there to be someone who would

   1     liaise between parents and the cardiac team and he said
   2     at that point that that was in the pipeline.
   3   Q. If we go on, please, to page 9 of your statement, you
   4     speak there about meeting Dr Joffe. You say that he was
   5     welcoming, but apologetic?
   6   A. Yes.
   7   Q. And you then go on to talk about what he told you.
   8   A. Yes.
   9   Q. In general how did you find Dr Joffe in your dealings
  10     with him?
  11   A. I have always found Dr Joffe up until April 1995 very
  12     caring in the way he spoke to me face to face. I had
  13     some difficulties with his reactions to Jacinta's death
  14     that caused a lot of unnecessary grief, but on the whole
  15     I did respect him.
  16   Q. We will come on to the precise circumstances of his
  17     reaction to Jacinta's death.
  18        Looking at the statement again, you have described
  19     there what Dr Joffe told you about the problems that
  20     Jacinta was suffering from. If we scroll down
  21     a little --
  22   A. Could I just say that where I put "It was readily
  23     apparent that Jacinta did not stand a chance of
  24     survival", that was the conclusion I came to, I was not
  25     told that at any point, that is my impression.

   1   Q. Does it follow she did not stand a chance of survival
   2     unless something could be done medically to intervene?
   3   A. Within the first two weeks.
   4   Q. And give her such a chance?
   5   A. Within the first two weeks of her life.
   6   Q. Dr Joffe, however, went on to explain options to you?
   7   A. He did.
   8   Q. He says, according to your statement that it would be
   9     necessary to perform a shunt operation during the first
  10     week of Jacinta's life?
  11   A. Yes.
  12   Q. Why do you use the word "necessary"?
  13   A. He said it would be necessary because her duct was
  14     likely to close up, therefore she was duct dependent,
  15     therefore if they were going to do surgery it would be
  16     necessary to do it within the first week of life.
  17   THE CHAIRMAN: It is my fault, we are having a bit of
  18     difficulty hearing you, we may move the mike -- forgive
  19     me for this interruption, but we are anxious to make
  20     sure we hear.
  21   A. Is that better?
  22   THE CHAIRMAN: Much better, thank you.
  23   MISS GREY: It was necessary because, as he was outlining
  24     the options to you there was either a shunt operation or
  25     the alternative, to switch off the prostaglandin that

   1     was keeping the duct open and allow Jacinta to die; is
   2     that right?
   3   A. That is correct. I and my husband were asking these
   4     questions so the conversation was being led by us. He
   5     did say that Jacinta was a strong child, she had got
   6     a very good birth weight and that she was worth fighting
   7     for. I think both my husband and I felt that her
   8     condition was so severe that her life was not viable
   9     with life and the one question we asked was "If she does
  10     have an operation, what kind of quality of life would
  11     she have for the 2 years that was envisaged that would
  12     be her life-span?" Dr Joffe said very clearly that she
  13     would have as near normal childhood as is possible.
  14   Q. What did you understand "as is possible" to mean?
  15   A. I did not follow it up but what I heard was "a near
  16     normal childhood". I had a 2 and a half year old child
  17     at the time, my son Sam, and we made the decision to go
  18     ahead with the operation on the fact that we had been
  19     bombarded by the reality that Jacinta was going to have
  20     a limited life-span. Do we turn the prostaglandin off
  21     and she dies not experiencing our love, or do we give
  22     her 2 years of unconditional love and she can die having
  23     been loved that was the only sole decision upon which
  24     that operation, we agreed to it.
  25   Q. To say to you that she would have "as near a normal

   1     childhood as possible" could be quite a severe
   2     qualification on the "near normal" childhood?
   3   A. It could be. Had Dr Joffe said "but you must understand
   4     that every time she gets an infection she may be
   5     admitted to hospital" or "she might vomit after every
   6     time she has been given some medicine" or that "she is
   7     not going to put on weight", that would have not been
   8     a near normal childhood to me. He did not qualify it
   9     and I did not ask him to do so.
  10   Q. You did not understand, for instance, that she might
  11     fail to thrive, that is to put on weight, to grow
  12     normally, to be very vulnerable to colds, respiratory
  13     tract infections?
  14   A. That was not the picture that Dr Joffe was giving us at
  15     that stage.
  16   Q. If we turn over the page, please, we can see that in
  17     order to decide whether or not a shunt operation was to
  18     proceed first a cardiac catheterisation was planned and
  19     that Jacinta was transferred, as we have already said,
  20     to the BRI initially for that to take place.
  21        At the bottom of that page, paragraph 21, we can
  22     see that Dr Joffe tells you that you are going to meet
  23     Dr Dhasmana the following day and he says according to
  24     your statement that you were lucky to be at a "centre
  25     of excellence"; can you remember those exact words?

   1   A. He told me I was in the best unit in the country. That
   2     he had worked with Christian Bernard that I was very
   3     lucky to be there, that many parents had to travel from
   4     Wales and other places in the South West, and I was very
   5     relieved by that comment and I trusted him.
   6   Q. Maria, your statement -- this statement is dated July
   7     1999?
   8   A. Yes.
   9   Q. I think it is right also that you gave a statement to
  10     the General Medical Council; is that correct?
  11   A. Yes.
  12   Q. That would have involved you recalling these events in
  13     1997; is that right, or thereabouts?
  14   A. When I gave the statement to the General Medical
  15     Council, they very much wrote it. This statement was
  16     very much written by me.
  17   Q. So this statement then was drawn up by you some 13 years
  18     approximately after the events we have been talking
  19     about?
  20   A. Yes.
  21   Q. How good is your recollection of those events?
  22   A. When I wrote this, looking back in my diary I realised
  23     it was Wednesday, November 19th that we actually met
  24     Mr Dhasmana. I would just say that the actual events
  25     themselves I remember very clearly, the dates I may have

   1     got wrong within that first week.
   2   Q. But you are recounting at several places in your
   3     statement the precise words used by doctors in
   4     conversations?
   5   A. Yes.
   6   Q. Can you genuinely recollect those after such a gap?
   7   A. I think there are certain statements made to you when
   8     undergoing a traumatic life experience that are etched
   9     on your mind for the rest of your life, words to the
  10     effect of it.
  11   Q. Is there not a danger you replay them in your mind
  12     perhaps in slightly different fashions as time goes on
  13     and potentially false memories get etched in your mind?
  14   A. Can you show me that I have done that?
  15   Q. Clearly Maria, I cannot suggest to you that you have
  16     falsified or in any way misrecollected things. All I am
  17     seeking to do with you is to explore how certain you can
  18     be now of the words doctors used to you when you were
  19     going through this trauma. I would like you to comment
  20     on that.
  21   A. I can be sure of the content of what was said to me.
  22   Q. Because you were?
  23   A. Because I think that -- personally when I have
  24     experienced a traumatic life event, and this is not the
  25     only one I have experienced, I react in a very calm way,

   1     I am very aware of what is going on at an emotional
   2     level and I am aware of what is going on at a rational
   3     level, and there are comments which are made which are
   4     etched in your mind.
   5   Q. You mentioned a diary; how much did you record in the
   6     diary, to what extent did you draw on that when making
   7     the statement?
   8   A. Very little. I recorded a few, you know, different
   9     points.
  10   Q. But not for instance the conversations between doctors
  11     and so on?
  12   A. No.
  13   Q. You said that Dr Joffe said you were very lucky to be at
  14     a centre of excellence. I think later on in your
  15     statement you suggest that nurses as well said similar
  16     things to you; is that right?
  17   A. Yes.
  18   Q. If we turn over the page, please, we can see that on the
  19     morning of 18th November, that is the Tuesday, you were
  20     standing in the Intensive Care Unit and you met
  21     Mr Dhasmana?
  22   A. Yes.
  23   Q. Then at 11.00 you say "There was a rather more formal
  24     consultation with Mr Dhasmana"?
  25   A. Sorry, on the morning -- it was actually Wednesday the

   1     19th, we were standing in the Intensive Therapy Unit and
   2     we were ready to meet Mr Dhasmana, yes. There was only
   3     one meeting with him.
   4   Q. The impression that is given, the account that is given
   5     in your statement here and on the following page where
   6     we see rather more discussion between yourself and
   7     Mr Dhasmana, is that there was a difference of opinion
   8     between him and Dr Joffe on what the best thing for
   9     Jacinta would be; is that correct?
  10   A. Certainly there was a difference in opinion between
  11     Mr Dhasmana and Dr Joffe. I think the important part
  12     for me was the effect from a parent's perspective that
  13     that had on us as parents.
  14   Q. What do you mean by that?
  15   A. We had spoken to Dr Joffe who had said that Jacinta was
  16     worth fighting for, that there was an operation that
  17     could be done, a shunt operation, that it would give her
  18     a limited life-span of maybe 2 years and that really
  19     that is what we should go ahead with, and we agreed with
  20     him. He told us that we would be seeing Mr Dhasmana and
  21     that Mr Dhasmana would be telling us the details of the
  22     operation he would carry out and he would explain that
  23     to us. So we went to that meeting expecting to hear
  24     that information.
  25   Q. To hear the same information reinforced by the surgeon?

   1   A. Yes, we expected to hear how he was going to operate,
   2     what he was going to do and the risks of the operation.
   3   Q. And instead you heard something to the contrary, that an
   4     operation was not necessarily the best way forward?
   5   A. What he said as we walked in the door and were about to
   6     sit down, was "Had I got to you first, I would have told
   7     you that your child was inoperable. I have cancelled
   8     the operation. Why do you want to put her through such
   9     misery?"
  10   Q. What co-ordination and consultation did you get the
  11     impression had been carried out between Dr Joffe and
  12     Mr Dhasmana before that meeting took place?
  13   A. I assumed, and it was an assumption, that -- I assumed
  14     that Dr Joffe had spoken to Mr Dhasmana, that the
  15     operation had been listed for -- I think it was listed
  16     for that day and I assumed as consultants they would
  17     have spoken to one another about the process of my
  18     daughter's care.
  19   Q. It follows from what you have just been saying that you
  20     do not actually know whether or not Dr Joffe and
  21     Dr Dhasmana had an opportunity to discuss the case
  22     before you were seen by Mr Dhasmana?
  23   A. I assumed that they had discussed it. As an ex-catering
  24     manager in the NHS, I -- as a manager I would have
  25     discussed different concerns that people might have

   1     raised. I mean this is a child who is severely ill and
   2     has very little chance of survival. I rightly or
   3     wrongly assumed that the consultant and the consultant
   4     cardiologist and the consultant surgeon would at least
   5     have had a conversation about what they were going to do
   6     in her best interests.
   7   Q. If we turn over the page to page 12, please, we can see
   8     there that you had the impression that Mr Dhasmana was
   9     telling you the truth but that his communication skills
  10     were appalling. That was because he was presenting you
  11     with a conclusion, was it, rather than discussing the
  12     options with you, or what?
  13   A. I think if I put this in the context of being a parent,
  14     to be told "Had I got to you first" sounds to me a bit
  15     like a race. "I would have told you your child was
  16     inoperable", yes, I would agree with you. "She is
  17     inoperable, why do you want to put her through so much
  18     misery?" I do not as her parent want to put her through
  19     any unnecessary misery. So I felt it was blurted out.
  20     He then said "I have cancelled the operation". This
  21     meant as informed consent was concerned, as her parents
  22     we were not part of that decision-making process, it was
  23     a fait accompli and I felt we were being drawn into
  24     hospital politics.
  25        So I had to test out with Mr Dhasmana the reasons

   1     why he did not want to operate on Jacinta. I was faced
   2     with a centre, a very good centre; I was faced with
   3     people who I thought were experts; I had no reason to
   4     doubt Dr Joffe in the way that he had spoken to us, in
   5     the way he had dealt with us but I could see Mr Dhasmana
   6     was right in saying that she was inoperable and so I had
   7     to summon all my strength to say to him "Do you not want
   8     to operate on Jacinta because she is going to die
   9     anyway?"
  10        The response was that he pushed his chair back,
  11     came forward and said "I am not talking about death,
  12     I just like seeing my patients through".
  13   Q. You describe that exchange a little further in the
  14     statement at paragraph 26, if we scroll down a little.
  15     The word that you use there is "shouted". The word you
  16     have just used in describing the experience to us again
  17     was "said"; is that not more accurate?
  18   A. No, when I say he shouted it, it was his response, it
  19     was an emotional response, it was not a non-emotional
  20     response. It was not a "I am not talking about death"
  21     it was "I am not talking about death".
  22   Q. It was said with emphasis?
  23   A. Yes.
  24   Q. And it was the response perhaps of someone who is
  25     emotionally engaged in this discussion and not remote

   1     from it?
   2   A. I would have to say he was emotionally engaged in the
   3     discussion but I could not make sense of the logic of
   4     that comment.
   5   Q. You go on to say in commenting on his statement "I am
   6     not talking about death, I would just like to see my
   7     parents through": "but the implication of this was that
   8     he liked to have a good success rate". Why do you say
   9     that, because surely the natural implication to be drawn
  10     from that sentence, if I could suggest it, is simply
  11     that he does not like to see his patients die?
  12   A. That is a possibility. It was not what I picked up at
  13     that point.
  14   Q. Why is it that you thought that he liked to have a good
  15     success rate rather than he was expressing a dislike for
  16     having patients go through operations but subsequently
  17     die?
  18   A. I said to him "Is the problem the operation? Will she
  19     not survive it?" and she said "No, there is no problem
  20     with operation at all, it has a 95 per cent rate" so
  21     I could not understand then if the operation had
  22     a 95 per cent success rate for Jacinta that he did not
  23     want to operate on her.
  24   Q. Was he perhaps concerned about the quality of life that
  25     Jacinta might have afterwards?

   1   A. If he was he did not follow that through. That is why
   2     I was asking him why he did not want to operate on her
   3     and he did not follow that through.
   4   Q. So he did not discuss with you either the problems that
   5     Jacinta might have even if the operation was technically
   6     successful?
   7   A. He had said "Why do you want to put her through such
   8     misery?" and he may well have said that she would pick
   9     up infections, but if we go on I then asked him what did
  10     he want to do if he did not want to operate and he said
  11     he wanted to take her off all her drugs and see how she
  12     would do.
  13   Q. Were you ever able to achieve with Dr Dhasmana
  14     a discussion of what he meant by saying that her life
  15     might be a misery or why you were putting her through
  16     misery?
  17   A. No.
  18   Q. Can you think why that was?
  19   A. I cannot think why it was, no, I still do not
  20     understand. I do not understand -- I could not see that
  21     there was a logical conclusion that he was trying to
  22     make and I think I talk about that in the statement.
  23   Q. If we are talking about barriers to communication in
  24     that particular meeting, since it is a theme that recurs
  25     throughout your statement, what do you think the

   1     particular barriers that were operating in that
   2     discussion were?
   3   A. I do not know. I could not make sense of it.
   4   Q. If we can go back up again to look again at
   5     paragraph 25, you say at the bottom of that paragraph
   6     that you felt that he had been drawn into
   7     interdepartmental politics particularly between those
   8     two men. Why use the word "politics" there?
   9   A. I felt maybe he did not want to operate on Jacinta,
  10     purely from a management point of view, at the time.
  11     This is what I was thinking, "Well, I would not want to
  12     operate on a child if she is not going to live and it
  13     costs a lot of money and there may be another child who
  14     has a better chance of recovery and there is an
  15     emergency". These things were going through my head
  16     with a managerial hat, you know, is it money funded,
  17     because I was not expecting to be in a situation where
  18     I was told that there was not an operation.
  19   Q. Did anyone ever suggest to you or use words that
  20     suggested to you that those factors, those financial
  21     factors perhaps were influential or were a factor in the
  22     care of Jacinta?
  23   A. Not at all. They were my own views from working in
  24     a teaching hospital in London where everything was
  25     money-led and funding was at a minimum, from my own

   1     experience.
   2   Q. You have described, Maria, a sharp disagreement between
   3     these two doctors on the care of Jacinta. Can you tell
   4     us how you felt as a parent, trying to reconcile those
   5     views and decide what you and your husband should do for
   6     Jacinta?
   7   A. I felt we had been drawn into an impossible situation as
   8     the main carers of our daughter, I felt we had
   9     a responsibility for her care. I believed the
  10     consultants were there to provide a service, to advise
  11     us on her best care in her best interests and I felt, as
  12     I say, caught in the cross-fire between difference of
  13     opinion which I felt should have been settled before
  14     they came to us. If they had come to us and said "We
  15     cannot do this operation, Jacinta is inoperable, what
  16     she will go through after her operation is an amount of
  17     unnecessary suffering", we would have had to take the
  18     decision to face the reality that maybe we had to turn
  19     off the prostaglandin.
  20        It is a very emotional situation and I do not
  21     think parents should be put through that kind of
  22     unnecessary grief.
  23   Q. Are there any wider lessons that you would like to draw
  24     to the Panel's attention from this experience on the
  25     specific issue of communication we have just been

   1     talking about?
   2   A. Yes, I think on the point of communication parents need
   3     to be given, can I say, genuine communication that does
   4     not give false hope. I am not talking about brutal
   5     reality, I am talking about genuine honest information
   6     where a child so severely ill as Jacinta was, that maybe
   7     the best thing is to take her home, certainly not to be
   8     drawn into a cross-fire situation where you have
   9     a disagreement over your child's life.
  10   Q. The counter argument might be that whilst you were
  11     caught in the most distressing of cross-fires, as you
  12     have just described, this was a case at least in which
  13     the differing points of view as to how Jacinta's case
  14     might be managed were in some shape or form brought to
  15     your attention.
  16        Is there a danger in the contrary course that
  17     doctors might make all the important decisions behind
  18     closed doors without involving the parents?
  19   A. I think if Dr Joffe and Mr Dhasmana had sat down with us
  20     we could have worked out the proper course of care for
  21     Jacinta; they did not.
  22        We saw one doctor who psyched us up as it were for
  23     one process of care and then another doctor who pulled
  24     the rug from under our feet and we were left -- well,
  25     I was left thinking "How do I do the best for Jacinta

   1     with a consultant who obviously does not want to operate
   2     on her, but will not say, 'Yes, she will die and if we
   3     do operate she is not going to have a good quality of
   4     life'?" I was not being given the information I needed
   5     by Dr Dhasmana to come to a rational and reasonable
   6     decision for Jacinta and his last comment was "Well, you
   7     have been promised the operation, I will have to do it,
   8     so I will have to do it anyway". I did not think it was
   9     a professional way of behaving as a consultant cardiac
  10     surgeon.
  11   Q. If we turn over the page we can see these events
  12     described in your statement. We see there that
  13     Mr Dhasmana is suggesting that you withdraw the
  14     prostaglandin and see what happens and the choice that
  15     you felt that presented you with. Then at paragraph 28
  16     you describe the conversation you have just told us
  17     about Mr Dhasmana having promised the operation and
  18     saying that he supposed he would have to do it.
  19        At the end of the discussion with Mr Dhasmana, is
  20     it right then that you had reluctantly agreed to
  21     withdraw the prostaglandin and to see what happened to
  22     Jacinta after that happened but obviously to restore the
  23     drug if she became cyanosed and was not coping?
  24   A. I felt I been plunged into a nightmare, that my
  25     daughter's life was definitely on the line, that

   1     Dr Joffe had made it very clear that she would be dead
   2     within 48 hours, he used the word "succumb" and as her
   3     mother I was not ready I think at that point for her
   4     death, I was not ready for her death. So I was faced
   5     with no operation. So what did Mr Dhasmana want to do?
   6     I tried to ask him if he did not want to operate, what
   7     care did he think Jacinta needed? In his saying
   8     "I would like to take her off all her drugs", again
   9     Dr Joffe said "She will die within 2 days if that
  10     happens."
  11        I felt if I took some control as her mother and
  12     said "Okay take her off all her drugs but if she becomes
  13     cyanosed I would like to have the prostaglandin
  14     restored" so I can make the decision as her mother or we
  15     as her parents can make that decision to end her life.
  16   Q. If we look at Medical Record 2388/19. Maria has,
  17     I think, given consent for the use of the medical
  18     records. We can see halfway down that page a record
  19     written by Mr Dhasmana of a discussion with yourself and
  20     your husband:
  21        "Talked to parents about extremely difficult
  22     problem here. Shunt is needed to provide blood flow to
  23     the lungs which at the moment is being provided by the
  24     duct with or without the need for prostin. Decided to
  25     see if patient can manage without prostin infusion, if

   1     not I would do the shunt".
   2        Do you think that is an accurate record of the
   3     discussion that you recollect taking place?
   4   A. There was one point when I said to Mr Dhasmana "If you
   5     take Jacinta off the drugs she will die?" and he said
   6     "I have seen patients walk in here at the age of 18
   7     with a duct still intact", to which I replied "But
   8     I suspect they did not have five major heart defects".
   9        The actual conversation and getting to this
  10     decision which, written there is, yes, that was the
  11     outcome, yes, took a huge amount of work and
  12     negotiation.
  13   Q. Going back to your statement. You have described at
  14     paragraph 29 -- this is page 13 -- the course of events
  15     when the drug was stopped; you recollect that it was
  16     perhaps closed off, I think the implication is from your
  17     statement on 18th November, but that there was
  18     a particular incident on the 19th where matters came to
  19     a head?
  20   A. As I recollect, I stayed with Jacinta that day and I am
  21     afraid I have got the dates wrong, so it would be the
  22     19th and the 20th. As I remember it, and I have not
  23     read her notes until today, she did not seem any worse
  24     without her drugs for that first day. As I remember it
  25     I was not going to come back in the evening on the next

   1     day, but I did and she was very cyanosed.
   2   Q. I think I said the 19th, your statement relates this
   3     incident occurring on the 20th, but I think having
   4     looked at the medical records we can agree it was
   5     probably the 19th?
   6   A. Yes.
   7   Q. If we go over the page we can see the incident itself
   8     where you say Jacinta had been moved to the other end of
   9     the ward. She was clearly very cyanosed and you formed
  10     the clear impression she had been left to die?
  11   A. It was a gut feeling that I had left her in the hospital
  12     near other babies and when I had gone in that evening
  13     and I was not expected to go in, they were quite
  14     surprised to see me. Jacinta had been moved to the end
  15     of the ward and she was very much in isolation and my
  16     gut instinct seeing her cyanosed was, that possibility,
  17     that they had left her there to die.
  18   Q. If we can go back to the medical record we were looking
  19     at, at Medical Record 2388/19. We can see firstly that
  20     the note we have just looked at in which Mr Dhasmana is
  21     saying if she cannot manage without prostin he would do
  22     the shunt?
  23   A. Yes.
  24   Q. He is outlining a course of management there that
  25     involves not leaving a child to die, but in fact

   1     operating if things do not go well after the trial; is
   2     that not right, is that not what had been agreed with
   3     him?
   4   A. As I said, he said "I suppose I will have to do the
   5     operation as you have been promised it".
   6   Q. If we go down a little further to the rest of the note
   7     here, I think I can probably read it out, it is the 19th
   8     at 5.00:
   9        "Prostin stopped, IV tissued" I think that means
  10     the cannula would no longer be able to insert prostin
  11     into the vein.
  12        Then the note says "Remains pink pro tem. If blue
  13     or transcutaneous oxygen goes down", that is the little
  14     downward arrow, "restart prostin"?
  15   A. Yes.
  16   Q. So the notes again do assume that if things go wrong the
  17     drug will be resumed?
  18   A. Yes.
  19   Q. We have a note at the bottom: "9.45 pm, rapid arrest,
  20     central cyanosed also associated with a drop in
  21     transcutaneous oxygen to 7 to 12".
  22        I think that is a reading that would be consistent
  23     with severe cyanosis?
  24   A. Yes.
  25   Q. "Restart prostin".

   1        There is a note of an incident in which Jacinta is
   2     very severely cyanosed indeed and that would accord with
   3     your recollection, would it not?
   4   A. My experience was that I went into the hospital. I was
   5     not expected to go in that evening. They were surprised
   6     to see me. I saw Jacinta at the end of the ward.
   7     I went up to her, she was severely cyanosed, that was
   8     about 8.00 in the evening, and I insisted very calmly
   9     for almost an hour -- I negotiated with Mr Dhasmana that
  10     Jacinta be restarted on the prostaglandin -- that is
  11     what I thought the drug was -- if she had become
  12     cyanosed and it took an hour for them to call a doctor
  13     to put her on that drug and then she rapidly turned
  14     round and became pink.
  15   Q. I think for the sake of completeness we ought to look
  16     also at page 120. If we scroll down the page. This
  17     just gives us the date, Maria. Again, the 19th, night.
  18     The relevant entries are over the page, please,
  19     page 121.
  20        We can see on the fourth line: "Not for theatre
  21     this afternoon, carbon dioxide monitor applied,
  22     prostaglandin is reduced". Then at 8.00 pm
  23     a discrepancy there between the 5.00 pm in the note we
  24     saw before, but "IV tissued and prostaglandin stopped
  25     and discontinued".

   1        Then it talks about, dropping four lines down
   2     "Surgery postponed to see how Jacinta copes without
   3     prostaglandin".
   4        At around the same date, again not quite the same
   5     time, there is a record of Jacinta being "cyanosed plus
   6     plus", so severely cyanosed. Dr Hicks is informed and
   7     there is a recommencement of the prostaglandin
   8     infusions?
   9   A. Yes.
  10   Q. I think the point that appears to be documented in the
  11     records is that there was a plan to restart
  12     prostaglandin if Jacinta became cyanosed?
  13   A. Yes, there was a plan because I negotiated it with
  14     Mr Dhasmana, there certainly was a plan. The fact that
  15     it took me an hour to insist to the nurses that that was
  16     what the plan was and it took an hour before Dr Hicks
  17     came up to give her the prostaglandin was an hour in
  18     which I formed the impression that she had been left to
  19     die.
  20   Q. Can you remember, Maria, whether or not they had to
  21     insert a new line to resume the prostaglandin?
  22   A. No, I do not. My concern was getting a doctor to
  23     restart the prostaglandin. So if you are asking me now
  24     from memory, no, I was just pleased to see the doctor,
  25     I was not concerned, as I was in a sense in one of the

   1     best units in the country, that the doctor was not going
   2     to do anything but the best for Jacinta. It was
   3     actually getting him up to do it and I think the nurses
   4     were a bit unsure what to do because Mr Dhasmana was not
   5     there and here was a parent saying "This is what we have
   6     planned, please would you go and get a doctor to carry
   7     out what was planned?"
   8   Q. Were they trying to get hold of Dr Dhasmana and failing?
   9   A. My recollection is there is a sense of: what do we do
  10     here?
  11   Q. Perhaps we could go back to your statement, then,
  12     page 14. You talk about seeing Dr Joffe again after
  13     this incident. He apologised for what had happened in
  14     the course of your meeting with Mr Dhasmana?
  15   A. Yes, and he apologised for what had happened the night
  16     before.
  17   Q. You said earlier in your statement that Dr Joffe was
  18     always apologising?
  19   A. Well, he met us on an apology he had been out all day.
  20     That was fair enough, that was very kind. He was very
  21     kind, but he was very apologetic.
  22   Q. Here at the bottom of paragraph 31 -- I made reference
  23     to this earlier -- where you say that additionally you
  24     had been told many times that the BCH was a "centre of
  25     excellence" both by Dr Joffe and the nurses and you say

   1     that you believed the staff were skilled experts in
   2     cardiac surgery even if they did not have much skill in
   3     talking to parents.
   4        There was obviously a contrast there between the
   5     technical expertise of the staff and perhaps their
   6     emotional skills?
   7   A. I can put this in some context for you and that having
   8     grown up in a medical household with a father who was
   9     a doctor. I have to say that he always took the view
  10     that surgeons may be technically skilled but they were
  11     not terribly good at communications skills, so that is
  12     the context in which I placed that.
  13        In one sense I could forgive them the lack of
  14     communication to some degree, because you know they were
  15     not connecting on that level particularly.
  16   Q. When you say they were "not connecting on that level
  17     particularly", is there a wider point you are making
  18     there about the nature of communication skills and
  19     medical training?
  20   A. Yes, of course there is. I think the point I would be
  21     making is the academic technical perspective that
  22     obviously surgeons have to have, they have to have
  23     technical expertise to do the job they do and to give
  24     Mr Dhasmana his due I think he, if only he could have
  25     followed through his communication skills he was very

   1     much trying to paint a picture of the reality of
   2     Jacinta's condition. I think had he followed that
   3     through I would not perhaps be here today.
   4   Q. Followed it through?
   5   A. To its natural conclusion. That, yes, she was going to
   6     die. That, yes, she would have a poor quality of life
   7     and that "Perhaps", you know, "I should have been there
   8     with Dr Joffe. I am sorry that you have been put
   9     through this mismanagement". I think it was
  10     a mismanagement of communication.
  11   Q. You think Mr Dhasmana would have done better in your
  12     eyes to have been blunter and more forthcoming?
  13   A. I do not know whether he had to be blunter but I think
  14     to have put it in context -- it appeared to me that they
  15     did not know how to communicate. Had he been able to
  16     either have come with Dr Joffe to see us because Jacinta
  17     was such a rare case and she was so severely ill,
  18     I think from that point of view, engaging with parents
  19     that this is a child of 1 in 3 million, that the
  20     information given to us at that point should have been
  21     with both of them not with one and then the other.
  22        I do feel some sympathy for Mr Dhasmana, strangely
  23     enough I do, that he could not follow through the
  24     questions I asked him about whether she was going to die
  25     and that is why he did not want to operate on her.

   1   Q. We know that after the failed trial of withdrawal of
   2     prostaglandin and its restoration, the shunt operation
   3     was carried out?
   4   A. Yes.
   5   Q. And Jacinta had a difficult postoperative period but --
   6   A. I did not think she did, no, I thought she came through
   7     intensive care quite quickly really. That was not
   8     difficult. She was out of intensive care within I think
   9     two, three days. It was after discharge on 6th December
  10     that we had problems again.
  11   Q. I think what I was referring to was at paragraph 16.
  12     Just to put my comment in context, at the danger of
  13     paraphrasing a statement, you will have to forgive me.
  14     If we look at paragraph 36 we can see Jacinta came
  15     through ITU very quickly and did well, which is just as
  16     you have been saying. You mention at the bottom about
  17     an incident which alarmed you in which she turned
  18     visibly grey?
  19   A. Yes, it alarmed all of us, we all witnessed it, yes.
  20   Q. If we turn over the page we can see that on
  21     13th December you again had reason to be alarmed by
  22     Jacinta's condition and she had to be readmitted to
  23     hospital in an ambulance?
  24   A. Yes.
  25   Q. You talk about an incident at the bottom of that

   1     paragraph, paragraph 38, in which you had an interchange
   2     with a young female doctor which again you found
   3     unhelpful. Why did you use the word "sneered"?
   4   A. I think one of the problems that we encountered was
   5     assumptions being made about us. My husband at the time
   6     of this incident -- we had just bought a huge big old
   7     house and he was developing it (the only room that was
   8     done in the house was Jacinta's room) and he had been
   9     knocking through something downstairs. In Victorian
  10     houses there is a lot of dust and he wondered whether or
  11     not the dust had been the cause of Jacinta's coughing,
  12     whether it got to her lungs.
  13        At that point he had just finished, it was late at
  14     night and we had rushed into the hospital. He had not
  15     had time to change, and this was not just the first
  16     incident that he offered advice, was looked at and
  17     sneered at and assumptive values were made about him
  18     because of the way he was dressed, I would have to say.
  19     I do not know if he would agree; he is here -- no, he is
  20     not, he has gone out.
  21        It was dismissive, it was a very sensible thing to
  22     say and it was completely dismissed.
  23        I observed that with other people who asked
  24     questions, as I was in the ward people would be
  25     dismissed according to their, if you like, social

   1     status, this is my own impression.
   2   Q. Sticking to this particular incident, the difference
   3     between a sneer and a smile can be quite a small one,
   4     can it not?
   5   A. It was not a smile it was a put down. It was a very
   6     genuine put down.
   7   Q. If you are making a point about pushing people down
   8     because of their social status, which is what I think
   9     you have just said?
  10   A. It is what I am saying, yes.
  11   Q. That is probably a problem that is not confined to
  12     doctors, is it?
  13   A. I am not saying it is, I am just saying it is not
  14     helpful when you have a very severely ill child who has
  15     gone limp, you rush her into casualty and you try to
  16     give some information that you regard as important or
  17     a possibility that that is what could have happened and
  18     you receive a put down; it is not helpful.
  19   Q. Going on to paragraph 39 of your statement, over the
  20     page please page 18. You had again a difficult time
  21     from a communication and information point of view
  22     because you were kept waiting for a long period of time
  23     before you were seen by anyone?
  24   A. Yes.
  25   Q. If we scroll down, please, we see Dr Joffe's explanation

   1     of Jacinta's condition at that stage. You say there
   2     that:
   3        "Dr Joffe stated the shunt had brought on
   4     Jacinta's heart failure"?
   5   A. It is in her notes. After Mr Dhasmana operated and we
   6     went to see him after Jacinta had come out of the
   7     operating theatre, he was very pleased with how the
   8     operation had gone and he said he put in an extra large
   9     shunt which should keep her going for some time.
  10     Dr Joffe explained that the larger shunt sometimes
  11     causes heart failure in children, which was not
  12     explained to us before the operation was done that that
  13     is what they were going to do.
  14   Q. It had been explained to you that a shunt was going to
  15     be placed clearly?
  16   A. Yes.
  17   Q. You are saying that the associated risk of heart failure
  18     was not explained to you; is that correct?
  19   A. Yes.
  20   Q. What discussion, just to go back on it again, we have
  21     agreed I think you were not told about risks of Jacinta
  22     not thriving or respiratory tract infection. What
  23     discussion of any was there of the possibility of heart
  24     failure?
  25   A. There was not any.

   1   Q. If we go to the medical notes because you have just
   2     referred to that information from Dr Joffe being in the
   3     medical notes?
   4   A. Yes.
   5   Q. If we could look please at page 8. This gives us the
   6     first page, it is the discharge summary. It is sent
   7     then to your GP. The first page, if we scroll down, you
   8     will see just sets out the course of events until after
   9     Jacinta is discharged the first time round.
  10        If we turn over the page please we can see,
  11     continuing the account of her progress on ITU before she
  12     is discharged for the first time, there is a mention
  13     there of "signs of heart failure probably as a result of
  14     the large shunt".
  15        That is associated in fact with the first period
  16     of ITU before she was discharged for the first time.
  17     Were you told about that at the time?
  18   A. No.
  19   Q. If we go down to the last paragraph on that page,
  20     Dr Joffe writes that:
  21        "The situation was discussed fully with
  22     Mrs Shortis. It is likely that Jacinta will manage with
  23     this shunt for some time, possibly a few years."
  24        Would you agree that that was discussed with you?
  25   A. Dr Joffe came right down the corridor as I was holding

   1     Jacinta and -- when I say "shouted" because he was
   2     behind me -- he said "I have very good news for you,
   3     Mrs Shortis, Jacinta will live until she is 7".
   4   Q. Then he goes on: "though she would remain prone to
   5     respiratory tract infections and may not thrive."
   6        What discussion of that, if we have not covered it
   7     already?
   8   A. Going on from him saying to me: "Mrs Shortis I have good
   9     news for you, she will live until she is 7". I turned
  10     round to him and said "I do not think that is good news,
  11     Jacinta has not put on weight since her operation, she
  12     has vomited every feed, I cannot see beyond 3 months.
  13     If you are telling me she will live until she is 7 she
  14     will, one, know that she is dying, that is not good news
  15     for her. I can manage 2 years because it will be our
  16     grief not hers and she will die not knowing that she is
  17     dying at the age of 2 hopefully", and I did say to him:
  18     "what happens if she dies within the next -- before she
  19     is 3 months old and I come back to you and say 'but you
  20     said she would live until she is 7'". So I did the
  21     discussion that she may not thrive; I said it was not
  22     fair on him, doctors to give out arbitrary numbers like
  23     that.
  24   Q. Do you think that this information to your GP contains
  25     anything then that you were not told at the time from

   1     looking at this now?
   2   A. I was not told by Dr Joffe that she may not thrive.
   3     I could not see how Jacinta could live in the state that
   4     she was in and the care that I was giving her every day
   5     when she was not thriving, it was obvious to me that she
   6     was going to die. That was not there what they said,
   7     what he said: "she will live until she is 7", that is
   8     not saying "she is going to die".
   9   Q. If we go back to your statement please at page 19, we
  10     can see at paragraph 43 the difficulties that you had
  11     with Jacinta when she returned home, that she "developed
  12     stomach cramps, became constipated and continued to
  13     regurgitate every feed and it took some 2 hours to feed
  14     her". Over the page you say that the side effects of
  15     the drug she was on were not explained to you; is that
  16     right?
  17   A. They were not and I did ask at the time because from the
  18     moment she started taking the dioxin she started
  19     vomiting a lot and I telephoned the hospital and I did
  20     say to them "Jacinta is being very sick", the reply was
  21      "babies are sick", I said "not this sick". I did ask
  22     for the side effects and I was not given an answer.
  23   Q. Is there a possibility that the question of side effects
  24     gets rather lost in the enthusiasm, as it were, to see a
  25     child continue to survive. The assumption may be that

   1     provided the child is still alive that is what we have
   2     to achieve and there is not enough discussion of the
   3     quality of life?
   4   A. It depends which perspective you are looking at. As the
   5     mother of my daughter I very much wanted her to live.
   6     I very much wanted her not to have five major heart
   7     defects.
   8   Q. Perhaps I should rephrase the question, Maria: do you
   9     feel that in your discussions with the doctors there was
  10     enough emphasis placed on informing you and discussing
  11     with you the quality of Jacinta's life?
  12   A. No, no, I do not.
  13   Q. What was the focus of the discussions instead, then?
  14   A. It was the desire that she would make it. I can put
  15     this again in context: Dr Joffe had made it very clear
  16     it was a palliative operation, but he also said to me
  17     that perhaps in the future there was a grain of hope
  18     that there might be an operation she could have, which
  19     I did not actually want to hear because I felt that this
  20     is drawing out an agony for her. She was suffering in
  21     very real way for the six weeks she lived, or seven
  22     weeks that she lived after the operation. I do not
  23     think they were looking at the reality of her condition.
  24   Q. You go on at paragraph 45 to describe Jacinta's death.
  25     There is no need, unless you would like to, to read that

   1     out.
   2   A. No.
   3   Q. At paragraph 46 you talk about Dr Joffe's reaction. You
   4     say there that he did not offer you any condolences; why
   5     do you say that?
   6   A. I expected Jacinta to die; I cannot say I expected her
   7     to die on that day, but she was extremely ill. My
   8     father described her as a child who looked as though she
   9     had marasma, an emaciated child, just from the
  10     photographs he had seen of her. So when in fact she did
  11     die -- which I am very glad she died at home and had
  12     a peaceful death -- after I had telephoned my father to
  13     tell him (I obviously was in a state of shock at that
  14     point), I telephoned the hospital and spoke to a nurse
  15     and told her that Jacinta had died and I think, I am not
  16     quite sure whether Dr Joffe telephoned me or
  17     I telephoned him later the next day, but what I was
  18     expecting was "I am very sorry, Jacinta has died, but
  19     she was a severely ill child". Instead he said "I am
  20     surprised Jacinta has died, she should not have done",
  21     and then he said "but you always thought that she would
  22     not survive for very long", which in a sense was right
  23     but I was surprised; I was expecting to hear "I am sorry
  24     but it was to be expected".
  25        The result of that was that I felt as if I had

   1     killed her and I needed then to -- it was awful, you
   2     know at the time a child dies, death is such a big
   3     reality it is almost unreal and I needed to know that my
   4     care for her had not caused her death. So, much against
   5     my husband's wishes, I asked for a postmortem to be
   6     carried out on her.
   7   Q. I think you link in your statement the decision to ask
   8     for a postmortem to that response from Dr Joffe?
   9   A. Yes.
  10   Q. Why is that?
  11   A. Because he did not expect her to die. I did expect her
  12     to die from the way in which she was suffering.
  13   Q. So you were worried that if he had not expected it that
  14     might be something that you or your husband had been
  15     doing?
  16   A. I felt the burden was being put on us as parents, that
  17     it was our care which had caused her death rather than
  18     the five major heart defects she was suffering from. He
  19     was still the expert, if the expert is telling me that
  20     a child with five major defects should still be living,
  21     then where does the responsibility lie.
  22   Q. Would it be fair to suggest that from Dr Joffe's
  23     perspective he might simply have been expressing a more
  24     optimistic faith in the success of the shunt procedure
  25     that had been carried out?

   1   A. I cannot speak for Dr Joffe, I imagine it was an
   2     academic perspective he was coming from and not one of
   3     a bereaved parent.
   4   Q. Maria, I have been asking you a number of questions over
   5     a long period of time. If you would like a break please
   6     say so, whether now or at any other time.
   7   A. I am happy to carry on.
   8   Q. After Jacinta's death there was a continued contact, was
   9     there not, with both Dr Joffe and to some extent
  10     Mr Dhasmana?
  11   A. I felt, as I alluded to it earlier on, that although
  12     I was not impressed by their communication skills
  13     I still believed they were experts in their own right
  14     and therefore I wanted to write to Mr Dhasmana and to
  15     Dr Joffe to thank them for what they had done. I did
  16     not feel I could raise the unnecessary grief that I had
  17     felt, that was something I did not know how I was going
  18     to deal with.
  19        So, yes, there was some contact. I certainly
  20     wanted to read the postmortem to understand and try to
  21     understand -- I think to look at Jacinta she was a very
  22     beautiful baby she really was very pretty and to look at
  23     her it was very difficult to believe she had such
  24     serious heart problems. Therefore I felt I had to read
  25     this postmortem to understand.

   1   Q. So you asked for a postmortem to be carried out. You
   2     arranged it, is this right, to talk through it or to see
   3     it in the presence of Dr Joffe?
   4   A. I did, yes.
   5   Q. That was at your initiative, was it?
   6   A. Yes.
   7   Q. If we could look please at page 64 of the medical
   8     records; do you have that?
   9   A. Yes.
  10   Q. That is a letter that you and your husband wrote to
  11     Dr Joffe, is that right?
  12   A. It is.
  13   Q. You set out there some very personal things about
  14     Jacinta's funeral?
  15   A. Yes.
  16   Q. You also thank Dr Joffe firstly for explaining the
  17     results of the postmortem and also thank him for the
  18     help and the courage he gave you, express appreciation
  19     and suggest that Jacinta could not have been in better
  20     hands; is that a fair summary of your feelings at that
  21     time?
  22   A. In the context that I believed I was in one of the best
  23     units in the country, yes. You know, yes, as I say,
  24     I had spoken to him, for instance about the fact that he
  25     had said she would live until she was 7. I was able to

   1     talk to him and say what I thought and he listened to
   2     that. We may not have agreed, but all of this was in
   3     the context that I was in one of the best units in the
   4     country and he was someone who it was easy to talk to.
   5   Q. If we look at page 65 of the records we can see there
   6     I think Dr Joffe's reply to your letter and that of your
   7     husband, thanking you for the letter and also
   8     suggesting, firstly, that he would be happy to see you
   9     again to discuss Jacinta's problems and suggesting
  10     a time that you can talk without the presence of the
  11     students. That was a reasonably considerate offer
  12     perhaps?
  13   A. Yes.
  14   Q. When you say that Dr Joffe did not offer you condolences
  15     in the initial telephone conversation which you have
  16     described, do you think that is something that he
  17     perhaps made amends for by the letters we have just
  18     seen, or those two meetings we are discussing?
  19   A. I spoke to him -- I do not think so there particularly.
  20     I did speak to him in 1995 and talked to him about that
  21     and he did write to me and say that he was very sorry if
  22     anything he had done had augmented my grief. I do not
  23     think he understood the impact of the words at that time
  24     on me as a parent.
  25        So I think it was this situation, that parents are

   1     living in a framework of emotional literacy and that the
   2     academic perspective of "well, she should not have died"
   3     is not helpful at the point where she has died and
   4     actually saying "I am very sorry that she has died"
   5     would have caused me not to have needed a postmortem.
   6     I think that is the point I am making.
   7   Q. Running through your continued contact with Dr Joffe,
   8     I think he arranged for genetic counselling so as to try
   9     and allay some of the concerns you might have had about
  10     the possibility of repetition of this?
  11   A. Yes.
  12   Q. If we look at page 44 we can see you writing after that
  13     had been done and commenting on the discussion you had
  14     with Dr Joffe. You found it a tremendous help; was that
  15     right?
  16   A. Going through the postmortem was a huge help to me. It
  17     was a huge relief to read that in fact she did have
  18     these five major heart defects and she had congestive
  19     heart failure, yes, and that he was there and was
  20     allowing me to do that. Yes, it was very helpful.
  21   Q. You say: "It was very kind of you to give up so much of
  22     your time to do this"?
  23   A. I do not know why I said that.
  24   Q. Did you get the impression that he had been generous and
  25     helpful in his time?

   1   A. I think he probably spent an hour with me and I imagine,
   2     having come up as I have in a medical household,
   3     consultants do not spend much time -- one assumes they
   4     do not have much time. Yes, I would say he gave me an
   5     adequate amount of time and I was acknowledging that.
   6   Q. I think you then kept in touch with Dr Joffe in fact, if
   7     we look at page 37?
   8   A. Yes, that was the last that I wrote to him.
   9   Q. So you felt sufficiently kindly towards him to write and
  10     tell him about Patrick's birth?
  11   A. Yes.
  12   Q. Dr Joffe I think acknowledged that at page 36, where he
  13     wrote back and hoped that he would give you much joy in
  14     the future. Finally on contact with Dr Joffe, I think
  15     your father as well wrote to him; is that right?
  16   A. He did, yes.
  17   Q. Can we look at page 73, please? He speaks about --
  18   THE CHAIRMAN: I think we need to take the address off the
  19     top first, do we not?
  20   MISS GREY: Thank you. He suggests that Dr Joffe gave him
  21     "tremendous" -- that is you and your husband --
  22     "support and encouragement and made the difficult
  23     decisions and realisations so much more easy".
  24        That was an impression that your father appears to
  25     have got from you; do you think you would have conveyed

   1     him that impression?
   2   A. I think there are two levels that are operating here.
   3     My father being a doctor understood the pressures
   4     et cetera and the work of doctors and would always write
   5     in that kind of vein.
   6        He telephoned me just after Jacinta died to say
   7     that he had found the whole process extremely
   8     difficult. He was 200 miles away, he had heart trouble
   9     himself and died shortly afterwards, but he just made
  10     the comment that he could not work out why they had
  11     decided to operate on Jacinta. He said: "I think they
  12     have lied to you but it may have been a compassionate
  13     lie and in this situation it is always very difficult to
  14     know what to do", but he did use those words. That
  15     would not stop him from writing to the doctors in
  16     appreciation of their efforts, you know, so there were
  17     two.
  18   Q. He was conveying, was he, the feeling that you had been
  19     given a falsely optimistic prognosis for what would
  20     happen to Jacinta after an operation?
  21   A. Absolutely, and he was saying to me -- he was 200 miles
  22     away he had actually offered to come up to speak to the
  23     doctors and I had said to him -- he had had a heart
  24     attack earlier that year and I felt it was too
  25     emotionally stressful, and I said: "I need you on the

   1     end of a telephone so I can telephone you and work out
   2     with you", just on an emotional level I needed him there
   3     as a support. He said it was a very difficult situation
   4     and that he felt they had given me false hope and that
   5     it was a compassionate lie, but he did not know why they
   6     had decided to operate.
   7        Taking that aside, he also saw that they had made
   8     their decisions and that difficult decisions do not
   9     preclude thanking people for what they have done.
  10   Q. If we look please at page 67, we can see there a letter
  11     now from Mr Dhasmana to you?
  12   A. Yes.
  13   Q. He is obviously expressing his condolences there to you,
  14     but he says:
  15        "Even though I knew that Jacinta's cardiac
  16     condition was inoperable"; so he is setting out there,
  17     is he, the considerably more pessimistic view he took of
  18     Jacinta's condition?
  19   A. Yes.
  20   Q. Was the inoperability something that was reinforced or
  21     made plain to you by Mr Dhasmana at the time?
  22   A. It was made plain to us that she was inoperable but he
  23     was going to do the operation -- we were not part of the
  24     decision-making process. There was an operation; there
  25     was not an operation; there was an operation; we were

   1     not part of that process. So, yes, I mean I believed
   2     she was inoperable but I did not know how to deal with
   3     that situation effectively.
   4   Q. To draw the conclusions that followed from it perhaps?
   5   A. No, not to draw the conclusions that followed from it,
   6     I was asking them to do that and they were not drawing
   7     the conclusions that followed from it so I was stuck,
   8     I felt I was stuck.
   9   Q. If we look please at page 66, this is your response to
  10     Mr Dhasmana's letter. You say there that you did know
  11     from the beginning that her condition was inoperable?
  12   A. Yes.
  13   Q. And that the overall feeling you put was:
  14        "Without your determined efforts we may not have
  15     had her with us for even 9 weeks."
  16        Would it be fair to say that at that time at any
  17     rate the overall feeling was gratitude that Jacinta had
  18     been with you for some period of time at least?
  19   A. I think I was recognising the fact that he had done the
  20     operation, that he was pleased with how the operation
  21     had gone. What I was not doing was making clear my own
  22     feelings because he had been the person, as I say an
  23     expert cardiac surgeon, who had I think been put in
  24     a very difficult position himself by the non-discussion
  25     at Jacinta's management and had felt obliged to carry

   1     out an operation that he may not have carried out had he
   2     got to me first and I think that letter is written in
   3     the spirit of -- he did actually carry out an operation
   4     perhaps against his better judgment and that that gave
   5     us those weeks of life.
   6   Q. Maria, I am shortly going to come on to the question of
   7     your second statement and the events that led to you
   8     being involved in the campaign to set up a public
   9     inquiry. It might be appropriate first to take a short,
  10     perhaps a 10-minute break?
  11   THE CHAIRMAN: Yes, shall we say 10 minutes until 11.15?
  12     Thank you.
  13   (11.05 am)
  14               (A short break)
  15   (11.15 am)
  16   MISS GREY: Can we have on the screen, please, WIT 222/25?
  17     This is your second statement, Maria. You describe
  18     there your reinvolvement with the BRI from April 1995
  19     onwards and the events that led you to become concerned
  20     in the campaign to obtain a Public Inquiry.
  21        Just looking at that page, the first instant that
  22     you report there is watching Dr Bolsin on a TV
  23     programme, and after that, seeing Dr Bolsin at his home
  24     on 8th April 1995?
  25   A. Yes.

   1   Q. You set out in the first few pages of your witness
   2     statement in some detail the account that Dr Bolsin gave
   3     to you at that stage.
   4        Why was that important to you?
   5   A. The programme surprised me, that a consultant would say
   6     that babies were dying unnecessarily. I had imagined
   7     when I left that hospital in 1987 that although I was
   8     not pleased with the lack of communication training,
   9     I had always believed I was in a unit of excellence.
  10        A consultant speaking out is an unusual occurrence
  11     in the medical profession, and therefore I could only
  12     think "Either there is a problem here or there is not
  13     a problem here, so why is he speaking out?" I wanted to
  14     go and listen to why he had taken that step to speak
  15     out.
  16   Q. At paragraph 19 of your statement -- this is page 28 --
  17     you say that after you had spoken to Dr Bolsin, you
  18     wrote to Mr McKinlay, together with your husband?
  19   A. Yes.
  20   Q. If we look, please, at MP 1/81, is that the letter that
  21     you were referring to there?
  22   A. Yes.
  23   Q. What was the point that you were trying to stress?
  24     Perhaps if we look at the last paragraph of that page,
  25     we might possibly see at least one point.

   1   A. There is a point in there about not giving parents false
   2     hopes. "There is a lack of training and communication
   3     skills", yes, but it is giving parents a false hope that
   4     more can be done than is necessarily the case. I think
   5     it is the academic perspective that doctors are trained
   6     to engage with, the disease, and illness, and not to see
   7     the whole person.
   8        What it appeared to me was happening was Dr Bolsin
   9     was joining up the dots and seeing that what was an
  10     academic problem resulted in children dying. That
  11     resulted in grief for parents. There is necessary
  12     grief, as we encountered, with Jacinta having
  13     a life-threatening problem. There is unnecessary grief
  14     which is an extra burden and needs to be limited for any
  15     parent who has a child with a life-threatening illness
  16     and there needs to be training done on that, because it
  17     is apparent that is through communication.
  18   Q. You set out in your statement that after having written
  19     this letter and becoming involved in this way, you saw
  20     Dr Joffe in his office.
  21   A. He responded to this letter by saying he would like to
  22     see me because all my facts were incorrect and he would
  23     like to put me straight on that. So I spent half an
  24     hour with him.
  25   Q. After that, Professor Angelini spoke to you?

   1   A. Yes, he responded to my letter and said it was very
   2     good, all the facts were correct, which really --
   3     "shocked" is the right word. Yes, it was almost saying
   4     "your facts are incorrect", "your facts are correct",
   5     there was a conflict. Yet again, there was a conflict
   6     between surgeons and cardiologists, and I asked
   7     Professor Angelini if I could speak to him.
   8   Q. Was that conflict influential in the work that you then
   9     did?
  10   A. Yes -- well, I decided I could only ask questions and
  11     Professor Angelini very clearly set out that there were
  12     serious issues; that the issues would be reduced to
  13     personalities and that he could not see how the story
  14     would come out because why should one person believe me
  15     and not the other person?
  16        This was about serious issues of what parents were
  17     being told about informed consent, of risks of
  18     operations, and not only that, but I was made aware of
  19     the 1989 report from the Cardiothoracic Society, the
  20     1992 report from the Royal College of Surgeons that had
  21     acknowledged that Bristol actually was not one of the
  22     best units in the country but actually perhaps one of
  23     the worst and it did not seem right to me that parents
  24     were being misinformed.
  25   Q. So all of these features and others indeed you have

   1     mentioned in your statement, led you to become central,
   2     perhaps, or heavily engaged in a campaign to ultimately
   3     a Public Inquiry?
   4   A. Yes.
   5   Q. One has started, it has been sitting for 78 days.
   6   A. Yes.
   7   Q. What are the things that you would like the Inquiry to
   8     take from the experience that you and your husband had
   9     with Jacinta?
  10   A. First of all, I would like to thank this Inquiry for
  11     having sat through so many days of oral evidence, and
  12     for being so rigorous in the way it is proceeding.
  13        There are many issues. At present, I have founded
  14     an organisation called "Constructive Dialogue of
  15     Clinical Accountability". "Constructive dialogue"
  16     because it challenges me to be constructive in my
  17     communication and I hope it flags up a respect for
  18     communication with doctors. There is no doubt that the
  19     medical profession, their morale has been severely
  20     dented by the Bristol cardiac disaster having come to
  21     the public arena, and I think there is a lot that needs
  22     to be done to restore public confidence in the medical
  23     profession that we have.
  24        I have to thank the Cardiothoracic Society for
  25     engaging in a very open and transparent dialogue with

   1     us, and we are looking with them at clinical audit as
   2     a tool of patient safety, and clinical excellence.
   3     Therefore, perhaps in the second phase, we would like to
   4     look at how competent doctors can be rewarded for their
   5     clinical excellence.
   6        I would like to make the point that you may have
   7     very dedicated doctors, but it does not mean that they
   8     are competent doctors.
   9        One of the things we were campaigning for is an
  10     independent medical inspectorate, which I believe has
  11     been set up. I do not know if it is an independent
  12     medical inspectorate or not, and I would like to have
  13     that clarified.
  14        What it highlights is that the lack of
  15     accountability in the Health Service has resulted in the
  16     avoidable tragedy. Yet again, the Cardiothoracic
  17     Society has said there is nothing in place yet to stop
  18     another Bristol from happening, and I know that when
  19     Mr Dobson announced this Public Inquiry, it was for
  20     grief resolution for parents primarily, and it was to
  21     put in structures that would stop another Bristol from
  22     happening.
  23        So I think some mode of accountability and
  24     regulation of doctors, other than self-regulation, is
  25     extremely important.

   1        The other very pressing need is for proper funded
   2     communication skills training. I think the consultants,
   3     personally, medical students -- it may take a whole
   4     generation to get through to consultants who are
   5     effective communicators in so far as they are giving
   6     impartial, genuine information to patients.
   7        I recently facilitated a workshop at the Child's
   8     Heart Foundation. If I may, I can give this to the
   9     Inquiry. The idea of this workshop was "What do you
  10     want to know?" These are parents whose children are
  11     undergoing heart surgery today.
  12        This is at consultation: "I need to know the
  13     truth, even if I do not want to hear it. I need to hear
  14     it with gentle honesty, not brutal reality. Parents
  15     have a responsibility to ask for the information they
  16     want. They have the right to expect the consultant to
  17     respect their need for genuine information, in
  18     recognition of the fact that parents are the people who
  19     know and care for their child, and ultimately have the
  20     responsibility of making very difficult decisions. So
  21     on informed consent, I would like to see a movement away
  22     from a paternalistic benevolent stance towards patients
  23     to one of patient autonomy --
  24   Q. If I could just stop you there for a moment. Two
  25     things. Firstly I think we would be very much assisted

   1     if you could send in to us the document summarising the
   2     outcome of the meeting that you facilitated, which you
   3     have just mentioned. We would be grateful for that,
   4     I am sure.
   5        The second thing was that you touched on training
   6     skills, communication training for doctors. I think you
   7     were suggesting it is not enough simply to attack it
   8     through medical schools; it needs a more thorough
   9     approach. Is that what you intended to say?
  10   A. I think medical students are all too willing to engage
  11     in effective communication skills training. I think
  12     when you get to the level of consultants who have a lot
  13     of power, who also have a lot of responsibility, they
  14     can be quite dismissive of patients, of parents, and
  15     therefore I think they need to engage with the parent
  16     perspective on a framework of emotional literacy,
  17     i.e. engaging to understand what parents need to know.
  18     But parents say they need to download the information,
  19     the expertise, expert information in consultants' heads
  20     to understand the process their children are going
  21     through. So I do think there needs to be a high level
  22     of communication skills training.
  23   Q. You have touched on accountability, on communication
  24     skills. I then interrupted you. What were you going on
  25     to say?

   1   A. I cannot remember, actually, but --
   2   Q. One of the themes that was coming through this morning
   3     was clearly the importance of informed consent.
   4   A. Yes.
   5   Q. Is there anything else that you would add to what we
   6     have heard this morning about that?
   7   A. Just what I have said: that I think there needs to be
   8     legislation introduced that makes parents, if you like,
   9     equal in status to the care of their children, and to
  10     acknowledge that they do have their own valuable input
  11     and they need to be heard and listened to, and they need
  12     to know that they are making decisions based on genuine
  13     information, so they need to be working with
  14     consultants, not having consultants make decisions for
  15     them.
  16   Q. I did interrupt your train of thought. Would you like
  17     to take a moment to think through what it is you were
  18     going to say?
  19   A. I was going to move on, actually, to say that there is
  20     one issue out of this Bristol debacle that I am not sure
  21     has been made clear, and I do seek clarification from
  22     the Inquiry on this point: that when we went to see
  23     Mr Dobson to negotiate the Inquiry, it was under the
  24     assumption that Mr Wisheart, as consultant cardiac
  25     surgeon, and Medical Director, had continued operating

   1     up until 1st May 1995, and that he was going to
   2     discontinue his cardiac surgery on children as soon as
   3     Mr Pawade took up his appointment, which also happened
   4     to be on 1st May 1995.
   5        I have been made aware very recently that
   6     Mr Wisheart continued operating on children after that
   7     date and I approached the BHCAG lawyers to ask for their
   8     confirmation of that. They said they would like to be
   9     able to confirm that but they could not because of the
  10     confidentiality clause they had undertaken, when
  11     Mr Wisheart's logbooks were handed over on a Discovery
  12     Order.
  13        So I presume, therefore, that the evidence is
  14     contained within those books and that the Inquiry can
  15     verify this.
  16        But if this is the case, that he did continue to
  17     operate, it was in spite of the Hunter/de Leval external
  18     review of February 1995, in spite of the letter from the
  19     Deputy Chief Executive, Mr Graham Nix, in March; in
  20     spite of the letter shown to me by Dr Joffe in April,
  21     all of this said that as soon as Mr Pawade took up his
  22     position, Mr Wisheart would cease operating.
  23        The point of this is to say that really the
  24     surgeon can run through major red lights without
  25     sufficient regard for patient safety, it would indicate

   1     that self-regulation on its own is a hopeless deterrent
   2     and cannot be trusted as a safe structure to limit
   3     patient harm.
   4        From the parents' point of view, I would like to
   5     know what they were told at that time, as to the current
   6     failure rate of a child being operated on in
   7     Mr Wisheart's hands. As far as clinical audit is
   8     concerned, there are implications. The Hunter/de Leval
   9     report covered audit up to 1995, and then the audit,
  10     paediatric cardiac review of Mr Pawade from 1995 to 1998
  11     showed only his figures, so where are these figures
  12     contained of Mr Wisheart?
  13        I would like some clarification on those issues
  14     I have raised.
  15        The CCDA would like to know how the recently
  16     established Commission for Health Improvement would deal
  17     with someone, a doctor who would proceed through
  18     external reviews and recommendations like that.
  19   Q. That is perhaps coming back to your theme of
  20     accountability, that last point?
  21   A. It is, yes. I also have something to say, if it is all
  22     right for me to say it, about Mr Dhasmana.
  23   Q. Could you just stop there a moment before moving on to
  24     that? I think I should just respond briefly to the
  25     point that has been raised about Mr Wisheart's continued

   1     operations. I think you put it really as a question for
   2     the Inquiry to investigate; is that right?
   3   A. I did, yes.
   4   Q. I should perhaps say that we are clearly aware of this
   5     issue; we have heard something about the circumstances
   6     of one operation just over the last few days, and that
   7     will continue to be investigated. Our provisional
   8     tentative findings are that we think that a further two
   9     operations were conducted by Mr Wisheart after 1st May,
  10     in addition to the cases we have looked at, but those
  11     are provisional findings that the Inquiry will need to
  12     look at further.
  13        It should be said now that, in response to your
  14     question as to whether or not the Inquiry is aware of
  15     it, the answer, I think, is yes, that is a matter for
  16     further investigation.
  17   MRS SHORTIS: Thank you.
  18   Q. You were about to talk about Mr Dhasmana?
  19   A. Yes. This is a personal view of my husband's and mine.
  20     It relates to the recent publicity about Mr Dhasmana's
  21     attempts to claim damages following his dismissal from
  22     the UBHT.
  23        As a family, we believe that Mr Dhasmana found
  24     himself in an extraordinary position following the
  25     ruling of the GMC. He was found guilty of serious

   1     professional misconduct and he was banned from operating
   2     on children for three years. I think we would like to
   3     have seen that as a lifetime ban, but however, we do not
   4     believe that he should face financial ruin and to put it
   5     in a meaningful context, he was there with two other
   6     doctors, both of whom were struck off but had retired,
   7     and had a pension to retire on. Added to that,
   8     Mr Wisheart had received nearly œ200,000 in his merit
   9     award. That merit award was conferred, reviewed and
  10     conferred upon again whilst he was the subject of the
  11     GMC investigation inquiry, and he will continue to
  12     receive that merit award until 2001.
  13        Whilst I do not condone what has happened to
  14     either of them, I do think there is an injustice that
  15     Mr Dhasmana is facing financial ruin and that
  16     Mr Wisheart has a merit award for his worldwide services
  17     to cardiac surgery, paediatric cardiac surgery. I just
  18     wanted to say to the Panel that I think this is
  19     a serious injustice, and I hope that in future this kind
  20     of balance is dealt with, is addressed.
  21   MISS GREY: Thank you. Are there any questions from the
  22     Panel?
  23   THE CHAIRMAN: Professor Jarman has a question.
  24            Examined by THE PANEL:
  25   PROFESSOR JARMAN: I wanted to pick up a general point. You

   1     said you would like to make the point that you may have
   2     very dedicated doctors, but it does not mean that they
   3     are competent doctors. Overall, do you feel that we
   4     have or have not got competent doctors in the country?
   5   A. I do not think we have any system that enables doctors
   6     to prove their competence and skills. Medical students
   7     certainly have to provide a level of competency in their
   8     examinations otherwise they would not become doctors.
   9     After that, I am not aware of doctors having to prove
  10     their competency on a regular basis.
  11   Q. I was really asking for your own genuine opinion.
  12   A. I believe we have a dedicated medical profession who
  13     work extremely hard. I do not know how competent they
  14     are.
  15   Q. You do not have an opinion with regard to how competent
  16     they are?
  17   A. I could not say how competent they are, because there is
  18     no system for me to read up on their competency.
  19   PROFESSOR JARMAN: Thank you.
  20   THE CHAIRMAN: I have no questions, but I look to Mr Lissack
  21     to see whether there is any re-examination.
  22   MR LISSACK: Just one question.
  23            RE-EXAMINED BY MR LISSACK:
  24   Q. Maria, just one matter which I know that you wanted to
  25     deal with, which is why I ask it, and I think it may

   1     assist the Inquiry. It is this: from 1995 to the
   2     present day, and no doubt continuing off into the
   3     future, you have played an active role on the wider
   4     stage than simply your own personal experiences at
   5     Bristol, as the Inquiry know.
   6        That has brought you into contact with consultants
   7     and experts in every discipline involved in paediatric
   8     cardiac surgery?
   9   A. Yes.
  10   Q. Ranging both from within and without the Bristol
  11     organisation, both as it was at the time material to the
  12     Inquiry and since.
  13        What I would like to ask you is this: some may
  14     perceive a gulf between an academic appreciation of
  15     something being wrong and a realisation that the
  16     something being wrong causes individual grief through
  17     the mortality or morbidity of children.
  18   A. Yes.
  19   Q. I just wondered whether, because I think I know the
  20     answer is yes, and I think I know what the answer will
  21     be, but I would like to have it in evidence, please:
  22     firstly, whether you share that perception?
  23   A. I do.
  24   Q. And if you do, what you have to say about it that may be
  25     of assistance to the Inquiry through your work and

   1     a parental perception with so many different
   2     professionals?
   3   A. I would say that parents need to be involved in feeding
   4     back to doctors and helping them to see how they engage
   5     with the reality of the suffering that can be inflicted
   6     upon them. I do not know whether I could say this
   7     afterwards to the Inquiry, but perhaps sitting here,
   8     having gone through what I have gone through this
   9     morning --
  10   MR LISSACK: I understand. Perhaps it may be better to
  11     leave the discussion from yesterday to be put in
  12     a further statement from you. Thank you very much
  13     indeed.
  14   THE CHAIRMAN: Thank you, Mr Lissack, I am grateful. Thank
  15     you also, Mrs Shortis. Miss Grey was exploring with you
  16     the themes that were emerging and your comments on them,
  17     and they have been extremely helpful. I think, if I may
  18     say one thing, you are asking us to be aware of the fact
  19     that there is so much that parents and patients can
  20     contribute, and I think we hear that.
  21        Secondly, I would seek to give you an assurance
  22     that all of the matters that you have mentioned, which
  23     are of interest to you, will be addressed in Phase II.
  24     You, for example, talked about incentives for clinical
  25     excellence, and you talked about communication skills.

   1     Amongst other things, these will be addressed, I give
   2     you that assurance.
   3        The one thing I cannot give you assurance on is
   4     that you asked for the Panel to put in structures. That
   5     is beyond our power, as we may only make
   6     recommendations, but we would seek to argue our
   7     recommendations sufficiently powerfully and forcefully
   8     that they are taken proper account of.
   9        Thank you for coming. It was I think Sam and
  10     Patrick who for a while were here, and I think it is
  11     helpful for them to see their Mum giving evidence.
  12     Thank you very much.
  13             (The witness withdrew)
  14   MISS GREY: Sir, our next witness this morning is
  15     Dr Jordan. Could I suggest we break until perhaps 5 to
  16     12 while people here upstairs go downstairs, and so on
  17     and so forth?
  18   THE CHAIRMAN: Yes, a short break of five minutes, thank
  19     you.
  20   (11.45 am)
  21               (A short break)
  22   (11.55 am)
  23   MR LANGSTAFF: Sir, this afternoon, or very nearly this
  24     afternoon, we have the evidence of Dr Stephen Jordan.
  25     We are assisted, as we were yesterday, by Mr Deverall

   1     and Dr Silove. Because they have been sworn yesterday,
   2     I think it is unnecessary that they should be required
   3     to swear again today. They know the oath they swore
   4     yesterday covers what they may say today.
   5        Dr Jordan, would you like to come forward,
   6     please? Dr Jordan, would you please stand to take the
   7     oath?
   8            DR STEPHEN JORDAN (SWORN):
   9            Examined by MR LANGSTAFF:
  10   Q. Dr Jordan, your full names?
  11   A. Stephen Christopher Jordan.
  12   Q. You were, for quite a number of years, the senior
  13     cardiologist dealing with paediatric cases at the
  14     Bristol Children's Hospital, were you not?
  15   A. That is correct.
  16   Q. I want to deal with the period between 1984, which is
  17     some time, I think, after you were first appointed to
  18     Bristol, and 8th May 1993, which is when you retired.
  19        Between that period, did you have particular
  20     interests in cardiology, which you sought to pursue?
  21   A. I should perhaps explain that my appointment was as
  22     a cardiologist with both adult and paediatric duties,
  23     and I continued that until 1990, when I gave up routine
  24     adult cardiology and another cardiologist was
  25     appointed.

   1        The particular things that I had an interest in
   2     generally in terms of the whole period of my appointment
   3     were, of course, paediatric cardiology and also more
   4     related to the adult work, cardiac pacing and
   5     electrophysiology.
   6   Q. I think you went so far as to publish a well-known book
   7     on paediatric cardiology?
   8   A. I am the joint author of a book which I should say is
   9     designed not to instruct paediatric cardiologists but to
  10     instruct paediatricians, with Dr Olive Scott, who was
  11     a paediatric cardiologist in Leeds, and there were three
  12     editions of the book, the last of which actually came
  13     out in 1989.
  14   Q. You will, in the course of your evidence, I think, tell
  15     us how you were instrumental in beginning and developing
  16     the South West Congenital Heart Register?
  17   A. Yes. It is correct that that was something that I --
  18     I did not actually start it. I converted it from
  19     something that was written in a ledger to something that
  20     was capable of being manipulated electronically.
  21   Q. I think there is something like a tinge of
  22     disappointment in your statement, as I read it, that the
  23     full advantage may not have been taken of modern
  24     computer systems to maintain that work?
  25   A. Yes. I mean, it would have been nice to have more

   1     support in terms of computer expertise, but particularly
   2     perhaps more support just at a general level of
   3     inputting and checking the data that went into it. We
   4     actually lost at one stage quite a lot of the earlier
   5     data -- I do not think it is anything that is going to
   6     affect this Inquiry, but we lost it and we never really
   7     had time to input it again into the more modern system,
   8     which is still in existence at the moment.
   9   Q. You were a member at one stage of the Royal College of
  10     Physicians Joint Committee on Higher Medical Training?
  11   A. Yes, that is correct.
  12   Q. For how long was that?
  13   A. I think the period was about three years, but I am
  14     afraid my recollection is somewhat hazy.
  15   Q. In the course of that, you would have visited other
  16     units?
  17   A. Yes. I am trying to remember whether I was actually
  18     a member of the committee, or simply one of their
  19     designated visitors. There may be a slight
  20     distinction. I was certainly associated with it from
  21     the point of view of visiting centres to agree whether
  22     Senior Registrar posts were or remained suitable for
  23     training.
  24   Q. Roughly when would that be?
  25   A. It was really I think the earlier part of the 1980s, as

   1     far as I can recall -- early to middle 1980s.
   2   Q. The way that we are going to ask you the questions on
   3     behalf of the Inquiry is to split your evidence into two
   4     parts. First of all, I will ask you to identify your
   5     statements and accept them as true and accurate. They
   6     will, of course, already have been read by the Panel and
   7     they can be read by anyone in the wider audience who
   8     wishes to see what you say in statement form.
   9        Then questions which arise from what one might
  10     call the "administrative" aspects to which you depose in
  11     those statements, will be asked by Mr Maclean and that
  12     will take place rather later today. I want to ask
  13     a number of questions about three or four of the cases
  14     which arise from the Clinical Case Note Review exercise
  15     which the Inquiry carried out, with a view to getting
  16     the benefit, while our two experts are still here, of
  17     your expertise, in helping to look at some of the themes
  18     which that review has thrown up, and to see whether
  19     cases are, in truth, examples of those themes or not, or
  20     what insight we may get into events in Bristol through
  21     one or two of the cases. That is the purpose of it.
  22        So the purpose of looking at those cases is not to
  23     attribute blame or compensation, or go through what one
  24     might describe as the traditional medico-legal analysis.
  25   A. I understand that.

   1   Q. Before I ask you questions about those, can I identify
   2     the several statements which you have given us, and we
   3     begin at WIT 99/1. That is the first statement you give
   4     us, essentially about the register. That goes through,
   5     does it, to page 7. That is your signature at 7th June
   6     of this year?
   7   A. Yes, that is correct.
   8   Q. Then the next statement begins at page 8 and goes
   9     through, does it, to page 28. That is in respect to
  10     what the Inquiry knows as Issue B. We see you signed
  11     that again, that is your signature, on 22nd September of
  12     this year?
  13   A. That is again correct.
  14   Q. The third statement, from pages 29 to 32, again signed
  15     on 21st September and that deals with the issues arising
  16     in respect of the split site, does it?
  17   A. That is correct.
  18   Q. Pages 33 to 34: a fourth statement, this time dated
  19     4th November of this year, which is supplementary to the
  20     statement you had earlier put in about Issue B?
  21   A. Yes. That is correct.
  22   Q. Then pages 35 to 38. Page 35 is referrals. Page 38,
  23     you sign that on 9th November. Then pages 39 to 44:
  24     signed on 9th November --
  25   A. Yes.

   1   Q. -- about pre-operative care. Pages 45 to 46: the same
   2     date, about post-operative care?
   3   A. Yes.
   4   Q. And pages 47 to 51: 10th November, last week, in respect
   5     of what you knew about the expression of concerns.
   6   A. Yes, that is correct.
   7   Q. That, I think, completes thus far your written
   8     evidence -- I say "thus far" because undoubtedly like
   9     other witnesses you will be invited to add anything you
  10     want to after having given evidence to us orally, and
  11     you are free to do so, and indeed, we invite you to do
  12     so if you feel so moved.
  13   A. I understand that.
  14   Q. Are the contents of those statements true and accurate?
  15   A. To the best of my recollection, yes.
  16   Q. As I have indicated, what I want to do is to take the
  17     benefit, this morning and early this afternoon, of your
  18     expertise and in the time that you have been in Bristol,
  19     the respect which you have gained, to help us with
  20     looking at the lessons that we might learn from some of
  21     the cases which come out of the Case Note Review.
  22        The first case -- you have had a chance, I think,
  23     to see the medical records in respect of the case of
  24     Marc Stevens, have you?
  25   A. Yes. May I just get out of my bag the forms and also

   1     some notes that I made when I went through them?
   2   MR LANGSTAFF: Please do. While you are doing that, if
   3     I may say, sir, of course, as is the case with any
   4     matter arising from the Case Note Review which is
   5     referred to in open session, we have full consent to
   6     refer to this case and the case notes.
   7   THE CHAIRMAN: Thank you, Mr Langstaff. We remind ourselves
   8     of that always.
   9   DR JORDAN: Can I please ask what is the reference number to
  10     this?
  11   MR LANGSTAFF: It is 2277 and 2278.
  12   DR JORDAN: I have numbers that go from 0 to 70. The reason
  13     I ask is that I actually deleted the names and dates of
  14     birth.
  15   MR LANGSTAFF: It is 70.
  16   THE CHAIRMAN: Dr Jordan, do make sure you are content and
  17     have everything you wish. I do not want you to feel
  18     rushed and not have the right papers. Take whatever
  19     time you need.
  20   DR JORDAN: Thank you, Mr Chairman. I think I am all
  21     right.
  22   MR LANGSTAFF: What we can do very easily is if we identify
  23     a page from the medical records which you want to refer
  24     to which I have not mentioned, then we can have it
  25     called up on the screen so that all can see it. If that

   1     means taking time, we will take time, but the important
   2     thing is to get the exercise right.
   3        Marc Stevens was a boy born on 3rd October 1985,
   4     was he not?
   5   A. I am afraid I have also --
   6   Q. Let me give you that date.
   7   A. I am quite happy that is the case. It fits in with
   8     everything else I have. I removed the date of birth as
   9     well, just in case.
  10   Q. He suffered from the condition known as double outlet
  11     right ventricle and it appeared at postmortem that he
  12     had a complete AVSD?
  13   A. I do not really want to get into the semantics of this.
  14     There are some people who would refer to the defect in
  15     other terms. I do not know whether you want me to go
  16     into that now, or whether we should come to it at a time
  17     when it is perhaps more related to something else you
  18     are going to ask me.
  19   Q. Shall we see how we go, and pick up the question of
  20     terminology, because I think terminology may be a matter
  21     of some importance in looking at certainly some of the
  22     earlier records in this case.
  23        If I can just tell you what I think the early
  24     history is about which no question arises, and then take
  25     you to the parts which I particularly want to ask you

   1     about.
   2        What I think the notes show us is that in early
   3     1986 he was transferred to the Children's Hospital
   4     because of the cyanotic episode. There was an ECG,
   5     which was within normal limits, and at the Bristol Royal
   6     Hospital for Sick Children, he was found to have mild
   7     central cyanosis and a loud systolic murmur. He was
   8     seen by you, and an echocardiogram performed which was
   9     not easy, and you recommended that he should have
  10     a catheter. No question arises thus far?
  11   A. That is correct.
  12   Q. The cardiac catheterisation took place in January 1986,
  13     and what I want to ask you about first is page 114,
  14     which is where we -- perhaps we will go to 113, Medical
  15     Report 2277/113, which is the report of the
  16     catheterisation, is it not?
  17   A. Before we go off that, could I just draw the Inquiry's
  18     attention to what it says at the top, and that is that
  19     this was a catheter carried out at Bristol Royal
  20     Infirmary? This was before we had the unit at the
  21     Children's Hospital.
  22   Q. You make a point in your statement, I think, that
  23     catheterisation facilities were much improved after
  24     1987/88, and this catheter was performed plainly in
  25     1986, before that improvement took place?

   1   A. That is correct.
   2   Q. If we look at page 114 and go to the foot of it, can
   3     I just ask to have highlighted what is shown under "LV",
   4     the paragraph at the bottom there?
   5        What is reported by, I think it is Mr Wilde, we
   6     see that at page 115 but I will come to that in
   7     a moment; Mr Wilde was a radiologist of some experience,
   8     was he?
   9   A. Peter Wilde, yes.
  10   Q. We heard yesterday from Dr Martin how he would place
  11     considerable reliance on any view Dr Wilde came to?
  12   A. Yes.
  13   Q. What he reports having seen is:
  14        "The left ventricle is well outlined and shows
  15     good contractility. The ventricle has a left
  16     morphology. The mitral valve functions normally. There
  17     is a large basal VSD with dense opacification of the
  18     right ventricle occurring also."
  19        He goes on to describe, at the bottom of the page,
  20     pulmonary artery is seen. Highlight the first paragraph
  21     at the top of the page.
  22         "The coronary arteries are abnormal with the
  23     right coronary artery arising from the left and passing
  24     around the aortic root (presumably posterially)."
  25        Going back to 114 at the foot, there may be some

   1     difficulty, perhaps, with nomenclature, but what would
   2     you understand by the expression "large basal VSD"?
   3   A. It is a defect in the part of the intraventricular
   4     septum which is closer to the origins of the mitral
   5     tricuspid valve than to the base of the aorta or the
   6     pulmonary artery.
   7   Q. So a surgeon, if he was presented with that expression
   8     "large basal VSD" at this time, in 1986, would begin to
   9     have alarm bells ringing, would he, as to what he might
  10     find when he opened up the heart?
  11   A. There is always worry about double outlet right
  12     ventricle with regard to the position of the ventricular
  13     septal defect and whether it is close enough to one or
  14     other of the aorta and the origins of the aorta and the
  15     pulmonary artery, to enable one or other of the types of
  16     corrective operation that might be applied in this
  17     condition.
  18        I am sorry if it is rather long-winded, but this
  19     one of the things that one has to determine with
  20     a patient with a double outlet right ventricle.
  21   Q. When one looks at page 115 and comes to "Conclusion"s at
  22     the foot of the page, the conclusion which Dr Walker
  23     draws from the work done by Dr Wilde is what is shown is
  24     a double outlet right ventricle with subaortic VSD.
  25        That is not quite what Dr Wilde has described, is

   1     it?
   2   A. Dr Walker would undoubtedly have looked at the
   3     angiograms and almost certainly would have looked at
   4     them with me as well, because Dr Walker was a Senior
   5     Registrar. But, yes, the answer is, he is saying
   6     something that is different, or potentially different,
   7     from what Dr Wilde is saying.
   8   Q. Can I bring you in on this and invite you to comment and
   9     interrupt at any stage, if you wish?
  10   DR SILOVE: Thank you very much. I agree with everything
  11     that Dr Jordan has said so far. It is a very difficult
  12     problem, this double outlet right ventricle, and I also
  13     would have understood a basal VSD to be somewhere near
  14     the atrioventricular valves, rather than being
  15     subaortic. So there is a discrepancy here, I think,
  16     between what Dr Wilde has said and what Dr Walker is
  17     interpreting, perhaps.
  18        There is just one other point that I wanted to
  19     raise with Dr Jordan, if I may. I have obviously looked
  20     at these medical records, and it was interesting that in
  21     the echocardiogram that was done by Dr Jordan which is
  22     on page 36 --
  23   MR LANGSTAFF: Just pause for a moment and let us get it up
  24     on the screen so we can all look at the same thing.
  25   DR SILOVE: I am looking for your note on -- it is

   1     difficult.
   2   DR JORDAN: Would you like me to try and read it, because
   3     I am probably better able to read my own writing?
   4   DR SILOVE: I have it, at the bottom of the page -- you read
   5     it for us, please.
   6   DR JORDAN: It says "Not easy, heart central and crying plus
   7     plus, query corrected transposition", which we will not
   8     go into, but --
   9   DR SILOVE: That was the point I was picking up on, because
  10     I am anticipating that by your writing "query corrected
  11     transposition" you might be raising the question about
  12     something unusual about the atrioventricular valves. It
  13     was a long time ago and I am sure you do not remember
  14     doing the actual echo, but it made me -- because in
  15     congenitally corrected transposition, the classical
  16     picture, I am sure you will agree, is that the left side
  17     of the AV valve is at a lower level than the right AV
  18     valve, whereas in the normal heart, it is the other way
  19     round.
  20        So I just wonder whether you probably suspected
  21     some possible abnormality around the atrioventricular
  22     valve area?
  23   DR JORDAN: I do not think I can say at this stage what
  24     I was thinking when I wrote that, I am sorry.
  25   DR SILOVE: It occurred to me afterwards that that might

   1     have been another possible alarm bell.
   2   MR LANGSTAFF: Could I just ask you to stop for a moment,
   3     and ask that we have a break, as it were, between each
   4     person talking for the benefit of the stenographer?
   5     I will try and moderate as much as I can the discussion
   6     which takes place, but it is partly my job and partly
   7     the Chairman's task, I know, to make sure that our
   8     stenographers get down the words, because it is a matter
   9     of importance.
  10        The point you are making is that it is a long time
  11     ago and you therefore can only go presumably by the
  12     records, or anything you do actually recall about the
  13     case, and it may not be much?
  14   DR JORDAN: That is correct.
  15   MR LANGSTAFF: Mr Deverall, if it had been reported to you
  16     that there was a large basal VSD when you were coming to
  17     an operation as a surgeon, how would you have reacted at
  18     this time?
  19   MR DEVERALL: I think I would have a sinking feeling in the
  20     pit of my stomach.
  21   MR LANGSTAFF: Because?
  22   MR DEVERALL: Because in the earlier years when exploratory
  23     cardiotomy was part of the complex approach to complex
  24     heart disease, you only had to experience once opening
  25     the heart and finding this and knowing you could do

   1     nothing, to then bend over backwards to avoid ever being
   2     in that situation again, and where it is quite clear
   3     that this child has the so-called double outlet right
   4     ventricle, by definition a condition, as Dr Anderson
   5     will have told you previously, where more than one and
   6     a half great arteries come from a single ventricle, the
   7     next thing a surgeon says is "Where is the VSD?", as
   8     Stephen Jordan has said.
   9        If there is the slightest suspicion that that
  10     ventricular septal defect is remote from the aortic or
  11     pulmonary valve, one's antennae would immediately say
  12      "Is this a large central -- ", we can get into the
  13     semantics of the types of VSD in the centre of the heart
  14     later, but one would be extremely concerned that this
  15     would be a major factor in dictating whether one could
  16     or could not correct the lesion.
  17   MR LANGSTAFF: If the matter was reported to the surgeon in
  18     the terms that Dr Walker had put it at page 115, as
  19     a double outlet right ventricle with subaortic VSD --
  20   MR DEVERALL: That is the most frequent type that we
  21     encounter and it is a relatively straightforward
  22     corrective operation.
  23   MR LANGSTAFF: So the distinction is actually of some
  24     importance to the surgeon.
  25   MR DEVERALL: Chalk and cheese.

   1   MR LANGSTAFF: There was a second catheter, I think,
   2     performed -- let us have a look at page 101. This is
   3     a catheterisation in February 1989, so it is some time
   4     after the original catheter that we have looked at. We
   5     see here a report by -- it is Dr Martin's report,
   6     page 3. Perhaps we ought to pick it up and go back to
   7     the beginning of it. It begins at 98. The top
   8     left-hand corner, we can see, page 1. It is referred to
   9     the hospital as your patient, but as we will see it is
  10     Dr Martin who actually does the report.
  11        Page 101 is page 4 of the report. Again, it is
  12     Dr Wilde doing the radiography. In the middle of the
  13     page, not easy to read but I will do my best from the
  14     typescript, beside the punch hole there:
  15        "Left ventricle: the left ventricle is well
  16     outlined and shows good contractility. There is
  17     a moderate size basal VSD which lies close to the mitral
  18     valve and fills the right ventricle immediately beneath
  19     the aortic valve. No additional VSD is seen. It is
  20     noteworthy that on this and previous injection, the
  21     coronary anatomy seems to be normal."
  22        Again, that is describing in slightly different
  23     words the same thing Dr Wilde had seen earlier: the
  24     basal VSD.
  25   DR JORDAN: Yes, I think so.

   1   MR LANGSTAFF: And what might give a surgeon cause for alarm
   2     might be the proximity to the mitral valve?
   3   DR JORDAN: Yes.
   4   MR LANGSTAFF: If we go back a page to page 100, and we look
   5     down at what is said about the left ventricle angiogram,
   6     just below the punch hole, is that a consistent
   7     description, calling it a "large malalignment VSD with
   8     subaortic conus"?
   9   DR JORDAN: I think my feeling would be that those two
  10     descriptions are not exactly identical, but bear in
  11     mind, of course, that what is going to take place is
  12     going to be viewed in detail, with the possibility of
  13     operation under consideration.
  14   MR LANGSTAFF: What we have been able to trace following
  15     from this is a discharge letter at page 93. This is
  16     signed by you because it was your patient, and we see
  17     the history:
  18        "Young man admitted for further cardiac
  19     catheterisation... originally admitted at the age of
  20     3 months on account of cyanotic episodes ... found to
  21     have a murmur."
  22        At that stage, catheterisation confirmed the basic
  23     diagnosis. He had a right BT shunt on 25th May 1986.
  24     Since then he had been generally stable and on
  25     examination was generally well.

   1        Then the echocardiogram. Let us highlight that,
   2     because it is difficult to see, just below the punch
   3     hole. I will read it and read it slowly, because it is
   4     not easy to see:
   5        "An echocardiogram demonstrated the basic
   6     anatomy - double outlet right ventricle and side by side
   7     great arteries. The pulmonary artery being slightly
   8     anterior. There was a large VSD mainly committed to the
   9     aorta, and a subaortic infundibulum with valvar and
  10     subvalvar stenosis. Cardiac catheterisation confirmed
  11     these findings".
  12        What you are reporting there, I think, was
  13     consistent with what Dr Martin had put in his report,
  14     was it not?
  15   DR JORDAN: Yes. The relationship of VSD to the aorta,
  16     I mean, it has to be said that large ventricular septal
  17     defects can both relate to the aorta and relate to the
  18     mitral valve. The two in fact, in hearts w