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Daily transcripts
Hearing summary
16th December 1999
Today Phase One oral hearings concluded in Bristol with evidence from
parents. The Inquiry heard first from Mrs Sharon Peacock who described her experience of
the paediatric cardiac service provided in Bristol following the birth of her son Andrew
in November 1993 until his death, following surgery to correct coarctation of the aorta by
Mr James Wisheart, in May 1995.
The Inquiry then heard from a large group of parents who recounted the range of their
experiences of their children’s treatment and care at the Bristol Royal Infirmary
(BRI) and Bristol Children’s Hospital (BCH). They told the Inquiry about how they
were given information about their child’s diagnosis and pre-operative care,
focussing particularly on the importance of open and honest communications between
clinicians, patients and families. They spoke about the counselling and support made
available to them within the hospitals and continued by commenting on post-operative care
in the intensive care unit. The groups of parents concluded their evidence by speaking
about consent for post mortems and the subject of tissue retention.
The following parents attended the Inquiry today: Justine Eastwood, Sheila Forsythe,
Karen Welby, Richard Lumniss, Michelle Cummings, Marie Edwards, Anne Waite, Phillippa
Shipley, John Malone and Lorraine Pentecost.
The oral hearings then adjourned until the presentation of final Phase One submissions
on 9/10 February 2000.
The first Phase Two Seminar will be held in Bristol on 12 January 2000. The title of
the Seminar is: ‘Acute Healthcare Services for Children’ and it will be held at
2 –10 Temple Way, Bristol.
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FULL TRANSCRIPT
1 Day 95, Thursday, 16th December 1999
2 (9.40 am)
3 THE CHAIRMAN: Good morning, everyone. Good morning,
4 Mr Langstaff.
5 MR LANGSTAFF RE VENUES
6 FOR FURTHER HEARINGS:
7 MR LANGSTAFF: Good morning, sir. Before Mr Maclean calls
8 Mrs Sharon Peacock who will be the first of the twelve
9 parents we will be privileged to hear today, can I say
10 a word about what happens to the Inquiry after today?
11 The Inquiry, of course continues in the work which is
12 very real, dedicated but unseen.
13 The visible part of the Inquiry will consist of
14 a number of seminars. When I, in my hotel room last
15 night, was listening to the media there was a report
16 that the Inquiry was moving to London. It is not
17 actually the case. We are Bristol-based inevitably and
18 rightly. The first of the seminars, on acute health
19 care services for children will be held here on
20 Wednesday, 12th January.
21 The next few seminars it is true will be in London
22 and they will be the determinants of performance, the
23 factors which determine the level of the performance of
24 organisations including the public sector generally and
25 health care in particular which will be on Wednesday
0001
1 26th January at the National Liberal Club, Whitehall
2 Place in London.
3 Then culture, professional and managerial cultures
4 and their impact on the quality of service, that is
5 Wednesday 16th February 2000. May I mention in the
6 interim, between those two dates, we will be returning
7 here of course to hear the final submissions on the
8 witness evidence which has been received, final oral
9 submissions, they will be made largely in writing but
10 supplemented orally by representatives of the
11 participants in the Inquiry on 9th and 10th February
12 here.
13 Then returning to the seminars, I have mentioned
14 that on Wednesday 16th February at the Institution of
15 Civil Engineers at 1 Great George Street in London and
16 the next which is announced today: leadership, vision
17 change and learning from experience on Wednesday,
18 23rd February at the National Liberal Club, Whitehall
19 Place in London.
20 These seminars are of course fully open to the
21 public and media representatives who wish to follow the
22 proceedings. Members of the public who would like to
23 attend are asked to write to the officers here or e-mail
24 us Inquiry at doh.gov.uk quoting Phase 2 if they wish to
25 reserve places.
0002
1 The seminars in March next year: the titles, the
2 dates and the venues will be announced in due course.
3 That is all I have to say at this stage of today.
4 THE CHAIRMAN: Mr Langstaff, before you sit down I thank you
5 for that. I did not have, as you have had clearly, the
6 luxury of being able to watch the television last
7 evening, but I do more seriously reinforce what you
8 said, that we are here and we will be here and the
9 office remains here and many of our activities will be
10 here in Bristol for some time to come and that is
11 important for everyone to know.
12 MR MACLEAN: Sir, this morning's first witness is
13 Mrs Sharon Peacock.
14 MRS SHARON PEACOCK (SWORN):
15 Examined by MR MACLEAN:
16 Q. Your full name is Sharon Peacock, you are married to
17 Daryl. Your son Andrew was born on 29th November 1993
18 at the St Michael's Hospital in Bristol?
19 A. Yes.
20 Q. He was your third child, was he not, your third son
21 following Anthony and Ashley?
22 A. Yes, that is right.
23 Q. Can I ask you to have a look at the screen to your
24 right. Could we have a look at WIT 11/1. That is the
25 index, is it not, to the statement that you made to the
0003
1 Inquiry?
2 A. Yes.
3 Q. If you go to page 31; that is the last page of your
4 statement and that is your signature?
5 A. Yes, that is right.
6 Q. I think if we go to page 22, I think in reading the
7 statement through you have spotted a very minor error at
8 the foot of this page, have you not?
9 A. Yes, just a couple of dates wrong. I have the fourth
10 month instead of the fifth month.
11 Q. The last line, Thursday 4th April should be 4th May?
12 A. Yes.
13 Q. If we go over the page, please, to 23: "On 4th April
14 Ash Pawade performed his first operation", that should
15 be 4th May as well, should it?
16 A. Yes, that is right.
17 Q. If we read those two Aprils as Mays, is there anything
18 else in the statement that you want to change having
19 read it through again?
20 A. No, I am quite happy with it.
21 Q. You have also more recently submitted three further
22 pages, page 35, 36 and 37, which really summarise the
23 points you are particularly anxious to make about
24 Andrew's case; is that right?
25 A. It is sort of the main points I have picked out of my
0004
1 statement yes.
2 Q. We will come back to those in a moment. Before we do,
3 page 38, this is a letter, is it not, to you from
4 Mr Ross dated earlier this month, 1st December 1999
5 about the retention of Andrew's brain?
6 A. Yes.
7 Q. Again, Sharon, we will come back to that a little later.
8 A. I thought we were not going to discuss that. That is
9 okay.
10 Q. Let us go back to the beginning of Andrew's story. He
11 was born on 29th November and he was discharged from
12 hospital on 3rd December, was he not, 1993?
13 A. Yes.
14 Q. At that stage you had no inkling that he was suffering
15 from any cardiac problem at all?
16 A. No, no, he seemed really well in himself. I was a bit
17 concerned about his feeding, he was not feeding as
18 hungry as my first two babies did, but the hospital
19 staff were really happy with him.
20 Q. It was not, however, very many days before he was
21 readmitted to hospital, was it?
22 A. No.
23 Q. I think he was admitted, was he not, to the Accident and
24 Emergency Department at the Children's Hospital on
25 8th December 1993?
0005
1 A. Yes.
2 Q. When he would have been, what, nine days old?
3 A. Yes.
4 Q. At that stage it was thought Andrew might be suffering
5 from meningitis?
6 A. Yes, yes, he was really shut down and really severely
7 ill.
8 Q. Can we have a look at MR 572/20. Can we take out the
9 address? Can you go to page 20. This is the Accident
10 and Emergency Department note recording Andrew being
11 admitted. We see on the right-hand page, time of
12 arrival: 10.45, 8/12/93; do you see that?
13 A. Yes.
14 Q. If you go to page 21, towards the foot of the page
15 I think just above the middle of the screen now, do you
16 see the word "meningitis"?
17 A. Yes.
18 Q. That was the provisional diagnosis at that stage of
19 meningitis, septicaemia?
20 A. Yes.
21 Q. If we go to the very bottom of page 21, we see in the
22 bottom right-hand corner, "[question mark] cardiac"; do
23 you see?
24 A. Yes.
25 Q. When were you first aware there was potentially, as far
0006
1 as the doctors at the Children's Hospital were
2 concerned, a problem with Andrew's heart?
3 A. Not until we were taken up to him to see him on ITU, on
4 the Intensive Care, on the way up they told us it was
5 a heart condition.
6 Q. On this day?
7 A. On this day, yes, about an hour and a half after he was
8 admitted.
9 Q. I think an echo was performed, was it not, at the
10 Children's Hospital shortly after Andrew was admitted?
11 A. We did not know that, I thought at that time a lumbar
12 puncture was being carried out.
13 Q. Go to page 24, please.
14 THE CHAIRMAN: We are just taking the address out of that.
15 MR MACLEAN: In the middle of the page by the black dot, do
16 you see "echo shows coarctation". It transpired, did it
17 not, that Andrew was suffering from coarctation of the
18 aorta?
19 A. Yes.
20 Q. If we go over one more page, please, to 25, at the top
21 of the page, the second line, do you see the word
22 "parents", then there is a symbol that means
23 "diagnosis", "explained" and "some concern expressed
24 about possibility of brain having been affected"?
25 A. Yes. They explained to me that Andrew was so shut down
0007
1 that the blood was only supplying his heart and lungs
2 and I asked about if there was lack of blood to the
3 brain at the time and they said they did not really know
4 until they had seen how he recovered after surgery, if
5 they got him well enough to have his surgery.
6 Q. The concern about potential brain damage was one that
7 was in your mind?
8 A. It was in my mind straightaway, yes.
9 Q. From the very beginning?
10 A. Yes.
11 Q. At this time when Andrew was admitted to the Children's
12 Hospital, the doctors were not very confident about his
13 immediate prospects, were they?
14 A. No, he was really severely ill, he was passing blood,
15 they really did not think he would make the night that
16 first night.
17 Q. I think you say in your statement at WIT 11/5, paragraph
18 11, you had met Mr Wisheart by this time in the
19 Intensive Care Unit?
20 A. Yes.
21 Q. Mr Wisheart was hoping that Andrew would stabilise over
22 the next day, but an operation was going to be
23 necessary?
24 A. Yes.
25 Q. And he said that Andrew's chances of survival were five
0008
1 in twenty?
2 A. Yes. Usually because of how young and how ill Andrew
3 was, that made it a higher risk up to, usually it would
4 be like ten out of twenty at this age and size. Have I
5 got that right? No, normally -- I think that is wrong,
6 I think it should be normally one in twenty babies would
7 survive it, normally one in every twenty babies -- no,
8 sorry.
9 Q. Andrew was more ill than would be normal, if that is the
10 right word?
11 A. If he had gone into the operation well, he would have
12 had a stronger chance, his chances were only five out of
13 twenty.
14 Q. Did you understand that meant the other fifteen --
15 A. Would survive.
16 Q. -- out of twenty would not survive the operation?
17 A. Yes, five would survive.
18 Q. So he was very ill?
19 A. Yes.
20 Q. And you understood --
21 A. Yes, I fully understood how ill Andrew was.
22 Q. And you understood at that time the doctors thought
23 there was a very significant risk that he might die that
24 night?
25 A. Yes, they said there was a little duct they had to force
0009
1 open before they could do the surgery and, before they
2 could stabilise him they had to get this duct open and
3 that would take -- to see how he would survive through
4 the night and if he survived the night, each time they
5 had been trying to get him stable enough to do the
6 operation.
7 Q. Happily Andrew did stabilise, did he not?
8 A. Yes.
9 Q. And an operation was carried out the following day,
10 9th December 1993 at the Children's Hospital by
11 Mr Wisheart?
12 A. Yes.
13 Q. You have seen at some stage the note Mr Wisheart made of
14 that operation?
15 A. No.
16 Q. I can show you that in due course. That operation went
17 well, did it not?
18 A. Yes, everyone was really pleased -- when he first came
19 up from the surgery everyone seemed pleased but he still
20 looked really, really severely ill, he was still on lots
21 of machinery, I do not know what I was expecting really
22 but each day the ventilator was turned down a bit and
23 the sedation was turned down a bit and you could see
24 Andrew getting better as each day went on.
25 Q. The doctors were pleased with him?
0010
1 A. They were really pleased with him, yes.
2 Q. Can we go to MR 572/36. Again there is not a very clear
3 address at the top. Do you see about four lines down
4 "Coarctation repair looks good", it is the third
5 paragraph, do you see?
6 A. Yes.
7 Q. The date of that is 10th December, that is the day after
8 the operation.
9 A. Yes.
10 Q. If we go to page 49, this is 15th December, six days
11 after the operation, we see four lines from the bottom
12 there "Seems to be returning to --", I think that word
13 is "normal"?
14 A. "Normal".
15 Q. You mention in your statement at paragraph 16 that at
16 this time Dr Martin was optimistic?
17 A. Yes.
18 Q. It would appear these notes bear out his optimism; it
19 looks as if there was genuine optimism at this stage for
20 Andrew's prospects?
21 A. Yes.
22 Q. And he went home for Christmas?
23 A. Yes, everyone was very pleased with how quickly he
24 seemed to recover.
25 Q. Unfortunately I think on New Year's Eve he took a turn
0011
1 for the worse again?
2 A. Yes.
3 Q. Is that right?
4 A. Yes.
5 Q. And he was readmitted to the Children's Hospital?
6 A. That is right.
7 Q. If we go to page 58 in Andrew's notes, we have now moved
8 to 2nd January 1994; if we go down the page a little,
9 the finding at this stage was that there was evidence of
10 recoarctation of the aorta, and at the bottom of the
11 page, please, "Will need further investigation"?
12 A. Yes.
13 Q. Again Andrew was under the care of Dr Martin?
14 A. Yes.
15 Q. I think on 5th January 1994, if we go to page 61,
16 a balloon had been passed into Andrew's aorta, had it
17 not?
18 A. Correct, through a cardiac catheter.
19 Q. We see from the notes here in the middle of the page by
20 the second black dot "Reasonable results from balloon
21 dilatation"; do you see?
22 A. Yes, I think he had thought he had stretched the narrow
23 area enough with the balloon.
24 Q. In the spring of 1994, Andrew again came under
25 Mr Wisheart's care for a further operation; is that
0012
1 right?
2 A. Yes.
3 Q. This was the second operation Mr Wisheart had performed
4 on Andrew?
5 A. Yes.
6 Q. Like the first, this one was at the Children's Hospital?
7 A. Children's, yes.
8 Q. You say in your statement that Mr Wisheart had explained
9 that this operation carried a 94 per cent success rate?
10 A. Yes, he did mention a risk to Andrew's legs though
11 because when he clamped off the aorta the blood flow was
12 restricted to the legs.
13 Q. So he specifically mentioned that as a potential side
14 effect?
15 A. Yes.
16 Q. A downside of the operation?
17 A. Yes.
18 Q. Can we have a look at page 105,please. Take out the
19 address at the top. This is Mr Wisheart's operation
20 note of the operation of 9th March. We see in the
21 right-hand side that he was the surgeon and he explains
22 what he did.
23 If we go to "Diagnosis" towards the bottom of the
24 page, "recurrent coarctation of the aorta with
25 obstruction believed to lie between the left common
0013
1 carotid and right subclavian arteries". Then he
2 explains there had been a previous operation.
3 I want to take you please, Sharon, over the page
4 to page 106 107. I think it is towards the foot of the
5 page, you see the very last paragraph:
6 "Consideration was given as to whether further
7 steps should be taken. The only realistic option at
8 this stage being to insert a tube from the ascending to
9 the descending aorta. I felt, however, that in view of
10 the preoperative diagnosis and regardless of the
11 possibility of operative findings the aorta had been
12 reconstructed as might have been anticipated. In view
13 of the damaging long-term consequences of a tube graft,
14 I felt it was best to accept what had been done and to
15 review the matter at as early a date as necessary with
16 both echo and catheter investigations."
17 Have you seen that note before?
18 A. No. Mr Wisheart did explain that the -- because the
19 operation took a really long time this one, he explained
20 that he put in first one patch and the pressures above
21 and below the narrowing was the same so then he put in
22 a second patch which he took from Andrew's arm. He did
23 say that although the pressure still remained the same,
24 the femoral pulses felt stronger in his legs so
25 therefore he thought he had done quite a -- you know,
0014
1 it had been fine and he said as long as the area grew
2 with Andrew as Andrew grew, it should be okay.
3 Q. It might be thought from the passage I have read to you
4 that Mr Wisheart knew at this operation that Andrew was
5 not 'out of the woods' by any stretch of imagination?
6 A. Yes.
7 Q. What did you understand the position to be after this
8 operation of March 1994?
9 A. As soon as he had come up -- Mr Wisheart came up about
10 11.30 and explained that he was not as pleased, the
11 operation took long, it took two patches like I said,
12 but he did seem really pleased as long as -- he did say
13 as long as the area grew with Andrew that he would be
14 okay.
15 Q. Mr Wisheart did, you say in your statement --
16 A. He did not mention any further surgery at this point,
17 no.
18 Q. He did not say one way or the other, did he, whether
19 there would be a need for further surgery?
20 A. No, he did not say at all.
21 Q. Neither that there would be nor there would not be?
22 A. There would be or there would not be, no.
23 Q. Maybe that is because he wanted to see what the further
24 echo and catheter investigations revealed?
25 A. And I think he was hoping that the area would grow with
0015
1 him, from the way he spoke.
2 Q. Up until this time, this is the early part of 1994,
3 Andrew's care had always been at the Children's
4 Hospital?
5 A. Yes.
6 Q. He had never been to the BRI?
7 A. No.
8 Q. But you had been to the BRI, had you?
9 A. Not at this point, not until July.
10 Q. By July 1994 you did have some second-hand experience of
11 the BRI?
12 A. Yes, Andrew's little friend Max who was born on the same
13 day as Andrew.
14 Q. That is Max Johnson, and we have heard already in the
15 Inquiry from Max's mother, who is here today, I think?
16 A. Yes.
17 Q. Tell us a little bit about what you learned then.
18 A. Max had an operation, he had an operation when he was
19 first born and was due this big surgery. We got really
20 close --
21 Q. Max was born, was he --
22 A. Max was born on the same day as Andrew, we met on ITU in
23 the Children's Hospital. We found out we live really
24 close to each other and got good friends and Andrew and
25 Max, you know, we would get them together. So once Max
0016
1 had his operation I just had to go and see him to see
2 how he was coming along.
3 When I first went in and saw Max I was -- I know
4 we were used to the Children's Hospital so it was quite
5 frightening going in there, he was in a big single bed
6 and he was a tiny little 7-month old baby, it was really
7 upsetting to see him. There were ice packs all round
8 him, he was really quite poorly at this time and I can
9 remember a nurse doing suction on little Max and she
10 used the same tube to clean his nose, his mouth and then
11 went down the ventilator all with the same catheter
12 tube.
13 I know at the Children's Hospital when they did
14 this with Andrew, every time they did suction, even if
15 it was in the mouth twice, they would use a new clean
16 tube each time they would do this, so I felt their
17 hygiene levels were not as good as the Children's
18 Hospital. I did say to Julie, "I don't like it, it is
19 not as good here as it is at the Children's Hospital".
20 Q. Max died on 12th July, did he not, 1994?
21 A. Yes.
22 Q. If we go in your statement to WIT 11/14, paragraph 31,
23 you refer there to 12th July. About six or seven lines
24 down, you say:
25 "I knew that Max had died whilst in the care of
0017
1 Mr Dhasmana at the BRI. I had watched Mr Dhasmana doing
2 his rounds at the BCH. I had the impression that
3 Mr Wisheart was the better surgeon and that Max's care
4 at the BRI had not been as good as that which Andrew had
5 received at the BCH. I remember thinking 'at least
6 Andrew's got a different surgeon'."
7 You and Andrew had no experience yourselves of
8 Mr Dhasmana?
9 A. No.
10 Q. But at this stage you were full of confidence with
11 Mr Wisheart?
12 A. Yes.
13 Q. Because Andrew had been very sick when he was initially
14 admitted to the Children's Hospital, had pulled through
15 and had had by now two apparently reasonably successful
16 operations --
17 A. Yes, from the time of the second operation Andrew really
18 did thrive, he started taking solids and he was growing
19 really well and his development you know was really good
20 as well.
21 Q. In the summer 1994 you had, I imagine, a good deal of
22 faith in Mr Wisheart?
23 A. Yes, and lots of respect.
24 Q. Can we move to September 1994. If we go to MR 572/80,
25 the very bottom of the page (there is an address at the
0018
1 top), "Provisional diagnosis", the second line says
2 "Requires further surgical intervention"; do you see
3 the last line of handwriting just above the word
4 "signature"?
5 A. Yes.
6 Q. In your statement you say that "after this
7 catheterisation was performed, Dr Martin said that
8 Andrew would need another operation in 6 to 12 months
9 time".
10 A. Yes, at this time he did say 6 to 12 months.
11 Q. That would have been some time between March 1994 and
12 September 1995. The twelve months would have expired
13 before October or November 1995?
14 A. Yes.
15 Q. You did not at this stage have any clear idea as to when
16 within that period the operation might take place, did
17 you?
18 A. No, not really. On the second operation when he had his
19 catheter, you know, I knew within about a month he would
20 be having surgery but I did not know when he would be
21 having it this time.
22 Q. You say in your statement that you saw Mr Wisheart in
23 November 1994 in an outpatients appointment with
24 Andrew.
25 If we go over the page to page 81 in these medical
0019
1 records, we see towards the bottom, "10/10/94":
2 "Discussed at meeting". You did not attend any meeting
3 on 10th October 1994 about Andrew's care, did you?
4 A. No.
5 Q. We have seen this was a meeting among the clinicians:
6 "Discussed at meeting risks of further repair
7 would be high" and then there is a reference to "tube to
8 be placed from the ascending aorta to the descending
9 aorta with hypothermia and possible bypass".
10 Did you understand that the further operation
11 which the catheter had shown was necessary, it carried
12 high risk?
13 A. Pardon?
14 Q. You understood a further operation was going to be
15 necessary; did you understand that was a risky
16 operation?
17 A. No, my meeting with Mr Wisheart when he discussed the
18 surgery, he said he wanted to do it in the January. He
19 said "We will let you have him home for Christmas and we
20 will do it in the January". He said he would need to go
21 on bypass therefore it would have to be in the BRI and
22 this really upset me, I was really distressed, I went to
23 the door and wanted to leave and I said I did not want
24 him there, not after what happened with little Max, and
25 then he sat me down and spoke to me and reassured me and
0020
1 said "Andrew needs to be done there because he needs the
2 bypass available to him".
3 Q. The reason for that was that Mr Wisheart's previous
4 operation had been a patch repair?
5 A. Yes.
6 Q. And here is a discussion of the clinicians coming to the
7 conclusion that a further repair was not really an
8 option --
9 A. No, he said he had to put this tube in.
10 Q. -- and the only other option was to put the tube in?
11 A. Yes.
12 Q. And that could only be done on the bypass?
13 A. He did not say definitely, he said "the bypass needs to
14 be available", because if the surgery takes too long
15 because of the risk to Andrew's legs he said it would be
16 enormous, "so therefore we need to have the bypass
17 available for Andrew".
18 Q. We saw in the operation note remarks that Mr Wisheart
19 had said that the only realistic option was to insert
20 the tube from the ascending to the descending aorta?
21 A. This was the first I knew of the tube.
22 Q. As the facilities were at the time, the operation to
23 insert the tube could only safely be done either under
24 bypass or with bypass available and so that meant
25 necessarily the operation, if it were to be done in
0021
1 Bristol, could only be done at the BRI?
2 A. Yes.
3 Q. You saw Mr Wisheart in November 1994. Still at that
4 time there was no firm date, was there, for the further
5 operation?
6 A. Well, he did not give me an actual date to bring Andrew
7 in. He said I could have Andrew at home for Christmas
8 and then bring him in in the January, so I just expected
9 I would get a letter through the post.
10 Q. Did you get a letter?
11 A. No.
12 Q. Go to MR 570/43. Have you seen this letter before?
13 It is a letter from Dr Martin to Dr Barwell,
14 9th March 1995.
15 A. No.
16 Q. Andrew did attend a clinic, did he not, on
17 28th February?
18 A. Yes.
19 Q. With Dr Martin?
20 A. Yes.
21 Q. We see what Dr Martin says, that Andrew was just
22 starting to walk, he says in the second line. Look at
23 the last paragraph:
24 "As you know", he says to Dr Barwell "he [that is
25 Andrew] is due to have further surgery to the aortic
0022
1 arch. This has had to be deferred for logistic reasons
2 at the moment, but I would anticipate him having his
3 surgery over the next few months. I have given him
4 a backup appointment for the clinic here in three
5 months."
6 Three months from 28th February would take us to
7 the end of May 1995?
8 A. He was having more regular appointments than that. He
9 did have one in the January. Dr Martin was not there,
10 but we saw Dr Skinner then because at this time I still
11 found it hard to believe that Andrew needed surgery, he
12 was really well in himself. Dr Skinner was really
13 helpful and he took me down to the cardiac catheter and
14 showed me the actual pictures to show me how severe
15 Andrew's narrowing was and he did explain that with the
16 high blood pressure that Andrew -- he was at a high risk
17 of a stroke or a brain haemorrhage.
18 Q. Because the arch of the aorta was very narrow?
19 A. They are just so narrow that the blood pressure was all
20 -- really high blood pressure.
21 Q. And the tube was effectively going to bypass --
22 A. Yes, and his legs -- sometimes after a bath his legs
23 would go quite a strange colour.
24 Q. If we scan down this page a little more we see it is
25 copied to Mr Wisheart.
0023
1 A. Yes.
2 Q. You remember a little earlier we saw the operation was
3 to take place within 6 or 12 months of September 1994.
4 A. Yes.
5 Q. Here is Dr Martin saying that he anticipates surgery
6 over "the next few months" as he puts it?
7 A. Yes.
8 Q. In April 1995 there was a television programme which
9 discussed paediatric cardiac surgery at Bristol.
10 A. Yes.
11 Q. You became aware of that?
12 A. Yes, we wondered if this was why the delay was with
13 Andrew's surgery month after month, we kept wondering
14 why he was not being taken in.
15 Q. So you telephoned, did you not?
16 A. There was a help line at the end of the programme.
17 Q. You telephoned the help line?
18 A. Yes.
19 Q. You say you spoke to a cardiologist?
20 A. Yes, he said his name but I cannot remember what his
21 name was.
22 Q. It was a man?
23 A. Yes, a man.
24 Q. It was not Dr Martin?
25 A. No, it was not Dr Martin nor Dr Skinner, it was not one
0024
1 I was familiar with.
2 Q. You also spoke to Helen Vegoda?
3 A. Not at the same time. I think I rang her after, yes.
4 Q. Around the same time you spoke to Helen Vegoda?
5 A. Yes.
6 Q. Did the cardiologist and Helen Vegoda both --
7 A. They really put my mind at rest. They assured me there
8 was only a problem with the switch operation and the
9 media were blowing things out of proportion.
10 Q. Did you know what the switch operation was?
11 A. No, I did not even realise at that time that was what
12 Max's operation was.
13 Q. Did you know which surgeon or surgeons carried out
14 switch operations?
15 A. No, no.
16 Q. Did you think there was any reason to be concerned about
17 the type of condition that Andrew had?
18 A. No, I was always told Max had such a severe operation
19 compared to Andrew because I did keep comparing and
20 I kept worrying the same would happen with what they had
21 done with Max. So, no, I was just really reassured that
22 Andrew only had a coarctation, although it was a severe
23 coarctation.
24 Q. Shortly after you saw the programme, Andrew again saw
25 Dr Martin in his clinic, did he not?
0025
1 A. Yes.
2 Q. On 25th April 1995?
3 A. Yes.
4 Q. I think, as you say in your statement, at that time you
5 did not mention having seen the programme to Dr Martin?
6 A. No, I was fully assured there was not a problem with
7 Andrew's type of surgery.
8 Q. At this meeting there was a discussion, was there not,
9 about which surgeon should carry out the further
10 operation; is that right?
11 A. Yes, I did not know when the new surgeon was starting.
12 Q. What did Dr Martin say about the various surgeons?
13 A. He just said a new surgeon would be starting, he did not
14 say when. He said obviously -- he knew I had concerns
15 about the BRI, he said "When he starts he will be
16 starting at the BRI, but then move up once it moved to
17 the Children's Hospital".
18 Q. Did you know when the open heart surgery was going to
19 move to the Children's Hospital?
20 A. I do not know. I have September in my head, but I do
21 not know if that is after, like a "now" thing.
22 Q. I think in fact it did not happen until after that?
23 A. Yes.
24 Q. Dr Martin was asked about this when he gave evidence to
25 the Inquiry and he said in evidence -- Day 77,
0026
1 page 155 -- that he personally felt there was some
2 advantages to Andrew continuing under Mr Wisheart's care
3 because he had done the previous surgery and the surgery
4 Andrew needed did not fall into a category that the
5 protocol that had drawn up internally in the hospital at
6 that stage suggested should not be done.
7 Do you remember Dr Martin expressing the view that
8 there were some advantages to --
9 A. What, during that appointment?
10 Q. -- Mr Wisheart?
11 A. No, when he said "Who would you like to do the surgery,
12 the new surgeon or Mr Wisheart?", I said I really could
13 not make that decision in case I made the wrong
14 decision. I said Mr Wisheart had done Andrew's two last
15 operations and he knew Andrew and I said but the new
16 surgeon, I said, if he did this surgery he would have to
17 do Andrew's next surgery because I was told by having
18 this tube that as Andrew grew he would have to have
19 another tube put in when he was about 7 or 8 and another
20 at probably about 15. So I knew that if he had the new
21 surgeon, he would need him -- so I just left, I was
22 really confused and --
23 Q. Why would it have to be the new surgeon who would do a
24 further operation?
25 A. Because I was aware that Mr Wisheart was eventually
0027
1 giving up surgery on children when it did move.
2 Q. Who told you that?
3 A. I do not know.
4 Q. Can we have a look at HA(A) 146/113. If we scan down
5 the page, you may not have seen this before, Sharon, it
6 is the protocol.
7 A. I think I have seen it just from coming to the Inquiry.
8 Q. You see paragraph 2:
9 "From the 1st May, Mr Wisheart, Mr Dhasmana,
10 Mr Pawade and the paediatric cardiologists will discuss
11 Mr Wisheart's outstanding waiting list, and the transfer
12 of patients will be agreed. Mr Wisheart will continue
13 to operate on a few children, in the couple of months
14 following the 1st May, where the parents, children and
15 cardiologists wish."
16 Then there is a paragraph that does not apply to
17 Mr Wisheart. At 1.3, just a little above that:
18 "Mr Wisheart will continue to operate on children
19 over 1 year of age for all conditions excluding the AV
20 canal", and that was in the period up to 1st May.
21 So Dr Martin was correct to say that the operation
22 which Andrew needed did not fall within the list of
23 operations that Mr Wisheart was not to carry out, and we
24 see here that the protocol did provide for Mr Wisheart
25 to operate "in the couple of months", as it puts
0028
1 it"following the 1st May where parents, children and
2 cardiologists wish".
3 At this stage, Andrew having had two previous
4 operations, having seen the programme, having spoken to
5 the cardiologist, having spoken to Helen Vegoda, did you
6 have any reason to have lost any of the faith that you
7 previously had in Mr Wisheart personally?
8 A. No, I was always assured that there was not a problem
9 with Andrew's type of surgery. I had never ever seen
10 any of this, I have never ever seen the Marc de Leval
11 report, the Hunter/de Leval report which mentioned he
12 was a high risk surgeon. Obviously if I had seen that,
13 there was no way Andrew would ever have had surgery.
14 Q. We mentioned a little minute ago that Andrew went to see
15 Dr Martin in the clinic on 25th April?
16 A. Yes.
17 Q. We will come back to the letter I want to look at.
18 Andrew in the end did have his operation, did he
19 not, on 1st May?
20 A. Yes.
21 Q. Why was it that he had his operation then as opposed to
22 1st June or 1st July or some other time?
23 A. I am not sure. After this appointment with Dr Martin
24 I went home, I was really confused, I did not know who
25 was going to be doing Andrew's surgery at this time and
0029
1 I rang up -- every month I was ringing up Kate,
2 Mr Wisheart's secretary, to see where Andrew was on the
3 list and when he was due in because I had a friend --
4 her child was suddenly rushed in (another friend who
5 happened to be Judith's next door neighbour), her son
6 was rushed in with a couple of days spare and I really
7 did not want this to happen with Andrew.
8 So I explained my concerns to Helen Vegoda that
9 I did not want this so she gave me Kate's telephone
10 number. So each month I would wring and see if Andrew
11 was on the list and each month she would say "no, he is
12 not on the list for this month". After this appointment
13 I rang the next morning to see if Andrew was still on
14 the list. I thought if he was obviously -- if Mr Pawade
15 was doing Andrew's operation surely he would not be on
16 Mr Wisheart's list any more, so I rang Kate to see where
17 Andrew was on the list and if there was a likelihood of
18 when he would be having his surgery because I just did
19 not know when it was and all the time I had this worry
20 of if he had a brain haemorrhage or a stroke while I was
21 caring for him.
22 She said Mr Wisheart was currently doing his list
23 so I put the telephone down and I suppose about an hour
24 or two later she rang and said "bring Andrew in
25 tomorrow" and I said I did not want Andrew to be an
0030
1 emergency appointment and she said "he is not an
2 emergency appointment, he just happens to be first on
3 Mr Wisheart's list for May and Mr Wisheart is very late
4 doing his list because of Easter, because of the Easter
5 break".
6 I said I needed more notice, could it be put off
7 until later on in the month and she said no, because he
8 was the first on the list and people had been informed
9 and she said "I will see if we can delay it a little".
10 She rang back again about an hour after this and said to
11 bring him in the next day instead, which was the Friday,
12 "he is still having his operation on 1st May but you
13 have to take him in a couple of days before for them to
14 do the postoperative checks".
15 Q. Did you know Dr Martin had written a letter dated
16 5th May 1995 to Andrew's GP saying that Andrew would be
17 seen again in the clinic in three months time?
18 A. No, not then.
19 Q. And that that letter was dictated as a result of the
20 clinic that Andrew attended on 25th April?
21 A. No.
22 Q. If I told you the letter said "Mum is happy with the
23 previous plans for surgery and does not mind whether it
24 is undertaken at the BRI or the BCH"?
25 A. No.
0031
1 Q. Do you remember discussing about that?
2 A. No, we did not discuss -- no, I always expressed my
3 concerns about the BRI.
4 Q. It would seem that at the clinic on 25th April 1995
5 Dr Martin had no reason to expect that Andrew would be
6 undergoing his surgery as in fact happened within the
7 week?
8 A. No, he did not. I think he was quite surprised once
9 Andrew had come up from surgery, I was surprised he was
10 not about and then when they had come down, and I really
11 felt he did not know that Andrew was there at that time.
12 Q. Can you really explain why Andrew, having seen Dr Martin
13 on 25th April without any apparent immediate urgency for
14 surgery, did in fact have his surgery on 1st May, just
15 a few days later?
16 A. No. They told me Mr Wisheart was late doing his list
17 for May. I do not know whether or not they did not
18 correspond with each other and tell each other, I do not
19 know.
20 Q. Was it ever suggested to you that in fact Andrew's
21 surgery might be capable of being delayed beyond
22 September 1995 which was the end of the 6 to 12 month
23 period Dr Martin had originally quoted to you?
24 A. No, because when I would speak with Mr Wisheart in the
25 November and he said the January and then in the January
0032
1 I spoke with Dr Skinner, every time I would have an
2 outpatient appointment Dr Martin would say "I will make
3 this provisional appointment, but I doubt I will see you
4 in my next clinic because he is due to have his
5 operation any time", and every time I would say "why has
6 not he been called in yet" and he would say "we have had
7 a lot of emergencies".
8 Q. The operation Andrew had on 1st May was to put in the
9 tube from the ascending to the descending aorta?
10 A. Yes.
11 Q. That was in fact carried out by Mr Wisheart?
12 A. Yes.
13 Q. After the operation which was on 1st May which was
14 a Monday, I think?
15 A. Yes.
16 Q. Andrew was returned to the Intensive Care Unit at the
17 BRI. He stayed there, did he not, for some days?
18 A. 7, yes, a week.
19 Q. I think you want to tell us, do you not, particularly
20 about something which happened the day after the
21 operation?
22 A. When he first came up from surgery he did not look well
23 straightaway, he was really grey and swollen. All
24 I remember was Julie, her excitement when Max came up
25 because for the first time Max was pink and she had rang
0033
1 and said "he is pink", because Max was always blue, he
2 had really blue fingers and that and she said "oh, his
3 little fingers are pink" and she was told by the doctors
4 not to build her hope up too much because sometimes that
5 is a good effect of being on the bypass because that
6 puts the blood all round the body all properly. So
7 I had that picture of Max pink and Andrew so grey and
8 swollen and he just looked so awful.
9 So I rang Julie just to double-check, I said
10 "Julie, he is grey, it is not right, something has gone
11 wrong" and Julie did not like the sound of it and I kept
12 expressing this to the nurses and they just kept saying
13 it was where he was cooled down for a bypass and I said
14 "surely Max must have been cooled down for it as well,
15 why was he pink and Andrew grey", and they kept assuring
16 me this was normal, this is the way it happened.
17 They did tell me -- then Andrew was coming off
18 bypass, off the ventilator the next morning and I said
19 I felt that was too soon because at the Children's
20 Hospital they did everything gradually. I knew, like,
21 Andrew at 18 months old, I knew he was not just going to
22 lie on the bed with all these tubes and drips coming out
23 of him, he is going to fight. They had him hardly
24 sedated at all, he was really awake and thrashing about
25 the bed and trying to crawl off the bed.
0034
1 We were really really stressed, there was no one
2 about and the assistant anaesthetist and a young doctor,
3 they just seemed to stand there nodding and they would
4 ask for more sedation, even the nurse was saying "this
5 child really needs to be sedated". They could not seem
6 to sedate him, they would put a little bit into their
7 line and within half an hour he would be awake again.
8 The first night he was awake all night, thrashing about
9 the bed all night and they still took him off the vent
10 the next morning.
11 By about 11.00 his whole lungs were sinking in, he
12 was really struggling to breathe and they gave him
13 a little bit of sedation because we were trying to hold
14 the oxygen mask on him and he kept pulling it off, so
15 they gave him a little bit of sedation just as
16 Mr Wisheart came round so he had sort of stopped
17 thrashing about so much, but he was really really
18 struggling with his breathing, his lungs were completely
19 sinking in at the bottom.
20 I said to Mr Wisheart "this is wrong, Andrew
21 should still be on the ventilator", I said "it was not
22 done like this at the Children's" and he said "he is
23 fine". I said "look, he is not breathing very well" and
24 he said "it is good exercise for his lungs" and this
25 horrified me. I really felt no one was wanting to help
0035
1 him.
2 Q. For the rest of that week Andrew was largely --
3 A. They eventually reintubated him about 4.00 that
4 afternoon, he was near to arrest when they put the
5 ventilator back on him.
6 Q. He was sedated, was he not, for much of the rest of that
7 week?
8 A. Yes, they sedated him all week.
9 Q. On 7th May 1995 an EG was carried out, was it not, on
10 Andrew?
11 A. I think that was up at the Children's Hospital. What
12 happened was, as he was waking up from his sedation, his
13 hand kept twitching and I kept saying to the nurses
14 "what is wrong with his hand, why is he doing that" and
15 they kept saying it was a side effect of the drugs and
16 the more he was waking up the worse his signs seemed,
17 his eyes were rolling up in his head, he was making
18 horrible groaning and moaning noises, they just said it
19 was where his throat felt funny after he had had the
20 ventilator in for a week --
21 THE CHAIRMAN: Forgive me for interrupting, but keep your
22 eye on the Stenographer because she needs to catch every
23 word you say.
24 MR MACLEAN: Can we go to MR 572/120? These are the notes;
25 you see at the top of the page: "Transfer from BRI", so
0036
1 Andrew has now gone back to the Children's Hospital.
2 Can we go down the page a little: "EEG, the recording
3 is grossly abnormal... This usually indicates severe
4 brainstem dysfunction or compression which could be
5 either due to raised ICP or localised infarctions."
6 If we go to page 121, 122 which is the next page,
7 Dr Skinner who writes this note, says:
8 "I have spoken to Mum and explained the CAT
9 scan. The EEG was less good and the prognostication in
10 terms of recovery was very difficult. She knows there
11 has been a cerebral insult."
12 This is 7th May; do you remember that discussion
13 with Dr Skinner?
14 A. Yes, Dr Skinner spoke about -- I was really really upset
15 and I was wondering if something had gone wrong for him
16 to come up grey and they were not worried. If it was
17 not that, if it was something wrong with the way he
18 suffered the next day, if he had a lack of oxygen then
19 he was not coping with his breathing.
20 Q. You were also seen I think by Dr Martin two or three
21 times, three times I think the notes suggest, on 8th May
22 and again on 11th and the 25th when --
23 A. I did actually see Dr Martin on the 5th, I think he had
24 come in from home because -- on the 7th, yes -- I was
25 really upset with the way Andrew was waking up and the
0037
1 nurses just kept reassuring me that there was not
2 a problem, it was all side effects of the drugs and
3 I said "I have a feeling he is brain damaged" and they
4 said, "no, no, he is okay". I said "I want a doctor to
5 tell me he is not brain damaged" and with this they did
6 call in Mr Wisheart and Dr Martin to come and speak with
7 me and they had come in from home.
8 Q. You saw Mr Wisheart again in the Children's Hospital on
9 10th May. You make reference in your statement to
10 having seen him only once at this time.
11 A. I had seen him once the day after surgery and just that
12 day on the 7th. I think there was one other brief time.
13 Q. Mr Wisheart's comment that you referred to a moment ago
14 about good exercise for Andrew's lungs, that is
15 something that particularly upset you?
16 A. Yes, that was, because I thought he was really really
17 struggling at that time and I felt it was only me who
18 could see how much Andrew was struggling.
19 Q. After that comment was made, was Andrew put back on the
20 ventilator?
21 A. No, it was a good four or five hours after.
22 Q. If we go in the notes to 212, there was a Dr Sharples
23 who was concerned by this time with Andrew's care, is
24 that right?
25 A. Yes, she was a neurologist.
0038
1 Q. Go down the page a little 19th May:
2 "Mum and dad seen by Dr Sharples separately.
3 Dr Sharples has explained that we aim to wean
4 ventilation over the weekend... Dr Sharples explained
5 to dad that movements are more than likely due to
6 bypass. Andrew's movements could last weeks to months."
7 She was not sure about recovery, "could be
8 complete or there could be some long-term problems, but
9 we will have to wait and see".
10 The prognosis in terms of the neurological trouble
11 Andrew had was very guarded at this time?
12 A. Yes.
13 Q. There is no suggestion --
14 A. We were always thinking he could recover, we were always
15 hoping he could recover.
16 Q. I think your husband was particularly frustrated. He
17 was not able, for work reasons, to be around as often as
18 you were and was frustrated at the lack of progress?
19 A. Yes, every time he came in Andrew was just no
20 improvement, he was biting his mouth, there was blood
21 everywhere all the time, he had bit the complete edge
22 off his tongue. I must admit, you know --
23 Q. If we go to page 176 in the notes we see that your
24 husband is recorded as saying, second line down:
25 "Father is extremely frustrated and angry that he
0039
1 does not understand what is going on"; was that
2 something you shared at this time?
3 A. Yes, they just kept trying lots of different drugs and
4 nothing seemed to work; he just suffered these
5 continuous rolling movements, his whole body was
6 rolling. One minute he was completely sedated and
7 paralysed so that he did not do these movements and then
8 the next minute, and for 5 days solid he just had these
9 movements day and night, he was not sleeping and he
10 started passing blood which, he said, was a sign that he
11 was not wasting his muscles away, they said it was like
12 he was doing continuous aerobics all the time.
13 Q. Did you have the impression that the doctors themselves
14 were struggling to understand what was going on?
15 A. Yes, Dr Martin said he had come across it before.
16 I asked Alison Hayes if she had seen it before, she said
17 she had never seen it. When Ash Pawade was round on the
18 rounds, I said "have you ever seen this before?" He
19 said "it is rare." I said "can he get better?" He sort
20 of put his head down and he did not say anything.
21 Q. If we go to 184, the bottom half of the page: 26th May,
22 3.00 in the afternoon, "potential for recovery - but may
23 take a further 4 plus weeks".
24 Still at this stage there was, as far as the
25 doctors were concerned, some hope for recovery from the
0040
1 neurological problems Andrew was suffering from?
2 A. Yes. We had a meeting, me and my husband with Dr Martin
3 and Dr Sharples and we said if he did recover what would
4 his recovery be like. They said they had looked at
5 a lot of literature and the worst case in the world
6 lasted for 8 weeks, some children were left -- like of
7 the actual movements this is -- that the actual
8 movements, they had lasted for 8 weeks and some children
9 could be really withdrawn at first and then make an
10 almost full recovery but some do not make a full
11 recovery. We just lived on the hope that he would make
12 a recovery.
13 Q. Sadly Andrew did not make a recovery, did he, on
14 30th May 1995 he suffered cardiac arrest?
15 A. Yes.
16 Q. And died that day?
17 A. Yes, he had been down for a bronchoscopy and came up and
18 had a cardiac arrest after.
19 Q. It would see the immediate cause of his death was, what?
20 A. They said to me -- I said "was it all drugs and
21 everything or the anaesthetic on top, his body could not
22 take no more?" Dr Joffe looked up and said "it was the
23 pneumonia" and that was the first I heard of pneumonia.
24 Q. Nobody had mentioned the word "pneumonia" before?
25 A. No.
0041
1 Q. How did you understand Andrew to have contracted
2 pneumonia?
3 A. On the Thursday before he aspirated on a feed and
4 I think that must be what caused it. From all his
5 movements he had a very sore bottom and he was laid on
6 his stomach and he had aspirated. I think that is what
7 caused it.
8 Q. Subsequently you had I think a couple of meetings with
9 Dr Martin, is that right?
10 A. Yes.
11 Q. Helen Vegoda I think was present as well?
12 A. Yes.
13 Q. Is that right?
14 A. I had lots of questions, yes.
15 Q. Dr Martin wrote to you, did he not; set out in a fairly
16 lengthy note (as he saw it) the points that had been
17 discussed at one of these meetings, is that right?
18 A. Yes.
19 Q. In particular he wrote to you summarising a meeting
20 involving you, Mrs Vegoda and himself on 21st February
21 1996?
22 A. Yes.
23 Q. You have seen that note?
24 A. Is that the note when he replies back to my questions in
25 writing?
0042
1 Q. Yes. Let me show you, it is MR 572/4. You had set out
2 a number of questions which you had discussed with
3 Helen Vegoda, is that right?
4 A. Yes, every time I would see Dr Martin I would come away
5 with more questions because he would answer in such away
6 that you would come away thinking you had not really got
7 an answer, so I thought by putting them on paper I might
8 have got some.
9 Q. Dr Martin says on this page, in the second paragraph
10 that there had been evidence of widespread damage, it
11 transpired, to the nerve cells of Andrew's brain?
12 A. Yes.
13 Q. He also says that it was most likely that occurred at
14 the time of the bypass?
15 A. Yes, they kept saying it was a side effect of the bypass
16 machine.
17 Q. He also refers to the postmortem report and he makes a
18 point at page 6 of this note that there is no specific
19 cause of death that had been identified. It is not on
20 this page; do you remember that?
21 A. Pardon?
22 Q. That Dr Martin makes the point there was no specific
23 cause of death identified?
24 A. I cannot remember.
25 Q. Look at page 6, the second line:
0043
1 "One cannot pin down any specific problem as the
2 cause for Andrew's severe difficulties".
3 A. I do not think he meant the actual death, I think he
4 meant the difficulties with the movements and everything
5 from the brain damage, yes.
6 Q. He makes a point in a covering letter sent with this
7 note that if you wanted to correct any details or get
8 further information, then you were welcome to do so. Is
9 this the most recent correspondence you have had from
10 Dr Martin dealing with --
11 A. Andrew's case, yes.
12 Q. -- Andrew's case?
13 A. Yes.
14 Q. I do not, Sharon, want to deal with any other events
15 surrounding Andrew's case and I do not want to ask you
16 any more questions. However, there may be something you
17 want to say that I have not dealt with properly or
18 something you need to correct or amplify. If there is
19 then do feel free to say so now?
20 A. If I can just look for a few of my pointers quickly.
21 (Pause).
22 I did feel that once Andrew had been moved up to
23 the Children's Hospital it was almost immediate relief.
24 As soon as he got there -- he had awful bed sores on his
25 head and on his bottom where he had not been moved, he
0044
1 had a great big lump on the back of his head and as soon
2 as he got there they gave him a big silken pillow to lie
3 his little head on. He had a dentist come to see him so
4 he could be fitted with a gum shield so that he could
5 stop biting his mouth. When they bathed the nurse on
6 ITU even sort of gave him a massage with me to help him
7 relax. It was all these little special things that the
8 Children's Hospital did.
9 While Andrew was on ITU I witnessed a difference
10 in the care the children received from Ash Pawade.
11 While I was down in the BRI I actually had seen a child
12 come and as soon as she was stable she was moved up to
13 the Children's Hospital where I am sure I actually knew
14 she would get much better care.
15 I wish Andrew had the opportunity to have had him
16 as his surgeon, we will never know what difference this
17 could have made to Andrew's life. I think that is
18 enough.
19 When you lose a child your grief is unbearable.
20 All the days mingle into one. We have had to put up
21 with a lot. After losing it is so hard on the children,
22 Andrew's brothers, Anthony and Ashley, they have
23 suffered the loss like we have.
24 To go through the GMC and this Inquiry and still
25 be left with questions unanswered, I hope we do get lots
0045
1 of answers from this Inquiry. There are lots of
2 families that may never get to give their evidence or
3 may never have been able to do this.
4 I have made lots of friends and they have really
5 been supportive for me through this, they are also in
6 the same situation. There are lots of things, I could
7 sit here all day, but I think I had better stop now.
8 Q. Mrs Peacock, I am sure the Chairman will remind you that
9 there is still time to say anything else you wish before
10 the Inquiry comes to a close, which will not be for some
11 time yet.
12 Could I thank you for giving your evidence and ask
13 if the Panel have any other questions or comments for
14 Sharon.
15 THE CHAIRMAN: We do not have any questions, but I do notice
16 one of the things you say is that there may be
17 a perception that the Inquiry has concentrated on switch
18 operation. I can give you an assurance that our terms
19 of reference require us to consider the whole range of
20 procedures and that is what we like to think we have
21 done, but we certainly will do.
22 Mr Lissack?
23 MR LISSACK: No questions, thank you.
24 THE CHAIRMAN: Mrs Peacock, thank you very much for coming
25 and spending the time with us, we have been helped.
0046
1 Thank you.
2 MR MACLEAN: It is probably appropriate now to have a short
3 break for 10 or 15 minutes.
4 THE CHAIRMAN: Let us say 15 minutes, that is until about
5 11.05.
6 (10.50 am)
7 (A short break)
8 (11.12 am)
9 MR LANGSTAFF: Sir, for the second session of the day we
10 have five parents. If I can invite them first of all,
11 Justine Eastwood and Sheila Forsythe, if they would come
12 forward to the chairs at the front and if Karen,
13 Michelle and Richard would take their seats, please, at
14 the table.
15 Could I ask you, Justine and Sheila, to take the
16 oath?
17 JUSTINE EASTWOOD (SWORN):
18 SHEILA FORSYTHE (SWORN):
19 MR LANGSTAFF: Could I ask you to do the same, please?
20 KAREN WELBY (SWORN):
21 RICHARD LUNNISS (SWORN):
22 MICHELLE CUMMINGS (SWORN):
23 MR LANGSTAFF: Michelle, let me begin with you because you
24 have been with us before, very early on in the days of
25 the Inquiry, you told us about the life and death of
0047
1 your daughter Charlotte.
2 MRS CUMMINGS: Yes.
3 Q. You have since them amplified your statement which is to
4 be found originally at page 123, pages 1 to 33, and you
5 have given us supplementary material since?
6 A. Yes.
7 Q. You are not going to repeat what you told us beforehand,
8 but you do want to deal with one or two particular
9 issues which we will reach in the course of the
10 discussions today?
11 A. Yes.
12 THE CHAIRMAN: Mr Langstaff, just to indicate my role
13 here, given that there are a number of you speaking, and
14 we have to make sure that we take down everything you
15 say, it may be helpful if whoever is speaking, the
16 microphone be moved a little from the base towards where
17 you are, and then it makes it a lot easier to hear and
18 record. I hope it does not interfere too much with your
19 ability to speak to us, but it certainly guarantees that
20 we can hear you.
21 MR LANGSTAFF: Justine, you are Justine Eastwood, and you
22 want to be known as Justine?
23 MRS EASTWOOD: Yes.
24 Q. You have given us a statement which begins at WIT 22/1,
25 and is signed at page 17. We will just show you
0048
1 page 17, if you can identify that as your signature for
2 us -- well, it is your statement, I think?
3 A. That is my statement.
4 Q. There are, I think, 118 pages of exhibits which
5 constitute a diary?
6 A. That is correct.
7 Q. Which you kept whilst your son Oliver was in intensive
8 care and at the Children's Hospital?
9 A. That is correct.
10 Q. And at the end of which, after a period of some very
11 considerable time, having been born on 7th October 1993,
12 sadly he died on 7th December 1994?
13 A. That is correct.
14 Q. So you share with Michelle, having had a child who was
15 treated and sadly did not survive to today?
16 A. That is right.
17 MR LANGSTAFF: Sheila, you are Sheila Mary Forsythe and you
18 want to be known as Sheila for the purpose of giving
19 evidence.
20 MRS FORSYTHE: Yes.
21 Q. We find your statement at WIT 515/1 to 7. I believe
22 your signature is at page 7?
23 A. Yes, that is my signature.
24 Q. Your son, Andrew, was born, was he, on 12th October
25 1985. He was diagnosed as suffering from an AVSD and
0049
1 was a Down's syndrome child?
2 A. Yes.
3 Q. You have a particular perspective because in consequence
4 of your experiences you are involved in the Down's Heart
5 Group?
6 A. Yes.
7 Q. So you have a perspective in the way in which different
8 hospitals and different people may approach treatment of
9 a Down's syndrome child?
10 A. Yes.
11 MR LANGSTAFF: Karen, you are Karen Welby?
12 MS WELBY: Yes.
13 Q. You are going to tell us about your daughter Jade, are
14 you, who was born on 22nd June 1983?
15 A. Yes.
16 Q. We see your statement at WIT 517/1 to 11, and that is
17 your signature at the end, is it?
18 A. Yes.
19 Q. Jade was born in 1983, but she had, I think, some 12
20 operations spanning a period of time from 1983 to the
21 present day?
22 A. 12 operations in Bristol, 19 altogether. 12 in Bristol.
23 Q. So you have a comparison you can make with other
24 hospitals and other institutions?
25 A. Yes.
0050
1 Q. And you can tell us something about how your view of
2 Bristol and its treatment changes, if it does, over the
3 period that is covered by this Inquiry.
4 A. Yes.
5 MR LANGSTAFF: And Richard, Richard Lunniss, we have your
6 statement, do we, at 516/1 to 7.
7 MR LUNNISS: Yes.
8 Q. And your son is William, who was born on 2nd December
9 1987?
10 A. That is right.
11 Q. He was diagnosed as suffering from a coarctation and
12 a VSD. He was treated successfully in Bristol?
13 A. Yes.
14 MR LANGSTAFF: What I am going to do is to ask a number of
15 you the questions individually at first, but please feel
16 free to join in and contribute because I know already
17 that you have somewhat differing perspectives from your
18 differing views and we cover, I think, the whole period
19 of time from 1983 through to the present day. We cover
20 different clinicians and indeed, you come from different
21 parts of the area, the geographical region served by
22 Bristol.
23 Particularly in your case, Justine, you have had
24 a very long opportunity to observe people closely at
25 work from a parent's perspective?
0051
1 MRS EASTWOOD: That is right.
2 Q. Can I focus for a moment on Oliver, and look at the
3 question of referrals.
4 Oliver went first to Cheltenham, did he?
5 A. He did.
6 Q. Were you able to form a comparison between Cheltenham
7 and Bristol?
8 A. When we first arrived in Cheltenham, I did not feel
9 very -- it was not that I did not feel very confident,
10 I just did not feel very happy. Nobody knew quite what
11 to do with us. Initially they suspected a heart murmur
12 and then a VSD, but we were not really getting any
13 answers. We were only there for 48 hours and then we
14 transferred to Bristol Children's Hospital, where
15 immediately both my husband and myself just felt an aura
16 of confidence. I think we were just quite relieved to
17 be there, to be quite honest. By this time we felt in
18 our hearts there was definitely something wrong with
19 Oliver, so it just felt that we were in the right place.
20 Q. So this is a reflection of the fact that the heart
21 expertise in the area was here rather than in
22 Cheltenham?
23 A. That is correct, yes.
24 MR LANGSTAFF: Karen, you first picked up that there was
25 something wrong with Jade when?
0052
1 MS WELBY: The day after her birth.
2 Q. How were you served by the clinic to which you went,
3 because it was in Treliske, was it not?
4 A. They looked at Jade and thought she looked a bit cold so
5 put her under a heat lamp, so I went to where the doctor
6 was examining her, so I walked across the room and she
7 said Jade had a heart murmur. A couple of days later
8 they told me if she was to have a chance, she needed to
9 go to Bristol, but we had a choice as to whether we kept
10 her in Truro and made her comfortable and let her die,
11 or went to Bristol and gave her a chance.
12 Q. So she was referred, just as Oliver was, fairly early to
13 Bristol?
14 A. Yes.
15 MR LANGSTAFF: What about the case of Andrew?
16 MRS FORSYTHE: We had to wait several months --
17 Q. We are losing your voice a little.
18 A. We had to wait several months. Andrew was diagnosed as
19 Down's at 2 months old by Dr Joffe. I am sorry, I tell
20 a lie: we went to see Dr Joffe and Andrew had his
21 diagnosis done in the April of 1986.
22 Q. He would be six months old, thereabouts?
23 A. Yes, but at that stage, in 1985, the optimum period for
24 operating on Down's children for an AVSD was actually at
25 about a year old. Obviously it has changed
0053
1 subsequently, and is very different now, but at that
2 time, everybody was saying an AVSD surgery should be
3 carried out at about a year old.
4 So we waited until -- we were put on the waiting
5 list and in fact were told month by month from about
6 June right through to the October to keep ringing, but
7 Andrew in fact had his surgery at 13 months old.
8 Q. When you say that the optimum time for surgery then was
9 12 months, that is a reflection, is it, Sheila, of what
10 you were told by the clinicians at the time? It is not
11 something you have an independent knowledge of?
12 A. No, it was what everybody, all the cardiologists were
13 telling the parents at that stage.
14 MR LANGSTAFF: William was Taunton?
15 MR LUNNISS: Yes.
16 Q. When was he picked up as suffering from a congenital
17 heart problem?
18 A. It was a little under three weeks after he was born. He
19 collapsed and -- he was a little bit blue around the
20 mouth. We took him to see his GP and he then promptly
21 got sent off to Taunton, where we were seen. William's
22 condition was stabilised and it was clear there was
23 something wrong with his heart. The next day he was
24 transferred to Bristol. I share Justine's emotion:
25 having arrived at Bristol, I felt not that everything
0054
1 was over, but at least we were in the hands of people
2 who knew what they were about, and were happy doing it.
3 Q. I suppose that was the purpose of your being transferred
4 from those who did not know as much to those who were
5 better able and better equipped to deal with it?
6 A. Yes.
7 Q. So it is what you expected to find, I imagine?
8 A. Things happened very quickly. One lives with hope
9 rather than expectation. There were a series of
10 impressions, each of which comes in a way independently
11 of the other. At the time I am not sure what we
12 expected to find at Bristol, certainly, I do not think
13 the relaxed atmosphere that there was there.
14 MR LANGSTAFF: Each of you had the support initially of
15 a partner, but in your case, Karen, you were not able to
16 stay together in Bristol, were you, for very long?
17 MS WELBY: No, I went to Bristol on my own by ambulance.
18 Q. Let me ask you to pause there and take the microphone
19 nearer, because you have a softish voice and we are
20 losing a little.
21 A. I went to Bristol at first by ambulance with Jade on my
22 own. There was no room in the ambulance for my husband
23 to come with me. He came up later that night and
24 arrived in the early hours of the following morning. He
25 stayed until Jade had her surgery and then had to go
0055
1 back, so I was completely on my own.
2 Q. When you say completely on your own, does that involve
3 the way you felt about it?
4 A. Yes.
5 Q. What support did you feel that you had?
6 A. I had no support. Jade was in the Baby Unit where there
7 was not, at that time, other children with heart
8 problems. Other children were in there with ear
9 infections or just overnight because they had
10 temperatures.
11 Q. 1983 was when this happened?
12 A. Yes.
13 Q. How has the support changed in the period during which
14 Jade has been receiving treatment?
15 A. There is now a lot more support. I got to know people
16 from the Heart Circle that were always there.
17 Q. Again, could you bring the microphone a bit nearer?
18 A. Later on there was support from the Heart Circle, but
19 there was not in 1983 and I do not think there was in
20 1984. I am not quite sure when I did start to get
21 support, because Jade had a lot of cardiac catheters.
22 It was definitely before 1989 when she had her next
23 major heart operation.
24 Q. As in effect a single parent, single in the sense you
25 were on your own, how valuable did you find that
0056
1 support, even though, later on, you had already had
2 experience of going to Bristol on earlier occasions?
3 A. It is much better. Much better to have the support of
4 other people.
5 MR LANGSTAFF: How did you find it, Justine, in the
6 1990s?
7 MRS EASTWOOD: In which part, the Baby Unit, the
8 Intensive Care or the BRI?
9 Q. Tell us how they compared.
10 A. Support-wise, do you mean?
11 Q. Yes.
12 A. We had each other. There was support. We did not
13 really take it because, you know, we worked together,
14 really. I think there was support for people if they
15 needed it with counsellors, the same with the BRI. In
16 the intensive care at the Children's Hospital, we really
17 got support from the nurses more than anything.
18 MR LANGSTAFF: I will come back to the nurses in a moment or
19 two, but if I can just go back to where we were
20 beginning, with the referrals of your children into
21 Bristol, you, Karen, had no choice, I think, as to where
22 Jade went; it was Bristol and that was it.
23 MS WELBY: Yes.
24 MR LANGSTAFF: Justine, did you have a choice?
25 MRS EASTWOOD: Yes, we did.
0057
1 Q. What choice was given to you when you were in
2 Cheltenham?
3 A. When we were in Cheltenham, because we were in a central
4 position, we had a choice between Birmingham, Oxford or
5 Bristol. We chose Bristol for personal reasons, because
6 the family were travelling over from the Channel
7 Islands, but we were given the choice.
8 Q. Was anything said to you about why you might prefer one
9 place to other?
10 A. No, never.
11 Q. So a choice, but no guidance?
12 A. No, not at all. I think more choice for travelling.
13 I think that was the reason. We were travelling from
14 Cheltenham, but it certainly was not because one place
15 was better than another. That was definitely never
16 mentioned to us.
17 Q. At any stage in any of your children's cases, was there
18 a question of whether Bristol remained the appropriate
19 place to be? Was there a question, for instance, of
20 referral onwards to Great Ormond Street?
21 A. I cannot quite remember exactly when it was, but it was
22 in the latter months. We were there for a year, so
23 I think it was -- I want to say about eight months in,
24 but without looking at my notes, I would not be quite
25 sure. Mr Dhasmana was considering a move to Great
0058
1 Ormond Street purely because we were running out of
2 options with Oliver. We were talking about tracheal
3 transplant, so he was actually in discussions with Great
4 Ormond Street.
5 Q. Because Oliver had the problem at the back of his
6 trachea, did he not?
7 A. Yes.
8 Q. The advice that you had, in terms of where to go, you
9 say nothing was said in favour of any particular
10 centre. It follows, does it, that nothing was said
11 against?
12 A. Absolutely. It was purely our choice, like I say, for
13 personal reasons why we chose Bristol, but nothing was
14 said against or for any of them.
15 MR LANGSTAFF: And of course, we note the date. Was any
16 information given to any of you, apart from Justine, as
17 to where your child might be referred?
18 (All indicate no)
19 Do you think you might have been given a choice or
20 not? Do you think it is helpful?
21 MR LUNNISS: At the time, I do not think we had much choice,
22 because William was needing an operation immediately,
23 the first time around, and it seemed fairly natural that
24 you continue with the same surgeon for his later
25 operation.
0059
1 MR LANGSTAFF: Michelle?
2 MRS CUMMINGS: I was going to say in our case, I do not
3 think there was any worry for us. Rob was already
4 registered at the BRI. He had already had his heart
5 surgery and was still under Mr Wisheart and Dr Jordan,
6 so for us, we were -- it did not enter our heads that,
7 you know, people may consider Bristol not the place to
8 go. We did not. We thought it was a centre of
9 excellence and we were very happy to go there.
10 Q. If you had been given a choice of somewhere else, you
11 would have said "What is wrong with Bristol, because we
12 have had very successful treatment with my husband
13 there"?
14 A. Exactly.
15 Q. Later on, you want to make a point, I think, about the
16 nature of consent that is sought and one of the points
17 you will be making is, I think, that information is
18 desirable for parents.
19 A. Yes.
20 Q. If it applies at that stage, should it, do you think,
21 apply at the stage of referral to one centre or another,
22 from the initial hospital, if there is time, taking
23 account of Richard's point?
24 A. I think parents do need as much information as they can
25 personally take on board and I think if information is
0060
1 going to be given to parents, it needs to be in a form
2 that can be understood and that misunderstandings are
3 less likely to happen, and I think perhaps with that,
4 you need consultation and I think that perhaps there
5 needs to be clear guidelines so that parents know what
6 to expect and what their options are. But I think in
7 1988 or 1987, for myself and Rob, these questions were
8 not being asked. There was no reason in our eyes for
9 them to be asked. We trust Mr Wisheart; we always have
10 done. We trust Dr Jordan, and always did, so that was
11 not a concept that we thought about at the time. We had
12 a sick child and we needed help and these people offered
13 to help her. I think that also is a major consideration
14 for families.
15 MR LANGSTAFF: Were you pleased from your perspective to
16 have been offered the choice?
17 MRS EASTWOOD: I am sorry, I have lost the question.
18 Q. I am sorry, I should have addressed the question to you,
19 it is my fault. You were offered the choice, albeit on
20 convenience grounds?
21 A. Right.
22 Q. That is something that you appreciated having been
23 offered?
24 A. Yes.
25 Q. Do you think you would have reacted well in the 1990s to
0061
1 have been told, "Well, it is Bristol we are sending you
2 to"? Would you have asked, "Well, why there, why not --
3 A. There would have been no reason to. As far as we were
4 concerned if we were being sent to a specialised centre,
5 there was no reason to doubt where we were going, or why
6 we were going. All we wanted to do was to get our child
7 to a place where they were going to try to help us. We
8 did not ask those sort of questions.
9 MR LANGSTAFF: Sheila, you have a particular perspective,
10 I think, on where parents might wish to go, particularly
11 in the case of a Down's syndrome child?
12 MRS FORSYTHE: We actually felt that we were extremely
13 lucky, in that we lived virtually on the hospital
14 doorstep of a regional cardiac centre and we had
15 absolutely no doubts and trusted Dr Joffe and trusted
16 Mr Wisheart implicitly. We did not even think to
17 question where we were being referred to.
18 In the middle of my statement, you will see that
19 prior to Andrew having surgery, in fact, two days
20 before, when he was in hospital, his pulmonary pressures
21 were found to have been very much increased, making his
22 surgery very, very risky. We did not actually have an
23 opportunity to think other than, "Do we have surgery?
24 because Mr Wisheart is offering surgery", or -- I mean,
25 we either took it or we said, "No, thank you" and
0062
1 probably Andrew would not be with us now, or would be
2 terminally ill.
3 At the time, my husband said "Absolutely no
4 question, we will have surgery". I doubted and went to
5 another family whom I knew, who had six weeks prior had
6 surgery and had lost the child, and they were very happy
7 to advise us to accept the surgery. But also, I had had
8 contact with a lady who subsequently did actually set up
9 the Down's Heart Group who knew a very global picture of
10 Down's syndrome. She was asking the question, should
11 she or should she not have surgery for her child.
12 She had asked the question in the Down's Syndrome
13 Association national newsletter and had a very wide
14 variety of input from parents. Some was very, very
15 positive and some was very, very negative. Also, at the
16 time, she obviously had contact with families who were
17 not having surgery because they had not been referred by
18 the cardiologists so presumably their children were
19 within the optimum surgical -- there was an ability to
20 offer surgery for them, but it was because of the
21 discrimination of the cardiologists in those -- there
22 were two centres that we knew of, that children with
23 Down's syndrome were not being referred.
24 So with that, for a quick afternoon, to sort of go
25 out and find out all this, we then had no qualms about
0063
1 having surgery for Andrew.
2 Q. So the picture that you were given was that in some
3 parts of the country Andrew would not have had the offer
4 of surgery?
5 A. That is right.
6 Q. That was the information that you had, that he was being
7 given in Bristol?
8 A. That is right.
9 Q. The reason he might not have been offered elsewhere
10 appeared from the enquiries you were making to be
11 because he was a Down's syndrome child?
12 A. That is right.
13 Q. Was there any sense of hesitation at all in Bristol in
14 offering an operation?
15 A. Absolutely not.
16 Q. Was there any sense, to you, that the Bristol unit
17 treated Down's syndrome children in any different way
18 than they might treat other children?
19 A. Absolutely not.
20 Q. One of the difficulties that you were mentioning,
21 I think, was the difficulties, possibly, of taking in
22 information and of needing to trust or to have
23 confidence in what the doctor was saying, even if it was
24 not always easy to follow.
25 This is where I think we come to back to the issue
0064
1 of support. If I can just ask each of you quickly, you
2 each, I think, with the exception of Karen, had the
3 regular support of a partner whilst your child was in
4 hospital. Does it help, do you think, to have two of
5 you listening to what the clinician is saying by way of
6 explanation, rather than to have to take the whole
7 burden on one pair of shoulders?
8 MR LUNNISS: Undoubtedly, not only because you hear
9 different things and you cannot go and --
10 Q. Can I stop you there? You hear different things?
11 A. Yes.
12 Q. Do you have a particular memory of anything?
13 A. Well, my memory is not of specific occasions, but I know
14 that Deborah will remember one aspect of the
15 conversation; I will remember different bits,
16 overlapping, but we will not necessarily have a -- we
17 would together collectively have picked up most,
18 I think, of what was available, but individually,
19 I think we would have had a very different picture.
20 The second point I would make is that the
21 information that we gathered, if not on a sort of
22 24-hour basis, we were not there the whole time, was
23 through being there, one or other or both of us through
24 most of the day, sat through all the periods during
25 which rounds were being made. Often visits would be
0065
1 made by one of the medical staff at a time that one of
2 us would be absent, or perhaps both of us might have
3 been absent, we had not been able to make sure that we
4 had as far as possible someone there always, to hear
5 what the latest information might be.
6 So I think it would be extremely difficult to be
7 a single person, coping both with the information that
8 is difficult enough to hear, and simply to be always
9 available, ready to accept whatever new information may
10 be produced by the change in circumstances.
11 Q. Karen, you had something of this experience, did you
12 not, because you were on your own quite a lot of the
13 time, because of necessity, of keeping the family income
14 going. Do you agree with what Richard said?
15 MS WELBY: Yes. Appointments my husband did attend,
16 I cannot remember any specifics, but I remember on the
17 train to go home thinking he was at a completely
18 different appointment to what I had been at. He had
19 a completely different view than I had.
20 Q. I think the second point Richard was making as well was
21 the sharing of some of the burden of what is a difficult
22 time. There was a particularly difficult time for you,
23 as I understand your statement, between the first
24 operation that Jade had and the second. Was that
25 because you felt there was a delay and there was not
0066
1 someone to share it with there and then, or what?
2 A. They told me that Jade would probably only last six
3 months and then she would need further surgery, and
4 there was a delay in the next operation coming up.
5 I do not quite understand what the question is.
6 Q. It put some stress on you, did it not?
7 A. Yes, definitely.
8 Q. What support did you have in dealing with that?
9 A. From the hospital? None.
10 MR LANGSTAFF: What do you say about hearing different
11 things, the two of you, at conversations?
12 MRS EASTWOOD: Ours was slightly different. We tended
13 to have more of a conference with whoever was talking to
14 us. It would be a joint conversation, and then we would
15 sit down afterwards and discuss it, but really, we
16 pretty much got the same information out as each other,
17 but probably because we were discussing it together at
18 the same time as well, if you know what I mean.
19 I was there a lot of the time on my own, when Mark
20 had gone back to work in the January, which I did
21 actually find quite difficult, absorbing all the
22 information for myself, but if I ever did come across
23 a situation I did not understand, Mark would usually be
24 coming back at the weekend and the doctors or nurses or
25 whoever needed to talk to us would sit us down again and
0067
1 go through the same conversation, so Mark could actually
2 join in the conversation he had missed.
3 MR LANGSTAFF: Would it help, Sheila, do you think, if the
4 pre-operative conversations and estimates of risk and
5 descriptions were more in writing than they were, or do
6 you think this would be putting an undue burden on the
7 surgeon or the cardiologist?
8 MRS FORSYTHE: I think it would definitely help, because so
9 many people take so many different things away with
10 them. I know from our point of view, again, we had
11 taken different views of what had been said. It is
12 quite clear that those parents who were supported, who
13 had a piece of paper with a diagram, seem to have been
14 able to understand more.
15 The Downs Heart Group did actually do a set of
16 topic sheets and a video to explain the workings of the
17 heart so parents had more of an understanding, and would
18 be able to ask more specific questions.
19 Q. When was that?
20 A. When did we produce that? It was about three years ago.
21 Q. So it was felt that three years ago, there was a need
22 for this?
23 A. There had always been a need. The background was that
24 our Chairman pushed for this because of his child, who
25 would I think be about 11 now. He did not understand
0068
1 the workings of the heart, so therefore, being told
2 about the problems in the heart, it was very difficult
3 for him. We had tried to get funding together to
4 produce this video and topic sheets, and in fact now we
5 found that families were much more au fait with
6 congenital defects.
7 MR LANGSTAFF: Justine, you would have come across
8 a considerable number of parents whose children passed
9 through intensive care while you were there, some of
10 whose children would have had cardiac surgery.
11 MRS EASTWOOD: Yes.
12 Q. Did it seem to you that they had, as best you could
13 judge, sufficient information, or were they a little bit
14 bemused and confused about what was happening?
15 A. I think everybody initially is bemused and confused by
16 it all. My experience is, there were many books
17 around. There were plenty of people to try to explain
18 things to you if you did not understand it, but again,
19 from what I saw, if you did not understand it, people
20 came back and told you again and again, until you
21 perhaps did understand. You were not left with one
22 conversation and then they walk away and let you get on
23 and hopefully muddle it through. It was not like that.
24 Q. So do you think from those observations it would be
25 useful to have something on paper following from the
0069
1 initial pre-operative discussions?
2 A. I do. Any information extra to what you have been told,
3 if there is anywhere where parents can go to read up, to
4 watch videos, anything. At that particular point, where
5 you have been told your child has something wrong with
6 them, you just want to absorb as much information as you
7 possibly can, from any source, really. So, yes, I think
8 it would be imperative.
9 THE CHAIRMAN: May I just come in and say, did you have
10 experience of both videos and reading material, because
11 it strikes me that there are certain disadvantages of
12 reading material, namely, one has to have a good reading
13 command of English?
14 A. If my memory serves me correctly, I vaguely remember
15 there was actually a little booklet that had been made
16 by parents and professionals for parents, and I believe
17 it was something like that that we actually first read.
18 So it was very basic, but it just gave us some sort of
19 insight into heart problems.
20 Q. I understand that, but I remember hearing evidence at
21 the outset of this Inquiry from one parent who was to
22 a degree disenfranchised from taking part in matters
23 because she could not read.
24 A. Right. Then videos would definitely be more --
25 Q. I think, if I may say so, I was just exploring with you
0070
1 how beneficial a video was and could you get what you
2 needed from it?
3 A. I think you could, but there was no video. I did not
4 see a video. But yes, I think it would be under those
5 circumstances extremely beneficial.
6 Q. One can now think in terms of interactive IT, because
7 paper is almost of a different generation.
8 A. That is correct.
9 MR LANGSTAFF: One might take the point a little further,
10 that in order to be prepared for your child going on to
11 the ITU, it was, we have been told, the practice for
12 Helen Vegoda or Helen Stratton, at the times that they
13 were working in the Trust, to take a parent in and show
14 them the ICU so they could see and be prepared for the
15 shock that might be before them at that stage.
16 If you had a video, do you think it would be
17 better than seeing the real thing or not?
18 MRS CUMMINGS: I do actually have a recollection of
19 a video around 1988 -- I think it was a prototype.
20 I cannot remember the specifics, but I think the aim of
21 it as well was to send out to people who perhaps were
22 unable to visit the hospital before their child was
23 admitted. I have vague memories of that.
24 Q. We do have evidence of that being sent out.
25 MRS FORSYTHE: Can I come in, Mr Langstaff? There was, and
0071
1 it was really done by the Heart Circle to introduce the
2 cardiologists and surgeons and introduce parents who
3 lived a long way away to the BRI, I think initially.
4 I think there was one done perhaps later on at the
5 Children's Hospital. But definitely, there was one and
6 it was sort of "meet the hospital staff".
7 Q. But you were, I think, Richard, shaking your head when
8 the suggestion was made that videos might supplant the
9 visit?
10 MR LUNNISS: Yes. It is not necessarily that the video
11 itself is bad, it is simply that the experience of
12 looking at the video cannot really prepare you for that
13 of stepping into a three-dimensional environment where
14 you can feel what is going on in an ITU unit. It is
15 a new dimension. There is nothing to prepare you for
16 it, unless you face it.
17 MR LANGSTAFF: Returning for the moment to the question of
18 the way in which you felt you were kept informed, which
19 is really part of the topic that we are on at the
20 moment, you felt, Justine, I think, that you were kept
21 very well informed?
22 MRS EASTWOOD: Very much, yes.
23 MR LANGSTAFF: But you, Karen, felt that you were not kept
24 informed as well as you might have been?
25 MS WELBY: Not in the beginning, I do not think, no, but
0072
1 I found it very difficult to understand everything that
2 was going on anyway. I was only young myself and I was
3 in such a state of shock that for anything to penetrate
4 would ...
5 Q. How old were you?
6 A. I was 20.
7 Q. And how long did you spend on the first occasion that
8 Jade went into hospital?
9 A. Five weeks.
10 Q. During that five weeks, did you feel that you were not
11 quite understanding what had hit you?
12 A. Probably after her operation I started to get a better
13 understanding of what was going on. I remember that she
14 was shaking and in quite a state before her operation,
15 and nobody seemed to be telling me the truth about what
16 was happening then. They were making excuses of her
17 being upset because she had had x-rays done. When
18 I went back later, she was still that way and I thought
19 "This is not right. Nobody is telling me quite what is
20 going on here". I did actually demand to see a doctor,
21 to have that explained to me. They explained that the
22 drug they had her on to keep the valve open, they were
23 not quite sure of the amount they were giving her, they
24 thought might be upsetting her, but they thought if they
25 reduced it again, her valve might shut off.
0073
1 Q. So you felt you were being fobbed off by information
2 intended to be comforting, but as a parent, in fact, you
3 understood better?
4 A. Yes.
5 MR LANGSTAFF: Did anything like that occur with you,
6 Sheila?
7 MRS FORSYTHE: I asked the questions and I found that
8 everybody answered them to the depth that in fact I was
9 asking the question to. If the staff could not actually
10 answer the question because they had not the time to
11 explain it, they would actually come back and answer the
12 question to my level of understanding later, and I used
13 to tell parents, when they came in to the BRI, that they
14 must ask the questions and keep asking the questions
15 until they were satisfied to the level of information
16 that they required. There was never any problem so far
17 as we were concerned.
18 MR LANGSTAFF: I think you had a chance, Justine, to compare
19 the approach of different clinicians.
20 MRS EASTWOOD: Yes.
21 Q. You mention in your statement the way that you found
22 Mr Moore, Dr Mather, for instance, to be compared to the
23 way that Mr Dhasmana was?
24 A. Right.
25 Q. What made the difference?
0074
1 A. It is difficult to tell. I mean, I had got to know
2 Mr Dhasmana over a long period of time. I knew that
3 I understood the way he spoke and things he was saying.
4 Mr Moore and Dr Mather, perhaps it is because
5 I did not know them so well, I do not know. They
6 perhaps used more technical terms with me. I did have
7 a particularly difficult conversation with them, which
8 I think is what we are talking about.
9 Perhaps they were not quite so approachable.
10 Maybe that is the word I am looking for. Maybe I did
11 not feel confident enough to ask the right questions
12 with them, whereas I always felt very confident asking
13 Mr Dhasmana.
14 Q. There were occasions, were there, when some staff
15 appeared to show a lack of sensitivity in their
16 relationships with you? There was one doctor who made
17 a comment that you took exception to, asking if Oliver
18 was Down's syndrome?
19 A. Yes. We were actually in the ward for a very short
20 period of time. Dr Hayes had actually asked the
21 therapist to speak to me, because Oliver was unable to
22 suck, because we were trying to introduce the bottle to
23 him. She felt a speech therapist would be useful. It
24 was actually the speech therapist who made this comment,
25 because she had been given a few notes on Oliver, and
0075
1 I believe it was a Junior Registrar who had actually
2 told her that Oliver was a Down's syndrome child, so she
3 did say to me, "When did you realise that Oliver was
4 a Down's child?" and I said "Just now". It was a little
5 bit of a shock. So it was a mistake by somebody which,
6 you know --
7 Q. It was upsetting?
8 A. Very upsetting. I do have to say, he did come and
9 apologise profusely later in the evening, but very
10 upsetting, yes.
11 Q. From what you are describing, the communication skills
12 varied from doctor to doctor?
13 A. Exactly, yes. We dealt with so many people, this is the
14 trouble. I would not say there was probably one person
15 in that hospital who did not know Oliver or his case, so
16 we were dealing with an awful lot of people down the
17 line, really.
18 Q. You make the point in your statement of the honesty of
19 Mr Dhasmana in the sense that he refused to exaggerate
20 the chances of Oliver's survival.
21 A. Right.
22 Q. Did you find that unsettling, or helpful, or helpful
23 only in retrospect, or what?
24 A. We just felt he was being honest. He was not putting us
25 under any false illusions. We knew that Oliver was
0076
1 extremely unique with his problems, he had heart
2 problems and also problems with his trachea, and
3 unfortunately -- I mean, there was hope, but nobody
4 ever, particularly Mr Dhasmana, never built our hopes
5 up, which is how we wanted it. There was no getting
6 away from the fact that we were dealing with a very
7 difficult situation.
8 Q. We have heard Mr Dhasmana described to us as "brusque"
9 or "abrupt" at telling someone bad news. From your
10 dealings with him over some time, do you think he might
11 be perceived in that way?
12 A. Might be. In the very first pages of my diary, I did
13 actually write he came across as a negative man. Maybe
14 that could be looked at as brusque. I would not say so,
15 though. It was perhaps his manner. I never thought of
16 him in that way. Everyone comes across in a different
17 way. We had the opportunity to get to know him over
18 a year, and I certainly would not put him down as
19 a brusque uncaring man.
20 Q. What made him seem negative?
21 A. Because he never built our hopes up. If anything, he
22 went the other way. I would say he was just honest. He
23 did not build our hopes up, perhaps, in the way we
24 wanted him to, because things were looking so grim, but
25 he was just that way.
0077
1 MR LANGSTAFF: In talking about Mr Wisheart, Karen, you
2 described him in your initial conversations with him as
3 thinking he was "cruel".
4 MS WELBY: Yes.
5 Q. Why?
6 A. Because I was very, very upset, taking Jade off to
7 theatre and I wanted to have -- I wanted to think she
8 was going to come out and everything was going to be
9 fine, but he was not going to let me believe that for
10 one minute. He wanted me to understand she was possibly
11 going to die on the operating table. I did not want to
12 accept it, so I thought he was very cruel to tell
13 somebody who was almost hysterical that their daughter
14 was probably going to die.
15 Obviously later on I realised that that is what he
16 should have said to me, that is what I needed to know;
17 I did not need to be given any false hope, and
18 I appreciated that from then on, that he was very, very
19 honest and that whenever he said to me that things were
20 looking good, then I could breathe a sigh of relief, and
21 think "Mr Wisheart says she is going to be okay".
22 MR LANGSTAFF: Is there a scope, do you think -- this
23 invites the comments of any of you -- for a degree of
24 reassurance, or do you think the policy from all your
25 different perspectives ought to be frank honesty, even
0078
1 if it may seem brutal and cruel at the time?
2 MRS CUMMINGS: I think one of the things I feel is that it
3 can be difficult if, as a parent, you obviously do not
4 go into hospital wishing your child to die. You go into
5 hospital because part of you feels that this is the
6 right place to be and these people will help to make
7 your child well, so that you can bring them home. With
8 that, I think, goes an unrealistic expectation of what
9 you think other people can do for your child, and that
10 can be difficult, then, when you are actually taking on
11 the information that is being given to you, because you
12 can be selective, and you do not want to hear certain
13 views. Mr Wisheart was extremely honest with us. He
14 went into every risk factor, every possible thing that
15 he, at the time, felt may go wrong or would go right.
16 There were no angles that we had not covered. But there
17 was still that element that I felt, "Yes, but I want to
18 take her home, so, you know, you have to do it right, so
19 what if this happens, what will you do if you cannot do
20 that?" I did go into those questions with him and that
21 can be very difficult, because how much information in
22 that state can I actually credibly take on board and how
23 much does that clinician -- do they know how much to
24 give me? And when you have reached saturation point, it
25 is just going over your head. I think that is a very
0079
1 real problem. I do not know how the others felt.
2 THE CHAIRMAN: You may want to comment on a somewhat
3 contrary view taken by Dr Joffe, that in his view it was
4 always appropriate to leave parents with hope? That
5 seems to cut against what you are currently saying.
6 MRS EASTWOOD: I certainly would not agree with that
7 comment, I must admit. I think you need to know. It
8 hurts. You do not want to be told your child is
9 possibly not going to survive the operation, you want
10 the surgeon to say "Everything is going to be fine, I am
11 going to pull the child through". It hurts to hear it,
12 but you need to know the truth. I do not want to be
13 told everything is going to be jolly and fine. It is
14 a fact of life.
15 Q. Are you just talking about surgeons or are you talking
16 about all those involved in the care?
17 A. Everybody. You do not want people to be cruel to you,
18 but you need honesty in a situation like that. You just
19 have to deal with it. You are in a situation that you
20 cannot get out of; you have to deal with it.
21 MRS CUMMINGS: I think the difficulty as well is that it
22 has to be recognised that there are some people, and
23 perhaps all of us at different times, during the time
24 our children were in hospital, you reach the point where
25 you actually cannot take the news that you are being
0080
1 given. You physically and mentally cannot take any more
2 and you shut off. That is a problem, because that,
3 then, opens the opportunity for later down the road to
4 actually come back and say, "Actually, I was not told
5 that", when in fact you were told it; it was just that
6 you have mentally, for preservation purposes, shut off.
7 I think that is a very real problem.
8 MR LANGSTAFF: Is there, perhaps, a risk that in
9 a hospital, which after all is thought of as being
10 a place which will cure, as best it can, illness and
11 disease, might seem to be unduly depressing if it starts
12 off by telling a parent, "Well, we have not really got
13 very much hope", almost defeatist. You have
14 a perspective on this, I think, Richard?
15 MR LUNNISS: I must say that my initial impression of
16 Bristol, as Justine's was, was coming to a place where
17 people knew what could be done, and that, in a way, is
18 the cushion, and you trust. As I was saying, you cannot
19 trust people if you do not think they are being honest,
20 even if they are being nice. Once you think that they
21 might not say the thing as it is, then you can never
22 believe quite -- there is no working relationship from
23 that point on.
24 So there is a moment -- in my statement -- when
25 William was very ill, and there had been two weeks or
0081
1 more when it was not always clear what was wrong with
2 him, except that he was ill and not getting better.
3 Then it was identified that he had an infection on the
4 patch. Mr Wisheart said to me one evening -- my wife
5 was away looking after our daughter at the time, "I am
6 afraid I might have to do it again", or words to that
7 effect. I said to him, "Well, have you done that
8 before?" He said "No", he had read about it, and what
9 else can you do but trust the man? He is trusting you
10 with his honesty and what else can you do, apart from
11 move from there?
12 Q. You, obviously, had to deal with very difficult
13 information. The one thing you have all been stressing,
14 when Michelle was talking a little while ago, the last
15 long answer that she gave, both you, Justine, and you
16 Sheila were nodding vigorously -- I say that so that
17 gets noted on the transcript -- but there is
18 a difference, perhaps, is there, between being given
19 depressing information of its own nature and having the
20 underlying confidence that you are speaking of in that
21 the doctors are doing their best?
22 What gives you, do you think, that feeling? That
23 is the faith that you had, is it not?
24 MR LUNNISS: Partly it is love for one's child, I think.
25 Everything around you becomes an extension of the child,
0082
1 the child's life and the means of the child's
2 preservation. It is impossible to believe that one
3 could be with a child in a place where there is any
4 sense of not caring for the child, so it stems initially
5 I think from one's relationship with the child and with
6 the child's mother and vice versa. Thereafter, the
7 honesty, the directness, of the surgeon and all the
8 other medical people involved, but I think ultimately
9 the surgeon, because he is the man who has the knife,
10 and obviously there is a lot of teamwork, but you cannot
11 help but think, "Well, he in the end has to make the
12 decision", and you trust him.
13 There is a feeling that focuses on Mr Wisheart, in
14 our case. At no point did I ever have any qualms or
15 hesitations or qualifications about that feeling.
16 I cannot analyse it beyond saying that it existed, and
17 it developed, and there is nothing that has happened to
18 make me perhaps move back to a point where I could see
19 where it all started. I do not want to move back. It
20 is there.
21 MR LANGSTAFF: Can I shift the focus a little from what we
22 have been discussing, the information, the pre-operative
23 phase, the confidence that one does or does not have in
24 the team, to the post-operative?
25 Here, really, two matters: the question of the
0083
1 nursing care, the ITU, and your reactions to the split
2 site in Bristol.
3 How do you, Justine, compare Ward 5 with the BCH?
4 MRS EASTWOOD: Looking back, initially we had been at
5 the Children's Hospital for two weeks, while Oliver had
6 tests, so we had begun to feel a little bit more
7 comfortable there; it felt like home and we felt secure
8 as we knew people. Moving down to Ward 5 was very
9 difficult. Perhaps we did not realise this at the time,
10 but looking back, it was extremely difficult.
11 Saying that, though, we had no problems in
12 Ward 5. I did not like the split site and I certainly
13 did not like the fact that adults were in with children,
14 I did find that very distressing personally, but as for
15 care down there, it was second to none. The nurses were
16 fantastic with Oliver, they were fantastic with us.
17 Q. You, I think, would comment that there may have been
18 insufficient staff at the Children's Hospital in the
19 ITU?
20 A. Later on, yes. Initially, when we went back to the
21 Children's Hospital, Oliver was extremely poorly, so it
22 was a one-to-one. Because we were there for such a long
23 time, as time went by, Oliver was a very volatile child,
24 but at times he was not classed perhaps as critical as
25 the other children or babies that were in the intensive
0084
1 care, so we found ourselves in a situation where
2 Oliver's nurses -- because he had a team of nurses --
3 they were gradually being introduced to another baby to
4 look after, and we would, on some occasions, end up with
5 perhaps the Sister in charge of the ward actually
6 keeping an eye on us. Because I was so competent at
7 Oliver's care, I was perhaps relied on a little bit too
8 much.
9 Q. Why too much? Why should a parent not take a full part
10 in the child's care?
11 A. Oliver's care was extremely unique, I suppose. It was
12 a full-time care. He was in an intensive care
13 environment, which perhaps was a little bit of a strain
14 on me. You could not really leave his bedside. This
15 perhaps was my problem. I was perhaps relied on
16 a little bit too much. I could not really even just pop
17 out. Because I was looking after Oliver, he had maybe
18 a Sister looking after him. They had other jobs to get
19 on with, so I was left more to get on with it.
20 Q. So you made up for nurse-power deficiencies?
21 A. It was a picture of full care in the intensive care, it
22 was periods when Oliver was not quite so critical. He
23 needed to be in intensive care because he needed to be
24 on a ventilator, but he was not needing perhaps
25 a one-to-one all the time.
0085
1 Q. And you had bank nurses from time to time?
2 A. We had bank nurses as well, because Oliver was not one
3 of the poorliest children in intensive care at times.
4 If we were short-staffed there would be bank nurses and
5 Oliver would, 9 times out of 10, get the bank nurse.
6 Q. How did the bank nurse compare with the regular nurse?
7 A. Again, because Oliver's problems were so unique, he had
8 had reconstructive surgery on the whole of his trachea,
9 so you had to be very careful with it. You had to know
10 him very well. His team of nurses knew him as well as
11 I did. We had to do suction on his trachea, which meant
12 putting a catheter down the tube, so you had to be very
13 careful not to damage the trachea, basically. I did
14 find at times certain bank nurses, because they did not
15 know Oliver, they treated him like a normal tracheotomy
16 child, which he was not, and I did find that quite
17 frustrating.
18 Q. Despite your telling them?
19 A. Oh, yes, I told them!
20 MR LANGSTAFF: Sheila, what was your reaction to the
21 different units?
22 MRS FORSYTHE: Parents found it very difficult because they
23 came in mostly for catheterisation a few months before
24 they had the surgery, and obviously Helen Vegoda, I have
25 to say, I have to explain that Helen Vegoda used to try,
0086
1 if it was possible, to get the Down's parents to meet
2 me, so that I could try and answer any of the questions
3 that would help them to smooth the path and into another
4 hospital. I think they found it very, very difficult,
5 because they had come in and got used to the staff in
6 one hospital, albeit fleetingly, and then suddenly they
7 were going somewhere totally different and for very
8 major surgery.
9 So there was a lot of questions just on the
10 practicalities.
11 Q. And they then obviously found it disturbing and
12 distressing to have the change?
13 A. Yes.
14 Q. And the change of staff that that would imply?
15 A. That is right. It was like two different sets of
16 staff.
17 MR LANGSTAFF: What did you think about the mixture of
18 children and adults on the Intensive Care Unit in
19 Ward 5?
20 MRS CUMMINGS: I do not think I paid a lot of attention
21 at the time. I do not think it was an ideal situation,
22 but I do not think the staff thought it was either; it
23 was just the way things were. We were in Ward 5 before
24 the new ward, the new intensive care opened.
25 The point I wanted to make, that Justine was
0087
1 saying earlier, I think sometimes it can be quite
2 helpful for parents to help. When you have the
3 operation and it is short-term -- I appreciate yours was
4 over a very long period of time, but for me personally,
5 I found it a great help to feel I was included in
6 Charlotte's care, that I was able to do basic things
7 like wash out her mouth and wash her down, not do huge
8 amounts, but it made me feel included. I think that is
9 quite a help for parents.
10 MR LANGSTAFF: Sticking with Ward 5 and how you reacted to
11 that, rather than the care at the Children's Hospital
12 you, Richard, did not mind that there was a mixture of
13 adults and --
14 MR LUNNISS: No. I think, it would be quite wrong to say
15 I was quite glad it was not just children, not from any
16 medical point of view at all, but simply speaking for
17 myself. My wife then may have felt very differently.
18 William was on the whole unaware of anything except, if
19 he was awake, his parents and the video. He was very
20 interested in what was going on once he became awake.
21 I think one probably should not under-estimate the
22 capacity of children to accept what is going on around
23 them.
24 For myself, it was, as I said -- it was Christmas
25 Eve, the first time that William was operated on down at
0088
1 the Children's Hospital, and it was almost unbearable to
2 be in this atmosphere and probably why, later on, I felt
3 happier with the mixed ward was the impossibility of
4 trying to balance this aspiration towards a happy time
5 when ultimately William -- obviously he lived in that
6 operation, but the suffering going on, at the same time
7 to try and maintain "the holly and the ivy" was very
8 difficult.
9 Later on, I found that, in a way, a mixed ward is
10 a more natural environment to be living in. You can be
11 adult with adults around, whereas if it was -- perhaps
12 a bit more difficult for a man, I do not know, but I was
13 glad that there were elder people there, because
14 sometimes the feelings are very hard.
15 MR LANGSTAFF: Can I do a quick round-robin, as it were?
16 You said you were happy with that, for the reasons you
17 have given.
18 Justine, obviously you did not like it at all.
19 Would you have preferred all children, Karen, or not?
20 MS WELBY: Looking back, yes, it would have been better
21 if it is all children, but it is not something that
22 bothered me too much at the time.
23 MR LANGSTAFF: Michelle?
24 MRS CUMMINGS: I think looking back, probably like
25 Karen says, it would have been nicer to have had all
0089
1 children together, but at the time it was not something
2 that I really thought about. It was the situation.
3 MRS FORSYTHE: We just accepted it. That is as it was.
4 THE CHAIRMAN: May I ask one question before you go
5 on? I think it was Mrs Forsythe, but she will tell me
6 if I am wrong. You spoke of the split site as requiring
7 you to have to get used to another set of staff. Tell
8 me about that. That must be very difficult. Or am
9 I making a mistake?
10 MRS FORSYTHE: Yes. I actually was not an inpatient;
11 Andrew was transferred from his local hospital to have
12 his catheter and he was transferred back, so really, we
13 did not have experience initially as inpatients for his
14 catheter test, so we were in many ways lucky in as much
15 as we were just going straight into the BRI. It is just
16 other parents that I have supported that have had the
17 experience of going to one hospital, getting used to the
18 systems there, and then going to a totally different
19 place.
20 MRS CUMMINGS: I think I could support that. I think if you
21 spend regular time with the children and you are used to
22 the way the Children's Hospital operated and you got
23 used to the nurses and what times they were coming on,
24 generally it was on a first name basis and they were
25 regular. Apart from their shift change, you knew who
0090
1 was going to be coming on, whereas at the BRI you
2 never -- we did not, at any rate -- you never generally
3 have the same staff on all the time. You would have
4 bank nurses coming on.
5 So there were a lot of changes all the time. It
6 was difficult to get the same kinds of relationships,
7 and also generally because you would not be there,
8 hopefully, for that length of time to build those
9 relationships with those nurses.
10 THE CHAIRMAN: It is just that the sense of security
11 and trust which Mr Langstaff is referring to would
12 presumably have to be started all over again?
13 MRS CUMMINGS: That is right.
14 Q. And from a context, perhaps, of these are different
15 people?
16 A. I think that is true. I think you do put your trust in
17 people that you have been able to build the relationship
18 with, and it is difficult, especially at times when it
19 is so traumatic.
20 MR LANGSTAFF: Can I jump ahead, really conscious of
21 the fact that you, Michelle, have to leave us around
22 12.30 because you have an exam in, of all things, health
23 care, this afternoon?
24 MRS CUMMINGS: Yes.
25 Q. That is part of the studies you told us you were doing
0091
1 when you were here earlier. There are two particular
2 points you want to link to the Inquiry in respect of,
3 first of all, informed consent?
4 A. Yes, it is just an observation, really, based on partly
5 my own experience and listening over the months to
6 people who have spoken.
7 I just have a concern, I suppose, of what actually
8 informed consent is and how do you sort of measure
9 that? How do we, as parents, know exactly what our
10 rights are in terms of informed consent? If you asked
11 me, I feel that I was fully informed and I have no
12 illusions of what I was told. I am quite, you know,
13 firm on that. But if you asked another person who
14 I feel perhaps was given the same information, their
15 opinion and their analysis of what they were told was
16 completely different.
17 So I wondered whether part of the Inquiry would be
18 to look at ways of perhaps providing guidelines for
19 parents so that we actually know when we are going into
20 hospital, before we go into hospital, exactly what we
21 can expect, what our rights are, and exactly what
22 informed consent is for us, what it means to us so that
23 there can be no misunderstandings.
24 It is quite a huge area, I appreciate, but that
25 was the first thing.
0092
1 Q. What you are suggesting there is not giving the
2 guidelines so much to the clinicians as to what they
3 should tell and how they should tell a parent, but
4 giving a written standard which the parents can expect?
5 A. A I think it has to be for clinicians as well. It is no
6 good telling the parents one thing if the clinicians do
7 not know. It has to be something that everybody knows
8 what the other person's role is. So otherwise, it will
9 not work. But if the clinicians are in a position where
10 they are uncertain what their position is regarding
11 informed consent and they feel in good faith that they
12 have acted and given the information over, but the
13 parents' interpretation does not agree with that, then
14 you have a problem.
15 So if you have guidelines, perhaps, that both the
16 parents and clinicians understand, perhaps it will help
17 towards clarifying it.
18 That was my first point on that.
19 THE CHAIRMAN: Would it help just to give you the
20 reassurance that, for example, in the seminars which are
21 coming up, in at least two of those seminars, issues
22 around communication will be certainly featured very
23 strongly?
24 MRS CUMMINGS: Yes, thank you.
25 MR LANGSTAFF: The second area that you wanted to make
0093
1 sure was addressed whilst you were here was relating to
2 the postmortem.
3 MRS CUMMINGS: Yes. It was again another idea of
4 listening to people talk and our own experience. First
5 of all, I would just like to reinforce that from our
6 perspective, we were treated with the utmost sensitivity
7 and we had tremendous support from the medical staff at
8 the Children's Hospital and Mr Wisheart and Dr Jordan
9 were absolutely wonderful, as were the nursing staff.
10 The point I think I wanted to make was regarding
11 the consent forms, both for -- really I think perhaps
12 this could be applied for operations and catheters. If
13 you have to sign, would an idea be to have it like
14 a carbon so the parent gets a carbon, a copy goes in the
15 notes -- I know it sounds silly, but if it is in
16 triplicate and everybody has a copy, it would be less
17 likely for misunderstandings later on, and with three
18 copies, if one does get lost, you still have two others,
19 and also the parent can walk away and at a later date,
20 when they feel ready, they can go back to it and read it
21 and see. If there are any things they wish to discuss,
22 they can then go back and talk to the hospital.
23 THE CHAIRMAN: Again, Mr Langstaff, what I have already
24 said about communication, that is precisely the matter.
25 And the idea of communication being a process, not
0094
1 merely concern, with one event of signing the thing, is
2 the sort of things that are clearly uppermost in our
3 minds.
4 MR LANGSTAFF: In terms of the clarity of the form
5 itself, do you have any suggestions to make?
6 MRS CUMMINGS: My own recollection of the form we
7 signed was --
8 Q. Can we just have a look at a form? There have been
9 a number shown to us. It is probably helpful to do this
10 by reference to an example. If we pick up WIT 204/41
11 this is not an operation consent, it is a postmortem
12 consent, because I think perhaps it is part of what you
13 want to address?
14 A. Yes, that looks familiar. Is that similar to the one we
15 signed?
16 Q. I think it is, but there were a number of different
17 forms, and really, the points you make are general
18 points, I think, rather than in respect of Charlotte.
19 What do you want to say about the question of postmortem
20 consent?
21 A. I think everybody appreciates that it is an extremely
22 traumatic time when your child dies. I know I am
23 speaking generally, but I can only speak from my own
24 experience. We felt that we were fully supported.
25 I can fully appreciate that others did not.
0095
1 I think the point I was trying to make was the
2 point I made earlier with consent forms. Perhaps if
3 they were more clearly laid -- I think that is actually
4 quite clearly laid out. I cannot remember when I last
5 saw one, but maybe if it was more specific so there
6 could be no actual misunderstanding, when you are
7 traumatised I think everything needs to be very clear,
8 and perhaps very structured and laid out, so you can
9 actually see exactly what you are signing.
10 We for ourselves were not left on our own with the
11 consent form; we had people with us who went through it
12 with us and who assisted us in filling it out. I do not
13 know if others find that that was not their experience,
14 but we certainly did. I think there does need to be
15 more understanding of the trauma.
16 I have forgotten what I was going to say, if you
17 could help me?
18 Q. Let me give you a bit of help, perhaps. What you are
19 looking at is a hospital postmortem consent form, and of
20 course, as we know, there are two different types of
21 postmortem, the hospital postmortem and the Coroner's
22 postmortem.
23 A. Yes.
24 Q. The Coroner's postmortem almost, by definition, does not
25 necessarily involve a form, because the parent has, as
0096
1 the law stands, no choice; it is the Coroner's
2 decision.
3 Are you suggesting that, nonetheless, it might be
4 helpful for a parent to have a form, even if what it
5 says was, "I have had it explained to me that the
6 Coroner requires a postmortem. I understand it will
7 involve A, B and C and it may involve D, E and F"
8 whatever there may be?
9 A. Yes, thank you very much. I really do. I really think
10 there should be no difference: I think the parents
11 should have a form whether it is a hospital postmortem
12 or a Coroner's postmortem.
13 I think it is very difficult to judge what
14 happened 10 to 12 years ago by today's standards, but
15 certainly public opinion has changed and I think most
16 people would recognise that you have to move forward.
17 I think that would be, again, going some way to
18 alleviating parents' distress at a later date, that they
19 can know they can sit there and have this form in front
20 of them and see what they have signed.
21 MR LANGSTAFF: Michelle, you should feel free to go. Thank
22 you very much for your contribution.
23 THE CHAIRMAN: Thank you.
24 MRS CUMMINGS: Thank you.
25 MR LANGSTAFF: As you are going, I shall turn away from
0097
1 you, no disrespect, and ask Justine: you, alone of the
2 others, have a particular perspective on this, because
3 of Oliver's death.
4 You have described what happened afterwards as
5 "disgraceful".
6 MRS EASTWOOD: Yes. Oliver had -- I discovered this
7 morning -- a Coroner's postmortem. I could not remember
8 much about that day, to be quite honest. We had been
9 discussing it and I said I could not remember signing
10 anything, but the reason we did not sign anything was
11 because it was a Coroner's postmortem. This is exactly
12 what Michelle was saying, if we had a form of something
13 we could take away and at a later date looked at after
14 we had got over the initial shock and sat down and
15 understand what a Coroner's postmortem means.
16 My husband and I were in the States for three
17 years, so we were keeping tally on this Inquiry via the
18 Internet and it was via the media on the Internet that
19 we discovered the retention of organs, so we spent about
20 a three-week period trying to find out whether Oliver
21 was actually one of these children. We did not really
22 know who to speak to, or how to find out, but eventually
23 we did find out by Mr Barrington. A letter came through
24 the post, followed by another letter explaining what our
25 options would be now that we had discovered that Oliver
0098
1 was actually one of the children who had had organs
2 retained, or his heart.
3 Q. What did you think about the options?
4 A. The options we were given in the letter, I cannot really
5 describe it, really, they were just disgusting. It was
6 explained that they could incinerate our son's heart,
7 which is not even worth thinking about; the hospital
8 could bury our child's heart in a local cemetery, close
9 to the hospital, not to us. My husband pointed out
10 later he did not want our child's body "scattered across
11 the country". Thirdly, we could pick up the heart and
12 go through the burial ourselves which is obviously the
13 option that we chose.
14 Q. What effect did the realisation that his heart was kept
15 have on you?
16 A. Shock. I cannot really explain what we felt. This is
17 five years down the road. We had been still trying to
18 come to terms with the death of Oliver. I think we were
19 finally coming to terms with it, and then this all came
20 out and we are basically back to square 1. We actually
21 buried Oliver's heart on Monday, and it was literally
22 like going through the funeral again.
23 Q. Was it helpful to do that?
24 A. It was painful but it was helpful. I am glad we did
25 it. I am glad we saw it through ourselves, picked up
0099
1 the heart ourselves, our local Vicar performed a service
2 at Oliver's graveside. It was very painful but it will
3 help. It will help us finally to lay Oliver to rest.
4 Q. You have sought an explanation as to why this should
5 have happened from a number of people, have you?
6 A. When we picked up Oliver's heart in November, we spoke
7 to Mr Barrington. We had the option of just signing the
8 form to say that we had received the heart, which I and
9 my husband were not happy to sign, we needed a little
10 more explanation than that. We wanted someone to
11 explain to us why it had happened, how it could have
12 happened, so the pathologist -- not the pathologist who
13 performed the postmortem, but the other pathologist came
14 and tried to explain to us as best he could how or why
15 it could happen. I can perhaps understand at the end of
16 the day it was his job, he felt it was the best thing
17 not telling the parents, why put them through more pain,
18 but I do not agree, I am afraid. We had every right to
19 know they were taking our child's heart away from us.
20 Q. You say, WIT 22/16, the bottom of the page, the bottom
21 of paragraph 48, that you feel the system let Oliver
22 down and it is something you could never come to terms
23 with?
24 A. We felt the hospital did everything they could for
25 Oliver and for us. We still had respect for everybody
0100
1 we dealt with in Bristol. It is just when this
2 happened, after everything that had been done for
3 Oliver, we feel after the final hurdle he was let down.
4 We feel we let him down as well. I think it was out of
5 our hands, but as a parent you feel you have not
6 protected your child somehow, because this happened,
7 this was possible, this child or his heart or, you know,
8 whatever other organs could possibly have been taken
9 from other children, was taken away. It just does not
10 seem right.
11 THE CHAIRMAN: I think that last observation of yours
12 is particularly important: that you yourself in a sense
13 feel you have let --
14 A. You do. At the end of the day, you have to protect your
15 child in every form or fashion. You cannot help feel
16 that. You know it is not your fault, but you cannot
17 help feel that.
18 MR LANGSTAFF: We went out of our natural course
19 because Michelle had to leave us, but if we can come
20 back to the question of nursing care, and we were
21 addressing some of the aspects of post-operative care
22 through you, Justine, but Karen, did you find that there
23 were some children in the ICU that you felt were not
24 being regularly cared for, perhaps because of pressures
25 on the nursing staff?
0101
1 MS WELBY: Not in the ICU, in the ward. While Jade was in
2 for her second operation in 1984, a little boy who was
3 admitted whose mother could not cope at all, she
4 delivered into the hospital and then left a few hours
5 later and said she would be back after his surgery and
6 after his intensive care.
7 The nurses were very, very busy and they did not
8 have time to play with him, or feed him. Obviously they
9 would have made the time to feed him, but I took over
10 his care, as well as Jade's.
11 Q. And you were feeding him as well as Jade?
12 A. Yes.
13 Q. You described it as a bit like having twins?
14 A. Yes, he was a bit younger than Jade and I had two, both
15 in a high chair, feeding them both at the same time.
16 Q. What did you feel about that?
17 A. It made me realise that if ever I was ill and could not
18 be in hospital with Jade, I would make damn sure another
19 member of my family was.
20 MR LANGSTAFF: Was there a general help given by one parent
21 to another over time on the wards? The ICU? You may
22 both be able to comment on this, with different
23 perspectives.
24 MRS EASTWOOD: I would say more so in the wards than
25 the intensive care. I fall into that category, because
0102
1 there were times I did have to go home, just to refresh
2 my clothes or whatever, and Oliver was on his own and
3 I did actually have a rapport with the parents, certain
4 parents, who knew the times I was going home and they
5 would help me by keeping an eye on Oliver because he was
6 not having a one-to-one when he was on the ward. It was
7 a short period of time, but parents had this little
8 understanding, we all helped each other, really, because
9 you could not be there 24 hours a day.
10 MR LANGSTAFF: Sheila, you were nodding.
11 MRS FORSYTHE: Exactly. I used to make sure I was
12 there most of the day, but other parents would keep an
13 eye on Andrew and give him stimulation, or just company
14 when the nurses were just doing the basic nursing.
15 I think children in a children's hospital need to have
16 somebody of their own with them, just to be there.
17 There is nothing worse than lying on your own and
18 knowing there is nobody there to be around. When you
19 have your own standards of care for your child, you
20 assume that other parents have the same standard of
21 care, and if they are not there to do it for the child,
22 you naturally feel that you have to take over -- you
23 actually feel that you take over, provided the parent
24 has agreed.
25 Q. You are describing a natural support system amongst
0103
1 parents obviously whose children may be in the Intensive
2 Care Unit or the ward for a while. What about, from the
3 time they began, the Heart Circle involvement, and then
4 Helen Vegoda and Helen Stratton? How did you find that
5 they related?
6 A. To supporting parents?
7 Q. To supporting parents, and then perhaps you might like
8 to go on and tell us how you think they are related to
9 each other?
10 THE CHAIRMAN: Perhaps in doing so, we also ought to as
11 it were differentiate between staffing problems and
12 family-centred care, which is of course one of the aims
13 of modern nursing, as I understand it, with children, to
14 involve families. If you could separate out what you
15 thought was, as it were, because there were not enough
16 nurses to help and what it was that was facilitative for
17 you to be involved, that would be helpful.
18 MRS FORSYTHE: If I start as a parent, I had no support
19 whatsoever in 1986 when Andrew was in. Obviously we
20 were living fairly close to home, so therefore we could
21 return home at nights. So we felt quite comfortable
22 with what was happening.
23 Helen Vegoda, I cannot think how I met her.
24 I think I was introduced to her on the ward. She
25 obviously realised that as a parent, I could offer
0104
1 a parent-to-parent support that Helen was not able to
2 do. She was not able to understand the trauma and
3 anguish you go through when you have had major cardiac
4 surgery on your child. So I think Helen Vegoda
5 understood this, and in fact used myself, and also
6 Michelle, I believe, as well, to support parents, where
7 she was not quite able to do so.
8 I think, as a parent, if you can link with
9 somebody who has actually lived through the experience,
10 then I think it is a great comfort.
11 So I did not actually come across -- Helen Vegoda
12 did not actually support us as such. She started. She
13 was in the BRI for a small amount of time, and then very
14 quickly she became one of the staff at the Children's
15 Hospital. I do not know the politics because I was not
16 into hospital politics, but she did support and she did
17 actually link with parents who were coming in, I think
18 all parents who were bringing children into the hospital
19 for catheterisation. She then linked the Down's parents
20 to myself. So obviously, there was that layer of
21 support.
22 Then Helen Stratton came into the BRI and
23 obviously I linked, as a parent, to parent support with
24 Helen Stratton in the BRI. She was much more answering
25 nursing questions and I think the parents were probably
0105
1 asking a lot more nursing questions of her, but I found
2 them both very professional and I did not see, although
3 I could see where their areas did not meet, that I was
4 sort of in-between, as it were.
5 MR LANGSTAFF: Did you have a sense that Helen Vegoda was
6 not able to provide the service that was needed because
7 she did not have the nursing qualifications?
8 A. Yes. It would have been better if Helen Vegoda had had
9 some medical knowledge or nursing knowledge, yes, of
10 course it would have been, but on the other hand, some
11 families did need counselling at the time of their
12 diagnosis.
13 Q. Was there, to the converse, a difficulty on the
14 counselling side at all with Helen Stratton?
15 A. I saw Helen Stratton as being a nurse giving
16 information.
17 Q. So it was more information support than, as it were,
18 counselling support?
19 A. Yes.
20 Q. In the inevitable case of the parent who might not, for
21 whatever reason, relate as a person to one or the other,
22 was there any obvious alternative?
23 A. I suppose they asked the questions of the staff, if
24 there was any support needed. I do not know, is the
25 answer.
0106
1 Q. How good, generally, were the nurses at providing the
2 sort of moral support that the parents might want?
3 A. I think it depended on how long you were in the
4 situation. As time goes, you tend to relate more,
5 because you get to know the staff. People who had
6 literally just arrived did not get as much support as
7 those that had been there a long time and were very well
8 known in the unit.
9 Q. Even although, in one sense, the person who has just
10 arrived might need more support?
11 A. Yes, that is right.
12 Q. From an organisational point of view, looking at it from
13 the outside as you do, how might that, do you think, be
14 remedied?
15 A. It is very difficult, because the families do not always
16 present themselves. The ones who need the most support
17 do not always show it. The ones who make the loudest
18 noises and ask for the most input in fact sometimes do
19 not necessarily need a huge amount of support. So
20 I really do not know, obviously it would have to be
21 somebody who was very able to separate those needs.
22 MR LANGSTAFF: Is there anything that either of you would
23 like to add to what Sheila has said?
24 MS WELBY: I think it is very difficult for me to comment on
25 that, because when Jade was first born and I did not
0107
1 have any support, later on, when there was support, my
2 family had made sure that I was never on my own in
3 Bristol, and I always had another member of my family
4 with me and that was all the support I needed.
5 Q. So you had actually sorted out the problem for yourself?
6 A. Yes, or my family had.
7 MR LUNNISS: At the time, I think both Deb and I felt that
8 although we were doing okay -- we were very busy, as
9 I said; I was working and we had a child who was not yet
10 weaned until it came to the possibility of the second
11 operation; we were living with a friend and kept
12 ourselves busy -- we were obviously quite tense, but
13 there seemed no reason that we should behave other than
14 the way we did. No-one suggested "You should do this"
15 or "should not do that". It was very much perhaps
16 a reflection of perception of our ability to do it
17 together that we felt, although it is a curious image,
18 on the one hand you feel this child is part of this
19 larger unit which is supporting him, but then as
20 parents -- or as a couple not as parents, bobbing around
21 in this large ocean of technical knowledge and intense
22 emotion, which -- it is not always a storm, but it is
23 certainly a vast horizon. Retrospectively, I think once
24 we started going, you drift out in these big spaces and
25 there is no easy way to find a point back.
0108
1 I do not know how clear this seems. We were under
2 great stress, I suppose, because William's case was very
3 intensively deteriorating, and there was a period when
4 it was not clear what could be done.
5 Then I mentioned Mr Wisheart's suggestion, but
6 very much later, it was only very much later, two years
7 later, really, that the difficulty of the time became
8 apparent.
9 Q. I want to stop you there before you elaborate on that,
10 really from the general and the personal to the
11 particular individuals. We have had talk about Helen
12 Vegoda and Helen Stratton. You, I think, had experience
13 of Jean Pratten. What can you say about her skills and
14 how you compare her role with that of Helen Vegoda?
15 A. Jean was intensely -- not intensely, but a very
16 personable character, who, although she had a role in
17 the Heart Circle, did not come across as being an
18 officer of a unit so much as someone who wanted to know
19 how you were and was capable and willing and wanting to
20 share her generosity of spirit and her experience as the
21 mother of a child who had had heart surgery.
22 She said something to us once, before the
23 operation -- I think it was before the operation; it is
24 only a very little thing. She said "You will remember
25 this for the rest of your life, it will shape you for
0109
1 ever". I did not really think about it very much.
2 I thought it was a bit strong.
3 Later I was so glad she had said that, because it
4 was really the only thing that anyone had ever said that
5 helped. It simply meant that somebody had been into
6 that vast ocean before, and left a message "Don't
7 worry".
8 MR LANGSTAFF: We need to deal, finally, with the way that
9 you, overall, saw the various surgeons (and other
10 clinicians, for that matter) who treated your children.
11 You have, I think, different perspectives of the same
12 individuals. Can I deal first with Mr Dhasmana?
13 What do you have to say, Justine?
14 MRS EASTWOOD: I have a written statement here. Do you want
15 me to read that out?
16 Q. I will ask you at the end if there is anything further
17 you want to say.
18 A. I am sorry, I have lost the question.
19 Q. Obviously you are here, you are a member of the
20 Surgeons' Support Group, and you have expressed a number
21 of times the help that you felt Mr Dhasmana gave you.
22 Over what period did you have a chance to judge him?
23 A. 12 months.
24 Q. You saw him throughout the 12 months?
25 A. Yes.
0110
1 Q. Even though the operation was some time before Oliver
2 died?
3 A. Well, he had input into Oliver's life continuously,
4 because he was taking him for operations to look at his
5 trachea to see how things were going, because nobody
6 quite knew what the outcome would be with Oliver. He
7 had a regular input, so we had a regular input with
8 Mr Dhasmana on a very regular basis. Throughout that
9 time, obviously, we got to know him very well.
10 Q. He regularly came down to the BCH, where Oliver was,
11 did he?
12 A. Very regularly, yes.
13 Q. Did you see Mr Wisheart in the BCH, or not?
14 A. I would not have taken much notice, to be quite honest;
15 we were just focusing on Mr Dhasmana. Yes, he would pop
16 in -- it would not be an appointment to see Mr Dhasmana,
17 he would just turn up in the intensive care or in the
18 ward, just to have a chat to Oliver and to have a chat
19 to us. It was just regular input, really.
20 Q. Who was in charge of Oliver in the Intensive Care Unit?
21 A. As doctors? There was a team, not anybody particularly
22 in charge. It was a team of people.
23 Q. Did you have any sense of who was leading the team?
24 A. It varied on the time. No, not really, because it was
25 numerous people. Mr Dhasmana was always, I think,
0111
1 certainly in our eyes, the most important person. I do
2 not know if anything would have been done without his
3 knowing it. There were so many people that Oliver was
4 under; there was not one person as such.
5 MR LANGSTAFF: I will leave what else you want to say about
6 Mr Dhasmana to when you read what you have there, which
7 I imagine is going to answer the last question I ask
8 everyone.
9 Sheila, it is Mr Wisheart for you, is it not?
10 MRS FORSYTHE: Yes. Mr Wisheart was always absolutely
11 honest with us, even though Andrew was sort of having
12 peaks and troughs. He always, I think, was there to ask
13 questions of. I think his honesty was the thing which
14 shone through, more than anything. We felt that when we
15 turned our backs, if there was a problem Mr Wisheart
16 would be there. In fact, I believe he did spend a whole
17 night with Andrew, when he regressed and was very
18 critical.
19 To be honest, we would not have had any
20 opportunity, two days before surgery, to start looking
21 for second opinions or anything, so Mr Wisheart was
22 totally honest with us, and offered us surgery.
23 Q. Can I ask you what may be an impossible question, but
24 answer it as you best can: suppose things had not worked
25 out as they did for Andrew. Do you think that would
0112
1 have affected your view of Mr Wisheart? The principal
2 characteristic you have described was honesty.
3 A. That is right. I think we would have gone by whatever
4 he had suggested. I think if he had said, "Look, I am
5 afraid this is something that I do not feel comfortable
6 with, offering you surgery", I think we would have gone
7 with that and would have been happy with it. Obviously,
8 knowing now that Andrew would probably be terminally
9 ill, I think we would still have the same opinion, yes.
10 MR LANGSTAFF: What do you each have to say of Mr Wisheart?
11 MS WELBY: That Mr Wisheart was very, very honest with me,
12 right from the outset.
13 Q. So you pick on honesty as the very first thing you
14 mention?
15 A. Yes, although I did not appreciate that at first, I came
16 to appreciate that. He was the only one I trusted.
17 Q. The only one?
18 A. The only one. I could go to an appointment in Cornwall
19 with my doctor and say that I was not happy with
20 something with Jade, and he would give me an answer, and
21 if I was not satisfied with that, I would pick up the
22 phone, ask if I could come and see Mr Wisheart? Within
23 a fortnight I could come to that appointment, sit down
24 and talk to him. He would tell me exactly the same
25 thing as I had been told in Cornwall, but because he
0113
1 said it, I had trust in him.
2 Q. You said earlier on you felt fobbed off?
3 A. Yes, but not by Mr Wisheart. I have never felt fobbed
4 off by Mr Wisheart. He has always been very, very
5 honest, and I thought he really cared about the outcome
6 with Jade, which made me believe that she was in the
7 best possible hands. He cared as much as I did as to
8 whether she came through the operations or not, I always
9 felt that.
10 Also, when Jade was older and she was having
11 problems with being teased about her scars, I brought
12 her to see Mr Wisheart, and she sat and explained to him
13 about the fact that she was getting teased. He sat
14 down, put his arms around her and told her how brave she
15 was, how much of a hero she was to him for all she had
16 been through, and she should not let it bother her, but
17 having said that, she was to go away and think about it
18 and if she wanted something done, he would see what he
19 could arrange. She decided that she did not need
20 anything done now; that he had made her feel so much
21 better.
22 He is a very, very caring man, and I would not
23 want anybody else to operate on my daughter now.
24 I think I would be sitting here saying this to you, even
25 if I had lost her.
0114
1 MR LUNNISS: I can only repeat what the others have said.
2 He was immediately honest and very courageous,
3 I thought, and I never for a moment had nothing but
4 complete trust in him. I did feel that he was the
5 master of the situation, and when he was away for
6 a short holiday, at one stage, I was very aware of his
7 absence.
8 Q. This was when --
9 A. When William was in intensive care.
10 Q. So did it feel as though no one was in charge when that
11 happened?
12 A. I felt that there was a collective sense of his absence;
13 it was not just me who was aware that he was away. That
14 may have been an exaggeration on my part, but my
15 immediate feeling was almost, I would say, that I was
16 aware he was not there because I think everyone else was
17 aware that he was not there.
18 Q. So everyone had a sense of him as a controlling
19 influence?
20 A. Yes, I feel that, yes, certainly in terms of -- from the
21 moment the man does the job, he has this extraordinary
22 relationship with the patient, the child, which is very
23 hard to talk about in ordinary terms, which I think,
24 with his own particular character, produced a situation
25 where he was very much missed, I think.
0115
1 MR LANGSTAFF: I have asked you a number of questions. I am
2 going to ask each of you the inevitable last question
3 that I invite everyone to answer, if they wish,
4 reminding you that if there is anything you wanted to
5 add to the statements which you have given, on
6 reflection, anything which you wish, when you go home,
7 you had said which you have not, you are very welcome to
8 do so.
9 Perhaps if I could go round and begin, if I may,
10 with you, Karen, is there anything further you would
11 like to add either to make clearer what you have been
12 saying to us, or in particular, if you have any ideas as
13 to how things might be better for all parents in the
14 future, now is your chance.
15 MS WELBY: I think all I would like to say is that this is
16 a very difficult situation for everybody, and it would
17 be very easy to sit at home with your head buried in the
18 sand and not want to get involved, but I feel I owe it
19 to Mr Wisheart to have been here to have said what
20 I have said and to reinforce that he is a completely
21 honest, caring man. I think that is all I have to say.
22 MR LUNNISS: I would say that it is a very difficult
23 situation when your child is in intensive care, it can
24 be, especially if it goes on for a long time. You
25 should not try to pretend there is nothing wrong.
0116
1 Other than that, I would simply like, if this is
2 the right moment, on behalf of William, his Mum and Dad,
3 my wife and myself, the rest of my family and friends,
4 to say thank you to Mr Wisheart.
5 MR LANGSTAFF: Sheila?
6 MRS FORSYTHE: I would actually like Justine to read out
7 what I know she has to say about the media. May
8 I comment after that, because I think it may duplicate?
9 MR LANGSTAFF: Certainly.
10 MRS EASTWOOD: This is just a short closing statement which
11 my husband and I have actually put together, because
12 I am up here and he is not, so if you will bear with
13 me.
14 My husband and I are extremely grateful for this
15 opportunity to say a few words within this forum, and
16 outside of our statement, especially when there appears
17 to be an obvious imbalance in what the media has to say
18 about the Inquiry.
19 We have relived our particular story literally
20 word-for-word with the composition of our statement and
21 transfer of Oliver's diary onto our computer. This has
22 been a harrowing and traumatic period all over again,
23 especially as three days ago we buried Oliver's heart.
24 Even we wavered at points along the way, asking
25 ourselves if things would have been different --
0117
1 Q. Can I ask you to slow down a little, because this being
2 something you want others to hear, it is probably better
3 if it is taken slowly so it can be taken down by the
4 patient stenographers, who have done very well so far.
5 A. Even we wavered at points along the way, asking
6 ourselves if things would have been different had we not
7 gone to Bristol. It is only human to question oneself
8 when analysing retrospectively. However, "what ifs" are
9 not an option for us. What is done is done and life
10 moves forward. Looking within ourselves, the strong
11 belief and faith that we had, and still have, in
12 Mr Dhasmana, gives us the strength, determination, and
13 a purpose for enduring the detail all over again. It is
14 our belief that the best was done, given Oliver's
15 unusual condition and no blame could be assigned to
16 anyone for the outcome. My diary highlights some areas
17 which were in my opinion, inadequate during our time in
18 hospital, but I think it is fair to say that the NHS
19 will never be 100 per cent perfect.
20 The medical field throughout the country seems to
21 be making the headlines almost daily, for one reason or
22 another, so what will the outcome of this Inquiry be?
23 We have our hopes, but it is not easy for us to say.
24 If any good should come of this which will improve the
25 situation for staff and patients alike, it has arguably
0118
1 served a beneficial purpose. However, we feel very
2 angry that Mr Dhasmana appears to have been used
3 throughout this as a scapegoat, with some extremely
4 unpleasant things said about him that we refuse to
5 believe. His character has been openly assassinated and
6 his professional and family life lies in tatters because
7 of what this last 18 months has done to him. We believe
8 that many of the allegations made against him were
9 grossly unfair and now what does his future career hold
10 for him? Unfortunately, the stigma will remain long
11 after the press have gone home.
12 During 1993/94, on numerous occasions within that
13 12 months that we had dealings with Mr Dhasmana, he
14 impressed us with his honesty, integrity and
15 professionalism. He was both compassionate and
16 dedicated, far removed from the sort of person he has
17 been portrayed as in certain articles that we have
18 read. As stated in the previous statement, should
19 history be cruel enough to repeat itself, Mark and
20 I would have no hesitation in taking Oliver's brother or
21 sister to Mr Dhasmana. Hopefully, that in itself says
22 more than this summary ever could. I hope the new year
23 brings from fresh hope to Mr Dhasmana and his family,
24 and that they can put this injustice behind them in the
25 future.
0119
1 Thank you.
2 MR LANGSTAFF: Sheila?
3 MRS FORSYTHE: I wish I had made a statement and written it
4 down. I would like to say, I hope that good comes out
5 of this, and I am very, very sorry for all the parents'
6 anguish because obviously there has been an awful lot of
7 feelings, a wide variety of feelings that have been
8 brought to the surface. I just hope that the Inquiry,
9 in fact, brings some good and that the parents coming
10 behind us will be treated properly.
11 Once again, I have to say thank you to
12 Mr Wisheart, because without him, my son would not be
13 here.
14 MR LANGSTAFF: Sir, I do not know if the Panel have any
15 questions they want to ask?
16 THE CHAIRMAN: There are no questions from the Panel.
17 Mr Sharp?
18 MR SHARP: Sir, I know that the Panel will have read the
19 statements in full, and I would merely wish to bring out
20 some of those points which we can do by way of
21 submission, but I merely rise and say that for the sake
22 of the slightly wider audience.
23 THE CHAIRMAN: I understand. I think today, of all days,
24 we should ensure that submissions from behind come in
25 writing, so we hear those we are here to hear, although,
0120
1 of course, we are always delighted to hear yourself.
2 MR LANGSTAFF: Sir, can I thank all those who have given
3 evidence this morning? I suggest that now may be an
4 appropriate time for a lunch break, until, dare
5 I suggest, 2.10?
6 THE CHAIRMAN: You may dare to suggest it. That is an hour
7 that is slightly longer, but I assume you have a reason
8 for so doing, so as ever, I accept your advice.
9 Let me also thank Mrs Eastwood, Mrs Forsythe,
10 Miss Welby and Mr Lunniss for coming and talking to us
11 this morning. We have, as ever, been helped by the
12 evidence of those who have taken the opportunity to come
13 and talk to us.
14 I repeat what Mr Langstaff has said to you
15 already, which again applies to everyone: if there are
16 other matters that you feel you would wish to bring to
17 our attention, which you think will help us not only in
18 this phase of our Inquiry, but in the next phase, which
19 we are about to embark upon, then we will, of course, be
20 pleased to hear from you. Equally, we look forward to
21 hearing from Mr Sharp anything which may help us from
22 this morning's evidence.
23 For the moment, thank you very much indeed, all of
24 you. We will now adjourn until 2.10.
25 (1.15 pm)
0121
1 (Adjourned until 2.10 pm)
2 (2.35 pm)
3 MR LANGSTAFF: Sir, in this afternoon's session we will hear
4 from five more parents. I wonder, please, if they can
5 come forward. We have sitting up near the stenographers
6 Anne Waite, John Mallone and Marie Edwards.
7 Sitting to my right we have Phillippa Shipley and
8 Lorraine Pentecost.
9 Before they are sworn, may I say, for the benefit
10 of the wider audience, something perhaps I should have
11 said this morning: a number of the statements, not all,
12 but a number of the statements which each of the
13 witnesses has given us for today have come in at a time
14 which has not enabled us to circulate them as fully as
15 we would have wished to those who might wish to respond
16 to those statements in accordance with our usual
17 practice.
18 Accordingly, tonight if anyone looks on the
19 Internet for the statements from today they will not
20 find them and they will not find them until that process
21 has been completed and the statements will be
22 published. But they need have no fear that the
23 statements will be published, and published together
24 with any comments (if there are any) on those statements
25 from those who would wish to comment.
0122
1 THE CHAIRMAN: Thank you, Mr Langstaff, it is important you
2 remind us of that.
3 MR LANGSTAFF: Would you please stand to take the oath or to
4 affirm?
5 JOHN MALLONE (SWORN):
6 ANNE WAITE (SWORN):
7 MARIE EDWARDS (SWORN):
8 PHILIPPA SHIPLEY (SWORN):
9 LORRAINE PENTECOST (SWORN):
10 MR LANGSTAFF: I will go round each of you starting, if
11 I may, with the usual witness chair where we have three
12 of you. Marie Edwards, you asked to be called Marie for
13 the purposes of today?
14 MS EDWARDS: Yes.
15 Q. In fact you have all asked to be called by your first
16 names; I will do that, if I may. You want to tell us
17 about your daughter, Jazmine, your first child who was
18 born, was she, on 31st December 1992?
19 A. Yes.
20 Q. And who suffered from an anomalous origin of the left
21 coronary artery. Your statement we find at WIT 414.
22 I shall not take you to it, I do not think it is
23 necessary. Your statement describes everything that you
24 want to say about her birth and her life and treatment
25 that she received in Bristol?
0123
1 A. Yes.
2 Q. Mr Mallone, John, you are going to tell us, are you,
3 about your first child, your daughter known as Josie
4 Millers?
5 MR MALLONE: Yes.
6 Q. Who was born on 29th November 1990 and who died on
7 11th January 1991?
8 A. Yes.
9 Q. She suffered from a coarctation and VSD, did she?
10 A. Yes.
11 Q. Your statement, again it will be taken as read just as
12 Marie's will be, we can find at WIT 155. Anne, your
13 daughter was Caroline?
14 MRS WAITE: Yes.
15 Q. Born, was she on 17th February 1984?
16 A. Yes.
17 Q. And came to an operation on 18th April 1988 and died the
18 next day aged 4?
19 A. No, aged 2 years 2 months.
20 Q. I am sorry. You describe the circumstances surrounding
21 her life and death in your statement which is at
22 WIT 430.
23 A. Yes.
24 Q. Lorraine, you are going to tell us about your feelings
25 and events surrounding the life and death of your first
0124
1 son, Luke?
2 MRS PENTECOST: Yes.
3 Q. He was born on 6th March 1985 and was found to be
4 suffering from TAPVD?
5 A. Yes.
6 Q. Your witness statement is at WIT 267. Again, as with
7 the others, we will take it as read.
8 Philippa, you are going to tell us about Amalie?
9 MRS SHIPLEY: Yes.
10 Q. She was born on 29th June 1995?
11 A. Yes.
12 Q. And died aged 3 and a half on 6th January 1989?
13 A. Yes.
14 Q. She had complex anomalies which led to an early
15 Fontan's-type operation?
16 A. That is correct.
17 Q. You had the interesting, perhaps for us, distressing as
18 it may have been for you, experience of more than one
19 hospital in the treatment of Amalie's condition?
20 A. That is right, Amalie was treated in Liverpool.
21 Q. I lost that a little bit.
22 A. Amalie was treated at the Royal Liverpool Hospital,
23 staying there for 3 months during the summer 1985.
24 Q. You are able to give us from your perspective
25 a comparison of the Royal Liverpool Hospital and the
0125
1 Bristol hospitals?
2 A. Yes.
3 Q. And the approach of the staff at those. You tell us
4 that in the course of WIT 392.
5 A. Right.
6 Q. One of the features of the statement and the material
7 which you have annexed to it I think is that your
8 husband has a facility with a sketch pad?
9 A. Yes, he does.
10 Q. Perhaps we can see, you would like us to see what we
11 have at WIT 392/33. Can you see it? That is a picture,
12 is it, of Amalie when she was at Liverpool?
13 A. Yes.
14 Q. There is something of a pictorial record for those who
15 want to see, of Amalie's time?
16 A. Yes.
17 Q. Was your husband also able, following discussions which
18 you had at Liverpool, to draw diagrams of the condition
19 from which Amalie suffered?
20 A. Yes.
21 Q. So that your relatives could understand?
22 A. That is right. He could certainly draw the anatomy of
23 the heart very competently within a few weeks of our
24 arrival there.
25 Q. One of the beauties we have of the picture on the screen
0126
1 is that it gives a three-dimensional effect. Some of
2 the diagrams which may be shown of heart conditions and
3 operations may look very two-dimensional.
4 A. Yes.
5 Q. You say he drew diagrams for your family to understand
6 what was going to happen?
7 A. Yes.
8 Q. Were they three-dimensional --
9 A. Yes.
10 Q. The impression of three dimensions, like this?
11 A. Yes. If we were talking about them in design terms it
12 would be talking about an exploded axonometric, which is
13 an exploded drawing so you can see it from all angles,
14 you use it for construction. You can certainly do that
15 with a heart, the anatomy of it, you can see the
16 different parts of it, what was missing, what went in,
17 all sorts of things.
18 Q. Do you think there was a lesson there perhaps for those
19 who have graphic skills in presenting information for
20 parents?
21 A. That is right. I mean the surgeons and consultants,
22 doctors, would draw diagrams of what they were going to
23 do, what was the problem with her heart, so we were
24 visually able to understand that "that artery goes into
25 the wrong point here", "this wall is missing", all those
0127
1 things were shown.
2 Q. What do you have to tell us about the level of
3 information that you had as a young parent with Amalie
4 when you first knew that she was suffering from
5 a congenital condition of the heart?
6 A. That was -- from the morning, from the maternity
7 hospital we were first transferred to the Royal
8 Manchester Children's Hospital. They did an
9 echocardiogram later that afternoon and Dr Patel told us
10 in no uncertain terms really, not brutally, he did turn
11 the fans on in his room as he told me that Amalie had
12 complex heart defects which would require both closed
13 and open heart surgery. He would prefer that Amalie was
14 then transferred to Liverpool for continuity of care,
15 they could do closed and open there, they could only do
16 closed at the Royal Manchester, which he arranged.
17 So basically we were always given the bottom
18 line. That continued at Liverpool, we were always
19 explained, that it was high risk, it was complex, things
20 may go wrong, but hopefully they would not.
21 Q. How does that approach compare, for instance, Marie,
22 with the approach as you saw it?
23 MS EDWARDS: Sorry, could you ask the question again?
24 Q. How does that approach which was taken towards Philippa
25 in Manchester compare with the approach to you, I think
0128
1 in Bath, was it not, in respect of Jazmine?
2 A. Yes, in Bath, I was actually referred to the RUH through
3 refusal to --
4 Q. Can I stop you. We are losing your voice a little.
5 I think it is because you are looking towards me with
6 the microphone being a distance away. It is the fault
7 of the arrangements, I am sorry.
8 A. Basically, I was referred through my health visitor who
9 had concerns on my daughter's health. I was referred to
10 the GP for refusal to feed through mother's neglect. By
11 the time I got to the RUH through the referral from my
12 GP, it was found, after having a chest X-ray and an ECG,
13 the suspicion of having a cardiac problem.
14 Then I was sent over with Jazmine to the Bristol
15 Children's Hospital, where the cardiologist, Mr Joffe,
16 actually did an echocardiogram. That revealed that she
17 had quite a poorly heart due to --
18 Q. That was in May, when she was nearly 5 months old
19 I think?
20 A. Yes, then it was decided to transfer Jazmine over to
21 Bristol where she underwent more investigative work to
22 actually ascertain the severity of the damage that her
23 heart had under --
24 Q. Can I ask you this: Jazmine was your first?
25 A. Yes.
0129
1 Q. You had come to the Bath hospital because they were
2 suggesting that you as a mother had not looked after her
3 properly?
4 A. Yes, she was very thin.
5 Q. That must have upset you?
6 A. Yes, considering I had gone to the doctor, the GP,
7 14 times within the first 3 and a half months of my
8 daughter's life complaining of persistent cough.
9 Q. You and the GP have since parted company?
10 A. Yes. So it was quite obvious and apparent to my GP, he
11 actually broke down when I was staying at the RUH,
12 saying "I should have recognised she had a cardiac
13 problem, it is my fault. By the way, would you mind
14 being my wife's patient if you cannot cope with being
15 mine?" I said "No". So she went to the Bristol
16 Children's Hospital.
17 Q. In one sense the difference between your early
18 experience and Philippa's is that -- you both came from
19 different hospitals, but your early experience of
20 doctors so far as your daughter was concerned was
21 entirely negative?
22 A. Yes, and to actually get information, I was finding
23 myself pulling her X-rays out of the wallet on the way
24 back to the ward because they could not tell me anything
25 and they would not even speculate on how severe her
0130
1 condition might be, they were just telling me that it
2 may be her lungs, it may be her heart, they were not
3 clear.
4 Q. That was in Bath?
5 A. That was in Bath, yes. By the time I was referred to
6 Bristol and her cardiac anomaly had actually been
7 pinpointed, as it were, Joffe was telling me to take her
8 home, basically --
9 Q. Can I come back to that, I think you want to make
10 a particular point of that? Can I ask, John, what your
11 early experiences were and how they compared with those
12 we have heard of from Philippa and Marie?
13 MR MALLONE: They were different again because they started
14 whilst -- our daughter never left the hospital, she was
15 born in hospital and she never went outside. After
16 a couple of days when she was not feeding properly, we
17 constantly were given reassurance that it will be just
18 some problem with a teat, try a different method and so
19 on.
20 Then it became obvious that she was not well,
21 a heart murmur was detected and she was taken down to
22 the SCBU, Special Care Baby Unit and we were still being
23 given reassurance all the time and we subsequently
24 learned that the staff on that unit had suspected she
25 had a coarctation because her femoral pulses were weak.
0131
1 They did not tell us about that at the time; they kept
2 trying to make us feel that everything was okay.
3 Q. So one of you got false reassurance, whereas the other
4 got the naked truth, as it were?
5 A. If I could go on a little bit further?
6 Q. Of course.
7 A. When it became apparent that she did have a serious
8 heart problem, she had an echocardiogram and then
9 Mr Wisheart -- eventually after another couple of
10 doctors saw us -- came and explained to us she was going
11 to need an operation for coarctation and later when she
12 was older she would have to have open heart surgery as
13 well, but he was immensely reassuring. He used the
14 future tense, not conditional or anything. "She will
15 never climb Mount Everest" he said, "but she will be
16 able to ride a bike and run around like other
17 children". There was never any doubt coming from him
18 that, you know, she was safe, they would make her
19 better, which we found immensely reassuring.
20 Q. That was comforting at the time?
21 A. But there was never any mention of any possible risk.
22 As you know, she was paralysed as a result of the
23 operation and the band itself was not of the right
24 tension, so she subsequently died. But there was no
25 mention of any possibility that she would be paralysed,
0132
1 for instance, or brain damaged or anything like that.
2 We were only given the opinion, a positive outcome was
3 going to happen.
4 Q. What I was about to explore was the advantages and
5 disadvantages of the two different approaches, the
6 question of either being blunt but having the risk of
7 being very distressing possibly or being reassuring but
8 possibly false. How would you strike the balance,
9 having lived through it?
10 MRS SHIPLEY: As a parent, I felt what they did at Liverpool
11 was absolutely right, they were not brutal, but you need
12 to make a choice based on the facts and you should
13 therefore have facts at your disposal. If it is -- I do
14 not think they felt the closed heart -- they did not
15 give us any statistics, there is a huge thing in this
16 where people are given statistics, with Bristol. I was
17 never quoted a single statistic at Liverpool. The
18 closed heart ones were not a problem, really; they were
19 done immediately if they had to repair the aorta because
20 it was blocked, which they did. They obviously had to
21 do that. When they put the band on the pulmonary, these
22 were just operations that would enable her to grow
23 before they then undertook the complex surgery. The
24 Fontan was the complex and they wanted to leave that
25 until the age of 10, or around there.
0133
1 MS EDWARDS: I think it goes through more on a judgment of
2 the person feeding the information to the parent. The
3 parent needs to be able to communicate clearly and
4 decisively the needs of each individual parent. Some
5 parents want to know, other parents wish, and choose not
6 to. I feel strongly that each individual should be
7 treated in that way, as an individual person.
8 A harsh way of giving the information to a parent,
9 the way you deliver it or the amount of information that
10 you pass on to a parent, you know, I feel the person
11 should be able to have a feel of what that character is
12 and what their needs are as a parent and to ask their
13 wishes.
14 Q. Does that perhaps give rise to a risk? We heard this
15 morning how more than one parent desperately wanted to
16 believe that their child was going to come home and
17 there would not really be a problem. So they wanted
18 hope as against hope, almost.
19 What is the surgeon to do in that sort of
20 situation? Is he to give the parent reassurance even
21 though it may be false because that is what the parent
22 wants?
23 MS EDWARDS: No, but to give them time to actually get
24 their heads round the situation. You go into immense
25 shock, almost a shutdown of knowing that your child is
0134
1 in hospital per se and never mind the severity of the
2 operation, it is an operation, it is terrifying to any
3 parent because you know there is a risk factor. It
4 really does not, you know -- the equation of the
5 severity of it, it takes time for you to actually absorb
6 and to digest before you can move on to asking why, how,
7 when? So I feel it is up to the person that is
8 delivering the information to be skilled enough to read
9 the signs when it is time to give that parent enough
10 space to be able to gather their thoughts, as it were.
11 Q. That must be easier if one has a child with a condition
12 that does not require immediate treatment?
13 A. Be it 10 minutes, 15 minutes, 2 hours, that break can be
14 immensely important. Just to allow the parents to
15 realise what is going on. With me it was a terrible
16 shock to hear that my daughter was not going to obtain
17 an operation, yet she was going to die, was not given
18 that choice, the chance of life. To me it terrified me
19 but I can only speak from my experience and I feel any
20 form of 5 or 10 minute break to allow that parent to
21 understand and gather their thoughts and discuss it with
22 their partners if they have a partner with them.
23 Q. You felt that when Dr Joffe told you, as you tell us in
24 your statement he did, that she was inoperable?
25 A. He did not tell me she was inoperable; he basically said
0135
1 "Go home, take her home, she will be dead by the
2 weekend". He did not use the words "She is
3 inoperable". He just told me "There is the door, please
4 leave. You are wasting our time, you are wasting our
5 resources and another child could do with the bed that
6 your daughter is laid in."
7 Q. He said it like that?
8 A. Yes, very harshly, very harshly.
9 Q. You were saying the harsh news was dealt with but not,
10 you said, harshly in Liverpool?
11 MRS SHIPLEY: You are a parent; if your child is very ill,
12 they have to inform you and it is harsh news. Like you
13 are saying, it was not presented in a bad way to us,
14 "We can repair this", "We can do this." You are
15 exactly right on your point if you need an operation
16 immediately, you have not really time to absorb the
17 shock. You have to absorb the shock on an ongoing
18 basis, do you not? It will probably take a couple of
19 years to get over and get yourself right. It is a shock
20 but you have to react to it.
21 Q. Lorraine, how was the news broken to you?
22 MRS PENTECOST: It all started at the RUH in Bath. The day
23 after Luke was born he kept on being very white and he
24 was like projectile vomiting, but every time I got
25 anyone to answer the bell, his colour was back to
0136
1 normal. It is only because I persisted that there was
2 something wrong with him that they would do anything.
3 They took Luke down to special care and ran some
4 tests on him. It was something to measure the oxygen
5 levels in his blood. They put him on one machine and it
6 was not reading properly and they said that the machine
7 was broken. They put him on another machine and it was
8 a Sister that was working in special care. I knew her
9 personally because my parents both worked at the
10 hospital. She called me to one side and said "There is
11 something wrong with his heart, we do not know what, but
12 there is a heart complaint".
13 Q. Let it be said, this was not at Bristol, it was at Bath?
14 A. This was at Bath, yes.
15 Q. The same hospital that Jazmine was at.
16 The way you found out about Luke's problem was
17 from somebody you knew rather than from the doctor?
18 A. Yes, yes.
19 Q. Do I take it you think that would be inappropriate?
20 A. I mean it was very nice because I knew her.
21 Q. Did that make it easier?
22 A. Yes, but I mean they only said they think there is
23 a problem, they were not actually sure.
24 Q. When did you find out from Bristol? What was your
25 first --
0137
1 A. The day he had his operation. The day he had his
2 operation was the first I was told that there was
3 definitely a heart problem.
4 Q. Was it all very sudden then?
5 A. Very quickly. I was at home and I had a telephone call
6 asking me to come over because he had deteriorated
7 during the night. I arrived at Bristol and I signed for
8 him for a catheter. They sent him to have a catheter.
9 I signed a form for the catheter.
10 Luke came back from the catheter and it was -- it
11 seemed to be panic stations. I was told he had TAPVD
12 and they were going to have to operate the same day,
13 they were going to operate that afternoon.
14 Q. Does that mean that effectively you were given no
15 choice --
16 A. I did not have a choice, they said they have to operate
17 immediately.
18 Q. Although you were asked to consent to that, of course,
19 given that information, you did so?
20 A. Yes, yes.
21 Q. I will come back to what you were told about the chances
22 of the operation, because you want to say a number of
23 things about that, I think?
24 A. Yes.
25 Q. We have not, Anne, picked up with what happened to you
0138
1 and how it was that you discovered that Caroline was
2 subject to a heart condition?
3 MRS WAITE: Yes. There was nothing wrong with her as far as
4 we knew. She was approximately 18 months old. She was
5 rushed into the Royal Gwent Hospital with a high
6 temperature which, you know, we thought nothing of; it
7 was just a chest infection as we were told. Later on
8 the same day we were told she had a heart murmur.
9 She was kept in overnight and then the following
10 day she was given an echocardiogram. We were then told
11 we would have to wait for an appointment for Bristol to
12 see Dr Jordan, but there was no urgency at all because
13 she was showing no symptoms of anything wrong with her
14 face or colour or anything; she was perfectly healthy.
15 Q. It was Bristol, nowhere else was suggested?
16 A. No, we were not given an option: it was Bristol,
17 Dr Jordan. Nobody told us there was anywhere else to
18 go; we were just told Bristol, Dr Jordan.
19 Q. That was very much the same pattern as had been adopted
20 in Lancashire, was it not?
21 MRS SHIPLEY: Yes.
22 Q. You went to Manchester and Manchester said you ought to
23 go to Liverpool and that is where you went?
24 A. They wanted continuity. Liverpool did open and closed
25 heart surgery and it would be better for her to be
0139
1 operated in that hospital as opposed to the closed heart
2 done in Manchester, and then transferred to Liverpool.
3 Q. No-one suggested Great Ormond Street or --
4 A. No, no, I would say they tend to refer you to a regional
5 centre in your locality.
6 Q. You were happy with that?
7 A. My sister had had an operation in Liverpool, she was
8 fine, she had a heart operation there.
9 Q. Looking ahead, how was it you came from Liverpool to
10 Bristol?
11 A. We did not. We went via Killingbeck actually, which was
12 in Leeds. My husband was an art student, his final year
13 was in Leeds, so Liverpool referred us to Killingbeck,
14 to Dr Kirk there.
15 Q. That was to be local?
16 A. Yes, so we were there for a year under his care and then
17 when we moved to Swansea, I came to University there, our
18 case was referred to Bristol, Dr Joffe.
19 Q. You were quite happy to move around because the centre
20 was nearer, or were you?
21 A. I think we did discuss the option of whether her care
22 could remain at Liverpool but that was ruled out by
23 I think our GP and her local consultant. That was in
24 Swansea, Morriston Hospital, as not being really much
25 good -- they did not do that, you tended to be in the
0140
1 care of a regional centre, you did not really have
2 a choice where it was.
3 Q. Again, it was a question really of fitting in with
4 whatever the system appeared to be and not --
5 A. Yes, I would have said that was the system. Wherever
6 you were living, it was the nearest regional centre was
7 the one you were referred to. If it was South Wales
8 then it was Bristol, like if you lived in Yorkshire it
9 would be Leeds, so ...
10 Q. Anne, I cut you short.
11 MRS WAITE: We just waited for the appointment at Bristol
12 then and Caroline just carried on as normal, nothing
13 wrong with her at all.
14 She just had the catheter done, no ill-effects,
15 straightforward. Then we were called back to discuss
16 the results of the catheter and we were told that she
17 had a basic ASD, hole in the heart, no problem, easy
18 surgery, 95 per cent chance of survival, which we
19 thought at the time very minimal risk, which is the same
20 for a general anaesthetic.
21 We were in our early 20s at that time, so fairly
22 naive.
23 Q. Who quoted you that risk?
24 A. It was a doctor we saw at clinic. I think it was
25 Dr Mulpatra? Dhasmapatra? We were quoted that in the
0141
1 clinic before. He said, "She will be put on the waiting
2 list for open heart surgery to repair the hole, the
3 patch.
4 Q. The thought of open heart surgery, it sounds terrible,
5 did you ask about what the risks meant or how serious it
6 was or --
7 A. We were told it was a fairly straightforward operation,
8 which we took as read, and there was only a small chance
9 of anything going wrong. We were quite shocked really
10 that it was open heart surgery, seeing that Caroline had
11 no symptoms at all of any heart problems. You know, you
12 do not question people, you trust doctors and that is
13 what they said was best for her so we just carried on
14 and did not question them at all.
15 Q. I come back to you, Marie, the way in which things
16 developed because the description you give us of the
17 conversation with Dr Joffe, of course he has not yet had
18 a chance to respond to what you have had to say, he
19 takes the view that really there is nothing he can do
20 and says so in terms which you found uncaring and
21 insensitive?
22 MS EDWARDS: Really disturbing, actually. At the time
23 I could not believe anyone could be so callous and so
24 cold towards a child, a baby, let alone how he has
25 delivered it to me. I found it really distressing to
0142
1 say the least. So I said to Dr Joffe, you know, "Is
2 there no chance that there is any surgeon that would
3 attempt to correct her heart?" and with that a meeting
4 was set up, I believe Wisheart, Dhasmana, Dr Martin was
5 there I believe and I basically waited on tenterhooks to
6 hear the verdict. Helen Vegoda came in with Dr Joffe on
7 to the ward and basically said "We have all looked at
8 the echocardio scan and the catheterisation video and we
9 feel she is non-operable.
10 With that --
11 Q. Helen Vegoda --
12 A. With Joffe. It was Joffe that was talking to me. Helen
13 Vegoda was there.
14 Q. What was Helen Vegoda's role in this, just to be there
15 or what?
16 A. Yes. She was supposed to be a carer for the parents,
17 a parental guider really, for the welfare of the parents
18 but I found her very irritating, very patronising. She
19 had never had children and when she used to come along
20 to me when there had been other meetings held, she would
21 almost gloat to tell me that she had been within the
22 meeting, she knew what had happened but she could not
23 tell me any information from it, knowing I would have to
24 wait at least another 4 or 5 hours until the next ward
25 round.
0143
1 Getting back to this meeting that had gone on,
2 Joffe actually said to me, "Dhasmana is going to come
3 down to the ward and speak to you about the reasons why
4 we held the meeting and the reasons why we have refused
5 cardiac surgery for your daughter".
6 The nurses thought it would be a good idea to
7 leave Jazmine in the nurses' station because they knew
8 Dhasmana would be sitting in there reviewing Jazmine's
9 medical notes. For a child that was said to be so
10 poorly, most of the doctors there on the ward rounds
11 expected to see a child that was capable of doing
12 nothing but lying on its back and perhaps cooing or
13 giggling. Jazmine spent at least 4 hours a day in
14 a bouncy chair kicking her legs like a mad thing,
15 playing with baby things and things like this.
16 Q. She was now, what, 6 months old, was she not?
17 A. She was at that point about 5 months and 1 week.
18 Q. Dr Joffe's prediction that she had only a few days to
19 live was --
20 A. She continued I think another 8 days after that
21 prediction. But I was told it was medication,
22 Frusemide, that was keeping her alive. But I placed
23 Jazmine in the bouncy chair and the ward sister came
24 down and said "Quick, quick, put her into the Sister's
25 office, the nurse's station and Dhasmana will be sat in
0144
1 there and he will communicate with her, he quite enjoys
2 watching children". I was called by one of the nurses
3 to come into the office to talk to Dhasmana and he said
4 "I will be down with you in a moment to see your
5 daughter", to which I said "You have already met her,
6 you have been in her presence for about 35 minutes" and
7 pointed down to Jazmine in the bouncy chair and with
8 that he took his pen and scribbled out the medical notes
9 that he had just written, refusal for the actual
10 surgery, and he actually explained to me that that is
11 what he had done. He said "I cannot refuse a child that
12 has made medical history for survival so long and is so
13 lively".
14 Q. Did any of the doctors who spoke to you, Dr Joffe or
15 Mr Wisheart, or for that matter, did they indicate
16 through Helen Vegoda, what it was about Jazmine's
17 condition that made it so difficult?
18 A. The fact that it had not been picked up from birth.
19 I was told, but I do not know how true it was, that life
20 expectancy, it was only weeks and also she had suffered
21 heart attacks as well.
22 Q. There had been changes going on because of the delay in
23 bringing her in to the Bristol hospital, really?
24 A. Yes. The heart chambers beat as two chambers up to six
25 weeks and then floated to four, so, yes.
0145
1 Q. To shorten the story perhaps a little, Mr Dhasmana
2 agreed to operate although obviously his initial
3 judgment on the papers --
4 A. Because he had met her, yes.
5 Q. Because he had met her?
6 A. Yes.
7 Q. I will come back to what happened afterwards in a moment
8 or two. Before I do, did you have any percentage risk
9 quoted to you or did you understand really from
10 everything that had happened that it was something of an
11 achievement to persuade Bristol to operate at all?
12 A. I felt that I had pushed them into a corner as well
13 because I had got in contact with a hospital in America
14 to find out if they could actually -- I had had
15 a discussion with Joffe to see whether or not we could
16 be put on the transplant list and he said it was not
17 viable, by the time a heart came up that was compatible,
18 she would have died --
19 Q. You tell us in your statement you checked out the
20 information and you found out it could be done,
21 challenged him with the information and he did not like
22 it very much?
23 A. No, no he said "How would you raise the money to
24 actually finance the purchase of her heart and get it
25 transported to Britain?" I said, "Well, Concorde will
0146
1 transport it free if they have the free publicity, which
2 are they are welcome to, and I would go to any newspaper
3 to raise money". Obviously if I could go to a glossy
4 magazine I would rather than go to a tabloid paper, but
5 at the end of the day --
6 Q. You argued your corner?
7 A. Yes.
8 Q. As you say, pushed them into a corner and Mr Dhasmana
9 was then going to operate. Did you have any idea what
10 the unit, the surgeon, Dr Joffe, Mr Dhasmana thought the
11 chances were --
12 A. Mr Dhasmana would not put a figure on it.
13 Q. In a sense, did it matter to you, so long as you gave
14 her a chance?
15 A. Yes, but in retrospect I really do not know how much of
16 the information I was given was the truth. For her to
17 be well enough before she went into hospital, to breast
18 feed and take solids, be weaned, to the situation of
19 having been NG-tubed, fed, because the medication made
20 her vomit all the time and the condition of her in her
21 state of fitness, I just do not know how much of that
22 knowledge to believe.
23 Q. Philippa, you had the experience of Liverpool and
24 Bristol in terms of explaining what was going to happen
25 and setting out the risks and so on. How did they
0147
1 compare?
2 MRS SHIPLEY: I thought they were very competent at
3 Liverpool, explaining risks, what they were doing,
4 keeping you informed. We saw the consultants as soon as
5 we arrived. We sat down with Mr Hamilton for at least
6 on hour. After each operation he explained what he had
7 done, how he hoped it would progress. We had a long
8 conversation after the coarctation of the aorta and he
9 said he had not put a band on the pulmonary because he
10 hoped he may not have to do that and she might thrive
11 without that. He also told me after the second
12 operation, when they had in fact banded the pulmonary,
13 that -- I mean she looked cared for. She got very cold
14 in theatre.
15 When we went to see her in ITU, they put on a big
16 fleece, they told me she was laying on a fleece. They
17 told me things I could not possibly know unless they
18 came from someone like him. He came into a long
19 conversation -- he was obviously very enthusiastic about
20 his field and he was telling me about the Fontan
21 operation and he had met the bloke who had pioneered
22 this operation and he described him as a "creative"
23 heart surgeon, and it was the first time I thought of
24 like creativity in those terms and I can remember
25 thinking "Yes, he would be if he is -- you have invented
0148
1 something, have you not, he is creating" and he lived in
2 San Francisco. I could not know those things, they were
3 all sorts of add-ons, but that was the level of
4 information we were given. That was consistent through
5 the nursing staff.
6 Q. A mixture of information and chat, from the way you
7 describe it?
8 A. They are telling you things like, "Amalie has complex
9 heart problems", but they are also involving you. So it
10 is perhaps less of a shock, you know, and you start
11 seeing it as a whole thing, it is not just like "We have
12 this great big problem here and lots of hearts", it is
13 an overview. He told me about the bloke who had
14 invented the operation.
15 Q. How does that compare to what happened when you came to
16 Bristol; I think you saw Mr Dhasmana?
17 A. I saw Mr Dhasmana on 20th April 1988. I did not know
18 who he was. It was one of Joffe's appointment cards
19 with his name crossed out, Mr Dhasmana. I opened it up
20 and it had the date and the time and it just said
21 a further appointment. We went, I met him, it was at
22 St Michael's Hill. It was a hot spring day, he was in
23 his shirt sleeves in the office and I do not think we
24 were in there quite 10 minutes and he explained that he
25 wanted to bring her final operation forward by years.
0149
1 Q. Did he say why? Yes or no?
2 A. I discussed this with Andrew. No, he did not explain,
3 he did not really have time to explain. He announced,
4 as we went in, that he wanted to bring the Fontan
5 operation forward. I had spoken to Dr Joffe after the
6 catheter a couple of months earlier on the ward. He
7 said they could confidently leave it for a few years.
8 So I challenged him. I said "but Dr Joffe said ..." and
9 he said "Do not come into me with hearsay", which was
10 a trifle brusque. Then I started again, I was quoting
11 Liverpool. They had said until the age of 10. He said
12 "There is significant medical evidence that children
13 who weigh as little as 10 kilograms can undergo this
14 operation". There was a weight chart on the wall and
15 I looked at the weight and he just weighed 10 kilograms.
16 We both, until very recently, thought that was why they
17 brought it forward because they could.
18 Q. You are giving the impression of not being involved in
19 Bristol in the way you had been in Liverpool and much
20 less time being spent?
21 A. Definitely far less.
22 Q. Being pushed through?
23 A. After the catheter we saw Dr Joffe for two minutes on
24 the ward -- two, three minutes, a minimal amount of
25 time. We did not see him again, and left the hospital.
0150
1 We had that very short interview with Mr Dhasmana --
2 Q. Did you say to Dr Joffe "You said it did not have to be
3 done and Mr Dhasmana says it does", or words to that
4 effect?
5 A. He was not there. Dr Joffe was not there and Amalie did
6 not have a further appointment with him for some months.
7 Q. Did you ever raise the discrepancy?
8 A. My reluctance was noted. I read Amalie's medical
9 records for the first time on Tuesday evening. After
10 the meeting with Mr Dhasmana -- obviously you discuss it
11 with friends and family and basically you are in the
12 position where, what we concluded was you have to take
13 professional advice, even "That is what we are
14 advising", you know, I am a layman, you would have to
15 take it.
16 But we did write and explain to Dr Joffe that it
17 had obviously come as a great shock to us and we would
18 like the summer together as a family. He wrote back and
19 said "Yes, all right then". But the note in the medical
20 records says -- it is a postscript to Mr Dhasmana,
21 "I think the mother has overcome her reluctance".
22 Q. Were you reluctant?
23 A. I was reluctant.
24 Q. By agreeing to the operation you had overcome it?
25 A. Yes.
0151
1 Q. In a sense it is a fair description?
2 A. What, that I was reluctant?
3 Q. You had overcome your reluctance?
4 A. Basically I suppose in the back of my mind was if they
5 did not do the operation, she would die; that was the
6 only thing that made me overcome it.
7 Q. Lorraine, we had stopped at about this stage in the
8 process, if I can call it that, when you were going to
9 tell us what had been said to you in the rush before
10 Mr Wisheart operated on Luke.
11 What did he say to you about the operation that
12 Luke needed?
13 MRS PENTECOST: He told me that Luke had TAPVD; that if he
14 did not operate he was going to die.
15 Q. Did he give you some idea of what TAPVD was?
16 A. He ripped a piece of paper out of a notebook and with
17 his pen he drew a quick diagram.
18 Q. You say "quick"; how long was your chat with him?
19 A. Couple of minutes, 5 minutes at the most.
20 Q. Were you on your own?
21 A. No, my husband at the time was with me.
22 Q. You discussed afterwards what had been said to you.
23 No doubt you discussed what had been said to you
24 afterwards?
25 A. Yes.
0152
1 Q. Did you both take the same messages away from the
2 meeting?
3 A. We were both led to believe that even though he said he
4 had never seen this type of operation before --
5 Q. That is Mr Wisheart?
6 A. Yes. He said he had never done this type of operation
7 before and he had never seen one, but he did know of
8 a surgeon who had done one. He said he was going to
9 contact him.
10 I was led to believe that Luke's condition was so
11 rare that only a few -- only one doctor had ever
12 operated on it before.
13 Q. Did that give you the idea that it obviously was
14 something which was really quite serious?
15 A. No, I was always led to believe that it was just
16 basically a vein that had to be cut off, twisted round
17 and stitched back on again. I know he said it was a
18 1 in a million chance of Luke actually having this, but
19 he was so full of confidence, he was so full of himself
20 to say that "yes, this is an unusual type of operation,
21 but I can do it". I mean he never put any doubt in my
22 mind that he was capable of doing it.
23 Q. If he was expressing confidence or giving you the
24 impression of confidence, for what reason did you think
25 he was saying to you, "Look, I have never actually dealt
0153
1 with such a case before but I know somebody who has and
2 I will speak to him"? What did you think he was trying
3 to convey by that?
4 A. At the time I never really thought about it, I mean
5 I had just been told that he had this heart condition;
6 that if they did not operate he was going to die.
7 I never really thought that much about it at the time.
8 I just thought if he does not have it, he is going to be
9 dead.
10 Q. So in effect you had no choice?
11 A. No, I was given no choice.
12 Q. Whatever Mr Wisheart had said, you would have, assuming
13 you had got the message from him that the situation was
14 critical, you would have agreed to the operation, would
15 you?
16 A. Yes. This surgeon that he spoke to or said he was going
17 to speak to, I did not even know if he was in the
18 country. There is major heart surgery all over the
19 world. I just took it that Mr Wisheart was the only one
20 who could do it, you know. I had no choice.
21 Q. Neither you nor your husband said afterwards, "What was
22 he telling us that for because after all we have to do
23 it, we have no choice really; in Luke's best interest it
24 has to be done"? It almost sounds like saying, "You
25 should have confidence in me for my manner but not for
0154
1 my record", or words to that effect, but you thought no
2 more about it?
3 A. No. I just thought he had to have this operation or he
4 would die.
5 THE CHAIRMAN: Can I interrupt you, Mr Langstaff? Following
6 on from what you said, Mrs Pentecost, to go back to
7 Mrs Shipley, to understand what I think you were saying,
8 when the expression "Mother has overcome her
9 resistance", to you, as I understood your evidence,
10 really meant you did not really see you had any other
11 choice?
12 MRS SHIPLEY: Yes. I did not think there was any
13 alternative. We were not given any.
14 MR LANGSTAFF: You have since I think were worried about
15 whether you were quoted the right risks, because you
16 were quoted a percentage, were you?
17 MRS PENTECOST: I was told the success rate was 60 per cent
18 in Luke's favour.
19 Q. Did either you or your husband think at all -- I am not
20 suggesting you should have done; I am just asking if you
21 did -- to say, "How can you say 60 per cent when you
22 have never actually done one"?
23 A. It never entered my head. I was young. I had never
24 come in contact with anything to do with heart surgery.
25 Everybody instilled such confidence that they were going
0155
1 to operate and everything was going to be fine. I was
2 in a state of shock because when Luke was admitted to
3 Bristol there were doubts as to whether there was
4 a heart condition there. They kept on saying "chest
5 infection". One minute I was thinking it was a chest
6 infection, and then they are saying "No, heart surgery".
7 Q. You had the uncertainty then of the information and
8 suddenly you are presented with a "must do" operation
9 and you have no choice?
10 A. Yes.
11 THE CHAIRMAN: Mrs Pentecost, Mr Langstaff is not suggesting
12 you should have thought that question. It is no
13 surprise that in the circumstances you did not think of
14 any question, it was just had you, so as to get an
15 answer, but by no means a statement that anyone might
16 have thought of that.
17 MR LANGSTAFF: Absolutely.
18 Anne, when it came to Caroline's operation, what
19 in particular -- you again have particular comments to
20 make about what you were told beforehand.
21 MRS WAITE: Yes. We were told there was a 95 per cent of
22 nothing going wrong whatsoever, she would be fine. This
23 was a very fairly operation, a very simple operation, as
24 we were told, and we had even seen a little boy the date
25 she was admitted that had the same operation from
0156
1 Bridgend. He was fine, running around, no problem
2 whatsoever. We thought that will be Caroline in
3 a couple of days' time, you know.
4 Q. You were told about the atrial septal defect, the ASD?
5 A. Yes.
6 Q. It turned out, certainly that Caroline also suffered
7 from what we have come to know as on LVOTO; is that
8 something you knew before the operation?
9 A. No.
10 Q. When did you first know that she suffered from that?
11 A. Not until we saw the medical records which were very
12 much later, which was in -- I think it was 1996.
13 Q. After the operation, moving ahead for a moment, did
14 Mr Dhasmana say anything to you that indicated that
15 things had not quite been as he had thought when the
16 risk was quoted to you in the first place?
17 A. He just said it was more complicated than he had
18 thought, his first thought with the catheter, et cetera,
19 and he did not think there was any change in the risk,
20 it was still a 5 per cent risk we were given of anything
21 going wrong, so we did not think anything of it.
22 Q. Did he say when he discovered that things were more
23 complicated than had first been thought?
24 A. He only told us this after the operation, so ... we only
25 saw Mr Dhasmana after the operation, we never saw him
0157
1 before the operation. We saw him basically when she was
2 already dead. Then a month later he said, "There were
3 more complications than we originally thought", but you
4 know, he never changed what he had said to us.
5 Q. Did he give you any explanation as to why it was they
6 did not know of those complications before they operated
7 on Caroline?
8 A. Not as far as I can remember. All I can remember him
9 saying was that it was early days for doing
10 echocardiographs and they were not very clear,
11 et cetera. We are talking about 1986. It has come on
12 in leaps and bounds since that.
13 Q. He essentially blaming the echocardiography as not
14 showing him before the operation what he was to find
15 during the operation?
16 A. Yes, that is right.
17 Q. John, what do you have to say about the way in which
18 risks and explanations of surgery were dealt with so far
19 as Josie was concerned?
20 MR MALLONE: We were given a figure of 95 per cent success
21 rate by Mr Wisheart himself, I think -- if not him, by
22 a junior doctor whom we saw on the same day. We saw two
23 doctors who both explained what would happen in the
24 operation and it was either Dr Ruth Gilbert or
25 Dr Wisheart, I think, who gave that figure.
0158
1 Q. Do you think you understood what the operation was to
2 be?
3 A. Yes.
4 Q. Was time taken with you?
5 A. Yes, and we were -- I cannot not remember how long.
6 We had explained to us twice, by both this junior doctor
7 and this surgeon who was going to perform the operation,
8 and I felt I understood what was going to happen. In
9 the event, that is not what happened, but ...
10 Q. You described I think a reasonably detailed conversation
11 the night before Luke's operation. Is it rather
12 different from your experience, Philippa, when talking
13 about Mr Dhasmana because you feel you were
14 short-changed in terms of time, I think -- it is my
15 expression, but that is what you are reflecting?
16 A. Certainly the initial appointment for a shock, for it to
17 take such a short period of time to explain basically,
18 "We will bring the operation forward seven years.
19 It is not a problem, is it?" But I thought it was too
20 short.
21 We saw him on the morning of 4th January -- that
22 was Dhasmana -- to sign the consent forms, because then
23 he began talking about the ethics of that sort of
24 surgery. That would have been absolutely right, to my
25 mind, because you are interfering with the natural order
0159
1 of things. This is a child who would not survive and
2 I had had concerns about whether I was being selfish
3 really, because open heart surgery is such a violent
4 intrusion into a small body, to push her through that.
5 I was concerned that I was not doing it for my own
6 selfish reasons and that there had to be a good chance
7 for her for me to let her undergo that.
8 Mr Dhasmana started to talk about ethics and
9 saying that the ethics of this sort of surgery bothered
10 him as well, and I understood that to mean the same as
11 I felt: that you are interfering with the natural order
12 of things.
13 Q. This was a sympathetic conversation --
14 A. This was on the 4th of the 1st. I do not know whether
15 his understanding of ethics is the same as mine, but
16 that is what I took that conversation to mean, because
17 I had doubts really, considerable doubts. I had to be
18 sure in my own mind there was a good chance Amalie would
19 survive just to, you know --
20 Q. To justify it?
21 A. Yes.
22 Q. John, back to you for a moment. Picking up on the same
23 point as I was discussing with Anne a moment or two ago:
24 did you discover after the operation from anything that
25 was said to you that things might not have been as they
0160
1 seemed at the start of the operation?
2 MR MALLONE: Initially no, it just continued with
3 reassurance and everything was fine.
4 They were actually withholding their suspicions
5 that she was paralysed from us. She had been paralysed
6 during the operation --
7 Q. If I can take you to just before that: you had a shock,
8 I think, when you saw Josie in intensive care following
9 the operation?
10 A. Yes. Absolutely, no, we were not prepared for that at
11 all. I can only describe her appearance as being like
12 a corpse; she was absolutely grey. I do not know what
13 I thought she was going to be like, tucked up in a cot?
14 I do not know what I imagined, but she was actually on
15 a steep incline on this incubator with obviously lots of
16 wires going into her arteries and she was on
17 a ventilator as well.
18 Q. You asked why she was like this, did you, or --
19 A. I do not think we did. We were too much in shock,
20 I think. Mr Wisheart was there -- this was at 3.00 in
21 the morning. One concern I had was -- that we both had
22 at the time -- was that he was operating at the end of
23 a day when he had been at work since 9.00 in the
24 morning. He started this operation at 7.30 in the
25 evening and did not finish it until 3.00, finally went
0161
1 home some time after 4.00 and he was back on the ward at
2 8.00 in the morning. I could not understand how anybody
3 could do that, physically stay awake that long and
4 perform complex surgery, but he was there and he said he
5 thought the operation was okay; he had performed the
6 coarctation and everything was going to be all right,
7 I think, at that stage.
8 Q. Did he say anything about having to take a different
9 approach in the operation than that he had originally
10 thought of?
11 A. Yes, yes, he did. I really cannot remember whether he
12 explained that to us then or the following day, whether
13 it was later in that day that he explained it to us, but
14 he explained that he had expected her aorta to descend
15 on I think the left-hand side but it descended the other
16 side. I cannot remember the details, but the anatomy of
17 her arteries was different from what he had been led to
18 believe, therefore --
19 Q. There was something that had not been picked up
20 beforehand which faced him on the operating table?
21 A. Exactly, so he had cut her open on one side expecting to
22 be able to do both the banding of the pulmonary artery
23 and the coarctation, but had discovered he could not do
24 the coarctation from that side. Presumably, faced with
25 the fact he had already cut her open, he thought he had
0162
1 better do the pulmonary artery banding.
2 I think that was all he said at that stage about
3 that. Very very recently, only last week, it dawned on
4 me, if that is the right word because I am not sure
5 I have got it right, that -- I reread the operating
6 note, which is the only bit of the medical records that
7 we have, and he said in that operating note that he
8 banded the pulmonary artery but he did not take any
9 measurements to see if the pressure was right, if the
10 band was the correct tightness, because that would have
11 been useless as he had not yet performed the repair to
12 the aorta, so he would have been measuring something
13 that was about to change. So he had to guess the size
14 of the band, but he did not tell me any of that, I am
15 just -- it is something I have worked out for myself.
16 Therefore he had to do the coarctation repair from
17 the other side. That was all he said at that stage.
18 Q. That is all I wanted to ask you. Can we move away from
19 the operation itself and talk to you a little about the
20 nursing care? I suppose I ought to ask actually before
21 I get there, Philippa, did you see the anaesthetist
22 before the operation?
23 MRS SHIPLEY: No, I did not.
24 Q. Did you see Dr Joffe before the operation?
25 A. No, I did not.
0163
1 Q. Did you see Mr Dhasmana?
2 A. I saw Mr Dhasmana before the operation on the 4th of the
3 1st, but I did not see the anaesthetist; I did not see
4 Joffe.
5 Q. Did you see the anaesthetist?
6 MRS PENTECOST: No.
7 Q. Did you?
8 MS EDWARDS: Yes. He came down to see myself and my partner
9 the morning before the operation.
10 Q. Who is "he"?
11 A. Stephen Bolsin. He just asked me if everything had been
12 explained to me prior to Mr Bolsin's appearance.
13 Dhasmana and myself and my partner had already had
14 a 15 minutes consultation, if you like, on the
15 procedures of medication for her. Her pre-med would be
16 given, the routine of which lift she takes down,
17 basically the routine of what would happen the following
18 morning.
19 Q. John, did you see the anaesthetist beforehand?
20 MR MALLONE: I do not think so. I have no recollection of
21 it.
22 Q. You cannot remember?
23 A. We saw lots of people, but I do not recall an
24 anaesthetist coming to see us.
25 Q. Anne?
0164
1 MRS WAITE: Yes, I remember seeing an anaesthetist. I think
2 there were two, a male and female.
3 THE CHAIRMAN: We did not hear that answer.
4 MRS WAITE: We saw a male and a female anaesthetist, who
5 came to see us before the operation, to sign the consent
6 form.
7 MR LANGSTAFF: Turning to the question of the nursing care,
8 I suppose the best thing to begin with, Philippa, is any
9 comparison you are able to give us between the nursing
10 care as you saw it in Liverpool and that which you saw
11 at the Bristol hospitals?
12 MRS SHIPLEY: During the evidence -- we were only here
13 briefly this morning, but one of the ladies from the
14 Surgeons Support Group said that parents had dropped
15 a child off and left. That had happened exactly the
16 same; somebody did that when Amalie was admitted,
17 dropped a child off and left. We did the same, just
18 looked after him. I think he was operated on the same
19 day as Amalie. I thought that that would not have
20 happened at Liverpool. The ward sister, who was sort of
21 one of them -- held it together with a real iron fist.
22 Q. I think we ought to say, for the transcript, when you
23 said "one of them", you clenched your fist --
24 A. There were three, they were all chopsy Liverpool girls,
25 but that was the one who was particularly in charge.
0165
1 She would take great steps to organise the care of the
2 children. Obviously parents could not be there all the
3 time and if children were going to be there 10, 11 or 12
4 weeks, as was the case with us, you would not expect the
5 parent to be there all the time. I certainly heard one
6 conversation about a little boy, the sketches of Paul
7 Broomhead in a book. She rang them up and said, "Your
8 son needs a pacemaker. Get to the hospital. It needs
9 doing now", and rang them at home. I remember that
10 conversation.
11 I can also remember a little girl called Claire
12 who was dreadful sickly -- all heart children are
13 dreadful feeders, really. Her mother, I think, had
14 a lot of other children and could not get to the
15 hospital very often, so it was arranged that Claire
16 would go to Warrington and the nurses were brought to
17 Liverpool and told how to feed her, so they could take
18 her back to Warrington and her mother could learn how to
19 start to feed her. Although there was quite a good
20 element of control there, I did --
21 THE CHAIRMAN: Mrs Shipley, you should know, by the way,
22 that Mrs Howard is from Liverpool, and is an ex-nurse
23 from Liverpool!
24 A. I love Liverpool. I had a great time there!
25 MR LANGSTAFF: That was not meant to stop you!
0166
1 A. I did not really see a great deal of the nurses. We had
2 one very brief stay at St Michael's Hill. The chap who
3 admitted her, who shot over, was doing his exam for the
4 Royal College of Surgeons the following morning.
5 "We are going to get a complex case like this. I am
6 going to admit your daughter." He wrote out the wrong
7 drugs, which the nurses did point out, and we had to
8 continue to administer our own supply.
9 The nurse who brought her back from the catheter
10 lab did not seem to realise that Amalie was very hot.
11 She said she had a temperature. I said she will have;
12 she was wrapped in a huge amount of blankets, far too
13 many. If somebody is hot, you do not cover them in
14 something, do you, you remove layers, which I did. Then
15 we left the following day.
16 At the BRI, when we first went into the ward for
17 admission, she was quite theatrical; she came from Wales
18 so she told us about Bryncethin and was chattering away,
19 quite flamboyantly dressed. As we got into the ward,
20 a nurse said "Nobody likes her". It was an odd thing to
21 say. She was the receptionist of the ward. At
22 Liverpool, the Almoner there, who had a similar role to
23 Helen Vegoda, she looked like Miss Marple but nobody
24 ever said so; they did not make observations like that.
25 I thought at Liverpool -- I am not trivialising this --
0167
1 it existed more as an organic whole, like it was a more
2 cohesive unit.
3 THE CHAIRMAN: Far from trivialising it, I think you are
4 doing a very important thing, which is humanising it.
5 MRS SHIPLEY: It was one team really, that was the
6 impression I would have from Liverpool. I think there
7 were things they could have controlled better at
8 Bristol. Certainly there was a baby in the bed next to
9 Amalie and another little girl who had been there 10
10 weeks, and the mother had two of her other children
11 staying with her. Really, they disturbed Amalie and
12 I wanted her to be in the best most rested position.
13 At night they would be jumping on her bed and all sorts
14 of things. I thought the nurses should really have
15 taken steps to control that. That is one thing
16 I thought.
17 We did not really see a lot of them, to be
18 honest. The night Amalie was in ITU, there were three
19 of them down the end of the ward watching TV. That was
20 the main ward. I can remember one sister in ITU.
21 I can't really remember a great deal about seeing a lot
22 of them --
23 MR LANGSTAFF: Can I stop you there, because we will get
24 some other perspectives.
25 Lorraine, from what you say in the statement, you
0168
1 found the nurses supportive and good.
2 MRS PENTECOST: Yes, I mean they were always there. If
3 I was upset, they would be there with a box of tissues.
4 Q. So they gave you the comfort you needed?
5 A. Yes.
6 Q. You have not a bad word to say?
7 A. Not really, no.
8 Q. Marie?
9 MS EDWARDS: At the RUH, Jazmine was put on an NG tube,
10 which was down to her stomach, to give her feeds. I was
11 still producing breast feeds but I was advised strongly
12 against doing that. They mixed up a special formula and
13 it was easier to give her medication if she had an NG
14 tube. I can remember about 10 days after she had this
15 fitted she used to try and yank it out, so we put
16 a sticky plaster to try and stop her pulling it out.
17 One particular morning she had managed to hook the
18 whole thing out. They said, "Oh, she has hooked it
19 out. We will get her a fresh one". A supply nurse from
20 Bristol came in and I went out of the room for one
21 reason or another and when I came back I could literally
22 see my daughter's forehead going grey to blue. She was
23 trying to put this NG tube down and it was not --
24 I think she got about two/two and a half inches down her
25 nostrils, at which point I snatched it out of her hand
0169
1 and said, "You are obviously doing it wrong".
2 Q. This was at Bristol?
3 A. This was at the RUH in Bath.
4 Q. What about the nurses in Bristol?
5 A. The nurses in Bristol, I have here, 6th June -- I used
6 to cross-sign all the medication because I found I could
7 not remember which of the two drugs Jazmine took. It
8 was kept in the fridge and it was particularly cold and
9 if you put that down the NG tube, it would make her
10 react, to retch. So I used to run it under the tap in
11 the actual syringe in the sterile packets, to lift the
12 medication back up to body temperature. I found a lot
13 of the time the nurses did not have time to dedicate to
14 that, so I cross-signed and made sure the medication was
15 brought up to body temperature, because she was vomiting
16 quite a lot. It scared me to think I did not know how
17 much medication was actually being absorbed.
18 In the morning, the early hours of the Wednesday,
19 I heard the medicine trolley being brought through the
20 ward. This nurse administered Jazmine's medication in
21 a matter of -- it could not have been longer than three
22 minutes. For me it is usually closer to 10 by the time
23 I have filled the syringes and warmed one of them and
24 pushed it down slowly so it did not hit the stomach and
25 make her retch. I heard the trolley go away and I could
0170
1 hear Jazmine really struggling; she was retching.
2 I could see she had been placed on her back, which
3 really puzzled me. I remember hitting the emergency
4 sirens to bring the nurses back as soon as possible
5 because I was fearing from the colour she was going that
6 she was going to have another heart attack. As she was
7 being sick the NG tube was coming out and going back in.
8 This nurse came in with the sister and I said
9 "What is going on? Why was she left in her back?"
10 In 1993 it was on your side. Jazmine could not sleep on
11 her front because of her heart complaint; she did not
12 find it comfortable. The sister actually informed me
13 that my daughter was in the cot death research. I said
14 who had given her permission to be in a cot death
15 research when she is very very sick? She said, "All the
16 babies are here and it is Dr Joffe who has given
17 permission". I demanded to see him as soon as
18 possible. They explained to me that he had worked to
19 the early hours and they would get him to see me.
20 Q. You spoke to Dr Joffe about the fact that your daughter
21 had been used for cot death research, and turned on
22 her back in a way you would not have otherwise expected?
23 A. No.
24 Q. Without your knowing or without your consenting?
25 A. She was being placed at risk in my eyes, unnecessary
0171
1 risk. Why was she involved in research when she was --
2 Q. What explanation did you get?
3 A. Dr Joffe explained that whilst Jazmine and the other
4 babies are on this ward, he is guardian, and basically,
5 if he wants them on the cot death research, that is what
6 he was going to do. I was really shocked and I said
7 I do not want her to be researched on. You cannot give
8 me any guarantees of what would happen to her health if
9 she did not react by turning her head when she threw
10 up. Would she have asphyxiated? You do not know. That
11 is what you are researching.
12 Q. His reaction to your saying you do not want this was
13 what?
14 A. Fair enough, we will remove Jazmine. That was all that
15 was said about it. But I was horrified to hear that
16 sickly children were being used.
17 Q. John, the nursing?
18 MR MALLONE: I found the nurses were extremely sensitive and
19 thoughtful to me all the time. Initially I do not think
20 they were quite sure how to react to us. We were both
21 staying in the hostel which is immediately adjacent to
22 the ITU ward in the Children's Hospital, so we were
23 there perhaps 20 hours a day or something, by Josie's
24 cot. They made every effort to involve us in her care
25 which --
0172
1 Q. Did you find that helpful?
2 A. I found it distressing at first because she had been
3 paralysed. You had to press on her abdomen in order for
4 her to urinate; she could not pass water otherwise.
5 I found that quite distressful, but I soon got used to
6 that.
7 Q. There was no catheter?
8 A. There was no catheter, no. We were encouraged to touch
9 her, to handle her, I think they thought it would both
10 involve us and help her. We gave her her feeds through
11 a tube.
12 Q. You had the sense that the policy was actually to
13 involve you, and this was why they wanted --
14 A. I think so, yes, and once I had overcome my initial
15 reluctance to do that, I was very grateful. I wanted to
16 be looking after my daughter, and so did my wife.
17 Q. Perhaps with the benefit of looking back at it, would
18 you rather have been involved in some way, such as you
19 were, or would you rather have been a bystander with
20 your child, watching the nurses do everything?
21 A. No, I wanted to be involved. I was glad I was
22 involved. They did not pressurise us to do it, they
23 said, "Would you like to?"
24 Q. It was encouraged --
25 A. It was encouraged. It was two or three days before
0173
1 I felt happy to do it and I thought they were very
2 sensitive about it at all.
3 Q. This morning there was something of a suggestion that
4 there may have been an encouragement of parents to take
5 charge of some of the care of their child in order to
6 make up for shortcomings in the staffing or in the
7 quality level of the staffing, the expert nurses, the
8 regular experts dealing with more serious cases, for
9 instance, whereas another child on the ITU having the
10 bank nurse, not so serious, something along those
11 lines. Did you get any sense of that?
12 A. No sense of that whatsoever, no. We were not there all
13 the time, you know, we had to go out and have meals
14 sometimes, tend to our bodily functions, and there was
15 no question that the nurses were there to do that job.
16 But if we wanted to help, we were very welcome to do
17 so. I sometimes wondered whether we might have been
18 intruding. If we had not been there they might have
19 been having a private conversation or something,
20 lightening their working day or something, but we were
21 there practically all the time and we were not made to
22 feel unwelcome.
23 Q. I am not sure how far, Marie, you take a different view
24 of the nurses as a whole. The episode with the tube is
25 one thing, but the other matter you complained of is
0174
1 really Dr Joffe's organisation of the ward?
2 MS EDWARDS: I understand the nurses were only doing as they
3 had been asked to, by my problem was that they were
4 administering my daughter's medication without my
5 cross-signature, which I had instigated early on in my
6 arrival at Bristol Children's, otherwise I would see my
7 daughter positing it, or if not, projectile vomiting,
8 because it was done too quickly.
9 Q. This was something where you had specifically asked for
10 something for your daughter and they were not making the
11 specific adjustments to their routine for you?
12 A. This particular nurse at night-time, yes. Overall they
13 are obviously very busy, but I had no real problems with
14 them other than Dr Joffe explaining to one or two of the
15 sisters that my challenging, actually getting media
16 involved, fund-raising, the relationship was a bit taut
17 after, the suggestion that the Bristol Children's
18 Hospital steps would be covered with media because of
19 me, which is fair enough.
20 Q. Anne, how did you find the nursing?
21 MRS WAITE: In the daytime Caroline used to attend the
22 nursery section on Ward 5 at the BRI. We were
23 encouraged to leave her and go walking around, have
24 a look around town, you know, leave it to them really to
25 look after. I remember one day before the operation we
0175
1 left her with them and we came back and she had drunk
2 half a tube of liquid bubbles. We got quite upset about
3 that because, you know, she was sick.
4 Other than that, when she was on BRI Ward 5,
5 intensive care, we felt as though we were intruding.
6 We were encouraged to talk to her, but every time she
7 got agitated we were told, "We will have to sedate her
8 again because obviously she is getting agitated". You
9 did not really know what to do. We were encouraged to
10 be there, but at the same time she was being sedated
11 every time, we sort of distressed her.
12 Q. Were you able to form a view as to the difference
13 between the Children's Hospital and Ward 5, and were you
14 affected by the change from one to the other?
15 A. We went to the Bristol Children's Hospital with Caroline
16 for a catheter. We actually stayed on the night because
17 of the distance from Newport to Bristol. They were not
18 very happy with us because she slept with us. As she
19 was only two, our first child, we thought she would
20 rather sleep with us, because obviously it is an ordeal
21 for a child to go through. We were worried also. So we
22 were given a room with a mattress on the floor to sleep
23 on, and that was where Caroline stayed with us. During
24 the night then they were not very happy because they
25 tried to keep her in the children's ward, but she was
0176
1 not having it. She tried to come in with us and
2 therefore she slept on the floor, on a mattress.
3 She had a pre-med the morning and was sent down for the
4 catheter.
5 Q. When you say, "They were not very happy with us at the
6 Children's Hospital", this is because of that particular
7 incident?
8 A. That is right.
9 Q. You did not really form an impression --
10 A. I do not think we were there long enough, really, but
11 they were not very happy with us, I think.
12 Q. Again, dealing with comparisons, you, Philippa, I think
13 were able to form a comparison between the intensive
14 care post-operatively and the condition of the children
15 post-operatively?
16 MRS SHIPLEY: On that last subject, there is one thing
17 I wanted to say. One of the things I did notice at
18 Liverpool, an awful lot of the staff, the doctors, the
19 nurses, the staff handled the children, picked them up
20 a lot. It was not just the nurses. They would
21 obviously sit and feed them and give them cuddles and
22 things, but Dr Vicars -- I submitted a photograph of him
23 with Amalie -- picked Amalie up every time he was on the
24 ward and had a chat with her. The American female
25 surgeon, who is on another photograph, I have seen her
0177
1 dressing children and talking to them and things. There
2 was quite a lot of involvement with the children, from
3 all the staff then. That was on that point.
4 Q. I was saying the comparison post-operatively, the
5 condition so far as you could tell it of the children,
6 Liverpool on the one hand, Bristol on the other?
7 A. Nothing prepared me -- I had seen closed and open heart
8 surgery cases, a lot of them, on the ward and in ITU at
9 Liverpool, but nothing prepared me for the sight of
10 Amalie after her operation, the BRI, nothing.
11 Q. Not having seen children on ICU in Liverpool?
12 A. She did not look anything like they did. What I saw,
13 Mr Dhasmana mentioned after he came back from operating,
14 and it would probably be about 10.00 in the evening.
15 Amalie was a dusky pink colour and a little bloated and
16 when I went in to the ITU unit, and I stopped as I got
17 through the door because when I say -- I almost left
18 this out of my statement because you might think it was
19 hysterical really, when I say I have never seen anything
20 like it, that is exactly it, I have never seen anything
21 like it. Her body was enormously bloated, she was
22 a livid yellow and pink colour, there was blood on her
23 chest, in her hair, the wound was not covered up very
24 adequately and there were two buckets of blood under the
25 bed. That is what I saw -- I was trying to take it in
0178
1 really, and she did not look cared for, it did not look
2 -- not to have cleaned her up properly after an
3 operation and cleaned her hair. She did not look cared
4 for.
5 To see those conditions, I mean Amalie looked like
6 a victim, as if we were in Kosovo in a field hospital
7 and this had been the victim of a massacre, then you
8 would have said, "Oh, yes, that field hospital --" what
9 you would have thought you were seeing, what I saw would
10 have told me that was a hospital coping at the limits of
11 its resources, like an army field hospital or something,
12 it was shocking.
13 The comparison -- I had never seen a child look
14 like that. I never saw one bloated, distended. I have
15 explained the geography of the ITU unit which is half
16 timber, half glass. Basically you could see every child
17 and the girl in the next cubicle to Amalie was 18
18 months/2 years old: very, very ill, critically ill.
19 I can remember, I was not staring, but as you glanced
20 over when you looked in her face there were dark shadows
21 in the planes of her face but her body was a normal
22 colour and she was not bloated and she was clean and
23 cared for, it was a completely different thing. I was
24 very, very shocked at that.
25 Q. John, you had a chance to see the Intensive Care Unit
0179
1 for some days?
2 MR MALLONE: Five weeks.
3 Q. What can you tell us about your perception of it?
4 A. What particular aspect are you thinking of?
5 Q. I think you found, did you, that there was the
6 inconsistent treatment of Josie's condition?
7 A. Yes, I felt there was tremendous continuity in the
8 nurses because they work 8-hour shifts, do they not, and
9 so they got to know us and they got to know their
10 patients, the children who were in there, they treated
11 them as human beings. I found the doctors, they would
12 come round perhaps on a 10-minute ward round twice a day
13 and I always had the impression that they did not see
14 the children, the babies, as human beings, more just as
15 anatomical problems that had to be solved. For example
16 at one stage Josie's weight ballooned enormously, she
17 went up over 3 kilograms and then came down, she lost
18 almost 50 per cent of her body weight in 24 hours at one
19 point simply because she had been too heavy before, I do
20 not know, there was a problem controlling her fluid.
21 They talked about it as a chemical imbalance problem.
22 Q. You are reflecting something of what Philippa has said
23 in terms of the fluid management, I think.
24 A. Yes, she was incredibly bloated but, again, they were
25 reassuring about that, they said "We are used to dealing
0180
1 with this [this was the chylothorax she had]. We are
2 used to seeing this, we know how to treat it". It did
3 not seem that they did because it did not actually get
4 any better.
5 The example that shocked me most was one day, the
6 date is in my statement and I cannot remember it, about
7 3 weeks into her stay in ITU I think, a doctor who we
8 had never seen before, a middle-aged man, came and
9 introduced himself, I cannot remember his name, and said
10 he was a consultant and went straight over to Josie's
11 ventilator and said "That looks a bit low" and turned it
12 up, almost doubled the pressure and increased the
13 frequency by 50 per cent I think as well.
14 The following morning she had a punctured lung.
15 That was the thing that staggered me most. He just
16 seemed to walk straight into the ward without consulting
17 any notes or talking to anybody whatsoever, I still have
18 no idea who he was, and just interfere with the
19 treatment of a child who had been on quite a continuous
20 routine for something like three weeks post-operatively
21 at that stage I think.
22 Q. Who had been looking after the child, who had been in
23 charge as you saw it in a practical sense until then?
24 A. In the practical sense Dr Martin, he was the one who we
25 saw most often and he would tell us that he had
0181
1 consulted Mr Wisheart about certain things and we also
2 saw Mr Wisheart from time to time, but on a daily basis
3 it was Dr Martin who was saying what treatment would be
4 followed for that day. I am sure you are aware there
5 are big wall charts that operate for 24 hours and when
6 they would come round in the morning they would look at
7 what had happened in the previous 24 hours and it would
8 be Dr Martin who would say "Okay, I think we ought to do
9 this for the next 12 hours", until the next ward round
10 and so on.
11 Q. This other doctor was interfering in Dr Martin's
12 arrangements?
13 A. So far as I know he acted entirely on his own
14 initiative. I think they were shocked when she
15 developed this pneumothorax I think they called it,
16 punctured lung anyway.
17 Q. What sense did you have of the treatment strategy being
18 co-ordinated and organised, in a coherent sense?
19 A. Apart from that one incident it seemed to be very
20 methodical, that the doctors would meet with the nurses
21 and the nurses would say what had happened to Josie
22 since they had last seen them and they would look at the
23 charts and they would look at the notes hanging on the
24 end of her cot and then they would talk about it for
25 a bit and then they would say "I think we ought to do
0182
1 this", it seemed to have a method to it, it seemed to be
2 well organised.
3 Q. Did you have different doctors coming round at different
4 times; you have mentioned two ward rounds?
5 A. I do not know, I cannot remember what their particular
6 working hours might have been, but the person who seemed
7 to be in overall charge was Dr Martin.
8 Q. This was at the BRI or BCH?
9 A. The BCH, she was never at the BRI, she was in the
10 maternity hospital, travelled across the road to the
11 children's hospital and never went anywhere else.
12 Sorry, I do not know whether you want me to
13 mention at this stage --
14 Q. The incident with the power cut were you going to go on
15 to?
16 THE CHAIRMAN: Take your own prompt Mr Mallone, do not take
17 Mr Langstaff's.
18 MR LANGSTAFF: It speaks for itself. We have had
19 a statement from the Trust.
20 MR MALLONE: I wondered if you wanted me to mention about
21 when Dr Joffe told us there was nothing more they could
22 do for her. Have we reached that point yet?
23 Q. By all means tell us if you wish to; if you do not wish
24 to it is in your statement.
25 A. No, I do wish to, I think it is very important. On
0183
1 22nd December, just before Christmas, Dr Joffe in the
2 presence of one of the Sisters, Bridget, I do not
3 remember her surname, told us they had reached the end
4 of the line, that the law of diminishing returns had set
5 in. In other words there was nothing more they could do
6 for Josie. He asked whether there was anybody wanted to
7 see her before the end, had we taken any photographs,
8 were there any special clothes we wanted her to wear, in
9 other words she was going to die shortly and we should
10 prepare ourselves for that.
11 Somebody else I can remember saying that Dr Joffe
12 was very brutal in saying that a child was going to
13 die. I found him actually the most human of any of the
14 doctors that we met and I found the way in which he
15 broke this news to us, I think it was done very
16 sensitively, I thought he came across as a very caring
17 human being and I did not feel it was done brutally at
18 all. The shock came when at the end of the conversation
19 he said "I will go off and talk to Mr Wisheart about
20 it", the shock came when we were then told, after they
21 had had a discussion about it for over an hour at which
22 I could hear Dr Joffe arguing strongly that she ought to
23 be allowed to die, the shock came when Mr Wisheart said
24 he wanted to continue treatment.
25 I found it appalling that we could have been told
0184
1 "There is nothing more we can do for her" and then
2 a matter of hours later being told "We can go on and do
3 this, this and that". I think they should have got
4 their story straight before they spoke to us.
5 Q. Do you have a feeling as to why treatment was continued?
6 A. I do not know why treatment was continued. I guess
7 Mr Wisheart may have felt some kind of sense of his own
8 pride in his work perhaps that he did not want to have
9 this child die if he thought she could survive, I can
10 understand that.
11 What I do not understand is why, after having said
12 "We can continue treating her", another two weeks later
13 when nothing had changed in her condition whatsoever, at
14 that point we were told if we wanted to, we could take
15 her off the ventilator now and let her die.
16 THE CHAIRMAN: When you say "get their story straight",
17 I think what you mean is, tell me if I am wrong, you
18 found it very unhelpful for you to be as it were the
19 recipient of different messages without the doctors
20 having decided beforehand or with you --
21 A. Absolutely, when one of them says "Your daughter is
22 about to die" and the other one is saying "No, she is
23 not", I felt they should have spoken to one another
24 beforehand.
25 THE CHAIRMAN: It would be hard to imagine a more difficult
0185
1 roller-coaster to ride than that.
2 MR LANGSTAFF: Talking, as this letter leads into, the
3 question of the approach and support and sensitivity
4 with which the hospital dealt with parents of patients,
5 beginning to look now at that which was available at the
6 time of bereavement or when bereavement may have seemed
7 particularly imminent, apart from the failure to
8 communicate one with the other that you have described,
9 the emotional roller-coaster, what do you say about the
10 way in which you were or were not supported by the
11 hospital?
12 A. After Josie's death?
13 Q. Yes.
14 A. Immediately after Josie's death we were treated very
15 very well indeed by the nursing staff. One of the
16 nurses helped us wash Josie and dress her and take
17 photographs and footprints and so on and there was
18 a little room in which we did that totally privately and
19 it was clear we had so long as we wanted to be with our
20 child, and I do not know how long it was before we
21 finally took her down to the -- they call it the Chapel,
22 the bit next to the mortuary, and left her in the
23 hospital, it was at least two hours I think.
24 Q. You valued having the time?
25 A. I certainly did, I certainly did.
0186
1 Q. Did Helen Vegoda play any part in that?
2 A. No, no, she did not, but at some stage in that process
3 Dr Martin came and certified that she was dead, and that
4 was the most awful part of it, to be honest. He told us
5 that the Coroner had already been informed and that
6 a postmortem is to take place, which in retrospect seems
7 a very peculiar thing. He had already informed the
8 Coroner before certifying that she was dead, it seemed
9 to be the wrong way round and we argued very strongly
10 that we did not want her to have a postmortem, she had
11 never been out of the hospital, they knew exactly why
12 she had died and he said there had to be, it was a legal
13 requirement to protect patients. This seemed to be so
14 abhorrent to us, we did not want our daughter mucked
15 around with any more. He assured us she would still
16 just look the same, she would be "the same old Josie" is
17 what he said. There was never any suggestion that bits
18 of her were going to be kept afterwards, or even
19 removed.
20 I feel we were absolutely deceived by Dr Martin in
21 that conversation and it was a very stressful thing.
22 When your child has just died, to be told that she is
23 going to be cut open against your wishes and to be told
24 that that is the law and there is nothing you can do
25 about it, we both found that unbearable.
0187
1 I also understand since that if he had merely
2 informed the Coroner of the cause of death, that most
3 likely the Coroner would have accepted that and would
4 not have even asked for a postmortem.
5 Q. You felt deceived, I think, because in part he had told
6 you that you would see Josie as not looking any
7 different; indeed, you did see her not looking any
8 different?
9 A. We did for several days. She died --
10 Q. You thought that was postmortem?
11 A. She died on Friday and we were told the postmortem would
12 be on Monday and we visited her every day in the
13 hospital and she still looked just the same and she
14 still looked just the same on the Monday and so we
15 assumed she had had the postmortem and Dr Martin had
16 been right, but in fact the postmortem did not take
17 place then until the following day and we were very
18 shocked when we saw her because she looked totally
19 different. She had different clothes on then, they
20 dressed her in somebody else's clothes and there was
21 quite a bit of blood on her face, and she did not look
22 the same at all, the face, the features had changed. At
23 that stage of course we had no idea that she was not
24 a complete baby.
25 Q. Marie, you have I think rather different experiences of
0188
1 how things were dealt with because you have a complaint
2 that you did not have time?
3 MS EDWARDS: I was talking to Dhasmana then all of a sudden,
4 this is at the Bristol Royal Infirmary, and he came to
5 talk to us with the nurse to say that they have managed
6 to stabilise Jazmine and she is in the intensive care
7 and all the time I could hear this adult male screaming,
8 which really distressed me and the only thing my
9 daughter had in the way of senses was a sense of hearing
10 and all she could hear was this man screaming because
11 they shared the intensive care ward with the babies and
12 the adults.
13 Dhasmana was called off to intensive care. I did
14 not know who he was attending at that point until the
15 nurse came back and said "Yes, it was Jazmine, she is
16 having difficulties". Dhasmana had actually done
17 external hands/chest massage for 15 minutes and then he
18 opened her up in intensive care and worked on her
19 hand/heart for another 15 minutes after that, so for
20 three quarters of an hour he worked on her.
21 Then I had the nurse come back and say that "It is
22 not looking good at the moment".
23 Q. Can I move on a little: you saw Helen Stratton soon
24 after that I think?
25 A. Yes.
0189
1 Q. This was after you knew that Jazmine had died. You had
2 Jazmine I think to hold?
3 A. Yes.
4 Q. You were given a photograph, I think a Polaroid
5 photograph?
6 A. I was, because it scared me to think that they were
7 going to bring her in to me and I really freaked out at
8 the thought of them presenting me with a dead baby, let
9 alone my own. So Helen Vegoda actually gave me
10 a photograph of Jazmine and she looked really peaceful.
11 Q. Helen Vegoda or Helen Stratton?
12 A. Sorry, Helen Stratton.
13 Q. Did you welcome the photograph, having got it, or not?
14 A. I did, yes, but it did not look very much like Jazmine
15 so I needed to see her. It did not look very much like
16 Jazmine, being a Polaroid as well, the colour was really
17 poor, which made my mind up that I needed to see her.
18 She said to me "Do you want her brought in by the
19 nurse in a shawl or in a Moses basket?" and by the time
20 I had actually decided that I wanted to see her I felt
21 the compulsion --
22 Q. Give us the details if you want, but you may prefer
23 simply to answer some questions "Yes" or "No" if you
24 like.
25 A. They brought her in a shawl. We spent about an hour, an
0190
1 hour and a half with her and the last half an hour I had
2 Helen Stratton coming in, asking that she thought it was
3 enough time now and she would bring a nurse in to
4 actually take Jazmine away from me, and I had actually
5 said to her "I need more time" and she said "Okay, but
6 I actually finished work at 7.00" and I said "Yes, but
7 I really need some more time" and she said to me "I will
8 ask the nurse to come in in 15 minutes, will that be
9 enough?" and I said "I do not know, but I do not think
10 so" and with that I said to Helen "Would it be possible
11 to take Jazmine down to the Chapel of Rest?" "Well, she
12 is not going there", she said. I said "Fine, can I take
13 her to the morgue?" I needed to know where she was
14 going to be laid to rest. She said, no, that was not
15 possible. She said "No-one is allowed to go down
16 there". I said "Fine". The whole time Jazmine was in
17 hospital I knew where she was, in the theatre, in an
18 anaesthetic room, I knew where she was and the thought
19 of leaving her and not knowing where she was really
20 upset me. With that, my partner said "It is hospital
21 rules, just let it go". So I said, "Fair enough, I know
22 that she will be on this side of the building". About
23 20 minutes later, that would have been about 7.20, she
24 brought a nurse in -- she said "I am going to go and get
25 a nurse now" and I actually walked over to Helen
0191
1 Stratton.
2 Q. She was rushing you?
3 A. Yes, she was.
4 Q. And you did not want to be rushed?
5 A. No.
6 Q. And you describe in your statement what then happened
7 and how you --
8 A. I actually handed Jazmine over to Helen Stratton knowing
9 that she had never held a dead body, a dead baby, but
10 I felt compelled in doing that so she would never bully
11 another parent into handing their child over when they
12 are clearly not ready to let go.
13 Q. Because you felt angry with her or bitter, or --
14 A. Frustrated that I had to give up this last moment with
15 my daughter.
16 Q. We will deal with the questions of the postmortem later,
17 shall we?
18 A. Yes, thank you.
19 Q. Do you have anything to say about the way in which you
20 were supported or not at the time of death?
21 MRS SHIPLEY: We had seen Mr Dhasmana, he was by her bed in
22 the morning, that would have been about 9.00, 9.30 and
23 he said she had stopped getting any worse and he felt
24 things could improve from here on in, perhaps that was
25 like the curve, and he said "Go and get something to
0192
1 eat".
2 So we went off to the hospital canteen and I do
3 not think we had been in there 10 minutes and I had the
4 most awful feeling, you know, they say somebody walks
5 over your grave, I just had that feeling, and we went
6 straight back to the ward and her heart had gone into
7 arrest and the nursing staff said "You had better ring
8 your parents", which we did. Then we hung around
9 really, it takes as long as it takes, you know, to when
10 they try and revive them.
11 Then Mr Dhasmana, we went to see him, he came out
12 of ITU. He explained that she was dying and he started
13 to explain, I think it must have been why she was
14 dying. We sat there and time was running on. I said
15 "Look, I want to be with her then if she is dying".
16 When we got there the heart -- you know, when it has
17 virtually stopped beating and it is just 1 beat and 20
18 seconds, there is another beat, it is stopping
19 virtually, is it not? So she had died really by the
20 time we got there and we did not have long with her.
21 I do not think we were encouraged to stay.
22 Q. Did you feel rushed out?
23 A. I think they told us to go for a walk and I think they
24 wanted to take the body off somewhere. Obviously we
25 were in an absolutely poleaxed state at that point, are
0193
1 you not? I think we sat with her, but it was not a long
2 time, it might have been 15, 20 minutes, that would be
3 maximum.
4 Like they said, you do not know what to do, do
5 you? Our parents were travelling, they lived in the
6 north so we obviously had to wait at the hospital.
7 I think we went out for a walk and then we hung around
8 and of course the train was delayed so when my parents
9 eventually got there they did take us down, it was the
10 ITU Sister from the night before, who must have been on
11 duty the Thursday and the Friday night, took us down to
12 the Chapel to see her there. That was the only two
13 times we saw her there.
14 Q. Lorraine, were you rushed through, did you have enough
15 time?
16 MRS PENTECOST: I had a telephone call to say something like
17 Luke was slipping away. I went to over Bristol and when
18 I walked into ITU his cot was empty and they were
19 washing down a mattress.
20 I asked them where he was and the nurse said "Oh,
21 he has gone, he went a few moments ago" and I said
22 "I know because I felt it". She took me into a side
23 room and she said "If you unwrap him and look at him,
24 you will notice an extra plaster on his heel". I said
25 with everything else I was not going to notice
0194
1 a pinprick. Then she left me and she came back in about
2 10 minutes later and she showed my dad where we were.
3 About an hour later my husband came over with my
4 mother and we were asked if we wanted a cup of tea.
5 About half an hour after that we left, but we were not
6 rushed, we never saw anybody to rush us.
7 Q. Anne, were you rushed, did you have any sense of rush or
8 not?
9 MRS WAITE: No, we were rung at 6.00, we were staying behind
10 at the hospital at the BRI in Carolina House. We were
11 rung to say that Caroline's blood pressure had dropped
12 dangerously low, there was not much time, could we get
13 over there as quickly as possible. We rushed over
14 there, we were put in a room with a fish tank, I think
15 it was an Italian there, I cannot remember who it was
16 came to see us, I think it was a nurse came to see us.
17 She said "She is in a bad way, we are doing
18 internal cardiac massage, we do not know how long she
19 has left", if she was going to stay alive. We were left
20 again for a while and the next thing, we saw
21 Mr Dhasmana. He came out, theatre cap on, gown on,
22 covered in blood. "I am sorry", he said "she is dead".
23 He said "I tried everything, I did everything I could,
24 we could not revive her".
25 We then were taken to a room while she was being
0195
1 cleaned up because we wanted to see her. We had offered
2 her organs to transplantation but due to the drugs she
3 was taking they were unable to be transplanted, he told
4 us.
5 He also told us there would be a postmortem by the
6 Coroner's request. We also were in favour of that
7 because we wanted to know why she died because we were
8 not given any answers.
9 Q. You say you felt bitter, you and your husband really?
10 A. Very bitter.
11 Q. You felt things had not turned out at all as you had
12 expected?
13 A. That is right. Once you are given a 5 per cent risk,
14 you think it cannot happen. It is an eventual situation
15 that probably does not happen anyway. You are in pretty
16 high spirits, you are given a 95 per cent chance of
17 everything going right and then suddenly you are one of
18 that 5 per cent that go wrong.
19 It has put me in a position where I cannot trust
20 doctors any more, it has completely dashed my faith in
21 doctors, I could not trust any of them with my other
22 three children. If they had to go into hospital now
23 I do not know what I would do.
24 Q. It comes back, does it -- I am going to come back to it
25 in a moment, which is the question of how the risks and
0196
1 consent ought to be explained and what lessons we can
2 learn from your experiences to help others in the
3 future. I will come back to that in a moment.
4 You are going to tell us that afterwards --
5 A. We were taken to a room where we telephoned our parents
6 back in Newport to say Caroline had died and could they
7 come up as soon as possible for a visit because that is
8 the last time they would probably see her. We were left
9 about an hour and a half with constant pots of tea and
10 pats on the back, sort of thing.
11 We went to see Caroline after she had been cleaned
12 up. She was still in a bad way, she was still attached
13 to tubes, she still had a tap on her hip into the
14 femoral artery -- she had no catheter in. She had dried
15 blood around her nose, quite a nasty state to look at.
16 She was very blue and when I actually picked her up then
17 she actually passed urine all over me which I found very
18 distressing. You do not expect that to happen, you
19 know, you expect the bodily fluids to be out of the body
20 by that time. She had been dead for about 1 hour and
21 a half, somewhere round then. But we were left with
22 her, yes, on the ward with the curtains drawn around
23 until we were ready for our parents to come over and see
24 her and then we left.
25 Q. You felt you had a chance to say goodbye properly?
0197
1 A. Yes, but I did ask could we come back up to Bristol and
2 see her because obviously I did not want to say goodbye
3 at that point, I wanted to see her later on in the day,
4 you know, and maybe the next day. We were told not to
5 go down to the morgue because it was a nasty place, very
6 dark place, very creepy, "you do not want to go down
7 there", you know, "remember her as she was and see her
8 back in Newport when she comes back home".
9 Unfortunately when she got back to Newport she was not
10 in the same state. Obviously travelling makes
11 a difference to a body and she was bruised, very bruised
12 on the head. It did not feel like the same child as
13 I left in that bed.
14 Q. When you say "feel", you held her?
15 A. Yes, I held her until she actually developed
16 rigor mortis, I could not let her go.
17 The last memory we have of Caroline is in
18 a coffin, a massive bruise on her forehead and
19 a soft-feeling chest, which we could not understand,
20 a crinkly sort of material underneath which felt to me
21 like a dressing and padding.
22 Q. You did not know, I think until very recently, February
23 of this year, that Caroline had been buried without
24 a number of her internal organs?
25 A. That is right. She had quite a lot of her organs taken
0198
1 unknown to us. She was buried without her heart, part
2 of her lungs, liver, kidneys and her spleen. I knew she
3 had polysplenias syndrome, it was stated on the death
4 certificate and I thought they might have retained that,
5 but I did not possibly think they could retain all
6 that.
7 Q. I will talk in a moment with each of you about the
8 question of tissue retention. Just on the question of
9 bereavement, what happened afterwards, John, you went
10 back on a number of occasions and you had been in the
11 Bristol Children's Hospital intensive care for 5 weeks.
12 You were invited back by Helen Vegoda to a remembrance
13 memorial service?
14 MR MALLONE: Yes. That was some time later, I think it was
15 over a year later she organised the memorial service.
16 Q. Was it helpful?
17 A. It worked in two ways: it helped with my grieving
18 I think. It also was a bit of a shock to see how many
19 people were there. I do not know why I thought we were
20 the only ones to have lost a child, I cannot have
21 thought that because several others died while we were
22 in the Intensive Care Unit, there was something like 50
23 or 60 groups of parents there.
24 Q. Was it helpful to know you were not alone or --
25 A. Yes, it was. It was a mixture of things, it brought
0199
1 things back that were very sad but I also felt it was
2 part of recognition and an act of remembrance, I did not
3 want to forget my daughter, it was a way of remembering
4 her.
5 Q. Marie, you were never asked I think to attend -- you
6 never knew of the service?
7 MS EDWARDS: I did not, I only just heard about it
8 recently, yes.
9 Q. Do you think you would have gone if you had known?
10 A. No.
11 Q. Do you think that approach would have been helpful for
12 you?
13 A. No.
14 Q. Other views, Lorraine, Philippa?
15 MRS PENTECOST: I would not have gone.
16 MRS SHIPLEY: I was not invited, but I would not have gone
17 anyway. On the point John just made about a lot of
18 children, a few children died whilst you were there in
19 that 6-week period. I would like to say in that three
20 month period I was at Liverpool, I cannot remember
21 a single child dying during that period.
22 Q. A couple of things before we deal finally with the issue
23 of tissue retention. We have spoken quite a lot about
24 the way in which consent was taken from you. I want to
25 ask each of you really, or collectively, how you think
0200
1 the system that you experienced could be improved so
2 others in the future will not have to go through the
3 various experiences that you have described and found
4 uncomfortable or unpleasant; what can be done as you see
5 it to improve the process?
6 MS EDWARDS: Listen to the parents, listen for their needs.
7 Q. That is this, in four words: "listen to the parents"?
8 A. In some respect, yes, in some areas of being able to
9 help.
10 Q. John?
11 MR MALLONE: If I can split it into two: over the question
12 of whether there should be a postmortem, I do not think
13 that should be carried out against the wish of parents.
14 If parents are happy they understand why the child has
15 died, they feel it has been satisfactorily explained to
16 them, that seems to be enough to me. If somebody is
17 under the care of a doctor, a postmortem is not an
18 automatic requirement, is it? It is only if the doctor
19 has asked the Coroner for that to happen.
20 Q. Anything else in terms of consent either for the
21 operation or for postmortem you want to say, briefly?
22 A. I think consent for the operation has to be fully
23 informed consent and if, as I hope will happen, surgeons
24 are going to be made to say what their percentage
25 success rates are, then that should be part of that
0201
1 informed consent.
2 Q. In writing as well as orally?
3 A. Yes, certainly.
4 Q. Philippa?
5 MRS SHIPLEY: I think it should be informed consent.
6 I think Liverpool had quite a good approach in both the
7 way they dealt with you, spoke to you --
8 Q. You suggested writing and also something graphic, what
9 you were saying earlier?
10 A. I do not think there is any harm -- you mean photographs
11 and things?
12 Q. Yes.
13 A. They had what they call teaching photographs. They were
14 shown --
15 Q. Preparation for the shock of seeing the ITU would best
16 be done by video or photographs or seeing it?
17 A. If it was me, if somebody handed me a video I probably
18 would not watch it. If somebody showed photographs and
19 showed what they were going to do, that would be more
20 instant and I could live with that, that would be
21 better.
22 I do think you should be fully informed. Like
23 when I spoke to Mr Dhasmana in the corridor after Amalie
24 had died, when we were still waiting for my parents at
25 about 7 in the evening, he walked over and said "Amalie
0202
1 would never have been able to run and play like other
2 children, she would not have been as strong as them" and
3 went on to say there was significant evidence that the
4 Fontan operation caused chronic damage to the liver and
5 she may have needed a transplant when she was 13.
6 I should certainly have known about the liver damage
7 prior to that operation and I still cannot understand
8 what was the point of doing the operation if it was not
9 going to improve her quality of life.
10 Q. Moving forward --
11 MR MALLONE: Can I add something?
12 Q. Yes.
13 A. I think the more channels of communication you use to
14 inform one the better the information is going to be
15 received, understood. Somebody mentioned a video
16 earlier, book, diagram, face-to-face contact, to
17 reinforce one another. There is no ideal method, you
18 need to have them all.
19 Q. This is the final topic we have to discuss. When it
20 comes to the question of postmortem and retention of
21 tissue, all of you I think were horrified and upset by
22 what had happened; is there anyone who is not or was
23 not?
24 MRS SHIPLEY: I can understand why they have to do
25 a postmortem. I thought it was if you died without
0203
1 regaining consciousness after an operation. I do not
2 have a problem with the postmortem. I have a problem
3 with them removing tissue without my consent.
4 MS EDWARDS: It is theft really, not informing us. You
5 know, you lay your child to rest, you want a performed
6 burial or committal, but at the end of the day when you
7 find out, in some cases with some parents years later,
8 it is devastating, that is the only word to describe it,
9 devastating.
10 MRS SHIPLEY: I was also concerned that the pathologists
11 acted as they saw fit, did they not, because some organs
12 are still there at the hospital and Amalie was disposed
13 of, Amalie was disposed of in 1989.
14 MS EDWARDS: On this subject, I read up on some of the
15 transcripts and I read that Paul Forrest, the Coroner,
16 said that he was not aware that any of the hearts had
17 been removed. I know for a fact he did know back in
18 1993, my daughter's Coroner's Inquiry which I had
19 instructed. So the man has lied and I would like the
20 Inquiry to know the situation there because I had
21 actually questioned the pathologist on the reasons why
22 he removed my daughter's heart and he said it was the --
23 Q. Human Tissue Act?
24 A. -- the Human Tissue Act that gave him permission or the
25 law for him to do that.
0204
1 Q. If he is relying on the Human Tissue Act, give me
2 a "Yes" or "No" to this, had you signed any form of
3 consent for the retention of tissue after postmortem?
4 A. No.
5 Q. Lorraine, you want to say something about tissue
6 generally. What I propose to do is ask each of you
7 generally to add anything you want to say to what you
8 have already said. Unless anybody particularly wants to
9 add to the tissue discussion, I think we are all agreed
10 in evidence as to what you feel about it and what ought
11 to be done about it. Lorraine?
12 MRS PENTECOST: In February I received a letter from the
13 UBHT telling me that they had my son's brain, heart and
14 liver. Previous to the letter arriving I had had
15 a telephone call from the UBHT telling me that they had
16 my son's heart, brain and lungs.
17 When I questioned the difference between the
18 telephone call and the letter I was told there was
19 absolutely no way that type of mistake could be made,
20 that the records had been checked, checked, and
21 rechecked and it just was not possible.
22 In September I was talking to Mr Barrington on the
23 telephone and he told me they had had further
24 retentions. When I asked him whether they had my son's
25 lungs he would not admit it without the paperwork in
0205
1 front of him and he just said "Well, you know".
2 On the Monday I had a letter saying they had kept
3 Luke's brain, heart, lungs, liver, kidney, spleen and
4 stomach.
5 What annoys me most was, apart from the fact that
6 I never gave any permission whatsoever, they knew on
7 5th July that they had the rest of Luke's organs, so why
8 did it take from 5th July to 24th September to inform
9 me?
10 I just cannot believe it would take so long for
11 one letter to be drafted. The news that the Trust
12 failed to inform me of my position for two months after
13 they were in a position to do so, though it saddens and
14 infuriates me, it does not come altogether as
15 a surprise. I am now more convinced than ever that the
16 UBHT's behaviour has been calculating, thoughtless and
17 impersonal and that the Trust, truly ashamed of the
18 practice of organ retention, have attempted to sweep the
19 whole affair under the carpet. Their attempts to
20 mollify parents like myself with promises of openness
21 reek of an exercise in damage limitation and show no
22 sign of a genuine sympathy and sensitivity which we have
23 every right to expect.
24 Yesterday, after 14 and a half years, my son came
25 home to me.
0206
1 Q. If there is anything you want to add, Lorraine, I will
2 ask you to do so in a moment. Let us take a moment and
3 ask Marie if you have anything further that you want to
4 say to add to anything that you have already said,
5 anything that needs to be added, bearing in mind that
6 you have every right to say whatever you have to say to
7 the Inquiry, to the public as a whole in writing if you
8 prefer to do it. If any of you have missed something
9 you would like to tell us, then we are here, not only
10 open but want to hear what you have to say.
11 THE CHAIRMAN: I only add for Mrs Pentecost, but not
12 exclusively for her, that she heard me say yesterday
13 that we will be looking into this matter of retention
14 and use of human tissue. We have heard what has been
15 said, we can feel the raw emotion and you can be assured
16 we will be making all the recommendations so people do
17 not have to sit there and feel like that in the future.
18 MR LANGSTAFF: Marie?
19 MS EDWARDS: I would just like to say that the truth needed
20 to be heard, the general public had a right to know the
21 state of their NHS Trust. Unfortunately justice will
22 never prevail. We cannot bring back the children who
23 have died, we cannot cure those children of being brain
24 injured, but hopefully some good will come out of this
25 Inquiry. Thank you.
0207
1 MR MALLONE: I would like to thank the Chairman and the
2 Panel for finding the time to hear our story, it has
3 been very important for us that Josie's life should not
4 have passed unnoticed. You have shown great compassion
5 to those who have suffered terrible losses and I hope
6 I speak for all parents and I thank you for that.
7 The thoroughness with which you have conducted the
8 process gives me great comfort in that you will make
9 every effort to uncover the truth of what happened in
10 Bristol and you will recommend changes to ensure that
11 such events will never happen again.
12 As regards our own case, there are still several
13 matters unresolved. First, how is it possible that
14 a detailed pathology report can still be referred to
15 8 years after our daughter's death yet the UBHT says
16 that no medical records can be found? Why cannot they
17 be found?
18 Secondly, in the absence of these medical records,
19 can any medical expert explain to us why our daughter
20 was paralysed and why she died?
21 Looking out from our case to the wider
22 implications for the Health Service, it seems that more
23 effective training of cardiologists or more effective
24 diagnostic equipment is needed. This Inquiry has heard
25 time and again of cases where a surgeon has gone into
0208
1 the operating theatre only to find that the task he was
2 faced with was quite different from what he had been led
3 to believe.
4 Secondly, what measures can be taken to ensure
5 continuity of care? It should not be possible for any
6 medical professional to interfere in the treatment of
7 a patient without reference to the person in overall
8 charge of that patient or without following explicit
9 guidelines.
10 Thirdly, doctors must be trained to communicate
11 more openly and effectively with patients and those
12 responsible for them, for example parents. There is
13 a fine line between not wanting to worry people and
14 being unduly optimistic to the point of misleading
15 them.
16 Four, doctors and others involved in patient care
17 must also be more aware of the need to communicate
18 effectively with one another. It should not be possible
19 for a parent to be told that a child is going to die and
20 then for this information to be flatly contradicted by
21 another doctor.
22 Fifth, there must be a change in the law which
23 apparently allows hospitals not only to perform
24 postmortems against the will of the next of kin but also
25 to remove organs without even informing them.
0209
1 There was much that was good about the care which
2 our daughter received and the way in which we were
3 treated for some considerable time after her death. For
4 that we are grateful. Sadly she died and this Inquiry
5 cannot restore her to us. It is my sincere belief,
6 however, that you will do all within your power to
7 ensure that others do not suffer in the way that the
8 children and parents in these cases have done.
9 Thank you for your patience and understanding.
10 MR LANGSTAFF: Anne?
11 MRS WAITE: I would just like to read a poem that I have
12 written for all the children of Bristol who died in
13 Bristol or were brain damaged from Bristol:
14 A thousand oceans filled with tears,
15 A trail of grief, of hopes and fears
16 For all our children we held so dear.
17 Our Caroline seemed so well,
18 Nothing wrong with her that we could tell,
19 Our children gave us their trust to do the best
20 To make them well and bring them home
21 But our wishes never came,
22 Instead we had to lose the best
23 And bring them to their final rest.
24 Incomplete and broken,
25 Not as complete as they were born,
0210
1 Our children we will for ever mourn.
2 We must all stay strong together
3 For the lives we must forget never.
4 For all the efforts on their part
5 They failed our children's innocent hearts.
6 Q. Philippa?
7 MRS SHIPLEY: I did not realise we were doing
8 a summing-up. I would like to thank you for your time
9 and hopefully there will be enough things in place to
10 make sure it does not happen again.
11 MR LANGSTAFF: Lorraine I shall invite to add anything that
12 she wants in writing, so she may think about it in due
13 course.
14 Sir, that is the evidence for this afternoon, I do
15 not think there is any re-examination.
16 I understand there is a valedictory word which
17 Mr Lissack would like to utter.
18 CLOSING REMARKS BY MR LISSACK:
19 MR LISSACK: That this Inquiry has managed such difficult
20 issues, so many competing interests and so many problems
21 with such compassion, sensitivity and care over so many
22 days is a tribute to this Inquiry, its staff and, if
23 I may say so, its counsel.
24 For many the whole experience of your Inquiry will
25 have been cathartic, a part of a healing process. For
0211
1 some it was a case of merely hearing the truth and for
2 some they will now be reconciled with their own feelings
3 and thoughts.
4 For many a bare expression of sorrow was all they
5 needed or wanted.
6 For some the antidote to the poison of their grief
7 was to give evidence and in the process that you have
8 enabled them to give evidence, they have already, some
9 personally, expressed their gratitude to you.
10 For some peace comes less easily. But anyone
11 listening to the 95 days of this Inquiry's sitting, if
12 I may say so particularly to today, could not fail but
13 note the humanity of the Inquiry, the capacity for
14 hearing tales of personal grief with a patience, an
15 evenness, a tolerance and a fairness which can only be
16 thought of as remarkable by those of us who practice at
17 the Bar.
18 THE CHAIRMAN: Mr Sharp?
19 CLOSING REMARKS BY MR SHARP:
20 MR SHARP: Sir, much has been said both by Mr Lissack in
21 those remarks, indeed in some of Mr Mallone's opening
22 comments and his final comments, which we would
23 inevitably agree with.
24 We do thank the Inquiry and the counsel who have
25 done so much to assist you, sir, for the balance that
0212
1 you have allowed to inform your deliberations, for the
2 opportunities to put forward views, recollections and
3 memories and the opportunity also to express the faith
4 and the thanks that those who I represent have had in
5 the system as well as recognising the shortcomings which
6 have been obvious to us all.
7 So we thank you, sir, and like others, have great
8 faith in your deliberations.
9 THE CHAIRMAN: Mr Sharp, thank you. It is right that we
10 should not lose sight of what I described as the "raw
11 emotions", although we also are treated to the polished
12 words of counsel. I thank both of them for what they
13 say.
14 Most important I also thank our witnesses for this
15 afternoon, Mrs Shipley, Mrs Pentecost, Ms Edwards,
16 Mr Mallone and Mrs Waite. Thank you very much for
17 spending time with us.
18 There will be a time for us in the Panel to thank
19 those who have helped us, and there are very many of
20 those, on a later occasion. We shall be back here in
21 February, but Mr Langstaff, I cannot let this moment
22 pass without saying that no praise is too high for the
23 learned and humane way in which you have led your team
24 and guided us through the evidence for 95 days. My one
25 fear is that you will find yourself waking up in the
0213
1 middle of the night saying "Can I have SLD 2/6 on the
2 screen?" That, you all know, is the reference to
3 Private Eye!
4 We reconvene, therefore, gentlemen and ladies, on
5 12th January. To everyone I say you will be in our
6 thoughts over the coming holiday period.
7 MR LANGSTAFF: Sir, dare I say, since this is not really
8 a valediction, it is an adjournment to the next session,
9 what time?
10 THE CHAIRMAN: As ever I leave that in your hands.
11 MR LANGSTAFF: At the risk of being disappointed by others,
12 may I suggest it should be at 10.00?
13 THE CHAIRMAN: We will reconvene then at 10.00 on -- we will
14 reconvene for our final hearings on 9th February. It is
15 perhaps appropriate that the last transaction between
16 you and I is chaotic; we have avoided that until the
17 last, thank you again.
18 (5.05 pm)
19 (Adjourned until 12th January 2000 at 10.00 am)
20
21
22
23
24
25
0214
1
2 I N D E X
3
4
5 MR LANGSTAFF RE VENUES FOR FURTHER HEARINGS ........ 1
6
7 MRS SHARON PEACOCK (sworn)
8 Examined by MR MACLEAN ....................... 3
9
10 JUSTINE EASTWOOD (sworn)
11 SHEILA FORSYTHE (sworn)
12 KAREN WELBY (sworn)
13 RICHARD LUNNISS (sworn) ............................ 47
14
15 JOHN MALLONE (sworn)
16 ANNE WAITE (sworn)
17 MARIE EDWARDS (sworn)
18 PHILIPPA SHIPLEY (sworn)
19 LORRAINE PENTECOST (sworn) ......................... 123
20
21 CLOSING REMARKS BY MR LISSACK ...................... 211
22
23 CLOSING REMARKS BY MR SHARP ........................ 212
24
25
0215
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Published by the Bristol Royal Infirmary Inquiry, July 2001
© Crown Copyright 2001