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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