9th September 1999
Oral Hearings continued in Bristol today with evidence from Mrs Jean Pratten, former Hon. Secretary of the Bristol and South West Childrens Heart Circle. She explained the function of the Heart Circle, specifically focussing on is involvement with the funding of two posts to assist families within the Bristol Hospitals; the Family Support Worker at the Bristol Childrens Hospital (BCH)) and the Cardiac Liaison Nurse at the Bristol Royal Infirmary (BRI)). She outlined her observations of the working relationship between the two individuals appointed and described the support and advice she offered them. She then commented briefly on her relationship with the clinical and management staff at both hospitals and discussed the transfer of the paediatric cardiac surgery service to BCH. She concluded by describing the work of Dr Freda Gardner (Clinical Psychologist), from whom the Heart Circle commissioned research into the role of the cardiac liaison nurse.
Mrs Helen Vegoda, Family Support Worker, and Counsellor, BCH, gave evidence to the Inquiry this afternoon. She outlined her qualifications and experience prior to her appointment to the BCH in 1988 and described her role as giving support and information to parents of a non-medical nature. Mrs Vegoda commented on clinical and management supervision and support she had received and on her professional relationship with Helen Stratton, Cardiac Liaison Nurse. She then commented on the equity of access to counselling support services for families at the BRI and BCH and described her observations of the way parents were informed of the diagnosis and risks of surgery associated with their childrens conditions. She concluded by commenting on the issues of tissue retention and the split site.
All week the oral hearings have been attended by Valerie Mandelson, the Inquirys expert on counselling services for bereaved parents. She concluded the weeks evidence with her observations about the structures and systems which existed in Bristol, the nature of the services provided and how the service compared with the rest of the country.
1 Day 47, 9th September 1999 2 (9.30 am) 3 THE CHAIRMAN: Good morning, everyone. Good morning, 4 Mr Maclean. 5 MR MACLEAN: Good morning, sir. This morning's first 6 witness is Jean Pratten, a founding member and former 7 Chairman of the Heart Circle, about which the Panel have 8 heard something already this week. Could I invite 9 Mrs Pratten to come to the witness table? 10 Mrs Pratten, could I ask you to stand, please, to 11 take the oath? 12 MRS JEAN PRATTEN (SWORN): 13 Examined by MR MACLEAN: 14 Q. Your full name is Jean Ruth Pratten? 15 A. That is right. 16 Q. As I have already said, you were a founding member and 17 former Chairman of the Heart Circle? 18 A. That is right. 19 Q. Could I ask you to look at the screen in front of you 20 and could I have WIT 269/1? 21 Can we see the whole page, please? Is that the 22 first page of the formal written statement that you have 23 made to the Inquiry? 24 A. Yes, it is. 25 Q. If you go to page 12, that is your signature, is it not? 0001 1 A. That is right. 2 Q. Have you read that statement over recently? 3 A. Yes. 4 Q. Are you content that the contents of it are true? 5 A. Yes. 6 Q. As well as the providing your own statement, you have 7 also provided I think one written comment on someone 8 else's statement. That is a comment on the statement of 9 Helen Stratton. If we have WIT 256/106, that is your 10 comment there, is it? 11 A. Yes. It is a bit small, but ... 12 Q. Yes. In particular, you deal with the point that Helen 13 Stratton made at paragraph 32 of her statement, which 14 again we will come back to in due course. 15 A. Thank you. 16 Q. You have also supplied some other supporting 17 documentation to the Inquiry, Heart Circle publications 18 and so on, and also, I think, a report by Dr Gardner, 19 who is a clinical psychologist, which is at WIT 269/13. 20 That is a report, I think, the Heart Circle 21 commissioned after Helen Stratton left her post as 22 cardiac liaison nurse in February 1994; is that right? 23 A. Yes, correct. 24 Q. Again, I want you in a moment to explain a little more 25 subsequently as we go along, the provenance and 0002 1 importance as you see it of that document. 2 It is also right, is it not, that you gave 3 evidence at the General Medical Council hearings? 4 A. Yes, I did. 5 Q. Essentially on behalf of Mr Wisheart? 6 A. I did. 7 Q. Could you just explain to me how it came about first of 8 all that the post which Helen Vegoda subsequently filled 9 was created when it was created at the Children's 10 Hospital, and secondly, why it was that she, in 11 particular, was the person who filled that post? 12 A. I can remember being in Bristol Children's Hospital. 13 I used to visit the hospital regularly, and Dr Joffe 14 approached me one day and said that he would like to set 15 up the post of a family support worker. He asked about 16 funding for such a post, and I had, for years, been 17 trying to give as much support as I could to families in 18 a voluntary capacity. I would pop into the hospital 19 when I was invited by the ward or whenever, or by 20 families, and I could see maybe that there was such 21 a need for somebody to be there all the time. So I put 22 it to our committee, who agreed to fund that post, 23 initially for a year. 24 Q. And what sort of financial commitment was that? 25 A. It came to about #30,000 in the end. We paid #15,000 0003 1 I think in the first year, and then #5,000 for three 2 years after that. I think that is right. We also set 3 up the office, paid for all the office to be furnished 4 and everything. There were incidental expenses as well. 5 Q. Let us take the first year for the moment. What type of 6 commitment was that for the Heart Circle in relation to 7 its total resources? 8 A. We always had the resources before we agreed to fund 9 anything, so we would obviously have had the #15,000 10 available for such a post, but it would have been a fair 11 commitment. 12 Q. Was it the most significant financial commitment the 13 Heart Circle would have had at that time? 14 A. At that time, yes. 15 Q. Are you able to recall now what the annual income of the 16 Heart Circle was about that time? Obviously it would 17 vary, but -- 18 A. #50,000 or #60,000 a year, something like that. I have 19 not looked that fact up. But I would say about that. 20 Q. The second part of the question was why Helen Vegoda, in 21 particular, was chosen to fill that post. Can you help 22 us with that? 23 A. I was invited to attend the interviewing panel and I was 24 asked to bring another Heart Circle representative with 25 me, and I brought the Chairman of the South Devon group 0004 1 with me. I felt it was a very organised panel for such 2 a post. We were not felt to have been part of it, even 3 though we had been invited to it, and we were invited to 4 sit on the side, and I think there were two or three 5 people interviewed. At the conclusion, Mary Andrews and 6 I, and one or two others, felt that Helen Vegoda did not 7 have the necessary qualifications for the job, but at 8 the end of the day, we did not take part in the voting 9 for the job because we felt it very difficult, as 10 a voluntary organisation that had never become part of 11 the politics of the hospital, to give our vote. That 12 was a considered situation. Though we were going to 13 fund the post, we were not going to employ the post. 14 Q. I will come to that point in a moment. What type of 15 qualifications did you think this post required? 16 A. Certainly hospital experience. I would have thought 17 nursing experience, or certainly awareness of a cardiac 18 situation, of cardiac children and their needs, and the 19 stresses that the parents go through. 20 Q. So in fact you felt that Helen Vegoda was not 21 appropriately qualified or experienced for the job which 22 she eventually obtained? 23 A. Yes. I am not decrying how she did the job. At that 24 stage, I would definitely have felt that. 25 Q. Was there any contribution to her salary from anywhere 0005 1 other than the Heart Circle? 2 A. I have no idea. I do not think so. We only paid our 3 contribution, which is what we offered to give. I never 4 saw any other sign of financial dealings for her. 5 Q. So there were two representatives of the Heart Circle 6 broadly defined at the interview? 7 A. Yes. 8 Q. You and -- 9 A. Mary Andrew. 10 Q. And neither of you felt that Helen Vegoda was 11 appropriately qualified for the job? 12 A. That is right. 13 Q. So who was it, then, that, as it were, pushed through 14 her appointment? 15 A. There was a very well qualified board there and there 16 was -- I mean, I am going back in my memory now. It was 17 not a unanimous vote. We did not take part; it was 18 Dr Joffe, Professor Baum, Mr Wisheart, some 19 psychiatrist, I am not sure of his name, somebody from 20 the medical social work department. Those were the 21 people that come to mind, and we sat on the side, we did 22 not take part in the vote because it put us in 23 a difficult position. We had been asked to fund the 24 post. 25 Q. Once she was appointed, what was Helen Vegoda's job as 0006 1 you understood it? 2 A. At that stage I understood it to be a family support 3 worker. That is how we entitled that job. 4 Q. What would that mean? 5 A. To be available for people to come and talk to, to share 6 their problems. I think when you have a child diagnosed 7 with a cardiac problem, there are three stages you have 8 to go through. The first terrible stage is diagnosis. 9 That is where families often were in Bristol Children's 10 Hospital, bewildered, with a new baby, newly diagnosed, 11 and at that time they have something to have to come to 12 terms with, and a support person in the hospital to whom 13 you can go and talk is very valuable. 14 Q. At the diagnosis stage, so Helen Vegoda's role would 15 embrace talking to the parents at that stage? 16 A. Yes. 17 Q. What about the other important stage? 18 A. The next stage is catheterisation, which I believe is 19 the worst stage. That is when a reasonably accurate 20 diagnosis is made and at that time as a parent you are 21 seeing everything that is wrong. You have no programme 22 as to where you are going next. You are being told all 23 the problems that your child, your baby, whatever, is 24 having to face. And of course the third stage is 25 open-heart surgery, if it is offered, or closed-heart 0007 1 surgery, or no surgery at all. 2 Q. The diagnosis stage: the diagnosis would presumably 3 often be given to parents by the cardiologists? 4 A. That is right. 5 Q. Outside of Bristol, at clinics which they would conduct 6 throughout the South West? 7 A. Often not. The children were often sent up to Bristol 8 for accurate diagnosis. 9 Q. If there were to be diagnosis to be given at such 10 a clinic, say in Gloucester or in Bath or South Wales, 11 was the expectation that the Helen Vegoda person, the 12 person filling that role, would be present at those 13 clinics? 14 A. No. I do not think so. 15 Q. So she would only be present at diagnoses which were 16 communicated to parents in Bristol? 17 A. Yes. I think what happened quite often was, an early 18 diagnosis might have been made at the district hospital 19 and the child was sent up for confirmation of that 20 diagnosis. I came across those children often because 21 we would often give those families a grant, and some of 22 those families had been in at least four hospitals 23 before they reached Bristol, within a fortnight of the 24 baby's birth; sometimes five, if the baby had been born 25 at home or in a district hospital. 0008 1 Q. Who was Helen Vegoda's boss when she took up this role? 2 A. I never knew. Dr Joffe gave her support. 3 Q. He was a cardiologist? 4 A. That is right. I tried to help her because I realised 5 she did not have an understanding of the needs of 6 children or their relatives. I gave a lot of time to 7 trying to help her to understand the needs of those 8 families and the children. 9 Q. You were not her boss? 10 A. No, I funded. 11 Q. At this stage in the late 1980s, when Helen Vegoda took 12 up her post in 1988, to what extent did her work embrace 13 the Bristol Royal Infirmary as well as the Children's 14 Hospital? 15 A. She used to take the families down to the unit before 16 surgery, I remember. 17 Q. Was it part of her role, as far as you remember, to be 18 at the Bristol Royal Infirmary during the day of 19 surgery? 20 A. I cannot remember. 21 Q. But being there, being at the BRI on the day of surgery, 22 later became an important part of Helen Stratton's role? 23 A. That is right. 24 Q. Helen Vegoda therefore took up her position in 1988, 25 before the UBHT had been established, the old pre-Trust 0009 1 system. Are you able to help us with an assessment of 2 the way in which the management reacted to her role, 3 whether they supported her appropriately or 4 inappropriately? 5 A. Helen Vegoda's role? 6 Q. Yes. 7 A. I think it was looked at, as I said in my statement, as 8 a supernumerary role, and I do not think that the role 9 that she had, or the job description that she had, 10 really fitted into any established management line, if 11 you see what I am trying to say. She did not fit into 12 a social work department because she did not have the 13 qualifications, but nobody from the social work 14 department, I think, was her line manager. She did not 15 fit into obviously the nursing side of things. 16 Q. And nor did she fall within the established chaplaincy 17 type organisation either? 18 A. No. 19 Q. How did it come about, then, that a second post was 20 created in 1990, which was ultimately filled by Helen 21 Stratton, which was also, as I understand it, funded in 22 whole or in part by the Heart Circle? 23 A. The Heart Circle had to work on the -- well, we did, we 24 had the two sites. We had completely separate 25 managements, if you like. The Children's Hospital, and 0010 1 their management team, and Bristol Royal Infirmary and 2 their management team. 3 The Heart Circle, over the years, spent very much 4 more of its time and energy on Ward 5 in the Bristol 5 Royal Infirmary because there were other means of 6 support, the friends of the Children's Hospital and 7 things up the road, as it were, and we felt that 8 children, being operated on in a cardiac unit, not 9 a paediatric cardiac unit, was where we should be 10 focusing our work to try and make everything on that 11 unit as good as possible for the children, and as easy 12 as possible for the parents. 13 So over most of the years of the work of the Heart 14 Circle, we were very involved at Bristol Royal 15 Infirmary. 16 It was obvious to us in the Heart Circle that -- 17 well, it is obvious to anybody -- that having to face 18 open-heart surgery in Bristol Royal Infirmary in 19 a separate and different hospital is not easy; you have 20 placed your trust in the Bristol Children's Hospital and 21 you are going to have to take your child to Bristol 22 Royal Infirmary. Bristol Royal Infirmary always was 23 a very, very busy unit, and I felt, together with my 24 colleagues in the Heart Circle, that there was 25 a definite need for a qualified nurse, counsellor, but 0011 1 she was not a counsellor, a qualified nurse, able to 2 help the families, ask the right questions prior to 3 surgery, if you like, answer any questions that have 4 a link with GPs and the community from whence they came, 5 who was knowledgeable and was there and available and 6 not on shift-work, to whom the parents could turn. 7 Q. So the impetus for the creation of this role came from 8 the Heart Circle itself? 9 A. From observations with the management, with Sister Julia 10 Thomas in particular on Ward 5. 11 Q. So the Heart Circle thought that the creation of this 12 new post was a good idea? 13 A. Yes. 14 Q. And Julia Thomas thought it was a good idea? 15 A. Yes. 16 Q. And both the Heart Circle and Julia Thomas pushed for 17 the creation of this post? 18 A. The post seemed to happen. We agreed to fund it, again, 19 because we did feel that parents needed somebody to whom 20 they could turn to get proper information; when they 21 went back to the community, they had somebody who would 22 speak to their GP before them to make links with the 23 community, to make links with health visitors, to have 24 a professional input into the South West. 25 Q. Did the Heart Circle enter into negotiations, as it 0012 1 were, with the Health Authority as it then was? 2 A. No. 3 Q. Suggesting that they might pay some of the costs of this 4 post? 5 A. Through the management of the cardiac unit, it was 6 always assumed that that post would, after three years, 7 be taken on by the Trust, but in fact it did not. 8 Q. When Helen Stratton actually took up her post, the Trust 9 was not yet in being, although it was known that it was 10 going to be in being? 11 A. Right. 12 Q. When you say it was always understood, by whom was it 13 understood? 14 A. By myself. We agreed to fund the post for three years 15 with Julia Thomas and the management of the unit. 16 Q. Who was "the management" of the unit, as you understood 17 it? 18 A. I cannot recall. 19 Q. Do you mean doctors? 20 A. No. 21 Q. Nurses or managers? 22 A. Julia Thomas was the person I spoke to mostly. She was 23 the hospital person, I was the funder. 24 Q. So you do not recall discussions with the Finance 25 Department of the putative trust, for example? 0013 1 A. No. 2 Q. The creation of this post, the need for this post as you 3 saw it, was that something that arose only in 1990, or 4 was it a need that had been there for some time? 5 A. A need had been there for some time. 6 Q. Had there been previous attempts to create such a post? 7 For example, why was not this post created at the same 8 time as Helen Vegoda's? 9 A. That post was created around us, if you see what 10 I mean. It was Dr Joffe's instigation. I do not know. 11 We always talked about having a specialist nurse on the 12 cardiac unit. Things evolved. I am going back a long 13 time and I cannot really remember. 14 Q. You said that "that post was created around us at 15 Dr Joffe's instigation". You mean Helen Vegoda's post? 16 A. Yes. 17 Q. Given that Helen Stratton came to that post, can I ask 18 you the same questions as I asked you about Helen 19 Vegoda? First of all, what was this role to be, and 20 secondly, why did Helen Stratton fill it? 21 A. It was supposed to be a cardiac liaison post, a Sister 22 post, to liaise between the community and the unit, and 23 to enable parents to liaise with her, so that they had 24 somebody to whom they could turn. 25 Q. Before or after the operations? 0014 1 A. I think it was hoped originally that she could have gone 2 to the outpatients appointment prior to surgery, but 3 that did not work out because it was in the Children's 4 Hospital, and I do not think she was made very welcome. 5 Q. Was it envisaged, therefore, by those such as you who 6 had the concept in their head of this post, that the 7 person who had that post would work at the Children's 8 Hospital as well as at the BRI? 9 A. Particularly at the -- at the outpatients prior to 10 surgery. 11 Q. And that would typically be attended by obviously the 12 patient, the parent and the cardiologist or the surgeon? 13 A. The cardiac surgeons. 14 Q. So that would be the opportunity, usually the first 15 opportunity, to meet the surgeon who would conduct the 16 operation; is that right? 17 A. Yes. 18 Q. At that stage, do I take it that the reason for having 19 a nurse would be that the nurse would essentially help 20 the parent to understand and ask intelligent questions? 21 A. That is right, or interpret what they have been told 22 afterwards. 23 Q. So that was the importance of being at that appointment? 24 A. Yes. 25 Q. In fact, as matters developed, to what extent did Helen 0015 1 Stratton attend such appointments? 2 A. Very few, I believe. I cannot recall. 3 Q. Why should that set of circumstances have come about? 4 A. There was obviously a difficulty between the two posts, 5 as well as between the two hospitals. I think between 6 the two qualifications, if you like. 7 Q. You mean there was a difficulty between the two women? 8 A. Yes, and between their different qualifications. 9 Q. So it is important, perhaps, to distinguish between 10 clashes of personality on the one hand and more 11 deep-seated structural problems on the other? 12 A. I never got particularly involved. I know Helen 13 Stratton set up a meeting to try and iron these problems 14 out. I was not involved with that. 15 Q. You were not at that meeting? 16 A. No. 17 Q. But the meeting as you understood it was at Helen 18 Stratton's instigation? 19 A. Or it might have been -- I do not know. I was not up 20 there and I did not set it up and I had nothing to do 21 with it. I just know that they tried to iron things 22 out. I never got involved in the policy and politics of 23 that. 24 Q. So if I were to say that Helen Stratton's role was one 25 of communication between the GP, the health visitor and 0016 1 the parents, and acting as a source of information for 2 the parents, some of whom had travelled a long distance, 3 as they made the transition from the Children's Hospital 4 to the BRI, that the role was an information-giving, 5 communicating, co-ordinating role -- 6 A. And availability. A support role as well. She had 7 a room, a nice room which we set up on the unit where 8 she could talk to people in a relaxed way. 9 Q. In the BRI? 10 A. Yes. 11 Q. Mrs Pratten, what do you understand a counsellor to be 12 in a hospital setting? What does counselling mean to 13 you? 14 A. It has become a different word to what it used to be. 15 It has become somebody who has been on a course and 16 learned to be able to listen and be a listening ear, and 17 presumably give good psychological advice. I have never 18 been to one, and I do not consider myself one, so I do 19 not really take it further than that. A counsellor is 20 somebody you can go to to talk things through with in 21 the widest possible terms. 22 Q. If I had asked you that question in 1990, "What is 23 a counsellor in a hospital setting?", what would you 24 have said? 25 A. Somebody to whom you can turn to talk things through 0017 1 with, I suppose in a hospital setting. I do not ... 2 Q. Was Helen Stratton a counsellor? 3 A. She was somebody who would be willing to listen and who 4 people could talk to, the same as Helen Vegoda was 5 somebody who would listen and people would be willing to 6 talk to. You are pushing me quite hard on a point 7 I have never -- we called Helen Stratton the cardiac 8 liaison sister in her post and when Helen Vegoda was 9 appointed she was a family support worker. 10 Q. If somebody said, "Is Helen Stratton there to counsel 11 parents?" you would have said "Yes"? 12 A. To listen to them, yes, and help them, and help them get 13 the information and facts correct. Sometimes parents 14 were quite bewildered as to what they were being told 15 and they wanted to talk things through. 16 Q. Can I have on the screen UBHT 167/74? This is the 17 Annual Report for Bristol Cardiac Surgery, and it 18 embraces both hospitals. We see that from the title. 19 It is the annual report for 1989. 20 A. Right. 21 Q. I want you to go to page 76, please. Do you see in the 22 first paragraph: 23 "The nursing team on Ward 5 now includes about 24 75 nurses led by the senior sister, Miss Julia Thomas, 25 and 6 other sisters and supported by Mrs Helen Vegoda, 0018 1 counsellor to the families of children, and Miss Helen 2 Stratton, who has a similar but wider counselling role 3 supporting any families in need and also the staff. 4 Both of these later appointments were made possible by 5 the farsighted leadership and generosity of the Bristol 6 and South West Children's Heart Circle under the 7 leadership of Mrs J Pratten." 8 To what extent would you have agreed with the 9 statement that Helen Vegoda was a counsellor to the 10 families, but Helen Stratton was somebody with a similar 11 but wider counselling role? 12 A. The "wider role" was her qualifications. 13 Q. The roles were actually very different? 14 A. Yes, completely different. 15 Q. One was a nurse, one was not? 16 A. I cannot tell you. I believe Helen Vegoda had been on 17 a counselling course, or part-time counselling course or 18 something, I believe. I know that Helen Stratton had 19 been the South West co-ordinator for transplants. 20 Q. Yes? 21 A. So I think you are tying me up on the word "counselling" 22 a bit, because I looked at them as people doing a job, 23 and I did not get involved in their job description. 24 I was funding the job on behalf of the Heart Circle, 25 because it was the Heart Circle's choice that there 0019 1 should be extra people supporting families who had come 2 a long way to this hospital and needed some sort of 3 support, both when their children went to surgery, when 4 their child was diagnosed and sadly when a child died. 5 Whether it was called a "counsellor" or not never 6 really came into my thinking. They were people working 7 in the hospital funded by the Heart Circle, whom I could 8 also talk to. 9 Q. Would it be accurate to describe Helen Stratton's role 10 as that of a support nurse? 11 A. A cardiac liaison sister, a support sister. 12 Q. The two would be synonymous as far as you were 13 concerned? 14 A. Yes. 15 Q. Were you aware of what somebody called Mary Goodwin was 16 doing at Great Ormond Street? 17 A. I had met her, yes, earlier. 18 Q. To what extent did you understand Helen Stratton to be 19 trying to perform the same role in Bristol as Mary 20 Goodwin had at Great Ormond Street? 21 A. I do not think I got involved. I know that Helen 22 Stratton admired the work of Miss Goodwin, is it, in 23 Great Ormond Street, and I know she used to like to go 24 up there and discuss, because, again, Helen Stratton was 25 quite isolated. She did not have a very good support 0020 1 structure or line management or anything. It was good 2 for her to discuss her job as she saw it, it was a new 3 job anyway, with other hospitals with more experience. 4 Q. I was going to ask you, I asked you about Helen Vegoda: 5 who was Helen Stratton's boss? 6 A. I think probably in the initial stages, I suppose Julia 7 Thomas took on a responsibility because she was with me 8 in setting up the role, but when she retired, I think, 9 again, those two posts were seen as supernumerary and 10 did not fit into an actual line management situation. 11 Q. How would you react to the suggestion that you were 12 Helen Stratton's boss? 13 A. No. I was somebody she could talk to. I funded her 14 post. I would like to talk things through with Helen 15 Stratton because there were very many ways on the 16 cardiac surgery unit that more facilities could be 17 provided, more support could be provided, for families, 18 and therefore the only way you can find out what is 19 needed on that unit is to talk to somebody in the know, 20 and we would discuss things as we felt we could provide 21 to make life better. 22 Q. But you are pretty clear that you were the boss of 23 neither Helen Vegoda nor Helen Stratton? 24 A. At that time I was probably the Secretary of the Heart 25 Circle -- maybe I was the Chair of the Heart Circle, in 0021 1 1989, perhaps, and it was the Heart Circle's choice to 2 fund those posts. But the funding was paid afterwards 3 to the Trust, so no payslip or anything came from the 4 Heart Circle to those posts; it was paid -- we were 5 billed afterwards, sometimes considerably afterwards, to 6 pay back the Trust what they had paid out in salary. 7 Q. No doubt as a matter of employment law -- I am not going 8 to ask you to comment on that -- Helen Stratton was 9 employed by the hospital and not by the Health Authority 10 or later by the Trust, but in essence, the Heart Circle 11 put up the money -- 12 A. That is right. 13 Q. -- after the fact, to recompense the hospital for those 14 salary payments? 15 A. Well, the jobs would not be there without it. 16 Q. But yesterday Mr Langstaff asked Helen Stratton to say 17 as far as she was concerned, to whom was she answerable 18 for the work that she did, who was her boss, and she 19 said that she perceived that you, as Chairman of the 20 Heart Circle, was her boss, because the Heart Circle 21 were paying her salary. But then she said: 22 "It was quite unclear. Apart from my perception 23 of it being Jean Pratten, because the Heart Circle were 24 paying my salary and for day-to-day things going on in 25 the unit, I would probably refer to Fiona Thomas or 0022 1 Julia Thomas in the beginning of my job, but I cannot 2 remember that ever being formalised; that was just 3 something I did." 4 How would you react to that response? 5 A. It probably was not formalised, but Julia Thomas was 6 the senior sister on the unit under whom she worked. 7 Q. Would it have been helpful or unhelpful if it had been 8 more formalised? 9 A. Yes, it would have been helpful. 10 Q. If you were responsible for the formalisation process, 11 what would you have done? 12 A. How do you mean? How would I have spoken to Julia 13 Thomas and said "Formalise it up", you mean? 14 Q. If you had been given a sheet of paper and told to draw 15 out the structure which would have been appropriate to 16 formalise Helen Stratton's role, what would you have 17 done? 18 A. I suppose I would have gone and talked to somebody and 19 got on with it, but I never was in that position. 20 Q. But the appropriate link would have been to the senior 21 sister in charge of the ward, would it, in your opinion? 22 A. In my opinion, or later on, the manager of the unit, who 23 was first Lesley Salmon, I think, and later -- 24 Q. Rachel Ferris? 25 A. Rachel, yes. 0023 1 Q. I was going to ask you about the directorate structure 2 that the Trust introduced. The Panel has heard much 3 about the various directorates of children's services 4 and surgery and so on, and subsequently the development 5 of the directorate at the BRI, of the Directorate of 6 Cardiac Services. 7 To what extent did those various management 8 structures and changes at the BRI impinge upon the role 9 that Helen Stratton performed? 10 A. I cannot comment, really. I can remember at the end of 11 Helen's second year, or first year and second year, 12 I set up with Rachel Ferris, I think, that she should do 13 a presentation to show what she has achieved during the 14 year. I spoke to Rachel Ferris about having some 15 feedback as to where the post had gone. So to that 16 extent, Rachel Ferris and Fiona Thomas and myself, 17 I think, twice had a presentation by Helen Stratton on 18 her work, so therefore, I would consider, from that, 19 that she was involved with Rachel and with Fiona. 20 Q. Can I just take you back in time a little bit to the 21 meeting which took place between Helen Stratton and 22 Helen Vegoda, as you put it, I think, to try to iron out 23 the difficulties that there seemed to be. 24 You were not at that meeting? 25 A. No. 0024 1 Q. Were you invited? 2 A. No. 3 Q. Who attended that meeting, as far as you were aware? 4 A. I think Dr Joffe went with Helen Vegoda, and therefore 5 I think I can remember Helen inviting Mr Wisheart to go 6 with her, but that is just from my memory. I had 7 nothing to do with it. 8 Q. I think it is right that Dr Joffe and Mr Wisheart both 9 attended that meeting. What did you understand the 10 outcome to be and why? 11 A. I cannot recall. 12 Q. Were you conscious of the fact that Helen Stratton felt 13 frustrated that she was not going to be allowed over the 14 threshold of the Children's Hospital as she had 15 anticipated? 16 A. Yes. 17 Q. And you had anticipated that she would be allowed over 18 that threshold? 19 A. Yes, and in fact I think -- I am only going from my 20 memory, but I feel sometimes the nurses from ITU and the 21 Children's Hospital used to invite her up to talk to 22 them so that she was doing some, you know, work between 23 the two hospitals with them. But that is from memory. 24 Q. I think Helen Stratton said she was indeed friendly with 25 a couple of the nurses -- 0025 1 A. Yes, and that had to cease too, I believe. 2 Q. Why did that have to cease? 3 A. Because she was not welcome in the Children's Hospital, 4 I suppose. I never got involved. 5 Q. Would that be because Helen Vegoda would not let her in, 6 or because Dr Joffe would not let her in? 7 A. I cannot tell you because I was not at the meeting. 8 Q. What was your perception? 9 A. My perception was that there was an incompatibility 10 between the two posts, and there were two separate 11 managements, as I mentioned earlier, of each hospital, 12 so the whole of the cardiac services for children were 13 not integrated in one unit; there were two completely 14 different sections. I would have thought, had there 15 been one unit that could have looked at both posts 16 together -- do you see what I am trying to say -- it 17 might have worked. 18 Q. Does the fact that Dr Joffe attended the meeting as you 19 put it with Helen Vegoda, indicate that Dr Joffe was the 20 driving force, if you like, at the Children's Hospital 21 of the cardiac services? 22 A. Yes, I would say so. 23 Q. He was the leader? 24 A. Yes, I would say so, at that time. 25 Q. And it would follow, would it, that Mr Wisheart was 0026 1 essentially the leader of the BRI-based team? 2 A. Probably. 3 Q. So to the extent that there were incompatibilities in 4 these roles, ultimately the responsibility for sorting 5 them out would have lain with the respective leaderships 6 of the two sites; is that right? 7 A. Yes. It did not lay with me. I am a complete 8 volunteer, you know, who was trying to assess or 9 identify where we can go to help situations, not get dug 10 down in the mire of it. 11 Q. I am not suggesting you were the one who should have 12 brought along a very large iron and ironed it out -- 13 A. I was not able to. 14 Q. Your organisation was funding these posts. Was it not 15 within the Heart Circle's power to go to somebody and 16 say "Wait a minute, we are funding these posts and they 17 are incompatible"? 18 A. I certainly went to somebody earlier in the Children's 19 Hospital about Helen Vegoda's post. No, we were not 20 funding Helen Vegoda's post at that time, I think we 21 were probably only funding Helen Stratton's, but if we 22 were funding Helen Vegoda's, it was minimal. 23 Q. Who did you go to, to make those points? 24 A. Which points? 25 Q. When I said go to somebody and say "Wait a minute, we 0027 1 are funding these incompatible posts", you said 2 "I certainly went to somebody earlier in the Children's 3 Hospital about Helen Vegoda's post"? 4 A. I went to somebody in the first six months, a manager in 5 the hospital -- I cannot remember her name -- and 6 expressed my concern. 7 Q. By "manager" you mean a professional manager as opposed 8 to a clinician? 9 A. Yes. 10 Q. This would be in the late 1980s, in the early days of 11 Helen Vegoda's post? 12 A. Yes. 13 Q. Before Helen Stratton's post had ever been created? 14 A. That is right. I never felt it was my role to interfere 15 with their territories, if you like. 16 Q. You felt, did you, that the Helen Vegoda post was an 17 error from the very beginning? 18 A. Helen Vegoda played a very useful part in supporting 19 families. There were families who certainly were helped 20 by knowing her, but the qualifications for that post 21 were not met, that is all I am going to -- what I felt 22 were right. 23 Q. So without any criticism of her dedication or commitment 24 to -- 25 A. I would not criticise her dedication in any way -- 0028 1 Q. -- to her job: as you understood it, it was not the 2 right job in the first place? 3 A. That is right. 4 Q. Was that the nature of a concern you expressed to the 5 Manager of the hospital? 6 A. Yes. 7 Q. What was the reaction to that expression of concern? 8 A. Negative. They did not really want to hear. 9 Q. Did they say "Go away, Mrs Pratten, just keep funding 10 the post"? 11 A. Sort of. That is right. 12 Q. You must have thought -- 13 A. In fairness, I suppose the post had been made, it had 14 only been running a short time by that stage, and she 15 had not had the opportunity to really understand, 16 maybe. 17 Q. But if the problem was a structural problem rather than 18 a lack of understanding of the post holder, then it was 19 not something that was liable to get better over time? 20 A. Well, she was a great help to many families and I will 21 leave it at that -- or she has been a great help to 22 families, may I leave it at that. 23 Q. Tell me, please, about Freda Gardner. How did she 24 appear on the scene and how did she impact on Helen 25 Stratton's role or Helen Vegoda's role? 0029 1 A. I knew Freda Gardner when she, I suppose, started with 2 Professor Angelini, or even earlier, as, what was she, 3 a Research Fellow under Professor Angelini. 4 Q. She came initially to further an academic career? 5 A. Yes. 6 Q. To complete, I think, a PhD? 7 A. That is right, and I knew her while she was completing 8 that PhD. 9 Q. And she was a clinical psychologist? 10 A. That is right. 11 Q. To what extent did she guide or supervise Helen Stratton 12 in her work? 13 A. There came a point when Helen Stratton was certainly not 14 coping. I am not saying -- she was not coping as 15 a person, as herself; she was finding it very, very 16 hard, and I knew Freda Gardner, and Helen knew Freda 17 Gardner, and asked Freda if she would give Helen some 18 support, because she certainly needed it badly. 19 Q. Was that because of the volume of work she had to do, or 20 because of the strain of the work she had to do? 21 A. The strain of the work she had to do and the time she 22 had to do it. She was on call, often she was in there 23 quite late, quite early in the morning, and that had 24 been going on over quite a long time. 25 Q. You said, I think, earlier on, that the creation of this 0030 1 post was somebody who was not going to be working 2 shifts? 3 A. Yes. 4 Q. So it was essentially a day job? 5 A. Supposedly. 6 Q. With fixed hours? 7 A. No, flexible hours. 8 Q. But a set number of hours a week? 9 A. I do not know. I have not got her job description. 10 I can remember when she came to me, when she was 11 particularly tired or something, you know, I said "For 12 goodness sake, if you worked late last night --", but 13 I was only giving a common sense advice, really. I did 14 not hold her job description, or the contract. 15 Q. If she had been working perhaps long hours for 16 a successive number of days and an operation concluded 17 unsuccessfully in the early evening, what would you 18 expect her to do? 19 A. She would probably have said to that family that she 20 would be there when the child came back from surgery. 21 Q. And if -- 22 A. And she would be there. 23 Q. If the surgery overran its expected time, she would 24 wait, would she? 25 A. I think she did. 0031 1 Q. Was she paid overtime? 2 A. I do not know. 3 Q. And there was no substitute that could come "off the 4 bench" for Helen Stratton, because she was the only 5 person fulfilling that role? 6 A. Yes. I would sometimes go for her, if she was on 7 holiday or anything. 8 Q. She took up her post, I think, in the autumn of 1990? 9 A. Yes, October. 10 Q. October 1990. Initially, the post was for three years? 11 A. That is right. 12 Q. You said there came a time when she was obviously not 13 coping. Are you able to help me with when that time 14 was? 15 A. No. Probably spring 1993? Something like that. But 16 she did better when she had the support of Freda 17 Gardner. 18 Q. So your recollection would be that it was in about the 19 spring of 1993 -- 20 A. Yes, I would think. I do not know. 21 Q. -- that things began to get on top of Helen Stratton? 22 A. About then. 23 Q. Was there anything that you noticed that would explain 24 why at that particular time things should get on top of 25 her? 0032 1 A. Obviously there were babies who were dying, very, very 2 sadly, which upset her dreadfully. 3 Q. More then than previously? 4 A. I think so, perhaps. But then, do not forget, I have 5 been involved with paediatric cardiac surgery for 40 6 years, since my daughter was born, which was the early 7 days of cardiac surgery. So I have been through times 8 like this in the past when new procedures have started, 9 so I have always lived with -- well, when my daughter 10 was born she was considered inoperable for eight years, 11 so I have always lived close to the fact that your child 12 is born with a very serious problem, and that is a very 13 likely outcome. 14 Q. Your perception was that Helen Stratton was under 15 enormous pressure at that time, perhaps more pressure 16 than she could cope with at that stage? 17 A. Yes. 18 Q. And would it be fair to say that you perceived there to 19 be, at that time, a possible reason for that increase in 20 stress? 21 A. Yes, I have stated that. 22 Q. -- was that there was a larger number of deaths than 23 previously, and you understood that to be linked to 24 a new procedure that was being carried out? 25 A. I believe so. 0033 1 Q. Do you know which procedure that was? 2 A. No. 3 Q. When did Helen Stratton first make known to you this 4 particularly difficult strain she was under? 5 A. I cannot recall. She would come up and have a cup of 6 coffee and talk things through, in a very informal way. 7 Q. You saw each other regularly? 8 A. Yes. 9 Q. For a chat? 10 A. Yes. 11 Q. So the likelihood is, is it, that you would have known 12 fairly quickly when she became under this strain? 13 A. Yes. That is when I got in touch with Freda Gardner. 14 I was not qualified to help her; I was only somebody she 15 could talk to. 16 Q. So the probability is that you would have known that she 17 was under strain, you would have noticed she was under 18 strain, and either put her in touch with Freda Gardner 19 or suggested to Freda Gardner that she contacted Helen 20 Stratton. Is that how it was? 21 A. Yes. I asked Freda Gardner to contact Helen Stratton, 22 I think. 23 Q. Julia Thomas, you have mentioned a few times. She was 24 the senior sister in Ward 5, was she? 25 A. Yes -- she was not at that time. Fiona Thomas was at 0034 1 that time, I think. 2 Q. But Julia Thomas, I think, resigned, did she not? 3 A. As senior sister, or ward manager, or whatever Nurse 4 Manager she was. 5 Q. What impact did that have on Helen Stratton's role? 6 A. I do not know. 7 Q. Can I take you to your witness statement, WIT 269/4? 8 Paragraph 14, the bottom of the page. We see now where 9 the previous question came from: 10 "After Sister Julia Thomas resigned as Nurse 11 Manager, I never felt the managers of the unit 12 appreciated the importance of the post of liaison sister 13 and with voluntary funding considered the post to be 14 supernumerary. They did not give Helen Stratton the 15 support she needed in such a demanding and emotionally 16 draining position. Helen was on call for parents almost 17 24 hours a day and she also gave support to the nursing 18 staff." 19 What was the nature of the change you obviously 20 noticed -- 21 A. Sister Julia Thomas was very instrumental in setting up 22 the post, so she was committed to it. Fiona Thomas took 23 over from her, and the role, I think, was bigger. She 24 was, I felt, more interested in adult patients, 25 probably, than the paediatric side of it, and Julia was, 0035 1 as I say, she set the post up, she was committed to it. 2 After that, Helen was there and she was doing in the 3 early days such a good job that she took a lot of 4 pressure off the rest of the unit, but because she was 5 quietly getting on with her work and doing what she was, 6 I do not think that the others always recognised her 7 needs. 8 But I was not there. I am only on observation, 9 I used to go in at the weekends and other times, but 10 Helen certainly, in the first two years, I believe did 11 an excellent job. 12 Q. You had been around the hospital for some time by this 13 stage? 14 A. Yes. 15 Q. You did not work there, but you were a well-known face 16 in Ward 5 by this stage, and I think it is fair to say, 17 a respected face as well. Did you ever mention, perhaps 18 on the QT, to some of the managers or clinicians in the 19 unit, "I think you ought to help Helen Stratton, she is 20 under pressure"? 21 A. Probably. 22 Q. Would that be the sort of thing you would mention to the 23 General Manager, for example? 24 A. Yes, I would probably have mentioned it to Fiona Thomas 25 or somebody like that. 0036 1 Q. Would you have mentioned it to one of the senior 2 managers, perhaps? 3 A. No, not to -- 4 Q. To Lesley Salmon? 5 A. I may have done. I cannot recall. We had this 6 presentation each year, I can remember. 7 Q. Would you have mentioned it to Mr Wisheart or one of the 8 surgeons? 9 A. No, I doubt it, because I did not think it was really 10 their worry. 11 Q. But they were the leader of the team? 12 A. Yes, but I was not involved in the team. I was 13 outside. I funded that post, and in fact, when those 14 posts were in position, I withdrew to a certain extent, 15 because I knew there was somebody in a professional 16 capacity working on the unit. 17 Q. As she was in her third year in the post, that is 18 essentially the end of 1992 and into 1993, the initial 19 three-year funding for Helen Stratton's post was 20 obviously coming to an end? 21 A. Yes. 22 Q. How did she feel about the ending of her post? Did she 23 want to continue or not? 24 A. No, well, she wanted to move on to something else. She 25 needed to move on to something else. 0037 1 Q. For her own good, you mean? 2 A. Yes. 3 Q. And you were aware of that? 4 A. That is right. I encouraged her to move on to something 5 else. 6 Q. When did she indicate that she wanted to move on to 7 something else? 8 A. Probably -- her contract should have ended in the 9 October, but she had not found anything that she 10 considered suitable to move on to at about that time, 11 and so, from the good of our hearts, if you like, we 12 extended her contract for six months to give her 13 a chance to find a compatible job. We had felt she had 14 done a good job -- she had been worth the money we had 15 paid out for her. 16 Q. So it was in her interests to move on? 17 A. Yes. 18 Q. The strain having been unbearable? 19 A. Yes. 20 Q. But the role that she fulfilled was a useful one? 21 A. Yes, very. 22 Q. So would it follow that the Heart Circle would be 23 anxious that she would be appropriately replaced? 24 A. Yes. 25 Q. Was she? 0038 1 A. No. 2 Q. Why not? 3 A. I think -- well, when I used to speak, they were not 4 prepared for the funding, and at that time there was the 5 talk, I think, of them being moved -- it was in a state 6 of flux anyway. I got disappointed that they were not 7 going to take on that post, because I felt it had 8 demonstrated it was a worthwhile post. 9 Q. Who is the "they"? 10 A. It would have been Rachel Ferris, I expect. 11 Q. And the "state of flux" was what? What was the state of 12 flux? 13 A. I feel there was talk at that time about moving the 14 services up to the Children's Hospital, but I have no 15 notes. I am just, you know, trying to search back. 16 Q. Leaving all the adults at the BRI? 17 A. Yes. 18 Q. But that was not something that was going to occur for 19 some time? 20 A. April 1995. 21 Q. Yes. Helen Stratton's three years was up in October 22 1993? 23 A. Then we gave her six months to 1994. 24 Q. I think she left actually in February? 25 A. Yes, but the contract could have gone on until six 0039 1 months after October -- May 1994. 2 Q. Mr Langstaff is good at arithmetic. He tells me it is 3 April 1994. 4 A. April 1994, or thereabouts. 5 Q. In fact she left in February 1994? 6 A. Yes. 7 Q. So what happened to this post between February 1994 and 8 the move of paediatric cardiac surgery to the Children's 9 Hospital? 10 A. The post went, and I was concerned that there was no 11 thought of putting it back in place, and I was very 12 concerned that all that she had achieved would be lost. 13 Q. So did you make a fuss about that? 14 A. I did, and I eventually -- I spoke to Dr Gardner and 15 asked her to do research on the needs of families and 16 children, because although I was saying that I thought 17 she had done a good job by and large and I thought that 18 the post had been worthwhile, I had no documentation to 19 prove it, and I felt that the only way forward, really, 20 was to get a research document looking appropriately at 21 the needs of children and their families. 22 Q. And that is a document you have appended to your 23 statement, which I have already referred to? 24 A. That is right. 25 Q. So you hoped that this research you commissioned from 0040 1 Dr Gardner, for which I think you were charged -- 2 A. #11,000 -- 3 Q. By? 4 A. Professor Angelini. 5 Q. Because -- 6 A. Of Dr Gardner's time. 7 Q. Because she was an employee of the Trust? 8 A. She was employed by the British Heart Foundation, 9 I believe, at that time. I am not sure. 10 Q. Attached to the University? 11 A. Yes. 12 Q. As Professor Angelini obviously was? 13 A. Yes. 14 Q. You hoped that this document would indicate that there 15 was a need for this role? 16 A. Yes. 17 Q. If it had been generally accepted that Helen Stratton 18 had done good work in her three years, particularly in 19 the first two years, then it would not have been 20 necessary for the Heart Circle to commission an 21 expensive report in order to prove in that? 22 A. Yes, I think it would. I think that unit was always 23 under-resourced and I think they would still have found 24 it hard to resource the actual post. 25 Q. Perhaps it is important to unpick what the resistance 0041 1 was to replacing Helen Stratton. Was it that her job 2 was perceived as being unnecessary, or was it perceived 3 that it was just, perhaps, necessary but had to take its 4 place in the queue of resources? 5 A. That is right. 6 Q. But if the Heart Circle had been funding her post 7 initially, would it not have been possible for the Heart 8 Circle to have paid for somebody else to replace her 9 through 1994 and 1995? 10 A. We had used up #70,000 by that time, and we did not wish 11 to put any further funding at that time and until the 12 future of paediatric services was resolved, into 13 a further post. 14 So what we did was, we commissioned that research 15 document which proved clearly that the post was needed, 16 and when that was available, the paediatric services had 17 moved up to the Children's Hospital. As a result of 18 that research, we offered to fund a post in the 19 Children's Hospital, which we did, and after six months 20 of that post, the Trust took it over, so it is now 21 a National Health Service post. 22 Q. Can we have a look at UBHT 135/37, please? This is 23 a meeting of something called the Paediatric Interest 24 Group, 6th April 1994. Slightly curiously Helen 25 Stratton's apologies are given to this meeting, but she 0042 1 had actually left by that stage. We see it is attended 2 by Fiona Thomas, Helen Passfield the playleader, Freda 3 Gardner and Steve Pryn, who was an anaesthetist. 4 Can we look at paragraph 1: 5 "Helen's post: 50 per cent funding required with 6 Children's 25/25. The post is being planned. Action 7 will be taken to fill the post in the next few months. 8 Covering Helen's work will be discussed at the Sisters' 9 meeting. Freda will read the job summary which Helen 10 has prepared to ensure that developments will be 11 maintained." 12 A. I have never seen that. 13 Q. Do you remember seeing the summary of her own job which 14 Helen Stratton prepared as she was leaving? 15 A. I cannot recall, but I have certainly never seen that. 16 Q. Were you a party to the discussions which may have taken 17 place among the Sisters about covering or replacing 18 Helen Stratton's work? 19 A. I cannot recall. 20 Q. It looks as if -- 21 A. It looks as though we might have said "If the post keeps 22 going, we will", but I honestly cannot recall. I have 23 no memory, no minutes, no nothing. 24 Q. The "funding required for Children's, 25/25": what does 25 that mean to you? 0043 1 A. I do not know. It does not mean anything to me. 2 Q. Was it ever suggested that funding to continue this post 3 would come from three sources: from the Children's 4 Hospital, from the BRI and from the Heart Circle, 5 divided up? Was that ever suggested? 6 A. I cannot recall. I never had any documentation asking 7 for that, or supporting that. 8 Q. You did tell me about what happened subsequently, when 9 the paediatric cardiac surgery moved to the Children's 10 Hospital, which was very much at the end of the period 11 that the Inquiry is looking at. It is obviously 12 important to know what did happen. 13 What was the position in terms of the number of 14 posts? Was the old Helen Vegoda role and the old Helen 15 Stratton role conflated into one post? 16 A. Yes. We funded, for 6 months, the Helen Stratton role, 17 at the Children's Hospital. 18 Q. It was performed by whom? 19 A. Was it Kathy Selway? I think it was Kathy Selway, and 20 after six months, the Trust took over that position, so 21 they released us from the remainder of the contract. It 22 is still a Trust position. 23 Q. So the position today is that the role which was Helen 24 Stratton's for those three years is now funded by the 25 UBHT? 0044 1 A. That is right. 2 Q. And the Heart Circle, obviously, would still be 3 interested in that role. I appreciate you have been, 4 I think, taking a back seat over the last couple of 5 years, but are you able to comment as to how this new 6 arrangement works? 7 A. It was working brilliantly until Kathy Selway got moved 8 to Australia with her husband. She took maternity leave 9 and she was coming back. An appointment had been made 10 in the meanwhile. When she came back after maternity 11 leave, I was wanting there to be a development of that 12 post to look after adolescents and that was going to 13 happen, but unfortunately -- I do not know the present 14 position, because I have not spoken to anyone this side 15 of the summer, but Kathy, within a month, her husband 16 got transferred to Australia, so she went. So that was 17 unfortunate. 18 MR MACLEAN: Sir, I have nearly finished the questions 19 I want to ask Mrs Pratten, but not quite. I think in 20 fairness to the witness, it might be appropriate to have 21 a small break? 22 THE CHAIRMAN: I think we will take 15 minutes, shall we, 23 and therefore reconvene just before 11 o'clock. 24 (10.45 am) 25 (A short break) 0045 1 (11.05 am) 2 MR MACLEAN: Mrs Pratten, the discussions that took place 3 about the surgery which patients were going to undergo 4 would generally take place at the meeting which we 5 referred to earlier between the surgeon and the parent, 6 usually at the BCH, after the diagnosis and the 7 catheterisation; is that right? 8 A. Yes. 9 Q. So, for example, if a child was to be operated on by 10 Mr Wisheart, he would have a discussion with the parents 11 there about what he was going to do, and the initial 12 idea was, as we discussed earlier, that the Helen 13 Stratton type person would be able to facilitate the 14 parents' understanding of what was being said; is that 15 right? 16 A. That is right. 17 Q. What experience did you yourself have of being present 18 at meetings like that, between the surgeon and the 19 parent? 20 A. I never went to those. I did occasionally sit in at the 21 BRI when a family asked me to sit in with them with 22 Mr Wisheart. 23 Q. How often did that -- 24 A. Going back, in the 1980s, probably, but before Helen 25 Stratton's post, anyway. 0046 1 Q. We discovered I think this morning that in fact Helen 2 Stratton did not go to those meetings? 3 A. I am talking about the ones at the BRI. 4 Q. We have been at cross-purposes. Let us start again. To 5 what extent did you have experience of being present at 6 meetings when surgery was discussed between the surgeon 7 and the parents? 8 A. Only occasionally, prior to surgery at the BRI. 9 Q. What time are we talking about? 10 A. The night before surgery, sometimes. 11 Q. How many years ago would this have been? 12 A. In the 1980s. 13 Q. Before the Helen Stratton role was instituted? 14 A. That is right. 15 Q. Would that meeting be the first time that the risks of 16 surgery would have been discussed with parents? 17 A. As I had not been to the previous meeting, I would not 18 know, would I. I mean, risks were discussed I suppose 19 at that time. I can remember mostly the care with which 20 Mr Wisheart would go through what he was intending to do 21 and draw pictures and things like that, and, yes, I can 22 remember risks being mentioned, but I never knew that 23 years later I would have to remember what was said. 24 Q. I am not asking you about any specific instance. 25 A. I can remember a lot of care and a lot of consideration. 0047 1 Q. These discussions would take some time, would they? 2 A. Yes, a long time. 3 Q. With the aid of diagrams and so on? 4 A. That is right. 5 Q. I think, as I mentioned at the very outset, you gave 6 evidence at the General Medical Council and I think you 7 were asked -- perhaps I could read you the question you 8 were asked. You were asked: 9 "You have told us something about the families' 10 reactions and thoughts about the risks of surgery and so 11 on. How did Mr Wisheart go about dealing with the 12 question of risks with the families when you spoke to 13 them?" 14 You said: 15 "I can always remember saying to families, because 16 I would try and help them to get to know Mr Wisheart 17 a little better before this consultation, so they could 18 be relaxed." 19 So you would have an initial discussion with the 20 parents before meeting Mr Wisheart; is that right? 21 A. I would go through the questions I thought would help 22 them, because if you are very nervous, you forget every 23 question you want to ask. 24 Q. The next sentence of your answer was: 25 "It is very important that the family is as 0048 1 relaxed as possible." 2 A. Yes. 3 Q. "I would always as standard say, 'Mr Wisheart will paint 4 the picture blacker than black' and that is what -- 5 A. I can remember saying that regularly. 6 Q. Why did you say that? 7 A. When I used to say he would paint it blacker than black, 8 because that is a possible outcome. Death is a possible 9 outcome -- a very possible outcome, because all of these 10 children are very sick children. They all have very 11 serious congenital heart problems. I can remember, on 12 occasion -- I would say that to parents whether I sat in 13 on the interview or not; I can remember when I did, he 14 would, in my view, always mention that there was a grave 15 problem, and that is going back, mind, to the 1980s. 16 I would probably go on saying that after that, because 17 I do feel that there is a tremendous risk, and we all 18 had these very sick babies. 19 Q. So say that somebody would paint a picture blacker than 20 black would suggest, would it not -- 21 A. Realistic, though, is it not? 22 Q. -- the view that would be given would be erring on the 23 pessimistic side of the skills as opposed to the 24 optimistic? 25 A. Or making an awareness of the pessimistic side of the 0049 1 skill, yes. I was trying to help them to ask the right 2 questions and to have an expectation that they are not 3 going to come out and say "Tomorrow is going to be 4 a wonderful day", because it could go wrong. 5 Q. To say to somebody that the picture that is going to be 6 painted would be blacker than black, might, might it 7 not, plant in the parent's head the view that the advice 8 or the picture they were going to be given would be 9 a conservative one? 10 A. I think I would sum it up that you have to give your 11 child a chance of surgery, and, yes, hopefully it will 12 be a good result. I think that was the line. 13 Q. If the picture that was painted by the surgeon was, let 14 us say, "The risk to your child is 1 in 10 of 15 mortality. For every 10 times I perform an operation, 16 one of my patients on average will die". If the parent 17 heard that being said by the surgeon and they were 18 conscious of the fact that the surgeon painted the 19 picture blacker than black, might they not be assured 20 that that 1 in 10 was very much at the upper end of the 21 scale? 22 A. I do not think I got very much involved in the 23 percentage line. I do not think that would be a remark 24 I would make. I think it is very easy, at the time of 25 open-heart surgery, that is part of a programme, you 0050 1 have had diagnosis, you have had catheter. This is the 2 end of the programme, and you go in feeling very 3 optimistic. I think suddenly it can hit you very hard, 4 when your optimism is hit by a risk situation that 5 sometimes you have put to the back of your mind. I know 6 that was the case when my child had surgery. I knew 7 that her only chance was surgery. The risk I was given 8 was a 20 per cent one of success. 9 Q. 8 out of 10 would die? 10 A. 80 per cent, yes, and therefore, I learned to ignore 11 percentages because I had to have hope and pray, you 12 know, that it would be a successful outcome. And 13 likewise, you can give somebody 99 per cent opportunity 14 when they go in to have a tooth out or something. You 15 know, percentages are a colour, but I just feel that, 16 yes, it hit you hard that risk -- you have gone through 17 it probably at an outpatients appointment, but it is 18 when you actually get there, into the hospital itself, 19 that you are really hit by the risk of what you are 20 letting your child undergo. 21 Q. When you had this discussion with the parents, would you 22 explain to them who you were and how long you had been 23 around and about the hospital? 24 A. Certainly. 25 Q. And you would be able to impart to them some information 0051 1 about the ethos of the hospital and how it worked? 2 A. I would try. I would never get involved in anything 3 medical. 4 Q. If a parent's child was going to be operated on by, let 5 us take Mr Wisheart as an example, they not having met 6 him before, perhaps, what kind of information would you 7 give them? What would you tell them in order to 8 reassure them? 9 A. I would have said he was a kind, caring man. In my 10 view, that is exactly how I found him. 11 Q. What would you say about any other surgeon? 12 A. Mr Dhasmana the same: a very dedicated surgeon. 13 Q. What about the setup of the hospital, the nursing staff 14 in the intensive care unit? 15 A. In the BRI? 16 Q. Yes. 17 A. I would have said the nursing staff were exceedingly -- 18 when I went in, anyway, I always felt they were 19 exceedingly caring and had tried to get a good rapport 20 with the parent by the child's bed. I was aware 21 regularly of a very caring situation in ITU in the BRI. 22 Q. You were familiar with the intensive care unit in the 23 BRI? 24 A. Yes. 25 Q. Where the children and the adults were taken 0052 1 post-operatively over a long period of years? 2 A. Yes. 3 Q. Who did you feel was in charge of that unit? Who was in 4 charge of the organisation of the intensive care 5 treatment of the patients? 6 A. I do not know. I mean, the senior sister, I suppose. 7 Q. What would the role of the surgeon be after the 8 operation? Would you expect to see Mr Dhasmana -- 9 A. They were there often, at any time. 10 Q. Mr Wisheart the same? 11 A. Yes. 12 Q. What about Dr Joffe or the cardiologists? 13 A. No, they were not there as much. 14 Q. How frequently would you see them in the intensive care 15 unit at the BRI? 16 A. Do not forget, I would not be there all day, I would pop 17 in for half an hour here, half an hour there, often when 18 I was invited by the ward or at weekends when I would 19 try and bring a grant into the family or help them in 20 some way, but I did not often see them on the cardiac 21 surgery unit. 22 Q. How would you characterise the relationship between 23 Mr Wisheart and Mr Dhasmana after Mr Dhasmana was 24 appointed a consultant? 25 A. I think he found the role of being a consultant, having 0053 1 been a Senior Registrar for a long time, very hard. 2 I think an internal appointment was quite hard for him. 3 Q. Do you think that he considered himself to be the 4 "junior partner"? 5 A. Yes. 6 Q. Do you think Mr Wisheart considered himself to be the 7 "senior partner"? 8 A. Not particularly, but I think Mr Dhasmana considered 9 himself very much the junior. 10 Q. Did you consider Mr Wisheart to be essentially the 11 senior partner? 12 A. You have to see my role as somebody who pops in and out, 13 friendly I hope to everybody I meet. Mr Wisheart was 14 somebody I had known since his appointment. Mr Dhasmana 15 I had known, and then he went to America or somewhere 16 else, then he came back, and I was just friendly with 17 both of them and I did not have any consideration 18 between either. I had known them both over a long 19 period of time. I never got involved in the medical 20 side or the politics of their work. I used to, 21 particularly Mr Wisheart, I used to ask him to come down 22 to the branches, for example. He went down to Cornwall, 23 I remember very well, and spoke to the group down there 24 and gave up a couple of days to meet the families down 25 there, which I felt was helpful when these families came 0054 1 up to Bristol, they knew him as a person instead of just 2 as the surgeon. 3 Q. I am not suggesting for a minute -- 4 A. I knew them as people but I did not get involved in the 5 medical aspects. 6 Q. I am not suggesting for a moment you would have treated 7 the surgeons any different? 8 A. No, I had no -- Mr Wisheart I had known longer as 9 a consultant but I would give Mr Dhasmana a hug when 10 I saw him in the corridor because that is what he 11 liked. We had a very warm relationship. 12 Q. To what extent did you have a relationship with the 13 other surgeons who performed adult work? 14 A. I knew them. Mr Hutter, particularly. 15 Q. What was your perception of who made the crucial 16 decisions about the development of cardiac surgery, 17 because over the period that the Inquiry is concerned 18 with, between the mid-1980s and the mid-1990s, the 19 Inquiry has heard evidence of a very significant 20 expansion in a number of open-heart operations at the 21 BRI, both in adults and on children in terms of the 22 percentage increase. 23 You obviously saw that change happen, changes in 24 the intensive care unit, changes in the organisation. 25 Where did you perceive the driving force for those 0055 1 changes to lie? 2 A. I suppose Mr Wisheart. 3 Q. Were you ever aware of the particular impetus given to 4 paediatric cardiac surgery as opposed to adult? 5 A. I was aware in the 1990s that there was very serious 6 consideration of a Chair in Paediatric Cardiac Surgery, 7 but it did not in the end happen, which I really would 8 have been delighted to have seen. I was aware, yes, 9 that there was -- I suppose really I only considered the 10 paediatric aspect of it, and I suppose with the 11 expansion that was why I saw the need for a post of 12 Helen Stratton's sort, a liaison post. It was at that 13 time, too, that we made a designated area of that unit 14 with a mural on the wall and made it more child friendly 15 to try to make it more comfortable for families. 16 Q. That was the nursery? 17 A. Yes, there was a nursery, but there was a part of the 18 intensive care that we made more friendly for children. 19 Q. Did you ever meet Dr Roylance? 20 A. No, never. 21 Q. Or any of the other directors of the Trust? 22 A. No. 23 Q. Did you ever meet Margaret Maisey, for example? 24 A. No. 25 Q. Or Graham Nix, the Finance Director? 0056 1 A. I might have once. We played a very low profile. 2 Q. Was there any other similar organisation primarily 3 concerned with adults such as the Heart Circle was 4 primarily concerned with children? 5 A. No, not really. 6 Q. Was there any similar type of organisation in another 7 specialty in the hospital, for example, cancer or 8 kidneys -- 9 A. I expect so, but I did not get involved with any other. 10 We were a very low profile lot. On our committee, we 11 had consultants, we had nurses, we had social workers, 12 and we all worked together. That is how we looked at 13 our charity, that it was a partnership between the 14 medical people and the families. 15 Q. We talked a little at the beginning about the financial 16 resources of the Heart Circle. It is a charity? 17 A. Yes. 18 Q. It had no income of its own? 19 A. No. 20 Q. Apart from, perhaps, some interest on the money in the 21 bank. Money was raised by volunteers? 22 A. Yes. 23 Q. What were the priorities for the Heart Circle in terms 24 of spending its money? Its purpose was to spend the 25 money that came in? 0057 1 A. We would first identify where we felt there was a need, 2 so in the early days it was for accommodation. 3 So we identified that there should be far better 4 accommodation for families, because in the early days 5 they were put into bed and breakfast in any part of 6 Bristol, so some of them would get a bus in the wrong 7 direction, get terribly lost, terribly worried, terribly 8 unhappy. So our first big project, for us, that we 9 looked at, was accommodation. After that we looked at 10 play, which we considered very important. 11 Q. That was Helen Passfield's role? 12 A. That was Helen Passfield and getting play on 13 a structured basis. I think the hardest job there was 14 to get a room assigned for play, because the hospital 15 did not see the need for a separate area for play away 16 from the "nursery" as it was called, where the sleeping 17 beds were, and then Helen Passfield was put in post and 18 that post is still funded by the Heart Circle and the 19 Children's Hospital, in fact. That has been a very 20 valuable post. 21 Q. What type of financial commitment did that involve? 22 A. Sadly, play workers are not paid very much. I think 23 #10,000 or #11,000. 24 Q. Per year? 25 A. Yes. And then from play we looked at support. And 0058 1 then -- 2 Q. What about the provision of equipment? 3 A. To define "equipment", we would say that it needed to be 4 in the medical interests of the child but beyond the 5 budget of the Health Service. There were small items of 6 equipment that people wanted to buy and that they 7 actually raised money for that you had to always honour, 8 but I can only remember two large pieces -- well, two 9 reasonably large pieces of equipment that we bought. 10 One was a portable Doppler machine that the 11 cardiologists were able to take to all the periphery 12 hospitals before Dopplers were part of the general 13 equipment in these hospitals. I think Dr Joffe had to 14 buy a different car to put the Doppler in the back and 15 they would take it down to Treliske or Taunton or 16 wherever with them, so they had a better means of 17 diagnosis. That was an important piece of equipment 18 that we felt was not going to be funded by any other 19 source. In fact, we had to pay the insurance on that. 20 Q. Why was it not going to be funded by some other source? 21 A. Nobody else was prepared to fund it. So if we felt that 22 a Doppler, albeit a portable one, was a better means of 23 diagnosis in the periphery clinics and would save 24 families having to come all the way to Bristol, then 25 that was a worthwhile piece of equipment to buy. 0059 1 The other big piece of equipment we bought was 2 a large Doppler in the BRI for Ward 5. That was at 3 a cost of #48,000 in total. Dr Jordan suggested we 4 bought that. He felt that it would be very valuable if 5 there was a critical time in the care of a child, to 6 have an immediate Doppler on the ward which could be 7 used by the staff who were trained to use it. 8 The thinking had been that there was a Doppler of 9 this magnitude in the hospital and that when it was 10 needed it would be brought up from the x-ray department 11 with its own staff. This would lead to a delay in 12 bringing it up to the unit, and Dr Jordan really felt 13 that it would be money well spent because it was obvious 14 that the Trust would not buy a second one. I would not 15 totally fund it. On my recommendation, we would not 16 totally fund it, and it was suggested that we 50 per 17 cent fund it with the surgeons' fund. 18 Q. Just help me, Mrs Pratten, if you can with the surgeons' 19 fund. What was the surgeons' fund? 20 A. I am not sure, but it was other money that would be 21 available that did not come out of the Trust. I presume 22 it was their amenities fund or whatever. I felt, and 23 I have always felt this: if the surgeons make 24 a considerable contribution to a charitable donation, as 25 it were, it means they are going to use the equipment; 0060 1 they are not going to throw their money away. That in 2 fact proved the point. We were able to get this quite 3 fast. We put in, I think, #28,000, if I remember and 4 the surgeons put in #20,000. I cannot remember. 5 Something like that. 6 Q. Dr Jordan retired in 1993, I think it was. So we are 7 obviously talking about the period before that? 8 A. He had retired in 1993, was it not? 9 Q. 1993, yes, so obviously we are talking about a period 10 before that? 11 A. Yes. 12 Q. Do you remember when this piece of equipment was bought? 13 A. 1991, something like that. 1992, maybe. I honestly 14 cannot recall. 15 Q. Was it Dr Jordan who explained that the Trust, as it 16 would then have been, was not willing to fund another 17 machine? 18 A. That is right, because they had one in the unit that 19 could be brought up. 20 Q. You yourself were not involved in any discussions with 21 the Trust? 22 A. No. 23 Q. So it was a question of prioritisation, was it, so far 24 as the Trust was concerned? 25 A. Yes. 0061 1 Q. What happened to this piece of equipment when the 2 surgery moved to the Children's Hospital? 3 A. I was very glad to know that while it was there it was 4 very valuable, but when it came to moving to the 5 Children's Hospital, I then had to have quite a lot of 6 discussion, because the Heart Circle had put quite a lot 7 of equipment and amenities into the BRI and we needed 8 some means of remuneration for it. I cannot recall 9 whether we got #4,000 or #5,000 in the end. We 10 certainly got a figure for the Doppler. They would not 11 let it go up to the Children's Hospital because they 12 said they were using it so much for research at that 13 stage, and I said "We have to have some contribution as 14 to its worth". They kept telling me that any machine is 15 out of date the day you buy it, and eventually, we came 16 to an agreement of a sum of money. 17 Q. Can we have a look at UBHT 225/3, please? Let us see 18 the whole letter, first of all. It is a letter to you 19 from -- 20 THE CHAIRMAN: There is an address at the top of the 21 letter. 22 MR MACLEAN: We have passed that now. It is a letter from 23 Mrs Ferris to you, Mrs Pratten. It is dated 1995. Can 24 I just take you to the paragraph beginning, if we scroll 25 down, please: 0062 1 "Professor Vann Jones and I are keen to 2 acknowledge the huge commitment made by you and the 3 Heart Circle in paediatric surgery at the BRI over the 4 last 23 years. We know that the equipment that you have 5 purchased totals many, many thousands of pounds and that 6 the purchase of equipment has been just one aspect of 7 the support you have. It would be helpful if you would 8 let me have a list of some of the things that you have 9 done so that they can be included in the presentation." 10 If we look at the first paragraph: 11 "Thank you for meeting me on 1st December 1995 to 12 discuss the value of equipment that did not transfer to 13 the Bristol Children's Hospital. The pictures in the 14 corridor which were not in my original list have now 15 been included and full details are shown in the attached 16 list. The total value is #4,425." 17 Was that the sum that was, by a rather complicated 18 process, paid back to the Heart Circle? 19 A. It was jolly good to get #4,425 at that stage. They 20 kept saying they did not have the money anyway and 21 eventually it came out of the special trustees and what 22 was done was instead of any money passing hands, they 23 bought a machine for the new cardiac intensive care in 24 the Children's Hospital. 25 Yes. I gave them a list of, I think, the things 0063 1 that I thought had some value, but things -- 2 Q. Including the Doppler machine? 3 A. Including the Doppler machine. We would have had a 50, 4 60 per cent value. I did not know, I could not refer to 5 anything, as to what a three-year old Doppler machine's 6 value was. 7 Q. That was the deal that was done between the BRI and the 8 Heart Circle? 9 A. It was a fight to get that. 10 Q. A fight with whom? 11 A. I said that the Charity Commissioners would expect us to 12 show something for what we had put into the BRI, and, 13 yes, with Rachel Ferris, I think. I think I used to say 14 that I expected some return because we were leaving such 15 a lot in the hospital, anyway. 16 Q. Can we look at 225/10, please? Again, just scanning 17 down the page, this is just a little bit before the 18 letter we have just seen. This is from you to Rachel 19 Ferris: 20 "You give a total amount of #4,000 with no 21 breakdown. I have not been given an inventory of what 22 has been taken up to BCH and what remains in Ward 5. 23 I should be grateful if you could indicate how this 24 #4,000 is made up and what percentage relates to the 25 echo machine", that is the Doppler we have been talking 0064 1 about, is it? 2 A. Yes. 3 Q. "When it was purchased to Heart Circle donated #25,000 4 out of a total cost of #48,000. This information will 5 have to be supplied to the Charity Commissioners, who in 6 1994 expressed their concern to us about the purchase of 7 equipment for hospitals." 8 Is there anything to add to the Charity 9 Commissioners' concerns? 10 A. I think we had to show, like with this Doppler, that 11 there was a second one, but it would be in the interests 12 of the care of the children that there was one on the 13 unit and that they were satisfied with that. 14 Q. Was this the two Doppler machines; were they the only 15 two significant pieces of equipment that the Heart 16 Circle -- 17 A. That I can remember. There may have been more, but you 18 are asking me to go back and I do not have a list and 19 I -- you know. Those are the two that stand out. 20 Q. The report that Dr Gardner produced, if we just deal 21 with that a little, is annexed to your statement and it 22 is at WIT 269/13. 23 If we go over the page to page 14, we see from the 24 second paragraph that the report was based in large part 25 on a questionnaire that had been produced to establish 0065 1 the views of 150 parents who were using the services 2 offered or who had used the services over the last five 3 years? 4 A. Yes. 5 Q. So all the empirical research for this work was based on 6 questionnaires of parents whose children had used the 7 Bristol hospitals; is that right? 8 A. Yes. 9 Q. And, for example, if we go to page 27 of the report, 10 page 269/40, we see at the bottom of the page: "Able to 11 ask hospital staff for information". 79 per cent of the 12 people had said yes, 13 per cent of the people had said 13 no, and 8 per cent were unsure. 14 Page 35, which is WIT 269/48: 15 "Overall satisfaction with the service provided", 16 86 per cent were satisfied and 14 per cent were not. 17 What was the reaction to this report when it was 18 presented by the Heart Circle? 19 A. Freda Gardner presented it. Again, I am going back 20 a bit. I can remember getting the responses from it 21 that as a result of that report, they felt that such 22 a post should continue. I can remember the conclusions 23 from it rather than the actual presentation. 24 Q. We perhaps do not have to go through in it great detail, 25 but let us take as an example WIT 269/45, the second 0066 1 half of the page, please, under the heading "Comments". 2 We see the second one, for example: 3 "Family support worker very good". 4 The one after the next one: 5 "Family support worker was awful. Said the wrong 6 thing at the wrong time." 7 Obviously people are going to differ in their 8 opinions? 9 A. That is right, and it is personality, too. 10 Q. What was the general lesson to be drawn from this 11 research? 12 A. That somebody in post, with special professional 13 qualifications, would be of great value, but always have 14 to take into account that no one person is going to be 15 able to satisfy the needs of every family. 16 Q. What about the particular question of bereavement: 17 obviously the idea is if everything goes well, there 18 will be no bereavements, but there obviously are in any 19 hospital. To what extent did the Heart Circle see 20 itself as being involved in bereavement counselling or 21 support? 22 A. I considered myself to be a friend to anybody I could 23 help, particularly to families I knew, as a friend. 24 I have no qualifications, but we did pay Helen Vegoda to 25 go to Edinburgh, I think it was, on a bereavement 0067 1 course, to give her the opportunity of more training in 2 that field. 3 Q. She went on that course? 4 A. Yes. When I was with the Children's Heart Federation, 5 which is a group of circles like ourselves, and I was 6 talking to them, I was Chairman of that for a short 7 time, about trying to set up a cardiac bereavement 8 group, because I did not feel I was properly qualified, 9 but we did not -- during my time there, we did not get 10 it off the ground, sadly. 11 Q. Mrs Pratten, I want to come to Helen Stratton's 12 statement, paragraph 32, WIT 256/12. Just give us the 13 context by going to the previous page, page 11. 14 Paragraph 29. You have seen this statement, 15 Mrs Pratten; you commented on it? 16 A. Yes. 17 Q. You see from paragraph 29 that essentially Helen 18 Stratton is recording that she had been to the 19 Birmingham Children's Hospital and she had come back 20 with some concerns about what was happening in Bristol 21 compared to Birmingham. You see that she mentions 22 Dr Bolsin, paragraph 30, just at the bottom of the 23 page. Did you know Dr Bolsin? 24 A. No, I met him once with Helen Stratton socially, that is 25 all, but I might have met him on the corridor. I did 0068 1 not really know him. I knew who it was. I would 2 probably say "Good morning", and, you know. 3 Q. What about any of the other anaesthetists? 4 A. Dr Monk was on our Heart Circle committee. 5 Q. So you would have had reason to know him particularly? 6 A. Yes. 7 Q. Were you ever aware of any tensions between Dr Bolsin or 8 any of the other anaesthetists or surgeons? 9 A. No. 10 Q. Let us look at paragraph 31 at the bottom of the page: 11 "Helen Stratton said she expressed her concerns to 12 Fiona Thomas and Lesley Salmon." 13 Then over the page, please, to page 12: 14 "I also raised these concerns with Jean Pratten 15 and I realised this was a clinical issue and not really 16 a Heart Circle issue. I knew it would be difficult 17 raising the subject with Jean as she had known both 18 Mr Wisheart and Mr Dhasmana for a long time and had 19 a high regard for their clinical abilities." 20 We see what is said. 21 Leaving aside your reaction for a moment, can you 22 tell me what you remember Helen Stratton expressing to 23 you by way of concern? 24 A. I can remember her expressing to me her concern at the 25 deaths of babies, and the stress, the emotional stress, 0069 1 she found as a result of that. 2 Q. The time period of this? Is this the period we were 3 discussing earlier? 4 A. I think so, yes. 5 Q. 1993? 6 A. I got equally distressed. Any time over the 25 years 7 I was with the Heart Circle, I always found it very, 8 very hard, particularly as I had been so near it myself 9 with my own child, but I was fortunate. 10 Q. You obviously then remembered the discussion with Helen 11 Stratton? 12 A. Yes. She used to come up. I used to try and help her 13 to express her concern, but I did not feel it was the 14 role of the Heart Circle. I used to say to her, "But 15 you have to take this back to the hospital". 16 Q. To take what back to the hospital? 17 A. Her concerns to Fiona Thomas, I suppose it was. I had 18 no -- I mean, I used to speak to people from Guy's 19 Hospital, for example, from their organisation, the Echo 20 organisation, and they went through times when they lost 21 a lot of children too. It was then that I discussed 22 this cardiac bereavement group. 23 Q. Do you remember Helen Stratton mentioning the length of 24 time that operations were taking at Bristol, or number 25 of babies dying, or both? 0070 1 A. I think operations in Bristol always took a long time. 2 I can remember her being concerned. I tried to give her 3 some support. That is when I brought Freda Gardner in 4 to help me. 5 Q. Because she herself, Helen Stratton, was under pressure? 6 A. That is right. 7 Q. Do you recall Helen Stratton saying to you she had 8 recently been to Birmingham and now had a comparator, if 9 you like; that she, Helen Stratton, understood that 10 operations were taking a much shorter period of time in 11 Birmingham than comparable operations in Bristol? 12 A. Yes, I think I can. I can recollect always thinking 13 that there have been three generations of cardiac 14 surgeons, and my daughter was operated on in the first 15 generation, if you like, the early work of open-heart 16 surgery to cure congenital heart disease. Then I look 17 upon Mr Wisheart and Mr Dhasmana as the second 18 generation. I can remember going to Birmingham about 19 ten years ago, because they were having problems, quite 20 big problems, at that time. It was at that time that 21 they, as it were, came into the third generation of 22 cardiac surgeons. 23 That is what has happened in Bristol now. We have 24 Mr Pawade, who has learned from the previous two. 25 I feel that when I was talking to her about Birmingham, 0071 1 I was saying, yes, they have Mr Braun, who is of the 2 next generation of cardiac surgeon, but I would not make 3 any further comment than that, because -- 4 Q. So in 1993, when you were having these discussions with 5 Helen Stratton, you would have known, for example, that 6 Mr Braun at Birmingham had a particularly good 7 reputation? 8 A. That is right, but prior to that, prior to his coming, 9 they were in trouble. 10 Q. And Helen Stratton's concerns: did they suggest to you 11 that Bristol was in the kind of trouble that Birmingham 12 had previously been in? 13 A. No. 14 Q. Your reaction to Helen Stratton bringing you the 15 concerns was to arrange for Freda Gardner to see and 16 help Helen Stratton? 17 A. Yes, because I felt she needed professional help within 18 the structure of the hospital. 19 Q. And that was obviously of assistance, you hoped, to her? 20 A. Yes. 21 Q. But what about the concerns themselves? Why did you 22 think Helen Stratton had come to you, amongst others, 23 with these concerns? 24 A. But she would come to me quite regularly with her 25 concerns, so any concern that she had, she would bring 0072 1 to me and we just would talk it over. But she says at 2 the beginning, it was a clinical issue and not a Heart 3 Circle issue. 4 Q. But she was under particular pressure at this time? 5 A. Yes, but I tried to help her overcome that. 6 Q. We discussed earlier that your perception was that at 7 that time, there was a larger number of deaths than 8 there was sometimes otherwise, and that a new procedure 9 had been implemented or instituted at the hospital at 10 around that time. 11 Did it not occur to you that Helen Stratton might 12 be looking for some support in taking her concerns 13 forward? 14 A. That is why I introduced Freda Gardner into the 15 picture. There was her support. There was somebody of 16 standing in the hospital. She was then, I think, 17 a research fellow in the hospital, and she was the sort 18 of person to whom she could turn. 19 Q. That might help Helen Stratton to cope? 20 A. But it would also help her to see which direction to 21 take her problems to. 22 Q. One might see that might help Helen Stratton to cope 23 with the number of deaths, but what about doing 24 something to try and reduce the number of deaths? 25 A. I am sure that I saw Freda Gardner's role -- I would 0073 1 take that no further. 2 Q. The Heart Circle was anxious, always had been anxious, 3 not to involve itself in clinical decisions or clinical 4 issues? 5 A. Yes. 6 Q. So to the extent that Helen Stratton was bringing you 7 concerns which, as you saw it, involved clinical issues, 8 looked at more widely than her own problems and coping, 9 would you have advised Helen Stratton as to what in your 10 opinion would be the appropriate place to take those 11 concerns? 12 A. I think I remember she was sharing them with other 13 people in the hospital anyway. 14 Q. Did you know that she was of a similar view to 15 Dr Bolsin? 16 A. Yes. 17 Q. Did she tell you that? 18 A. Yes. 19 Q. What did she tell you about Dr Bolsin? 20 A. I cannot recall: I just knew they were friends and they 21 talked. 22 Q. Did it go more widely than Dr Bolsin and Helen Stratton? 23 A. I do not know. 24 Q. What would you have expected the appropriate route to be 25 for these concerns to be addressed in the cardiac unit 0074 1 in 1993? 2 A. Through the Clinical Directorate, I suppose. 3 Q. Helen Stratton being under that particular pressure in 4 1993, and Freda Gardner assisting her, when she left, 5 then, a year later and was not replaced, by that time 6 was it your perception that this particular number of 7 deaths that you had perceived had ended? Had that trend 8 come to an end? 9 A. I cannot recall. 10 Q. Would you just bear with me for just a moment, 11 Mrs Pratten? (Pause). Just a couple of points in 12 conclusion. First of all, can I take you to 13 UBHT 213/15, please? Can we scan down about a third of 14 the page, please. This is concerned with the annual 15 general meeting of the Heart Circle which was to be held 16 on 5th June 1991 at the Institute of Child Health. 17 Do you see the first new paragraph we can see on 18 the screen: 19 "Following the formal business, Helen Stratton has 20 very kindly agreed to talk about her work on the cardiac 21 surgery unit and the research she is undertaking. This 22 should be an extremely interesting evening." 23 What was the research? 24 A. She never got that off the ground. 25 Q. So the agenda being sent out for the meeting in fact, by 0075 1 the time the meeting came around, there was nothing to 2 report on? 3 A. Probably. That was in her first year, was it not, 1991? 4 Q. What was she intending to research? 5 A. I think, again, I cannot recall. There was something 6 written in that, that she would be looking at the needs 7 of families, that I think came out of the later 8 research. I have not spoken to her about it for so many 9 years that I cannot recall, but I remember it was one of 10 the -- her work was demanding in other ways and that 11 never got off the ground. 12 Q. Is it fair to say that Helen Stratton struck you 13 initially as being somebody who had enthusiasm for the 14 role she had been given and was excited about the 15 possibilities of it? 16 A. Yes. 17 Q. Was it your impression that her enthusiasm waned under 18 the stress of the job? 19 A. Yes. Well, I think the pressure of work and -- yes, 20 I think so. 21 Q. By the time that Helen Stratton had come to you in 1993, 22 would you say that it was obvious from her demeanour and 23 what she was saying that she was under great stress? 24 A. Yes. 25 Q. So it would have been obvious to those with whom she 0076 1 worked closely? 2 A. It should have been. 3 Q. I think I may have asked you this earlier: did you ever 4 go to Mr Wisheart, for example, and say "Helen Stratton 5 is under severe pressure, she needs help"? 6 A. No, I do not think I did. 7 Q. Did you ever mention to any of the clinicians or any of 8 the managers that she had brought you these particular 9 concerns in 1993 and that she was really, to put it 10 colloquially, at her wits' end? 11 A. I cannot recall. 12 Q. What you did was to put her in touch with Freda Gardner? 13 A. That is right. I thought I had done something positive 14 to help her, which I had. 15 Q. So you saw yourself presented with a woman who needed 16 help and took what you thought was appropriate action to 17 ensure she got the help she needed? 18 A. That is how I saw it. 19 Q. I have asked you a number of questions. There may be 20 some matters I have not, as far as you are concerned, 21 dealt with. Is there anything else arising out of my 22 questions or in general that you would like to say to 23 the Inquiry at this stage? 24 A. I do not think so. You will realise we are a very small 25 organisation that always try to do our best for the 0077 1 children and their families coming to Bristol and none 2 of us was professional; we had not even a professional 3 Secretary. We all gave our time in our own way and did 4 the best we could in our own time, and there were a lot 5 of demands on us, as you can see have come out from this 6 examination. I was not qualified in any way, and tried 7 to find somebody who was to answer any problems that 8 there were. 9 MR MACLEAN: Mrs Pratten, it may be that Mr Allingham, your 10 solicitor, may have some re-examination, but just before 11 we discover whether he has, it may be that there are 12 some questions from the Panel. Mrs Pratten, for the 13 moment, can I thank you very much for the evidence you 14 have given to me? 15 THE WITNESS: Thank you. 16 THE CHAIRMAN: Thank you, Mr Maclean. Yes, there are some 17 questions. Mrs Maclean? 18 Examined by THE PANEL: 19 MRS MACLEAN: Going back to your conversations with 20 Helen Stratton when she was under stress and strain and 21 raising her concerns about increased mortality, did she 22 mention the switch programme to you in that context? 23 A. She may have done. I mean, she mentioned the babies, 24 particularly I can remember. I cannot recall. I mean, 25 it is quite a while ago now, and I tried to always help 0078 1 her to take her professional issues into the hospital. 2 THE CHAIRMAN: Professor Jarman? 3 PROFESSOR JARMAN: Just one question: In paragraph 41 of 4 your witness statement on page 11, you say: 5 "I am certain that children's paediatric surgery 6 at the Bristol Royal Infirmary was never properly 7 resourced and funds eventually only became available 8 when the crisis arose." 9 A. Yes. 10 Q. You have a lot of experience of heart surgery, your 11 daughter survived and you have been around the BRI for 12 a long time. What was it that made you so certain about 13 that? 14 A. Well, over the years we talked about paediatric surgery 15 being sent up to the Children's Hospital, and it was 16 always a matter of resources that it never happened. 17 I can remember when Martin Elliott from Great Ormond 18 Street was interviewed for the post of Chair of 19 Paediatric Cardiac Surgery, and I can remember him being 20 very interested in the post, but there was not going to 21 be an integration of services. To me, you cannot have 22 a post of paediatric cardiac surgery in the BRI and in 23 the Children's Hospital. There had to be an 24 integration. 25 Over the years, as I say, a number of times 0079 1 Dr Jordan, I know, did a very in-depth piece of work on 2 trying to bring it all up together. I can appreciate in 3 the early days you needed a heart unit where the nurses 4 were specialised in heart surgery, but it had been 5 looked at in depth but it never happened until this 6 moment when the money suddenly became available. 7 There are aspects, the funding brought about with 8 it a new intensive care, and other amenities at the 9 Children's Hospital, but there were no resources even 10 then to provide a cardiac unit, a cardiac ward for the 11 children and their families. I tried to get that 12 established in the Children's Hospital, because I found 13 it so good in the BRI, where the families were together 14 so that they could support one another. When it moved 15 up there, the children would go into a general surgical 16 ward. 17 So the resources all along have been a problem, 18 I am sure. 19 Q. But just to take your observations, you probably were in 20 and out at least once a week, I should think? 21 A. Yes. 22 Q. Were there any general observations of anything to do 23 with the set-up or anything like that? 24 A. Well, yes. If you read my statement and what the Heart 25 Circle provided over the years, I think I worked out 0080 1 that nearly 1m was put into that unit by our 2 observations and trying to put things right. I mean, 3 I can remember when they were operating on younger 4 children, babies, and we were asked if we could help 5 provide a babies' bathroom, something as basic as that, 6 a play room, pots, even, and beds for parents to sleep 7 in by the cot. 8 Q. And Moses baskets? 9 A. Moses baskets, a quiet room. The quiet room was not 10 a particularly quiet room, but it was somewhere where we 11 made it as nice as we possibly could into an area where 12 you could go quietly. That was something that we 13 identified, but we had no funds. I think one of the 14 most important things we did was the video we did, which 15 was enabled to be sent out to families before the child 16 was admitted so they could show the neighbours and 17 grandparents and everybody else the people they were 18 going to meet when they came to this strange hospital. 19 No, I think we funded so much that should have 20 been part of the Trust, that if we had not funded, might 21 not have happened. That is what I tried to show in my 22 statement. 23 PROFESSOR JARMAN: Yes, thank you very much. 24 THE CHAIRMAN: I have one question, which may follow on from 25 what you have just helpfully told Professor Jarman. You 0081 1 say that 1m of money, to use your words, to "put things 2 right". That implies that they were not right. You may 3 want to consider those words you used? 4 A. By "right", to put things as friendly as possible for 5 the families. There would have been a service, there 6 would have been a room, there would have been an area in 7 intensive care. But by "putting things right", I hope 8 I am saying, making things more comfortable, more for 9 the children, better facilities for them. 10 We put at least one computer in a play room for 11 the children. That was wonderful because it took their 12 minds off why they were there. They would play on that 13 a tremendous amount. The play leaders were tremendously 14 helpful in preparing the children for surgery. I do not 15 think they would have been so well prepared if the play 16 leaders had not had the time and the dolls and the 17 needles to show them what was going to happen through 18 play. 19 Q. Drawing on your very considerable experience, when you 20 saw that paediatric surgery, to quote your words, was 21 "never properly resourced", did it ever occur to you to 22 think, "Perhaps they should not be doing this surgery 23 here, it should be done elsewhere"? 24 A. No, it never did. It never did. Because, as I say, 25 I came from the pioneering days when there was no 0082 1 resource. But literally, in my daughter's time, she had 2 a cubicle in the children's orthopaedic ward. It was 3 chaos. Intensive care was a two-bedded side ward, and 4 willy-nilly, it was needed the next week and it was 5 jolly lucky if you were able to postpone next week's 6 surgery if your child was not well enough to get out of 7 it. I had seen things progress, so, you could say, 8 I went along with the times. That is what I am trying 9 to say. A lot of the remarks I make are in retrospect 10 anyway. You look back and say "it could have been so 11 much better". 12 Q. Can I use an analogy and press you a little bit. The 13 analogy would be that you can remember Dunkirk and 14 things have come along since then. My question is, in 15 the mid-1980s and early 1990s, was there any reason 16 still to contemplate a Dunkirk type situation when there 17 were lots of other places where that did not prevail? 18 A. I did not see other places. I only knew Bristol and 19 I could see that the cardiac unit was opened in 1972, 20 then it was expanded again after that. I went along and 21 did my best for it, on behalf of the Heart Circle and 22 our committee, we did our best for it. As I say, we 23 were all giving our time, we were not there on 24 a full-time basis. 25 THE CHAIRMAN: Thank you very much. Mr Allingham? 0083 1 MR ALLINGHAM: I have no questions, thank you. 2 THE CHAIRMAN: Thank you very much, Mr Allingham. 3 Mrs Pratten, thank you for helping us this morning. You 4 have helped enormously and we are very grateful to you. 5 If there are other matters you recall and if there are 6 other matters you later do recall or wish to tell us, we 7 will be here for a while and we will be grateful to hear 8 from you on any matter, but for today, thank you very 9 much indeed. 10 MRS PRATTEN: Thank you. 11 (The witness withdrew) 12 MISS GREY: Sir, our next witness this morning is 13 Mrs Helen Vegoda, who is currently the counsellor in 14 child and family support at the Bristol Children's 15 Hospital. 16 She is represented today by her counsel, Mr Mark 17 Whitcombe. 18 If Mrs Vegoda would like to come forward, please? 19 Mrs Vegoda, we have been taking evidence on oath 20 or affirmation in the Inquiry, so could I invite you, 21 please, to stand to do that? 22 MRS HELEN VEGODA (SWORN): 23 Examined by MISS GREY: 24 Q. Thank you very much. If we could have on the screen, 25 please, WIT 192/1, this is the first page of a statement 0084 1 which you have given to the Inquiry; is that right? 2 A. Yes. 3 Q. If we turn to page 10, that is the last page, there at 4 the bottom, as there has been on every page, is your 5 signature, verifying that the contents of this statement 6 are true to the best of your knowledge and belief. That 7 is right, is it? 8 A. Yes. 9 Q. Mrs Vegoda, you at the moment are, as I said in the 10 introduction, the counsellor in child and family support 11 at the Children's Hospital in Bristol; is that right? 12 A. Yes, it is. 13 Q. But in 1988, you took up a newly created post of 14 counsellor in paediatric cardiology? 15 A. Yes. 16 Q. You held that post until when? 17 A. 1996. It was September. 18 Q. You may need to speak up just a little bit, I think, for 19 the sake of the stenographer and also our audience. 20 Can you just help us by defining what you 21 understood that role to encompass when you first took 22 it? 23 A. I understood it was quite a complex role, because it 24 involved the emotional and psychological support and 25 counselling to families. It involved giving 0085 1 information -- I hasten to add, not medical information 2 but other supportive information. It involved being 3 there as a very general support at times of stress. It 4 involved what I would have called "orientation", helping 5 parents to know what facilities were around in the 6 Children's Hospital in Bristol. It had a liaison 7 element to it in terms of the community, and there were 8 certainly other aspects, but I think at that time those 9 were probably, possibly, the main ones. 10 Q. We will come back to those, if we may, in further 11 detail, but at paragraph 2 of your statement, back on 12 page 1, you set out there the details of your previous 13 experience and also qualifications to take up this post 14 in the first place. 15 You mention that you undertook child psychotherapy 16 training. Can you tell us what qualification or formal 17 status, if any, that work led to? 18 A. This was a training that I undertook at the Tavistock 19 Clinic in London. My intention had been to qualify as 20 a child psychotherapist and the course itself is split 21 into two. There is, I think it was two or three years 22 pre-clinical, and then I had to go for selection on to 23 the clinical part of the course, for which I was 24 selected. There were only very few people selected and 25 I was selected. I undertook the clinical part of the 0086 1 training, which meant a personal analysis, for, I think 2 it was a further two years, at which stage I decided of 3 my own volition that I did not want to continue with 4 this course. I felt this was not right for me and there 5 were other considerations about how long it was going to 6 take. 7 So I stopped that course. So I have not actually 8 got a qualification in child psychotherapy, but 9 a considerable amount of training during that. 10 Q. You mention training between 1981 and 1986. Is it 11 right, then, that you were engaged on that training 12 throughout a five-year period? 13 A. Yes, but it was not a full-time training. I am sorry, 14 I should have said that. 15 Q. You do say that in your statement. You say at the 16 time you were also employed as a trainee child 17 psychotherapist? 18 A. For two years, but prior to that appointment, I was 19 doing this course part-time. I was also working in the 20 Child and Family Psychiatric Unit. 21 Q. You then go on to say that you spent two years working 22 with Mind, the national charity for mental health? 23 A. Yes. 24 Q. What was your role there? 25 A. I was a regional administrator for the whole of the 0087 1 South West, and that involved part answering the phone 2 to people who had particular questions about mental 3 health and worries about mental health, giving out 4 information, and also working in the office, helping as 5 administrator to the director, and also serving the 6 regions in terms of meetings and producing the 7 newsletter. 8 Q. It was not then a hands-on job in terms of working 9 directly with families and children? 10 A. Not that particular job, no. 11 Q. How much experience had you had in that before you took 12 up your post at the Children's Hospital? 13 A. I did that job for two years. Prior to that, I had 14 worked for in total about 11 years in a Child and Family 15 Psychiatric Unit, which was part of a hospital in the 16 West Midlands and that was very much hands-on work with 17 families. 18 Q. Was that at the point when you had obtained your social 19 worker qualification and were working in that capacity 20 in the Child and Family Psychiatric Unit mentioned in 21 the statement? 22 A. No. What had happened was, I had been working as 23 a teacher. I had then moved and was interested to get 24 into other fields; and had an interview and was invited 25 to join the Child and Family Psychiatric Unit, in fact 0088 1 as a therapist and as a, I would say, a more psychiatric 2 social worker, but the only way in which I could 3 actually be paid was for me to get a qualification in 4 social work. I am sorry, it sounds rather complicated. 5 I was actually seconded to a social work course, came 6 back to this unit and then worked there for another 9 7 years. 8 Q. Never mind the details of the qualifications or the 9 formal title. What was your role across those 9 years 10 in that unit? 11 A. I worked very closely with both adults and children, as 12 I would -- the expression that was used was 13 a "therapist". We were asked to be called therapists, 14 and a lot of my role was -- the children were actually 15 referred, because they had some sort of psychiatric or 16 psychological problems, and it was a whole range of 17 problems. Then I worked as one of a team of people 18 doing an assessment of what the problems were and the 19 family background, and then working with either the 20 parents or the children, often in very long-term 21 commitments, several times a week over a number of 22 years. That was the main part of the work. 23 Q. If I look at the bottom line of this page of your 24 statement, you say there that you had various training 25 and qualifications, including qualifications in 0089 1 bereavement counselling following a course with CRUSE. 2 Can you be more specific about the details of the 3 counselling qualifications you obtained? 4 A. Can I just mention CRUSE first of all? 5 THE CHAIRMAN: Can we go over the page, please? 6 MISS GREY: I am sorry, page 2, please. 7 A. CRUSE in Birmingham organised a bereavement course which 8 I think was over about 6 months; I am sorry, I cannot 9 remember exactly how long. That was not a full-time 10 course. I was particularly interested in the whole area 11 of bereavement counselling, so I took that course, but 12 I also did a training and subsequently became a member 13 of the West Midlands Institute of Psychotherapy. I am 14 not sure whether that still exists. That was actually 15 part of Birmingham University. They did a training 16 course which was over two years, I think it was. I did 17 a qualification with them. 18 Q. When was that? Prior to your appointment at the 19 Children's Hospital; is that right? 20 A. Oh, yes, quite some years ago. 21 Q. If we look at WIT 192/113, paragraph 6, these are your 22 objectives for the coming year in I think 1992. If we 23 scroll down a little bit we see the date of October 24 1992. 25 There is a mention there of a course, paragraph 6, 0090 1 "Developing skills and working with bereaved 2 families". It mentions that you have managed to find 3 funding for a course on this matter at the end of the 4 year. Which course was that? 5 A. I am a little perplexed by that. In fact, I think it 6 refers to a conference that I went to. I may be wrong 7 on this, but there was an international conference in 8 Edinburgh over about five days, a very intensive 9 conference, and I believe that is what it was referring 10 to, because I do not remember doing a subsequent course 11 in bereavement counselling. 12 Q. But in fact the bereavement counselling course with 13 CRUSE that you mention in your statement preceded your 14 appointment to the Royal Infirmary? 15 A. Yes. Could I just add, within my job in the Child and 16 Family Psychiatric Unit, I also worked with parents or 17 children who may have been bereaved, so I did have some 18 experience in that. 19 Q. As a person with counselling or supportive skills, are 20 you a member of any professional body that is relevant 21 to that sphere, such as, for instance, the British 22 Association of Counsellors? 23 A. No, I am not a member of that. I am a member, and 24 I have been for many years, of the Bristol Association 25 of Psychotherapy. 0091 1 Q. One person who has given us evidence to the Inquiry, the 2 mother of Dafydd Thomas, said to us that one of your 3 comments to her during the time she saw you, was that it 4 was not your role to provide medical counselling. 5 Can you just tell us what you saw as the 6 boundaries of your proper role in work with families? 7 A. In relation to medical counselling? 8 Q. In relation to what you understood by support or 9 counselling where one stopped, the other started, and 10 what your role was in relation to both of these. 11 A. I do not think it is terribly easy to be very rigid 12 about this, because I think there is a continuum from 13 counselling through to support, and it does not stop at 14 a particular point. 15 What I was very careful not to do was to, what 16 I would say, counsel in terms of medical information 17 because I did not have that background. The counselling 18 that I gave, the emotional support I would give, was, 19 for example, there were certain particularly key points 20 for parents that were emotionally extremely stressful 21 and, for example, the diagnosis or a child going for 22 a catheterisation or surgery, or at other points like 23 that, and quite a bit of my counselling and support 24 would be to try and be around at those key points and to 25 give parents space to allow them, or may be facilitate 0092 1 their emotional response at those times, to be there to 2 listen to them. 3 But I would see that as different from any input 4 in terms of the actual medical content. 5 Q. Because you came to this post without any formal nursing 6 background? 7 A. I had no nursing background at all. 8 Q. And no medical qualifications? 9 A. No. 10 Q. Do you think that that imposed any limitations on your 11 role? 12 A. That is not an easy one to answer. I was very clear, 13 when I came into the post, that I would not be expected 14 to understand the details of congenital heart disease 15 and therefore there was no way in which I could guide 16 and explain to parents, and therefore I focused in very 17 much and tried to identify the areas where I had the 18 background and could help. But it is true to say that 19 there would have been gaps for parents from myself in 20 terms of helping them to understand the medical side. 21 In order to do that, what I would do, if I met 22 parents who clearly were confused or did not understand 23 something, I would try and liaise with, say, nursing 24 staff or medical staff, so that they could explain 25 that. 0093 1 Q. We will come back to this in a little more detail, but 2 how were you able to judge whether parents had properly 3 understood the details of their child's condition, or 4 the options that were being offered to them? 5 A. Well, it is a combination of what I heard myself, and as 6 time went on, I became more familiar with some of the 7 language that was used, and also, very much checking out 8 with parents. I mean, if, for example, I was ever there 9 when there was a diagnosis or surgery was explained or 10 a procedure was explained, I did always ask the parents, 11 or I hope I always asked the parents, you know, "Did you 12 understand what was being said? Is there anything you 13 are confused about or you want to go back over, or you 14 want repeated?" 15 To an extent, because I did not have the 16 background of everything myself, I suppose there might 17 have been instances where the parents said they did 18 understand and possibly they did not. But I think with 19 time, possibly I was getting more information as well. 20 Q. Did you ever ask them questions about the diagnosis or 21 the treatment that were designed to elicit whether or 22 not they had understood or test their understanding? 23 A. I cannot recall that I did. I hope I would not have 24 done, because I do not think it would have been 25 appropriate within my role. 0094 1 Q. If we go back to your statement at page 2, paragraph 5, 2 you talk at the bottom of that page of meeting families, 3 perhaps on admission, but generally a little later, 4 within one or two days, and then you go on to say that 5 you provided emotional and other support -- if we can 6 turn over, please -- at key times during the child's 7 admission. 8 You also talk about giving practical support to 9 parents, sometimes, for instance, on matters such as 10 obtaining leave of absence. 11 So throughout your statement, you talk both about 12 emotional support and practical support, but you do say 13 little about counselling. 14 Can I just press you a little further as to what 15 you mean or what you would understand by counselling, 16 and the point at which emotional support stops, 17 counselling starts and what your attitude was to that 18 division? 19 A. If I could think about support first, for example, 20 I tried very hard to be there for families when a child 21 went for catheterisation, because I think as 22 I mentioned, that was a very stressful time. I was with 23 the parents when the child went into the catheter lab. 24 When the child had actually gone in, if the parents 25 wanted me to be around, I would come out with them, 0095 1 often take them back to my room and they were often 2 upset. At that point I saw that as support, because 3 I felt they just needed somebody with them. They often 4 were in tears, they needed someone to make them a cup of 5 tea, and I think that was pure support. 6 But counselling might come in, for example, if 7 I met a family where the child had been newly diagnosed 8 and the parents, for example, were saying things like, 9 you know, "It is my fault" and "I feel very guilty", or 10 they were very angry about the child having 11 a condition. Then I would try and use my counselling 12 skills, because I would try and help them to see that 13 that was not so, you know, that although it was very 14 normal, very rational that they had these thoughts and 15 a lot of parents did, they had no need to. I felt the 16 counselling was helping them to come to terms and accept 17 what was normal, and also to deal with it. 18 Q. Because if we look at paragraph 9 of your statement, you 19 use another expression. Paragraph 9 is at page 4, 20 please. It is down at line R. You say: 21 "I would usually have met the families first at 22 the Bristol Children's Hospital where I would have 23 provided primary counselling." 24 Can you just explain what you meant in that part 25 of your statement? 0096 1 A. I think probably what I intended to say there was that, 2 for example, if I met them at the diagnostic stage, or, 3 again, at the first time they actually came into 4 hospital, my role would have been a mixture. There 5 would have been a counselling aspect to it, there would 6 have been support. 7 So I think I was using it rather as a generic term 8 in that statement. 9 Q. Not as a technical term on the form of counselling? 10 A. No, I am sorry, I think that is slightly misleading. 11 I meant it to encompass the generic idea. 12 THE CHAIRMAN: Miss Grey, I wonder whether this is a good 13 point, you will tell me if it is not, where we might 14 have a break for, say, half an hour, and reconvene 15 at 1? 16 MISS GREY: Yes, I am entirely happy with that, if 17 Mrs Vegoda will put up with the interruption. 18 MRS VEGODA: I am in your hands. 19 MISS GREY: Thank you. Shall we reconvene at 1 o'clock, 20 then? 21 THE CHAIRMAN: Thank you very much. 22 (12.32 pm) 23 (A short break) 24 (1.05 pm) 25 MISS GREY: Mrs Vegoda, before our brief lunch break we were 0097 1 talking about the distinction between support and 2 counselling and where you move from one to the other. 3 Perhaps still looking at that, we could look briefly at 4 your new role, the one you took up in 1996, which you 5 mention at page 5 of your statement, paragraph 11. 6 You say there that you took on a new role of 7 counsellor in child and family support. That gave you 8 a title "counsellor" for the first time; is that right? 9 A. No, I was a counsellor in paediatric cardiology. That 10 was my on-the-job description, that was my official 11 title. 12 Q. So in this case, then, in this new role, you moved out 13 of the specific area of cardiac services more broadly to 14 child and family support across the hospital? 15 A. Yes. 16 Q. How do families access your help now? 17 A. Now? 18 Q. Yes. 19 A. Leaflets are sent out to parents from admissions, if 20 they have any general queries or need general support, 21 so I do get some phone calls before parents actually 22 come into the hospital. I also get admissions lists 23 every week and I look down and just see if there are any 24 particular families that I think might possibly need my 25 help. 0098 1 Q. How can you judge it from an admissions list? 2 A. First of all, there are some areas I do not cover, such 3 as oncology and cardiac these days; and again, I can see 4 under which consultant the child is coming to the 5 hospital -- 6 Q. Can I ask you why you do not cover oncology and cardiac 7 services now? 8 A. Because they have their own support systems, and the 9 intention of this post was to offer some support and 10 counselling and help to families where there is nobody. 11 Q. So you can exclude some families as covered by another 12 service within the hospital? 13 A. That is right, yes. But to a large extent, I do what 14 I call my own ward round. I actually go around quite 15 a number of the wards in the hospital every day -- this 16 is from nursing staff -- and just check whether there 17 are any families that would like my help or any 18 particular concerns, and I do also get referred families 19 from different sources. 20 Q. So essentially you rely, is this right, on the nursing 21 staff to either point out to you families that may be in 22 need of some attention or assistance from you, or might 23 like an initial contact, or to refer to you families who 24 might already have expressed such a desire? 25 A. That is only one source. It is quite a valuable source, 0099 1 because nursing staff know their families very well, but 2 obviously I do get referrals from consultants, from 3 chaplains, from social workers, you know, from other 4 sources. 5 Q. I think what I was driving at is that the service that 6 you provide now appears to have changed to one being 7 based on referral pattern, rather than by you directly 8 contacting families in the first instance? 9 A. Yes. I think the term "referral" makes it sound rather 10 formal. To the extent that I cover a very wide area and 11 therefore obviously I cannot know which families might 12 need help, and I cannot do anything routinely, I refer 13 to the nursing staff, but it is very often a matter of 14 either somebody going through the Cardex, or just an 15 informal chat. So referral in that sense. 16 Q. How do the nursing staff, or the consultants, perhaps, 17 know or decide which families they might think you 18 should come and visit, or have some contact with? 19 A. You are talking about now? 20 Q. Yes. 21 A. It depends on the needs of the family. I can be brought 22 in where there is a need for emotional and social 23 counselling and support: for example, if there is 24 a child with quite a severe condition or the prognosis 25 is not very good, or it might be a family that, say, 0100 1 a single parent is on their own in Bristol for the first 2 time, and who is very anxious. So I can be brought in 3 for lots of different reasons. 4 Q. Has any guidance been offered to staff or training given 5 in which families might be at most need of your 6 assistance? 7 A. This post was set up very carefully with the managers 8 myself, and bringing in the nursing staff, so I went 9 with my manager to speak to various nursing sisters and 10 consultants to discuss with them the sort of role that 11 I would be fulfilling, the sort of families that might 12 benefit from my help, and also, I do a lot of continual 13 work in making sure that personnel in the hospital know 14 that I am around. So I am quite proactive. 15 Q. I was wondering whether or not staff were trained or 16 assisted to be able to make any sort of risk assessment, 17 whether formal or informal, of the families that were 18 most at need of assistance? 19 A. I am not sure if I can really answer that. I do not 20 know whether they would have actual training. My 21 experience is that a lot of nurses are very sensitive 22 and very aware of the needs of parents and they know 23 their families very often. Therefore, they would know 24 the sort of family to refer to me. But of course it 25 comes the other way. Families do sometimes ask to see 0101 1 somebody, or come and knock on my door. So it is 2 a two-way process. 3 Q. But if there is limited time to cover and provide 4 support to families, and realistically that is likely to 5 be the case; is that right? 6 A. Yes. 7 Q. Then how do you go about ensuring that there is equality 8 of access or equity of access between families so that 9 those that have the same level of need can be provided 10 with the same level of service? 11 A. That is not an easy question. 12 It does vary. There are certain weeks when there 13 are a lot of families under my care, or who are referred 14 to me as new families, and then I just have to 15 prioritise. It would partly depend on the families 16 themselves. Not all families want me, even though, on 17 paper, it looks as if they need counselling and 18 support. So it would depend partly on the response 19 I get and how much the families feel they need me. 20 It might depend whether there are families in for 21 a long time. Some of our families unfortunately are in 22 for weeks or months, so I would try hard to see those 23 families at least every day, just popping in, but 24 prioritisation, I suppose, is something I have developed 25 over the years. 0102 1 Q. If we go back, then, to your post as it was conceived in 2 1988, and when you were first appointed: first of all, 3 who appointed you to the post? Perhaps I should say, if 4 it is less difficult, first, who was present at your 5 interview for the post? 6 A. The formal interview itself, I cannot remember 7 everybody, but certainly the sadly now late Professor 8 David Baum was there. I believe Mr Wisheart was there. 9 I think Dr Joffe was. Jean Pratten certainly was, and 10 I think there was somebody else from the Heart Circle. 11 I think Hugh -- I have forgotten his surname, he is 12 a psychiatrist, was there, who is still in the hospital, 13 I am sorry, I cannot recall his surname. I believe 14 there was somebody there from social work. I mean, 15 there were a lot of people on the Panel. 16 Q. Did you consider your post to be one that had been 17 created by the hospital, or rather its predecessor body, 18 the District Health Authority, or by the Heart Circle? 19 A. There seemed to be some sort of partnership. I am not 20 sure it was either one or the other. May I just say how 21 the post was created as far as I was aware? 22 Q. Please do. 23 A. I in fact knew Dr Joffe and he telephoned me one day and 24 discussed the idea that he wanted to help create a post 25 that would support the needs of parents, of families. 0103 1 I believe he asked whether I would come in with 2 a meeting with Jean Pratten. I think Professor David 3 Baum as well. This was a fairly informal meeting, just 4 to look at the idea of setting up such a post. 5 I did that. I cannot remember details of it, 6 other than I put in some ideas from my work with 7 families. Then there was the formal application and the 8 formal interview. I always understood that the post 9 was, I believe, part funded by the Heart Circle for, 10 I think, two years, but was also part funded by the 11 Health Authority. 12 Q. If the initial genesis of the post, or your involvement 13 with it was arising out of personal contact from 14 Dr Joffe, and there was an initial discussion of the 15 post at that stage, was that followed by a formal 16 advertisement for the job? 17 A. I ought to clarify that. My understanding was that 18 Dr Joffe had already discussed the idea of having some 19 sort of support counselling role, which I believe he had 20 already discussed with Jean Pratten, and possibly other 21 people. I think he was really picking my brains at that 22 stage. I do not even know whether he was aware that 23 I might apply for it. I think he was actually picking 24 my brains. Then the next thing I knew was that there 25 was going to be a formal advert and an interview. 0104 1 Q. If we look at WIT 192/119, this is the service 2 specification for the job and if we scroll down the 3 page a little, we see there that the post is now funded 4 but it was set up, as you recollected, partly funded by 5 the South West Heart Circle. 6 Then you have written out this description. You 7 say that in all matters of clinical responsibility and 8 accountability, you were supervised by Dr Joffe. 9 What about in matters of non-clinical, managerial 10 matters or organisational matters? 11 A. My recollection was that when the post was first set up 12 in 1988, I did not have a formal management structure 13 from the Health Authority. That only came into place, 14 I believe, in something like 1991 or 1992, when Julie -- 15 her name was Crowley, then Julie Vass -- came into post, 16 and then I had a very formal management structure. 17 Jean Pratten saw me very regularly for the first two 18 years while I was part funded by the Heart Circle, but 19 her role was supportive, informative, rather than 20 supervisory. 21 Q. Whom did you see yourself as accountable to, or 22 responsible to? 23 A. Certainly Dr Joffe and the Health Authority. 24 Q. If we look at the date of this document, it appears at 25 page 121. We see there 22nd November 1990. Can you 0105 1 recollect this document at all? 2 A. I recollect the document. I cannot really remember 3 exactly the circumstances in which I helped to write 4 that. That would have been with a manager, certainly. 5 Q. You are anticipating my question, whether or not you can 6 remember the circumstances that led to producing this 7 service specification. 8 A. I cannot exactly. I can only imagine that it must have 9 been linked somewhere to Helen Stratton's appointment 10 and therefore changes in the service, because it would 11 certainly be exactly the same time that she started. 12 Q. Yes. If we look at the bottom of the second page, that 13 is page 120, we can see there you are discussing the 14 fact that there have been some changes in the role since 15 the appointment of Helen Stratton; if we flick over the 16 page, back to page 121, you spend less time on Ward 5 17 than previously and the aim is therefore to up the 18 contact with families at the BCH because you have got 19 rather more time there than previously. 20 What was your working relationship, then, with 21 Dr Joffe, to whom you were clinically responsible? 22 A. I had a very good working relationship. I have given 23 a lot of thought to his role and the sort of supervision 24 I got, and I think I was aware, possibly even at the 25 time although not so much as now, that quite a bit of 0106 1 our supervision was probably to do with families and 2 looking at the needs of families, perhaps specific 3 families, but probably did not cover the area of coming 4 into a new post and the needs of the post and the needs 5 of the team, and probably it was rather narrow. With 6 hindsight, perhaps it would have been helpful to have 7 had it broader. 8 Q. In what ways were you assisted by Dr Joffe? 9 A. I mean, I felt he was very aware of his families. 10 I think he was very aware of the emotional and the 11 stress factors on them. That is what we talked about. 12 We obviously talked about different children's 13 conditions and who was coming in and what the needs of 14 those families were, but we were looking really at the 15 emotional content. 16 Q. That implies that you were discussing with him the cases 17 of particular families and the work you had been able to 18 do. What about your own performance, as it were: could 19 he supervise your function, your role as a counsellor, 20 as a support aid? 21 A. I do not really think that aspect of the role was 22 discussed until Julie Vass came into post, I think it 23 was around 1991, and I mean, I was certainly aware that 24 I was trying to "find my feet" with the post. What 25 I think I did was focus in on the needs of families, 0107 1 which I was beginning to understand and felt I was 2 making headway with, but I think probably what I was not 3 doing was looking at the whole wider area of how it 4 fitted in with the cardiac team and things like that. 5 That aspect probably was not looked at until I had 6 professional managerial input. 7 Q. Sticking still, though, to the counselling work rather 8 than the interrelationship with the rest of the team, 9 was there anyone who was capable of looking at your 10 performance as a counsellor and discussing with you the 11 areas in which your skills might need to be strengthened 12 or developed, or discussing critically the sorts of 13 initiatives you were taking and whether or not they 14 could be developed in new ways or should be strengthened 15 in the ways in which you were developing them? 16 A. What I did, because I think I was aware that there were 17 gaps, is I went to see Paul Burroughs, who was a child 18 psychotherapist, because I did discuss with Dr Joffe 19 right at the beginning supervision outside the role with 20 him, and talking to Paul Burroughs was quite helpful in 21 terms of how I felt I was dealing with things, but 22 again, I did not feel it was quite appropriate for this 23 post, because he was a very good child psychotherapist, 24 but that was really not what the main thrust of the job 25 was about. I did also see Madeleine Dunham who was or 0108 1 is the principal psychologist in the hospital, and she, 2 again, was very helpful. 3 So I think I was getting people to look at aspects 4 of my work, but whether either of those two people were 5 actually aware of how I was performing, other than what 6 I said, I do not know. 7 Q. When Julie Vass arrived in post, what difference did 8 that make? 9 A. My memory is that Julie, as obviously a professional 10 manager, was very aware of the structures within the 11 hospital and the way in which disciplines worked 12 together, for example, and she was very good at getting 13 me to look at, you know, the needs of my posts, the 14 needs of families, how I might strengthen certain areas, 15 what aspects of the job I wanted to develop, feedback 16 from nursing staff, for example, about how the post was 17 fitting in and how I was performing. So she had a much 18 wider view of things and that was very helpful. 19 Q. Did that meet the need or plug the gap you have 20 identified, or was it only a partial solution? 21 A. No, I think that things became a lot clearer once she 22 was in post. I think that was very helpful. 23 Q. What she did not have was any professional background in 24 the area in which you were working? 25 A. That is true. It is difficult for me to answer that, in 0109 1 a way. I think that what I would -- I mean, a lot of my 2 evaluation, I think, came from how I felt families were 3 receiving me and the sort of service I was giving. 4 Although I know that is perhaps not unbiased, but 5 I think I was trying to be very aware of that, and also 6 I did talk to nursing staff quite a lot and other people 7 in the hospital, so that I think I was trying to keep 8 some awareness of how I was performing in the 9 counselling role. 10 Q. If we look at page 122, that is a job description for 11 your role. It is dated, I think, 1991, if we look 12 towards the bottom of the page, and then turn over, 13 please, page 123. It is dated December 1991. So that 14 postdates the creation of the UBHT. It may be that that 15 job description was issued as part of the 16 reorganisations that followed on the creation of the 17 Trust; is that correct? 18 A. I believe so. That is Julie Crowley, as her name was 19 then, her signature is at the bottom. I know we did 20 discuss a new job description in the light of that. 21 Q. Did it have a predecessor, this job description? 22 A. I am sorry, do you mean my original? 23 Q. Did you have a formal written job description from the 24 beginning? 25 A. Yes. 0110 1 Q. And it was that job description that was amended in 2 December 1991; is that right? 3 A. I believe so, yes. 4 Q. If we turn, please, to page 113, there we have a set of 5 objectives for the coming year. If we scroll down -- we 6 have seen this once already -- it is signed by you in 7 October 1992. If we go back up, there is an earlier 8 date at the top. No, I am sorry. It is dated October 9 1992. 10 Again, was the process of your looking at your 11 job, the setting of objectives for the coming year, was 12 that a regular occurrence? 13 A. This was my original appraisal document. I think I have 14 two of them. I cannot remember how many times I had 15 a formal appraisal with Julie Vass/Julie Crowley. It 16 looks as if I may have only had two, but I certainly 17 remember regular contact, so I felt there was an ongoing 18 appraisal, but this would certainly have been a very 19 formal one, yes. 20 Q. We have discussed the formal lines of accountability to 21 Dr Joffe to Julie Vass or Crowley, and also of contact 22 with other professionals if you went to see them. 23 Were there any other forms of support that you had 24 in a role that might at times have been a stressful one? 25 A. It was a very stressful job, and I think I was aware 0111 1 right at the beginning that I was going to need help. 2 As I have already mentioned, that was part of my reason 3 for seeing Paul Burroughs and then Madeleine Dunham, but 4 a number of years after that, and I cannot date it, 5 a Support Group was set up in the hospital, in fact 6 there were two support groups. One was convened by 7 Charmian Mann, who was the Chaplain to the hospital. 8 That was helpful but it was not terribly structured. 9 About six years ago, a Support Group was set up by Ann 10 Dent, who has done a lot of work in bereavement 11 research, and that is ongoing. That has been 12 invaluable. 13 Q. Is that a Support Group for staff or a Support Group for 14 bereaved families, or both? 15 A. No, it was set up specifically for people like myself 16 with isolated jobs and in fact, most people, but not 17 everyone, is a member of the Trust. There is someone 18 who is also working outside. But it was convened 19 because Ann was very aware that there were quite 20 a number of people who were all working in isolation 21 with stressful jobs, and she sent some sort of notice 22 around to see if anybody wanted to join such a group. 23 It is specifically for staff and it is there as 24 a support. In fact, we do not always focus on work 25 issues. There are times when some of us may bring up 0112 1 other issues that we are finding difficult. 2 Q. If it is composed of isolated staff members, what sort 3 of people have come to find assistance? Not names, but 4 job descriptions. 5 A. Chaplains, specialist social workers, very senior 6 nursing staff in the maternity unit, another support 7 worker in another discipline. People doing -- Ann 8 herself who is doing research into bereavement, somebody 9 else doing some form of research. I think that more or 10 less covers it. 11 Q. If we turn to the witness statement of Mrs Pratten, 12 please, WIT 269/3 and look at paragraph 10, please, she 13 describes there the setting up of your post and she was 14 concerned that the new post did not fit into any 15 established structure and none was established for it, 16 or for you. 17 Do you think that that is an accurate comment from 18 your perception of how the post was supported? 19 A. I can understand what she is saying there. There were 20 difficulties about the post because -- I remember some 21 of the discussions that went on, that I did not fit into 22 social work and I did not fit into nursing and I did not 23 fit into psychology. There was some discussion pre my 24 being appointed because I think I talked to Dr Joffe 25 about it in general ideas, but also after I was 0113 1 appointed. From that point of view, it was isolated. 2 There was no peer system that I slotted into. I know 3 that there was a suggestion that I would fit into 4 psychiatry or psychology or social work, but none of 5 those, really, were quite right. Maybe that was the 6 nature of the job. But certainly, there was not that 7 peer support. 8 There were other aspects to the post that were 9 quite isolating. Because the nature of this, this was 10 a new post and it was a one-off post, so I do not know 11 whether that could have been different right at the 12 beginning. 13 Q. You are saying that, yes, it was isolated, but you 14 cannot, even now looking back on it, think of what might 15 have been the solution to that problem? 16 A. Everything is with hindsight. I think it is very 17 difficult to see at that time how it might have been 18 different, but one of the things that I was aware of was 19 that I do not know how much the post had been discussed 20 with all members of the cardiac team in terms of, you 21 know, both surgeons, consultants, nursing staff or 22 anybody else. 23 Had that been so, but possibly had there been more 24 of a cardiac team structure that met very regularly, 25 that looked at non-clinical issues, then possibly 0114 1 I might have slotted into the team as opposed to 2 a professional background. 3 I am not sure if that makes sense, what I have 4 just said. 5 Q. How did the cardiac unit function, then, if there was no 6 cardiac team that met regularly to discuss non-clinical 7 issues for you to slot into? 8 A. It was not particularly structured. I talked to 9 cardiologists about needs of parents, or I would seek 10 them out if there were particular concerns, and I sat in 11 outpatients so that was a chance to talk to them. But 12 what there was not, you know, was this, that I would 13 know every week, for example, that there would be 14 a general meeting which was not only a clinical 15 meeting. So I did have to seek out the time to talk to 16 the medical staff particularly, rather than it being 17 there. 18 Q. So there were regular clinical meetings at which 19 clinical matters were discussed, but not regular 20 meetings discussing matters other than clinical 21 priorities which would have been multidisciplinary? 22 A. That is right. 23 Q. What impression did you get about the level of 24 discussion about your post or the degree of consensus 25 about its function that had been established before you 0115 1 came into it? 2 A. I do not know. 3 Q. You said that if there had been more, which implied at 4 least that, at least on occasion, you might have been 5 aware of incidents which suggested that not everybody 6 had either been aware of or had thought through what 7 your role would be? 8 A. I do not think there was so much incidents, but 9 I remember that I did not have a formal opportunity to 10 meet, say, Mr Dhasmana, or, I believe, Mr Wisheart, 11 before I actually took up post. It was just by 12 coincidence that I was invited to the Heart Circle party 13 in December and I started in January, and I went and 14 introduced myself to Mr Dhasmana. In fact I did meet 15 Mr Wisheart because he was on the interviewing panel. 16 It was Mr Dhasmana that I had not met. I was very 17 pleased to have that opportunity, but I think I was 18 aware at the time that somehow it would be nice to have 19 met him, or I did not quite understand why I had not met 20 him, perhaps before I took up post. 21 So it was not so much incidents; I think there 22 just was a sense that possibly not everyone had got 23 together and discussed my role. 24 Q. Do you think that if that was the case, it made any 25 difference to your effectiveness in the role? 0116 1 A. My memory is that I had to be very proactive in seeing 2 where I was needed. By that I mean the cardiologists 3 and surgeons would not necessarily have brought me in at 4 the diagnostic stage. I did, I think, raise this with 5 Dr Joffe, because I said that I felt I needed to be 6 brought in perhaps at an earlier stage. When 7 I discussed that with Dr Jordan, they were very happy 8 for me to do that and to be there, but it did not happen 9 routinely, and somehow I felt I was always having to be 10 proactive. 11 Also, I remember talking to Dr Jordan one day 12 about how I might have more time to see him to talk 13 about families and we tried to make time during 14 outpatients, for example. Things like that which I felt 15 I had to work at. 16 Q. If we go back to the statement and to the second 17 sentence, the last sentence of paragraph 10, Mrs Pratten 18 comments that in addition there was no clinical 19 supervision provided for your post during the Heart 20 Circle's involvement with it. 21 If we assume that by "clinical" she means clinical 22 in the sense of having another professional with the 23 same skills as you, that would be accurate? 24 A. There was no other counsellor, family support worker in 25 the hospital, to my knowledge, no. But I would have 0117 1 described my role with Dr Joffe as having clinical 2 supervision. 3 Q. Because ... 4 A. We discussed the needs of families. That is how 5 I understood it. 6 Q. If we go on, then, please, to the role of Helen Stratton 7 and how your role changed, if at all, when she was 8 appointed: firstly, had you been consulted about Helen 9 Stratton's appointment, or about her post, the creation 10 of her post? 11 A. I was not consulted formerly. My memory is -- I have 12 tried to think about this quite a lot, because I think 13 it is very important. My memory was that I must have 14 seen either a draft document to do with the post that 15 was being set up, or a draft job description, because 16 I remember that -- first of all, I was surprised this 17 post was being set up, but also, counselling was 18 mentioned in this, I think it was a draft document, and 19 I asked to see Jean Pratten because I was concerned. 20 I felt quite confused and I did not quite understand 21 what was going on. I went to see Jean, she was very 22 clear that this post was going to be based on Ward 5. 23 The person appointed would have a nursing background, 24 and therefore the two posts would complement one 25 another, but we would be doing very different jobs, on 0118 1 different bases and with different professional 2 backgrounds. I was very satisfied with that. 3 Q. How much time did you spend in the Royal Infirmary, in 4 Ward 5, before Helen Stratton's appointment? 5 A. I spent a lot of time down there. I used to go down 6 approximately twice and occasionally it would even be 7 three times a day, so it was between one and three times 8 a day. I tried to be there when children went to 9 theatre for open-heart surgery in the morning and 10 I tried to be there when they came back in the evening, 11 and often that would be quite late. It is very likely 12 that I could not cover every family, but I certainly 13 gave a lot of input to Ward 5, whilst also being at the 14 Children's Hospital. 15 Q. So how much time do you think would have been freed up 16 if you were to have a role no longer at the BRI but only 17 at the BCH? 18 A. That is not a very easy one to answer, because even if 19 I had gone down there once or twice a day, I did not 20 always spend the same amount of time down there. I used 21 to go down in response to families' needs, so, for 22 example, it was very unlikely, but if there were no 23 families down there or very few families down there 24 having open-heart surgery, I would not have gone down, 25 but it would, I think, have been a considerable amount, 0119 1 probably a number of hours each day, I would imagine. 2 Q. If Helen Stratton or somebody fulfilling that post was 3 to take over your work, or to work at the Bristol Royal 4 Infirmary instead of you, did you not see that as 5 a diminution or a decrease in the importance of your 6 role? 7 A. No. I really did not. I was very aware that first of 8 all I felt being in two places, it was very far from 9 ideal. I was very aware that I could not work on Ward 5 10 in the way that I liked working with families in the 11 Children's Hospital, which was a mixture of quite 12 a formal approach with just saying, "This is my room, if 13 you want to come and knock on the door, you are 14 welcome". 15 I also felt that I did not have the background to 16 help families with the information and I felt that it 17 needed somebody down there, apart from the fact that 18 I was very busy and it was quite difficult trying to 19 meet the needs of families down on Ward 5 because of 20 open-heart surgery, which was a very, very stressful 21 time, and obviously bereavements as well, dealing with 22 the families at the BCH. I welcomed that post. 23 Q. You gave some comments on Helen Stratton's statement, 24 WIT 256/15; in which you mentioned that Helen Stratton 25 contacted you in July 1990, and there are various diary 0120 1 items referring to contact with her. 2 Did you discuss, then, the nature of the two roles 3 before Helen Stratton went to interview? 4 A. I cannot remember the details of our conversations. 5 I do remember that Helen Stratton contacted me. I did 6 not know her. She contacted me because she had either 7 seen the job advert, or I am not even sure it was not 8 before the job advert came out, and she wanted to talk 9 about my role and she wanted to know about the cardiac 10 services in the Children's Hospital generally and on 11 Ward 5. 12 I cannot remember whether we talked very 13 specifically about how the two posts would marry 14 together, but I do know that we met, I think, a few 15 times and we also talked about her actual interview and 16 the areas that she might be questioned on. 17 Q. What she said to the Inquiry was that when she took up 18 the post the role that she envisaged doing -- this is 19 page 37, line 5 onwards, for the note, of yesterday's 20 evidence -- was one of communication between the GP, the 21 health visitor and the parents, and also acting as an 22 information source for parents who were often travelling 23 from Devon and Cornwall to Bristol and making the 24 transition from the Children's Hospital where they had 25 the initial diagnosis and investigations to the Bristol 0121 1 Royal Infirmary smoother and more informed. That was 2 her understanding. She said essentially it was 3 an information-giving, communicating, co-ordinating 4 role. 5 Was that your understanding of her position as 6 well? 7 A. I was not so aware of the liaison aspect of her job. My 8 understanding of her post was that she was I thought an 9 experienced, qualified nurse; that she would be based 10 down on Ward 5; that she would be there to both support 11 the parents at the time when the child entered Ward 5, 12 just pre-operatively, and would be there to keep them 13 informed about the child's medical condition or could be 14 a contact with medical staff, nursing staff. 15 I was not particularly aware of the liaison role 16 with GPs and health visitors routinely. Had I been, 17 that would have been fine, but I think it was more the 18 aspect of being there for the families when the children 19 had open-heart surgery. 20 Q. So you understood her to be based at the Royal 21 Infirmary? 22 A. Yes. 23 Q. And you would be based at the Children's Hospital? 24 A. Yes. 25 Q. If you had that understanding, where did it come from? 0122 1 A. Certainly from Jean Pratten. Very, very clearly from 2 Jean Pratten. I cannot remember very clearly whether -- 3 I think I did discuss the post with Julie Vass, or with 4 the Manager -- I do not think Julie Vass was there at 5 the time. I have some idea of talking to the Manager, 6 because I remember saying to somebody, and I cannot 7 remember who that was, "Is it possible for me to help 8 with the job description or sit in on the interview?" 9 and I was told that was not either appropriate or 10 possible. 11 But, you know, there was no question in my mind 12 that there would be any difficulty about the post 13 marrying in. 14 Q. At what point did you realise that she envisaged that 15 her role should at least involve regular attendance at 16 the Children's Hospital, and that she wanted to have 17 a role in being with parents during the initial 18 discussions of diagnosis and surgical options? 19 A. My understanding is that I do not think this was ever 20 discussed formally. I actually went down to outpatients 21 one day and she was actually there, and I remembered 22 being very confused about why she was there and why she 23 had not said she was going to be there. There were 24 other instances that happened where I understood from 25 nursing staff that she had come up to the ward of the 0123 1 Children's Hospital to see families, or from the 2 Secretary's to look at notes. 3 Although we did have meetings, I tried to clarify 4 and to raise this issue, and somehow it just was not 5 possible to do that. It did not seem possible to have 6 a discussion as to, you know, why she had been in 7 outpatients and her involvement with the Children's 8 Hospital. 9 Q. Well, she was a nurse; she had the medical background, 10 training, that you lacked from that training. Would it 11 not have been helpful to have had someone whose role it 12 was to sit in on discussions with families, so as to be 13 able to provide further explanation or assistance with 14 the information that was given to them if families 15 wanted it? 16 A. Absolutely. I have actually mentioned in research and 17 other papers, it was not a problem. I actually felt 18 that a cardiac liaison nurse available to families was 19 a very good thing. I think that the difficulty was that 20 there was a gradual breaking down of communication 21 between Helen and myself at a point where it was not 22 possible to discuss how our two roles were merged. 23 I mean, I had no idea, in fact, until her statement came 24 out or I sat in on the Inquiry, that she saw that as 25 part of her role and that she was very unhappy about the 0124 1 way in which her role was perceived. 2 Somehow, it was not possible to sit down and say, 3 "Well, yes, that makes sense, that you sit in 4 outpatients, so maybe we sit together, or you refer 5 families to me". The communication was not there. 6 I found it increasingly very difficult and very 7 stressful. 8 Q. Was communication difficult in the breakdown between 9 yourself and Helen Stratton, or between yourself and 10 management or other figures with whom you might have 11 sorted this problem out? 12 A. No, I do not think there was any breakdown with 13 management. When I began to realise that there were 14 real difficulties in my communication relationship with 15 Helen Stratton and that I was very concerned this was 16 going to start impinging on families, I brought my 17 concerns to Dr Joffe and he certainly was very receptive 18 to these. I think we felt, together, I think I also -- 19 I do not know whether I would -- I think I only 20 discussed with Dr Joffe. I think it was felt that we 21 would have to clarify things in a meeting. I think 22 I probably would have discussed with Julie Vass as well. 23 Q. There has been evidence of an early meeting with 24 yourself, with Dr Joffe, with I think Mr Wisheart as 25 well, discussing this matter. Do you have any 0125 1 recollection of that? 2 A. I do recollect the meeting, yes. 3 Q. What was the outcome of it, in terms of who was to work 4 where and perform what role? 5 A. There was actually a document that I was sent by I think 6 it was Julie Vass, outlining the areas of discussion, 7 and if my memory serves me I think it was decided that, 8 because of unfortunately the lack of communication, we 9 would have to work in different hospitals: that she 10 would be based down at the BRI and that I would be in 11 the Children's Hospital, but that we would meet very 12 regularly so that we were discussing families, and if 13 either of us wanted to visit either hospital, we would 14 refer to the other. 15 Q. If we can look at page 110, please, this may be the 16 document you have been referring to. This is 17 WIT 192/110. 18 This is a letter written by Julie Crowley dated 19 January 1992, which is recapping on discussions and it 20 talks about the awareness of both teams having 21 difficulty, the fact that there has been difficulty in 22 achieving a smooth, free flow of communication and in 23 generally understanding each other's roles. 24 It goes on to discuss the demarcation between you 25 two. Broadly speaking, as you have said, it puts 0126 1 Helen Stratton into a role at the BRI and yourself at 2 the BCH with communication between the two of you. 3 If in fact it would have been sensible or helpful 4 to have had a cardiac liaison nurse attending 5 discussions with parents about diagnosis, about surgery, 6 at the BCH, why was this solution adopted? 7 A. I cannot recall exactly how that decision was made. 8 Obviously it would have been made between all of us. My 9 memory of that period was that the level of 10 non-communication from Helen to myself was really quite 11 extreme and there was also certainly in a sense for me, 12 that I was undervalued professionally and personally. 13 Q. By whom? 14 A. By Helen, and I can only imagine that that solution was 15 because we could not, sadly, work in a joint role 16 together, or actually be together at that period, which 17 is, you know, one that I have to say, I found extremely 18 difficult and, as I say, very stressful. I think it was 19 felt that in order that families would not in any way 20 hopefully be compromised, that we would have weekly 21 meetings and we would confer with one another and we 22 would still show families down to BRI together, which we 23 did on occasions. 24 Q. This document says that the weekly meetings -- we will 25 look over the page at page 111 -- should be maintained, 0127 1 which implies that you were still having weekly meetings 2 with her? 3 A. Yes, and my diary shows that. 4 Q. Even prior to this letter? 5 A. As far as I am aware, I would have to look at my diaries 6 for that. 7 Q. If you were having weekly meetings with her, why was the 8 breakdown of communication so extreme that you had to 9 confine each other to separate hospitals in order to 10 achieve a sensible demarcation of roles? 11 A. My memory says that during those meetings we probably 12 discussed families, but what it was not possible to 13 discuss was the greater issue of actually working 14 together. 15 I can only say that it was a gradual breakdown of 16 communication in the sense that Helen seemed to be doing 17 things, arranging meetings, without me being aware of 18 this, and certainly I was completely unaware of the fact 19 that she clearly, from what she was saying yesterday, 20 was under a lot of stress and very confused about and 21 felt very unsupported in the role. We did not look at 22 her role and my role at all. Somehow -- I do not want 23 to sound personal because it is maybe not the arena to 24 do that, but I just found her manner to me impossible. 25 I can only put it like that. 0128 1 Q. You have said that that letter records a joint solution, 2 or a solution that was a consensus on the part of those 3 involved at the meeting, but Helen Stratton's evidence 4 was that she felt she was being "put back in her box" as 5 a result of the solution recorded in this letter? 6 A. I cannot comment on that. I mean, I can only assume 7 that there was some consensus that came out of that 8 meeting. I mean, clearly there was not, from Helen's 9 point of view, but I do not know whether I would have 10 been aware of that at the time. 11 Q. If we turn back to the first page, page 110, at the very 12 bottom it says both of you have ample workload in your 13 respective areas. 14 "It has been agreed all round that these roles are 15 similar but extremely different, and because of this, 16 the need for good communication was essential." 17 What did you understand by the phrase "similar but 18 extremely different"? 19 A. Helen was a nurse, and I think an extremely experienced 20 nurse, and my background was obviously different. 21 I think there would have been an area in the middle 22 where we would both have had a role in supporting, 23 inverted commas, "counselling" families. Helen, 24 obviously her nursing background would have meant she 25 was there helping families with the medical nursing 0129 1 aspect. I was more on the emotional, psychological 2 side. But in the middle there would have been some 3 common area, for example, maybe perhaps 4 information-giving, perhaps an element of liaison with 5 the community, or preparation to go into the community. 6 And the support aspect. So although our jobs were very 7 different, inevitably, because we were dealing with 8 families, there must have been some common ground. 9 Q. If it had been the case that Helen Stratton had worked 10 more at the Children's Hospital and had undertaken 11 a more active role in being involved with parents from 12 the start in providing medical information, would that 13 not have given rise to difficult issues of transition 14 between two support workers, the hand-over of families 15 from one worker to another? 16 A. That is slightly hypothetical, if I may say so. 17 Q. Is it, because you have said you would welcome someone 18 to be more involved in that aspect of things? But take 19 a case of a family who have come into admission, you 20 have greeted them on admission, you have established an 21 initial relationship with them. Perhaps you have taken 22 them down to the catheter room; they have had 23 a catheterisation with your assistance, and then after 24 that, the stage at which they first meet the surgeon 25 arises because there has been a more accurate diagnosis. 0130 1 At that stage, it is perhaps thought for the first 2 time that Helen Stratton might be of assistance. 3 How do you manage the transition between the two 4 roles at that point and immediately afterwards? 5 A. I can only think of an example with other disciplines. 6 I have worked with the same family, with social -- 7 Q. Can you speak up a little more? 8 A. I am sorry. I can only speak for example with other 9 disciplines. I have worked jointly with the same family 10 with social work or with chaplains, or -- those are two 11 examples that come to mind at the moment. It has not 12 been a problem, because we are not necessarily doing the 13 same thing at the same time. 14 I think, had we been able to work together in 15 a different way, my guess would have been that families 16 probably would have used me sometimes, her sometimes, or 17 they may have had a preference because, after all, I am 18 not going to get on with every family and there are 19 going to be some that choose not to see me or not to 20 have seen Helen. I think we would have had to have sat 21 down together very carefully and thought about these 22 issues. 23 Q. Take another example. Take a family whose child has 24 been undergoing surgery and as a result Helen Stratton 25 has been involved, sitting with them in ITU, explaining 0131 1 the procedures that have just taken place and supporting 2 them through the aftermath of care within the ITU. That 3 may go on for quite a while, perhaps a few days, but 4 sadly, at the end of that, the child dies, and therefore 5 the issue of bereavement support and counselling comes 6 to the fore once more. It might be thought that would 7 be more naturally your role than Helen Stratton's. 8 On the other hand, the family has developed 9 a relationship with Helen Stratton over the past few 10 days. How would you have managed that situation? 11 A. I think the parents are the best judge of what they 12 want. I mean, I would have hoped, had that situation 13 existed, that nursing staff or doctors or whoever would 14 have said to the family, "Would you like Helen Vegoda or 15 Helen Stratton to be involved, or to be here?" and the 16 family themselves would have made that decision. 17 Q. Did you ever consider those sorts of issues at the time 18 when you became aware that Helen Stratton was working or 19 seeking to work within the BCH? 20 A. I did attempt to, but I got met with, I do not know, 21 a very defensive, unhelpful response. I just was not 22 able to take it any further. 23 Q. So as I understand it, you are saying these sorts of 24 issues were never discussed or teased out? 25 A. It was not possible to, no. 0132 1 Q. But Helen Stratton's evidence was that this is what she 2 wanted; she did want to be able to take up more of 3 a role at the BCH, but that her perception was that 4 whenever this was raised, you felt that she was in some 5 way encroaching or threatening on your role at the 6 Children's Hospital. 7 A. I think I said before that until I actually read her 8 statement and I heard her express herself yesterday, 9 I was not aware of some of her perceptions of what she 10 actually wanted in the job, nor was I aware of the 11 degree to which she was clearly very unhappy and felt 12 very unsupported. 13 I can only say that it is with great sadness, 14 because I feel that we were not able to communicate but 15 we could have been mutually supportive, had that been 16 the case, but her way of behaving with me was just very, 17 very undermining, and I could not deal with that. 18 Q. So is this an issue about a clash or a lack of empathy 19 between personalities, or does it say anything about the 20 way in which the two roles were structured from the 21 start? 22 A. I think it is both, probably. I think that there should 23 certainly have been more discussion before her post was 24 actually advertised. I think it would have been very 25 helpful had there been some sort of team meeting 0133 1 involving myself and managers and other people and maybe 2 Jean Pratten, to actually tease that out. I think 3 probably that was not a good foundation, but at the same 4 time -- this is where I was very confused -- Helen 5 actually sought me out and I believe that I really was 6 welcoming to her as an individual, but also to the post, 7 and I felt that we had begun to -- not discuss the 8 details, but certainly that there was awareness of what 9 I was going to do and what she might do if she got the 10 job and therefore there was that foundation, to take off 11 from there. It did not happen. 12 Q. She described yesterday her relationship with you as 13 being "professional but cool". Is that an accurate 14 statement from your point of view? 15 A. I find that an extremely difficult question, because at 16 times I do not believe her behaviour to me was 17 professional. I am not suggesting that her work with 18 the families was not, but her actual professional 19 relationship with me, her personal relationship with me, 20 was I think bordering on not being professional, and 21 I think was more than cold. 22 Q. That relates back, does it, to the issue of whether or 23 not your skills were being recognised or valued by 24 Helen Stratton? 25 A. I do not know what it was about. I have to be honest 0134 1 and say, I never understood her behaviour and her 2 professional relationship with me. I did not understand 3 why she could not communicate, why she was personally 4 really quite rude to me. I did not understand where 5 that was coming from. I still do not understand where 6 that is coming from. 7 Q. Did you take any steps then to raise that difficulty 8 with Julie Vass? 9 A. I talked to both Julie Vass and Dr Joffe. I was 10 actually very upset by what was going on and I was 11 concerned about it. 12 Q. And what was done in response to that talk? 13 A. Well, we had the meeting. 14 Q. That meeting took place in around January 1992, which 15 was a full year after Helen Stratton had been 16 appointed. How long had it taken for these difficulties 17 to emerge? 18 A. I am not absolutely sure. We met together fairly 19 regularly to start with, and I can only assume that the 20 first few months I think seemed okay. 21 Q. If I could help you, if we go back to the letter that we 22 have been looking at and the third paragraph, which you 23 can just see on the screen, there Miss Crowley talks 24 about having had previous talks which were aimed at 25 assisting both in defining your individual roles. 0135 1 A. Yes. 2 Q. Can you help us any further on those? 3 A. I cannot. I can only imagine that she means not joint 4 talks together. I think there was only one formal 5 meeting. There would have been other times when I would 6 have gone and talked to her and Dr Joffe. If I could 7 just come back to what you asked before, I think that 8 I was aware of a gradual breakdown and, for example, 9 just the fact that other people were saying to me that 10 Helen was coming to the Children's Hospital and I was 11 not aware of this, and did not understand why that was 12 not being communicated to me. It seemed a gradual 13 process that I did not really piece together until maybe 14 further on that year. I do not know. 15 Q. So do you think that the attitude that you had or saw 16 demonstrated by Miss Crowley, by others involved in this 17 review, was helpful or otherwise in sorting out this 18 particular matter? 19 A. My awareness was that I thought it was a workable 20 solution, yes. 21 Q. Just to pick up one further aspect of Helen Stratton's 22 evidence, she was asked yesterday, at page 94 line 18, 23 whether the difficulties between herself and yourself 24 related solely to this issue of the BRI/BCH interchange, 25 or whether she perceived a more general difficulty 0136 1 between yourself and Ward 5. She said: 2 "I cannot speak for the nurses on Ward 5, but they 3 had some, I think, concerns about Helen Vegoda's 4 involvement with the parents and children, in as much as 5 they did not believe that she had the appropriate 6 nursing background to deal with some of the issues that 7 the parents would be asking. So whilst I understand she 8 was always made welcome at the Royal Infirmary, I think 9 the nurses did sometimes feel and perhaps part of the 10 evolvement of the job I did, was that they would have 11 welcomed someone who could talk to the parents about 12 different aspects of the intensive care unit and they 13 could have had more of a rapport than with someone who 14 did not come from a clinical background." 15 Were you aware of this sort of reaction on the 16 part of any of the nurses on Ward 5? 17 A. Certainly not collectively, no. I mean, I certainly got 18 to know some of the nurses down on Ward 5, and talked to 19 them, but I was very aware that I would not -- I did not 20 talk to them about the child's medical condition. 21 I am sure I was particularly aware of that. I was 22 certainly aware myself that I could not be there for the 23 families in that capacity, but I do not know that I was 24 particularly aware of nursing staff. 25 Q. But the implication is that they were at least less than 0137 1 100 per cent supportive of your involvement because they 2 felt its limitations in that you did not have a nursing 3 background in your role. 4 Did you ever pick up any such perceptions from any 5 nursing staff on Ward 5? 6 A. What I do remember -- and this was before Helen Stratton 7 came -- was that one of the difficulties of the split 8 site and the fact that I was going down to Ward 5 was 9 that I did not really get to know the nurses well. We 10 did not sit together and have time to discuss the role. 11 I went down there to see families and sort of came out 12 again. That was not my base. So I do not think 13 I necessarily developed a sort of close rapport with the 14 nursing staff, but that was the main reason, and also 15 the fact that there were a lot of nursing staff and, you 16 know, they were continually changing. 17 MISS GREY: Sir, we have been hearing evidence for an hour 18 and 20 minutes. I wonder if that might be a convenient 19 moment to break for, say, a quarter of an hour? 20 THE CHAIRMAN: Yes, shall we do that, then, and reconvene 21 about around 25 to 3? Thank you. 22 (2.25 pm) 23 (A short break) 24 (2.45 pm) 25 MISS GREY: If we could turn back to your role as the family 0138 1 counsellor at the BCH -- let us talk first about the 2 period before Helen Stratton came into office. You were 3 dealing with large numbers of families coming in every 4 week. Were you able to provide them all with the 5 support, help, assistance, that you felt they needed? 6 A. I tried my best, but inevitably, there were going to be 7 some families that I did not manage to see. For 8 example, when families came in for catheterisation, they 9 were often only there for maybe one or two nights, so it 10 is possible there are some families I just did not 11 manage to see. 12 Q. There was one of you. Was it enough? 13 A. No, because it would have been very helpful right at the 14 beginning had there been somebody covering Ward 5. 15 I think the split site was very difficult. 16 Q. So when Helen Stratton took up her role at Ward 5, was 17 that enough? Were two of you adequate to cover this 18 ward? 19 A. I would have thought so, yes. I mean, from my 20 perspective, I can only say it certainly made it easier 21 that I could concentrate on the families at the 22 Children's Hospital. 23 Q. If we look at some of the research which you did, you 24 conducted a survey in 1993. This is page 65 of your 25 witness statement. It starts at page 65: a study 0139 1 looking into the level of information and support given 2 to families, attending specifically for catheterisation, 3 I think this research was? 4 A. Yes. 5 Q. You analysed using material gained in interview and 6 questionnaires, the presence or lack of parental support 7 and information and the general experience families had 8 had attending the BCH for catheterisation? 9 A. Yes. 10 Q. If we look at page 69 of this document, we can see from 11 the first page that the work that you did now took place 12 in the first half of 1993? 13 A. Yes. 14 Q. So that was obviously after Helen Stratton had taken up 15 her post, and she was still in post during the time of 16 this work? 17 A. Yes. She would have been. 18 Q. If we turn over the page to page 72, the findings are 19 set out there. It says that "support at the time of 20 initial diagnosis...". At the time of initial 21 diagnosis, 45 per cent did get support from the hospital 22 source; 53 per cent did not, and of the 32 who did not 23 get support, 25 per cent said they would have liked it. 24 You go on to break down the source of support. 25 The majority of those who got it in hospital at that 0140 1 stage were receiving it from you; is that right? 2 A. Well, obviously that is what it says here, yes. 3 Q. Then if we go on to support to parents at notification 4 of catheterisation: 62 per cent did not turn to their 5 families and friends, and again, we see that there was 6 still a fair number of parents, 16 parents, who did not 7 use the hospital as a source of support at the time, and 8 8 expressed disappointment at not being aware that they 9 could have done so. 10 Then a number of parents were remarking on the 11 absence of written information. 12 I am trying to summarise this very full document 13 briefly, but is it fair to say that it paints a picture 14 of parents who were still not accessing or were not 15 aware of the support that you could give them within the 16 BCH? 17 A. Clearly it must do, and I can only surmise, looking back 18 at this stage, that that could have been for a number of 19 reasons. It could be that there were some families who 20 had not been to Bristol before and either were not aware 21 that I existed or possibly were sent a leaflet and did 22 not take particular note of it. There may have been 23 other reasons, but, yes, clearly there were families who 24 were not aware. 25 Q. If we turn to page 78 of your study, the recommendations 0141 1 start at the bottom of the page and you talk about the 2 need for a key hospital liaison professional to meet the 3 needs of families with disabilities. You identify the 4 absence of respite care and baby-sitting facilities, but 5 if we turn over the page, we can see that you also made 6 recommendations about information that was needed, and 7 looking about halfway down the page, you speak there 8 about more awareness by professions and families of the 9 counsellor post at the BCH and its availability to all, 10 and you say that it may need to be more widely 11 advertised, and you go on to talk also about further 12 promotion of voluntary organisations and a wider 13 distribution of information already existing for parents 14 and professions on admission, and so on. 15 How well advertised do you think, having conducted 16 that research, your post had been? 17 A. I have to say that most of the impetus would have been 18 left to me. I had to be very proactive about finding 19 ways in which health professionals or parents or 20 voluntary organisations knew about my existence, and 21 I do certainly remember feeling slightly overwhelmed by 22 the fact that the South West was a very large area, so 23 I think what I was very aware of -- and I tried to deal 24 with this in various ways -- was to make sure that 25 people knew of my post through leaflets and various 0142 1 other ways I can talk about perhaps in a minute. But 2 I was very aware that there was not necessarily 3 a consistent structure by which I could make sure that 4 all GPs or all health visitors, for example, knew that 5 my post existed. That actually felt rather 6 overwhelming, outside my grasp. 7 Q. If a number of parents still were calling on you and 8 afterwards, when contacted in the survey, felt 9 disappointment that they had not known about it, is that 10 because there was not enough information available about 11 your role, or is it because there was not enough time 12 for you to fill the gap by contacting parents? 13 A. When you say "contacting parents", do you mean before 14 they came into the hospital? Or actually while they 15 were in the hospital? 16 Q. Primarily while they were in the hospital. 17 A. It is difficult to answer. I know that I made a very 18 particular point of trying to meet as many of the 19 catheter families as I could -- hence the reason for the 20 research. I have always felt that was a very stressful 21 area. But inevitably, there were going to be a number 22 that I did not meet. That was bound to have happened. 23 As far as parents knowing about my post before 24 they came, I think there was a section of them that 25 possibly did not look at the leaflets that came through, 0143 1 because we know from experience that parents do not 2 always read absolutely everything that comes through at 3 the time of an appointment, so there might have been 4 a section that did not. 5 Then there would have been a number, you know, 6 GPs, health visitors, who would not have been aware. 7 Q. But if there were a number of parents who did not see 8 you, whom you inevitably missed say on the ward rounds, 9 who did not read leaflets and the health visitors were 10 not aware, how did you ensure, in your job, that those 11 who most needed your help did receive it? 12 A. I think I would like to make a distinction, actually, 13 between the families that came in for a length of time, 14 the ones that came in, for example, for planned 15 operations, or came in as emergencies and then were in 16 the hospital quite a long time. Those families I would 17 sincerely hope that I did meet and that I was able to 18 prioritise my time. But there was a large turnover of 19 families, for example, who came in for catheterisation, 20 who were really only in for sometimes a day. 21 In fact, what I did to address those families or 22 the health professionals that did not know about my 23 post, was in a number of ways. Partly by organising 24 study days for health professionals, over I think about 25 three or four years, partly for the reason of promoting 0144 1 what was available in Bristol, not just for myself, but 2 generally for cardiac families, and also by producing, 3 for example, three booklets for families. 4 So I think I was certainly aware that there were 5 going to be some gaps, but I think I tried to address 6 those in the only way that I could, to do something 7 practical. 8 Q. You mention in this work the need for a wider 9 distribution and availability of information already 10 existing for parents and professionals in the form of 11 books, leaflets and videos, and you suggest that for 12 instance a pack might have to be produced. 13 What was done as a result of this research? 14 A. Do you mean from myself, or anybody else? 15 Q. Within the BCH, the organisation with which you were 16 working. 17 A. If I am honest, not a lot. I did distribute the paper 18 to the cardiologists and the surgeons, I believe. 19 I cannot remember who else. I have to say, I think 20 I was quite disappointed that I actually did not get 21 a lot of feedback or discussion from it. 22 Q. In general, did you find that when you were working and 23 you made suggestions for improvements on information, 24 for instance to parents or other professionals, you got 25 a response to that, or not? 0145 1 A. Yes. For example, I helped to produce these three 2 booklets and Dr Joffe was one of the people that helped 3 to produce them, and other people as well, dieticians 4 and others. And I got a lot of support for that sort of 5 initiative. I got a huge amount of support for 6 organising the study days from the whole team. I mean, 7 both surgeons and the cardiologists and others involved 8 with cardiac children were very, very supportive and 9 gave their time, and they were very successful. 10 So I feel that when I came up with an idea or 11 initiative, it was supported. 12 Q. So what would your overall assessment be of the adequacy 13 of the information that was given in written form to 14 parents either before they came into the hospital or on 15 admission? 16 A. Can I split this down into areas? I believe that once 17 the booklets were produced, the parents had a lot of 18 information coming in for catheterisation, because we 19 sent this to every single parent. 20 Q. When was that produced? 21 A. I believe it was something like 1993, but I am sorry, 22 without referring, I cannot remember. 23 Q. So from that point, parents had adequate information on 24 catheterisation? 25 A. I believe so, and I know that booklet was appreciated. 0146 1 I think I tried to respond with a general leaflet to 2 them knowing about my post, but I do not know how 3 adequate that was. That was sent out by the hospital. 4 One of the suggestions I know I did make was that 5 possibly sessions could be taped with the cardiologists 6 when they discussed, for example, a diagnosis or 7 information. I had actually read about that somewhere. 8 That was a recommendation that I made, but nothing 9 really happened about that. 10 I felt that it would have been nice to have had 11 a more streamlined approach to information. This is why 12 I felt a pack would have filled that gap. 13 Q. In general, were you ever in the position of suggesting 14 changes in practises of handling parents or information 15 for parents? 16 A. I did discuss, and I think I mentioned this earlier, 17 being more involved at an earlier stage. I did discuss 18 that with cardiologists. It was taken up to an extent, 19 but it was rather piecemeal; that is the way I can put 20 it. 21 Q. What do you mean by being involved at an earlier stage? 22 A. That if it was possible to be involved when the 23 cardiologists were, for example, talking to parents who 24 had just come in, so I could be introduced at that 25 stage, but as I say, that did not really happen in 0147 1 a streamlined way. 2 Q. In general, what do you think the dynamics of your 3 relationship between the medical staff and yourself 4 were? 5 A. I think I got on quite well with the cardiologist and 6 the surgeons on an individual level, and they were very 7 receptive if I talked to them about particular problems 8 with a family or families' concerns or the fact that 9 families were confused or wanted to see them. They were 10 very receptive to that. 11 What there was not -- I mentioned this earlier -- 12 there was not a set forum in which we could discuss the 13 wider needs. 14 Q. Helen Stratton yesterday described at the BRI an 15 environment or culture in which the surgeons were 16 predominant and there was a fairly strict hierarchy of 17 control leading downwards from them -- I paraphrase, but 18 that, I think, was the gist. 19 How do you think that compared, if we assume that 20 picture to be accurate -- with the situation you 21 observed at the BCH? 22 A. Our perspectives were different in that I was not aware 23 of the relationship, the sort of line of hierarchy, as 24 it were, in terms of the child's treatment, because that 25 was not my background, as it were. I certainly found 0148 1 that nursing staff, particularly on intensive care in 2 the Children's Hospital, were very aware of needs of 3 parents or issues that parents might be raising in terms 4 of a child's treatment, and I did not sense that they 5 could not go to the cardiologist or the surgeon to 6 discuss this. 7 Q. The example of taking foot prints and photographs, foot 8 and hand prints of children after a death and 9 photographs was raised yesterday. Was this something 10 that was a practice at the Children's Hospital when you 11 were there? 12 A. Yes, it was. In fact, I have to say that my -- my 13 memory may be faulty, but I thought that was a practice 14 at Ward 5 as well, that photographs were taken and hand 15 and foot prints earlier on, but certainly, nursing staff 16 and myself, I think, were very aware of those sort of 17 areas. 18 Q. Was that a practice when you first arrived? 19 A. Yes, I think so. 20 Q. If we turn back to your witness statement, page 3, 21 WIT 192/3, paragraph 6, you talk about sitting in with 22 cardiologists and surgeons on occasions. 23 Can I just ask you, how would you decide which 24 occasions it would be appropriate to sit in on? 25 A. What I did was, I made a point of going down to the 0149 1 outpatients clinics at the BCH, and I think they were on 2 Wednesdays. That would be when the pre-operative 3 discussion took place with the parents. 4 The nursing staff knew that I went down, and what 5 would happen was that either I met there parents whom 6 I had met previously, who I knew were going to be there, 7 and they knew, and I knew that they were going to talk 8 to the surgeons, so that I might have prearranged to 9 accompany them, if that is what they wanted. So that 10 was one set of parents. 11 Others, the nursing staff might have involved me 12 and actually said to me, "There is a family in this 13 afternoon who are going to be talking to one of the 14 surgeons; it is quite a complex operation, I am just 15 telling you that". If I did not know that family, 16 I might go and introduce myself and offer to be around. 17 But it was the parents' choice. If they did not wish me 18 to be there, and obviously I cleared this with the 19 surgeons and the cardiologists, then I would not sit in. 20 Q. You talk in a little bit more detail at page 9 of your 21 statement about these discussions with the parents. You 22 speak about whether or not they understood or asked for 23 clarification of the word "risk". 24 How many parents do you think did understand what 25 the word "risk" meant? 0150 1 A. I would have said a very high percentage did. 2 Q. In general, what was your experience of the level of 3 understanding displayed by parents after discussions 4 with either the cardiologists or the surgeons about 5 their child's condition? 6 A. I cannot judge whether they understood all the details 7 that were gone into. For example, the surgeons used to 8 draw a diagram and talk in great detail about the 9 operation. I did not go into detail with the parents 10 about how much they understood, but I did try and 11 ascertain the degree to which they understood the actual 12 severity of the operation. I felt that, to my 13 knowledge, most parents did seem to have an 14 understanding of whether there was a very high risk 15 operation or this was not a high risk operation, but 16 I am also quite sure, I am afraid, there would have been 17 some parents who possibly did get confused and maybe did 18 not fully understand. 19 Q. Was it those parents whom you then responded to by 20 trying to arrange further meetings? 21 A. If I was aware that families clearly were confused or 22 wanted to go over the detail, then most certainly, yes. 23 Q. In all your talks with parents after such discussions 24 with medical staff, would you perhaps agree that it 25 might not be unusual for a large number of parents, 0151 1 perhaps the majority, not to understand the full details 2 or the details of what was happening to their child, the 3 implications of what the diagnoses were and the 4 implications of the course of treatment that was being 5 suggested? 6 A. I am sorry, I probably cut off at that point; would you 7 mind repeating the question? I am sorry. 8 Q. Perhaps I should phrase it differently. In all your 9 discussions with parents over the years, what 10 understanding did you gain, what perception do you have, 11 of the level of understanding that most had of their 12 child's condition and the treatment that was being 13 proposed? 14 A. I think most parents would have understood the level, as 15 I say, of severity. I think the majority would have 16 understood if the surgeons said, "This is an operation 17 where we expect, for example, 8 or 9 out of 10 children 18 to come through", that they would have understood that 19 meant that their child was likely to come through and 20 this was a fairly low risk operation. 21 At the other end of the scale, I think they would 22 have understood where the surgeons made it very clear 23 that this was a very high risk operation and the risks 24 were high. 25 Q. What was the point of recommending, for instance, as you 0152 1 did in 1995, that a tape of the conversation between 2 parents and the cardiologist might be made available to 3 parents? What further information did you want them to 4 capture? 5 A. That was based on two things, really. When I was doing 6 my research, I read a lot of different papers written by 7 other people and quite a number of these papers referred 8 to the fact that parents only took in a certain amount 9 of information, particularly at the time of diagnosis. 10 I think I was actually referring particularly to the 11 cardiologist talking to parents at the time of diagnosis 12 when I referred to taping. For example, if it was 13 a newly diagnosed child, apparently, according to these 14 papers, parents would hear the word "heart condition" 15 and often just did not hear the details of what that 16 meant. 17 Certainly, my own experience was that at that 18 time, if it was complex, they really did not take in all 19 the details. It was not my idea; I had read that an 20 experiment had been done where a cardiologist had agreed 21 to have himself taped and the parents had found that 22 helpful. 23 Q. Perhaps just for the sake of completeness, we should 24 show you the comment that has come in from Mr Wisheart 25 to this part of your statement. It is to be found at 0153 1 WIT 192/241. 2 He comments on your recollection that you cannot 3 recall either surgeon routinely mentioning morbidity or 4 neurological deficit. I think you have had an 5 opportunity to look through these comments by 6 Mr Wisheart; is that right? 7 A. Yes, very briefly. 8 Q. Is there anything that you that you feel you need to add 9 to that, or would you disagree or agree with what he has 10 to say there? 11 A. What I meant in my statement was that my recollection 12 was that he did not routinely, every time, talk about 13 whether there might be complication or whether there 14 might be brain damage or something like that, but he did 15 on occasions do that. 16 I was thinking about it afterwards and I know 17 that, for example, both surgeons were always very clear 18 with, say, coarctation, that there might be 19 a complication with paralysis of the lower limbs, and 20 I remember that because parents were often extremely 21 upset when that was said. 22 So I would not want to change what I have actually 23 said in my statement. I do not remember routinely, but 24 certainly something like that, with that operation. 25 Q. So certainly you are re-emphasising the meaning of the 0154 1 word "routinely" in your statement? 2 A. Yes. 3 Q. And not, I think, disputing the further amplification 4 provided by Mr Wisheart; is that correct? 5 A. Yes, it is correct, yes. 6 Q. If we can just turn briefly to the Bereavement Support 7 Group that you discussed as part and parcel of your 8 evidence, I think it is right that one was set up in 9 around 1992 as a means of bringing parents together who 10 had suffered similar losses; is that right? 11 A. What had happened was that Charmian Mann, the then 12 Chaplain to the hospital, and myself, who worked quite 13 closely together, were very aware that there possibly 14 was a need to offer that type of support. We were both 15 offering individual support and support in other ways to 16 bereaved parents, but what was not available from the 17 point of view of the hospital was some sort of group, 18 and we both felt that parents might benefit from being 19 able to talk to other bereaved cardiac families. 20 So what we arranged was to offer, I think it was 21 something like 6 or 8 sessions, I think it was once 22 a week -- it was either once a week or once a month, 23 I am sorry I cannot remember -- either in Charmian's 24 house or in a hall that we used. 25 Q. Why did that group come to a close? 0155 1 A. There were something like six sessions and then we 2 reviewed it, then we had another six sessions a time 3 later. 4 We held these meetings in the evening and we did 5 not actually feel they were terribly well supported. 6 I cannot remember how many families came to them. 7 A number of families said they would like to but they 8 could not because of the distance, so in the end, we 9 actually felt that they were not particularly well 10 supported. 11 Q. Were families involved in your counselling in other ways 12 and in particular, did you ever encourage or participate 13 in peer counselling in appropriate situations by 14 introducing parents to each other? 15 A. Yes, I did. I had a lot of contact with bereaved 16 parents after a child had died. This was by way of 17 either individual contact with me if they lived locally 18 or they wanted to come and see me, but I always offered 19 to -- not always; I tried to offer to put parents in 20 touch with other parents, if that is what they felt they 21 needed. But at the same time, I also gave them 22 information about voluntary organisations in their area. 23 Q. Do you think, then, that the bereavement services which 24 you were involved in from 1988 to 1995 at the Children's 25 Hospital were cohesive? 0156 1 A. Given the fact that for part of that time there was only 2 one of me, I actually do feel that there was a fairly 3 comprehensive service to parents. I mean, what I had 4 personally to offer was my own support and counselling 5 at the very time that a child died, if that is what the 6 the parents wanted, and that took various forms. 7 I maintained contact with parents by way of cards and 8 phone calls, and I was available if they wanted to see 9 me or they wanted me to arrange meetings with anybody 10 else. I organised services, remembrance services, for 11 about three or four years and I tried to give them 12 information, as I say, about other resources, books and 13 such like, and we tried to organise these groups. 14 So I do not think there was anything else I could 15 have done. I mean, I am hoping that the service was 16 adequate, but, you know, I did what I could. 17 Q. What about, not necessarily your role, but you were 18 involved in liaising with other people and there are 19 issues about how your role would lock onto the role, for 20 instance, of Mr Milkins in organising aspects of the 21 administrative, practical aspects of a death and on the 22 other side, in handing parents over to community 23 services or organising assistance for them within the 24 community after a death at the BCH. 25 If we take the first one first, were services 0157 1 within the hospital coherent? 2 A. Yes, I think they were. I did not personally contact 3 Graham Milkins. That would normally have been the 4 nursing staff and the nursing staff were very much the 5 key people dealing with the family. I came in if the 6 family wanted me to, but I would not have been the 7 person that got in touch with others. 8 When it came to the family going back into the 9 community, normally routinely I would not have been the 10 person to contact GPs and health visitors. That would 11 have been done usually I believe by the nursing staff, 12 or possibly by medical staff. But having said that, 13 I did contact GPs and health visitors where I had 14 particular concern for a family and I felt that they 15 either were not going to cope well, or they were 16 unsupported or they were just needing more support. 17 Q. How did you decide the point at which your role should 18 cease and community services, if they existed, should 19 take it over? 20 A. I think I mentioned before, to an extent the families 21 made that decision. There were some families whom 22 I would always actually try and ask a family when they 23 left a hospital, "Would you like me to continue being 24 involved? Would you object if I phoned you?" for 25 example. If I phoned the family a few days or whatever 0158 1 it was after the death and I then said, you know, "Is it 2 okay if I go on telephoning?" if I got a negative 3 response, if the family did not seem to want that 4 contact, then I ceased that contact, in which case the 5 only contact I probably would have had would be to send 6 out cards and invite them to the services. But there 7 were quite a number of families where I was continuing 8 a very active bereavement counselling role over a number 9 of years, but there might have been other people 10 involved, so there would not necessarily have been 11 a cut-off point. My contact with bereaved families was 12 entirely open-ended. 13 Q. We heard a discussion on Monday of whether or not the 14 UBHT might develop, or whether it would be appropriate 15 for a hospital to develop a bereavement service based in 16 the hospital. There are obviously different views upon 17 such a service. Do you have views upon whether or not 18 ongoing commitment from the hospital is appropriate? 19 A. Quite a few years ago I went to visit Alder Hey 20 Hospital, because as I have said, I have always had 21 a particular interest in improvement -- I am not just 22 saying it because you [Mrs Mandelson] are sitting 23 there! I had read about the work that Alder Hey was 24 doing. I was actually very impressed by that sort of 25 model, that this was a centre in a hospital that was 0159 1 a resource. I feel quite strongly that if that sort of 2 resource could be available, not necessarily in BCH but 3 at a hospital in Bristol, as a regional resource, I feel 4 that that will be enormously supportive and educative, 5 not only for families, but for health, education, 6 professionals. 7 Q. The objection that was put to it was that there was an 8 issue about the point at which families needed to let go 9 and that to offer an open-ended commitment for say up to 10 five years might not be appropriate. 11 A. I would like to make a distinction between first of all 12 the -- I do not think that the resource should 13 necessarily be in the hospital where the child was. 14 I am thinking really of a regional centre. But again, 15 I do not really see it like that. I think we have to be 16 guided by families and I believe that there are some 17 families who get an enormous amount of comfort and 18 support from coming back to the place where their child 19 was, maybe still seeing some staff, being able to talk 20 about their child. There are other families who the 21 last thing they ever want to do is to come back into 22 that same place. 23 So there is the issue of the actual hospital in 24 which that child died, but what I had in mind 25 particularly -- can I just add that I think personally 0160 1 that we are not the judges of those. I am not 2 a bereaved parent. If any parent wishes to come back to 3 BCH, then I think we should facilitate that, within 4 reason, if we have the resources. But I really have in 5 mind more that there would be a base where bereaved 6 parents can go and possibly get individual or group 7 support, but maybe some sort of resource for videos and 8 for books, and that would apply to health professionals 9 as well. 10 Q. You have been talking of your involvement with bereaved 11 parents. You mentioned one specific aspect of it in 12 your statement at the bottom of page 7, where you start 13 to talk about the issue of tissue retention. The issue 14 is set out at the bottom of page 7. You go on to make 15 your substantive comment at paragraph 19, page 8. 16 You discuss there the fact that you say that staff 17 always handled this matter with sensitivity and in 18 a proper manner and that the full information was given 19 so far as you are aware. Then you go on to say that in 20 the case of a Coroner's postmortem, the parents were 21 being told why their permission was not being sought. 22 Can you recollect any incidents and discussions of 23 non-Coroner's postmortems, hospital autopsies? 24 A. Yes. Not specific instances, but I think there were 25 instances where I sat in and a postmortem was mentioned. 0161 1 Q. Can you remember in those cases what parents were being 2 told about their rights to consent or not consent to 3 such an investigation? 4 A. My memory is that they were told, I think with 5 sensitivity -- not told, they were asked whether they 6 would agree to a postmortem and if it was not 7 a Coroner's, that this was their decision, that they did 8 not have to agree to that, but that it might be helpful 9 to them, to give some additional information, possibly 10 about why the death occurred. 11 My memory was that it was tackled sensitively and 12 that doctors did say something to the effect of, "I can 13 appreciate that this is distressing for you", something 14 like that. 15 Q. Who would be likely to be involved in such a discussion? 16 A. I think it probably would have been the surgeons. I am 17 trying to think whether -- it might have been 18 cardiologists, but I believe it was surgeons. 19 Q. Would the patient administration officer, someone like 20 Diane Kennington, ever be involved? She was based at 21 the BRI; but such a person? 22 A. I knew Diane Kennington quite well, but I do not recall 23 any time when I was there and she was there with 24 families. I do not remember that. 25 Q. Just generally: you are saying "I think", "I recall". 0162 1 How good is your recollection of this aspect of matters? 2 A. I could not give you names of families, for example, but 3 I am certainly aware that there would have been times 4 when I sat in; probably quite a few times. 5 Q. Do you think then, looking back, that families were 6 aware of the fact that if they chose to, they could 7 refuse a hospital autopsy and take their child back 8 home? 9 A. Yes. I am fairly certain that the way that the surgeons 10 discussed this issue, there was always a difference when 11 the postmortem had to be carried out as opposed to not 12 having to be carried out, and I believe that both 13 surgeons did explain that it was not their decision; 14 that it was a legal requirement and why that was. 15 Q. You say in the last line you do not recollect being 16 present when the specific issue of consent to tissue 17 retention was raised and cannot comment on the manner in 18 which this was discussed. 19 Can you help as to the number of discussions you 20 might have been involved in on postmortems? 21 A. No, I cannot easily answer that. 22 Q. Are we talking a handful, tens, hundreds? 23 A. Certainly not hundreds, no. I am sorry, I do not think 24 I can really answer that because there were a number of 25 times when I was around when surgeons spoke to parents 0163 1 after a child had died and I remember, you know, them 2 discussing the postmortem, but whether the question of 3 tissue retention took place at the same time and I did 4 not remember it or whether it happened at another time, 5 I do not know. I just have a memory that I was not 6 aware of that issue being raised. 7 Q. Can you recollect the discussion or information that was 8 given to parents about what physically would happen to 9 their child during a postmortem? 10 A. No, I cannot. No. 11 Q. So you do not recollect any discussion of the specific 12 issue of consent or tissue retention or the retention of 13 organs in these discussions with surgeons? 14 A. No, I cannot. I am afraid I cannot remember. 15 Q. You are unable to help the Inquiry whether other 16 discussions might have taken place? 17 A. I am sorry, but I cannot remember. 18 Q. If we take Jean Pratten's statement once more, 19 WIT 269/10, if we scroll down a little, please, to the 20 split site. She talks there about the split site being 21 extremely hard for parents to cope with. 22 What was your judgment as to the importance or 23 otherwise of the split site? 24 A. I agree with Jean Pratten. I think the split site was 25 really quite difficult for parents to cope with, for 0164 1 a number of reasons. Primarily, that they had got used 2 to the Children's Hospital and they then went to 3 a strange building, a strange hospital, and one that was 4 not dedicated to children. So it was not ideal. 5 Q. Did parents ever make any comments on different quality 6 of care at the two sites? 7 A. I do remember parents commenting on the fact, and being, 8 I think, aware, that this was not a paediatric 9 environment. For example, I think some parents 10 commented on the fact that the nursing staff were not 11 particularly aware of feeding difficulties of, say, 12 young children post-operatively. I cannot remember 13 anything specific at the moment, but just a general 14 awareness that this is not a paediatric setting. 15 What particularly was commented on, and for some 16 parents it was very stressful, was the first time they 17 were shown around intensive care in Ward 5. They found 18 that extremely difficult because it was a mixed unit 19 with adults in it. 20 Q. What about the nurses at the Children's Hospital? Did 21 they make any comments about the environment at the 22 Royal Infirmary, or comment on any differences? 23 A. I did hear general comments about the fact that there 24 were not paediatric nurses down on Ward 5. 25 Q. Was it suggested that this made any difference in any 0165 1 way? 2 A. I cannot comment in terms of a purely medical nature, 3 but I did hear comments such as, I do not know, sort of 4 general washing of children or the general sort of care 5 of children, things like that. But not specifically 6 about the treatment, no. 7 Q. If we turn back to your statement momentarily, 8 WIT 192/10, you talk there about issue N, the expression 9 of concerns about paediatric cardiac surgery. In answer 10 to whether or not there were any concerns expressed, you 11 talk about a split site and whether or not that was 12 ideal. 13 Did you ever hear discussion of other concerns 14 about paediatric cardiac surgery, and in particular, 15 that the service being offered might not be of an 16 acceptable quality? 17 A. I heard very general comments from nurses, particularly 18 I remember the baby unit, because quite a number of 19 children went from Ward 5 up to the baby unit, and 20 I think also Ward 33, which was the surgical ward. 21 There were general comments about the children, 22 for example, when they left the baby unit, "We do hope 23 we see them again". So the fact that there was an 24 awareness that children who went down for open-heart 25 surgery might die. But I took that as being very 0166 1 general comments. 2 Q. If they were concerned that children might not come back 3 from surgery, what did you think that they thought was 4 the reason for that? 5 A. My understanding was that these were often extremely 6 sick children with very complex heart conditions, and 7 therefore there was a high risk and therefore they might 8 not make surgery. 9 Q. The unit had received some attention in, for instance, 10 sources such as Private Eye. Were you aware of outside 11 criticism being directed to it at any point? 12 A. My first awareness of this Private Eye article -- I used 13 to attend the catheter meetings, the clinical meetings, 14 and there was discussion at one of them. There was 15 a lot of I think anger and concern about what had gone 16 into Private Eye. I did not actually -- I do not think 17 I saw the article, but from what I understood, the 18 suggestion was that there had been leaks of information 19 from meetings and that someone had written up 20 a derogatory article. 21 My understanding of that article was that somehow 22 someone was trying to discredit the cardiology work in 23 Bristol and the BCH. I did not take it as being alarm 24 bells, you know, that the standards were not good 25 enough. 0167 1 Q. So was the general attitude that the article had been 2 inaccurate in its portrayal of the unit? 3 A. I do not think I can actually answer that. As I say, 4 I got the impression there was a lot of anger and yes, 5 I think that the impression was that what went in was 6 somehow mischief-making. 7 Q. Who gave you that impression? 8 A. At the meeting there would have been the cardiologist 9 and the surgeons and possibly the anaesthetist. 10 I cannot remember. It was a general impression. 11 Q. So you are talking, are you, about one of the clinical 12 case conferences that would have taken place to discuss 13 the management of particular cases which took place 14 a certain time after one of the Private Eye articles had 15 come out? 16 A. No, what I was actually referring to was the meetings 17 where they showed the results of the catheterisation. 18 There were, I know, also audit meetings, which I did go 19 to. 20 Q. But you are not discussing that, you are talking about 21 one of the clinical -- 22 A. I am sorry, I cannot remember at which meeting that 23 would have been raised. 24 Q. If we could go briefly back to Jean Pratten's statement, 25 she sums up at page 11 of her statement her overall 0168 1 feelings about the service by saying that she felt the 2 financing of the supporting and counselling services was 3 inadequate and that even when posts were created by 4 funding from the Heart Circle, they were still 5 effectively supernumerary because they were given a low 6 priority by the Trust management generally. 7 Do you have any comments to make on that? 8 A. I would not use the terminology "low priority". I can 9 only speak personally, that I felt that particularly 10 once Julie Vass was in place, that management and the 11 Trust did support and was aware of counselling and 12 support needs of families. 13 But I am also aware -- I think I mentioned this 14 before -- that maybe where there was not a priority was 15 in not allowing some space within the cardiac team to 16 make room for looking at the needs, the emotional and 17 psychological needs of families. 18 So I think the Trust personally did support the 19 posts. 20 MISS GREY: Thank you very much, Mrs Vegoda. I kept you 21 there for quite a while. I think Mrs Mandelson may have 22 some further questions for you. 23 Examined by MRS MANDELSON: 24 Q. Thank you. Really just points of clarification, if 25 I may. 0169 1 At the very beginning you mentioned that you are 2 not a member of BAC, nor an accredited counsellor 3 through the BAC, but as a counsellor I am sure no doubt 4 you are aware of the Code of Practice and Ethics, 5 particularly relating to counsellors needing outside 6 supervision, and you did say that you were aware of that 7 in as much as you tried to talk to your colleague, 8 a child psychotherapist, and you had sought supervision 9 from a number of sources. 10 Was that an issue you actually took to your 11 manager, Julie Vass, and asked about regular formal 12 supervision for your counselling work? 13 A. I did not take it to Julie Vass. If I can go back 14 a step, when I sought the support of Paul Burroughs and 15 Madeleine Dunham, I felt that I was given adequate help 16 in discussing the counselling work I was doing on 17 individual families. 18 I actually felt that certainly Madeleine Dunham 19 was there and was available if I needed to go back to 20 her to discuss that particular area. 21 So if, for example, I had a family in where it was 22 quite long-term counselling work, that she was there and 23 she was available -- 24 Q. But on your long-term counselling work there was no 25 regular supervision in place. You are saying you could 0170 1 go if you needed it but you were not availed of regular 2 formal supervision? 3 A. I think I have to say that the vast majority of my work 4 was not the type of long-term, intensive counselling 5 I would have done in my previous job. I was very aware 6 of the difference. They were quite different in nature, 7 so that even with long-term parents, a lot of the work 8 would have been ongoing everyday support, rather than 9 in-depth counsellings, and where the issues of 10 counselling arose, or where I felt that I needed to 11 discuss those aspects, I had enough experience to know 12 that then I needed to go, for example, to Madeleine 13 Dunham. 14 Q. You did mention earlier that sometimes you did undertake 15 bereavement counselling and sometimes that was long-term 16 and long-term contact with families. Where would that 17 bereavement counselling take place? 18 A. Either in the families' home, if they lived locally, or 19 in the hospital. 20 Q. And that would be regular contracted contact? 21 A. I did not actually work in that way in the specific 22 post. In my previous post, if I can compare, because 23 I had a counselling input in both posts, but the 24 previous post, when I was working in a Child and Family 25 Psychiatric Unit, was very definitely contracted 0171 1 sessions regularly every week for a specific time, and 2 usually for a specific period. 3 The work that I did in the hospital, including the 4 bereavement counselling, was not necessarily regulated 5 in that way. I very much was led by the family, not 6 only what they wanted and what I felt was appropriate, 7 but also what other support and help they would have 8 been having. 9 Q. Thank you. When you talked about your new job, and you 10 are now a counsellor for all those families that would 11 not previously have had counselling and support, you 12 actually in passing said, "but not for the cardiac unit 13 now". Could you just clarify for me, then, if the 14 families from the cardiac unit need ongoing support and 15 counselling, where they get that from? 16 A. There is a cardiac liaison nurse in place. In fact, 17 I think one has just left and another has just taken her 18 place. I am not actually part of the team so I cannot 19 answer in detail, but my understanding is that that post 20 must be covering the needs of those families. 21 Having said that, I am occasionally specifically 22 asked by either nursing staff or somebody in the 23 hospital to see a particular cardiac family, either 24 because they have requested counselling, or because the 25 nursing staff feel that they need more psychological 0172 1 emotional input that can then be provided. 2 Q. Could you tell me, did you have a leaflet for families, 3 giving them advice, advice to parents following the 4 death of a child? 5 A. It would not have been a leaflet from me, no. There was 6 a book that was produced from our intensive care unit, 7 and there was other literature that was given routinely 8 to parents, and I certainly did check whether that 9 information was given to parents, so I did not actually 10 give a specific piece of paper to parents. 11 Q. So there was no protocol in the sense of what would be 12 given. So in terms of advice and literature given to 13 a family seen by you, it might be very different to any 14 literature given to a family that might be seen by 15 Helen Stratton? 16 A. I cannot answer that, because I do not actually know 17 what literature Helen Stratton would have given the 18 family. So I am afraid I cannot answer that. I know 19 what I gave them. 20 MRS MANDELSON: Thank you. 21 THE CHAIRMAN: We have one question from the Panel. 22 Professor Jarman? 23 Examined by THE PANEL: 24 PROFESSOR JARMAN: Yesterday Helen Stratton was telling us 25 that in the last year of her work, roughly from April 0173 1 1983, she was under a great deal of stress. A lot of 2 this stress was due to the fact that she was worried 3 that operations were taking longer than average. After 4 talking to colleagues in Bristol and Great Ormond 5 Street, she felt that they were longer than they should 6 have been and that possibly they were associated with 7 higher mortality rates. 8 She tried to talk to people about this, and one of 9 the people was Mrs Jean Pratten, who confirmed that 10 today. 11 You met Helen Stratton every week, I think, and 12 one aspect of your expertise is in communication 13 skills. Did you detect her worries that she talked 14 about? 15 A. No. I was fairly amazed at the degree, which is 16 becoming apparent now, to which she was under stress. 17 I do not think it was that I was not aware of it; it was 18 not shown to me. It certainly was not communicated 19 verbally to me. I was not aware of it in her body 20 language or how she looked or how she seemed. I know it 21 is wrong to go back in hindsight, but I think I can only 22 assume that some of her maybe difficulties in 23 communicating might have been because she was under 24 stress and perhaps felt that she could not talk to me 25 about it. But I was not aware, no. 0174 1 PROFESSOR JARMAN: Thank you. 2 THE CHAIRMAN: Just following up that question: you talk of 3 her difficulty of communicating. If communication is 4 a two-way process -- in part you have I think answered 5 this, but I am asking again -- did you for your part 6 pick up nothing from her, although you saw her so 7 regularly? 8 A. What I picked up from her was a very -- very personal. 9 I did not interpret her behaviour as being a sign of 10 stress. What I interpreted it as was a very personal 11 antagonism to me and a lack of trust at a very, very 12 personal and professional level. Had I picked up that 13 there was that sort of stress, then I hope I would have 14 responded to it. 15 THE CHAIRMAN: Thank you. Mr Whitcombe? 16 MR WHITCOMBE: I do not have any questions, thank you, sir. 17 THE CHAIRMAN: I am grateful to you. I repeat what 18 Miss Grey said, Mrs Vegoda. Thank you very much for 19 coming to talk to us this afternoon. We have kept you 20 there a long time but it has been very helpful to us. 21 As I say to everyone we have the advantage of 22 talking to, if there are other matters that come to your 23 mind that you wish to bring to our attention, or some of 24 the matters on which you were not entirely able to 25 recall what might be the answer, if you are able 0175 1 subsequently to recall an answer, then we would very 2 much like to hear from you and you may get in touch with 3 us at any time. But for today, thank you very much 4 indeed. 5 (The witness withdrew) 6 MR LANGSTAFF: Sir, may I pick up on the last comments which 7 you were making about the importance of those who have 8 given evidence adding to, supplementing or clarifying 9 the evidence which they have given after the event, if 10 they think that is necessary. 11 To encourage anyone who feels that that is what 12 they should do by an example: Mrs Spicer, who gave 13 evidence to us on Monday, has supplied today -- she came 14 to the Inquiry personally to deliver a clarification, 15 because she was concerned that part of the evidence 16 which she had given did not faithfully reflect what she 17 was trying to say. Anyone who reads her evidence should 18 read it now subject to that clarification, which is 19 entered as WIT 253/21, so that those who read 20 Mrs Spicer's evidence will read it subject to that 21 particular document. 22 Sir, that leaves us today with Mrs Mandelson, who 23 has been with us patiently all week: patiently, I think, 24 from the public perception. For our part, may we 25 express our gratitude to her for her appropriate 0176 1 questioning of the evidence and for her support. 2 I wonder if she may now be asked one or two 3 questions to summarise this week, perhaps briefly 4 bearing in mind that this is the last public working day 5 of our week, and may I invite her to take the 6 affirmation? 7 MRS VALERIE MANDELSON (AFFIRMED): 8 Examined by MR LANGSTAFF: 9 Q. There are three areas that I want to explore with you, 10 Mrs Mandelson. The first is in relation to the 11 structures and systems which you see as having operated 12 at Bristol during the years we are concerned with. 13 Secondly, it is identifying from your expert 14 perspective the nature of the services in general that 15 were provided. Thirdly, I am going to ask you how that 16 compared with the rest of the country at the same time. 17 So first of all, would you like to make any 18 comment about the nature of the structures and services 19 that existed? 20 A. It is very difficult in one sense, but one of the things 21 that came to mind as I was listening was one of the 22 phrases that is bandied about a lot at the moment in 23 health documents that I am reading through in my own 24 work is the phrase about "joined-up services". I think 25 when we are talking about joined-up services, generally 0177 1 speaking, I think at the moment that is about health 2 services, social services and local authority services, 3 but I think it was the need for joined-up services 4 within the hospital that in some sense seemed to be 5 lacking. 6 In terms of structure, I think it is very 7 important when we think of the need for line management, 8 and line management not only so that there is 9 accountability, but there is also support and 10 supervision of people carrying out a very difficult 11 job. In a sense, that reflects on the service that they 12 are able to deliver to the users of that service, 13 because anyone who is under a great deal of pressure and 14 stress emotionally, obviously then it is very difficult 15 for them to question the service that they are able to 16 deliver and to service users. 17 Q. The structures and the systems that were in place: to 18 what degree do you consider that the descriptions which 19 have been given, again taking it generally, indicate 20 a degree of isolation on the one hand, or, on the other, 21 a degree of co-operation and co-ordination that one 22 might expect to find in the late 1980s and early 1990s 23 in this area? 24 A. I think the question of isolation is one that would be 25 quite common in a sense, because I think in the late 0178 1 1980s this was a fairly new area of work. 2 I think bereavement services, bereavement support, 3 counselling, was something that people certainly in the 4 mid-1980s, they were doing as part of their work rather 5 than being specifically employed in that position. It 6 was an add-on; it was an extra. I think there were 7 a lot of people working very hard to raise awareness 8 around the issues and the needs of bereaved families and 9 bereaved parents, and I think with that push, we have 10 seen the development of some of these dedicated posts, 11 but very often, in a hospital you might just get one 12 person doing that. 13 So what needs to happen, and is absolutely crucial 14 in those circumstances, is peer support and peer 15 co-operation that that person needs to fit into part of 16 a team, because I think it is very important, when we 17 talk about support for families, we are not talking 18 about just the support that the family gets at the end; 19 it is part of a continuum of care. 20 There has been a lot of discussion over these last 21 few days, and I guess some confusion around the terms 22 "support" and "counselling" and I think they are 23 different. I am not saying one is better than the 24 other; I think in some ways they are different. I think 25 that also we are talking about people using counselling 0179 1 skills and that what we need to see developed is 2 a system where people work together on this continuum 3 where we may have nurses who have training and 4 counselling skills, health professionals, that would be 5 using those skills to support families and to support 6 parents. Then you might have the more specialist 7 workers, the nurse specialists, family support workers, 8 who would be able to offer more to families, and then, 9 if families need it, there would be counselling 10 available, if that is what families need and choose. 11 People have talked also about families being able 12 to make choices. They need to be informed choices, but 13 also, they can only make choices if the services are 14 there for them as well, and opt into counselling, if 15 that is what they want. 16 Q. When you distinguish between "support" on the one hand 17 and "counselling" on the other, what definition do you 18 give those terms? 19 A. I think "support" is about some of the skills that 20 people have used: listening skills, empathy, being 21 alongside a person at a time of great emotional stress 22 and distress. 23 For me, "counselling" is something on a deeper 24 level. I still see it as something that is more formal, 25 that is something that is entered into with the person 0180 1 who is the parent or the family, or the client, whatever 2 term you want to use. 3 Bereavement counselling actually provides a means 4 of expressing grief in a much deeper way, and working on 5 some of the tasks of mourning, facing the reality of the 6 loss, perhaps experiencing the pain of that loss, and 7 working with families in adjusting to daily existence 8 without a very much-loved child and all the stresses 9 that that might bring in terms of family stress, marital 10 stress, self-esteem; and, I guess, working with 11 families, helping them find future direction and reason 12 for living and going on. I think if you see that as 13 what I would term as bereavement counselling, then you 14 see that as a different task, I guess, than supporting 15 families through very difficult times, of critical times 16 and critical stress. 17 Q. You have answered, I think, or explored the first two 18 areas, albeit briefly, that I addressed to you. The 19 third, the question how did the services and systems 20 that operated as you see it, having listened to the 21 evidence at Bristol, compare with those that one might 22 have expected to find in the rest of the country at the 23 time? 24 A. I have already touched on the fact that I think 25 certainly in the late 1980s, people were becoming very 0181 1 much more aware of the needs of families, and I guess 2 trying to take a much more holistic approach to health 3 and a greater understanding of the relationship between 4 emotional and physical well-being. 5 I was aware at that time of working parties, 6 certainly within the hospital that I am part of, another 7 establishment looking at developing bereavement 8 services. I think in the main, as I have already said, 9 it was about individuals working. The centre of which 10 I am a part opened in 1988 and at the time was the first 11 centre of its kind in the country, and as such received 12 a lot of media attention, received a lot of attention 13 from people working in this field. We have already 14 heard Helen Vegoda say she paid a visit to the Alder Hey 15 Centre. It seems a centre of excellence. I guess that 16 reflects on what is not around in the rest of the 17 country, perhaps even today, although certainly in the 18 last ten years I think there have been great strides in 19 trying to establish bereavement support as an integral 20 part in many ways of services available to families. 21 Q. So there was not much around in 1988, is what you are 22 saying, when the Alder Hey Centre started, and 1988 when 23 Helen Vegoda began on her own at the Bristol hospitals. 24 By the time that Helen Stratton left in early 1994, was 25 it fairly common to find structures for support and 0182 1 counselling in most critical units? 2 A. Of one kind or another, I think it is undertaken by 3 different disciplines. You may well find in some 4 hospitals still it would be specialist social workers; 5 in Leeds, certainly, there are structures that I am 6 aware of through their Accident and Emergency Department 7 doing a lot of work on bereavement support. So I would 8 say that by then, not only were there structures 9 locally, but certainly there were lots of networks 10 nationally for people working in this area of work, 11 National Association of Bereavement Services, 12 et cetera. 13 MR LANGSTAFF: I do not know, sir, whether the Panel may 14 have any questions for Mrs Mandelson? 15 A. Could I add one point? One of the things that I feel is 16 very important and I did not mention is the need for 17 protocols. I think it is so easy for people and 18 families to fall through the gap, certainly when there 19 are lots of families, lots of demands on services and 20 resources are scarce. We need to ensure that there are 21 protocols in place for referral, from management of 22 referral systems, et cetera, to try and make sure that 23 happens as little as possible. 24 MR LANGSTAFF: In your case, Mrs Mandelson, I shall not 25 extend the usual invitation to supplement if you feel 0183 1 like it after today, because in your case the 2 Secretariat will undoubtedly be in touch with a request 3 that you should do so should it be thought of further 4 assistance to the Panel. But may I for my part thank 5 you very much for everything that you have done? 6 THE CHAIRMAN: Before I add my thanks and those of the 7 Panel, I did have one question which I was going to 8 interject. 9 Mr Langstaff will tell me whether it is 10 appropriate for you to respond or not. 11 Examined by THE PANEL: 12 THE CHAIRMAN: I was just wondering if you could make 13 a general comment from your experience: if you find 14 professionals who are not seeing eye to eye when both 15 exist for the service of others, how would that 16 ordinarily have been managed, in your experience, 17 bearing in mind your reminder of the ethics of the 18 profession they both are part of? 19 A. I would think, like many other professionals, one would 20 have hoped that it was something that they would have 21 felt able to address at local level, if you like, but 22 then someone else perhaps to facilitate, to look with 23 them at what was going on. I mean, people not seeing 24 eye to eye is not unusual, I guess, in all walks of 25 life, in all professions, but you would hope that when 0184 1 people are dealing with emotion and communication, that 2 they would be able to call on someone. That was a part 3 of my thoughts around supervision and management, that 4 this would be something that would be able to be 5 addressed with a third party that would be able to sit 6 down and work with them, and that in that profession, 7 they would have been very willing to have done that. 8 MR LANGSTAFF: Can I just pick up on that question, sir? If 9 one is looking at it as a management issue, the question 10 might be asked whether the intervention should come 11 sooner or later. How soon would you expect it to come 12 if the signs were there that people were beginning not 13 to get on well? 14 A. The sooner the better. 15 THE CHAIRMAN: Mrs Mandelson, I know what a help you have 16 been to counsel and others. You have been a very great 17 help to us. Your very presence sitting there is to 18 a degree reassuring. What you had to say at the end, 19 although relatively brief, has been extremely helpful 20 for us, showing insights we will be able to take away 21 and discuss. 22 So we are very grateful to you for having given 23 your time, spending your time here in Bristol. I know 24 that there may be further calls on your time 25 subsequently, but for today and now, we are very 0185 1 grateful. Thank you very much indeed. 2 Mr Langstaff? 3 MR LANGSTAFF: Sir, on Monday it is Sir Donald Irvine from 4 the General Medical Council. He is followed by a week 5 during which we will listen to expert clinicians who 6 together and in, as it were, seminar format, which we 7 are now I think familiar with, will tell us about the 8 risks and procedures, diagnoses and descriptions of the 9 various conditions about which we will hear more. 10 THE CHAIRMAN: Thank you, Mr Langstaff. We meet again at 11 10.30, since it is Monday. Until then, therefore, good 12 afternoon to everyone and thank you again, Miss Grey and 13 Mr Langstaff. 14 (4.10 pm) 15 (Adjourned until 10.30 am on Monday 13th September 1999) 16 17 18 19 20 21 22 23 24 25 0186 1 2 I N D E X 3 4 MRS JEAN PRATTEN (Sworn) 5 Examined by MR MACLEAN ...................... 1 6 Examined by THE PANEL ....................... 78 7 8 MRS HELEN VEGODA (Sworn) 9 Examined by MISS GREY ....................... 84 10 Examined by MRS MANDELSON ................... 169 11 Examined by THE PANEL ....................... 173 12 13 MRS VALERIE MANDELSON (Affirmed) 14 Examined by MR LANGSTAFF .................... 177 15 Examined by THE PANEL ....................... 184 16 17 18 19 20 21 22 23 24 25 0187