Annex A > Chapter 17 - Communication Between Healthcare Professionals and Patients > Parents' evidence on the management of care and their encounters with other healthcare professionals at the UBH/T
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Parents' evidence on the management of care and their encounters with other healthcare professionals at the UBH/T
298 Belinda House stated in her written evidence to the Inquiry that there appeared to be a shortage of staff and resources at the BRHSC, which she noted when her son Ryan was transferred from Southmead Hospital for his scan and catheterisation: [347]
`A Senior Nurse had to accompany Ryan with the equipment when he was transferred, but there needed to be someone of equivalent standing remaining in the SCBU, and it seemed that they could not find the necessary staff. At one point we even offered to pay for an Agency Nurse ourselves as no progress was being made. It also then appeared that there was no ambulance available in the whole area with the equipment needed for such a Transfer. It was a horrific situation for everyone concerned, until eventually a suitable ambulance was located. This was the beginning of our education to the fact that the NHS, at the time, was desperately underfunded, so much so that Ryan's life was put at risk.' [348]
299 Belinda House referred to events during the post-operative care of Ryan in the ICU:
`While sitting at Ryan's bedside my partner Julian noticed that the ventilator had run out of water as the nurse, who was a trainee on the ITU, had failed to check and notice this. Julian alerted the nurse who quickly filled it up. Unfortunately this was too late and Ryan's ventilator tube had become blocked with mucus which caused him to begin to suffocate. He had to be rushed back down to theatre to have a new tube inserted. Following this Ryan needed further sedation making him more dependent on the ventilator. This was a huge setback in Ryan's recovery and appeared to result in him developing a kidney problem, even though it was ultimately sorted out. The kidney problem meant that Ryan stopped passing urine and had excessive fluid in his body. They had to drain fluid from between the membranes of the chest cavity and apply intensive physiotherapy to get rid of the fluid.
`On another occasion we returned to Ryan's bedside after a short break and found that the window next to his bed had been opened and his blankets removed. The nurse caring for Ryan was used to adult heart patients becoming very hot, but the opposite was the case for Ryan, and he needed to be kept warm. Maintaining ideal temperatures for patients with very different requirements while in adjacent beds was a continual dilemma for the nurses. Ryan quickly turned blue, making the nurse, who appeared to have little experience of babies, quite distressed and she was about to call for a Doctor until a more experienced nurse took control of the situation and warmed Ryan.' [349]
300 Belinda House told the Inquiry:
`... at one point Ryan appeared to have some kind of kidney failure. He had stopped passing urine ... it was after his tube had become blocked. To us it seemed like the system had gone into shock; other children on the ward had kidney failure. And the children started to blow up, and it was something that was a great concern to the staff because once that happens, their whole system goes into deterioration. We knew this; we had the feeling we had kind of non-verbal messages from the nurses that Ryan was in deep trouble at this point. He had stopped passing urine. There was nothing further they could do, apart from diuretics, which were not working. Ryan was getting bigger and bigger and not passing urine, so we had a friend who was an acupuncturist, and we asked him what he would suggest, and he said he could treat him for that. Mr Wisheart said "I cannot allow the skin to be actually punctured, but I will discuss it with the rest of the team." He did discuss it and he allowed our friend to treat Ryan and within, I suppose, four hours, he started urinating and he was on the road to recovery. I remember Mr Wisheart coming round and he was very pleased with his progress.' [350]
301 She described her interactions with the staff:
`I feel in the beginning ... I think the staff were very aware, "Do the parents really want to know the answers?" and as the time went on, when they realised we did want to know the answers and we were going to get the answers, they were very forthcoming. In the end, the nurses were asking us how we felt all the time, as I am sure they did with other parents, "How do you think the baby is?", "What do you think ought to be happening next?"
`... One incident comes to mind. Ryan would not settle with his level of sedation, so I think ... they could not seem to get it right. His heart was either going too slow and his body was writhing about, they could not seem to get it right, so I think they were going down in certain units, I do not know, half a ml, 0.2 of a ml, I did not know. We said, "Why not go down in 0.05 of a ml?" They said that would not make any difference. We said, "Why not try it? It can't do any harm." They said they would do that and he responded to it. He was obviously more sensitive than most babies.' [351]
302 Belinda House said that she was given the opportunity to do practical things for Ryan, including:
`... cleaning him, changing nappies. As he got better, I took more and more care in the nursery, which was a high dependency unit. It was total care in bathing, cleaning, changing nappies and feeding. On ITU when he did not have any tubes, we were feeding him.' [352]
`... we did things like got our friend to give him acupuncture; we fed him garlic for an antibiotic. We gave him garlic to improve his bacteria, yoghurt and all sorts of things, cod liver oil, everything. We felt we had to fight to make him survive as much as any other professional there, and of course, we expected Ryan to die any minute, and babies died.' [353]
`... I think the nurses read each parent very carefully and they wanted [the parents] to become involved with the babies, not to off-load any work for them [i.e. the nurses], but just because they knew that was a very important step in the recovery of the child ...' [354]
She described the nurses as `totally dedicated and always listened to us'. [355]
303 Amanda Evans, mother of Joshua Loveday, gave her impressions of the BRHSC in her written evidence to the Inquiry:
`In general, I remember that the level of information I received, as a parent, in the BCH, was very good. The staff would always let you know if they thought anything was amiss and never gave any false hope. They all seemed competent, and I got quite friendly with Joshua's nurse. She taught us how to administer a drip-feed and how to change nappies when there are wires in the way; I remember that the last procedure was, in practice quite complex.' [356]
304 Amanda Evans explained how she and her partner were notified of the date for Joshua's operation:
`... a couple of weeks before Christmas ... we returned to my grandfather's house, he informed us that he had just received a call from Mr Dhasmana's secretary. Apparently, there was a bed available for Joshua. If we wished the operation to proceed, we were to go to the hospital that evening.
`... we could not contemplate an operation now as it was too close to Christmas. Consequently, we telephoned Mr Dhasmana's secretary and said that we did not want the operation to take place, as it was too near Christmas. She said that she would pass the message on.' [357]
The operation date was then changed to January, and they were able to spend Christmas together.
305 Malcolm Curnow told the Inquiry of his experience concerning the date of his daughter's operation:
`There was no problem in the fact that we had a month's notice; the problem was that we had no information prior to that, or confirmation that this was going to happen. We were left very much in abeyance and in the dark. If someone had said to us, "She will have an operation, it will be around September time, and we will give you a month's notice", then that would have satisfied myself. I was receiving no information back from the hospital about the likelihood of her having an operation at that point in time and I was wanting to know ... I needed to plan, we needed to plan. A month is acceptable, I have no criticism of that, but I would have liked a lot more information in the lead-up to it that this was going to happen. We were left with the impression that it could, or it may not. All I wanted to know was that it was going to happen; nothing more.' [358]
306 Malcolm Curnow described an incident with one of the medical staff, which he said was distressing:
`... once we had established ourselves in the hospital, on the very first evening, obviously, a number of nursing and medical staff came and undertook a number of checks. The one that sticks in my mind and will remain with me forever, until the day I die, is the arrival of a doctor. He was of foreign descent, I did not know his name then and I do not know his name now. He arrived and at the time my wife was nursing Verity in the chair beside her cot. He wanted to take blood from Verity and he tried several times to extract blood from her left arm. He was having great difficulty in doing so. He did not appear to me to be competent and proficient in trying to extract the blood. I had seen GPs take blood from her, I had seen doctors on previous occasions take blood from her with the catheterisations, and in my professional capacity, I had seen samples of blood taken on hundreds of previous occasions, but I immediately was unhappy with the way that this was being done.
`He persisted several times trying to take blood from her left arm and could not withdraw a sufficient sample to satisfy him. Obviously, this was distressing Verity greatly. She was becoming increasingly blue and agitated; she was crying in a most piercing, painful sort of way. My wife was becoming distressed. He then asked and attempted to take blood from her heel.
`On the first attempt, the pain was so excruciating for Verity that she began to obviously, move violently, to the point that was itself exacerbating the situation. I had to take over, my wife could no longer restrain Verity. I had to take hold of her physically in a restraint position and actually force her leg into a position where it would remain static whilst he took the blood.
`My lasting memory, as he inserted the needle into her foot, was her looking at me as if to say in her eyes, "Daddy, why are you letting them do this to me?" and that look in her eyes will last with me until I die. He took the sample and he left the room, and we never saw him again.' [359]
307 Malcolm Curnow also referred to the physiotherapy that Verity underwent:
`We were led to believe in the first day that Verity was suffering a build-up of fluid on the lungs, and in order to dissipate that, that she required quite vigorous physiotherapy ... we knew that when Verity exerted herself and became stressed, that this exacerbated her problem. So when we see her coming off the ventilator and being very vigorously exercised by the physiotherapist, which certainly to my wife's view, and mine, was causing further distress to Verity, and I say that because once the physiotherapy was completed, she was struggling to hold, you know, any stability, and she was obviously visibly worse after the physiotherapy than she was before it. She required hand bagging, and sometimes for a considerable period of time, during the physiotherapy. My wife's intuitive feeling was, "This is not good for her; this is not doing her any good; this is making her worse, this is exacerbating the problem." When you see your child being exercised as vigorously as she was, and it is supposed to be doing her good, but you can only see it making her worse, you are naturally concerned. We expressed our feelings to the physiotherapist. Her reaction was very abrupt: "I have to do this; it will make her better. It is for her own good.'' ` [360]
308 Diana Hill recalled events after Jessica's death:
`Someone brought me Jessica to hold. She was cold, and wrapped in a blanket. I cannot remember if I was asked whether I wanted to do this. I still find this a horrific memory and I know I will never be able to forget it.
`... When we went to collect our belongings, no nurses came to see me, everyone who had been looking after Jessica seemed to disappear.' [361]
309 Michelle Cummings described the ICU ward:
`... sometimes you found that you had a nurse 1 to 1, so there was one nurse looking after Charlotte on a continual basis; other times there was one nurse between two patients.' [362]
310 Michelle Cummings told the Inquiry of an encounter (when the ICU was being closed down) where, in her words, the hospital took a `gamble' with Charlotte's life:
`... the new Ward 5 intensive care unit had finished being built. So it was obviously due to be opened. What happened next was, we noticed that as the days were going on, less patients were being brought into the Intensive Care Unit, and eventually it stopped. We were told that the Intensive Care was being shut down to open the new Ward 5, and that two politicians would be coming around to open it, and that was Kenneth Clarke and Edwina Currie ... We were really concerned about this, because Charlotte, after she had had the cardiac arrest, was seen to be in limbo. She was not moving either way at that point, and we were extremely concerned. She was extremely poorly, and there was another child who was also extremely poorly, and we were told, without question, that the ward, the Intensive Care, was being closed and that was it. I was not happy about this at all.
`What happened next was that we were told that they had tried to find life support machines in other parts of the hospitals and had only been able to find one and as the other little girl at that point was considered in a more critical condition, it was opted that she should be given that life support machine.
`Charlotte was to be sent to the Children's Hospital and put in intensive care there on a life support machine, but they could not move her for a couple of days. Anyway, inevitably, the visit was happening and the children had to be moved.
`... she had to go to the Children's Hospital and they assured me that she would be given - she had to have a life support machine, obviously, at the Children's Hospital, so when the day came for the move, which, off the top of my head, was Monday 27th June, they came around and they took her off the life support machine, and she had to be hand ventilated because she could not breathe on her own.
`... She was moved by ambulance to the Children's Hospital, straight through casualty, and up to the Intensive Care and they did not even know we were coming. There was no intensive bed for her, no life support machine, and they were still hand ventilating her, so we went through to the baby unit and they were full up. There was no cot for her in there, because they were hoping they could have set up a mini intensive care in one of the rooms for her. [363]
`... There was not [a ventilator] and there were no beds in the baby unit, and she ended up being put on the bed of a child who had gone down to have his tonsils out whilst they decided what to do with her. I have to say, at this point Mr Dhasmana, who at the time was caring for Charlotte because Mr Wisheart was away, he actually had no knowledge of what had gone on until his return, and he was furious, that is the only way I can describe it. The man was furious. He had not even been told she had been moved at that point, and he was absolutely livid when he got to the Children's to find us there and in that predicament. In fairness to the man, there was very little he could do at that stage. It caused untold distress for the nurses and doctors who were actually looking after her, let alone the unacceptable gamble that we had to witness being taken with her life.' [364]
311 Robert Briggs, father of Laura, told the Inquiry that in 1988:
`We saw Helen[Vegoda] several times. She was available quite a lot of the time that we were there if we needed to see her. We also saw people from the Heart Circle, and Helen Vegoda arranged for a family to come and meet us where one of the children had had very similar heart surgery. So it was very, again, reassuring to be able to speak to somebody who had already been through it and to draw on their experiences.' [365]
312 John Mallone referred in his written evidence to the Inquiry to an incident in the ICU that reflected on the communication between management and the ICU's staff:
`Josie's life was entirely dependent on the pieces of apparatus that surrounded her. On one occasion, I counted them all: the equipment was connected to thirteen electrical sockets. On one occasion during the fortnight before Christmas, the management of the Children's Hospital decided to cut the power, in order to test the emergency generator. It appeared that no one in ITU had been warned that this was going to happen. There were as many as seven or eight children dependent on artificial ventilation at this time. The power can only have been lost for about twenty seconds, but there was a real panic as staff scrambled to find hand-bagging equipment to keep the children breathing. They repeated the experiment later on during Josie's stay but, on this occasion, they alerted the staff to their plans, and the nurses were standing by when the time came.' [366]
313 This incident was explained by Mr Warr, the UBHT's maintenance officer:
`It was the accepted procedure at that time to carry out an "on load" generator test once a month on a regular basis, it was the practice of the day to let a number of departments know of the imminent change over of supplies due to the 15 second delay in the restoration of power to hospital systems.
`Then, as now, ALL departments are notified of a full years test dates in advance, then as now PICU, Theatres, Baby unit and Cardiac Catheter are notified of the imminent test procedure.
`The particular test took place at the predetermined time and date in December 1990, the generator situated in St Michaels Hospital was new, around three months old and had been fully tested and commissioned. It had been run "on load" a number of times without incident.
`Part way through the normal test the generating set stopped, this of course led to a failure of the essential electrical supply to all area's, fortunately I was in the vicinity of the generating set and heard it stop, I immediately went to the generator room to assess the situation, it was not obvious why it had stopped so I took all the necessary steps to restore the normal electricity supply.
`From memory I would estimate that the hospital was without the electricity supply for approximately two to three minutes.
`Subsequent investigation of the breakdown revealed that the engine fuel pump and metering device had malfunctioned and was replaced under warranty.' [367]
314 Tony Collins told the Inquiry that an ambulance was arranged to take his son, Alan, from Princess Margaret Hospital, Swindon to Bristol but that:
`There were difficulties in the sense that when the ambulance arrived at Princess Margaret's Hospital, the ambulance crew were not sure if the incubator Alan was in, would actually work in the ambulance they were going to use. And we had an agency nurse who had only come on duty and a doctor who had only just come on duty and none of them knew much about what had happened to Alan during the previous night. For all that, they were very good and Alan got to Bristol with no problems.
`... I was actually told I would have to catch a train to Bristol because there would be no room in the ambulance with me and the doctor and the nurse and the rest of the people who were involved, to which the Sister who had actually come down from the ward with us insisted I did go in the ambulance. So I did go in the ambulance eventually, but there was a bit of an argument beforehand as to whether I should go in the ambulance or go by train.
`... I found it very difficult that they were saying to me I possibly could not go in the ambulance with my son, given that I was being told he may not be alive when I got to Bristol. Also I had never been to Bristol in my life before, so I did not know where the Children's Hospital was, but also I did not know if Alan was going to be alive when I got there.' [368]
315 Tony Collins went on to describe the treatment which Alan received on arrival at Bristol:
`I would say the care that Alan received when he actually arrived in Bristol was second to none in the country. He could not have asked for a better surgeon and the staff there were brilliant, so I have no problems with Bristol at all.
`... When we arrived, we were met by several staff at the hospital who took time to explain to us exactly what was going to be happening with Alan, and what the procedures would be. We were given a room to stay in, and there was always somebody there if we needed to talk, and everything was just explained to us from the moment we arrived.
`... up to actually arriving in Bristol, I did not feel as if we were really being that involved in what was happening with Alan. Once we arrived in Bristol and the staff talked to us and explained things to us, I felt as if we were being brought in and had a lot more to do with our son's care and what was going on with him.
`... from the lady cleaning the ward to the surgeon [they] would always be available to talk to you if you needed to talk, whether it was about Alan or any other issue on your mind at the time. A member of staff was always available.' [369]
316 Susan Darbyshire, mother of Oliver, told the Inquiry that she received a telephone call at about 10 am on 15 July 1993 telling her to go to the BRI by noon the same day so that Mr Dhasmana could operate on Oliver on the day after, 16 July: [370]
`We made it with five minutes to spare ... We filled in a couple of forms down in reception, at the BRI, and then we were shown up to the cardiac unit, shown Oliver's cot and then literally left alone all afternoon and we just could not understand what was happening. Oliver's surgery was due to happen on the Friday morning, and we knew there were blood tests, probably an echocardiograph to do, ECG, everything and nothing was being done; we were just being totally ignored. Nobody explained anything to us, nobody introduced themselves to us, only the nursery nurse that actually came to fill out Oliver's admissions.
`... Oliver's cot, his little space, was situated right opposite the Heart Circle office, and we saw a lady during the course of the afternoon coming and going, [she] appeared to be extremely busy. We assumed she was the Heart Circle counsellor for the parents, and the last we saw of her was about 5 o'clock when she locked the office door and went home. She did not introduce herself to us. We assume that is who it was. She did not introduce herself to us, so we were left literally stranded.
`... We were told ... by Helen Vegoda at the Children's Hospital, that there was a paediatric cardiac counsellor situated at the BRI ... She was coming and going all afternoon, she was so busy... We never had eye contact with her. She could not fail to see us, we were right opposite her office, but you could not make eye contact with the woman. She seemed to have a mobile phone stuck to her ear constantly all afternoon. [371]
`... She must have known we were coming, Helen Vegoda must have been notified when we were transferred over to the Children's Hospital ... Oliver was not due to be admitted until the Friday, but she must have been notified we were coming in as a cancellation or whatever for an opening, and Oliver was going to be operated on on the Friday. So we did not really even have time to get our bearings; we were in there, we expected tests to be done and Oliver to go to the theatre on the Friday. Surely she should have supported us.' [372]
317 Susan Darbyshire described what happened later that day:
`A doctor literally stuck his head around the door, did not introduce himself or say who he was, just to say "There is a message from Mr Dhasmana. Oliver's operation will not be going ahead tomorrow. He will be around to see you later." That was it. He disappeared. [I] thought, "Well, what is going on?" My husband came back. I was in a real bad state. We telephoned family, friends, everyone, "Oliver is being operated on tomorrow", and now we were told it was not going ahead, we did not know when it was going ahead. My husband went to reception to find out what was going on and nobody seemed to know anything.' [373]
318 Susan Darbyshire said that they later saw Mr Dhasmana who explained the situation:
`Mr Dhasmana came to see us ... straight from theatre. He was extremely apologetic. He said he had been called, I believe it was to Birmingham to assist on a life-or-death operation on a new-born baby, and he was really sorry that Oliver at that time ... was not classed as a life-or-death operation and he had no choice but to reschedule Oliver's surgery for the Tuesday morning. We were quite happy with that. If Oliver had been in the same sort of situation, we would have wanted that sort of service for him. Once it was explained to us properly, then we were quite happy with that.' [374]
319 Susan Darbyshire then described what happened later that evening at about 7 o'clock:
`We went down to the shop. We got back and we were told by a nurse that Oliver's operation was back on again, but this time Mr Dhasmana was not operating at all, it was Mr Wisheart. We had never even heard of Mr Wisheart, we did not have a clue who he was. All our faith was in Mr Dhasmana. He had operated on Oliver for the first operation. We trusted him completely, implicitly, and it was just a nightmare.
`... Then she came back and told us it was not going to happen on the Friday, it was going to be now the Saturday morning, and it would not be Mr Wisheart but his understudy. By then, I mean, it was just a joke. We just totally ignored the whole lot and thought "Until we hear from Mr Dhasmana what is going on, we will just take it with a pinch of salt", but it did not help. It really did raise the stress levels. We refused and said, "No-one is going to touch Oliver apart from Mr Dhasmana. We are happy with him operating, and it will go ahead Tuesday as planned." No one seemed to know what the other person was doing down there. It was just dreadful.
`... It was an awful situation. We felt really uncomfortable. We are not the sort of persons that like to complain. We were there for Oliver's benefit, we just wanted to get ready for Tuesday. We did not want problems thrown at us. We wanted to spend some time with him and enjoy the time we had left with him. We did not need all this. We just felt "As long as everything goes okay from now on in, let us all try and get on." It was just getting out of hand.' [375]
320 Susan Darbyshire said that on the night before Oliver's operation she and her husband were told they had a free licence to do with him as they wished, as he might not survive the operation. She said that they had been promised the `Blaise Room'and that it had been cleaned especially for them: [376]
`At 9 o'clock the evening prior to Oliver's operation, we asked for the key. We had baggage and things we wanted to get sorted out. They could not find the key anywhere, and it transpired the nursery nurse had taken the key to the Blaise Room home in her pocket so we could not have the room until the night after Oliver's operation. So my husband spent the night before Oliver's operation in the corner of the ward on a mattress, and I sat up all night in a chair.' [377]
321 In their written evidence to the Inquiry, Susan and Kenneth Darbyshire recalled an incident when a nurse prepared Oliver's drugs but the Digoxin was not the paediatric mixture, but the adult mix'. They went on that this led them to draw up Oliver's drugs themselves. [378] Mrs Darbyshire told the Inquiry that she found it `unbelievable' that her husband was given a `free licence' to the key to the drugs' cabinet so that they could draw up Oliver's drugs. [379]
322 Susan Darbyshire told the Inquiry about her first meeting, on 16 July, with Helen Stratton:
`She just sort of came over to us and she introduced herself. I spoke to her. My husband had no intentions of speaking to her, he was so disgusted with the fact she had not introduced herself the day before.
`... She must have known we were being admitted on that day, otherwise there was a great breakdown of communications somewhere.
`... She asked us to go into her office. I looked at my husband, he looked at me and before he opened his mouth and said a word, she made a statement: "I can tell you don't like me. I do not really care what you feel about me. I have been told, I have had this reaction from other parents, and I really do not care."
`... I went out of my way to be polite to her, to make up for the fact that my husband did not want to speak to her ... she should take into account parents are going to be stressed out, in a situation like that. ... She just asked if we were involved in the Heart Circle. Up to that time we had not been. Oliver took up all our time and the other children. She gave us a few leaflets and I think she mentioned a book we could buy and that was it, basically. We had no further contact with her until the morning of Oliver's operation. We still got our support from Helen Vegoda at the Children's Hospital. We phoned Helen up on a regular basis and spoke to her.' [380]
323 Susan Darbyshire recalled meeting a nurse:
`... we were introduced to another Helen ... She was going to be Oliver's personal nurse in ITU. She came in and introduced herself to us. She took us to ITU. We spent a couple of hours with Helen, I think on that evening. She took us into ITU and showed us the bed where Oliver would be. None of it shocked us because we had seen it at the Children's Hospital, the actual bed and tubes and everything, we knew what was going to happen to Oliver. She explained about the procedure, what would happen when Oliver came back from theatre. She was really nice; she was really helpful.' [381]
324 Susan Darbyshire told the Inquiry that Helen Stratton offered to carry Oliver down to the theatre for his operation but that she and her husband declined. She said that they also indicated that they were unhappy with the way in which Oliver was taken from them in the theatre:
`She [Helen Stratton] could see we were getting ready to take Oliver to the theatre. She came over and said she would accompany us to the theatre and would it be all right if she carried Oliver, which we adamantly refused and my husband carried Oliver to the theatre ... we were under the impression, we were told [at the Children's Hospital] we could stay with Oliver until he was asleep. We expected to be able to do that [at the BRI], and we got into the anaesthetist's room. Oliver was taken from my arms, I was not asked to hand him over, he was taken from me. He was screaming, he was crying, he was flailing around. My husband took him, they said "Have one last cuddle with Dad", and they gave him to my husband. He gave him a really quick cuddle and I had him back again and they ushered us out of the room and that was the last thing we saw: Oliver was flailing around in the nurse's arms, screaming and crying. That was totally unnecessary. We were told we could stay with Oliver until he was asleep. I kept feeling "If he does not come out of here, this is going to be the last impression we ever have of Oliver", and that was really upsetting. The time before, his other operations, we had always walked out of there and he was asleep, we could see he was peaceful and that was a good memory to take. It was a nightmare to watch him. They did not wait until we had got out of the room, they were poking things in him, I did not know what they were doing. I was just too upset by them ... [Helen Stratton] just ushered us out of the room, we were left there and we did not know what to do. We did not know what to do. We were told not to report back to IT for hours and hours. She did not give us any support whatsoever.' [382]
325 Susan Darbyshire said that they went to see Helen Vegoda for support:
`We went to the hospital canteen, had coffee, and then we walked straight up to the Children's Hospital and sat outside Helen [Vegoda's] office until she arrived ... She knew Oliver's operation was that day. We were obviously really upset and we went in. She made us tea and we sat with her for an hour and a half and we told her how disgusted we were with the treatment we had down at the BRI.' [383]
326 Justine Eastwood told the Inquiry of the strain of being in the ICU:
`[Oliver] was in an intensive care environment, which perhaps was a little bit of a strain on me. You could not really leave his bedside. This perhaps was my problem. I was perhaps relied on a little bit too much. I could not really even just pop out. Because I was looking after Oliver, he had maybe a Sister looking after him. They had other jobs to get on with, so I was left more to get on with it.' [384]
327 Justine Eastwood referred to the insight of the nurses in her written evidence to the Inquiry:
`I was very upset on 14 February [1994] to be told after an investigation by the ENT surgeon Mr Moore ... that Oliver would probably need another operation in the future and that because his condition was so unique, the future was uncertain. The nurse was perceptive enough to see how upset I was so that Dr Hayes came to talk to me later that day and informed me that ... all would be well, unless he got a really bad chest infection.' [385]
328 Justine Eastwood referred to another occasion, on 21 June 1994, when Dr Mather discussed the options which were available and told her `that we were coming to the end of the line'. Justine Eastwood said that Dr Mather told her `that Oliver was not getting any quality of life at the moment'. [386] She stated: `As before, a nurse was perceptive enough to work out that I was shaken up by the talk by Dr Mather and got Dr Hayes to come and talk to me.' [387]
329 Marie Edwards, mother of Jazmine, recalled an encounter she had in 1993 with Dr Joffe:
`He did not tell me she was inoperable; he basically said "Go home, take her home, she will be dead by the weekend." He did not use the words "She is inoperable." He just told me "There is the door, please leave. You are wasting our time, you are wasting our resources and another child could do with the bed that your daughter is laid in."' [388]
330 Philippa Shipley compared the nurses and nursing care which she witnessed at Liverpool with that in Bristol:
`... when Amalie was admitted, [somebody] dropped a child off and left. We ... just looked after him. I think he was operated on the same day as Amalie. I thought that that would not have happened at Liverpool. The ward sister ... held it together with a real iron fist ... There were three, they were all chopsy Liverpool girls, but that was the one who was particularly in charge. She would take great steps to organise the care of the children. Obviously parents could not be there all the time and if children were going to be there 10, 11 or 12 weeks, as was the case with us, you would not expect the parent to be there all the time. I certainly heard one conversation about a little boy, the sketches of Paul Broomhead in a book. She rang them up and said, "Your son needs a pacemaker. Get to the hospital. It needs doing now", and rang them at home. I remember that conversation.
`I can also remember a little girl called Claire who was dreadful sickly - all heart children are dreadful feeders, really. Her mother, I think, had a lot of other children and could not get to the hospital very often, so it was arranged that Claire would go to Warrington and the nurses were brought to Liverpool and told how to feed her, so they could take her back to Warrington and her mother could learn how to start to feed her. Although there was quite a good element of control there [Bristol].
`... I did not really see a great deal of the nurses. We had one very brief stay at St Michael's Hill. The chap who admitted her, who shot over, was doing his exam for the Royal College of Surgeons the following morning. "We are going to get a complex case like this. I am going to admit your daughter." He wrote out the wrong drugs, which the nurses did point out, and we had to continue to administer our own supply. The nurse who brought her back from the catheter lab did not seem to realise that Amalie was very hot. She said she had a temperature. I said she will have; she was wrapped in a huge amount of blankets, far too many. If somebody is hot, you do not cover them in something, do you, you remove layers, which I did. Then we left the following day.
`At the BRI, when we first went into the ward for admission, she was quite theatrical; she came from Wales so she told us about Bryncethin and was chattering away, quite flamboyantly dressed. As we got into the ward, a nurse said "Nobody likes her." It was an odd thing to say. She was the receptionist of the ward. At Liverpool, the Almoner there, who had a similar role to Helen Vegoda, she looked like Miss Marple but nobody ever said so; they did not make observations like that. I thought at Liverpool - I am not trivialising this - it existed more as an organic whole, like it was a more cohesive unit.
`... It was one team really, that was the impression I would have from Liverpool. I think there were things they could have controlled better at Bristol. Certainly there was a baby in the bed next to Amalie and another little girl who had been there 10 weeks, and the mother had two of her other children staying with her. Really, they disturbed Amalie and I wanted her to be in the best most rested position. At night they would be jumping on her bed and all sorts of things. I thought the nurses should really have taken steps to control that. That is one thing I thought. We did not really see a lot of them, to be honest. The night Amalie was in ITU, there were three of them down the end of the ward watching TV. That was the main ward. I can remember one sister in ITU. I can't really remember a great deal about seeing a lot of them.' [389]
331 Marie Edwards told the Inquiry of an encounter which she had with the nurses and Dr Joffe:
`I used to cross-sign all the medication because I found I could not remember which of the two drugs Jazmine took. It was kept in the fridge and it was particularly cold and if you put that down the NG tube, it would make her react, to retch. So I used to run it under the tap in the actual syringe in the sterile packets, to lift the medication back up to body temperature. I found a lot of the time the nurses did not have time to dedicate to that, so I cross-signed and made sure the medication was brought up to body temperature, because she was vomiting quite a lot. It scared me to think I did not know how much medication was actually being absorbed.
`In the morning, the early hours of the Wednesday, I heard the medicine trolley being brought through the ward. This nurse administered Jazmine's medication in a matter of - it could not have been longer than three minutes. For me it is usually closer to 10 by the time I have filled the syringes and warmed one of them and pushed it down slowly so it did not hit the stomach and make her retch. I heard the trolley go away and I could hear Jazmine really struggling; she was retching. I could see she had been placed on her back, which really puzzled me. I remember hitting the emergency sirens to bring the nurses back as soon as possible because I was fearing from the colour she was going that she was going to have another heart attack. As she was being sick the NG tube was coming out and going back in.
`This nurse came in with the sister and I said "What is going on? Why was she left in her back?" In 1993 it was on your side. Jazmine could not sleep on her front because of her heart complaint; she did not find it comfortable. The sister actually informed me that my daughter was in the cot death research. I said who had given her permission to be in a cot death research when she is very very sick? She said, "All the babies are, here, and it is Dr Joffe who has given permission." I demanded to see him as soon as possible. They explained to me that he had worked to the early hours and they would get him to see me.
`... She was being placed at risk in my eyes, unnecessary risk ...
`Dr Joffe explained that whilst Jazmine and the other babies are on this ward, he is guardian, and basically, if he wants them on the cot death research, that is what he was going to do. I was really shocked and I said "I do not want her to be researched on. You cannot give me any guarantees of what would happen to her health if she did not react by turning her head when she threw up. Would she have asphyxiated? You do not know. That is what you are researching."
`[Dr Joffe's reaction was] "Fair enough, we will remove Jazmine." That was all that was said about it. But I was horrified to hear that sickly children were being used.' [390]
332 John Mallone gave the Inquiry his views on the nurses:
`I found the nurses were extremely sensitive and thoughtful to me all the time. Initially I do not think they were quite sure how to react to us. We were both staying in the hostel, which is immediately adjacent to the ITU ward in the Children's Hospital, so we were there perhaps 20 hours a day or something, by Josie's cot. They made every effort to involve us in her care ... I found it distressing at first because she had been paralysed. You had to press on her abdomen in order for her to urinate; she could not pass water otherwise. I found that quite distressful, but I soon got used to that.
`... We were encouraged to touch her, to handle her, I think they thought it would both involve us and help her. We gave her her feeds through a tube.
`... once I had overcome my initial reluctance to do that, I was very grateful. I wanted to be looking after my daughter, and so did my wife.
`... I wanted to be involved. I was glad I was involved. They did not pressurise us to do it, they said, "Would you like to?" ... It was encouraged. It was two or three days before I felt happy to do it and I thought they were very sensitive about it at all.' [391]
`I felt there was tremendous continuity in the nurses because they work 8-hour shifts ... and so they got to know us and they got to know their patients, the children who were in there, they treated them as human beings. I found the doctors, they would come round perhaps on a 10-minute ward round twice a day and I always had the impression that they did not see the children, the babies, as human beings, more just as anatomical problems that had to be solved. For example at one stage Josie's weight ballooned enormously, she went up over 3 kilograms and then came down, she lost almost 50 per cent of her body weight in 24 hours at one point simply because she had been too heavy before, I do not know, there was a problem controlling her fluid. They talked about it as a chemical imbalance problem.' [392]
334 Penelope Plackett described encounters which she had with nurses at the BRHSC:
`When I returned to the BRI, I was told Sophie was being moved to Bristol Children's Hospital. I was very unhappy about this. At the cardiac catheterisation and biopsy at the Children's Hospital, the staff on the baby unit were uncaring. They seemed to spend their days drinking tea and chatting to one another, emerging every 4 hours to feed the babies. The transfer to the Children's Hospital went ahead. I only saw the nurses when they came with Sophie's drugs, and her care was left entirely to me. She was being bottle fed but I could not get her to suck or swallow. I asked for help with her feeding over and over again, but nobody came to my assistance. I later found out that the problem resulted from Sophie pressing her tongue against the roof of her mouth. A simple instruction from one of the nurses would have enabled me to deal with this. I felt I had no support at all. Babies were crying all the time but no one seemed bothered to check that they were all right. On many occasions, Sophie's drugs chart was not signed, and, when I questioned this, I was told that agency nurses were not allowed to sign. If this was right, I could not understand why they were allowed to give out drugs. Sophie was never given the Nystan she was supposed to receive. I remember this period as nightmarish. The care seemed slapdash and entirely unsatisfactory. Sophie screamed constantly, and I felt demoralised and very unhappy. In contrast to the nurses at the Children's Hospital, the ITU nurses at the BRI had been fabulous, particularly two called Lou (Louise) and Eunice (who left soon after). They all worked very hard and were very supportive.
`Whilst Sophie was at the Children's Hospital, Mr Dhasmana made occasional visits. He was reticent and said very little to me. On one occasion, he said he had no idea how Sophie had suffered her brain damage. Mr Dhasmana mentioned the possibility of oxygen starvation, and suggested that, in opening the heart, they must have dislodged a "floret". He explained that this was part of an existing valve which must have made its way to the brain. He described the appearance of a valve as being surrounded by "cauliflower florets". I had the distinct impression that they did not know what had happened, or that they did know, but were not going to tell me.' [393]
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Footnotes
[347] WIT 0025 0002 - 0003 Belinda House
[348] WIT 0025 0003 Belinda House
[349] WIT 0025 0006 - 0007 Belinda House
[356] WIT 0417 0008 Amanda Evans
[357] WIT 0417 0011- 0012 Amanda Evans
[359] T3 p.35-6 Malcolm Curnow
[360] T3 p.55-6 Malcolm Curnow
[361] WIT 0263 0013 Diana Hill
[362] T3 p.143 Michelle Cummings
[363] T3 p.147-9 Michelle Cummings
[364] T3 p.151-2 Michelle Cummings. The UBHT responded to this evidence at WIT 0123 0060
[366] WIT 0155 0009 John Mallone
[367] WIT 0155 0055 (emphasis in original)
[370] T5 p.142 Susan Darbyshire
[371] This, as they later found out, was Helen Stratton
[372] T5 p.142-5 Susan Darbyshire
[373] T5 p.146 Susan Darbyshire
[374] T5 p.147-8 Susan Darbyshire
[375] T5 p.148-9 Susan Darbyshire
[376] T5 p.151-2 Susan Darbyshire
[377] T5 p.152 Susan Darbyshire
[378] WIT 0125 0015 Susan and Kenneth Darbyshire
[379] T5 p.153 Susan Darbyshire
[380] T5 p.156-9 Susan Darbyshire
[381] T5 p.159 Susan Darbyshire
[382] T5 p.165-6 Susan Darbyshire
[383] T5 p.166 Susan Darbyshire
[384] T95 p.85 Justine Eastwood
[385] WIT 0022 0010 and WIT 0022 0056 Justine Eastwood
[386] WIT 0022 0091 Justine Eastwood
[387] WIT 0022 0013 Justine Eastwood
[389] T95 p.165-8 Philippa Shipley
[390] T95 p.170-2 Marie Edwards
[391] T95 p.172-4 John Mallone
[393] WIT 0012 0010 Penelope Plackett