Annex A > Chapter 17 - Communication Between Healthcare Professionals and Patients > Calculating risks and informing parents about them > Counsellors
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Counsellors
Reverend Robert Yeomans
120 In his written evidence to the Inquiry, the Reverend Robert Yeomans, advisor to the UBHT in spiritual and religious matters from 1993, stated that:
`I felt on those few occasions when I sat in with surgeons' discussions with parents that they stressed the seriousness of what was happening and did not gloss over it. I recall risks being discussed. They were discussed in the form of percentages. I cannot recall anything about the figures. The information was given with sensitivity. I recall the use of diagrams and sometimes parents would show me these. I usually felt that parents were told as much as they could know and understand. Some parents were unable to cope with the explanations because of other practical pressures, being emotionally drained, or a deep wish to have things "put right" without needing to understand. Some people took in every word and talked it over. Some people seemed to understand but could seemingly recall nothing. None of this is particular to cardiac parents but these are aspects of human nature. Sometimes the parents wanted clarification, or perhaps wanted something repeated, and I would try to give them the courage to go back to ask for further information, which they usually did.' [144]
Mrs Vegoda and Miss Stratton
121 In his written evidence to the Inquiry, Dr Joffe stated:
`During the early 1980s, it became apparent that, after the detailed initial discussion with parents at the time of diagnosis about the implications of the child's condition, and the plan of action to be followed, Dr Jordan and I found it increasingly difficult to spend sufficient time with parents to allay their anxieties. This was aggravated by the paucity of junior medical support in the BCH and the demands of the many peripheral clinics. Consequently, I approached Mrs Jean Pratten, Secretary of the Bristol and South West Children's Heart Circle, to seek financial support for a post of Counsellor in Paediatric Cardiology, who could act as a liaison between the cardiologists and parents. The Heart Circle decided to back this initiative and Mrs Helen Vegoda was appointed in late 1987 to one of the first such posts in the UK. She commenced duties in January 1988. A few years later because of parents' concerns about surgery and the split site, there was a need in the BRI ITU for a similar post but with a medical background. The Heart Circle also supported this post and Ms Helen Stratton was appointed in about 1991.' [145]
122 Dr Joffe stated further that both Helen Vegoda and Helen Stratton were involved in providing bereavement support. Bereavement support was developed in the BRHSC by Helen Vegoda who established a regular monthly meeting for those parents who wished to receive ongoing support. [146]
123 Mrs Helen Vegoda described her role:
`I understood it was quite a complex role, because it involved the emotional and psychological support and counselling to families. It involved giving information - ... not medical information but other supportive information. It involved being there as a very general support at times of stress. It involved what I would have called "orientation", helping parents to know what facilities were around in the Children's Hospital in Bristol. It had a liaison element to it in terms of the community, and there were certainly other aspects, but I think at that time those were probably, possibly, the main ones.' [147]
124 Mrs Vegoda explained what she did by way of counselling and providing support:
`... I think there is a continuum from counselling through to support, and it does not stop at a particular point.
`What I was very careful not to do was to, what I would say, counsel in terms of medical information because I did not have that background. The counselling that I gave, the emotional support I would give, was, for example, there were certain particularly key points for parents that were emotionally extremely stressful and, for example, the diagnosis or a child going for a catheterisation or surgery, or at other points like that, and quite a bit of my counselling and support would be to try and be around at those key points and to give parents space to allow them, or maybe facilitate their emotional response at those times, to be there to listen to them.' [148]
125 In her written evidence to the Inquiry, she stated:
`I became involved with the children and their families when they were admitted to the hospitals ... I provided emotional and other support at key times during the child's admission, for example, being available to parents accompanying the child to theatre or the catheter lab and supporting them whilst they awaited the child's return. Some of my support was to liaise with parents' employers to obtain leave of absence, give information about voluntary organisations such as the Heart Circle and the Downs [sic] Heart Group, and help make preparations for discharge by contacting other agencies, e.g. Social Services, GPs and Health Visitors. Having attempted to establish a working relationship with the families, my involvement with them varied from very intense to minimal, depending on the needs of the family.' [149]
126 Mrs Vegoda stated that occasionally she sat in with cardiologists and surgeons when a diagnosis was made or when details of surgery were given to parents. [150]
127 She told the Inquiry how she decided which occasions it was appropriate for her to sit in with parents at the discussions with clinicians:
`What I did was, I made a point of going down to the outpatients clinics at the BCH, and I think they were on Wednesdays. That would be when the pre-operative discussion took place with the parents.
`The nursing staff knew that I went down, and what would happen was that either I met there parents whom I had met previously, who I knew were going to be there ... and I knew that they were going to talk to the surgeons, so that I might have prearranged to accompany them, if that is what they wanted. So that was one set of parents.
`Others, the nursing staff might have involved me and actually said to me, "There is a family in this afternoon who are going to be talking to one of the surgeons; it is quite a complex operation, I am just telling you that." If I did not know that family, I might go and introduce myself and offer to be around. But it was the parents' choice. If they did not wish me to be there, and obviously I cleared this with the surgeons and the cardiologists, then I would not sit in.' [151]
`... I would usually try to ascertain whether a parent understood what any treatment or surgery entailed following the meeting with the cardiologists or surgeons. If it was apparent that a parent needed clarification of the information, I would ask the consultant/Registrar or one of the nurses to meet with the parents again to explain the procedures. I would never explain the medical aspect of any procedure to a parent, as I was not qualified to do so. I could provide the details of the process and place of treatment only... If parents were still concerned about procedures I would encourage them to go back to the cardiologist or arrange a meeting for them.' [152]
129 Mrs Vegoda told the Inquiry how she was able to judge whether parents had properly understood the details of what the clinicians had told them:
`... it is a combination of what I heard myself, and as time went on, I became more familiar with some of the language that was used, and also, very much checking out with parents. I mean, if, for example, I was ever there when there was a diagnosis or surgery was explained or a procedure was explained, I did always ask the parents, or I hope I always asked the parents, you know, "Did you understand what was being said? Is there anything you are confused about or you want to go back over, or you want repeated?"
`To an extent, because I did not have the background of everything myself, I suppose there might have been instances where the parents said they did understand and possibly they did not. But I think with time, possibly I was getting more information as well.' [153]
130 Mrs Vegoda described her role in bereavement counselling:
`Part of my role included emotional support, counselling and practical help to parents at the time of, or following a child's death. My contact with bereaved parents was open ended, and in some instances continued for several years.
`At the time of death my support could include staying with the parents until they were ready to go home, accompanying the parents to register the child's death, meeting them if they returned to the hospital to see their child in the Chapel, and liaise with and be present at meetings with the Surgeon or Cardiologist ...
`I sent out regular cards to parents on the anniversary of their child's death and birth and instigated and organised an annual Remembrance Service for Cardiac families for three years ...' [154]
131 Miss Stratton described her role in her written evidence to the Inquiry:
`My understanding of the role was to bring together the BCH paediatric/cardiac activities with those of the BRI. The aim was to ensure the smooth transition for parents and children from the BCH to the BRI. This would include corresponding with the child's health visitor and/or GP. I also had to ensure that parents had accommodation and had practical information on the child's admission to the BRI and their forthcoming stay. This would include advice on transport and the envisaged length of stay... I would work in a very practical way with the parents ... My understanding was that I was there to support the parents so that when the child was in surgery or in intensive care the liaison nurse could spend time explaining for example why the child was on a ventilator and what the lines were for, and the reason for sedation. The nurses caring for the child often did not have the time to spend with the parents and explain at length what was happening.' [155]
132 Miss Stratton explained how she approached parents:
`At the beginning of every month I would get a theatre list with all the adult and children's names on it along with the referring GP. I would write to the parents and introduce myself and say that they may have met Helen Vegoda at the BCH and that my role was to provide support and care while they were at the BRI, in conjunction with Helen Vegoda ... I also rang the Health Visitor to notify her of the admission and to let her have my number. Sometimes the Health Visitor would inform me of any social aspects of the family that I would relay to Sarah Appleton the social worker.' [156]
`I had come across a book at GOS called "Heart Children"... which had concise and easy to understand explanations of the commonest cardiac conditions with diagrams. It was written for parents and it was very good. They were not cheap so I had a master copy to show to the parents and if they wanted to buy a copy I would sell them one and give the money back to the Heart Circle.' [157]
134 As regards bereavement, she stated:
`Where a child died, I would notify the health visitor and would tell them how the parents had reacted and their plans for returning home. This then allowed the Health Visitor to go and see them. I would tell the Health Visitor as much as I was able to so that the Health Visitor could meet the parents and already have an idea of what had happened while the parents and the baby were at the BRI.' [158]
135 She told the Inquiry that:
`... I kept a red book with patients' names and addresses, the name of the health visitor, how often I had spoken to the health visitor, the name of the GP and other information like whether I had referred the family to the Social Worker. It was really a record that I could see: had I contacted the health visitor, when did I last contact them, had the parents received any support from the social worker and had they received any financial support from the Heart Circle ...
`It had the date of the operation, the date the child was extubated and taken off the ventilator, the date they were moved through to the nursery, the date that they went home and the date they died ...' [159]
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Footnotes
[144] WIT 0274 0016 Reverend Yeomans
[145] WIT 0097 0014 Dr Joffe
[146] WIT 0097 0014 - 0015 Dr Joffe
[149] WIT 0192 0002 - 0003 Mrs Vegoda
[150] WIT 0192 0003 Mrs Vegoda
[151] T47 p.149-150 Mrs Vegoda
[152] WIT 0192 0003 Mrs Vegoda
[154] WIT 0192 0005 - 0006 Mrs Vegoda
[155] WIT 0256 0002 Miss Stratton
[156] WIT 0256 0008 Miss Stratton
[157] WIT 0256 0007 Miss Stratton
[158] WIT 0256 0008 Miss Stratton