Final Report > Chapter 17: Parents' Experiences > Facilities and support available to parents
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Facilities and support available to parents
10 We turn now to the facilities available to parents as they waited for their child to recover. Parents were able to stay at the BRI overnight. Although the arrangements were somewhat less than ideal, they do appear to be comparable with those of other hospitals. Parents were also shown the Intensive Care Unit (ICU) so as to prepare them for when they visited their child after surgery. The great majority of parents found this helpful, although some were distressed at realising that adults were also cared for in the same ICU.
11 As for support, the Directorate of Surgery at the BRI stated in its document `Services for Patients' that counselling of patients and their relatives before and after surgery is a priority. [14] We heard, however, that actions did not always match the words. The view was expressed that funds often only became available to the paediatric cardiac surgical (PCS) service at the BRI in response to a crisis, and that the funding by the hospital of support and counselling was seen as inadequate, reflecting its being given an extremely low priority. [15] By contrast, some stated that, whatever funding difficulties existed, counselling was given a high priority in respect of the training given to nursing staff to enable them to support and counsel the families who were in their care. [16]
12 Mrs Jean Pratten, founder of the Bristol & South West Children's Heart Circle, stated that a lack of support and co-ordination by management often hindered and complicated the support that the Heart Circle was able to make available. [17] Furthermore, the cardiac surgeons took the view that the development of the medical service, was a better use of resources than meeting the emotional and psychological needs of families. [18]
13 Some parents who gave evidence to the Inquiry told us that they were given support and counselling. Others felt that they had received none. Some went so far as to describe their experience as appalling, [19] and as giving the impression the staff were covering up for some mistake. [20]
14 Some parents also gave evidence that they were offered no counselling at all after the death of their child, [21] and some that they were not even offered a cup of tea or coffee. [22] The UBHT conceded in its evidence to us that the service was insufficient to meet the needs of some parents. [23]
15 In 1993 a survey [24] conducted into the level of information and support being given to families attending for catheterisation at the BRHSC [25] found that, at the time of initial diagnosis, 45% responded that they did get support from the hospital, 53% said that they did not, and of those who did not get support, 25% said they would have liked to receive it. Thus, at that time, the majority of parents were still not gaining access to, or were unaware of, the support that could be obtained at the BRHSC.
16 As with all other matters, there were mixed views about the support services that were available. Mrs Helen Vegoda, Counsellor in Paediatric Cardiology 1988-1996, and Miss Helen Stratton, Cardiac Liaison Nurse 1990-1994, each attracted both praise and criticism. That said, there was ample evidence of a degree of confusion as to the respective roles of the two of them, and the consequent uncertainty it created in the parents. As David Charlton, father of Hannah, put it: `We felt we were into "territory issues" between them'. [26] There were clear issues of `territory' between Mrs Vegoda and Miss Stratton. We heard evidence, for example, of Miss Stratton being made to feel unwelcome when she visited parents at the BRHSC, and of Mrs Vegoda being told that it was inappropriate for her to visit a family on Ward 5 at the BRI. [27] It is not clear whether these difficulties affected the care of patients. [28]
17 Discussions were held in an attempt to resolve the problems. A division of their areas of responsibility was agreed, but it did little to help the working relationship between them. [29] The corrosive turf war between Miss Stratton and Mrs Vegoda was never adequately addressed by management and seriously undermined the service which both were able to deliver.
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Footnotes
[14] HAA 0097 0009 `Services for Patients', July 1991
[15] WIT 0269 0011 Mrs Pratten; WIT 0534 0005, 0007 Dr Gardner
[16] WIT 0180 0037 Ms Hale; WIT 0150 0043 Miss Gerrish
[17] WIT 0269 0011 - 0012 Mrs Pratten
[18] WIT 0120 0238 Mr Wisheart; WIT 0084 0104 Mr Dhasmana; T47 p.169 Mrs Vegoda
[19] WIT 0260 0004 Erica Pottage, mother of Thomas
[20] WIT 0291 0015 Antonio Chiarito, father of Maria
[21] WIT 0229 0020 Paul Bradley, father of Bethan; WIT 0016 0014 Jean Sullivan, mother of Lee
[22] WIT 0458 0013 Rosemary Walker, mother of Ryan
[23] WIT 0291 0022 UBHT
[24] WIT 0192 0065 Mrs Vegoda
[25] WIT 0192 0072 Mrs Vegoda
[26] WIT 0539 0008 David Charlton
[27] WIT 0256 0004 Miss Stratton; WIT 0192 0248 and WIT 0192 0250 Mrs Vegoda's note, `Areas of Concern'
[28] WIT 0269 0005 Mrs Pratten