Annex A > Chapter 11 - Referrals > Referrals to Bristol - information available to referring clinicians about standards at Bristol or elsewhere and factors influencing referral patterns > Evidence of influences on referral patterns

Evidence of influences on referral patterns

Relationships with the cardiologists

61 Many (29) of the referring paediatricians stressed that they referred patients to the Bristol cardiologists, and not to the surgeons.

62 Dr Trefor Jones said:

`I think it is important to realise that general paediatricians in district general hospitals require first and foremost, a service of a paediatric cardiologist, not a paediatric cardiac surgeon.' [70]

63 Dr P Edwards stated:

`The principal linkage for a general paediatrician such as myself in respect of paediatric cardiology services is the Consultant Paediatric Cardiologist, and not the Surgeon. I was, and remain, extremely pleased at the level of service that Dr Martin provided.' [71]

64 Thus, the relationship between referring clinicians and the cardiologists at the BRHSC, and the regard in which the cardiologists were held, would appear to have been an important factor influencing referral patterns to Bristol. These links were forged, and strengthened, by the holding of outreach clinics.

65 Dr J Morgan's [72] evidence was typical: the key referral factor for him was the working relationship that he had with the Bristol cardiologist who held a local outreach clinic.

66 The Inquiry received evidence that once the paediatrician had made a referral to a cardiologist, the paediatrician would expect any subsequent referral to a surgeon to be a matter for the cardiologist.

67 An example of this was the evidence of Dr S Ferguson: [73]

`... the referral for surgery was very much from the Cardiologist and not directly from myself as a general paediatrician. My role was to try and detect heart problems and then ask for a cardiology opinion from Dr Jordan who I might add was perceived here in Newport as a hard working, dedicated, senior clinician who was held in high regard by myself and my colleagues here.'

68 Dr S Lenton's [74] evidence was to the effect that, while any reference to a surgeon was a matter for the cardiologist, the referring paediatrician who referred a patient to a Bristol cardiologist would have been almost certain that in practice, if the patient needed surgery, he or she would be referred on, in turn, to a Bristol surgeon. Dr Lenton said:

`Once referred to Bristol for assessment it was automatic that the surgeons would operate in Bristol rather than transferring the child elsewhere.'

69 Commenting on the view expressed by Dr Lenton, Dr Jordan said:

`It is over 99 per cent accurate. ... I/we did refer patients to other centres. I think the commonest reason was when we had doubts about the diagnosis or the problem of diagnosis together with the actual management, and merely wanted a second opinion, if you like, there were some operations at different times, not very many by the time I retired, that were only done in a few centres. For example, replacing the aortic valve by taking the patient's pulmonary valve and using that, and then putting a homograft in the aortic area. I believe that is now done in Bristol, but it was not, I think, done during my time. So that would be an example of a procedure that was known to be done elsewhere and not available in Bristol. I mean, I can continue. I did actually, I think, make a list of these and I think it ran to about ten possibilities. There were other things. There were social reasons, and I suppose the other important group, really, were the parents who were unhappy with the advice that they were given, and said, you know, "Can we go and see someone else and see what they have to say about it?"' [75]

Contracts

70 The use of contracts or service agreements, introduced by the 1991 reforms of the NHS, was not in place in the early years of the Inquiry's Terms of Reference. The Inquiry received evidence that the introduction of contracts did have an influence on referral patterns, by making it more difficult for a clinician to refer a patient to a centre other than that with which the contract was held. The evidence included the following comments from referring clinicians.

71 Dr M Quinn: [76]

`The Royal Devon and Exeter Healthcare NHS Trust held a contract for paediatric cardiac surgical services with Bristol. This together with the fact that Bristol was the regional centre for cardiac surgical services influenced me to continue to make referrals along this path.'

72 Dr R Orme: [77]

`Contracts did, however, make it significantly more difficult to refer patients to other centres, even if one were so minded. This could only be done through the means of an Extra Contractual Referral for which the Health Authority would have to pay. In practice one would have had to have been able to show that the treatment necessary could not have been provided by the Centre holding the contract.'

Geographical convenience

73 Dr C Vulliamy: [78]

`Strong links had been established with the Paediatric Cardiologists between North Gwent and Bristol. That was geographically convenient and supported by a well-established retrieval service.'

Supra regional status

74 Some referring clinicians mentioned, and appeared to place reliance on, the fact that Bristol was a designated SRC or NICS.

75 Dr Stevens [79] referred to Bristol being:

`... approved by the NHS as a regional [sic] centre for paediatric cardiac surgery'.

Dr Stevens also made the point that `no reservations' were expressed either by the SWRHA or the NHS Executive about the standard of paediatric cardiac surgery at Bristol.

Established pattern

76 A theme which recurred in the referring clinicians' correspondence was that they tended, upon taking up a consultant's post, to find that a link between their centre and a cardiologist at a particular unit was already established, such that thereafter they themselves followed the pattern of referral already in place.

77 Dr D Challacombe [80] was typical:

`By tradition, children needing cardiac surgery or investigation from West Somerset were referred to cardiologists from Bristol, while those from East Somerset went to Southampton. I continued this tradition in West Somerset as I had no reason to be dissatisfied by the service given to my patients.'

78 Dr S Maguire: [81]

`When I came into post in 1991 there was a well established outreach cardiac clinic from Bristol. My clinical colleagues were very satisfied with the service we received and I was also happy therefore we maintained the referrals.'

79 Sometimes clinicians on taking up a new post continued a referral pattern to a particular centre that they themselves had previously developed links with. For example, Dr L Smith [82] told the Inquiry that he saw few children with cardiac problems, but those whom he did see he `almost exclusively referred to the Brompton Hospital where I had an extensive historical association and knew the service to be of high quality'.

Down's syndrome

80 The Inquiry received evidence from both parents and clinicians that the Bristol centre was regarded as more prepared than at least some other centres to operate on children with Down's syndrome.

81 Dr A Salisbury [83] told the Inquiry that he felt that the Bristol team were `very sympathetic' to the assessment and surgical treatment of children with Down's syndrome. As a result he referred practically all such cases to Bristol, whereas in general his referrals were split between Bristol and Oxford.

82 Sheila Forsythe, whose son Andrew has Down's syndrome, said:

`We actually felt that we were extremely lucky, in that we lived virtually on the hospital doorstep of a regional cardiac centre and we had absolutely no doubts and trusted Dr Joffe and trusted Mr Wisheart implicitly. We did not even think to question where we were being referred to. ... I had had contact with a lady who subsequently did actually set up the Down's Heart Group who knew a very global picture of Down's syndrome. She was asking the question, should she or should she not have surgery for her child. She had asked the question in the Down's Syndrome Association national newsletter and had a very wide variety of input from parents. Some was very, very positive and some was very, very negative. Also, at the time, she obviously had contact with families who were not having surgery because they had not been referred by the cardiologists so presumably their children were within the optimum surgical - there was an ability to offer surgery for them, but it was because of the discrimination of the cardiologists in those - there were two centres that we knew of, that children with Down's syndrome were not being referred. So with that, for a quick afternoon, to sort of go out and find out all this, we then had no qualms about having surgery for Andrew.

`Q. So the picture that you were given was that in some parts of the country Andrew would not have had the offer of surgery?

`A. That is right.

`Q. That was the information that you had, that he was being given in Bristol?

`A. That is right.

`Q. The reason he might not have been offered elsewhere appeared from the enquiries you were making to be because he was a Down's syndrome child?

`A. That is right.

`Q. Was there any sense of hesitation at all in Bristol in offering an operation?

`A. Absolutely not.

`Q. Was there any sense, to you, that the Bristol unit treated Down's syndrome children in any different way than they might treat other children?

`A. Absolutely not.' [84]

The split service/site

83 A number of referring clinicians (six) were aware of some shortcomings at Bristol, related to the split service/site at Bristol. Dr T Perham [85] said:

`... my impression ... is of a somewhat disjointed service which particularly seemed to be the result of problems related to a split site delivery.'

84 Professor J Osborne: [86]

`I knew they were operating under difficult circumstances on a split site.'

85 Dr Vulliamy: [87]

`I had held the Paediatric Cardiac Surgical Services in Bristol in high regard though I was aware there had been limitations on the type of procedure that would be undertaken. The separation between the BCH and BRI seemed to present some practical difficulties.'

Waiting lists

86 Other referring paediatricians (14) pointed out that referrals would be made to other centres if there was no bed available at Bristol. [88]

87 One, Dr T French, [89] was critical of the waiting list at Bristol:

`My only reservation about the paediatric cardiac surgery for children in Bristol was the timeliness of operations for elective, non-emergency treatment. Parents, children and others were disappointed when planned arrangements had to be deferred because of lack of surgical time.'

88 However, Dr A Griffiths told the Inquiry that patients referred to Bristol `had their surgery within a very acceptable timescale'. [90]

89 Dr P Rowlandson [91] pointed out that delays were not peculiar to Bristol. He explained that, from Swindon, patients were referred to either Bristol or Oxford:

`... when Oxford had appointed a paediatric cardiac surgeon the choice was still Bristol for many patients because of lack of beds in Oxford. Bristol too often had a problem finding a bed. The whole service seemed chronically under resourced.'

90 Dr Quinn [92] told the Inquiry:

`Children were occasionally referred to centres ... to Birmingham and Southampton but only because Bristol was unable to look after them.'

Awareness of standards at Bristol

91 Few of the referring paediatricians told the Inquiry that they knew or had heard anything adverse about standards of care at Bristol.

92 Most referring paediatricians told the Inquiry that their impression was that services at the BRI were satisfactory and that they had no concerns regarding the treatment offered there, except for the comments on the split site, referred to earlier. As noted above, many referring paediatricians formed their impressions without the benefit of hard data about Bristol's relative or absolute performance.

93 Dr J Tyrrell: [93]

`I have always felt that we have had an excellent service from the paediatric cardiologists, particularly Dr Joffe ... He is an exceptionally kind man who is very skilful and explains problems in details to the patients.'

94 Dr Trefor Jones: [94]

`My experience of the Unit at Bristol has always been satisfactory and the children whom I have had under my care, from the years 1984-1995, who underwent paediatric cardiac surgery there have done well.'

95 Dr P Rudd: [95]

`It was my impression that the paediatric cardiac surgical service between 1986 and 1995 was of high quality.'

Concerns about standards at Bristol

96 The evidence of seven referring clinicians suggests some were aware of concerns about Bristol, albeit not supported by hard data.

97 Dr R Verrier Jones [96] dated his awareness of such concerns to `the end of the 80s'. He said that by then `... there were some adverse comments being expressed about Bristol but it was only hearsay'.

98 Dr J Tripp: [97]

`I did raise with my own colleagues and with the Trust Executive the possibility that we should consider transferring the contract from the BRI to Southampton. This was based partly on concerns about surgical results, even though these were based on hearsay rather than on data and partly on the costs which appear to be more favourable at Southampton.'

99 Dr W Forbes: [98]

`I knew that Mr Dhasmana had unsuccessfully attempted several switch operations for transposition but not on any of my patients.'

100 Dr G Taylor [99] was one of the few paediatricians to tell the Inquiry that he was aware of rumours in the early 1990s that, as he put it, `all was not well at Bristol'. He told the Inquiry that he could not recollect the precise source of the rumour, but that it was significant enough for him to discuss with Dr Jordan. Dr Taylor said that he `received reassurance [i.e. from Dr Jordan] that the situation was under review and that there was no cause for concern'.

101 Dr Jordan was asked about Dr Taylor's evidence. Dr Jordan said:

`We used to have sort of what one might call general discussions and I cannot recall Dr Taylor standing out from other paediatricians that I did clinics with as particularly pursuing any sort of discussion of this sort. ... All I can say is that we did discuss very generally not only our plans but also our results and to some extent the discussion included a "warts and all" approach to it so it may well be I had actually, you know, talked about things that were of concern to us as well ... for example that we still had not, right up to the time that I retired, got the cardiac surgery moved up the road. That is of particular importance to paediatricians because paediatricians are really very keen on the idea that children should be looked after in a paediatric environment.' [100]

102 Asked whether such a `warts and all' discussion with paediatricians would have included discussion of particular procedures being carried out at Bristol, Dr Jordan said:

`I think it would only be if I was specifically asked. Bear in mind that if we are dealing with transposition with intact intraventricular septum ... paediatricians ... would see one case in every five years or something like that. I do not think it is reasonable to suppose that Dr Taylor specifically had a problem over his patients or indeed from any information that he would have got from what I might call reliable sources. ... I think it would be very difficult for a paediatrician to form a view on his own about, for example, what our success rate was in neonatal Arterial Switch operation.' [101]

103 In the light of the evidence of Dr Phillip Hammond [102] in particular, the evidence from Bath paediatricians is of interest.

104 Dr Hammond suggested that unnamed doctors in Bath were aware of the `problems' at Bristol before they reached public attention. He told the Inquiry:

`From sources within the Trust I was told ... that the problem was now so grave (in 1992) that I should attempt to alter the referral pattern of the GPs I knew for children with complex heart conditions such that Bristol would be bypassed. This apparently already happened with areas/referring doctors "in the know".' [103]

105 He also told the Inquiry that, following evidence given to the Inquiry by Miss Catherine Hawkins, `Private Eye' had been contacted by consultants at Bath Royal United Hospital:

`I have since been sent information to "Private Eye" anonymously that some of the doctors in Bath did try to raise concerns with Region about the Bristol service, possibly before 1992 ...' [104]

106 The Inquiry heard from six paediatricians in Bath. [105] Dr Lenton, who was in Bath throughout the period, told the Inquiry:

`I was only aware that there might be a problem with the cardiac services offered in Bristol due to indirect feedback via SHOs [senior house officers] and specialist registrars who had previously worked in UBHT.'

However, Dr Lenton did not suggest that he had any direct evidence of poor standards at Bristol and told the Inquiry that he `had assumed that the ... service ... was about average'. The only other `concerns' expressed were by Professor Osborne, who was in Bath throughout the period, and Dr Tyrrell who was in Bath from 1992. Both told the Inquiry that they were aware that Bristol had a split site.

107 All six Bath paediatricians confirmed that they referred children to Bristol during the period. Dr Hutchinson, who had been working in Bath from 1991, told the Inquiry that he had `no inkling of any problems ... At no time did I have any reason to be other than fully confident in the surgery services'. [106] Dr Cain, who had been a consultant paediatrician at Bath from 1973, said that he `had nothing but praise for the service' and had `no reason to refer children other than to Bristol'. [107] Dr Rudd, who was in Bath from 1986, said his impression was that the service at Bristol `was of high quality ... because we had no concerns about the quality of care being provided in Bristol, this centre seemed to be the obvious choice'. [108]

108 The Bath clinicians also stressed the importance of their relationships with the Bristol cardiologists.

109 Professor Osborne stated:

`I think it is important for background information, to know that I held and hold Dr Joffe in the highest possible esteem as a clinician and as a paediatrician. He is one of the kindest and most compassionate people I know.' [109]

110 Dr Rudd:

`I had close contact with ... Dr Joffe. I was impressed with the very high quality of care that he was able to offer.' [110]

111 Dr Tyrrell:

`I have always felt that we have had an excellent service from the paediatric cardiologists, particularly Dr Joffe. ... He is an exceptionally kind man who is very skilfull and explains problems in detail to the patients.' [111]

Information provided to parents/choice of treatment centres

112 Mr Wisheart said:

`With regard to the general public there really was no significant channel of communication. Individual patients and their families gained detailed and precise information in the pre-operative discussions with their surgeons and cardiologists. The patient information unit of the Trust made an important contribution to the provision of information to patients, but I do not believe that it made information available about the standards of treatment attained at the BRI. Talks were given to bodies such as the Bristol and South West Children's Heart Circle and occasionally talks were given at the health centres.' [112]

113 Dr N Agarwal [113] told the Inquiry that:

`Parents were always offered the choice, consequently some children were sent to other centres but most accepted the advice and were sent to Bristol.'

114 Eileen Martyr, whose son, Aaron, was referred to Bristol from Treliske Hospital, explained that shortly after his birth she was told that her `son would be transferred to a hospital in Bristol ... There was no suggestion of Aaron going anywhere other than Bristol'. She told the Inquiry of conversations with clinicians in Treliske:

`At some stage after our meeting with Mr Wisheart, Dr Taylor made a passing comment that, if Aaron was being treated at Great Ormond Street Hospital, the operation would have been done almost straight away. That stuck in both our minds. We later asked Dr Eades whether she thought it would be a good idea if we paid for the operation privately, and then it would be done straight away. She told us that Mr Wisheart was "the best surgeon in Britain" and that to have the operation done privately would be a waste of money.' [114]

115 One mother whose child was transferred to Bristol from Gloucestershire Royal Hospital, said:

`The possibility of [my child] being dealt with anywhere other than Bristol and by Bristol surgeons was not, at any time, discussed; neither was I concerned about that because I had confidence in Dr Martin and subsequently Dr Dhasmana who would do the operation on [my child] . I believe [my child] was too ill to be moved anyway.' [115]

116 Penelope Plackett, mother of Sophie, said:

`I saw Dr Orme in outpatients at the Royal Devon and Exeter Hospital ... He told me of a child from the Exeter area who had undergone the same operation and was now living a normal life. He said the results at Bristol were excellent. Although there were "risks" as with any operation, Sophie would have a normal life if she survived. He told me this several times. He did not quantify the risks or specify what they were.' [116]

117 The Inquiry also received evidence from parents who were offered the choice of more than one centre. For example, Justine Eastwood, mother of Oliver, was told at Cheltenham General Hospital that she had a choice:

`The doctor explained to me that Oliver would have to be transferred to a specialist centre. He explained that the hospitals that specialised in heart problems were in Bristol, Birmingham and Oxford. We were told that Oliver could be transferred to any one of these centres and we opted for Bristol because we felt it would be easier for my parents to come and visit Oliver as they could fly into Bristol airport.' [117]

Her evidence included this exchange:

`A. When we were in Cheltenham, because we were in a central position, we had a choice between Birmingham, Oxford or Bristol. We chose Bristol for personal reasons, because the family were travelling over from the Channel Islands, but we were given the choice.

`Q. Was anything said to you about why you might prefer one place to other?

`A. No, never.

`Q. So a choice, but no guidance?

`A. No, not at all. I think more choice for travelling. I think that was the reason. We were travelling from Cheltenham, but it certainly was not because one place was better than another. That was definitely never mentioned to us.' [118]

She was asked:

`Q. Do you think you would have reacted well in the 1990s to have been told, "Well, it is Bristol we are sending you to"? Would you have asked, "Well, why there, why not -"

`A. There would have been no reason to. As far as we were concerned if we were being sent to a specialised centre, there was no reason to doubt where we were going, or why we were going. All we wanted to do was to get our child to a place where they were going to try to help us. We did not ask those sort of questions.' [119]

118 A parent told the Inquiry that she was offered a choice of centres in theory, but not in practice. She said:

`At Gloucester Royal I was told that no treatment could be carried out there and given the choice of going to the Bristol Royal Infirmary or the John Radcliffe Hospital. John Radcliffe, however, had no beds.' [120]

119 Another parent said:

`I was told that the Morriston Hospital always transferred its cardiac cases to the London Hospitals, but [the child's] condition was so grave that [the child] was rushed to the Bristol Children's Hospital ... We were told that the BCH was a centre of excellence and we were happy with [the child] being taken there.' [121]

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