Annex A > Chapter 11 - Referrals > Referrals to Bristol - information available to referring clinicians about standards at Bristol or elsewhere and factors influencing referral patterns > Sources of information available to referring clinicians
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Sources of information available to referring clinicians
32 The Bristol surgeons and cardiologists explained the information that was available to referring clinicians, on which they might base a decision to refer a child to a particular unit. In particular, they addressed whether the Annual Reports of the Paediatric Cardiology and Cardiac Surgery Unit at Bristol would have been sent or made available to referring clinicians.
`... information about individual cases was conveyed to the referring clinicians by comprehensive case summaries and by discussions at the peripheral clinics. A copy of the summaries was also sent to the GPs. I believe the [Bristol's] Annual Reports from 1987 to 1990 were circulated to the referring paediatricians from our department. In addition, the paediatric cardiologists took the opportunity to show the facilities at BCH ... to various consultant paediatricians during the South West Paediatric Club meetings, held in Bristol on one of the two meetings each year, or on any other occasion.' [40]
34 Dr Joffe was asked to whom the Annual Reports would have been sent. His evidence included this exchange:
`The idea was to send the reports to the then District Health Authority, both the local one and peripheral centres, particularly to the ... paediatricians around the region with whom we were related, so to say, by virtue of the peripheral clinics that we held at these various centres and we wanted them to have a view of what we were doing and of our figures and our enterprises.
`Q. You say the idea was to send the reports to the then District Health Authority, both the local ones and the peripheral centres. That was what you described as the idea; was it also the reality or not?
`Q. Do you know whether they went to individual paediatricians who might refer cases to Bristol?
`A. I believe so. I really cannot recall exactly how the mechanism worked, but I believe my secretary or a secretary within the cardiology department would have been asked to send these reports to ... the referring paediatricians.' [41]
35 However, Dr Joffe also stated in his written statement:
`As far as I understand the situation, there was no formal structure or requirement for the BRI and the BCH to convey information on the standards of treatment and care in their various departments to referring clinicians or to members of the public. I believe this was the case throughout the NHS and applied to services under the management of the B&WDHA during the 1980s and to UBHT in the early 1990s. This was also true for most, if not all, designated paediatric cardiac centres in the country.' [42]
He added that the Annual Report for 1989/90:
`... included results for open and closed heart surgery for children over and under one year of age, and a comparison of the mortality rates in Bristol with the average UK results. As far as I am aware, Bristol was one of the first supra regional centres to make such comparisons available to clinicians, on a wide enough basis to put them virtually into the "public" domain. Unfortunately, these annual reports ceased when I became more heavily committed as Clinical Director of Children's Services from early 1991.' [43]
36 Dr Jordan also commented on the information available to referring clinicians. He said that Mr Wisheart personally provided him with information about the surgeons' results, for the purposes of preparing his Annual Report on paediatric cardiology to the management of the Children's Hospital. [44] But, he said:
`There was no consistent publishing of results either from Bristol or from the country in general. Paediatricians did receive feedback from parents, but this was likely more to refer to the general care they received than the actual overall comparisons of surgical results.' [45]
37 In his oral evidence, Dr Jordan said that referring paediatricians would probably not have known that there was an Annual Report produced and therefore would not have requested a copy. [46] His evidence was that the Annual Report was first produced in 1987, but that it was essentially for `internal consumption' at the BRHSC and that whilst the 1987 report was disseminated more widely outside the hospital as `a bit of advertising', later reports were not sent out. [47] This is in contradistinction to the evidence of Dr Joffe, referred to above.
`I would have felt able, if someone said, "Can you give me a rough breakdown of how you stand in relation to the whole of the UK?" I would have been quite happy - and I may well have done this - to say "According to the figures that are actually reported to the UK register. I think, as you know, it is not actually comprehensive, there are a number of units that did not supply their data, but if you want to know how we stand, the answer is - the worst side of it is our mortality for open-heart surgery under the age of one year was higher than the national average and the figures, whatever they are, the totals over a year were similar and the totals for closed-heart surgery were rather better." I would not have had any objection or any difficulty in making that sort of statement if I had been asked "How do we stand as far as figures are concerned?"' [48]
In answer to a question from the Inquiry Chairman, Dr Jordan elaborated further on the point:
`Q. If an observer having heard your evidence formed a picture that you were someone who, recognising that there were some problems in Bristol, fought within Bristol to effect change while outside quietly suggested or warned people off; would that observer have any right to hold that view?
`A. There is some truth in it. I will perhaps give you an example: shortly before I retired [49] I had discussions with cardiologists in South Wales, I think this has sort of been obliquely referred to. Basically they were obviously considering whether they should continue to send patients to Bristol and take on a new cardiologist from Bristol, there was going to be a change anyway and they were being offered, in fact being encouraged to use the service in Cardiff instead. The thing I said to all of them, and I used very similar words but not necessarily identical ones were "You have asked my advice and what you are asking is really what is best for our patients. If I thought that the centre in Bristol was absolutely the best centre in the UK and there was no way that anyone else was going to produce comparable or better results, I would say to you, `Do not try an untried unit in Cardiff'. Frankly, I do not think I am in a position to say that to you and therefore you will have to make up your mind whether you want to try a new unit or stick with Bristol." I think that is the sort of, if you like, comment I made which indicated that I was not going to go around blindly saying "Bristol is wonderful, keep on sending your patients there".' [50]
39 Dr Joffe's evidence included this exchange:
`Q. Dr Jordan, in his evidence to us, in describing the 1980s, when he was asked about Bristol and the performance of Bristol, gently, I think, indicated in reply that Bristol was not the very best of cardiac centres. Would you have said the same had you been asked, let us say, by a referring paediatrician in those years?
`A. Yes, if asked, I would have done so, certainly.' [51]
40 Mr Wisheart said that the outreach clinics:
`... enabled good professional relationships to be established between the referring paediatricians and the cardiological team in Bristol. It is my understanding that the referring clinicians were not in receipt of written information about the results of the work in Bristol; I did not send them my annual statistical summary or report and I do not believe that the cardiologists did either ... I think that the most important exchanges of information were informal and took place in the clinics in relation to particular patients. The paediatric cardiologists, and to a much lesser extent myself, also gave talks in various post graduate centres and it would have been usual to present information and statistics on the results of work at such meetings.' [52]
`To the best of my knowledge the publication in January 1996 of the results in Bristol for paediatric cardiac surgery between 1990 and 1995 were quite unprecedented in the UK. This placed into the public arena the detailed discussions of all the paediatric cardiac surgical operations in Bristol in that period with figures from the UKCSR [UK Cardiac Surgical Register] for comparison.' [53]
42 Mr Dhasmana was also asked about the Annual Reports and whom they were intended for. He replied:
`I think the Annual Report was mainly produced by the paediatric cardiology department and the last one I was aware of was up to 1990. ... so they would have circulated it amongst cardiac surgeons, their own colleagues and probably the Trust, and I would like to think to clinics where they were going to in the periphery.' [54]
43 The pattern which emerged from the letters from those referring clinicians who responded to the Inquiry's initial request for information about referral practice was that they had little or no hard evidence of the results at Bristol or elsewhere. Many respondents (26) made the point that they had no data on which to base conclusions about the quality of care at any particular centre, let alone to make proper comparisons with other centres. The written evidence from referring clinicians included the following examples.
44 Dr M Webb: [55]
`The informal sources of information would have been on feedback through patients, and there was no concern being expressed by those patients I did see again. However most patients referred into the cardiology service would then remain within that service for subsequent follow up and I would not necessarily have been aware of significant morbidity, or even mortality, unless patients had continued to be followed up by me for other reasons - patients in this latter category would have been very few in number indeed.'
45 Dr R Trefor Jones: [56]
`With respect to the sources of information available regarding standards of treatment and care, this is a wider issue and in fact, there is no adequate information system available for the standard of care anywhere. ... It is usually by word of mouth by other colleagues that one establishes what standard of care is in other units. There is always an assumption of course, that units such as Great Ormond Street, The Brompton Hospital, Guy's Hospital, Birmingham Children's and Alder Hey in Liverpool all have very high standards.'
46 Dr P Edwards: [57]
`The sources of information available in the years referred to: 1984-1994, were essentially informal, and essentially included our visiting Paediatric Cardiologist and general Paediatric Consultant colleagues, mainly in South Wales, many of whom during this period obtained a service from Bristol.'
47 Dr A Griffiths: [58]
`Bristol have always given us a good service and to the best of my knowledge we have had no problems with the children whom we have referred. We have however been highly dependent on the advice given to us by the Bristol cardiologists.'
48 Two referring clinicians told the Inquiry they were aware of data on outcomes at Bristol. Dr Dewi Evans told the Inquiry:
`I recall a report from Dr Joffe sometime in the mid 1990s regarding results. I think the report was commissioned specifically when concerns had been expressed regarding high mortality rates for certain procedures.' [59]
49 Dr T Perham said that information on standards of care may have been available at the South West Paediatric Club:
`I cannot definitely remember any discussions regarding this item but have some memory of delivery of a paper by the paediatric medical cardiologists from Bristol on the results of their treatment that was delivered to the club some years ago. I have a feeling that it related to the question of early intervention versus late intervention ...' [60]
50 None of the referring clinicians in their initial letters to the Inquiry said that they had seen, or had requested, a copy of an Annual Report from Bristol. However, in light of the uncertain evidence heard by the Inquiry on this point, the 69 referring clinicians that were in post at the relevant time [61] were specifically asked to address whether they had seen or requested a copy of these reports.
51 The Inquiry received replies from 65 referring clinicians. Of those, 64 said, with varying degrees of certainty, that they had not seen the Annual Reports. Some were sure that they had not seen copies, but a number made the point that they were now relying on their memories of events up to 13 years ago.
52 For example Dr Bosley [62] told the Inquiry:
`I have received reports from the Bristol Cardiology Service, but I can only be sure of receiving them in more recent years and feel really very unsure regarding these particular [reports] of over 10 years ago'.
53 Dr R Jones: [63]
`I do have a copy of the Bristol Audit Report for Cardiac Surgery from 1996/1997, which I believe is the first such report that I was ever sent.'
54 Dr A Palit: [64]
`I did not receive at any time the Annual Report for the Department of Paediatric Cardiology/Surgery. Neither did I expect it. Even if I had received these reports, I wouldn't have read them for the following reasons:
`1. Statistics produced from a different set up can be totally misleading.
`2. Apart from Cardiology, I also do the following special clinics with visitors from tertiary centres:- Genetics, Paediatric Surgery, Gastroenterology, Neurology, Nephrology, Respiratory Disorder/Cystic Fibrosis, Endocrinology.
`If I were to read the Annual Reports of each of these specialist departments and try to make any meaningful conclusion out of them, I would be doing no other work at all!'
55 However, Dr P Rudd [65] said:
`I believe that I have seen at least one of these reports. I remember hearing a presentation at the Southwest Paediatric Club given by Dr Jordan during this period in which he discussed the annual report and the results of paediatric surgery. I think that this was probably in 1986 or 1987/88. I seem to remember that the report was circulated at that meeting. I believe that more than one report was circulated to me at my hospital address but I cannot be certain about this.'
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Footnotes
[40] WIT 0097 0291 Dr Joffe
[42] WIT 0097 0157 - 0158 Dr Joffe
[43] WIT 0097 0159 Dr Joffe
[44] WIT 0099 0033 Dr Jordan
[45] WIT 0099 0036 Dr Jordan
[49] Dr Jordan retired in May 1993. See WIT 0099 0010 Dr Jordan
[52] WIT 0120 0069 Mr Wisheart
[53] WIT 0120 0070 Mr Wisheart
[55] Consultant paediatrician, Gloucestershire Royal Hospital, REF 0001 0008 - 0009
[56] Consultant paediatrician, Princess of Wales Hospital, Bridgend, REF 0001 0115
[57] Consultant paediatrician, Princess of Wales Hospital, Bridgend, REF 0001 0109
[58] Consultant paediatrician, Nevill Hall Hospital, Abergavenny, REF 0001 0129
[59] Consultant paediatrician, Singleton Hospital, Swansea, REF 0001 0087 - 0088 . Dr Evans said in his letter that this was `many years after' he had elected to send his patients to Cardiff, which he did in 1991
[60] Consultant paediatrician, Derriford Hospital, Plymouth, REF 0001 0147
[61] Those clinicians whose practice fell within the Terms of Reference and who were in post at a time when or not long after the reports were likely to have been sent (letters were not sent to clinicians who left post before 1987, or did not arrive in post until 1992 or later)
[62] Consultant paediatrician, North Devon District Hospital, Barnstaple, REF 0002 0015 Dr Bosley
[63] Consultant paediatrician, Derriford Hospital, Plymouth, REF 0002 0030 Dr Jones
[64] Consultant paediatrician, Withybush General Hospital, Haverfordwest, REF 0002 0005 Dr Palit
[65] Consultant paediatrician, Royal United Hospital, Bath, REF 0002 0031 Dr Rudd