Annex A > Chapter 7 - Supra Regional Services > NICS as a supra regional service (SRS)
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NICS as a supra regional service (SRS)
29 Numerous reports, papers and notes of meetings were written on the topic of NICS and will be referred to hereafter. For convenience, the following table sets out the principal documents:
30 Likewise, discussions regarding NICS as an SRS took place over several years and are also dealt with in the text hereafter. For convenience the following table sets out the principal meetings:
31 The system of supra regional funding for designated services came into force at the beginning of the financial year 1983/84 and initially applied to four services but did not include NICS. [18] The Inquiry took evidence as to the inclusion of NICS as a designated service with effect from the following year, and the way in which Bristol came to be a designated centre.
32 In 1967 the Joint Cardiology Committee of the RCP of London and the RCSE prepared a report (for publication in 1968) on the need for special cardiac centres for diagnosis, treatment and research. [19]
33 In 1967 the British Paediatric Association (BPA) reported a need to concentrate operations to remedy congenital heart defects in young children in a few centres only. In 1979 the BPA followed up its 1967 Report with the recommendation that six NICS centres (including one in the South West) should be established. [20]
34 In 1980 the London Health Planning Consortium recommended three centres to be established in London. [21]
35 It was with this background that, in 1980, the Second Report of the Joint Cardiology Committee of the RCP and the RCSE was published. [22]
36 Amongst other things, the Report indicated that: the size of a supra regional centre should depend on the population served; diagnosis and treatment were intimately linked; it was to be expected that the greater the number of operations performed the less should be the rate of mortality; the number of units should be `certainly under ten'; and that the selection of SRCs should be based on present workload, geographic location and quality of work. [23]
37 In 1982 the Regional Medical Officers suggested nine centres (being exactly those that were designated in 1984). [24]
38 In 1983 the SRSAG considered the provision of treatment for children born with congenital heart disease. At that time, two quite recent reports were available, from the BPA (1979) and the Joint Cardiology Committee of the RCP and the RCSE (1980).
39 The fundamental theme accepted and endorsed by the SRSAG was that provision should be concentrated into relatively few centres to ensure a high standard of diagnosis and treatment. It was also noted that there were too many small units receiving financial support that would be better directed towards developing the larger and more efficient ones.
40 At this time the SWRHA was of the view that `... Bristol is not necessarily large enough to fulfil the criteria of a catchment population of 5 million ...' [25]
41 This estimate was derived from estimates accepted by the SRSAG:
`The BPA estimated that the incidence of CHD [congenital heart disease] to be of the order of 7-8 per 1, 000 live births. This figure has been accepted more recently by Macartney, Kernohan et al, the JCC [Joint Cardiology Committee of the RCP and the RCSE], and in a report of a joint working party of the Royal College of Surgeons and Royal College of Physicians.' [26]
42 The SRSAG went on to note that:
`... an estimation of need is dependent upon the birth rate, and it is not possible to forecast with any certainty whether it will move significantly in either direction, but it may be acceptable to suggest that only a marked swing will exert any real influence for planning purposes ...'
43 Dr Barry Keeton, consultant paediatric cardiologist, Southampton General Hospital, and a member of the Inquiry's Expert Group, during his evidence to the Inquiry, described his recollection of the process behind the setting up of the SRS for NICS. He said:
`... I recall that prior to the setting up, there were eight centres that had been nominated for supra regional designation, and then my next recollection is that the Regional Medical Officers commissioned a report. I had some personal knowledge of this because the lady who did it came round to visit me and I gave her some help in the data, the statistics from Southampton.
`Following that Regional Medical Office report, there were then 9 centres and that was the point at which Bristol was added on, I think in 1984, to the supra regional list.' [27]
`Q. So your understanding was that the view of the profession, before the RMOs had their meeting, was that essentially Bristol was not a natural candidate for supra regional status and it became one following that meeting.
`A. Yes. It led to some correspondence between members of my group, my surgical colleagues and the Regional Medical Officer, ... I can recall his letter very well, saying that he thought that centres were based around people's expertise and not around railway timetables and the geography was not an issue, but the centres should be designated according to their results.
`There were discussions then with the Supra Regional Services about audit results. I attended each year the meeting of the department of the Supra Regional Services Committee, and a member in each of the hospitals was there to present any problems that they had and what their results and things had been from the previous years, but I remember at those meetings we were calling then for the setting up of a country-wide audit on the results of paediatric cardiac surgery, but it never really got off the ground, it was never funded.
`A. It would be in the early days of supra regional funding. It must have been in the middle 1980s.' [28]
45 Dr Hyam Joffe, consultant cardiologist, also recollected that he `had a hand' [29] in Bristol being designated. He said:
`When we knew that these centres were being designated, I believed it was important, if possible, for Bristol to provide one of these designated services, partly because of geographical reasons, partly because I believed the unit had the potential to become an outstanding unit; and I was, secondly, I suppose "appalled" is the word, at the fact that there had been no attempt by the people who were making the designations to visit Bristol and see the centre and find out what it had to offer. So I wrote a letter which was supported by Dr Jordan to the individual that I thought was the Chairman of this supra regional group.' [30]
46 Dr Joffe, Dr Stephen Jordan, consultant cardiologist, and Mr James Wisheart, consultant cardiac surgeon, wrote a memorandum [31] expressing their view that:
`... Bristol has an irrefutable claim of recognition as a supra regional cardiac centre for neonates and infants ... Redirection of these [cardiac] patients to a centre elsewhere must result in a demise of meaningful paediatric cardiology in Bristol.' [32]
47 The memorandum pointed out that Bristol had historically provided a paediatric cardiac service to its catchment area: [33]
`The paediatric cardiology service already functions as the de facto Regional and Supra Regional Centre (although not yet officially recognised as such), drawing 28% of new referrals to the unit from Avon, 48% from the rest of the SW Region and 24% from South Wales, North Wessex and elsewhere ...
`The long-term management of patients is supervised near their homes through a system of Consultant Cardiac Clinics developed over many years and probably more comprehensive than in any other paediatric cardiology service in England. Regular peripheral clinics are held in Bath, Swindon, Cheltenham, Gloucester, Taunton, Barnstaple, Exeter, Torquay, Plymouth and Truro. Close liaison exists with paediatricians in all these centres, who would resist any curtailment in the services they and their patients receive.'
48 The clinicians' memorandum argued that it was:
`... unrealistic to base any such decision simply on current surgical volume in infants, without taking cognisance of other important factors such as geographical position and communications, association with the University Department of Child Health, historical evolution and ties with paediatricians in the region and adjacent areas of other regions, anticipated expansion and development, and standards of associated paediatric and neonatal services.' [34]
49 The memorandum refers to, and apparently rehearses, arguments put forward in October 1981 favouring Bristol as an SRC including the following: (1) the service already functioned as a de facto supra regional centre; (2) there were two experienced and expert paediatric cardiologists and two experienced cardiac surgeons, one of whom had been specially trained in congenital heart disease surgery; (3) long-term management of patients near their homes through a system of consultant cardiac clinics; (4) the geographic position of Bristol with major rail connections and road services; (5) that the Bristol Royal Hospital for Sick Children (BRHSC) was `ideally suited' to provide direct access to the expertise of a range of clinicians and healthcare workers. [35]
50 In relation to the geographical case for designation of Bristol, Dr Halliday was asked:
`Q. You say more than once, I think, in your statement, that there was evidence that the more operations a unit did, the better they got at it?
`Q. I am putting it very crudely, but that is the essential principle, is it not?
`Q. So one would expect the biggest centres to have better results?
`Q. If one factors that into the equation, it makes a bit of a difference in the geographical case, does it not? The geographical case depends upon, does it not - tell me if I am wrong - the results being equal in the two centres being compared?
`A. Yes, but if you are designating a service for the first time and you are endeavouring to cover the country, you may well have to identify a unit which at that moment in time is not performing as well as some of the other centres which may have been established for many years, but the intention is to develop that service, nurture that service.' [36]
51 A subsequent Departmental paper called `Centres of Excellence and Supra Regional Units, ' [37] dated 12 September 1988, addressed to managers, identified that centres suitable for designation had to qualify as `centres of excellence'. It added:
`Centres of Excellence: Units which might qualify for this title are those where a special expertise had been developed in a particular area of medicine'. [38]
52 Under the heading `Overlaps Between Supra Regional Services and Other Centres of Excellence', the same paper said:
`All supra regional services will be provided in units which would fall within the "centres of excellence" definition.' [39]
53 There is no evidence in the documentation now available that Bristol was regarded, at the time of designation, as a centre of excellence in relation to NICS.
54 Sir Terence English, [40] who was a member of the Specialist Advisory Committee in Cardiothoracic Surgery between 1979 and 1987, was asked:
`Could it be said of Bristol that in 1983 there had been developed there a special expertise in neo natal and infant cardiac surgery?'
He answered: `No.' [41]
55 In January 1987 Mr Eric Butchart, consultant cardiothoracic surgeon at the University Hospital of Wales in Cardiff, was of the opinion that Bristol was not a centre of excellence:
`... the designation of sites as Supra Regional Centres relied partly upon them being existing centres of excellence, although Bristol had been exceptional in this respect, and had apparently been chosen for geographical considerations.' [42]
56 The view of Dr Halliday was:
`My division kept close contact with all the professions within the various specialties, and attending meetings of the Society of Cardiothoracic Surgeons (SCS) and the Royal College of Surgeons of England (RCSE) when dealing with paediatric cardiac surgery and cardiology, Bristol did not actually shine as a star, whereas many of the other units such as Birmingham, Harefield, Brompton, Guy's, GOS [Great Ormond Street], would stand out, so it did not seem to be one of the leading lights in this area.
`Q. "Shine as a star" in what sense?
`A. In terms of clinical work that was going on there, in terms of research, in terms of the results that they were getting.' [43]
57 The minimum workload for a centre to be viable, and maintaining sufficient expertise, was explored. Sir Terence said:
`Q. ... Just pausing there, the minimal viable workload for a centre; we spoke earlier of a surgeon needing to do 50 as a minimum operations per year. Is that open-heart operations?
`Q. And that corresponds, does it, with the minimum viable workload?
`A. Yes. I think actually the figure that I had was 40 when this was calculated against the epidemiology of congenital heart disease within the UK and they were first thinking about it, but whether it is 40 or 50, it was considered desirable that that should be roughly the minimum number of open-heart operations performed by a single surgeon per year in the under one-year-old-age group and that there should be at least two surgeons in a unit.
`Q. Yes, that means the unit would have to do 80-100?
`Q. Just pausing there, Bristol never did, did it?
`A. No, you have just pointed out that the year before it was designated it had done three.
`A. Or four, correct. But may I add that that, in my view, is not necessarily a reason for not designating a centre, because designation to me involves - the whole concept of supra regional designation was that it was a mechanism by which a particular service could be nurtured and strengthened and developed in certain parts of the country, to provide service. That was the whole history of the designation of prospective heart transplant units, so, whereas in certain instances - for example, I believe with Newcastle, which was the third unit to be designated for supra regional funding for heart transplantation, they had in fact done some cases beforehand from money which they got, I know not where, but they had done that to prove that they could do the work, but that was at a low level. But they were seeking the designation so that they could get the funding that would follow the designation so that they could develop a proper service, which is indeed what they did.' [44]
58 Dr Halliday's view as to numbers was similar:
`Q. ... Is what you are saying that the track record in terms of numbers of operations done was not really a justification for Bristol becoming a supra regional centre?
`A. Well, it certainly did not perform anything like on a par with the other units, no.
`Q. It is very difficult to see how three open-heart operations would justify that?
`A. Well, if you look at those figures again, you will see it actually goes ten, 11, three, and so on, so there might have been a good reason, a management reason, for only doing three that year.
`Q. But if one took ten, which was the highest it had been before 1984?
`A. If you take ten, then you would have to look at outstanding units such as Harefield, who only did about ten in those years.
`Q. What then did you mean by "weakness?"
`A. It was a small unit. They were not doing many operations.' [45]
59 Dr Halliday explained the case for designation as follows:
`... Bristol was one of the units which the Royal College thought was a suitable unit for designation.' [46]
60 However, Dr Halliday characterised the case in favour of Bristol's designation as `weak'. He said:
`In the case of the designation of the units, the Royal College of Surgeons was given all the evidence we had on all the units that were asking to be considered for designation.
`In the case of Bristol, the case was weak, but there was an important point and that was the geographical cover, because all the other units covered the country well, but the South West was deprived in terms of cardiac surgery, especially for neonatal and infants. So the Advisory Group was concerned to see that part was covered. Indeed, many of the professional reports identified that there was a need for cover in that area.' [47]
61 It was put to Dr Halliday that Bristol was designated for geographical reasons:
`So we have a unit which is doing a small number, and you say it may well correspond with Harefield at ten, but obviously not at three, a unit where the view was - I will come back to the evidence for that in a moment - that it was not a star; and the basis that you are telling me was decided by the Group to designate Bristol was geography?
`A. A main reason was the geography, yes.' [48]
62 Dr Halliday described the view of the SRSAG to the designation of Bristol:
`Q. So what you are saying is really: "Well, if the Advisory Group were looking at this as a matter of their own experience and the criteria, Bristol would not qualify, except on geography, and geography depends upon the quality being maintained and improved; we are assured by the Royal College of Surgeons that they are going to do their best to make sure that happens". Is that essentially it?
`A. That is essentially it.' [49]
`The weakness of the Bristol case was a factor, and I remember clearly that Terence English rang me and spoke to me about this before the decision was taken, and said - at that time, of course, he was not President of the College; I think he was actually President of the Society of Cardiac Surgeons - but he said if in fact the Advisory Group designated Bristol, then through the College they would endeavour to strengthen that unit.' [50]
64 Dr Halliday's evidence included this exchange:
`Q. Was anything said by Sir Terence - he was then, I think, just Terence - as to what precisely the Royal Colleges proposed to do to encourage the change in referral patterns?
`Q. So really, it was left very vague?
`A. Yes, but we were in a situation where the Advisory Group was concerned to see the country covered. We had the South West, which was not being provided for; we had Wales, which was not within the supra regional service arrangements, they were separate. We always provided services through them. So ideally we would like to see that part of the country covered.
`The professional advice was that Bristol was a suitable unit. The Advisory Group could have decided, "Well, we do not accept professional advice" and not designated the unit, but given that there was a pressing need, we have all these patients travelling all the way to London, the Advisory Group, I think rightly at the time, decided to designate Bristol.' [51]
65 Sir Terence thought that the original decision to designate Bristol was correct:
`... and there was nothing to suggest to those who were not intimately involved in 1984, and again in 1986, at the time of the first report, the first Working Party's report which I chaired, that Bristol did not have the capacity to develop in that way if the will were there. That was the reason for thinking it was reasonable to designate it in the first place and to continue it.' [52]
66 Sir Terence also confirmed that the process of development of the unit required close monitoring:
`Q. ... The question I put to you is: if that criterion [capacity to develop] were adopted, what would your view be about the proposition that it could only be justified as a variation from the existing criterion if the progress of development was very clearly, very tightly and very carefully monitored?
`A. I believe that is absolutely right, Chairman.' [53]
67 Thus it was that, on advice from the SRSAG, the Secretary of State recognised nine centres as SRCs for NICS - with effect from 1984-85 - and offered protected funding: `Bristol Royal Infirmary/Children's Hospital' was designated as such a unit. [54]
68 In selecting NICS as an SRS, the SRSAG drew a distinction between patients over and under 1 year of age. This created some practical difficulties and the matter was taken up by the SWRHA with Dr Halliday, as recorded in a letter of 21 March 1984 from Dr Marianne Pearce (then Specialist in Community Medicine at the SWRHA) to Dr Ian Baker (then Acting District Medical Officer, Bristol and Weston District Health Authority):
`I have informally discussed with Dr Halliday and Dr Alderslade the possibility of including infants selectively deferred for surgery after the first year. They were adamant that this could not be done because the numbers of children would then be so large as perhaps to make regional units viable. I know from previous conversations with our consultants that they regard this as being unreasonable as they are making a selective decision to defer infants. Both the DHSS doctors warn that if the age limit was put up for all units, as it would have to be, the service may be reclassified and not regarded as of supra regional status, as has happened with bone marrow transplant.' [55]
69 Dr Halliday's evidence to the Inquiry, on this point, was that the drawing of a distinction between patients under 1 year of age and those over 1, with the former but not the latter being included in the SRS arrangements, was `somewhat artificial'. [56]
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Footnotes
[18] DOH 0002 0022; circular HN(83)36
[19] `British Heart Journal'; 1968 40: 864-8
[20] BPCA 0001 0014; `BPA Report' 1967
[21] ES 0002 0007; `London Health Planning Consortium Report' ;1980
[22] RCSE 0003 0017 - 0023 ; `Second Report of the Joint Cardiology Committee' ; 1980
[23] RCSE 0003 0017 - 0023 ; `Second Report of the Joint Cardiology Committee'; 1980
[24] ES 0002 0007; minutes of a meeting of representatives of the designated SRCs, 5 December 1984
[25] HAA 0095 0071. This document appears to be dated 14 November 1983 - see HAA 0095 0073
[26] DOH 0002 0240; `SRS Report' (88)2
[31] JDW 0001 0150 - 0152 ; memorandum on the designation of Bristol as a SRC in NICS, July 1982
[32] JDW 0001 0150 - 0152 ; memorandum on the designation of Bristol as a SRC in NICS, July 1982
[33] See Chapter 11 for further consideration of the Bristol catchment area
[34] JDW 0001 0150; memorandum on the designation of Bristol as a SRC in NICS, July 1982
[35] JDW 0001 0150 - 0151 ; memorandum on the designation of Bristol as a SRC in NICS, July 1982
[37] DOH 0002 0025 - 0027 ; DHSS Paper EL(88)P/153
[38] DOH 0002 0026; `Centres of Excellence and Supra Regional Units', 1988
[39] DOH 0002 0026; `Centres of Excellence and Supra Regional Units', 1988
[40] Currently the President of the British Cardiac Patients Association; previous appointments include the President of the Royal College of Surgeons of England between 1989 and 1992
[41] T17 p.68 Sir Terence English
[42] WO 0001 0281; minutes of extraordinary meeting of the Welsh Medical Committee, 21 January 1987
[44] T17 p.69-71 Sir Terence English
[50] T13 p.26 Dr Halliday. For Sir Terence's evidence on this point, see para 83
[52] T17 p.76 Sir Terence English
[53] T17 p.79 Sir Terence English
[54] References in the text hereafter to `Bristol' refer to the Bristol Royal Infirmary/Bristol Royal Hospital for Sick Children
[55] HAA 0095 0069; letter from Dr Pearce to Dr Baker dated 21 March 1984
[56] WIT 0049 0015 Dr Halliday