Final Report > The Adequacy of Care

The Adequacy of Care

Chapter 18: The Designation of Bristol as a Centre for Neonatal and Infant Cardiac Surgery

1 Before we conclude this section on the organisation of paediatric cardiac surgical services (PCS services) in Bristol, it is proper to stand back and ask whether Bristol should ever have been designated as a supra regional centre (SRC) for open-heart paediatric cardiac surgery (PCS) on the under-1s. This, after all, is the area of surgery which is of such concern to us. We must remember that designation took place in 1984. Thus, we can only take account of those factors which were known (or knowable) at the time. But, of course, these include the split site, the shortage of paediatric cardiologists, the lack of a full-time paediatric cardiac surgeon, and the low numbers of open-heart operations being carried out on children under 1. Before we look at what happened, we need to make one point very clear: designation was not the same as permission. Bristol could have carried out open-heart surgery on the under-1s without designation. Indeed, it was the fact that some hospitals did and that there was a proliferation of PCS services which ultimately led to de-designation. But, while designation did not connote permission, it did mean financial support and, more subtly, recognition.

2 On one view, given that it was designated, questions of adequacy should focus on how Bristol performed once designated. Alternatively, it could be said that Bristol should not have been designated in the first place. It could be said that problems about adequacy of care were built into Bristol from the start to a greater or lesser extent and were bound to emerge if designation took place. On this view, once designated, these problems and others began to appear. The reason for Bristol's designation is something of a mystery (the evidence is silent as to what precisely happened). Certainly, on the criteria which were supposed to guide the process of designation, Bristol did not appear to meet them. [1] Two additional criteria were offered in evidence as explanations: geographical location and the capacity for development. As regards the latter, the evidence showed only very gradual development in Bristol as regards the numbers of children operated on. Moreover, Sir Terence English agreed in evidence that if the capacity for development were a criterion, it should have been closely monitored to see whether in fact it was taking place. On this view, continued designation should depend on an increase in the number of operations carried out. In fact, lack of progress in achieving this increase was reported. But this was taken by the Supra Regional Services Advisory Group (SRSAG) as a ground for urging Bristol to redouble its efforts rather than for insisting on de-designation. We may well regard this as a triumph of hope over experience.

The other criterion advanced, geographical location, served both as a ground for justifying the original designation and for the subsequent perseverance. But geography on its own was not a formal criterion as set out by the Department of Health (DoH) in September 1983. [2] It had been advanced by earlier working parties but was not formally adopted by the DoH. [3] In the case of Bristol, however, it became the criterion. The argument was twofold. Given that family-centred care was appropriate, it was wrong to `disenfranchise' parents over a wide sweep of the South West and South Wales by causing them to have to go to Southampton (which was awkward to get to), or Birmingham. Secondly, care did not cease once surgery had been carried out. Outpatient care from visiting cardiologists and repeated return trips to the supra regional services centre were on the cards. To travel to Bristol (it was thought) was less onerous for those in the South West and South Wales than to travel further. Set against these arguments is the simple proposition that if it had been put to parents that by travelling 80 miles further up a motorway, the chances of survival of their child could well be doubled (or more), the parents would probably have opted for elsewhere. Nor would the number of operations necessarily have swamped the other centres. Bristol never operated on very many patients in any given year. And the funds allocated to Bristol could have been allocated more efficiently elsewhere to meet the need created by the extra volume of cases. We should also bear in mind that children in Norway were routinely flown for surgery from Bergen in Norway to Leeds with no apparent ill-effects, and children from Germany were flown to Great Ormond Street Hospital.

3 There is a case for arguing, therefore, that Bristol was designated for reasons which were wrong: geographical location and potential (the capacity to develop), coupled with the `background noise' of the ambitions of a provincial medical school. It may be too strong to say that the establishment of the PCS service at Bristol was `doomed from the start'. It may be fair to say that the designation of Bristol was not a decision which was really in the interests of the child patients. Furthermore, with the benefit of hindsight, designation has all the qualities of a Greek tragedy: we know the outcome and yet are unable, from our point in time, to prevent it unfolding. One last counter-argument can be raised: that a lot of children did very well after being cared for in Bristol. But this misses the point. More children died than should have been the case.

Footnotes

[1] DOH 0002 0023. The criteria were: `1 The service should be an established clinical service. 2 There should be a clearly defined group of patients having a clinical need for the service. 3 The benefits of the service should be sufficient to justify its cost when set against alternative uses of NSH funds. 4 The cost should be high enough to make the service a significant burden for the providing regions. 5 Supra regional funding ... should be clearly justified either a) by the small number of potential patients in relation to the minimal viable workload for a centre or b) by the economic and service benefits of concentrating the service in fewer and larger units shared between regions ... or c) as an interim measure, by the scarcity of the relevant expertise and/or facilities. 6 The units to be designated should be capable of meeting the total national caseload for England and Wales'

[2] DOH 0002 0023

[3] RCSE 0003 0017. `The Second Report of the Joint Cardiology Committee of the RCP/RCSE' in 1980 referred to `geographical location'