Response to the JCPCT Safe and Sustainable Consultation regarding the future configuration of paediatric cardiac surgery

5.1  The dream abused – the misuse of the 2009 paper

5.2  The perverse decision to ignore overseas private patients

5.3  The perverse research assessment

5.4  The flawed approach to quality

5.5

5.6  The misunderstood co-location

References

Having been set up to fail to do justice to both the Royal Brompton and the approach it represents, S&S stumbled through the process and made a series of demonstrable errors in its handling of the evidence about clinical outcomes, which as the Minister of Health has now made clear should determine this issue.   We will in this section review the specific and identifiable mistakes that have paved the way to what threatens to be a disaster for patients lasting decades.

5.1  The dream abused – the misuse of the 2009 paper

5.1.1     The Royal Brompton has for some years recognised that there would be value in a visionary new shared centre for heart and lung disease within which both approaches could flourish. We do recognise that there would be advantages of scale – there are disadvantages as well, but on balance we agree that a new centre, properly resourced in which we all pooled our assets would be to the benefit of all our patients. This was described in the 2009 paper approved as an outline by the Boards of both GOSH and Royal Brompton. [22]

5.1.2     This has been misrepresented by S&S as an agreement that the Paediatric surgery at the Royal Brompton should close and all the work be transferred to GOSH. Thus when asked to explain the S&S process at the Emirates Stadium, Mr Leslie Hamilton, one of the Steering Group members, referred to the 2009 paper on six occasions, in response to every question he was asked. He asserted that Royal Brompton had agreed to a proposal to move paediatric cardiac surgery in 2009 and professed not to understand what the fuss was about now. This is a misrepresentation of the facts.

5.1.3     The case for creating an innovative new Centre is set out at paragraph 9.3.1 of the 2009 paper:

           "The working group agreed that a single site option with

           improved patient care and family facilities, and staff working

           conditions would be the ideal.  Further, it was recommended that

           the joint respiratory facility should end up in WC1 and not SW3. 

           Although RB&H would lose co-location adult links (clinical,

           academic) it would gain easy access to non-respiratory paediatric

           specialists". [23]

5.1.4     These words appeared in the context of a carefully planned and financed joint project run by the teams from both hospitals. The words above appeared under the heading “Phase 3” and was to follow Phases 1 and 2 which were described in paragraph 9.1 and Appendix 10. The coming together was to be preceded by a number of steps which were to involve an enormously ambitious new centre to be built by the Royal Brompton and GOSH and jointly owned.  Appendix 10 paragraph 2 recognised that:

         "any relocation of cardiac services would require inpatient

          respiratory services to similarly relocate". [24]

And a single site would be the ideal only so long as

         "there were no compromises to patient standards". [25]

Amongst the long list of things Appendix 10 agreed would be necessary before this could happen were the provision of:

• 20 CF (Cystic Fibrosis) cubicles and 20 other respiratory beds

• Segregated 8-roomed CF clinics (4 per week) and at least 10 respiratory clinics per week

• Dedicated Sleep Unit of 6-8 beds

• Day Case Unit to handle up to 500 /year [26]

5.1.5     S&S omit any reference to these awkward details in what is a startling example of quotation out of context. The original proposal was summarised in the crucial paragraph 6.4 of the Report:

          "An evolutionary approach will be adopted, building on the current

          collaborative ways of working, transitioning gradually to a single

          organisation and eventually to a single site, subject to the

          availability of appropriate space and related funding." [27]

5.1.6     In other words, the 2009 paper described an ambition of both institutions working together to promote all of their relevant services in a new properly funded, single site, world-leading centre in which cardiac and respiratory services would relocate after exhaustive preparations. This would enable both teams to be preserved, it would build on the shared brands of the Royal Brompton Hospital and Great Ormond Street. We identified a careful process that would be necessary before respiratory and cardiac services, joined at the hip, could be moved together to a new centre.

5.1.7     This is almost the antithesis of the smash and grab raid which is now proposed by the JCPCT whereby the paediatric cardiac surgery is to be torn out of the Brompton and distributed between two other centres, rendering the interventional cardiology, the respiratory medicine and ACHD services at Royal Brompton non-viable and with it the potential fiscal viability of the hospital.

5.2  The perverse decision to ignore overseas private patients

5.2.1     Because of its international reputation as a world-leading centre, the Royal Brompton has attracted a large proportion of private patients and paying patients from a number of sources overseas. These are plainly a valuable resource: it is often overlooked that revenues from private patients make a valuable contribution to NHS trusts’ overall income streams, money which is then reinvested back into NHS services. It may or may not be true that they are not in the long term as reliable a source of income as NHS patients, but they show no signs of slowing up and they are part of the demand that the service as a whole wishes to meet.  Over the 8 years since 2003 the volume of our patients coming from overseas has been fairly stable. It has fluctuated between 58 cases in 2004/05 and 80 cases in 2006/07.It is not, incidentally, true that they all come from countries such as Greece that are economically challenged.

5.2.2     S&S decided to ignore the overseas paying patients who come to the Royal Brompton, so that its “magic number” of 500 refers only to UK  patients, as though overseas private patients did not count as valid clinical cases within the total of 126 patients managed by each of 4 surgeons!

5.2.3     The exclusion is flawed because the S&S was concerned to assess capacity rather than marketing achievement: the overseas patients are characteristically more complicated – the simplest procedures, such as the closures of the patent ductus, are more likely to be done in their countries of origin. More will be re-operations, which are characteristically more challenging and absorb more theatre and PICU time. Thus if the overseas patients did stop coming, they would free up more spare capacity and mean the Brompton was able to do even more cases. There is some evidence of this in Table 1: the slight diminution in private and overseas cases in 2010 was associated with an increase in total cases in the year.

5.3  The perverse research assessment

5.3.1     When the NHS was founded in 1948 a single specialty hospital was designated as the Postgraduate Teaching Hospital for each of 12 subjects. These hospitals, run by their Preserved Boards of Governors were designated by the Minister of Health as the postgraduate centres of excellence for each specialty. What has become the Royal Brompton was thus designated as the national centre for cardiac disease by the Minister of Health in SI 1948 No 979 under powers created by the NHS Act 1946.  London University established a national centre of academic research to partner each of the hospitals.  Thus, Great Ormond Street was established as the Postgraduate Teaching Hospital for the single speciality of paediatrics and the Institute of Child Health was established by London University as its research partner.  What became the Royal Brompton Hospital was designated as the Postgraduate Teaching Hospital for cardiology and chest medicine and surgery and the National Heart & Lung Institute (NHLI) was established across the road as its research partner.

5.3.2     Over the course of the next 60 years this partnership has pioneered the development of many aspects of cardiac science as well as congenital heart disease. The result is an enormously wide range of research which informs every aspect of paediatric cardiac surgery. The NHLI now boasts 28 Imperial College professors, all specialising in some aspect of cardiovascular medicine; some of them are pure scientists but many of them hold shared appointments as clinicians at the Royal Brompton. The S&S team have no particular skill in assessing the quality of research, being a mixed specialty group of people. Indeed it was the absence of anyone there with an express brief to represent the interests of research that Dr Macrae pointed out when he suggested they should co-opt Dr Piers Daubeney, a Reader in Paediatric Cardiology to the SG in 2009. It is thus surprising that the Committee should have taken upon itself the task of reassessing the quality of research nationwide and ignored the work of the Higher Education Funding Council for England (HEFCE) in its Research Assessment Exercise (RAE) which was published in 2008.  This was an enormous and rigorous attempt by the academic community nationwide to grade every university for the purposes of planning the future work of HEFCE in deciding where to distribute funding for future research. It commands general respect for its rigour and fairness, even amongst the disappointed centres. Since this will determine how a large amount of research money was distributed over the next 10 years it was fiercely competitive and every university put forward those whom it thought were doing the best work and they were then graded by their peers.  

5.3.4     It is remarkable that Imperial College, at which the NHLI is located and the Royal Brompton provide the cardiological component, was found to have more cardiology researchers doing 4* work, that is work of

          ^" Quality that is world-leading in terms of originality,                      

          significance and rigour"

than any other two Centres in England put together.  It is astonishing that the Panel should have ignored this when reaching a radically different view. To reject such an authoritative conclusion reached after such an exhaustive process looks brave if not idiosyncratic; to fail to refer to the HEFCE’s RAE when doing so looks ill-informed.

5.3.5     At the same time as HEFCE was recognising the pre-eminence of Imperial College’s academic research, the NHS National Institute of Health Research (NIHR) had to decide where to site two of its Biomedical Research Units in cardiovascular and respiratory medicine.  This is the Department of Health’s equivalent recognition of excellence and two were placed in the Royal Brompton Hospital. It is only a small component of the research being carried out at the Brompton and the NHLI – but as a recognition of excellence in research by the NHS it is unequalled. Here at least the S&S team did recognise the presence of the BRU, but they disregarded it on the basis that:

          "The Trust has a good track record with clinical research however

          the panel felt this has recently slipped and the research

          undertaken by the two BRUs at the Trust is not relevant to

          paediatric cardiac surgery…The panel did not feel that there were

          explicit plans for research undertaken by the BRUs to include

          research relevant paediatric cardiac surgery" [28]

This sort of value-judgement is hard to counter but the breadth and volume of publications undertaken by Royal Brompton is hard to reconcile with such a proposition (http://www.rbht.nhs.uk/research/projects/publications/

and http://www.rbht.nhs.uk/research/projects/).  More cogently HEFCE found that the scale of the work being done here dwarfs that at other centres.

5.3.6     It is true that one of the two BRUs is less likely to be directly relevant to cardiac surgery since it is concerned with respiratory medicine. However even here we may note that primary ciliary dyskinesia, a respiratory condition, is also associated with complex congenital heart disease (an association first described at this institution) and there are ongoing joint projects which might sit in either BRU. The same is true of acute lung injury after cardiac surgery, in which Dr Nazima Pathan is leading an important project.

5.3.7     Nevertheless, we do accept that the majority of research work in cardiovascular medicine undertaken by the NIHR and the majority of work undertaken by the cardiovascular BRU do not deal with the subject of paediatric cardiac surgery narrowly defined.  But what S&S overlooked, inexplicably, is:

     5.3.7.1       The BRU means that the DoH NIHR, in its way as

     respected as HEFCE, although not setting out to do the same thing, has 

     given Royal Brompton a similar vote of confidence in the quality of its

     research;

     5.3.7.2      That the future best interests of patients suffering from

     these diseases will be served by supporting a broad base of research

     into cardiovascular science,  not by concentrating narrowly on surgical

     research. The damage that will be done to research as a result of this

     decision will impact on future generations.

5.3.8     In fact research being carried on here over the next five years will pioneer new treatments for heart disease using gene therapy, stem cells, tissue engineering and mechanical and electrical devices.  We are also working on cardiovascular genetics in close synergy with advanced cardiac imaging and cardiac positron emission tomography (PET).  We expect that this will lead to a stream of discoveries about new mechanisms of heart disease and new treatment modalities for them.  The imaging technologies will also be used to develop new techniques for delivering novel treatments, such as stem cells. It may be that the Panel decided to ignore work being done at the NHLI on the grounds that it is not taking place in the Trust, if so this is difficult to understand.

5.3.9     Work being carried on at Royal Brompton which is not being carried out by cardiac surgeons includes studies of the following:

• The incidence and nature of specific congenital diseases in this country and abroad which have elicited risk factors for poor outcome from surgery. 

• An enormous research study into the association of assisted conception and congenital heart disease. 

• The use of clopidogrel to prevent post operative thrombotic disease in paediatric surgery. 

• The use of Ivabradine which slows the heart rate in patients with congenital heart disease.

• Studies of connexins, which are proteins composing the junctions between heart muscle cells and may be responsible for impaired cell to cell communication and hence the development of congenital cardiac abnormalities.

• World-leading work is being carried out at Royal Brompton Hospital into cardiac electrophysiology and cardiac morphology studying the structure of the heart will help to reduce the dangers of surgery.

• We are unique in having two Readers in Fetal Cardiology and their present projects, in addition to the description of structural defects at a time when the fetal heart is tiny include 

        - Studying fetal ECGs and arrhythmias,

        - Studying perinatal adaptation of the fetus with CHD

        - Investigating biochemical markers in CHD and 3D-fetal

          echocardiography.

        - The development of normative data.

The contribution of the Brompton to the clinical care of the fetus with CHD, like its work in teaching sonographers and other professionals to recognise f-CHD with the aim of improving prenatal detection rates does not appear to have been taken into account at any point when S&S ‘graded’ the Royal Brompton against other centres in the UK.

5.3.10     None of this is research into paediatric cardiac surgery per se, but, crucially, these are studies are likely to benefit the service offered to such patients over the next 10 years and they are crucially dependent on the clinical work with patients going on around them. The proposition that Royal Brompton is not an outstanding international centre of research simply does not stand comparison with the objective evidence, and the proposition that none of this will benefit patients with CHD is similarly unsupportable.

5.4  The flawed approach to quality

It is very difficult to understand how S&S has reached its conclusion in assessing the quality element of different Centres.  The view that was reached does not stand comparison with the objective data which shows for example that Royal Brompton’s mortality data stands comparison with other speciality centres elsewhere.  Certainly none of the documentation that we have seen enables us to understand what the Panel mean by quality or the respects in which the other London centres were found to be better than Royal Brompton.

5.5     At the moment we are quite unable to understand how the Panel have reached their assessment of Quality.  We have requested an explanation repeatedly but as of June 28 2011, we have met with obstinate resistance. We have called for the raw data relating to the assessments of the other centres and hope that when these are forthcoming, as of course they will eventually have to be through the Freedom of Information Act and the process of disclosure in our application for Judicial Review, they will be taken into consideration as part of this consultation.

5.6  The misunderstood co-location

5.6.1     The strongest argument of those who believe in a horizontal approach is that any other specialist services that a child might need will be available on site from a dedicated team already there.  Great Ormond Street Hospital (GOSH) understandably believes that it has unequalled strength in this direction.  Evelina Children’s Hospital believes that it combines the best of both worlds since it has adult medicine available from the adjacent Guy’s & St Thomas’ Hospital whilst having a large range of paediatric specialists available within the Evelina Children’s Hospital itself.  In fact there are good grounds for concluding that all three hospitals have to make compromises and that the compromises made by the Royal Brompton are no less advantageous to patients than those made elsewhere.

5.6.2     First, the importance of respiratory medicine to these children cannot be over stated.  A significant proportion of children being treated for cardiac disease also need the attention of respiratory physicians and vice versa.  Royal Brompton has the strongest respiratory team in London led by Professor Andrew Bush and indeed that team is relied upon by the Evelina Children’s Hospital to assist with some of their cardiac surgical cases.

5.6.3     By contrast, Royal Brompton enjoys an advantageous relationship with the Chelsea & Westminster Hospital (“C&W”) in the form of fixed Service Level Agreements (SLAs). C&W is 10 minutes’ walk from Royal Brompton, less time than it takes to cross the campus at many a larger hospital and certainly less time than it takes to reach, for example, the Evelina from Guy’s or Lewisham Hospital, the Freeman Hospital from the Royal Victoria Infirmary in Newcastle or Leeds General Infirmary from St James’s Hospital in Leeds.  All of these intra-Trust journeys are far longer than the distance between C&W and the Brompton.  Furthermore, Royal Brompton has two priceless advantages arising from its SLA with C&W.  The first is that the attending doctor is always a Consultant and second, once they have reached Royal Brompton it is a matter of moments to reach the relevant ward and obtain whatever support is needed.

5.6.4     Where such compromises have to be made, a fair assessment will inevitably revert to the standards for co-location laid down by the Baker Report. There is no question but that our arrangements mean that we meet those requirements handsomely.

References:

22     A Collaboration Between Royal Brompton & Harefield NHS Trust and Great Ormond Steet Children’s Heart and Lung Services – A Proposal to Establish a National and International Service for Children with Heart and Lung Disease 3 April 2009

23     Ibid, page 14     

24     Ibid page 51

25     Ibid

26     Ibid

27     Ibid page 11

28     Report of Sir Ian Kennedy’s expert Panel 2010