19 April 2012
“While disappointed that this issue has divided the judiciary and that Mr Justice Owen’s judgment has not been upheld, we look forward to the decision-making body, the Joint Committee of Primary Care Trusts (JCPCT), considering all relevant information when coming to a decision about the future of children’s heart surgery in England, which we understand will not be taken before July. In the Court of Appeal we did not challenge the fact that the JCPCT has an open mind; we will now see what they decide.
“The Trust took this legal action on behalf of patients and their families. It was action of the last resort and taken with a heavy heart, after a number of attempts to settle the matter at an earlier stage failed. But it was taken because we remain convinced that there is a vital role for specialist cardiac and respiratory care for children and older patients to be fully integrated in a specialist Trust such as ours, which works with the significant research power of our partner Imperial College. We remain convinced that our highly respected services for patients in England and Wales will be harmed if our unit is dismantled as a consequence of the Safe and Sustainable process to date. We believe that the JCPCT’s recommended four options – none of which includes Royal Brompton – distorted the consultation process.
“We believe that the proposals were formulated without any real understanding of the effect that they would have on services for these children when they grow up and need clinical support and further surgery. It is also clear that the proposal was put forward with no real consideration of the effect on our world-leading respiratory centre.
“As early as February 2010, over a year before the consultation process began, it was being reported by clinicians on the Safe and Sustainable steering group that ‘The cardiac review had recommended that the three hospitals currently undertaking cardiac surgery in London should be reduced to two’ and that ‘the preferred view seemed to be Guys and St Thomas’s and Great Ormond Street would be the two with the Brompton patients split between the two sites’. We still struggle to understand how these views were discussed, promoted and finally recommended to the decision-making body.
“We remain of the view that the decision to close a London centre such as ours was not made on purely clinical grounds. The minutes of the London Specialised Commissioning Group, part of the JCPCT, from 26 April 2010 state: “It is likely that the rest of the country will take a view that London should take its share of the pain of closures and will seek to make one closure in the capital in order to make closures elsewhere more palatable”.
“Our position remains that the number of patients referred in to the capital warrants a network system comprising the three current centres. We already work closely and successfully with both Great Ormond Street and Guys and St Thomas’s and hope to continue discussions with them on setting up such a network arrangement.
“There are enough patients in London and the South East to support this approach and it will avoid the need for significant expenditure on expanding one of the two other centres to deal with Royal Brompton’s patients. The development of a network solution was encouraged and supported by the London Specialised Commissioning Group as part of the Safe and Sustainable review (discussions were encapsulated in the paper ‘A proposal for a London, South and East England Children’s Cardiac network’ and presented to the public in July 2010). Even as recently as October 2011 the network approach was discussed as a viable option.
“Royal Brompton & Harefield NHS Foundation Trust has never resisted change or argued for no change. We support the right comprehensive change, brought about in an evolutionary fashion that does not destroy high quality services by dismantling a team that has been built up in our hospitals over 50 years. Safe and Sustainable should be about raising the bar of quality, protecting specialist skills and providing the best possible care, without question, for patients.
“We are encouraged that a national engagement exercise has now been agreed to assess the views of patients and their families on the significant changes to specialist respiratory care that would follow if children’s heart surgery were to be stopped at Royal Brompton. We are particularly pleased that the JCPCT will now take these views into consideration before determining how to reorganise children’s heart services.
“We regret that resources have had to be diverted to this legal case, but when serious assaults are made on patient care, when internationally acclaimed clinical teams are effectively put on notice, when groundbreaking research teams who may be on the cusp of a significant breakthrough in cystic fibrosis tell us their research will not be possible under the Safe and Sustainable proposals, then drastic measures are called for. We had to fight to protect the needs of patients - now and in the future. What better cause is there than the health of vulnerable children?”
Notes to editors
1. The consultation
The Trust highlighted a number of areas in the consultation which it identified as flawed. They included:
Why two centres in London?
The national assessment of all centres identified 6 workable options for the reconfiguration of paediatric cardiac services, but only 4 were put forward for public consultation, each of which only includes 2 London centres. One of the options abandoned during the final round of the assessment, scored just as highly as one of the chosen options – but it included three London centres. The decision to reduce the number of children’s heart surgery centres in London from three to two did not stand up to scrutiny. It was based on the perception that London had to ‘share the pain’ of closure in an effort to show willing to other centres around the country.
Set the criteria … then ignore them
The Safe and Sustainable steering group set criteria, and then ignored them when considering Royal Brompton’s fate. Royal Brompton fulfils the set criteria, with four surgeons undertaking over 400 procedures each year. It is the third largest centre for children’s heart surgery in the country, with very low mortality rates and an international reputation.
Severe knock-on effects on respiratory medicine and research
The review panel ignored the disastrous effects on other NHS services at Royal Brompton if children’s heart surgery (and intensive care services) were to be withdrawn. There is only one consequence of taking away paediatric intensive care and anaesthesia from Royal Brompton – the downgrading of Royal Brompton’s specialist respiratory services. Complex care cannot be delivered without intensive care and anaesthetic back-up – taking it away means respiratory clinicians will be without the facilities and support from colleagues that they need to care for babies and children who are seriously ill. The effects on research programmes would be catastrophic and Royal Brompton consultants have already stated that they could not continue their respiratory research programmes if the Safe and Sustainable proposals were introduced.
The ‘research’ score
The successful judicial review judgment handed down in November by Mr Justice Owen centred on the assessment of Royal Brompton’s 'research and innovation' score in the exercise that determined which centres were put to public consultation. It became apparent that this score had been established using information supplied for an earlier unrelated assessment. No specific information on the hospital’s paediatric cardiac research programme had been requested and without the benefit of relevant information, a low score was given. According to Justice Owen, the consequence was to "…seriously distort the consultation process” “the unfairness being of such a magnitude as to lead to the conclusion that the process went radically wrong”. After the judicial review the score was re-marked and increased.
2. Behind the scenes
Plans to stop children’s heart surgery at Royal Brompton were discussed during management meetings at Great Ormond Street over a year before the public consultation even began. February 18 2010: “The cardiac review had recommended that the three hospitals currently undertaking cardiac surgery in London be reduced to 2 centres working together. The preferred view seemed to be Guys and St Thomas’ and GOSH would be the two with the Brompton patients split between the two sites.”
In February 2011, commenting on the pre-consultation business case, a director at the London Specialised Commissioning Group noted: “…there is something in the numbers. 1250 divided by 3 is 416 or over the minimum threshold (we’d dispute the activity is as low as this incidentally as the numbers we gather were about 200 higher and whether the national team like it or not they haven’t allowed for non-NHS funded activity which uses NHS capacity). Divide by 2 and the number is 625 and approaching the upper limit. If we’re closer to being right than the national team we have a potential problem – however that isn’t the problem here. The losing Trust could (rightly) point out that all 3 London Trusts meet the minimum thresholds (which will still be difficult elsewhere in the country) so why should any of them fall? (And there is no quality issue.)”
Moving on to discuss the situation with Royal Brompton, he adds: “It’s your call whether we’d add in the tertiary paediatric review and co-location of services as this does hit the Brompton hard. I’m reminded at this time of the maxim of Admiral of the Fleet Lord Fisher – ‘Hit hard, hit first and keep on hitting!’. We might want to bear this in mind.”
On March 3, 2011, two days after the public consultation started, Great Ormond Street clinicians were already discussing which parts of Royal Brompton’s respiratory services they would like. Dr Colin Wallis, consultant in respiratory paediatrics: “As mentioned yesterday, the respiratory consultants met today to discuss the uncertain future for Brompton respiratory services…The greatest challenge would lie in accommodating their full CF service. It is likely that we would have to create a separate CF unit, distinct from respiratory but under the res umbrella with their own beds and OPD facilities…I would like to propose another alternative: perhaps the move of respiratory need not necessarily be considered an “all or nothing” option. Perhaps we could move two services that would be very complementary to our current service provision – namely primary ciliary dyskinesia and ‘difficult asthma’ and divide the CF and general res cohort between all the other London resp centres. Better for us – but I suspect not likely to be a popular option for the Brompton team.”
And on March 9 2011, Professor Martin Elliott, co-medical director at Great Ormond Street, emails: ”Also we need to have a VERY positive plan as to how we can take the RBH CF service. I know you have spoken to Anne, but the DH and S&S want us to have something very effective and concrete with which to negotiate.”
Colin Wallis responds: “Meeting with the team at 12.30 today to work out the principles for this. It is not just CF however. We will need to consider their other respiratory patients and the Brompton’s large OPD load.”
Martin Elliot: “Of course. But I think the right answer is ‘yes we can’ and then ‘what/who will we need to deliver it’.”
3. What was ‘the network solution’?
The development of a network solution was encouraged and supported by the London Specialised Commissioning Group as part of the Safe and Sustainable review (discussions were encapsulated in the paper ‘A proposal for a London, South and East England Children’s Cardiac network’ and presented to the public in July 2010). A network would protect specialism and provide patients regionally and nationally with access to the best clinical expertise.
“We propose establishing a Children’s Cardiac Network for London and the South and East of England which will be a beacon for excellence in children’s cardiac care and related research and training internationally. The network will be unique within the UK in several respects:
- It will enable us to achieve significant further improvements in patient outcomes as a result of very considerable critical mass of cardiological and surgical expertise and experience at a sub-specialist disease / condition level.
- The close relationship between the tertiary centres within the network will create an outstanding environment in which clinical staff in training will rotate to gain exposure to a broader range of experience, or permitting them to specialise in particular sub-specialist care.
- The network will build on the strengths of existing research and innovation initiatives, and will provide, jointly’ opportunities for focussed or ‘commissioned ’transitional and patient-based research.”
According to the minutes of the London Specialised Commissioning Group 26 April 2010: “Following the meeting with Trust Chief Executives on 13 April it was agreed to proceed with the single network model for the South east of England…as such a collective approach would be taken for Sir Ian Kennedy and Sir Neil McKay’s groups.”
4. Royal Brompton’s Model of Care
Congenital heart disease benefits from the approach taken at specialist hospitals – Royal Brompton’s patients are often diagnosed in the womb and continue their care with the same team through infancy, childhood and into adulthood. The Safe and Sustainable process adopted a position that these patients should be treated in children-only hospitals, ignoring the life-long nature of the care needed. The process favoured children’s hospitals. Internationally, both ‘foetus to old age’ and ‘children only’ services operate effectively.
5. The respiratory issue
The night before the Safe and Sustainable public events in London (May 2011), members of the Trust read in a leaflet circulated to attendees, that an independent panel was to be set up to investigate the knock-on effects on respiratory medicine if children’s heart surgery was stopped at Royal Brompton. The panel, led by Adrian Pollitt, was asked to investigate the extent to which paediatric respiratory services could be safely delivered at the Royal Brompton Hospital in the absence of paediatric intensive care and anaesthesia.
The panel concluded that:
- Royal Brompton provides a world class respiratory service with an impressive respiratory research programme
- Anaesthesia provision is essential to maintain paediatric respiratory services, and that a reduction in paediatric surgical activity would affect the ability of Royal Brompton to provide anaesthesia services for children in their current form
- Complex bronchoscopies needing intensive care support would have to be referred elsewhere
- Complex cystic fibrosis cases “may have to go elsewhere for specific aspects of their management”
- Bronchoscopy for patients with severe asthma would need to be undertaken elsewhere, in a centre that has a PICU
- The current long-term ventilation service could not continue to be delivered at Royal Brompton site
- Removing on-site anaesthesia and intensive care for children “may affect the motivation of personnel working in these changed circumstances and could also have implications for the successful research programme”
According to the panel, children with rare lung disorders did not warrant “material consideration” as numbers are small.
But the panel also concluded that non-specialist respiratory work could still continue at Royal Brompton.
One of the panel members, Dr Neil Gibson, consultant in paediatric respiratory medicine (Royal Hospital for Sick Children, Glasgow) and Secretary/Treasurer, British Paediatric Respiratory Society, the only UK paediatric respiratory specialist on the Pollitt Panel, wrote to Sir Neil McKay in January 2012:
“I felt compelled to write because I remain very concerned that those of us in the panel chaired by Adrian Pollitt were asked to answer a very narrow question. We were regularly reminded that we must stay within our remit and ’answer the exam question’.
We were asked to address whether the respiratory services at the Royal Brompton Hospital were or were not viable following the removal of paediatric cardiac surgery. We found that there were ways that the current services could continue to be delivered and made some constructive suggestions on these points. It was not part of our remit, nor were we allowed, to make detailed comments as to how appropriate such a proposed arrangement would be for paediatric respiratory services in London. It is absolutely imperative that before cardiac surgical services are withdrawn from the Royal Brompton Hospital that a very detailed piece of work is done to ensure that a sensible, safe and sustainable plan is made for paediatric respiratory services. My own personal professional view is that the models of care that we suggested in the Pollitt Report could be made safe but they are certainly not necessarily the best way to provide a sustainable service.”
Others who have written expressing their concerns include Professor J Stuart Elborn, President of the European Cystic Fibrosis Association and chair of the Research Committee, CF Trust, Professor Ernst Eber – Head of the Paediatric Assembly of the European Respiratory Society, Professor Sven-Erik Dahlén – Director of Karolinska Institutet, Matthew Reed, chief executive, CF Trust, Neil Churchill, chief executive, Asthma UK, Fiona Copeland, chair, PCD Family Support Group, Robert Meadowcroft, chief executive, Muscular Dystrophy Campaign.
Letters are available on the Trust’s website http://www.rbht.nhs.uk/about/safe-and-sustainable/support/
On March 8 Royal Brompton staff read in the latest Safe and Sustainable newsletter that:
“In this newsletter you will find information on a public engagement exercise being held by London Specialised Commissioning Group on the possible closure of the paediatric intensive care unit at the Royal Brompton Hospital. The SCG will be encouraging you to submit your views if you have an interest in paediatric intensive care services or paediatric respiratory services at the Royal Brompton.”
The Trust has been approached by LSCG about this engagement exercise but it has not yet started. We have been told the JCPCT will take its findings into consideration before deciding on the future of children’s cardiac services.
6 Dismantling expert teams
The successful treatment of children’s heart surgery patients depends on a large team of people who cannot simply be moved and whose integrated working practices would be lost if dispersed. There are dedicated:
- fetal cardiologists who make the diagnosis antenatally so the case can be planned with the parents (five at Royal Brompton)
- paediatric cardiologists
- paediatric anaesthetists
- paediatric intensivists who run the PICU
- perfusionists who manage the oxygenation on bypass
- Intensive care nurses
- paediatric physiotherapitsts – vital in weaning babies who have difficulty breathing
If teams like this are dispersed, recreating them elsewhere will involve a steep learning curve. The proposal for a three centre network would prevent the need for this and would, on the contrary, build on the success of established working practices.
7 The research question
Our respiratory teams undertake groundbreaking research into important areas such as cystic fibrosis, severe asthma, lung disease, inflammation of the airways and neuromuscular conditions. The research they undertake can only be carried out at a specialist hospital, where the combination of clinical expertise, the type of patients seen and the number of patients seen, provide the necessary conditions. Without a children’s intensive care unit and on-site anaesthetists, Royal Brompton hospital will not offer the type of specialist respiratory care it does now and its respiratory consultants say they will therefore seek work elsewhere. As a result, the expert teams that are responsible for both clinical care and research programmes will be broken up.
Royal Brompton specialists also care for children with serious neuromuscular conditions such as Duchenne muscular dystrophy. Years ago children with these diseases would die before reaching adulthood, but breakthroughs in research now mean that this is not the case. Having the care for both child and adult patients with neuromuscular diseases under the same roof is viewed as being extremely helpful by Royal Brompton clinical teams, who often collaborate on joint research programmes and on care plans.
Royal Brompton’s research collaborations cross international boundaries and were rated in the top three most highly cited health research teams in Europe for cardiac, cardiovascular and critical care, with Imperial College. http://www.rbht.nhs.uk/research/overview/bibliometric/
Cardiovascular disease: Top five organisations measured by their share of Highly Cited Publications
Imperial College London
Royal Brompton & Harefield Hospitals NHS Trust
University College London
St George's Healthcare NHS Trust
University of Oxford
Respiratory disease: Top five organisations measured by their share of HCPs
Imperial College London
Royal Brompton & Harefield Hospitals NHS Trust
University of Southampton
Southampton University Hospitals NHS Trust
University College London*
References: 1. RAND Working Paper - Bibliometric analysis of highly cited publications of health research in England 2002-2006. Van Leeuwen T, Grant J, Chonaill S. RAND. February 2011.
The Trust’s two Biomedical Research Units (run jointly with Imperial College) were awarded £20 million funding earlier this year. The cardiovascular BRU incorporates leading facilities for cardiac imaging, interventional cardiology and genetics. Much of the cardiovascular BRU’s research focuses on heart regeneration, aiming to increase understanding of poor heart function in those living with cardiomyopathy, arrhythmia, coronary heart disease and heart failure. This includes looking at new heart treatments using genes, imaging techniques, stem cells, tissue engineering and devices.
For further information:
Jo Thomas, Director of Communications and Public Affairs
0207 351 8850/ 07813 025256
Jessie Mangold, Head of Media Relations
0207 351 8672/ 07866 536345
Minutes of the Great Ormond Street Hospital management board held on 18 February, 2010
Minutes of Great Ormond Street Hospital management board meeting 18 Feb 2010
OPD refers to outpatients