24 August 2011
Results from 75,000 responses to the public consultation on “Safe and Sustainable: Children’s Heart Surgery in England” were released today.
Among the responses to the recommendations to reduce the number of centres providing children’s heart surgery from 11 to six or seven were numerous from well-known charities, parent groups and others expressing concern over the consultation process, the proposal to discontinue the services at Royal Brompton Hospital and about how, if this does happen, the other centres will cope with the increased capacity.
The recommendations, which were agreed by a Joint Committee of Primary Care Trusts, include reducing the number of centres in London from three to two. The preferred option is to close Royal Brompton’s children’s heart surgery services, despite its excellent record and despite it being of the required size to deliver the best possible care.
Royal Brompton Hospital has challenged the legality of the consultation claiming that the recommended options put to the public are fundamentally flawed. The challenge goes to judicial review later in the year.
Read extracts below from the responses contained in the report by Ipsos MORI, independent research consultants:
"Having read the consultation document we are concerned about the proposals to close the paediatric congenital heart services at the Royal Brompton because of the impact that this will have on the paediatric intensive care unit (PICU) and in turn the respiratory unit.
"There are 932,000 children with asthma in England and 47,000 have severe asthma. Severe asthma can be a very debilitating condition and those with severe asthma need access to quality care from specialists. The Royal Brompton respiratory service provides this specialist support for children with severe asthma and it is one of the best regarded providers of specialists respiratory support in the UK.
"…we would urge you to re-examine the proposals contained in the consultation with regard to the implications that the closure of the paediatric congenital heart service and the PICU will have on the respiratory service at the Royal Brompton. In addition we ask that people with asthma are engaged from the start in consideration of any such proposed services changes."
"…we believe it is essential that the final proposals ensure that sufficient care and consideration is given to the other hospital services connected to these centres.
"There is a potential for these changes to negatively impact upon the provision of paediatric intensive care…Reconfiguration of the current centres to remove children’s heart surgery from some centres could therefore result in a reduction of paediatric intensive care provision. Indeed, the analysis in the consultation document of this risk suggests that some paediatric intensive care units would become unviable."
"We are however very concerned that the children’s congenital heart services could be made safe and sustainable at the expense of making paediatric Cystic Fibrosis care unsafe and unsustainable given the apparent lack of attention to the impact on co-dependent services.
"We have not seen evidence to suggest that the review has taken account of the impact of the proposed changes on the interdependent services, and therefore of Cystic Fibrosis in England.
"Cystic Fibrosis services require robust arrangements for regular anaesthetics to support routine procedures such as the installation of venous access devices, bronchoscopies and gastrostomies, and occasional access to PICU. In all four consultation options the reductions in anaesthesia and PICU capacity at hospitals with key children’s Cystic Fibrosis services is alarming.
"The Safe and Sustainable review has the potential to destabilise Cystic Fibrosis paediatric care in the UK, with the inevitable detrimental impact that this will have on both the quality and life and life expectancy of children with Cystic Fibrosis. We are particularly disappointed that no alternative and improved model of Cystic Fibrosis service delivery in London has been presented in the event that the Royal Brompton Hospital Cardiac Surgery Service closes with the resulting closure of PICU and paediatric anaesthetic services."
“However, we are concerned that this consultation process has not fully considered the impact that it will have on other specialist cardiac services and not properly demonstrated the potential domino effect this could have on wider services within the hospitals. This includes how this could impact on the specialist inherited cardiovascular disease services that have now been established. We welcome the fact that this has recently been acknowledged (June 24th) in the case of the Brompton and is now being reviewed before final decisions are made this autumn.
"The NSF Chapter 8 document highlighted the need for specialist adult cardiology services for inherited cardiac conditions. Within these services there is a natural progression for a family identified with an inherited conditions that may include children also requiring assessment. These services are not mutually exclusive. One of CRY’s most important principles is that the family with an inherited condition should all be screened together and it is CRY’s experience that families are willing to travel great distances to be seen quickly by experts as a family unit."
"S&S has referred at all times to paediatric cardiac surgeons when they are actually congenital cardiac surgeons. There is practically no cardiac surgery performed on a GUCH other than that performed by those being referred to as paediatric cardiac surgeons. It is also strongly argued that there should be none. It is therefore the case that by closing a paediatric cardiac surgical centre, the GUCH surgery would also cease.
"It is however of paramount importance that the failure of this process to consider a congenital service rather than a paediatric service is corrected and at the very least a full consideration is given to the effect of any centre closing on both GUCH and other services not considered by Safe & Sustainable. It is also very important that consideration is given to a congenital cardiac transplant service which whilst surgery has not been addressed."
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"We are also concerned that Safe and Sustainable has failed to provide evidence to support the creation of 3 very large unites, i.e. Birmingham, GOS and Suys/Thomas where the expected number of procedures would rise to circa 700/800 per annum. This raises considerable anxietieis about the ability of these 3 centres to maintain high quality services sensitive to the needs of patients and their families. This would also put enormous pressure on each centre’s Paediatric Intensive Care Units leading to frequent cancellations at peak periods.
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"For these reasons, we support the retention of 3 centres in London ensuring the continuation of the world class service at the Royal Brompton Hospital."
"Dr Kate Grebenik represented ACTA on the steering group for 'Safe & Sustainable Paediatric services'. Kate believed that too many important steering group decisions were made outside the committee and she was the only steering group member who was unable to endorse either the process or the proposed options primarily due to concerns about transparency. In particular, weighting attached to individual standards and potential options for reconfiguration were both decided outside of the steering group. Donna Greenhalgh (ACTA Secretary) wrote to Patricia Hamilton expressing ACTA’s concern about the lack of transparency in the process in February but has yet to receive a reply (copy of letter enclosed)
"Having consulted linkmen in all paediatric units, the ACTA Committee believes that ....
3. Some rationalisation of paediatric services may be required - but the need for reduction to six or seven centres is unproven.
4. Reduction to six-seven centres will cause major capacity problems and necessitate considerable additional investment in surviving centres."
"This response is a collective response from parent representatives based on those who were part of the SE zonal group. Some parents represent surgical centres while others are independent, but include parents with many years working with charities related to children’s heart services. The views expressed in the document have arise through the interactions and discussions related to the Safe and Sustainable review. They are not necessarily the views of individual charities represented by some of the parent representatives.
"The names and affiliations of the parent representatives are listed below:
Geoff Baldwin (Brompton Fountain)
Jo Wilson (ECHO)
Jenni Williams-Street (Independent representative of GOS)
Hazel Greig-Midlane (Independent parent representative)
Maria Amasanti (Independent representative of GOS)
The SE Network
"Given that the participants in this work all have experience of London based centres it was inevitable that there has also been discussion around the SE network and how this may best be delivered. During the review process, the members of the SE regional group engaged in a great deal of constructive discussion around a proposal for a single London network. The parent representatives were disappointed that this vision was not translated into a proposed service configuration. As a result the consultation process has been highly divisive and it is regrettable that this is not beneficial for the provision of the service going forwards.
"There are a number of contentionus issues around the choice of centres in London and the decision to recommend two centres. We do no wish to elaborate on these points here, but rather would like to consider some of the positive outcomes that we felct could be of benefit if a single SE network configuration were to be pursued further.
"A single network operating across 3 sites with around 500 cases each offers the benefits of a larger centre, without the risks associated with becoming too large."
"The Paediatricians in East Kent support, in principle, the development of a smaller number of specialist centres, but there is significant concern that two surgical centres may not have the capacity in the region to provide good quality care for children with congenital heart disease. We also have concerns that two centres may not have the capacity to maintain the existing outreach clinics, currently provided by Evelina Children’s Hospital and the Brompton."
"Our Women & Children’s Division which includes a high risk fetal medicine service as well as a level 3 NICU has had a long standing relationship with the Royal Brompton Hospital which is where the bulk of our cardiac surgical patients have been referred and have received excellent care.
"We would like to emphasis our strong support to retain the Royal Brompton Hospital as a paediatric cardiac surgical centre."
"6.1 For the reasons set out above, it is in our view clear the services currently provided to paediatric CF patients at the Royal Brompton Hospital could not continue to be provided safely in the event that the PICU were to close.
"6.2 We have seen no evidence which confirms that closure of the PICU and the downstream impact of that closure would not have a disruptive effect on the various CF-related clinical trials programmes with which the Royal Brompton Hospital is involved. Should such disruption delay the introduction of new therapies then it will inevitably lead to patient outcomes which are not as good as they would otherwise have been. This too is therefore an issue of safety.
"6.3 We have seen no evidence that the lack of safety identified in the preceding two paragraphs could be mitigated properly by the provision of additional resources: we do not see how it could, since the fundamental issue is whether the back-up interdependent services (specifically PICU and anaesthesia) would be available on site to allow the current level of respiratory services safely to be provided.
"For each of us, the only ray of light in our lives following the diagnoses of our respective children was the knowledge that they were to be treated by the Royal Brompton Hospital. Despite this, we wish to stress that our sole interest is to preserve the quality of care for all patients suffering from CF (including our children) and to ensure that the optimum quality of care is provided in the future. We are not wedded to the bricks and mortar of the Royal Brompton Hospital, and do not for one moment suggest that it should be treated as a 'sacred cow'".
Bridget & David Turner; Catherine & Julian Sheahan; Joanne Hilditch; Mark Arnold; Aline & Nigel Black; Mark Dujardin
"I am writing on behalf of the Ben Williams Trust, a charity that supports the development of excellent paediatric cardiac electrophysiology services. We believe that there are factors fundamental to the continued provision and development of such services in London that are not addressed by the Consultation Document. Paediatric Cardiac Electrophysiology is a specialist and little understood discipline within the already specialist field of Paediatric Cardiology and we believe that the treatment of children and adults with arrhythmias (abnormal heart rates) requires special consideration, particularly given the risk of sudden death associated with these types of condition.
"Should the decision be made to close paediatric cardiac surgery at the Royal Brompton, the impact on the paediatric cardiac electrophysiology service will be severe:
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The Paediatric Intensive Care Unit will no longer be viable (Page 105)
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All but the simplest non-surgical interventions require the availability of the PICU in the event of an emergency, and therefore would not longer continue. The type of intervention that would have to stop would for example include non-surgical closure of holes in the heart
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The benefits of joint paediatric adult service linkage would be lost
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The foetal cardiology service and associated research would no longer be sustainable, with subsequent knock-on impact on paediatric and adult electrophysiology and congenital heart services."
"The proposal to move to two London centres does not appear to fit clearly with the evidence provided in the review, nor are the options being proposed for consultation clearly set out…
The option of two federated teams working from three sites is not sufficiently explored. This option offers these potential advantages:
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Retaining service accessibility
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Maintaining important relationships with other services at the three centres
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Rationalising teams from three to two, thereby increasing team quality, but still utilising the capital infrastructure at three sites.
"We do not support the proposal to move to two centres providing services in London, for the following reasons:
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There appears to be no clear clinical justification for choosing between the centres. All of the three centres (Evelina - Guys & St Thomas’s, Great Ormond Street and Royal Brompton & Harefield) currently deliver excellence in clinical services and outcomes. We note that Royal Brompton and Harefield was ranked joint fourth out of eleven (joint ranking with Great Ormond Street) in the pre-consultation business case analysis conducted by the NHS National Specialised Commissioning Team.
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Continuity of care is vital for children undergoing heart surgery as they grow older. The Royal Brompton & Harefield provides a lifelong service for children with congenital heart disease.
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Alternative approaches for increased collaboration between London centres have not, in our view, been adequately explored. In 2009, the Royal Brompton & Harefield NHS Trust developed proposals with Great Ormond Street to establish a National & International Service for Children with Heart & Lung Disease’. This outlined a vision for an international benchmark Children’s Heart & Lung Service in the UK."
"Matters of capacity at other centres is an important issue – we remain unclear as to where the Royal Brompton’s young cystic fibrosis patients would be treated should their unit be closed.
"The Scrutiny Committee heard of the view taken by the Greater London Assembly that the need remained for three centres in London, and to the Mayor of London having written in support of this position.
"We have serious concerns that too little thought has been given to the wider impact of this proposal on the medical and financial viability of the Royal Brompton & Harefield NHS Foundation Trust. The process seems to represent a classic top-down approach to health service reconfiguration."
"The record of public consultation on health reconfigurations in London has not always been a happy one and in particular there have been occasions when Londoners, rightly or wrongly, have felt deceived that the knock-on effects of a particular closure decision have not been spelt out and yet that have had far reaching consequences for a particular institution.
"In the case of specialist hospitals, their narrow range of services and smaller turnover can call into question their whole long-term viability. The consultation document does not make clear what assessment of this has been made in the case of the Brompton and how it has been taken into account. It would therefore be very helpful if you would share with me and all other interested parties the impact study which I assume you have undertaken to determine the effect on other services at the Brompton including the impact on the PICU, paediatric respiratory medicine and the adult congenital cardiac service."
You can also read an article by BBC News about the Ipsos MORI report.
Visit NHS Specialised Services to see the full report.
Read the background to the Safe and Sustainable review and the Trust's response to proposals to close its children's cardiac surgery service.
