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

 

(In a letter to the JCPCT on behalf of the Cystic Fibrosis Trust, Asthma UK, PCD Family Support Group and Muscular Dystrophy Campaign) 

 

We are writing to you on behalf of the charities we represent, and the current and future paediatric respiratory patients whose interests our charities serve.

 

Our charities unreservedly support the objectives of the review into children’s cardiac surgery. Like children with congenital heart diseases, children with long term, incurable respiratory diseases are amongst the most vulnerable children in the United Kingdom today. Their future life expectancy and quality of life will be influenced by the quality of clinical care which they receive as well as the quality of translational research and clinical trials work which is performed at specialist centres. Despite this, there has been no explicit assurance to date from the JCPCT that the necessary improvements to paediatric cardiac surgery services should not result in detriment to the interests of paediatric respiratory patients.

 

The Paediatric Cardiac Surgery Review and Respiratory Services

 

Because of concerns as to the consequences for the Royal Brompton’s respiratory services, and research and clinical trials work if cardiac surgery were withdrawn, you appointed a panel headed by Mr Adrian Pollitt to examine the impact which de-designation as a cardiac surgery centre would have upon the Royal Brompton’s respiratory services.

 

It is our collective view that the report of Mr Pollitt’s panel does not lay to rest those concerns. Instead, we see the Pollitt report as giving rise to a number of questions which need to be addressed and answered robustly. At the heart of those questions is a concern, which we all share, that the clinical and financial viability of the sort of changes contemplated by Mr Pollitt’s panel, and the consequences of those changes for respiratory research and clinical trials, should be established robustly before any final decision is taken by the JCPCT. The report also gives rise to concerns about clinical governance: one person’s proposal to develop clinical networks will be seen by another as promoting the fragmentation of services. We also believe that it is imperative that there is a public consultation on alternative models of respiratory service delivery before the JCPCT makes a decision which would otherwise effectively pre-empt the outcome of any such consultation.

 

We have explicitly mentioned respiratory research because it is an issue of fundamental importance to each of our charities because of the excellence of the Royal Brompton’s paediatric respiratory research and clinical trials programmes and the importance of that work for improving patient outcomes in the future. The possibility of adverse consequences for respiratory research or clinical trials programmes, which is acknowledged in the Pollitt report, is also an issue which goes to the heart of our concerns for the future sustainability of the clinical services, for the reasons explained in compelling terms by Professor Stuart Elborn of Queen’s University, Belfast in his letter to you dated 14 November 2011 (a copy of which is attached for your convenience).

 

We recognise that delivering change to NHS services is often a difficult process, as the cardiac surgery review illustrates. However, we believe the JCPCT should not shy away from asking the difficult questions which remain outstanding in relation to respiratory services at the Royal Brompton, and addressing what may be difficult answers. A failure to do so may simply result in further dispute and delay, prolonging existing uncertainty, to the detriment of both cardiac and respiratory patients.

 

Moving Forward

 

Whatever the rights or wrongs of the legal proceedings which have been brought by the Royal Brompton against the JCPCT, we believe that the recent decision of Mr Justice Owen provides the JCPCT with a window of opportunity to address the concerns of our charities and thereafter carry out the necessary consultation without that process delaying its ultimate decision in relation to cardiac surgery services.

 

We therefore invite you to provide prompt and open confirmation that the JCPCT will engage with our charities, the families of children with long-term respiratory illnesses and appropriate professional bodies such as the BTS, BPRS and ACTA to establish a consensus approach to the issues relating to respiratory services. Some of us have written separately to you setting out our concerns – for example the letter from the CF Trust to you dated 7 October 2011 outlines the sorts of issues which remain to be addressed. In addition there would be a requirement to establish the clinical desirability of the sort of centre envisaged in the 2009 collaborative report between RBHT and GOSH and – at least in outline – the timescale for delivering any proposed changes to respiratory services.

 

We recognise that on some issues the input of the London SCG and GOSH would be required. We would therefore suggest that their participation too would be an essential part of the process of engagement which we propose.

 

Quite apart from ensuring that the interests of paediatric respiratory patients are properly considered, the process of engagement which we invite is fundamentally designed to ensure that your committee is properly informed – before it makes its decisions about the reconfiguration of paediatric cardiac services – as to the consequences of those decisions. A failure to consider, still less grapple with, the issues relating to respiratory services which arise out of the Pollitt report could not, therefore, be justified.

 

Circulation of this Letter

 

So as to ensure that they are aware of the concerns of our charities, this letter is being copied to the Secretary of State for Health, Simon Burns MP (as the minister with responsibility for acute services), Paul Burstow MP (as the minister with responsibility for long term conditions), Greg Hands MP and to the members of the Health Select Committee. It is also being copied to the other members of the JCPCT, London SCG and GOSH.

 

Conclusion

 

Whilst we would also be keen to meet you in person to discuss our concerns at your earliest convenience, time is plainly of the essence and we therefore look forward to receiving by return your confirmation that the JCPCT will engage promptly in the process proposed in this letter.

Karolinska Institutet, The Centre for Allergy Research – Professor Sven-Erik Dahlén MD PhD – director, and Professor Gunilla Hedlin MD PhD – co-director

 

"It has come to our attention that major changes in children’s cardiac services have been considered that will impact on the operations of paediatric respiratory services as well. Although regional plans for health care in the UK go beyond what we can assess, we would like to provide an international perspective on the activities at The Royal Brompton Hospital and the associated academic departments of Imperial College.

 

"First, this clinic is well-established as a centre of excellence concerning lung diseases in children of all ages. The Karolinska Institute and other colleagues abroad frequently consult the hospital and its staff because of its world-leading expertise in the field of paediatric lung diseases.

 

"Second, the research that has been carried out here into common and rare diseases of childhood is equally as outstanding, and a field-leader, internationally. In this context it should be acknowledged that the research is truly translational, i.e. there is an excellent interplay between examinations of patients and the application of modern molecular techniques to further our understanding of disease mechanisms. In particular, this research has been made possible because of the perfection of long-standing techniques such as bronchoscopy whereby valuable material may be collected from patients. The results of this research has been published in numerous high-ranking journals. Our knowledge of disease mechanism in asthma and cystic fibrosis have been increased tremendously by key findings made by investigators at The Royal Brompton.

 

"Finally, when focusing is on the organisation of health care services, one may overlook the close and mutually beneficial interdependence of clinical care and the research. This means that moving certain diagnostic and therapeutic facilities to another site may have secondary and negative effects on academic research by disrupting the infrastructure necessary for scientific work.

 

"In conclusion, we hope it will be possible to find a solution to this re-organisation that will enable the internationally recognised outstanding clinical and academic work performed by the paediatric respiratory services at The Royal Brompton to continue and prosper."

Professor J Stuart Elborn – director of the Centre for Infection and Immunity, Queen's University, Belfast; president of the European Cystic Fibrosis Association; chair of the Research Committee, CF Trust 

 

(In a letter to NHS Specialised Services)

 

"I am writing to express my concerns for the impact the proposed changes at RBH will have on the research programmes in childhood lung diseases.

 

"The quality of the current paediatric respiratory research programme at RBH is outstanding. It is one of very few centres with sustained internationally competitive programmes in the UK or mainland Europe. The investigators at RBH have published primary research which has resulted in changes in medical practice and the understanding of fundamental mechanisms of chronic lung diseases. The report by the panel of independent experts chaired by Adrian Pollitt clearly articulated the potential for adverse effects on the Royal Brompton’s research programme if the PICU became unviable as a result of the cessation of paediatric cardiac surgery.

 

"This is an important issue for two reasons. The first is that high quality research improves patient outcomes. This is a well recognised phenomenon in chronic disease. The RBH has a long tradition of providing all levels of care including International referrals. This reflects the high quality of care which is both informed and also directly impacted by the high quality translational research undertaken. The second is that sustained high quality research is a key determinant of the ability of a centre such as the Royal Brompton to retain and recruit the world leading clinical and academic staff on whom its respiratory services depend. Adverse impact upon the ability of the clinical staff to carry out cutting-edge research will undermine the sustainability of the clinical services, to the detriment of its patients.

 

"I am well aware of the letter from the Cystic Fibrosis Trust to you dated 7 October 2011, to which I understand you have not yet responded. I support the contents, namely that the impact upon research at the Royal Brompton Hospital is one which requires careful consideration, and that there should be a full and proper investigation of the potential impact upon respiratory research and CF clinical trials, including Gene Therapy and small molecule treatments for CF, before your committee makes any final decision about changes to children’s cardiac surgery service.

 

"I unreservedly support the aims of the review into children’s cardiac surgery, but I urge your committee to ensure that the desired improvements for paediatric cardiac surgery patients do not adversely impact the care of paediatric respiratory patients at the Royal Brompton Hospital and do not impede the potentially life changing research at RBH."

Professor Ernst Eber – head of the Paediatric Assembly of the European Respiratory Society and head of the respiratory and allergic disease division, paediatric department, Medical University of Graz, Austria 

 

(In a letter to the JCPCT)

 

"I am writing to you because it has come to my attention that proposed changes in Paediatric Cardiac Services might also have an impact on Paediatric Respiratory Services at the Royal Brompton Hospital. I am the current Head of the Paediatric Assembly of the European Respiratory Society, the largest professional body of health care professionals dealing with respiratory disease, but with this private letter I am expressing my personal thoughts on this issue from a European perspective.

 

"Whereas I cannot judge plans for health care in the UK, I am well aware of the activities at the Royal Brompton Hospital and the associated academic departments of Imperial College (as is the vast majority of colleagues in the field). Thus, I may take the liberty of expressing my big concerns for the impact major changes at the Royal Brompton Hospital will have on research programmes in childhood lung diseases.

 

"The Royal Brompton Hospital has a long tradition of providing all levels of care, and the hospital and its staff are frequently consulted because of their world-leading expertise in paediatric respiratory medicine. This high quality of care is directly influenced by the sustained high quality translational research which not only improves patient outcomes but is also key to retain and recruit leading clinical and academic staff. The quality of the current paediatric respiratory research programme at the Royal Brompton Hospital is truly outstanding. Investigators at the Royal Brompton Hospital have published primary research which has resulted both in changes in medical practice and the understanding of fundamental mechanisms of chronic lung diseases.

 

"Removing cardiac surgical services and subsequent moving of diagnostic and therapeutic facilities to another site (i.e. shattering the infrastructure pivotal for scientific work) will without doubt have negative effects on academic research. Thus, there is a significant potential to threaten the first class paediatric respiratory research programme in the Royal Brompton Hospital, in particular, if the PICU became unviable and skilled paediatric anaesthesia became unavailable as a result of the discontinuation of paediatric cardiac surgery.

 

"In summary, it appears to be imperative that a careful consideration of the potential impact upon paediatric respiratory services of changes to paediatric cardiac services precedes any final decision to be made. I strongly urge that planning for respiratory services is done before any changes are made to cardiac surgery, as an integral part of the process of change that is desired, and not as an afterthought after the event. It takes years to build a world class unit, and all this can be thrown away very quickly if careful prospective planning is not done. I do hope that there will be a way found to ensure the desired improvements for paediatric cardiac surgery and at the same time to ensure continued outstanding clinical and academic work performed by the paediatric respiratory services at the Royal Brompton Hospital, but it is inconceivable to me that this last can be achieved without PICU and paediatric anaesthesia. In saying this, I write as the division chief of a tertiary level respiratory unit in Austria."

Professor Francis Fontan MD – honorary professor of cardiac surgery, University of Bordeaux, France, founding father and first president of the European Association for Cardio-Thoracic Surgery and pioneer of the Fontan procedure

 

"I am one of the fortunate cardiac surgeons who had the chance to know the activity and the surgeons at Royal Brompton Hospital for decades, since the 1970s. I cannot imagine that this department could threaten to disappear. The international community of paediatric cardiologists and paediatric cardiac surgeons, indebted to Brompton, could not understand such a disappearing.

 

"The remarkable work and tuition coming from Royal Brompton, including those delivered year after year in the setting of the annual meeting of the European Association for Cardio-Thoracic Surgery, have made of “The Brompton” in its departments of paediatric cardiology and paediatric cardiac surgery the typical English institution, a reference for everyone all around the world."

Eduardo da Cruz MD – professor of paediatrics, paediatric cardiology and intensive care and head of the paediatric cardiac critical care programme at Children’s Hospital, Colorado USA

 

"I would like to energetically support the programme of paediatric cardiology, cardiac surgery and intensive care at Royal Brompton Hospital that is currently under threat of being lead to closure with the consequent break-up of the expert teams of people who deliver care in this institution.

 

"Although I understand the need to centralise such specialised care in the London area, I want to bring up the fact that this is one of the largest centres for the surgical treatment of congenital heart disease in Europe, with a world-wide reputation of excellence, based on the outstanding mortality rates and outcomes, and the prolific academic and scientific productivity.

 

"Closing this programme would affect the local population well beyond cardiac patients though, as I believe that this decision would also affect other paediatric services, and namely anaesthesiology and respiratory sections that are also a gold standard. The impact of this measure in the British population of children with congenital or acquired cardiac disease as well as adults with congenital heart disease (with which this centre is also a reference with the highest standards of care) would be extremely negative and regrettable.

 

"The international community dedicated to the care of such patients is under shock with this decision as there is no clear understanding of the need to disrupt a network of care that not only functions well, but also is seen as an example, and a source of inspiration.

 

"On a personal note, I particularly wish to support the many excellent health professionals at Royal Brompton Hospital, who lead important initiatives in the clinical and academic field of paediatrics, and have developed some of the best medical programmes in the world over decades of hard and committed effort.

 

"I therefore make a plea for the reversal of such a decision, both personally and on behalf of the Working Group of Paediatric Cardiac Intensive Care of the Association for the European Paediatric Cardiology (which I founded and co-chair) and of the Congenital Domain of the European Association for Cardio-Thoracic Surgery (of which I am a board member and intensive care representative)."

William G Stevenson MD – senior physician at Brigham and Women's Hospital and professor of medicine at Harvard Medical School, Boston USA

 

"I am distressed to hear that the congenital heart disease programme at Royal Brompton Hospital is under threat to be closed.

 

"This internationally recognised programme has long been a leader in the field and has made a series of contributions to the dramatic improvement in survival and outcomes of patients with congenital heart disease.

 

"It seems particularly unfortunate, coming at a time when the large number of patients surviving to adult age with congenital heart disease. We all recognise that centralised care in specialised centres is needed to provide optimal care of these patients and continue the research that is needed to continue to advance their care and keep them out of the hospital. These efforts would be seriously adversely affected by the loss of the Royal Brompton programme.

 

"I sincerely hope that it will not be lost to the world."

William C L Yip MD - adjunct professor, National University of Singapore, consultant paediatric cardiologist, Gleneagles Hospital, Singapore, chief of congenital heart disease in children and adults, JPMC Cardiac Centre, Brunei Darussalam, and director, International Child & Adolescent Clinic, Singapore

 

"There are three reasons that paediatric cardiac surgical service should not be removed from Brompton:

1. It is serving the needs of Londoners and beyond well because of the good track record of its surgical outcome, which is better than the national average.

 

2. From the statistics, reduction of paediatric cardiac surgical service to just two centres is not practical and is likely to have bad consequences. The surviving two centres are not likely to cope well with the workload and the additional physical space required to take on the extra patient load. The waiting may become unduly long. Furthermore, the cost to expand the service in the other two centres may be more than the cost of maintaining the service in Royal Brompton. Indeed the waiting time for surgery in UK is already rather long compared to that in Singapore.

 

3. It is easy to demolish, but a lot more difficult to build a service of such reputation and history as that in Royal Brompton. The excellent research in cardiac and lung diseases in children and adults is the pride of British medicine. Removal of paediatric cardiac surgical service will severely cripple it. The damage may be irreparable. 

"Many overseas cardiologists, pulmonologists, cardiac surgeons and cardiac and pulmonary pathologists benefit from the wealth of research materials in Brompton over the years. The leadership and excellence in British medical research in paediatric cardiology, pathology and pulmonology will suffer if the cardiac surgical service can no longer support and play a major role in the integrated research projects in Brompton.

 

"I sincerely hope that paediatric cardiac surgical service remains as an important component of the great Brompton medical service and research in heart and lung disease in children."

Professor Gaetano Thiene – professor of pathology and consultant in cardiovascular pathology, department of medical diagnostic services and special therapies at the University of Padua Medical School, and patron of CRY (Cardiac Risk in the Young) in the UK

 

"The news that children’s heart services at Royal Brompton Hospital will be dismissed is shocking. Paediatric cardiology at Royal Brompton is a leader in the world, both for diagnosis and treatment, and it is an international referral centre for education and professional training. It has played a fundamental role in the knowledge of clinical and surgical anatomy of congenital heart disease, and it is still 'la Mecca' for Western as well as Third World countries.

 

I was educated and worked at Royal Brompton in the '70s-'80s, when it was academically connected with the Cardiothoracic Institute, now Imperial College. It would be sad to waste such a cultural and professional treasure."

 

Professor Brigitte Stiller – medical director of the Clinic for Congenital Heart Defects / Paediatric Cardiology at the Centre for Paediatrics and Adolescent Medicine, University Hospital Freiburg, Germany

 

"To me it is still unimaginable that the well known and famous children’s services at the Royal Brompton Hospital are under  this kind of threat. The political decision is a big mistake and I am sure that the results will last for decades, if they realise the break-up of the expert teams of people in your clinic. Children, especially those with chronic disease like congenital heart defects urgently need centres like Royal Brompton.

 

Since the vast majority of our patients survive to adulthood, large centres for the surgical treatment of congenital heart disease with combined adult and child programmes are a necessity for these families. Your centre is one of the best in these combined treatment, has a good number of trained cardiac surgeons, and excellent results.

 

Your hospital and associate academic and teaching programmes are internationally important and your excellent linked research programmes are well known.

 

I can not imagine that the closure of this exemplary clinic will make any sense regarding the community, the patient care or financial aspects. To my opinion this shortsighted decision should be revised."

Patrick M Kochanek, MD – professor and vice chairman, department of critical care dedicine; professor of anaesthesiology, paediatrics and clinical and translational science; director, Safar Center for Resuscitation Research, University of Pittsburgh School of Medicine; editor-in-chief, Pediatric Critical Care Medicine

 

I wish "to provide the strongest possible level of support for the paediatric cardiac surgery program at the Royal Brompton & Harefield NHS Foundation Trust. As a professor of critical care medicine, anaesthesiology, peadiatrics, and clinical and translational science at the University of Pittsburgh School of Medicine for 25 years and editor-in-chief of the journal Pediatric Critical Care Medicine for 11 years – the journal of both the Society of Critical Care Medicine and the World Federation of Pediatric Intensive and Critical Care Societies, I have come to develop a great appreciation for the international reputation of the program at Royal Brompton and its esteemed faculty.

 

It is a fact that faculty from the hospital have played an instrumental role in unifying the field of paediatric cardiac intensive care worldwide. They have also contributed enormously to the development of the science of paediatric cardiac intensive care. As a tangible example of the academic excellence of Royal Brompton's program, Dr Duncan Macrae is one of only two associate editors for the field of paediatric cardiac intensive care for our journal, and represents the entire international paediatric critical care medicine community in that role. 

 

The dismantling of the Brompton program would represent an important loss of an iconic institution in the field and negatively impact the care of infants, children, and adults with congenital heart disease both in the UK and worldwide."

Professor Alain Fraisse MD – paediatric cardiologist, department of paediatric cardiology, La Timone Children's Hospital, Marseille

 

"I have been very surprised to learn that the paediatric cardiac surgery  programme at Royal Brompton Hospital may potentially close, based on this rather intriguing process in the UK named 'Safe and Sustainable'.

 

First, I can understand the rationale to close some small surgical centres with low efficiency. However, this is certainly not the case of Royal Brompton Hospital since this hospital and associate academic and teaching programmes are internationally important. Moreover, I know from our former surgeon Olivier Ghez that the results in terms of post-operative mortality are among the best in Europe.

 

Second, beside the consequences in term of patient care in the UK, closing the congenital cardiology programme at Royal Brompton would be sad news for us. Indeed, Royal Brompton is among the best centres in Europe for fellowship and we have, in 2011 alone, two of our best fellows training in their centre: one in the adult congenital heart disease unit and the other in congenital MRI. Moreover, the interactivity we have between our centre in Marseille and their institution through our monthly videoconferences is extremely stimulating.

 

I hope that such process is not definitive and we will be able to continue our international collaboration with Royal Brompton's congenital surgical programme."

Professor Natesa G Pandian MD, FACC – professor of medicine, Tufts University School of Medicine; senior consultant and director, Heart Valve Clinic; director, Cardiovascular Ultrasound Research; co-director, Cardiovascular Imaging, Tufts Medical Center, Boston, USA

 

"I am shocked to learn that there are considerations of terminating pediatric cardiac surgery services and compromising pediatric and adult congenital heart disease (CHD) services at Royal Brompton Hospital. The CHD program at Brompton has been a shining center of excellence in patient care, research and education for many decades. This outstanding program has cared for thousands of patients in UK and taught countless number of physicians and surgeons across the world.

 

From my medical college days in India and a long academic career in the US, I have learned and continue to learn a great deal from the body of innovative work performed at Royal Brompton. Building on the immense contributions of the past, the pediatric and adult cardiology and surgery sections there continues to remain on the cutting edge of medicine thanks to the ongoing contributions of the remarkable faculty and consultants currently serving there. Any compromise of such a department would be a real loss not only to UK but also to the global cardiology community.

 

I strongly plead that the thoughts of closing the CHD services be reconsidered and replaced by ongoing support to this outstanding  program."

Professor Simon Attard Montalto – chairman, Department of Paediatrics, Division of Health, Malta, and academic head, Paediatrics, The Medical School, University of Malta

 

"I have followed the issue relating to the Royal Brompton Hospital with interest and dismay: the former since we have excellent links and utilise international services from the Brompton on a regular basis; the latter since there appears to be the suggestion that this excellent institution might cease to exist!

 

I would like to document that the Paediatric Department in Malta has forged excellent clinical links with the Royal Brompton spanning a period of almost two decades. This has entailed referrals of Maltese children for specialist investigation and treatment to the Brompton on a regular basis, as well as a visiting outreach consultant clinic in cardiology carried out by senior Brompton staff in Malta, again on a regular basis. More recently (over the past six years or so) we have extended this link to twice-yearly visiting consultant clinics in both paediatric and adult respiratory diseases, often combined with evening postgraduate teaching lectures.

 

All of the above have provided an excellent service to the local population and all have continued to expand, both in terms of numbers of patients seen and investigative/interventional input (including secondary referrals to London for further assessment/treatment/surgery from the Malta clinic).

 

There is absolutely no sign of this service (and, indeed, the need for this service) diminishing in any way. On the contrary it is set to continue to grow! To this end we would have no cause to break our established links with the Brompton. I can only reiterate that the Brompton has and continues to provide a superb service and one that is not bettered by other august institutions (we share care for other sub-specialities with at least 12 other centres of excellence in the UK – the best of these offer an equally good service but none are superior to the Brompton!).

 

I would strongly support, without any reservations, any initiative that ensures that the Brompton and the services that it offers internationally will continue to flourish."

Iki Adachi MD – congenital heart surgeon, Texas Children's Hospital, USA

I worked in Royal Brompton Hospital's cardiac morphology unit several years ago as a research fellow. This experience gave me a fundamental knowledge about cardiac morphology of congenitally abnormal hearts, which is indispensable for congenital heart surgery.

 

Many of the congenital heart surgeons in the world, especially the young generations like me, have been learning cardiac anatomy from this morphology unit through its articles, textbooks and lectures. The influence the unit has in the field of congenital heart surgery is huge.

 

Since the morphology unit has a direct and close association with the clinical service, the "morphology" the unit provides is always up to date and hence relevant to the clinicians. Given the huge influence of the morphology unit, the loss of paediatric cardiac surgery will certainly have implications not only for Royal Brompton itself but for the field of congenital heart surgery in the world.

 

I hope that the surgical service is kept open so that the tight band between the morphology unit and the clinical service remains.

Dr Maria Michelagnoli – paediatric and adolescent oncologist, London sarcoma service

 

"I am writing in my capacity as the lead for paediatric bone sarcoma within the London sarcoma service. The London sarcoma service is the only service for bone tumour management recognised by the London specialised commissioning team for London and the South East of England.  Approximately 20% of children presenting with bone sarcomas have pulmonary metastatic disease.

 

I am writing to express my major concern at the implication of the loss of Royal Brompton Hospital PICU services for paediatric thoracic sarcoma surgery management.

 

Currently Mr George Ladas and Mr Simon Jordan are essential members of the extended multi-disciplinary team for paediatric sarcoma (a seamless service with adult sarcoma in the London sarcoma service). The sarcoma pathway involves a weekly VTC (UCLH, Royal Brompton Hospital, Royal Marsden Hospital) specifically to manage thoracic sarcoma. All new and relapsed patients with primary and metastatic sarcoma in the thoracic space are evaluated for the appropriateness of thoracic surgery, and clinical management plans facilitated. The smooth pathway involves Royal Brompton's state-of-the-art thoracic imaging, rapid access consultations in outpatients, rapid access or elective surgery and good cooperation for transition back to oncology supervision. However, the safe clinical management of these patients requires the support of the PICU post-operatively.

 

The practice has always been timely, expertly handled and collaborative. To my knowledge there have been no clinical governance issues raised. Patients express their satisfaction with the collaboration.

 

Therefore, I am very concerned that this important cohort of patients has not been factored into the consultation about  PICU cardiothoracic services. I would therefore request that the PICU support continues to be provided at the Royal Brompton site."

Gary Webb MD – Cincinnati Adolescent and Adult Congenital Heart Disease Program, The Heart Institute at Cincinnati Children's Hospital Medical Center

 

"As the director of the Cincinnati Adult Congenital Heart Disease (ACHD) Program, and former director of the Toronto ACHD Program, and founder and inaugural president of the International Society of Adult Congenital Cardiac Disease, I wish to provide an unsolicited comment on the international status and roles of the Royal Brompton Hospital and its renowned congenital heart disease team. 

 

The strength, commitment and multiple contributions of the institution go back to the 1950s when Dr Paul Wood established some of the key principles for life-long follow-up and treatment of congenital heart disease.  His textbook “Diseases of the Heart and Circulation” remains one of the classic publications in the field. The Royal Brompton Team (and in particular Dr Shinebourne and Professors Anderson and Ho) in subsequent years was instrumental in establishing the common language in describing congenital heart defects and the spectrum of disease. Following the legacy of Paul Wood, Dr Rigby and Professor Redington were leaders in describing integrated physiology and its application in the congenital heart disease field. Major advances in surgery also originated from this Institution. Professor Sir Magdi Yacoub practised at the Brompton. Following the closure of the National Heart Hospital, the Royal Brompton Hospital benefited from additional expertise, including my senior colleague Professor Somerville, who has been a national and international advocate for the needs of the patient with ACHD (also called GUCH “Grown-Up Congenital Heart”).

 

Since Professor Somerville’s retirement, the team has expanded under the academic leadership of Professor Gatzoulis and now consists of five consultant ACHD cardiologists - a clear indication of the commitment of the Trust towards this expanding cardiovascular field.

 

Furthermore, the Royal Brompton has made additional investment in cardiac imaging (including MRI), ACHD cardiac surgery and more recently in electrophysiology (with magnetic navigation). The clinical results of the ACHD group I understand to be excellent, and the Royal Brompton is one of the national and international referral centers for even the most complex forms of congenital heart disease. The Royal Brompton group’s academic contributions have been equally important: the group has published a remarkable number of high-impact papers, including more than 30 full papers in Circulation; trained more than 80 national and international fellows who now practice ACHD in the UK and overseas; and the members of the Royal Brompton ACHD team are consistently present as keynote speakers at national and international meetings or have served in recent years as visiting professors in some of the most esteemed universities around the world. 

 

In summary, I would consider the Royal Brompton ACHD Group as one of the top three ACHD groups in the world, in terms of its clinical excellence, academic contributions and training and educational opportunities.  In my opinion, it has accomplished more in the last decade than any other center in the world.

 

I understand that there is a national process and review of pediatric cardiac surgical services and that the review represents a threat to the congenital heart services at the Royal Brompton & Harefield NHS Foundation Trust. Such a possible action would be unimaginable for those of us in the international ACHD community, as it would jeopardize a world leader in the field, having an adverse impact on both patient care and the ongoing development of the specialty, not only at national, but also at a global level. There is no doubt, that if paediatric cardiac services are affected and removed from the Royal Brompton, that ACHD care and the Royal Brompton’s national and international leadership would be compromised. 

 

This is, therefore, my plea to reconsider the proposed options, so that this British flagship institution continues uninterrupted its important role towards advancing of the care of all patients with congenital heart disease and improving our understanding and treatment of their condition."

Professor Dr Dirk Vlasselaers – leading consultant paediatric intensive care unit, University Hospitals Leuven, Belgium

 

"A paediatric cardiology department, taking care of the sickest children, requires a highly skilled professional staff of doctors involving many different medical specialties, well trained and dedicated nurses and many other caregivers. It takes years to build an excellent team and it requires many efforts to keep this team updated on a permanent basis. Furthermore, a paediatric cardiology service is also important to support other medical specialties and therefore, is imperative in a tertiary referral hospital.

 

"The paediatric cardiology service at the Royal Brompton Hospital, London, UK, including all the necessary subspecialties in the broad field of paediatric cardiology, has an excellent reputation worldwide. Many doctors around the world, working in the field of paediatric cardiology (cardiologists, intensive care physicians, cardiac surgeons, anaesthesiologists) were trained at this institution.

 

"Breaking up this expert team of people would mean an absolute loss of expertise and quality of care. The current plans would mean a substantial devaluation of the quality of care in a great area for the sickest children."

Professor Sir Christopher Edwards – chairman, Chelsea & Westminster NHS Foundation Trust

 

"Chelsea and Westminster Hospital NHS Foundation Trust is strongly supportive of the position taken by the Royal Brompton & Harefield NHS Foundation Trust in connection with the review of paediatric cardiac surgery.

 

"Chelsea and Westminster has close links with the Royal Brompton Hospital and has concerns that the closure of paediatric cardiac surgery would have much wider consequences not only for other services at the Royal Brompton but also for other hospitals such as ourselves – and so for the care of sick children in West London.

 

"Much greater consultation, thought and analysis is necessary before any decision can be taken.

 

"We hope that the application for judicial review will act as a catalyst for this more considered approach."

Professor Sir Magdi Yacoub - professor of cardiothoracic surgery at the National Heart and Lung Institute, Imperial College London and director of research, Harefield Heart Science Centre

 

"I have had the distinct privilege of working at the Royal Brompton & Harefield NHS Foundation Trust for over 30 years. I have witnessed first hand the extreme dedication of the staff and the quality of the service to children, adolescents and adults. This has evolved over many years to reach such a level of excellence which I feel, must continue and project into the future.

 

"Many innovations and concepts have evolved from this centre including the concept of caring for grown-up congenital heart patients (GUCH). Ideally GUCH should be delivered by the same institution, specialised in caring for infants and children with cardiac conditions, thus ensuring continuity.

 

"It is my firm belief that centres of excellence such as the paediatric unit at the Royal Brompton & Harefield NHS Foundation Trust are irreplaceable and, therefore, should be preserved for the benefit of the community, both nationally and internationally."

Navin C Nanda MD – distinguished professor of medicine and cardiovascular disease, and director, Heart Station/Echocardiography Laboratories, University of Alabama at Birmingham

"If this is closed down, it would be a disservice to the patients and also to their parents ... I strongly support keeping the program intact and not closing it down."

Greg Hands - MP for Chelsea and Fulham and parliamentary private secretary to the chancellor of the exchequer

 

"I was very impressed with what I saw today. I was obviously aware that Royal Brompton offers specialist care for those with heart and lung conditions, but I found meeting patients and their families very informative and incredibly moving. I was only up on the wards for half an hour but even in that time was struck by how well everything seemed to be organised, and how highly parents spoke of the treatment their children receive. Being invited to see the work of NHS centres of excellence such as Royal Brompton is always a pleasure, and I look forward to my next visit.”

 

(said during a visit to Royal Brompton's PICU in April 2011)

Baroness Shreela Flather, of Windsor and Maidenhead - cross-bench, life peer

 

"I have a beautiful healthy granddaughter who is now 19. When she was six she had open heart surgery at the Royal Brompton and there is no doubt in any of our minds that had she not had that operation she would not be with us now. It was such a wonderful thing to see her recover and grow into this lovely healthy young woman. I too have been a patient at the Royal Brompton for a number of years and have received superb care. I believe that without that care I too would probably not be alive and doing as well as I am at 77. 

 

I will always be grateful for the life that was given to my granddaughter and I am utterly shocked at the idea that the children’s unit might be taken away from the Brompton. I am sure there are countless other parents and grandparents who feel exactly the same way as I do when they see their children and grandchildren whose lives have been saved at the Royal Brompton. I will do whatever I can to campaign for saving the children’s unit not only because of my own granddaughter but for all the other parents and grandparents."

The Earl Howe - parliamentary under secretary of state (Department of Health)

 

(discussing the e-vent initiative during a visit to the hospital in January 2011)

 

"This is a very very impressive initiative and I think it is important for others in the NHS to hear more about it. I was particularly interested to see that a project developed in one specialist Trust, which offers patients and their families a much-improved service, also benefits so many other organisations in the health and social care systems.

"As set out in the Health and Social Care Bill we want doctors, who know what the most appropriate care is for their patients, to be able to improve health outcomes by tailoring services to patients' needs. This project not only allows families to be together, but shows how treatment can be more effective and efficient. It will also reduce the cost meaning savings can be channelled back into the NHS to improve services further."

Rt Hon Andrew Lansley CBE - MP for South Cambridgeshire and secretary of state for health

 

"This project ... shows how treatment can be more effective and efficient, reducing the cost which means savings can be channelled back into the NHS to improve services further."

 

(discussing the e-vent inititative covered in a BBC article in December 2010 - New approach helps children on ventilators to go home)

Mr Christopher Lincoln – formerly consultant cardiothoracic surgeon at Royal Brompton Hospital and member of expert panel for the Bristol Enquiry 2001

 

"I can’t say enough how amazing the Royal Brompton children’s heart service has been and continues to be. In my experience, it is the best in the world."

Joanne Osmond – clinical director of the Cystic Fibrosis Trust

 

"The removal of paediatric cardiac surgery from the Royal Brompton Hospital will indeed have grievous consequences for children with cystic fibrosis. But the effects will not be confined to children with this serious illness. It is impossible to safely look after children with either heart of lung disease without on-site access to paediatric anaesthesia and paediatric intensive care, neither of which are viable at Royal Brompton without paediatric cardiac surgery."

India Knight – columnist for The Sunday Times and parent of Royal Brompton patient

 

"The Royal Brompton Hospital in London saved my daughter’s life when she was three months old. It only does hearts and lungs; it is a centre of utmost excellent and has an international reputation regarding children’s cardiac services …. Anyone who believes in the NHS, and anyone whose child has ever required complex medical intervention, should support the Brompton to the hilt."

Philip Schofield – television personality and presenter of ITV’s This Morning

 

"My father was a patient at Royal Brompton Hospital over several years and during that time my family and I spent a great deal of time there. We experienced firsthand the type of care that the NHS should be proud of. In fact, he said that if he’d paid a million pounds, he couldn’t have been treated any better."