For the attention of the expert Panel advising the JCPCT:
“A SUMMARY OF CONCERNS RELATING TO THE IMPACT OF THE JCPCT’S PROPOSALS ON ALL OTHER PAEDIATRIC SERVICES OPERATED BY THE ROYAL BROMPTON & HAREFIELD NHS FOUNDATION TRUST”
Submitted on behalf of the Board of the Royal Brompton & Harefield NHS Foundation Trust,
June 23rd 2011
Robert J. Bell,
1. Preliminary remarks to our summary
2. Impact of the JCPCT proposals on services outside the panel’s terms of reference
3. Paediatric respiratory medicine at RBH – an introduction
4. The essential role of paediatric intensive care and paediatric anaesthesia
5. The wider impact of the close of the PICU and paediatric anaesthesia on other services
6. The impact of the JCPCT’s proposals on RBH’s academic and teaching & training work
1.1 In a letter dated 2nd June, Sir Neil McKay has kindly invited the Board of our Trust to lay out its concerns as to the impact of the JCPCT’s proposals - that the Royal Brompton Hospital (RBH) should cease providing paediatric cardiac surgery - on all other paediatric services carried out at RBH.
1.2 Although Sir Neil’s letter refers to ‘other paediatric services’, the Terms of Reference (ToR) for the Panel to whom this Summary has been submitted however identify only two types of services, namely ‘diagnostic bronchoscopy’ and ‘paediatric respiratory services’. The stated rationale for this is that these were ‘the services identified at risk by RBH’. The ToR also states that “the RBH did not submit any detailed evidence to the JCPCT about the services during the review process during 2010 and 2011”.
1.3 In response to this, we ask that the Panel should be aware that throughout the review process our Trust has consistently indicated that a very broad range of services would be subject to the impact of the proposals of the JCPCT:
At the end of March 2010, in a paper submitted to the London Specialised Commissioning Group (LSCG), a senior member of which subsequently sat on the Steering Group / ‘expert clinical group’ that advised the JCPCT, we pointed out that:
– “Reconfiguration around surgery at two sites would cause the relocation or severe undermining of all RB&H’s inpatient paediatrics, including paediatric intensive care, paediatric thoracic surgery, paediatric long-term ventilation and paediatric respiratory medicine”; and that a likely consequence of this “would be to force the GUCH programme at RB&H – the largest in the UK - to wind down”.
– “The removal of paediatric cardiac services would render the PICU completely unworkable, in turn removing an essential underpinning for our paediatric respiratory services for patients with diseases such as cystic fibrosis and DMD [Duchenne Muscular Dystrophy]. These are widely recognised as one of the leading set of services in the UK, if not Europe: the impact on patients (as well as on the Trust’s long-term financial health and reputation) would be hugely detrimental”.
On the 3rd June 2010, we received from the National Specialist Commissioning Group (NSCG) on “Safe & Sustainability” letterhead a summary prepared by the LSCG commenting on our formal submission to the Kennedy review, one of which comments stated that:
– “Commissioners are aware that the loss of the PCCS service would significantly undermine much of the rest of the Trust's paediatric services, most significantly PICU”.
– “The inter-relationship of the services…was, in effect a house of cards. If Paediatric Cardiac Surgery went, Paediatric Intensive Care Unit (PICU) would cease to be viable, and that would impair our Respiratory Services, since they also depended upon the availability of PICU. We explained to you that Interventional Cardiology Services also depended upon there being a PICU and the availability of Cardiac Surgery so that Paediatric Cardiology as we practice it would also be imperilled...[and]…that the Adult Congenital Heart Disease (ACHD) service depended upon the inter-relationship and joint sharing of the same surgeons with [the] Paediatric Congenital Cardiac Surgery service.”
1.4 We respectfully suggest to the Panel that the premise upon which the scope of services for the Terms of Reference (ToR) is based – ie ‘diagnostic bronchoscopy’ and ‘paediatric respiratory services’ because these were ‘the services identified at risk by RBH’ - is incorrect; and that the contention within the ToR that ‘RBH did not submit any detailed evidence to the JCPCT about the services’ is wholly misplaced.
1.5 Consequently we have described in section 2 below three sets of services directly impacted by the JCPCT’s proposals which however lie outside the ToR. In deference to Sir Neil’s request that our Summary should focus on the Panel’s Terms of Reference, we have abbreviated these descriptions so as to ensure that the main body of this Summary (section 3 & onwards) relates to services within the ToR.
2.1 The impact of these proposals extends in particular to three other adult and paediatric cardiac services of national and international standing that operate at RBH.
2.2 Paediatric Interventional Cardiology – the Trust is one of the largest centres in the UK providing electrophysiological interventions to paediatric patients with arrhythmias. These patients get ready access to technologies, expertise and equipment (eg magnetic navigation, device implantation) that exist as a result of a larger set of adult electrophysiology services, yet these interventions cannot be performed without paediatric anaesthesia and the back-up of a PICU. One important group of patients that would be affected would be those with Inherited Cardiac Diseases (ICDs), such as Hypertrophic Cardiomyopathy and Long-QT Syndrome. We believe that RBH is probably the only one of all the centres in the UK that has a fully comprehensive service for both adults and children, enabling it to diagnose and treat patients of all ages within the same family at the same time. This capability would be rendered useless if there was no access to paediatric intensive care and anaesthesia.
2.3 Adult Congenital Heart Disease (ACHD): RBH has the largest adult congenital heart disease population in the UK with more than 6,000 patients. The ‘Brompton model’ of vertical integration to treat the patient throughout all stages of his / her life is recognised internationally. It is this vertical model of care that determines that our four congenital surgeons operate on both adults and children, and that each achieves a level of more than 145 procedures each per year. If however they are no longer able to operate on children, the average number of procedures drops to 40, a clearly unsustainable level of activity. From a non-surgical perspective, some 70-80% of new patients entering RBH’s ACHD patient cohort transition seamlessly from paediatric care (one of the key reasons why our population of 6,000 patients is the largest in the UK). Without this flow, the wider ACHD service will wind down inevitably and become unviable.
2.4 Pulmonary Hypertension: RBH is one of nine specialist pulmonary hypertension (PHT) centres in the UK, with a designated focus on patients with congenital cardiac abnormalities. Consequently 50-60% of these PHT patients – principally those with Eisenmenger Syndrome – arrive at RBH through the ACHD service and its clinics. Without the ACHD service feeding into it, our PHT service would lack the critical mass to remain viable.
3.1 The paediatric respiratory medicine unit is the largest clinical and academic unit of its kind in the UK, and arguably the only one of a size to compete internationally in both areas. With recent appointments, we comprise three full time and one part time NHS consultants, one Professor, one Reader and two Senior Lecturers, with three specialist registrars and three clinical fellows. The multidisciplinary team includes four specialist cystic fibrosis nurses (two home care full-time equivalents), two whole time equivalent specialist asthma nurses, a research nurse funded by the Medicines for Children Research Network, four physiotherapists (two home care job-share), two dieticians, two clinical psychologists and a specialist pharmacist. There are three physiologists, two for sleep and one for primary ciliary dyskinesia. We are an integral resource for the Technology Dependent Children’s team, headed by Dr. Gillian Halley, which is staffed by a consultant, a respiratory advanced practitioner, two clinical nurse specialists, and a physiotherapy respiratory specialist. These teams have been built up over a number of years, and have developed ways of working closely together that enable the transfer of techniques developed by one team to all the others. Examples of this include the introduction of NIV (Non-invasive ventilation) to cardiac patients, and the development of common best practices in pain management and sedation. This combination of a critical mass of cross-disease / cross-functional expertise and proven working inter-relationships would be broken up in the event of the decommissioning of paediatric intensive care and anaesthesia at RBH, and its benefits wholly lost. We cannot identify any other single unit in London which can house this size a team in its entirety. It should be noted that despite the size of the team, on a per capita basis the CF (Cystic Fibrosis) Trust has identified us as having fewer staff members per CF patient than most other units.
3.2 The scale of our activities has been increasing steadily over the last five years, with over 1,200 patients generating 1,600 in-patient spells and over 4,800 outpatient consultations per annum. During the recent CF Trust accreditation visit, the unacceptably long waiting times for admission were highlighted, as a result of which we propose to open 14 new CF beds. We are also building a dedicated sleep laboratory, which will grow the number of sleep studies we can offer from 780 to c.1,100 per year as well as increasing their level of sophistication, and which will also be a major resource for Dr Halley’s team. We know of no unit in London which can offer us in matched facilities. In addition to our in-house workload, we run Consultant delivered, shared care outreach clinics in 19 District General Hospitals across the South-East of England.
4.1 It is impossible to look after sick children, or children with complex respiratory problems, without access to paediatric anaesthesia and paediatric intensive care. We know of no unit of comparable size or expertise anywhere in the world which would try to function without these specialities. The importance of these specialities to the various divisions will be highlighted in section 5.
4.2 Paediatric intensive care: the JCPCT recognises that the proposed decommissioning of Paediatric Cardiac Surgery at Royal Brompton will lead to closure of the Paediatric Intensive Care Unit. However they clearly have not considered the effect on other services of the closure of the PICU. Our admission figures for April 2010 – March 2011 show that of 615 receiving intensive care, 498 had heart disease as a primary cause of admission. Of these cases 436 admissions followed cardiac surgery, the balance being children admitted following cardiac catheterisation, following electrophysiological procedures and both internal and external non-surgical cardiac cases such as cardiomyopathy and arrhythmia. In the same year the PICU also cared for 63 children with lung disease including 30 undergoing thoracic surgery (mainly for cancer), and the majority in support of our complex tertiary respiratory practice. Finally 32 children were admitted to the PICU following paediatric non-cardiac surgery. These children all had serious underlying heart or lung disease and needed major general surgical or ENT procedures. Our ENT and general paediatric surgical colleagues from other centres are an intrinsic part of our extended team, and have dedicated operating sessions in the Trust. They choose to undertake such procedures on complex cases at RBH because of the co-location of skilled speciality paediatrics (cardiology, paediatric respiratory medicine), paediatric anaesthesia and paediatric intensive care on the RBH site. In summary therefore, the closure of the PICU will displace not only 436 surgical children, but 179 other cases disrupting care pathways in children’s cardiology, electrophysiology, paediatric pulmonology, paediatric thoracic surgery and paediatric general surgery.
4.3 Paediatric anaesthesia: Every paediatric cardiac surgeon, procedural cardiologist and bronchoscopist works hand in hand with a consultant paediatric anaesthetist and extended paediatric team. The volume of cases is just as important for the paediatric anaesthetist as for the paediatric cardiac surgeon. RBH provides 24/7 cover with anaesthetists dedicated to the paediatric service. Information drawn from the RBH Operating Theatre Information System shows that a total of 931 anaesthetics were undertaken for children under 16 years of age between April 2010 and March 2011. Of these cases 462 were paediatric cardiac surgery-related, 251 were respiratory (bronchoscopies), the balance being thoracic surgery, paediatric non-cardiac surgery and dental cases. In 2010 (data from Catheter Laboratory Database via Dr S. Jaggar), 440 anaesthetics were administered to children in the cardiac catheter and electrophysiology labs. Virtually all of this work requires the availability of an intensive care bed as either the planned post-procedural destination, or as a backup. The residual paediatric anaesthetic workload if cardiac surgery, cardiac catheterisation and other specialist surgery requiring PICU post-procedure were to disappear, as it will with the decommissioning of paediatric cardiac surgery and the closure of the PICU, the residual volume of paediatric cases would be insufficient to maintain a safe paediatric anaesthetic service on-site. This would further degrade the Trust’s ability to provide acute care.
5.1 Clinical work – investigation of children with respiratory disorders: the most commonly performed invasive investigation is fibreoptic bronchoscopy (around 250 per year, which, although no National database exists, is probably more than any other unit in the UK). Although some units perform this procedure under sedation, it is the unanimous view of the paediatricians and anaesthetists that the very sick population of children we see are best served by general anaesthesia. Although unexpected admission after bronchoscopy to PICU is uncommon due to the experience of our theatre and anaesthesia teams, it would be quite unjustified to imperil the life of a child by performing bronchoscopy under anything but optimal conditions. Without paediatric anaesthesia and PICU we would be totally unable to investigate many children who are referred to us. Modern scanners for the most part do not require children to be anaesthetised, but in particular for small children adequate scanning requires them to be anaesthetised. Again, this would be impossible if our paediatric anaesthetic service disappeared.
5.2 Clinical work – Cystic Fibrosis: We have the largest paediatric CF clinic in Europe (320 children) and the only larger clinic is Adult CF at Brompton (550 adults). Co-location with adult services allows seamless transition in this as in all other respiratory diseases. We are the only unit south of Liverpool able to offer a diagnostic electrophysiology service (nasal potential difference), and receive referrals from throughout the south of England, Wales and Ireland for this investigation, while also training investigators from CF units throughout Europe. A small number predictably require bronchoscopy (to determine whether occult infection is being missed in a child who is doing badly) and surgery (implantation of vascular access devices, feeding tube insertion). No specialist CF unit anywhere would try to function without offering these facilities, not least because the CF Trust would never accredit such a unit. We believe that the other main centre (Great Ormond Street Hospital) in London for paediatric CF has no spare capacity, having imposed upon itself a cap of a maximum of 200 patients.
5.3 Clinical work – Primary ciliary dyskinesia (PCD): Royal Brompton is one of only three centres which are centrally funded to offer diagnostic services for this condition. Typically more than 300 children are tested each year, with the numbers having risen steadily. We follow up 140 children with PCD through 6 specialist multidisciplinary clinics with audiology and ENT input, by far the largest group being followed up in the UK. In addition we have four annual transition clinics to stream around 16-24 patients a year into the adult PCD service here at RBH, which combined with the paediatric service constitutes the largest cohort of PCD patients in Europe. We are currently applying for NCG funding to develop further and expand the PCD management service to further improve the quality of care: having passed successfully through the preliminary bid process we are now in the final application process. If the bid is successful, we will then have the largest PCD clinic in the world with a service that runs ‘from cradle to grave’. Children with PCD have very similar surgical and PICU requirements as those with cystic fibrosis: consequently this service would be rendered wholly inoperable by the loss of paediatric anaesthesia and intensive care.
5.4 Clinical work – Severe asthma: This service attracts quaternary referrals from all over the UK, and beyond to Europe, amounting in total to around 130 patients. We have shown that a specialist multi-disciplinary assessment obviates the need for invasive investigation in more than half the referrals, and recent unpublished data shows that the benefits extend out to two years post-assessment. This leads to reduced morbidity in the children, and a reduction in NHS costs. However, a substantial remainder of these children require invasive investigation including bronchoscopy, which would be impossible without PICU and paediatric anaesthesia. We are leading on the UK-wide database, and also interacting with the GA2LEN network as part of the Europe-wide initiatives to set up randomised controlled trials of treatment. We are the only unit in the UK conducting controlled trials of the efficacy of steroid sparing agents for children with severe asthma, including omalizumab (monoclonal anti-IgE antibody), subcutaneous terbutaline, and other agents such as methotrexate and ciclosporin.
5.5 Clinical work – Technology dependent children: These patients fall into two categories.
Firstly, in conjunction with the adult unit, we look after 220 children who use non-invasive nasal mask ventilators just at night, mainly because of muscle weakness, the largest such group in the UK. These children suffer acute deteriorations requiring PICU, and their successful weaning requires the specialist skills of the physiotherapists. It would be ludicrous for their PICU care to be off-site, away from the physiotherapists whose skills are pivotal to a successful outcome
The second group of patients (c.150) are children with tracheostomies, who have a much higher level of dependency, and for whom the Children’s Long Term Ventilation (LTV) Service is unique in offering specialist clinical support across boundaries from hospital to home throughout London and the South East. The multidisciplinary team provides an outreach service to all London paediatric intensive care units as well as premature baby units, local hospitals, hospices, children’s centres and the community. Our education and training programme is available to all hospital and community professionals with a module for parents and carers to support delivery of safer care at home.
The LTV clinical pathway is patient centred and won the NHS London Innovator Award in November 2009. Dr Halley’s team has also received NHS London Regional Innovation Fund in 2010 and was selected against stiff competition to receive a second round of funding in 2011 to support diffusion of an initiative that has attracted the attention of government ministers including Secretary of State for Health, Andrew Lansley, and Lord Howe. Dr Halley is working with colleagues within the Department of Health to support care closer to home for this population and to redesign a commissioning model that matches the clinical pathway in order to deliver cost savings to the NHS as well as better quality of care for patients and their families.
It is vital that the team maintain advanced skills by working within the tertiary centre. Children referred from other regional centres are admitted to PICU for specialist respiratory evaluation including setting up portable ventilation and carrying out investigations including bronchoscopy. This inpatient assessment is often critical in evaluating medical stability and technology dependence which in turn supports local teams in their management and risk assessment. Building on the home nursing and physiotherapy care programme that RBH pioneered for Cystic Fibrosis, the LTV team is not just delivering an inpatient service but follows the entire patient pathway to ensure that care in the community is as safe as it can be. This service is in keeping with the NHS directive for care closer to home in long term conditions, as well as with the message delivered by David Nicholson to the NHS Innovation Expo 2011 in which he emphasised the importance of breaking down the barriers between hospital and community care.
5.6 Clinical work – Empyema: We look after 40-50 cases of empyema per year, and insert all chest drains under general anaesthesia. This is a very safe and humane way to carry out this procedure in children. Due to intensive medical management only a minority (c. 3%) of these children require open surgery and admission to PICU. It is not always possible to predict in advance which patients will require PICU recovery but it is essential that this option is available to all on-site. During the winter when beds are scarce in London, District General Hospitals often find it difficult to find a bed for a child with empyema, resulting in delay to starting the urgent treatment they require. As a consequence we frequently admit patients from as far afield as East Kent, Essex and West Sussex. The decommissioning of paediatric anaesthesia and intensive care at RBH will put even greater pressure on the other 3-4 centres in the South-East of the UK who deal with this condition.
5.7 Clinical work - overlap with paediatric surgery: We receive frequent referrals for assessment of interstitial lung disease, usually mandating a surgical lung biopsy, requiring anaesthesia and PICU back-up because these children are very sick. Other surgical work includes removal of endobronchial foreign bodies, resection of metastatic cancer, and lung resection for congenital lung malformations. The intensive care and anaesthetic requirements for these procedures are the same.
5.8 Clinical work - transition to adult services: A major strength of the clinical service at RBH is the seamless transition to adult care. There are established transition pathways for all major conditions, including cystic fibrosis, primary ciliary dyskinesia, neuromuscular diseases, bronchiectasis, asthma and sleep disorders. As we have both adult and paediatric services on site which allows a seamless transition from paediatric to adult care. A particularly good exemplar is paediatric non-invasive ventilation, where paediatric outpatient clinics for initiation of non-invasive ventilation are attended by a team member (usually the Consultant physiotherapist in sleep and ventilation) who covers both paediatric and adult services. There are also combined paediatric ventilation clinics staffed by a paediatrician, paediatric neurologist and consultant physician with an interest in ventilatory support. This enables a unique working environment that assists in the transition of teenagers into the adult service within a team that is well known to them and their families. Being located on one site means that the patient and their family come to know the health care team, which allows stability of provision of care during the transition period. This is of significant benefit to patients and their families at a time when the child is taking on responsibility for their own health care. The difficulties of transition are often compounded by the need of the teenager to adjust to new clinical teams and a new hospital. Neuromuscular disease is a long term condition, which requires an understanding of the different issues that occur during life. The team members involved in the provision of ventilatory support or surveillance are well placed to provide that support as the patient with a lifelong or life limiting condition copes with the demands of adult life. Furthermore, this arrangement, as well as being highly beneficial to the patients, allows for economies of scale, and obviates the duplication of expertise, equipment and facilities where paediatric and adult services are on separate sites. The decommissioning of paediatric intensive care and anaesthesia would negate the benefits of this model of transition for long term care and would remove an important choice for patients and their families. Space precludes detailed discussion of our other transition pathways.
6.1 The Department has always been very Research active, not merely in purely paediatric projects, but also jointly with adult medicine. Examples of the latter, which would be completely disrupted if the Department were to be compelled to move or redistributed between disparate centres, include the GABRIEL consortium (€11 million), U-BIOPRED (Professor Bush being the lead for Paediatrics for the total grant, €24.5 million) and the Gene Therapy funding (£40m total, RBH’s share being £17.5m). We receive regular grant support from the Wellcome Foundation, Asthma UK, the CF Trust, and the British Lung Foundation. Professor Bush is a Principal Investigator in the MRC Asthma UK centre for Allergic Mechanisms in Asthma (Imperial College and Guys/Kings/St Thomas’s Hospitals), and is a Senior Investigator of the NIHR. He has been cited more than 9,000 times, which places him among the top 10 respiratory scientists in Europe. Dr Jane Davies is co-Principal Investigator with Dr Di Bilton in the European CF clinical trial network centre based at RBH, which is one of only 4 CF centres in the UK to have been admitted, none of the others being in the south. Dr Davies also sits on the Medicines for Children Research Network Respiratory and CF Clinical Studies Group, the European CF Diagnostic Network and the European CF Standardisation Committee. She is the clinical lead for the UK CF Gene Therapy Consortium, which is shortly to start the largest ever trial of gene therapy for children and adults with CF. In close collaboration with the adult service, we are involved in phase 3 trials of novel small molecule drugs targeting CFTR, acting as a referral centre for all other south of England centres. More than 120 peer review papers (2005 to end-2010) have been produced, as well as numerous invited chapters and books edited. All consultants and academics lecture all over the world, usually giving more than 100 invited lectures per year.
6.2 Teaching and Training: We are part of the National Grid training scheme and the London rotation is usually the most popular. In the past 20 years, more than 50 junior doctors who received training in the Department have been appointed to senior positions. Nearly two thirds have been appointed to Teaching or Postgraduate hospitals, or University positions. In the same time period, 24 MD, MD(Res) and PhD theses have been awarded to Research Fellows in the Department. Currently three PhD and five MD(Res) students are actively researching and four MD(Res) students are writing up. In 2011, Professor Bush was given the Rector’s award and medal for excellence in Research Supervision. Other training activities include the CF Shared Care Study Days for our shared care clinics, and the Bronchoscopy Course (alternate years) which attracts trainees from all over the world. This is the only course of its kind in the UK.
6.3 Public service: Professor Bush is co-Editor in Chief of Thorax, the top-ranked respiratory journal outside the UK, the first paediatrician to hold this post, and co-Editor of Kendig’s Textbook of Respiratory Paediatrics, the major book in the field. He is past Head of the Paediatric Assembly of the European Respiratory Society 2005-8), Charles West Lecturer of the Royal College of Physicians (2007), Jonxis medallist (2008, University of Groningen) and has been visiting professor in the USA on five occasions. He was the CIPP Presidents awardee, 2010, for “Outstanding achievement in Pediatric Respiratory Science and for contributions to the improvement of global care of children with pulmonary diseases”. Dr Ian Balfour-Lynn is past president of the British Paediatric Respiratory Society (and a current Vice-President), a member of the British Thoracic Society Specialist Advisory Group for cystic fibrosis and also for home oxygen, a member of the CF Trust Medical Advisory Committee and Chair of CF Trust Standards of Care Committee, the Associate Editor (Respiratory) Archives of Disease in Childhood, a member of the Editorial Board of Paediatric Pulmonology, and an Associate Editor of the Paediatric Respiratory Reviews. Dr Jane Davies sits on the Medicines for Children Research Network Respiratory Group; Dr Mark Rosenthal is Chairman of Paediatrics for the NHS Information Centre; Dr Claire Hogg is a founder and Board/Scientific Advisory Board member of the Ciliopathies Alliance UK; and Dr Seajal Saglani is Chair Elect of the European Respiratory Society’s Lung Science conference, the first Paediatrician to hold this post.
Paediatric Respiratory Medicine at RBH is a very large thriving unit, clinically and research active to a level that arguably cannot be rivalled anywhere else in the UK, and prominent in teaching and in training. There is no single space in London to re-locate it. This would mean that this concentration and critical mass of expertise and knowledge would, in being broken up, be to a very great extent dissipated. This is inevitable if paediatric anaesthesia and intensive care, without which it cannot function, were to be removed from RBH. In addition, a broad set of both paediatric and adult cardiac services, for which RBH is one of the leading centres in the UK, would be also be rendered inoperable by the absence of paediatric anaesthesia and intensive care that would result from the JCPCT’s proposals.