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for the Royal Brompton’s respiratory services, and research and clinical trials work if cardiac surgery were withdrawn, you appointed a panel headed by Mr Adrian Pollitt to examine the impact which de-designation as a cardiac surgery centre would have upon the Royal Brompton’s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