On Sunday I posted this guest blog from Kathryn Batten on the review of children’s heart services. As a result, some of the local papers in the areas covered by the review have reported that I was ‘stepping into the campaign’. In fact, as Kathryn knows, I have always been clear that on a subject as emotive and complex as this, I simply do not know enough about the issue to state one way or the other what I definitively think.
And as I said on Sunday, I know from my time in Downing Street that it is easy to generate protest, less easy to make difficult decisions for the long-term. So I posted Kathryn’s blog because it was measured, heartfelt and it was a new platform for her to make her case.
But I do also know there are always at least two sides to a story, and I heard the other side from a good friend of mine, Sir Ian Kennedy, the man currently with the unenviable task of sorting out MPs’ pay and rations, but who was also the chairman of the public inquiry into the deaths of tiny children with heart conditions in Bristol. He is someone I know well, and whose intellect and fairness I respect, so when he said to me he was very that vital changes to children’s heart services are long overdue, I offered this space to him, or to someone who would put the case for reform.
Ian explained that the NHS has involved doctors, nurses, young people and parents in the development of proposals that he believes will see care expanded locally and surgery pooled in fewer larger centres. A public consultation was held last year , and 75,000 views were submitted, making it the largest consultation in NHS history.
So today’s guest blog is from Sir Roger Boyle, former National Director for Heart Disease and Stroke.
Every day across the country the NHS is saving children’s lives. Advances in the treatment of congenital heart disease mean that many young babies with this complex condition who would not have survived treatment in the past are now surviving. In fact most are going on to school, making friends and living into adulthood. But, with change, the expert surgeons and their teams can save even more lives and prevent some of the life-long conditions, such as brain damage, that some children face after surgery.
The decision on the future of children’s heart services is long overdue and has been welcomed by clinicians, professional associations and national charities for the improvements it will bring for children with congenital heart disease. Parents, clinicians and commissioners have persistently called for reform since the tragic events at Bristol between 1984 and 1995, where too many babies needlessly lost their lives.
Sir Ian Kennedy, the Chair of the Bristol public inquiry, introduced his report in 2001 with the words:
“It would be reassuring to believe that it could not happen again. We cannot give that reassurance. Unless lessons are learned, it certainly could happen again, if not in the area of paediatric cardiac surgery, then in some other area of care”.
The decision made in July 2012 will ensure that such events do not happen again.
The decision made by the Joint Committee of PCTs in England (JCPCT) is a milestone in the provision of specialist paediatric care and will provide a sustainable, world-class service for children with heart disease. The JCPCT’s decision was welcomed by a number of Royal Colleges of medicine, whose presidents wrote that the decision will “improve clinical outcomes and help to save more children’s lives in the future”. In today’s Guardian Dr Hilary Cass, President of the Royal College of Paediatrics and Child Health, describes the Safe and Sustainable review as “one specialist outcome of a broader problem, which is that we cannot sustain services safely on the 218 inpatient units. That’s too many and it’s spread too thin…you are not getting the quality of care in every one of those units that we would like children to be receiving.”
Similar change – for the same reasons – has already happened elsewhere: in Germany, Sweden, Canada and Australia to name a few. Closer to home, heart surgery for children has ceased in Cardiff and Edinburgh due to sustainability concerns and in July the child heart service in Belfast was assessed as not sustainable by a panel of experts led by Sir Ian.
In the future vital care will be provided closer to children’s homes; no longer will families have to travel long distances for routine check-ups and diagnostic care because services will be expanded locally.
Highly specialist surgical care involves surgeons operating on hearts that are often no bigger than a walnut and in future the NHS will expand some hospitals so that surgical expertise can be pooled in fewer larger centres. This will guarantee 24/7 surgical care at seven specialist centres in England. Surgeons will operate on more children to ensure they maintain their skills and continue to advance new techniques and breakthroughs in the treatment of heart disease.
Listening to the public’s priorities
Clinical experts in the care of children with congenital heart disease contributed heavily to the process of developing clinical standards and clinical models of care. The eventual decision followed a comprehensive and robust process of engagement and consultation with parents, patients, NHS staff and professional associations. There were 75,000 responses to the public consultation, making it the biggest in NHS history. The JCPCT considered these views and a wide range of clinical evidence before making its decision. This included travel times and emergency retrieval, optimum procedure numbers for each surgical team, self-assessments from each specialist centre and changes to the provision of nationally commissioned services. The only nationally commissioned service to relocate is ECMO (extracorporeal membrane oxygenation), which will be provided at Birmingham Children’s Hospital instead of Glenfield Hospital in Leicester.
Over recent years the children’s ECMO service has expanded across the country and ECMO expertise is now more widely available. Last winter Birmingham Children’s Hospital was ready to provide ECMO care along with seven other hospitals (children and adults). They will want to work with clinicians currently based at Leicester to provide the service to the highest possible standard and the JCPCT has acknowledged that it is a priority to retain the considerable expertise that resides in the ECMO team at Leicester.
Other key considerations
Travel times and emergency retrieval – the time it takes a specialist medical team to reach a child – were carefully considered by the JCPCT, particularly following concerns raised during public consultation. The option chosen by the JCPCT best meets the retrieval standards set by the Paediatric Intensive Care Society in terms of travel times. The optimal minimum figure of 500 procedures to be performed by each surgical team is based on a combination of the need to ensure a sufficient volume of paediatric surgery for four full-time consultant congenital cardiac surgeons in a unit, the need for 24/7 cover and the available evidence and professional consensus. This figure was developed and endorsed by the professional associations and is considered one of the core standards for improving care in the future.
Building a world-class service
The initial stages of implementing these improvements are underway and the NHS needs to prepare now to ensure that the new children’s congenital heart networks can be established. This initial implementation work is vital to ensure the NHS is ready to begin introducing permanent changes next year, such as hospital extensions and improvements to family accommodation. The views of NHS organisations, national parent bodies and professional associations will continue to be heard throughout this process.
Importantly, the networks will provide services across the various geographies so that most families will receive their follow-up and supervision at their local hospital and commonly by the team that sees them now without the need to travel 80 miles up the road.
As former National Director for Heart Disease and Stroke I have long demanded improvements to the service that will provide children with access to the best-possible care, both at Specialist Surgical Centres and more locally. Other areas of the NHS have seen similar service developments – including centralising specialist expertise – which have seen eye-catching results. Following the re-organisation of stroke services, for example, NHS London estimates that up to 400 lives will be saved each year across the capital.
There was a strong belief among respondents to consultation that quality should be the deciding factor when planning future services. Support for ensuring excellent care was significant: 93% of individuals and 94% of organisations who responded support these standards. I have supported this process since the very start and believe that Safe and Sustainable will result in children with congenital heart disease receiving first-class care in the future. I recognise that people have shown a huge loyalty for their local surgical centre but pooling surgical expertise means the clinical community can work together, develop new techniques and deliver improved care to keep more children with complex heart conditions alive. There is total agreement from clinicians, medical Royal Colleges and patient organisations that fewer, larger centres will result in better outcomes for children. Patients, parents and NHS staff have been waiting too long for change.
The decision made on 4 July should be applauded.