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Landmark decision heralds new era in treatment for children with congenital heart disease

Wednesday, 4th July 2012

Networks of care and fewer larger surgical centres will save lives

Children with congenital heart disease will benefit from consistent high quality standards of treatment following a decision today by the NHS to create seven congenital heart networks across England. The networks will expand ongoing care services so that they are closer to home and focus specialist heart surgery by investing in seven larger centres of surgical expertise.

The decision follows the comprehensive Safe and Sustainable clinically-led review of services and one of the largest consultations in NHS history. Under changes to be implemented in 2014 the NHS will:

Seven children’s congenital heart networks will be established across England and Wales: the North; North West and North Wales; the Midlands; South Central; the South West and South Wales; with two networks serving London, East Anglia and the South East.  Before reaching their decision, the Joint Committee considered 12 viable options, including several options with surgical centres in Leeds, Southampton, Leicester and three centres in London.

Announcing today’s decision Sir Neil McKay CB, Chairman of the Joint Committee of Primary Care Trusts, said:

“This is a landmark decision that clinicians and patients have long called for which will enable the NHS to improve care for children with congenital heart disease. The needs of children, not the vested interests of hospitals, have been at the heart of this review. We only took the decision today after undergoing a robust, fair and transparent process which has already withstood the scrutiny of the highest courts in the land. Before making our decision, we carefully considered the responses to public consultation and all the available evidence and advice.

“Parents, patients and clinicians told us consistently during consultation that quality of care should be the most important factor, so hospitals’ ability to meet the new national quality standards was foremost in our minds when coming to this decision. We recognise these are difficult decisions to make, and that some people will be disappointed to lose their nearest surgical centre.  However, we strongly believe our decision is in the best interests of all children and will ensure services are safe and sustainable for the future.” he said.

Leslie Hamilton, leading heart surgeon and former President of the Society for Cardiothoracic Surgery, said that the rationale for fewer larger centres was compelling.


“Operating on children’s hearts is truly demanding and has become more complex over time. Such complex surgery is best delivered by large surgical teams who can guarantee care at all times of the day or night. By concentrating surgery into seven centres we can continue to improve outcomes and reduce the side effects of surgery. Larger teams of surgeons will result in fewer cancelled operations, reduce the strain on individual surgeons and ensure the service is sustainable for the long term. I am confident that clinicians across the country will now work together to ensure we pool vital skills and provide excellent services in the best interests of children.”

The decision was welcomed by Royal Colleges, professional associations and patient groups including the UK’s largest children’s heart charity, the Children’s Heart Federation. Chief Executive Anne Keatley-Clarke said families had demanded changes to the system for many years. 

“No one should forget that too many young lives have been lost unnecessarily in the past. At the start of the Safe and Sustainable process, parents, professionals and the Trusts all agreed change was necessary to improve the quality of care and outcomes for children. The expansion of services closer to home is good news and increasing specialist cardiac nurses and the role of paediatricians with expertise in cardiology will be welcomed by families,” she said.

Following today’s decision the NHS will work with staff and families to develop detailed plans to implement these changes and ensure that congenital heart networks across England are operational in 2014.  Change will be managed by regional Network Boards overseen by NHS Commissioners who will be advised by the national Implementation Advisory Group, chaired by Professor Deirdre Kelly. The NHS will be inviting parents to get involved in the development of the congenital heart networks to ensure their needs are met.

Sir Neil continued: “This decision is the culmination of a huge amount of work by many people – including young people and their families, clinicians and patient groups – and I would like to thank everyone who has contributed to the review. Now the really hard work begins. Change will not happen overnight; it will be gradual and carefully planned by the NHS.”

Ends

 

The JCPCT decided the following configuration for Congenital Heart Networks:

The North

The North West and North Wales

The Midlands

London, East Anglia and the South East

The South West

South Central

The Decision Making Business Case is available here: http://www.specialisedservices.nhs.uk/document/safe-sustainable-review-children-s-congenital-cardiac-surgery-decision-making-business-case

Notes to Editors:

 

  1. Congenital heart disease refers to defects in a child’s heart that develop in the womb and are present at birth. Congenital heart disease is a life-long condition which can be life-threatening. It is relatively rare affecting 1 in 133 children.
  2. A decision to improve children’s heart surgery in England has been called for since Sir Ian Kennedy’s 2001 Report of the Public Inquiry into children's heart surgery at the Bristol Royal Infirmary 1984-1995.
  3. In 2010 an independent expert panel, chaired by Professor Sir Ian Kennedy, ranked all 11 surgical centres according to a set of according to a set of agreed quality standards developed by experts in congenital heart disease.
  4. More than 75,000 people responded to the four-month public consultation in 2011, making it one of the largest in NHS history.  An independent report of the consultation by Ipsos Mori found quality was the public’s top priority when shaping the future of children’s congenital heart services. Nine out of ten people supported the proposed national quality standards. There was significant support for ensuring excellent care – of those who responded 93% of individuals and 94% of organisations support these standards.
  5. The decision was made today at a meeting of the Joint Committee of Primary Care Trusts on behalf of all PCTs in England at a meeting in public in London.
  6. Professor Deirdre Kelly is Professor of Paediatric Hepatology at Birmingham Children's Hospital and a Commissioner on the Care Quality Commission. 
  7. Safe and Sustainable is managed by NHS Specialised Services on behalf of the ten Specialised Commissioning Groups in England.
    1. Safe and Sustainable has been grateful for the support of patient groups and clinicians throughout the process.  These include: The British Heart Foundation, the Children’s Heart Federation, Little Hearts Matter, the British Congenital Cardiac Association, Royal College of Surgeons, Royal College of Nursing, the Royal College of Paediatrics and Child Health, the Society for Cardiothoracic Surgery, the Academy of Royal Colleges, Paediatric Intensive Care Society, the Royal College of Psychiatrists and other organisations.

 

For further information please call the Safe and Sustainable communications team on 020 7025 7520 or email nhsspecialisedservices@grayling.com 

 

For further information please visit: www.specialisedservices.nhs.uk/safeandsustainable

 

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