National Children’s Heart Charities Voice Serious Concerns over Possible Further Legal Action

For Immediate Release

It is extremely disappointing that possible legal action could delay further vital improvements to children’s heart services. Children have waited too long for change and another protracted legal battle is the last thing families want.

As national children’s heart charities we remain deeply concerned that children still do not have access to specialist staff round the clock. We are very aware that to ensure excellence in and long term viability of paediatric cardiac surgery throughout the country, it is vital to establish a national service whereby each hospital undertaking surgery has sufficient surgeons to enable planned and emergency operations take place at the same time. Children must no longer be dependent on the goodwill of surgeons to come in on their days off and it is vital that there are a sufficient number of operations to ensure that surgeons maintain their skills and develop new treatments.

We recognise that the logic of this means that there will be fewer hospitals offering surgery and so it is equally important that the ongoing, long term cardiology care is provided through outpatient clinics closer to a patient’s home thereby minimising travel for many families.

We understand the loyalty felt by parents to individual centres and the staff who care for their children, but improving the quality of the service nationally must come first. We would remind everyone that there is widespread support from both parents and clinicians for the standards.

We have therefore been saddened to see units attempting to resist change in an approach that some may view as misplaced localism. We urge everyone concerned with the care of children with heart conditions, whether it be clinician, manager, parent or politician, to pull together so that implementation can take place in a planned and timely manner. These changes will ensure that all of the children that need it will have access to world class care in the future.

Anne Keatley-Clarke, Chief Executive

Children’s Heart Federation                               

Penny Green, Director

Down’s Heart Group                                

Julie Wootton, Chief Executive

Max Appeal



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Notes to editors:


1. The Children’s Heart Federation (CHF) is the UK’s leading children’s heart charity and an umbrella organisation for 23 member groups which support heart children and their families. CHF supports families through its information service, small grants programme, peer support events and provision of equipment. The charity also lobbies for changes to the health, social care and education systems for the benefit of heart families (see

2. Down’s Heart Group is a national charity offering support and information relating to heart conditions associated with Down’s Syndrome.

3. Max Appeal is a national charity which was founded by parents of children diagnosed with DiGeorge Syndrome/VCFS/22q11.2 deletion.

4. The Safe and Sustainable review of children’s congenital heart services in England began in 2008 and recommended a new set of national quality standards. An expert independent panel carried out an assessment of the quality of existing centres. The Joint Committee of Primary Care Trusts (JCPCT) conducted a national consultation on proposed options for reconfiguring services.  More information about Safe and Sustainable is available at

5. We can arrange interviews with parents of heart children andAnne Keatley-Clarke, Chief Executive of Children’s Heart Federation.

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