News statement: 29 October 2014

The Children’s Heart Federation welcomes the recent report on heart surgery at Leeds GI (28 October 2014) and hopes that the recommendations will be taken into account when the draft standards of care for congenital heart disease, which are currently out for public consultation, are finalised.

The charity is pleased the report acknowledges that “paediatric heart surgery is one of the great modern successes of modern medicine and that survival rates following surgery, although very important, are not the only measure of quality. Timely surgery; minimising disability; improving quality of life; and providing good patient (and parental) experiences are all important markers of quality”.

Anne Keatley-Clarke, Chief Executive, Children’s Heart Federation, says; “We share the concern highlighted in the report that reliable and comprehensive measurements of these quality markers are not yet in place, so as to allow comparisons between units, and the call for the development of such measurements to be given a high priority”.

The charity questions the report in so far as it appears to not take account of the recollections, feelings and experiences of care by parents when not corroborated by medical records. Parents did not have open access to medical records and were therefore unable to query inconsistencies or discrepancies at the time. Future families may be unwilling to come forward if they feel their voice will not be heard unless supported by written evidence.

The Children’s Heart Federation supports a positive and constructive approach to the current consultation and to move on from the ill-feeling experienced by both clinicians and heart families as a result of the last review.

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Further information:

Emma Pelling, T. 020 7624 7533 M. 07958 558172 e. emma@pellingpr.co.uk

www.chfed.org.uk Twitter: @chfed

Notes to Editors:

The Children’s Heart Federation (CHF) is the UK’s leading children’s heart charity and an umbrella organisation for 21 member groups who support heart children and their families. CHF supports families through its information service, small grant programmes, 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.