On the launch today of the care standards and service specifications for children with congenital heart disease (Monday 15 September), the Children’s Heart Federation urges a swift decision about the shape of the future service so heart families can be reassured that their treatment and ongoing care will be of the highest quality wherever they live.

 The charity calls on everyone to fight for the highest quality children’s heart service by taking a positive and constructive approach to this consultation and move on from the ill-feeling experienced by both clinicians and heart families as a result of the last review. The on-going uncertainty around the service has left many heart families stressed and frightened about their future care.

Anne Keatley-Clarke, Chief Executive, Children’s Heart Federation, says:

“An improved medical service for children with cardiac conditions is long overdue. Making these changes requires nerve – three times in the past two decades decision making has stalled. An unreformed service is putting children’s lives at risk as the current children’s heart care system is not as safe as it could be. The families of children who have been injured or died through poorly delivered treatment rarely come forward and their voices need to be heard. It is by listening to children and their families that we can truly see where improvements in care should be made.”

As part of the current review; the professional bodies for surgeons, cardiologists, nurses, intensive care specialists, as well as the Children’s Heart Federation, support the rigorous set of national standards for children’s heart care that, when implemented, should raise the overall standard of surgery, increase cardiology services and reduce waiting times and cancelled operations whilst ensuring that outpatient care is at a clinic close to their home.

There is currently a significant variation between surgical units in the quality of life experienced by children who have undergone surgery. Where units operate beyond their competence in a particular procedure, children can die and suffer harm, sometimes through the need to conduct more operations than would be necessary in a centre more expert in that technique. The standards around scrutinising performance, transferring skills and supporting the development of new techniques, which are integral to this review, should eliminate the life threatening ‘dabbling’ in challenging procedures that has been a feature across the UK children’s heart care network up until now.