Adult Congenital Heart Services under review

The NHS in England and Wales is reviewing Adult Congenital Heart services.

Following the high-profile Safe & Sustainable review of childrens’ cardiac services, the NHS is also reviewing the services for congenital heart patients who have grown beyond childhood.

Although there have been adults with congenital heart disease reaching adulthood for many years, and in larger and larger numbers since the 1970s, the NHS has never had an officially set-up and funded national adult congenital heart service. Instead, patients have been dealt with by various hospitals and services have grown up around the paediatric centres. Now there are many individual examples of excellent care, but no national standards or officially recognised specialist or local centres. And not all teenagers and adults with congenital heart disease get approprirate care – especially if they have “fallen out” of the system or were discharged from long-term follow-up years ago.

The review is communicating its progress and is inviting comments and questions from people who might be affected.

This is your best chance in years to influence the cardiac care that you will receive in your teens and right through their adult life. And for parents whose children are not yet adults but will grow out of paediatric services, too.

FOR MORE INFORMATION, AND TO GET INVOLVED, FOLLOW THE LINKS BELOW

The page which links to the documents for the GUCH review is here:
http://www.specialisedservices.nhs.uk/info/adults-with-congenital-heart-disease

The review terms of reference are here:
http://www.specialisedservices.nhs.uk/document/guch-process-terms-reference

The draft standards are here:
http://www.specialisedservices.nhs.uk/document/designation-specialist-service-providers-grown-ups-with-congenital-heart-disease-guch-adults-with-co-1

And the output from the GUCH Patients Association conference in October 2011 is here:
http://www.specialisedservices.nhs.uk/document/feedback-report-engagement-with-patients-at-guch-pa-conference-october-2011/search:true

All comments on any of the above or matters relating to this review can be sent to the Adult Congenital Heart Review Team on: adultheart@nsscg.nhs.uk . “

CHD-UK November 2011