The review, which is in collaboration with the relevant medical, nursing and patients' associations, has been prompted by the increasing population of adults living with congenital heart disease. Those with the condition are living longer yet specialist services have developed in an unplanned way in some areas of the country. Evidence also shows that some hospitals are carrying out just a handful of surgical procedures on ACHD patients, resulting in some clinicians not carrying out enough procedures to be sure of developing their skills and delivering the best outcomes for patients.
Professor John Deanfield, Acting Chairman of the Adult Congenital Heart Disease Advisory Group, said: "This marks a vital step forward towards improving services for adults with congenital heart disease (ACHD). Services for this patient group need to be developed to evolve with the growing patient population. Patients, families, carers and clinicians should all have an opportunity to ensure that they have a service that is world class. I encourage anyone with an interest in the future of ACHD services to take this opportunity to give us their views."
Michael Cumper, Chairman of the Grown Up Congenital Heart Patients' Association, commented: "This is a fantastic opportunity for people with congenital heart disease to help shape the future of their service. I would encourage everyone who accesses these services to make their views known and to feed into this incredibly important process."
Adults living with congenital heart disease describes why the ACHD review is taking place and includes proposals for a new model of care where services are organised within a network of specialist care. As part of the launch a set of draft designation standards have also been published today. The standards, developed by an expert group of clinicians and patient representatives, propose improvements to services, such as concentrating surgical expertise in specialist centres and improving referral processes. The NHS is now calling for people's views on these draft standards and proposed model of care.
There will be a range of different ways for patients, clinicians and anyone with an interest in ACHD services to have their say, including several workshops that will be taking place throughout June. All evidence, comments and feedback will be considered very carefully and used to improve the draft model of care and designation standards. The NHS is asking for all views by Friday 27th July.
All information will be published on the website: http://www.specialisedservices.nhs.uk/info/adults-with-congenital-heart-disease.