Friday, 18th May 2012
A new document, Adults living with congenital heart disease, is published today to mark the start of a period of public engagement by the NHS on the future shape of services for adults with congenital heart disease (ACHD) in England. The review is led by NHS Specialised Services on behalf of specialised commissioners in England.
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 has 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.
More information is available at: www.specialisedservices.nhs.uk/info/adults-with-congenital-heart-disease
Notes to editors:
You can send your feedback to the review team in the following ways:
Write to: Christy Rowley, National Specialised Commissioning Team, 2nd Floor, Southside, 105 Victoria Street SW1E 6QT
Talk to us directly: We are holding a number of regional workshops for patients and people working with adults with congenital heart disease. If you would like to attend please contact the communications team (firstname.lastname@example.org / 020 7025 7520)
To request a copy of Adults living with congenital heart disease, an easy read document or find out about the workshops go online or contact the communications team.
Tel: 020 7025 7520
NHS Specialised Services is the national organisation responsible for the commissioning of specialised services that help improve the lives of children and adults who have very rare conditions.
The pre-consultation engagement to improve future NHS services for adults with congenital heart disease (ACHD) runs until Friday 27 July 2012.
Once feedback has been gathered and the standards have been revised an independent group of experts will visit hospitals wishing to provide ACHD services in the future to assess their ability to meet the national designation standards. A decision making group will publish options on how to improve services for people with ACHD and a national public consultation, due to be held in 2013, will ensure everyone has the opportunity to have their say on these options.