The
Cardiomyopathy
Association

The CMA has joined a new professional body for those involved in the care of families with inherited cardiac conditions.

The Association of Inherited Cardiac Conditions (AICC) is the first professional body to be set up in this area of medicine and had its first meeting in Cardiff last week.

The new group will be involved in setting standards and guidelines for best practice in diagnosing and treating the conditions, which include cardiomyopathy, and providing education and training for medical staff, promoting research, and advising government, including new health commissioners and policy makers.

Professor Nigel Wheeldon, a cardiologist in Yorkshire and instrumental in getting the association formed, said: “We are already agreeing care pathways for affected families that will reflect best practice, and looking at standards and quality measures. And we are ideally placed to work with the new specialist commissioning boards that will be commissioning care for patients with inherited cardiac conditions under the government’s new Health and Social Care Bill 2011.”

The association’s launch included a scientific meeting, with top experts in the country talking about developing specialist services, guidelines for gene testing, the roles of specialist nurses and genetic counsellors, and identifying which patients are in need of an internal defibrillator.

The association plans to hold an annual scientific meeting and support regional conferences for specialist nurses and trainee cardiologists.

Membership of the association is open to clinicians, nurses, counsellors, scientists and charities involved in patient care. 

The association’s elected 12-man council is equally split between those involved in cardiology and genetics, with representatives from paediatrics, cardiac pathology, specialist nursing and genetic counselling.  Members include Professor William McKenna, professor of cardiology at the Heart Hospital in London and the CMA’s president.

At the launch annual meeting CMA chief executive Robert Hall said: “The creation of the AICC represents an opportunity to discuss what services the patient groups offer and how clinical services interface with them. So it is time to formalise the relationship between the AICC council and patient groups to benefit patients.”

He said the role of the patient groups in the AICC, and more widely in the network of inherited cardiac disease clinics, needed to be more clearly defined.

Professor Wheeldon said the AICC had been set up because there was a need to help services become more co-ordinated. “Inherited cardiac conditions were historically thought of as rare and looked after in small research based pockets of expertise,“ he said. “But collectively they are not rare and are actually very similar in the sense they are all genetic, they often affect young people and can cause major heart problems, sometimes with significant risk to life.  So families need to be managed and treated in a similar way.”

But services to treat the conditions had sprung up sporadically on the basis of need and in an unco-ordinated way with no over-arching strategies, said Professor Wheeldon.