NHS Improvement hosted the launch of the PHG Foundation’s report on Inherited Cardiovascular Conditions Services. Held on Monday 15th June in London, this attracted a large audience of cardiac network stakeholders and members of the cardiac genetics communities. The report itself is comprehensive and thorough and makes a series of sound recommendations about the establishment and effective running of ICC services.
The launch included an excellent programme of presentations, led by Roger Boyle (National Director for Heart Disease and Stroke). In outlining the report, project lead Dr Hilary Burton reminded the audience that the (conservatively) estimated UK prevalence for inherited cardiac conditions including familial hypercholesterolaemia (FH), is between 306,629-380,258. It is thought that about 75-90% of at risk individuals for FH are unaware of their risk.
One interesting session was an outline of the quality markers of a good ICC service, where we heard the views from a range of experts, including from paediatrics, an ICC Nurse and a patient representative. There was clearly common ground here – coordination, communication and continuity, as well as multidisciplinary and interprofessional working, and family-centred evidence-based care.
I came away from the day (rather exhausted after a 4.15am start!) with the feeling that there is consensus on the need for ICC services to serve the needs of the UK population – and to avert the sudden deaths that can result when risk goes undetected, as we heard in some of the presentations . One of the challenges is, as ever, raising awareness, amongst the general public, but also amongst health professionals many of whom still take the view that genetics is ‘just another case of specialist pleading’.