Specialist nurses will play a key role in delivering a new nationwide genetic testing service for a potentially deadly heart condition.
The new service to test for hypertrophic cardiomyopathy (HCM) has been launched this week by the British Heart Foundation (BHF) and the family of Sir David Frost, whose son Miles died from the inherited condition.
“The care of a specialist inherited cardiac conditions nurse is vital to support them through the process”
The Northern Ireland Inherited Cardiac Conditions (ICC) service, based at Belfast Health and Social Care Trust, is the first of six specialist services to benefit from funding from the Miles Frost Fund set up in partnership with the BHF to raise £1.5m.
A total of 14 new posts – including seven specialist cardiac genetic nurse roles – will be created to support existing ICC services and ensure more people get screened for HCM.
The BHF estimates that up to 120,000 people across the UK could be living with HCM, which causes the muscle wall of the heart to thicken, but that the majority will not have been diagnosed.
Many people affected have no symptoms at all and, often, the first time the condition is identified in a family is when an individual dies suddenly.
While there is no cure, people with the condition can be encouraged to make lifestyle changes and be given medication to improve heart function, noted the charity.
New heart charity fund pays for more genetics nurse posts
Other treatment options include being fitted with a pacemaker or debrilliator and specialist interventions, such as alcohol ablation or cardiac surgery, to modify the thickened muscle.
Belfast is among the sites to benefit from extra nursing expertise to support families.
Dr Alison Muir, consultant cardiologist at Belfast City Hospital and service lead, said the service was “proud and privileged” to be the first to feature a Miles Frost Fund/BHF nurse.
“When someone dies from an inherited heard condition, not only will their family be faced with the devastating loss of a loved one, they will also face the possibility that they or another family member could be affected with the condition,” she said.
“It is important they are referred to the service so we can carry out this cascade testing,” she said. “It can be a frightening prospect, so the care of a specialist inherited cardiac conditions nurse is vital to support them through the process.”
Up to 200 additional patients a year could be seen by the Belfast service alone, with up to 800 more people tested across the six sites.
The other sites set to benefit from extra posts, which also include counsellors and service co-ordinators, are:
- ICC clinic at Guy’s and St Thomas’ NHS Foundation Trust, which will get one extra specialist nurse
- ICC service at the Radcliffe Department of Medicine, University of Oxford
- South Yorkshire Regional ICC Cardiothoracic Centre at the Northern General Hospital, Sheffield Teaching Hospitals NHS Foundation Trust, which will get two more specialist nurses
- Abertawe Bro Morgannwg University Health Board in South Wales, which will get one specialist nurse
- West of Scotland Genetic Service at Queen Elizabeth University Hospital, NHS Greater Glasgow and Clyde, which will get two specialist nurses