Frost family and BHF launch nationwide genetic testing service for deadly heart condition

12 July 2017        

Category: Survival and support

The family of Sir David Frost, and the BHF have launched a new nationwide genetic testing service to identify people at risk of the inherited heart condition HCM, which killed Sir David’s son Miles. 

A launch event for the first posts funded by the Miles Frost Fund took place on Friday in Belfast City Hospital. The Northern Ireland Inherited Cardiac Conditions (ICC) service, based in the Belfast, is the first of six Specialist Inherited Cardiac Condition sites across the UK to benefit from the funding.

The six sites are: 

A total of 14 new Miles Frost Fund/BHF specialist cardiac genetic nurses, counsellors and family co-ordinators will be appointed to support the existing Inherited Cardiac Conditions services at the six sites, to ensure that more people receive the screening and treatment they need to prevent sudden death. Immediate family members of those who test positive to having the gene have a 50% chance of inheriting the gene themselves.

It’s estimated the sites will be able to test an additional 800 people each year who could be at risk of HCM. In Belfast alone, the new posts will help the Inherited Cardiac Clinic Service see an additional 200 patients a year.

Wilfred Frost, younger brother of Miles Frost, said: “When Dad died we were all just in complete shock, and when Miles died it was even worse. To lose someone so young, who in the prime of his life, has been and still is hard to take. We miss him every day.

“We’re determined to look forward and help prevent other families from experiencing the heartache we have which is why we’re incredibly proud to roll out this new service. If we can prevent just one person suffering the same fate as Miles, then his death will not have been in vain.”

The BHF's Chief Executive, Simon Gillespie said: “BHF researchers were among the first to find the faulty genes underlying the deadly heart condition which caused the tragic death of Miles Frost. Thanks to this pioneering discovery, genetic testing for HCM and other inherited heart conditions is now available in the UK. 

“By working with the Frost family to establish a fully functional, UK-wide cascade testing service for parents, siblings and children who could be at risk, our aim is to ensure people who have HCM are identified and treated to prevent a needless loss of life.”

Find out more about the Miles Frost Fund