A nationwide genetic testing service for the inherited heart condition hypertrophic cardiomyopathy is launched today.
The move is in response to the death of Sir David Frost’ son Miles from this condition in July 2015 two years after this father.
Following Miles’s death, the Miles Frost Fund was set up with the British Heart Foundation – and went on to raise £1.5m for the new nationwide testing initiative.
Developers say that testing could have identified the disease in the family at the time of Sir David’s death in 2013.
Hypertrophic cardiomyopathy can cause a cardiac arrest without warning and could be undiagnosed in up to 120,000 people in the UK, say the charity. It says that genetic testing could find up to 800 previously-undiagnosed people each year.
The charity is working with six Specialist Inherited Cardiac Condition sites across the UK. These include Guy’s and St Thomas’ NHS Foundation Trust in London, Abertawe Bro Morgannwg University in South Wales, and the Inherited Cardiac Clinic Service, at Belfast Health and Social Care Trust.
The funding will provide 14 new specialist cardiac genetic nurses, counsellors and family co-ordinators at the six sites.
Younger brother of Miles Frost, Wilfred 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."
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