£1.5bn boost to launch tests for sports death heart condition

Phil O''Donnell died aged 35 after collapsing during a game. Picture: Allsport UK /Allsport
Phil O''Donnell died aged 35 after collapsing during a game. Picture: Allsport UK /Allsport

A Scottish health board has been chosen as one of the six specialist sites across the UK that will launch a new genetic testing service to identify people at risk of a deadly inherited heart condition.

NHS Greater Glasgow and Clyde will benefit from £1.5 million of funding raised by the Miles Frost Fund set up in partnership with the British Heart Foundation (BHF) to check for the condition hypertrophic cardiomyopathy (HCM).

The BHF have teamed up with the family of Sir David Frost, whose son Miles died aged 31 from a sudden cardiac arrest later found to have been caused by HCM in July 2015.

Although Sir David, who died in 2013, did not die of HCM, his post-mortem found the disease was present – however Miles and his brothers Wilf and George, were not tested for HCM at the time.

The condition is also believed to have caused the death of footballer Phil O’Donnell who died aged 35 after collapsing while playing for Motherwell FC in 2007.

At present the incidence rate for the condition is about one in 500 people, with around 10,000 Scots potentially having the condition.

Among those who welcomed the BHF initiative was Karen Greechan whose cousin Jamie Skinner, 13, died four years ago while playing football for Tynecastle BC in Edinburgh. He collapsed on the field after a cardiac arrest.

Ms Greechan said: “It’s fantastic news that heart screening is going to become available, it’s something we’ve thought about since Jamie died. Would he still be alive if he had been screened? Yes, perhaps he would be. When we lost Jamie we were all so shocked, he was so fit and healthy and for it to happen so suddenly is what hit hardest.

“We were not aware if Jamie had HCM as he was never tested for it. I think parents of children taking up sports should have the choice to have their children tested. The Frost family are an inspiration and what they and the BHF are doing is amazing. We will never get over losing Jamie.”

It is estimated that the sites in London, Oxford, Sheffield, South Wales, Belfast and Glasgow will be able to test an additional 800 people each year who could be at risk of HCM.

Simon Gillespie, chief executive of the BHF, 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.”