Family of Sir David Frost fund lifesaving scheme

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Miles Frost, son of Sir David, died aged just 31 as a result of an inherited heart condition

3rd October 2018 by Gareth Jones 0 Comments

The family of a legendary broadcaster has created a legacy that is set to save lives in Scotland.

A nationwide service provided by specialist cardiac nurses to support people suspected to have an inherited heart condition which can cause a cardiac arrest without warning has been created thanks to the British Heart Foundation (BHF) and the family of Sir David Frost.

The Miles Frost Fund was set up by the Frost family in partnership with the BHF to raise £1.5m to better identify people at risk across the UK. The condition was responsible for the sudden death of Miles Frost in July 2015, which prompted his family to set up the fund in his name. Although his father, the journalist and broadcaster Sir David, 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.

A genetic testing service for hypertrophic cardiomyopathy (HCM) has been available in Scotland for 10 years. A year ago, £200,000 of funding from the BHF and the Miles Frost Fund enabled this service to be supported by four specialist nurses and a data analyst whose job it is to support families in the west of Scotland affected by HCM. 

Now, funding for a similar cardiac nurse service covering the rest of Scotland means the entire Scottish population is covered and that, vitally, families can get support, information and treatment in their own health board area.

The latest project, led by Dr Anna Maria Choy, national lead clinician of the Familial Arrhythmia Network of Scotland (FANS), together with colleagues from FANS, has received £154,000 to cover a population of 2.8 million across the north and east of Scotland.

Specialist nurses, working with teams of cardiologists, geneticists and genetic counsellors, will identify people with HCM and provide information, education and psychological support for them and their families as well as initiate life-saving treatment where necessary.

The BHF estimates that one in 500 people have HCM. This means around 10,000 people in Scotland could be living with this potentially life-threatening condition, the majority of whom are undiagnosed because they do not have any warning symptoms.

Close family members of those who have the faulty gene have a 50% chance of inheriting the gene themselves, and therefore screening is recommended.

Dr Choy, also an honorary consultant cardiologist at Ninewells Hospital Dundee, said: “Although screening family members allows doctors to put life saving treatment in place before any problems appear, this does not always happen because there are many gaps in the service. This project is a great opportunity to develop a local, clinical service that is patient and family focused, which will become  integrated into mainstream cardiology services, ensuring continued care in the long term.’

The FANS project will provide a service in the health boards covering the Highlands, Grampian, Tayside, Fife and Lothian and the Borders.

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, 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 in Scotland. If we can prevent just one person suffering the same fate as Miles, then his death will not have been in vain.”

“I’d never heard of HCM before”

Family of Sir David Frost fund lifesaving scheme

Grant Donaldson from Edinburgh was diagnosed with HCM almost eight years ago. He began experiencing breathlessness and chest pains during exertion and went to see his GP. He was sent for tests and, although doctors initially suspected a heart attack, after further testing he was told he had HCM.

Grant, now aged 57, said: “I’d never heard of HCM before so the diagnosis came as a shock. I’ve had to make some changes to my lifestyle but fortunately my symptoms are fairly mild so it hasn’t affected my life too much.

“I’m on daily medication and I still experience chest pains and breathlessness if I overdo things, so I’ve adapted my life to work around the condition and changed my expectations. For instance, I used to do a lot of hill walking but now I’ve taken up bird watching so I can still get out and
enjoy the outdoors in a different way.

“My sister was offered genetic testing and was clear for HCM, but my father and grandfathers died in their sixties from heart problems. In my father’s case all we were told at the time was that it wasn’t a heart attack but it was related to the heart, so I wonder now if he might have been affected by the same condition.

“There wasn’t a lot of support initially after my diagnosis – at first, my wife Maria and I found most of our information on the internet. A service like this offering local support to people with HCM and their
families would have been helpful for me, but probably even more so for my wife. She’s been very supportive but I know she’s also been worried. I think it would have been really helpful for her to have someone to talk to and get more information about what the future might hold for us.”