Scotland gets nationwide nurse service for deadly heart condition

3 October 2018        

Category: Research

People across Scotland who are unknowingly at risk of dying from a fatal heart condition can now be better identified and treated thanks to a cardiac nurse service provided by funding from the British Heart Foundation (BHF) and the family of Sir David Frost.

Miles Frost and David Frost

This means that for the first time Scotland will have a nationwide service provided by specialist cardiac nurses to support people suspected to have hypertrophic cardiomyopathy (HCM), an inherited heart condition which can cause a cardiac arrest without warning.

A genetic testing service for 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 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), has received £154,000 to cover a population of 2.8 million across the north and east of Scotland. Specialist nurses, working with cardiologists, geneticists and genetic counsellors, will identify people with HCM and provide information, education and psychological support as well as provide life-saving treatment where necessary.

The Miles Frost Fund

Funding has been provided for developing this new specialist nurse role in Scotland thanks to the Miles Frost Fund, which 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 BHF estimates that 1-in-500 people have HCM. That 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.

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. Close family members of those with the faulty gene have a 50% chance of inheriting the gene.

Dr Choy 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.

Preventing heartache

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.”

Jenny Hargrave, Director of Innovation in Health and Wellbeing at the BHF, said: “BHF-funded researchers were among the first to find the faulty genes underlying the deadly heart condition HCM. Thanks to this pioneering discovery, genetic testing for HCM and other inherited heart conditions is now available.

“I’m proud to say that, thanks to the Frost family and the BHF, families in Scotland affected by HCM now have a local specialist cardiac nurse service which will provide them with peace of mind and could even save lives.”

Find out more about the Miles Frost Fund