Thousands more patients at risk of deadly inherited heart conditions are to be screened each year following the roll out of a £1.5m genetic testing service by the family of the late Sir David Frost and the British Heart Foundation (BHF).
The service here in Oxford - established by Prof Hugh Watkins – has received funding to support two new posts, allowing the team to see over 200 more people a year.
The Miles Frost Fund, created in memory of Sir David’s eldest son, Miles, has hit its £1.5 million fundraising target, just two years after it launched.
Miles died tragically of an undiagnosed heart condition called hypertrophic cardiomyopathy (HCM), which it’s believed he inherited from his father. However, the family were never offered the genetic testing that could have saved Miles’ life due in part to its sporadic availability across the UK.
The money raised is already helping to fund six Specialist Inherited Cardiac Condition clinics across the UK, with additional centres due to receive funding in March 2018. This will make genetic testing far more available nationwide, and it’s hoped will lead to the national rollout of the service across the NHS.
A total of 14 new Miles Frost Fund/BHF specialist cardiac genetic nurses, genetic counsellors and family history co-ordinators have already been appointed, seeing an additional 800 people each year.
The BHF estimates that up to 120,000 people across the UK could be living with HCM and a total of 600,000 people could be carrying a similar faulty gene that puts them at high risk of having a cardiac arrest or heart attack, with no obvious cause or explanation.
The Frost Family (Lady Carina, Wilfred and George), said: “Miles’ death was absolutely devastating for all the family. But what made it all the more tragic was finding out that it could have been avoided.
“That knowledge motivated us to launch the Miles Frost Fund to raise money and awareness relating to inherited heart conditions, especially HCM. We are proud to have reached the £1.5m target that we set with the British Heart Foundation and delighted to see that money already at work across the UK so that other families have access to testing and don’t go through the same heartache that we did.
“We hope that by launching these services, many lives will be saved in Miles’ memory.
“We are so very grateful to everyone who has donated money or helped with fundraising for the Miles Frost Fund. Your help and generosity has helped us ensure that Miles’ death was not in vain, and delivered some good news after what was such a painful event for us two and half years ago.”
Through the Miles Frost Fund the BHF is working to ensure no one slips through the gaps. The six sites which have already benefitted from the Miles Frost Fund are:
- London: Guy’s and St Thomas’ NHS Foundation Trust, Inherited Cardiac Conditions Clinic
- Oxford: Oxford University Hospitals NHS Foundation Trust, Inherited Cardiac Conditions Service
- Sheffield: South Yorkshire Regional ICC Cardiothoracic Centre, Northern General Hospital
- South Wales: Abertawe Bro Morgannwg University Health Board, Neath Port Talbot
- Glasgow: West of Scotland Genetic Service, Queen Elizabeth University Hospital, NHS Greater Glasgow and Clyde.
- Belfast: Inherited Cardiac Clinic Service, Belfast Health and Social Care Trust
BHF Professor Hugh Watkins, at the Radcliffe Department of Medicine, University of Oxford, helped set up the first genetic testing service for HCM in the UK. The service is based at the John Radcliffe Hospital, Oxford University Hospitals NHS Foundation Trust.
Professor Watkins said: “The consequences of failing to identify those at risk of HCM can be fatal. It’s vital that immediate family members of those affected by HCM are referred for testing, and through this improved service and the support of the Miles Frost Fund we can help hundreds more families. We must now work with the NHS to raise awareness of this service, so testing can be made available nationwide. Only then will we ensure no one slips through the gaps.”
Dr Anna Michell, Principal Genetic Counsellor in Inherited Cardiac Conditions at John Radcliffe Hospital in Oxford, said: “As genetic counsellors we seek to provide support, information and advice to families as they go through the process of genetic tests for conditions such as HCM. Of the 120,000 people living with HCM in the UK, many will not know that they are living with this potentially fatal condition. This funding has allowed us to increase capacity in our busy clinic, ensuring that more families can be referred for testing nearer to home and supported through a life-changing diagnosis.”
In addition to enabling the diagnosis of inherited heart disease in families across the region, the service facilitates pioneering research into the causes of these diseases, funded by the BHF and NIHR Oxford Biomedical Research Centre. Understanding the biological consequences of genetic variations on the heart will take us closer to improved treatments for these conditions.
To find out more about the Miles Frost Fund or to make a donation to support the rollout of genetic testing for HCM, visit: www.milesfrostfund.com