Thousands more people nationally – and hundreds in our region – could be screened for deadly inherited heart conditions at the John Radcliffe Hospital after it received a grant to expand a genetic testing service.
The funding from the Miles Frost Fund and the British Heart Foundation (BHF) was announced at the John Radcliffe on Monday (26 February). The Miles Frost Fund, created in memory of Sir David Frost’s eldest son, has hit its £1.5 million fundraising target just two years after it launched.
Miles died in July 2015 from an undiagnosed heart condition called hypertrophic cardiomyopathy (HCM), a condition it’s believed he inherited from his father. The BHF estimates that up to 120,000 people across the UK could be living with this condition, which often has no symptoms but can cause a cardiac arrest without warning.
The Frost family were never offered the genetic testing that could have saved Miles’s 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 roll-out 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.
In Oxford, the award will be used to expand the current inherited cardiac conditions service at the Oxford University Hospitals NHS Foundation Trust by funding a Genetic Counsellor and Family History Coordinator to identify and support hundreds more people affected by inherited heart conditions like HCM.
Patients will be referred to the service from Oxford, Banbury, Reading and the surrounding areas.
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 (BRC). Understanding the biological consequences of genetic variations on the heart will take use closer to improved treatments for these conditions.
BHF Professor Hugh Watkins, the NIHR Oxford BRC’s Theme Lead for Genetic Medicine, helped set up the first genetic testing service for HCM in the UK at the John Radcliffe Hospital.
He 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.”
The Frost Family said: “Miles’s 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’s 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.”
Dr Anna Michell, Principal Genetics Counsellor in Inherited Cardiac Conditions at the Radcliffe Department of Medicine, 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 seen nearer to home by building partnerships with their local hospitals.”
As well as Oxford, the sites that have benefitted from the Miles Frost Fund are: London (Guy’s and St Thomas’ NHS Foundation Trust, Inherited Cardiac Conditions Clinic); 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); and Belfast (Inherited Cardiac Clinic Service, Belfast Health and Social Care Trust)
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