After Mike died the whole family realised they had to get tested
19:21, 21 Jul 2025Updated 19:23, 21 Jul 2025
Simon Clarke lost his older brother Mike to a heart attack in 2015(Image: NHS Cheshire and Merseyside)
A dad said he still has “unanswered questions” after his brother died suddenly. Simon Clarke, 31, lost his older brother Mike in 2015 after he suffered a heart attack and collapsed during a football match. Despite stents being fitted, he died one week later.
The death of his brother at the age of just 29 led to Simon discovering a hidden genetic condition – and a life-saving diagnosis for multiple members of his family. Blood tests revealed that Mike had high cholesterol, which was something Simon had always struggled with but never fully understood.
Simon, from Winsford, said: “After my brother’s death we all went for tests, I was found to have high cholesterol too and received support at Leighton Hospital’s lipid clinic. Medication helped, but there were still unanswered questions – why was this affecting so many of us?”
That question eventually led to a turning point when Simon’s consultant referred him to a new pilot service screening at Liverpool Heart and Chest Hospital for familial hypercholesterolaemia (FH) – a hereditary condition that causes extremely high cholesterol from birth and significantly increases the risk of early heart disease if left untreated.
Simon underwent genetic testing through the service and a few months later received confirmation that he had FH. He said: “It was hard to hear – no one wants a lifelong condition – but it wasn’t really about me. It was about getting answers for my family.”
He added: “The genetic testing means I now know I have a condition that, even with diet and exercise, will always be present. It allows us to plan and make sure that when the children in our family reach the age where they can be tested, we take that step and don’t ignore it.”
Simon’s family were tested after his diagnosis and it was discovered Mike’s son, 13, who was just four when he lost his dad, also tested positive for FH and has now started medication.
Simon added: “He’s been on treatment since he was 11 – that’s two years of risk reduction already. We can’t change what happened to my brother, but we can try to stop it from happening again.”
Simon’s story is just one of many that highlight the impact of the FH genetic testing pilot launched in 2022 across Cheshire and Merseyside. Now, the service has been commissioned on a recurrent basis by NHS Cheshire and Merseyside, with support from Health Innovation North West Coast.
The service is delivered by Liverpool Heart and Chest Hospital NHS Foundation Trust and offers genetic testing to individuals with suspected FH, followed by family cascade testing for first-degree relatives – parents, siblings and children. Those diagnosed receive a personalised care plan, including lipid-lowering therapy.
Professor Rowan Pritchard Jones, NHS Cheshire and Merseyside’s Medical Director, said: “Early identification of familial hypercholesterolaemia is vital. With the right genetic testing and follow-up, we can reduce the burden of premature heart disease and intervene before complications develop.
“The early detection and treatment can bring an individual’s life expectancy back to near normal and the cascade model helps entire families. It’s a brilliant example of targeted, preventative health care.”
Professor Ian Ashworth, Director of Population Health at NHS Cheshire and Merseyside, added: “The Familial Hypercholesterolaemia service has already proven to be lifesaving by detecting a condition that is frequently missed. Simon’s story shows the difference it can make to an entire family.
“We’re pleased to have worked closely with Health Innovation North West Coast who have supported us with their expertise and our work to ensure the service is now commissioned.”
Health Innovation North West Coast’s Project Manager, Theun van Veen, said: “The importance of testing for Familial Hypercholesterolaemia is clear so we’re delighted to have played our part in making sure the pilot became permanent.
“Many people have worked hard in different parts of the system to make sure it happened which shows the value of true collaboration.”
To find out more about diagnosis and treatment of FH visit the HeartUK or BHF website.
