New coroners’ advice could save hundreds of lives

21 January 2014        

Category: Research

Father and son

Coroners could save lives by recommending genetic screening to the relatives of people who die suddenly from a heart condition.

We have developed new guidance with the Chief Coroner of England and Wales to ensure that if someone dies from an inherited heart condition, the coroner recommends directly to relatives that they are screened as well.

Around 600 people aged just 35 or under die suddenly each year with apparently no explanation or cause of death, leaving families shocked and distraught. Often the cause is due to an inherited heart condition. Signposting family members to their GP for a referral to a cardiac genetic clinic could save the lives of siblings and children of those affected, by detecting the same potentially fatal condition and prompting immediate treatment and monitoring.

Our Medical Director, Professor Peter Weissberg, said: “The death of a loved one can sadly be the first time people find out about an inherited heart condition in their family. Yet, even after a ‘suspicious’ death, family members are not always screened themselves. Their life could be in danger and their family could be devastated all over again – something a simple blood test could set right.

“We are delighted the Chief Coroner is supporting this important guidance. It will save lives and prevent families suffering a second, devastating loss.”

A mother's story

Luke and Suzanne Morton

Suzanne Morton lost her 20-year-old son, Luke, last year to undiagnosed Long QT syndrome. As the first anniversary of her son's death approaches, Suzanne said: “It’s a mother’s instinct to want to protect her children. I couldn’t protect Luke from a heart condition I didn’t know he had.

"But, by telling Luke’s story, I hope I can prevent other parents from going through the pain of losing a child so suddenly.

“That’s why I’m getting behind these new guidelines for coroners, which will make sure that families are screened to see if they are carrying an undetected heart condition. Even if it even saves the life of one young person, it’ll be worth it.”

If someone in your family has been diagnosed with or died from a suspected inherited heart condition, you can call our Genetic Information Service on 0300 456 8383.