Thousands of young people with potentially fatal heart conditions are not being given screening tests which could save many lives.
Every day in Britain, one person aged under 35 dies from the range of conditions known as sudden arrhythmic death syndrome (SADS).
NHS guidelines recommend screening for families with genetic heart problems.
But an investigation for BBC Radio's Five Live Report reveals failures in procedures mean many are not tested.
Under current guidelines, screening on the NHS should be offered to anyone reporting symptoms of heart problems, as well as the families of people who have already died from an unexplained heart condition.
But cardiologists report people with symptoms are not being referred and in many cases coroners are failing to correctly diagnose SADS as the cause of death.
There are around 400 deaths a year from SADS which campaigners say could be prevented if simple electrocardiogram tests were used more widely.
Kathleen Moody's daughter Mary died aged 18 after suffering a cardiac arrest at home in bed.
Kathleen, from Newry, Northern Ireland, says although her daughter had been suffering from tiredness, dizziness and breathlessness, she wasn't referred for an electrocardiogram (ECG) test.
"I took her to the doctors for about two years before she died. They tested her blood, but didn't suggest she should have heart screening or that she was at risk. I'm angry that a simple test could have saved my daughter."
Family history
Experts say taking family histories can also help identify a genetic risk. Kathleen says there had been six unexplained deaths in her family which should have acted as a warning bell.
"Until the law is changed and coroners have to refer hearts on to specialists we will not know the true figures"
But Alison Cox from the charity Cardiac Risk in The Young, says failures to correctly investigate some deaths means families don't always receive the correct diagnosis - with many deaths being wrongly labelled as from "natural causes" or as "inconclusive".
"Until the law is changed and coroners have to refer hearts on to specialists we will not know the true figures."
Affected families say lack of public awareness of SADS mean people are continuing to die as symptoms tend to go unnoticed. With about eight young people dying every week, SADS causes a similar number of deaths to meningitis.
The Department of Health currently has no spending budget to raise awareness of SADS.
Italian cardiologist Professor Dominico Corrado says testing has proved to be effective in Italy where screening is mandatory for all young people before taking part in competitive sport.
"Studies in the Veneto region show that comprehensive testing can reduce sudden cardiac death by around 90%. I would urge the UK to adopt the Italian model."
The current NHS guidelines on UK heart screening are due for review in 2008. A Department of Health spokesperson said: "There has been a thorough review of the available evidence and a [universal] screening programme would not be cost effective".
5live Report: Screen Test can be heard on Sunday 14 October at 1100BST or via the podcast at the Five Live Report website. The programme is made by All Out Productions.
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