A mother is calling for primary care trusts to start acting to help prevent sudden heart defect deaths among the young.
Debbie Rugier's 17-year-old son Stephen died in his sleep and it was not until his inquest that she discovered he had a cardiac problem and his heart had simply stopped.
The campaigning group Cardiac Risk in the Young (CRY) said eight young people like Stephen die every week from existing heart conditions, many of which could be prevented by screening initiatives and better advice from doctors.
Some teenage victims of sudden cardiac death will have been to a doctor complaining of dizziness or breathlessness but instead of having tests are told they are suffering panic attacks or asked whether they are experimenting with drugs, said Alison Cox of CRY.
Sudden cardiac death is an umbrella term for at least eight largely genetic heart conditions which cause 400 people under 35 to die each year.
A year ago the government told PCTs they had five years to implement better referral programmes for people suspected of suffering from such heart conditions.
CRY said this should ensure doctors do not misdiagnose young people and it would also compel them to refer the families of victims for screening.
But research carried out by CRY found that only one PCT had started a strategy.
Debbie Ruggier said: "We need more people to be aware of what can happen. It wasn't until we lost Stephen that we found out about sudden cardiac death.
"It is important for doctors and hospitals to take action."
She added: "If they did blanket screening, Stephen might still be here.
"They have to do these tests – our children's lives are at stake."
In September last year 18-year-old Chris Rice collapsed and died while jogging along Hengistbury Head.
He had been a competitive swimmer from a young age until he was diagnosed with a heart defect at the age of 10.
He regularly saw specialists and gave up the competitive swimming but continued with other activities and sports he loved.
His mother Karen said: "we knew that Chris had a heart defect but that still didn't prevent his death. I feel that people have the right to know.
"But if you are going to send every child of school age for screening, where is the money going to come from?
"Thousands of people are walking around with this and they don't know they have got it.
"Fortunately we knew and I remember thinking if I had that right, why doesn't everyone?"
Deidre Selwyn, cardiac facilitator for South East Dorset Primary Care Trust, said the trust is looking into the issue on behalf of all PCTs in the area.
"Work is under way. The health authority have started compiling a strategy for the implementation."
A meeting will be held in September.