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A mother is calling for primary care trusts to
start acting to help prevent sudden heart defect deaths among the young.
Debbie Ruggier'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 the other activities and sports he
loved.
His mother Karen said: "We knew that Christ had a
heart defect but that still didn't prevent his death.
"I feel that people have the right to know.
"But if you re 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 in under way. The health authority
have started compiling a strategy for the implementation."
A meeting will be held in September.
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