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An MP says a rare heart disorder is still claiming
lives despite new NHS guidelines.
Stockton South MP Dari Taylor, supported by Durham
North MP Kevan Jones, led the way on calls for more screening of at-risk
youngsters by introducing a Private Member's Bill - Cardiac Risk in the
Young (Screening) Bill - in 2004.
The Bill, backed by the charity Cardiac Risk in
the Young (Cry), received the support of more than 100 MPs and resulted in
the publication, in March last year, of a new National Service Framework
chapter on arrhythmias and sudden cardiac death.
Chapter eight was intended to act as a model for
best medical practice. It says that young people who display
recognised symptoms of cardiac conditions should be offered appropriate
clinical assessment and treatment.
If a young person has lost a family member from an
inherited cardiac disease, they should be offered urgent screening, support
and, where necessary, treatment in a dedicated clinic.
But Mrs Taylor has told The Northern Echo that
Chapter Eight is not working as she had hoped it would.
Ten days ago, The Northern Echo reported how Kasia
Ber, 17, died at her home in Horden, East Durham, on December 28, last year.
It was discovered only after she died that she
suffered from a genet5ic heart condition known as Long QT syndrome.
Her aunt died from a sudden arrhythmia and her
mother, Diane, takes beta blockers to treat Long QT syndrome.
Since Kasia's death, her two cousins have been
diagnosed with the condition.
Levon Morland, from West Rainton, County Durham,
collapsed and died as the result of a rare heart syndrome four years ago,
aged only 22.
Mrs Taylor said: "Between four and eight young
people - usually fit, healthy and active - die each week from a cardiac
condition that could have been diagnosed through screening or by recognising
acknowledged symptoms of cardiac conditions.
"These symptoms include fitting, blackouts or
breathlessness.
"With the appropriate treatment, many of these
young people would be alive today. but how many more are there that we
have not heard about?
It is now 21 months since this chapter was
published, and it is clearly not working as intended or as I had hoped.
"It appears that those responsible for delivering
the chapter are unaware that it exists. The straight fact is that GPs
are continuing to fail to diagnose and act upon known symptoms of conditions
that can cause sudden cardiac death in young people."
Mrs Taylor said she had written to Health
Secretary Patricia Hewitt and Professor Roger Boyle, the national clinical
director for heart disease at the Department of Health, asking for an urgent
meeting to discuss and find a solution to the problem.
She said: "I spoke to Patricia Hewitt on Tuesday
night, and her instant reaction was one of dismay. She asked me to
send her all the information I have, and I have included The Northern Echo
report on Kasia Ber."
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