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.”
