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Bereaved Lancashire mums who lost their children
to sudden death syndromes have criticised health trusts in the country that
have ignored vital guidelines that could help tackle the rare condition.
Ruth Lowe, who lost her 12-year-old son Andrew in
2004, and Sue Jarvis, who lost her 17-year-old daughter Louise, say they are
concerned at claims by the charity Cardiac Risk in the Young that many
trusts have still not sent out strategies to tackle the issue.
They are calling for PCTs not to ignore guidance
on arrhythmias and sudden cardiac death in young people that was implemented
in the National Service Framework for Coronary Heart Disease 12 months ago.
Preston PCT has systems in place for GPs to assess
specialist cardiac services.
But like Chorley and South Ribble, Fylde and Wyre
PCTs, it has not formulated its own strategy, as recommended by the
guidelines.
Ruth, of Woodplumpton, whose son died suddenly
outside Tokyo Jo's nightclub on Easter Monday 2004, said:
"It is great that Sudden Arrhythmia Death Syndrome
(SADS) has been acknowledged but it is vital the requirements of the new
chapter are implemented.
"The framework requires trusts to provide
information to relatives and for the surviving members of the family to be
screened.
"The latter is vital as many causes of SADS are
hereditary, with few obvious symptoms. We would have welcomed this
support at a time when it was most needed, as after Andrew's sudden death we
were left with many unanswered questions."
Sue Jarivs, of Clayton-le-Woods, who lost her
17-year-old daughter Louise to Sudden Arrhythmic Death Syndrome, said:
" I find it appalling hardly anything else has
been done, especially when Lancashire is full of young people.
"I'm pleased these initiatives are in place but
the fact is the PCTs still don't have their own strategy, as recommended in
the guidelines. And the services they do have are not being promoted.
Most people had never heard of these developments until today."
Janet Ashcroft, health improvement manager at
Preston PCT, said: "Progress has been made. The Cardiac Clinical
Network for Cumbria and Lancashire has established an Arrhythmia Advisory
Group."
Colette Gill, director of modernisation and
service development at Chorley and South Ribble PCT added:
"The reason PCTs have no individual strategy is
because these services are commissioned by Specialised Commissioning Teams."
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