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The
establishment of a national pathology database – which will provide vital
information about the frequency and demographics of sudden cardiac death as
well as an assessment of families linked to these tragic conditions – comes
just months after the charity opened its
new ‘fast-track’ expert pathology
Unit at London’s Royal Brompton Hospital.
CRY awarded a grant in excess
of £200,000 to one the world’s leading pathological experts, Dr Mary
Sheppard, to ensure that referrals from coroners of young people who had
died suddenly were analysed quickly and a cause of death given within 2
weeks.
At the time of the launch in
March (2008), Chief Executive and Founder of the
charity, Alison Cox MBE said:
“We
are delighted that the Department of Health has spearheaded this national
database. The way these deaths have been recorded has been the focus of
CRY’s campaign for over 13 years. Collating accurate national statistics has
been fraught with difficulties which have led to significant problems in
acknowledging that Young Sudden Cardiac Death is a major public policy
issue.
“In
1995 we were told it was 1 death a week, in 1999 - 4 a week and in 2005, at
least 8 a week. It is now acknowledged to be at least 12 young people every
week as illustrated by our campaign
launched in Westminster last month. This database will firmly establish
what we already believe, that this is still a conservative estimate.
“The
support of the Department of Health in this ambitious project is a
tremendous acknowledgement of the courageous tenacity of our bereaved
families who have not let these deaths be in vain. Every person has the
right to know why their
child has died. This database will not only help to understand the true
incidence of these deaths but in the future will help families to at least
know the name of the condition that caused these young sudden deaths.
“The impact of
being told that your child died of natural causes cannot be underestimated.
That is why CRY will continue to dedicate over £100,000 a year to the expert
cardiac pathology service in the UK. The CRY Centre for Cardiac Pathology –
CRYCCP – is one of the leading centres in the world and will work with this
new database to help unlock the tragic mystery behind theses deaths, whilst
continuing to ensure that
families receive a swift and accurate diagnosis about the tragic death of
the deceased.”
She concludes: “For years,
we have been frustrated by the time it takes for families to get answers to
their tragedy – prior to CRY’s fast track service families
have had to endure a wait of anything from 3 to 18
months for answers after their devastating loss.
“Coroners are sometimes
unable to access or fund a service where they can refer complex cases to an
expert pathologist. This means that many deaths are simply recorded as
unascertained or, incorrectly, such as epilepsy, asthma, drowning or
accidental death. This initiative will start the process of highlighting
these inaccuracies and is a strong declaration of just how seriously young
sudden cardiac death is being taken."
ENDS
For more information, or
to arrange an interview with Alison Cox for further comment about the new
national database or CRY’s ongoing work or to speak to a family affected by
young sudden cardiac death please contact Jo Hudson 020 8786 3860 / 0770 948
7959 or email
jo.hudson@trinitypr.co.uk
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