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Two years on from publication of the NHS
Chapter 8 strategy on Arrhythmias and Sudden Cardiac Death, leading charity
Cardiac Risk in the Young (CRY), has committed to fund coroner referrals to an
expert cardiac pathologist when a young person dies suddenly and the cause is
unknown.
This offer of expert help to coroners
provides an essential service for affected families. It will ensure they
receive a cause of death, but also enables identification of other family
members at risk of having a similar genetic condition. This will build on the
3 year
grant of £180,000 from CRY received by expert cardiac pathologist Dr Mary
Sheppard in 2006 to establish a research centre at the Brompton Hospital,
specialising in young sudden cardiac death (YSCD).
Dr Sheppard is a leading
academic and expert cardiac pathologist and will be collaborating with other
experts in the field of cardiac pathology to provide this essential service.
It is estimated that there are at least 400 young deaths each year resulting
from these conditions.
Coroner Bill Dolman says: "As
Medical Secretary of the Coroners Society of England and Wales I warmly
welcome the expert help being offered to coroners in investigating these
unexpected, tragic deaths. I am sure my colleagues will want me to thank CRY
for arranging and funding this important initiative. Although small in
numbers, these sudden unexpected deaths cause immense distress to families."
Without
expert pathology, families suffer the agony of not receiving answers to the
cause of their tragedy and remain unaware of the genetic implications. When
inquests are opened there can be interminable delays as coroners try to find
the reason for the cause of death. This project will end this unnecessary
distress and bring closure for the family allowing them to focus on the first
difficult steps of the reconstruction of their lives after their loss.
Alison Cox,
Founder and Chief Executive of CRY, says: “We have debated the problem for 2
years now. The reality is that the NHS currently faces a funding crisis.
Although this is not a government priority it is ours. We talk to affected
families daily and our job is to try to mitigate their distress at this
terrible time. These are genetic conditions and ensuring that the family are
referred to cardiac specialists after their tragedy is crucial. Our offer of
expert help for the coroners will release the current gridlock.”
CRY’s
commitment to fund this essential service is acknowledged as one of the most
important developments since the publication of Chapter 8 and marks a
monumental step forward in getting to the root causes of these conditions
Professor Gaetano Thiene,
President of the Association for European Cardiovascular Pathology, whose
research in the Veneto Region of Italy first alerted the world to the issue of
young sudden cardiac death said: "This news is exciting and I congratulate and
greatly admire CRY for taking this initiative. The role of pathology is an
important and rewarding one and Dr Mary Sheppard is an excellent choice to
drive this project forward. The CRY pathology initiative will certainly be a
great step forward for the prevention of juvenile sudden death in the United
Kingdom. I very much support this important project and the experience we
gathered in the Veneto Region of Italy will be at Dr Sheppard's disposal."
Dari
Taylor MP’s Private Members’ Cardiac Risk in the Young Screening Bill
supported by CRY in March 2004 was instrumental in securing the implementation
of Chapter 8 into the National Service Framework in March 2005.
This sets
out guidelines on how NHS services should identify and manage those at risk of
YSCD. However a survey
carried out in March 2006 by CRY showed that a staggering 97 per cent of all
Primary Care Trusts (PCT’s) said they had failed to develop a strategy for
implementing any of the new NHS guidelines outlined in Chapter 8. Yet progress
is now being made. Encouragingly, a further survey conducted in November 2006
by CRY, in partnership with the All Party Parliamentary Group for Cardiac Risk
in the Young, has shown that 13 PCT’s are now taking active steps to review
and improve their services as a result of Chapter 8.
CRY has
recently been appointed by the Department of Health as co-chair of the Sudden
Cardiac Death Group, demonstrating its level of expertise in understanding and
researching the causes of YSCD. CRY’s clinical excellence is overseen by Dr
Sanjay Sharma, newly appointed Director of Heart Muscle Disease at Kings
College Hospital London. The work conducted by CRY, Dr Sharma and renowned
sport scientist Professor Greg Whyte, has enabled important research into the
subject, including a focus on the effect of ethnicity on ECG results,
prevalence of cardiac disease in the young and the screening of athletes.
CRY works
to diagnose the various conditions that cause YSCD by running its own
screening programme and currently have a number of centers throughout the UK,
with another 5 centres planned 2007. CRY also screens in schools, in sports
clubs and has raised over £400,000 for cardiac medical equipment in hospitals
and GP surgeries.
Another
vital part of CRY’s campaign is to raise awareness of these conditions with
the help of prominent patrons such as David Walliams, Sir Steve Redgrave and
Ian Botham.
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For more
information, photographs, or to attend the launch please contact Tom Fern,
Alice Perry or Jo Sheperd on 0870 240 5536, or email
cry@redheadpr.co.uk
* Young
people refers to those 35 and under
Notes to editors:
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CRY is a charity founded in May 1995 to raise awareness of Cardiac Risk in
the Young - Sudden Cardiac Death,
Sudden Death Syndrome
(SADS)
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CRY offers bereavement support to those who have suffered a tragedy through
a network of specially trained individuals who have themselves suffered a
similar loss
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CRY promotes heart screening, ECG Testing Programmes & contributes to medical research
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CRY funds the CRY Centre for Sports Cardiology at the Olympic Medical
Institute
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CRY’s newest patron is highly acclaimed Little Britain comedian, David
Walliams
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