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The
agonising wait endured by many families following the sudden – and
tragic – death of a child or partner could soon be over as London opens
the UK’s first ever ‘fast-track’ pathology laboratories to help analyse
the causes of unexpected cardiac death in ‘apparently’ fit and healthy
young people.
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It is
estimated that at least 12 young (i.e. aged 35 and under) people die every week in
the UK from this condition. However, due to a lack of awareness and
funding - that often leads to the incorrect or inconclusive recording of
the cause of death - it is believed that this figure could be the ‘tip
of the iceberg.’
The
new Unit (The CRY Centre for Cardiac Pathology – CRYCCP) is based at the
world famous Royal Brompton Hospital and was jointly established with
support from Imperial College London.
Funded by the charity, Cardiac Risk in the Young (CRY) – thanks to the
staggering efforts of a Surrey family [the
Hunters] who lost both a father and teenage
son to sudden cardiac death – the new centre will allow coroners to
refer cases directly and receive a full report of the actual cause of
death, usually within 2 weeks.
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Left to right: Rupert Hunter,
Stephanie Hunter and CRY Patron Simon Halliday. Their
fundraising efforts led to the creation of the CRY Centre for
Cardiac Pathology. |
Currently, some families have to endure a
wait of anything from three to eighteen months for answers after their
tragedy.
A
grant in excess of £200,000 has been awarded to one the world’s leading
pathological experts, Dr Mary Sheppard. A pilot of the service has been
run at the Royal Brompton for the past 10 months – during which time the
team has received direct referrals from almost 100 coroners across the
UK.
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Dr Mary Sheppard |
Dr Sheppard [left] says;
“Sudden cardiac death has a devastating impact on families – coming ‘out
of the blue’ with no warning and often no explanation. However, the
service at our new CRY Laboratories will enable us to play a small but
vital part in helping people come to terms with their loss by providing
the much sought after answers regarding the actual cause of death.
“Once families have
access to such information, the correct follow-up screening can take
place which could confirm whether any other members are living with the
same, hereditary conditions. Only then, can medical professionals take
steps to ensure that similar, unnecessary deaths are prevented in the
future.”
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The grant comes as a
result of two fund raising events in 2006, instigated by Simon Halliday
(double grand slam winner and member of the team of 1991 World Cup
Finalists) supported by the world of rugby and in memory of Howard and
Sebastian English who both died playing the game.
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Sebastian (aged just 15)
died 10 years after his father because his family were unaware he had a
genetic condition, highlighting the importance of a correct pathology
diagnosis for appropriate family referral and screening.
The launch marks
the 3rd anniversary of “Chapter 8”
of the National Service Framework for Coronary Heart Disease
(Arrhythmias and Sudden Cardiac Death).
Chief Executive and
founder of the charity, Alison Cox MBE [right], says; “For years, we have
been frustrated by the time it takes for families to get answers about
their tragedy – which happens without warning or explanation.
“Coroners sometimes do
not have the funds or know how to access a service where they can refer
complex cases to an expert pathologist, meaning that many deaths are
simply recorded as unascertained or, incorrectly, as an accident such as
epilepsy, asthma or drowning.
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Alison Cox MBE, Chief Executive of
CRY |
“This is unacceptable
for grieving families and leaves surviving relatives at risk of further
tragedies as these are genetic conditions and other family members need
to be screened.
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"A fast track service
accessing expertise, which also funds the coroner’s costs of this vital
investigation, is long overdue.”
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"The fast track services they [CRY] now offer, including funding
of coroners' referrals to the CRY Centre for Expert Cardiac
Pathology, are urgently needed - as is their innovative cardiac
screening programme, both in the community and sport."
Sir Clive
Woodward OBE |
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Michael Burgess |
CRY will be uniquely
funding referrals from coroners to the new laboratories – and it is
believed to be the first time that the Coroners service has received
such a grant.
The CRYCCP will also
allow Dr Sheppard and her team to carry out vital, ongoing research into
the pathology of the condition, leading to a greater understanding and
awareness of the syndromes that can cause sudden cardiac death in the
young.
Michael Burgess, HM
Coroner for Surrey and Coroner of the Queens Household [left]
spoke at the launch. Other speakers included CRY Patron Sir Clive
Woodward OBE, Professor Tony Newman Taylor, and Kevan Jones MP.
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Professor Roger Boyle
CBE, national clinical director for heart disease and
stroke, was unable to attend the event in person, but sent the following
statement of support which was read out: |
"I am delighted to give my support to the
Cardiac Risk in the Young Centre for Cardiac Pathology at the Royal
Brompton Hospital. I have had the pleasure of working with Alison and
her colleagues at CRY, and Mary Sheppard, for many years now and have
always admired their professionalism and dedication. But what has really
impressed me, as it has many others, is the sensitivity and
understanding they show in an area that can, and does, devastate
people's lives.
The CRY Centre for Cardiac Pathology
brings together these extraordinary people and these rare qualities. The
Centre will build on the good work already done to understand these
complex familial conditions, and through this help ensure that the right
information, advice, care, treatment and support are offered to those
that need it. I wish the Centre my very best wishes for the future."
Follow these links for photos of:
Speakers
CRY Patrons
Various Guests
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Click names below to hear the speeches made at the launch
(or click on 'Transcript' to open a
transcribed version of the speech in a Word document)*
* with thanks to Mel at The
Transcription Company UK (www.thetranscription.co.uk)
for producing these transcripts |
For more information,
please contact Jo Hudson or Tracey Thompson on 020 8786 3860 / 0770 948
7959 or email
jo.hudson@trinitypr.co.uk
Notes to editors:
CRY was founded in May 1995 to raise awareness of
Sudden Arrhythmia Death Syndrome (SADS).
As well as campaigning and lobbying, CRY also provide a
subsidised cardiac screening programme for young people (35 and under),
and provide counselling support to bereaved families and individuals who
may be diagnosed.
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