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The cascade of events
that have propelled CRY forward into August 2004 began as soon as we returned
from our Christmas break. On January 5 after the successful 2nd reading of
her Cardiac Risk in the Young (Screening) Bill Dari Taylor MP promptly invited
our consultant cardiologist Dr Sanjay Sharma and CRY Chairman Dr Greg Whyte to
be her medical advisors to draft the medical case for screening for her debate.
Our mailshots appealing
for you to contact parliamentarians in support of Dari's Bill resulted in
hundreds of letters arriving on the desks of the Department of Health, MP's,
Ministers and even the Prime Minister. It produced 80 press articles in 8 weeks
and crucially softened the previously intransigent position taken by the
Department of Health to the point that they ultimately agreed that a gap in
service provision had been identified through Dari's Bill. Doreen Harley
(Carlton) and Maralyn Bowen (Tyne Tees) had TV slots highlighting Dari's Bill
and an interview with Gloria Moss was syndicated to 32 local radio stations.
 The
BBC Politics Show gave a powerful presentation on Dari's Bill led by Ian
Botham's views on screening and also interviewing Sanjay, Jeff Morland Chair of
Labour Party North, whose son Levon died of Wolfe Parkinson White (WPW) and Dr
David Driver an international athlete being treated for WPW who is a member of
the CRY Surgery Supporters Club. Dari was in the studio outlining how totally
unacceptable it is that up to 8 young people are dying of sudden cardiac death
each week and how the Department of Health and medical establishment had to
acknowledge that something must be done.
In February our long
awaited SADS booklet, written by Dr Elijah Behr
(Clinical Research Fellow British Heart Foundation Scholar) and funded by a
grant from the British Heart Foundation, was released onto our own
www.sads.org.uk website. The
significance of having an independent CRY SADS website exclusively for this
definitive booklet means that a family bereaved through a young sudden cardiac
death has instant access to downloading this information.
On March 10 we held our second Parliamentary Reception. This launched 4 of
the 6 prospective CRY Clinics in Edinburgh, Leeds,
London and Colchester and also focused on Dari's Bill. Minister of State
for Health John Hutton and Shadow Minister for Health Tim Loughton spoke with
great fervour in support of Dari's Bill and Dari spoke passionately about our
work and the contribution CRY families had made to the progress of her Bill.
TV Sports Commentator Jim Rosenthal spoke movingly of the impact of the loss of
their baby son on his friends Mark and Debbie Loveday. The room was packed
with MP's that were surprised and delighted to meet the Founder Members of our
Surgery Supporters Club who made a huge impact on the evening with their
personalities, vigour and jaunty humour.
March 12 found 20 CRY supporters in the Strangers Gallery listening to the
excellent debate Dari had orchestrated in the House. This culminated in the
announcement by Health Minister Melanie Johnson of the formation of an Expert
Group on Arrhythmia and Sudden Cardiac Death that will include CRY in the
consultation process for the new chapter to go in the National Service
Framework. This offer allowed Dari to withdraw her Bill and was confirmed with a
Press Release immediately issued by the Department of Health.
 Dari
said that "Almost 100 Members of Parliament from nearly all political parties
offered their support. A number of these were MPs already involved with CRY and
my Parliamentary colleagues. However, a substantial majority were MPs who
had agreed to support my Bill because they had been asked to do so by their
constituents - invariably members of CRY. The working group has the
potential to deliver all that we asked for - so I am broadly happy, but very
aware that we are not yet home and dry. The terms of reference include all that
we asked for, as well as some other subjects; we will have to make sure the
other subjects do not swamp our own. The membership of the group will include
experts from CRY, as well as representatives from other groups; we will have to
ensure that the CRY voice is heard, and the families who have brought this group
into existence receive the credit they deserve. The tool of an NSF chapter has
all the power we need to implement our goals; but we must make sure that the
chapter is comprehensive".
(taken from Julie's interview in Kids for CRY - Update issue 37)
 April
focussed on our major annual fundraising event the
London Marathon. Greg's team of CRY
heart costume runners were not only the first full costume runners across the
finishing line but also initiated and participated in some gruelling research
which entailed having blood taken the day before the race, immediately after
(giving blood after just running 26+ miles demands a high pain threshold!) and
the following day. Greg's 2003 picture running in a CRY heart is reaching
iconic status being one of 5 vignettes used on the London Marathon website, and
was also used in 2 other national magazines promoting this prestigious event.
Many thanks for all those intrepid runners who not only gave their all for CRY
in achieving record sponsorship (over £100,000 raised) but to those that
courageously gave blood 3 times in 36 hours to help Greg's Research. Our
new Screening Manager Mat Wilson both ran in a CRY heart and supported a huge
CRY heart on his shoulders with Kanga and Teddy clinging on enjoying the ride,
and the view! Mat's extraordinary time carrying his double-whammy of CRY
tack of 4.26 was "the hardest marathon I have ever done - now lets see what we
can do next year….."
April 29 Kevan Jones, MP North Durham & Chairman of CRY Parliamentary All Party
Group introduced an Early Day Motion (EDM)1103 "That this House congratulates
CRY for raising awareness of Sudden Cardiac Death Syndrome; applauds CRY for the
support it offers those who have suffered loss from sudden cardiac death;
praises its promotion of heart screening as a simple way of diagnosing most
cardiac abnormalities; notes the tremendous contribution CRY has made to medical
research into Sudden Cardiac Death Syndrome"
So far 106 MP's have signed. However the EDM is still open and if you refer to
the CRY website / CRY's work in Parliament, for
this list of MP's you will be able to see if your MP has supported us and if not
perhaps can ask him/her to do so. May 4 The BBC Northern Ireland Spotlight
programme featured Greg giving a superb explanation of how these conditions
impact on the heart and the importance of
screening. The programme referenced our screening programme to a viewing
audience in shock after 2 of their top athletes had died
suddenly within one month.
May 29 saw the CRY team at Caroline Gard's launch of our first CRY ECG testing
clinic in the cardio-thoracic unit of Colchester General Hospital an event
attended by our Patron Mark Cox and local MP's Ivan Henderson and Bob Russell.
 June
11 was our annual Bereavement Support Day at the Institute of Child Health. Greg
introduced our speakers Professor Bill McKenna, Dr Elijah Behr, Dr Sanjay Sharma
and the President Elect of the Coroners Society, Michael Oakley. Once
again this annual event offered a unique opportunity for bereaved families to
meet, have the opportunity of asking questions from experts
and the chance to get to know our Bereavement Supporters whose training has been
funded by our Department of Health 3 year grant of £105,000.
 July
4 was The Wimbledon Mens Singles Final and produced a surprise for our
supporters (and over 100 million viewers worldwide that tuned in), when they
heard Sue Barker announce that 14 year old Laura John from the CRY Surgery
Supporters Club resplendent in her sky blue CRY polo shirt, had been selected to
toss the coin for
Roger Federer and Andy Roddick. This was an initiative of 2 times Wimbledon
semi-finalist and past Davis Cup Captain Roger Taylor who chose CRY as his
charity for this years event.
Five Live ran a
documentary "Sporting Chance" about Sudden Cardiac Death in the young and
featured the tragedies of top athletes Laura Moss and Cormack McAnallen. Prior
to the programme, I was invited to the studio to discuss the merits of screening
on Julian Worricker's Sunday Morning programme in a debate with Professor Stuart
Logan, epidemiologist for the National Screening Committee speaking from the
Exeter studio. The programme included interviews with Dr Domenico Corrado
explaining the importance of the Italian screening programme, Dr Alan Hodson FA
Medical Director on their screening initiative and CRY Patron Professor Bill
McKenna's overview on screening.
On July 14 Dr Roger Boyle, National Clinical Director of Heart Disease and Chair
of the new NSF chapter on Arrhythmias and
Sudden Cardiac Death confirmed that Sanjay and Greg would be members of the
sudden cardiac death and screening group
being chaired by CRY Patron Professor Bill McKenna.
 July
15 found the CRY team launching our
Postcard Campaign in
the House of Commons, an initiative of Kevan Jones. This national campaign was
covered on the BBC Health Home Page for one week and is designed to run in
tandem with the consultation process for the new NSF chapter to ensure that
young sudden cardiac death remains a focal point for consideration and to make
sure - as Dari said - that CRY's voice is heard. Our Postcard Campaign
highlights up to 8 deaths a week and will be launched in a different part of the
UK each month with a different postcard representing 8 young deaths from each
area. 1,500 new postcards will be printed each month and special thanks to Rob
Thorne who has subsidised the printing of the postcards in memory of his son
Nicholas. Postcards will go to MP's, asking them to support CRY with this
fantastic window of opportunity that Dari has achieved for us and our
fundamental goal - the crucial issue of prevention of young sudden cardiac
death.
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