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It is remarkable that in this, CRY's 10th
Anniversary Year, we are able to celebrate the introduction of a new chapter in
the National Service Framework (NSF) on Arrhythmias and Sudden Cardiac Death.
It is widely acknowledged that this new chapter was instigated by the support
received for Stockton South MP Dari Taylor's Cardiac Risk in the Young Screening
Bill (see CRY in Parliament page), debated in the
house last March and backed by CRY's successful lobbying of MP's. Dari's Private
Member's Bill "pushed a foot in the door" which had previously been kept firmly
shut. Lobbying through our Postcard Campaign will maintain this pressure with
the aim being to engage every part of the UK in our efforts to keep the profile
on young sudden cardiac death.
August: The response we have had since the publication of our SADS
booklet last February which has a dedicated
www.sads.org.uk
website, and Dari's Bill has resulted in a 30%+
increase in our office workload and the employment in August 2004 of 4 new
members of staff taking our total to 13.
This included a researcher to undertake a study addressing the issues raised in
the NSF document, specifically focusing on families who had suffered a
bereavement due to a young sudden cardiac death. Anecdotal evidence from
interviews with those affected by a sudden death, suggested that young people
with heart conditions were being treated differently to older people with heart
conditions - with young people finding it much harder to get their heart
concerns taken seriously. Thus, in focusing on heart conditions in the young
(under 35), the study sought to explore this under-researched area.
Our consultation document went to 600 selected bereaved CRY families. 150 (25%)
respondents yielded important research data and our first analysis of this
information has been submitted to the Department of Health.
The South West launch of our Raising Awareness
Postcard Campaign was
organised in Exeter, Devon by our newly elected Representative Chris Pitman.
Chris had been a successful athlete until he collapsed and was diagnosed with
cardiomyopathy, and then had to redirect his ambitions to focusing on the
coaching of elite athletes. Special thanks to Chris and the Exeter Arena for
allowing us to use this venue, our supporting families from Devon, Somerset and
Cornwall, and Ironbridge Runner for their sponsorship.
September: 20 CRY delegates were invited to attend the Department
of Health's consultation meeting for the
new NSF chapter. This new
chapter on Arrhythmias and Sudden Cardiac Death was called by the National
Clinical Director of Heart Disease Sir Roger Boyle, who is Chair of the
committee of experts who directed 4 sub-groups. The over-riding view from our
delegates was that though there was great potential for progress to be made,
young sudden cardiac death represented such a small statistic (4%) of the total
deaths, that there was a real danger of our tragedies being obscured by sudden
death in the older age groups.
This threat was the inspiration for our Postcard Campaign.
 The
North East Postcard launch was organised by Maralyn Bowen our Divisional
Representative, at Redcar, Cleveland. The contest for the Hartlepool Labour seat
vacated by Peter Mandelson was belatedly announced to be on the same day as our
launch which unfortunately meant our supporting Labour MP's were unable to
attend.
However Dari made a
diversion from Hartlepool through Redcar to join our launch making an
impassioned speech supporting the endeavours of CRY families for her Bill. After
being interviewed at length about the campaign by Tyne Tees TV, Dari spent time
talking to each of the families that attended before returning to canvassing
support in Hartlepool for her colleague Iain Wright - one of whose first
decisions on being elected was to join our CRY APPG.
Special thanks to Maralyn Bowen for organising this event, our supporting
families from Tyne & Wear, Cleveland, and Durham; Thorn Lighting for their
sponsorship in memory of Levon Morland, the Redcar Cricket Club for donating the
venue and lunch, and Ann Wilson for the delicious iced fruit cake she made that
included the name of every young person on the North East Postcard.
October: Some of you might remember reading the dramatic story 6
years ago of 21 year old Julie Mills who collapsed and was rushed to 3
successive hospitals as medics fought to save her life. She arrived at the John
Radcliffe Hospital 20 minutes before full organ failure and was put on life
support with the use of an artificial heart. Julie's heart was rested for 5 days
while the virus Myocarditis ravaged her heart. Her miraculous survival led to
her subsequently re-evaluating her life and I am most grateful that in the
re-organisation she has volunteered to help us and will be managing our
Surgery Supporters programme.
 A
special thank you (as always) to Dr Sanjay Sharma for giving up precious family
time on a beautiful Sunday afternoon to attend the final 2004 meeting of our
Surgery Supporters Club. Our intrepid travellers come from all parts of the UK
to attend these unique meetings, have counselling, spend time with their peers
and to talk informally to a consultant cardiologist which is undoubtedly the
highlight of the event.
This month witnessed the first of 5 Sudden Cardiac Death and Screening sub-group
meetings held in the Department of Health. The select group chaired by CRY
Patron Professor Bill McKenna had 3 CRY representatives invited; our Chairman Dr
Greg Whyte, Dr Sanjay Sharma and myself.
The first meeting
addressed Professor McKenna's full agenda, debated screening issues and included
an idea developed by Robert Hall (Medical Director of the Cardiomyopathy
Association) of the implementation of an appropriate Referral Pathway so that
there would be no further danger of families 'slipping through the net.'
Robert's initiative anchored the importance of consistency in dealing with both
the event of sudden cardiac death, and prevention, and has provoked on-going
discussion at the highest level as to how these should best be handled.
The South Postcard launch was held in Charlbury, Oxford. Special thanks to Hugh
Mulcahey, for organising this event, our supporting families from Hertfordshire,
Hampshire, Buckinghamshire, Berkshire, and Oxfordshire who attended, The Bell
Hotel for donating the venue and the Royal Bank of Scotland for sponsorship in
memory of their employee Scott McCollin.
November: Our 2nd sub-group meeting focused on the crucial role of
the Coroner. Professor McKenna and I also collaborated on an information booklet
produced for members of the sub-group, identifying their area of expertise and
pin-pointing changes they would like implemented. This booklet was given to all
those that attended our sub-group meetings, and the Department of Health.
The North West Postcard launch was held in Stalybridge, Greater Manchester.
Special thanks to Dave Pover for organising this event; the Stalybridge Football
Club for donating the venue and our delicious hot soup, our supporting families
from Greater Manchester, Lancashire, Merseyside and Cheshire who attended and
contributed to the lunch and Irene Wickers for securing sponsorship from JDI
Flooring in memory of Neil, with a further contribution from Beach Displays in
memory of Andrew Parr.
ITV Granada Report covered the launch highlighting
the sudden death of brilliant young footballer John Marshall who died in July
1995 the day he was due to join Everton after attending the FA School of
Excellence in Lilleshall for 2 years. An excruciating aspect of John's tragic
death was that if he had lived another 10 days his condition would have been
identified at the screening of the Everton youth squad. This was the first
cardiac screening event in football and organised by team physiotherapist Les
Helm. The story of John Marshall and the support of the Marshall family launched
CRY in 1995.
Stalybridge and Hythe MP James Purnell squeezed in a flying visit to the launch,
leaving a filming commitment to talk to us and the press, before rushing onto
his next appointment in Spain.
December: The 3rd meeting of our sub-group addressed genetics.
Professor McKenna also invited a contingent from Northern and Southern Ireland
to attend including Michael Green, Trustee of CRY Ireland, who have been
collaborating with the instigation of a specialised sudden cardiac death clinic
at the Mater Hospital in Dublin.
 The
evening of the same day found the CRY team at our first APPG meeting in the
House of Commons. Guest speaker Sir Roger Boyle explained to MP's his hopes for
the new NSF chapter congratulating CRY on their "exemplary lobbying" and
commending the progressive rise in awareness of sudden death conditions in the
House, amongst the general public, and the clinical groups.
Sanjay Sharma outlined to MP's the medical issues that we were confronting and
the meeting concluded with the celebration of Dari's 60th birthday with a cake
we had bought to mark the occasion to surprise and thank her for the fantastic
contribution she has made to our progress. Our APPG has enlarged from 7 prior to
Dari's Bill to 65 at the present time.
.jpg) Shortly
before our Christmas break we totalled the number of cards sold this year which
amounted to a staggering 21,700 cards = £7,160 gross. Very special thanks again
to John Bennett whose beautiful painting for CRY's 2004 Christmas card, in
memory of his daughter Laura, was of Bradley Village Church, Staffordshire.
I would also like to
take this opportunity of thanking our office volunteers - David Meikle and Pat
Ure who have done such sterling work for us every since they joined CRY in 1996;
June Dollard our mailshot expert, without whom our unprecedented number of 1994
mailshots could not have materialised; and Elaine Dunne and Joan Clarke who
spent so many hours in the office each week translating our Christmas card
orders into deliveries.
Special thanks go as well to Maureen Ward, who, after 8 years has retired as our
doughty Representative in Wales. Maureen was one of the first families to
organise a CRY screening, spoke inspiringly at our Screening Seminar in
Wolverhampton in 2000 about the importance of never giving up the fight for our
screening programme, and has been an ardent supporter of CRY since she first
joined us in 1996 after the death of her son Caradoc.
Also special thanks to Sheila Clarke who has now retired from the job of
Volunteer Merchandise Distributor after 7 years of energetic and efficient
supervision of the mailing of CRY merchandise from her home.
Our 10th Anniversary year holds great promise for CRY and we are hopeful that
our first Raising Awareness week from June 11 - 18 will further promote our
goals and highlight our achievements.
To mark our first decade we have designed a 10th Anniversary badge, available
from the office. Our absolute hope and belief is that, thanks to the incredible
commitment of our supporters whose call for change has been heard in the
corridors of power, we can finally afford to be hopeful. We can now trust a
future that offers unprecedented grounds for optimism to reduce the toll of
suffering through young sudden cardiac death, and recognises that our tragedies
can no longer be designated as rare conditions that affect one in a million
people.
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