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2007 has been another year when we have again
taken on four more staff to cope with the tremendous progress in the
development of our services. This includes receiving endorsement from the
Department of Health for our fast track services for pathology, screening,
and support; setting up of the CRY Centre for Cardiac Pathology at The Royal
Brompton under Dr Mary Sheppard which uniquely includes the funding of
coroners referrals requiring expert cardiac pathology; employment of a
Screening Administrator to co-ordinate online bookings; and the training of
our third group of Bereavement Supporters under the aegis of new course
tutor Andy Usher who has also taken on the role of Bereavement Support
Co-ordinator.
May
Ray Wilkins becomes CRY Patron
I am delighted that former international
footballer Ray Wilkins MBE (left) has become a Patron.
Midlands Regional Bereavement Support Day
(May 12)
32 people attended this event in Birmingham at
the Solihull Arden Club. They were divided into five small groups, each one
being supervised by a CRY Bereavement Supporter. Appreciating the luxury of
time to talk, share experiences, listen and to learn they were not alone
were comments made at the end of a very emotional day.
www.c-r-y.org.uk/bereavement_support_day.htm
CRY Chatroom – Talking Point
In response to popular request we have launched
Talking Point, a place where young people (aged 35 and under) who have been
diagnosed with a life-threatening condition can talk to other young people
in similar circumstances. So that users of the CRY chatroom have the
opportunity to be online at the same time we would encourage them to log-on
Monday evenings from 7pm. However, please note that Talking Point is not for
the bereaved. If you would like to talk to a Bereavement Supporter please
call the CRY office.
www.c-r-y.org.uk/talkingpoint.htm
June
CRY Representative on TV (4 June)
CRY Divisional Representative for the East of
England and Bereavement Supporter Caroline Gard was featured on Anglia TV
talking about her clinic in Colchester on 4 June. Caroline's determination
and commitment in achieving her goal to introduce regular opportunities for
screening in her area has received tremendous support from her community who
have raised over £100,000 for CRY's screening programme.
This month also saw publication of Dr Jonathan
Holliday's article on sudden cardiac death in MIMS Cardiovascular (Volume 2,
Number 3, 2007). Raising awareness of SCD in this academic journal
circulated to all GPs has been something Jonathan has been focused on
achieving for some time. There have been countless incidents of GPs not
identifying clear cardiac symptoms in young people that result in appalling
unnecessary tragedies, and having the support of such a pre-eminent doctor
raising awareness and supporting screening has been of considerable
importance in the development of our schools screening programme. Jonathan
is the school doctor at Eton College, which became one of the first private
schools to introduce a screening programme and has led to significant
interest from others in the field of education.
CRY Family Conference Day (9 June)
For the last four years we have run an Annual
Bereavement Support Day, incorporating both expert medical information and
workshops for those bereaved by a young sudden cardiac death. Evaluation
forms received suggested that those who found the expert medical information
helpful would have liked more time spent on these talks (particularly
requesting the opportunity to ask questions) and those who benefited from
the bereavement workshops said they would have liked more time for
bereavement support.
So from 2007 I decided to split the day into two
separate events with an Annual Family Medical Conference and Regional
Bereavement Support Days to be held in different parts of the country
throughout the year.
The Family Medical Conference was held at the
Institute of Child Health in London. We were again fortunate enough to have
our expert consultant cardiologists Dr Sanjay Sharma and Dr Elijah Behr
speaking and explaining the life-threatening conditions that can affect
young people. Expert cardiac pathologist Dr Mary Sheppard and Her Majesty's
Coroner Michael Burgess also explained their roles after a sudden cardiac
death. These talks were followed by workshops where speakers in small groups
addressed any questions. The day was considered informative and helpful by
those bereaved families seeking to understand how it is possible for a fit
and healthy young person to die from a heart condition that they have no
idea they have.
www.c-r-y.org.uk/family_conference_day.htm
Heart Screening Awareness Partnership (18
June)
We were absolutely delighted that our Patron
David Walliams could lend his considerable support to the launch of the
Heart Screening Awareness Partnership, a joint initiative between CRY and
Philips Medical Systems. Promulgating the message in the community that
heart disease is not just a problem for the elderly – it kills at least 8
young people every week in the UK – is an uphill battle but one crucial to
win as so often clear cardiac symptoms go unrecognised by both the public
and medical personnel.
David made a very significant contribution to
the launch of the partnership by making a DVD that included Bradley Farrow
and Jack Mason, members of CRY’s Surgery Supporters Club (www.c-r-y.org.uk/ssgroup.htm).
The DVD, which is available on our website, shows young people that
screening is not an intimidating process.
As David says, "The screening process is so
easy, it tickles a little and it's a bit funny seeing inside your heart. But
the doctors are very good at what they are doing, so you should not be
scared. The tragedy is that the deaths of so many young people from cardiac
problems are preventable. The support we have from Philips will help us
raise awareness and get more young people into the screening centres."
The sooner a patient is diagnosed, the more
quickly support can be offered to help manage any situation. Philips is
donating advanced medical equipment that will facilitate screening and
research.
Gala Dinner (23 June)
Andrew Castle, GMTV Presenter and former Great
Britain Davis Cup Player, hosted a gala dinner in central London WinTennis,
who divided profits from the event with CRY. Celebrities attending included
Britain's Davis Cup Captain John Lloyd, Peter Fleming who, with John
McEnroe, was the dominant men's doubles partnership in the 80's, and CRY
Patron Jeremy Bates. Having been asked to speak at this inaugural event I
was delighted to spot CRY Trustees, Sue Mappin and Tony Mason, supporting
this glamorous dinner on the eve of Wimbledon.
Lorraine Kelly TV programme
Lorraine Kelly's GMTV programme LK Today
offered us an outstanding raising awareness opportunity when they invited
Margaret and James Lancaster to talk about the tragic loss of their son,
Robert (left). It is only when people hear personal stories from families
that they truly appreciate the nature and impact of young sudden cardiac
death. The immense courage of our families in publicly speaking about their
tragedy is something that we very much appreciate.
July
CRY's Annual Raising Awareness Week (7–15
July)
Perhaps our most prestigious annual event is our
Parliamentary Reception in the House of Commons Terrace Marquee, held on
Wednesday 11 July during our Raising Awareness week.
By popular request David was again our celebrity
guest. He said "I think tonight really belongs to the young people here who
suffer from this condition and I think their bravery is an inspiration to
all us.''
Opera singer and new CRY Patron Kathryn Harries
surprised the guests with a medley of beautiful songs designed to raise
awareness of her Bridges Walk, the first leg of which had been completed
from Hampton Court to London the previous Sunday.
Unfortunately the reception clashed with what
was popularly referred to in ‘The House’ as "Blair's Bash" – Tony Blair's
farewell dinner for his MPs, which left us bereft of a large majority of the
Labour MPs who usually frequent our reception. However, we still had an
excellent turnout of in excess of 30 MPs, a number which would be the envy
of many charities.
Other guests attending included members of our
Surgery Supporters Club, CRY Patrons Jeremy Bates, Simon Halliday, Pat
Jennings, Gary Longewell and Andy Scott, representatives from CRY's Northern
Ireland Screening clinic, event sponsors Philips, medical professionals,
representatives from sporting organisations and our office and screening
staff.
Speakers included MPs and leading medical
experts. Andy Burnham MP (Chief Secretary to the Treasury): "I think the
onus is on all of you to put pressure on all of us to do even more and, (as)
you say, hopefully one day we will make a difference."
Professor Roger Boyle CBE (National Director for
Heart Disease): "There is still an awful lot to be done, but CRY has really
been filling many of the gaps that the NHS has not been able to do, which is
to sort out all those crucial issues, giving impartial advice, getting fast
track to people who do have the expertise to the families that suddenly find
themselves in these impossible circumstances."
Ann Keen MP (on her first day as Parliamentary
Under Secretary for Health Services at the Department of Health): "I know
there is an awful lot of discussion at the moment around screening and how
best families can feel more secure. The tragedy that would happen to a
family when you would lose a child, a brother, a sister, a cousin, a friend
– all of those family names we can mention, you can't really understand at
all unless it has happened to you. What I would want for all of you is what
I would want for myself."
Vince Cable MP: "Premature death, death amongst
the young is particularly shocking and here is…something that is eminently
avoidable in a prevention screening. If the system works, a lot of these
deaths could be avoided."
Dr Sanjay Sharma: "Apart from diagnostics and
these physiological goals, CRY has also been pivotal in identifying the
prevalence of things like Hypertrophic Cardiomyopathy. Nobody in the world
has actually ever done that in sportsmen. CRY has just identified that
conditions like Long QT are more common than Hypertrophic Cardiomyopathy.
Again, nobody has ever done that before."
www.c-r-y.org.uk/CRY_parliamentary_reception_2007.htm
CRY Patron Kathryn Harries in Heart of London
Bridges Walk, Part One (7 July)
The first leg of this walk began with the CRY
party leaving Hampton Court Bridge after a 7am breakfast for the 32 mile
trek, finally arriving at Tower Bridge at 8.30pm. Kathryn accumulated
friends and family en route, stopping briefly for radio interviews with LBC
and Southern Counties radio and a much needed foot massage from friend Jill
Philips.
Heart of London Bridges Walk, Part Two (15
July)
This took place with 400 supporters arriving
from all over the UK who between them raised a stupendous £68,000! The
superb weather contributed to an emotional day, with 82% walking in memory
of a young friend, partner, sibling or child – deeply loved and tragically
deprived of the luxury of having a life to live.
Save Our Athletes (26 July)
The second part of our Philips Heartcare
Partnership launched the Save Our Athletes Research Project and found me on
26 July circuiting London's TV studios with three times cycling Olympic
medal holder Rob Hayles MBE. Rob's long day promoting this initiative
culminated with an interview on Newsnight. Running in tandem with Rob's
interviews, Olympic medallists Mark Foster and Karen Pickering attended a
promotional event at the Waterfront Leisure Centre in London where they were
amongst the first elite UK athletes to be screened.
August
Nova article (21 August)
On 21 August Michelle Wilson was invited to
write an article for Nova International on participating for CRY in the BUPA
Great North Run in memory of her brother Kevin. Nova put the article in
their online magazine. Michelle said "I know Kevin will be very proud of me
taking on such a challenge just ten days after the first anniversary of his
death and for raising money for CRY, so that they can continue their work
and try to prevent Sudden Arrhythmic Deaths from occurring as often as they
do."
Department of Health's endorsement of CRY's
Co-ordinated Fast Track Services for Affected Families This month we
welcomed a ringing endorsement from Professor Roger Boyle CBE, National
Director of Heart Disease when he congratulated CRY for its "ongoing role in
the development of these services." These include:
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Fast track coroner/pathology service managed
by histopathologist Dr Mary Sheppard and funding coroners' young sudden
cardiac death referrals to the CRY Centre for Cardiac Pathology at the
National Heart and Lung Institute Imperial College London, Royal
Brompton Hospital
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Fast track screening service managed by
consultant cardiologist Dr Sanjay Sharma at the CRY Inherited Cardio-
vascular Disease Clinic, King's College Hospital, London
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Fast track athletes screening service
managed by sports scientist Professor Greg Whyte at the CRY Centre for
Sports Cardiology based at the Olympic Medical Institute
-
CRY Surgery Supporters Club providing
counselling, support and help for those diagnosed and holding bi-annual
meetings with a counsellor and consultant cardiologist
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Bereavement Support through a network of
trained individuals whose family suffered a young sudden cardiac death
and regional Bereavement Support Days in the North, Midlands, Southwest
and Southeast.
September
Northern Ireland deaths
Four young sudden deaths in Northern Ireland
received considerable media coverage and lead to such an overwhelming demand
for appointments at CRY's Northern Ireland Screening Clinic that it almost
brought our office to a standstill.
Our screening team responded swiftly and pulled
out all the stops, with Screening Manager Anthony Shaw forsaking evenings
and weekends to meet this unprecedented situation.
Silent at Heart (4 September)
I was privileged to be able to go round this
stunning exhibition on my own prior to the launch. I found the artwork of
these sixth formers deeply moving and extraordinarily perceptive.
Congratulations to all involved and a warm appreciation of the enormous
amount of work, innovative interpretation and commitment to the young people
who participated and their tutors and of course to Mauricio Vincenzi who
translated his story to the students in a way that made it so real, having
lost his father at the age of 32.
Dr Sanjay Sharma, who acted as Clinical Lead for
the project, said "Nobody has actually touched the hearts of parents and
school teachers like this project."
Showcasing a range of pioneering works,
reflecting the heartbreak felt by many young patients and their families, is
an innovative way to raise awareness of sudden cardiac death.
www.c-r-y.org.uk/silent_heart_press_release.htm
Southwest Regional Bereavement Support Day (8
September)
Ten people attended this event which was held at
the Bristol Golf and Country Club, a wonderfully tranquil location
over-looking panoramic views of the Severn Bridge and River. The objective
of taking bereavement support to the regions is to make it accessible to all
and having lower numbers in no way diminished its impact or our resolve to
keep offering this service into the community.
www.c-r-y.org.uk/bereavement_support_day.htm
October
Austin Mitchell joins APPG (10 October)
Austin Mitchell MP became the 105th member of
our All Party Parliamentary Group (APPG).
CRY International Conferences (12 – 13
October)
Our Annual International Conferences on Sports
Cardiology and The Diagnosis and Management of Inherited Cardiovascular
Disease were held in London. These academic conferences were awarded the
maximum of 6 Continuing Professional Development (CPD) points each by the
British Cardiac Society. 210 delegates representing all aspects of cardiac
medicine attended from all over the UK including consultant cardiologists,
doctors, research fellows, nurses and paramedics. Only doctors were charged,
with all other applicants given free places and heard international speakers
recruited from Italy, USA and South Africa as well as leading UK experts in
their field.
Feedback from conference delegates has been
extremely positive, with compliments on the content of the lectures, the
quality of the speakers and the overall organisation of the two days. Our
report on the event appears on page 12. The conferences will be held again
in October 2008.
www.c-r-y.org.uk/cry_international_conference.htm
Classical concert (13 October)
A classical concert held in memory of Cecilia
Barriga was highlighted in the Daily Mail. Professional musicians joined
Cecilia's friends and family in performing at this charity concert to raise
funds and awareness.
CRY Schools initiative
A unique initiative was launched in County
Durham in memory of Kasia Ber when every secondary school governor received
a CRY leaflet during the autumn term's Governing Body meeting and each
secondary school received two copies of the CRY DVD. This was supported by
an item in the Clerk's Report to Governors including contact details for
CRY.
Southeast Regional Bereavement Support Day
(27 October)
This event was held at Wimbledon Park Golf Club,
a superb location overlooking a lake. With delegates able to be divided into
5 groups, this again proved to be the most well attended of all our
bereavement events. We are most grateful to Alastair and Stephanie Paterson
for securing the excellent venue and funding the day in memory of their son
James.
Heart Rhythm Congress (30 October)
I was invited by Consultant Cardiologist
Campbell Cowan to chair a session on ‘Caring for the Families of SCD
Victims’ at the Heart Rhythm Congress in Birmingham. Speakers included
pathologist Dr Mary Sheppard, consultant cardiologist Dr Elijah Behr,
Coroner Dr Roy Palmer, Mike Yates (Administrator for Chapter 8) and Colin
Simpson who spoke about the impact of the recent death of his 20 year-old
daughter Sarah and the critical importance of CRY's fast track cardiac
pathology service.
Media coverage
On 8 October the Channel 5 discussion show
The Wright Stuff explored the issue of being young and widowed and asked
what it was like to lose a partner when you're still in your 20s or 30s. It
also addressed the difference between terminal illness and sudden death. The
show featured two women whose husbands had died of cancer and CRY
Representative for Kent, James Brown, who appeared on the show to talk about
the devastating loss of his wife Katrina who collapsed after the British10
kilometre race in July 2006.
Also on 8 October Radio Five introduced the
issue of young sudden cardiac death in a programme which featured footballer
(and CRY Patron) Andy Scott with Dr Sanjay Sharma, who diagnosed him with
hypertrophic cardiomyopathy after he felt unwell during a match.
On Sunday 14 October I was invited, with
Professor Bill McKenna and Dr Richard Shilling, to speak on the BBC Radio’s
Five Live Report from 11am to 1pm with presenter Rachel Burden. The
programme is Radio Five's flagship investigation programme and this was the
follow-up to the 8 October edition. Five Live reporter Sarah Mills explored
why screening that could save many lives is not routinely available on the
NHS.
Freelance journalist Barbara Lentin informed us
that she was runner up in the Guild of Health Writers Consumer Writing
Awards on 11 October for the feature she wrote for The Times on Nina Jelen
and arrhythmias. She felt especially proud that it was this piece of three
submitted for the award, as the subject had touched her very deeply during
the research and writing.
November
National Gallery Breakfast
GlaxoSmithKline offered us an innovative
opportunity to invite corporate guests for breakfast and a private viewing
of ‘Renaissance Siena: Art for a City’ exhibition at the National Gallery.
Guests attending this stunning exhibition on 20 November included CRY
Patrons Kathryn Harries, Mark Cox and Roger Taylor, and members of our Board
of Trustees led by Professor Greg Whyte as well as some CRY families.
www.c-r-y.org.uk/cry_breakast_event.htm
MP mentions CRY (25 November)
Kevan Jones MP, Chair of the Cardiac Risk in the
Young All Party Parliamentary Group spoke about CRY on SKY news in response
to the Queen’s speech.
December
Children's Charity Awards (28 December)
Daily Mail readers and Royal Bank of Scotland (RBS)
staff voted in their thousands for their favourite children's charities from
which 90 were selected to receive the RBS ‘Children's Charity Awards' of
£10,000. CRY was one of the lucky charities. Local MP Chris Grayling
presented the cheque to us at the CRY office.
Cursitor Street Christmas Lunch(7 December)
Andy Jonesco was one of the many friends of John
and Barbara Darby who were appalled to hear of the sudden death of their son
Ryan. As Chair he chose CRY to be the main beneficiary from the traditional
Cursitor Street Christmas Lunch. 590 people attended this extraordinary, mad
event marking the run up to Christmas for the media side of the entire
advertising industry. We started celebrations at 12.30 and were finally
evicted at 5.30! A very generous private benefactor doubled the total amount
raised by guests in memory of Ryan Darby to £9,600.
Surgery Supporters Club meeting (9 December)
Dr Sanjay Sharma was again the star guest for
our Surgery Supporters Club meeting, held locally at The Haywain in Epsom.
These events are for young people diagnosed with life-threatening conditions
where they get an opportunity to meet each other, talk informally to an
expert consultant cardiologist, and also have a group counselling session
where they can discuss any social issues that have proved challenging.
www.c-r-y.org.uk/ssgroup.htm
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