QUARTERLY UPDATE News, Views & Do’s -
♥ Meet our Representatives ♥ Newsletter ♥ Kids for CRY ♥♥♥♥♥♥♥ Julie’s Interview ♥ Jokes Corner ♥ Puzzles ♥ Jan`s Report ♥ Steve`s Report ♥ Marathon tales ♥ Our Fundraisers ♥ Raising Awareness ♥ Bulletin Board
CARDIAC RISK in the YOUNG Issue No. 29 Summer 2001 CRY SUBSCRIPTION AND / OR DONATION FORM Name............................................................................................... Address............................................................................................ Please use .....................................................................Post Code................... the enclosed FREE Telephone ........................................................ Date...................... POST envelope
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MEET OUR REPRESENTATIVES IN CORNWALL - IT`S ALISON DOYLE
I have been involved with CRY for about 3 years, since my husband Colin died suddenly. We like many others were just a normal family, we had recently moved to Cornwall for a better way of life. At the time of Colin`s death we had two children, Joshua three years and Joshua, Colin, Alison and Georgia Doyle Georgia three m o n t h s . Everything was perfect, our dream had come true, then the time bomb that must have been ticking away in Colin, decided to go off and our lives were shattered. No cause of death was found for Colin and his death was recorded as Sudden Adult Death Syndrome, something I had never heard of and certainly couldn`t understand. For the last three years I have helped, with some very good friends, to organise two charity events a year, and have also worked with the media to help raise awareness and funds for CRY. Without the help and support of CRY I don`t know where I would be now, and I would like to help anyone in a similar position. I am also committed to helping CRY stop this hidden killer.
NEWSLETTER Summer 2001 In this issue it is exhilarating to be able to finally announce the instigation of our CRY Centre of Sports Cardiology (CRY CSC) to be based at the British Olympic Medical Centre (BOMC) at Northwick Park Hospital. This will be given a full scale launch in the Autumn and is believed to be the first centre in the world specialising in sports cardiology.
As many of you are aware, for the last 3 years there has been a dedicated effort to find a suitable location for our Sports Cardiology Centre. A number of prestigious venues have been considered and an enormous amount of time consumed in moving this important project forward. A special thanks to our stalwart Trustees for their immense patience in helping to resolve so many crucial issues, to our Administrator Jan Smith for her dedicated efforts in driving this complicated initiative forward and not flinching in the face of the amount of work the project entailed, to the BOMC in sharing CRY's dream to establish a centre of excellence for cardiac evaluation of the athlete and to our Chairman Dr Greg Whyte who has extolled our campaign at every opportunity and ensured that those who could make a difference to developing our programme heard of our work. The CRY Centre of Sports Cardiology is the first of its kind and will be breaking new ground with the on-going development of our pro-active and re-active screening programme. CRY's goal is to protect young lives from the risk of sudden cardiac death. Most young people play sport at some time. We have modelled our screening programme on the one that has been in existence for many years in Italy - that all people of any age playing sport in a club or school have mandatory pre-participation cardiac evaluation on an annual basis. There is indisputable evidence of the life-saving impact of their programme. Our CRY Centre for Sports Cardiology is a massively significant step forward in focusing on this crucial, potentially life-saving issue. Our successful London Marathon entry has (to date!) netted over £90,000 which will help to core fund our expenses at the CRY CSC. We will also be extending our "ring-fenced funding" Shopping List to coincide with the extra medical equipment required and would like to take this opportunity of saying a special thank you to the Lewis Marsh Memorial Fund for kicking us off and committing to the donation of a new portable echocardiogram machine and the Craig Rampton Memorial Fund for our first ECG machine for the Centre. Since the 3rd June 2000, our Administrator Jan Smith's remarkable organisational skills has facilitated ECG Testing/mobile screening for a total of 724 young people of which 8 are now in the NHS system. Of the 221 people evaluated in our Family Mobile Screenings, 5 are now seeking treatment within the NHS for conditions including Marfans and undiagnosed Angina; of the 174 elite athletes evaluated, 2 have been diagnosed with conditions requiring further cardiac care - i.e 1 in 90 of those tested have required attention. Convincing statistics confirming the crucial contribution our screening programme is making to those young people at risk of potentially life-threatening cardiac abnormalities. Now that we have our first ethical approval for schools in the Western Isles “logged in” for late Spring 2002 we are going to pursue our next ethical approval programme in Essex that will be funded by the Andy Gard Memorial Fund. With data from these two ECG Testing events in which we will be aiming to screen a total of approximately 2,000 teenagers, we will have some comprehensive statistics on which to determine the viability of ECG Testing in schools. On June 21 Dr Julian Lewis succeeded in getting an Adjournment Debate on cardiac risk in the young in Parliament (see transcript in Update). The responding Minister was Parliamentary Under Secretary of State, Yvette Cooper and for a period of ½ hour the issues
NEWSLETTER Summer 2001 around cardiac risk in the young were discussed on the floor of the House. Julian has been an active supporter of our campaign since he was contacted by his constituent Adrian Woodhead who held his 28 year old wife Sarah as she tragically died suddenly in his arms. It was excellent to have the support of the CRY team for this important debate for us which has certainly had an impact in the corridors of power. On July 8 BBC Radio Wales released their documentary on Sudden Adult Death Syndrome. This was the first in a new documentary series Eye on Wales on which we had been working since January, and gave a moving account of the impact of sudden cardiac death and the current problems we are dealing with, including an interview with Professor Bill McKenna who said he believed that the number of young sudden cardiac deaths are probably between 4 8 a week. Copies of this tape 1/2 hour are available from the CRY office (see Bulletin Board). I have been asked to facilitate a workshop at a conference to be held by the Children’s Heart Federation in London following the Bristol and Brompton inquiries. The Department of Health is reviewing services for heart children, so they can be improved in the future. They need a wide representation of parents whose child/young person has been in cardiac care to represent views on all aspects of the service to produce a report for the Department of Health. The booking date has now expired but they would very much appreciate written information (no phone calls please!) from you by fax, letter or e mail. So if your child/young person has had treatment for a cardiac abnormality this is YOUR opportunity to influence change. Information and contact details are enclosed. This Update marks the last for our Office Manager and Brochure Sub-Editor Tony Hill who is leaving CRY after being the backbone of our office for 5 years. Losing both Tony and his mother Rose within a period of 6 months is hard. Between them they helped me negotiate so many difficult - often blind - corners. Their loyality, reliability, pride and professionalism set standards of commitment that will echo in these rooms as long as we are here. It is immensely reassurring that the blow will be softened by knowing that he will still be involved in some of our screening events, for consultation, and doing our CRY Counselling Course. He is keeping his, (and our!) options open that he may reconsider returning to CRY again, sometime in the future. Tony's background in printing has allowed CRY the luxury of being able to develop our own in-house publications service and the development of a Brochure of which CRY can be enormously proud. Tony's talent, humility, work ethic and humour have made a crucial contribution to CRY's progress - we will truly miss him. Finally I would like, again, to nominate a special thank you to our extraordinary fund raiser Kenny Bowen. Never can there have been a more dedicated disciple than this intrepid man who over the last 3 years has written over 1000 letters, (BY HAND!) and raised the phenomenal total of £205,025 for CRY core funding initiatives. It was through Kenny's endeavours that we were able to fund CRY's move from our own home that we were working from to our new offices, and he will always be a part of CRY folk lore. People often ask how on earth CRY, as an entirely self-funding charity which has never received government or major grant funding, has made such incredible progress in only 6 years. That is simple to answer. Through all of you.
JULIE`S INTERVIEW WITH
MAT WILSON CRY`s Research Fellow Julie
What do you do for CRY?
Mat
I am a Research Assistant funded by CRY. Currently, I am study ing an MPHIL soon to be upgrading to a Phd. I am looking at the structural and functional cardiac differences between elite GB sporting teams. I am also compiling a demographic data base into all concernable data regarding exercise related cardiac death.
Julie
Where did you first find out about CRY?
Mat
Dr. Greg Whyte is my tutor for my MPHIL as well as my coach. My step-mother is a cardiologist in the US, so I have always been interested in physiology, but more specifically sports cardi ology. Recently, a good friend of mine was diagnosed with dilated cardiomyopathy, so It has become an important issue to my family and friends.
Julie
What is your sporting background?
Mat
I want to see CRY gain status as a national charity that is recognized without having to promote itself. I truly believe that this can become possible.
I played rugby since I was 10. I played for Hereford, The North and West Midlands, then the full Midlands team, but then missed out on the final England selection due to two knee operations. So no more rugby for me!!!!!!!!!!! As I was going to join the Marines I needed a tough sport so I took up Triathlon. Dr. Greg Whyte is my coach. So far, I have been the Welsh junior captain, National and Welsh Champion on Middle Distance. Next week I am off to Denmark to compete for GB in the World Long Course Ironman Championships. It is a 2.4 mile swim, 12 mile bike ride and 26.2 mile run. What fun..................
Julie
How many marathons have you run?
Mat
A total of 4, but 2 of those were in a 50 mile off road race in Wales.
Julie
What is your fastest time
Mat
I can run sub-3 hour. I was in great shape for London, and was pleased to run 3hrs 16mins in costume.
Julie
Did it make much difference to you wearing the CRY Heart costume
Mat
To tell the truth, I never wore the costume before the marathon. I thought that if I wore it and didn't like it, I would be in deep trouble! So race morning came, and I thought I better put it on. It was great. I never had any problems, except once where the lads in front ripped off their bag bin liners and then threw them on the road. Luck would have it that I got my feet tangled in one of these bags, and so I went head over heels! Since my arms were tucked inside, I looked like a beached whale, stuck on the floor. Thanks to a clown and a fairy (2 other runners) I was helped up and continued on my adventure.
Julie
Will you do the Marathon again for CRY?
Mat
My step-mother is a cardiologist in the US, so I have always been interested in physiology, but more specifically sports cardiology. Recently, a good friend of mine was diagnosed with dilated cardiomypathy, so It has become an important issue to my family and friends.
Yes, I have already entered next year’s race. I have raced all over the world, but the feeling of achievement and the crowd was the best ever at London. I had Mat on my costume, and I don't think I have ever had so much encouragement. At one stage my ears were ringing with people shouting Mat, so I legged it onto the other side of the road to escape. Boy was I wrong! The best bit was being mentioned on TV by Steve Cram as the first proper costume runner over the line. Julie
What do you hope for CRY in the future?
Mat
To gain status as a national charity that is recognized without having to promote itself. I truly believe that this can become possible. CRY has a great team. The drive is something I have never seen before. I have learnt so much working with CRY personnel in the short time I have been linked with them.
Theme - The London Marathon
Photo-Call CRY EYE VIEW! Who?.................... What?.................. Where?...............
THE GREAT NORTH RUN ADVENTURE IN MEMORY OF DAVID STAFF. Saturday 21 st. October - the eve of the Great North Run 2000. I was sitting in a B & B somewhere to the west of Durham City, and feeling extraordinarily nervous. I can honestly say that the three leaves of lettuce and a single cherry tomato that I had consumed earlier weren't going to help me get through thirteen miles the following day. " Shouldn't you be eating pasta ?" asked my parents. Why did I feel so anxious? I had always enjoyed running for my own sake and although this was the first time I had taken part in an organised event, I had spent seven or eight months training for Gillian seen here i t . with Uncle Granville I was fairly confident about finishing the race and no one was really expecting me to beat Paula Radcliffe, even on a bad day. Were the other thirty nine thousand, nine hundred and ninety-nine runners feeling the same way? Having survived the night, I woke early to catch the train to Newcastle. Having been an undergraduate at Durham for four years, it was a journey I was used to, but as a shopping trip or a night out. Fortunately, by this time, my nerves had disappeared, I was more concerned with safety - pinning my race number to my T- shirt rather than my flesh and trying not to think about that my fingers and toes were so cold that I could no longer feel them. By this time I had made it to the start of the race and had managed to link up with Uncle Granville ( David's father and running partner extraordinaire ), I was really caught up in the atmosphere. The anticipation was almost palpable and the thirteen miles ahead of us seemed irrelevant as everyone was in party mode. It felt entirely natural to be sharing a motorway with forty thousand people on a Sunday morning in Newcastle whilst mingling with a group of Teletubbies chatting to a Giraffe. As the race began, the party continued with much shouting, shuffling and excitement - I missed Jonathan Edwards but ran past Jimmy Saville. Amazing ! The real live Jim'll Fix It ! (God to my generation despite his dubious taste in jewellery). Crossing the Tyne Bridge on a clear, sunny morning with thousands of other people was fantastic and an experience beyond compare. In fact, my good mood continued right up until I had crossed the bridge and faced the first hill of the morning. So this was what the training was for then………. Miles 3 - 10 passed in a reasonably pleasant way, and once I had settled into some sort of steady pace, I actually started to notice more of what was going on around me. There were runners making money for babies, older people, younger people, people-in-between and I have not even started to
mention the variety of human organs that were represented‌‌. Apparently, every postcode in the country had a representative too. " What an incredible event." Mile eleven was, shall we say, less enjoyable and even forgettable. It was a hill, not a short hill, but a long, drawn out hill. As I paused for my sixth bottle of water I started to doubt that the end of the race would ever happen. This feeling became stronger as I looked ahead to try and spot the fluorescent yellow twelve mile marker that would mark the beginning of the end. I became increasingly convinced that someone had been moving the mile markers as the race had gone on, I firmly believed that Blackpool Tower would appear somewhere on the horizon. Fortunately, it didn't, and with a great deal of encouragement from my running partner, I began the last mile. " Come on pet, only six hundred to go someone shouted !!! Six hundred !!! Six hundred what ??? Six hundred ice cream vans, six hundred hot dog stands, six hundred people, actually it was six hundred metres. Then four hundred, then two hundred, and with twenty five metres to go, I managed a smile and sprinted over the line in two hours and sixteen minutes. Jubilation !!! I had always been told that running is as much about psychology as it is stamina and fitness. In my case, that was certainly true, there was a lot more to MY run than just getting from Newcastle to South Shields in the quickest time possible. A few years ago, I would not have believed myself capable of such an undertaking - me ? A half marathon ?? Never !!! No way !!! Impossible !!! However, a few years ago I would not have conceived losing a dearly loved cousin to an undiagnosed heart condition about which I knew nothing. David died at Christmas in 1994, just weeks after his seventeenth birthday due to Hyperthrophic Obstructive Cardiomyopathy. The emotions that derive from such an event need not be discussed here, suffice to say that none of us quite understood what had hit us. The death of any young person leaves in its wake many questions and the need for justification impossible. It is then that attention has to be turned to life and the living. With that in mind, I chose to take part in the Great North Run and to raise money for C.R.Y. It was a privilege to represent C.R.Y., an honour to represent my family and I hope, a suitable tribute to David. Gillian Haddow.
£1517.41 HAS BEEN RAISED IN MEMORY OF LAURA MOSS £55.00 was raised by Kate (Laura`s sister) and her friend Grace using their charm and enthusiasm to get people to buy raffle tickets for a Teddy Bear. All of Laura`s class at The Wey Valley School arranged a mad hair day at school to raise money for CRY. Teachers and children were encouraged to come to school with the most outrageous hair colour styles and accessories and pay 50p or a donation for doing so. Along with individual donations after Laura's death and money raised on the day £900 was raised. Kate our daughter dressed up in Victorian dress with her friend Claudia on Show Night and organised a raffle for a teddy bear. They raised £50.00 using their charm and great selling power to the Gran's and Granddads! Danielle Watts a very good friend of Laura's had wanted to do something for C RY and discussed with the Team Leader Tom, of her local youth club Steps in Chickerell Road, Weymouth, how she could find a novel way to gain sponsorship. In association with Asda Supermarket Weymouth and with the support of Tom, she sat in a Bath of Gravy for 4 hours inside the shop and at the end of the checkouts. She raised a wonderful sum of £512.41p. She kept smiling even though she was sat on fat congealing at the bottom of the bath. The Staffat Asda were tremendously supportive and continued to top up with hot water so that she did not suffer hypothermia. Gloria Moss
Seen here Danielle with her supporters
MIKE SCOTT MEMORIAL F U N D Lady Lumley`s (Mike`s old school) have once again organised a non uniform day This event proved very popular with the pupils and raised a brilliant ÂŁ128.00 Ryedale School last year decided that instead of sending cards to each other they would put a greeting onto a Christmas Tree in the staff room and donate funds to CRY in Mike's memory. Through this idea they raised a fantastic ÂŁ190.00.
WORDSEARCH
can you find these words?
JAN SMITH CRY`S ADMINISTRATOR REPORTS FROM CARDIOLOGICAL SCIENCES ST GEORGE`S HOSPITAL MEDICAL SCHOOL Hello Again ! I have been politely reminded that my report is due. Where to start? As you know, CRY was invited to attend at Millfield School, Somerset back in the Spring. At this point, some of you might be thinking, "hang on a minute - what's this about schools?" Well, Millfield is a private establishment and CRY doesn't need Ethical Approval from the local Health Authority in order to visit the school. Anyway, back to Millfield; our team attended, 120 students were tested and of this group, a small number were invited to attend for further tests. Tests were carried out by Dr Sanjay Sharma, now working at Lewisham University Hospital, as the new Consultant Cardiologist. A very big thank you to Sanjay, who read ECG reports for the students and personally undertook the further tests required for the students. Our thanks go to Dr Sharp, Medical Officer for Millfield, who made initial enquiries as to how we could visit the school. This project was a very valuable pilot study which has helped us to ascertain how long we need in order to actually test 780 young people in the Western Isles. It looks as though we should be able to complete the work in about 11-12 days in all (taking into account island hopping and choppy seas!) and we are aiming to be with Alex and Fraser Fotheringham next spring. Staying with ECG Testing, Sally Reid will be holding her fourth Testing session on 1st and 2nd September in Sandhurst, Berkshire. If you know of someone who is keen to be tested, would you please ask them to contact me in the first instance and I will then check if there are places available. We have found it's better for a member of staff to speak with interested people from outside the locality of the event, as potentially, it could put the Fundraiser in a difficult situation. Sally aims to make this a big event, with the intention that 100 plus clients are reviewed. Well done Sally - and the best of luck for a successful Testing session. Sports Screenings with the British Olympic Medical Centre (Sports Cardiology) Things have really moved forward in this area. This is an incredibly exciting time for CRY - we are developing our service to offer screening to both elite and ordinary athletes. This is preventative medicine at it's best and we hope it will be encouraged throughout the sporting community. The service will be launched with the full support and backing of the British Olympic Medical Centre in the late summer. Our Sports Cardiology Centre will have a base with the British Olympic Medical Centre at Northwick Park Hospital, and we will be looking to be operational from that site in the Autumn. This opportunity takes CRY into a national arena, and our aim will be to extend our supporting hospitals by having another channel through which we can offer families testing. Extending the service between sites will strengthen and broaden our remit. We hope this centre will also offer families a unique opportunity to fundraise for a specialist centre, which will be internationally recognised as a seat of excellence in sports cardiology. Progress will be reported on a regular basis. We have already undertaken two events with the BOMC. Firstly, the CRY team visited Rugby Football League at Red Hall, Leeds on Saturday 23rd June to provide a full screening for fifty-three students in the 15 age group. This was in response to the tragic death of a young rugby player earlier in the year. Our team for this event was made up of Monica Harries, Research Nurse undertaking ECG's, Annette Jones (one of our long term supporters) and Maureen Arnold on ECHO. Dr Sam Firoozi provided Cardiological support and CRY`s Screening Manager Steve Cox supported by David Gregory kept the show on the road. Our team got through all 53 students in one day, with the use of a second ECHO machine. Everyone really pulled together to get through this number of clients - indeed, Monica reported that she got home from Leeds and promptly went out for dinner‌stamina to be envied! Our second sporting event was with the Paralympic Swimming Team at Manchester on Sunday, 22nd July. Thanks go to Sam Firoozi, Julia De Courcey, John Pither and Helen Driver for getting up with the sun to travel to Manchester. Steve Cox was assisted over the weekend by Mat Wilson, CRY's Research Fellow -
Mat ran the Marathon for us in a CRY Heart and was the first runner to complete the Marathon in a costume and in under 3.5 hours! Our Chairman, Dr Greg Whyte joined the swimmers on Saturday evening to talk through the issues of screening and by all accounts, CRY had a successful day. Sam has now proved it's possible to get from the centre of Manchester, to the Airport, through the security checks and be seated ready for the home flight in about 23 minutes flat. That's what happens when you work up until the absolute very last minute. We are now waiting on a date to screen the British Olympic Rowing Team. Lawn Tennis Association - Mobile Cardiac Screenings We have been invited to attend again at Sutton in September 2001 to screen 57 young players and we will be based at Sutton over a two day period - Tuesday 11th and Wednesday 12th. We are now looking to find a date towards the end of September to visit Centres at Leeds and Bolton, with the aim being of seeing all the LTA centres by the end of October 2001. Family Mobile Cardiac Screening Weekends The CRY team visited Darwen in Lancashire over 29th June - 1st July. The team for this event consisted of David Oxborough and his partner Adelle on ECHO, Dr Firoozi for our cardiologist, ECG technicians Julie Kay and Gillian Middlehurst, and Tony Hill, Family Screening Manager and myself bringing up the rear. What a fantastic venue, and what a wonderful team of supporters. Everyone arrived on time, and we only had one hiccup when we had to move one client in front of another‌.the time and effort put in by Granville and Irene and their supporters really helped to smooth the path for a calm event. We were looked after by Alex, the Caretaker of the Darwen Access Point, the venue for the event. What a guy! He helped us to set up (as did David and Adelle) and he was present during the whole weekend right through to the close of things on Sunday afternoon. Sincere thanks go to all those people who helped pull this event together! We have our next dates for a family Mobile Cardiac Screening which is 27-28th October with the Blow family in West Lancashire. We are hoping to fit in one last family screening for 2001, in November - we are just waiting on final confirmation that we have ECHO support and we're organised. This will be the last family screening event until February 2001. A further three CRY families have now expressed an interest in holding screenings in 2002. We are looking to hold a maximum of six family screenings a year so if you are thinking of holding an event, please contact me so that we can discuss dates. CRY ECG machines Since our last update we have placed a further two ECG machines - which brings our donated total up to 28 machines. Shirley Wort has donated a machine in memory of her son Julian to the Frome Medical Practice and Joy Powell has placed a machine at the Berwyn House Surgery, Worcester in memory of Craig Rampton. The Neil Wickers/David Staff ECG machine has also now found a home at the Medical Centre in Darwen, for the benefit of all patients. The impact these machines have on a community is absolutely wonderful - ECG equipment doesn't often get priority when resources are so stretched by absolutely essential everyday items. The fact that CRY families can fill the gap by offering this equipment helps the surgery and community in a practical and highly effective way. If you are thinking about donating an ECG machine into a surgery environment, please give me a call in the first instance. Secondly, if there is anyone else out there who is searching for a home for an ECG machine, please, please, please let me know. I can help you find a home for the machine within your community; it's often easier to have someone in the office take this up on your behalf. There may be one or two of you who purchased equipment a number of years ago, and you're not sure what to do next if this is the case, give me a shout. We now have a policy where we know exactly where equipment will be placed before the purchase is made, and again, if you require help with this, don't hesitate to ask. Other news‌.. Dr Elijah Behr has very kindly supplied written information on Ion Channelopathies for the CRY Brochure. Dr Behr has also stated that any material supplied to CRY will be the property of CRY and should not be used by any other organisation. If you wish to use this material, please contact our Office Manager Steve Cox in the first instance. CRY will be producing an updated Shopping List of essentials for the new Sports Cardiology Centre. If you are interested in being involved with this unique opportunity, please ask for a copy! In the meantime, if you would like any additional information on screening, testing, or placing equipment, please don't hesitate to contact me. Best wishes. Jan.
REPORT FROM STEVE COX London Marathon To date in this year’s London Marathon we have raised over net £80,000, of which at least a further £10,000 has been Gift Aided, with so many of our runners far exceeding their £1,000 goal. The event has been a huge success and already we are receiving reservations for next year both as Golden Bond and Heart Costume Runners. There are now only a small number of runners who are short of their pledges, struggling to jog memories of generous donations made late at night down at their local. Good luck, for some the running is the easier part! We hope to be able to give a more accurate final figure in the next issue. First BOMC Screening - National Rugby League Junior Team On the 24th June we held our first CRY/ BOMC mobile screening in Leeds for the Junior National Rugby League Team. During the event we used the New Acuson Cypres ECHO, (not much bigger than an ECG machine), which had an excellent appraisal by our technicians and cardiologist. David a was great support in setting up and helping manage the event. Annette and Maureen shared the ECHO's and initially intimidating task when confronting 53 athletes in one day. A technician expects to manage 8 patients a day in a hospital! While Monica, after her serious speed training at Millfield, took the 53 ECG's in her stride. As always it was terrific to be back working with Sam. BOMC Paralympic Screening On Sunday July 22nd I had the task of managing our screening of the Paralympic Swimming Team in Manchester, many of whom came home from Sydney with the highest accolades. This (having done numerous pilot studies with Greg) was Mat Wilson's first CRY/BOMC screening and with so much experience in this area, he was a huge help in setting up and ensuring the smooth running of the event. Greg drove up from Devon, the night before, to check all was going to plan and give a talk to the swimmers, as well as rising early the next morning to take their blood and saliva. By the time ECG's and ECHO's were taken most of the athletes were delighted that the needles were behind them, and all they needed to do was relax. Once again we used the Acuson Cypres ECHO. Siemmens (owners of Acuson) sent a photographer for their internal magazine, creating a great raising awareness opportunity for CRY. Although John was reluctant to comply with the photographer's request to point the ECHO probe in a way that missed the heart completely, (undermining his professional integrity, for the benefit of a 'more interesting!' picture), eventually all parties were happy and we now eagerly await the magazine to see the final result. Website Search Engines: We have started to submit our web address (URL) on a weekly basis to a number of major search engines, as well as various 'link' sites through a generous donation of a years access by www.exploit.com/wizard. Although this can take up to eight weeks in some cases and there are no guarantees, we hope that CRY will soon be registering highly on all the major search engines with all the most popular search phrases. If you have found CRY has not registered highly with a specific search phrase such as 'SADS' or are not with a specific search engine, please email me with the phrase and search engine used and I will update/or include that search engine in those we submit to. Fundraising: The website is now becoming the first point of contact for many enquiries. Event Write Ups is an area dedicated to CRY fundraisers. If you would like to write up your experience of an event for the website please email me, or send a disk, with a word doc and a picture (originals preferable).
RUNNING AROUND LONDON IN A CRY HEART During October 2000 whilst working at a Bournemouth fire station, Terry Brokenshire a lad on my shift mentioned in casual conversation that he was going to run the London Marathon dressed as a giant heart ! Terry explained how he had become involved with CRY after experiencing the tragic consequences of heart failure in the young whilst working as a lifeguard in Somerset. Consequently myself, Neil Ditch and Terry, all Dorset Firemen, pledged to run for CRY. Training was well underway by the New Year as we pounded the streets in preparation for the big day in April, whilst badgering everyone we knew for sponsorship. The costumes were dispatched from CRY. We would certainly stand out on the day! Travelling up to London the day before the Marathon gave us the opportunity to meet the CRY team of Steve and Tony and other CRY runners. Adrenaline levels were rising and sleep was hard to come by that night. Sunday dawned and in no Mark, Neil & Terry seen here after their terrific run time we found ourselves on the starting line.The gun was fired and 30,000 runners were on their way. Myself, Neil, Terry, Steve and Gordon all running in heart costumes decided to run together and crossed the actual start line nine minutes after the gun had been fired. As we did so a microphone was thrust into my face and we were interviewed by BBC TV. What a coup for CRY! Gordons mobile phone rang and it was confirmed that the interview had gone out live to the whole nation. I just hoped that I had said the right things. The crowds were already large and constantly shouted encouragement, our names were pinned to our costumes so rang in our ears for the whole 26 miles. The early miles passed, the pace was steady and we were swept along by the occasion. Many spectators shouted that they had seen us interviewed and everyone seemed to know we were running for CRY. The Cutty Sark came and went and we crossed the Thames at 12 miles. The weather was perfect and slightly to our surprise we found that our heart costumes really were easy to run in, which also meant that we could not use them as an excuse if we did not finish! The five of us ran together until half way at which time we realised that we would all have to run at our own pace if we were all going to complete the distance. The crowds encouragement pushed me on to the Isle of Dogs and I passed the 18 mile mark. Suddenly the pain began and between 19 and 22 miles each mile seemed longer, my legs ached and my energy was draining rapidly.Those 3 miles seemed like an eternity but my costume was repaying me with support. The crowd seemed to pick me out baying encouragement. They would not let me stop even if I had wanted to. The cobbles came after passing Tower Bridge. More pain! I arrived at the Embankment. Two miles left. The crowds swelled again and my energy returned.The Mall was in sight and I crossed the line in 4 hours 38 minutes. I finally stopped running. An emotional moment! I soon met up with the other CRY runners. We eagerly swapped stories and lapped up the atmosphere. The journey home was a long one. Our legs stiffened up and we all had trouble getting in and out of the car. If I had been asked at 20 miles if I would run again I would have said "never" but on the journey home the seed was beginning to grow again! The time had come to collect the sponsorship money. People were very generous and the task was easier than expected. By the end of May I had handed my cheque to CRY. It is now July and looking back the whole occasion was a fantastic experience which was certainly enhanced by running for such a worthwhile and supportive charity as CRY. Roll on next year! Regards Mark Orchard
A FANTASTIC £1432.00 HAS BEEN RAISED IN MEMORY OF WILLIAM TYLEY “Pull” a competitor awaits his Clay
Mr & Mrs Peter Culley have kindly donated the proceeds from their Golden Wedding Aniversary. Instead of presents they asked for donations to CRY. They raised a fantastic £480.00 for William`s Fund.
William pictured here shortly before his sudden death. He died in his sleep on 23rd February 1994 age 14.
Mr and Mrs Rodney Coward the owners of Wood Farm, Mere, Wiltshire organised and held a clay pigeon shoot on their farm. A fantastic £782 was raised. Seen here Mr & Mrs Coward & Mr David Marks (right) A further £170 was raised by the wonderful efforts of Daphne and her supporters. The Norton Ferris Farm collecting box (situated in Daphne & Richard`s kitchen) proves itself to be an effective ongoing fundraiser. Another idea included 'adoption donations for her polydactyl kittens!’ Many had 6/7 toes on some/all feet! The Millennium Night ‘CRY TAXI’ was invented by Daphne, she drove home drinkers from The Home Guard Club and The Red Lion Wilmington. She writes “I received a large donation from a stranger in 4.30am - 1.1.2000 The Red Lion after explaining about ‘CRY’ CRY TAXI and why we are involved. The Taxi was in Daphne being from 8pm to 2.30am, when I returned Tyley in her home and we sat drinking champagne until CRY Uniform 4.30am! - worth it!!!” (Polo & Special Thanks also to Gillingham Fish & Sweatshirt) Chip Shop, The Golden Bottle Trust Fund and Mr David Marks.
A WONDERFUL £2769.14 HAS BEEN RAISED IN MEMORY OF IAN BOWEN Terry Glasper, who lives next door to Chris (front right), nominated CRY to Uniquema who donated £400 to Ian’s Memorial Fund
Ian Bowen
At the initiative of Tony Duffy £175 was raised from a quiz night for Ian’s Memorial Fund. Neil and Judy with Kenny and Maralyn
In April of this year, Neil & Judy Sereinson generously donated a bike after winning it in a raffle. Kenny & Maralyn Bowen raised a huge £600 for Ian's Memorial Fund by raffling the bike once again. The person who won the bike, Mrs Betty Taylor, kindly gave it straight back to be re-raffled and therefore raised an even greater amount.
When cameras issued to Transco`s engineering staff were due to be replaced Manager Richard O’Neil decided to offer the old ones to staff for a donation to their chosen charity. CRY was nominated and the snappy sum of £590.00 was raised in memory of Ian. Seen below right Peter Race hands over the cheque to Steve Hanley.
Once again a Boxing day dip was held in memory of Ian. A Freezingly Fantastic £377.14 was raised by Chris Brouder, and The Middlesborough Teeside Lions Club.
Ann and Nick Coulson giving a cheque for £500 for Ian’s Memorial Fund. Ann and Nick, along with friends Yevonne Flintcroft, Stewie Jones, Ged Ryan, and Barbara Clarkson, from the Pig and Whistle, did the Lyke Wake Walk, a 42 miles hike across the North Yorkshire Moors.
Congratulations to Steven Davison for raising a super £127 by running the Great North Race in memory of Ian Bowen. Ann & Nick with Kenny & Maralyn
H`S DAY AT LITTLE HAY THE GOLF TOURNAMENT THE 4TH 'H' JENNINGS C.R.Y. MEMORIAL TROPHY - 8th OCTOBER 2000 After a week of torrential rain, the prospect of a cancellation for last year's event was becoming increasingly likely. A much more organised approach had enabled us to register 100 players, the largest number to date, so we were overjoyed when the rain stopped on the morning of the event and the Course Manager, Chris Gordon, allowed it to go ahead. The course was extremely wet and many players arrived at the refreshment table with muddy bottoms!!! This year the players were again made up of friends, family, staunch supporters who have played in previous tournaments and many golfers playing in the event for the first time. Those playing for the first time included lady contestants. Unfortunately one of the lady players Pat Mumford injured herself after slipping over and had to retire, but has said that she will return this year! Christine Osborne won the ladies award. The group of volunteers were invaluable as ever, and special thanks go to Carole Haylock for managing the money, and raising £500 sponsorship from her employer, Lloyds TSB, again this year. Angela Masters was the computer wizard who created a superb score sheet enabling all scores to be calculated on screen. The band of ladies who served coffee and biscuits at the ninth was a welcome sight to the weary golfers as ever. Atlas Copco supported the event again last year, with three teams playing, individual player sponsorship, and donation of a Ping putter for auction, raising £70. Hemel Trophies and Jewellers, who put in a team for the event, donated trophies for Nearest the Pin, won by Nick Holt of Atlas Copco, and Longest Drive, won by Simon Davies of Computacenter. Thanks also go to Computacenter; Royal Bank of Scotland; Maxell; and Sony, for donation of raffle prizes. The standard was incredibly high and Gary Peck won the trophy for the second time. There were three people who tied for the second position and places had to be decided over the back nine and six holes. The second position went to Paul Trundell and Stuart Shutes came third. Phil Hannah of Atlas Copco won the booby prize, for the second year running. The event raised £3,000. A superb achievement as this is double the amount normally raised on the day. The support shown by Little Hay Golf Complex has been huge and big thanks go to manager, Chris Gordon. The event was covered by the Gazette in Hemel Hempstead and the Watford Observer with photographs in both publications. This year’s event will take place on Sunday, 8th October 2001. We hope to increase our numbers again this year. Anyone interested in playing should contact Keeley Ashley on 01202 881234 or email me on keeleyashley@aol.com. The Atlas Copco Team featuring Phil Hannah (Booby Prize Winner 3rd from left)
The Ashley Team with Simon Davies (right) who won the longest drive
A WONDERFUL £3,000 HAS BEEN RAISED IN MEMORY OF HOWARD JENNINGS Just re-arranging the furniture
Kevin Masters Team with Pat Mumford who will be hoping for a dryer course this year
The Hemel Trophies & Jewellers Team with David Gordon (2nd right) who heard about the tournament from the CRY newsletter
Claire Tyler Waddington showing the fellas how to do it!
Carole & Ray Haylock Watch out for the speed ramps
Dad`s Team with Christine Osborne (left) winner of the ladies trophy (& Jazmine of course)
Stuart Shutes (2nd left) pictured with his team & “superscorer” Angela Masters (right)
Gary Peck who won the trophy for the 2nd time
Mum & Christine Osborne ladies trophy winner
A BRILLIANT £2620.00 HAS BEEN RAISED IN MEMORY OF COLIN DOYLE A further 3 events have been organised by Richard & Annmarie Haynes (close friends of Colin & Alison) and their fundraising team. This is what they have been up to:- Colin used to live in Langley, during this time he was a regular at his local for a number of years, and hence the idea of holding a fundraising night. A Charity Pool, Darts and Quiz Night was held at The Willow Tree Public House.
Colin Doyle
“Richard Haynes and Pat Shea, who still frequent the pub on a fairly regular basis, along with some of the other regulars that knew Colin, discussed the idea with Neil Young (Landlord) and his good Lady, Sara Dunsdon. They gave us their backing and the event was subsequently arranged.” “Neil, resident ‘DJ’ for the night, along with Sara, did a great job hosting the evening. Great thanks go to Neil for his ‘persuasive powers’ in getting people to bid generously while auctioning off various shirts, which he had donated. All in all from all the activities and donations during the evening, a fantastic total of £660.00 was raised”. Writes Richard. The next event a Charity 5-a-side Football Tournament and Evening Disco was held at Slough Post Office Sports & Social Club on Sat 8 July 2000. The event was a huge success, enjoyed by many, and raised a further £1450.00 in Colin's memory. Richard arranged for the Slough Observer to attend to help raise awareness of CRY.
For the third year running friends and family hosted The Colin Doyle Memorial Tournament at the Royal Standard, Gwinear in Cornwall. This annual event was memorable and enjoyed by all those who attended and a brilliant £510.00 was raised in memory of Colin.
A FANTASTIC £1571.12 HAS BEEN RAISED IN MEMORY OF LISA JANE BROWNE Lisa was a children`s nurse at The Countess of Chester Hospital, she and her husband had just moved into their dream home and were planning to start a family, she had recently achieved her childhood ambition of becoming both a general trained and also a paediatric trained nurse. She died suddenly in her sleep on 10 January 1998. Lisa`s Mum and Dad had to wait 8 months for the results of the inquest into Lisa`s death. Her father Terry was found to have Long QT Syndrome. For six months or so before her death she complained of chest pains, palpitations and tiredness. She went to her G.P who diagnosed depression, and put her on a course of anti-depresents. Lisa seen here with Doreen
Since Lisa`s death Doreen has been raising awareness of CRY and has been very busy spending hours on end writing to local businesses to get funding for her to take part in the CRY Counselling Course which is currently under way. With special thanks to:MBNA International Bank £500.00, Bank of Scotland (formerly Capital Bank) £450.00, Castle Cement £250.00, ASDA Queens ferry £201.12, Convatec Medical Equipment (Deeside) £100.00, Wepre Pharmacy £50.00 and finally P & A Davies Bakery (Chester) £20.00. Doreen says “I am extremely grateful to the local businesses who have donated towards my course costs. The course will enable me to help local families who have lost someone to sudden adult death syndrome in a more professional way”.
AN INCREDIBLE ÂŁ8,604.41 HAS BEEN RAISED Over the last 2 years we have been fundraising in Weymouth. Initially it started when we opened a shop and put a CRY tin on the counter together with a leaflet and badge (which was made by CRY on a design which Laura's Art teacher had drawn of a star rising from the water).
Laura seen here at a swimming competition with Olympic gold medal winning swimmer David Wilkie and athlete Kriss Akabusi
All of Laura's class at the Wey Valley School bought the badges along with many other children and parents. (See Kids for CRY) Several months after Laura's death, Ben Daniels one of the older swimmers at Laura's Swimming Club Thornlow Tornadoes, came and asked if he could arrange a 5 A-Side Football Tournament among the other members of the club. The first time Laura swam at the club Ben was 18 and Laura was 12. We watched as they ended their first lap and to my horror Laura squirted drink from her water bottle onto Ben! I watched expecting Ben to go potty but Ben turned around and smiled. Laura always got away with mischief. Ben said it was her smile and ability to get on with all ages. It was this lasting impression which had touched him. The tournament was a great success and extremely competitive especially amongst the Dad's! Ben Photo shows The Moss Family with Tina Roebuck (ex-mayor of Weymouth & however could not Portland) presenting an ECG Machine to the children's ward at Dorset County Hospital. take part since had had sprained his ankle the day before playing football. The total amount raised was staggering ÂŁ1,100. Councillor Tina Roebuck was Mayor for a year and chose CRY as
IN MEMORY OF LAURA MOSS one of her Charities for the year - her son and granddaughter were friends of Laura at the Swimming Club Thornlow. What an inspiration she was. Selling apples for £1 to all at the Weymouth Council Offices. She was air lifted out of the sea by a helicopter, which I know she was very nervous about. We arranged a Laura Moss Fun Day with rides, stalls and absailing that was not as much of a success as we would have liked mainly because it was the hottest day of the year and many went to the beach instead! We did however raise £900 which did cover our costs. We received many donations of prizes from local Companies for the "Mayor’s Bash". Tina decided instead of having a Mayor’s Ball to have a meal and Bran Tub organised instead at the Pavilion. Each person was asked to buy a £5 ticket for a huge bran tub, 100's of prizes and raised over £1,000. Weymouth Operatic Workshop entertained with a wonderful performance of songs from the shows. They have been fund raising on several occasions. At the end of her term of office she gave us a cheque for £6,200.06p - what a tremendous raising of awareness locally of CRY's aims. (See Raising Awareness) Two inmates at the Portland Young Offenders Institute raised £500 for CRY in Laura's memory. James Delee saw a CRY Update, which a friend of ours, a Prison Officer in charge of his wing, had taken in and was so moved, wanted to do something to help. He intends to carry on and do some more fund raising and says it will give him something to work for. (See Raising Awareness) Since then another £267.64 was raised on top of the money James Delee, from Portland Prison, has already raised by organising a sponsored run. Gloria & Alan seen here with Laura
The Dorset Echo made a kind donation of £120 and Lynne Mullins and her daughter have raised £82 over the last two years, Carol singing for CRY. Gloria Moss.
CRY COUNSELLING COURSE 2001- 2002 The CRY Counselling Course is being held throughout 2001- 2002. Participating students are finding it challenging, exhausting, nerve wracking and very worthwile. Course Tutor Julia Cayne has said how delighted she is with the commitment and the responsiveness of her group of trainees. This year the course is being held at the CRY Office, and we have been making full use of our awesome CRY Van, as this can be converted into a eleven seater Minibus which has proved invaluable for transporting our students to and from the office. On the course this year we have, from the office Fran Walton, Manjula Radia & Tony Hill and our families are Doreen Harley, Margy Al-Chalabi, June Bolton, Mandy Edgar, Paulette Smith, Lisa King, Dee Jordan, Gloria Moss, Alison Doyle & Keeley Ashley. Many of our participants have approached local businesses and have been delighted by their generosity in helping fund the cost of their course.
HOUSE OF COMMONS OFFICIAL REPORT PARLIAMENTRY DEBATE 21.06.01 "I expected the house to be full of noise and life, as you get from children, not silent through death and loneliness ‌.. There is no structure to my life except for my work and my efforts to ensure that someone else might not have to go through this ‌.. I can do things for other people, but I can do nothing for myself."
HOUSE OF COMMONS OFFICIAL REPORT PARLIAMENTARY DEBATES (HANSARD) THURSDAY, 21 JUNE 2001 Heart Disease (Young People) Motion made, and Question proposed, That this House do now adjourn. - (Mr Kemp.) 7 pm Dr Julian Lewis (New Forest, East): It is with some trepidation that I rise to address the House on the question of cardiac risk in the young, or sudden death syndrome. I say 'trepidation' because it is a subject on which I am by no means an expert. Therefore, I am grateful to see that a number of colleagues are nevertheless remaining for the debate. I wish to do justice to a fine young man who I am proud to have as one of my constituents. His name is Adrian Woodhead. Adrian was married to Sarah and they were together for 10 years until, in 1997, just before Christmas, Sarah, who at the age of 28 had never been ill, had been very fit and was a non-smoker, suffered a massive heart seizure and died.
Indeed, Adrian does a great deal for other people. At the time of the tragedy, he was an assembly line worker at Ford's. Since then, with great grit and determination, he has retrained as a police constable. When he passed out, he was awarded a baton of honour. He is a passionate exponent of the need to warn people about sudden death syndrome and its risk for the young. These are the three areas that Adrian has drawn to my attention: the need to raise awareness, the need for screening and the need for research. I shall address those in turn. On the need to raise awareness, it is estimated that at least four young people in the United Kingdom die every week for sudden death syndrome; that is more than 200 tragedies every year. There is a great need to raise awareness among the public, so that, in those cases where symptoms begin to show themselves, they will be not lightly dismissed but investigated.
There is a need to raise awareness among general practitioners, so that, when young people go to see GPs with telling but not very severe warning symptoms, the GPs will act perhaps a bit more promptly than they do at present. In particular, GPs should be inquiring more whether other members of the family of the young person concerned have died young from heart failAdrian and Sarah had been hoping to start a ure, heart seizure or some other aspect of family soon. He has movingly written to me sudden death syndrome. If there is some history of that in the family, the young peoabout his feelings after that tragedy: ple should be screened.
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There is a need for greater awareness on the part of coroners. All too often, when tragedies happen and young people die unexpectedly, the cause of death is given as accidental, natural causes or even, incorrectly, epilepsy.
More than half of the 200-plus young people who die so tragically every year could be saved by medical intervention and change of life style, particularly because so many of those who die are very active. They are particularly likely to be engaged in serious and energetic sport, and sometimes The great problem with sudden death synthey are engaged in professional sport. I drome - cardiac risk in the young, or whatrecognise that we are talking about very ever one chooses to call it - is that one does serious conditions and that between one not usually see it coming, and when it hap- quarter and one third of those who are vulpens it is too late. Screening is common nerable will die regardless. In other words, policy for cervical smears and for breast between one quarter and one third of the tests. With such conditions people can see 200-plus people who die each year from the disease coming and screening is the conditions will probably suffer the same accepted as a technique. It is a fact that an outcome regardless of whether their condiordinary electrocardiogram will pick up the tion has been diagnosed in advance. majority of the conditions constituting sudNevertheless, as I said, it is vital that peoden death syndrome. ple know what they have to contend with. After the detection of such a condition, various prospects open up. There is the prospect of remedial action by implant, the prospect of remedial action by drugs, or the prospect of remedial action by changing one's life style. However, even in cases in which nothing is going to work and a fatal outcome cannot be averted, at least those who are subject to the genes responsible for those conditions can prepare themselves and their families for what will come, in the same way that families can prepare themselves when a child has a known terminal illness. People can do things now rather than postpone them, and they can choose what to do about whether to pass on the gene by having children. Sudden death syndrome is a composite term for 10 main conditions. Hypertrophic cardiomyopathy, or HCM, accounts for about 30 per cent of the cases; arrythmogenic right ventricular caradiomyopathy, or ARVC, accounts for about 20 per cent of cases; and long QT syndrome accounts for another 10 per cent. Of those three categories, which account for 60 per cent of the cases generically known as SDS, four fifths would be detected by ordinary electrocardiogram screening. If they were caught, the very least action that would be taken would be an echocardiogram - known as an ECHO - which is an ultrasound of the heart.
In professional tennis there is something called the Karen Krantzke sportsmanship award. It is given in memory of Karen Krantzke, an Australian doubles player who died at about age 30, in the mid-1970s, at the height of her powers. A friend of hers was Mrs Alison Cox, who is the wife of Mark Cox - who as we all know was the No.1 British tennis player in the 1970s. In 1992, Mark and Alison's son Steven went to college in America on a sports scholarship. A few years earlier, a young man had died at that college from an SDS condition. Fearing future litigation, the college initiated a programme of automatic screening for young people on its intensive sports programmes. Consequently, it was discovered that Steven Cox, who was himself on the verge of a glittering tennis career, was suffering potentially from ARVC. Following that discovery and his decision to change his life style and forgo the professional tennis career that would otherwise have undoubtedly been his, he is still healthy at the age of 27, and it may well be that he owes his life to that screening in America. It occurred to Alison Cox that not much had happened between the tragedy of Karen Krantzke in the mid-1970's and her own son's narrow escape in 1992, so she set up
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Cardiac Risk in the Young, which aims to raise awareness and to exert pressure for more screening, in the hope that conditions here will begin to match those in other parts of the world. For example, in this country there are only 17 implants per 1 million citizens. In Germany, there are more than 60, and in America more than 200. The aim of CRY is to identify, screen and treat those most at risk; first, those in whose family there has been a death at a young age, and secondly, those who are engaged in serious sport. Its ultimate aim is the routine screening of those who participate in any serious sport, as is the case in Italy. So far, CRY's pilot programmes to test the effectiveness of ECG machines in detecting hidden heart conditions in young people have led to the placing of 26 machines in local communities, worth a total of ÂŁ130,000. The organisation has also funded a ÂŁ120,000 ECHO machine, which is needed for heart ultrasound - the vital next step after an ECG has detected the possibility of an SDS defect in a young person. Section 64 of the Health Services and Public Health Act 1968 gives the Secretary of State power to make discretionary grants to voluntary organisations in England working in support of health objectives of which the Government approve. CRY has tried five times to get a grant for its important work, and I wonder whether the Minister will be able to give us any encouragement and lead us to hope that a future application will be more successful.
tweaked, adjusted and serviced as required. Drugs to thin the blood and prevent clotting are another form of medical intervention. Is the Minister satisfied that enough is being done to increase the number of implants that are being supplied, which would have to be tripled to match the number in Germany, and that enough research is being done on drugs to alleviate the dangers? We must also consider genetic research. One of the objects to screening is the expense of ECGs and ECHO tests. I would be grateful if the Minister would indicate whether progress is being made on identifying a simple blood test for the gene the causes those syndromes. Does she accept that if that could be done, the expense argument against screening would fall? If so, would some of her objections to screening be overcome? I am coming to the end of my remarks, but refer to a letter that the Minister wrote to Earl Howe on 8 May. It is clearly designed to be helpful, but at one point it states that studies show that "screening does not identify all those affected" by SDS "and also that there is little evidence at present that treatment before the onset of symptoms alters the course of the disease".
I feel that the Minister has been supplied with information that may be a little out of Adrian's third point concerned the need for date. As we have seen, implants can make the research. I have referred briefly to a considerable difference to significant implants. Internal cardiac defibrillators, or numbers of people surviving an attack of ICDs, kick-start a heart that has gone into that sort. It is true that sometimes there are seizure and regulate it after the attack. Five symptoms before a potentially fatal attack years ago, they were the size of half a but, all too often, they are not recognised, brick; now they are the size of a matchbox. either by the potential victim or by his or her Five years ago, they required major surGP. gery; now they can be implanted under local anaesthetic. Five years ago, they had There remains the question about the to be sited deep in the stomach; now they ethics of screening and whether or not it is a good thing. In the country as a whole, are sited very near the surface, just below 10,000 to 15,000 people may be at risk, the collar bone, so that they can easily be
HOUSE OF COMMONS OFFICIAL REPORT
whereas "only" 200-plus per year will suffer the fatal outcome. There remains the ethical question whether it is right to worry the large number to save some of the small number. I believe that the evidence is in the affirmative. Alison Cox told me that of the hundreds of people affected by cardiac risk with whom she has dealt, only one mother said that she wished she had not known that her child was vulnerable. I am glad to say that, so far, her child has not suffered an attack: long may that continue.
I pay tribute to the dedicated work of Cardiac Risk in the Young and, indeed, other voluntary organisations that provide a counselling network to help families who suffer such a loss. Support from people with real experience of the condition can certainly be a remarkable comfort to those who live on.
CRY and other organisations with an interest in the conditions have made a plea for greater awareness of risk factors among health professionals. The hon. Gentleman The final word on the ethics of screening mentioned the need to increase awareness should go to Adrian Woodhead, the young and to provide more information. I agree man to whom I referred at the beginning of wholeheartedly with the importance of doing my speech. He told me: so and I have asked officials to investigate the potential for using the new forms of "I'd have loved to have had a couple of chil- media that are now available to us for comdren with Sarah; even if I'd known they'd municating with health professionals and have been with me for a limited time. It members of the public - including, for examdoesn't matter what conditions you have ple NHS Online and the electronic library you just deal with it. But to deal with it, for health - to provide updated information you've got to know." about risk factors. On Adrian's behalf and on behalf of all the young people who are vulnerable to the condition, I hope that the Minister will have something positive to say this evening.
Unfortunately, data on the true incidence of cardiomyopathy are hard to come by. Some studies put the incidence of hypertrophic cardiomyopathy at one person in 500. That is one of the problems that we 7.18 pm encounter when we assess a proper policy The Parliamentary Under-Secretary of State response to the condition. Too little is for health (Yvette Cooper): I congratulate known in many areas. As the hon. the hon. Member for New Forest, East (Dr Gentleman rightly pointed out, little is also Lewis) on securing an early Adjournment known about the number of deaths caused debate in the new parliamentary Session by cardiomyopathies. The Office for and on choosing to bring these important National Statistics recorded 35 deaths due issues to the attention of the House. He to sudden adult death syndrome in 1999, spoke movingly about the plight of his con- but this is almost certainly an underestimastituent and his constituent's family. This is tion. I take seriously the hon. Gentleman's an area that does not always get the atten- point about the problems with the coroner tion that it deserves, but one that can be system and the inability to make a full devastating for families when an apparently inspection of the heart tissue in a post fit and healthy young person suddenly dies mortem following a sudden adult death. He without warning. In an age when we have may be aware that the Home Office has come to associate death with old age, announced a full review of the antiquated rather than youth, young people being coroner system, which includes public struck down before their potential is fulfilled, health specifically in its terms of reference. without the time for people to adjust and I shall ensure that the points raised this say goodbye, can be almost too much to evening are passed on to that review. bear for grieving families, including parents who lose loved children and young people. Research is being carried out at the Imperial college school of medicine under
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Professor David Woods into the incidence of sudden adult death syndrome, and I believe that the research will be published later this year. We look forward to its conclusions to enlighten the policy process further.
hypertrophic cardiomyopathy remains to be determined. The hon. Gentleman mentioned genetic screening, which has huge potential in many areas and its development may take us in many directions. I understand, however, that in an editorial in the July edition of the journal Heart, which The hon. Gentleman mentioned a national will be published next month, the leading screening programme of young people to expert in the field, Dr Michael Vincent of the identify those with cardiomyopathy and university of Utah, offers a conclusion on those who are at increased risk of sudden the present evidence base with regard to death, and CRY has also done a lot of work genetic testing for these conditions. The on that issue. The national screening com- article states: mittee has looked at those proposals very carefully. For a screening programme to be "Knowing the diagnosis, genotype or mutapracticable, there needs to be a clear tion type does not clearly influence treatmeans of defining cases of the disease and ment options or outcomes. Thus, there the ability to make a prognosis on the basis seems to be no compelling reason to perof that definition. In addition, there needs to form genotyping for these clinical groups." be good evidence that early intervention can improve the prognosis. In other words, we In other words, on the basis of what we need evidence that a national screening know at this stage, Dr Vincent concludes programme would make a real difference to that information from gene testing would not health outcomes rather than simply provide be of practical use, given the limitations of information that might have no impact on our knowledge about how to improve outthose outcomes. comes. In 1999, the Department's national screening committee commissioned Dr Stuart Logan of the Institute of Child Health to examine the feasibility of population screening for hypertrophic cardiomyopathy. His recommendation was that population screening would not meet those key criteria. He argued that the most commonly used case definition - left ventricular hypertrophy on echocardiography - would miss some people at risk and would identify significant numbers of people whose life span is likely to be no different from that of the general population. He also concluded that studies have suggested that starting treatment before the onset of symptoms - the point that the hon. Gentleman quoted from my letter - makes no difference to the course of the disease. In other words, no clear benefit would accrue to those told as a result of screening that they had a particular condition. Dr Logan's conclusions were accepted and endorsed by the national screening committee.
I take very seriously what the hon. Gentleman said about not simply assuming that it is better for people not to know about their condition. It is wrong to make such judgments on behalf of other people. We must accept that giving people information about a condition that we may not be able to improve or for which we cannot offer alternative treatments or life styles can have psychological consequences. However, I agree that we cannot make presumptions about what people should know about their own health. My experience is that people increasingly want more information about their health and about the options open to them. They at least want the chance to decide for themselves what happens. We must also bear in mind the evidence that exists about whether there is any positive benefit that should be taken into account. The 1999 study showed that there was insufficient evidence that the sort of diagnosis that would flow from a screening programme would be of benefit, but that is
Similarly, the role of genetic screening for not to say that we should accept the find-
HOUSE OF COMMONS OFFICIAL REPORT
ings of that study and do nothing to alter the further evidence. status quo. Finally, I agree with the hon. Gentleman The hon. Gentleman asked whether that research is the way forward. He asked implantable cardioverter defibrillators would about section 64 funding for CRY. take us further and change the position, and Department officials will meet CRY later this I shall ask the national screening committee summer, and I hope that they will be able to to advise me on that. The National Institute discuss the priorities that should be taken for Clinical Excellence issued guidance in into consideration when section 64 funding September 2000 on the use of such defibril- is awarded. The hon. Gentleman will know lators. Implementation of that guidance in that the contest for that funding is sharp the NHS is expected to cause implantation every year. rates to rise from the present 17 per 1 million people to around 50 per 1 million. I thank the hon. Gentleman for raising Additional resources have been made avail- these important matters, which are able through health authority allocations to extremely serious for the families involved support the implementation of all the NICE and especially for the constituent to whom recommendations. he has referred this evening. I shall write to him with more information. Whether that will change the position in terms of screening depends on whether Question put and agreed to. there is evidence that outcomes showed an Adjourned accordingly at half-past Seven improvement for people diagnosed with the o'clock. condition at an early stage. We simply do not have evidence about how many casualties of sudden death syndrome would have benefited from ICDs, nor about how many people who might be diagnosed as a result of a screening process would also benefit from the implants. We need to know the answers to those critical questions to decide whether a screening programme was a good idea. We also need more information about appropriate ways to treat the condition in general. The Cardiomyopathy Association, working with Professor William McKenna of St George'' Hospital medical school, has been developing guidelines on the diagnosis and management of hypertrophic cardiomyopathy. We await those guidelines with interest, and will consider how best to disseminate them when they are published. I shall ask the national screening committee to consider whether there has been sufficient development - in terms of evidence and new treatment possibilities - for it to update the 1999 review. I will write to the hon. Gentleman on that subject, as I consider it important for us to keep an open mind and to review matters as research uncovers
BULLETIN BOARD Zip Wires, High Ropes Courses and Raft Building - you can be taking part in all these exhilarating activities and more as part of a unique two-day residential adventure Challenge being promoted by CRY. CRY is currently looking for teams of eight people to take part in this nation wide Team Challenge which is taking place at purpose-built Outward Bound centres set in idyllic locations across the UK. Teams take on a variety of mental and physical challenges over a two-day period which is designed to promote teamwork within an enjoyable outdoors environment in the Lake district, North Wales or the Scottish Highlands. No previous experience is needed as all training is provided and if your team raises the minimum sponsorship level of £2,800 for CRY then all your team members get to take part for free! If you would like more information please contact the office. When sending in Raising Awareness articles for the brochure please whenever possible state the name of the paper, date of publication. The Editor`s name and a contact number.
Before you embark on any committment to project funding please call JAN SMITH for details of forms required to regulate this. This should be a great timesaver, as you need to check your information is correct before proceeding. The definitive guide to CRY projects for ring fenced funding is now available from Jan.
We now raise money by recycling old mobile phones. If you are in contact with a company who is replacing their mobile phones, or simply have access to a large number (more than 10), please contact the office and we will help you dispose of them while benefiting CRY. (Phones should include batteries and chargers)
SPECIAL THANKS
Give as You Earn
To Benita Davies for kindly letting us use her fundraising in memory of her son Paul to pay for the CRY Van signwriting
If you make regular donations to CRY you may be interested in donating through your payroll. This enables you to make a pre tax donation with a 10% bonus added by the government if made through ‘Give as you Earn’
MOBILE PHONES - Recycle and donate to CRY
BULLETIN BOARD On Thursday, 21 June Dr Julian Lewis ( Member of
Dr Julian Lewis M.P
Parliament for New Forest, East) had an Adjournment Debate in The House of Commons on cardiac risk in the young. The responding Minister was Parliamentary UnderSecretary of State Yvette Cooper. Transcripts of this Debate are available from the CRY Office. Please send an A4 SAE . Attending were the CRY team of Lada, Steve, Alison, Dave, Jan & Tony.
CRY NOW HAS A NEW WEBSITE ADDRESS WHICH IS
www.c-r-y.org.uk
EYE ON WALES - SADS interview On July 8, there was a documentary including interviews with a number of our familes on BBC Radio Wales, called 'Sudden Adult Death Syndrome'. The transcript for this has been placed on the website www.c-r-y.org.uk/eye_on_wales.htm. Please send a self addressed envelope with ÂŁ1 to the CRY office if you would like a taped copy of the SADS interview.
E MAIL CONTACTS CRY head office - cry@c-r-y.org.uk Keeley Ashley - keeleyashley@aol.com Roy & Gill Ball - royandgillball@selcroftavenue.freeserve.co.uk Nigel & Jenny Cole - nigel1949@hotmail.com Jo & Charlie Cross - chascross@compuserve.com Caroline Gard - carolinegard@hotmail.com Alan & Gloria Moss - mosses@cherrystonescottage.freeserve.co.uk Tim & Sylvia Salisbury - thesalisburys@cwctv.net Granville Staff (work) - granville.staff@darwen.deconorth.com Jan Smith - jsmith@sghms.ac.uk Adrian Woodhead - adrian@woodhead88.freeserve.co.uk
More and more people are using email as a fast and convenient way of communication. If you would like to be put on our CRY list, please email us with your details.
BULLETIN BOARD RING FENCED FUNDRAISING
Would you like to run in The London Marathon for CRY?
Please remember that unless you notify us and get the necessary documentation and confirmation from the office for “ring fenced” fundraising before you start a fundraising venture all funds raised will be used for CRY Core Funding. Retrospective “ring fencing” is unfortunately just not possible. CRY cannot be responsible for any “ring fenced” fundraising unless it has been authorised. “Ring fenced” fundraising is for specific projects only. After the successful conclusion of the authorised project fundraising will be directed again to CRY core funding. Because of the appeal of certain projects, some will have a wait list Have you run in The Flora London Marathon for CRY? Did you raise at least £1,000? Would you like to be featured in our Update Brochure? Could you write an account of your run in 400-700 words? Can you supply a photo of yourself at the event? If you have answered ‘Yes’ to all of the above we would be very pleased to hear from you on 01737 363222
Mark Fenlon CRY for Core Funding 2001
If so please contact Steve at the office on 01737 363222 APPEAL FOR CURTAINS We are currently seeking Stage Curtains to cover our ‘up and over’ door downstairs, if anyone can help please call the office.
If you would like CRY to consider any item for Bulletin Board please fax details (including your item) through to Steve on 01737 363444 Please bear in mind when organising fundraisings that it would be brilliant if you can take photos of your great day. It would also be extremely useful if, when you write in to the office, that you clearly state how much was raised, and by whom.
BULLETIN BOARD Me and Julie Tanner finalising her Kids for CRY section of the Update
It is with great sadness that I have to tell you all that I am leaving CRY. I have been here for 1 month short of 5 years now and it has been incredible working with such a dedicated team and for such an awesome charity. Over the years I have been very fortunate dealing with our families who are just amazing, and I have made many good friends. I will however be helping with some Screening events, continuing with the CRY Counselling Course and for consultation. Following my Mum`s sudden death in February I feel the time has come for a change, and do feel the need for some time to myself. I would like to wish you all the best and to let you all know what an inspiration you have been to me. Love
The Early Days! me and best friends Mark Fenlon & Lorraine Cox. Our Commando Challenge Team of ‘The Outcasts’. Who talked us into doing this then?