By Alison Cox
Founder and Chief Executive
The highlight of my Autumn has been the opportunity of a whirlwind trip to The Highlands and Islands of Scotland to take the first steps in organising our Ethical Approval programme which we anticipate holding on the island of Lewis in the Outer Hebrides in June 2002. On the way to my remote destination I also took the opportunity of a flying (literally) stop-over to link up with our newest Representative Andy Tait who travelled from Fife to Edinburgh with his wife Maggie so that we could meet.
The ECG Testing programme in the Western Isles was initiated by Alex and Fraser Fotheringham after their 24 year old daughter Joanne, a primary school teacher in Stornoway, was found to have died in her sleep. On the tiny windswept little island of Lewis in the Outer Hebrides we received a wonderful response to our plan of screening the island’s schoolchildren with generous offers of help from all organisations involved.
After fighting so many uphill battles over the years to convince those in authority of the importance of cardiac testing it was very refreshing to be confronted with such overwhelming support for our campaign.
Our programme in the Western Isles aroused considerable media interest with radio coverage both locally and by BBC Scotland and 3 slots on BBC TV nationwide wide news. This included moving interviews with Alex Fotheringham talking about the devastating impact on her family of Joanne’s sudden death, and George Moodie, Joanne’s Headmaster on Lewis, explaining how the sudden cardiac death of a young and much loved teacher like Joanne effects the whole community.
Accepting an invitation to appear on the “chat” show Kilroy (viewing audience 1.4 million) is a decision that needs careful consideration and I would like to say a special thank you to Julie Chipperfield Carr and Mandy Edgar for their courage in going on for CRY to talk about dealing with the sudden loss of their young husbands from Sudden Death Syndrome.
This was an emotive and provocative programme, with the emphasis on the horror of such an event and no answers being encouraged on what could make the difference to a family affected by such devastating tragedy.
I was disappointed that the opportunity was not taken to highlight how lives can be reconstructed if the right support is available. Julie and Mandy both expressed frustration in not being able to say how much difference finding out about CRY made and how they felt for the first time that they were listened to, understood and able to access information on how it is possible for fit and healthy people to suddenly die with no apparent symptoms.
CRY’s screening programme was the focus of a slot in ITV’s “That’s Esther” emphasising the importance for youngsters to have proactive testing to confirm cardiac health. Caroline and Peter Gard were featured in this programme talking about the sudden death of their son Andy as he was getting ready for a game of tennis, together with an interview with CRY’s consultant cardiologist Dr Sanjay Sharma.
There was also an interview with National Coach Manager Jonathan Smith who spoke of the “win win situation” with The Lawn Tennis Association’s decision to include cardiac screening in their fitness testing programme. Jonathan articulated the simple common sense of ensuring that young people’s hearts were functioning properly before organised sport was encouraged, as is done in Italy.
Our screening programme with the Lawn Tennis Association dates back to our first testing with Professor McKenna at the National Championships in 1993 which included amongst other youngsters the now very famous Tim Henman.
The Children’s Heart Federation Conference on September 15th provided a ground-breaking opportunity for hundreds of parents affected by their children’s heart problems to express their views either by attending the Conference or writing in. Professor Priscilla Alderson of the Social Science Research Unit at the Institute of Education and myself facilitated 3 workshops on Informed Choice and have just submitted a 3,000 word report on the issues vocalised. This Conference was funded by The Department of Health who are dedicated to having a full review of the current status of paediatric cardiology.
I would like to thank Hilary Ellis for donating the lovely, and very topical CRY Christmas card illustrating a dove of peace that you will be receiving with this issue and (again!) thank Caroline Gard for offering to take responsibility for the very time consuming job of Christmas Card administration. Sending cards identifying CRY helps raise awareness of our work and we do hope that you will like and want to support our selection.
The CRY Sports Cardiology Centre has now received the ECG machine to be placed there in memory of Craig Rampton who died aged 20 whilst playing football in a Cup match in Portsmouth, and we have booked in our first 3 clients – a 15 year old club runner, an elite 24 year old bi-athlete and an 82 year old football referee.
It will service athletes of all ages, and our ultimate goal is to be able to subsidise those without funds by charges made to those that have insurance cover, or can afford private payment.
Our recent screening of the Junior Rugby players working with the English Institute of Sport identified a case or ARVC (the second most common cause of sudden death in Europe in young athletes) and shocking though this information must have been for the young man and his family to cope with, to know we have possibly saved another young life through screening is an important confirmation for all of us that are campaigning so vigorously for cardiac testing of our young people.