A pioneering new development to test children born in 1995 across the South East of England
Every day at least one family in the UK (12 young, apparently fit people, die every week) will suffer the trauma of loosing a young (35 and under) person to an undiagnosed heart condition. These genetic conditions drastically affect thousands of people every year.
The national charity, Cardiac Risk in the Young (CRY) will announce on the eve of its annual awareness week (17 October 2009) the first initiative in the UK to screen every 14-year-old born in 1995 (the year that CRY was founded) across the South East.
This launch of this important new programme coincides with the announcement of the world’s first specialist, multi-disciplinary ‘centre’ dedicated to young* sudden cardiac death, to be based at St George’s Healthcare NHS Trust, South West London.
(*aged 35 and under)
Dr Steve Cox, Director of Screening at CRY says; “We are currently screening 1000s of young people every year aged between 14 and 35. However, this is just the start. We need to know more about what a national screening programme will “look like”, when it is best to introduce screening and how to make this process as easy as possible for every young person who wants to be tested.”
The screening initiative will help to lay the foundations for a national programme in the future. The focus on 14-year-olds is because post-puberty is the earliest age that proactive screening is viable. This unique programme has been made possible thanks to a charitable grant from ICAP, the interdealer broker.
Dr Cox adds, “It is right that we aspire to offer testing to young people at a time when they are making important decisions about their future – and before they are forced to make ‘sacrifices’ and changes to their ‘dreams’ and aspirations. That is what this screening programme is about – a commitment to the future of young people.”
For the first time, this new centre will combine three essential features of CRY’s mission to eliminate young sudden cardiac death: offering services for affected families, competitive athletes and the general population.
‘Affected families’ will attend the first dedicated inherited cardiovascular disease and sports cardiology clinic in the world. The ‘general population’ will be able to access nationwide screening services through the rapidly developing mobile screening programme co-ordinated from the Centre at St George’s Healthcare Trust. Elite athletes will attend the world renowned CRY Centre for Sports Cardiology.
Spearheaded by the charity’s consultant cardiologist, Sanjay Sharma, the new centre will provide a ‘one stop shop’ for young people and ‘affected families’ who wish to be screened for potentially life-threatening cardiac problems.
Chief Exec and Founder of the charity, Alison Cox MBE, says; “This ICAP funding is a huge milestone for CRY and takes us another step closer to realising our dream of being able to offer heart testing to all young people in the UK. I launched CRY 14 years ago in 1995 – and it therefore feels ‘right’ to be offering young people turning “14” the opportunity to be screened by some of the world’s leading experts and to hopefully to be able to reassure them that they are in good health.
“Those that play sport are particularly at risk, if they carry an undetected heart condition, and so we are really pleased to have this opportunity to offer these fully funded tests which will unquestionably save lives.”
She continues; “80% of young people have no signs or symptoms and so the only way to detect a potentially sinister cardiac abnormality is by having a simple screening test.
“These are all treatable conditions and, if diagnosed in time and with appropriate treatment, lives are saved. Young people, with their whole lives ahead of them are dying needlessly and their legacy of horrific suffering for those that love them is truly unbearable.”
Experts at the Centre will be able to support teenagers in the journey from screening through to possible diagnosis and treatment and, where necessary, counselling and support. Specialist researchers will also be based in the new centre working on the genetics of hereditary cardiac defects and helping families to understand their ‘heart history’.
Dr Sharma says; “ONS stats indicate that 600 young people die suddenly every year in the UK from sudden cardiac death – and that figure could be a conservative estimate. These young people are in the prime of their lives – and no family should have to go through the terrible heartbreak of losing a son, daughter, partner or sibling without warning and without explanation.”
“The tragedy is that these deaths are not ‘freak’ accidents. They are preventable deaths that could have been avoided if young people – especially those involved in regular sport – were being offered screening. I am delighted to be taking up this exciting position and believe this new unit will play a vital role in increasing knowledge and awareness of these devastating conditions among the public and health professionals both in the UK and on an international level.”
The project is also being supported by healthcare company Philips, who has donated state of the art screening equipment. Earlier this year, CRY launched a 10 week mobile screening programme with Philips (testmyheart.org) testing around 2,500 young people in locations across the UK – at least 14 people were found to have serious cardiac conditions.
Screening saves lives – and parents, young people, teachers or sports clubs can access CRY’s specialist service by logging onto www.c-r-y.org.uk. Subsidised screening costs £35 per person but will be free of charge for all children born in 1995, commencing early 2010. Please call 01737 363 222 for more details.
