Response from Cardiac Risk in the Young to NSC announcement rejecting national screening programme
Leading charity responds to announcement from the National Screening Committee (30.07.15) recommending AGAINST the implementation of population screening to prevent sudden cardiac death in 12 to 39 year olds
Dr Steve Cox, Director of Screening and Research at Cardiac Risk in the Young (CRY) – a stakeholder in the long-awaited Government review, says:
“We are aghast and extremely disappointed to hear this announcement recommending against a UK-wide cardiac testing programme for the prevention of sudden cardiac death in young people. The National Screening Committee has let us down, it has let down thousands of bereaved parents and above all it has let down our young people and our future generations – including many aspiring young athletes and sports stars.
“Every week in the UK at least 12 young (ie under the age of 35) apparently fit and healthy people die suddenly from a previously undiagnosed heart condition – however, this is widely believed by experts in the UK and internationally to be a conservative estimate. For over 20 years CRY has been calling out to policy makers to stop pushing this issue “under the carpet.”
“In 80% of these cases there will have been no signs of symptoms which is why CRY believes proactive cardiac screening is so vitally important,
“This shocking announcement comes against a backdrop of widespread and world-renouned research – much of which is based on the unique data collated through CRY’s pioneering screening programme which now tests over 17,000 young people every year.
“CRY’s programme – overseen by one of world’s leading experts in inherited heart disease and sports cardiology, Professor Sanjay Sharma – works alongside sporting bodies such as the FA, RFU, LTA and “Team GB” to ensure all elite athletes are regularly screened and safeguarded. However, our main focus as we mark our 20th anniversary is those who are regularly involved in physical activity at a grass roots level, as well as all young people in our community.
“Research shows that one in every 300 of the young people we test will be identified as having a potentially fatal (yet, more than likely, treatable) heart condition and there is no doubt that screening saves lives. It is commonplace in the States and across Europe and in Italy, where screening is mandatory for all young people involved in regular, organised sport, the mortality rate has decreased by a staggering 89%.”
“It is never helpful for the Government to publish guidelines saying; “Sudden cardiac death in young people is always shocking and very sad. This is in part because it is so rare. The chances of sudden heart attacks in apparently physically fit young people are tiny.”
“Young sudden cardiac death is not “shocking and sad” because of its rarity. It is horrendous because a young person has died and the impact of this will rip families apart and throw shock waves through communities. It is an insult to the 1,000s of families whose children have died that policy advisors should be so dismissive and refer to the incidence as “tiny”.
“Whilst CRY will do all we can to prevent unnecessary deaths through screening and research whilst supporting families affected, so much more could be achieved if it was widely acknowledged that 600 young sudden deaths every year, 12 a week, is not “sad” or “tiny” it is catastrophic.
“We will not give up and we will continue to campaign for and fund greater access to free cardiac across the UK.”