CRY usually provides free heart checks for over 30,000 young people every year in the UK, but we have had to halt our specialist services over the past 8 months.
One of the many families supporting CRY’s screening programme is the Mason family from Surrey. Niki’s 14-year-old son, Finn, was diagnosed with a dangerous and potentially life-threatening heart condition at a CRY screening session shortly before lockdown and the suspension of the service. Due to his swift diagnosis – despite displaying no worrying signs or symptoms – he has now been successfully (surgically) treated and back living a normal, safe, and active life.
Young sudden cardiac death (YSCD) claims the lives of at least 12 seemingly fit and healthy young people every week in the UK. In around 80% of cases of these arrhythmias and heart muscle conditions (cardiomyopathies) there will have been no signs or symptoms – but the vast majority of the underlying and ‘hidden’ issues that cause such fatal cardiac arrests can be identified using a simple ECG test, which is then read and assessed by a specially trained cardiologist.
CRY Chief Executive Dr Steven Cox explains: “CRY stopped screening on March 16th, 2020, as part of the UK’s initial national lockdown measures. This was around the same time that NHS Breast and Cervical screening services were temporarily stopped – although these are now coming back into practice – and understandably there were immediate concerns about ‘footfall’ (we test around 100 people a day at a CRY testing session) and PPE health and safety needs of our medical staff.
“However, now, 8 months on, we have had to cancel over 21,000 screening appointments and we remain uncertain as to when and how we will be able to resume our internationally acclaimed screening service.
“CRY research and international statistics suggest this current hiatus may have already resulted in more than 70 young people NOT receiving a diagnosis of a potentially life-threatening condition and the treatment, lifestyle advice or surgery that would reduce their risk of suffering a cardiac arrest. Worryingly, our waiting list of young people who have registered an interest in screening now stands at just under 40,000.
“Every subsequent month that screening events are cancelled or postponed will result in the loss of a further 3,000 appointments and another 10 people being left to live with an undiagnosed cardiac condition that could cause them cardiac arrest and sudden death. It is important to note these figures do not include the 100s of young people who are identified with cardiac conditions through screening which may not be immediately life-threatening, but will lead to serious problems in their fourth or fifth decade of life if they are not identified, monitored and treated.
“We cannot allow these young people to become part of the devastating ‘12 a week’ statistic.”
“We’ve worked really hard to ensure our screening team is appropriately prepared [in terms of PPE],” Dr Cox adds, “with revised protocols in place [in terms of social distancing and enhanced cleaning] and are ready to get back on the road.
“But what we desperately need – once this second lockdown is eventually eased – is access to suitably large venues. CRY’s families and fundraisers would usually be able to secure the use of schools, sports clubs, 6th form colleges, universities, community centres and church halls etc. at no charge. Understandably, these types of venues cannot currently invite any additional people to come onto the premises.
“So, what we’re hoping for – as soon as it is appropriate to so – is to hear from the owners and managers of large and spacious venues such as sporting arenas, mothballed stadiums, often with large, modern – and currently empty – conference facilities, which might be appropriate for hosting CRY screenings.
“We are doing all we can to resume CRY’s screening programme safely, rebooking events and working through our ‘backlog’ – and to ensure that awareness of the importance of cardiac screening in young people does not diminish.”
The vast majority of our community screenings are funded by bereaved families, who have been affected by a young sudden cardiac death, so there is no charge to the individual when our mobile cardiac screening service comes to a local venue. In normal times, we also fund Saturday screening clinics which are held twice a month at St George’s Hospital, London, home to CRY’s pioneering Centre for Inherited Cardiac Conditions and Sports Cardiology.
Our screening programme uses a very simple, effective and non-invasive way of diagnosing most cardiac abnormalities. It is a quick, painless and affordable procedure called an electrocardiogram (ECG). If a young person is found to have an abnormality, CRY will also conduct an echocardiogram (ultrasound) on the same day. To date, over 220,000 young people have been screened by CRY – and many young lives saved.
In Italy, where screening is mandatory for all young people engaged in organised sport, they have reduced the incidence of young sudden cardiac death by 89%. This is because sport – whilst it does not actually cause sudden cardiac death – can significantly increase a young person’s risk if they have an underlying condition.
CRY Consultant Cardiologist Professor Sanjay Sharma, who oversees the screening programme, said concluded with the following when talking about the impact of :
“Although cancellation of these clinics is completely understandable to minimise the spread of the viral infection, there will be a number of young people who will not receive a diagnosis and treatment of a potentially serious, and probably silent, cardiac abnormality. I therefore really hope these individuals will still be motivated to sign up to be tested again in the future, as soon as we able to resume our services.”