25,000 appointments cancelled due to COVID restrictions leaving people age 14-35 at risk of hidden heart conditions
A leading heart charity – which would usually provide free heart checks for over 32,000 young people every year in the UK – has warned of the potential impact of having to halt its specialist services over the past 8 months.
The campaign is backed by a family from Surrey whose 14-year-old son was diagnosed with a dangerous and potentially life-threatening heart condition (Wolff-Parkinson White syndrome) 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.
But the outcome could have been so different…
Powerful feature articles focussing on the recent experience of Finn Mason – and fronted by his mum, Niki, who has become a key advocate of the campaign, have been published across the Surrey and SW London media, as well as full-page articles in the national press, including the Daily Mirror, Daily Express and Daily Record, helping to generate incredible awareness for CRY and its work.
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 assessed by a specially trained cardiologist.
Dr Steven Cox, CEO of the charity Cardiac Risk in the Young (CRY) which was established 25 years ago to support families affected by YSCD and to help prevent these devastating young deaths, 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-threating 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.
Dr Cox continues; “We’ve worked really hard to ensure our screening team is appropriately prepared [in terms of PPE], 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.
“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 majority of CRY’s 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 CRY’s mobile cardiac screening service comes to a local venue. In normal times, CRY-funded screening clinics are also held twice a month at St George’s Hospital, South West London, home to CRY’s pioneering Centre for Inherited Cardiac Conditions and Sports Cardiology.
The CRY 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.
Professor Sanjay Sharma (St George’s, University of London) is CRY’s Consultant Cardiologist and oversees the screening programme. He concludes;
“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.
For more information or any press inquiries about CRY, please contact; firstname.lastname@example.org