Screening and its central importance to CRY

Alison Cox MBE
CRY Founder

Screening and its central importance to CRY – Alison’s Column Update 71

I first discussed cardiac screening for fit and healthy young people in 1993 with Professor Bill McKenna following family tests – before I had started my counselling training or had any thoughts of CRY. My background was in tennis and Professor McKenna was very interested in the prospect of screening the top tennis players. I knew Jeremy Bates (who later became CRY‘s first Patron) who was extremely supportive, and wrote to every ranked British player encouraging them to take the opportunity of being screened at the imminent National Tennis Championships.

It had recently shocked the UK tennis world when a very fit 18-year-old leading Welsh junior had dropped dead, at his home, as he stood up to turn on his TV. Although some of the young players were ambivalent about the screening, their coaches ensured they all took the opportunity offered. Not only were the coaches supportive, as well as Jeremy, but also the new Lawn Tennis Association

(LTA) medical director, Dr Michael Turner, who gave me great encouragement and said that he would definitely introduce screening into the junior programme. BBC Breakfast filmed both British No 1 players; Jeremy, and Jo Drurie, being tested at the Nationals, which sparked major interest in the initiative, creating press and media coverage and further requests for screening.

We had secured the interest of Acuson to provide their technicians – free – for our burgeoning screening programme, and who were also prepared to deliver an Acuson echocardiogram to any event without charge. The echo was crucial for the follow-up tests on those young people at our events who showed an abnormality. In the 1990s cardiologists were just beginning to take a significant interest in the heart muscle conditions of the left and right ventricle (called cardiomyopathies), and technician Annette Jones became increasingly committed to helping us, not only sacrificing her weekends to our screenings but also securing a 25% reduction in the amount required to purchase CRY’s first echocardiogram. It was a key factor in our first successful purchase, and it was only years later that I learnt that this “cost reduction” was in fact her personal bonus.

With Jeremy Bates’ support, and most crucially that of Sue Wostenholme, Director of Junior Tennis, I organised a time-consuming but successful “skipathon” for the junior tennis players, inviting all tennis-interested organisations to donate a prize. This list of (100!) prizes was circulated with the entry forms and the deal was that those that skipped for longest (witnessed on the submitted form by an adult) were, in order of merit, able to choose their prize. The response was brilliant and we raised £10,000 which secured the down payment on “Annette’s” echocardiogram. I made an agreement with Professor McKenna that the screening team could use our echo machine for our weekend screenings, and he could use it during the week for his “sudden death clinic” at St George’s. Thus St George’s became the first hospital in the country to have a dedicated facility for dealing with young sudden cardiac death.

Tennis was the catalyst for what became the CRY screening programme’s development. A lot of interest was generated and it was not difficult to get local media coverage for screenings. This
helped to raise awareness of young sudden cardiac death and attracted support from those affected. I was encouraged to formalise the programme by starting a charity but there was fierce
opposition from many doctors who were concerned about the potential accuracy of the tests, and fearful of being asked to refer young people through.

And then John Marshall died. On Caps Day. Aged 16. 10 days before he was due to get screened by Everton FC.

A handsome, popular, brilliant young player and athlete, John was a key member of the national junior football squad and had just been signed by Everton. His mother’s concern at what appeared to be his deteriorating fitness during the matches she watched had been dismissed as “a growth spurt” by the Football Association medical officer at Lilleshall, where the boys lived, trained, and went to school. The family learnt of our work and CRY was launched on BBC National News, with John’s mother Maureen giving an unforgettably moving interview.

Bereaved families found that having a community screening in memory of their child was very rewarding. This was funded by local events which not only raised money and media coverage, but also helped family and friends grieve. It meant that local people could begin to understand what had so suddenly killed the fit and healthy young person in their midst. Only the Italian doctors supported what we were doing. The Italians had instigated a national screening programme 15 years previously for any young person who represented their school, club or region and were my inspiration in my darkest moments. They were always baffled by the opposition we faced (and sometimes still do…!) from English doctors.

Screening fed research, and our big breakthrough came when Professor McKenna selected Sanjay Sharma as one of his research fellows. Sanjay began working closely with us, attending our screenings, quickly recognising common abnormalities and making progress in sports cardiology. Understanding the more challenging “athlete’s heart” facilitated the diagnosis of the hearts of less active, more physically normal, young people. The programme gathered momentum with Sanjay’s support, and when Steve joined us in 2001, he took the screening programme to another level. It was screening that had saved Steve. He had intended to have a career in tennis, and immediately responded to working in tandem with Sanjay to formalise the screening and research programme, which went from strength to strength and became a platform for critical, unique research.

I have found reminiscing to be unproductively hazardous and am cautious of indulging, but on reading our early Updates it is extraordinary to be reminded that since that first 1993 screening in the players’ hotel during the Nationals at Telford, we have now screened over 120,000 young people and saved hundreds of young lives. Our screening team used to be Annette and co., but now consists of eight administrators based at the CRY office as well as three screening event managers and three drivers. Our eight CRY Research Fellows share a rota so we have a doctor attending all screenings. They are based at St George’s Hospital in Tooting, taking clinics in the CRY Centre for Inherited Cardiovascular Conditions and Sports Cardiology. Parked outside our offices are the five CRY screening vans that facilitate the programme. Our medical team is drawn from the 100 physiologists that are currently working to full capacity.

Professor Sanjay Sharma has followed in his mentor’s footsteps and is himself now a highly regarded world expert with an international reputation. There is no better illustration of this than his
February 2017 screening recommendations, “the culmination of two decades of research”, published simultaneously in two international heart journals; the Journal of the American College of
Cardiology (JACC) and the European Heart Journal. Sanjay urges that, ”for the first time ever, our studies also now represent an international consensus”.

We are getting ever closer to our longtime ambition of developing a national programme, making screening available to every region in the country. Currently subsidised by CRY, it must now be
made sustainable so that we will have the funds to invest in more staff and CRY Research Fellows to maintain the steady expansion of the programme. We look forward to the time when young people will be including it as part of their health check, and asking each other “have you been screened yet?”

Alison Cox MBE