“This has been another incredible year for CRY,” said CRY Chairman Hugh Mulcahey at our 17th annual Parliamentary Reception in the House of Commons Terrace Pavilion. It’s the only way to describe 2018 after CRY’s developments in all key areas, from screening more young people than ever to publishing more impactful research.
“I believe this is why so much has been achieved – an incredible team, working closely with so many families to bring about change,” Hugh added. “CRY’s impressive achievements are down to a special combination of passion and effort from families, medical experts and above all, the CRY staff.”
CRY’s purpose, progress and ambitions were perfectly captured by a range of speakers. We were also thrilled to have the support of CRY Patrons (Lee Mears, Bill Neely, Andy Scott, Pat Jennings and Kathryn Harries) and CRY Ambassadors (Montana Brown, Ben Coleman, Ivan Thomas, Calum Haggett and Jade Moore) at the event.
Kevan Jones MP, the host of the event and a fantastic, long-time supporter of CRY, opened our speeches for the evening to talk about how far CRY has come over the last 17 years. “I always joke when the phone goes or I get an email from Alison [Cox] because I know something is going to be asked,” Kevan remarked. “You can never say no to Alison. But credit to her tenacity in those early days, and [CRY] has grown from strength to strength.”
We were also pleased to welcome Abby Lang, who has campaigned tirelessly to secure the signatures of all Scotland’s MPs on our MP pledge to establish a national strategy for the prevention of young sudden cardiac deaths. Labour Leader Jeremy Corbyn and Liberal Democrats Leader Sir Vince Cable were among the other MPs Abby landed backing from.
“My message tonight is be proactive in rallying political support,” Abby said. “As we gather here at the Houses of Parliament it is apt to quote iconic British Prime Minister Sir Winston Churchill, who remarked, ‘I like things to happen, and if they don’t happen, I like to make them happen.’ I collected names at MP surgeries, party conferences, and the Foreign Affairs Committee roadshow. Most importantly, not one of the MPs I approached refused to sign the CRY pledge.”
The difference that Abby has made is a testament to what can be achieved with such a bold approach.
Mims Davies MP, who was appointed as Minister for Sport and Civil Society in November 2018, followed and gave a passionate speech to emphasise how she will be working to help CRY in her new role.
“We have heard tonight that screening has been proven to work, and I think when the next review of the National Screening Committee comes together I will be absolutely pushing for the urgent need for systematic screening.”
To conclude, Mims added: “I will use every sinew that I have in this role to support families and friends and the youngsters who lose their loved ones and their friends – and I know that’s been a focus that this charity has had before about what that means to people – to try and make changes and see that we do not end up with so many families who could be in such a better place.”
Once again, CRY Consultant Cardiologist Professor Sanjay Sharma spoke about our development from a research standpoint and some of the key papers that were published this year. This included the paper led by Dr Aneil Malhotra – published in the New England Journal of Medicine and featured on BBC News – investigating the incidence and causes of young sudden cardiac death in adolescent UK footballers, and Dr Harshil Dhutia’s research into 24,000 young people tested through CRY’s screening programme.
“We found out that if we used the current NHS criteria that is relying on symptoms, we would have missed 80% of those people,” Professor Sharma said when discussing Dr Dhutia’s research. “And we worked out that if we had diagnosed someone, around 60 people would get some form of treatment apart from lifestyle advice, so it’s worth making a diagnosis.”
Finally, CRY Chief Executive Dr Steven Cox gave a powerful speech about what needs to be done to establish consistent policy and strategy for how the UK tackles the issue of young sudden cardiac death. Dr Cox mentioned the World Health Organization’s recent acknowledgement that when someone dies of SADS it should be recognised by official government statistics and inform policy as a result. However, this isn’t enough.
“We know defibrillators are good,” Dr Cox said. “They do save young lives. And of course, every young person should be taught how to do CPR – there is no question about that. And people do need to know about symptoms – there are sometimes symptoms and they need to know about that. These are a given, but these are all reactionary.
“We must accept they alone (CPR & defibrillators) will not prevent the majority of young sudden cardiac deaths. Most of these deaths will occur at rest, during sleep, usually with no symptoms. And that is when screening comes in. That is why screening is so important. We need an overriding strategy – that’s been spoken about tonight – so we can break the contradictions that we see in different policies that we have in the UK. An ECG is a powerful tool if you look at the NICE guidelines. If you go to the NHS choices website, it talks about an ECG for conditions like Wolff-Parkinson-White, long QT, cardiomyopathies, Brugada syndrome. The ECG is the core tool there to identify them, yet the National Screening Committee do not support these position statements.”
It’s not easy to change policy. But as our speakers expressed so well, CRY continues to increase awareness, screen more young people every year, and make an impact in the medical community with research. And with 29 MPs at this year’s Parliamentary Reception – a significant increase from 17 MPs in 2017 – and over 130 MPs on our pledge to save young lives, our support in parliament is only on the rise as well.
