Charity seeks MPs support to prevent young sudden cardiac death

This month marks a milestone in the history of CRY’s campaigning. On June 21, we revealed that the World Health Organisation (WHO) has finally released the new ICD 11 Code, acknowledging that when a young person dies of SADS (as well as all the other conditions that can cause sudden cardiac death in young people) this must be recognised and recorded by official statistics, feeding into and informing the decision process of key policy makers.

This monumental news coincided with our own announcement that the 100th MP had “signed up” to support our ongoing initiative #MPsupport4CRY.  Both of these breakthroughs in our campaigning activity come as speculation grows of an imminent review in the UK’s cardiac screening policy.

This achievement is due, not least, to the incredible efforts of Perthshire teenager, Abby Lang, to encourage MSPs & MPs to pledge their support for a National Strategy for the Prevention of Young Sudden Cardiac Death (YSCD) to help save young lives. In fact, her unrelenting hard work has led to all 59 of Scotland’s MPs signing up to the pledge.

In recognition of her outstanding lobbying work, 18-year-old Abby (Head Girl at Harris Academy in Dundee) was invited to deliver the “Time for Reflection” speech at the Scottish Parliament on June 19^th, talking on the subject of young sudden cardiac death.

And her efforts have not been lost on CRY’s supporters and the many hundreds of families who are part of our social media community, with over 14,000 “views” of her rousing speech within 24 hours of being posted on Facebook.

When we were first introduced to Abby, she told us she was moved to campaign on behalf of CRY after attending a cardiac screening at her school in memory of Peter McAvoy, a footballer from Dundee who tragically died of an undiagnosed heart condition in 2014 whilst on a soccer scholarship in America. He was aged just 22. She also wanted to play tribute to fellow Harris Academy pupil Yusef Abubaker, who died suddenly from an undiagnosed heart condition at the age of 12.

Abby explained to us: “As part of my Scottish Baccalaureate in Science Interdisciplinary Project, dedicated to researching young sudden cardiac death, I emailed MPs and invited them to sign CRY’s pledge to establish a national strategy.

“I explained to them the work CRY does and brought to their attention the shocking statistic that every week in the UK, 12 apparently fit and healthy young people, aged 35 and under, die from undiagnosed cardiac conditions. So, it feels amazing to have helped recruit over 100s MPs to sign the CRY pledge, including the Leader of the Labour Party, Jeremy Corbyn, Diane Abbot, Sir Vince Cable, Heidi Allen, Kirstene Hair, Conservative MP for Angus and the SNP Westminster Leader, Ian Blackford.”

So, as we continue in our mission to prevent YSCD, it remains of great concern to us that current UK policies are still contradictory, with guidelines based on inconsistent assessments of the incidence, methods of diagnosis and management of cardiac conditions in young people. That’s why cross-party support for a new national strategy is so crucial, ensuring that the guidelines and policies to prevent young sudden cardiac death are consistent. And, the first stage of such a strategy must be to correctly acknowledge the incidence of these deaths.

We know that government advisors continue to significantly under-report the number of sudden cardiac deaths (in people age 35 and under). This is leading to the UK National Screening Committee incorrectly advising the Government the risk of young sudden cardiac death is “tiny” and that “the overwhelming majority of heart attacks happen in elderly people.

As I’ve said before, “12 young people dying every WEEK is not a “tiny” issue (as was – in July 2015 - cruelly and inaccurately reported by the National Screening Committee). Sudden cardiac death is one of the most common causes of death in young people.

It is also important to highlight that in 80% of cases of young sudden cardiac death, there will have been no signs or symptoms, which is why we believe proactive screening is so vital. Indeed, through our pioneering screening programme, CRY now tests around 27,000 young people, aged 14-35, annually. Although screening will not identify all those at risk, in Italy, where screening is mandatory for all young people engaged in organised sport, the incidence of young sudden cardiac death has decreased by 90%.

On behalf of CRY I want to take this opportunity say a huge “thank you” to Abby for taking such a proactive interest in the work of CRY by helping to raise awareness of young sudden cardiac death amongst MPs, MSPs and their constituencies – as well as raising awareness of Abby’s work to all politicians via this dedicated portal.

What she’s achieved so far will making a huge impact in our campaign to prevent young sudden cardiac death and there’s little doubt that her tenacity has played a key role in encouraging parliamentarians to listen to and become involved in our cause.

But we still need more MPs to sign up to our campaign – the fight goes on to ensure that the need for a National Strategy for the Prevention of YSCD to help save young lives gets a fair hearing.

Please contact CRY without delay to add your name to the pledge #MPsupport4CRY & for more information on why a National Strategy is needed here.

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