Government must create a national strategy to prevent young sudden cardiac deaths

It was very encouraging to welcome so many MPs to our event held at Portcullis House and to update them on the progress of our campaign. Many of the MPs talked about the impact young sudden cardiac deaths have had on their constituents and the communities they represent. Some had very personal stories of the devastating impact of these tragedies.

We continue to urge all MPs to help establish a national strategy for the prevention of young sudden cardiac death to ensure the government acts to prevent the hundreds of deaths of young people each year from these undiagnosed cardiac conditions.

CRY is so grateful to Kevan Jones for his ongoing support and efforts to raise our profile at a high level. Not all of his parliamentary colleagues will be aware of the fact that Kevan is driven by a personal link to our mission and first became involved with CRY in 2002 following the sudden death of the son of his friend, Jeff Morland. Levon was aged just 22 when he died from a condition known as Wolff-Parkinson White (WPW).

“Speaking just after our event, Kevan said; “Sudden cardiac death is a terrible tragedy to be inflicted upon any family, and one that can be prevented by giving every young person the opportunity to have their hearts tested.”

And, since then, he has inspired and ‘rallied’ bereaved families across the UK further, by asking an important question during PMQ referring to the need to implement cardiac screening in young people. Mrs May replied favourably, praising the work of the Cardiac Risk in the Young APPG and stating, ‘this in an important issue and we want to make sure that we get this right.’

However, overall, too many people remain unaware of the fact that every week in the UK, 12 apparently fit and healthy young people aged 35 and under die suddenly from an undiagnosed heart defect.

In 80% of these cases, there will have been no signs or symptoms until it is too late, which is why at CRY, we believe screening is so vitally important. Any person aged 14-35 can go to www.testmyheart.org.uk to book an appointment for a free heart screening which includes an ECG. CRY also provides the follow up ultrasound test on the same day. CRY now tests around 30,000 young people each year and well over 190,000 since the screening programme was launched in 1995.

As was highlighted in Kevan’s short address at PMQs on July 2^nd, our event was set against the controversial backdrop of the recent news that a revised consultation document from the National Screening Committee (NSC) is set to recommend ‘against’ screening for the risk of sudden cardiac death in the young.

I therefore must reiterate that whilst progress is being made to save young lives, this latest NSC consultation document is very disappointing.

It FAILS to demonstrate the impact of young sudden cardiac deaths on our society and does not objectively evaluate the overlap between the current routine use of the ECG in the NHS / medical practice for general diagnostics and monitoring, and its role in cardiac screening. Furthermore, it FAILS to stress that 1 in 300 people screened have a cardiac condition that can benefit from treatment or lifestyle advice.

 As a progressive society it cannot be acceptable that WE FAIL to act in response to the horrendous impact these conditions have on the family, friends and fabric of our local communities when left undiagnosed.

The number of MPs who have now signed a pledge to support a national strategy to prevent sudden cardiac death (#MPSupport4CRY) stands at 174.

CRY will be providing an official response before the deadline of 7th September 2019.

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