Wednesday 29 November saw the inaugural ‘drop in’ session for Members of the Senedd as part of the new #MSsupport4CRY campaign, championed by Cllr. Jane Gebbie (Deputy Leader of Bridgend Borough Council) in memory of her grandson Justin who died suddenly and tragically from a heart condition in 2019, aged just 19.
The event – which was sponsored by Hannah Blythyn MS – included an inspiring and poignant panel of speakers, who talked guests through the work that Cardiac Risk in the Young (CRY) carries out across the UK to help prevent young sudden cardiac death (YSCD) as well as the importance of its cardiac screening programme, which currently provides testing for around 25-30,000 people aged between 14-35 every year.
And, since 2004, CRY has carried almost 100 days of heart screening across Wales, testing around 10,000 young people to date.
Joining Cllr. Gebbie (who opened the speeches with a very powerful and personal talk about the impact of a young sudden death on her own family and the wider, local community) was the charity’s Chief Executive, Dr Steven Cox and CRY supporter, Dan Mason (from Narbeth, South Wales). Dan first started campaigning and fundraising for CRY following the sudden death of his 26 year-old brother Dean from a previously undiagnosed heart condition, in 2010.
On the day, 10 MSs agreed to support CRY’s ‘parliamentary pledge’ and it’s hoped that many more will show their support by signing up to the campaign as it continues to generate further awareness across Wales.
Dr Steven Cox; comments; “Every week in the UK 12 fit and healthy young people aged 35 and under are dying suddenly from undiagnosed cardiac conditions. This campaign to establish a National Strategy for the Prevention of Young Sudden Cardiac Deaths was first launched with MPs to highlight how much more needs to be done to prevent young sudden deaths.
“We’ve had tremendous cross-party support which is an acknowledgement of the incredible efforts of all those raising awareness of what has happened to their family and what could have been done to prevent their loss.
“By launching this campaign in the Welsh Parliament, MSs are now being given an opportunity to show their support and recognition of the need for change, in order to save young lives. Many bereaved family members – such as Dan Mason, who joined us at this important launch event – have fought hard to raise awareness of young sudden cardiac death and brought heart screening to communities throughout Wales, testing thousands of young people.
“It was fantastic to have the opportunity to meet with so many MSs who all wanted to know more about our campaign and the impact CRY has already made in Wales. We were all in agreement that there’s still so much more to be done to raise greater awareness and to develop strategic policies to help prevent the tragedy of sudden cardiac deaths in young people.”
Cllr. Jane Gebbie and Dr Cox stood alongside MSs who attended the meeting, holding up the sign bearing the words “I pledge to help save young lives / Rwy’n addo I helpu I achub bywyndau ifanc”.
Speaking after the event, Cllr Gebbie said, “It was such an honour to host this event at the Senedd, in partnership with CRY and I was delighted by the response we received from many of my political colleagues. I really do feel encouraged by the support shown so far, and I look forward to working with MSs from across all parties, to see a new strategy put in place to deliver change and help save young lives, not least in calling for the roll out of national screening across Wales.”
Dan Mason adds; “Since the untimely death of my brother Dean, CRY has been a big part of my family’s lives. To lose someone extremely close to you in a way you didn’t realise possible – with them being apparently fit and healthy and having no symptoms – is just unthinkable until it happens to you.
“We as a family have supported CRY in the fantastic work they do, helping families through these circumstances, researching cardiac conditions, and running screening programmes to prevent this from happening in the first place.
“We have screened over 2000 people as a family, and I have seen first-hand from the screening events we have held within schools, colleges, and Universities how many lives have been saved by undiagnosed conditions being found and individuals having issues highlighted before it’s too late. In a lot of cases a simple treatment or regular monitoring it all that needs to be put in place to prevent a tragedy.
“Screening is invaluable and any national strategy we can develop would have a huge impact on preventing devastating events like we as a family have been through and continue to live with.
“The hard reality is that had my brother been screened, he would have stood a chance to watch his children grow up and remain a part of our lives. That’s why this recent awareness raising event held at the Senedd was so important. I was honoured to have been asked to attend and share my story, highlighting just how vital CRY’s work is.”
“I am extremely proud to be associated with CRY and will continue to champion their cause in preventing sudden cardiac death in young people”.
For anyone who would like to contact their MS to support this campaign go to www.c-r-y.org.uk/my-pledge-ms/ for more information.
Dr Cox concludes; “Once politicians begin to take young sudden cardiac death seriously we will move towards a time when every young person will have the opportunity to have their heart tested. The whole of the UK needs a comprehensive approach to stop these deaths. A national strategy is required to prevent young sudden cardiac deaths and it’s wonderful to see that there is already so much political support in Wales. We’re off to a great start.”
