Suffolk mum calls for routine heart screenings a year after son’s sudden death
Toby Chenery was just 23 when he passed away in his sleep 12 months ago from an undiagnosed health condition
Campaigners are continuing to push for a national heart screening programme for teenagers, as a petition calling for routine checks gains momentum.
For Jane Wilson and Trevor Chenery, from Halesworth, Suffolk, it started after their son Toby Chenery's unexpected death a year ago.
He passed away in his sleep in February 2025, at just 23-years-old, from an undiagnosed congenital heart condition, just hours after returning home from playing football
Since then, his parents, Trevor Chenery and Jane Wilson, from Halesworth, Suffolk, have made it their mission to help others detect potential heart problems sooner.
According to CRY, at least 12 young people die each week in the UK from undiagnosed heart conditions, often without prior symptoms.
Jane Wilson said efforts are focused on raising awareness of cardiac screening and the work of the charity Cardiac Risk in the Young (CRY), which raises awareness of conditions linked to sudden cardiac death in young people.
She said: “What we are trying to do at the moment is continue to raise as much awareness around screening as we possibly can, cardiac screening, and to raise more awareness about CRY.”
More about the petition
Wilson is supporting a national petition calling for all 14-year-olds to receive an electrocardiogram (ECG) and heart screening as part of routine healthcare.
The campaign was started by Jill and Steve Ayling in memory of their son Nathan, who died from a sudden cardiac condition.
Currently, there is no national screening programme in place. The UK National Screening Committee has previously said more evidence is needed before introducing population-wide screening.
Ms Wilson said she wants everyone to have the choice and opportunity to check their heart health with the same accessibility as vaccinations.
So far, the petition has gathered around 32,000 signatures, but it needs to reach 100,000 before it can be considered for debate in Parliament.
The number of people affected could be higher
She emphasised how the current research, showing "12 young people die each week in the UK from undiagnosed heart conditions, often without prior symptoms" could be inaccurate due to how long ago the research was done, and worries that the true number is actually higher.
"It's possible that it's closer to 16 or 20 times a week. 16-20 Young people losing their lives in an instant every week in this country; that is a huge figure.
"You're never going to be able to eradicate everything. You're never going to be able to find everything. Some conditions are hidden quite deeply in genetics. Some conditions progress over time.
"But if there's even a chance that an ECG on that day could tell you that there is something not quite right here, we need to investigate further, and that could save someone's life. We just don't understand why it's not happening."
Education and prevention
When asked why Wilson wanted these checks to be given to young people at 14-years-old she said "We feel, having lost Toby, why are we not doing this to young people, to give young people the opportunity to know a little bit about their heart health and that if there is anything there at that young age, it can be picked up very quickly, and changes in lifestyle can be introduced or medication or in some more severe cases, pacemakers or defibrillators can be fitted.
"It seems to us, it's a waste of resources to have all these cheques available to older people, and we feel that we should be doing it, you know, at a younger age"
"It's not a club that anybody wants to belong to"
Since Toby's passing 12 months ago, Wilson said she's become a member of some online groups with others who have lost a loved one in a similar way.
She told us more people join each week, and it's "heartbreaking."
"It's not a club that anybody wants to belong to, and to see new names and more recent dates than Toby's date appear every week. It breaks my heart because not only does it take you back to your own experience of losing your child, but it is the pain of understanding what that person is going through.
"And it hits you every single time. To me, it's almost like it's being allowed to happen, and that nobody is seriously looking at what possibilities there are, and what could be done to stop this from happening."
Continue to campaign
Campaigners have also been working with organisations to raise awareness, including Ipswich Town Football Club.
Ms Wilson said: “We had some support at the weekend from Ipswich Town Football Club who very kindly agreed to put the petition and the QR code in their match day programme.”
She added that wider support would be key to expanding the campaign’s reach.
“The ultimate thing would be for somebody to grab hold of this with a bigger platform than any of us have got… to really push it and to reach the amount of people that we can’t do on our own,” she said.
Ms Wilson said campaigners would continue their efforts regardless of the outcome.
She said: “We’ll just carry on doing what we’re doing… asking people to come on board and give us their support if they can.”