The parents whose son died after a sudden cardiac arrest have met a health minister and been promised steps to research the roll out of heart screening to those under 35. Nathan Bryan died at the age of just 31 from Sudden Adult Death Syndrome (SADS) in February 2019.
The condition is where someone has a sudden cardiac arrest without an obvious cause. The family's MP, Holly Mumby-Croft, recently led a debate on the topic in parliament on February 1 and as a result, a meeting was set up between health minister Neil O'Brien and Nathan's parents Stephen and Gill Ayling. Ms Mumby-Croft and Anne Mackie, director of screening for Public Health England (PHE), were also part of the meeting in London on Wednesday, March 8.
Nathan's parents have campaigned tirelessly for more heart screenings for young people. Despite four members of his family being affected by heart-related conditions, Nathan's mum Gill was told by doctors he would not need testing for similar conditions, GrimsbyLive reports.
On the morning Nathan died, he texted his mum saying he was excited to see her later on that day. But that was the last thing she heard from him.
Gill has previously said: "He was a happy, healthy person and was always weightlifting or walking his dog. We never thought that he had any underlying heart conditions."
Ms Mumby-Croft took up the cause after being contacted by Nathan's parents. Research suggests approximately 80 per cent of young people that die from sudden cardiac death do not show any prior symptoms.
"Residents might have seen that I lead a debate on cardiac death in the young and shared the story of Stephen and Gill Ayling, whose son, Nathan, died of an undiagnosed heart condition," wrote Ms Mumby-Croft in a Facebook post on Wednesday. "Today we had a follow up meeting with Health Minister, Neil O’Brien, and Anne Mackie, Director of Screening for Public Health England.
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"The meeting was constructive and we agreed on what we needed to do going forward. This is a step in the right direction to getting heart screening for young people who want it."
Stephen and Gill thanked Ms Mumby-Croft for the help and guidance. And it was agreed to look into more clinical research on the efficacy of heart screenings for those under 35.
The meeting covered the risks and benefits of screening, before a focus on the lack of data making it impossible for a sound decision on whether wider screening will be beneficial. It was accepted that current data on this is utterly outdated and inadequate.
Mr O'Brien suggested gathering new data as an intervening step to better inform whether to extend screening to younger people. There was talk of identifying and piggybacking on other data sources. But also the sharing of charity Cardiac Risk in the Young's (C-R-Y) data, and discussions to be had with the National Institute for Health and Care Research (NIHR) about funding future research.
PHE's Anne Mackie was asked by the health minister to commission a note on what well-designed reseach would be. Neil O'Brien said he would like to prioritise with the NIHR if it was "clinically do-able".
Ms Mackie was also to speak to several other stakeholders including cardiology expert Professor Sanjay Sharma and C-R-Y before reporting back to Mr O'Brien.
