Please sign the petition – support @CRY_UK

I’d like you to sign a petition. I know you’re probably always being asked to, so I’ll try to explain why I would really appreciate it if you’d take a moment to add your name to this one.

The petition backs CRY’s call for a national heart screening programme for young people. If it reaches 100,000 signatures, it would be considered for a debate in parliament. That would be a vital step forward.

My son, Tom, died in his sleep from an undiagnosed heart condition aged 14 in 2007.

In 2019, another young man, 31-year-old Nathan Bryan, also died in his sleep from an undiagnosed heart condition. What had changed in how the heart health of the younger generation was looked after in the 12 years between Tom’s death and Nathan’s? Nothing.

What has changed in the seven years since Nathan’s death? Nothing.

Nathan’s family have started the petition and you can read about them here. They’ve already gathered more than the 10,000 signatures needed to trigger a Government response, a response CRY’s Chief Executive, Steve Cox, has dismissed as “deeply disappointing.”

The Government’s reply, citing scientific advice, is based on a recommendation by the UK’s National Screening Committee (NSC) that dates back to 2019, the last time a review took place. The NSC said then that there was no case for a national heart screening programme for young people.

Anyone who’s read this blog before will know my view, that the NSC’s review of 2019 and, before that, of 2015, raised more questions than they answered. Evidence appeared to be ignored. The process of review, such as it was, appeared flawed, the outcome pre-determined.

CRY has carried out more than 347,000 heart screenings. The majority of these have been paid for by family fund’s like Tom and Claire’s, supported by people like you, putting your hands in your pockets and donating. We know from personal experience that lives have been saved.

Such a large number of screenings give CRY’s expert cardiologists access to an incredible trove of information. The figures show that one in every 300 people CRY screens will be found to have a potentially life-threatening cardiac condition. One in every 100 will have a condition that will require monitoring and could cause health problems later in life.

These are not numbers plucked from thin air. They are driven by data. How much more evidence is needed?

The Government’s response makes great play of the suggestion that heart screening can have a detrimental impact because you could have a false positive or a false negative. True, but the same can be said of any health screening programme and, in the case of heart screening, it’s clear that an awful lot more young people would still be walking around today had they been tested. They never stood a chance.

The case for screening has been evident for many years but young people have been abandoned. CRY say 12 young people lose their lives to an undiagnosed heart condition every week. That’s more than 10,500 deaths since Tom died. The vast majority could have been saved.

The petition calls for screening to be “undertaken with a review of family history and electrocardiogram (ECG) followed up where necessary with echocardiogram (heart scan).”

The Government’s response is not clear about what it defines as ‘screening’. An ECG? An echocardiogram? Both?  If both, what is the NSC’s evidence that “research showed that it was unclear whether available tests could accurately detect heart conditions in young people without symptoms …”? Is it seriously suggested that a combination of an ECG and an echocardiogram would fail to reveal the majority of undiagnosed conditions?

I suspect that the issue is really around the reliability of ECG’s. If so, here’s a final thought. One reading of the response is that ECG’s are so untrustworthy that they should be locked in a cupboard and used only as a last resort. Yet we know they’re used time and again in many different situations, ranging from ensuring someone is fit for a particular profession to being part of medical assessments.

When this 66-year-old chap went to have the dodgy discs in his back sorted last week, what did the medical team insist upon before they’d go ahead with the procedure? Yep, an ECG, to ensure that I was fit to be operated on.

One rule for the old, another for the young …

Please, please, sign the petition and help Nathan’s family obtain the 100,000 signatures needed.