Assessing the impact: Committee rules no on UK cardiac screening program

More than 200 people died in house fires last year in the UK, according to Government figures. More than half of those who died were aged 65 or over.

So what does the Government do? It highlights the importance of smoke alarms and suggests that while checking their own alarms, people might like to check on those belonging to their elderly neighbours' too. Good stuff. Practical stuff. Proactive stuff.

Now what if the UK were losing not 200 but 600 young people a year to undiagnosed heart conditions. That's 12 young lives, aged 35 and under, lost every week of every year. You'd want to diagnose them; you'd want to do what you could to cut the death toll. Right?

Wrong.

What you'd actually do is nothing, nada, rien. Not only is there no equivalent of checking on the smoke alarm, there's not even a suggestion that you might like to have one in the first place.

That's the position the country finds itself in after the recommendation in July by the UK National Screening Committee following a review of Sudden Cardiac Death (SCD) among young people aged 12-39. No cardiac screening programme. The evidence wasn't strong enough. The data wasn't clear.

There'll be no further review until 2018/19. By which time, based on figures from the charity Cardiac Risk in the Young (CRY), nearly 2,000 more young people will have died, the vast majority when they need not have done.

CRY's figures are not plucked from thin air. The charity has carried out more than 70,000 screenings since 1995. Last year it carried out 17,000 screenings. This year – CRY’s 20th anniversary – it’s aiming for 20,000. CRY’s screening programme is led by a world renowned expert, Professor Sanjay Sharma, Professor of Cardiology at St George’s University of London and, among other roles, medical director for the London Marathon.

The data from all these screenings suggests that 1 in 300 will have a cardiac condition that needs immediate medical intervention; a further one in 100 will be shown to have a condition that will need managing at some point in their lives.

If CRY's figures aren't enough, look at Italy where it has been mandatory for more than 25 years for those taking part in organised sport to be screened. The Italians say they've cut the death rate by 89%. Or look at the paper written by Harmon, Zigman and Drezner earlier this year which posits a detection rate of 1 in 294 among an athlete cohort, extraordinarily close to CRY's figure of 1 in 300 among the general population.

The UK NSC recognise sudden cardiac death - something which all too frequently occurs with no previous symptoms - as “... an important health problem”. But after its first review of SCD among young people since 2008, it has chosen to recommend inaction.

I'm biased. I lost a 'healthy' 14-year-old son to an undiagnosed cardiac condition in 2007. I'm also a layman. I've no doubt the UK NSC did its job fairly and to its remit. But the only way I can understand its decision is to look at the documentation it's published online and that's left me with more questions than answers:

1. If CRY has shed-loads of UK screening data from the many tens of thousands of screenings it has conducted both before and after the key date of 2008 – and that this data includes the general UK population, not just athletes – was this considered? From what’s online, it’s not obvious.

2. If Harmon/Zigman/Drezner and CRY's incidence figures correlate so closely, doesn’t that rather suggest a case for screening? Isn’t that how the NHS is now supposed to operate, proactively, rather than reactively?¬¬¬¬

3. If a 2011 paper by Elston and Stein suggested an expected 196 SCDs per year among athletes while CRY suggest 600 a year among the general population, what’s the number we have to hit before testing is recommended? How many have to die when they need not?

4. The UK NSC review looked at global figures that appear to suggest a cost for one averted SCD of between US $69,000 and US $14.4m. Yet a quick Google search shows that South Devon NHS Healthcare priced  a 12-lead ECG (used in cardiac screening) for private and overseas visitors at £49 in financial year 2014/15. Wouldn’t it have been reasonable for a UK review to look at current UK, rather than global, costs?

5. A key UK NSC reason for not recommending a screening programme is that "There is no agreed treatment or care pathway for supporting those who have been identified as at risk of SCD.” That's cart before horse. Why is having no treatment plan a reason against screening?

6. Could it be that while the UK NSC review took a global view across three decades, a perfectly legitimate approach for a condition that does not respect borders, and found a miasma of different testing regimes and standards, it might instead have been more strictly mandated to concentrate on what we know and have found for ourselves right here in the UK and then considered to what degree this was supported by relevant international findings?

7. If new research evidence becomes available before 2018/19, will it be considered?”

The UK NSC has a clear remit to advise " ... ministers and the NHS in the 4 UK countries about all aspects of screening ...” Politicians have a clear duty to listen to such advice. They also have a clear duty to consider and question it. I hope they do.

Sports Minister, Tracey Crouch, a qualified Football Association coach, has already told parliament that she’ll be looking at screening programmes “in some detail in the forthcoming sports strategy.” Her remarks followed the death of 24-year-old Tonbridge Angels footballer Junior Dian in July.

Comments like that give hope. Doing nothing should not be an option. But, as of now, it's the one we as a nation appear to have decided upon.

The full length version of this article can be found here.