Sudden Cardiac Death: Young People

Debate between Greg Smith and Julian Lewis

Tuesday 1st September 2026 Commons Chamber

[Greg Smith]

I am grateful to the hon. Gentleman. I agree with him on that point and I will come on to screening in one or two moments.

Families should not be left to act as their own caseworkers in the aftermath of grief. We need to review how genetic findings are communicated to all relatives, and how families can be properly supported in doing that work; we should not simply be told, as NHS England and the British Society for Genetic Medicine have both said so far, that a service specification is under review with no date attached.

The coroner also asked whether there is adequate sudden cardiac arrest training for coaches and referees at organised football matches. If young people are taking part in organised sport, those supervising them must know how to respond when something goes wrong. I welcome the fact that the Football Association is exploring improvements and that Adam’s parents have engaged constructively with that work, but this should not depend on a grieving family campaigning after a tragedy. It should be standard for every club, not just the accredited ones.

I am also concerned that the English Institute of Sport, Sport England and the Faculty of Sport and Exercise Medicine UK—all recipients of this prevention of future deaths report, and all in receipt of public or national lottery funding—did not respond to it at all. Public funding should carry a basic obligation to engage when a coroner writes to them about a child’s death.

Finally, I come on to the point made by the hon. Member for Bracknell (Peter Swallow) about screening, and here there is a specific, checkable gap. Cardiac Risk in the Young estimates that 12 apparently fit and healthy young people die of undiagnosed cardiac conditions every week in this country, with no prior symptoms in about 80% of cases. These are not abstract numbers; they are lost sons and daughters.

The UK National Screening Committee is currently consulting on the evidence, and the Government should be guided by that work. However, I have checked directly what that evidence map actually contains, and I want the House to hear this clearly. Its literature searches were conducted on 10 April 2025. On 24 February 2026, the Journal of the American College of Cardiology published the largest and most relevant UK study ever conducted on this exact question. With outcomes from over 104,000 young people screened by Cardiac Risk in the Young over a 10-year period, led by City St George’s, University of London, it had real-world data on what actually happened to people after a positive result, which is precisely the evidence the 2019 review said was missing. That study did not exist when the map’s searches were run, and I have confirmed directly against the published document that it is not in it. If anyone reaches tonight for the map’s citation of an unrelated 2022 cricket screening paper by a different MacLachlan study, I want it on the record now that that is not the same study.

So my question is direct: will the Government confirm that the evidence map has not considered the February 2026 JACC study, and commit tonight to its being formally included in the deliberations of the committee when it meets in November, rather than filed away for a further three-year wait, as the map’s own conclusion currently recommends? If the committee does not recommend population-wide screening, will the Minister commit to implementing the FIFA 2025 consensus statement, which recommends screening young footballers aged 12 to 18 as best practice? This is football’s home country and football is our national sport. We should be asking whether we do enough to protect the young people who play it.

[Sir Julian Lewis (New Forest East) (Con)]

My constituent Sue Carter lost her son Ryan, aged 25, to sudden arrhythmic death syndrome, and her friend Charlie Gradidge lost her brother, Danny, who had been a friend of Ryan’s when they were at scouts together. Had they been screened, both those relatives believe that their lost ones would still be alive. They now spend their time fundraising, £7,000 at a time, and they have done this three or four times to enable CRY to screen 100 youngsters and pick up people with irregularities. That is great work, but it ought not to be done by private individuals, ought it?

[Greg Smith]

I entirely agree with my right hon. Friend and commend his constituents’ wonderful fundraising, but his master point that it should not be left to individuals to have to fundraise for that is absolutely correct and well made.

To conclude, I have seven requests: first, that the CQC regularly assesses call handlers’ skill in recognising cardiac arrest and abnormal breathing; secondly, a fully independent review of NHS Pathways’ effectiveness and culture; thirdly, a correction to the record on which triage system was used, and how that error occurred in Adam’s case; fourthly, a dated review of how genetic findings are communicated to relatives, including funding—currently dependent on British Heart Foundation charity money—to embed genetic testing into coronial pathways; fifthly, proper consideration of the FIFA 2025 statement and the JACC study by the National Screening Committee before it reaches its conclusion in November; sixthly, a statutory duty requiring NHS hospitals in one devolved UK nation to co-operate with coronial inquests in another, so that no hospital anywhere in this United Kingdom can again refuse to disclose records relevant to a child’s death; and seventhly and simplest, a meeting between a Minister and Adam’s parents. The Football Association has already met this family, and I struggle to see why the Government cannot manage to do the same.

Adam’s family deserve answers, and they deserve action. Every organisation that responded to the coroner has been sympathetic, and I believe that sympathy is sincere, but sympathy did not bring Adam home and it will not stop the next 17-year-old collapsing on the next pitch this winter. What will stop it is somebody in Government saying, “This is mine to fix and here is the date.” Adam’s family have shown extraordinary patience throughout an inquest, a prevention of future deaths process, and now this debate. What they are asking for is not extraordinary: that the Government read the evidence, tell the truth about what their own agencies have and have not done, and commit—with dates—to ensuring that no other family buries a child because a system could not tell the difference between a boy fighting for breath and a boy breathing normally. I look forward to the Minister’s response.

Employment Rights Bill

Debate between Greg Smith and Julian Lewis

Report stage & 3rd reading
Wednesday 12th March 2025 Commons Chamber

[Greg Smith]

For the avoidance of all doubt and in all transparency, I declare all my entries in the Register of Members’ Financial Interests for all to look at. They are all there for anybody to see.

[Sir Julian Lewis (New Forest East) (Con)]

This argument about opting in and opting out of trade union levies goes back to at least the 1970s—probably beyond—when I remember arguing about it as an undergraduate. If there are to be levies that people have to opt out of, a defensible case can be made for them provided that the process of opting out is easy and advertised to every member. Does my hon. Friend know whether the Government propose to institute mechanisms to make it known to every member how easily they can opt out?

[Greg Smith]

My right hon. Friend makes an incredibly important point. If we look at the detail of this Bill, it is very clear and obvious that the Government are trying to make it as difficult as possible for people to opt out of the trade union political fund. That is the very point of them changing this legislation.