PARLIAMENTARY DEBATE
Sudden Cardiac Death: Young People - 1 September 2026 (Commons/Commons Chamber)

I have initiated this Adjournment debate on behalf of my late constituent and his family. It concerns a tragic case that raises serious questions about emergency response, clinical training, information sharing, and whether the systems meant to save young lives are fit for purpose.

On 31 January 2024, Adam Ankers, aged just 17, collapsed while playing football for the Wycombe Wanderers Foundation’s under-19 development team. He was a much-loved son, brother, friend and team-mate. He dreamed of a career in professional football, and on the captain’s armband that he was wearing that day he had written the words “strength, inspiration, leader, desire.” Despite the presence of first-aid-trained coaches, despite a defibrillator being brought straight to the pitch, and despite multiple calls to 999, no one recognised that Adam was in sudden cardiac arrest. No cardiopulmonary resuscitation was started.

The coroner found that Adam’s brain had been was starved of oxygen for about eight minutes because no one had attempted CPR, and heard evidence that for every minute without CPR, the chances of survival decrease by 10%. South Central Ambulance Service’s serious incident review reached the same conclusion independently, acknowledging an eight-minute period in which CPR should have started and did not. The ambulance arrived within 11 minutes of the first 999 call, at 2.31 pm, but by then the critical window in which to act, having been led by telephone, had already been missed.

The hon. Member has raised a heart-rending and very difficult case, and I congratulate him on that.

The British Heart Foundation estimates that in Northern Ireland one person under the age of 35 dies every month from an undiagnosed heart condition. In view of that, does the hon. Member agree that more must be done to ensure that the public are equipped to perform effective CPR and to use a defibrillator, and are confident about carrying out bystander CPR?

I do agree with the hon. Gentleman, and I will explore many of those issues later in my speech.

When paramedics arrived, they found Adam cold, blue, not breathing, and without a pulse. They immediately started CPR, and took him to Harefield hospital, with the support of Thames Valley Air Ambulance. Despite the best efforts of clinicians, Adam was declared brain-stem dead on 4 February—in law, that was the moment of his death—and his heart stopped for the final time on 5 February, when life support was withdrawn. His parents, Alastair Ankers and Naomi Wakefield, both work in healthcare. Through devastating experience, they came to the conclusion that Adam’s death could have been prevented.

Adam’s parents fought for more than two years for a proper, in-depth inquest, rather than the four-hour online hearing first offered. They were represented by a single barrister, paid for by remortgaging their house, against an array of solicitors and counsel for the NHS bodies and the Football Association. That is not a fair fight. The underlying condition was arrhythmogenic right ventricular cardiomyopathy—ARVC, a genetic heart disease, the first sign of which can be sudden cardiac arrest. This was a failure to identify a life-threatening emergency in real time, and it is why recognition, escalation and response matter so much.

The inquest raised serious concerns about the handling of 999 calls and the ability of call handlers to recognise abnormal breathing and cardiac arrest. Ambulance services in England use one of two systems: MPDS—the medical priority dispatch system—and NHS Pathways. NHS Pathways is used by just over half of 999 services and by all 111 services in England, and it was the system used on the call that day. The inquest heard expert evidence from paramedic David Davis—not the one of this parish—who told the court,

“I am unable to say that NHS Pathways as is currently configured can always properly support members of the public to identify agonal or ineffective breathing. I am also uncertain as to whether NHS Pathways can adequately identify potential out-of-hospital cardiac arrest where there is seizure-like activity at the outset.”

That is about as serious a warning as an expert witness can give. If the system cannot reliably recognise the signs of cardiac arrest, people are being put in danger, and if the public are left uncertain about whether to follow the advice they are given or to act on instinct, that is a public safety problem.

The coroner issued a five-point prevention of future deaths report on 16 April this year. It was addressed to 13 bodies, including NHS England, the Department of Health and Social Care, the Football Association, South Central Ambulance Service, the UK National Screening Committee and Cardiac Risk in the Young. Responses were due by 11 June. There is a pattern in those responses: every organisation expressed sympathy and described some work under way, but almost none attached a date to anything. NHS England says that a genetic service specification is “currently being revised”, but with no timetable. Staff at Resuscitation Council UK say that responsibility sits with NHS England and the Department of Health and Social Care, not them. The Association of Ambulance Chief Executives says that it is

“not constituted to mandate or instruct ambulance services”.

Everybody has pointed to somebody else, and there have been warnings for years about call handlers and cardiac arrest, sepsis and other conditions, with no clear public evidence of improvement. Why?

I therefore ask the Minister to instruct the Care Quality Commission to urgently and regularly assess ambulance services on call-handler skill in detecting and managing abnormal breathing and suspected cardiac arrest. A CQC inspection of South Central Ambulance Service before Adam’s death had already found call handlers struggling to recognise abnormal breathing, with serious incidents leading to patient harm as a result—this is not new information to the trust. South Central Ambulance Service’s own response to the coroner’s report suggests that the public should understand that call handlers follow a fixed script, and that callers may need to act independently of the advice given. If it is genuinely the Government’s position that people in the worst moment of their life should second-guess the emergency services, the public deserve to hear that plainly, not discover it buried in a filing after a child has died.

Training alone will not be enough. NHS Pathways plays a central role in how millions of emergency and urgent care calls are handled every year, yet there is strikingly little publicly available data on its safety and effectiveness. That is not good enough. Will the Minister commit to a fully independent review of the effectiveness and the culture of NHS Pathways—not simply a restatement that the National Clinical Assurance Group already provides oversight? That body assures the clinical safety of dispositions; it does not examine culture. Its terms of reference are set by NHS England and it reports to NHS England, which is the body that runs NHS Pathways.

I want to press further on one other point, because it speaks to whether the Government can even get the basic facts right in responding to a dead child’s inquest. NHS England’s own prevention of future death response states that Adam was triaged through “Protocol 12, Convulsions/Fitting”—an MPDS reference. However, the coroner’s findings state that NHS Pathways, a different system owned and run by NHS England itself, was used as the script for that call. Why did NHS England’s response point to the wrong system entirely, rather than confront the failings of the system it actually runs? Did national leadership check its own response against the coroner’s findings before sending it? Will it now formally correct the record and explain how that error ever happened?

Moving on, there is the question of how genetic risk is communicated within families. Distant relatives in Scotland had known since 2018 that a genetic variant, PKP2, which is associated with ARVC, ran in the family, but that was not passed to Adam’s immediate family in full until after his death, and only then because Adam’s parents themselves had to go back to that distant relative and ask directly whether there was a letter he had not shared. There was. Once the risk was confirmed, the genetic service’s answer for cascading that information further to the wider family was a brown paper envelope containing 10 photocopied letters, which the family were left to hand round themselves—a grieving family doing the NHS’s job of tracing and warning their own relatives, with no support offered.

Adam’s grandmother had, in fact, raised the family history with her cardiologist at Papworth hospital, who accepted that it was recorded in three places in her notes but said he had not seen it. A 2022 referral from the GP was read by this doctor but never followed up due to an administrative error. Separately, NHS Greater Glasgow and Clyde, which held the original genetic records, refused to disclose them to the English coroner’s inquest as it fell outside its jurisdiction. The coroner considered applying to the Scottish High Court to compel co-operation, but decided against as it was not a proportionate use of public funds. No family should be told that it is not proportionate to pursue the truth about their son’s death across a devolved border. I ask the Minister to raise this issue with counterparts in the devolved health systems, so that no hospital anywhere in this United Kingdom refuses to co-operate with an inquest into a child’s death ever again.

The hon. Gentleman is making an incredibly powerful case. The tragic case of Adam will be felt across the country, including by my constituents in Sandhurst where we remember the tragic death of Lewis Marsh in not dissimilar circumstances while he was taking part in a sporting activity. The hon. Gentleman will be aware that screening is available for young people who might be at risk of cardiac death. I pay tribute to the work of the charity Cardiac Risk in the Young. Does he agree that we should see more of that rolled out, so that young people, in particular those who might be at a heightened risk, have screening made available so that they know they face that risk?

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.

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?

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.

I am conscious that another Member has risen, but we have only 10 minutes left. The hon. Lady might prefer to confine her comments to an intervention on the Minister in the interests of time.

I am honoured to be standing at the Dispatch Box as the new Minister for Health Innovation. Let me start by thanking NHS staff for their heroic shifts over the summer months. I also thank the hon. Member for Mid Buckinghamshire (Greg Smith) for bringing this debate forward and speaking with such deep conviction. I am humbled that this is the subject of my first outing in this new role, and I thank him and other Members for their work in this important area. I know that the hon. Gentleman, through his work on the APPG, already met a previous Minister, my hon. Friend the Member for Washington and Gateshead South (Mrs Hodgson), in July.

Reading about it and then listening to the hon. Gentleman’s account again in this debate, we agree that Adam’s death was an absolute tragedy. As a dad, I cannot begin to imagine what Adam’s mum and dad continue to go through, and I pay tribute to them. It goes without saying that I would of course be happy to meet with the hon. Gentleman and Adam’s parents to discuss what more we can do to change the system, to go through the seven requests in detail, and to help save other parents from the same heartbreaking loss that they have endured.

I am determined that the benefits of innovation are felt first and fastest by patients and families, as quickly and safely as possible. That means accelerating the adoption of technology, digital services and the Government’s single patient record, and better integration between our national platforms, so that relevant information about known conditions, family associations and medical history can follow the person across services, professionals and organisations.

In January 2023, Mia Jennings died suddenly from a cardiac event. She was a swimming instructor, star apprentice, and, by all accounts, a wonderful young lady. Since her passing, her family have made incredible efforts to raise money for CRY—over £50,000—bringing screening directly to communities across Macclesfield. Will the Minister join me in commending Mia’s family for their extraordinary efforts in her memory?

I never fail to be impressed by the sheer determination of humans who have endured the worst of losses to turn such loss into a positive contribution. Without hesitation, I pay tribute to Mia’s family for their fundraising efforts.

Done properly, innovation can support more joined-up care and personalised services, and faster sharing and implementation of new guidance and learning.

Let me now turn to some of the specific points raised by the hon. Member for Mid Buckinghamshire. NHS England has made changes to the call script in response to new advice from Resuscitation Council UK, issued in November 2023. That advice was given just two months before Adam’s death. It is tragic that it had not yet come into force by the time that Adam stepped on to that pitch. As healthcare professionals, Adam’s mum and dad will know that those changes would have given him a much better chance of survival, as callers now receive advice to begin life support, as well as the certainty of using a defibrillator on a teenager.

The hon. Gentleman raised a number of important points about the NHS pathways system. The challenge we face in improving the sensitivity of cardiac arrest identification is to do so in a way that does not generate false positives. Ongoing performance monitoring of NHS pathways finds that the system accepts over-triage; this is an intentional safety feature of triage systems. As the hon. Gentleman knows, at a time when many ambulance services are under such significant strain, the management of stretched resources is paramount.

The hon. Gentleman is right in saying that NHS England works with the NHS pathways clinical team, ambulance services and specialist organisations, including Resuscitation Council UK, to review data and emerging evidence and to see where we can do better.

I am grateful for the opportunity to intervene during this important debate. This is an issue that I care about deeply, both because of the impact on young people in Barrow and Furness, and because I have the privilege of serving as chair for the APPG on cardiac risk in the young. I came to be chair of the APPG after learning about the tragic loss of two Barrow and Furness residents, Wilson Shepherd and Vicky Parker. Wilson and Vicky died only two weeks apart and a few miles away from each other in 2023, and both deaths should have been preventable. I pay tribute to their mums, Lesley Mease and Donna Parker, for their tireless campaigning. Will the Government commit to developing a national strategy for the prevention of sudden cardiac death in young people in places like Barrow and Furness and across the country, bringing together screening with experts on cardiac pathology and inherited cardiac conditions and on the identification and investigation of blackouts?

I thank my hon. Friend for her intervention. I would be very happy to discuss those requests in person. I also pay tribute to the families of Wilson and Vicky. The impact of more and more defibs being available is incredibly important, and I am very happy to speak in more detail on that issue.

In the summer, I went to Glenfield hospital to talk to staff about the amazing genetic testing done there. Something that strikes me through all the conversations I have had as the former chair of the APPG is how much work could be done in A&E to strengthen that pathway. What can the Minister tell us about looking at ECGs after people have been tested in A&E, which could go back to cardiologists?

I thank my hon. Friend for her intervention; I hope I will cover and do justice to those important points.

NHS pathways also give providers call-level CPR data to support local reviews and improve quality, as well as reviewing data and emerging evidence to see where we must do better. They send quarterly reports to the national clinical assurance group, which is made up of senior clinicians drawn from royal colleges, professional bodies and urgent and emergency care services. These professionals can and often do submit constructive feedback on the way that pathways are run.

At present, NHS clinical staff are trained in CPR, but from April 2027, this will be extended to all NHS staff, including those in A&E. The roll-out of this training will take time, but it will hugely increase the number of people in the country with valuable lifesaving knowledge.

Finally, when it comes to recognising cardiac arrest, I can confirm that the Care Quality Commission does assess call handlers’ skill as part of its inspections. We know that no human system is perfect, and I am all too aware that a list or accounts like this can risk sounding defensive, so let me repeat my openness to sitting with the hon. Member for Mid Buckinghamshire, Adam’s parents and other colleagues to see how and where we can do better and go further.

Turning to the hon. Member’s points about genetics, I am hugely optimistic about the potential of genomics and life sciences over the next 10 years. The NHS clinical genetics services deliver a comprehensive clinical genetics and genetic counselling service for individuals with a family history of genetic conditions, including cardiac conditions. They provide a detailed review of family history that can direct the diagnosis, risk assessment and lifelong clinical management of patients of all ages and their families who have, or are at risk of having, a genomic condition.

The current specification for the clinical genetics services was published more than a decade go under the previous Government and is no longer fit for purpose, not least because this is one of the most innovative fields in healthcare. Today, specialist clinical services simply do not have the capacity or infrastructure to contact family members proactively, except where a particularly high risk has already been identified. For me and my work, it is a clear example of why innovation must help connect our public services.

NHS England’s genomics programme, working with the genomics clinical reference group, has done a review of the 17 regional NHS clinical genetics services. This has shone a light on the challenges to be addressed for this service to match the Government’s expectations.

I am unable to confirm a specific date for the hon. Member for Mid Buckinghamshire, but suffice to say, there is much more to be done before expectations are met by service. On his point about the UK National Screening Committee, it is true that the draft recommendations, which have been consulted on, did not find that the current scientific evidence—

Order.