Sudden Cardiac Death: Young People
Peter Swallow Excerpts(5 days, 22 hours ago)
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Greg Smith
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law, that was the moment of his death—and his heart stopped for the final time on 5 February, when life support was withdrawn.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.
Peter Swallow (Bracknell) (Lab)
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?
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.
NHS Corridor Care
Peter Swallow Excerpts(1 month, 4 weeks ago)
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Sarah Hall
I absolutely agree; the NHS system as a whole is very fragmented, and the lack of connectivity is a big issue. Social care is a core component and it needs to be a priority going forward.
Peter Swallow (Bracknell) (Lab)
Of course, we must fix the back door and help people get out of hospital quicker, but there is also a challenge at the front door, with too many people feeling that they need to go to secondary care for health treatment. Is it not so important that we fix the foundations of the NHS by having a shift to community treatment, so that fewer people feel that they have to go to a hospital in the first place?
Sarah Hall
I agree with my hon. Friend and will touch on that point in a second, using Warrington as an example.
I am pleased that our local trust has already taken steps and is rightly treating corridor care and waiting times as a priority, but there is more to do. That is why I have been working closely with our local NHS, Ministers, and Cheshire and Merseyside ICB to move beyond talking about the problem, and to start changing how urgent and emergency care works in Warrington. Together with our local trust, I have developed a three-part pragmatic plan to improve health services for our town.
Given the pressure on A&E and waiting times, the first priority is clear: a new urgent treatment centre for Warrington. In April, I was pleased to announce that proposals had moved forwards, with architects beginning the initial design work. Since then, the proposal has moved forward again, and detailed design and site survey work is now under way.
An urgent treatment centre in Warrington means that families would not have to travel out of borough for things like minor injuries, sprains, cuts, burns or infections, or for a child with a fever who needs checking over. Such conditions can still be serious, but they do not need the full resources of an emergency department set up for life-threatening situations like heart attacks, strokes and major trauma. An urgent treatment centre would help to free up space in A&E for the sickest patients and improve the experience for others by helping them to get the right care in the right place.
Easing pressure in A&E is the first step, but it is not the whole answer. Part 2 of my plan is about moving routine appointments, diagnostics and planned care into the community so that people can be treated closer to home, and the hospital can focus on the patients who need the most specialist care.
However, there is one issue that none of us can ignore, and that is the hospital itself. People back home know that we need a new hospital. They see it when they go to A&E and when they visit relatives in hospital, and staff feel it every day. Much of the site was built in a different century for a different population and a very different NHS. We urgently need a new hospital—there is absolutely no question about that.
Much to our deep disappointment, Warrington was never included in the previous Government’s so-called new hospital programme, despite warm words hinting to the contrary. That brings me on to the third part of my plan: modernising and replacing outdated hospital facilities, built in phases while vital services continue to run.
When I was elected, I said that I would be honest about the challenges before us. Yes, Warrington needs a new hospital, but it also needs a proper plan and funding behind it, not just empty promises. My approach is a pragmatic one: we must ease the immediate pressures today, build better services around the hospital tomorrow, and put Warrington in the strongest possible position for investment in the years ahead. That is what I am fighting for. I will keep challenging where challenge is needed, keep working with our local NHS where partnership is needed, and keep putting Warrington South first until we get this right, because my residents in their time of need and our excellent NHS staff deserve better.
Pathways Study: Puberty Suppression
Peter Swallow Excerpts(2 months, 2 weeks ago)
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James Murray
I thank the hon. Lady for her question, which highlights the importance we all place on making sure that vulnerable children are protected in the way that the trial proceeds. Perhaps I can offer her some detail which might reassure her by explaining who is on the national multidisciplinary team. As I mentioned earlier, the national multidisciplinary team will have to give permission for young people to be involved in the trial, as will the NHS care team. That national multidisciplinary team has an independent chair and its membership comprises senior clinicians from a range of clinical backgrounds: paediatric endocrinology, general paediatrics, child and adolescent mental health, clinical nursing, safeguarding, adolescent medicine, allied health and service leadership. Those are the specialisms represented in the national multidisciplinary team, which means that those aspects of the child’s wellbeing are all being considered in that process.
Peter Swallow (Bracknell) (Lab)
On a quiet day in Westminster, I have had a chance to dive into the Conservative party’s 2024 manifesto, which promised:
“We will complete the implementation of the Cass Review”.
A similar commitment appeared in our own manifesto, which we are now cracking on with and delivering. Does my right hon. Friend share my concerns that the Conservatives seem to have abandoned their commitment?
James Murray
I share my hon. Friend’s disappointment that the cross-party consensus that was in place about the way to approach the issue does not currently seem to be holding. I urge Opposition Members who are not aligned with that cross-party consensus to reconsider their position, because that is the best way forward for our country.
Oral Answers to Questions
Peter Swallow Excerpts(2 months, 4 weeks ago)
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James Murray
I am aware of the issues at Eastbourne district general hospital. Patients, staff and visitors deserve better than power cuts and electrical failures, which is why this Government have set out a credible and deliverable plan to deliver the new hospitals programme. I would gently remind the hon. Gentleman and his constituents that many of the problems that the NHS estate faces today stem from its being starved of £37 billion of capital investment in the 2010s, when the Lib Dems were in government.
Peter Swallow (Bracknell) (Lab)
The Minister for Secondary Care (Karin Smyth)
The single patient record will give clinicians timely access to a single trusted record so that decisions can be made more efficiently, avoiding duplication, allowing them to spend more time with patients. The system makes all information on a patient accessible in a single place and will allow the sharing of patient data among different settings, as my hon. Friend outlines, and provide more flexibility in where services are made available.
Sudden Unexpected Death in Epilepsy
Peter Swallow Excerpts(4 months, 2 weeks ago)
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Olly Glover (Didcot and Wantage) (LD)
In the United Kingdom, more than 600,000 people—one in a 100—live with epilepsy and every day around 80 people are diagnosed. Sudden unexpected death in epilepsy, abbreviated as SUDEP, is the term used when a person with epilepsy dies suddenly and unexpectedly. At least 21 people die every week in the UK from SUDEP, and even that is an underestimate, with epilepsy deaths believed to be under recorded. I will raise two key themes in this debate: first, the SUDEP and epilepsy risk communication and understanding gap, and secondly, the inherent systemic failure to prevent deaths following prevention of future deaths reports. I will conclude by outlining my key asks, which are needed for lasting and meaningful change.
The causes of epilepsy-related deaths range from prolonged seizures and accidents to drownings and suicide; however, SUDEP is a devastating worst outcome, accounting for half of all epilepsy fatalities. According to the charity SUDEP Action and the Epilepsy Research Institute UK, the highest rates of death are in areas of deprivation and among vulnerable groups, such as those with worsening mental health, people with learning disabilities or autism, pregnant women and children. SUDEP affects all ages, but we know that it disproportionately affects the young, with a peak in people’s 20s and 30s.
Peter Swallow (Bracknell) (Lab)
I am grateful to the hon. Gentleman for bringing this debate to the House tonight. I have been asked to come along on behalf of my constituent, James Nichols, who lost a dear friend in just that age group to SUDEP and has been a tireless campaigner on the issue ever since. He explained to me that the really tragic thing about SUDEP is that it can often come somewhat out of the blue through breakthrough seizures after an individual has not had seizures for many years, which can make it a particularly traumatic experience for loved ones and family members. Will the hon. Gentleman perhaps touch a bit more on what we can do to support family members?
Olly Glover
I thank the hon. Gentleman for his intervention and pay tribute to his constituent and their family. I am going to be talking quite a lot about what we can do to prevent such occurrences in the future.
Oral Answers to Questions
Peter Swallow Excerpts(4 months, 3 weeks ago)
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Stephen Kinnock
I am equally pleased about what is happening with the University of East Anglia. When we came into office in July 2024, I was shocked to discover that there had been no sustained increase in the number of dental places in our country since 2007, and I am very proud of the fact that this Government have turned that around.
With regard to the overseas registration examination, I had the General Dental Council in my office shortly after the general election to ask why the contract has been failing, and it is mainly due to the neglect and incompetence of the Conservative party. We have sorted that out. There is a new contractor in place, and we will be delivering thousands more out of the backlog of international dentists starting from 1 April this year.
Peter Swallow (Bracknell) (Lab)
The Minister for Care (Stephen Kinnock)
We promised to improve GP access, and we are delivering. There are 2,000 more GPs than in July 2024—double our manifesto commitment of 1,000. The previous Government planned to increase GP numbers. Between 2019 and 2024, the number of fully qualified full-time equivalent GPs actually fell by 900. We have delivered 8 million more appointments, and we have seen satisfaction go up from 61%, where it was languishing in July 2024, to 74% today.
Peter Swallow
I declare an interest: my brother is a GP. Many residents in Bracknell Forest find the best way to contact their GP is online or by phone, but others have told me that they want to be able to visit their local surgery and book an appointment in person. Can my hon. Friend confirm that the new GP contract guarantees that patients have the right to choose to contact their GP in the way that works best for them, whether by phone, online or in person?
Stephen Kinnock
My hon. Friend is a doughty champion for his constituents. I can absolutely give him that assurance. The GP contract is clear that patients must have the option of telephoning or visiting their practice in person, and online tools must be an addition to, rather than a replacement for, other contact methods. However, we have found that by expanding online access, we have significantly reduced pressure on phone lines, and we are ending the 8 am scramble.
Oral Answers to Questions
Peter Swallow Excerpts(6 months, 1 week ago)
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The Minister for Care (Stephen Kinnock)
On the subject of GP access, I am delighted that 75% of patients now say it is easy to contact their GP, which is a sizeable increase of 14 percentage points since July 2024—that is a really positive development that I am sure the hon. Lady welcomes. Turning to planning, it is very important that the integrated care board, the council and the developers are joined up together, and we need to ensure that happens. There is also the primary care utilisation and modernisation fund, which the hon. Lady’s constituents may be interested in.
Peter Swallow (Bracknell) (Lab)
Dr Ahmed
Mental health support teams provide innovative early support for children and young people in schools and colleges, and I am pleased that these are working well in Bracknell Forest, too. Up to 900,000 additional pupils will have access to that support by the spring, and we are accelerating the roll-out to reach full national coverage by 2029.
National Cancer Plan
Peter Swallow Excerpts(7 months ago)
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Ashley Dalton
Yes, I can confirm that, but it is not always about throwing extra money at things. It is about using the resources that we have in a better, more targeted way to be more impactful. I have worked with Cancer Research UK from day one of developing this plan and it has run right the way through it. We continue to work with the organisation as we move forward to make the plan a reality.
Peter Swallow (Bracknell) (Lab)
This week marks 17 years since my mum died of lung cancer. She was just 58, and I was just 15. Last week, when I visited a local lung cancer screening service in Bracknell and heard how it is using AI to speed up diagnosis, it was personal. Can the Minister say a bit more about what we are doing to roll out schemes such as that to make sure that more families like mine do not have to suffer the loss of a loved one to this terrible disease?
Ashley Dalton
I thank my hon. Friend for his question. Lung cancer has impacted on my family as well. Yes, we will be rolling out lung cancer screening nationwide by 2030, because we know that it has a huge impact on outcomes. I have seen how amazing the AI tools are at identifying discrepancies in lung CT scans. I found out that I had an untapped talent, as I was quite good at identifying those discrepancies as well. AI means that we can catch lung cancers sooner. They are often not caught until they are at stage 3 or 4. Using AI means that we can get them at stage 1 or 2, we can treat people early and we can save lives.
Puberty Suppressants Trial
Peter Swallow Excerpts(8 months, 2 weeks ago)
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Wes Streeting
The right hon. Member is right that we need that data linkage study. That will happen, but it will not produce the same evidence base as a clinical trial, and that is the distinction between the two. It is frankly a disgrace that people have sought to withhold that kind of data and it is really important that we get this right.
I appreciate the right hon. Member’s sympathy. I have wrestled with this issue probably more than any other ethical decision that I have had to make in this office. I do not seek any pity or sympathy for doing so—it is the job that I signed up to and a job that I love doing. I have taken great care and sensitivity in this area because of the particular vulnerability of this group of children and young people.
Peter Swallow (Bracknell) (Lab)
It is fair to say that the recommendations of the Cass review were not welcomed by everyone—not least by all members of the LGBT+ community—but the Conservative party commissioned the review and accepted its findings, and the Labour party supported the review and supported its findings. Does the Secretary of State share my concern that there are those who would now seek to cherry pick which of the findings they agree with and which they do not? Is it not the case that an independent review with such serious and important findings should be accepted in its entirety?
Wes Streeting
When it was published—I was in the Chamber at the time—there was an overwhelming consensus in the House. There were some people who criticised and challenged the Cass review at the time, including some outside the House in the LGBT community. I have always supported the Cass review, which was led by one of our country’s best paediatricians. Because of that, I am proceeding in the way that I am, which is the way that Dr Cass—now Baroness Cass—recommended. I will continue to follow the evidence and implement the Cass review comprehensively.
Oral Answers to Questions
Peter Swallow Excerpts(9 months, 1 week ago)
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Peter Swallow (Bracknell) (Lab)
Bracknell is a life sciences superpower, with Eli Lilly, Sandoz and Boehringer Ingelheim all having a footprint in our town. What can we do to speed up clinical trial set-up to help to deliver the next generation of treatments for our NHS?