(1 day, 16 hours ago)
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Chris Vince (Harlow) (Lab/Co-op)
I thank the Speaker’s Office for finding time for this important Adjournment debate, and my hon. Friend the Minister for being in her place to hear it. I look forward to her response. I know that many Members feel passionate about this issue and look forward to taking as many interventions as I can.
There have been plenty of high-profile examples of sudden cardiac arrest in young people, but I want to speak about a case brought to my attention by one of my constituents, Maureen, who was the aunt of Clarissa Nicholls. Clarissa was studying French and Italian at the University of Cambridge. She was a keen runner and hockey player. Just days before her 21st birthday in May 2023, she collapsed and died while hiking in France with friends. It was later found that she had an undiagnosed life-threatening condition: arrhythmogenic cardiomyopathy. In June 2024, Clarissa was posthumously awarded a first-class honours degree from the University of Cambridge.
I have had the honour of meeting Clarissa’s mum Hilary, both privately and at a recent event in Westminster held by the Cardiac Risk in the Young campaign. I thank my hon. Friend the Member for North West Leicestershire (Amanda Hack) for organising that event. Hilary said:
“Despite a journey cut tragically short we want to celebrate her achievements alongside her cohort, as it should have been. We know that we would have been very proud of her today and we remain proud of her dedication, determination and resilience as she set out to be the very best she could be.”
Fleur Anderson (Putney) (Lab)
I congratulate my hon. Friend on securing this debate. I have also met Hilary, Clarissa’s mum, and heard about her death and the fact that a simple electrocardiogram test can save lives. It is chilling to think that my daughters could face this. Does my hon. Friend agree that it is shocking that exercise can triple the risk of sudden cardiac death, but 80% of cases show no symptoms at all? The Government could act now to issue clear guidance, as we have done on concussion, and encourage and enable more young people to have the simple test that could save so many lives.
Chris Vince
I do agree with my hon. Friend. Clarissa was a young girl who was very involved in sport. There is no reason why young people with these conditions cannot continue to take part in sport, as long as they are aware of their condition and able to take the necessary precautions.
Hilary said that her daughter
“put everything into her studies, the friends she made here and the staff that supported her along the way including while she was on her year abroad. We are grateful for the happy times she clearly took away with her to the next life.”
When I applied for and secured this Adjournment debate, what really struck me was the number of people who came up to me and shared their personal experiences. In fact, only this morning, two Doorkeepers shared their experiences of this condition. I pay tribute to one of those Doorkeepers, Kieron, whose son Connor—who was born on 13 January 1994—died in 1995 at only 14 months old. When the post-mortem was conducted, it was found that he died of sudden cardiac death through a thickening of a heart muscle. That was over 30 years ago, but I know from talking to Kieron the huge impact it has had on his life; he will always carry that loss with him. It is important that we recognise how long we have been aware of these issues, and that it is time to talk about what action we can take.
This morning, I was in my constituency of Harlow, talking to one of our headteachers, Vic Goddard, who is the head of the Passmores co-operative learning community. He spoke about a young boy dying of cardiac arrest during his time as a PE teacher, and feeling so strongly that every school he works in should have a defibrillator. Again, having spoken to some of the staff in this place, I want to emphasise the huge difference that access to a defib can make to survival chances.
Jim Shannon (Strangford) (DUP)
I commend the hon. Gentleman for securing this debate. In the time he has been in this House, he has proven himself to be assiduous, committed and a hard-working constituency MP; I think every one of us is impressed by his efforts in this Chamber and in Westminster Hall, and we thank him for that. Today, he has done his constituents proud, and his constituents should be proud of him, including for how he has presented his case. Well done him.
The British Heart Foundation in Northern Ireland and similar groups have noted that undetected and inherited heart conditions can lead to sudden deaths in young people. That charity has estimated that one person aged under 35 dies every month in Northern Ireland from an undiagnosed heart condition. Does the hon. Member agree that there must be early intervention through screening for heart conditions that could be inherited genetically, to ensure they can be detected and treated earlier? The reason I am supporting the hon. Gentleman is that a young constituent of mine died in the same way he has described. For them and for Strangford, I put forward their case.
Chris Vince
I thank the hon. Gentleman for his intervention and his kind words. He has intervened at the perfect time, because I was just going to go through some of the statistics. Twelve people aged between 14 and 35 die each week in the UK—which obviously includes Northern Ireland—from an undiagnosed heart condition, and as my hon. Friend the Member for Putney (Fleur Anderson) mentioned, 80% of those people show no symptoms, meaning that the first sign is often sudden cardiac arrest. Elite athletes are screened by mandate, but amateur and grassroots athletes are not, despite their facing some of the same exercise-related risks. The NHS currently screens families only after a sudden cardiac death, so Hilary and her family were screened for the condition that took away her daughter’s life, but obviously that is too late for prevention.
Richard Foord (Honiton and Sidmouth) (LD)
On the hon. Gentleman’s point about elite athletes being screened, in September I went to Sidmouth college, which was hosting the very elite Exeter Chiefs rugby team. They were being screened alongside pupils from Sidmouth college because of the great work of Marion Hayman, whose son died aged 27 from a sudden cardiac arrest that came out of absolutely nowhere. Does the hon. Gentleman share my view that screening young people can save many, many lives, and that setting up memorial funds in the way Marion did for her son Jonathan can enable us to save more of those lives?
Chris Vince
I absolutely agree with the hon. Gentleman. I know of the funding Hilary was able to raise in memory of her daughter Clarissa to do just that, and of the work that Kieron did in the name of his son Connor to raise funds for exactly that purpose. I will come on to some of my recommendations and key asks in a moment, but what the hon. Gentleman has described is one of them, so I thank him for his intervention.
As I said, the NHS screens families only after a sudden cardiac death. It screens young people with symptoms, but many active young people are dismissed without tests because they do not show those symptoms. There are currently no screening pathways for asymptomatic young people, who make up the majority of those in risk. The National Screening Committee previously rejected screening, but I believe it is now reviewing a targeted programme for amateur athletics.
Finally, I come to some of the key asks.
Brian Leishman (Alloa and Grangemouth) (Lab)
I pay tribute to my hon. Friend for securing this important debate; as the hon. Member for Strangford (Jim Shannon) said, he is an absolutely fantastic representative for his constituents. Will he join me in thanking the family of Aiden Joyce from Clackmannanshire? Aiden was a serving police officer and a keen sportsman, and he tragically passed away in 2023 from an undiagnosed coronary artery anomaly. His family set up a memorial fund that funds the screening of young people in Clackmannanshire at Alva academy, a local secondary school. There is absolutely no doubt that it has been crucial in saving tens of lives.
Chris Vince
I absolutely pay tribute to my hon. Friend’s constituent and the work that has been done in memoriam, which is hugely important. I thank my hon. Friend for raising it. His intervention goes to show the number of lives that have been affected in this way.
My first key ask is a national NHS screening pathway for active young people, beginning with amateur and grassroots athletes. My second ask is routine ECG screening for all 14 to 18-year-olds at least twice, ensuring early detection before symptoms occur. My third ask is equitable access, so that screening is not limited to those who can pay for it privately. My fourth ask is that we use emerging evidence, including the forthcoming large-scale audit, to update NSC guidance and remove outdated barriers. My fifth ask is that we prioritise prevention by recognising the decades of life lost per young person and the long-term economic and societal impact.
Phil Brickell (Bolton West) (Lab)
My hon. Friend is making a powerful speech and giving an extensive list of recommendations to the Government. He talked earlier about defibrillators. There is an important point about access to defibrillators and where they are sited in constituencies. Does he agree that it is also important to ensure that those who need to use defibrillators have the training, knowledge and skillset to confidently do so in a safe manner?
Chris Vince
I absolutely agree with my hon. Friend. When I was a councillor in Harlow, I did a lot of work with my colleague James Griggs, who is now the leader of the Labour group on the council, to push for more defibrillators across Harlow, particularly in public places. Being confident and knowing how to use them are equally important.
I have tried not to get too emotional during this speech, and I might fail in a moment. When I was at uni, a friend of mine, Jude, died when she was only 18 years old—not because of cardiac arrest, but for completely different reasons. I think about all the things that I have done since I was 18. People say that life begins at 40. I do not know about that, but certainly from the slightly—believe it or not—geeky 18-year-old I was to the 42-year-old MP standing here, my life has changed a great deal, and very much for the better. It really saddens me that Jude never got to experience growing up, having a family and having that experience. It also saddens me to think of the many young people, like Clarissa and others, who hon. Members from across the House have mentioned.
John Slinger (Rugby) (Lab)
My hon. Friend is making a moving and powerful speech about the tragic loss of young lives—all the years that are lost of their lives, their families and so on, and all the suffering that happens when people die so young. I, too, lost a friend whom I met while we were studying master’s degrees at University College at Durham University in 2001. He died in 2012 of an undiagnosed heart condition, and he is a much-loved and missed son, husband, father and dear friend of mine. Does my hon. Friend agree that the huge loss that families and friends feel should inspire us all to seek as much effort as possible from the Government, from scientists and from medics to prevent these often avoidable situations? I continue my life with him in my memory, and I am inspired by everything that Michael McCarthy did and by our friendship. I miss him dearly.
Chris Vince
I thank my hon. Friend for his powerful testimony and his tribute to his friend Michael. I do not think I could have put it any better.
To finish, we are all aware of the challenges that the NHS, the Department and the Minister and her team face. I recognise that I have made a lot of asks this evening, and I suppose my overall ask to the Minister is to please consider the things that have been said today and to do what she can to tackle this issue. It is hugely important to so many and every young life that is lost is a tragedy in itself. Along with that person losing their life, there is a family who are devastated and friends who are equally devastated.
Amanda Hack (North West Leicestershire) (Lab)
I thank my hon. Friend the Member for Harlow (Chris Vince) for securing this important debate and for speaking so passionately about the issue at hand. As a reminder, 12 young, fit, healthy young people a week die of an unknown heart condition. That means that by the time we get to Christmas, 20 young people will have lost their lives. By this time next year, it will be 600 people. All of those deaths could have been prevented.
I first became aware of the scale of this tragedy when I bumped into an old school friend for his 40th birthday. He was fundraising for the brilliant Cardiac Risk in the Young, or CRY. Unbeknown to me, he had lost his brother to a sudden cardiac arrest when we were just in our teens. The second time I came across CRY, it was much closer to home. My niece’s boyfriend sadly passed away in his sleep three years ago. He was fit and healthy, having gone on a run earlier that day. His mother Lesley and my niece Izzy have been steadfast in their campaigning for CRY ever since.
What is CRY all about? It does vital work in raising awareness, supporting bereaved families and, most importantly, screening young people. CRY offers electrocardiogram screenings to all young people between the ages of 14 and 35. To date, it has screened more than 340,000 young people since its formation 30 years ago. I was lucky enough to see one of its screening days first hand at Cambridge University sports centre, organised by Hilary Nicholls, who has already been mentioned this evening, in memory of her daughter Clarissa, who passed away aged just 20 while hiking in France.
CRY is calling for the National Screening Committee urgently to review and reconsider evidence supporting the roll-out of a national screening programme, and for a national screening strategy for the prevention of young sudden cardiac death. I would welcome the Minister’s comments on that. When a similar programme was introduced in Italy in the 1980s, it saw a reduction in young people dying of 85%.
Over the past year, I have been speaking to national sporting bodies alongside my hon. Friend the Member for Beckenham and Penge (Liam Conlon) to identify which were already screening their players and how they do it, as well as meeting organisations that represent sports facilities. Just the other week, we heard the excellent news that cardiac screening is being introduced across the netball super league here in England as a requirement from next season, and every player will be screened before the season starts. I also understand that it will be working with CRY to provide screenings for clubs and players where there is nothing already in place. This comes after Kaitlin Lawrence collapsed while warming up for a netball match and hospital scans showed that she had an irregular heartbeat. Lawrence was asymptomatic, young, fit and an elite netball player, and her experience shows just how crucial it is to screen young people playing sport.
I should, however, make it clear that many people can still play sport after receiving a diagnosis. Wonderful tools are available, along with fantastic cardiologists across the country, to facilitate that. We need only observe how successful Christian Eriksen has been since his collapse on the pitch during an international game. This need not be a deterrent; it is information. It is simply not good enough to say that screening young people will put them off sport and should therefore not be widely carried out. Crucially, however, the necessary level of screening is not being undertaken, which means that we must ensure that we have access to defibs and understand how to carry out CPR, which is just as important.
My hon. Friend the Member for Beckenham and Penge (Liam Conlon) and I met Arsenal’s team doctor, Zaf Iqbal, at the club’s training ground earlier this month. Zaf is passionate about cardiac health, and has been using his position at Arsenal—and at his previous clubs—to champion greater awareness of CPR and defibs among school-age children. I also want to draw attention to the incredible work that Brentford FC is doing with its Heart of West London campaign, opening up its ground to offer cardiac screening to the surrounding community; it carries out about 1,000 screenings a year. That kind of engagement is exactly what we need to get the message embedded in our communities of how important it is to be ready in the event of an emergency.
The fact is, however, that our defib network is nowhere near fit for purpose. I recently held a “defib dash” in my constituency, which effectively worked like a small-scale community audit of our defib network. The results were deeply concerning. Most of the constituents who took part had to dash for eight minutes or longer just to get to their nearest defib. Let me remind Members that every minute CPR or a defib is not used on someone suffering from a cardiac arrest, that person’s life expectancy falls by 10%.
Mark Sewards (Leeds South West and Morley) (Lab)
My hon. Friend is making a powerful speech, as my hon. Friend the Member for Harlow (Chris Vince) did earlier. May I pursue the question asked earlier by my hon. Friend the Member for Bolton West (Phil Brickell)? Defibrillators can be incredibly useful when they are rolled out to communities, for all the reasons given by my hon. Friend the Member for North West Leicestershire (Amanda Hack). It is hard to find an area in my constituency without a defibrillator that has been fundraised for and installed by volunteers, but I must admit that I do not know how to use one. Following this debate, I will go away and make sure that I do know how to use one, but how can we roll out defibrillator training nationally to ensure that as many people as possible know how to use them in an emergency?
Amanda Hack
I thank my hon. Friend for that important intervention. Defibs talk to you; there is no need to be mystified by their use. They are clever bits of kit, and a 999 emergency responder will talk people through the process. I ask everyone please to go and be trained, because this is really important stuff.
Jim Shannon
I thank the hon. Lady for making that point, and I thank the hon. Member for Leeds South West and Morley (Mark Sewards) for his intervention. Throughout my constituency and indeed Northern Ireland, defibrillators have been supplied to every school and community centre. The communities in Ards, Ballynahinch and the Ards peninsula have defibrillators in their city and village centres. We have an organisation called Ards Peninsula First Responders, which provides speedy training every month for those who want to learn how to use a defibrillator. On our defibrillators in Newtownards and elsewhere is a small diagram—an ABC for how to use them. I have not had to do this, but I have been told by First Responders, “If you follow these three directions, you will be able to use a defibrillator as well as anyone else.” Does the hon. Lady have the same opinion?
Amanda Hack
The key thing that we have been trying to do in my constituency—and I would encourage other Members to do the same—is to demystify defibrillators. There are some very easy tools online that can show people how to use them, and they are such clever bits of kit that no one should be afraid of looking into it.
John Slinger
Does my hon. Friend agree that the activities of charities such as the Our Jay Foundation in my Rugby constituency are critically important? Naomi Rees-Issitt created the Our Jay Foundation in memory of her son Jamie. Not only has it installed hundreds of defibrillators in Rugby and the surrounding area, including bleed control kits, but—to her point—it holds training sessions in the community given by qualified paramedics and nurses. I have attended one of them, and they are lifesavers just as much as the defibs that go into our communities. All of this helps to reduce the number of sudden cardiac deaths in young people.
Amanda Hack
I thank my hon. Friend for that intervention. I think the conversation on defibs has been a really interesting one, but that is obviously just part of the solution to cardiac risk in young people. The main point I was trying to make is that, until we can roll out an effective programme of screening, we need to make sure we have the CPR and defibs tools in our toolkit to make sure we can support a person if they are going into cardiac arrest.
Finally, CPR training and knowing where the nearest defib is are important parts of the solution, but when we are looking at cardiac risk in young people, it is about how we make sure that asymptomatic individuals are screened and made aware of information about how they may react if they have an undiagnosed cardiac condition.
I want to put on record my thanks to CRY, the British Heart Foundation, Resuscitation Council UK, Brentford FC, Arsenal FC, the East Midlands ambulance service, Kerrie from Vitalise Health and First Aid Training, and all the bodies that have supported me in my questions on health screening, as well as fantastic campaigners such as Hilary. The truth is that we could be doing far more to tackle sudden cardiac death in young people, so why are we not doing so? I would really love to hear from the Minister.
The Parliamentary Under-Secretary of State for Health and Social Care (Ashley Dalton)
I thank my good friend, my hon. Friend the Member for Harlow (Chris Vince), for bringing forward this debate and sharing the stories of Clarissa and Jude. I thank all hon. Members for their contributions, and I acknowledge the losses to which they have attested.
I must say that visiting the Harlow constituency was one of the highlights of my year, and it was a pleasure to open the new high-security containment labs with my hon. Friend and my right hon. Friend the Secretary of State. These labs are a critical part of our health and national security, and they bring jobs and growth to Harlow. I hope his constituents know how much their MP is battling for them in this place every day, and how his work is already paying dividends. I pay tribute to him for that.
Carla Lockhart (Upper Bann) (DUP)
I commend the hon. Member for Harlow (Chris Vince) for securing this debate. I believe I saw him with a little person—a little man—in the corridor, so I congratulate him and welcome him to parenthood. When he spoke of Clarissa, as parents we could not help but be moved.
I know this may be a slightly different direction, but many out there are concerned about the increase in the numbers of particularly young people dying from sudden death syndrome, and the potential link to vaccination and covid vaccination. This is not to get controversial, but can the Minister just assure the House that data is being looked at and assessed? The Minister has spoken of labs and technology. Can she give some information to the general public about the Government’s interest in this subject, and assure them that this is being looked at?
Ashley Dalton
The hon. Member will know that all vaccines are assessed and are not issued unless they are considered safe. We collect data on conditions and potential impacts right across the medical estate. I have not seen any data that would suggest there is a link to any particular vaccine, but if there is, the data would show us that and it would be considered.
My hon. Friend the Member for Harlow and I stood on a manifesto to tackle the biggest killers, including cardiovascular disease, to halve the gap in healthy life expectancy between the richest and poorest regions in England, and to reverse the legacy left to us by the previous Government. Through his work with the CRY campaign and everything he said in the Chamber this evening, it is evident that he is staying true to those promises. I also thank my hon. Friend the Member for North West Leicestershire (Amanda Hack) for further highlighting the work of CRY. Any MP who campaigns on prevention is pushing at an open door with this Government. We are shifting the focus of our NHS from sickness to prevention. As my hon. Friend the Member for Harlow rightly points out, it is a tragedy when young lives are lost to preventable illness. He and others make a powerful case for a national screening programme, so let me address that point head-on.
I fully support a national screening programme, as long as the experts agree that it would do more good than harm. Our National Screening Committee gives advice based on a range of factors and while balancing the pros and cons of screening population level groups, the committee has previously given evidence that introducing mass screening for sudden cardiac death could cause harm by misdiagnosing some people. For example, receiving a false diagnosis could lead to people being prescribed medication they do not need; people undergoing medical procedures they do not need, such as having an implantable defibrillator fitted; and people living in fear of sudden cardiac death when they are not genuinely at risk. However, the committee is currently reviewing the evidence for sudden cardiac death screening and will open a public consultation in early 2026. We will look carefully at the findings of the consultation and I know that the CRY campaign will make its voice heard.
Several Members discussed defibrillators, and their training and use. NHS England runs training sessions on first aid, CPR and the use of defibrillators both in the community and in schools under the Restart a Heart programme. NHS England has trained over 35,800 adults and children in CPR and defibrillator use in the past 13 years, and 2,134 so far this year. NHS England delivers the sessions via its resuscitation team and via its community first responders, and also runs lifesaving skills workshops for harder to reach communities and ethnically diverse groups. It has trained 407 people in lifesaving skills in that group so far this year.
It is important to remember the care and support that loved ones receive when they lose a loved one to sudden cardiac arrest, or when they find out that a family member has an inherited heart condition. NHS England’s service specification sets out how that care should be provided by specialist teams in a way that is tailored to meet the needs of families.
Fleur Anderson
I thank the Minister for giving way and for the good news about looking into the possibility of rolling out screening across the whole country, especially bearing in mind the evidence from Italy, where the good has been shown to outweigh the potential downsides. I look forward to getting involved in that consultation. The amount of training on CPR and the use of defibrillators has been extensive. The choice of song to sing along to, to get the rhythm right, is really important. Will the Minister share with us whether she would use “Stayin’ Alive” or “Pink Pony Club” as her defibrillator singalong song?
Ashley Dalton
I think “Stayin’ Alive” is a bit of a sharp one, really, isn’t it? Given that once “Pink Pony Club” is in my head I cannot get rid of it for weeks, I think I will probably opt for that one! My hon. Friend makes a really important point, which is that learning CPR and how to use a defibrillator properly is a crucial life skill. I am really pleased and proud that NHS England is continuing to roll that out in our schools and communities.
NHS England is also keeping under review the specialist service specification for providing care to families, working closely with the Association for Inherited Cardiac Conditions, Cardiomyopathy UK, Heart Valve Voice and the British Heart Foundation. We are also working with the NHS genomics programme to align the service specification with genomics resources. I will talk briefly about our vision of genomics.
We are going through a revolution in medical science that means we can transform the NHS over the coming decade from a service that diagnoses and treats ill health to one that can predict and prevent it. If we can harness the power of life sciences to the health service, we can achieve many of the aims my hon. Friends and others have set out today. Within a decade, every newborn will undergo whole genome sequencing, which assesses future risk of hundreds of diseases, including cardiovascular conditions. Every baby will have their DNA mapped, allowing people to receive tailored healthcare, long before symptoms begin.
Those advances could one day put an end to blanket screening and rudimentary health MOTs. Instead of mass screening, increasingly patients will be offered personalised health checks and targeted medicines far earlier, and adverse drug reactions will be avoided. That will help to transform the NHS from a reactive healthcare system into a proactive one. This ambition will be funded by a £650 million boost to genomics as part of the Government’s life sciences sector plan. We are just scratching the surface of what genomics, gene editing and life sciences can do.
Under this Government, NHS waiting lists are falling, ambulances are arriving faster, and we are lifting hundreds of thousands of kids out of poverty. Our 10-year plan is building on the founding principle of the NHS so that it provides healthcare free at the point of risk, not just at the point of need, and now we are shifting the focus of our NHS from sickness to prevention. Wherever we can go further on prevention, we will.
I have heard the case made by my hon. Friend the Member for Harlow this evening. He is a powerful advocate for those who have lost loved ones to sudden cardiac death, and we are listening to him and others who are pushing us to go further. I shall update him and, of course, the House next year, following the review of evidence and the public consultation.
Question put and agreed to.