Sudden Cardiac Death in Young People

Motion made, and Question proposed, That this House do now adjourn.—(Jake Richards.)

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.”

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.

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 Conor—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.

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.

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.

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?

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 Conor 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.

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.

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.

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?

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.

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.

Motion made, and Question proposed, That this House do now adjourn.—(Jake Richards.)

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.