That this House has considered sudden unexplained death in childhood.
It is a great honour for me to give my first speech as a Back Bencher in about six years on this vital subject. We are here to discuss something that is incredibly difficult to deal with, emotionally very taxing, and one of the most serious medical phenomena in our country—something that has not had the public attention it deserves: sudden unexplained death in childhood, or SUDC.
This vital subject was brought to my attention while I was still in Government. Julia and Christian Rogers came to see me at the beginning of October, when I was still Chancellor of the Exchequer. In that role, I would not have been able to raise this vital subject personally. I pay tribute to my constituency neighbour, my hon. Friend the Member for Runnymede and Weybridge (Dr Spencer), for his diligence in pursuing the subject while I was still in Government. Luckily, as a matter of privilege to me, I can now raise it myself. I cannot think of a better, more urgent subject to raise in my first Back-Bench debate for many years.
When Julia and Christian came to see me in October 2022, they told me the story of their son, Louis, who tragically passed away in 2021 before he reached the age of two. Julia and Christian lived with Louis in Shepperton in my constituency, and they loved their little boy with all their hearts. Of course, no occurrence is more tragic than the death of a small child. It was particularly disturbing that they knew very little about the illness that took away Louis’ life. One can only imagine the horror of discovering one’s child lifeless, and the sheer bewilderment of trying to understand the causes of that tragedy.
Julia and Christian introduced me to other bereaved parents who had gone through this heart-wrenching occurrence. The national charity SUDC UK does vital work to promote more understanding and sensitivity around a subject that, as I said, has drawn too little attention in the past. SUDC is among the leading categories of death in England and Wales for children aged between one and four. As a community, we have to engage more vigorously with this phenomenon.
Technically, SUDC is the sudden and unexpected death of a child between one and 18 years of age. Those deaths, by their definition of sudden and unexpected, often remain unexplained after a thorough investigation, including a post-mortem. This is one of those areas that modern medical science has still not really got to the bottom of, despite the great advances we have made.
It is good that we can unite and collaborate to address some of the issues raised by SUDC. Christian’s aunt is my constituent, so I learned about Louis from her. Many of us here are parents, and this issue is deeply worrying. Like the hon. Member for Runnymede and Weybridge (Dr Spencer), I was a public health consultant and have come here from working in the NHS. This issue has not had the profile it needs—just 50 research papers, compared with 12,000 on sudden infant death syndrome. I hope we can do some joint working on the issue to raise the profile of risk factors and so on.
I am very pleased to join the hon. Lady in raising the profile of the condition. This category of death has never really gathered the attention it deserves. As far as I know, this is the first time it has been debated on the Floor of the House in this Parliament.
I pay tribute to my constituents, the Grogan family, in particular Sarah, a teacher at Cobbs Infant School in Appleton. She has been in touch with me to tell me about her experience with Frankie, her little boy, who died at the age of three. Sarah has helped to inform medical professionals, including GPs, through the videos she has made. I have learned a tremendous amount from her, and I am sure my right hon. Friend will join me in paying tribute to her for her work on this important topic.
I am delighted that my hon. Friend has made that contribution. I must press on to the end of my remarks and look forward to what other hon. Members have to say on this sensitive, moving and tragic subject. The silver lining is that we will be able to make more progress in the years ahead.
It is vital to get on the record an undertaking from the Minister and his Department to encourage consistent medical education and training—there is currently very little—to help prioritise research into this category of death. Our urgent, immediate request is an undertaking to increase public information about this tragic phenomenon. How will the Minister help to prioritise scientific research to better understand this phenomenon, and to work out ways we can prevent and reduce the tragic deaths such as those experienced among many of our friends and wider communities?
I have written to the chief executive of the NHS to ask for more and better public information. The website should be updated. I urge the Minister to engage with NHS officials and managers through a commonly agreed platform, on which we can progress.
The initial response to this debate has been incredibly heartwarming and impressive. In the last few days, dozens and dozens of people have written in. They have outlined their experiences and told us about their own tragedies and their families, which have been torn apart and devastated by this phenomenon. It would be invidious of me to talk about those responses individually, but common themes run through all the submissions in this overwhelming response—in all the evidence we have accumulated in the last few days.
The thing that comes out most tragically and vividly to me is the sense of utter bewilderment about the cause of death. Many of us in our lives have dealt with personal tragedy and the passing of loved ones. In most of those instances, we have understood the nature of the illness, and there has been a degree of timing and ability to adjust to an appalling series of events. But let us imagine the death of a child who has all of his or her life in front of them and it is suddenly ended. If we can imagine that for one of our own children, we get a sense of how tragic and difficult that occurrence is. I commend the many people here who have gone through that heart-wrenching experience, who have had the courage to reach out to come and speak to MPs, and who work incredibly hard to make sure this goes further up the agenda.
May I remind Members that they should bob if they wish to be called in this debate? There are five standing, so I must limit speeches to five minutes or so to get everybody in. I am sure you will all work together to try to achieve that before the wind-ups. I call Tim Farron.
It is a pleasure to serve under your chairmanship, Mr Twigg, and a pleasure to follow the right hon. Member for Spelthorne (Kwasi Kwarteng), who made a very moving and thoughtful speech. I especially congratulate him on securing this really important debate.
SUDC is an unimaginable tragedy to strike any family. We are here because people in our communities have reached out to us to share their experiences with us. I know we all feel that it is a huge responsibility and an honour to share their experiences.
I spoke last night and previously to my constituent Charlotte and her husband Andy regarding their little son Wilfred, who was two years and 10 months old when he died a little over a year ago. Charlotte and Andy refer to Wilfred as a
“vibrant, energetic little boy who had a vivacious and fearless lust for life.”
She goes on to say:
“The shock that reverberates into every aspect of your life when your child dies unexpectedly and suddenly is unimaginable”.
Unimaginable it is to those of us who have not personally experienced that tragedy. As I seek to honour Wilfred, perhaps the best thing that I can do is speak briefly about actions that could spare other families from experiencing the grief and tragedy with which Wilfred’s family continue to live.
The challenges are what to do with the evidence and what to do about the lack of evidence. Those are the two things that it would be good to consider. Let me first turn to what to do about the evidence. Wilfred passed away at two years and 10 months. At 10 months old, he suffered his first febrile seizure. He was never referred for further investigations to ascertain the cause or to ascertain whether a febrile seizure could lead to anything more dangerous. Wilfred had his sixth febrile seizure, which led to a cardiac arrest, and he passed away just a few days later.
I agree with what the hon. Gentleman said. I am here because a constituent told me about the tragic death of her two-year-old nephew in 2021. I am educating myself, with the help of SUDC UK, but it is difficult because there is so little debate, publicity and awareness. I hope that this well-attended debate will mean that research and education is forthcoming. It is a very rare but absolutely devastating condition.
In memory of Wilfred, in honouring his family, and as we remember all those who have tragically died and we seek to support their loved ones, we ask that the Government take practical steps to help us to tackle the horror of sudden unexplained deaths among children.
I spoke to another family—I will not name them—who talked about the loss of their child not so long ago. The mother said to me:
“It clouds everything you do, feel and breathe. I hate that it happened to him and not me. I will never not be able to see him in A&E, thinking this can’t be happening, he is healthy, and I left him a couple of hours ago absolutely fine.”
There is a reason why it is such an uncomfortable issue, but it is important to grasp uncomfortable issues, not only in honour of the memory of Wilfred and everybody else who has passed away and to honour their families, but to prevent any other families from going through the same thing in future.
It is a pleasure to serve under your chairmanship, Mr Twigg. I am pleased to be here supporting the charity SUDC UK. I pay tribute to my right hon. Friend the Member for Spelthorne (Kwasi Kwarteng) who introduced me to the work of SUDC UK. I am proud to have played a very small part in helping to support it and getting this debate.
Last year, after said introduction, I had the pleasure of meeting Nikki Speed and Julia Rogers. They are two incredibly brave parents involved in SUDC UK, which is the charity that works to understand and prevent sudden unexplained death in childhood. I was saddened, upset and touched by their personal stories. I was also inspired by their commitment to supporting others, trying to improve understanding, pressing for further research into sudden unexplained death in children and making sure that others do not have to go through such a tragic event as they did.
As a parent myself, I cannot imagine anything worse than losing a child, but not knowing why they died must make it even harder still. While sudden unexplained death in childhood is frankly very rare, it affects about 40 children in the UK each year. That is 40 families each year facing the same questions and challenges. SUDC UK works to support those families and ensure that better and more consistent support is made available. Crucially, it campaigns to gather more information in the hope of understanding and ultimately preventing such deaths in future.
As a scientist by background, I agree that understanding has to be built on sound data, but the challenge with understanding sudden unexplained death in childhood begins at the very start. Currently, variation in investigation and certification following the sudden unexplained death of a child means we cannot know exactly how often SUDC occurs. There is no single specific code recorded, so gathering evidence on prevalence and mapping any factors or trends that might be present is very difficult, and the information is almost certainly incomplete.
I congratulate the right hon. Member for Spelthorne (Kwasi Kwarteng) on starting the parliamentary conversation on this important issue. The fact that this is the first debate on the subject suggests to me that it is the beginning of a productive conversation.
I speak today on behalf of my constituent Alexander. On Friday I sat down with Alexander’s mum, Emily, and his dad, Darren, at their home in Lancaster. I also met his younger brother Freddie and baby sister Isabelle, who Alexander never got to meet because he died suddenly with an unexplained death on Boxing day 2021. He was three years old.
I will start my contribution by saying a little about Alexander. He was a happy, healthy three-year-old. He was doing well at nursery, and he loved Peter Rabbit and all things vehicles. He was a really loving big brother to Freddie, and he was really looking forward to meeting his new baby sister, as his mum was six months pregnant when he passed away. After a perfect Christmas day, Alexander appeared under the weather, and his mum took his brother Freddie out for a walk to give Alexander time to have a rest and a nap. Emily did not know that by the time she returned to the family home in Lancaster, her world would have changed forever.
Aside from a previous history of febrile seizures, there were no signs that Alexander was seriously ill or at risk of dying suddenly and unexpectedly. That is the reality of SUDC. It is sudden, and we currently do not know if there is any way to reduce the risk. There is no preparation and no warning, and families are left with little or no answer about why their child has died.
It would be very easy to use this debate to set out all the things that went wrong and could have been done better, but I want to talk about something that went really well. Emily and Darren were given a SUDC nurse, Jo Birch, who has been a real support to the family through a year that has been, quite frankly, horrific. This is something that is in place in Lancashire, but not everywhere. I take this opportunity to thank Jo for her work and share with the House her role. Jo is part of a nurse-led SUDC service. It is the first nurse-led SUCD service in the country—most are paediatric-led. The service began in 2008 and covers the whole of Lancashire. It follows each case through until the final stage of the process, which is the child death overview panel. For the first 10 years, the service was just two nurses working Monday to Friday, but since 2018 it has become a seven-day service. I am pleased to learn that there are now a couple of other nurse-led teams, although Lancashire remains the only one like it in the north of England.
It is a pleasure to serve under your chairmanship, Mr Twigg, and I commend my right hon. Friend the Member for Spelthorne (Kwasi Kwarteng) for securing this really important debate.
Nikki Speed was referenced earlier, and she is in the Public Gallery. She is actually one of my constituents, and I will use the words the hon. Member for Hammersmith (Andy Slaughter) used earlier: “Thank you for educating me.” As someone who has not been blessed with children, I was not aware of SUDC until the run-up to this debate. The really important point about today’s debate is that it is about educating more people about SUDC.
I will come on to various themes a bit later, but I hope the Minister will take away three important aspects: one is about education, the second is about research and the third is about the need for more public information. In my eyes, it would be quick win to update the NHS website with details about SUDC.
Robert Courts (Witney) (Con)
I have also been very moved by the many constituents who have written to me on this issue. My hon. Friend mentioned three points, all of which are important, but does he agree that the key one is perhaps research, which focuses in on causation? Although we will be able to see some common factors, no information we give will be helpful unless we understand the causation?
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The other principal thing that I have noticed is that there is not only bewilderment and the initial horror and confusion around the event, but a marked degree of ignorance about this phenomenon among the wider public. People do not know about this. We used to read and hear about what was called cot death, which was technically applied to children under the age of one, but, for the age group between one and four and for older children, there was not even a word or a phrase to describe what happens. If this debate can start a wider conversation about SUDC, I will feel that we have done a bit of our job. This is not the end; this is just the beginning of a wider debate on a deeply tragic occurrence.
Finally, because we do not have much time, I want to thank Nikki Speed, the chief executive officer of SUDC UK, who is here, and Julia and Christian Rogers for bringing this important subject to my attention and enabling us to have a wider debate. As I have said, I think it is the first time that this has been discussed, certainly in my experience as an MP of 12 years, in these precincts. I hope we can continue to work together to find adequate solutions and improve outcomes for people in this country.
We have had successes on the phenomenon of cot death—we made huge strides with that—and it is vital now that we turn our attention and expertise to SUDC. I thank Members from across the House who have listened with real respect not to me, but to the gravity of the debate. I am very interested to hear what my hon. Friend the Minister will say in response to our speeches.
Research by the US branch of the charity Sudden Unexplained Deaths in Childhood shows that roughly a third of sudden unexplained child deaths happen to children with a history of febrile seizures. So they are not totally unexplained, are they? At least some of them are not. However, febrile seizures are mostly not treated as serious or potentially serious. Most NHS trusts do not have a pathway to deal with children who have suffered a febrile seizure, and that surely must be addressed urgently. Febrile seizures must be seen as a red flag that all NHS providers should be aware of, and they should be equipped to act accordingly.
I want also to refer to something that tends to affect not very young children, but young people who are still minors: deaths caused by undiagnosed heart conditions. In particular, I want to refer to the work of CRY—Cardiac Risk in the Young—which does tremendous work in screening young people, particularly those who have any kind of family history but even those who do not, to see whether there is a potential risk. Thousands of people have been assessed by Cardiac Risk in the Young, which is a wonderful charity that works across the north-west and further—indeed, it has done sessions in Kendal. I encourage the Minister to look into how we can screen young people, particularly if there is any family history, to ensure that we do not lose them to undiagnosed heart conditions.
That is what to do with the evidence. What do we do about the lack of evidence? Simply, for the children we lose to sudden unexplained death, it is indeed totally unexplained: there are no clues. We ask collectively today that the Government prioritise scientific research into sudden unexplained deaths among children, potential causes and modifiable risk factors. We also ask that the Government and the NHS prioritise medical education to increase awareness.
Without that, it is difficult—nigh impossible—for research into SUDC to be conducted. Let us compare that with sudden infant death syndrome, which is the unexplained death, usually during sleep, of a seemingly healthy baby who is less than a year old. That is recorded. There have been thousands of studies conducted, as the hon. Member for Oldham East and Saddleworth (Debbie Abrahams) pointed out, and research papers published, which have helped to contribute to the safer sleep advice that led to an 80% reduction in that category of infant deaths. In contrast, my understanding is that only 55 research papers into SUDC have been published worldwide.
The requests of SUDC UK are quite simple. It asks the Government to recognise SUDC and, by doing so, to ensure that consistent support is available for those affected. It also asks that clear, consistent information is provided about SUDC, for families and for the medics who may experience it in their careers. The charity asks the Government to support changes to enable clear and consistent data to be gathered, and research to take place as a result, so we can learn more about sudden unexplained death in childhood and, hopefully, learn one day how to prevent such tragedies. That makes complete sense when it comes to tackling the challenges and, we hope, turning around the horror that is sudden unexplained death in childhood. I look forward to hearing the Minister’s response and his and the Government’s thoughts on what we can do to take this forward.
In the spirit of the debate, I welcome the approach of Government and Opposition Members who see this as the start of a journey and of the work we need to do in this area to have the same impact on SUDC as has been made on SIDS over the years. I give my huge thanks to Nikki and Julia for their incredible strength and dedication to this work. There are a whole host of people involved in SUDC UK, and I thank everybody who is part of the team. It is incredible what they are doing by taking this forward. I hope the Minister and the Government support the work of SUDC UK not only in this debate, but in the months and years to come.
Emily, Darren and their family ask the Government to do better by the families who are affected. They would like the Minister to take up the issue, as outlined by the hon. Member for Westmorland and Lonsdale (Tim Farron), of consistent national medical education on SUDC. Alexander’s parents feel that we particularly need to examine the links between febrile seizures and SUDC, as the limited research that exists suggests that there is an association. His parents were frequently told that such seizures were normal and he would grow out of them.
One thing that was very clear in my conversation with Alexander’s parents is that they never want any other family to have to go through what they have been through. They want to improve public information on SUDC, and that has to start with the information on the NHS website. I ask the Minister if he will encourage the NHS to urgently and immediately include appropriate information on SUDC on the NHS website. None of us can do anything to bring Alexander back, but we can all learn from his life and take action to ensure there is more research and more information on SUDC.
Finally, I want to say that Alexander is blessed to have a mummy like Emily and a daddy like Darren. Their love for their son shines through in all that they are doing in his memory. In his three years with us, Alexander touched the lives of so many people that he met, from his key workers and staff at the Lancaster University Pre-School Centre, to friends and neighbours. I thank all those constituents—there have been so many—who have written to me about today’s debate, asking me to attend and speak on behalf of Alexander.