I beg to move,
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.
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.
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.
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.
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.
I agree with the hon. Gentleman.
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.
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.
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.
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.
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.
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?
Unsurprisingly, my hon. Friend makes an excellent point, and I will cover it in a short while.
Mortality statistics from Nomis indicate that about 128 children between one and 19 died of SUDC between 2013 and 2021. That is 128 families and their friends who have been devastated by sudden death. Unfortunately, in Hertfordshire, we had six deaths between 2017 and 2022; indeed, they were all in 2020.
I know that Nikki has put her own journey—her own story—on her website, and would I direct people to visit SUDC UK website. She went through great trauma back in 2013 when she lost her second child, Rosie. When my staff and I were researching for this debate in my office, all of us were emotionally moved by that, because we could all relate to the fact that this could potentially have happened to a loved one. Actually, not that long ago—back in December—I referenced the fact that I have another new niece, and I remember the joy I felt when I described her in the main Chamber. The other side of the coin would be the emotional shock of having to talk about the distress of losing someone at a young age.
With Rosie’s story, what made things worse was that it was the run-up to Christmas—there was a reference earlier to another family who unfortunately lost their child on Boxing day. For those families, what is meant to be a joyous time for families and friends will, unfortunately, forever be a real sore spot of emotional trauma, and the unknowns mean there has not really been much in the way of closure.
We have spoken about research. Hopefully the Minister, who is a very good Minister, will take away from the debate the fact that more research needs to be done. The Government have levers to help influence that, but I would urge academia to do more as well. It should not always require a Government steer to do the right thing.
We have spoken about the success of research into sudden infant death syndrome and about how, off the back of 13,000 research papers, there has been an 80% decline in deaths from SIDS. To date, according to my research, we have had only 55 research papers on SUDC, so there is a huge gap there, which can potentially—hopefully—be rectified.
In December 2022, the National Child Mortality Database reported data on SUDC for the first time ever. I hope we will continue to be report it, and in more detail, because what we have heard in other speeches today—my right hon. Friend the Member for Spelthorne articulated it amazingly well—is that the lack of knowledge is the main barrier to finding a long-term solution.
I will leave it at that, because I am sure there will be other excellent speeches forthcoming. However, I echo my right hon. Friend in saying that I believe that this is the start of the journey in educating more people in this place, and hopefully up and down the country, about SUDC.
It is a pleasure to serve under your chairmanship, Mr Twigg, and I thank my right hon. Friend the Member for Spelthorne (Kwasi Kwarteng) for securing this really important debate, which will hopefully shine a little light on the sad topic of sudden unexplained death in childhood.
It is only right that I begin my contribution by telling the story of a family from Silsden in my constituency whom I had the pleasure of meeting just last Friday. Cheryl, a senior nurse in our local A&E department, and Darren, a local police officer, are incredibly loving parents to two wonderful children. On Christmas day, they put their loving, happy and fun-going little boy, Jack, who was only 16 months old, to bed, only for him not to wake the next morning. That is incredibly sad news, and it was undoubtably devastating for the family. One cannot pull together the words to express the deep sense of loss, anguish, grief and heartbreak that Cheryl and Darren will be feeling. Of course, this also has an impact on their older son, Louis, who has lost a brother he will now not be able to grow up with and share that unique brotherly bond with. Since Jack passed away only on Christmas day just past, the family have had no answers as to what has happened, and investigations are still ongoing.
Sudden unexplained death in childhood is the fourth leading category of death for children aged one to four years old in England and Wales. Approximately 40 children are affected by SUDC in the UK each year—that is one to two seemingly healthy children passing away every fortnight, often going to sleep and never waking again. As we have heard, SUDC affects not just young children under one year old; more one to nine-year-olds die of sudden unexplained death than die as a result of road traffic accidents, drowning or fires.
Published epidemiological data suggests a common profile for children affected by SUDC. Most commonly, they are one to two years old, they are male and, most worryingly, they are dying unwitnessed, alone as they sleep. The child’s development is usually normal and their vaccinations are up to date.
Of course, as all of us have said, awareness is absolutely key, because if a parent, family member or friend does not know why the death has occurred, they will constantly ask, “Why?” Over 13,000 research papers have been published on sudden infant deaths. That has helped to pioneer safer sleep advice, which has led to an 80% decline in infant deaths. However, only 55 research papers have been written on SUDC.
Last year, 8 December marked the publication of the groundbreaking report “Sudden and Unexpected Deaths in Infancy and Childhood” by the National Child Mortality Database—I have read it, and it is well worth reading, for those Members who wish to do so. It concludes that, of the sudden and unexpected deaths in 2020 that have been investigated and reviewed, 16% are still classified as unexplained. It provides greater awareness and accuracy around understanding exactly which of the many children who are affected by seizures are at risk. It helps to address some of the knowns but, as many of us have outlined, there are still many unknowns. That comes back to the issue of why research is so important. I ask the Minister what we are doing to increase that research, as well as awareness, training among medical professionals, and the public information out there.
This is undoubtably a difficult topic to talk about, but we must never forget that at the heart of all this is the sad loss of a child. They leave behind a heartbroken family—parents, brothers, sisters and grandparents—and friends. In Jack’s case, he leaves behind a loving mother, father and three-year-old brother, Louis. I would like to thank them for their time in sharing their story and for educating me in the meeting I had with them last Friday.
It is a pleasure to serve under your chairmanship, Mr Twigg, and to speak on behalf of the shadow Health and Social Care team about this tragic and vital issue. I pay tribute to the work of the right hon. Member for Spelthorne (Kwasi Kwarteng), who has been such a strong advocate in addressing sudden unexplained death in childhood. I extend my sincere condolences to his constituents, Julia and Christian, who lost their son Louis to SUDC. Their work, alongside representatives of the charity SUDC UK, to raise awareness of this tragic cause of death has been extraordinary. I would like to place on record my recognition of the work that they and others have done.
As has been outlined, SUDC is the unexpected and unexplained death of a child. Data from the Office for National Statistics estimates that around 40 children are affected by SUDC in the United Kingdom each year. As we have heard in other Members’ contributions, it is the fourth leading category of death in children aged between one and four. SUDC is similar to SIDS—sudden infant death syndrome—but whereas SIDS applies to a child who dies before they are 12 months old, SUDC can occur between the ages of one and 18. Another important difference is that SIDS research has resulted in vital safer sleep guidance, whereas there is currently no guidance and there are no recommendations to mitigate the risks of SUDC in children aged one to 18.
I cannot even begin to imagine losing a child—there can be nothing worse and no pain more unimaginable. The additional cruelty of SUDC lies in its inexplicability, because we do not know what causes it. As it stands, these deaths are unpredictable and largely unpreventable. I know I speak for those on both sides of the Chamber when I say that it is incredibly important that the Government do everything they can to support research, awareness and understanding of this tragic disease. We also need to ensure that families burdened with grief after such an enormous loss have access to the mental health and emotional support that is undoubtedly necessary after losing a child.
The National Child Mortality Database has done amazing work to improve understanding of the scale and risk markers associated with SUDC. A recent study conducted by the NCMD highlighted the role that poverty plays in a higher risk of SUDC. Some 42% of unexplained deaths of infants happened in deprived neighbourhoods, as opposed to 8% in the wealthiest.
I would appreciate it if the Minister could outline what work is ongoing to understand SUDC and what action his Department is taking to support parents and families who have lost a child to it. I would also like to impress on him the importance of tackling socioeconomic inequalities, which we know drive poorer health outcomes for those living in the most deprived communities. If we are to build a happier and healthier future for every family, irrespective of where they are born, we must get a grip on these endemic inequalities across England. I would be grateful if the Minister could update the House on the Government’s work to tackle health disparities, with SUDC particularly in mind.
We must ensure that every child gets a healthy start in life—something that has informed Labour’s commitment to train 5,000 additional health visitors. Health visitors are skilled in spotting where there may be a problem with a child’s health and are therefore key to prevention and providing that support to families.
We also need to raise awareness. In preparing for the debate, I was incredibly surprised to discover that there is currently no information about SUDC on the NHS website, as we have heard from other Members. There is no co-ordinated national research and very little public awareness. I want to use the debate to support the calls for improved public awareness, information and research, and I hope the Minister will join me in that respect and set out what discussions he will have with the NHS to improve the availability of SUDC information and support.
In closing, we owe it to the families who have lost children, the campaigners who have raised awareness and the researchers who work around the clock to better understand and ultimately defeat SUDC.
I am grateful to my right hon. Friend the Member for Spelthorne (Kwasi Kwarteng) for securing the debate on this incredibly important issue. It is the first debate of its kind in this House and he made a number of important points, which I will address.
The first point was about raising awareness, which is something that the debate itself does. We recognise the devastation to families caused by the sudden and unexpected death of a child. Each death is a tragedy and that we are unable to offer the families an explanation for the child’s death after what will have been a long and potentially invasive process, including a coroner’s investigation, must compound the family’s confusion. For the death to be unexplained just adds to the trauma.
I thank hon. Members for some powerful speeches and interventions, including those from my hon. Friends the Members for Warrington South, for Runnymede and Weybridge (Dr Spencer), for South West Hertfordshire (Mr Mohindra), for Witney (Robert Courts) and for Keighley (Robbie Moore), and the hon. Members for Westmorland and Lonsdale (Tim Farron), for Oldham East and Saddleworth (Debbie Abrahams), for Hammersmith (Andy Slaughter) and for Lancaster and Fleetwood (Cat Smith), as well as hon. Members who have listened but not been able to speak today.
I acknowledge the advocacy work of the organisation SUDC UK, which is raising the profile of the issue and providing valuable support for families. We all share the same end goal, which is to reduce the risks of sudden unexplained death in childhood, and I welcome the contributions that have been made to today’s debate.
As has been mentioned, there has been a reduction of around 70% in the number of unexplained deaths in infancy since the early 1990s. The risk factors are well recognised and the steps that parents can take—safer sleeping practices or stopping smoking—have formed clear messages for years. We are still sponsoring more research on infancy to help reduce those risks further.
The Minister mentioned sudden infant death syndrome. One of the asks that has come from both sides of the House has been whether the Department and the NHS can give the same priority to SUDC as it gives to SIDS in terms of education, research and provision of information to the public.
That is exactly what we want to do. We are committed to the health service learning from child deaths. In 2019, the Government published the “Child Death Review Statutory and Operational Guidance (England)”, advising NHS trusts on how they should support, communicate with and engage with families following the death of someone in their care. Listening to bereaved families and ensuring clear communication is integral to the process, and putting clear support in place is a top priority. That guidance sets out the full process that follows the death of a child in England. It builds on the statutory requirements set out in “Working Together To Safeguard Children” and clarifies how individual professionals and organisations across all sectors involved in the child death review should contribute to reviews.
It is important that when a child dies, bereaved parents should be supported to understand the child death review process and how they are able to contribute to it. The family should be assigned a key worker to act as a single point of contact for the bereaved family, who they can turn to for information and who can signpost them to sources of support. The hon. Member for Lancaster and Fleetwood mentioned one particular, excellent way to do that.
Each local authority area has a child death overview panel that is responsible for reviewing information on all child deaths, looking for possible patterns and potential improvements in services, with the aim of preventing future deaths. This process enables us to act quickly to address local failings within the system.
The first step towards understanding the problem is to get the data. In 2018, NHS England supported the establishment of the national child mortality database to reduce preventable child mortality in England. The NCMD records comprehensive data on the circumstances of children’s deaths and is the first of its kind anywhere in the world. The child death review process aims to ensure that information regarding every child death is systematically captured and submitted to the NCMD to enable learning to prevent future deaths.
In December, the NCMD published its report into sudden and unexpected deaths in infancy and childhood. The Government are grateful to the NCMD for its important research, which is a significant step forward. Of the 204 unexpected and sudden deaths of children reviewed by child death overview panels in 2022, 32 were classified as unexplained. The report highlighted that both explained and unexplained deaths in this age group were associated with a history of convulsions, but that association still needs further research, which I will come back to later.
The NCMD provides evidence for investigation, responding to deprivation, housing and other potential risk factors, which the hon. Member for Denton and Reddish (Andrew Gwynne) asked about. Housing Ministers are already strengthening the powers of the regulator of social housing to tackle unsafe homes, and introducing a decent home standard for the private rented sector for the first time ever, which will make sure that privately rented homes are safe and decent.
My right hon. Friend the Member for Spelthorne asked how we will improve medical education, and the report recommends consistent national training on the child death review statutory process and on sudden unexplained death in childhood. Sudden deaths of children over 12 months of age are not well understood, especially where those deaths remain unexplained. As I have outlined, child death overview panels will continue to develop their processes following the publication of the child death review statutory and operational guidance, and they will be supported by the NCMD and work with relevant professional bodies where appropriate.
We are modernising healthy child programme resources to improve available evidence for health and other professionals who work with children. This will include stronger evidence on safer sleep and sleep hygiene for older children, and NHS England is also making commitments to improve knowledge. The children and young people programme is reviewing the patient information made available, so that it is relevant and appropriate. This will involve a review of all NHS-commissioned information, including on febrile seizures. NHS England is also conducting a review of the leaflet that is handed out when a child dies, which will provide further information on sudden unexpected death in childhood.
The hon. Member for Lancaster and Fleetwood asked specifically about the NHS website. The team are reviewing the information with patient groups, so that it is appropriate.
A number of Members have quite rightly called for more research, and the report calls for further research into SUDC to better identify modifiable factors. My officials have contacted their counterparts at the University of Bristol to discuss potential research priorities, and I am happy to continue that dialogue with Members of this House and others, to scope further research priorities. Such research will help us better understand what can be prevented. The National Institute for Health and Care Research welcomes funding applications for research into any aspect of human health, including sudden unexplained death in childhood, and NHS England will be working with the NCMD to track trends in modifiable factors further. Their work will help to raise awareness across professions and identify key areas for research. My officials are also in contact with the chief nursing officer in England about any opportunities linked to the CNO’s research strategy. I look forward to hearing experts and parents’ suggestions on research, so that we all have better data on prevalence and a shared understanding of risks around gender, ethnicity and other characteristics.
Someone would have to have a heart of stone to not be moved by the contributions to today’s debate. By raising awareness and developing the understanding of modifiable factors, we can provide better information to parents and professionals, and help to reduce the risks, so that more families will not have to suffer in the same way.
Thank you, Mr Twigg. We have heard some fabulous and heartfelt speeches from across the House. In many years in Parliament, both on the Front Bench and on the Back Benches, I have debated many issues of national importance, but I do not think that any of the issues I have ever spoken about has had such emotional impact on the people affected. I was particularly struck by the concordant note—the note of agreement—from Members of all parties. It seems to me that there are a number of things on which we all agree—a number of important issues where there is broad consensus, and on which we will be challenging the Minister and his colleagues to make progress.
Undoubtedly, research is the key element. We heard that there are something like 13,000 papers on SIDS, by contrast with 50 on SUDC. That balance has to shift somewhat if we are to get improved outcomes on SUDC. Clearly, public awareness has to be a big part of getting better results. Hon. Members have mentioned the NHS website, and I feel very strongly that it should be improved to incorporate many of the things we have discussed today.
Finally, it is really important that we continue to revisit this issue. On many occasions, I have had debates here in Westminster Hall or in the main Chamber where we have said lots of warm words, but we have had very little in the shape of follow-through. On an issue of this kind, which is so important and has touched everyone emotionally, we have to be able to follow through. I urge the Minister to meet Nikki, other families and people involved in SUDC UK’s vital work, so that we can have a dialogue and achieve much better outcomes than we are currently seeing today.
Question put and agreed to.
That this House has considered sudden unexplained death in childhood.