Sudden Unexplained Death in Childhood

Ben Spencer Excerpts

Tuesday 17th January 2023 Westminster Hall

[Dr Ben Spencer (Runnymede and Weybridge) (Con)]

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.