Sudden Unexplained Death in Childhood

Derek Twigg Excerpts

Tuesday 17th January 2023 Westminster Hall

[Kwasi Kwarteng]

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.

[Derek Twigg (in the Chair)]

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.

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[Mr Mohindra]

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.

[Derek Twigg (in the Chair)]

I call Robbie Moore, and I ask you to take account of the time as well.

[Robbie Moore (Keighley) (Con)]

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.

[Derek Twigg (in the Chair)]

I will call the Minister no later than 5.16 pm.

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[Neil O'Brien]

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.

[Derek Twigg (in the Chair)]

I call Kwasi Kwarteng to wind up. You have a bit more time than we originally envisaged.