Sudden Unexplained Death in Childhood

Andy Slaughter Excerpts

Tuesday 17th January 2023 Westminster Hall

[Tim Farron (Westmorland and Lonsdale) (LD)]

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.

[Andy Slaughter (Hammersmith) (Lab)]

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.

[Tim Farron]

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.

--- Later in debate ---

[The Parliamentary Under-Secretary of State for Health and Social Care (Neil O'Brien)]

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.

[Andy Slaughter]

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.

[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.