Sudden Unexpected Death in Childhood

Tuesday 24th March 2026 Westminster Hall

09:31

[Andy MacNae (Rossendale and Darwen) (Lab)]

I beg to move,

That this House has considered Sudden Unexplained Death in Childhood.

It is a pleasure to serve under your chairship, Sir John, and to open this important debate. Today we are discussing a category of child death that has previously been described in this room as

“one of the most serious medical phenomena in our country”.—[Official Report, 17 January 2023; Vol. 726, c. 88WH.]

Sudden unexplained death in childhood is the fourth leading cause of death in children aged one to 18. Since Parliament last debated this issue in 2023, in the UK around 120 children who appeared perfectly healthy have died suddenly. That is the equivalent of four full classrooms of pre-school and school-aged children—four classrooms of lives cut short without explanation.

For families, the devastation after a child dies is immediate and lifelong. What makes SUDC uniquely cruel is not only the loss, but the absence of answers. Why did those children die? I can only imagine the pain of that. When we lost our daughter Mallorie to Edwards’ syndrome, we at least had the comfort of knowing why and what was coming. We knew there was nothing more we could do. Families experiencing SUDC have none of that. It is brutal. We cannot continue to tell grieving parents, “I am sorry; we simply don’t know why your child died.” As a society we have a responsibility to do all we can to find the answers to prevent future deaths. That is why today we ask the Government to lead the search for answers through a co-ordinated national plan.

First, let us be clear about what SUDC is and what it is not. Sudden unexplained death in childhood is the sudden unexpected death of a child over one year old that remains unexplained after a full investigation. Cases do not involve crime, terminal illness, diagnosed epilepsy, cardiac conditions or tragic accidents. The children appear healthy. They fall suddenly ill or go to sleep and never wake up. Parents, grandparents and siblings are left asking, “Why did this happen? Could it happen again? Is there a genetic risk? Will my other children die? Should we risk another pregnancy?” Those are questions that currently no one can answer.

At the heart of today’s debate and our discussion is a little boy named Frankie Grogan. Frankie was three years old: bright, curious and full of energy with a particular love of giraffes. His family had every reason to believe that they would watch him grow and thrive. Instead, he went to sleep and did not wake up. The night before, Frankie was excited that his father would be running the Manchester 10k the next day. He briefly woke at 4.30 am asking for water. A few hours later, he was found to be still and unresponsive. Despite a thorough investigation, no cause of death could be identified. That happened in 2019 and Frankie’s family, who are here today, still do not know why.

In the midst of unimaginable grief, Frankie’s grandfather, Brian Topping, came to see me. He did not ask for sympathy; he asked for structure, leadership, co-ordination and a plan. Frankie’s story reminds us that behind every statistic is a child with a name, a personality and a future that should have been. It is because of Frankie and the determination of his family that the debate is taking place today. Through SUDC UK, families, clinicians and researchers have united around the conviction that unexplained should never mean unexamined. We know that research and awareness raising, backed up by national leadership, can make a profound difference. In other areas of childhood death, when priorities are clear, progress follows.

[Dr Roz Savage (South Cotswolds) (LD)]

I thank the hon. Gentleman for bringing forward this important debate and for his very moving speech. I recently had the honour of meeting Eleanor Wroath, who is here in the Gallery today with her son Sam. Eleanor lost her daughter Miranda, aged 18 months, in 2008. Since then, she has been a tireless campaigner for raising awareness of sudden unexplained death in childhood. She and Sam will be running the Great North Run in support of the charity. Does the hon. Gentleman agree that, as highlighted by campaigners such as Eleanor and Sam, there is an urgent need for more specialist research to understand the causes of and the risk factors underlying SUDC?

[Sir John Hayes (in the Chair)]

Order. Given the seriousness of the subject and of the hon. Lady’s intervention, I let that go, but interventions should generally be slightly more pithy.

[Andy MacNae]

Yes, of course I agree, and I am coming on to the research. We simply owe families answers and our best efforts to find those answers.

As I was saying, we know that research and awareness raising, backed up by national leadership, can make a profound difference, as it has in other areas. When priorities are clear, progress does follow. For example, research and safer sleep campaigns have significantly reduced unexplained infant deaths—known as sudden infant death syndrome, formerly cot death. About 200 babies die from SIDS each year compared with 40 older children from SUDC, yet there has been 100 times more research into SIDS than SUDC, which receives only a fraction of the attention.

Peter Fleming CBE, the clinical lead for the SIDS Back to Sleep campaign and a scientific adviser to SUDC UK, has said:

“Research into unexpected deaths in infancy has led to an 80% reduction in such deaths over the past 30 years in the UK. Unexpected deaths in older children are less common, much less well understood, and to date little research has been conducted in the UK to try to understand or prevent such deaths… I am convinced that with the right research we will soon be able to prevent many deaths”

of older children. The families here today are not asking for guarantees—they understand that science takes time—but simply asking for this issue to be treated with the urgency it deserves.

[Mr Gregory Campbell (East Londonderry) (DUP)]

I congratulate the hon. Member on securing this debate on what is an incredibly emotional topic. It is difficult to imagine parents having grief beyond what he is describing. On the research, does he agree that while no guarantees can be given, if Governments put more money into it, families will understand that and will see progress and, we hope, a better outcome?

[Andy MacNae]

Precisely, and that would be to treat this issue with the importance, urgency and focus that it deserves. The very fact that most research is now charity-led is quite revealing.

This research includes the Pioneer study—a population-based investigation to reduce sudden unexplained deaths in childhood—at the University of Bristol, which is beginning to analyse national mortality data and incorporate family-led research priorities. Science has advanced: genomics, cardiology, neuropathology and data science now offer real hope that the causes that were once thought unknowable may finally be within reach. However, scientific possibility alone is not enough. Findings from the UK’s Pioneer study, alongside the growing body of global evidence on SUDC, must be properly considered and applied. They should inform linked datasets and guide action by organisations such as Genomics England, the National Institute for Health and Care Excellence, the National Institute for Health and Care Research, the Department of Health and Social Care and the NHS.

The opportunity is there, but right now we rely far too much on this limited charity-funded research. If we are ever to shift the dial, as the hon. Member for East Londonderry (Mr Campbell) said, we need a national plan delivering co-ordinated, planned actions that enable and accelerate meaningful projects.

[Sarah Edwards (Tamworth) (Lab)]

I thank my hon. Friend for bringing forward such an important debate. Constituents of mine have asked me to attend not just to thank him, but to support his calls for a co-ordinated strategy. They lost their son when he was three, so they share all such families’ feelings that more needs to be done to get to the bottom of understanding the unimaginable tragedy that many parents have suffered, so there is a bit more closure.

[Andy MacNae]

I thank my hon. Friend for that intervention, which again focuses on the need for co-ordination in the effort to meet the scale of this challenge.

One of the most compelling issues requiring investigation is the association between SUDC and febrile seizures. National and international data show that 30% of SUDC cases involve a history of febrile seizures—10 times higher than in the general population. Frankie Grogan had 12 seizures before he died, but he was never reviewed by a specialist. At this point, it is really important to stress that febrile seizures are very common and SUDC is rare, but the persistence of this correlation—known before the last debate—demands investigation. A national plan must accelerate understanding of the link and determine whether children who have repeated febrile seizures, or a particular subset of affected children, need different pathways of care.

We must also improve public information. Information for families is inconsistent and, at times, invisible. Leaflets on febrile seizures vary significantly across NHS trusts; some fail to mention that seizures can occur during sleep or that monitoring options exist. SUDC itself—including the 60% of cases with no seizure history—is missing from the NHS website. After the 2023 debate, a token reference was added to the SIDS page, but then removed. Imagine a family receiving a post-mortem conclusion of SUDC but finding nothing when they search the NHS website. That is clearly unacceptable, but something that the Government can easily fix.

There has been welcome progress in other areas. The national child mortality database is a world-leading resource. Since the previous debate, the NCMD has created SUDC-specific forms and launched pathways for genomics and cardiac screening. SUDC UK, a charity founded only in 2017, has helped to ensure that families have access to whole genome sequencing through the R441 pathway. That advocacy was born out of what Nikki Speed, chief executive of SUDC UK, describes as the “paralysing fear” that she and many families carry every day. She explained to me that for years after her loss, she got little sleep, because she was constantly having to have a hand on her surviving children to be sure they were alive and well.

That fear leads families to delay trying for another child, even though a new life could be a source of hope and healing amid loss. It is completely rational for a parent to fear, if one of their seemingly healthy children has died without explanation, that their other seemingly healthy children could also be at risk. That is why genomic and cardiac screening is so important: it not only informs research but protects surviving siblings. For some families, genetic analysis has revealed risks requiring vital preventive treatment, yet those crucial tests are currently available only after the post-mortem process concludes, which brings me to the next point.

Paediatric pathology is in crisis, as summarised in a recent report by the Royal College of Pathologists. Families experiencing SUDC routinely wait nine to 12 months, or sometimes longer, for a post-mortem conclusion. During that time, they live in fear—fear for their surviving children, fear of future pregnancies, fear of the unknown. Their grief is suspended and their lives are on hold. Only after that traumatic wait can they finally access genomic testing or cardiac screening to safeguard their children.

After speaking with Brian and with Nikki, I would like to outline the typical timeline for a family affected by SUDC. Your child is fine. Then they die, leaving you traumatised and in shock. The child is taken away from you, and you have no control over what is happening. The ensuing process is statutory, but the response is based on evidence from infant death and so is suboptimal. After scary interactions with the police and in deep shock, you return home to deafening silence or to the child’s siblings, to whom you must tell the very worst news. Then you wait. You do not wait one week or two. You do not wait a month or even six. You most likely wait nine to 12 months. If the pathology is complex, you wait even longer. Throughout the whole wait, you are scared for your other children and scared to get pregnant again. You put your life and your grief on hold. Only then, often about a year later, do you receive the post-mortem report. You have been desperately waiting for this moment, but now it is here it brings back all the trauma of losing your child, and only now are you eligible to see whether anything hereditary is putting other family members at risk.

This is inhumane. When we lost our daughter, we had the answers right away, yet the trauma is still with us. I cannot fathom what it would be like to sit in deafening silence for months, and the long-term damage that that could do. This must change. A national plan should establish faster pathways for cases in which timely information directly affects vulnerable bereaved families and child safety.

[Carla Lockhart (Upper Bann) (DUP)]

The hon. Member is certainly making a very powerful speech on this issue. On 7 January 2024, Teddy Jason Williamson, aged just seven weeks and from my constituency, died of sudden infant death syndrome. Does the hon. Member agree that more practical support is required? Yes, we need research, but we also need there to be practical support: bereavement nurses, dedicated suites in hospitals, and counselling support post the death of the child.

[Andy MacNae]

Yes. I will touch on that in a moment. It is part of a wider picture of bereavement support and bereavement pathways nationally. From baby or infant loss to unexplained death in childhood, bereavement services are patchy and in many cases far below the standards that we need to see. We need to make that service universal.

Let us move on to another cause of trauma: child death investigations. This issue is wider than SUDC but has profound impacts. Current national guidelines—the statutory guidance and joint agency guidelines—are built on historical evidence from infant deaths and have not been updated since the new pathways for genetics and cardiology were launched. That is important as it may affect inequity of care and access to these important tests. Guidelines should be updated to reflect new evidence and current pathology timeframes, and any consultation on those updates should include charities such as SUDC UK, which supports families of children up to 18 years old.

From investigation to family support, NCMD data tells us that 30% of all child deaths are sudden and unexpected, and a fifth of families leave A&E with no understanding of why their child has died. While consistency has improved since the last debate, the quality of bereavement support remains deeply uneven, as the hon. Member for Upper Bann (Carla Lockhart) has raised. Families affected by SUDC often experience complicated grief with severe and long-lasting consequences for parents and siblings, and this requires specialist support. The NIHR-funded Quintet project and the wider strategic partnership for sudden child death will soon provide evidence-based recommendations for supporting those families. These should be incorporated into a national plan.

To conclude, what is lacking is not expertise nor compassion; rather, it is co-ordination and leadership. I am calling for a Government-led national plan for sudden unexplained death in childhood. That would turn the issues that I have raised into strategic objectives with clear timelines, milestones and measurable outcomes. It should be developed alongside families, clinicians and researchers, and report back to Parliament every two years. Such a plan would send a powerful message: these children matter, their deaths are not footnotes, and unexplained does not mean unimportant. My thanks to Brian Topping, Nikki Speed, the courageous families here today and all those who have worked tirelessly for progress and understanding. I hope that this debate can play a part in delivering that.

[Several hon. Members rose—]

[Sir John Hayes (in the Chair)]

I remind Members to bob—and I can see that they are doing so. A number have indicated that they desire to speak. Given the seriousness and sensitivity of the subject, I want to be able to get them all in. Please bear that in mind when you contribute.

09:46

[Robbie Moore (Keighley and Ilkley) (Con)]

It is a pleasure to serve under your chairmanship, Sir John. I thank the hon. Member for Rossendale and Darwen (Andy MacNae) for securing this really important debate.

There are a few meetings that Members of Parliament never forget. Over three years ago, in January 2023, I met my constituents Cheryl and Darren Midgley for the first time. On Christmas day 2022, Cheryl and Darren put their loving, happy and healthy 16-month-old son Jack to bed. The family had enjoyed the best Christmas, but when Darren, the father, went into Jack’s room the following morning, he quickly realised he had gone. He said that, that day, their “world fell apart”.

Christmas in the Midgley household is never just a day. Jack, with his brother Louis, saw Santa four times. They had had the best Christmas. On Boxing day, when Darren cracked open Jack’s door and went into the room, he said there was perfect silence. He walked over to his son’s cot, but as soon as Darren put his hand on his back, it was cool. From what Darren saw at that point, he knew that his baby son Jack had gone.

Jack was taken to Martin House children’s hospice in Wetherby, where he was cared for in one of its special cooled bedrooms. Darren described the hospice’s services as an anchor for the family. The fact that Jack could stay in one of the cooled bedrooms meant the world. Darren said:

“It was a huge comfort to us to know Jack was being looked after in a bedroom, in his Christmas pyjamas, and the staff would be there to talk to him and put his night light on.”

The family spent five days at Martin House until the post-mortem could take place, but the results were inconclusive.

Since meeting Cheryl and Darren three years ago, I have kept in touch with them, and I have been truly blown away by their resilience and mental fortitude, as well as that of their eldest son Louis. They have worked tirelessly to raise awareness to help others, despite their own grief, including by completing a 127-mile bike ride along the Leeds to Liverpool canal path, raising over £6,000 for the Airedale Hospital & Community Charity, where Cheryl works as a nurse.

I went to see them just this last weekend to catch up with them and check in, and I reiterated to them that I will continue, as their Member of Parliament, to do all I can to raise this issue on their behalf. I was glad to see that they are working united as a family to keep this issue going. Over the last three years, they have worked together to raise over £220,000 in total for local good causes.

Sudden unexplained death in childhood is the fourth leading category of death in children aged one to four in England and Wales. Approximately 40 children are affected by SUDC in the UK each year: one to two seemingly healthy children pass away every fortnight, often going to sleep and never waking up again. As seen in cases such as Jack’s, SUDC does not just affect young children under one year old; more one to nine-year-olds die of sudden unexplained death than as a result of road traffic accidents, drowning or fires.

Published epidemiology data suggests a common profile for children affected by SUDC. Most commonly, they are one to two years old and male. Most worryingly, they die unwitnessed and alone as they sleep. The children’s development is often normal, and their vaccinations are normally up to date.

The death of a child is always a tragedy. Sudden unexplained death in childhood is one of the most under-recognised medical tragedies, and simply not enough support is provided for many of the affected families. Cheryl and Darren received a year of support from the NHS following Jack’s death. They have both sought counselling, and the trauma still lives with them today.

I commend the work done by charities such as SUDC UK and Martin House children’s hospice in providing support for those impacted by sudden unexplained death in childhood. However, we cannot just rely on the good work of charities and volunteers. Despite their efforts, the delays in small charity-funded research into preventing these deaths remains completely unacceptable. One hundred and twenty seemingly healthy children have died without explanation since the last SUDC debate three years ago, which I took part in.

Although we are a long way from prevention, it is vital to develop a well-defined and co-ordinated national plan to gain better insight into the causes of SUDC and to raise awareness. There have been 13,000 publications on SIDS—unexplained deaths under 12 months—versus 100 publications on SUDC. There needs to be a co-ordinated and planned movement because, as I am sure the Minister is aware, a small amount of research will not move the dial. There also needs to be better and longer-term support, available free of charge, for families such as Cheryl, Darren and Louis, to help them to come to terms with the deep sense of loss, anguish and grief that comes with the death of a child.

09:52

[Sarah Hall (Warrington South) (Lab/Co-op)]

It is a pleasure to serve under your chairship, Sir John.

The death of a child is something that no parent should ever have to endure. It is every parent’s worst nightmare. There are no words that can make sense of it, and no pain more unimaginable. For many families, understanding why their child died is an important part of beginning to process their grief. It does not take the pain away, but it can bring some sense of clarity. For families affected by sudden unexplained death in childhood, the answers never come, and that absence—that not knowing; that lack of clarity—brings its own trauma.

SUDC is the sudden and unexpected death of a child between the ages of one and 18, where no cause can be found, even after investigation. It is one of the leading categories of death for children aged one to four in England and Wales. Yet despite that, we still do not know why it happens. We cannot predict it, we cannot prevent it and we do not understand it.

I first came to this issue through a family in my constituency. At one of my surgeries, I met a grandmother whose 13-month-old grandson had died suddenly. The family asked me to share their story in the hope that no other family would have to go through what they have gone through. I pay tribute to the grandmother and her daughter for that courage. At their request, I will not use their names today.

It was an ordinary morning like any other day. Mum put her toddler down for his nap. He was well, and there were no signs of illness—no warning—but he never woke up. That is the reality of SUDC: there is no build-up or explanation, just a moment that changes everything. The impact on that family has been devastating. Alongside the shock and grief came something else: the cruelty of not knowing why. That uncertainty compounded their trauma, and the emotional toll became so overwhelming that it caused severe mental health challenges.

At the very point the family needed care, clarity and compassion, the system repeatedly let them down. They endured 13 months of pain awaiting a post-mortem. They received phone calls from medical professionals without warning, the day after their child died. Professionals used insensitive language, causing further harm. They were given inconsistent and incorrect information. At one stage, they were told the post-mortem had been completed while the child was still in the hospital’s care.

This is not just about delay; it is about dignity. Sadly, that family’s experience is far from unique. Families across the country report similar patterns: long periods of silence followed by a sudden, distressing and poorly timed communication. They find themselves chasing answers when they should be supported, and in some cases having to explain SUDC to professionals. At a time of profound trauma, families are left to carry the burden alone. As is so often the case, those with less financial resources face even greater barriers, whether in accessing counselling, navigating systems or challenging poor care.

Traumatic grief demands trauma-informed care, but too often it is missing. Organisations such as SUDC UK are stepping in to support families, raise awareness and push for answers, but the reality is that they are doing so in the absence of a clear, co-ordinated national approach. That gap should concern us all.

At its heart, this points to a wider issue. SUDC remains one of the most unrecognised medical tragedies we face. Awareness is low, research is limited, and without understanding there can be no prevention. We cannot accept that. Families deserve answers, consistency and to be treated with care at every step. That means a system that is joined up, where knowledge is shared, professionals are trained and support is not dependent on postcode or circumstance.

It also means addressing the workforce challenges we face. There is a severe shortage of paediatric pathologists in this country, and in some regions there are none at all. That is a key reason why families are waiting for months, and sometimes more than a year, for answers. After hearing about my constituent’s experience, I met with the Royal College of Pathologists, and I continue to support its work on recruitment, training and retention.

The truth is that families should not face further trauma because the system does not have the capacity to respond, so I ask the Minister to take four steps: to develop a national plan for SUDC, formulated by Ministers working with officials and scientific experts, as a matter of urgency; to commit to regular reporting at a minimum of every two years, so that we can track progress and hold ourselves accountable; to ensure that clear, accessible information for families is available through the NHS website and other portals, including the NHS knowledge and library hub for professionals; and to move quickly on implementing the recommendations of the paediatric and perinatal pathology workforce report, so that we can achieve quicker post-mortem times and safeguard genetic information and other data to support further research.

This is about every family, in Warrington South and across the country, who are living with unimaginable loss and deserve better from the system around them. We cannot change what has happened to them, but we can change what happens next. On behalf of my constituents, and on behalf of every family who has endured the unimaginable agony of losing a child suddenly and without explanation, I urge the Minister to act now.

09:58

[Clive Jones (Wokingham) (LD)]

It is a pleasure to serve under your chairship, Sir John. I thank the hon. Member for Rossendale and Darwen (Andy MacNae) for securing this very important debate.

First, I would like to recognise the work done by organisations such as SUDC UK that have campaigned on this issue to raise awareness of a very tragic problem. Their work is even more admirable given that so many of the people involved have themselves been affected by SUDC. The loss of a child is one of the worst things that can happen to a parent, but to lose a child and never know why they passed away must be agonising.

Sadly, SUDC is an issue that hits many families across the UK—around 40 children are lost to it every year. At the start of this year, I met two constituents whose son passed away from sudden unexpected death in childhood in 2024. I was struck by their bravery to share their story with me in the face of such tragedy. Hearing about the pain of losing their child and not knowing why, I was struck again by their strength and determination that something needed to be done. In my meeting with them, it was made clear that a serious lack of research and awareness around SUDC has left parents without support or answers.

The parents are calling for research to focus: on detailed post-mortem studies; assessing hidden biological vulnerabilities by focusing on genomic sequencing and family history; neurology and sleep-related mechanisms; and environmental and situational factors. Sadly, most active research appears to be taking place in the US, with very little happening here in the UK. I call on the Government to remove barriers to global research talent coming to the UK, and commit to a decade-long programme of public investment in research and development.

Shockingly, SUDC UK found that just half of the families affected by SUDC were assigned a bereavement key worker. Many parents had distressing experiences when dealing with authorities who offered little support. To increase support for families, Liberal Democrats are calling for the funding for bereavement support payments to be doubled, reversing cuts by the previous Government.

I would like to end by again thanking my constituents for giving me their time to share their story with me and highlighting the clear need for urgent change.

10:01

[Sally Jameson (Doncaster Central) (Lab/Co-op)]

It is a pleasure to serve under your chairship, Sir John. I thank my hon. Friend the Member for Rossendale and Darwen (Andy MacNae) for securing this important debate.

I pay tribute to my constituents Nathan and Fiona Robinson, whose son Alfie tragically passed away. I first met them before I was elected, and I have since met them again and heard their story. I am standing here today to speak on their behalf, and on behalf of other families who have suffered the same. I want to endorse everything that has been said in today’s debate—I will not repeat a lot of it, due to the time limit. I have some specific asks over and above those from SUDC UK, which are incredibly important and which I endorse; but based on Nathan and Fiona’s experience, I want to make sure that their voices and asks are also heard.

First, I ask the Minister to consider working with the Department for Business and Trade on expanding bereavement pay. Fiona had to return to work only two weeks after her son passed away. I know that the Department is looking at bereavement pay very closely as part of its review, but if the Health Minister could also contribute it would add extra weight, emphasising how important that is.

Fiona had to return to work prior to Alfie’s funeral and then had to take just a single day of annual leave to attend it. I think we can all agree that, in such horrific circumstances, that is not an acceptable position. I hope that the Government will consider intervening on this as part of the review. It is so important, because families often have to wait six to eight weeks for a post-mortem. That they should have to return to work before they have had that outcome is something we can no longer accept.

Secondly, as we have heard today, police training can often be quite patchy. We all accept that the police have a job to do, but it is so important that there is a dedicated family liaison officer, so that in the initial moments, hours, days and weeks, families are properly supported by the police. It is important to have someone there who can deliver difficult news and factual information in a sensitive way for the people who are suffering—whether that is graphic coroner’s phone calls or anything else. I hope the Minister will consider working with the Home Office and the Policing Minister to deliver a more holistic approach to how families are treated in the early days and weeks of this unimaginable loss.

Thirdly, Nathan and Fiona relayed to me that they would like to see better training in schools, and even a dedicated teacher or teaching assistant in every school who is trained to support a child if they have a sibling who passes away in these circumstances. Again, that support can be quite patchy, based on whether the school has a teacher, teaching assistant or member of staff who has similar experience or training in dealing with this issue. It is such a small change, which would not cost a lot of money but would make such a big difference to families who suffer with child loss.

Inquest dates have already been covered by other Members, but Nathan and Fiona had to wait more than six months for an inquest, which is completely agonising. That gets added on to the other things I have raised, about the need for better police liaison and having to return to work after two weeks, which means having to continue with life while waiting that long for an inquest. I really think we can do better than that.

I pay tribute to Nathan and Fiona for sharing their story with me, and all the families in the Public Gallery today. It is incredibly brave and it takes a huge amount of strength to share stories like theirs. I hope that the Minister will see today as a new dawn and the start of change in this area, to help families today and in the future.

10:05

[Lincoln Jopp (Spelthorne) (Con)]

It is a pleasure to serve under your chairmanship, Sir John. I thank the hon. Member for Rossendale and Darwen (Andy MacNae) for securing this debate. I also recognise my predecessor as the Member of Parliament for Spelthorne, Kwasi Kwarteng, who sponsored this debate back in 2023.

All Members have expressed that they simply cannot imagine what it is like to be a parent sitting in the Public Gallery or watching our proceedings at home. I am struck by the fact that many of those parents would have been sitting there in 2023, hearing, “This is raising awareness,” and, “We have to get going on this.” They have seen the personnel round here change a bit, and have seen us swap sides, but they are still sitting there, and very little has been done since 2023. I hope the Minister can give us some reassurance about what action can actually happen, so that when we have another Westminster Hall debate in three years’ time, and the same people are sat in the Public Gallery, they are not just looking at a different group of people saying the same things and not doing anything.

I have come here to speak on behalf of two of my constituents, Louis Rogers and Harry Pitts. They cannot be here today because they are dead, and their death is unexplained. We can all forgive the hon. Member for Rossendale and Darwen for doing so, but he said that sudden unexplained death in children is the fourth largest “cause” of death, and of course it is not. He did not mean it, and we all know that. It is just a categorisation, and that is important. I am deeply suspicious whenever I see a pie chart that says, “There is this thing and that thing, and that thing is caused by that thing. Oh, and this huge chunk is ‘others’. We haven’t been able to do that big chunk; that is just ‘others’.” It makes me very suspicious, and suggests to me that someone somewhere is not trying hard enough to make that chunk much more explainable.

There are one or two other things that sudden unexplained death in children is not. It is not sudden infant death syndrome, and the crucial word there is “syndrome”. SIDS is a thing that has been identified; research has been done, preventive measures have been put in place, and deaths from SIDS have been drastically reduced—more power to their elbow. SIDS should show us a way forward about how we might approach this issue with more effort and research. Sudden unexplained death in children also has no respect for persons. It is not to do with socioeconomic circumstances; it is as likely or unlikely to happen to princes as to paupers. It is important that people slay that dragon in their minds.

I want to come to the notion of it being unexplained. It will not come as a massive surprise to hon. Members to hear that I was once in the Army; I have mentioned it on the odd occasion. If I asked someone a question in the Army, they were perfectly within their rights to say, “I don’t know, sir”—but it was a crime if they finished the answer at that point, because everyone in the Army would only say one thing when asked that question: “I don’t know sir, but I will find out.” What we have done hitherto is say to parents, “I don’t know,” and not gone to the crucial second bit of saying, “but I will go away and find out.”

As other hon. Members have mentioned, we need to raise awareness within the NHS—and it would be hugely beneficial if the NHS could do what it said it would do in 2003 and put it on the website—as well as raise awareness in society more broadly. It is awful to think that some parents who have suffered unimaginable and unexplained loss could also suffer stigmatisation within their communities—that they could suffer from suspicion because, obviously, babies don’t just die for no reason, do they?

Equally, it would be hugely beneficial to raise awareness among the police so that they can handle cases far more sensitively. I have heard stories of great practice, but also of not great practice. I also cannot imagine the concern over siblings that must affect so many families affected by sudden unexplained death in childhood. Will the Minister commit to coming up with a plan for sudden unexplained death in childhood? To begin with, we have to get a plan, because without a plan, we cannot change it. Once someone says, “We have got a plan,” we are beholden to report back at a periodicity—let us say, every two years—to see whether we are doing what we said we would.

I have mentioned it already, but the NHS website and raising awareness more broadly is equally important. We in this House and in this Chamber should not be satisfied with one Westminster Hall debate. We have raised awareness generally. We really owe it to our young children—to Louis and Harry and all the other children whose deaths are unexplained—to do the work to give an explanation and reduce the number of deaths in the future.

10:11

[Mr Connor Rand (Altrincham and Sale West) (Lab)]

I commend my hon. Friend the Member for Rossendale and Darwen (Andy MacNae) for securing this debate and speaking so powerfully, as he always does, about loss on these issues.

Frankie James Grogan lived in my constituency. He was three years old, and would have been 10 in January. Frankie was adored by his family, and everyone who met him said the same thing: that he was a joy to be around—always smiling, always laughing and always making his mum and dad proud. Frankie loved giraffes, as he loved most animals, and the only thing that could compete with them for his attention was his Lego.

Frankie was a special little boy, but in many other ways he was a normal little boy, like the millions of other toddlers who have just started nursery and have everything in life to look forward to. Then, one night, Frankie went to sleep and did not wake up: no explanation, no answers and, frankly, very little support—just an unimaginable loss. How does any parent come to terms with that? That is a question most of us cannot bring ourselves to even think about, but my constituent Sarah, who is with us today, had to face that reality. In a completely inspiring way, she turned her trauma into a movement for change, and working with SUDC UK she created Friends of Frankie, a brilliant local charity with a giraffe for its logo. The charity is dedicated to not just Frankie’s memory but his legacy, and that is the key point I want to raise today: Frankie’s legacy. When I have spoken to Sarah, she has articulated it better than I ever could: Frankie’s role now is to save other children and other parents too.

We need to make sudden unexplained death in childhood predictable, because when we can start to predict it, we can start to prevent it. First, as other Members have this morning, we need to recognise the scale of the issue and that these are not just isolated tragedies. We lose almost two children a fortnight to SUDC—in other words, more children than we lose to traffic accidents, fires and drowning. We work to keep children safe from those things—we have speed limits and fire alarms, and we teach children how to swim—but we do little to talk and think about or to research sudden unexplained death in childhood.

That is why we need action. As Members on both sides of the Chamber have discussed, we need a national plan with clear milestones for success that everyone can be held accountable for and that is based on research informed by quicker post-mortems, genetic data gathering and consistent, high-quality reviews. We can then start to understand, predict and prevent these deaths.

Take, for example, the link between febrile seizures and unexplained death. Frankie suffered 12 observed febrile seizures, yet the care he received for them was not informed by detailed research. One paramedic googled what a febrile seizure was in front of Sarah, shortly after Frankie had had one. I say to the Minister that we would not accept that lack of information—that ignorance—in any other part of children’s medicine, and we should not tolerate it when the consequences can be as tragic as these. Other Members have talked about how effective research has been when dealing with SIDS. If we had the same success here, we could save the lives of 32 children a year, which is surely as good a call to action as anyone can make.

It is great to see the Minister here so early in her new role, and I warmly welcome her to it. I urge her to meet SUDC UK as soon as possible and to pull the scientific experts together to agree a national plan that provides safety for every child and answers for every parent. That must be Frankie’s legacy—it is what Sarah and all friends of Frankie deserve.

10:17

[Jim Shannon (Strangford) (DUP)]

It is a pleasure to serve under your chairship, Sir John. I thank the hon. Member for Rossendale and Darwen (Andy MacNae) for raising this issue and pay tribute to him for his bravery in exposing his own devastating grief at the loss of his precious daughter to try to bring about the change in research and support that is so desperately needed.

This is an incredibly difficult subject; indeed, it is often whispered about, if it is spoken of at all. SUDC is a tragedy that strikes without warning, leaving families across our communities in a state of profound, unanswered grief. Over the years, I have met too many families whose joy has gone, and my heart aches for them as well.

In Northern Ireland, we pride ourselves on our close-knit communities, our resilience and our ability to respond to things in a family way. However, when a family faces SUDC, that resilience is tested by the unique pain caused by having no answers. Unlike sudden infant death syndrome, which affects babies under one year old, SUDC claims the lives of children aged from one to 18.

I will look at the reality at home and, as I always do, give a Northern Ireland perspective. According to recent data from the Lullaby Trust, although the number of children who die is small, the impact is immeasurable and is felt not only by the parents and siblings but by the extended family, in schools and churches, and throughout the community. When that stone hits the water, the ripples go far.

In 2023, 16 unexpected deaths of babies and young children were recorded in Northern Ireland. While thorough investigations may eventually find explanations for many of those, those that remain unexplained leave a permanent void. Northern Ireland has historically seen the highest infant mortality rate in the United Kingdom, and it is currently at 4.2 deaths per 1,000 live births. The trends are quite worrying. Although SUDC is distinct from infant mortality, those figures highlight the broader, urgent need to prioritise child health and research in Northern Ireland.

For children aged one to four, SUDC is one of the leading causes of death across the United Kingdom, often ranking higher than traffic accidents or fire, yet it remains one of the most under-recognised medical tragedies of our time. When we ask the Minister for help, that is what we are asking about.

[Carla Lockhart]

Will my hon. Friend join me in commending Dr Julie Rankin, a consultant in emergency medicine, who has been instrumental in working with the Williamson family from my constituency to create a bereavement suite in Craigavon Area hospital in memory of those little children who have died suddenly in unexplained circumstances? As we speak today, they are actually at a research event at Queen’s University Belfast, which demonstrates that Northern Ireland is advancing these things for families who are impacted.

[Jim Shannon]

My hon. Friend is absolutely right. She and I, and probably everyone else in the Chamber, would recognise the importance of parents having someone there to comfort them when such an awful tragedy takes place, and it is vital that my hon. Friend underlined that. One of my three asks of the Minister—which I will come to shortly—will be for research, and Queen’s University is to the fore on that.

For a child aged one to four, SUDC is one of the leading causes of death across the United Kingdom, yet it remains one of the most under-recognised medical tragedies. That is really the point I want to make: this is a medical tragedy and we are not doing enough, so we need to do more, as I think everybody has said.

The unexplained nature of these deaths is perhaps the cruellest part. Families go to wake their child for school or for a day of play, only to find the unthinkable. The Northern Ireland Statistics and Research Agency continues to track these tragedies, noting that they can affect any family, regardless of background.

But we are not here today simply to acknowledge or indeed to remember; we are here to advocate for change. When he set the scene, the hon. Member for Rossendale and Darwen was very clear about what he wanted, which is probably what we all want. First, we need more research, and that is one of my three asks of the Minister. I am very pleased to see her in her place; it has been a pleasure to work alongside her on many subjects over the years we have been here, and I wish her well—I wished her well last time and I wish her well again—in the role she plays. We need more research in order to move beyond the unexplained and find the “why” of the problem. Secondly, we need better support for families navigating the complex joint agency response that follows a sudden death. Thirdly, we need something that today’s debate will help to raise: awareness.

Those are my three asks, so that no parent in Glasgow, Newtownards, Swansea or Somerset feels that they are the only one in the world that this has happened to. We owe it to the children we have lost and to the families they have left behind—[Interruption.]

[Lincoln Jopp]

Will the hon. Member give way?

[Jim Shannon]

indicated assent.

[Lincoln Jopp]

As ever, the hon. Member is making an incredibly powerful speech. I know he feels these things incredibly strongly. I am sure we are all looking forward to his closing remarks.

[Sir John Hayes (in the Chair)]

Jim, why don’t you bring your remarks to a conclusion?

[Jim Shannon]

I will do that. Let us work together to make sure every child has the chance to grow up, and every family has the answers they deserve. While we do not mourn as those do who have no hope, I always treasure the fact that Jesus wept with Mary in her grief, even though he had a plan. God has a plan; sometimes we do not understand what it is, but we have to trust. So we weep together and we hold on to the hope we have. Today, we express our determination to do more for those grieving in our families, in our towns and in our great nation of the United Kingdom of Great Britain and Northern Ireland.

[Sir John Hayes (in the Chair)]

I call Michelle Welsh. Michelle, I want to start the winding-up speeches at around 10.30 am.

10:24

[Michelle Welsh (Sherwood Forest) (Lab)]

It is a pleasure to serve under your chairmanship, Sir John. I thank my hon. Friend the Member for Rossendale and Darwen (Andy MacNae) for securing this important debate.

There can be no greater devastation than the death of a child, but for many families the pain is made even more unbearable by one word: unexplained. When a child dies without answers, the grief does not settle. It lingers, it questions and it haunts. Parents are left asking themselves the same questions over and over: “What happened, and why don’t we know?”

I have spoken to a local family living with that reality—a family who are not just grieving, but searching for answers, understanding and peace. When this happens, families encounter a system that is broken and fragmented, investigations that take too long, communication that is unclear and support that falls away when it is needed the most. We must do better.

We need a national plan and improved data collection to identify patterns and risk factors. Every unexplained death in childhood must be treated with the seriousness it deserves—not just as a case to be closed but as a life that mattered, with a family who need answers. That means timely, thorough and transparent investigations; clear communication with families at every stage; ensuring that bereavement support is not an afterthought but a core part of care; and providing training for healthcare professionals, coroners and the police. This is not just about understanding why a child died; it is about helping families with such a tragic loss.

We owe it to those children and families to learn everything we can, to be honest about what we find and to ensure that no parent is left alone in their search for answers. We can, and must, ensure that no family is left in the dark. When a child dies, the silence that follows should never be from a system that was meant to provide the answers.

10:26

[Alison Bennett (Mid Sussex) (LD)]

It is a pleasure to serve under your chairmanship, Sir John. I thank the hon. Member for Rossendale and Darwen (Andy MacNae) for his brilliant opening speech setting out the frame of our conversation.

I am mindful of the families in the Public Gallery, who have had unimaginable loss and who represent just a fraction of the families across the United Kingdom who have gone through this tragedy. I also know that some hon. Members who have met families who have lost a child through sudden unexplained death in childhood could not be here today, and they have asked me to extend their thanks to SUDC UK for the advocacy and support it has provided for those families.

As hon. Members have said, losing a child is one of the most devastating experiences a parent can face. For parents to lose a child suddenly and to not know why is even harder to comprehend, leaving them without answers and wondering endlessly whether anything could have been done. That is a burden no parent should have to carry alone, yet that is the reality for families affected by sudden unexplained death in childhood.

As we have heard this morning, the experience for families is far from what we would hope. According to research by SUDC UK, only about half of families who experienced an unexplained child death were assigned a bereavement key worker. Many parents reported distressing and at times traumatic experiences when dealing with authorities in the aftermath of their child’s death. At the very moment families need compassion, clarity and support, too many are instead met with confusion, delays and even suspicion. We must do better than that.

Of course, that is a reflection not of the incredible staff across the NHS and other services but of a wider system that is failing. When a child dies unexpectedly, there is meant to be a structured review process. Families should be guided, supported and treated with care and dignity. Not only do more than half of NHS areas in England not have a specialist bereavement nurse available to visit parents after such a death, but as the hon. Member for Rossendale and Darwen set out, there is a shocking shortage of paediatric and perinatal pathologists across the United Kingdom. I am going to spend the next few minutes focusing on that often overlooked profession.

I recently met the president of the Royal College of Pathologists, Dr Bernie Croal. He explained that with vacancies for this specialism running at 37%, bereaved families are suffering. Let me set out the scale and consequences of the situation. In December last year, there were only 52 paediatric and perinatal pathologists, or PPP consultants, working in the United Kingdom. There were no PPP consultants working in Northern Ireland, none in the south-west and none in the midlands. The royal college says that that has led to

“total service collapse in these areas.”

In Northern Ireland, there has not been a paediatric and perinatal consultant in post since 2019. For children from Northern Ireland, post-mortem examinations are being carried out on an interim basis at Alder Hey children’s NHS foundation trust in Liverpool. Bluntly, if a baby or child needs a post-mortem, their body must be transported from Northern Ireland by ferry or plane to England.

Right across the UK, the lack of PPP consultants is having a harrowing effect on bereaved families, with one in five families having to wait six months or more, and some waiting more than 12 months. This matters because the support and expertise of paediatric and perinatal pathologists can give families answers where they exist, and in many cases, a diagnosis can help to screen other family members who might be affected by a certain condition. They can also potentially give information that aids treatment should a family decide to try for another baby.

I have three questions for the Minister. The first is on the root causes; namely, the shortage in the paediatric and perinatal pathology workforce. Given that the royal college recommends that training posts should be expanded to 37 places by 2030, what concrete, funded plans do the Government have to deliver those to ensure a sustainable pipeline of paediatric and perinatal pathologists?

Secondly, on the delays affecting families, will the Minister commit today to bringing forward a plan to improve the resilience of paediatric pathology services so that bereaved families receive timely answers when they are trying to understand the shocking and unexpected loss of their child?

Thirdly, on investment in the wider pathology workforce, what investment will be made in the multidisciplinary workforce, such as biomedical scientists and pathology technicians, to ensure that paediatric pathology services can function effectively? Even with more doctors, services fail without the supporting team.

A sudden unexplained death in childhood is truly shocking; it happens to around 40 children each year. Those deaths will never be explained, as things stand, and could not have been anticipated, but we have a moral obligation to make sure that what we can control—the right people with the right training in the right places—is there for families. Paediatric and perinatal pathology services is just one specialism where there are gaps in provision, and as we have heard from other hon. Members, there are other specialisms, too. More can be done, and so more must be done.

10:33

[Dr Caroline Johnson (Sleaford and North Hykeham) (Con)]

It is a pleasure to serve under your chairmanship this morning, Sir John. I declare an interest as an NHS consultant paediatrician and as a member of the Royal College of Paediatrics and Child Health. I congratulate the hon. Member for Rossendale and Darwen (Andy MacNae) on securing today’s important debate.

The death of a child is every parent’s worst nightmare. It is perhaps even more horrific when such a death happens suddenly, without warning and when no explanation can be found. I would like to convey my condolences to the family of Frankie Grogan, to Cheryl, Darren and Louis, to Nathan and Fiona, to the Rogers, Pitts and Williamson families, and to all other families grieving such a profound loss.

Childhood death is thankfully rare. However, more than 3,400 children aged nought to 17 die in England each year, and in around 40 cases the death cannot be explained. Parents are left with more questions than answers. Why has this happened? Why now? Since many cases are unwitnessed, did the child suffer? What was the cause? Could it have been prevented? Will it happen again to a sibling or a future child?

I want to focus on two questions today: how do we identify the cause of death in more cases? And how can we use that information to prevent future deaths? We can do that because we have done it before. In the 1980s, 2.35 children per 1,000 live births died within between a week and two years. That has been reduced by over 90%. The key factors were research, the Back to Sleep campaign, general safe sleeping advice and the avoidance of cigarette smoke. There is more to be done, but with the right plan, we have shown that lives can be saved.

I would first like to acknowledge some progress, including through the work of Baroness Kennedy, whose 2004 report and subsequent work with the Royal College of Pathologists and the Royal College of Paediatrics and Child Health led to the introduction in 2008 of a standard set of clinical samples, called Kennedy samples, that must be taken in the event of a sudden child or infant death. In most of the trusts I have worked in, there is now a box in each emergency department with all the samples and a list of what needs to be taken so that nothing is missed in any cases.

Child death overview panels, which were also established in 2008, are multidisciplinary panels to review the deaths of all children aged nought to 17. That process was further updated in 2018. When a child dies, all registrars must inform the child death overview panel, of which there are currently 58 in England. An expected death goes to a review meeting to look at the detail of the causes and whether it can be prevented in the future. In an unexpected death, there is an urgent joint agency response meeting including police and education, and a review meeting takes place later. All that information then feeds into the national child mortality database, set up in 2019, which is there to spot patterns and aims to prevent future deaths. It produces several reports each year with detailed guidance for Government on how deaths can be prevented.

It might be helpful to discuss an example. In December 2024, the NCMD published a report on child deaths due to asthma or anaphylaxis. I commend those who produced that report, including my medical colleague Dr Emilia Wawrzkowicz. They found that certain factors increased the risks of asthma or anaphylactic death in children, and that milk was most likely to trigger a fatal reaction. They found problems with auto-injectors that were forgotten, out of date or not with the child, or that the training had not been adequate, particularly in schools. They found issues with indoor air pollution, a failure to recognise life-threatening asthma and that children did not have asthma action plans.

Work has been done in many of those areas, which will have saved children’s lives since. My hon. Friend the Member for Rutland and Stamford (Alicia Kearns) has been promoting Benedict’s law, which hon. Members voted for just last week, to ensure that children at school are protected from anaphylaxis. Can the Minister update the House on progress in delivering the recommendations of the national child mortality database’s report? At the moment, the Government are not obliged to produce a response to the recommendations of the national child mortality database’s reports, unlike many other reports, and I think they should be. A more recent report was on the effect of consanguineous marriage on the rate of child deaths. It would be helpful to have Government responses to show that those reports are being read and acknowledged, and that the work that has been done is leading to change.

I worry about the effect of the imminent abolition of NHS England on the national child mortality database’s work. Child death overview panels do very good work in investigating each child death individually, but ICB funding cuts mean that not only bereavement staff, but investigatory staff, are being cut. The mergers of ICBs mean that local knowledge may be lost as the areas become very large. That is not in line with the statutory guidance in the Children Acts. Can the Minister update us on the Government’s plans in that area?

Whole genome sequencing offers an increased likelihood of finding children’s causes of death, but there is a long wait for results; it can take six months. Families are in great distress while they wait for those results, as we have heard. The Government suggest that they want to expand genome sequencing work, but it has already taken a very long time and the workforce plan has not yet been published. What are the Government doing to make sure we have the right staff and the right capacity to deliver that ambition?

Skin biopsies can be very helpful, particularly in diagnosing inborn errors of metabolism, which in children can cause illness and death, but they are not yet available everywhere. Can the Minister update the House on what is being done to roll out these tests so that, where possible, all causes can be found?

The Liberal Democrat spokesperson, the hon. Member for Mid Sussex (Alison Bennett), mentioned the fact that there are not enough pathologists. That is very important because it causes distress and delays, including to post-mortems, and it means that families have to wait much longer for results. Also, some children tragically die overseas, as happened to one of my patients relatively recently. In such cases, SUDC panels rely on being told about it and find it more difficult to investigate. Does the Minister have any comments on that?

Hon. Members talked about research. The Lullaby Trust has been doing gene sequencing on tissue samples from children who died of sudden unexplained death. In four of 20 cases, the tests were able to find evidence of infection, so there is hope that people who have been bereaved by a sudden unexplained death in the past can, with more modern techniques and retained tissue samples, discover the cause in the future. However, that will only happen if the research takes place. This research is charitably funded. We heard about the charity-funded research being done in Bristol, but the Government also need to fund research so that we get as much information as possible to prevent these deaths.

Lastly, I will talk about bereavement support. We have heard about the vital role that it plays in helping families, including siblings, in their time of grief, but I have heard about cuts to that as a result of mergers and funding changes to ICBs. In one case, a phone line has been taken away, meaning that families who want to approach bereavement support have to email and wait for a response—I can see hon. Members frowning. This is clearly not good enough, so I urge the Minister to look carefully at it and take the time to find out what is going on in each ICB regarding the commissioning of these services, so that we are not leaving families without the support they need during the most awful time they could ever experience.

What we have heard today is a call for action. We have heard a call to explain the unexplained, support families better, improve on research and, ultimately, to prevent the deaths of children.

[Sir John Hayes (in the Chair)]

In calling my long-standing friend, Mrs Hodgson, I let hon. Members know that she has agreed to leave a couple of minutes at the end for Mr MacNae to wind-up. In turn, he is about to agree to leave a couple of moments at the end for me to move the motion.

10:42

[The Parliamentary Under-Secretary of State for Health and Social Care (Mrs Sharon Hodgson)]

It is a pleasure to serve under your chairmanship, Sir John. I thank my hon. Friend the Member for Rossendale and Darwen (Andy MacNae) for securing a debate on such an important issue. I am grateful to him for opening the debate during SUDC Awareness Month, a time dedicated to remembering children who have died suddenly and without explanation.

I also thank my hon. Friend for sharing Frankie’s story; it was profoundly moving to hear about it, as it was to hear all the contributions this morning. I want to acknowledge the courage of Frankie’s family in turning such devastating loss into a call for understanding and change. Frankie was clearly a much-loved little boy, as are all the children who are lost to SUDC, and no family should have to live with unanswered questions about why their child died. I am grateful to Frankie’s grandfather and SUDC UK for their determination in making sure that unexplained never means unexamined. I recognise the importance of the leadership, co-ordination and clarity that they are asking for.

It is important to me that we strengthen our understanding of SUDC and ensure that families can access the right support when they need it. This Government set out an ambitious commitment to raise the healthiest generation of children ever. To achieve that, we must ensure that families receive the best support and advice on all matters relating to child health, including SUDC.

I thank all hon. Members for their powerful and moving speeches and interventions today. I turn to some of the specific issues raised. I recognise the calls from a number of Members for a national plan. That is why we are strengthening pathology services, ensuring high-quality bereavement support and a growing research base. As that works progresses, we will continue listening to families, clinicians and researchers about where further improvements are needed.

My hon. Friend the Member for Doncaster Central (Sally Jameson) asked me about bereavement leave, and made a very strong case. I will commit to raising that with Department for Business and Trade Ministers as a priority. I will also raise the issue of police and paramedic training, which my hon. Friend the Member for Altrincham and Sale West (Mr Rand) raised, with the relevant Departments and Ministers. Both my hon. Friends raised very important issues.

My hon. Friend the Member for Warrington South (Sarah Hall) asked about the implementation of the recommendations in the paediatric and perinatal pathology workforce report. I will write to her on that, and on the four points she called for in particular.

I thank my hon. Friend the Member for Rossendale and Darwen for highlighting that information on SUDC was taken down from the NHS website. Parents who have lost a child to SUDC should be able to access the advice and support that they need. I have already asked my officials to investigate that and explore opportunities to include signposting on the NHS website.

No family should ever have to experience the loss of a child, as so many of us in this Chamber today have. It is vital all of us have access to compassionate and timely support when the worst happens. The child death review process ensures that every child’s death is understood sensitively and thoroughly, and is vital in helping families to understand what happened to their child. While bereavement support is commissioned locally to reflect the needs of each community, there is clear national best practice that sets out that every bereaved family should have a key worker to guide them through a time of inconceivable loss and heartbreak. That key worker helps to provide clarity, information and kindness, and helps families to access further sources of support where needed. We also encourage anyone seeking help to contact their GP, who can also guide them to appropriate services.

I also want to thank some of the wonderful organisations and charities across the country, such as SUDC UK, the Lullaby Trust, Cruse Bereavement Support and the Good Grief Trust, which provide exceptional support to families experiencing this devastating loss. Alongside that, the National Bereavement Alliance has published updated voluntary service standards to support continuous improvement in the quality of care. Putting the needs of children and their families first is at the heart of everything I will do in my role as a Minister. We will continue working with partners to ensure that bereaved families receive the compassion and support they deserve.

As we have heard today in detail, pathology waiting times can add to the distress experienced by families at a critical time when they need answers quickly. As was highlighted by the hon. Member for Mid Sussex (Alison Bennett), who speaks for the Liberal Democrats, there is a nationwide shortage of paediatric pathologists in England and Wales, which can affect the time taken to complete pathology testing following a coronial post-mortem. To address that, NHS England has launched a national programme to strengthen perinatal and paediatric pathology services. The Government have made more than £2 million-worth of additional funding available to increase post-mortem capacity. That has increased training posts and the number of trainee doctors and new pathologists.

Alongside that, genomic testing for SUDC is available through the NHS genomic medicine service. Decisions about whether genomic testing is appropriate are made after the post-mortem and through careful discussions with specialist multidisciplinary teams. NHS England closely monitors how genomic testing is delivered across the country, so that it can spot where services differ and work with local teams to improve services. That helps to ensure families can benefit from high-quality, consistent services where they live. Taken together, these steps will help to ensure that families receive timely, high-quality investigations at moments of profound difficulty, while supporting the workforce who deliver this critical service.

As hon. Members have said, SUDC remains an under-researched area, and I agree that we must do more to deepen our understanding. The Government remain open to funding high-quality research into SUDC through the National Institute for Health and Care Research, and we welcome applications on any aspect of child health, including SUDC.

For example, I thank my hon. Friend the Member for Rossendale and Darwen for raising the great work of Bristol University in hosting the national child mortality database and child mortality analysis unit. The Government’s support for the national child mortality database has already made a meaningful difference by bringing together national-level data on all child deaths in England and allowing a far greater understanding of deaths in children over the age of one.

I am encouraged to see that, building on that foundation, the University of Bristol has secured funding from SUDC UK for the Pioneer SUDC study. This will help to shape future research questions and contribute to deeper learning in this under-explored area. As this growing body of evidence develops, it will allow experts to identify where research can have the greatest impact and where gaps remain, including in areas such as febrile seizures. I thank my hon. Friend for raising that area today, because it is definitely one we need to look at.

[Jim Shannon]

On research, I will make a plea for Queen’s University Belfast, as I always do in such debates, because it does incredible work. It is not the only university that does so; many universities across this United Kingdom do so as well. Will the Minister engage with Queen’s University Belfast and other universities to ensure that the necessary research can be achieved and thereby save lives?

[Mrs Hodgson]

Yes. I thank the hon. Member for his very moving speech; he often moves me to tears in moments such as this. I will take that away, and ask my officials to look at the work of Queen’s University Belfast, because he makes a very important point.

The shadow Minister, the hon. Member for Sleaford and North Hykeham (Dr Johnson), made a couple of points. I will write to her on the Government’s responses to recommendations, because it is a valid point and one that we should be aware of in future. On the point about ICBs making services more effective by cutting duplication and making sure we have the right people in the right places to deliver quality services, that is something I will also be paying particular attention to, as the Minister with responsibility for children’s health.

[Dr Caroline Johnson]

My point was less that mergers of ICBs would make services more efficient, but more that that is leading to services being cut, which may make them less good, and that the principle that CDOPs look at the local area is diluted if the local area becomes very large.

[Mrs Hodgson]

I take on board what the hon. Lady says. When I write to her on the point about responses to recommendations, I will elaborate further on that point, having made sure that I have understood it correctly.

[Lincoln Jopp]

The Minister is very generous with her time, and I am grateful to her for that. She welcomed the research funded by the SUDC UK in Bristol, but I do not think we have heard any commitment to Government-funded research into this area. Will she clarify whether she will take that forward?

[Mrs Hodgson]

I think I may have mentioned some Government-funded research, but I will commit to write to the hon. Gentleman on that point, rather than try to guess what I may have said.

In closing, I again thank my hon. Friend the Member for Rossendale and Darwen for bringing forward this debate, and all hon. Members for their heartbreaking speeches. Those of us here today who have had the privilege of taking part in this debate will never forget them and the names of the children either: Frankie, Miranda, Jack, Louis and Harry—as well as all the other precious children who we have lost to SUDC. The names, families and circumstances mentioned today are all in Hansard now forever. I want to thank all the families in the Public Gallery for being with us today and for their campaigning for change, research and better support.

A number of Members here today recognise that drive because it is what drove us here ourselves. I take on board the plea from the hon. Member for Spelthorne (Lincoln Jopp) to ensure that we see progress and do not all find ourselves back here in a few years’ time having the same debate. We will continue to work with clinicians, researchers, charities and—above all else—families to deepen our understanding, strengthen the support available, and ensure that every child’s death is fully examined and that their life is never forgotten.

[Sir John Hayes (in the Chair)]

Thank you, Minister. Before I call on Andy to wind up, I echo the thanks to all Members for contributing to this important debate. I also particularly thank all those who have taken time to attend in the Public Gallery. Thank you so much.

10:56

[Andy MacNae]

I thank everyone who has contributed to this debate. I thank the shadow Minister, the hon. Member for Sleaford and North Hykeham (Dr Johnson), for bringing her depth of professional experience. I also thank the Minister for her comprehensive response to the points raised.

I want to reflect on a couple of the issues that were raised. First, I thank the hon. Member for Spelthorne (Lincoln Jopp) for taking me to task on describing SUDC as a cause of death. He is absolutely right: it is not; it is simply a category of the unknown. That is worth reflecting on, because it puts into context the request from my hon. Friend the Member for Altrincham and Sale West (Mr Rand) that we focus on understanding, predicting and preventing. When we combine that great unknown with that appeal to simply understand, we recognise the challenge, but also the imperative to make progress in this area. It is clear that there is an absolute consensus across both sides of the House in calling for a plan and the prioritisation of this issue. It was good to hear the Minister recognising the importance of that.

Bereavement support came up several times. We have so much terminology: bereavement support, bereavement care and longer-term mental health support. The moment at which a family needs support to deal with the trauma of loss can vary greatly. It can be a day, week or year after the loss and having the right support at the right time remains absolutely vital. I very much hope and believe that it is something that the parent services and maternity safety investigation and the ongoing taskforce will grasp as a priority in their work.

To reflect on some of the commitments made by the Minister, I think she has recognised that some things can be done quickly and effectively—simply getting good information about SUDC up on the website seems to be an obvious imperative that we can be acting on. However, Members have raised a range of opportunities, in particular the opportunity to build on the charity-funded research done so far and move it into Government-funded research. I would be grateful if the Minister agreed to meet with me and SUDC UK to discuss how we can take this debate forward, because as hon. Members have said, it cannot stop here. This must be the start of an ongoing process where we build understanding, take action and get real change to create a genuine legacy—a legacy for Frankie and all the families affected.

Again, I finish by thanking everyone in the Public Gallery for being here. It really matters, and I am so grateful for your presence.

Question put and agreed to.

Resolved,

That this House has considered Sudden Unexplained Death in Childhood.