Sudden Unexpected Death in Childhood

Jim Shannon Excerpts

Tuesday 24th March 2026 Westminster Hall

[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.

--- Later in debate ---

[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.