SUDC UK statement in response to the Westminster Hall Debate on Sudden Unexplained Death in Childhood (24 March 2026)  

As SUDC families gathered in Westminster Gardens ahead of the second Parliamentary Debate on SUDC there was a distinct air of solidarity and determination – witnessing parents, siblings and grandparents alike united in their grief, hugging, chatting and supporting each other was deeply moving.  

At the Westminster Hall Debate on 24 March MPs, families, and professionals came together with the same resolve to move the discussion on SUDC forward. With a packed viewing gallery, some had to watch via monitors in the corridors, and as MPs shared moving stories of children from their constituencies, everyone in the room felt the weight of their words. What is required now is real follow through via the identification of clear action points, and a commitment to delivering on the goals discussed. 

 Andy MacNae MP opened with a powerful message: “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.” Lincoln Jopp MP added, “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, we are not just looking at a different group of people saying the same things and not doing anything.” 

MPs across parties spoke articulately and passionately on behalf of their constituents, and were in clear agreement on what needs to happen next: 

1. A national plan with clear milestones and regular reporting every two years 
   Andy MacNae MP, who secured the debate in memory of Frankie Grogan, urged the Government to lead with a coordinated national plan. The Minister recognised that there was “absolute consensus across both sides of the House” regarding the need for this. 
   
   
2. Government-led SUDC research  
   Jim Shannon MP and Connor Rand MP stressed the need for more research to prevent future deaths and the potential to save lives. The Minister acknowledged that SUDC is still under-researched and agreed that more must be done. The importance of building on charity-funded work and moving towards Government funded research was also acknowledged.
    
3. Consistent, trauma-informed and timely information and support for families 
   Sarah Hall MP spoke about the trauma caused by the absence of an explanation “the answers never come, and that absence… brings its own trauma.” She called for clearer information and quicker post-mortem timelines. Dr Caroline Johnson MP highlighted long waits for whole-genome sequencing and the need to retain the child death review workforce if we are to understand why children die.   

 SUDC UK will now engage with the Government and to clarify next steps. Although key issues were acknowledged during the debate, any commitment regarding how to move forward remained unclear. It had been hoped that a public and proactive offer to meet, alongside defined timelines for action in addition to confirmation that the prevention of SUDC is a departmental priority would be the outcome of the discussion. 

Encouragingly, Andy MacNae MP has driven forward discussions and we already have a date arranged with the Minister to review an SUDC UK-drafted plan and agree next steps. This meeting should result in a clear national plan for SUDC which includes specific goals and accountability to help realise a pathway towards a future free of SUDC.  We realise that every family we support carries a story that should have had a different ending and we recognise that very child matters and should always be remembered. 

SUDC UK will continue to stand alongside the families we support as well as those who sadly join us as their children die suddenly and with no explanation in the future. The significance of what was shared in Westminster Hall this March will not be forgotten, and we are committed to maximising the opportunity to engage with policy to makers to ensure that the changes highlighted above are realised. 

The Minister closed the session with a commitment to continue working with families and professionals to strengthen understanding, provide support and to focus on deeper investigations into the medical tragedy that is SUDC. The Parliamentary Under-Secretary of State for Health and Social Care added, “I want to acknowledge the courage of Frankie’s family in turning such devastating loss into a call for understanding and change.”

SUDC UK echo that recognition and thank all those who contributed to this important moment. It must now lead to meaningful progress towards making Sudden Unexplained Death in Childhood predictable and preventable. 

Previous advocacy and events for SUDC

In this summary we are pleased to share the videos of the presentations, professional pictures of the event and suggested actions – how MPs, professionals and our SUDC UK community can help with impactful next steps.

The Speeches

Please click on the images below to listen to the presentations from the day.

The speakers at the event included Rt Hon Kwasi Kwarteng MP, Dr Nikki Speed – Co-founder and CEO of SUDC UK, Dr Joanna Garstang – Consultant Paediatrician and Chair of the Association of Child Death Review Professionals (ACDRP) and SUDC UK scientific advisor, and Vicky Sleap – Deputy Director of the National Child Mortality Database (NCMD).

Networking and collaboration

After the speeches, the attendees networked and were able to speak with our SUDC Ambassadors – a number of bereaved parents identifiable by the badges they wore bearing photos of their children affected by SUDC.

Thank you

Thank you to our event sponsors Co Create and Service Graphics, and our charity volunteers who supported this event, Julia Rogers and Vanessa Grywacz, Art of the Possible and Calvermont PR.

Thank you to Buttercup Photography for all of the professional photos captured on the day of our Parliamentary Reception.

The recommendations discussed in this debate are supported by the National Child Mortality Database SUIDC report that was published on the 8th December 2022 and co-authored by SUDC UK.

After attending the debate with other team members and affected families, SUDC UK Chief Executive, Nikki Speed, shared:

“Listening to MPs share the experiences of SUDC-bereaved families from across the country was very emotional and a huge milestone for us all.

Rt Hon Kwasi Kwarteng MP was clear in the questions he asked the Minister at this first ever debate on Sudden Unexplained Death in Childhood. All MPs in attendance supported the key issues, sharing the heart-breaking stories of their own constituents and reiterating a clear need for SUDC research, medical education and public information. They quoted facts about the devastating impact of SUDC and the limited research compared to SIDS.

The feeling in the room was that far too little had been done for too long and that this was the beginning of a movement to collaborate to prevent future tragedies.

SUDC UK left the debate feeling like this was a critical, very positive step forward. We hope the commitment to research, education and public information from the Minister for Primary Care and Public Health will help changes be made with urgency. We welcomed other points raised by MPs such as the importance of SUDC nurses and the impact of SUDC on siblings.

The words ‘Sudden Unexplained Death in Childhood’ have never been spoken before in Parliament and SUDC is now on the government agenda. We hope meaningful actions and more debates will follow. This was an important day in history for children and we are so grateful to everyone who has supported this progress.”

Thank you to everyone once again for your support – it made all the difference!

Thank you so much for your support!

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