- SUDC UK

QUINTET (Active, project started December 2024)

IneQUity in end of life care for children: Investigating experiences and families’ Needs after sudden and unexpecTEd deaTh in children and young people.

The Project

Each year around 3,000 children die in England and Wales and a third are sudden and unexpected – accidents, suicide, or unexplained. As families affected by SUDC know, these deaths are hugely traumatic for parents and families, but not all receive essential support and care in the aftermath.

QUINTET is a £1.2m collaborative project funded by the National Institute for Health and Care Research (NIHR). It will gather evidence from professionals, families and health economic data to make recommendations for improvements in service provision and care for families affected by the sudden and unexpected death of an infant or child (SUDIC). SUDIC refers to deaths not expected within the 24-hour period before they occur.

This project is groundbreaking and we are honoured to be working alongside the University of Southampton and other national experts as a partner charity for QUINTET. Our CEO, Dr Nikki Speed, is a co-investigator on the project, leading on recruitment and engagement. SUDC UK collaborates with other charity partners to provide support for participants, Dr Emily Cooper is an SUDC Ambassador and there are SUDC UK-registered parents providing impactful support as parent investigators and members of the parent advisory group. Thank you to everyone involved!

QUINTET will deliver a detailed understanding of the following:

approaches to care for families who experience sudden unexpected death in infancy or childhood
where children have died
what care around death and bereavement is provided and by whom
the experiences and needs of professionals
how families experience different approaches to care models/approaches
the long-term impact of bereavement on parents, including health economics

It will also facilitate a public awareness campaign, Two Times Tragedy, and a new Strategic Partnership For Sudden Child Death, bringing relevant charities together to amplify their voices and drive change.

Quote from the lead investigators in 2025

“This work simply wouldn’t exist without SUDC UK. From the very beginning they believed in the vision, helping us shape the methods, secure funding, and bring other charities to join us. Nikki Speed has opened doors to families, stood alongside us in designing a pathway of support, and is now propelling the Two Times Tragedy campaign to demand change. Their passion, ideas, and relentless commitment have turned our research from an idea into a movement.”

The Team

Lead Investigators Professor Anne-Sophie Darlington and Professor Katherine Hunt, University of Southampton are Co-Chief Investigators

Dr Vicky Payne, Dr David Wright, Dr Seilin Uhm, Dr Jamal Hossain, University of Southampton
Professor Heather Gage, University of Surrey
Dr Joanna Garstang, University of Birmingham and Chair of the Association of Child Death Review Professionals
Sarah Hodkinson, University of Southampton and Shooting Stars Children’s Hospice
Dr Emily Cooper, Universities of Central Lancashire and SUDC UK ambassador
Dr Nikki Speed, SUDC UK
Stacey John, Forget Me Not Children’s Hospice
Emma Kneebone, 2Wish

Publications

Hunt, et al, BMJ Editorials, 2025

Help QUINTET - Contact us to ask about taking part

Voicing the Void (Active, project started August 2025)

Voicing the Void will connect experts from the arts, health sciences, psychology, philosophy, humanities and unite them with bereaved parents, advocacy organisations and creative practitioners to develop and test a new word to describe a parent whose child dies and explore how poetry and prose could showcase the new word and support parents to express their grief.

The Project

It represents an inspiring and creative partnership between the School of Health Sciences, Southampton Institute for Arts and Humanities, the Universities of Leeds and Glasgow, Child Bereavement UK, SUDC UK, Shooting Star Children’s Hospices, an NHS Mental Health Trust, Artful Scribe and the National Poetry Centre and SUDC father and ambassador, author and poet, Lee Heywood.

The Needs and Experiences of SUDC Families (2023-2025)

The Project

National guidelines in the UK and worldwide on the multiagency response and how to support families after a sudden child death have mostly been created using evidence gathered from families affected by the death of a baby. This qualitative project was the first to analyse the needs and experiences of families affected by Sudden Unexplained Death in Childhood.

SUDC UK collaborated with Dr Emily Cooper, an SUDC Ambassador and academic from the University of Central Lancashire and a small steering group on this project. We are deeply grateful to Emily for her novel and impactful work, her professional and personal commitment to the cause.

Impact – How has this this project helped families affected by SUDC?

This project gave families affected by SUDC a voice, enabling them to create a foundation of evidence to help improve services and care. It supported the application for the QUINTET study and presentations and publications associated with this study have informed national and international training for professionals.

Publications

Cooper et al, BMJ Paediatrics 2025

Improving Parental engagement with Child Death Review (2022-2024)

This project led bereaved parents to work with professionals to develop a toolkit including videos, documents and process guides and a training programme to help involve bereaved parents in Child Death Review (CDR) for children aged between 1 month and 18 years.

The toolkit is available from a free to use website and has been disseminated through professional networks such as the Royal College of Paediatrics and Child Health, the National Child Mortality Database and Bereavement Support Organisations.

SUDC UK was part of a small steering group and supported the project’s application and launch. Thank you to our communications manager, Hannah Johnston, who shared her personal story at the national launch of this toolkit.

Dr Joanna Garstang donated the project’s prize for best poster at the British Association for Community Child Health (BACCH) conference to SUDC UK.

“I want to give the prize money to SUDC UK as we couldn’t have done the project without you.”

The Team

Lead Investigator: Dr Joanna Garstang, University of Birmingham

Sara Kenyon and Karen Shaw, University of Birmingham
Anna Pease and Jenna Spry,^,University of Bristol
Gayle Routledge, A Child of Mine Charity

Impact how did this help?

SUDC UK advocates for a trained and experienced key worker (single point of contact) for every family affected by a sudden child death. Sadly, not every area has a dedicated professional to take on this role. This project has created a toolkit that can be used to train and inform key workers across the country to reduce inequity and support more consistency of care and CDR. Family input into this CDR process is essential if we are to learn from these death and experiences to improve local care and collect the right, rich data to help us better understand SUDC and prevent future deaths.

Publications and resources

The NCMD Thematic Review on SUDIC in England

December 8th 2022 marked the publication of a ground-breaking report from the National Child Mortality Database (NCMD): Sudden and Unexpected Deaths in Infancy and Childhood. This report used the unique data submitted by Child Death Overview Panels around England to investigate sudden and unexpected deaths both among infants (0-12 months) and older children (1-17 years) and drew out learning and recommendations for service providers and policymakers. It was a result of a strong collaboration between the coauthors: NCMD, SUDC UK, The Lullaby Trust, and Elliot’s Footprint.

This report was the first time we examined the number of children affected by sudden and unexpected deaths, it analysed information collected over 1 year on sudden and unexplained deaths and shared personal stories and pictures very generously provided by affected families. We are deeply grateful for their support.

This report showed that 30% of all infant and child deaths are sudden and 19% of these have no immediately apparent cause of death.

Dr. Nikki Speed, CEO of SUDC UK and an author on the report said

“This data is so important to our mission to better understand and prevent Sudden Unexplained Death in Childhood. There is currently nothing that can be done to stop children dying this way and by examining information within a national population, we gain crucial, real-life insight within this geography: Who is being affected? What type of information is being collected? Does analysing this data reveal any information which could help save lives, inform future work or improve care for families?
We are so delighted that this report shines a light on the need to specifically prioritise research into SUDC, recommends improved national medical education, improved agency communication and better care for families. The findings should now be used to influence training and policy and draw much-needed attention and urgency to this important cause.”

Of the sudden and unexpected deaths in 2020 that had been investigated and reviewed, 16% (n=32/204) were classified as unexplained. The association between seizures and sudden unexpected deaths reported by other groups (including the SUDCRRC) was corroborated, as 27% (8/30) of children who died without explanation had a history of convulsions.

Impact – How did this report help?

Used as a briefing document for the Parliamentary debate on SUDC in January 2023 and presented to various national and international audiences, this report was integral in raising awareness and engagement in SUDC. As a co-author it gave SUDC UK a platform and credibility as a source of national expertise in sudden and unexpected child death, presenting opportunities for SUDC training and new collaborations.

Publications

2019 – 2020 UK Registry Steering group

Between 2019 and 2020, SUDC UK was part of a national steering group aiming to establish a national registry of child deaths.

Impact – How did this work help?

Led by Peter Fleming CBE, this group of Senior Coroners, Police, clinicians and charities, discussed the potential impact on prevention of a national registry, the practicalities of creating one and how best to engage families. Importantly the group brought together and asked families their opinions establishing the following:

There was a need and desire to standardise data collection and care nationally among professionals, families and charities.
A framework for a national registry and biobank of all sudden and unexpected deaths of infants and children in England was achievable.
Families showed support for a well-planned registry which engages them and uses robust consent procedures.

This project supported creation of the NCMD and inspires future connection of this database with other data sources, for example genetic analysis and samples stored for research

A milestone for families and for SUDC UK, this was the first time SUDC families in the UK were ever brought together at a professional meeting to input into policy. Thank you to everyone who attended.

Publications

Fleming et al, Arch Dis Child 2019

2017-2020

In the years before founding the charity, the co-founders of SUDC UK personally supported research by invested financially and/or by enrolling their children and families in US and UK medical research projects.

We deeply understand and appreciate every family who contributes to research in any way, for their beautiful children as an important legacy, and also for everyone else affected. Together, through collaboration and investment in excellent projects, we will create a brighter future where SUDC is predictable and preventable.

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