RESOURCES FOR PROFESSIONALS

Thank you for the care you provide.

If you are caring for a family affected by the unexpected sudden death of a child, or are looking for more information on SUDC, we hope our resources will be helpful.

  • Please encourage the family to register with us or you can proactively refer a family below and we will reach out with helpful information and connect them with support services. SUDC UK supports families at any stage following sudden child loss with no immediately apparent cause and they do not need to wait for the post mortem report or the investigation to conclude.
  • One page PDF summary of SUDC UK support services
  • This article in paediatrics and child health summarises key considerations for an SUDC-bereaved family in the U.K. 
  • Support with further investigations is important for SUDC cases. We recommend that the tissues taken at post mortem are retained, families are referred for medical screening (for example, via an Inherited Cardiac Conditions Clinic) and that a referral is made for whole genome sequencing and SUDC analysis (R441 in the National Test Directory). Please visit our family screening page for more information.

Professional Resources

Sudden Unexplained Death in Childhood (SUDC) is the sudden and unexpected death of a child, between 1 and 18 years of age, which remains unexplained after a thorough case investigation is conducted. This must include; examination of the death scene, performance of a complete post-mortem, and a review of the child and family’s medical history (Medically defined by Krous et al in 2005).

  • Download or order free public and family information leaflets
  • Please use the NCMD video on this page which features our CEO, to support a family with consent for retention of post mortem samples.
  • SUDIC Professional Guidelines
  • Family information on the child death process, tissue retention and terminology used in these cases.
  • Educational videos on SUDC including videos featuring families and an NHS Grand Round Presentation
  • Training – Contact us to request educational meeting attendance or training at no cost: Nikki Speed PhD is our CEO, co-founder and a bereaved mother herself. She an experienced public speaker and has presented at many meetings including regional study days, national and international conferences. Meetings are supported by SUDC ambassadors where appropriate.
  • Sign up for our professional e-newsletter and stay informed.

“Unexpected death of a child of any age is perhaps the greatest tragedy any family can experience. I give my strongest possible support to the work of SUDC UK – supporting bereaved families and facilitating research aimed at understanding and preventing unexpected deaths of children. I am convinced that with the right research, we will soon be able to prevent many such deaths.”
Professor Peter Fleming CBE. Emeritus Professor of Infant Health & Developmental Physiology at Bristol University.

RESEARCH & STATISTICS

A selection of the published research articles on SUDC are available to view here.

Read the ground-breaking National Child Mortality Database (NCMD) report, co-authored by SUDC UK. It is the first national report to review UK SUDC deaths and identify themes and recommendations.

Learn more about the largest database of SUDC cases – The SUDC Registry and Research Collaborative. This unit has been part-funded by SUDC UK.

Discover the government recommendations and footage from the historic Parliamentary Debate on SUDC in 2023.

Read more about SUDC Facts and Statistics and FAQs.

This video featuring affected families explains why SUDC research is so important.

 

The NCMD 2022 Thematic Review on SUDC in England revealed:

  • 19% of child deaths are sudden and without an immediate explanation
  • 16% of these remain unexplained
  • “…research in this area is now a priority. It is crucial that we identify those factors which contribute to unexpected death in children over one year old”. Baroness Kennedy KC

ONS data indicates:

  • Approximately 40 children in the UK are affected by SUDC each year.
  • Sudden Unexplained Death In Childhood is the 4th leading category of death for children aged 1-4 years.
  • There are more young unexplained childhood deaths (at 1-9 years of age) than deaths due to traffic accidents, fires or drowning.

SUDC UK supports research in 3 ways:

  • Funds medical research grants to approved projects.
  • Collaborates with organisations to optimise data collection and influence policy.
  • Guidance and referrals to SUDC research programmes, with the aim of finding answers for families and preventing future deaths.

SUDC UK is an introductory member of the Association of Medical Research Charities (AMRC) and is working with AMRC to follow its best practice standards for peer review, ensuring that decisions on research funding are made in a fair and transparent way.

HOW SUDC UK WORK WITH PROFESSIONALS

SUDC UK collaborates with those who support SUDC families or have an interest in sudden unexplained death, as discussed at the 2024 launch of National SUDC Awareness Day in the House of Commons

We understand that working on these cases can be traumatic and difficult for professionals. Thank you for all you do and if you would like support, please visit MIND’s Blue Light Support or the BMA Well Being Support Services.

Collaborating to improve policy

SUDC UK works with the following national bodies:

  • The Department of Health and Social Care and the NHS.
  • Founding member of the All-Party Parlimentary Group for Bereavement and National Grief Awareness Week.
  • Member of the Child Bereavement Network and National Bereavement Alliance.
  • Charity member of the Association of Child Death Review Professionals.
  • Working group member of the National Child Mortality Database (NCMD) 2022 SUDIC Thematic Review and member of their Public Engagement Network. Former memebr of the UK SUDIC Registry Steering Committee, led by Peter Fleming CBE.
  • Member of ISPID (The International Society for the Study and Prevention of Perinatal and Infant Death) and Nikki Speed, our CEO, co-chairs their international working group on SUDC.
  • Member of the UK Baby Loss Alliance. 
  • Member of select local Child Death Overview Panels
  • Member of the Children and Young People’s Mental Health Coalition

We aim for all collaborations to support tangible progress or resources. For example, this video produced in collaboration with NCMD, supports GPs caring for affected famlies.

SUDC UK is supported by our patron Jenni Thomas OBE (founder of Child Bereavement UK) and our expert advisory board: expert paediatricians, Professor Peter Fleming CBE and Dr Joanna Garstang and pathologist Professor Marta Cohen OBE.

Together, we hope to raise awareness and optimise UK processes, services and research. Please contact us if you’d like to collaborate on a project.

“Sudden Unexplained Death in Childhood was never mentioned during my training; not even in Paediatrics. Tragically, the first time I heard of it was when my gorgeous son Arthur died. Medical awareness has to increase; this has to change.”
Katie, Arthur’s Mum, GP and SUDC UK Volunteer.

Poster for "Together Let's Shine a Light on SUDC"

SUDCAwareness

Please join us in supporting #SUDCAwareness. March is SUDC Awareness month and the 18th March every year is National SUDC Awareness Day. Please follow @sudcuk1 on twitter for updates and subscribe to our newsletter.

Image of tweet from National Child Mortality Database