This year there has been ground-breaking progress towards SUDC UK’s vision to make SUDC predictable and preventable. Please read our summary on recent activities below.

Dr Nikki Speed, Chief Executive of SUDC UK, and bereaved parents, including Julia and Christian Rogers, Kate Walsh, Tom Speed and Sarah Grogan, attended two extremely impactful meetings this Summer. The first was with Prof Simon Kenny, NHS Clinical Director for Children and Young People and the second, larger meeting was with Rt Hon Kwasi Kwarteng MP. At both meetings we discussed facts and evidence, the current limited awareness and research concerning SUDC and the reasons supporting the huge potential to save lives. We felt listened to and pleased that tangible actions were discussed and agreed.

Following the meeting, Mr Kwarteng MP stated “I am committed to support the urgent action needed to understand and prevent Sudden Unexplained Death in Childhood (SUDC)… I fully support my constituent and the charity SUDC UK in their vital work of raising awareness of SUDC” and he immediately wrote to the Chief Executive of the NHS, Amanda Pritchard asking for her support. NHS England replied with the following statement which confirmed their engagement in making some key interventions:

“As part of the Children and Young People Transformation Programme, NHS England are reviewing information that could be provided to families and professionals around Sudden Unexplained Death in Childhood (SUDC). This work will be carried out in consultation with families, parents and carers affected by SUDC and with the National Child Mortality Database (NCMD), SUDC charities (including SUDC UK) and relevant Professional groups.

“We will also be looking at Sudden Unexpected Death in Epilepsy and the information provided to parents, carers and professionals.

“Furthermore, work around education/training and data that helps to identify modifiable factors will be explored through the work of the NCMD and the Systemwide Paediatric Observations Tracking Programme. This programme aims to develop the processes around managing deterioration in the health of Children and Young People.”

This response from NHS England is a positive milestone for the lives of children everywhere. The 2020 and 2021 Office of National Statistics data reveals that SUDC is the 4th leading category of death in 1–4-year-olds in England and Wales and there has never been such a clear statement to review public information on SUDC, optimise data collection and learn how we could prevent future tragedies. 

For over a year, SUDC UK has also been working hard with other professionals to support a review on sudden unexpected death in infancy and childhood which is being conducted by the National Child Mortality Database and funded by NHS England. The NCMD share “SUDC UK were instrumental in ensuring that the upcoming NCMD thematic report on children who die suddenly and unexpectedly includes analysis of children over 1 year of age. Collaborating on the analysis has allowed us to put together a persuasive and detailed report which will contribute to global understanding of SUDC, with comprehensive recommendations to improve service delivery and save lives. This report will be presented to decisionmakers in the NHS and DHSC, as well as shared more broadly.

Influential support from NHS England and a senior government minster, in combination with a national evidence-based review or population data is very exciting and a real opportunity to improve awareness, research and care effectively and quickly.

However, we are mindful that today, the NHS public website still contains no basic information on Sudden Unexplained Death in Childhood, there is also no consistent medical awareness or education on this category of death. This means that if a child has died and SUDC is listed as the cause of death, today families would probably struggle to find basic information or the necessary support.

Today there is also still no nationally funded scientific research to help prevent these deaths, neither are there consistent standards of genetic investigation for families seeking answers.

SUDC UK believes the NHS website must updated with urgency. We ask that action is taken immediately to progress collaboration on SUDC awareness, medical education, data collection and research priorities. We remember Professor Simon Kenny discussing the potential benefit of a round table meeting with NHS England, the relevant royal colleges, SUDC UK and other specialists and we are keen not to delay. On average, every two weeks at least 1 more child will die this way and another family will be left with no explanation. There is no time to waste.

Thank you to everyone who has helped build awareness and support to date. Together we will make SUDC predictable and preventable.