Image of Houses of Parliament with SUDC "lets shine a light on SUDC" logo

Parliamentary launch of first national SUDC Awareness Day – 18th March 2024

Thank you to everyone who attended or supported this momentous event for SUDC.

When SUDC UK founded in October 2017 Sudden Unexplained Death in Childhood was not a term used in national guidelines, documentation, press or training and since this time there has been significant progress in awareness, inclusion in policy, care for families, genetics and research. However, there is much more to be done if we are to stop SUDC. On the 18th March 2024, Rt Hon Kwasi Kwarteng MP hosted a Parliamentary Reception on behalf of SUDC UK and his constituents Julia and Christian Rogers, in loving memory of their little boy Louis.

There can be no more serious subject for an MP than SUDC

Rt Hon Kwasi Kwarteng MP

Key Message

The incidence of SUDC is not changing and never will unless we improve training, care, data collection and research with urgency and equality for children and families across the country.

Event Goals

To launch National SUDC Awareness Day, celebrate the progress to date, strengthen engagement in the cause and inspire action from the delegates to help stop children aged between 1 and 18 from dying without explanation.

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 very special event took place in the Terrace Pavilion in the Houses of Parliament on the banks of the River Thames. The sun shone, the room was full, and the atmosphere was positive, determined and collaborative – everyone united in the importance and urgency of the cause.

It was attended by 130 professionals, MPs, and bereaved SUDC ambassador families, representing affected families from across the country. The professionals included esteemed leaders from the NHS and Dept. of Health and Social Care, Royal Colleges, national police and ambulance representatives, Senior Coroners, expert clinicians and child death review experts, incredible charities and hospices, SUDC UK’s patron Jenni Thomas OBE and our scientific advisors.

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).

    It was an honour to be able to talk to so many of them about their children and to understand how they are impacted by the process and protocols accompanying their devastating loss.”

    Institute of Health Visiting

    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.

    How to make a difference

    If you are a professional, please support SUDC awareness and education amongst your organisations. Please see our professional resources and contact nikki@sudc.org.uk if we can help in any way – case studies, videos, webinars, or documents.

    Please see below for suggested actions to support the cause if you are an MP. If you are a supporter or family, please use www.writetothem.com to email your MP asking them to kindly help and urgently take these actions on behalf of your family.

    1. Challenge the Minister with a PQ why there are only 50% key workers across the country when the 2018 child death statutory process states every family in the country should have one. This was highlighted by the BBC Panorama documentary in February and at the Parliamentary reception on SUDC on the 18th March 2024.

      2. Write to the clinical Royal Colleges and your local NHS trust to ask where Sudden Unexplained Death in Childhood features in their curriculum and how they have made all their members aware of the facts, the impact and care recommendations so that both families and professionals are supported. The NCMD report published in 2022 showed that in 19% of all child deaths end without an immediate explanation, leaving families leaving hospital after a sudden death, not knowing why their child has died. SUDC has never featured consistently in training, not even in paediatrics and this must change to help families navigate this tragic time, receive appropriate care and if the cause of death is concluded as unexplained, it is important to safeguard their other children by providing medical screening and genetic analysis. SUDC UK can help with training and resources. 

    3. Write to the NHS to ask how they are supporting better understanding of SUDC using national data. Ask how they are supporting appropriate public information on SUDC and how they are they being transparent in public leaflets, the website and trust education about the association with febrile seizures based on registry data reviewed here, a leading journal publication in January 2024 and population-based data.

    4. Please attend the next debate on Sudden Unexplained Death in Childhood – date TBC. 

    To view professional pictures of the event please click here: Buttercup Photography – password sudc0324

    If you have any questions about the event or Sudden Unexplained Death in Childhood, please contact us.

    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.

    Thank you so much for your support!

    Please contact us if you would like any more materials or we can help your efforts in any way!