19th March 2024
We are delighted to share this Voices blog by Philippa Bishop, iHV Head of Training, which marks yesterday’s launch of the first national Sudden Unexplained Death in Childhood (SUDC) Awareness Day.
It was a privilege to be invited to attend the Parliamentary launch of the first ever Sudden Unexplained Death in Childhood (SUDC) Awareness Day – 18 March 2024. The event took place in the Terrace Pavilion in the Houses of Parliament on the banks of the River Thames.
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 Vicky Sleap – Deputy Director of the National Child Mortality Database (NCMD).
Rt Hon Kwasi Kwarteng MP at launch of SUDC Awareness Day
Dr Nikki Speed – Co-founder and CEO of SUDC UK
The landmark event was attended by a very broad representation of medical professionals from across Royal Colleges, Police and voluntary services supporting bereaved families. Present also were a number of bereaved parents identifiable by the badges they wore bearing photos of their children affected by SUDC. 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. It was also helpful to hear how health visitors can be central to providing tailored empathetic support to families at the time and later with subsequent children, and to understand also what is regarded as not helpful to families when care offered remains routine, tick-boxed and is not individualised to take account of the parental trauma and preferences.
The small and energetic team behind the SUDC-UK charity has achieved so much in shining a light on Sudden Unexplained Death in Childhood this year. See below their summary of progress in key areas and also their reported remaining challenges:
| Progress | Challenges |
| IMPROVED PROFESSIONAL AWARENESS OF SUDC | Embedding consistent medical education on SUDC, care for families and child death review process remains limited*
(* see below iHV contribution to professional awareness raising) |
| IMPROVED PUBLIC INFORMATION | BBC coverage (Panorama – 5 Feb 2024)
NHS website information is updated; however, SUDC does not have its own dedicated webpage yet and is included under SIDS |
| NEW GENETIC ANALYSIS FOR SUDC**, CREATION OF THE ACDRP & PROMOTION OF KEY WORKER ROLE
**(whole genome sequencing launched Nov 2023) |
50% of areas do not have dedicated Key Workers. Guidelines are based on infant death and need updating. As a result, families struggle to find the layers of support they need and are still contacted without warning or compassion by professionals |
| NEW EVIDENCE *** STRENGTHENING ASSOCIATION OF SUDC WITH FEBRILE SEIZURES – RESEARCH QUESTIONS COULD IDENTIFY CHILDREN AT RISK
***(new evidence published in Jan 2024) www.sudc.org.uk/seizures |
Funding for scientific SUDC research is limited. The process for tissue retention and the lack of a national registry with parental consent both limit UK research opportunities |
At the Institute of Health Visiting, we have been pleased to support SUDC-UK’s first objective to improve professional awareness of SUDC with our iHV Insights event “Sudden Unexplained Death in Childhood: when the worst happens” – held in January 2024, and our publication of the associated Good Practice Points (GPP) “Sudden Unexplained Death in Childhood” this week (March 2024). I have enjoyed working in partnership with SUDC UK and colleagues to take this forward and to champion improved support for bereaved parents.
If you are an iHV Member, please take time to watch the webinar recording and review the GPP (see links below) to update your knowledge of this intensely traumatic category of child loss and increase your confidence in applying the practice points in your own practice. Much of what I heard from the parents yesterday reinforced the points we have published – with the emphasis on careful listening to parents and individualising the support you offer them to acknowledge their loss, trauma and unique needs. If you have any questions, do get in touch with the team at www.sudc.org.uk and review the information on their website.
Philippa Bishop, Head of Training, iHV
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