Comments from Dr Nikki Speed, SUDC UK CEO on the NHS 10 Year plan
After consulting on the NHS 10–Year plan and awaiting the final announcements, I probably share some of the concerns and tentative excitement of our community. What will the impact be on bereaved families and how will this help prevent Sudden Unexplained Death in Childhood in the future, if at all? Despite some proactive action for maternity and neonatal care it is sadly a missed opportunity to strategically focus on sudden unexpected child death and much-needed improvements in bereavement support after a child has died. However, there are three elements of the plan that do feel particularly hopeful.
Whole Genome Sequencing for every newborn baby
“We will implement universal newborn genomic testing and population-based polygenic risk scoring alongside other emerging diagnostic tools, enabling early identification and intervention for individuals at high risk of developing common diseases”
SUDC UK has already made groundbreaking changes in national genetic testing and when we heard this new announcement, it made me smile ALL DAY. As a parent organisation we see our role here as critical – we must advocate for proactive intervention to prevent future deaths that could potentially present as SUDC. SUDC UK are a member of the Genetic Alliance and their All-Party Parliamentary Group and we eagerly await clarity on timings and the criteria for gene inclusion. Thank you to everyone involved in the pilot Generation study and to the team working over the coming years to implement this plan by the end of the decade. Genes associated with sudden death must be included in analysis as soon as possible and SUDC UK will do all we can to expedite this.
A workforce fit for the future
The 10-year plan’s commitment to ‘overhauling education and training in the NHS’ and addressing the ‘productivity crisis’ is close to our hearts as we continue to deliver SUDC medical education and work closely with the Royal College of Pathologists to highlight the crisis in paediatric pathology. Families are still waiting for answers for many months, sometimes years and action must be taken to address this unacceptable failing.
You may know that after a pathologist’s report is finally complete, the process of reviewing what has happened and learning from it is called ‘Child Death Review’. This statutory process is crucial for caring for families and preventing deaths and today it remains unclear how much the dissolution of NHS England and implementation of the 10-year plan will disrupt the vital key workers and other professionals working in this field.
SUDC UK has championed for every family to have a single point of contact or ‘key worker’ since 2017 and we continue to advocate that there is a trained and dedicated role for every family in many ways, including as parent representative on the national Association of Child Death Review Professionals (ACDRP) executive committee. Please do contact SUDC UK if you are a bereaved family and don’t think that you have a single point of contact or if you’re a professional struggling without dedicated key workers and our experienced team can help your local families.
Research and innovation
The final element of the 10-year plan that provides hope for a brighter future is the investment in a Health Data Research Service (HDRS) which could bring together different data sources to help facilitate research – this could be transformative for SUDC progress. The Department of Science and Innovation plans to ‘ignite growth’ and boost the UK’s world-leading status in research. We hope that over the next 6 months you will help us elevate SUDC research as a government priority. Please watch this space as you see us launch new SUDC UK-funded research and share a template letter to send to local MPs including a brand-new focus for discussion with a clear end goal.
Together with your help and government support, we will make SUDC predictable and preventable and save children’s lives – in memory of all our beautiful children who shine bright and are never forgotten – always so deeply loved.
