Vicky Sleap and Sylvia Stoianova, Deputy Directors of the National Child Mortality Database
When you assist in a child death review, you are helping to identify and illuminate opportunities to reduce child deaths. This is how learning becomes prevention.
What comes to mind when you hear the words “child death”? Sadness? Compassion? Curiosity? Often, for clinicians, it is fear.
Will I be told that I have missed something, or that I should have done something different? Should I express sorrow to the family? Will they be angry? What happens now? Will I have to contribute to a review? These are all common thoughts and feelings experienced by clinicians when a child dies.
Let’s be honest, child death is one of the hardest things in clinical practice. Hopefully, it will be a rare event in your career. In this blog, Vicky Sleap and Sylvia Stoianova outline how contributing to a child death review is positive and enables the National Child Mortality Database (NCMD) team to make recommendations for national changes.
What families want
One bereaved Mum put it simply “One of the things you want most when your child dies is learning so that another parent doesn’t go through the same devastating experience.”, a sentiment shared by most of the bereaved parents that NCMD engages with. National research on bereavement experiences found similar sentiments from many bereaved families.1
Before 2008, there was no formal review of all child deaths. Sometimes a coroner would investigate, some children would be discussed at local morbidity and mortality meetings, and some children died without any discussion at all. The statutory child death review (CDR) process in 2008 bought in a structured, multi-agency approach to learning from every child death in England. Similar process now exists in Wales, Scotland and Northern Ireland (see box below).
- Child death reviews in the UK and Ireland
While NCMD is England-based, similar approaches exist elsewhere. Scotland runs a national Child Death Review process through a central hub; Wales uses a Single Unified Safeguarding Review model; Northern Ireland undertakes multi-agency case management reviews; and Ireland is developing national insight through its paediatric mortality register.
There’s no single UK-wide system, but the direction of travel is shared — with learning often spreading across nations through professional networks, research and common themes in review findings.
This process is important, because the family are given the opportunity to contribute, and because a child death review looks at a child’s entire life, not just their final hours. This gives an opportunity to consider wider factors to reduce the risk of future deaths. That includes medical conditions and healthcare, access to services and the impact of social determinants of health (ie the non-medical conditions in which they are born and live). When you assist in a child death review, you are helping to identify and illuminate opportunities to reduce child deaths. This is how learning becomes prevention.
As with all processes, with the establishment of CDRs there was incremental improvement. Some regions developed well-resourced effective processes. Other less resourced areas relied on single committed individuals and improvements were more challenging. There were concerns raised whether regional CDR could have an impact: “What difference is this making?” “Nothing changes”, “It takes a lot of time that I could better spend with my patients.”
The purpose of NCMD
In 2018, the NCMD was formed with the purpose of collating child death review data nationally and making recommendations for change. The NCMD established a network of child death review professionals with formalised central support. This facilitated colleagues in Child Death Overview Panels (CDOPs), hospital trusts, police forces and primary care to collaborate. CDOPs are multi-agency panels whose role is to conduct CDRs. The output from their discussions is sent to NCMD.
The NCMD network of professionals includes anyone who contributes to CDRs. It provides a conduit through which we can listen, find out about challenges being experienced and what is needed to help improve things. Sometimes this might be guidance, sometimes evidence and sometimes access to a national platform to effect change.
You can contact the NCMD team if you have a question about the process, research, training, events guidance or reporting associated with CDRs: ncmd-programme@bristol.ac.uk.
Driving change through your insight
NCMD has become a focal point to translate what colleagues see on the frontline into action:
I’m worried about children’s asthma inhalers being empty when they need them, can you do anything about getting dose counters implemented.
I’ve seen two children this week who’ve swallowed button batteries, is there someone nationally we can raise this with?
Have you seen an increase in the number of child suicides? It feels like I’m seeing more than usual in my area.
Through NCMD, the questions clinicians ask after a child dies don’t stay within the local Trust; they become part of a national picture. Concerns raised through the CDR process, and analysis of national data, have helped shape NICE guidance, informed the national suicide prevention strategy, led to a change in the Government’s Homelessness Code of Conduct and driven changes in areas like asthma care and product safety.
At local and regional levels, reviews have highlighted common, recognisable issues such as poor follow-up, medication problems and communication gaps and turned them into clear opportunities for improvement. For example, asking healthcare providers to improve awareness and consistency of pathways for early referral to clinical genetics and to ensure consistent use of professional interpreting services across all stages of care.
They’ve also exposed wider risks, from deprivation to environmental factors like air pollution, helping us better understand the contexts in which children become most vulnerable. That learning doesn’t stay hidden: NCMD publishes regular reports and deep-dive analyses online, while also feeding data back to Child Death Overview Panels (CDOPs) to support change on the ground.
NCMD has also become a place where you can come when you have questions about the process itself.
This child died abroad, should they still have a child death review?
How do I decide if something is a modifiable factor?
This community is helpful to us too because it keeps us informed about what is happening in the real world and helps us decide where to focus our efforts. Together we have become a formidable team working to improve outcomes for children and making a real difference.
So, to return to those original questions
Could something different have been done? The CDR process can provide an answer and identify what can be learned.
Should I express sorrow to the family? The answer is always yes. Families repeatedly tell us at NCMD that they appreciate communication of sadness or sympathy.
Will they be angry? Sometimes (usually driven by anxiety and grief), and the CDR process gives them a place to ask questions and find answers.
What do I do next? Follow local and statutory guidance. Check the NCMD website for a range of helpful information or contact us with your question at ncmd-programme@bristol.ac.uk. You don’t have to navigate this alone.
Will I have to contribute to a review? Yes, if you have cared for a child that has died. Everyone who has had contact with the child during their life or been involved in the investigation after that death will be asked to contribute. Your contribution will help to ensure that something good can come from something devastating. You might help identify a new problem that needs addressing, you might be contributing to strengthening the evidence base on a specific issue and in doing so, you might just help save another child’s life.
Visit the website of the National Child Mortality Database for: guidance, publications, research, training and events, and to sign up to our newsletter.
To contact us, email: ncmd-programme@bristol.ac.uk
For more information on safety in paediatrics and child health, please visit our Patient Safety Portal. And look out for our Safety eBulletin, which are emailed every two months to members opted in get College updates (you can check your contact preferences on your online account).
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Jacobson J, Murray A, Templeton L. Voicing Loss: Meanings and Implications of Participation by Bereaved People in Inquests: Qualitative Interviews and Group Discussions, 2021-2024 [dataset]. UK Data Service; 2024 [cited 2026 Jun 2]. Available from: https://reshare.ukdataservice.ac.uk/857425/ DOI: 10.5255/UKDA-SN-857425.