NCMD report: Using data to improve palliative care outcomes for children

In the UK, it is a statutory requirement to investigate every child death. Our doctors, alongside other medical professionals, sit on a panel for every region. Forms are filled in by those who care for the child at the end of their life – expected or unexpected and these forms are then analysed before being sent to a national body who hold that data in Bristol – The National Child Mortality Database (NCMD). This latest report published in July 2025 is hugely significant. It’s the first report to look at the quality of anticipated deaths. On the list of authors on this report is Dr Emily Medical Director for Helen & Douglas House, and Emily Tammam, whose daughter Neve came to Helen & Douglas House until her death in 2023.

The NCMD is an NHS-funded programme delivered by the University of Bristol. Its main purpose initially was to prevent child deaths. Many national child safety campaigns have come from the data including the Back to Sleep campaign, swimming safety campaigns and road safety campaigns to name a few. 

For a long time now, Dr Emily Harrop, has played an integral advisory role within this group. As well as advising, she alongside others has also challenged the group on how this data could also be used to look at the experience of the children whose deaths we cannot prevent. Are there any gaps in services from hospices and hospitals? It is one of the questions that Dr Emily was interested in seeing answers to.

It was agreed to look at data from the 3 years between 2019 and 2022 – the most recent completed cohort of data. What the data showed was more than Emily or any of the rest of the panel imagined in terms of useful and insightful findings.

• More than half of children who die have a long-term illness/life limiting illness. This shows the significant and growing importance of having hospice services like Helen & Douglas available to support children and families to manage significant symptoms and pain.
• The data highlighted an uncomfortable truth that more children with serious illnesses died in the poorest areas of the country.
• Most children die in the 1^st month of life. That’s why at Helen & Douglas, we’ve invested in a perinatal nurse to speak to parents whose baby is at risk on a neonatal unit and to parents who know they are pregnant with a baby who may die.
• 77% of all children who die, even with a life-limiting condition, still die in hospital

• Appropriate parallel planning and timely engagement with palliative care
• Documented and accessible advanced care plans
• Appropriateness, timeliness and availability of prescribed medications. Since Brexit and particularly since COVID, it’s been difficult for our doctors to get the medicines children need in the form we want them, where the child is, even when they’re dying. This could be down to many factors, however it does affect the quality of the child’s death and it’s something we feel passionately about changing for the better.
• Leading and coordinating care by a named medical specialist. At Helen & Douglas House, we have specialist doctors and nurses
• Funding of palliative care services
• Bereavement support and allocation of a key worker. Find out more about the Bereavement support we offer at Helen & Douglas House.

The NCMD board have made recommendations based on the data from the report. Specifically they mention further research is needed into the issue of having timely and available medicines where the child is. They also highlight the potential impact of supporting children and/or families to decide where they would like their treatment, where they would like their end of life care to be and planning to accommodate these wishes within communities as well as in hospitals and hospices themselves