Dr Emily joins Dr Rakesh Koria as they explore how data from the National Child Mortality Database (NCMD) and thematic reviews are shaping end-of-life care for children and young people. In this new series on the NHS England South East Palliative & End of Life Care Strategic Clinical Network’s Podcasts, Emily and Rakesh, who are fellow colleagues and experts in children’s palliative care, share their thoughts and experiences of the data they use and collect, as well as sharing some exciting new projects emerging that will contribute to significant improvements in care across the region and beyond.
The podcast is split into two parts which cover varying topics in medical data and palliative care.
Key topics covered
- The role of child mortality data in shaping care practices
- Insights from the National Child Mortality Database (NCMD)
- Challenges in medication access for paediatric palliative care
- Variations in care across regions and the role of social determinants
- Startegies to improve support for families and frontline professionals.
Episode 1
If we are really sensible about how we look at the sort of data sets we might collect prospectively, that’s likely to be incredibly powerful for the services we run. It’s likely to support their quality and it’s likely to support their funding over time
Episode one introduces the NCMD datasets and how these can be impactful to palliative care and indeed, healthcare as a whole. Both doctors say that while in times gone by, the prospect of collecting vast datasets would’ve been a daunting one that threatens to impede their work professionally, in fact collecting data can actually prove very helpful and impactful down the line in improving quality.
Data from the NCMD is actively helping healthcare professionals to reflect and act upon risks. Death provention, quality of care and improving safety for children could all be improved with this data.
The data also shines a spotlight on some more uncomfortable but important issues within healthcare generally across the country, such as racial inequalities, drastic geographical variations in care and service provisions, as well as areas for improvement in areas of social deprivation. This also highlights possible changes we could make to how we promote services.
The data shows that the South East region is doing reasonably well in terms of care planning and symptom management.
Dr Emily also highlights an area which is beginning to emerge as a future concern: transition. As children reach their 19th birthday, they transition from children’s services into adult services, which for many, can prove extremely tricky. To help scope out this issue, we at Helen & Douglas House have set aside consultant session time to do joint working with adult services in order to try and understand this issue better.
Listen to episode 1
Episode 2
Episode two focuses on the exciting projects Dr Emily and her colleagues across the paediatric palliative care community are part of.
The first is expected to be available later in 2025. The professional advisory group for NCMD have agreed to do a thematic review into the deaths of children with life limiting conditions. This has now been scoped with some input from a parent of a child who died just over a year ago from a brain tumour. This review hopes to answer some questions as to whether we are missing a need.
The second is project is the Cloud 21 project. Cloud 21 are experts in NHS datasets and they are working with Dr Emily and her colleague, AK Anderson to agree a paediatric palliative care dataset for prospective reporting of activity in paediatric palliative care settings. The future aim of this project is to make the collection of data an easy, regular and routine part of the job.
Questionnaires have been sent out to all providers in the South East and analysis is now beginning to take place on the feedback from these.
This project hopes to answer questions on what’s working and what’s not, help identify and analyse patient journeys, understand individual services and more importantly, how these services should be funded.
Episode 2 also comes back to Transition and also the rise in future case load. Dr Emily references Lorna Frasers important work in Paediatric Palliative Care when she says
By the year 2030, it’s quite likely that their will be up to a 25% increase in the number of children that we care for”
Then, talking about this in context of more children living with complex conditions longer and into adulthood, Dr Emily says
There will be a piece of work to do together between children and adult services really understanding this bulge (in population) that will continue coming for a while of emerging adults of a range of abilities and vulnerabilities coming through with high technology dependence needs and long term conditions.
I’d like to quote an advocate of theirs, Lucy Watts ‘we are an unforseen generation. We are something there wasn’t before and that’s perhaps why our needs are not being met’ and that stays with me.
So, it is hoped that with working to gather more data across regions and services, and working with adult services, Helen & Douglas House can continue to make positive and impactful changes across the whole sector and improve the lives of more children and families.
Listen to episode 2