- Strategic planning Understanding the population
Understanding the population
Understanding the needs of the children and young people in your geographical footprint who may benefit from access to palliative and end of life care.
Understanding which children and young people may benefit from palliative and end of life care
Palliative and end of life care for children and young people can be considered at the point at which a life-limiting condition is diagnosed or recognised. Where a child or young person has a life-threatening condition, it may be considered when it is recognised that curative treatment is not an option. However, access to palliative and end of life care is dependent upon individual need rather than diagnosis.
Some children need palliative and end of life care from birth; others only as their condition deteriorates or becomes unstable. Palliative and end of life care may be needed when it is recognised that the child or young person is likely to die within the next 12 months.
You can find out more about which children and young people need palliative and end of life care here.
Establishing how many children and young people may need palliative and end of life care within an integrated care system population
Several useful data sources can inform a population health management approach for this group of children and young people. These include the number of children and young people aged 0-24 with life-limiting or life-threatening conditions, which is expressed at England-wide, former government office region and lower-tier local authority area, and depicted in the Make Every Child or Young Person Count and the Making Every Young Adult Count studies.
Both studies were conducted by Professor Lorna Fraser at the Martin House Research Centre, University of York and funded by The True Colours Trust. You can access information about the methods used in the reports.
The prevalence of life-limiting and life-threatening conditions per 10,000 children and young people aged 0-24 per ICS area, which is expressed at England-wide, former government office region and lower-tier local authority area, is also described in both studies.
This table combines the data in both studies and sets out the number of children and young people in England aged 0-24 with life-limiting conditions, in addition to the prevalence of life-limiting and life-threatening conditions per 10,000 children and young people aged 0-24, per ICB.
ICBs should note that, at any one time, some children and young people with life-limiting or life-threatening conditions will be relatively stable and will not need active palliative and end of life care.
Data from the National Child Mortality Database (NCMD); this publishes annual child death review data releases which describe the number and rate of child death notifications received by child death overview panels (CDOP) across England by:
- region
- age group
- sex
- social deprivation quintile
- month of death
- ethnicity
- place of death
- gestational age at birth
- primary category of death assigned at CDOP review
ICBs may also wish to consider the following data sources:
- data from any local or regional point prevalence studies which have been conducted
- data from individual local CDOPs
- Quality Outcomes Framework (QOF) data; GP practices are awarded QOF points if they establish and maintain a register of all patients in need of palliative care or support irrespective of their age (see page 85 of the Quality and Outcomes Framework guidance for 2023/24)
- the cohort of children and young people in the ICB footprint who are eligible for continuing care
- the cohort of children and young people in the ICB footprint who have an education, health and care plan (EHCP)
- the cohort of children and young people under the age of 18 who are defined as children in need on the basis that they are eligible to receive social care from the upper-tier local authorities that operate in the ICB footprint; councils have their own criteria for determining whether a child or young person is eligible for support
Population health management
Consistent with NHS England’s approach to population health management, ICBs should help to maintain the physical health and mental wellbeing of children and young people in palliative and end of life care. This may reduce demand for unplanned admissions to acute settings.
ICBs can partner with their local authorities and education settings to jointly identify, plan, assess and commission the care and support needed by children and young people with life-limiting or life-threatening conditions.
Creating economies of scale
The numbers of children and young people with life-limiting or life-threatening conditions are small. Children and young people’s palliative and end of life care services are often specialist and provided across regions which span more than one ICB.
This means that ICBs may wish to create economies of scale by planning these services for overall population groups of at least one million. To create the economies of scale helpful to commissioning effective services, ICBs can consider working with their neighbouring ICBs. They can determine how many children and young people who need specialist palliative and end of life care they are each responsible for commissioning for and then work together to create the economies of scale necessary to commission these services effectively.
ICBs with access to the FutureNHS platform can read how professionals and providers are working together to deliver 24/7 children’s palliative and end of life care in the East of England in this presentation.
For those who do not yet have access to the platform, please email england.palliativeandendoflife@nhs.net
Find out how to review your local service provision here.