Palliative care strategy - population data and research: overview

5. Palliative care population needs for children and young people

5.1 Place of death

In 2022/23, a total of 235 children and young people under 18 died in Scotland (excluding sudden or accidental deaths), 7 (3%) in a children's hospice, 48 (20%) at home and 180 (77%) in hospital. Babies under one year accounted for 153 (65%) deaths with 90% dying in hospital. Of all these deaths, 26% were among children in the most deprived category.^[8]

The Children in Scotland Requiring Palliative Care 3 (ChiSP 3) study produced by Public Health Scotland and reporting data from National Records of Scotland showed that 149 children died in Scotland in 2018/19 and 28% of those who died were under 1 year old.^[9] Location of death was reported in three groups with missing data recorded as 'home' which may overestimate home deaths. A majority of children and young people (0-25) with serious health conditions died in hospital (71%), followed by home (21%) and hospice (8%). Hospital deaths were highest for babies under one year with more children over six years and young people dying at home.

5.2 Children and young people living with palliative care need in Scotland

The ChiSP 3 report^[10] estimated how many children and young people were living with serious health conditions in Scotland using Scottish Birth Record (SBR) and hospital inpatient (SMR01) data and found those numbers had increased over time. by 2018/19, there were thought to be about 16,700 children aged 0 – 21 in Scotland living with serious health conditions, with around 5,700 children needing an emergency hospital admission.

In that study, about 33% of the children identified had congenital health conditions. 25% of children and young people lived in areas classified as being in deprivation category 1 (most deprived). However, many of these children can have health conditions that are relatively stable, and they may not need palliative care all the time.

5.3 UK research on palliative care need for children and young people

A recent study in Wales provided more data on the numbers and complexity of care needs among children and young people with serious health conditions.^[11] The population of children and young people with serious health conditions in Wales increased by almost a quarter in the decade from 2009-2019. In 2019, it was estimated that 58 in every 10,000 children in Wales had a serious health condition (196 in every 10,000 for under one year olds). More of these children and young people lived in areas of higher deprivation.

Children and young people with serious health conditions in Wales were disproportionately high users of health and care including paediatric intensive care admissions (70% overall), emergency hospital attendances and admissions, and general practice prescriptions. Many of these children had complicated health and care needs.