Demand for children's palliative care expected to rise, researchers say

A new study has found that the population of children and young people with life-limiting conditions in Wales increased by almost a quarter in the decade from 2009-2019, as well as an increase in the complexity of their conditions.

Although recent studies in England and Scotland have shown an increasing prevalence of children and young people with life-limiting conditions, data in Wales has not been updated since 2009.

According to the report, one in 172 under 18-year-olds have a life-limiting condition, with more than 50% of all deaths of children in Wales between 2009 and 2019 among children with these conditions.

These same children account for seven in ten paediatric intensive care bed days, and two in ten hospital inpatient bed days.

Report author, Dr Stuart Jarvis, Research Fellow in the Department of Health Sciences at the University of York, said: "The report shows that there have been substantial increases in the number of children and young people in Wales with life-limiting conditions since 2009, with no reduction in medical complexity.

“This means that more resources are needed to simply continue to offer the same level of care to these children throughout Wales, let alone provide much-needed additional support."

The report was launched by children's hospices Tŷ Hafan and Tŷ Gobaith in Wales, with research undertaken by the University of York and funding provided by the NHS Wales National Palliative and End of Life Care Programme Board.

Eluned Morgan, Welsh Government Minister for Health and Social Services, said the report was important, due to how it provided Wales-specific data.

“I look forward to continuing to work with hospices, families and the NHS to ensure children with life-limiting conditions and their families have access to the services and support they need,” Morgan added.

Maria Timon Samra, Chief Executive of Tŷ Hafan Children‘s Hospice, said the hospice was “very proud of this ground-breaking report,” being the first ever to look specifically at children with life-limiting conditions in Wales.

“More than ever this reinforces the need for a sustainable long-term funding solution from the Welsh Government.”

Researchers also discovered that, as those with life-limiting conditions in Wales are living longer, overall complexity has shifted towards the ‘more complex’ end of the scale. For children’s palliative care providers in Wales, this means that children with life-limiting conditions are more likely to have more complex needs than 10 years ago.

Andy Goldsmith, Chief Executive of Hope House Tŷ Gobaith, said: “The report shows that the type of services we provide will need to adapt to keep up with the increasingly complex conditions that children are now living with.”

Hope House Children’s Hospices is now calling on all parties and stakeholders with interest, responsibility, and influence in children's palliative care in Wales to “work together to shape and deliver world-class, sustainable services” to meet the needs of the 4,289 children and young people currently living with life-limiting conditions in Wales.