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21 June 2023

Rise in demand for children's palliative care expected

Demand for palliative care for children is likely to rise as conditions become more complex.

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The study by researchers at King's and the University of York found that the number of children with life-limiting conditions rose by almost a quarter over 10 years in Wales.

According to the report, one in 172 under 18-year-olds in Wales have a life-limiting condition, based on data from 2009 to 2019.

Although recent studies in England and Scotland have shown an increasing prevalence of children and young people with life-limiting conditions, this is the first study to look specifically at children with life-limiting conditions in Wales. 

The research, funded by the NHS Wales National Palliative and End of Life Care Programme Board, also found that children and young people living with life-limiting conditions were more likely to live in areas of higher deprivation.

The report recommends that children and young people with life-limiting and life-threatening conditions may benefit from specialised paediatric palliative care services.

"For the first time we've been able to show that more than half of children who die in Wales have an under-lying life limiting condition so I really hope that this report puts their needs to the top of political and orgnaisational agendas."

Professor Lorna Fraser, project lead and Professor of Palliative Care and Child Health at the Cicely Saunders Institute in King's Faculty of Nursing, Midwifery & Palliative Care

Maria Timon Samra, Chief Executive of Tŷ Hafan Children‘s Hospice, said: “Wales’s two children’s hospices are also taking huge amount of pressure off an already very over-stretched NHS. More than ever this reinforces the need for a sustainable long-term funding solution from the Welsh government.”

Andy Goldsmith, Chief Executive of Hope House Tŷ Gobaith, said: “The trends identified in this ground-breaking report predict that demand for the services provided by Tŷ Hafan and Tŷ Gobaith is going to rise steeply. It also shows that that the type of services they provide will need to adapt to keep up with the increasingly complex conditions that children are now living with.”

Eluned Morgan, Welsh Government Minister for Health and Social Services, said: “This is a really important report, providing 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.”

In this story

Lorna Fraser

Associate Dean (People and Talent) and Professor of Palliative Care and Child Health