On Tuesday 20 June we published a ground-breaking report entitled “The Children in Wales Requiring Palliative Care: Trends in Prevalence and Complexity 2009 – 2019”.
Produced to inform the future delivery of paediatric palliative care in Wales, including the services delivered by the two Welsh children’s hospices, Tŷ Hafan and Tŷ Gobaith, this represents the first published research ever undertaken to look specifically at the trends within the population of children with life-limiting conditions in Wales.
Several key findings were highlighted including:
- 1 in every 172 under 18s living in Wales has a life-limiting condition
- The number of children living with life-limiting conditions in Wales rose by almost 25% between 2009 and 2019
- The number of young people aged between 0 and 26-years-old living with life-limiting conditions in Wales between 2009 and 2019 rose by almost 33%
- More than 50% of all deaths of children in Wales between 2009 and 2019 were deaths of children with life-limiting conditions.
The research was undertaken by Professor Lorna Fraser and her team from the University of York and funded by the Welsh Government through the National Programme Board for Palliative and End of Life Care, and clearly shows just how important the services provided by Tŷ Hafan and Tŷ Gobaith Children’s Hospices are.
We know that the unique, holistic services we offer for some of Wales’s most vulnerable children and their families are taking a huge amount of pressure off an already very over-stretched NHS. It is critical we find a more sustainable long-term funding solution from the Welsh Government for our hospices, to provide the vital care and support for these children and their families.
As evidenced by this report, demand for the services provided by Tŷ Hafan and Tŷ Gobaith is continuing to rise steeply. Both hospices constantly need to keep adapting the type of services provided to keep up with the increasingly complex conditions that children with life-limiting conditions are now experiencing.
We will continue to work closely with policy makers in Wales to advocate for a sustainable funding model for children’s hospices so that we can continue to be a lifeline, providing care and support for some of the most vulnerable children in Wales, and their families.
You can read the full report here.
Maria Timon Samra is Chief Executive of Tŷ Hafan Children‘s Hospice, near Cardiff
Commenting on the new research, our own CEO Andy Fletcher added “This important new data provides a sense of the demand for children’s palliative care in Wales. Children, young people and their families in Wales described in this study need a range of services to meet often complex needs. We want to see the Welsh Government, local health boards and others to work with the children’s palliative care sector in Wales to meet the demand. Only by doing so will families be able to access the sustainable, high-quality support they need.”
