In the run up to elections in Wales this May, Wales’ two children’s hospices have joined forces to call for a new sustainable ‘Lifeline Fund’ and funding parity with the rest of the UK to ensure that all children with life-limiting conditions and their families can receive the support they desperately need.

Between us, our North Wales hospice Tŷ Gobaith and South Wales based Tŷ Hafan provide respite and palliative care for more than 400 families with children with life-limiting conditions, but currently we receive less than 10% of our annual funding from the Welsh Government.

Across the border, children’s hospices in England receive 21% of their funding from the UK Government – more than double the amount of government funding received by children’s hospices in Wales. Meanwhile government funding for children’s hospices in Northern Ireland and Scotland runs at 25% and 50% respectively, making children’s hospices in Wales the poor relation of those elsewhere in the UK.

We are hoping a debate on the funding of children’s hospice provision in Wales, set to take place next week in the Senedd, will help to inform the process of the establishment of a ‘Lifeline Fund’ putting us on funding parity with our peers across the border.

A Lifeline Fund for Wales

The debate, ‘Children's Hospices - a Lifeline Fund for Wales’, scheduled to take place on Wednesday 24 March, has been tabled by Mark Isherwood MS, the Chair of the Senedd Cross Party Group on Hospices and Palliative Care and Welsh Conservative MS for North Wales.

It is scheduled to be the last item of business before the fifth Welsh Parliament is dissolved, and will highlight the issues faced by some of Wales’ most vulnerable children and their families, before the parties start to campaign for re-election.

Maria Timon Samra, CEO of Tŷ Hafan, and Andy Goldsmith, CEO of Tŷ Gobaith, say that they hope the debate will lead to all political parties in Wales committing to the establishment of a sustainable and fair funding system – a ‘Lifeline Fund’ - for the specialist respite and palliative care relied upon by children with life-limiting conditions and their families.

Their proposal for a ‘Lifeline Fund’ stems from a report published jointly by Tŷ Hafan and Tŷ Gobaith in 2020. In the Family Voices report, families from across Wales set out their experiences, hopes and fears. Describing children’s hospices as “our lifeline”, families said they urgently need more of the care that only hospices can provide, especially in relation to respite care.

Written Statement

Health Minister Vaughan Gething met with Maria Timon Samra and Andy Goldsmith earlier this year and in the written statement entitled ‘Update Palliative and End of Life Care’ published on 5 March committed to a review of all hospice funding in Wales to be completed early in the next Senedd term.

Maria Timon Samra said, “We are grateful for those from across the political spectrum who met with us to discuss the findings of our Family Voices report in 2020, and to learn more about the experiences of these children and their families.

“But merely articulating the problems facing some of Wales most vulnerable children and families is not going to make a real difference in these unfairly difficult lives. What we need now is a commitment to change, which is why we are calling for the establishment of a ‘Lifeline Fund’ for children’s hospices in Wales within in the next Senedd term. As charities we are supported by the generosity of the Welsh public who recognize the plight of these families; we now need our Government to back this up.”

Andy Goldsmith said: “Our proposal is to move towards a sustainable model of funding that is more aligned with children’s hospice charities in other UK nations.  This funding would give the children’s hospices in Wales confidence to sustain, plan and expand our services to better meet the need of all children with life-limiting conditions and their families across the country, in turn addressing Wales’ ambition to be a ‘compassionate country’.”

Mark Isherwood MS said: “Wales needs a Lifeline Fund for children’s hospices to fairly and sustainably provide the specialist care needed by children with life-limiting conditions and their families. It's high time the Welsh Government brought public funding for Wales’ children’s hospices in line with that provided to children’s hospices in the other UK nations.”