Fair and sustainable funding manifesto pledge ask by Wales’ two children’s hospices

Wales’ two children’s hospices are calling on all Welsh political parties to pledge to stand up for children with life-shortening conditions ahead of this year’s national Children’s Hospice Week. 

Tŷ Hafan and Tŷ Gobaith want politicians to pledge to include fair and sustainable funding for children’s hospices in their party manifestos  – committing to funding at least 25% of care costs in 2025, rising to 30% in 2030.

In real terms, this pledge means raising statutory support for children’s hospices from the £2.3 million they expect to receive in 2025/26 to around £3.2 million in the same year. And then stepping this up to just under £5 million by 2030/31. It’s a staged uplift of only £2.7 million over four years, and yet it would give Wales’s children’s hospices the certainty they need to recruit and retain the specialist teams that children and families rely on every day. 

Tŷ Gobaith Chief Executive Andy Goldsmith explained that the number of children with life-threatening conditions in Wales has increased significantly over the last decade. These children have increasingly complex medical needs, and their families are facing growing challenges, as NHS and local authority services come under increasing pressure.

“Across Wales children with life-threatening conditions are not getting the support that they and their families need, and the children’s hospices are committed to making sure that every child and family who could benefit from our support is able to access services,” he added.

“To achieve this, we need to have confidence in our future funding to invest in services and to employ the highly skilled nurses and health care professionals  required. That is why fair and sustainable funding is so vital.

“We want to bring essential care closer to home, particularly in remote rural communities. At the moment accessing support can be a postcode lottery and that is wrong. We need to help every child with a life-threatening condition to live their best life, receive the best care at end of life, and to support families to go on living beyond.”

Tŷ Hafan Chief Executive Irfon Rees agreed: “This is not about children’s hospices competing with the NHS for funding. The children’s hospices in Wales play a critical role in the health and wellbeing of some of Wales most vulnerable and medically complex children.  With most of the hospice care funded by charitable donations, the non-profit, charitable children’s hospices are a cost effective and important partner to the NHS and local government.

“With costs rising and increasing need, we are asking for ever more of our incredible donors and supporters and we believe it is only fair that the next Welsh Government commit to this partnership and to strike a fair balance between state funding and charitable donations.

“We are incredibly grateful to the Welsh Government for the one-off funding in 2024/25 and the uplift in funding for hospices in the 2025/26 budget, but there is no certainty of this funding beyond this Senedd.”

Children’s Hospice Week runs from June 16 – 22 this year, by which time the two hospices hope at least one of the leading political parties will have made the pledge to put children with life-shortening conditions first.

Pictured: Tŷ Hafan nurse Emma with Talis and his dad Ryan

• Tŷ Hafan is one of only two children’s hospices in Wales.
• Life-shortened means that the child or young person is not expected to live beyond 18 years old.  The average age of a child referred to Tŷ Hafan between 2019 and 2024 was two years old.
• Tŷ Hafan supports around 300 children with life-shortening conditions and around 3,000 family members each year.
• Currently Tŷ Hafan is only able to help 1 in 10 families who need our help.
• When a child’s life will be short no family should have to live it on their own.
• Tŷ Hafan provides specialist palliative care addressing the physical, emotional, social and spiritual needs of each member of the family. From diagnosis to bereavement, Tŷ Hafan is there for the family as long as they need us, through life, death and beyond.
• Tŷ Hafan offers families end-of-life care, and services such as family support, complementary therapy, music therapy and outreach play both within the hospice and in the family home. 
• A child and his/her family can be referred to Tŷ Hafan at the time of diagnosis with care and support being provided throughout the course of the child’s condition, which can be for many years.  
• The children and young people who access Tŷ Hafan’s services suffer from a broad range of conditions, many with profound and complex medical needs. Some of the conditions are so rare they haven’t been named.  
• Our care costs this year are £6.7m to provide Tŷ Hafan’s care services to children and young people with life-limiting conditions and their families, at our hospice in Sully (near Cardiff) and in homes and community settings across Wales.
• Only 12.4% of those costs are covered by statutory funding, and this proportion is falling.
• More than 80% of Tŷ Hafan’s care costs are generated by donations from the generous public in Wales and beyond, via a range of fundraising activities – including community and corporate events, legacies, and its commercial activities such as its lottery and shops.

For more information and to make a donation go to www.tyhafan.org