Children’s hospices urge Welsh Government to provide ‘sustainable’ funding

Wales’ two children’s hospices are set to unfurl a giant butterfly, partly made by the children they care for, on the steps of the Senedd.

It comes as they call again for the Welsh Government to commit to sustainable funding to allow them to provide services.

Back in January, our sister site Wrexham.com reported how 90% of hospices in Wales “are budgeting for a deficit”.

At the time, ministers were asked to address “immediate funding challenges” and a £4m boost was announced in April.

Now, a butterfly artwork, made up of 3,655 small butterflies which represent the number of children with life-shortening conditions in Wales, is being displayed to highlight funding issues.

Tŷ Gobaith near Conwy and Tŷ Hafan in Penarth currently support one in 10 children diagnosed with a life-shortening condition across Wales.

Displaying their #ReachEveryChild butterfly on the steps of the Senedd is the latest move in their five-year campaign to get the Welsh Government to commit to funding 21% of their annual care costs.

Currently children’s hospices in England, Northern Ireland and Scotland receive between 30% and 50% of their annual care costs from their respective governments.

Meanwhile, Tŷ Hafan and Tŷ Gobaith receive just 12% of their joint annual care costs on a recurrent basis from the Welsh Government.

Andy Goldsmith, chief executive of Tŷ Gobaith, said: “We know we can do more. We know we must do more to reach the 3,655 families who have had to have the conversation you never want to have and are desperately seeking support.

“We know we can provide support, services and smiles to more of the 3,655 families who are frightened, isolated, overwhelmed and face each day fearing it could be their child’s last, services that families call their lifeline.

“This Children’s Hospice Week we are calling on the government to provide us with the support, help and funds so that we will be here for every child and family who turn to us. To fulfil that promise. To give us the sustainable funding and the secure future to support every child and family that need us, today and in the future.”

Irfon Rees, chief executive of Tŷ Hafan, said: “In 2021/22 Welsh Government met our ask to fund 21% of our care costs for Wales’ two children’s hospices. However, in real terms, this recurrent funding has since fallen to just under 12% of hospice care costs.

“In 2023 we launched the ‘Trends in Prevalence and Complexity Report’. That report showed there are 3,655 children in Wales who have a life-shortening condition. A number that has been increasing for years and remains on an upward trajectory.

“We need Welsh Government funding to keep pace with the need for, and costs of, our services.”

A letter signed by Mr Goldsmith and Mr Rees was sent to the First Minister Vaughan Gething and Eluned Morgan, Minister for Health and Social Services, on June 5.

One of the children who relies on hospice care at Tŷ Gobaith is nine-year-old Bedwyr Davies from Llanrwst.

Bedwyr was diagnosed with the genetic condition Coffin-Siris syndrome, a condition which causes significant learning disability. He is also tube fed, has respiratory problems and cannot speak.

Mum Nerys Davies says: “Being parents of a child with complex needs is hard. It really is life changing.

“Gone are the days I can pop to the shop for milk as outing needs to be planned. Dinners are rushed to allow you can give medications, watch over them or see to their personal care. Sleep is disturbed and nights are long and frightening when they’re unwell.

“Respite care allows us to be spontaneous. To go for a walk in the woods, go shopping, meet family and friends for lunch. Respite gives us the opportunity to have a hot meal without interruptions, a good night’s sleep knowing Tŷ Gobaith staff are there looking after your child and the opportunity to recharge your batteries as you never know what is around the corner.

“When our children are poorly the amount of care we parents undertake at home or even at hospital is immense. We need the respite to ensure we are physically and mentally able to be there for our children. Without respite many families would end up in crisis.

“My wish would be that each and every family with a similar situation have the support of their children’s hospice, as it really does makes a difference to us all.”

Barry resident Jonathan Bugg’s son Daniel was diagnosed with cancer two years ago and last August was told it was terminal. He died at Tŷ Hafan on March 1 this year aged 16.

“Dying isn’t dignified. But Tŷ Hafan gave Daniel dignity,” says Daniel’s father, Jonathan, a former manager at Cardiff Wales Airport. “Tŷ Hafan gave him time with his family and my wife Catherine and I could be his mum and dad, not his carers. Hospitals can be quite impersonal – but Tŷ Hafan made sure that he was Daniel right to the end.

“I would not wish our experience on anyone. But for anyone who does have to go through our experience I hope that they have Tŷ Hafan to help them.”

The #ReachEveryChild butterfly emblem took three weeks to make and features 404 coloured fabric butterflies, each of which was uniquely decorated by children currently being cared for by Tŷ Hafan and Tŷ Gobaith.

The remaining 3,251 butterflies, representing those children with a life-shortening condition in Wales whom Tŷ Hafan and Tŷ Gobaith are not currently able to reach, were painstakingly stencilled on in grey paint by volunteers from a range of companies who support the children’s hospices.