Today, Wales’ children’s hospices are expected to showcase a giant butterfly, a symbol of their plea for increased funding, at the Senedd.
On June 18, the two hospices, Tŷ Hafan and Tŷ Gobaith will display the butterfly, an eight by six metre artwork, made partly by the children they care for.
The artwork, dubbed #ReachEveryChild butterfly, consists of 3,655 small butterflies, each one signifying a child in Wales with a life-shortening condition.
Tŷ Hafan and Tŷ Gobaith currently extend support to one in 10 children diagnosed with a life-shortening condition across Wales.
The display of the butterfly is part of their five year campaign, where they’re urging the Welsh Government to commit to funding 21 per cent of their annual care costs.
As of now, children’s hospices in England, Northern Ireland and Scotland receive between 30 per cent and 50 per cent of their annual care costs from their respective governments, while Tŷ Hafan and Tŷ Gobaith only get 12 per cent of their joint annual care costs from the Welsh Government.
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."
Andy Goldsmith, chief executive of Tŷ Gobaith, echoed Mr Rees’s remarks, emphasizing the crucial support the hospices provide to struggling families.
He 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."
One child who has hospice care at Tŷ Gobaith is nine-year-old Bedwyr Davies from Llanrwst, who was was diagnosed with the genetic condition Coffin-Siris syndrome.
Bedwyr's mum Nerys Davies shared her experience (Image: Tŷ Gobaith)
Mum Nerys Davies is backing the campaign and she has said: "
She said: "Being parents of a child with complex needs is hard.
"It really is life changing."
She added: "We need the respite to ensure we are physically and mentally able to be there for our children."
Jonathan Bugg, father of Daniel who passed away at Tŷ Hafan in March this year, said: "Dying isn’t dignified.
"But Tŷ Hafan gave Daniel dignity."
He added: "“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."
The fight for funding goes on today as welfare representatives, including Mr Rees, Andy Goldsmith and Mr and Mrs Bugg, will be at Cardiff Bay from 10.30am until 12.30pm on Tuesday, 18 June, presenting the #ReachEveryChild butterfly emblem to the public.
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