Wales’ two children’s hospices unfurled a giant butterfly, partly made by the children they care for, on the steps of the Senedd as they called again for the Welsh Government to commit to sustainable funding.
The cloth #ReachEveryChild butterfly artwork was made up of 3,655 small butterflies, which represent the number of children with life-shortening conditions in Wales and has been made by children currently supported from both hospices, staff and volunteers.
The hospices would like to thank the 14 MSs who supported Children’s Hospice Week, including Eluned Morgan, Dawn Bowden, Natasha Ashgar, Tom Giffard, Altaf Hussain, Heledd Fychan, Rhys ab Owen, John Griffiths and Sarah Murphy from across South and Mid Wales.
North and West Wales MSs who showed their support were: Sam Rowlands, Janet Finch-Saunders, Gareth Davies, Russell George and Rhun ap Iorwerth.
Tŷ Hafan and Tŷ Gobaith currently support one in 10 children diagnosed with a life-shortening condition across Wales. Displaying their #ReachEveryChild butterfly on the steps of the Senedd was 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.
Tŷ Hafan and Tŷ Gobaith currently receive just 12% of their joint annual care costs on a recurrent basis from the Welsh Government.
Eluned Morgan, MS for Mid & West Wales and Minister for Health and Social Services, talks with our #ReachEveryChild campaign team on the steps on the Senedd during Children’s Hospice Week 2024
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, 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.
“That’s why we called 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.”
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 and Baptist Minister.
“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.”
A letter calling once again for sustainable funding for Tŷ Hafan and Tŷ Gobaith and signed by Irfon Rees and Andy Goldsmith has been sent to the First Minister Vaughan Gething and Eluned Morgan, Minister for Health and Social Services.
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.
Tŷ Hafan Chief Executive Irfon Rees in conversation with Rhun ap Iorwerth, MS for Ynys Môn and leader of Plaid Cymru
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