We have joined Wales's other children's hospice Tŷ Hafan to unfurl a giant butterfly, partly made by the children we care for, on the steps of the Senedd as we call again for the Welsh Government to commit to sustainable funding.

The 8 metre by 6 metre cloth #ReachEveryChild butterfly artwork is 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.

Tŷ Hafan and Tŷ Gobaith currently support one in 10 children diagnosed with a life-threatening 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.

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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.

Funding

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.

“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.”

A letter calling once again for sustainable funding for Tŷ Hafan and Tŷ Gobaith and signed by Irfon Rees and Andy Goldsmith 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 rely 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.

A lifeline

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.”

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.