Calls for more Welsh Government funding as bravery of children and families celebrated during Children’s Hospice Week in Wales

Wales’ two children’s hospices are joining forces to celebrate the bravery of the children and families they support to mark national Children’s Hospice Week. (21 June to 27 June)

Tŷ Gobaith in North Wales and Tŷ Hafan in South Wales are currently supporting more than 430 children living with a terminal illness across Wales.

They want to use next week to focus on the immense resilience and bravery of the children and families, people for whom everyday living often presents multiple and complex challenges, challenges made even harder by the pandemic. Children like Matilda Hughes and her parents Michelle and Pete from Llandudno.

Matilda was discharged from hospital just days into lockdown after a major operation. Shielding and unable to access the help of their close-knit family and friends they turned to Tŷ Gobaith for help. The support they received helped the family to feel in control, safe and not alone.

Andy Goldsmith, Chief Executive of Tŷ Gobaith, explained: “We decided to use the occasion of Children’s Hospice Week to draw attention to these remarkable children and their families, to acknowledge just how extraordinary they are, all day, every day often with very little support, and how we, the children’s hospices in Wales are calling on the Welsh Government to provide families with the support they deserve and often desperately need, even more so since March 2020 when all of our worlds turned upside down.

“We also want to use this occasion to thank the thousands of individuals, clubs and societies, businesses and organisations that have supported Tŷ Hafan and Tŷ Gobaith so generously throughout some of our most difficult times – we thank them from the bottom of our hearts.

“We are always delighted when someone would like to help us in some way and we are always open to new offers and ideas.”

Maria Timon Samra, Chief Executive of Tŷ Hafan, added: “Families of a child with a life-limiting condition are already challenged in terms of how they live their everyday lives.

“They are ordinary people, living extraordinary lives. The coronavirus pandemic has multiplied those challenges to the nth degree.

“While so very many of us may have had to juggle home-working and home-schooling amid concerns about the impact of Covid on our families and loved ones, this is really put into perspective when we think of the parents of our hospice children.

“Over the past year, they have also had to be primary care givers for their life-limited child 24/7, without the usual access to support networks. Their usual opportunities for relief have been cut off due to the various restrictions and shielding requirements.

“Our hospices, which our families have described as their ‘lifeline’ have stayed open to provide crisis care and end of life support throughout the pandemic and are carefully and safely welcoming more families back.

“Demand for children’s palliative care services in Wales continues to increase and we are constantly evolving the services of our hospices to try to meet this need.

“While we were delighted to hear that our friends in the children’s hospice sector in Scotland will continue to benefit from 50% government funding, our charities receive less than 10% Welsh government funding. This makes it very difficult to plan ahead, particularly in the current climate.”

Andy Goldsmith added: “We now need step up our ask for fair and sustainable funding for children’s hospices in Wales so that Welsh children and their families are not unfairly disadvantaged.

“We are calling on the Welsh government to establish a Lifeline Fund”.