ordinary people, extraordinary lives

Children’s Hospice Week (Monday 21 to Sunday 27 June) is the only awareness and fundraising week dedicated to children with life-limiting conditions and the services that support them. It is always a week to mark in the calendar, with plenty of activities organised for our families.

This year we joined with Tyˆ Gobaith, the children’s hospice in North Wales, to use Children’s Hospice Week to acknowledge the immense resilience and bravery of the 430 children with a lifelimiting condition and their families across Wales that we support – people for whom everyday living often presents multiple and complex challenges, challenges made even harder by the pandemic. Speaking during Children’s Hospice Week, Maria Timon Samra, Chief Executive of Tyˆ Hafan, said: “Families of a child with a lifelimiting 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 exponentially. “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.

Andy Goldsmith, Chief Executive of Tyˆ Gobaith, added: “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 Tyˆ Hafan and Tyˆ 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,” said Andy Goldsmith. “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,” said Maria Timon Samra, “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”.

To find out more about the work of Tyˆ Hafan and Tyˆ Gobaith, visit tyhafan.org/lifeline-fund.

"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."

tyˆ hafan scout group awarded queen’s award for voluntary service

Congratulations to the Tyˆ Hafan Scout Group, the first Scout Group to be based in a children’s hospice in the UK, for being honoured with The Queen’s Award for Voluntary Service, the highest award a voluntary group can receive in the UK.

Set up 13 years ago, Tyˆ Hafan Scout Group has provided opportunities to learn and grow in a fun and inclusive environment for more than 100 children since it started and is believed to be still the only Scout group to be based in a children’s hospice in the UK. Now, the group, including volunteer leaders Ruth Weltch and Steve Barkley, has been recognised for their outstanding contribution to the community. Parent Kyle Jones, said: “Our son Christopher has been attending the Tyˆ Hafan Scout Group for over a year. He can be himself and activities are adapted to ensure inclusivity. The group go above and beyond to include all the children despite the capabilities and helps our son grow in confidence and new skills.” Visit tyhafan.org/latest-news to keep up to date with what's going on at Tyˆ Hafan.