The parents of 16-year-old Daniel Bugg say hospice care at Tŷ Hafan transformed his final three months, but the family only learned about the service by chance after practical struggles at home. A joint report from Wales' children's hospices finds families often face a fragmented system and reach crisis before receiving support, while health professionals report difficulty initiating conversations about hospice care. The report calls for formal partnerships, better training and earlier access, and the Welsh government has pledged work on sustainable funding and fair access.
Chance Discovery: Hospice Care Transformed 16-Year-Old Daniel's Final Months
Catherine and Jonathan's son, Daniel, died from cancer when he was 16 [Venture Studios Cardiff]
Daniel Bugg was 16 when he died from osteosarcoma, but his parents say the care he received at a children's hospice transformed his final three months. His family only learned that hospice support was available after they began taking him to a local leisure centre for a shower because he could no longer manage the stairs at home.
From Crisis To Comfort
Daniel, from Barry, was diagnosed shortly after his 14th birthday in 2021. After his right leg was amputated above the knee two years later, the practical challenges of daily life prompted an occupational therapist to tell the family about Tŷ Hafan children's hospice in the Vale of Glamorgan. Daniel first visited in August 2023 and moved to full-time hospice care in December. He died on St David's Day, 1 March 2024.
"It was somewhere that Daniel, in his last months, grew to love — it didn't feel like somewhere he went to die, it was somewhere he went to live for his final months," said his father, Jonathan. His mother, Catherine, added, "I can't even begin to imagine it without that gift of Tŷ Hafan. The team guided us through the fun and the awful."
Systemic Gaps Exposed
A joint report from Wales' two children's hospices — Tŷ Hafan and Tŷ Gobaith in Conwy — found that many families are "routinely" forced to navigate a fragmented health and social care system and often only get help once they reach crisis point. The review highlighted that healthcare professionals do not always feel equipped to have difficult conversations about hospice care and that a lack of clear information from the outset means many families miss out entirely.
Daniel died on St David's Day in 2024, around three months after he moved into Ty Hafan [Family photo]
Calls For Change
Hospice leaders want closer partnerships with health and care services, better training and induction for frontline staff, and more opportunities for professionals to visit hospices and see the support on offer. Tracy Jones, director of family wellbeing and outreach services at Tŷ Hafan, said the sector needs to help professionals feel more confident when discussing hospice options with families facing life-shortening diagnoses.
A spokesperson for the Children's Commissioner for Wales said Daniel's story "closely echoes" what many families report and called for a joined-up system where health, social care, education and other services work seamlessly. The Welsh government has said it will work with health boards, care providers and stakeholders to develop a sustainable, long-term funding model and a new hospice commissioning approach to promote fair access, sustainability and high-quality care across Wales.
What This Means: The report urges urgent, system-wide reform so families can access hospice support earlier and more easily, and recommends formal partnerships and improved training so frontline staff can signpost families without delay.
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