Daniel's Journey and Hospice Discovery
Daniel Bugg was only 16 years old when he passed away from cancer. His last three months were profoundly impacted by the care he received at a children's hospice, according to his parents, Catherine and Jonathan. However, they only became aware of the hospice's support after they began taking Daniel to a local leisure centre for showers, as he was no longer able to manage the stairs at home.
His experience reflects that of many young people with life-shortening conditions who face challenges due to limited awareness about hospice care, a new report from Wales' child hospices reveals. The Welsh government has expressed its commitment to ensuring that individuals receive the care they need, including hospice services for children.
Diagnosis and Challenges at Home
Daniel, who lived in Barry, was diagnosed with osteosarcoma in 2021 shortly after turning 14. Two years later, after his right leg was amputated above the knee, his parents found themselves taking him to their local leisure centre for showers because he could no longer access the family bathroom upstairs.
It was during this time that an occupational therapist informed them about Tŷ Hafan, a children's hospice located in the Vale of Glamorgan. Daniel subsequently spent the final months of his life there.
Impact of Hospice Care on the Family
Jonathan and Catherine emphasized that the hospice care allowed them to focus entirely on being loving parents, cherishing every moment with Daniel, his brother, and two sisters.
"When you say, 'it's where children are ill and go to die' you expect it to be gloomy and everyone walking around with sad faces [but] it's just an amazing place," said Jonathan, 61.
"It was somewhere that Daniel, in his last months, grew to love and instead of it being that place where children go to die, it was that place where our son went to live for the last months of his life," he added.
"That difference doesn't sound as huge as it actually was, but that's the best way I can say it."
Daniel first visited the hospice in August 2023 and chose to receive full-time care there starting in December. He passed away on St David's Day, 1 March 2024.
"I can't even begin to imagine it without that gift of Ty Hafan, without that team around us who guided us through the fun and the awful," said Catherine.
"I can't imagine if we didn't have them what this would have looked like for us and so what this looks like for other families, it's almost too awful to try and imagine really."
State of Children's Hospice Care in Wales
Wales is home to two children's hospices: Tŷ Hafan and Tŷ Gobaith in Conwy. A joint report has highlighted that families are often left to navigate a fragmented and complex health and social care system, frequently reaching crisis points before receiving support.
The report found that healthcare professionals sometimes lack confidence in discussing hospice care with families and require additional support to manage these difficult conversations. It also noted that insufficient information from the outset results in many families missing out on available support.
The report calls for urgent, system-wide reforms to enable families to access help earlier and more easily.
Challenges in Communication and Proposed Solutions
Tracy Jones, director of family wellbeing and outreach services at Tŷ Hafan, acknowledged the difficulty healthcare professionals face when introducing hospice care to families of children with life-shortening conditions.
"These are not everyday conversations," Tracy said.
"Having that conversation, to say to a family, 'We think your child may not live into adulthood, have you thought about using a hospice service?' is a really difficult conversation to have and that's one of the things that comes out really strongly.
What can we be doing as a sector to help the professionals who are in daily contact with these families feel more confident about having those conversations?"
She expressed hope that the report's publication would foster a formal partnership between health and care professionals and hospices. She suggested that awareness of hospice services should be integrated into staff induction programs and that professionals working with families should be encouraged to visit hospices to better understand their offerings.
Calls for Integrated Support Systems
A spokesperson for the children's commissioner for Wales noted that Daniel's family's experience "closely echoes what we have heard time and time again for families with children with complex health as well as life-shortening conditions."
"What families need is a joined up system where health, social care, education and other services work seamlessly together. Families should not have to fight for the care and support their children need."
Welsh Government Commitment
The Welsh government affirmed its commitment to collaborating with health boards, care providers, and other stakeholders to develop a sustainable, long-term funding model for hospice care.
"The new hospice commissioning approach seeks to promote fair access, long-term sustainability and high-quality, compassionate care across Wales," the government added.
