“They’ve done everything they can to help us feel less alone” - Barney and Rafferty’s story

Barney and his wife Harvie live with their three young children in a small village in East Cumbria, nestled within the Yorkshire Dales. Their youngest son, Rafferty, is 24 months old and has a rare muscular condition that means he is quadriplegic, is tube-fed, and has significant difficulties with his breathing.

Rafferty receives respite care from Jigsaw Children’s Hospice in Carlisle – around an hour and a half away – as well as specialist care at hospitals in Liverpool, Lancaster, and Kendal.

Last year, a landslip shut the family’s main road, turning what used to be a 20-minute journey into a 50-minute detour along single-track, gated roads.

Barney said: “It’s not just the time; it’s the impact on Rafferty’s health and our ability to access essential care. Finding carers locally is difficult, and harsh winters make it even harder for anyone to reach us. Despite all this, Jigsaw Children’s Hospice has been a vital source of support. Although it’s an hour and a half away, they’ve done everything they can to help us feel less alone.”

Barney, who works as a paramedic, travelled with Harvie and Rafferty to Parliament to share their experiences as part of Hospice UK’s Bringing Care Closer to Home report launch. The report highlights the deep inequalities faced by people in rural and island communities who are seriously ill or nearing the end of life.

“People in rural areas like ours often face an impossible choice - stay at home, or get the care they need, but not both,” Barney said.

Hospice UK’s research found that people in these communities face barriers including long travel distances, unreliable transport, staff shortages, and delays accessing medication. Unpaid carers like Barney and Harvie are often left exhausted and isolated.

Yet despite these challenges, rural communities are resourceful and resilient, with friends, neighbours and local groups stepping in to help where formal care is stretched.