Barney and Harvie Strange, who live in rural Cumbria, rely on Jigsaw to give their son Rafferty, the care and support he needs.
Rafferty, aged two, has a rare muscular condition which means he is quadriplegic and requires extensive support, including a ventilator and feeding pump. He also has regular appointments and hospital admissions.
The family live in a small cottage on a hillside in East Cumbria. Alder Hey Children’s Hospital is two and a half hours away and their nearest hospital in Lancaster is over an hour – something that Barney says is always in the back of their minds when Rafferty is unwell. Barney and Harvie have also struggled to find carers for Rafferty and say it can be difficult for visitors to reach them at their rural home.
In 2024 a landslip resulted in the closure of the main route out of the dale where they live. What was a 20-minute journey to their nearest large village where Rafferty’s carer lives, Barney and Harvie work, and their older children go to nursery, turned into a 50-minute trip via a single-track and gated roads. An additional 10 to 15 hours in the car each week increased Rafferty’s risk of aspiration and other complications.
Barney, who works as a paramedic, set up a campaign group to urge the council to act and work has now begun to reopen the route.
To raise awareness of the issues rural families face when accessing end-of-life care, Barney also went to parliament with a delegation from the charity Hospice UK, that represents hospices across the UK including Jigsaw, and our Chief Executive, Julie Clayton, to lobby the government.
Barney spoke to a group of MPs as part of the launch of a report called Bringing Care Closer to Home, that shines a light on the stark realities faced by remote and rural families, where long, costly journeys, delays in pain relief, and a shortage of skilled staff can stand in the way of the end-of-life care they need and deserve. Not only does the report call for urgent action but sets out the way forward for building a system that delivers high-quality end-of-life care for everyone, wherever they live.
Julie also spoke directly to MPs and reiterated feedback from those on the frontline delivering end-of-life care across Cumbria, including community teams, district nurses and our hospice at home colleagues. The Bringing Care Closer to Home report is due to be considered as part of the government’s 10-year NHS plan.
How Jigsaw supports Barney and Harvie
Barney says that after a difficult couple of years, the help from Jigsaw children’s hospice in Carlisle, is ‘the single best thing’ that has happened to the family.
He said: “You get helped out by lots of charities but no one greater than Jigsaw they have been phenomenal.
“When we got accepted into Jigsaw, we knew it would make a significant difference just to have a little bit of respite and it’s helped our other two children too, but Jigsaw represents so much more than respite. The staff are incredible in every way – compassionate, kind, enthusiastic and knowledgeable.
“Practically, they’re just as wonderful, trying to get us in on cancellations and allowing us to stay in the apartment above the hospice. And the family days are not only brilliant for all our children, but an excellent opportunity for psychological and peer support. Meeting others in similar situations is very comforting.
“Rafferty is supported and viewed as part of a family and not as a single patient, the power of which is almost impossible to describe in words.”
