Two thirds of people living in rural areas struggle to access end of life care

Barney said: “We always dreamed of raising our children in the countryside, but the reality of caring for a profoundly disabled child in such a remote location has been incredibly tough. We’re over an hour from the nearest hospital, which is a constant worry when our son Rafferty is unwell. A landslip has cut off our main route, resulting in a much longer trek using single-track, gated roads.

"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 in Carlisle 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.” 

Gabriella said: “We moved from London to the countryside hoping for a better quality of life, but it did make some aspects of dealing with Thea’s disabilities more difficult. Transport was a constant challenge - getting her out and about, finding a suitable wheelchair - and she was often in discomfort and would frequently get sick when we travelled because we had to use the car more and she was not allowed a wheelchair accessible vehicle. 

“In bigger cities, Thea was more comfortable because public transport was much better and there is no need for a car. Services and support and groups for profoundly disabled children are more common and easier to access. In the countryside there isn’t much at all for our children and it can be really isolating. 

“Forget Me Not Children’s Hospice and Hollybank School were a lifeline for us, but they are both about an hour away, and not accessible by public transport, which made things even harder. On top of that, our household bills increased significantly because of the specialist equipment Thea needed, which was expensive to run.” 

Maggie*, who lives in Wales, said: 

“My husband was diagnosed with prostate and bladder cancer. He had to travel an hour and a half each way for treatment, which was gruelling. Towards the end, I was driving him myself. I remember once going from chemist to chemist trying to find his pain relief. It’s little things like that which make it so hard when you're already caring for someone you love.” 

Sarah*, from Northern Ireland, said: 

“I lost my dad a couple of years ago, and the end of life care just wasn’t there. We live 30 miles from the nearest hospital with no buses and barely any carers. In his final week, I had just six hours of sleep as there was no night support.” 

Diane*, from Northern Ireland, said: 

“My dad had advanced prostate cancer, and we cared for him at home. We’re in a rural area, and getting support felt like a constant battle: chasing equipment, trying to get carers, not being shown how to use things like the hoist or administer morphine. We felt completely alone." 

Gail*, from Scotland said:

“My uncle died bolt upright, extremely distressed, breathless, terrified but staring at his cattle through the window, which his son had moved around for him. Which was what he wanted. But I don't think he really chose place over palliation. I think if you'd have known that he'd have died so badly he wouldn't have chosen place. And I don't know why it has to be one or the other. I find that very distressing.” 

Claire*, a parent of a child with a life-limiting condition who lives on a Scottish island said:

“There's so much support at the hospice, the hospices are amazing. They are second to none. But when you're 300 miles away, there's very little that you can do to tap into that community.”