Patient Paul McGinley talks about his key role in shaping services for young people.
“It’s good to help other people, for me volunteering is very rewarding and you know you’re making a difference to people’s lives.”
Those are the words of Paul McGinley who does bucket collections for the hospice and visits youngsters on the ward at the Royal Hospital for Children in Glasgow.
They’re heart-warming comments to come from someone who gives up his time to help others. All the more stirring when you consider the 37-year-old from Muirend in the south side of the city is in a wheelchair and has a rare condition that affects one in 3500. Paul was diagnosed with Duchenne muscular dystrophy when he was eight years old and kept falling over in the playground.
“The teachers thought I was being lazy but they didn’t know at that time what was wrong, it’s a rare condition,” he explains.
“I’s a weakness in the muscles. I was still walking until I was 18, and often other people are in a wheelchair by the age of 10.
So I’ve managed to keep going. I’m not doing too badly, I’m a bit more able- bodied than some. A lot of other people struggle to move about. I try and keep my independence as much as I can.”
He might get around in a wheelchair but, as Paul says, he has clearly held on to his independence as much as possible. He drives an adapted van and, a big football fan, hits the road to regularly watch Celtic play. It also means he can get out to volunteer for the hospice and play wheelchair football.
He particularly enjoys every Monday night when he visits the wards at the Royal Hospital for Children in Glasgow.
“I talk to the kids and play games with them, it’s really helpful and it’s an eye opener to them. A little boy asked me last week why I was in a wheelchair and I could tell my story,” he says.
“There’s a lot of things I can’t do but I’m not quiet, I can talk away and that helps.”
Over the years Paul has received respite care at the Children’s Hospice Association Scotland (CHAS). With changes in legislation that affect the services that can be accessed by different age groups, he is one of the first patients to transition to The Prince & Princess of Wales Hospice.
He is playing a key role in the arrangements made to look after younger patients at Carlton Place and in our new home, advising on what support and services are needed.
“This has all happened at the right time because Bellahouston will be a new facility, so it’s good that I’m working with the hospice,” he says.
“The hospice is helping me and taking on board my opinions, which should help other younger patients in the future. When the new hospice opens it will be able to support me.”
Paul lives at home with his parents Gerry and Giorgie. Now he’s working with the hospice, it is extending its care to Paul’s family and his mum has visited Carlton Place to receive complementary therapies.
“I’ve always known about the hospice, my mum’s uncle was a patient. A lot of people think it’s only for old people,” adds Paul.
“It’s good that I can help develop the services for younger people. I want to help people understand that the hospice does work with younger people. A lot of people don’t know that.”
Jane Miller, the hospice’s clinical nurse specialist for outpatients, sees Paul every four to six weeks to discuss his symptoms or any issues, whether they be physical, psychological or social. Providing patient- centred care is paramount and Paul is the perfect example of that.
“My main communication with him is email and that’s different from most other patients, who would be by telephone or letter,” she says. “The first time Paul came for an assessment he drove to the hospice and his van door broke, it wouldn’t close, so I did the assessment in his van. He always laughs at that.
“He’s feeling very supported that he can come into adult hospice care and we’re delighted to be able to offer that.”