A man from Tyldesley has spoken about the support he has received from Wigan & Leigh Hospice as he navigates life with Idiopathic Pulmonary Fibrosis (IPF).
Seeking support
John* was diagnosed with IPF four years ago. Since then, he and his wife have attended regular appointments with the WWL Palliative Care Support Team every two to three months.
During one of those routine conversations, John mentioned to his nurse, Sarah, that he felt it might help to speak with someone independent about how he was coping.
“I’d mentioned counselling,” he explained. “Sarah said she’d sort it, and the referral went through WHISPER. Not long after, I got a letter saying the team had recommended district nurse visits every four weeks, as well as counselling. That’s when I first came into direct contact with the hospice.”
John attended an initial appointment to discuss counselling, but at that stage decided not to go ahead. Instead, the hospice team asked whether he had ever considered complementary therapies – something he hadn’t previously explored.
An hour of calm
John agreed to try a session and was introduced to Sophia, a complementary therapist at the hospice. What began as a tentative step soon became a meaningful part of his routine.
“I’ve now had eight sessions with Sophia,” he said. “They were beneficial. At one level, it was an hour of relaxation, but it was also an hour of calmness.”
Each session began with a conversation about how he was feeling and what therapy might help most that day.
“I found the shoulder massage worked particularly well,” he said. “Sophia talked me through everything. It was very person-centred.”
John’s wife accompanied him to the hospice for his first appointment, planning simply to wait and drive him home. Instead, she found her own moment of peace.
“When he went in, I walked around the pond,” she said. “I found the grounds so relaxing because I didn’t have anything to do. I was forced to slow down, and it was really good for me. The building is so interesting and calming.”
John smiled as he recalled the same impression.
“The hospice was how I expected it to be,” he said. “The pond looks good – and we even picked up the bird recognition book.”
A joined-up approach
For John, the hospice has become one part of a wider network of support that helps him manage his condition.
“The hospice has provided a specific service within a wide group of people who help me,” he said. “There are lots of points of contact between me and healthcare services, and everything seems very well connected. It’s a joined-up service.”
As his complementary therapy sessions continued, John and Sophia revisited the idea of counselling. This time, he felt ready.
“I said it probably would be useful,” he explained. “Sophia referred me back to the team, the referral was accepted again, and I’m now on the list.”
Changing perceptions
John hopes that sharing his experience will help others understand what hospice care can offer – long before the end of life.
“Don’t equate palliative care with end-of-life care,” he said. “The word ‘hospice’ doesn’t necessarily mean that. It’s a building where you meet people to chat. It’s support. It’s connection.”
*To respect the privacy wishes of those involved, some names have been changed.