A new support group for people with chronic pulmonary conditions launched on 21st November at the Clifton Neighbourhood Centre. The group aims to bring people together, build confidence, and create a space where living with a terminal diagnosis doesn’t have to feel isolating or overwhelming.
For one of its founders, the group is a direct result of his own life-changing diagnosis. We caught up with Kevin, to talk about his journey with Idiopathic Pulmonary Fibrosis (IPF) and the impact that his involvement with the SCL Active Lifestyles Team has had on his journey so far.
Kevin was diagnosed with IPF at the end of 2020. His diagnosis came after years of persistent coughing and an increase in breathlessness.
“I’d been trying to get fitter at the end of the Covid lockdown, by going for a walk in the morning and afternoon, but every time I exercised I was struggling with being out of breath. My wife said I’d been coughing for years, and that pushed me to get checked. The process was quite quick. They fast track your results if they suspect certain conditions. Before I knew it, I had a diagnosis of IPF.”
The news hit hard. “I went into a bit of a downward spiral,” he recalls. “IPF is a degenerative, life-limiting lung disease and when the news is broken to you it normally comes with a 3 -5 year life expectancy. Hearing that word, “terminal” can make your world feel like it’s getting smaller, very quickly.”
Everything began to shift for Kevin when he was referred to SCL’s Active Lifestyles Team, a move he now describes as a major turning point.
All I needed was a referral from my GP or Consultant
“When I started with Active Lifestyles, I was over nineteen stone. My life had just completely been turned on its head, and I didn’t know where to begin; especially with exercise. I didn’t know how to train or what was safe for me anymore. But from day one, the team were incredible.”
He met Gareth, a pulmonary rehab specialist within the team, whose support ended up going far beyond the walls of the gym.
Gareth taught me how to exercise safely. He showed me what I could still do, what I needed to be careful of, and how to work around breathlessness. It was really helpful having someone so knowledgeable right there in the gym with me. I didn’t need to worry. If I had a question, I could just ask it then and there.
“What surprised me the most was that he’s stayed in touch even now, after my rehab has ended. He has been a great support throughout my journey.”
For someone who had been frightened about exercising, this guidance became life-changing.
As Kevin’s condition progressed, his lung capacity reduced and he moved onto using mobile oxygen. With this change came another set of obstacles, so he returned to Active Lifestyles for a second course of rehab.
I didn’t realise you could do multiple rehab courses, but it was exactly what I needed. They taught me how to stay active with oxygen, how to adapt, and how to once again, feel comfortable and confident while exercising.
“Because the staff are specialists in pulmonary rehab and chronic lung conditions, they can help you with any questions you may have on the spot. That could include anything from concerns about breathlessness, how much exertion is safe, how to use the oxygen equipment properly, and how to pace activity without fear.
The team didn’t just teach me exercises, they taught me how to understand my condition. How to work with reduced oxygen and how to recognise my limits without letting fear or worries take over. They helped rebuild my confidence piece by piece.”
With the combination of exercise, professional guidance, and changes in diet, Kevin has now lost over three and a half stone, moving closer to his target weight of 15 stone; the required weight for if he should he ever need a lung transplant.
Kevin however, is hoping to avoid a transplant. His aim is to achieve the best quality of life possible, for as long as possible, while avoiding the risk of surgery altogether. But, more important than his weight loss, Kevin’s involvement with Active Lifestyles has helped him reclaim a sense of control.
While I can’t do very energetic exercise, regular exercise is key. Getting active again changed everything. It helped my mental health, my confidence, my knowledge. It reminded me, when I needed it most, that life doesn’t just stop.
Inspired by the Bolton Pulmonary Fibrosis support group, and bolstered by everything he learned and regained through Active Lifestyles; Kevin decided to try to form a group dedicated to setting up a Salford ILD Support group. With over 500 people with ILD in Salford, he saw a clear need for local connection, support and understanding. Along with 2 other local members of the Bolton Group (Charlie Twist and Albert Carter) and a specialist nurse from Salford Royal (Hayley Fox), who have all worked tirelessly, the Salford ILD Support Group has been brought into being.
Shared experience means everything. When someone else knows what you’re going through, it lifts a weight. The Bolton Group has always felt like a family, and that’s what I want to help build in Salford.
The new Salford group is now part of Salford CVS, and the long-term aim includes bringing in guest speakers, clinicians, mental health specialists; such as Karen Stansfield, a specialist counsellor in Palliative care, who is another person Kevin credits with helping him on his journey so far, and rehab professionals including the Pulmonary Rehab Team and Mobile Oxygen Team at Salford Royal Hospital, to share knowledge and answer questions, just like the Bolton IPF Support group and the team at Active Lifestyles did for him.
Kevin’s advice to anyone concerned about their breathing, coughing, or fatigue is simple:
“Please go and see your doctor. Even if you’re scared. The earlier you get checked the sooner you start treatment, and with conditions like IPF early treatment helps preserve lung capacity! There’s fast-track testing available now for people who are worried about their symptoms, and it can make a real difference in gaining access to the anti-fibrotic medicines that can prolong your life.
Even if it turns out there was something to be worried about, it’s not all darkness; there is light at the end of the tunnel! There’s some great support out there, like our group, that started on the 21st, and the Active Lifestyles Team from SCL.”
The next meetings of Salford ILD Support Group are on the 19th of December 2025 and 16th of January 2026 at St Anne’s Clifton Neighbourhood Centre, Manchester Road, Clifton, Manchester. M27 6PP between 2:30 pm and 4:30 pm.
Kevin’s story demonstrates the importance of support, a positive outlook and ongoing physical activity, even in the face of challenging circumstances. If Kevin’s story resonates with you, or challenges you may be facing, you can find more information about how to access the support of our Active Lifestyles Team below.
Find out More about Exercise on referral and the Active Lifestyles Team.
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