When you live with persistent pain, it can be hard to imagine anything helping, let alone something as simple as a regular monthly meet-up.
But in communities across Somerset, Pain Cafés are offering exactly that; a place to connect, learn, and find new ways to live well with pain.
Sue Crisfield, a Social Prescribing Coordinator in South Somerset, knows this all too well. She’s not only the driving force behind the first Pain Cafés in South Somerset she also lives with persistent, long-term pain herself.
At 63, Sue has spent most of her career supporting others, first as a youth and community worker, and more recently in social prescribing. But in 2016, she developed osteoarthritis. A year later, she began living with Burning Mouth Syndrome, a rare and painful nerve condition. At its worst, she says, “it was isolating, overwhelming, and relentless”.
“It took a couple of years to get a diagnosis,” Sue says. “It was a very difficult time, which really affected my mental health. I was overwhelmed by the pain, it dominated every waking moment. I was very miserable, on the edge of tears, and I isolated myself.”
Everything changed when she took part in the Live Well with Pain: Ten Footsteps training; first as a participant, and later as a trainer. Through the programme, she learned how to shift her mindset, manage flare-ups, and rebuild her confidence. It gave her the tools she’d been missing, and a vision for what could help others too.
That idea became the starting point for the first Pain Café in Somerset. “I knew from my background that peer support works. People need to know they’re not on their own. I went to a pain conference in Cornwall where they were running Pain Cafes. I thought it was a brilliant idea, so stole it!” Sue laughs.
What are Pain Cafes?
Pain Cafés are monthly drop-in groups, open to anyone living with long-term pain and registered with the relevant GP practice in the area that the group is running. There’s no referral needed, and no expectation to share more than you want to. The sessions are informal, welcoming and social – not clinical.
Every area runs their Pain Café slightly differently. Sue’s groups begin with time to chat over coffee, followed by gentle movement that can be done seated or standing. Then there’s a group activity, often based on one of the Ten Footsteps, focused on practical tools for managing pain. The emphasis is on small changes, shared learning, and a shift in thinking.
“We don’t sit around comparing symptoms,” Sue says. “We focus on what helps. We look for ways to grow what we can do.”
The impact of the cafés is clear. Attendees say they feel less alone, more hopeful, and more equipped to manage their pain. Many go on to volunteer or support others. For Sue, it’s the most rewarding part.
“People arrive feeling helpless or unsure. Then you see them grow. You see them start to believe that change is possible.”
How to find your nearest Pain Cafe
If you’re living with persistent pain and looking for support, Pain Cafés offer a space to start. You don’t need a diagnosis or a referral, just an openness to try something new.
Now with the community support of NHS Somerset, Somerset Primary Care Networks, Somerset Activity and Sports Partnership (SASP) and Health Coaches there are more Pain Cafes available Somerset wide. And if you’re feeling nervous about coming along? Sue understands.
“So often, when you live with pain, you feel like a burden. Friends and family might not fully understand, they glaze over, and eventually, you stop talking about it. But when you’re with someone who gets it, everything shifts. It’s a relief. Being with others is always uplifting, especially when we’re learning to manage pain positively and sharing things that make us smile, which we do every time we meet.”
