Imagine being in so much pain that you never left the house unless you had to. Now imagine you couldn’t make that pain go away. The charity Pain UK estimates that 14 million people in Britain are suffering from chronic pain, defined medically as pain persisting longer than three months. Others put that number much higher.

There is only a limited amount the NHS can do for people who suffer from chronic pain. Many are simply prescribed painkillers and left to deal with it themselves. For those without a strong support network, there is a patchwork quilt of community organisations and charities that can be turned to to help rebuild their lives.

Sharon Morgans and Retha Welding, two private-sector physiotherapists from west London, see the effects of pain first hand in their line of work. Time and time again, they noticed people were coming to see them, in pain, while waiting for their NHS appointments. As physiotherapists they knew that with chronic pain, early treatment has substantial effects. The earlier a patient is seen, the better chance they have of making a full recovery. But they could see patients were falling through the gaps in the system, suffering in silence.

Sharon and Retha decided to start the Pain Exchange, a chronic pain management charity, run out of a spacious attic room in an Acton church. Over twelve weeks, in small groups, participants are led through a course of individually tailored exercises, pain management sessions, meditation, and even art therapy and prayer for those who want it. Although both women are Christian, the service is open to anyone deemed suitable after a one-to-one physiotherapy assessment. Three years on, the charity is going from strength to strength.

I was asked by Sharon to spend some time with patients at the Pain Exchange to get their impressions of the charity. Sitting at a rickety table, on a balcony looking out over the unlit church hall, I met Carina. “I have pain on my left side because of a stroke,” she told me. “My nervous system has been affected, and my arm and leg aren’t really functioning. Initially the NHS is supposed to provide six weeks of follow-up, but like everything else they’re a bit overstretched – I would say it sort of dwindled. Really, I had to look for things to help myself, like this physio group, a stroke club outside my borough, stuff like that.

I worked for the Civil Service, in the Home Office, as a project manager. I asked for medical retirement, and all they did was try to sack me.

“I’d struggle to be as mobile without this service. There’s no follow up [for a stroke] in the general community. I think the hospital do as much as they can, but like everything there’s too much of a burden on the NHS. I think they could probably do more in terms of group activity.”

A few patients I spoke to told me of their difficulties dealing with employers after being struck down with chronic pain. “My employer wasn’t very supportive,” Carina said. “I worked for the Civil Service, in the Home Office, as a project manager. I asked for medical retirement, and all they did was try to sack me. It wasn’t written down somewhere, ‘what to do with someone who’s had a stroke’. Eventually I did get medical retirement, but through my own efforts.”

From my conversations with patients, I got the impression that not only did many feel medically under-provided for by the NHS, but also acutely socially stranded by their pain. That aspect of care is something that the NHS isn’t designed for, and doesn’t provide. Just like the epidemic of loneliness amongst the elderly in the UK, people with chronic pain can fall through the cracks.

The effects of pain can destroy a person’s confidence, sometimes leaving them confused, bitter, and if they are religious, can challenge their faith. Through emotional support, understanding and companionship, the Pain Exchange takes a “holistic” approach to pain management.

Retha told me about the monumental effect this approach can have on people: “We had one particular lady who, the first time she came for a class, her self esteem and her confidence were so low. She was really scared to talk to anybody, she wanted to just hide in a corner. When we started doing the class she started crying, the tears were rolling down her face. She was in pain, she struggled to climb up the stairs. By the end of the programme, she was climbing up and down the stairs much easier. She was talking to people in the class – she made a few friends. We played charades at the Christmas party – she was playing. She was laughing, she enjoyed the classes, taking part, doing exercises. She was also one of the people we could refer onto food banks because she had some trouble at home.”

There’s a lot of frustration, and understandably so. The NHS is an amazing structure but there are limitations, as with everything.

But it is the participants themselves who sing the Pain Exchange’s highest praise. I spoke to Alan, who was diagnosed with Multiple Sclerosis and hip arthritis. “It’s not just the physical, it’s also the emotional, the mental, stuff like that,” he told me. “After all the exercises we sit down and have tea and a chat… Very often if you have pain you don’t go out the house unless you have to. Because why go out the house if it causes you pain? But here, one, it relieves the pain and restores confidence, but also you’re not isolated. You get to talk to people. You even get to realise that there are people worse off than you and if there aren’t, then there are people nearby like you.”

Carina echoed Alan’s sentiment. “When you’ve got pain it’s an isolating thing because you can’t do anything normal. You tend to want to not even go out. I was working full time, fully independent and perfectly healthy [before the stroke]. So of course I had a complete cut-off. And it was very hard to deal with it. I haven’t got used to it, but I’ve had to deal with it.

“I’d say the Pain Exchange has helped me tremendously in the sense of understanding my pain, and as motivation to leave the house. So it’s a very positive thing. I think stuff like this needs to be more common.”

I asked Retha about the role the Pain Exchange occupies in the wider context of health in the UK: “There’s a lot of frustration, and understandably so. The NHS is an amazing structure but there are limitations, as with everything. Sadly, people put a lot of faith in it and maybe there are some unfair expectations of it, people start looking elsewhere for help, and it’s amazing that people can find some help here. We are hoping to be a service where people can come before they get to the stage where they’re helpless.”

I was left with the feeling that we need more groups like the Pain Exchange. Whether for chronic pain, for elderly loneliness, or for anything else, it struck me that a healthcare system – indeed society – must be holistic, caring for the minds as well as the bodies of its citizens. I couldn’t help but feel that for every person I spoke to who had been helped by the Pain Exchange, there might be another suffering in silence at home.

Disclaimer: Billy was invited to spend time with the Pain Exchange to write a patient-experience-oriented profile for the charity’s website, which this piece is based upon. The work was unpaid.

Photo: Jesse Moore, Flickr

Billy graduated from Warwick University in 2017 with a first class degree in History. He is now a reporter at TIME magazine.

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