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Patient perspective

BILLY PERRIGO REVIEWS THE PATIENT EXPERIENCE AT THE PAIN EXCHANGE, 2017

Imagine being in so much pain that you never left the house unless you had to. Now imagine that you couldn't make that pain go away. Chronic pain, defined medically as pain persisting longer than three months, is a debilitating problem. The charity Pain UK estimates that there are currently 14 million people suffering from chronic pain in the UK. Others put the number much higher. With chronic pain, there is only a limited amount the NHS can do, with many sufferers simply prescribed painkillers and left to their own devices. Economically, chronic pain makes people unable to work: the TUC reports that 4.9 million work-days are lost secondary to back pain alone annually. Socially, pain can often make people feel misunderstood and isolated from their communities.

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 that people were coming to see them - in pain - while waiting for their NHS appointments. As physiotherapists, they knew that often with chronic pain, early treatment has substantial effects. The earlier a patient is seen, the easier their rehabilitation. But patients were falling through the gaps in the system, and many were suffering in silence with chronic pain.

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 exercises, pain management, relaxation, and even art therapy and prayer for those who want it. Although both Sharon and Retha are Christian, the service is open to anyone deemed suitable after a one-on-one physiotherapy assessment. Three years on, the charity is going from strength to strength.

I was asked 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, Carina who suffers from pain in her left side as the result of a stroke, told me about her experience. “Initially the NHS is supposed to provide six weeks of follow-up," she told me, "but like everything they’re a bit overstretched and 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.

“Here I get exercises specific to my requirements as an individual, although it’s a group session. I can ask Sharon anything about my physical condition and she always helps me. Even this morning my shoulder was quite tight, and she was able to suggest certain exercises which I’ll be able to do in the group to ease the pain.”

But the Pain Exchange is about more than just the management of physical pain. 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 seeks to take 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 just rolling down her face. So I stood by her side the whole time and made sure she was doing the exercises okay, but she was crying the whole time. She was in pain, she struggled to climb up the stairs. By the end of the programme, she was coming 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.”

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 before being referred to the service. “It’s not just the physical, it’s also the emotional, the mental, stuff like that,” he gushes. “After all the exercises we sit down and have tea and a chat. And you know you’re not alone. 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? And very often you get isolated. But here, one, it relieves the pain and restores confidence and stuff like that, but also you’re not isolated. You get to talk to people. You even get to realize that there are people worse off than you and if there aren’t, then there are people nearby like you.”

Carina echoed the 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. And in terms of the attention we get, it’s a bargain. I think stuff like this needs to be more common.”

Retha said something similar to me when I asked 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."

Researched and Written by Billy Perrigo

The Pain Exchange is a registered charity in England & Wales. Charity no. 1166229