Hey, I’m Glenn, a volunteer for Pain Concern and someone living with chronic pain.
On the 6th April I will be running the Brighton Marathon as part of my fundraising role for the charity! My mission is to raise awareness and funds to support others facing this challenging, and often misunderstood, condition. When I’m not advocating for this cause, you might find me enjoying time with friends or on the football field.
I’ve not long returned from Jordan, where I was teaching English, trying new food and joined a hiking club
Glenn Herriott
Q & A – Insight into my Journey
What challenges have you overcome?
I have overcome feelings of negativity and “can’t do it” attitude. Also overcoming obstacles like feeling cold or pain.
What inspires you to advocate for others?
I get to meet other people with chronic pain, such as in their ankles, knees, and I want to run and represent them too during my running.
Can you share a bit more about your training process, such as challenges you face?
I stretch throroughly before and after running. Challenge is dealing with the weather. I don’t like the cold! Thankfully I have some underarmour vests to wear.
How are you balancing preparation with chronic pain?
I am pacing myself through the training and setting low expectations for myself. It may be that I’m only able to do the Bath Half Marathon in March. And that is fine with me.
Stay tuned for more about Genn’s progress!
💙 Support Glenn’s Marathon Mission for Pain Concern
It’s always good to look back at previous editions of Pain Matters and it’s from issue 38 that I take great delight in sharing some words for wisdom from Dennis Turk and Frits Winter, “Pain needs competition”— social contact, creativity and fun all help us to put life in the foreground and pain in the rear.
Here, adapted for pain, is my list of creative activities for Christmas.
18 Creative and Crafty Activities
Decorate a Christmas tree – Keep it simple and enlist help for heavier tasks.
Make holiday cards or decorations – Use easy crafts like sticker kits or pre-made sets.
Colour holiday-themed pages – Therapeutic and low-effort.
Bake or decorate cookies – Choose pre-made dough or no-bake recipes to reduce physical strain.
Watch Christmas movies – Create a cozy spot with blankets and supportive cushions.
Andy is a writer. Negotiating life with pain and fatigue has meant discovering new ways to celebrate Christmas. In this series of anecdotes, Andy shares how difficult yet joyous that journey can be.
1. “The Christmas Light Dilemma”
Every year, the twinkle of Christmas lights feels like a promise of magic. But untangling those lights? It’s a marathon for my body. By the time they’re on the tree, I’m lying on the couch with a heating pad, half regretting even starting. But then I catch my kids’ wide-eyed faces, or see the glow against the window, and for a moment, the pain fades.
2. “The Uninvited Guest at the Table”
Christmas dinner feels like a contradiction. Surrounded by love and laughter, I’m also quietly navigating how long I can sit before the ache starts. Someone asks me to pass the gravy, and lifting it makes my arms scream. I smile and joke through it, because explaining again feels harder than just bearing it. Chronic pain may be invisible, but on holidays like these, it’s my constant companion.
3. “The Joy of Saying No”
It took years to learn that I don’t have to do it all at Christmas. One year, I was so flared up that I had to cancel hosting dinner. I thought I was ruining Christmas, but my family showed up with food and love. It reminded me that sometimes, Christmas magic is about letting people care for you.
4. “Silent Nights”
The world quiets down on Christmas Eve. For me, it’s the one night I don’t feel pressured to explain my pain or keep up with the world. Sitting in the glow of the tree, with hot tea in hand and soft blankets, I don’t feel left out of the celebration. In that stillness, I find peace that no holiday hustle can provide.
5. “The Double-Edged Sword of Family Time”
Christmas gatherings can be joyful, but also exhausting. There’s the awkward moment when a well-meaning relative asks, “Are you better yet?” or when someone offers unsolicited advice on curing my pain. I’ve learned to laugh it off and gently redirect, but it’s always a bittersweet reminder of the gap between their understanding and my reality.
6. “Decking the Halls, Fibro-Style”
Decorating for Christmas used to be one of my favourite traditions—pulling boxes from the attic, arranging ornaments, climbing ladders to hang lights. Now, I approach it differently. One year, I skipped the tree altogether and decorated a small potted plant instead. It felt like a loss at first, but when I looked at my little “tree” glowing warmly in the corner, I realised Christmas wasn’t about perfection—it was about adapting.
6. “Decking the Halls, Fibro-Style”
Decorating for Christmas used to be one of my favourite traditions—pulling boxes from the attic, arranging ornaments, climbing ladders to hang lights. Now, I approach it differently. One year, I skipped the tree altogether and decorated a small potted plant instead. It felt like a loss at first, but when I looked at my little “tree” glowing warmly
in the corner, I realised Christmas wasn’t about perfection—it was about adapting.
7. “The Energy Budget”
Christmas is a season of abundance, but for me, everything comes at a cost. I’ve learned to “budget” my energy like money. If I bake cookies, I might have to skip the carol service. If I attend the family dinner, I can’t help clean up. Chronic pain has made me redefine what it means to give. Sometimes, my presence is the best gift I can offer.
8. “The Flare that Stole Christmas”
One Christmas Eve, I woke up in a full-blown fibro flare. Every joint throbbed, my skin felt sunburned, and fatigue weighed me down. I cried in frustration, mourning the plans I’d have to cancel. But that evening, my best friend showed up with leftovers from her family dinner and sat with me on the couch. We watched cheesy holiday movies, and I realised Christmas doesn’t have to look a certain way to feel special.
9. “The Gift of Saying No”
Chronic pain has made me a master of boundaries, especially at Christmas. I used to overcommit—attending every event, shopping for the perfect gifts, cooking elaborate meals—only to crash by Christmas Day. Now, I say no more often, and yes to things that bring true joy. It’s not easy, but every “no” creates space for a holiday I can actually enjoy.
10. “A Different Kind of Warmth”
On cold December nights, my fibromyalgia makes my muscles stiffen and ache even more. Hot water bottles, heated blankets, and a good cup of tea have become my survival kit. Last year, my partner surprised me with a set of Christmas-themed heat packs. It was such a simple gesture, but it felt like they saw my pain—and loved me through it.
11. “The Invisible Pain of Celebration”
Chronic pain is an invisible illness, which means I often hear, “You don’t look sick!” at family gatherings. The truth is, I’m smiling through a fog of pain and fatigue. I’ve learned to excuse myself when I need to lie down and to accept that I don’t have to prove my struggles to anyone. My health is not up for debate, even at Christmas dinner.
The festive season can be a joyful time, but for those living with chronic pain, it often brings additional challenges. In these moments, showing yourself compassion is not just important—it’s essential. Andy Jeffrey, a Pain Concern volunteer, shares his handpicked selection of compassionate Christmas films to inspire warmth, reflection, and comfort this festive season.
Always good to look back at previous editions of Pain Matters and it’s from PM75 that I take great delight in sharing some words of wisdom before some compassionate Christmas films.
What Does Compassion Mean?
Compassion is described by the Dalai Lama as: ‘A sensitivity to the suffering of self and others, with a deep commitment to try to relieve it’ What is involved in being compassionate? First it requires strength, you need warmth and to be caring, genuine and approachable.
Some Christmas films radiate compassion and warmth, beautifully capturing the spirit of the season.
8 Compassionate Christmas Films to Watch This Season
1. “It’s a Wonderful Life”
“It’s a Wonderful Life” remains a timeless masterpiece, reminding us of the immeasurable impact one person can have on others. George Bailey’s journey, guided by an angel, highlights the power of love, community, and human connection.
In a similar vein, “Klaus” reimagines the origin of Santa Claus with a deeply moving story of unlikely friendships and selflessness. The film’s message about how kindness can spark transformation resonates profoundly, wrapped in stunning animation and humour.
3. “The Polar Express”
“The Polar Express” invites us into a magical world that champions belief, friendship, and rediscovering the wonder of childhood. It reminds us that the magic of the season often lies in the connections we nurture.
4. “A Christmas Carol”
Another heartfelt tale is “A Christmas Carol“, particularly in its many tender adaptations. Whether it’s through Scrooge’s redemption or the simple joys of giving, the story remains an enduring lesson in generosity and compassion.
5. “Last Christmas”
“Last Christmas” blends humour and emotion in a modern tale of love and second chances. With its themes of forgiveness, healing, and helping others, it stands out as a deeply compassionate holiday film.
6. “The Snowman”
Meanwhile, “The Snowman” offers a wordless yet profoundly touching narrative about fleeting connections and shared wonder, amplified by its ethereal score.
7. “The Family Stone”
For those seeking family dynamics with a mix of humour and tenderness, “The Family Stone” navigates the joys and challenges of coming together during the holidays, ultimately affirming the importance of acceptance and love.
8. “Elf”
And in “Elf,” Buddy’s boundless enthusiasm and kindness serve as a powerful reminder that joy and generosity can soften even the hardest of hearts.
Each of these films embodies the heart of the season, celebrating empathy, love, and the transformative power of kindness.
Over the next few weeks you’ll hear from Andy Jeffrey, one of our volunteers. Andy’s almost 40 and lives in Edinburgh. Through his writing, he hopes to help others by sharing how he has rebuilt his life following a diagnosis of a chronic pain condition. By way of introduction, we asked him a few questions
How would you introduce yourself?
Navigating life with my fibromyalgia, Borderline Personality Disorder and suspected autism.
That’s a lot. What keeps you inspired?
Coaching, writing and football analysis. Also, I am a proud dad to Ailidh who is 4 and keeps me going day in, day out.
You attended a pain management programme at Astley Ainslie Hospital, Edinburgh.Tell us about that.
I learned to build a new life around my condition. One that doesn’t mean giving up on the things I love but rather finding new ways to engage with them. I’ve learned to pace myself, to listen to my body and to prioritize self-care in ways I never had to before.
Why is writing important to you?
It’s allowed me to connect with others. Learning that I’m not alone, that others understand the unique struggles of this condition, has been incredibly validating. We share tips, offer encouragement, and remind each other that while chronic pain is part of our lives, it doesn’t define who we are.
What else would you like to share?
My journey through chronic pain, mental health and self-discovery. Let’s connect, learn and grow together.
Welcome to Pain Concern.
See more of Andy’s writing about his other great passion:
Beth Evans in conversation with Jason Wilsher-Mills
Jason Wilsher-Mills is an artist from Wakefield. His exhibition ‘Jason and the adventure of 254’ is being shown at the Wellcome Collection until 12 January 2025. At the age of eleven, Jason was diagnosed with an autoimmune condition that paralysed him from the neck down. The doctors told Jason’s parents that he would not live to the age of sixteen. He was diagnosed at 2:54pm on 1 August 1980, as he watched the 1500m men’s race at the Moscow Olympics in which British athlete Seb Coe won the race bearing the number 254.
Now, over forty years later, Jason reflects on the year he lived in Pinderfields Hospital. Encapsulating what it was like becoming disabled as a child, he has created a space filled with nostalgia, magical realism and creativity.
I was lucky enough to sit down with Jason and ask him all about his exhibition, his inspirations and how art can be used as a creative outlet for pain and disability.
Early Life and Artistic Vision
Could you introduce yourself and tell me a bit about your exhibition and the inspiration behind it?
My name is Jason Wilsher-Mills. I’m an artist who creates work about disability and childhood trauma. I do it in a way that’s kind of humorous because in my head I pretend that I’m working for The Beano in the 1970s and I’ve gone down a Marxist activist route, producing content for them about disability.
So, all the work that I create is influenced by that working-class aesthetic from the 1970s, growing up in a council estate and watching lots of telly. It’s also about being bright and interested in ideas and subsequently becoming disabled at the age of eleven. My work is psychically landlocked in childhood. It’s about those issues of how one deals with and navigates illness. And in my case, it was apparently terminal. I wasn’t supposed to be around. And here I am, an old fart looking like Uncle Albert from Only Fools and Horses.
Creating a Child’s Wonderland
Stepping into the exhibition space really feels like you’re stepping into a child’s imagination. The bright colours and the magical realism make it such a playful atmosphere in comparison to a stereotypical hospital ward. Was this at the centre for you when you began your work on this exhibition?
First of all, when the Wellcome Collection approached and said, ‘would you like an exhibition with us’, it was the most exciting thing I’d ever heard. When they showed me the space, it was long and thin and I thought, ‘this is a hospital ward’. There’s a drawing in the sketchbooks that I did literally on the day I saw that space. I drew what the exhibition would look like. I knew what it was going to be: this huge diorama that was about both the exterior and interior. The exteriors were all the medical stuff, and the interiors were all the memories and things that I thought about in hospital.
Dioramas based on the diorama machines Jason used as a child. ‘Mum the Mermaid’ depicts Jason’s memory of his mum swimming in the sea at night, lit up by jellyfish. ‘The Inseminoids’ references 1981 sci-fi horror film Inseminoid, which Jason heard about while in hospital. Here the film is combined with memories of Jason’s treatment. Photo: Benjamin Gilbert.
Dioramas based on the diorama machines Jason used as a child. ‘Mum the Mermaid’ depicts Jason’s memory of his mum swimming in the sea at night, lit up by jellyfish. ‘The Inseminoids’ references 1981 sci-fi horror film Inseminoid, which Jason heard about while in hospital. Here the film is combined with memories of Jason’s treatment. Photo: Benjamin Gilbert.
Dioramas based on the diorama machines Jason used as a child. ‘Mum the Mermaid’ depicts Jason’s memory of his mum swimming in the sea at night, lit up by jellyfish. ‘The Inseminoids’ references 1981 sci-fi horror film Inseminoid, which Jason heard about while in hospital. Here the film is combined with memories of Jason’s treatment. Photo: Benjamin Gilbert.
I wanted it to be like the seaside as well. A lot of my work is about these memories of going to the seaside because it was the only time that we saw colour. It was our art galleries. We saw rides with paintings on; it’s the first time I ever saw a painting. I thought, ‘oh blimey! Someone did that!’ There must be people like me that do this job. The exhibition is full of stuff that I remember from that time. I wanted it to be like the kid’s annuals that we used to get at Christmas.
I wanted facts on the wall, so there’s facts about my chickenpox, which developed into this thing. Then underneath that, I’d put that it was Tom Baker’s last episode or that I heard ‘Strawberry Fields’ for the first time and all these little silly things that create a kind of atmosphere.
The Significance of 254
The title of your exhibition is ‘Jason and the adventure of 254’. Can you expand on the reasons for that title?
I’m named after Jason, from Jason and the Argonauts, which is pretty cool. Regarding the 245, I was diagnosed 1 August 1980, between 2:45 and 3:15pm. I know that because it was visiting time at the hospital and I was watching the men’s 1500m race final at the Moscow Olympics. The race started; I think it was about 2:50pm. So I was watching it as I was being diagnosed. The shirt that Seb Coe (British athlete and subsequent winner of the race) was wearing in that very race was the number 254 and I was diagnosed at 2:54pm.
What are the chances of me being an eleven-year-old kid lying in bed watching this race, getting diagnosed and hearing that I’m not going to make it to the age of sixteen, then forty years forward in time making art about that?
Interactive Art and Accessibility
The exhibition greatly encourages visitors to touch and engage with the exhibition. This is very different to what is stereotypically experienced in art galleries and exhibitions and made for a welcome change. How important was it to you whilst constructing the pieces that your audience should physically touch and engage with your art?
It was important because I wanted it to be like a fun fair. I want people to have an experience. I want it to be kind of high art. But I knew children would like it and really get it, which is being proven right. I got a lovely e-mail from a parent who said, ‘my kid saw your exhibition two weeks ago and we’re here again because they wanted to come back’. That’s been really powerful. The stuff that I talk about is difficult to talk about; if you’re getting people to engage with it in a sensuous way, in terms of touching it, they start to look at the detail.
I was in bed for more or less a year, and I couldn’t feel anything in my body other than pain. It was very difficult having this body that was really working against me. It’s an exhibition that’s about trauma, childhood trauma. And I’ve managed to make it entertaining.
When people are touching it, they’re engaging with me as an eleven-year-old kid. I go to galleries where you see Veneer’s and Rembrandt’s and there’s a distance. Like I said, my main influence as a kid was that I didn’t see art. Instead, I saw fairground rides with paintings on, so I want to make my work about fun. That is the vehicle that I have my own narrative with.
Scale and Symbolism
You really play with size. The imposing presence of the figure in the bed dominates the space. The calliper boots tower over you. The caricatures of infection are huge, their shadows blocking out the light at parts. The soldiers too are larger than life. The size of Seb Coe with a TV for a head is much smaller in comparison. What was the purpose behind this?
I was trying to depict the sensory part of a time when I couldn’t feel my body anymore. Yet every now and again I would get really intense signals in my feet, so I increased the scale of the feet. I’m OK messing about with scale and it fits in with a child’s view of things as well. To me, that ward was vast and endless and scary and so I wanted it to be like the seaside as well.
‘Calliper Boots’. Jason had to wear these after his diagnosis. At the time he felt they were painful and burdensome, but here they are positively reclaimed. Photo: Benjamin Gilbert.
‘Calliper Boots’. Jason had to wear these after his diagnosis. At the time he felt they were painful and burdensome, but here they are positively reclaimed. Photo: Benjamin Gilbert.
‘Calliper Boots’. Jason had to wear these after his diagnosis. At the time he felt they were painful and burdensome, but here they are positively reclaimed. Photo: Benjamin Gilbert.
The boots were influenced by Tommy from The Who. I had to wear those calliper boots. A number of parents have come up to me and said that their kid had to wear them, and they had to paint the boots to make the kid them wear them.
I mean, every part of me had something attached to it. I had a surgical collar that started at the back of my skull and went all the way down my back. It used to give me really bad migraines. I had a spinal corset, a big thing that strapped me into my chair, so I didn’t fall over.
I don’t think I’m ever going to be short of ideas as an artist because of my experiences. I was wanting to take these horrible sorts of surgical stuff and make them kind of relatable and accessible.
Yorkshire Roots and Working-Class Identity
I really enjoyed the way you weaved your working-class roots into your exhibition. I particularly loved the parts of it that read like a love letter to 1970s Yorkshire, especially your colourful depictions of your time at Withernsea on family holidays. How important is this idea of ‘home’ to you in your work? Do you see Yorkshire as its own motif in this exhibition?
Yorkshire is a bizarre place. They like being forthright: when I got ill, a family member said, ‘well, I’m not going to bloody treat you any differently’.
I’m one of eight with no money from a little council house and we used to go on holiday to Withernsea, which is a little dot on the east coast of England. It was always bloody freezing and we stayed in this little, we called it a chalet, but it wasn’t, it was a hut. And I thought it was magic.
As a family, we never articulated anything. We never told each other we loved each other and we never hugged. But you know what? I never ever as a kid thought that I’m not loved. I was so loved. It’s not everybody’s experience but I was really loved, and I was very lucky. My mum, bless her, had her own struggles throughout life. When I told her that I wanted to be an artist, she said, ‘well, if you want to become an artist, we’ll save up and send you to Paris because that’s where they all are’. That was an example of the kind of support that I had.
The day that I got diagnosed, they were very obviously affected. But my mum said, ‘we’re not going to treat you any differently. We’re going to give you all the best opportunities’. I attended a hospital special school. You’d get in and go ‘where’s Phil?’ and they’d say, ‘he died last week’. That was normal. You had to kind of deal with that quickly and get around it. I’ll tell you, the reunions are nothing to talk about. I’m the only one left. But yeah, it was a very special, fantastic childhood.
The hospital bit was tough. There are some references in the work that are about quite dark things: I was in hospital for a year and in that period horrible things happened. I’m trying to deal with that as well. The Wellcome Collection have been amazing. They paid for counselling because they said, ‘this seems like it could be quite triggering’. They were proved correct. My sister said, ‘oh, can you remember that time we came to visit you and your head was face-down in your food?’. I couldn’t lift it up, so I’d fallen into my own food. I said ‘no, but thank you for telling me’.
‘Figure in the Bed’. A colourful, scaled-up representation of eleven-year-old Jason in his hospital bed at 2:54pm on 1 August 1980, as he was diagnosed with an autoimmune condition that paralysed him from the neck down. Photo: Benjamin Gilbert.
‘Figure in the Bed’. A colourful, scaled-up representation of eleven-year-old Jason in his hospital bed at 2:54pm on 1 August 1980, as he was diagnosed with an autoimmune condition that paralysed him from the neck down. Photo: Benjamin Gilbert.
‘Figure in the Bed’. A colourful, scaled-up representation of eleven-year-old Jason in his hospital bed at 2:54pm on 1 August 1980, as he was diagnosed with an autoimmune condition that paralysed him from the neck down. Photo: Benjamin Gilbert.
I think the exhibition has been good because it’s helped people deal with their own experiences. You’re never alone. If you make a piece of artwork that’s a film or a book or whatever, you’re not interrupting: it’s there and people can bring their own experiences to it and bathe in that empathy. And it seems to be working.
The Power of Maternal Love
Could you tell me a little more about how important your relationship with your mother was in those early years of diagnosis?
I secretly think that my Yorkshire working-class family was actually Italian because it was all about the Mama. Picasso talks about the Madonna, and I always saw my mum as this kind of beautiful, Madonna type. My mum was really amazing. So was my dad. My dad was really stressed, but he had eight kids and no money, so who wouldn’t be.
We were brought up really well and we had great experiences. When mum was in her last days, I said to her, ‘thank you’. There were loads of pressure put on them for me to go into a home, which would have killed me. I said, ‘you saved my life, mum’. She said, ‘well, what do you expect me to do? You’re my lad’.
I’ve always thought that those are such simple words, but it’s words that make governments fall and totally eclipse power. She was Irene.
Irene and Peter, they were just ordinary people. They both were unbelievably eccentric. My dad would go out of the room and change his hairstyle and come back in and see if anybody had noticed. We laughed all the time.
And when I was in hospital, I was eleven and my mum was fifty-two. So, she was lifting me in and out of bed in the morning and buying me paints and she was just an incredible woman. I think with working-class families there’s a myth that it’s patriarchal. It’s not, it’s about the mum, it’s about Mama. She was a character.
Capturing Wonder Through Nostalgia
Nostalgia is peppered into the exhibition, whether that’s your own nostalgia of your youth and time at the hospital or the nostalgia of Britain.Can you tell us a little more on why you emphasise this sense of nostalgia in your pieces?
When I was first asked about the show, the Wellcome Collection said, ‘what do you want people to think of it?’. I said, ‘I want kids, when they walk in, to go “wow”’. I want adults to remember what it felt like to be a child and to enjoy being playful again.
The dioramas are based on these diorama machines that you used to put twopence in. These 1930s dioramas were rubbish, but I thought they were beautiful. I tracked down the ones that I saw as a kid. They’re in the Hull Streetlife Museum. I found them and I put some money in and I watched them and I was transported back. So, I wanted that sense of wonder, and I wanted people to go inside my memories.
One of my memories in one of the dioramas was of my mum. She didn’t like swimming in front of people, so we used to go down to the beach at about ten at night. This particular year there was loads of jellyfish. The sea was lit up and there was my little mum, because she was only about five-foot, swimming. When you’re a kid, you’re bright and you feel things intuitively, but you can’t articulate it. I was experiencing this moment, almost thinking to myself, ‘oh, I’ll put this away in the filing cabinet because I think something special is happening here’. You know, we’ve all got stories to tell.
Personal Healing Through Art
You said that the exhibition very much encapsulates that merging of past and present. Now we are in the ‘future’ of this exhibition. How has this exhibition helped you with reflecting on your time in hospital and the years that followed?
It has really helped. I’ll be honest, it’s unlocked a lot of memories that I didn’t know I had. It’s helped my family to deal with a lot of stuff. I think it’s helped people that have been to the exhibition to understand illness, childhood illness, and kids get it because it’s funny. There’s a lot of colour there, there’s a lot of humour.
But you can still be sophisticated and tell stories. I always try and equate it to the film Jaws. The only person who could make Jaws so amazing is Steven Spielberg. If it had been directed by a lesser director, it wouldn’t be the same film. It’d just be like a gorefest. To tell a story, you must have the tools and the ability to be authentic and be real, because people do get it.
An actress contacted me who knew the director of Inseminoid (a film referenced in one of the dioramas). She said that he was such a nice man and that he’d have approved. She found it very touching.
Art as a Transformative Force
How would you say that art has changed your life?
From being a working-class kid with no discernible options, it gave me options. It introduced me to education and books.
It’s taken me a long time because even when I graduated from a fine art degree, I still wasn’t convinced that I was good enough. I became a teacher and then I went into management. It wasn’t until my 30s that I thought I could do this. I call it being fully baked. You’ve been in the oven and now you’re ready to go. Doing a fine art degree was like cultural national service. It introduced me to ideas about politics. I remember going to see The Last Temptation of Christ and all these protesters outside were saying ‘God loves you’ because it was controversial, but we were encouraged, because of the way the art education was then, to look at stuff that was difficult. Instead of going through that door, I went through that door and it gave me that choice; I can choose to do this because I’ve got this education now.
Jason with his bronze sculpture, Amazonian Caiman God (2023). Summarised by Jason as being about hope, love and disability, the piece is part of Wakefield’s Sculpture Trail. Photo: Wakefield Council / Scott Merrylees.
Jason with his bronze sculpture, Amazonian Caiman God (2023). Summarised by Jason as being about hope, love and disability, the piece is part of Wakefield’s Sculpture Trail. Photo: Wakefield Council / Scott Merrylees.
Jason with his bronze sculpture, Amazonian Caiman God (2023). Summarised by Jason as being about hope, love and disability, the piece is part of Wakefield’s Sculpture Trail. Photo: Wakefield Council / Scott Merrylees.
I’m moving my hands now. It is amazing to be able to do that. Of course, because of the damage done to me whilst being paralysed, I’m now in constant pain. In the middle of this interview, I took some pain medication. It’s making talking a little bit more difficult, but it’s to keep the pain levels down. But there’s so many stories to tell: I see almost a trilogy of future exhibitions ahead because I went from basically being completely paralysed to going to university. I’m also coming to terms with the fact that, oh, I’m not dead.
More details can be found on the Wellcome Collection’s website, including images of the exhibition’s highlights and a five-minute video tour narrated by Jason.
Dr. Lars Williams is consultant anaesthetist and pain specialist working for NHS Greater Glasgow & Clyde Pain Service, as well as the Scottish National Pain Management Service. In this article, originally published in Pain Matters87, Dr. Williams explores the complexities of using opioids for chronic pain management, reflecting on the evolving understanding of their benefits and risks.
Finding a way through the opioid conundrum
When I started working in pain medicine 20 years ago, opioids (morphine-family drugs) were still being promoted in the UK as an effective solution to chronic pain, which everyone agreed was shamefully undertreated. Since then, clinical and societal experience has been that long-term opioids do more harm than good for most people who take them. The limited research supporting opioids has been picked apart and found to be wanting, leading to strong recommendations in UK guidelines that opioids should not be used at all for chronic pain, simply because they don’t work. As a person struggling with chronic pain, you may well feel frustrated by this seemingly abrupt shift from one extreme position to the other, more so if the narrative of opioids = bad doesn’t reflect your own experience.
Research findings vs individual experience
Research studies tell us how a population, on average, will respond to any intervention. These are studies of probability: they give us a sense of how likely any particular response is, but they can’t predict whether you as an individual will have that response. Some responses, such as changes in blood pressure, are easy for healthcare practitioners to measure objectively. But there is no objective measure of pain. Pain is a subjective experience and this is a problem when it comes to research, because studies of probability are less reliable when they are based on outcomes that can’t be objectively measured.
Although research can guide us as to whether or not a drug is likely to help, it is your experience of the drug that really matters. And your subjective experience is all anyone has to go on when it comes to pain. Your GP can easily see whether or not your blood pressure medication is working, but only you can say how effective your pain medication is. A key part of self-management of chronic pain is taking a step back and getting a clear-sighted view of what your pain medication is actually doing to you. How much is it helping? Does it reduce your pain, and by how much? Does it improve your sleep, or allow you to walk further? Conversely, how much harm is it doing to you? Do you get side effects? Do your family say that you seem withdrawn? Does it stop you doing things you want to do (for example driving, or going to the pub)? The first step towards a sustainable approach to opioids is getting this clear view of what these drugs are doing for (or to) you. If they are causing you more harm than good then you should stop taking them – slowly, of course, to avoid withdrawal symptoms. Unlike medication for high blood pressure, you don’t have to take pain medication. Your underlying condition won’t get worse if you stop (it might even get better). This realisation can be empowering.
Using opioids sustainably
Population studies suggest that a small proportion of people (maybe 10%) will continue to benefit from opioids in the long term. But for most people, any benefit wears off, or side effects begin to outweigh the benefits, after a few months. By conducting an honest appraisal of your medication you should have a clear idea which group you belong to. If your opioids are no longer helping, or they are causing you more harm than good, you have two options. You could slowly reduce them with the aim of coming off them completely, or you could continue to take them, just not every day.
Rethinking Opioid Use: From Daily Dosing to As-Needed Treatment
Received wisdom used to be that constant pain is best treated by round-the-clock opioids. But this goes against what we now understand about tolerance to opioids. A common sense approach would be to use opioids only for short periods, perhaps to treat a difficult flare up of pain, or to support an activity which you know will be painful. If you are not taking opioids every day then your morphine receptors are more likely to remain sensitive to the effects of opioids, and you are less likely to develop the side effects we talked about in the last column. There is a small amount of research evidence to support this common sense approach – a 2011 Canadian study showed that people taking opioids only when required took much lower doses and had fewer associated problems compared to people taking opioids regularly for the same problem.
Making Changes Safely
So, we can be guided by population research and by clinical experience, but ultimately this is about finding an approach that works best for you. Take some time for a frank and honest reflection on what the medication you take does for you. Ask your family or friends what they have noticed – the insight of those around us can be invaluable. If you want to change, reduce or stop, then see your GP or the prescribing pharmacist attached to your GP practice, so that they can support you to make any change in a safe and controlled way. If you want to find out more, the NHS GG&C pain service website has links to some resources you may find helpful.
On behalf of Pain Concern, I attended the Royal Society of Medicine’s Pain Management Outside the Box conference on Wednesday 16th October. It was held in a large room with books from the floor to the ceiling. These shelves, bursting with years of research and information, reflected our meeting: a conference brimming with new ideas and fascinating research from an eclectic range of doctors and academics. The programme ranged from hypnosis for pain management (Dr Rebecca Berman) to the placebo effect (Professor Flis Bishop), to name only a few.
Exploring Alternative Perspectives on Pain Management
All the talks were fascinating. They encouraged further dialogues about alternative methods for and perspectives on pain management. For example, one discussion re-evaluated how people who live with chronic pain perceive time (Professor Ruth Ogden). There was also a perfect pre-lunch talk on the relationship between microbiomes and pain management and the recent use of faecal transplantation (Dr Gillian Chumbley (OBE)).
Bacteria Lactobacillus in the human intestine
The highlights for me were Dr Deepak Ravindran’s opening talk on the importance of trauma-informed care and Professor Rui Loureiro’s discussion on virtual reality for rehabilitation.
The Role of Trauma in Pain Management
Dr Ravindran presented the integral role that trauma can sometimes play in a patient’s pain. He discussed how conversations about childhood adversities between medical professionals and patients are as important as conversations about a patient’s drinking or smoking history when determining a care plan. Dr Ravindran’s convictions on trauma-informed care were very interesting and it was extremely refreshing to hear from someone who clearly puts his patients at the heart of everything he does.
Virtual Reality: A New Frontier for Pain Relief
Professor Loureiro’s talk on virtual reality and the possibilities of using technology for pain management left me reeling. The professor talked us through creating an interactive environment and combining virtual reality with robotics for motor control. It was especially incredible to see how this combination could be utilised to help those with phantom limb pain. Pain can be alleviated by allowing the user to trick their mind into thinking their limb is there through the virtual reality environment.
Virtual Reality headset
A Stimulating Day of Cutting-Edge Discussions
Overall, the conference was extremely stimulating. It was exciting to be surrounded by so many pioneering minds and discussions around pain.
The North British Pain Association (NBPA) held its Autumn Scientific Meeting on 8th November 2024 in Edinburgh, focusing on the theme of Pain Management Across Identities.
Thank You!
We thank the NBPA committee for organising a day of engaging talks and discussions. It was inspiring to hear about efforts across the NHS to improve access to pain management services.
Professor Sonia Cottam
A fantastic session was delivered by Professor Sonia Cottam from Pain Association Scotland. She shared her work on understanding chronic pain in prison populations. Her presentation highlighted the significant benefits for both inmates and staff, emphasising the value of tailored approaches to pain management in these unique settings.
Prof. Sonia Cottam of the Pain Association speaking at the NBPA Autumn Scientific Meeting 2024
People’s Choice Award
We are also thrilled to celebrate the success of our ownLars Williams, Pain Matters columnist, and his colleague Heather Harrison from NHS Greater Glasgow & Clyde. Their project, Pain Clinic Letters Sent Directly to Patients: A GP Perspective, was honoured with the People’s Choice Award. This recognition celebrates their innovative work to enhance patient communication and care in pain management.
Lyn Watson (Chair of NBPA) and Dr Lars Williams (NHS GG&C) speaking at the NBPA Autumn Scientific Meeting 2024
Poster detailing the study “Pain Clinic letters sent directly to patients: a GP’s perspective” and it’s findings carried out by Dr Lars Williams and Heather Harrison
Poster detailing the study “Pain Clinic letters sent directly to patients: a GP’s perspective” and it’s findings carried out by Dr Lars Williams and Heather Harrison
Poster detailing the study “Pain Clinic letters sent directly to patients: a GP’s perspective” and it’s findings carried out by Dr Lars Williams and Heather Harrison
Congratulations to all the contributors, and thank you to everyone who made the NBPA Autumn Scientific Meeting such a success.
We’re excited to share the launch of the Chronic Pain Knowledge Hub, a new resource from NHS Education for Scotland. This hub has been developed in partnership with the National Pain Education Group, of which Pain Concern is a member.
What is the Hub?
The Hub was created as part of the Scottish Government’s Pain Management service delivery. It offers a wealth of resources, including the Interactive Chronic Pain Toolkit and a series of training modules. This ‘one-stop shop’ equips all NHS and Partnership staff with practical tools to develop their knowledge and skills in chronic pain management.
Why do we need the Hub?
Chronic pain affects 38% of adults in Scotland. Also, it often coexists with other long-term health conditions, impacting many aspects of daily life and overall health. Consequently, most frontline NHS and partnership staff will encounter individuals affected by chronic pain in their day-to-day work. Unquestionably, the Hub, including the new modules, provides a valuable resource for colleagues across health and social care and the third sector.
Visit the Hub
Visit the Hub to sign up and explore these valuable modules and enhance your understanding of chronic pain.
Lou (Helpline Team member) and Dr Nicola Rhind (National Lead Clinician for Chronic Pain). Lou, with lived experience, provided key patient insights to shape these modules.
Other Resources
The Pain Toolkit is for people who live with persistent pain and healthcare teams who support them.
After the amazing response to our last free, online mindfulness taster sessions, we are thrilled to be bringing them back!
The design of these sessions is to give you a peek into the potential benefits of mindfulness for chronic pain, sample a few practices, and answer all your questions. They will run in advance of our full 8-week course starting in January 2025.
Why Mindfulness?
Mindfulness is able to help people manage chronic pain by:
In collaboration with The Everyone Project, we’re delighted to have Cath Ashby, an experienced mindfulness expert, lead these sessions. Cath has been teaching mindfulness since 2020, after personally benefiting from mindfulness during an NHS Pain Clinic’s 8-week course. As someone living with chronic pain herself, Cath understands the transformative power of mindfulness, and it has since become a central part of her life.
‘I have learned to just enjoy the moment, not dwell on the past or worry too much about the future.’
~ Previous Course Participant
‘I think it has had a very positive impact on my day-to-day life. As well as more formal practice, I find myself just taking a moment when I feel overwhelmed which makes a mental and physical difference.’
~ Previous Course Participant
‘From the very first session I learned how to settle my mind as well as my body which is beneficial in all areas of my life…’
Trailer – Airing Pain 149: Advances in understanding and managing chronic pain, from neuroimmune mechanisms to new diagnostic and treatment approaches
First broadcast 16th May 2025
Shafiq Sikander, a professor of sensory neurophysiology at the William Harvey Research Institute, Queen Mary University, London.
Gareth Hathway, professor of neuroscience at the University of Nottingham’s’ school of life sciences.
Kathleen Sluka, a professor in physical therapy and rehabilitation science at the University of Iowa in the United States.
Transcript made with thanks to the British Pain Society Annual Scientific Conference in 2024.
Transcript begins
Paul Evans: How does acute short-term pain turn into chronic, persistent pain?
Kathleen Sluka: We know that in people with psychological trauma that young ages are more likely to have chronic pain later in life. But what we think is happening – and we’ve done a little bit of this – psychological trauma or some kind of a stressful event, it actually changes your immune system.
Evans: Why do early life experiences affect later life pain?
Shafiq Skikander: A lot of patients with fibromyalgia may have had early life stressors. Or they may often, when they come to clinic presenting with fibromyalgia, they usually have history of depression.
Evans: And do existing tools for measuring pain fall short?
Gareth Hathway: Slowly but surely, our understanding of the basic mechanisms is light years ahead of where it was. And clinically, an appreciation that babies do feel pain, young people do feel pain. It has a long-term consequence. So we can’t just treat them as small adults. We need a specialist approach to managing pain at every part of the life course. We need to think about how we measure that pain and how we treat that pain.
Evans: Find out more in Pain Concern’s April edition of Airing Pain.
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