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Pain Concern is recruiting for two new roles, Media Assistant and Social Media Coordinator – here is your opportunity to join a small team, dedicated to improving the lives of those who have lived experience of chronic pain.

About Pain Concern 

Pain Concern is a charity providing information and support to people with pain and those who care for them, whether family, friends or healthcare professionals. On our website you’ll find out more about what we do, including our Airing Pain radio programme, Pain Matters magazine, information helpline, community pain education sessions and our research and campaigning work.   

Media Assistant

You will be part of the Airing Pain production team in which you will help in the initial research foreach programme, and you will help facilitate its success after broadcast.

Read full role description and find out how to apply

Social Media Coordinator

We are seeking highly motivated individuals to join our social media team to help raise awareness of chronic pain and the work of Pain Concern to reach more people in need of the support we offer.

Read full description and find out how to apply

First broadcast: 10 April 2024

This edition is presented and produced by Paul Evans, and includes interviews with:

Professor Tony Dickenson, Professor of Neuropharmacology at University College London

Dr. Beth Darnall, PhD, Professor of Anaesthesiology, Perioperative and Pain Medicine at Stanford University School of Medicine. Director, Stanford Pain Relief Innovations Lab.

Professor Irene Tracey, Vice Chancellor of the University of Oxford and a Professor of Anaesthetic Neuroscience in the Nuffield Department of Clinical Neurosciences.

This edition of Airing Pain was possible thanks to support from the British Pain Society.

Transcript begins

Paul Evans: This is Airing Pain, a programme brought to you by Pain Concern the UK charity providing information and support for those of us living with pain. Our family and supporters and the health professionals who care for us. And this edition of Airing Pain, was made possible thanks to the continuing support of the British Pain Society. I’m Paul Evans.

Dr. Beth Darnall: We want to start to disentangle what pain has taught us in order to survive, because those hardwired responses overtime actually amplify pain. This is like the cruel irony of having a human body. Our body stores responses that end up working against us.

Evans: We are, of course individuals. Each of us is unique, all be it with common factors in our makeup. So why should medicine work on the one-size-fits-all principle? In this edition of Airing Pain, I’ll be exploring why personalised medicine, that is medicine tailored to the individual is the way forward. So, let’s go back to basics, the science behind how the body reacts to a painful stimulus. Professor Tony Dickenson is a professor of neuropharmacology at University College London. His research has hinged around trying to understand pain in patients and to take that back to the basic science of pain mechanisms and how treatments work. So, if I hit my hand on the table [bang sound] the pain is in my fist. What happens to it then?

Professor Tony Dickenson: So it kicks off yes, in your fist that’s stimulus, and in this case it’s a mechanical one, but it could easily be too much heat, too much cold. We have a whole set of specialised pain endings that tell us about the nature of the stimulus and they transmit electrical impulses up nerves into the spinal cord and the spinal cord doesn’t sort of treat these passively at all. It often enhances them, if that pain input from your fist continues the pain message that’s sent onto your brain, gets bigger and bigger, something called sensitization. Winding up of the pain and the messages from the spinal cord enter the brain. And they go to the sensory parts of the brain. So, we know that it’s your fist, and you might say, well, that’s seven out of ten, ten is the worst ever. This is pretty bad, but equally you find it unpleasant. You don’t like it and pain produces an emotional response as well. Our brain puts those together. The sensory and the effective emotional component of pain and builds up a pain experience for each individual and it’s different. The messages in the brain also interact with what we call descending pathways, so pathways that come back from the brain to the spinal cord and the brain is able to switch that off. So, if you’re in the middle of a podcast and you’ve injured your fist, you might say I need to kind of put this this pain aside if I can, but equally in other occasions your brain can make that pain worse. So, it’s a network of pathways that we’re very interested in and trying to place those mechanisms into the context of pain in particular patients.

The overall aim is really, I mean people have kind of called it personalised medicine, which is a kind of strange term, and it mostly relates to, you know, genetics in a sense. You know, you have your personal genes, and does that relate to pain, and that’s pretty tough. What we’re trying to think about is more what’s been called precision medicine. So, can you target that pharmacological therapy, but it would be true for other therapeutic approaches to particular individuals, because for neuropathic pain, pain from nerve injury so many studies have been done looking at particular agents and you can pull them together and so you can build up a huge group of patients who’ve been treated, compare the treatment to placebo and it’s incredibly disappointing that maybe one in four or one in five patients get a benefit from a particular agent, and so we’re kind of interested in what’s, what’s going on? Why is this this? These agents work, but they don’t work in everybody. So can we identify who they work in and that then becomes what we call precision medicine then, you know you don’t just give somebody something for two months, hope it works and then try something else. You might be able to pinpoint a therapy and match it to a patient.

Evans: That seems very advanced to me because there are things called the pain management pathway. So you start off on one thing, doesn’t work as you say. Then you go on to the next thing, then the next thing, and you end up at the very top of that with something that’s still not working. So how do you work out…

Dickenson: Right, OK.

Evans: That’s the big question [laughs].

Dickenson: Yes, so this is coming from both the kind of basic science and the patient, and much of this work has been done again in, in neuropathic pain, things like osteoarthritis and inflammatory pains are kind of lagging behind in, in terms of our knowledge. But the principles are exactly the same. So what a group of German colleagues did was to do sensory testing in in their patients with neuropathic pain. So, there’s a like a, a kind of kit you can get, which is like, you know, what’s your response to cold, to warm, to mechanical. All these stimuli and you build up a profile. They just took patients with neuropathic pain, did this testing and it was so thorough and so comprehensive. Thousands, probably of patients in the end, and what they found is that there were three subgroups of patients. Their sensory responses were different from each other, and it didn’t matter what the cause of their pain was, the so-called aetiology was absolutely immaterial. But there were three subgroups.

So, the premise was then if you take these patients and they’re in subgroups, presumably those different sensory profile sensory responses, mean they’ve got different mechanisms, and if they’ve got different mechanisms, they might well need different treatments. Having established that, what is now going on is looking at drugs for neuropathic pain and saying, do they work in particular subgroups? And if that turns out to be the case, and there’s a couple of good examples where it is the case, then you can be much more precise with your treatment.

Evans: So there’s no point in giving somebody such and such a drug because they don’t have the make up for that.

Dickenson: That could well be the case. Yes, that’s why not everybody responds exactly. They haven’t got the mechanism that that drug targets and so it doesn’t work. Whereas if you can find patients where that mechanism is active, then you can. So, there’s a very good example of a very old drug, something called oxcarbazepine. It was a study done in Northern Europe and in Scandinavia and they just took patients and gave them the drug, gave them placebo and it didn’t work. It was no better. This was all a bit mysterious because this drug is widely used by GPs in these countries. And they said, well, why are the GPs giving people something that clearly doesn’t work. It’s no better than placebo. But if you pulled out a subgroup of patients, ones who complained that their, their pain was much worse when stimuli were delivered, it wasn’t like an ongoing pain. It’s a, you know, if the bedclothes touched their painful foot, that caused pain. Then in that subgroup the drug worked really, really, well.

So, that’s one example. And that came out a few years ago and the European Medicines Agency, on the basis of this, said from now on, you can do a clinical trial, a study of a drug and look at subgroups. This is sort of harnessing this idea that there’s different mechanisms and we should start to see the results from these trials in in the next couple of years, I imagine where a number of other drugs will be looked at and saying do they work in everybody? No, they don’t. And can we identify who’s going to respond?

Evans: I guess the number of subgroups and sub subgroups should be infinite. We’re all different.

Dickenson: Well, yes, that’s quite possible. But if you do these studies in this mixed group of patients, it’s clear that it it does work in some of those. And so the idea is to sort of try and get this sorted out, and there’s another example of this which is complicated, but I find absolutely remarkable. So these pathways that come from the brain back to the spinal cord are deep in our brain stems. You know, they’re completely invisible. You could do an F MRI scan and you could see activity, but that’s never going to happen routinely. But what you can do, and it was based on science that’s been taken into the patients. If you have a pain somewhere in your body and you apply a second one, the second pain will inhibit the first. And so it must be some sort of mechanism for the brain to focus on one pain when there’s two. But if one pain can inhibit another, it turns out that this is using these descending pathways, the inhibitory one and so the identity of the transmitter in those pathways was done.

It was where we actually did in basic science, so we said, OK, so you apply a painful stimulus. It inhibits the second one. It’s a transmitter called noradrenaline. It’s in the descending inhibitory pathway and this of course can be applied very easily to subjects and patients. All you do is apply a second painful stimulus and quite often you know it’s, I don’t know, heat on the hand or ice water on the foot or something. And in patients this pathway is lost. It’s gone. This descending inhibitory control has disappeared, and it’s in many patient groups, patients with neuropathic pain, patients with osteoarthritis, migraines etcetera, etcetera. So, this now enables you reasonably simply one pain against another in the patients. Does your descending pathway work, or not. And there’s two drugs that elevate enhance noradrenaline levels and they were tried in these patients and interacted with this mechanism, so we can start to say now we have a mechanism that’s gone wrong, we’ve lost it. It’s failed in patients, but we can bring it back with the correct drug that elevates this missing transmitter nor adrenaline. So that becomes a very, very sort of precise way of looking at a mechanism in individuals.

Evans: So you’re not treating the initial pain with further pain, you’re actually changing the chemistry.

Dickenson: Yeah.

Evans: The Processes.

Dickenson: You’re putting back the normal chemistry that should be there with the correct pharmacological agents. And if you take drugs that don’t work on noradrenaline, they do nothing to it. So, it enables you to kind of like focus in on what’s going on. And then one of the arguments has been well, you know if you have to do this sensory testing to try and get these profiles of patients and if you’re giving one pain against another, it’s complicated. You can’t use it routinely. But the clinicians who’ve been working on these have produced very simple bedside versions of these. Which should be much more widely applicable, so I think we’ll start to see, you know, in a number of different contexts. The use of this idea of kind of profiling and homing in.

Evans: So the very basic kits, if you like, that you’re talking about and what do they consist of, how do work?

Dickenson: Right, so there’s these kits. So, you basically have like a cold roller, a warm one. You have a brush, you have a pokey [laugh] stick kind of thing. The other one has, as I said, you just kind of need a heat source on the hand for example, and then you go how painful is that? Put cold, ice cold water on the foot. In a normal individual, one inhibits the other. In these patient groups very often this system has failed, so you can do it sort of relatively sort of simply now, and I think that’s the way that pain medicine is going to be going.

Evans: I’m going to go back to the explanation of pain that we started earlier. Are you saying there’s just one spot in the brain that is the pain bit?

Dickenson: No, it’s been called the pain matrix and the idea is that it’s a number of areas that become activated by pain and some of them are to do with where is my pain? How bad is that pain in in terms of that sensory input? And then we have all the emotional parts of the brain, the kind of fear, the anxiety, the worry that the pain causes, the aversion, the unpleasantness. And so it’s a combination of all of these events, and so in a very kind of focused way, theoretically you could do lots of brain scans on individuals and see what this pattern of activity is.

The trouble is it’s no good for kind of routine work at all. So, the idea is to use these sort of sensory tests to apply stimuli and get the patient to tell you, and again the same German group but a French group did the same, and again it’s for neuropathic pain, but it needs to be done with osteoarthritis, post-surgical pain, you know other pains as well, but they just produced a questionnaire and so it’s a very simple questionnaire. You could give it to somebody if they’re waiting for a GP appointment or something and say just fill in this questionnaire, it takes a few minutes and it just says, you know, what is your pain like? Is it burning pain? Is it there all the time? And so you can build up a profile by questionnaires as well as using the more sort of complex techniques.

Evans: That’s Professor Tony Dickenson, who I spoke to in 2022. He touched upon the role of brain imaging to identify areas within the pain matrix. We’ll return to that a little later, but for now, we’ve talked about the pharmaceutical elements of pain relief. Well, what about the psychological elements? Psychologist and scientist Doctor Beth Darnall is a professor in the School of Medicine at Stanford University, where she directs the Pain Relief Innovations Lab. She’s been involved through practise and research into the best ways of tapering or reducing the level of opioid medication the patient is taking using a psychological approach, I spoke to her at the British Pain Society annual scientific meeting in 2023 and the question I put to her was that, surely relief is pain relief. There is nothing psychological about pain relief.

Darnall: And yet everything is psychological about it. So I mean, if we look at, you know, even the definition of pain from the International Association for the Study of Pain, it’s both a noxious sensory and emotional experience. So, psychology is baked into our experience of pain, and the intensity of pain that we experience and how much we suffer from it can be influenced by our history, by our gender, by our biology, by our expectations, our beliefs, our thoughts.

So, I’ll give you an example, because this is involves opioids. So, Irene Tracy famous researcher right here in the UK, she and her colleagues did a really cool experiment and they brought people into the laboratory and everybody in the experiment in this study got two things. They got heat pain on their hand and they had an IV placed in their arm, and what they were getting in the IV was Remifentanil, which is a powerful opioid medication. So, you’re getting pain and you’re getting opioids, but there’s three conditions. Condition one, people are told, OK, you’re going to feel the heat pain, but no problem. You’re going to get the medication, so you’re not going to feel anything. Condition two. There was deception and condition two. And they said, well, you know, you’re going to feel the pain. We’re just giving you salt water in your solution, so be prepared that you’re going to have discomfort. You’re going to feel the pain. In condition three, they said you’re going to feel the heat pain and we’re going to give you a medication that’s going to worsen your pain. So, we promise you won’t be harmed. But be prepared that you’re going to have more pain, now in all three conditions. They’re getting the pain and the opioids. The only thing the researchers are manipulating is people’s expectations, their belief about what they’re getting in the IV. Fascinating studies.

So what the researchers found was that when people really and truly believed and were getting Remifentanil, the analgesic benefit of that medication was doubled relative to when people believed they were getting the placebo, the salt water, and when people believed that they were getting something that was going to increase their pain, it completely abolished the analgesic benefit of the Remifentanil all they were manipulating was a person’s beliefs. So that’s just one example of how powerful our mind is it. It doesn’t just influence how much pain we may feel. It can influence how well our medications work. You know, that’s just one example. But you know, look, you’re right. I mean, any of us, any of us, you know, we place our hand on a hot stove. We’re all going to have a universal experience. We’re going to feel pain. We’re going to feel shock. We’re going to have automatic withdrawal responses that’s universal.

Evans: With that experiment where you’re basically lying to the patient about what’s going in them and telling them this will work. This won’t work.

Darnall: Yeah.

Evans: In the boldest sense of that, physicians should just lie to patients and say this is gonna be brilliant.

Darnall: Well, I will tell you I am not a fan of lying. I mean, I’m a very staunch advocate of informed consent always. Here’s a caveat though. One of the ways in which we will do medication titration in the hospital settings is let’s say people are on a, you know, a mix of high dose medications and there’s a need for whatever reason to reduce those medications, decades of research has shown that one of the best ways to do this is using a blinded cocktail. So, what that means is that the patient isn’t told what changes are going to be made to the medication, but the doctors know. Now, the caveat, though, is that the patient knows going into the hospital that they’re going to have medication changes and they will not know what those changes are.

So, it’s not that we’re doing something without people’s consent. Patients are consenting to have their awareness in the medication titration process removed. And what the literature shows is that when we remove our awareness, there can be some pretty stunning results. It’s expensive, it’s not scalable. Very few people have access to this type of, you know, it requires a lot of physicians and sensitive changes to medication. So that’s, you know, an interesting truism, but I’m not an advocate of lying to patients.

Evans: Of course not. Well, Beth Dunnell mentioned the work of Professor Irene Tracey. And as luck would have it, she was at the same British Pain Society annual scientific meeting. She’d just been appointed Vice Chancellor of the University of Oxford and the British Pain Society wanted to publicly recognise her pioneering work in the field of pain.

Professor Irene Tracey: I am delighted to be at the British Pain Society to receive an honorary membership, which I’ve just been awarded just about half an hour ago and this fills me with enormous pride and I feel very honoured that I’ve been recognised in this way for the work I’ve done over the years and my team. So, for the past twenty-five years, the research team and I have been trying to unravel the mysteries of how the human brain constructs the experience of pain. Whether you’re everyday, you know, acute pain that helps protect you as a warning signal, and then more challenging the problem of chronic pain, and how the central nervous system, particularly the spinal cord, in the brain. How that again puts the signals together to give the patient their experience of pain and also how the brain and the spinal cord contribute to the maintenance and the worsening of chronic pain states.

So what are the mechanism that are holding people in these persistent pain states and amplifying the experience. And so we’ve used brain imaging tools and other types of tools to try and look non-invasively inside humans to see what’s going on. And it’s been an amazing journey and I’ve been very fortunate to work with extraordinary people over those twenty-five years.

Evans: I can remember we did meet many, many, years ago I have fibromyalgia and the debate does it exist or does it not exist? I can remember straight away you saying I’ll show you it.

Tracey: Yeah, so I mean, although that’s one of the few conditions we haven’t really focused on ourselves, I think what I was showing you was some of the amazing new imaging work done by other groups. In fact, just this week, I’ve had Dan Claw from Michigan in the USA who’s been a real pioneer in the newer imaging of fibromyalgia come and visit us in Oxford and stay with us. He’s a dear colleague and friend. And I think what I showed you there was unarguable data that showed that the brains of people who sadly suffer with fibromyalgia are miserably different to those people without a pain condition and fibromyalgia. And that is both using data that looks at the structure of the brain and its and its wiring, as well as its, you know, its chemistry and that then becomes very difficult for people to argue against. When you can see it. And that’s, I think, the beauty of imaging is, you know, it’s so visible and it’s more understandable I think for people than other types of scientific data.

And I think that helps again, give people who are patients who’ve maybe been felt that they’ve not been believed a sense of you know, finally here’s some proof for what I’ve been saying. And you know, just giving that ability to give that visualisation and that objective data can be very empowering. And then we can move the conversation on and start to say, right, what are we gonna do about it? Let’s stop arguing about whether it exists or not. It clearly exists. Now, why is it there and how can we fix it?

Evans: An interesting thing, not just fibromyalgia, but with all chronic pain conditions. What fascinated me was that through your imaging, you can see that when there’s a pain stimulus, it’s not just a pain area that lights up even if there is such a thing as a pain area, it’s all sorts of things. Emotions.

Tracey: All sorts. That’s right. So it’s this incredible set of brain regions that becomes active even just to a little pinprick on your hand, both sides of the brain activate. It’s all the bits of the brain that you need to activate so that you know it’s on my right hand. It’s a short stimulus. It’s a long stimulus. It’s a mechanical as opposed to maybe a thermal, you attend to it, so you need to grab the attentional system. If the stimulus is still continuing, you are gonna activate other systems in the brain that are gonna tell you what to do about it. You know, take your hand away or remove yourself from the situation that’s hurting. Remember what caused it. Of course, you’ll have an emotional reaction about it as well, so all of those different things, even just to a very simple you know, pinprick have to be processed by different brain regions and that’s why it’s such a huge area. And then the complexity in that is how in all those different regions, how can we sort of disambiguate, which are the set of regions and networks that are encoding the hurt elements of it.

So, although those other areas are really important, because that’s all part of the multi-dimensional experience of pain, the fact that it commands your attention and all these other features. In essence, you still want to try and track down where’s the hurt bit of it, and that’s still a bit of a mystery. You know, we got sort of various regions and networks that we think are really important and one can do preclinical studies to be more causal in verifying, you know where those bits are. So, the progress is coming along fantastically well now and it’s been a great journey and it’s a great area for young people to come into because there’s plenty more really fantastic questions to pursue.

And so I shall, even though my role as vice chancellor, I will not be able to run the lab. And so I’m handing the, you know, the lab. The lab will continue. And obviously I’ve trained lots of people. So there’s wonderful people carrying on with the work. And that’s the most important thing. And I’ll be cheering them on from the sidelines and doing everything I can maintaining my membership of the British Pain Society and championing pain in the role I have as vice chancellor. So, I’ll be involved more from the sidelines and we’ll be watching with interest. You know how the field progresses particularly in the neuroimaging space, which is where I’ve largely sat.

Evans: Well, congratulations on the recognition you’ve received today and it’s greatly deserved.

Tracey: Thank you very much, Paul. And once again just you know a huge thanks to the British Pain Society and the council for the election and the honour, and I wish everybody all the very best going forwards. And keep up the good work.

Evans: Absolutely. Professor Irene Tracy, Vice Chancellor of the University of Oxford. Now, Empowered Relief. It’s a psychology-based intervention that provides individuals with essential pain relief skills. It was created by Doctor Beth Darnall of Stanford University, who we heard earlier to be delivered by certified clinicians as a resource for those seeking relief from acute or chronic pain. So as we’re finding out, there’s more to pain relief than just medication.

Darnall: Look, we’re humans and it’s true. That there’s more to everything than the thing itself. And what I mean by that is there’s us. We’re interacting with everything. Whether that thing is a person, whether it’s an activity, whether it’s a medication, but we bring ourselves in our current state into that interaction with people, with treatments, with what have you, I mean in this is why we have individual treatment response. You know, everyone’s different. We’re bringing ourselves into the equation, but because we’re bringing ourselves, I have always felt very strongly that we need to set people up for success. And that’s why when it comes to something like opioid tapering, we want to make sure people feel safe. They feel comfortable, they feel in control because from that foundation you have the best chance of that treatment working and this case, it happens to be a tapering intervention, but it’s true for surgery too. So, we focus on giving people treatments before and after surgery to enhance their surgical outcomes.

Evans: You’ve used the word empowered relief. Does the patient have a role in their own pain relief?

Darnall: Yes, they do. That’s essentially where I focus on is on helping people either reclaim or cultivate, you know, their own empowerment within the context of managing pain. So, there are things that you and I can do to help ourselves. We’re not born knowing how to do that. It must be learned. This is true for all of us. With Empowered Relief, for instance, I just put together an efficient toolkit or intervention so that ideally people can get that information, acquire some effective skills and tools, and then be able to use those to begin to alter neurobiological, physiological patterns. That without that skill set, we’re going to respond to pain in a very predictable way, and it doesn’t necessarily, it’s not a helpful way.

Evans: So what are those tools that a patient can tune into?

Darnall: So several key ingredients. One of the first and foremost foundational principles is to provide education information. What is this? Why does it matter? How can this help you? So we just provide that general rationale because most people don’t necessarily understand that or you know how and why would they? Right so, providing that foundational information, providing information on the connection between how pain naturally impacts us, how stress naturally impacts us, the connection between the two.

And then three core skills. These are pain management skills that are commonly taught in treatments such as cognitive behavioural therapy for chronic pain, acceptance and commitment therapy. These are treatments that typically a psychologist would deliver one-on-one or in a group format, covering a variety of topics. This includes people learning how to decrease hyper-arousal that stress and tension, that pain naturally causes. So, if you or I experience pain right now, we’re going to have a response to that. That’s neuromuscular, but it’s also going to change our thought. You know, our attention is going to be grabbed by it. So, we want to start to disentangle what pain has taught us in order to survive and to be able to reverse some of that because those hardwired responses overtime actually amplify pain.

This is like the cruel irony of having a human body. Our body stores responses that end up working against us, so it’s learning a simple skill set where we learn to calm the nervous system, where we identify our unhelpful patterns of responding to pain. So for instance, if I have migraines, I might just sort of start to feel something coming on and then I might start to focus on it and worry about it. I’m not going to be able to finish this interview. I won’t be able to do my session this afternoon. I might, you know, start to ruminate about it, that process, while we can understand that why I would do that makes perfect sense. And yet that actually can bring to bear the thing that I’m concerned about.

Evans: That’s called catastrophising, isn’t it? Worrying about things that may never happen?

Darnall: They may never happen, but they might happen too, so catastrophising can be rooted in deep learning. You know, this always happens so. I’m justified in thinking this way, and so I’m always here to validate people. Of course you’re thinking that way. And of course this, that or the other. So it’s there’s no judgement about it. It’s just simply recognising we have one goal and that’s to help you get relief as quickly as possible, the strategy is to interrupt that thought pattern as quickly as possible. There’s scores of studies that have shown that our thoughts and our attention can serve to amplify pain or we can de-amplify it. We can calm it.

So, I’m just invested in moving people as quickly as possible to relief by extinguishing unhelpful patterns that are not serving us because they’re not helping us. They’re backfiring against us. So, the focus of Empowered Relief is about extinguishing things that are unhelpful. The neuromuscular patterns that are unhelpful. OK, let’s start to extinguish those cognitive and emotional patterns that are …let’s extinguish those and then interrupting those using some key tools.

Evans: But for people starting out on their chronic pain journey, it’s a huge leap of faith. People will go to the doctor and they want that pain relief. They want those tablets and it’s a huge leap of faith to jump from that to seeing a psychologist who says now we’re going to change the way you think about your thing.

Darnall: Totally, absolutely. And I’ll tell you that is the main reason why it’s called Empowered Relief. It’s not pain psychology 101. You don’t have to be a psychologist to deliver Empowered Relief. So, I certify healthcare clinicians of any discipline. So, you can be a physician, a nurse, a physical therapist, you know, mental health practitioner you name it. Ironically, as a psychologist, one of my main goals is destigmatising the psychological elements of pain and the psychological treatments or those aspects. It’s not psychological treatment, it’s pain treatment. We’re treating pain. We’re treating pain proper. We’re not just helping people cope with the pain they have. Our research shows that pain intensity decreases four months after people receive this treatment.

Evans: So, they have that before the operation. It’s part of the complete process.

Darnall: It’s part of the complete process. They may or may not receive it before, some people receive it right afterwards. It depends on the person and what they want. For some surgeries, it’s better to get it right after surgery because before surgery there may not be time if it’s an emergency surgery. Also, people are very focused on the surgery. There’s a lot of details. People’s minds are more focused on the surgery than anything else. However, after the surgery, they have nothing but time. They’re focused on their recovery and they want to get better as quickly as possible. They’re more motivated and so we find, you know, we can give people an iPad in the hospital after surgery. They can engage with this or they can take an online class from home. And get the information and then begin using those skills.

Evans: Doctor Beth Darnall. You can find out more about Empowered Relief at the website: www.empoweredrelief.stanford.edu . As in every edition of Airing Pain, I’d like to remind you of the small print that whilst we in Pain Concern believe the information and opinions on Airing Pain are accurate and sound based on the best judgments available, you should always consult your health professionals on any matter relating to your health and well-being. They’re the only people who know you and your circumstances. And therefore the appropriate action to take on your behalf.

Now it’s important for us at Pain Concern to have your feedback on these podcasts so that we know that what we’re doing is relevant and useful to know what we’re doing well and maybe not so well. So do please leave your comments or ratings on whichever platform you’re listening to this on, or the Pain Concern website of course, which is: www.painconcern.org.uk that will help us develop and plan future editions of Airing Pain. Last words to Beth Darnall.

Darnall: The most exciting aspect in my recent career is that medical institutions and surgical hospitals and clinics have adopted Empowered Relief as standard care. So, anybody who goes to Cleveland Clinic to have spine surgery, they get Empowered Relief, as part of their spine surgery care pathway, it’s not separate, it’s not psychological. It’s pain care.

Transcript Ends

Transcribed by Owen Elias

This edition of Airing Pain has been supported by an unrestricted educational grant from The Guy Fawkes Trust.

© 2024 Pain Concern. All Rights Reserved.

Registered Charity no. SC023559.

Company limited by guarantee no. SC546994.

Pain Concern, 62-66 Newcraighall Road, Edinburgh EH15 3HS

This edition of Airing Pain focuses on the treatment of pain, the importance of catering treatment to a person’s individual genetic makeup, and why addressing the psychological dimensions of pain is crucial in treating it effectively.

The process of finding a medication or treatment that works for a person often involves a lot of trial and error, which can be a frustrating process for someone to go through. This process can be side-stepped through the use of personalised medicine, where information about a person’s genetic makeup is used to tailor and optimise their treatment so it is as effective as possible.

Although medication is oftentimes a vital part of treating pain, incorporating psychological treatment alongside medication can be hugely beneficial when it comes to making pain management better for those living with acute or chronic pain. Changing how someone thinks about pain can enhance their response to the physical components of the treatment they receive.

Our contributors for this edition discuss the ways in which the treatment of pain can be made more effective for people by incorporating personalised medicine or psychological treatments into a person’s care plan.


Contributors:

Professor Tony Dickenson, Professor of Neuropharmacology at University College London

Dr. Beth Darnall, PhD, Professor of Anesthesiology, Perioperative and Pain Medicine at Stanford University School of Medicine. Director, Stanford Pain Relief Innovations Lab.

Professor Irene Tracey, Vice Chancellor of the University of Oxford and a Professor of Anaesthetic Neuroscience in the Nuffield Department of Clinical Neurosciences.


Thanks:

This edition of was made possible thanks to funding from the Guy Fawkes Charitable Trust and support from the British Pain Society.


Time Stamps:

1:11 Paul introduces Professor Tony Dickenson, a professor of neuropharmacology at University College London.

3:21 Professor Tony Dickenson discusses ‘precision medicine’, ‘personalised medicine’, and how looking at peoples’ genetic makeup can help medical professionals treat pain more effectively.

14:21 Paul introduces Dr Beth Darnall, a psychologist and scientist from the School of Medicine at Stanford University, who he spoke to at the British Pain Society Annual Scientific Meeting 2023.

14:54 Dr Beth Darnall explains the psychological components of how people experience pain.

20:24 Paul introduces Professor Irene Tracy, the Vice Chancellor of the University of Oxford, who he spoke to at the British Pain Society Annual Scientific Meeting 2023.

20:57 Dr Irene Tracy discusses the work she’s done on neuroimaging and how the human brain constructs the experience of pain.

23:22 Paul and Dr Tracy talk about what neuroimaging tells us about the multidimensional way the human brain reacts to pain.

26:06 Beginning of discussion about Empowered Relief, a psychology-based intervention that provides people with skills and tools to help manage their acute or chronic pain.

26:31 Dr Beth Darnall discusses the psychological side of treating pain and how empowered relief is used to help people manage their pain.

29:10 Dr Beth Darnall talks about the psychological tools people learn through Empowered Relief and how they help with pain management.

If you have any feedback about Airing Pain, you can leave us a review via our Airing Pain survey.


Additional Resources

Airing Pain 100: Glasgow Pain Education Sessions

Empowered Relief

Pain Matters 80: What treatment really works

Dale Rockell listens to, and reviews, edition 142 of Airing Pain: Societal Inequalities and Disparities in Pain Management.

A profile image of Dale Rockell.

Dale Rockell is a photographer, blogger and Airing Pain listener who lives with fibromyalgia.

As someone living with Fibromyalgia, I have an active interest in learning to live better despite chronic pain. I welcome each episode of Airing Pain, hosting experts in pain management and research, conversations with others living with pain, and how the overall approach to supporting those living with chronic pain may develop. Presenter Paul Evans also lives with chronic pain, and this brings a strong element of understanding and personal experience to the interviews.

Exploring inequalities

It won’t be news to those living with chronic pain that there are inequalities in support and understanding across the UK health care sector, which still exist in 2024. We must be grateful that research is able to pinpoint this, and that Airing Pain attend events to speak with those undertaking such important work and bring it to the attention of a wider audience. Many may have experienced inequality in their care firsthand, I have certainly experienced the disbelief and reluctance of medical professionals when trying to discuss my challenges with Fibromyalgia.

Musculoskeletal pain care

In episode 142 of Airing Pain, Paul investigates how societal inequalities in gender, ethnicity, disability and locality, impacts access to consistent levels of care for pain patients. While the episode and research discussed is looking at care for musculoskeletal pain, the outcomes, we would hope, would create improvements for other chronic pain support. With high-quality reporting and production style, the conversations highlight the shortfalls in support from GPs to Pain Clinics, and across all medical professions that may interact with pain patients.

Professor Jonathan Hill presents research that paints a picture of how diverse and significant inequalities, and even discrimination towards those with pain can be, based on the above factors. He also discusses the underlying causes and possible solutions; from upskilling requirements at GP practices to taking time to listen to what matters to

patients, with empathy and understanding. Dr Hill also identifies that there needs to be a level of care for pain patients more akin to other conditions like diabetes, where patients receive structured education about their condition and experiences, and ongoing support to manage and live with chronic pain.

Discussing stigma and cultural differences

Another key point for me was Dr Whitney Scott highlighting that stigma of one’s condition, enabled by societal and cultural narratives, can lead to an internal stigma of self and feeling invalidated by others.

Dr Ama Kissi discusses her research into why education is essential in how cultural differences affect how pain may be expressed by patients and why racial biases influence how this information is interpreted. She also shares her personal experience in this area, allowing the listener to relate to her and what is being discussed.

Putting findings into practice

While those living with pain will welcome insights into research being undertaken in these areas (and be extremely thankful to Airing Pain for bringing them to wider attention!) they will also be wondering how such improvements would be rolled out through the medical community, given the current extreme pressure to deliver services. The episode highlights that while the UK health sector is struggling to provide support to pain patients, digital solutions may provide opportunities in cost and time efficiency.

It’s vital that Pain Concern, The British Pain Society and other pain organisations continue to ask these key questions and bring to light the individuals researching, presenting and proposing avenues to educate and improve the support provided to all of us living with chronic pain, as well as the knowledge of medical professionals.

Importance of advocacy

I am someone who has felt driven to engage in advocacy with the Fibromyalgia community and have become increasingly encouraged to be vocal for men with chronic pain, I have found that raising awareness and understanding of pain issues is an uphill challenge, and mostly confined within our communities.

This episode emphasises chronic pain is a medical condition that is overshadowed by other conditions in terms of research and improvement in support available, and in some cases by outdated beliefs and attitudes. Airing Pain, Pain Concern, and The British Pain Society understand this, the least those of us living with pain can do is take a listen. We must learn to better advocate for ourselves from the information provided, share episodes with our online communities, contacts in medical professions and loved ones, increase awareness, and hopefully improve our own quality of life.

A mid-shot of Beth, looking at the camera with one hand under her chin.

Narrated and introduced by Beth Evans, editor of Pain Matters.

First published in Pain Matters 85.

In November of last year, Liz, 33, ran the Brighton 10k to fundraise for Pain Concern. She was inspired to do so because of her friendship with Vicki, 33 an office administrator for Pain Concern who has lived with persistent pain for many years.

I sat down with the two of them to chat about how the run, the supportive nature of friendship and what Liz doing the run meant to the two of them.

Beth: How long have you guys been friends for? How did you meet?

Liz: We were discussing this. We’re like, how long has it been? We met in second year of university which would have been 13 or 14 years ago now, which seems mad that we’ve known each other that long! We met through some friends of friends, and we all ended up living together in our third year. We kept in touch over the years after we graduated.

B: What university did you both go to?

Vicki: University of Nottingham.

Liz: Yeah, this is the clever one, she did maths!

B: So you’ve known each other a long time then?

V: Yeah…and many more to come.

B: When did this journey begin? When did you start having these conversations and how did it manifest into running a fundraising 10k for Pain Concern?

L: I’ve been doing a bit of running since having Jake just to get back into physical fitness and it’s good for my mental health. I’ve been talking to Vicki throughout her volunteering at Pain Concern and then more recently having a role there and appreciating how important it is for Pain Concern to continue doing what it does. I thought there’s a 10K that I can do to sort of challenge myself and give me something to work towards, but I can also do what I can to try and help Pain Concern at the same time and raise some money.

B: How do you both feel on the run up (pun intended) to the 10k? What are your hopes, any dreads?

L: The dreads one is easy because it’s November and I’m going to be running along Brighton sea front and at the moment we’ve got that Storm Ciarán here. So I’m really worried it’s going to shut it down with rain or it’s just really windy and I’ll be running into the wind, which won’t be fun but hopefully I can raise some good amount of money which will be useful for Pain Concern. I’m just hopeful that I can finish and in a good time as well.

V: I’m feeling excited for this because I know that she enjoys running and it’s great that she’s getting back into something that she’s enjoying. And I think about the training, so recently going from a 5K to training to a 10K, I think that’s great.

B: How do you both feel about it in terms of supporting Pain Concern?

V: Liz is great fun and it just generally shows how much of a supportive friend she is. The fact that she’s willing to do it. But if I’m honest, it doesn’t surprise me because I know she’s amazing. But yeah, very grateful.

L: Yeah, I feel quite nervous coming up to a race. But on the day, when you’re running and if you’re doing it for a good reason, you can think about that as you’re going along and it sort of stretches you from the “ooh, I can’t breathe!” to the “yeah, there’s a good reason that I’m doing this.” That’ll get me through the finish line.

B: What can you tell us about your journey with pain, Vicki?

V: So my pain began literally overnight 24/7 in 2013. I had many years where I’d seen various different specialists but didn’t have a diagnosis; I had a lot of experience of healthcare professionals disbelieving me and making me feel like it was in my head. At one point I was actually referred to psychiatry but was discharged from them immediately. They said it wasn’t the right place to be.

Over the years I was diagnosed with fibromyalgia and endometriosis. I’ve had a few surgeries for endometriosis and two years ago I had a hysterectomy for a condition called adenomyosis.

It was a long recovery but since then, working on self-management and then therapy to help with the mental health side of things. I’ve accepted the pain and through accepting it, that’s helped me move on in life and get back into sort of, I guess what you would call a more “standard life”; working and not everything being affected by pain. Difficulty leaving the house, I don’t have that anymore. I feel like I don’t see pain as my identification anymore, which I did before.

L: I’d like to add to that because of my perspective, living with Vicki at university and knowing Vicki then. We had a good time; we would go out and we would drink and dance. And then I remember back in 2013 when she started getting the first symptoms and I think you were saying you got pain in your hands.

Then sort of gradually seeing it; her telling me about it progressing and you can’t really do anything to help and it just gradually getting worse. And then we’d be talking, and she’d be saying how she’s been going back and forth to specialists and GPs and it would be a very long and frustrating process and you can’t do anything.

We would try and meet up near Sheffield and it would be “how’s your pain today, Vicki? How are you feeling?” And it may be that we don’t meet today, we’ll catch up another time and then if we could meet up, it was really difficult to see Vicki not being able to do much because the pain was so bad that she just needed to sit down, and that was quite upsetting as a friend watching her go through that.

It’s been really great to see her gradually, like she said, getting her life back on track and back together and now seeing her being able to do things, go to the theatre and come and visit us in Brighton. That’s been really nice. It’s been a long journey for her and I think if I was in that situation, I don’t think I would have been as resilient and as strong as she has and as positive.

V: That’s really kind Liz. I’m not just saying that you honestly did help. I always find as well as the support you’re fun and upbeat, finding humour. For me to see the funny side of things has really helped. I think humour is a good, well at least for me, coping mechanism.

B: If you could be at the finish line with Liz, what would you say as she crosses that line?

V: Well, other than the obvious of well done and thanks for raising money for Pain Concern to just say thank you generally, she’s helped me a lot living with pain. I’m in a lot of a better position now in terms of self-management and being back in work and exercising, but just generally throughout the years when I’ve had a tough time, often with pain, you end up losing friendship.

So, for example, you might not be able to attend events, so people stop inviting you and you just generally lose touch. But that’s not been the case at all with Liz. She’s always been really understanding and supportive. So, I just wanted to show my appreciation to her because I really do value it.

L: Ooh, that’s lovely. Thank you.

Liz completed her run and raised £550 for Pain Concern – if you’ve been inspired by Liz and Vicki’s story, please consider fundraising or donating to Pain Concern:

First broadcast: 22/02/24

Paul Evans: This is Airing Pain, a programme brought to you by Pain Concern, the UK charity providing information and support for those of us living with pain, our family and supporters, and the health professionals who care for us. I’m Paul Evans.

Dr Jonathan Hill: In some areas, the prevalence of chronic high impact pain is as low as 5%. And in others it’s between 30 and 35%, a fivefold difference.

Dr Ama Kissi: Evidence actually indicates that children of colour, and black children also, tend to receive poor pain care compared to their white peers.

Dr Whitney Scott: What are the cultural narratives? What are the policies? What are the inequities in access to treatment and services that are putting people with pain at risk of being stigmatised or discriminated against?

Evans: In this edition of Airing Pain, I’ll be looking at how differences in gender, ethnicity, disability and locality can impact the access and quality of pain care. According to the Office for Health Improvement and Disparities (OHID), musculoskeletal (that’s joints, bones and muscles) conditions are the leading cause of pain and disability in England. These types of conditions account for one of the highest causes of sickness absence and productivity loss. In its 2022 research, using data right down to individual GP practice level, the OHID reported significant inequalities and disparities in musculoskeletal pain care right across the board. Dr Jonathan Hill is Director of Research for the School of Allied Health Professionals and is professor of Physiotherapy in the Keele School of Medicine. Speaking to delegates at the 2023 British Pain Society annual scientific meeting, he focused on disparities and standards of musculoskeletal pain management in primary care.

Hill: There’s a huge variation happening in GP practice. But, also, when you look at the public health data, you can see five times greater difference in the burden of musculoskeletal problems within some communities than others. Therefore, you would expect two GP practices: one working in an area with a high burden, one working with a very low burden, to have very different sorts of rates of referral, or rates of imaging, or rates of opioid prescribing because you’ve got such differences in the population they serve. I mean, musculoskeletal pain is increasing. It’s higher in women, it’s higher in some ethnicities, but the really big-ticket items are the most deprived areas. It’s much higher, particularly women, in those most deprived areas. It’s much higher in people with Class 2 obesity and those who aren’t being physically active. You know, rates are above 25% with chronic long term MSK (musculoskeletal) pain in those groups. We’ve done some work at Keele University, some colleagues of mine, where they’ve been looking at population surveys and then mapping that. And of course, you get, people who are overweight, people who are physically active, and people in deprived areas being grouped together in some communities much more than in others. And they’re finding in some areas local to us the prevalence of chronic high impact pain is as low as 5%, and in others it’s between 30 and 35%, a fivefold difference. We’re starting to really explore that data, particularly for musculoskeletal patients.

Evans: When we started this conversation I thought, ‘OK, well, this is something that would be great for patients to look up. I’ve got a bad back, which GP should I go to?’. But you’re looking at it from completely the other side, all the external factors, maybe from the social factors.

Hill: Absolutely. What I’m interested in is saying, ‘Well, how can we improve primary care?’. Part of it is to be aware and understanding that each practice serves a very different population. At the moment, integrated care systems, which sort of oversee what’s happening within an area, are often making demands of certain GPs. Perhaps your referrals are too high, but they haven’t got the contextual data. So, if we’re going to be wise and make good decisions, particularly integrated care systems, they need that kind of data. One of the things that I’m very excited about is a dashboard that would allow trusts and ICSs all over the country to upload data from local GP practices, then being able to explore how the practices are doing in the near future. With that data not really being at our fingertips yet, what data do we have looking at the differences across the last five years in areas? Data such as whether or not patients feel that they were communicated well. Were they listened to, were they involved in the shared decisions, what was their overall experience like?

Generally, for most of the experienced things, musculoskeletal is roughly doing the same as some of the other long-term conditions like cancer, diabetes, and cardiovascular. The good news is we’re a bit ahead of mental health, so those patients aren’t getting as good of an experience, except for two areas where we are really lagging behind, from the national data coming through the GP Patient survey. That’s getting a care plan agreed for people with long term MSK conditions, and it’s also patients feeling that they had a consultation where they discussed what mattered to them, not just what was the matter with them. What are they doing in diabetes, which is 20% or so better in terms of patient experience around those two areas than we have in musculoskeletal? What are the lessons to learn? Some of the ideas I’ve been thinking about is that it’s to do with their practice nurses doing diabetic clinics. It’s to do with them having a GP annual review where you can have a health check. Diabetes gets monitored, assessed and there’s some accountability. This isn’t happening for patients with long term MSK conditions.

Evans: Well, I can tell you truthfully, because I have type 2 diabetes and I have a chronic pain condition. I have fibromyalgia. Once you tick the diabetes box, the level of care is excellent, but not for other conditions.

Hill: No, and I think this is the challenge. We need to challenge our integrated care system leaders, to say, ‘This can happen for diabetes. Why is it not happening for musculoskeletal?’. And they will come back to us and say, ‘Well, you help us upskill our primary care workforce’. One of my key messages today was about this upskilling. This integration of the knowledge and skills that you get in very specialist pain services is not available. At the moment, the cavalry that’s coming into primary care for musculoskeletal are these people that have these first contact practitioner roles. That’s what we call them. They’re usually physiotherapists, FCPs for short. At the moment we don’t give them very long and we are prioritizing what they do around triage and diagnosis. We haven’t really differentiated yet a model where, as well as doing that, there’s an opportunity for them to run something which looks a little bit like the clinic that you’re talking about run by the practice nurse treating the patients with diabetes. I think it might not be the FCP, it might be someone else in the primary care team to consider. But there’s a real job to do to work out how we upskill them and how we set up the structures to allow that kind of clinic to work. Clearly, the national data at the moment is saying we’re some way behind in terms of patient experience for musculoskeletal than we are for diabetic care. Well, what is it that they say works, when you interview the practice nurses, the ones who are doing the diabetic clinic?

I came up with a lovely study done by Hall and Tolhurst and they had looked at essentially some key themes that emerged from that. The first one was that these people really need good skills of communication. That’s the key thing. Empathy, understanding, tailoring the need. They also need to have better access to support for those with complex needs. We know that it’s the same in diabetes as it is for musculoskeletal pain. They also really had some reservations about the massive push for digital, saying they’re finding out that patients don’t really want to use these apps. There’s still lots of need for humanity in terms of contact, that personal interface. And the last thing that they really pointed out was medication is such a big part of the management. It is for MSK, for long term MSK problems, and yet these clinics are often run by people who are non-prescribers where there’s a bit of a problem there. Particularly, if the cavalry we are bringing in is physios who are usually non-prescribers, they need to collaborate with pharmacists. This is so that whoever’s running those clinics we’re not missing the medication piece.

Evans: With a disease like diabetes there is a tick point. There are numbers. There are tests. You are now diabetic. Is there anything like that with musculoskeletal pain?

Hill: It’s interesting. In something like diabetes you’ve got some really key blood tests that allow that. In musculoskeletal, the truth is that the diagnostic, the equivalent of the blood test, is actually a very thorough physical examination. That’s what these FCPs are kind of often doing, a very thorough physical examination. If it’s not thorough enough there, then you can often go through to one of these integrated care services where that thorough examination is going to happen.

There’s something I didn’t tell you which I really want to bring up. Claire Fuller has written this stock take report on primary care and she’s really done a fabulous job. One of the things that she says is we’ve got to differentiate better between people who are accessing primary care infrequently and people who’ve got the long-term complex conditions. I think that if you bring that back to the musculoskeletal context, we need that differentiating happening right from when you’ve got a long-term musculoskeletal pain problem, then you need to be hooked into these annual reviews. These clinics that do these reviews, are very different from you going in with an ankle sprain or something short term, a bit of tennis elbow which should be better in three or four months and you just need the right advice, the right knowledge to know what to do. So how do we streamline the care for those infrequent attenders? For the infrequent attenders, think about digital systems and not just digital for patients, but to think about digital for clinicians. In a survey I had recently done with GP practices local to where I work at Keele University, what we found was the things that they felt that they had really good access to for all these patients with musculoskeletal problems, most of them, the vast majority being infrequent users, was things like social prescribing which is great to hear. Services such as generic mental health, IAPT, and other sorts. MRI scans and joint injections which are perhaps questionable particularly for spinal problems. They’re perhaps better for things like knees and shoulders. But they felt that they really struggled to get good access to some very high value things like pain services, escape pain programmes, vocational support, things like yoga, Pilates, and tai chi for back pain. They just didn’t have that available unless they just signposted the person back into the community. And in terms of digital, what they were really telling me was, well, the best thing that they had was patient self-management resources that they could click to send people to. But that was only half of the GP practices. And things like knowing when to refer, when to send them for a scan… There’s a great piece of kit called I Refer that GP practices can have that helps them to only refer within guidelines. That was just not being rolled out and isn’t available. So, there’s some real challenges there. The other thing is that with the tech, what’s happening is we’re increasingly seeing examples of innovation happening through small companies. The one I gave was one called Auto Pathways where what you do is you install onto the GP system this bit of software that takes the clinician through an assessment in real detail. I gave the example of showing the back-pain pathway which is, you know, hugely complicated. But it’s all written, it’s all available for the clinician, and therefore even the practice nurse or the non-physio, and non-GP can know what to ask the patient. And when they get to the end of it, there’s a whole set of recommendations for the particular conclusion they’ve come to in terms of the key messaging to the patient. Where in the process to signpost them, what management to think about and what follow up they should be considering for this particular individual. So, there’s all of that. The challenge then is Does the workforce want to operate to algorithms and to pathways, or would it prefer to be much more fluid in the way that it operates? What we certainly know from my experience is GPs aren’t that keen, but some of the other primary care clinicians do seem to be much happier to use those sorts of things. We’ve got a big clinical trial at the moment testing the ortho pathways both quantitatively and qualitatively to look at it and we’ll be interested to see what the results come up with.

Evans: So, what could you do to make those GPs more interested in the online stuff? Time, maybe?

Hill: Absolutely, time, pressure. They have got so much that they’ve got to do and what we’re doing, and what you see happening nationally now, is first contact practitioners coming in to reduce the burden for musculoskeletal. I spoke to a GP recently who told me he doesn’t see musculoskeletal patients anymore. It all goes through to one of these other healthcare professions sitting in general practice. And so, I think that’s where the innovation will come, not that GP colleagues couldn’t do it because they actually do a fabulous job. But a lot of the innovation is likely perhaps to come with the people with the new roles, who are much more open. But I think what we need to do is make sure that those new roles are not just focused on the diagnostic piece. We also have this care, this support, this slightly more long-term condition approach, we’ve differentiated what does that look like for primary care, how do we treat patients with complex problems much better?

A trial that’s got me really excited just recently is called the Restore Trial, just published in The Lancet. Peter Kent was the first author, and essentially a team in Australia between Perth and Sydney did this very big trial. What they were looking at was whether it was effective to upskill mainstream physiotherapists with psychosocial skills to treat the complex chronic back pain patients. And absolutely, they found it was. But what excites me about Restore is that they managed to do that really effective training piece. Not only was it clinically effective, but once again they’ve shown it was incredibly cost effective to do this. Roughly it costs four times as much to send someone through a pain clinic, as it does to send them through a physio clinic. We just don’t have capacity in the pain clinics. So, I was urging the conference here to think about integration where we use the skills in the pain teams to upskill, just like they have with the Restore trial. What did they do in the intervention? Well, they gave them seven sessions of physio, an hour at the beginning and 30 to 40 minutes for follow up. But they focused on three things. The first thing was they trained the physios to really help the patient to make sense of their pain. And you know, understanding their beliefs, their fears, what they were avoiding, was there protective guarding going on? Were there activities they were avoiding because of their condition? They discussed their sleep routines and their dietary habits. All of that piece. They really got the physios to take a slightly different approach and to look at that with the patient telling their story. The next thing they taught them to do was to really give effective graded exposure to the feared movements, the feared activities, really building strategies and build confidence for patients. Show them that yes, they could do that, from working them through things that they felt confident about initially to the things they were really scared of, and just take them through that programme. The last thing they really focused on was lifestyle change. Thinking broadly for the patient, what would they like to do around physical activity? What was their preference? What could they get them hooked into? Could they adopt healthy sleep and dietary habits? Could they think about stress management? Could they think about social engagement where relevant? With those physios there was a much more holistic approach than they were normally doing. And yet they found this huge impact on the patients when they did that. Now I don’t think that’s rocket science, but the truth is it’s not something that patients are getting. Too often at the moment patients are only seen just over two times on average with physio. We’ve got to push back to rehabilitation type physio, physio that differentiates. And if you’re an infrequent user, yeah, you get a short, ‘Here you go’. But if you have got a long-term complex problem, we really do give you the sort of treatment like what the Restore trial shows which makes a difference.

Evans: That’s Dr Jonathan Hill, Director of Research for the School of Allied Health Professionals at the University of Keele. Another one of the speakers in that British Pain Society annual scientific meeting was Dr Whitney Scott. She’s a Clinical Psychologist at Kings College London and has a clinical role at the Input Pain Management Unit at Guy’s and Saint Thomas’ Hospital. Her session looked at the impact of stigma and discrimination in people living with pain, and it’s that word stigma in the context of chronic pain that intrigues me.

Scott: Chronic pain as a condition, particularly when there are not clear kinds of pathophysiological causes which in many cases is the basis of chronic pain as a condition. This goes against what we expect of pain, particularly in Western societies. We expect that there’s a clear relationship between pain and injury. That can be a context where people’s pain can be invalidated, not believed, judged, and those are kind of the stigmatising aspects of pain. And of course, broader societal views about disability, that kind of comes into the role of stigma and the related concept of discrimination. So, we know that disability is one factor for which people can experience discrimination. And of course, there’s also a range of other factors, such as a person’s age, their gender, and their ethnicity. Those can all intersect with the pain experience to make a person with pain more likely to experience discrimination and the adverse impacts of that.

Evans: Well of course, the first thing I guess we have to take into account is that with many chronic pain conditions the pain is invisible.

Scott: Definitely. And I think that’s one of the reasons that stigma can be common because people can’t see pain and they expect that if someone is in pain, there should be some “objective” way of identifying that. But that’s just not how pain works. It’s a very difficult thing to recognise and communicate for people that don’t have pain. It’s a very complex thing, and as humans we don’t grapple with complexity all that well. We like quite simple answers and pain very much goes against all of that. We have to try and wrap our heads around that, if we are to support people holistically and effectively in a very compassionate way.

Evans: So, if I were to stick a notice around my neck, a simple sentence, ‘I have chronic pain’. Well, the first thing that needs justifying is I would have to say ‘What is chronic pain?’ You can’t see it. This is how I feel. This is how it’s affecting me. I’d have to have an awfully long notice board hanging around my neck.

Scott: Yeah. You know, I’m a psychologist so I’m in the business of talking to people about their experiences. It’s never enough time, but we spend a fair amount of time doing just that. It’s not a notice board, but it’s a conversation about what’s the pain like for you? How long have you had it? What does it feel like? And most importantly, how does it impact your life? What are the wide-ranging areas that it impacts? That’s again not something you can just have in a quick sentence or a quick phrase on a notice board. It also requires trust because telling the wide-ranging impacts of your experience, that’s not necessarily something you’re going to do with someone you’ve just met. You might not even do it with people that you’re closest with because that’s a very personal thing. So, I think in being compassionate, not being stigmatising, there are relationships that we need to build. There’s trust, there’s empathy, and all of that’s very, very important when we’re supporting people with pain.

Evans: In your research, have you spoken to lots of people who feel stigmatised?

Scott: This was specifically in the context of people living with HIV who also had pain that was connected to their HIV, either the illness itself or the treatment for HIV. In those interviews, even though we were asking people about their broad experiences of pain, not specifically about the stigma, stigma sort of came out loud and clear. People were talking about not wanting to tell other people about their pain. In some instances, because they were worried that that would reveal their HIV status, but in other instances it was the pain itself that they felt would be stigmatised. Maybe it was indicating that they weren’t healthy or that they were older. Then we’ve done work looking at self-report questionnaires and people that attend treatment at the input pain clinic fill out questionnaires of items related to stigma. So, for example, ‘I felt embarrassed about my illness’ is one item, or ‘Other people avoided me because of my illness’. Then we look at what those kinds of scores relate to. We find that first of all, people score quite highly on that kind of measure, suggesting that stigma is common in people with pain. That then relates to negative outcomes like greater levels of pain-related disability and greater depression. So again, this impact of stigma can be quite wide-ranging.

Evans: We sort of think that the issue is other people putting that onus on us to talk about the pain. But what about the person with pain?

Scott: I mean, these are really complex issues, aren’t they? I think one of the real challenges that I’ve tried to wrap my head around with the work on stigma and discrimination is individuals will experience similar events differently and the impact that it will have will be different. How they communicate that impact will be different and certainly some people may tend to kind of hold that quite close. They may not want to share things that they’re struggling with others. That may be, you know, culturally influenced. In certain cultures when you say, ‘I’m rubbish’ or ‘I’m not feeling well’, that might not be met with the greatest of empathy or that might be something that’s just not done. But I do also think we need to shift a little bit of the focus, or a lot of the focus, from the individual who has been stigmatised or discriminated against to thinking about these broader kinds of social structures or social systems that are enabling the stigma and the discrimination to continue. We really need to be looking at things like What are the cultural narratives? What are the policies? What are the kinds of inequities in access to treatment and services that are putting people with pain at risk of being stigmatised or discriminated against, if that makes sense?

Evans: Lots of questions there. How do you work with people with pain who feel stigmatised? And I’m sure there’s not one answer.

Scott: Yeah, there’s not one answer. I mean, as a psychologist, I am again in the business of supporting people who have experienced life adversities to move forward in the face of those adversities and still make the most of life. To live a rich and satisfying life in the presence of challenges. Sometimes that involves a great deal of what we would call self-compassion. So, bringing that kindness to oneself even when others aren’t being kind to you, even when you might not be kind to yourself. So, if you have experiences of people invalidating your pain or stigmatising it, you may develop what we call this kind of internalised stigma or an inner self critic that tells you that you’re no good. There is stuff that we can do to work with that and to develop that sense of kindness towards oneself. But I’m always interested in thinking about that alongside what needs to happen in society for society to treat people with pain better. Because I don’t want the message to be that it’s just a matter of the person in pain doing differently or doing better. I mean, we all just need to do better so that society is more compassionate and understanding.

Evans: Dr Whitney Scott. Now, for society to be more compassionate and understanding to resolve those inequalities in access and quality of pain care, it would have to resolve discrimination by gender, disability, locality, and of course ethnicity. Dr Ama Kissi was born in Ghana but she’s lived in Belgium since the age of three. She is a post-doctoral fellow at the University of Ghent where she researches the mechanisms that could account for racial disparities in pain care. She’s a Clinical Psychologist and as a Black person, around 50% of her clients are also people of colour who struggle with racism-related stress, discrimination, or trauma.

Dr Ama Kissi: If you look at the literature, what we see there is that the pain of Black people is often underestimated and undertreated, even if they report similar levels of pain intensity compared to white people. We see differences in how their pain is assessed and how their pain is treated. These disparities have not only been documented within the adult population. That’s usually the population that we think of when we think about racial and ethnic disparities and pain care. But evidence actually indicates that children of colour, and black children also tend to receive poor pain care compared to their white peers.

Evans: Why is that? Is it misinterpretation on behalf of the healthcare professional, or is it that we as white middle-class doctors are just not asking the right question?

Kissi: They all seem very relevant to look at. It could be misinterpretation of pain signals. It could be indeed that there are differences in how the pain is assessed, what we look at, or that the difference is in the way that pain is expressed, or not asking the right questions. I think those are all interesting mechanisms to look at. But then if you really look at the evidence that is available at the moment, I think it’s fair to say that we do not have a clear understanding of the mechanisms that could explain these disparities in pain care. There have been studies that have really looked at racial biases like hostile or negative attitudes that perhaps white people can have towards black people. These studies have considered that those could be mechanisms that could explain these disparities. But to be fair, we don’t know a lot about these things and that’s why we want to do the work that we’re doing. Our work really focuses on trying to unravel and understand the explanatory mechanisms of these disparities in pain care.

Evans: Do you have any insight into what might be going on?

Kissi: Yeah, I do think that there are so many factors that might play a role. First of all, I think these racial biases, like prejudice and stereotypes, all of these things might definitely play a role because we see these factors playing a role in other domains, so I definitely think that that’s a thing. I also think that there might be cultural differences, perhaps in how we communicate or talk about our pain, and that could also play a role. Also, there might be differences in how healthcare providers that, let’s say, are white, perceive or code the pain expressions of people that do not belong to their racial or ethnic group. I think that might also play a role there. Another factor that I think also plays a role is empathy or perspective taking because we know from literature that people tend to have difficulties demonstrating empathy or taking in the perspective of ‘the other’ when that person does not belong to their own racial or ethnic group. I think that, that could be a very relevant mechanism in that regard. Within our line of research, we really want to tap into that and zoom into that, but we haven’t gotten really to that point where we have a systematic research approach towards that. But that’s on the agenda. We want to examine that. But at the moment we’ve been focusing on attentional processing as well, attentional processing of facial expressions of pain.

Usually people look at these implicit biases, these thoughts that people have. But I mean when you’re confronted with a pain patient as a healthcare provider, the first thing you need to do is pay attention to that individual, right? And then it’s not only initial attention, you also have to sustain your attention and really look at that person and try to understand what the internal experience is of that individual, what that individual is trying to communicate to you. Because of the importance of attentional processing, we were like, ‘OK, we need to examine that and look at what’s going on’. I think there are so many factors that play a role: on the side of the healthcare provider, also on the side of the patient and then structural as well. For example, there is the fact that in some countries if you don’t have the legal documents to stay in a country, you perhaps cannot use the healthcare systems. These are also factors which play a role.

Evans: What are your experiences of healthcare?

Kissi: As a patient, whenever I go in and talk about my complaints when I’m ill, I always feel like I’m not always taken that seriously. But my partner is white and when he’s there I feel like the consultations always take longer or they tend to direct their attention towards him and talk to him more. I don’t think it’s an intentional thing that people do, but it’s just my observation. Also, I gave birth two years and a few months ago to my son, he’s an only child. My son is mixed race. My birth experience was so traumatic. I had a C-section. After receiving the surgery, we went back to my room in the maternity unit and on the first day I got pain medication. On the second day, I was so focused on keeping that little human being alive and, I’m trying to breastfeed. It was during mid COVID time so my mom was not there to help me. My partner and I, we had to figure everything out. I remember being in so much pain. I felt like, ‘OK, is this normal?’. Nobody came in that day to ask me how my pain was. Nobody came in to ask me if I needed pain medication or anything. In the late afternoon a nurse came in and she was like, ‘I saw on your chart that you haven’t received any pain medication today’. I had just had surgery! I remember feeling so sad because I was really in pain. But it made me also so sad because I realised that I was one of the cases or one of the participants, that I had been reading about in my research. For me that was like, ‘Wow, this is really happening’. There were so many biases that people had, like, ‘Oh, wow, black moms do an amazing job when they give birth’. And yeah, like, ‘Black people, I know you guys can endure a lot of pain and you look so athletic, wow’. And I was like, ‘that is just all so irrelevant’. I felt like people already had this notion or this idea that, ‘She’s good, because she’s black. She can take it, they’re used to enduring hardship’. That was my feeling. I’m not saying it was the case, but that was my feeling. But then the fact that I did not receive pain medication when I should have received it, that was for me a red flag. That was the realisation for me at that moment that ‘Ok, this is reality’. And I knew it was reality, but then I had really experienced it in a very clear manner. It also motivated me to continue this line of research because I felt like this needs to change. This shouldn’t happen to anyone.

Evans: You were saying earlier about your partner, who is white, and the focus of the consultation being to the white partner, not the black partner. Did he notice it?

Kissi: He noticed it, yeah. At the same time, he noticed it but he didn’t do anything with it because he was, at that moment, just engaging in the conversation and talking. Of course, because he wanted to help me. I’m his partner. I’m sick. He’s like, ‘Let me give the information that is needed to help this doctor make a good assessment’. So, it’s double in the sense that he does realise it, but at the same time he’s perhaps so used to situations in which people do listen to his thoughts or what he wants to share at that moment. But I’m happy that he noticed it and I knew that it was not just me, that I wasn’t imagining stuff.

Evans: You’re doing a workshop with healthcare professionals at this scientific meeting with the British Pain Society tomorrow. What are you going to do?

Kissi: I want to make people aware of the existence of racial disparities in pain care and how it manifests. The fact that it’s a widespread problem that we see across different settings like emergency departments, paediatrics, maternity units, so many different settings, in different ages and across different genders. It’s just such a pervasive, widespread problem. I want to make people aware of this problem. I want us to really think critically about the research that we’re conducting. We need to think critically about who are the people that we are testing. Are they primarily white people that we are testing or not? Because that impacts the knowledge that is generated. It can lead to a point where there is a bias in what we know about, let’s say, chronic pain and perhaps that knowledge that we have does not generalise to all of the population. I want people to be really aware and think critically about who are the people that we’re testing. Where did our knowledge come from and to what extent do we really understand or try to understand the lived experiences of people of colour? And How are we including them in our research processes?

I’ve been here at this conference and my students and I, we presented a poster to actually promote more racial diversity in pain research. When I looked around, at all these different posters, the research that was conducted, or at least the research that they were describing, I don’t know, I just felt like I wanted to know more about the people behind the numbers. Who are these people? Are the people that were being tested, people that look like me? Where do I fit in? If I have this knowledge, what can I do with this knowledge? Does it tell me something about my lived experiences or those of people that look like me, or people that I love like my mum, or my son, or my siblings? Those are the questions that I have. It’s a bit disappointing to walk around and to see that there’s not a lot of research being conducted on the experiences of people of colour. I think that’s sad, and I hope we change that in the future.

Evans: Ama Kissi. As in every edition of Airing Pain, I’d like to remind you of the small print that whilst we in Pain Concern believe the information and opinions on Airing Pain are accurate and sound based on the best judgments available. You should always consult your health professional on any matter relating to your health and well-being. They’re the only people who know you and your circumstances and therefore, the appropriate action to take on your behalf. Now, it’s important for us at Pain Concern to have your feedback on these podcasts so that we know that what we’re doing is relevant and useful, to know what we’re doing well or maybe not so well. So, do please leave your comments or ratings in whichever platform you’re listening to this on, or the Pain Concern website, which is www.painconcern.org.uk. That will help us develop and plan future editions of Airing Pain. Last words in this edition of Airing Pain to Ama Kissi:

Kissi: It’s okay for me to come to this conference, talking about these disparities, trying to create awareness and stuff like that. I think it’s invaluable and it’s necessary to do that, but it can’t stop there. I think we all need to rethink the way that we’re conducting research, rethink the way we approach and treat our patients. On a societal level, we need stakeholders, we need leaders to really rethink our healthcare system and make sure that everyone, irrespective of their background, can actually enjoy good quality healthcare. That is one of our human rights. I think we have to really take that seriously and we need to look at ways in which we can make sure that right is executed or that people can enjoy that right.

In this edition of Airing Pain, Paul investigates the significant inequalities and disparities in treatment among primary care pain management services.

Pain Concern would like to remind listeners that the topic of chronic pain can be uncomfortable for those with lived experience of chronic pain. Please read the description for information about this edition’s content.

In a 2020 US study, it was found that ‘Implicit bias remains a contributor to healthcare disparities.’ This can be based on gender, ethnicity, disability or locality, and has the potential to affect somebody no matter their background.

In Airing Pain 142, we begin with specific references to disparities in Musculoskeletal (MSK) treatment, and how we can learn from other healthcare fields to increase patient satisfaction; we then focus on how both internal and external stigma can lead to discrimination in treatment; before ending with a discussion about why ethnic minorities are being inadvertently discriminated against in the pain management setting.

If you enjoyed this episode of Airing Pain, why not subscribe? You can also leave us a review via our Airing Pain survey.


Contributors:

Professor Jonathan Hill is the Director of Research for the School of Allied Health Professionals, and a Professor of Physiotherapy, in the Keele School of Medicine.

Dr Ama Kissi is a post-doctoral fellow at the University of Ghent and a Clinical Psychologist.

Dr Whitney Scott is a clinical psychologist who lectures at Kings College London and is the research lead at the INPUT Pain Management Unit at Guy’s & St Thomas’ Hospital.


Time Stamps:

1:30 Professor Jonathan Hill speaks about the disparities in musculoskeletal pain treatment in primary care.

6:06 Sharing their experiences and research, Paul and Jonathan discuss the differences between Pain Management and Diabetes care.

9:54 Jonathan Hill highlights the importance of differentiating between people accessing pain management care frequently and infrequently.

15:26 Jonathan Hill alludes to the ‘Restore’ trial in Australia, and the success of integrating physiotherapists into the pain management care system.

18:44 Dr Whitney Scott talks about the stigma and discrimination of people living with pain.

24:44 Whitney Scott discusses the way that health care professionals can work with people in pain who feel stigmatised.

26:01 Paul and Dr Ama Kissi discuss the disparities in pain management for different ethnicities and hypothesise why this might be the case.

31:17 Ama Kissi shares her own experiences as a black woman in the healthcare environment – this segment discusses childbirth.


Thanks

This edition of Airing Pain was possible thanks to support from the British Pain Society

Additional Resources:

Pain Matters 84, this edition of our magazine which focuses on the lived experiences of living with pain and the inequalities in public health

A fact sheet from the US Department of Health and Human Services on Stigma and Pain Management

A research article published in ‘Pain and Therapy’ titled ‘Stigma and Chronic Pain’.

Further information on the Restore Trial

A rare job vacancy has arisen to join Pain Concern as a Pain Educator – here is your opportunity to join a small team, dedicated to improving the lives of those who have lived experience of chronic pain.

About Pain Concern 

Pain Concern is a charity providing information and support to people with pain and those who care for them, whether family, friends or healthcare professionals. On our website you’ll find out more about what we do, including our Airing Pain radio programme, Pain Matters magazine, information helpline, community pain education sessions and our research and campaigning work.   

All pain is unpleasant, but for the 7.8 million people in the UK living with long-term pain it is a part of everyday life. It diminishes quality of life more than any other condition, leading often to loss of work, depression and disability. Anyone at any age can develop persistent pain and you will very probably know somebody affected. Although there is usually no cure, people who receive the appropriate treatment, information and support can manage their condition effectively with life-changing results.

Role Purpose

This non-clinical role supports our aim in delivering community Pain Education and providing information to help people in the self-management of their chronic pain. Successful candidates will deliver a 2-hour online/in person Pain Education session to anyone who has had pain for 12 weeks or more, their family and wider social world. Successful candidates will work in pairs and are required for 3 hours per Pain Education session to allow time to prepare, complete administration tasks and collate service user feedback. Our organisation is committed to safe recruitment in line with the relevant legislation and guidance. Due to the nature of the role, successful applicants will be required to undertake a PVG check and will successfully complete Safeguarding, PREVENT Duty and Trauma online training. The cost of a PVG will be covered by Pain Concern.

What you would be doing

  • Attend training to deliver Pain Education sessions with materials developed
  • by the NHS.
  • · Adhere to Pain Concern’s policies including Safeguarding.
  • · Represent Pain Concern in professional manner
  • · Encourage peer to peer support and interaction.
  • · Signpost to NHS and Pain Concern’s suite of resources.

Role Description

  • Liaise between the administrator and Pain Concern on the ongoing running of the classes.
  • Collect and provide service-user feedback to Pain Concern.
  • Participate in on-going training and development.
  • Attend regular supervision sessions. ·
  • Complete any administrative tasks.


Is this role right for me?

We are looking for an individual who possesses some or all of the below experiences, skills and qualities.

  • Pain Management Programme graduate / lived personal experience.
  • Experience of implementing pain management strategies.
  • Excellent verbal communication skills.
  • Experience of using Zoom and Microsoft Teams, and administration relating to these.
  • Excellent planning, coordination, organisational and time management skills.
  • A flexible team player
  • Previous experience of coaching, facilitating and/or peer support would be advantageous but not essential.
  • Willingness to share personal experiences in an appropriate way and maintain clear boundaries
  • A stable internet connection.
  • A working understanding of IT and Microsoft office · A positive attitude, enthusiastic, patient and approachable


Availability and location

Contract type: Zero-hour contract
Times: Most sessions will be in the afternoon, advance notice will be given.
Rate of pay: £12 per hour
Location: Remote working from your own location

Benefits to you

  • Support from a dedicated line manager.
  • Access to an Employee Assistance programme.
  • Regular supervision sessions to support you in your role.
  • You will accrue paid annual leave for every hour worked.

How do I apply?

Applications closed 6 Match 2024.

Download and complete the application form and equal opportunities forms below and email it to Pain Concern HR, who can also answer any queries regarding the position.

Role description

Application Form   Equal Opportunities Form

Pain Matters Magazine

In 2021 Pain Concern marked the twenty fifth anniversary of the very first Pain Concern (UK) Lothian Group newsletter, later to become the Pain Matters magazine that we know today, by going back to where it all started – Astley Ainslie Hospital.

The Lothian Group was a patient support group set up by members of the Astley Ainslie Hospital pain management programme, so the issue was guest-edited by the Chronic Pain Management Service from NHS Lothian, based at the same hospital.

This issue’s theme was compassion focused therapy, with the team showing the different ways they use compassion as part of a holistic pain management approach. Below you’ll find an article from the edition.

At the time of writing the author Ruth Lewis was Specialist Physiotherapist in the Pain Management Team at NHS Lothian Chronic Pain Management Service.

The drive to be fitter

Many people with chronic pain would like to be fitter, to enjoy life more or to be able to distract themselves from their pain. Our biology ensures we feel good when we achieve; the chemical dopamine is released, and this gives us feelings of pleasure, energy and reward. The way this natural chemical works means that, once we experience these feelings, we crave doing so again. Our society values action, and sometimes it can feel like we are what we do.

This drive for activity can be hard to manage. If you push on and do too much, ignoring pain or fatigue, you tend to feel worse. If you focus too much on the way you are feeling, you may never get started. Low mood can really have an impact on motivation. Energy levels and other demands in life can also get in the way. For many people living with pain, becoming more active could be one of the most important and effective ways to improve quality of life.

Understanding is key

A helpful start can be to accept how understandable it is to struggle with activity. Pain, fatigue, fear and low mood do make it harder for anyone.

It is not your fault that you have pain, and trying to ‘just get on with it’ can feel really unhelpful. It goes without saying that activity can become more challenging in the presence of chronic pain.

12 practical steps to being more active

The next step might be to think about how you can help yourself become more active in the most effective and supportive way:

  1. Break down your goal into smaller and smaller steps
  2. If you start to feel frustrated or critical of your efforts, remember how understandable these feelings are
  3. What music, images or smells could motivate you?
  4. In your mind’s eye, imagine achieving a step towards your goal, think about this in as much detail as you can. What are all the good things that could happen?
  5. Think about writing down some motivating statements, such as ‘this is hard but I can do it’, ‘enjoyable activity is a powerful medicine’
  6. Try acting. Research has shown that adopting a confident posture and facial expression can help you feel more positive and motivated
  7. Practice a kind inner voice; try not to be hard on yourself
  8. Take time to think about what matters to you. What brings you a sense of pleasure and reward?
  9. Focus energy and commitment on what you can do rather than what you can’t. Write down as many ideas as you can
  10. Involve people you trust
  11. Think broadly about activity: singing, crafts, home improvements, studying, connecting with friends, reading or researching areas of interest
  12. Think broadly about exercise: dancing, cycling, Tai Chi, health walks, gardening, DIY. Search for the Chartered Society of Physiotherapy’s Love activity, Hate exercise campaign. Their website has lots of ideas and real people’s stories.

Pain Management programme feedback

Here are some responses from pain management programme graduates:

‘Walking at lunchtime was manageable, because I didn’t have a lot of time. Half an hour break meant I couldn’t push myself.’

‘I changed my mindset. If you don’t try anything different, you’re not going to get anything different.’

‘Knowing it’s safe to move helps.’

‘Muscles tense, and that brings on pain, so I am trying to slow down, relax.’

‘When you do breathing exercises and let everything go, it is easier to move.’

‘I started introducing things I was missing, things I enjoyed. I’ve been getting back to gardening; I’ve been walking the dog.’

‘I took some time off work, and I have never done that before for any reason – being kinder to myself.’

The Chronic Pain Couple, by Karra Eloff.
Review by Tim Atkinson

A portrait photo of Tim Atkinson.

Tim Atkinson is an author, freelance writer and Vice-Chairman of the British Pain Society Patient Voice Committee.


“No man is an island” wrote John Donne. To which we might add man, woman, and child. But for the chronic pain-sufferer, that fact can be as much a blessing and as a curse. We need people, but we don’t want to be needy. We’re all, to some extent, hide-the-pain-Harolds, taking Philip Larkin’s maxim – “Other people’s illnesses aren’t interesting: I mention mine only to excuse the probable dullness of what I shall write” – too much to heart. Because illness, and chronic pain in particular, can inevitably lead to strain in a relationship. Which is precisely where The Chronic Pain Couple by Karra Eloff (Exsile, July 2022) comes in. Drawing both on the latest research as well as her own experience (Eloff suffers from spondyloarthritis) Eloff has written a book that promises to put the joy back into relationships “embattled and exhausted” by one partner’s pain.

By taking a series of small, practical steps, she argues, you can turn the dial on a relationship, making big changes that require only minimal energy.

As Karra says herself, chronic pain can impact all areas of the lives of sufferers… and there are loads of resources out there to help them try to manage that. But chronic pain also impacts the relationships of pain sufferers, and there have been precious few resources devoted exclusively to that.

Until now. She knows from experience that pain can steal your day-to-day joy and force you to live for a future when you might start to feel ‘better’. But that day may be a long way off. Meanwhile, there are the daily needs of your relationship to consider. Identifying four key areas in which to apply simple, low-energy changes that can help maintain a positive and healthy relationship, she offers practical advice backed up with evidence and anecdotes that won’t use up too many of your valuable ‘spoons’.

And while all the strategies are simple, she is only too aware that ‘simple is hard when you’re focussed on survival.’ So the book makes it as easy as possible, including all sorts of pieces of the jigsaw (including mental health and sex) as well as a helpful summary – the ‘long and short’ – at the end of each chapter to reinforce what you’ve just read. And the key, when all’s said and done, is what Eloff calls ‘being intentional’. You might not be able to do everything you did before having chronic pain. But ‘pivot and reach’, she says – decide what’s important to you what you can do. And then plan to do it!

Zoe and Zak’s Pain Hacks by Dr Joshua Pate.
Review by Tim Atkinson

A portrait photo of Tim Atkinson.

Tim Atkinson is an author, freelance writer and Vice-Chairman of the British Pain Society Patient Voice Committee.


Contrary to the long-held (and, thankfully, long-discredited) notion that babies “can’t feel pain” we now know that, just like the rest of us, they can, and do. As do children. Estimates vary, but it’s sometimes thought that 15-30% children worldwide may suffer chronic pain. But all the books, support groups, therapeutic interventions and self-management strategies are geared to adults. Or they were, until now.

Because Zoe and Zak’s Pain Hacks, a series of five books by pain scientist, educator, clinician and father of three Dr Joshua Pate is the very definition of something you didn’t realise you needed until you see it. And then you wonder how you managed without it!

Written in rhyming couplets and with full-page, colour graphics and illustrations, the books are bright, engaging, educational and inspiring. Pain can be a drag and learning about it isn’t always much fun. But this series slays those dragons with aplomb. Quite honestly, it’s so good it’s even likely to be picked off the shelf by children who aren’t in chronic pain. My 8yo daughter certainly found it interesting enough to read the series cover-to-cover (and she’s not a pain-sufferer)!

And, like any good teacher, Pate knows precisely how to sugar the scientific pill, making the books accurate, informative and entertaining all at once.

They’re interactive too, with space at the end for the reader to respond to what they’ve learned, reflect on it, write down their own feelings about it and – in book five of the series – make their own action plan for overcoming pain.

And although it’s written specifically for kids, I can think of quite a few adults who would enjoy working their way through Zoe and Zak’s pain journey, not least (of course) any adult carers involved.

The Storylines involve Zoe Zoppins’ uncle who has an alarming accident, with a surprising outcome – not least the fact that they all learn that feeling pain does not necessarily mean your body is damaged (Book 1); in Book 2 Zoe visits her Grandma Lizzie’s science lab where a colourful experiment reveals something amazing about pain and the brain; then, in Book 3, Zoe, Zak, and their classmates explore the brain through a mind-blowing virtual reality experience; Zak Zoppins Trains his Brain (Book 4) explains how Zak is retraining his body and his brain with his action-packed action plan, and in Book 5 Zoe is ready to make an action plan of her own and we see all she has learned so far, not least that having an action-packed-action plan can be life-changing!

My only slight reservation is that, at 50 Euros a set (the books are not available separately) they are likely to make quite a dent in any UK school or library budget. But with the online activities and resources available on the companion website (https://www.zoeandzakspainhacks.com) they’re a bargain. Highly recommended!

Zoe and Zak’s Pain Hacks, by Dr Joshua Pate is published by NOIGroup (ISBN 978-0-9873426-2-1)

This edition of Airing Pain sheds light on the unique challenges of living with cancer as a child or young adult, and the later impacts of the cancer treatment they underwent during the critical formative years.

Airing Pain speaks to experts on the longitudinal impacts of cancer for these age groups; across medical, physical, and psychosocial.

Pain and fatigue are commonly reported as the most significant negative impact on quality of life when living with cancer. Until quite recently there has been little research in the area of living with cancer and experiencing medical treatments for cancer as a child or young adult during the critical formative years, and even less so on the long-term impacts these treatments can have throughout later adulthood.

Our contributors discuss a variety of determinants that impact long-term effects such as type of treatment, type of cancer, their personal resilience, and their family and social support networks. We also hear of the opportunities in improving cancer care for these age groups, particularly with the difficult transition from child to adult care units.


Contributors:

Emeritus Professor Sam Ahmedzai,  NIHR National Specialty Lead for Cancer – Supportive & Community Care

Professor Diana Greenfield, Senior Consultant Nurse at Sheffield Teaching Hospitals Trust

Ceinwen Giles, Co-CEO, Shine Cancer Support


Time Stamps:

0:50 Paul introducing Emeritus Professor Sam Ahmedzai, an internationally recognised pioneer in setting up palliative medicine. 2022 British Pain Society interview.

2:53 Discussion around later hormonal effects of some successful treatments used to eradicate and manage cancer in children and teenagers.

5:54 Professor Diana Greenfield, Senior Consultant Nurse at Sheffield Teaching Hospitals Trust, NHS, on the transition between paediatric to adult cancer care.

13:18 The importance of family-centred care. Defined as a house or unit of care that can be traditional or non-traditional but represents a holistic support network.

18:00 Ceinwen Giles, Co-CEO, Shine Cancer Support, working to provide support for people in their 20s 30s and 40s who have lived with cancer and chronic cancer.

19:00 Ceinwin Giles talking on her personal experience of receiving treatment for non-Hodgkin lymphoma and challenges in finding peers her own age who share her experiences.

21:54 Managing early-life considerations alongside cancer. Career uncertainty, mental health in jobs, as well as fertility, relationships, and dating.

23:00 The difficult transition from child to adult care, in terms of having fewer people and services supporting as an adult. There are opportunities to improve the easing of this transition, especially following the pandemic where services are stretched.

25:20 Invitation to respond to the Airing Pain survey.

26:02 Summary of the key take home messages for children and young adults, and those caring for them.


Thanks 

This edition of Airing Pain was possible thanks to support from the British Pain Society and has been funded by Brownlie Charitable Trust, Children’s Aid Scotland, Langmuir Family Foundation, The Stafford Trust, the White Top Foundation and WCH Trust for Children.


Additional Resources:

Airing Pain 140: Childhood Pain – Adverse Experiences and Parental Relationships

Shine Cancer Support

Families and Children Resource Page

Airing Pain 118: Pain Management in Young People

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