Miriam, Author at Pain ConcernPain Concern

Programme 140: Childhood Pain: Adverse Experiences and Parental Relationships

Paul Evans: This is Airing Pain. The program 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 care professionals who care for us. I’m Paul Evans, and in this the first of two editions of Airing Pain, focusing on issues faced by children and young adults. Today, I’ll be looking at how childhood experiences and relationships can impact on pain in the present, and in later life.

Katie Birnie: We want youth to see themselves as more than their pain, right? That’s so important. People are whole people. They have other interest activities.

Jen Ford: The joy of working in a lifespan service is that you can put people where they should be rather than the age that we feel they should be working in.

Lauren Heathcote: You know what’s it like when you’re a parent of a child who’s had cancer previously, and then they say, like, mum, I have this new headache and it’s not going away. And I don’t know what it means. And it’s scary.

Tim Hales: The most impactful aspect of what we’re doing will be to potentially provide scientific evidence that an individual who’s suffered from childhood trauma has a higher likelihood of developing chronic pain.

Evans: Adverse Childhood Experiences refer to some of the most intensive and frequently occurring sources of stress that children may suffer in early life. And according to the World Health Organization have lifelong consequences for a person’s health and well-being and can lead to chronic pain in later life. Such experiences include multiple types of abuse, neglect, violence between parents and caregivers, other kinds of serious household dysfunctions, such as alcohol and substance abuse, and peer, community, and collective violence. CAPE, that’s the Consortium Against Pain Inequality brings together people from a wide range of backgrounds to understand the impact of adverse child experiences on chronic pain and how people respond to treatment. Professor Tim Hales, a project lead with the consortium, is a non-clinical professor of anaesthesia at the University of Dundee.

Hales: These adverse experiences are conventionally divided up into three areas, so that would be abuse, neglect and household dysfunction. So, abuse is pretty clear I think, what that means. Sexual, physical abuse. Neglect, I think also that’s fairly clear. Household dysfunction might be a parent who’s incarcerated or is substance dependent or an alcoholic. So they are generally assessed largely retrospectively, but sometimes prospectively in childhood, and we use questionnaires to do that type of assessment and typically there would be about 10 different items that might be listed on that questionnaire. So we’re very interested in whether those questionnaires are adequate. Could we make them better? And are there links between those types of adversity in early life and chronic pain in adulthood. And if there are, what kind of mechanisms might store that memory?

Evans: Who are you interviewing? Is it the parent? Is it the adult who has been abused as a child? Where are you getting your research from?

Hales: We’re particularly interested in both ends of the spectrum, so we’re interested in adults. We’ve actually got a population of elderly adults, and we’ve asked them to recall their recollections of early life adversity or childhood adversity. We also have a cohort of juvenile idiopathic arthritis patients in London. They’re around 18 years old and so their experience is a little bit closer to hand. But still, that’s still retrospective, we’re not actually asking children to tell us about their current exposure to adversity.

Evans: But for the 18 year olds, I mean that’s still very, very close to what is going on at home or anywhere else for that matter. How do you approach those difficult questions?

Hales: That’s a very good question. So, in that group of individuals, we have them fill out a questionnaire with a researcher present who has a good understanding about where they could be referred if they have any issues that might arise from talking about those experiences. We have a list of resources of places where individuals who’ve suffered from adversity in early life and maybe have problems addressing those issues where they can go to talk to and receive help. And, of course we can also refer them to their GP or their consultant. In this case, these patients are all currently receiving care from University College London Hospital. That’s one aspect of the project, but we’re also looking in the other age spectrum at the elderly cohort that we’re studying in Edinburgh, which is called the Lothian birth cohort of 1936. So, these individuals are in their 80s, as you can probably tell from the name of the cohort, and we’re asking them to recall adversity in early life and looking at their responses to our pain questionnaire.

Evans: What are their memories of what went on and how it affected them.

Hales: Yes, it’s a very interesting question because back in the 30s things were quite different from the way they are now obviously. And when we’ve looked at the questionnaire responses, some of the participants in the Lothian Birth Cohort study indicated that life was so different then, that it’s hard to look back at it in the context of adverse childhood experiences, because in those days, you know, physical punishment was something that wasn’t considered extraordinary by any means. So, that does raise an interesting question. And I think one of the things that we’ll find out from the study is how many people from that generation report exposure to adverse childhood experiences? It might be that the numbers will be much lower because people don’t consider some of the things that we might now consider to be an adverse experience to have been adverse in their day. So that would be very interesting to find out. There’s not simply the link with chronic pain, but also those more fundamental questions about people’s attitudes.

Evans: And of course they were the war years.

Hales: Yeah, we actually selected the questionnaire specifically, so it would include issues around war like displacement. It’s like peeling an onion in a way you you don’t know where to draw the line with questions because racism is a legitimate concern, obviously, and should probably also be an adverse childhood experience, sustained exposure to racism is obviously, very stressful. So there’s a question about how the questionnaire should be designed and that’s one of the things we’re trying to tackle as well.

Evans: That’s Professor Tim Hales project lead of the Consortium Against Pain Inequality. So what could be going on with these adverse experiences in childhood that feed through to chronic pain in adulthood? Lesley Colvin is professor of pain medicine at the University of Dundee, she’s also a project lead of CAPE.

Lesley Colvin: There’s increasing evidence that adverse quality experience have long term impacts on the neurobiology of the pain systems, and we know that there are changes in the stress response. There are changes at structural and functional level within the brain that potentially may predispose you to developing chronic pain in adulthood, and indeed it’s not just chronic pain, there’s a link with many other physical and mental health co-morbidities such as depression, cardiovascular disease.

There’s also some recent work actually published in this week’s British Medical Journal, which shows an increased mortality associated with childhood abuse, and that’s a large scale study, I think of about 70,000 nurses and looking at experiences in early childhood and adolescence. And there’s a clear increase in behaviours associated with increased health risks, so smoking low levels of physical activity are two of them and an increased mortality, particularly mortality related to injury and poisoning, respiratory disease, possibly secondary to smoking. Also, cardiovascular disease and digestive disorders. So you know, we need to take a kind that actually unless you intervene early and identify as a problem, you’re not going to either understand the mechanisms to reduce the impact, and going forward, how can we prevent it.

Evans: Now I can understand some of the things you just mentioned. Smoking, obesity, lack of exercise. But chronic pain, though, how are they linked?

Colvin: So in terms of the mechanisms, there are some interesting links. So if you look at brain imaging studies, there are clear effects of adverse childhood experience in brain imaging responses in adulthood, and the bits of the system that are affected, this bit, the kind of broader bit of the system, the corticolimbic system, which is also the bit that if you do functional brain imaging and you scan for chronic pain. But so that’s the same system light up and also interestingly similarly with depression. But actually, as a working clinician, you can’t work in a pain service and not make that link when you see the patients that are coming through the service, you’re taking a full biopsychosocial history that adverse childhood experience is so commonly there. So it’s that predisposing factor. But one of the things I think it’s important to understand is. So not everyone who’s adverse childhood experience will go on to develop chronic pain. So maybe there’s something to be gained by studying individuals who have had adverse childhood experiences who don’t go on to develop chronic pain because then you can start to understand what factors, what mechanisms mediate resilience. And can you build on those and there was an interesting paper published this week actually, which is not looking at chronic pain, but it’s looking at substance use disorder and adverse childhood experience. And that’s a mixture of looking at some biomarkers and also neuroimaging and what they found was that individuals with adverse childhood experience who don’t go on to develop substance use disorders have higher baseline levels of endocannabinoids, particularly [unintelligible], and actually when they’re asked to do a task, a stress related task. The levels remain higher, so there’s something protective about that, and also when you did the neuro imaging work in that there was decreased connectivity between some areas of the brain that are involved in emotional processing. If as a clinician you are assessing a patient in front of your clinic, how many of us actually ask about adverse childhood experience and if we do ask, how do we ask about it? And that’s attention because you’ve got a lot of information and there’s a lot to do in an appointment that is of necessity time limited. And the last thing you want to do is to ask an individual do it in such a way that it causes additional trauma to them. So awareness and knowledge and support in terms of training as to how to manage that, and deliver that kind of trauma informed care is really important.

Evans: So how do you manage that?

Colvin: One of the things is you know, building the rapport, being in a safe space and doing it in a sensitive way and allowing the patient that you are interviewing to disclose or not, as they feel able to, and if they do disclose, then making sure that there is appropriate support available. There are charities like well be in Scotland that will provide support, you don’t need to be referred, they can refer themselves, but also being aware that there’s limitations at the moment, in terms of the services that are available, so there’s a conversation to be had with policymakers going forward so that we can address that. Perhaps we should be providing education around about the time where women have contact with the maternal services, because that’s a time where you know you’re having a baby, you almost inevitably have contact with services, and that’s also a time where education about adverse childhood experience its impact and how to get support for that actually might have significant impact. So maybe working with community groups, health visitors, NCT, range of organisations. There’s not one single simple solution, but I think there are approaches that we can use that will make a difference.

Evans: Professor Lesley Colvin, Professor Tim Hales, again.

Hales: We don’t know currently which particular experiences might be most detrimental. There are studies that have been published that already suggest that there’s a link between early life adversity, so adverse childhood experiences and pain in later life. But currently we’re not aware of which adversities in early life might be most influential. We’re also very interested in the possibility that there might be a memory of those adversities that stored somehow in the body that may alter the way that people respond later in life, even though those events might be many, many years before they experience their poor health outcomes, there’s a large body of literature that demonstrates associations between adverse childhood experiences and poor health in general, particularly mental health. There’s an emerging understanding that that probably also extends to chronic pain. One of our main aims is to try and establish whether we can find evidence for that. That’s the first thing. But also look at the potential causal factors or mediating factors that might store a memory of that. And so our hypothesis is that it’s through an epigenetic mechanism. Which is a change in DNA structure that might be caused by chronic stress in early life, that then gives rise to a change in the way our cells behave later in life that’s physically different from those people who haven’t been exposed to chronic stress in early life.

Evans: See none of that surprises me. What does surprise me with what you’re saying is that there is or could be a change in the DNA.

Hales: So this is a process called DNA Methylation. Without going into the biochemistry of the process, it’s a common process that goes on in all of us that enables us to adapt to different environmental situations. There are a number of environmental stresses that can cause DNA Methylation, smoking being one, perhaps the most famous one, and you can actually use these patterns of DNA Methylation to estimate somebody’s age. And in those people who’ve had exposure to a lot of environmental stresses, they’ll have an older Methylation age or DNA Methylation age. It’s becoming a very interesting area of science. We’re particularly interested to see if that area can be extended to understanding chronic pain and the impacts of what happens in early life. There is another area that I think is particularly interesting and that is how people respond to analgesic drugs. So pain killing drugs and whether that also might be influenced by exposure to adversity in early life, some of these pain killing drugs are very strong narcotic drugs like opioids and there’s quite a large literature demonstrating associations, very strong associations between exposure to adverse childhood experiences and problem effects or detrimental effects of opioids, including dependence and addiction. So it may be that in some individuals treatment with opioids might not be appropriate if those links turn out to be true in individuals who also have chronic pain.

Evans: Professor Tim Hales, well, we’ve been dwelling on adverse childhood experiences, but in for want of a better word, a normal family, how to parents mindsets affect the child with chronic pain. Lauren Heathcote is a senior lecturer in health psychology at King’s College London. She studies the psychology of pain and symptom perception, primarily in young people.

Lauren Heathcote: We tend to use the word mindset to mean a core assumption about the way things work in the world, and some of this work stems from Carol Dweck’s work on growth mindsets versus fixed mindsets, about intelligence. I worked at Stanford with Alia Crum, who studied mindsets about stress. Do we think that stress is something that makes us sick and weak and is debilitating or something that makes us learn and grow and makes us stronger? Mindsets about the body do you view the body as something that’s capable of managing and handling and coping with pain? And is your body responsive, able to heal? And is your body working with you or against you?

Evans: I’m sort of trying to go through my own memory of what my mindset, what my parents mindset might have been that illness was something that you fight through, no such thing as illness. Get up and go to School.

Heathcote: That’s a really powerful mindset or belief about illness, something that is to be pushed through, I think that relates to the idea that illness can be managed, that mindset, that illness is something that’s manageable. You have control over and I do think that, yeah, that the way that our parents respond to things like when we have an illness or we have an ache or pain and that has to shape the way that we view and the mindsets that we have about things like illness or what our body is capable of.

Evans: In that scenario, maybe that mindset was correct, or maybe it wasn’t correct. Or maybe it was a little bit correct. Go to school if you’re still feeling ill at lunchtime. Come home and of course you never did. So perhaps it worked.

Heathcote: Yeah, I think that’s such an important point that the way we think about mindsets is that they’re never correct or incorrect. What they are is lenses through which we view the complex world, and but there they have meaning and they have power because they shape our behaviour and our emotions and the work that Alia Crum has done on mindsets, about stress, I think is a great example of that because stress can be both debilitating. It can make us sick and weak, and there’s great research showing that over the long term, it predicts morbidity and mortality, and there’s great science showing that stress helps us learn and grow and meet our goals and makes us stronger. And so our mindsets, they help us make sense of the complexity of the world, rather than necessarily being true or false.

Evans: Having said that, how do we as parents alter our own mindsets?

Heathcote: Yeah, I think what you just said is important as an important starting point is to recognise that the mindset that you have as a parent might naturally flow onto the child. So there’s an active component there. You know, how do I change my mindset so that’s imparted better to my child and the first step is really just recognizing that you have that mindset and that the mindset is coming out through your behaviours and your emotional responses and things like that.

Evans: I think what many people with chronic pain would say is they don’t understand me. My mother doesn’t understand me and I guess it’s very important for the child to know how to react to that to mum doesn’t understand me. Dad doesn’t understand what I’m going through.

Heathcote: Yeah. I mean, I think that the validation piece is incredibly important. There’s no point talking about changing mindset if you feel invalidated in some way, and that in and of itself can be an invalidating experience. You know, just change your mindset. The tricky thing about pain is that it can feel quite lonely, and it shapes the way you view your body in relation to other people’s bodies. So, you know, I think my body is something that’s letting me down. It’s not working the way it’s supposed to. Doesn’t work like other people’s bodies work, and that can be quite an alienating experience. So I agree that being understood and being heard is a really important starting point as well.

Evans: When you work with children and parents, how do you approach it?

Heathcote: How I approach it from a research perspective, we always try to start with the patient voice, so I’ve I have a a whole research line in the experience of pain in childhood, cancer survivors and young adult cancer survivors, and there it was really important that we started with qualitative work to really understand what the pain experiences like for these children and for their parents. You know what’s it like when you’re a parent of a child who’s had cancer previously, and then they say, like Mum, I have this new headache and it’s not going away. And I don’t know what it means, and it’s scary, and what are the words they use to describe that experience? So yeah, from a research perspective, starting with the patient experience is really important, and then building our research questions from there.

Evans: So, what were the questions to the parents then?

Heathcote: Well, firstly, we start with the validation and that’s important piece of when we do qualitative research. You know these are hard questions. So, I think acknowledging upfront that it must be really scary when your child says I have this pain and it’s not going away and I don’t know what to make of it, and then really asking them, you know, what does that bring up for you? What are the emotions that you have? What are the first things that come to your mind when your child says I have a headache? Normally what we hear parents say is, was terrifying because my child had this illness before, and now I’m really worried about them having that again. And I want to you know, be protective and be helpful, but they also don’t want to over worry about every single ache and pain that their child has. So, we asked them things like how do you manage, worry about pain and your response and manage that sort of anxious response that you have and they tell us all these wonderful things about strategies they have.

Evans: How do you feel when you know that work you have done is actually helping people?

Heathcote: That’s the best bit and I see it indirectly through clinicians who say things like, I’m speaking to my patients differently now about their pain or about their symptoms and that’s just the most rewarding part of it all. Yeah, it’s the best bit.

Evans: Lauren Heathcote of Kings College, London, well depending on your viewpoint, children and adults can seem like two very different species, but how far apart are they really? Jen Ford is a physiotherapist in the Bristol Paediatric Pain Clinic, and she’s therapy lead at the Bath Centre for Pain Services, which is a national service for people of all ages.

Jen Ford: Sometimes people wonder, you know, if I work with adults, how can I possibly work with children or vice versa? My own experience is that, you know, children aren’t small adults, and we should be working with them differently. But I certainly feel like the fact that we work with all ages has really opened up how creative we are in sessions. I can give an example of a gentleman I worked with who was an ex-military person who he sort of described a turning point in his treatment was when we got out the colouring pens and asked him to draw a sort of physicalisation of his thoughts and emotions, a metaphor passengers on my bus and before I worked with two, and I probably wouldn’t have reached for the pens as frequently as I do, or thought about being a bit more creative in how I work with people, there’s a lot to be learnt from working with different age groups. One of the most interesting things is working with young adults, sort of our 18 to 30 patients with quite a broad age, because often we’ll see 18, 19 year olds who are still living at home and are better treated as adolescents. Maybe that’s where they are developmentally, whereas you know you might see a, a 16 year old who’s living independently and you know, thinking about how to manage their future. So it’s quite a broad thing and I think the joy of working in a life span service is that you can put people where they should be rather than the age that we feel they should be working in.

Evans: You told that story about picking up the crayons with the elderly gentleman that you learned from working with children. So is there something you’ve learned from working with elderly people, or it’s just called us adults, that you can transfer?

Ford: Absolutely, and so much and I think they talk about their life experiences and how they’ve kind of managed with different conditions, and I think that can be so helpful and so useful for our younger patients as well. You know, we can learn from any age group for me just being a lot more open in my approach and finding out what interests the patient rather than making assumptions about what they’re going to want to do, you can have any age group. Maybe there’s an older adult who wants to connect better with their grandchildren and actually ohh I can talk to you about what I do with kids that age and you know it can open up some really interesting conversations and then we end up doing some very different activities, perhaps to what they or I expected.

Evans: That’s Jen Ford therapy lead at the bath Centre for Pain Services, so maybe children and adults aren’t as alien to each other as I at least thought. Doctor Katie Birnie is a clinical psychologist and assistant professor at the University of Calgary in Canada. In 2022, she was speaking to delegates at the British Pain Society annual scientific meeting about patients, children in her case, and family partnerships.

Birnie: What it means when I say patient partnership too is that we’re working with youth, whether it’s children, young adults who have their own experience with pain, their family members as equal members of our team. So they’re working with us to help identify what questions do we need to be asking and answering about pain during childhood. How do we need to go about answering those questions and how do we need to share about what we learn? We looked at all of the studies, all of the reviews of all the science, for any intervention for chronic pain in kids and said, what do we know? How good is this evidence and where are there gaps? And one of the things that we identified is, at least in the context of pain in childhood, the most amount of evidence. If we look at drugs, medications, psychological interventions, physical interventions, other nutritional diet or other interventions. The best quality evidence, and the most evidence we have are actually for psychological treatment, and that’s a piece that not everyone can access. That’s a whole shift, right? Often people think primarily about seeking medications and a multimodal approach is certainly really important. But psychological interventions are a key piece to supporting youth to function well, to live well and hopefully have pain that stops.

Evans: That may be a battle from the very start for the parents, because drugs make you better. Why should I go and see a mind doctor, a psychologist and not a Doctor who will give me drugs?

Birnie: It’s a great question and I think when I talk back to that project where we had youth and parents and healthcare professionals tell us their priorities for chronic pain, the number one most common response we got from that was that youth had been invalidated about their pain experience from healthcare professionals, family members, teachers, coaches, peers, siblings, you name it. It’s really common to have your chronic pain experience invalidated and in part, that’s because pain is invisible, right? So it makes sense that people are hesitant to talk to a psychologist in the context of chronic pain, because they’ve often been told that phrase. It’s all in your head, as if to say it’s not real, and the reality is, and I always start this as a psychologist, your pain is very real and the neurophysiology of how the body works backs that up, right, you know. But it backs up that. Your thoughts, your feelings, your emotions, your expectations have a huge impact on your pain experience, and those are things that a drug can’t target. And so we need to also be looking at how do we add in, how do we address, how do we target all of those other aspects of pain experience that are really critical to getting back to functioning and moving forward with chronic pain.

Evans: We’re talking about young people, adolescent children, a very important part of child life is the family, the parents. Everybody has to be in on this. How do you help them help their children?

Birnie: We are talking about partnering with parents and youth in research and healthcare, how we design our health programs and parents are key to that. So we also spend time in my work talking to them about what do you think is needed, what is missing in terms of you know how our health system is designed or how our pain care is designed. Or how our interventions to support families, you know, what are your thoughts about how we can improve that? And one of the key things that’s also come from that is how do we address parents who have chronic pain and what supports do they need and do they have in order to then be able to best support their kids with chronic pain or ideally even prevent chronic pain in kids before it starts?

Evans: A parent with chronic pain might have had chronic pain right through their child’s life. Psychologically, they could be affected by I didn’t have enough involvement in that child’s life, and what do I tell my child about my pain? How do I put it over there I have had invisible pain that is affecting our lives.

Birnie: Yeah, I think it makes a difference how you talk about it in a family for sure, and I think what we know from some great research is that kids learn by watching, right. They may not be saying to their parents. I’m doing everything you’re doing, but they certainly pay attention to the behaviours they observe. We call that social modelling. You know how parents are managing their own pain if they have it makes a huge difference for what kids learn about pain and how to cope with pain. So often in those situations, encouraging parents to be using good coping strategies for pain management as well, and we’ve actually run some groups where we’ve provided psychological interventions for adults who are also parents with chronic pain at the same time that we’re offering psychological interventions to their kids who might be dealing with chronic pain, and seeing some really interesting feedback from families about what it’s like to learn about good pain management skills at the same time and how that shifted some of the conversation within the family to focus more on, you know, kids being able to say, hey, mom, I see your in pain. I learned that I need to take some deep breaths or I need to manage it this way. Let’s do that together where you this is what you need to do, and that’s going to help you through this moment. So I think when we can shift some of the conversations that happen about pain and families, and the behaviours that are associated with that.

Evans: But adults in pain, parents with pain, don’t get to see you should they?

Birnie: Great question. I mean, you’re right, not everyone can access that. Not everyone needs to either, right? I think that’s also really important to recognize. But I think parents can do this in small ways. They don’t necessarily have to meet with a psychologist, right? If you’re doing things like, you know, gardening or tours around the house or activities that you love, you know, going out for a walk, you know, you can talk about those things. You can share those things. You know, I’m having a bad pain day and here’s how I’m coping with it. You don’t need to meet with a psychologist to be able to do that, but really focusing on the things that are helping you to cope well and function well in your life will be beneficial for your kids to hear.

Evans: It could be that not hiding your pain is fairly pertinent to that situation.

Birnie: Yeah, I think it depends how you show it, right? I think there are ways we can show pain that can be unhelpful, whereas there are ways that we can show we’re dealing with pain in more helpful adaptive ways, and I think being able to show the ways we’re dealing with pain in adaptive ways, helpful ways where we’re still able to function and engage in life are really powerful. If all your child sees are challenges, difficulty functioning, difficulty engaging in day-to-day life. I think that can make it hard, especially if they the child has pain themselves. I can have pain and still get out and engage in in daily life.

Evans: That’s doctor Katie Birnie, clinical psychologist and assistant professor at the University of Calgary in Canada. In every addition 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.

Evans: 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, and to know what we’re doing well or maybe not so well. So do please leave your comments or ratings on whichever platform you’re listening to this on. Or, of course, the Pain Concern website, which is www.painconcern.org.uk. This will help us develop and plan future editions of Airing Pain. Pain is sometimes described as the unwelcome guest in the house and no one invited it in, but the whole family has to learn to live with it. Last words in this edition of Airing Pain to Katie Birnie.

Birnie: When we talk to youth living with pain and their families about this, the example that’s often shared is how you know a child may talk about their pain, or parents may ask a lot about their child’s pain at the end of the day, and then that can drive the whole conversation that evening. The whole conversation over the evening, the dinner table can become about the child’s pain, and actually we were talking earlier about identity and teenagers developing their identity. We want youth to see themselves as more than their pain, right. That’s so important. People are whole people. They have other interests, activities, joyful parts about who they are as well. And so if we shift and say we’re going to talk about pain for this period of time, but we contain that, and that instead of me as a parent asking my child about their pain instead, maybe I ask one question about that. But I also asked how was your school day? What are you interested in today? You know, did you speak with any of your friends? What would you like to do on the weekend? We talked about all these other things that are part of life doesn’t mean pain is not there. But it shifts the focus. The focus is not on pain and our life as a family or as a, as an individual, being defined by pain. Pain is a part, but it’s not the whole. And I think that’s really important for all of us, but particularly for families.

Evans: This edition of Airing Pain was supported with funding from Brownlie Charitable Trust, Children’s Aid Scotland, Langmuir Family Foundation, The Stafford Trust, the White Top Foundation and WCH Trust for Children.

End

Transcribed by Owen Elias

A group of cyclists and their supporters stand together, with a tower and the sea beyond — Niki Jones and Lee Vaughan (left, second from left), Trustee Richard Pell (centre) and their supporters.

In September 2023 two fundraisers with lived experience of pain undertook an epic 173 mile ride from one side of the UK to the other, with the aim of highlighting the silent epidemic of persistent pain in this country.

We caught up with Lee Vaughan (49), a Duty Manager at a local Leisure Centre from Sheffield and Niki Jones (52) from Brecon in Wales who is a Pain and Wellbeing Coach, Community Shop Assistant, Patient Partner for several research projects and Vice Chair of the Footsteps Festival to find out about their experience.

Tell us about the challenge – what was the idea and how did it come about?

Lee: The idea came about following the Flippin’ Pain Community Outreach Tour in May 2022. The Lived Experienced riders benefitted so much from the experience of the peer to peer support, that we wished to build upon it and make the event the start of something rather than a one off.

Niki This was born from the Flippin’ Pain Outreach Tour – which includes a peloton of pain experts who ride from place to place on the Tour – I participated in the Lincolnshire Tour of 2021 and most of the Teesside Tour in 2023. On the latter tour there was a larger group of people with lived experience of pain and we wanted to keep the momentum and the peer support – the idea was born!

What motivated you to participate in this charity bike ride?

Lee: The motivation was to use the challenge to raise awareness of persistent pain, raise important funds for Pain Concern, but also to challenge ourselves to something that would once have been deemed incomprehensible and impossible. I was once told by a GP that cycling would not be a suitable activity for me because of my back pain. Learning to understand pain in general, and most importantly my pain, has been the key to changing my life and using the limited energy I do have to engage in activities that are value driven and self fulfilling has been crucial.

The natural reaction to pain and fatigue is to stop. This challenge was about giving people hope. To demonstrate that the boundaries we are often set are there to be nudged, and that with self-compassion, increased understanding of pain and great peer to peer support, boundaries can be explored with care and nudged with mindful caution. We can live well with pain when we begin to understand that ‘Everything Matters when it comes to Pain’ (Flippin Pain)

Niki: Cycling has become an important part of my life and wellbeing – but I don’t have anyone else to ride with, which is usually fine, but my motivation can lapse at times – having a big challenge to aim for and train for gives me the impetus to get training and riding. However, more importantly, raising awareness about the large numbers of people who live with pain and knowing the lack of understanding and support they face, I find it so vital to keep showing people that there is hope, that there are more avenues of support than many are aware of, and that things can change for the better.

Have you participated in any other charity rides or cycling events before?

Lee: Before February 2023 I had not cycled since I was 16yrs old, around 33yrs. As pain slowly took over my life I was advised it wasn’t a suitable activity. I have never taken part in charity bike rides or events like this before this year.

The thought of simply sitting on a bike, the rigidity of the riding experience, the danger of the roads and aggression towards cyclists today, the fear of the big hills that exist in Sheffield and the possibility of riding somewhere and becoming stranded if my pain became too much were very hard to overcome. Signing up for the Flippin Pain Peloton back in February, whilst going through a two month flare was an act of impulse. I don’t know why I did it, my wife sat in horror at the thought, but that moment changed the course of my year, my journey with my pain, and ultimately my life. With a value driven goal I discovered my motivation again. I discovered that giving myself something so incredibly meaningful, despite being monumentally daunting, began to ease my pain experiences – even before I’d sat on a bike.

Niki: I was never a cyclist as a kid – bikes have always been transport, nothing else, and usually a pretty last port of call transport. However, in 2020 I was introduced to e-bikes on a course – and when Lockdown happened, I got an old bike out of a shed and started going out, 5km to start and then more and more. At the time I was struggling with a very gnarly opioid taper as well as a spicy nervous system – I videoed my experiences in a vlog, how I learned to cycle, to work within my boundaries and progress carefully. The mindfulness aspect was very important and the sheer joy I started to be able to access at a very hard time in my life. In many ways cycling saved me.

I was asked on the 2021 Flippin’ Pain Outreach Tour which was my first experience of a group charity ride and it was honestly one of the best experiences of my life. I was so happy to return in 2023 even though my fitness levels were not so good.

How did you train for this ride? Can you share some of your training routines?

Lee: With a new understanding of my pain and myself, I began training in a way that was absorbed in self-care. I didn’t even contemplate riding outdoors for the first 6 weeks. I started gently by allowing my body and mind to have the experience of being on a bike in a completely safe environment. Using the stationary bikes in the gym was my starting point, and I began by gently riding for 45 minutes. I instantly found that during that 45 minutes my pain became insignificant in that moment, and that my body did not seem to react in the way I expected it to, in the way I was told it would. I spent 6 weeks in the gym slowly increasing my time in the saddle and slowly monitoring my development. I began to lose weight, feel good about myself again, and I began to look forward to the next session.

Transitioning to a real bike was terrifying. A friend loaned me a bike and in early April I planned my first experience back on the roads. Everything went wrong. The chain came off dozens of times, I couldn’t remember how to work the gears, the first hill nearly burst my lungs. However, I ensured that my first trip was only one way and my family were waiting at the destination. I removed one of my fears. I also ensured the terrain was reasonably flat, although that’s very difficult in a city built on seven hills.

The experience made me want to explore my boundaries. Over time I learned to ride the bike efficiently and I began to fear much less, apart from hills. Training was centred around rest periods. Any body needs recover time. I slowly learned to make the rides a journey, a mindful experience. Stopping to take pictures, make videos, allowed me to pace but also take in the world around me and allow it to help me.

After the Peloton in May, I kept going. I signed up for the Cyclone Tour (65 miles) and the London to Brighton Ride (55 miles). However, in the two weeks leading up to this challenge I flared. This was the hardest part of all.

Niki: All my training rides are documented in my training Vlogs which can be seen on YouTube. I knew I had to be fitter than I was, so training was vital – but also that riding in a group was a different experience than alone – and that I tend to push more on my own. I aimed to be comfortable cycling 50km before I went – but I also commuted to work on my bike, which although it was only 3km each way, still had an impact on my fitness level as I pushed harder each time. I live in Bannau Brycheiniog so no lack of big hills to train on! I interspersed my training rides with yoga and I walk a lot every day as I have horses to care for. I was systematic and committed – “present day Niki” talked a lot to future “Coast to Coast Niki” as a way to motivate myself!

What challenges did you come across during the ride? What did you do to overcome them?

Lee: I think the biggest challenge was always going to be fear. Niki and myself had many chats supporting each other before the event, managing our fears and our

event, managing our fears and our expectations. In a sense a lot of the psychological work was done beforehand.

‘I am in awe of the resolve and enthusiasm of Lee and Niki to push the agenda for a better understanding and better outcomes for people affected by chronic pain. Like others, pain has robbed them of so much, but they are now able to balance self-care with living full, active lives. Their recent successful coast to coast ride was a generous and much needed fund-raising boost for us at Pain Concern, but more than that it was an inspiring example of what some people are able to achieve despite pain. Not everyone with chronic pain will aspire to cycle the width of the country, but I hope everyone can find inspiration in what Lee and Niki have achieved and channel it towards something they want to do.’
Richard Pell, Pain Concern

Coast to Coast – Peddling for Pain Concern

On the ride there was always the challenge of self-care. We needed to be constantly listening to our bodies, and pacing was a huge factor in this. It wasn’t a race, it was an experience. It was also important to work as a team as we all had moments where we needed support.

Personally, I experienced a new pain. From mid-afternoon on the first day, I suffered terrible sharp pains on the outside of my left knee. At some points I was simply carrying my left leg and peddling only with my right. There were some really tough moments for me. The team were amazing. When I dropped back from them all, they knew what I was doing and why, they knew I had to be allowed to find my way through. Occasionally they would drop back and check in with my, keep me supported and offer encouragement.

I used breathing practices, body scanning and self-affirmations to calm the situation and manage the discomfort. The pain came and went over the three days, and has been pretty much non-existent since I finished. The other obstacle was the fatigue. It was exhausting and also exhilarating – all of which drains the body and mind. We rode as a team, we supported as a team, and we conquered as a Team.

Niki: The biggest challenge was always going to be mental – cycling is as much a headgame as it is physical – much as living with persistent pain is. Reducing fear of the distance, the challenge and having the confidence I could complete needed a lot of psychological work in the months beforehand and during the ride. It was easier during the ride as we all had each other to support – showing the huge impact of peer support. But knowing when you needed a pep talk and when someone else did was an intrinsic part of this. Allowing others to support you is not always easy, but a shared goal makes this easier.

Did you have any personal goals for this ride? If so, what and were they achieved?

Lee: The goal was to get from A to B. It didn’t really matter how. If we walked that was OK, if we needed extended rest that was OK, If we needed to ride within ourselves that was OK. If we used our knowledge of pacing we were always going to make it.

Making this a memorable and positive experience was most important. There is hope and we all can achieve. We can set and also nudge our boundaries and expectations, not society. We are brave and courageous people because we awake each day and face our difficulties. However, our bravery can also be our downfall. To complete this challenge was the ultimate test of self-management skills, and of peer to peer support.

Niki: My goal was to complete of course – but it was also to have the courage to stop if I did need to as well. Sometimes we push ourselves too much, through fear of failure, of over commitment. While this was to be a big physical and mental challenge, I did not want to stress my body so much that I felt “broken” afterwards. Living with persistent pain means we sometimes have to make different and hard choices, and it’s not always easy knowing where or when to make them – we need to push boundaries, but with care and support.

Completing the ride – 144 miles – feels amazing, but I’m immensely proud of myself for pacing my activity and making the right choices to ensure that I was able too. I chose to walk up some of the hills – my bike’s gears are not that great for climbing (use the tools you have!) but when going up Hartside I knew the last mile or so was on a main road and I didn’t want to walk that – so I paced myself up the off-road sections by walking at times, which ensured I had the energy to ride the main road section without exhaustion.

What were the highlights of the challenge?

Lee: This is such a difficult question because the whole thing was an amazing experience. The highlights were the people that rode, the friendship, the support network and the sheer strength of character shown by the group. A personal highlight for me was climbing Hartside. A 1903ft climb spanning a distance of 4.3 miles.

The agreement was that we climbed hills our way and regroup at the top. On this particular hill I established a rhythm, a 4 beat count. It was almost musical in format, but it was designed to managed the peddle stroke and to also manage my breathing. I had worked on it in training to lessen my fear of hills. I never looked for the summit, I looked for the next peddle stroke, I rode within myself and maintained my rhythm, my cadence, my breathing – I was pacing myself mindfully.

It was exhilarating, as I astonished myself with what I was doing. I was riding up a huge hill, but I was using self management strategies to ease fears and manage physical output. I felt like I was leading the Tour de France, it was an incredibly emotional part of the journey and for the first time in a long time I genuinely felt proud of myself.

At the summit I sat alone for around 10 minutes in amazement of not only what I had achieved but also at the stunning scenery. At that moment I struck up a brief conversation with the 10yr old me. The little boy who lost his dad and spent his life punishing himself from there on. The little boy who grew up with no confidence and deeply afraid of the world and his future. The little boy who’s grief and fears still drive my pain today. For a brief moment I also looked to the sky, ‘look at me dad, look at me now – that was for both of us’. I haven’t shared this before, and I didn’t talk about it at the time. But, in writing this, it now feels right to share it.

Niki: It was all a highlight! But the thing that really sticks out to me was the pride I felt in all our group – each met and overcame so many different challenges in that time, and all with grace, kindness and compassion. Truly a group of fantastic people.

Is it too late to support the cause you’re riding for?

Lee: It’s not too late at all. We are leaving the page open for a while yet. We targeted £1000, and we are nearing £2,000. We hope the publicity around the challenge will keep the support coming.

Niki: Thank you SO much to everyone who has supported us in raising so much more than we hoped – we are so grateful.

Do you have a message for other riders or anyone thinking about participating in a charity ride in the future?

Lee: Niki and myself have spoken for long periods about how cycling is such a brilliant metaphor for self-management. Everyday we face hills, but they can all be climbed. As long as we climb with self-care and self-compassion; as long as we climb at our own pace and stick to our own rhythm, never looking for the summit just looking for the next step or peddle stroke; take rests along the way, it’s OK, it’s part of the strategy, life is not a race it’s a journey. The summit will come as long as we keep moving forwards at a pace that is kind.

At the summit look back and take time to reflect on the achievement, look at what you did, and remember how you did it. Remember this for next time. On the descent is where the greatest care is needed. We are feeling good, but we must not push. We must cover the brakes constantly and not lose focus of self-care, for the next hill will come around the corner based on how you descend and how you manage the plateau. Take great care at the top and going downhill as this part of the ride will dictate how many hills you face and how big they become.

Niki: To me, these rides have been so important – on so many levels. One thing that stands out to me is how it’s given me confidence in my body – and my mind. When you live with persistent pain, your relationship with both can become complex – when your body hurts you can come to resent or fear it. Being able to do something so physical and mental and succeed has really changed my relationship with my body and I am so very grateful for that. For 16 years I could barely walk a mile, in the last 5 years I have worked hard to change that and I am daily amazed and grateful that I can do this.

While I understand that 144 miles might seem daunting, I’d offer the thought that challenges are individual – and equally important and to be celebrated. One person’s front gate might be another’s Everest – equal courage, equal celebration, equal worth.

Feeling inspired?

First broadcast 4 October 2023

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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.

Dyma Airing Pain, rhaglen a gyflwynwyd i chi gan Pain Concern, yr elusen yn y deyrnas unedig sy’n darparu gwybodaeth a chefnogaeth i’r rhai ohonom sy’n byw gyda phoen, ein teulu a’n cefnogwyr, a’r iechyd gweithwyr proffesiynol sy’n gofalu amdanom.

Enw i yw Paul Evans.

I’m Paul Evans.

[applause]

Eluned Morgan: Well diolch yn fawr iawn i chi, a diolch am y gwahoddiad I siarad gyda chi yn y gynhadledd gynta sy’n a wneud a poen parhaus yng ghymru. [Translation: Well thank you for the invitation to speak to you in the first Persistent Pain in Wales conference.]

So thanks very much for the invitation to come and speak to you this afternoon. I think this is the first Persistent Pain Conference for Wales and I’m really delighted to see such a varied representation of healthcare professionals here today. And I’m happy to have this opportunity to share with you some key updates in relation to persistent pain in Wales.

Paul Evans: That’s the Wales minister for Health and Social Services, Eluned Morgan who on September the 18^th, that’s 2023, launched the revised Living Well with Persistent Pain in Wales guidelines. She addressed over 170 delegates, mostly health professionals, but some patient representatives including those of us from Pain Concern, and some service providers.

The full document is available to view online, you’ll find the links on Pain Concern’s website, but throughout the day I was able to eavesdrop on some of the conversations going on in workshops and talk to some of the service providers.

Eluned Morgan: September marks Pain Awareness Month and today represents a valuable opportunity to raise awareness of an often unrecognised aspect of pain, which is, of course, persistent and chronic pain. And what we know is that this condition affects a significant proportion of our population. I think it’s estimated between 33% and 50% of the population suffer with some form of persistent pain. And that’s up to 1.3 million adults just in Wales. So we are talking about a lot of people here. And these are conditions that can have a major impact on a person’s quality of life, their ability to work, to function, as well as clearly their mental well-being. But we know that with the right information, support – collectively, we can develop pain services in a way that produces better outcomes and experiences for these individuals. And that’s why the Welsh Government has been working closely with our partners in the health service, academia and those with lived experience to refresh the Living with Persistent Pain Guidance.

Owen Hughes: I’m Owen Hughes, I’m the national clinical lead for persistent pain in Wales.

Paul Evans: It’s a refreshed guidance; what has happened between 2019 and 2023 that might need refreshing?

Owen Hughes: Well, I think there’s, it is the obvious thing, it is the fact that COVID has made a massive difference to the way that we run, deliver services in Wales. It’s made a massive difference to the way people live their lives. And so our role in terms of refreshing that is to acknowledge the fact that now people are using digital much more as a way of engaging with the healthcare services and also the fact that levels of digital literacy have also changed massively, by having to use Teams, Zoom and whatever to keep contact with people over COVID.

Paul Evans: It almost seems as if you would have had to tear out pages 45 to 90 of the previous ones and replace them with something else.

Owen Hughes: Well, the key elements are there. The key, sort of, ideas are very much the same. But what has changed is the opportunity for digital and for the things– At the end of the day, the document is about actually helping people to work with their healthcare professionals. And that’s really what we want to be doing with it, is saying that pain management is not something that healthcare professionals do to people, or do to patients. It is something that people do alongside the healthcare professionals, working as a team and very much working on whatever it is the individual themselves. Whether that’d be staying in work, spending time with your grandchildren, whatever, that’s the core of this.

Paul Evans: How have patients been involved in the writing of this new document?

Owen Hughes: What we’ve done is had various focus groups as part of the thing. People have been invited to review the document in its various iterations over the years. What we want to do going forward now is to really involve people in the development of the services as we go forward. So we’re in the process of setting up a people’s panel for persistent pain, where we want to hear the voices of all sorts of different people who are affected by living with persistent pain. Both the people themselves, but also their carers, families, employers, communities. There isn’t just one person, one sort of person who lives with persistent pain. There are people living in care homes who have persistent pain. There are people living in their own homes. There are people who are, you know, carrying on their normal lives and who aren’t– who have come never come in contact with the health services. So we want to hear from them as well and understand what is it that actually helps them and protects them from having to come and see healthcare professionals.

Paul Evans: How can they get their voice heard?

Owen Hughes: We’re always very, very pleased to hear from anybody who’s got a story to tell or questions they want answered, so they can come direct to us – myself or Sue Jeffs, she’s the other national clinical lead. The health minister is always interested in hearing from people who are living with various different concerns and the services and how they– both positive and negative stories about what’s working. And actually that will always help us to keep the profile of pain high in Wales as well.

Eluned Morgan: Now this was first published in 2019 and we’ve received positive feedback, I think it’s fair to say, on its use as a source that empowers individuals to better understand their condition and to become a more active partner in their own care. And as a tool to aid house boards to plan their persistent pain services appropriately. Now, it’s important that this guidance continues to evolve as we gain more understanding of what works and where there’s scope for improvement. Based not just on evidence, but on talking to people about their actual needs.

Real City Strategy (RCS): We are RCS, Real City Strategy based up in North Wales and we’re running a project called the In-Work Support Services and we’re running it across North Wales, West Wales and Swansea Bay and Neath Port Talbot area.

Paul Evans: So what do RCS do?

RCS: So RCS are a community interest company who support well-being, so we’re currently running the In-Work Support service, but we do also provide well-being training and support to small medium enterprises and other businesses as well.

Paul Evans: And what sort of support is that?

RCS: So basically with our clients, what we do with the In-Work Support service is we’re supporting clients who could potentially go off work through physical or mental health issues. So they’re at risk of being in sickness, absence from work or struggling at work. So basically living well with persistent pain is part of what we’re trying to help clients do. We work with clients with a range of different issues, but obviously a lot of clients do present with pain. We’ve recently been supporting clients with lymphedema, so there are an array of conditions that clients present with. We provide them counselling or access to physiotherapy or occupational therapy to help them manage their conditions and help them to stay in work.

Paul Evans: How do they get in touch with you?

RCS: So it’s self referral. Anybody who’s employed or self-employed over the age of 16. And the way that they can sort of get in touch with our service is via our website rcs-wales.co.uk, they can e-mail or they can phone in to the company.

Eluned Morgan: We know that since 2019 a huge amount has changed. COVID has led to significant developments in how our NHS services are developed and used, including how we can develop and take full advantage of digital technologies to improve access and outcomes for the people that require care. And it was great to see recently an example in how of our health board watching people prepare for surgery – all done remotely – and the feedback from the patients was that this is really, really working for them. It’s preparing them for operations. It did reduce their pain. It was all of these things. So this ability now for us to use this remote access, I think is absolutely transformative.

Gethin Harries: Enw I yw Gethin Harries, d’win gwaithio fel consultant physiotherapyf yn Bronllys yn Powys efo’r tim byw yn iach – the Powys Living Well Service. [Translation: My name is Gethin Harries, I work as consultant physiotherapist in Bronllys, Powys for the Powys Living Well Service.]

Paul Evans: Let me brush up on my Welsh. You’re a physiotherapist working with the Powys Health Board in..?

Gethin Harries: In the Powys Living Well Service. And just to sort of give a bit of context, that is a service that supports people with persistent pain primarily and then also supports people with persistent fatigue. And also weight management.

Paul Evans: Let me put Powys into geographical context. It’s the biggest county in Wales.

Gethin Harries: I believe so, yeah. So I think, you know, from somewhere as high as Welsh Machynlleth in the north. Then you’ve got all the way down to Ystradgynlais. So, you know, you are talking almost, like sort of like a two hour window of driving. We know that in Powys anyone that comes to see someone in the face to face appointment, it’s an average of about a 40 minute commitment for that person. So where we can, we will go digital first for that person, as we recognise it can be easier for them and, you know, and we’re obviously able to help more people across that time as well.

Paul Evans: So it’s mid Wales, not in the industrial areas up to the borders of England, and up to North Wales almost.

Gethin Harries: Yeah, it’s a huge variation of borders, and as you say they border across multiple health boards, multiple areas, England and Wales.

Paul Evans: So it’s a long drive for anybody who wants to see you. So digital is important to you.

Gethin Harries: Digital is important. As I said, we are making sure we come to people as able as well. So we are developing and we have developed a successful contract clinics in key areas. Newtown Ystradgynlais for ourselves but I’m in Bronllys, where we are. But yeah, digital is essential for people because if you think about it as well, when we’re living with persistent pain, the discomfort associated with the long driving, the energy taken to commit to an appointment like that means that hopefully people can have a better quality time with us during that conversation.

And during that physical assessment, as we can do digitally, if we need to. Yeah, we’re talking about rural Powys. So although we have a fantastic, fantastic digital team, if it was someone sat somewhere with really poor digital access, we can arrange that maybe they can have that support from iPad loan, have the right network put in place with the right apps, they’re ready to go for them. They could come to their local library or other local buildings, so they’ve got somewhere safe to have that appointment, if it’s different to where they would be at home.

So as you say there could be online resources that they look at in their own time. Or it could be a programme that they join in a virtual setting with other people across Powys, so they’re able to not only learn, hopefully, some of the hints and tips from us, but also learn from each other. Because, you know, they’re the experts, they’re people living with long term persistent pain. We can show our empathy of that awareness of what we are as clinicians, but actually you can’t beat that conversation of learning off each other and what, you know, what works well and what doesn’t work as well.

Paul Evans: What do these updated Wales Persistent Pain guidelines mean for patients?

Gethin Harries: I really hope for the people that we’re seeing, they recognise that there are multiple choices. It’s not just about traditional previous medical models, interventions where, you know, maybe there’s a perception maybe that we would have medication as a primary treatment or other interventions. That the people are aware that the menu is actually quite vast. And that people want to improve the physical health, psychological well-being as well. Because it’s extremely distressful to be living with persistent pain, and there’s multiple options there for them. And hopefully by people having access to this new document they feel able to be armed with the knowledge, I guess, that they can access multiple services. And what you’re seeing across health boards, you know from Hywel Dda to Betsi, is that– oh, Betsi Cadwaladr in there, sorry, all the way up. Is that you’ve got a variation of those services all going– following hopefully the core principles of these documents. But the variation is probably more to make sure that it’s fitting with the people and the areas that they’re living.

Eluned Morgan: Now the aims set out in this document very much align with our national strategies for a healthier Wales. The Welsh Government’s programme for government and the principles set out in the Well-being of Future Generations Act. By putting a focus on prevention and helping people to stay active and independent. And really importantly, empowering people to do more to manage their own conditions. And I’d like to use this time to draw out some of the key things of the guidance. So there are five key parts of that. First of all, the central role of co-production. What is key is to encourage a conversation between people and healthcare professionals using a biopsychosocial approach that considers the whole person, not just the medical issues. So it’s important for us that people feel listened to and this approach shifts the focus to what matters most to the individual, their everyday tasks and concerns, and helps to set reasonable and achievable goals.

Sophie: My name is Sophie. I am the Education Programmes for Patients project coordinator within Cardiff and Vale University Health Board.

Paul Evans: Now the Education Programme for Patients, EPP

Sophie: Cymru.

Paul Evans: Cymru. Which is Wales.

Sophie: It is, yeah.

Paul Evans: That used to be known as the Expert Patient Program.

Sophie: That’s exactly true, yes.

Paul Evans: And I went on an expert patient program 12 years ago. And I found it absolutely fantastic. No healthcare professionals. Helping me and other people to live with long term conditions.

Sophie: I think that sums up this part of the podcast. [laughs] I think you’ve done it, yes. I’d just like to reiterate that it’s exactly it, really. And like you, I attended a course maybe about 13 years ago now, and part of the reason as to why I attended was I live with a mental health condition. And part of my recovery was medication and the CMHT, which is a Community Mental Health Team. And at the time I had a community psychiatric nurse that was helping me sort of manage my condition in the community. And at the end of that course of clinical intervention there really wasn’t much else apart from – I found out about the Expert Patient Program. And I remember thinking, “what’s this self management?” And for me, when I attended, I thought it was all going to be about my condition. Until I realised that actually there were people living with a range of health conditions on this course, from Parkinson’s to depression to – what then was, we knew was ME – or was then described as chronic fatigue. We know a lot more now. But there was an awful lot of health conditions and I didn’t realise at the time that the Education Programme for Patients was actually an evidence based, research based self management program that was designed to help, as you said, support people to live more effectively while managing long term health conditions that we now know have no cure. And that accepting that self management is part of the process of living some form of life after your diagnosis is really integral to managing in the communities. Which is where we get the most reward and is the most nourishing around our loved ones, in our workplaces, contributing to friendships, to relationships. But without self management I wouldn’t be able to do those things as effectively now.

Paul Evans: Those words, “self management”, they have to be explained, really. It’s not a cop out: “go away and look after yourself.” It’s supported self management. Helping you to live with your condition.

Sophie: I didn’t think I needed help to learn how to do that, but I clearly did and that’s really key, actually. Yes, it is supported. And what was interesting was that the courses, all of our courses, are ideally facilitated by volunteers who live with health conditions themselves. So as you rightly said, there’s not a clinician in sight. So it is people who have accessed the course that clearly feel it has helped them, wanting to give something back. So then they go on the training to be able to facilitate the course, usually now with the condition specific that they access the course with and then they have decided that, actually, I’d like to give something back and I’d like to maybe support another group to live more effectively while managing their health condition. And there it goes then, group on group. We use the term “lived experience” and “peer support”, but I don’t think those words were used. It was just people wanting to learn ways to manage coming together and just sharing that experience. We now have terms that people can associate with, and that is truly lived experience, isn’t it? That you’ve lived a program. It’s been beneficial and you want to help support somebody else manage more effectively.

Paul Evans: But it’s important to say that it’s not just a group of people saying, “oh, I do this, I do that. Oh, yeah, have you tried..? Ohh, that must be terrible.” It is a structured and well researched programme.

Sophie: The self management tools that we base all of our courses on are from years of evidence based research, clinically proven and also fed back through patient experience that these tools have helped them better manage. So we’ve had all of these years we have a handbook that goes alongside our facilitation. And that handbook really, I mean our chronic disease, our long term health condition generic course is now on the 4th edition. So we have grown and we’ve learned and we’ve added and we’ve adapted and new research has gone in, so that we are truly giving up to date and relevant information. And the patients have access to that for the whole six weeks. So in the course sometimes we only cover a small portion of an activity, but then they have further reading should they wish to know more. And that’s where then the evidence comes from, they can really delve into the self management tools that they feel are appropriate for them.

Paul Evans: And we should say – you said a six week course. So that’s one day a week for six weeks?

Sophie: Yes, usually on the same day. So our, sort of, model is two and a half hour sessions, six weekly. Although we just have now devised, with clinicians and patients of fibromyalgia, a condition-specific course. And that’s eight weeks. And what that does is it looks very specifically in the first two weeks about the condition fibromyalgia and then we move into those six weeks of self management techniques to embed those applied self management tools in relation to that condition. So that is an eight week course, but they are usually six weeks.

Paul Evans: And is this just Wales?

Sophie: No, Education Programmes for Patients is worldwide! You can access EPP Cymru in Canada, you can access it in America. You can access it everywhere. And the good thing about that is that we follow the quality assurance. So every year all of our tutors are checked, so quality assurance is checked. We’re assessed. We’re signed off to make sure that the information that we’re giving, as you said, is 1) appropriate, 2) up-to-date, 3) correct, and that we as facilitators are doing that well. So it’s not just a case of we’re taking anybody and everybody just to talk about self management. We are regularly checked to make sure we’re doing justice to the script.

Paul Evans: So how do people get onto one?

Sophie: It’s very easy for us. We have very little criteria. If you’re living with or affected by, somebody living with a long term health condition that includes carers. It could even be healthcare professionals that are maybe providing support and maybe their self management isn’t perhaps where they would like it to be. You can literally go online to eppcymru.org and within that – it sits within Public Health Wales – you’ll see sort of the maps of where you’d like to access the course, but the courses will be the same whether you access them in Aneurin Bevan or Cardiff and Vale.

Paul Evans: There’s one thing I thought at the time when I did mine. I said no healthcare professionals taking part. I would have liked some healthcare professionals to actually be subjects, as in to listen to what is going on there.

Sophie: So would I! So would I. And actually the next course that we have running at Cardiff Royal Infirmary, which starts tomorrow. Actually, we do have some occupational therapists going to attend. So we are trying to encourage healthcare professionals to access this as a resource that then, as you’ve said, if they find it beneficial, they can then use that in their signposting options and also maybe understand what it is we do with the Education Programmes for Patients.

Paul Evans: More power to your elbow. Once again, what’s the website?

Sophie: So it’s EPPCymru.org

Paul Evans: And Cymru is spelled C-y-m-r-u and it means Wales.

Sophie: It does, it does.

Eluned Morgan: So I think self management is absolutely crucial. Empowering people to take control, to manage their pain by highlighting supported self management techniques whilst getting professional help when it’s needed. And this could include attending persistent pain management programs being supported to learn new skills or attending peer support groups. And I do think that this peer support group approach is something that we really need to investigate and push in a lot further. Because people going through the same experiences, and they learn from each other in a way that sometimes even professionals can’t engage with if they’re not going through the same thing. They’ve got- they’ve developed their own techniques that they’re willing and able to share. And I just think that is a whole new approach that we need to develop the infrastructure for. For these people to meet. Even if it’s a digital infrastructure, a virtual infrastructure. I think that powerful knowing it, not going through it alone is really, really transformative for the individual.

Round Table Discussions Actuality

Participant 1: …go find your tribe.

Participant 2: Go find your tribe.

Participant 1: That needs to be a strap line, I love it! [laughs]

Paul Evans: Go find your people, go find people that they’ll, you know, what you’re going through or resonate with them

Participant 2: Yeah.

Paul Evans: Are things improving? Is there greater support out there, or are things becoming more challenging?

Participant 1: Do you want me to answer as the third sector or as an individual? Because I can give you 2 answers. [laughs]

Participant 2: Yeah!

Participant 1: I think for the third sector, yes, it is improving. We are delivering and doing a lot more. But I think it’s that catch-all of getting of what we’re doing and what we’re delivering and having the capacity to scale it up, as the lovely lady here was saying. I think for me as an individual, no, it’s not really changing that much because it’s not necessarily being filtered back to me.

Participant 1: And is that because the demand for support is increasing because more and more people..?

Participant 2: I think it depends where you live.

Participant 1: So it’s still a postcode lottery?

Participant 2: Yeah. And we know. And that’s a frustration – I think we know there’s really great stuff going on over there. But it needs to happen everywhere and that’s the challenging piece of it. It comes back again, scale up. Both within the NHS, some within the third sector.

Mary Cowern: I’m Mary Cowern. I’m the head of Nation for Cymru Versus Arthritis. I think for third sector organisations it opens up opportunities for us. I think a lot of opportunities to work in partnership and certainly start to give more joined up services for people living in persistent pain. I think we need to break the barriers down. We shouldn’t be: third sector – NHS. As there’s physiotherapy, occupational therapy. We should be working together as one team for the best thing for that person living with persistent pain to enable them to live well.

Paul Evans: One of the things I heard in the discussion was that the third sector organisations are split into specific conditions.

Mary Cowern: Mm, yeah.

Paul Evans: Would it benefit people with pain if they could work together more?

Mary Cowern: I think certainly working together more is the way forward. There are, you’re quite right, there’s a lot of organizations that are supporting people living in pain, but also supporting people living with specific conditions. And I think by joining it and pooling our resources, because I think there’s fantastic knowledge out there, and I think that can only benefit the patient at the end of the day and the person living with pain. It, it’s always one of those things, isn’t it? Where you tend to lean into your condition, organisation. But when you’re working with pain that goes right across such a large spectrum. So I think how we can join it with services, but also how we know what other services are out there that we can refer people in to. Because I’m not able to give you know, do it all within Wales. And I’m sure there are those who are in the same situation. So what can we be supporting other organisations through sign posting as well and guiding people who come to us over to other organisations who might be able to fill a gap that we’re not delivering on. So it is really understanding what each of us is doing and how we can do it together and better.

Paul Evans: I think one of the important things about a conference like this is that healthcare professionals who deal with people with persistent pain, they meet people from the third sector, organisations like you. What can they learn from you?

Mary Cowern: I think what they can learn from us is actually working differently. We’re in the luxury of not having to be so complicated, I think. And you know, the more I hear some of the barriers that the NHS are facing of working in a different way. But we are there to take that broader picture and I think we’ve got solutions for working in a different way. So, co-producing services and listening to what the patient and the person living with the condition needs as well and how we can respond to that. I think one of the key things that I was hearing today as well, is how we get the message out there as to what the third sector does. Because there’s clearly some clinicians in the room that have no idea what we do and what we deliver. So conferences like this are super important. We can be here to showcase what we do, but also have those conversations, right? How can we work together? And it is about working together. It’s not about us just doing our stuff in the third sector, It’s how we complement and deliver together. Because at the end of the day the person living in the condition just wants to have their pain supported and managed.

Neil Fowler: My name is Neil, I’m the clinical lead and inward services lead for Case UK. We are based in Merthyr and we deliver the Access to Work programme across Wales and the South West of England and we also deliver the In-Work Service project across Cardiff, Gwent and Cwm Taf area across South-East Wales. area of South-East Wales. Our company has been going for… six years now, and I suppose fundamentally we’re in the business of helping people. And I know that sounds- that always sounds a little bit trite, doesn’t it? But that’s the kind of ethos and the morals of our company and our culture. What we try and do at all times is put the client, or the participant, or the patient – call it what you will, there are lots of different phrases aren’t there – at the forefront of everything that we do.

Paul Evans: So what are your clients – patients or whoever – what do they need help with?

Neil Fowler: All our participants – which is our preferred term – are in work. We look to ensure that they can maintain that employment. So with support with their physical health needs, mental health needs, general well-being and general quality of life. Make sure that every day is a good day. And anyone that comes through us, we’d like to think that after they’ve come through our service, there’s none of that – the Sunday Scaries or the not wanting to go into work anymore, you know? I don’t think anyone goes to work or anyone is paid enough to go into a job that they that they don’t enjoy and then they’re not thriving in and we work towards that. And now we we’ve got a team of physiotherapists, we have counsellors, we have vocational rehabilitation consultants, who are all variously qualified in health related areas. And we work in a bespoke manner, I think, to make sure that people are really well supported and move above and beyond where they are when they first come to us.

Paul Evans: So it’s mental health, it’s physical health, it’s well-being.

Neil Fowler: It’s a one stop well-being shop. [laughs] That’s what Case UK are, I think.

Paul Evans: So these new Welsh pain guidelines being announced today, what do they mean for your clients?

Neil Fowler: We focus on quality of life. I think if you compartmentalise, if you like, so to separate physical distress or emotional distress, I think it’s very much a false dichotomy. Again, what we look at is people’s quality of life and anything that contributes to improved quality of life I think has to be a positive thing for the people that we work for.

Paul Evans: Do you have illustrations of people who might have come to you and have been enormously helped?

Neil Fowler: There’s certainly a rise in people coming to us with fibromyalgia, which often isn’t given the credibility that it deserves. But fundamentally, these are people who are reporting they’re in pain and they’re struggling from a personal perspective. I’ve worked with a number of participants. And while… you know the status of fibromyalgia, obviously, there isn’t anything in the future looking at a cure, but we’ve been able to look at the research we’ve been able to look at alternative ways of managing things. We’ve been able to take what is a physical and neurological condition and work on it from perhaps a cognitive behavioural perspective, which again it ties into what I was saying previously about it’s a false dichotomy. You can’t separate the two; wellness is wellness, well-being is well-being, quality of life is quality of life. It’s a… And I know the term “holistic” does tend to get bandied around with some of the less evidence based ones, but that holistic approach, that whole person approach, I think that’s certainly something that we drive on. And anything like this that seems to be running in the same direction while, you know, Case UK behind it 100%.

Paul Evans: Well, I can speak as an expert myself because I have fibromyalgia.

Neil Fowler: Oh, okay.

Paul Evans: So if I came to you in Case UK, what would the process be?

Neil Fowler: So you would come on to one of our services. So for example, if you wish to come onto our Able Futures access to work program, you would be allocated a vocational rehabilitation consultant who would sit down with you – face to face or via Teams, however you prefer it – obviously, change the world. Or, over the phone. And perform sort of a biopsychosocial assessment. And that’s a very fancy way of saying I’d speak to you and say, “what’s going on, what’s happening, what can I help you with?” You know, “what do you need? What do you want me to do?” And we would get a little bit of an action plan together. And a lot of what comes through from people in similar situations to yourself is things… Perhaps my GP isn’t taking me as seriously as they might. That’s quite common, I’ve got to be honest with that. Work isn’t taking me as seriously as they might, you know. There’s a lot of… ignorance, I would imagine. We try and dispel that ignorance, but what we would also help you to realize is that you’re not alone in this. So you’ve got us, you’ve got me, your vocation rehabilitation consultant. Or we can find you some referral pathways. We can find you some treatment. Through physiotherapy, perhaps through counselling, perhaps through life coaching, perhaps through whatever it is you might find that’s missing in your life. Perhaps your employer isn’t particularly well aware of the situation. In that case, we can deliver some training. And I suppose from my perspective as a practitioner, as vocation rehabilitation consultant, and what I would be saying to you is: you’re not alone, you’ve got me. But also, have you thought of finding your tribe? Because lots of people don’t. Have you thought of finding the people who your condition resonates with, who understand some of the things that you’ve been through and some of the things that they’re going through and give you that different take? I don’t know if this resonates with you.

Paul Evans: It really does.

Neil Fowler: Good.

Paul Evans: It sounds like almost a mediator in the middle of everything who will listen to you and help you through some of the gates that may be closed.

Neil Fowler: Certainly, yeah. Some of the barriers, some of the barriers that are thrown up with any condition. Like from a personal perspective, I’m a migraine sufferer. Everybody knows what a migraine is, but some people say, “Surely… surely it’s just a headache.” Well… well, no. So I could kind of empathise with that frustration and from the perspective of the colleagues that work for us as well. Probably more than 75% of us have experienced similar things to the people that we’re working for. And I think that makes a real, real difference when you’re trying to support people.

Paul Evans: So it’s Case UK.

Neil Fowler: Case UK Limited.

Paul Evans: And the website?

Neil Fowler: It’s www.case-uk.co.uk Anyone that needs support can get on the website, give us a ring. We’re there to help. I suppose our tagline would be “if what you need is solution, not a waiting list”.

Eluned Morgan: Communicating without judgment is essential as well, raising awareness that using certain phrases and language to describe the cause of people’s pain may be unhelpful or misleading if it’s not clearly explained. We often over complicate things, don’t we, in relation to health and people come out from surgeries or from healthcare settings, and they haven’t got a clue what you’ve been talking about. And we really need to make sure we simplify our language to make sure that we’re communicating in a helpful way.

Bethany Davies: My name’s Bethany Davies. I’m a healthcare support worker for the pain team at Aneurin Bevan University Health Board. I work alongside Dr. Jeffs with clinics and I also work alongside our chronic pain nurses just offering support and patient liaison, really.

Paul Evans: So what does that involve?

Bethany Davies: It’s the simple things like booking patients in and things like that, but it’s also just helping them ease into clinic trying to help with their anxieties that they may have. I act as a chaperone for examinations and things like that. But we’ve also been working on some new leaflets, some new patient information leaflets. Including one about sleep and updating our TENS machine information just so it’s simpler for our patients to understand. Sometimes I think medical jargon just adds to the stress. So I think if we can make it a little bit easier for them, it does seem to take away some of their anxiety, I’ve noticed.

Paul Evans: Is it rewarding?

Bethany Davies: Very, very rewarding. Yeah. You can see a difference in patients just from having a conversation. You can just notice that their anxiety and their stress and their worries seem to just decrease a little bit. And sometimes it’s a very emotional job when you hear patient stories and what pain can actually do to somebody. So I used to work in A&E before so I would always see the beginning of the story. But working with the pain team now you see the end and you see what actually persistent pain can do to a person. So I’ve become very passionate about it.

Paul Evans: These Persistent Pain Guidelines, the Wales Persistent Pain Revised Guidelines…

Bethany Davies: Yeah

Paul Evans: What do you think they’ll mean to patients and to you?

Bethany Davies: I just think it’s just gonna be able to maybe open up a conversation. Just allow that bridge between the patients and clinicians and healthcare. And I think it’s just gonna make it a little bit easier to understand [laughs] and easier to access the help that they need and that they’ve been waiting for. Because unfortunately it is a long process. But I like to think that we’re now on the step to making things easier for our patients.

Paul Evans: And events like this in Cardiff today, they actually bring persistent pain into the limelight.

Bethany Davies: Exactly. Yeah, I found working in the pain team that we’re not shouting about ourselves enough. And it’s something that I’m hoping to bring into our little team and hopefully we can spread that across. But no, I don’t think pain is spoken about enough. I don’t think it’s acknowledged as much as others. So yeah, I think things like this are really important because we need to get that conversation started.

Round Table Discussions Actuality

Participant 3: So what strengths do service managers bring to the MDT? [laughs] Yeah.

Participant 4: And we asked the right questions as well because we’re not profession specific. We asked the right questions. I’m, I asked the, you know, not the stupid questions, but the obvious questions. So I think that as well, we ask what needs to be asked. And we – lots of why’s, you know, Five Why’s.

Participant 3: But these are probably the same questions that we in Welsh Government and the management at that level want to know. We want to know the holistic view of it rather than, we inject X amount of people per year and everyone seems happy. It’s like, well…

Eluned Morgan: We also need to reduce ineffective treatments. Now if we follow the principles of prudent and value based healthcare, we can reduce ineffective treatments and focus on improving a person’s functions. And what’s important is that we’re helping people with their pain management, but it’s not always about the kind of interventions, the medical and pharmaceutical interventions, there are other ways of doing it as well. And not to over prescribe is also crucial.

Catrin: So my name’s Catrin. I’m here from Health Education and Improvement Wales. I’m here with my colleagues from a AWTTC and we’re here promoting a resource that we’ve pulled together with the clinical leads on analgesic stewardship and pain management. It’s a resource- web landing page intended for healthcare professionals, so it’s got some webinars, links to all the guidance and some useful websites on there that we hope healthcare professionals from across a range of roles and sectors will find useful.

Paul Evans: How will the patients benefit from this?

Catrin: So they’ll benefit indirectly because this is intended for healthcare professional use, obviously by educating and ensuring our healthcare professionals out there have the accurate information and consistency across the key messages in the guidance, they’ll ultimately then be able to benefit their patients.

Paul Evans: How do healthcare professionals get in touch with you or get involved in this project?

Catrin: So we’ve been letting healthcare professionals across Wales know about this resource through our networks at Health Education and Improvement Wales, it’s been on our social media. But they can find it on the HEIW website under “Support and Awareness Campaigns”. There is a page specifically on analgesic stewardship and pain management resources on there.

Eluned Morgan: And finally, we need to upskill our workforce by providing advice on continued professional education on persistent pain to ensure we build a multidisciplinary workforce and truly integrated health and social services. So yesterday marked World Patient Safety Day and this year the World Health Organization have chosen the theme “engaging patients for patient safety”. The citizen voice is key to ensure our services reflects the needs of those that rely on them.

Stephen Allen: My name is Stephen Allen and I’m the regional director for Llais for Cardiff area and Glamorgan. Llais is the new citizens voice body for Wales to replace community health councils prior to april. Our role really is to be the voice of the patient, to be the voice of the citizen, across health and social care services when they’re using their services, about their experience. What’s important to them that they wanna feedback both to local authorities and also the NHS.

Paul Evans: So what do these new guidelines, these persistent pain guidelines, mean for your clients?

Stephen Allen: I was listening to some of the conversations on one or two tables I could hear and it was very much: the patient doesn’t understand what they’re being told. The patient doesn’t understand what we’re saying clinically to them, the patient doesn’t understand that well. I would turn that back on and say we’re actually… Have you given the opportunity for the patient, 1) to ask you the questions or what you mean, clinically? Secondly, have you said to the patient to go away with this information because there’s a consultation – you’re only taking about maybe 10% what you hear. You then go away and think about that. So do you get opportunity for the patient to come back and say, what did you mean by that? What do you mean with that? How often are patients given an opportunity to go back to the person who’s giving them whatever news that is? To actually say, “what did you mean by that and what does this mean?” Because only afterwards when you go away, how often we want to see our own GP and the GP can give you some advice. You’ve gone away, you think “did… did he say to take the blue tablet or the white tablet?” You’re not given opportunity to go back and check. So I would say from a persistent pain point of view is how are they going to do a sense check that actually the patients are getting a better service because of this guidance being issued?

We always have to test the NHS, our local authorities. Because the whole ethos of the NHS is patients at the centre of the services, but actually for them to be in the centre of the service they need to help to shape and design it and actually assist with bringing it forward and actually being that voice of their community, being the voice within that particular clinical field, bringing that to the table. And I did pick that up from some of the conversations I heard today.

Paul Evans: I’m a patient with persistent pain.

Stephen Allen: Yeah.

Paul Evans: What I feel about coming to a conference like this is… do patients like me actually know that people are talking about them from different disciplines? That they actually- something is being done rather than GP, doctor writing a script.

Stephen Allen: I would agree totally because I don’t think patients do know. The public don’t know this is going on today. I’m quite sure this was opened up to the to the public to volunteer to come in and join. Those with persistent pain or those who have experienced a persistent pain may be careless, for example. It would help them to understand what’s actually coming on the line, what they could expect from their clinician when they speak to them. If this guidance is being, sort of, enacted. So those are the things that is having that communication with the wider community, the wider public. To say, actually, we’re having a discussion about this. Would you be part of that discussion to help us take it forward and actually make this a living document rather than a document that’s put on the shelf somewhere, gathers dust. So what we have to see is it’s being lived and enacted in every contact made and not, as you say, the GP just writing a script for sort of a payment. Well, that’s important. Perhaps in some cases we need to live this document. Like any strategy that comes out or any document that comes out, it has to be based on lived experience.

Eluned Morgan: I’m pleased to say that along with launching this document, we’re working to develop a People’s Panel for persistent pain and it’s our intention to engage with people who are affected by persistent pain, both directly or indirectly, to make sure their voices are heard and are a part of our future planning.

Sue Jeffs: I’m Dr Sue Jeffs, I’m a consultant in pain management, but I’m also one of the national clinical leads for persistent pain in Wales working with Welsh government.

Paul Evans: I covered the 2019 document…

Sue Jeffs: You did!

Paul Evans: And of course as you say COVID has changed everything in the world, but what are the real changes now?

Sue Jeffs: I think the real changes is how we talk to our patient group. Where we used to always drag patients to clinic and then them sit in a car and then they get stiff and sore from sitting in the car. We’re sort of trying to think more about what’s right for the individual. And that’s reflected in the document. Again, it’s about, where appropriate, doing virtual, telephone, not necessarily bringing patients in. But I also think it’s that self management, trying to get that balance between “what can we do as a healthcare support system?” – but also “what can the person with pain do?” And trying to make those two marry a little bit more than they did before. It’s that co-production, shared decision making.

Paul Evans: So it’s bringing the patient into the team.

Sue Jeffs: Definitely. They are part of, and they’re an expert! They’re an expert in their own pain. We forget that sometimes. And so it’s about that listening. It’s about having the patients know what they want. They felt their pain. They’ve lived their pain, that pain experience. And that’s what we should be working with, is that experience. So yes, you’re right, they’re part of the MDT team.

Paul Evans: So at the end of this Living Well with Persistent Pain in Wales Conference, how confident are you that on Monday morning people will feel brighter about the future?

Sue Jeffs: I’m hoping that- we’ve had so many different people in the room. I’m hoping that will drive discussion. Changes aren’t gonna happen overnight, we know that. But I think if we can start those conversations, Owen and I have got lots of ideas and thoughts as to where we want to go moving forward. Some of that’s around education, education for healthcare professionals, of all groups, not just the medics, but we’re talking about all of the other groups. Working with patients, so we’ve got our people’s panel being developed to try and get that patient voice to understand what they want. And what their barriers are to coming to us. But also us perhaps going back to those people living with pain to understand what we can do to support them. So it’s that two way conversation. So I’m hoping that in a year’s time we will be further down the line. It might not be next week, but we’ve got lots to work on. To make that difference, hopefully in a year’s time.

Paul Evans: That’s Dr Sue Jeffs, one of the national clinical leads for persistent pain in Wales. As in every edition of Airing Pain I 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 judgements available, you should always consult your health professionals on any matter relating to your health and wellbeing. They are 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 on which ever platform you’re listening to this on or the Pain Concern website, which is painconcern.org.uk. That will help us develop and plan future editions of Airing Pain. And of-course there’s more information including links to all the organisations featured in this edition of Airing Pain at the Pain Concern website.

Well, raising the patient voice to delegates at this important Living Well with Persistent Pain in Wales conference was Pain Concern’s Heather Wallace. Here are her thoughts on the day before Wales Minister for Health and Social Care, Eluned Morgan’s final remarks.

Heather Wallace: My impression is it’s very, very buzzy. I’m delighted the conference is going ahead. I’m delighted to be asked to present the patient voice. I think we all resonate with the messages, collaboration, empowerment, helping people function and achieve their potential and their goals, personal choice. But there’s a huge challenge at the end of this conference on how we actually roll this out to the benefit of the population in Wales, which is what we must do. But it’s a terrific event, great document and I have to congratulate everybody, including the Welsh Government and the Welsh Health Minister for all the work we’ve put in.

Eluned Morgan: My ask of you today is to truly take a person centered approach to working with those who experience persistent pain. To see people not just as patients, but to recognise the whole person behind the symptom, to listen, to have compassion. To communicate clearly and without judgment, and to provide options in place of directives. Please help us to help them to focus on self management, to improve function rather than just pain relief. To adapt as challenges arise and to engage meaningfully with each individual as the expert in their own life. By working collaboratively, providing holistic care and empowering individuals, their loved ones and their employers, I know we can greatly improve the quality of life of those people living with persistent pain.

Dwi eisiau diolch yn fawr i chi am wrando a gobeithio wnewch chi fwynhau gweddill y diwrnod

I want to thank you for your continued commitment to this cause. You are already transforming people’s lives and I do hope that in launching this refresh document, we will be able to go further, we will be able to help more people who are struggling and who need our support.

Diolch yn fawr iawn i chi gyd. [Translation: Thank you all very much.] Thank you. [applause]

End

Organisations featured and links to website:

RCS – Real City Strategy: www.rcswales.co.uk

Education Programmes for Wales: www.eppcymru.org

CaseUK: www.case-uk.co.uk

Versus Arthritis: https://www.versusarthritis.org/in-your-area/wales/

Living With Persistent Pain in Wales: https://www.gov.wales/people-experiencing-persistent-pain-guidance

Contact us:

General enquiries: info@painconcern.org.uk

Media enquiries: editorial@painconcern.org.uk

Pain Concern Helpline Telephone: 0300 123 0789

Pain Concern Helpline Email: help@painconcern.org.uk

Office Telephone: 0300 102 0162

Registered Charity no. SC023559. Company limited by guarantee no. SC546994. 62-66 Newcraighall Road, Edinburgh EH15 3HS

First Broadcast 30 August 2023

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Miriam Brand-Spencer: This is Airing Pain, a programme brought to you by Pain Concern, the UK charity providing information and support for those living with pain, their families and supporters and the health professionals who care for them. I’m Miriam Brand-Spencer. And those of you who listen regularly may have noticed that I am not producer Paul Evans, who is having a well-earned break. I’ve worked behind the scenes on Airing Pain for just over a year now, and hope you enjoy this edition, which explores the complex relationships between dance, self-compassion and pain.

Sarah Hopfinger: Welcome. Take however long you need to settle in to where you are. Throughout this experience feel free to do what is most comfortable for you. You can sit, stand, lie down, stretch, lean, move around. You can snack, drink, make noise, look away, close your eyes. If the content of this performance becomes too much, or for any other reason, you can leave and come back.

You do not need to be a polite audience member. You are invited to do what is most caring for your body and mind. This space shakes its head at pressure and judgement. It wants another way. It’s a space to rest into your body, to acknowledge yourself, however you are, and to settle in to the richness of listening to pain.

Brand-Spencer: Sarah Hopfinger performing in ‘Pain and I’ during the Edinburgh Festival Fringe in 2022.

This edition of Airing Pain explores a complicated relationship between pain, performance and self-compassion. Can the world of dance offer any ideas and techniques for people in pain? And do performers with pain bring something different to an audience? Here’s Paul back in 2022 at the British Pain Society Annual Scientific meeting where he spoke to Victoria Abbott-Fleming, Chair of the Patient Voice Committee at the British Pain Society and the Founder and Chair of the CRPS – that’s Complex Regional Pain Syndrome – charity – Burning Night CRPS Support.

Abbott-Fleming: We support patients and families affected by complex regional pain syndrome. I’ve had it now for 18 years after a fall downstairs.

Paul Evans: Tell me how it affects you.

Abbott-Fleming: I’ve got a lot of severe debilitating pain all the time. I’ve sadly lost both my legs to CRPS because of severe ulceration and skin breakdown. I’ve got a lot of hypersensitivity, so I’ve got to be careful of what clothes I wear and how I, you know, move around and then colour changes, like I get a lot of those and temperature changes. They’re the main things that affect me.

Evans: With all that, obviously, you have management techniques. How do you manage it?

Abbott-Fleming:I use a lot of desensitisation/distraction techniques, so I do a lot of adult colouring and I’ve started to learn to crochet. It’s not very good, but I’m learning [laughs]. It’s just things to keep my mind active and away from thinking about pain all the time. So, I do pacing a lot – well I ‘try’ – I’ll put that in inverted commas. Yeah, we teach it, but it’s actually doing it in person. And sometimes I don’t all the time.

Evans: But I can tell you, as somebody who has a chronic pain condition myself, pacing is such an easy concept and it is so difficult to do.

Abbott-Fleming: It is so true. It really is. You know, the theory behind it is sound, you know what to do and how to do it. But in practice, there are days that I think I really should do a little bit less work – and it is difficult in practice.

Evans: Just explain what pacing is.

Abbott-Fleming: So pacing is trying to do activities and so you don’t do a boom and bust – not all on one day – try to spread them out over several days if necessary. So, if I’m, doing a cooking, I might do a batch of cooking when it’s a good day. So, I know I’ve got something in the freezer for when it’s not so good, but it’s trying to get a steady pace of activity where you’re not doing all at once or nothing at all because it’s just as bad as doing nothing at all.

Evans: The difficult part of pacing is that, for many of us, we have more bad days than we have good days. So, when you have a good day, you think that the sun is on your back. You don’t think I’m better, you think this is good, this is what I want to be.

Abbott-Fleming: Yes. And you also say, I can do it and I’m going to do it. And that’s the problem because you know that you’re going to do it. And most people do whatever their activity is. But thinking strategically a little bit more and maybe setting it out, even if you write it out on a piece of paper, split the activity up, do something, you know, to change it up, and then you may be able to carry on tomorrow.

Evans: We both smiled when the word ‘pacing’ came up because we know how difficult it is. What strategies or techniques do you use to try and do the pacing?

Abbott-Fleming: At first I did use a piece of paper and a grid and I put the activity that I wanted to achieve in that week. I thought at the beginning I could do all of that but then I realised as time went on, that’s too many things all at once. So, then I dropped it down to a lot less but then I added more rest breaks in to try and get through the day and what I did on those good days. I’d know I’d say to myself, ‘Oh, I’ve got to do those three things today’. And then I try and step back and think, ‘No, hang on a minute, I can’t do that because I want to be able to go out tomorrow’. So, I do try to just do that one activity. It is very difficult.

Evans: So, you’re actually planning, you’re looking ahead to what is coming up in the week or the month or whatever – you’re looking ahead and, in order to be able to do those things later in the week, I have to act like this now. Slow down now.

Abbott-Fleming: Yes. And I know sometimes I think, ‘oh, no, I’ll do it now’, because Thursday/Friday might not happen. I might be too tired. But then I think, well, if that’s what my body needs, I need to rest. But it is remembering that you don’t have to get everything done in that one day. There will be other days.

Brand-Spencer: Victoria Abbott Fleming of Burning Night CRPS Support.

Pacing can be tricky for many people living with pain. But what if your job involves physical movement on predetermined days? How does pacing look for people who perform for a living? We spoke to Emma Meehan, a researcher from the Centre of Dance Research at Coventry University. The recording isn’t the clearest. But Emma had some fascinating revelations as to how dancers approach being in pain.

Emma Meehan: It depends on what part of the dance industry you’re in. But often there is this idea that you should be able to push through pain. And so people then mask pain that they have or they don’t treat it seriously – an injury, for example – sometimes it’s good to keep moving, but sometimes, you need to do other things and take care of your body. Probably there’s some learning that the dance science, for example, is looking at – dancers as athletes and doing just the same things as elite athletes would do with pacing their body. The attitudes were more like, the show must go on type of thing [laughs]. The industry should really accommodate all these kinds of artists out there who have developed chronic pain. People I interviewed, their performances are very caring of their bodies. One artist is called Raquel Meseguer, and she creates these horizontal performances – if you need to lie down, you can, and audiences with chronic illness can take part then as well.

But then many of the dance artists I interviewed also felt their performances were about chronic pain and it’s really important for them to have that on stage. But they knew they would still feel pain afterwards, they might have a flare up, for example, but for them it still felt worth it. Something I read from another author as well about this idea that, you know, as long as you’re choosing the pacing, it’s not like you’re a bad person if you don’t pace right. You sometimes say right – for me – it’s worth it to do this and know I’ll have pain afterwards. So, it’s kind of a funny place to be in that sometimes if you’re making the choice of doing something – well you’ll have to spend a week not doing what you could do if you paced yourself.

Brand-Spencer: Emma Meehan, speaking at the British Pain Society Annual Scientific Meeting 2023.

In 2022, we spoke to Tali Foxworthy-Bowers, a choreographer and movement director who took her physical theatre piece Monoslogue to the Edinburgh Festival Fringe. Monoslogue was about her experience of chronic back pain. So how do performers balance their workload with their health concerns?

Foxworthy-Bowers: Because I grew up in Edinburgh, I’ve been very lucky in that I’ve been able to stay with my grandparents at their house while I’ve been here. So that’s been a real relief because it means that I can go to what feels like quite a safe space every evening and take time out when I need to and kind of decompress. So that’s something that I’m very lucky that I have for the Edinburgh Festival because I think if I was in a share house or it was in a rental, it wouldn’t be the same. I’d really struggle, I think, to kind of feel like I’m able to completely switch off and decompress.

Today was the first show that I did completely by myself, as in setting it up and kind of in charge of everything. And I was quite anxious about it just because everything relies on me and I worry that I can’t give the performance and the piece itself as much attention. But pre-show rituals are quite a big thing for me. I’m definitely not one that can listen to Lady Gaga beforehand and, you know, run and jump around but I’m ….

Brand-Spencer: You’re not really getting psyched up.

Foxworthy-Bowers: …not really getting psyched up at all. I do my physio exercises. One in particular, you know, encompasses the kind of mindful, calming everything down as well and just being, really, on my own and kind of bringing everything back down to earth because it’s so easy to worry about stuff and especially worry that because of the conditions, like you say, of just coming and going so quickly, having such a short get in and get out of the theatre, you know, I can’t cool my body down very well, you know, muscles seizing up afterwards, carrying a heavy bag round with all my equipment in it every day – it’s really easy to worry about things happening to your body like getting another neck spasm and all this kind of stuff. So, I’m quite lucky that my spot is in the morning. Well, lucky in some aspects [laughs] – it’s difficult to get audience members in, but it means that I can have the rest of the day to decompress if I need to. I think if it was an evening slot it would be a different story because I’d be apprehensive about the evening and building up to that and not much time to come back down.

Brand-Spencer: Do you have to consider your body and how you might have to adapt things depending on how you feel?

Foxworthy-Bowers: Yeah, so I talk about getting a neck spasm in the piece and being bedbound for ten days. That actually happened on the first day that I was supposed to create the movement. So, I had, three weeks rehearsal time to create a movement for the piece before my first performance of it. So that obviously took ten days out and the recovery after that added on a few days after that as well. I always have to make considerations and make things slightly smaller in terms of expansiveness and positions and flexibility and things like that. I always have to make them slightly smaller than I would ideally like, but I’m so, so happy with the fact that I can even do this, move with ease and relative pain-free movements. So, I need to keep up the physio body conditioning element of it and, especially, with quick get ins and get outs.

So, I’ve been spending quite a lot of time in the kind of evenings and mornings really just giving my body a bit of extra TLC. I think it’s also knowing that my body is going to take care of itself. I can very easily get into a bit of an anxious spiral about my neck spasming again, especially because when it did so before I was tying my hair up, after I had taught a pilates class so it was completely out of the blue, I had no idea. So, the idea of that maybe happening again does sometimes catch up on me. Also just knowing that this whole piece, that Monoslogue for me, is like a sense of relief and does me a lot of good, as well as pushing my body kind of closer to its limits [laughs]. I think it was my Granny, who I was staying with, also said, you know, if you do need to take a seat it’s quite fitting in the piece so …

Brand-Spencer: You’ve a chair on the stage ..

Foxworthy-Bowers: Yeah, exactly. So don’t worry about it too much sort of thing, which is good, although I’m a bit of a perfectionist when it comes to performing so I don’t think I could have allowed myself do that [laughs] but, you know, I think that if a bit of that was to come out, if I was actually in pain during the performance, then I think it wouldn’t be so much of a worry – like all the audiences that I’ve had have been .. felt really, really nice and supportive. So that makes a big difference I think.

Brand-Evans: Tali was not the only performer in the Edinburgh Fringe in 2022 who had created a show about back pain. We also spoke to Sarah Hopfinger about the creation Pain and I.

Here is Sarah discussing pacing in a slightly noisy part of town in the middle of the world’s largest arts festival.

Hopfinger: I feel like even the idea of pacing has been in my creative process because, well, I guess the intention of going, well, I’m going to work with my body how it is today, and that’s how I’m going to make movement – as well as then actually making the performance, fix things a bit and so I am working with, like, a piece that has a certain choreography and I’m going through that knowing that I can change it if I need to.

As a performer, obviously there can be adrenaline and so it can feel like in my rehearsals I was maybe a little bit more kind to myself – go with my energy. And I think this probably speaks just of part of the issues of the performance world that there’s a bit of me that thinks, ‘I’m just going to go for it today’ [laughs]. A lot of the movement is very gentle and caring for myself but actually there’s some that’s a bit more vigorous and high energy and feels a bit euphoric and like letting go of my body. But I suppose I’m also doing that because I still can move like that, but not all the time – but I can [laughs]. So, it’s like the complexity of it all is kind of there.

Brand-Spencer: And I know you talk a lot in your show about acceptance and a companionship with pain but how do you manage it at the moment on a day-to-day basis? Are there any things you do to try and ease it at all?

Hopfinger: So, I think I’ve spent so much time getting advice about, like, what are the things that are good to do. So, I’ve, like, had physio and I’ve done, like, acupuncture, I’ve done different, like swimming or this or that. But I suppose the things that I do to manage it are the things that I’ve discovered partly myself. So basically, like a walk [laughs]. This is when I don’t have a flare up – it’s like the day-to-day managing.

For me it’s been moving my body in quite a simple way, just walking is key. I do pilates – people told me to do pilates for years and I actually felt really resentful. And then I found a clinical pilates person and yeah, and now I’m quite committed to do my pilates [laughs]. Well, mostly – and I try to do that every day because it’s … even just the movements help, obviously, as well as the, like strengthening of my core, which hopefully means that that’s taking more of the stuff than my back. Yeah, that’s what’s working for me at the moment but I also am aware that it can shift what I need to do.

People mean really well, but I think that can happen so much where it’s like people want to give advice – sometimes it’s really useful, but actually sometimes I think it’s really hard for people that live with chronic pain because we are all different as well. And like, yeah [laughs].

Brand-Spencer: Sarah Hopfinger at the Edinburgh Festival Fringe in 2022.

We’d like to say thanks to everyone who has filled in our short Airing Pain survey so far. Airing Pain is brought to you free of charge, but it’s not free to make. So, it’s important for us to reflect your opinions and receive your guidance to help shape and secure the future editions of Airing Pain. Please take a few minutes to tell us what we’re doing well and not so well by visiting the link in the show description: painconcern.org.uk/airing-pain-survey.

Somatic practices are a mindful style of movement that require the person to focus on the movement and have awareness of their body and the movement within the environment. That might sound a bit confusing, but you’re probably aware of some types of somatic practices, such as Alexander Technique, the Feldenkrais Method and Body Mind centering.

Speaking again to Emma Meehan we heard about her research into somatic practices and what they could offer those living with pain.

Meehan: The thing about arts-based research – it’s very non-linear. So, I wish I could say my finding is ‘X’ but we kind of like found out a lot of different things so I direct you to an article I co-wrote with a collaborator who’s in nursing, Professor Bernie Carter. We found the various overlaps about the bio-psycho social dimension, this kind of movement is physical, but it also touches on emotion. So, for example, one thing might be about how you inhabit space. Some people might close themselves off when they’re in public space. Some people might take up the middle of the space. So, it’s bound up with how you see yourself. Your identity is linked to how you move. This kind of exploration would open up possibilities for people. The other is social dimension – so moving with other people in practice. So how do I interact with another person? Do I hold myself in a particular way because of my gender, for example.

We recognise there were some things in the somatic practices that would be useful and then other things that might be a problem. So often we work with touch and we recognised from some of the literature that actually, say for example, with fibromyalgia, there might be challenges around touch being painful.

Brand-Spencer: You can find audio, video and text-based somatic practices through the links in the show description and on our site. Do let us and Emma know how you get on.

So, some people find relief by considering how they move. But why do some dancers in chronic pain feel compelled to perform their experiences publicly? The performers that we spoke to emphasised the importance of sharing stories. Can telling and hearing about the lives of others in pain even be a form of self-compassion?

Here’s Paul discussing self-compassion with Jenna Gillettt, a PhD student at the Department of Psychology at the University of Warwick.

Jenna Gillett: Self-compassion is being inwardly kind and understanding towards oneself in the face of pain or failure. Self-compassion, particularly in the context of chronic pain – because what the research is showing is that if you apply a self-compassion intervention, so this would be perhaps a short one-off session where you get an individual who’s living with pain to undergo a procedure such as a self-compassion writing task or something like that, or it could even be 8 or 12 weeks of training in self-compassion. And what we find is that typically people who undergo these self-compassion interventions will have, as you probably imagine, improved self-compassion levels, but also their pain outcomes as well can be improved.

Evans: How would I be taught to have compassion on myself?

Gillett: In short, it’s quite tricky and some people will struggle more than others. Again, is self-compassion a trait or a state? This is another argument in the field. Is it something that you can easily manipulate? Is it something that you can easily induce in people?

One technique – compassion-focused therapy, that is a whole cohort similar to acceptance and commitment therapy – that, again, is sort of really cropping up now and is becoming more readily available. A lot of people just don’t know that these types of therapies exist, let alone being available widespread.

But in terms of the types of tasks that could help with self-compassion, there are tasks such as compassionate writing. So, one that’s frequently used is you would ask an individual if you have pain or if you don’t have pain. You ask an individual to write a letter to their best friend. So, you’re writing this letter and you’re saying all of these great things. You know, ‘you’re kind, you’re amazing, you’re funny’. You know, ‘you’re really doing well with life’, blah, blah, blah. And then you ask the individual to read back that letter and you say, okay, now I want you to write or direct the same letter, the same words to yourself. Think about, as though you’re writing that letter, how all those amazing things you’ve just said about your best friend or your mother, your brother, anybody, all of those things you’ve just said. Now direct that energy back toward yourself. Write the same letter to yourself. Because what we find is, typically as human beings, we are heavily self-critical. We like to criticise ourself and we like to think, ‘I could’ve done better in this’. ‘Oh, that was great. I really smashed that presentation, but I could have done X, Y, Z differently and improved better’. And what you find is that, yeah, typically we need to be kinder to ourselves just across the board more generally, which is why it is such a buzz word at the minute. It’s very much this idea with general mental health, but also specifically with people with pain as well. Being kind to yourself is something that’s definitely important.

Evans: I’m thinking about being in the moment now and what is called ‘catastrophising’.

Gillett: Yes.

Evans: I’m with you now. I’m really enjoying your company and I’m finding it absolutely fascinating. But somewhere in my mind is the nightmare journey I had to get from South Wales to Warwick. And what it’s going to be like when I finish talking to you, having to get back. I need to show some sort of self-compassion to get over that, to enjoy this moment.

Gillett: Yes. Catastrophising is another really interesting part of, particularly for chronic pain, that can shape the experience of someone who lives with pain. Pain catastrophising is a specific type of catastrophising. You know, ‘these thoughts that I had, that that day was really bad’. Or ‘when I went to play with my grandchildren, I really suffered for the next week so I’m going to be a bit more reluctant to do that in the future’. Catastrophising can have a massive effect on peoples’ behaviour, you know, how they feel and what they think about ‘what can I do, what can’t I do’? And that then obviously impacts their lives because, you know, you want to play with your grandchildren on the floor and you want to engage with them, but you’re worried that ‘I’m really going to suffer because of this’. But a lot of the time, you know, we again, human beings, we’re very good at projecting things into the future and looking ahead or looking in the past even. We’re not very good at living right now in this second. So catastrophising is another really important part of what can shape someone’s experiences living with pain.

Evans: So, it’s not the same as somebody saying to you ‘Oh for goodness sake, stop feeling sorry for yourself.’

Gillett: No, not at all. Self-compassion is not just a lack of self-criticism or high self-esteem for example, it’s different. It’s more nuanced than that. One general school of thinking in self-compassion is that it comprises of six different things.

So, you have self-kindness rather than self-criticism. You have mindfulness rather than over-identification. So, this idea that you’re kind of living more in the present – right now what’s happening – rather than going ‘Oh, but I’ve got that big thing next week, and if I’m really rubbish in this thing this week, all that’s going to transpire into next week’. Stop doing that. Be much more present in the moment.

And then the final component to self-compassion is common humanity versus isolation. So common humanity is this idea that everybody at some point experiences pain. Everybody at some point in their life will experience suffering of some description. Isolation is ‘I’m the only person in the world that’s feeling this, I’m the only person in the world that’s feeling really bad and this awful and this intensely’. And, instead, it’s about self-compassion, involves bringing that back to a bit more of a grounded way of thinking in that everybody experiences pain – ‘I’m not alone in this’.

Evans: So, for instance, something I’m criticised for at home is that I can remember every time when I’ve made a mistake in my life from .. from my earliest memories through lying about who dropped the plant pot to my parents to this, that .. I can remember all of those and they all affect me. But many of the good points are fleeting – ‘yes but it only lasted a night’.

Gillett: Yes. Exactly. ‘Oh yes but …’ da da da da da . But it might even be a trait of people who research self-compassion that they are also like that [laughs]. Because I am, too. I can remember all of the bad things very, very vividly. And in general, as human beings, you know, negative experiences do tend to stick with us more because everything is kind of emotionally charged and we have a natural want to do well in things and to be a good person. So that could be one reason why the negative experiences tend to stick more.

But yeah, it’s about also remembering, okay, yeah, that that one thing went wrong. Or I got that one bad review, that one bad comment on this piece of work that I did. But what about all these other things that you’ve done throughout your life that have gone really well? And again, the understanding of unconditional positive regard can come into it as well. You know – you’re worthy of love, acceptance and feeling good regardless of how well you perform or if it’s a bad pain day. If it’s a good pain day, it doesn’t matter. You are still deserving of those good experiences as well.

Brand-Spencer: Jenna Gillett there at the University of Warwick.

Here is Tali again on how writing the show and performing it helped her and her audience.

Foxworthy-Bowers: The process of creating Monoslogue has helped me a lot probably mostly just the writing of it all. So, I wrote the script initially and it started off as a lot of journal entries and so that’s really helped me. But I started writing this piece because I was talking to a friend in college who had chronic hip pain and the amount of genuine pain relief that talking to her about our conditions gave me was unparalleled. So that’s why I started writing it, because I was like, if this … if a one-to-one conversation with someone else can help this much with genuine pain relief, then surely this can help so many other people – and me.

Brand-Spencer: And how have you found that the audience has responded to your piece?

Foxworthy-Bowers: Overall pretty amazingly. The first performance that I did a bit back in March, I was completely overwhelmed afterwards [laughs] and I wasn’t really, you know, surprised – I knew I was going to have a very physical reaction, not only like my reaction, but my reaction to the reactions if that makes sense. Yeah, it’s .. it’s been really amazing and it’s just reinforced my thinking of this is why I’m doing it, because, you know, there’s so many people who have had or have chronic pain or illness or conditions that have come up to me and either explained what they have or just said thank you, or had that same kind of revelation that I had of ‘I’m not going crazy having these thoughts’ because it’s just so funny that no matter what you have, just the similar traits and patterns in your thinking are also similar.

And I think I had one review from the Edinburgh performance where someone said very similarly, you know, that people who haven’t experienced any chronic condition will learn a lot from it and those who have definitely will get relief from it. And that’s just – if you could just tie it up with a ribbon then …then that’s it. Done – you know …

Brand-Spencer: Tali Foxworthy Bowers. I asked Sarah Hopfinger how people close to her could support her.

Hopfinger: I think when I felt, like, really listened to – just somebody knowing that maybe they can’t understand what it is like for me, but being really willing to listen to even like the contradictions of what the experience is even if it is hard for them, they’re not trying to make it better. And that’s felt such a relief. I don’t like to overwhelm someone by saying how difficult it can be. So, I think it’s when I felt like really able just to express the sort of complexities of it or just talk about it. I’ve had so many nice connections with people since I’ve been more open about having chronic pain [laughs] and that’s just been a relief both in my life and my art perspective. It’s like made me feel like the richness of it can come out more often.

Brand-Spencer: You’ve put in a lot of messaging to the audience to be gentle with themselves. How important was it to you to put that message in?

Hopfinger: Like vital really, doing what’s most caring for your body and mind, like people can close their eyes or look away or like change positions or leave and come back. They’re all the things I think that I wish I was always given permission to be able to do, and where it’s really going to be okay if I do it. It’s kind of based on what I would like to feel [laughs]. Yeah. And what does it actually mean to feel welcome.

Brand-Spencer: Sarah Hopfinger in caring for the audience, but what about the performers? How can friends and partners support them? Here’s Tali Foxworthy-Bowers,

Foxworthy-Bowers: My partner Hugo, who helped out with lots of the audio and technical elements of it was here Sunday to Tuesday, and he’s a really strong emotional support for me. So, it was really great to have that at the beginning of my run so that I could get all the tears out while he was here [laughs].

Brand-Spencer: Tali Foxworthy- Bowers. Of course, it’s not only dancers in pain who require support. Here’s Paul again talking to Victoria Abbott-Fleming.

Evans: Do you have a partner? Do you have a husband?

Abbott-Fleming: I do, yes. I have a husband.

Evans: How does he help or hinder pacing?

Abbott-Fleming: Well, that’s a tough one because he sometimes does hinder me. But, generally he … he’s more of a person that will say ‘slow down, you’re doing too much’. Like you said, we both smiled when we heard ‘pacing’ and it’s very easy and I do have a plan. I know there is going to be a day that I miss that. And I know I think now I’m going to do it all. I’m going to have to do it all. And then my husband, he’ll say, ‘No, let’s stick with that plan. You’re going to have a rest this morning and let’s see this afternoon.’ Most of the time, 90% of the time he does help. It’s just that 10%, that he does hinder just a little bit because I think he’s getting in the way.

Evans: This feels so familiar because when I’m trying to pace, when I’m working, actually and not pacing, when I’m blowing myself out, if you like, my wife will say, ‘Stop doing that, stop doing that’. And what I really want to say is ‘I manage myself. You don’t understand’ – which is the wrong thing to say.

Abbott-Fleming: It is. Because they do understand. They feel it just a different way they feel. My husband says exactly the same thing. You know, ‘just slow down. You can do it, but just you can’t do it all at once’. And I do want to turn around sometimes and say, ‘Stop. You don’t know what you’re talking about.’ But actually, he does know what he’s talking about. He probably knows it better than we do, to be honest, because he sees it on the outside. We can only see that one tunnel of what we have to do. We know that we’ve got to pace, but they see how much we actually do. You know, he does say, you know, ‘come on, you’re not going to do that’. And he will stop me. He will.

Brand-Spencer: Victoria Abbott-Fleming. Emma Meehan presented a poster at the British Pain Society Annual Scientific Meeting 2023 on ‘Dancers in Pain: Understanding Agency with Chronic Pain’. Here she discusses the interpersonal aspect of agency with pain, how dancers she spoke to look to each other for support.

Meehan: The poster I’m presenting is about agency with pain and the different dimensions of that. So, they were connecting with peers, but they weren’t doing it necessarily to manage their pain. They were doing it to support each other and have recognition for what they’re going through and to advocate for each other as well. And I think that was part of the problem in front of an audience as well. It’s for audiences with pain and also just the general public to understand a bit more about invisible disabilities that you can’t see and, sometimes audiences would then say, ‘Oh, that’s kind of like something else I experience. It’s not the same thing, but now I’ve a better understanding’. So yeah, at that peer dimension, that’s really important.

Brand-Spencer: Emma Meehan on the interpersonal aspect of managing pain.

I spoke to Sarah about how I resonated with her performance as someone who hasn’t been diagnosed with chronic pain.

Interview with Sarah

I definitely relate to when you were saying about can I be bothered? I was saying to you that with the pilates – that with the stretches – I get shoulder, neck and back pain – on and off – and it’s ‘can I be bothered keeping up’. All of this, all of these stretches doing all these really mundane things – can I be bothered or am I just going to live with this.

Hopfinger: Yeah. yeah. I mean sometimes it can feel quite liberating just being like ‘I can’t be bothered…I can’t be bothered… ‘.

Brand-Spencer: And the bit about not doing enough as well – feeling like you’ve done something with it but there’s more you should be doing.

Hopfinger: Yeah, I know. And that’s an interesting experience of guilt because I think when I do have a flare up, I am trying to find the reason as to why I’m having this flare up. What did I do wrong? What was it that I did that I shouldn’t have done? And such a not very helpful energy in the end [laughs]. But I often go through that process even when I know it’s not helpful. It’s so easy to be like, what could I have done differently? But yeah ..

Brand-Spencer: What kind of reaction have you had from the audiences so far?

Hopfinger: It’s been really nice because lots of people have spoken to me afterwards, but also some people just, like, need their own space. But people have said that it’s been quite moving. I think people who do have chronic pain or something similar have said that they felt quite ‘seen’ by the work, I guess that’s what I felt like I needed. There’s quite a lot of space in the work for people to feel things at different moments or to resonate with different things. And there’s been more crying than I thought but I think it’s been quite good tears because, for some people, I think it’s quite powerful – they haven’t seen that experience of chronic pain, like, represented in art before. Maybe especially with performance and dance it hasn’t been – it has been, but rarely – and people have said that it’s felt quite honest which I hadn’t thought about …but yeah of course it is.

Brand-Spencer: And what are you hoping the audience get out of your performance?

Hopfinger: That’s a really good question. Whatever people do get out of it is what they get out of it. But I want to actually be welcoming and to be caring, kind, because I guess that’s about what feelings or atmospheres do we need in order to be able to acknowledge our pain. For me it’s been a lot about connecting to that kindness or that care, not so that then the pain goes away because I don’t know if it will or won’t. What … what is the feeling that’s needed so that there can be a softer relationship. It’s maybe not always just about acceptance because I also feel like the rejection of it is part of the complexity. So, I suppose I want people to feel like they can breathe with wherever they’re at [laughs]

Brand-Spencer: Sarah Hopfinger. So, if self-compassion, listening and being heard are key, what can charities do to facilitate this form of support?

Victoria Abbott- Fleming again.

Abbott-Fleming: Charities like Pain Concern and Burning Night CRPS – I think we play an integral role in patient support and carers support. Once those patients leave the NHS, yes, they’ve still got chronic pain of whatever condition it is, but once they’ve left that appointment they go home and very often they don’t know where else to turn. So, they do use the internet and finding podcasts like this, or magazines or articles by other people can often make people realise that they’re not alone, that there are others that can help. We do offer support services – helplines, for example, live chat support. We’ve just now started counselling therapy service for patients and families because we understand that mental health is crucial, it does play a big role in pain.

Evans: And for patients with these conditions, all conditions, sometimes they just want to talk to somebody else who’s been through it – and not just the person with the condition – it’s the husbands, it’s the wives, the partners, the parents, the children. It’s so important to have that wealth of experience to talk to.

Abbott-Fleming: It makes a difference. It really does. It’s a big network. It’s a community network effectively.

Pain doesn’t just affect the person with that condition. It will affect the wider group, the families, you know, the home carers, the friends even because they see it all the time and a lot of the time there’s not much they can help them do to help apart from be there, but having organisations like ours, we can support them in that role.

Brand-Spencer: Victoria Abbott-Fleming of Burning Lights CRPF

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.

Here’s Emma Meehan on acceptance and the individual aspect of living with pain and how that can be seen in the work of dancers with pain.

Meehan: What inspires the individual aspects, that’s talked a lot more in pain literature anyway, but acceptance of pain – so you’re learning to live with it. That’s actually some way of taking control – dance artists were doing that saying, okay, this is here. How do I dance with it now.

Foxworthy-Bowers: This pain you have, that is your pain. It is part of you now. And it’s true. It becomes part of you, whether you want it or not. But this part is like its own kind of armour, fighting an internal battle that no one else can see while going about your day-to-day life is immensely hard and exhausting.

But of course it is. You are doing two, three times the amount of brain and body work as everyone else. Pain is exhausting. Pain is hard and stubborn. Pain is unpredictable. Pain affects relationships. But we are not our pain.

We own it. OK occasionally it owns us and we have to give up some of our time, energy and tears to its cause. But maybe it means that every other day, every day that is okay and that the pain isn’t too bad, or perhaps, if you’re lucky, the pain isn’t there at all – maybe we see those days as a whole load more beautiful than anyone else. And maybe that’s a gift. Pain is not weakness. Pain is strength. And the way I see it, chronic pain means chronic strength. Or at least that’s what I’m trying to believe.

[APPLAUSE]

Brand-Spencer: The finale there of Tali Foxworthy-Bower’s Monoslogue.

Emma Meehan’s work looked at the impact that various factors can have on the experience of dancers with chronic pain.

The last aspect was agency in the environment. Here she is discussing how the environment can affect how we feel.

Meehan: So, it might be your work environment, your social environment. So, the disability studies – they talk a lot about how environments themselves can be disabling to people. It’s not just that the person has a disability – but the environment is making it impossible for them to live their lives so that a lot of the dance artists were kind of about how do I make an environment that actually works for me? So, I really enjoyed looking at the kind of spaces they were making that made space for people with chronic illness. I kind of liked that it was not hiding pain away but somehow celebrating themselves in public space.

Brand-Spencer: So, the relationship between dance and pain is complicated, and both professional dancers with pain and those from the wider pain community can learn from each other’s experiences, sharing their stories and techniques, and creating wonderful art along the way.

We’d like to thank the British Pain Society for their continuing support and all of the interviewees involved in this edition of Airing Pain. Victoria Abbott-Fleming, Tali Foxworthy-Bowers, Jenna Gillett, Emma Meehan and Sarah Hopfinger. Along with the team here at Pain Concern, producer Paul Evans and broadcast assistant Amy Jupp.

The last word here from Sarah Hopfinger’s Pain and I.

Hopfinger: Dear audience members. Thank you for being who you are. You may need to take your time to move from this experience into the rest of your day. This space doesn’t merely accept you. It needs you to be you for it to be itself. This space shakes its head at pressure and judgement. It wants another way. Thank you.

[APPLAUSE]

End

Transcribed by Fiona Clunn

Contact us:

General enquiries: info@painconcern.org.uk

Media enquiries: editorial@painconcern.org.uk

Pain Concern Helpline Telephone: 0300 123 0789

Pain Concern Helpline Email: help@painconcern.org.uk

Office Telephone: 0300 102 0162

Lindsay Mclean

Pain Management Programme participant

A graduate of the pain management programme, Lindsay McLean, tells her experience of the programme and how it has transformed her relationship to pain.

‘Passion is the bridge that takes you from pain to change’
Frida Kahlo

Fed up, fatigued, frustrated and flippin’ sore beyond words is how I would describe my life before being accepted onto the pain management programme. I had already been living with chronic pain for a few years, which had become increasingly persistent and widespread. I was trying to discover any form of relief or solution and felt I had explored every treatment, medication, intervention I could possibly find – all with temporary, little or no success. Eventually I gave up and resigned myself to a very restricted, highly medicated, disappointing and painful life, all of which had begun before my 30th birthday.

My first Pain Management session

When the pain management programme was first suggested to me, I was extremely sceptical. I had been down this road many times before with little to no improvement from the many medical appointments under my belt.

However, my very first session piqued my curiosity as I had not expected to be in such a welcoming, supportive and understanding environment.

It was a group facilitated by the pain management team and comprised of a group of people who lived with chronic pain. Like myself they had endured many struggles because of it, and up until this point I had not encountered anyone who could relate to what I was going through. When I chose to share my experience to the group, I saw a lot of nodding heads, which brought me a great deal of comfort. For the first time I felt a little bit less alone with my pain and realised I was part of a much larger pain community. It was a very emotional and cathartic first session.

What the programme included

The pain management programme took a structured self-management approach, learning about pain education, goal setting, activity strategies, stress management, sleep hygiene, meditation tools, medical management and so much more. I learned about the science behind my pain, and how I could incorporate what I had learned into my daily life, and work with confidence towards important goals I thought had been permanently robbed by pain.

Finding patience and self-care

I’m only human so sometimes I would get frustrated and would want to get the hang of things as quickly as possible. I wanted to go back to ‘normal’ and I would try to rush the process.

I had to remind myself that a bit of self-care was important, to not push on when my body was telling me it was time to slow it down. I also had to remind myself to have patience and even if it felt a long way off, that my capabilities would increase over time. And you know what? They did. They really, honestly did…beyond my wildest expectations.

What I’ve learned

It’s been 12 years since I first experienced chronic pain and found how debilitating it can be, and now I say with the utmost confidence that I live a very full, purposeful, active and extremely happy life, even though I will always have pain.

I’ve learned to communicate my needs and limitations to others without guilt or frustration – which has dramatically improved relationships. I’ve found acceptance – no focus on or comparison to the person I used to be, but the person I am and still can become. I’m not cured – I still experience chronic pain, I still have flare ups and use crutches from time to time but now I have tools to manage pain with confidence, and cope with any setbacks in a positive and effective way. I’m now in control of my life, not my pain.

Returning to Pain Management Programmes

I often come back to speak to new pain management programme groups to share our journeys. I remember how daunting it can feel to show up to that first session and it is important to me to offer reassurance and answer any questions I can as a former pain management programme graduate. I feel this is vital education which can help so many who are struggling without any tangible guidance or direction to help manage a long-term condition with a long-term strategy.

I do get benefit from visiting these groups too – it is very helpful for me to remind myself of where I was and where I am now. To look at the tools I used to get there, the ones I may have forgotten, or ones that were perhaps not applicable to me years ago but could be useful now. Managing our pain is something we must do every day, but it truly becomes second nature, and it was the pain management programme that showed me how.

‘There are no mistakes in life, only lessons. There is no such thing as a negative experience, only opportunities to grow, learn and advance along the road of self-mastery. From struggle comes strength. Even pain can be a wonderful teacher’
Robin S. Sharma

The pain management programme showed me how to look towards the future without fear and not to underestimate what I can achieve. I wasn’t alone and anything is possible – for that alone, the pain management programme will for ever have my enduring appreciation. I will continue to sing its praises until someone finally tells me to shut it!

Further information on Pain Management Programmes

Find out more about North Ayrshire Health and Social Care Partnership.
NHS Guidance on managing your pain
Breaking Barriers: Pain Management Programmes video
Airing Pain: Experts by Experience: Working Together in Pain Management Programmes

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Panel y Bobl ar gyfer Poen Parhaus

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Tell us about the challenge – what was the idea and how did it come about?

What motivated you to participate in this charity bike ride?

Have you participated in any other charity rides or cycling events before?

How did you train for this ride? Can you share some of your training routines?

What challenges did you come across during the ride? What did you do to overcome them?

Did you have any personal goals for this ride? If so, what and were they achieved?

What were the highlights of the challenge?

Is it too late to support the cause you’re riding for?

Do you have a message for other riders or anyone thinking about participating in a charity ride in the future?

Feeling inspired?

1. What inspired you to participate in this fundraising marathon (and have you done anything like this before?)?

2. Why did you choose to raise money for Pain Concern?

3. How have you been preparing for the marathon?

4. What challenges have you faced during your training and how have you overcome them?

5. How can people support your fundraising efforts?

6. What would it mean to you to reach your fundraising goal?

7. Do you have any advice for others who might be considering participating in a fundraising marathon?

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