Miriam, Author at Pain Concern - Page 2 of 4Pain Concern

First Broadcast: 20 December 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. I’m Paul Evans and this is the second edition of Airing Pain focusing on issues faced by children and young adults.

Professor Emeritus Sam Ahmadzai: I can’t imagine the teenager that has a life which just runs smoothly. Everything changes, their relationships with their parents, with their school, with their mates and their, you know, interests in life, they’re constantly changing. Along comes cancer. That’s the big game-changer. Nobody expects that to happen to a young child or a teenager, and that takes a lot to acclimatise to and to live with.

Evans: With over three decades of experience Emeritus Professor Sam Ahmedzai is internationally recognised for his work within the field of cancer. Indeed, he was a pioneer in setting up the speciality of palliative medicine. I spoke to him at the 2022 annual scientific meeting of the British Pain Society.

Ahmedzai: When I was initially training in oncology I was interested in, and my research was measuring, quality of life in cancer patients. So, I was asking lots of questions about symptoms and how it impacted on people. Pain kept coming up as one of the most dreaded symptoms and having a huge impact on peoples’ lives. Back in the 80s we were not actually very clever at how to manage it. We were still just getting to use drugs and interventions. We’re much more sophisticated and more successful now but it was the big thing that had a big impact and I’m kind of proud to say that in the last 30 years pain has actually fallen down as the number one concern. In cancer, across the board, fatigue is the big issue. Pain is still there but, because we recognise it, we jump in there and all of palliative care services, all of oncology, is very good at picking up and managing pain. It’s still a problem but it’s not the number one problem any more. One of the most challenging, but also the most rewarding parts of my work in the last ten years before I retired, I was the supportive care lead for The Teenage Cancer Unit in Sheffield. I guess it helps that I’ve brought up some teenagers myself so I know how teenagers think and act and how you don’t tell teenagers what to do. You lead them – gently. But, when we talk about young adults – teenagers and young adults – ‘TYA’ – when I was starting to do this it was sort of from 16 up to 21 then 25. We’re now talking up to 30 or even 40 years after cancer treatment as a child or teenager because one of the things we’ve discovered is that the late effects of some of the treatments we use very successfully to eradicate the cancer – surgery, radiation, chemotherapy, high dose treatments like bone marrow transplants – they can have effects sometimes 10/20 years later.

Evans: Physical effects or mental effects?

Ahmedzai: The main way that the late effects come out is in terms of hormonal changes. People who’ve had cancer treatment early on in their formative years/adolescent years, children – adolescents – have, sometimes, disturbances of their endocrine system and may be affecting fertility, for instance, growth – those sorts of things – but they’re more likely to develop diabetes and other long-term complications. Some of the late effects are very painful when we use, for instance, high dose steroids in managing people who are going through stem cell transplant as we do for many teenagers, children and teenage cancers. We find that 5 or 10 years later the joints are breaking down. The bone is dissolving. It’s called avascular necrosis of bones and people find it hard to use their arms, their legs and we have to then sometimes use hip replacements and shoulder replacements. This is not something that we even knew about many years ago because people didn’t live that long from teenage cancer but now we are using these intensive treatments which are extremely successful at eradicating cancer but they do take their toll on the body.

Evans: The effects of the cancer have gone – they’re cured or in remission. And the patient is left with ‘where do I go now? All my hopes and aspirations from before I had cancer, everything’s been cut off but the cancer has gone but I’m still here …’

Ahmedzai: Cancer is unlike many other illnesses, even serious illnesses – it’s a real game changer. A person cannot live the life they did during and after having cancer. Fortunately we’re getting much, much better at managing cancer, minimising it, eradicating it – sometimes with very long-term treatments. You know, immunotherapy can last for years but keeps the cancer at bay. What we want people to do is to try and live with the cancer. Not that it’s always there every day. They don’t wake up every day and say ‘well, how I am going to manage cancer today?’ You know how they approach their original work? Did they go back to work? Did they change their work? I was dealing a lot with teenagers who had cancer. And there the issue is when and how do they take up their studies again and go back to college or university or apprenticeships so people need help in navigating what many of us take for granted in life. We start off and we go through. Cancer comes up as a big barrier and you’ve got to get around that barrier or over that barrier and the landscape is different.

Evans: That’s Professor Emeritus Sam Ahmedzai. Well, as you’d expect, a child or a young teenager will be treated within a paediatric service. But, at the age of 18, they legally become an adult. How’s that transition managed within cancer care? Professor Diana Greenfield is a senior consultant nurse at Sheffield Teaching Hospital’s NHS Trust, where she is also the multi-discipline team lead for the Late Effects Service.

Professor Diana Greenfield: We see patients who had childhood cancer and also who’ve had cancer during adolescence and in their 20s and 30s. We don’t see them during treatment. We’re referred to them from a number of different sources following their cancer treatment. And we look after them in their medium to late recovery. Also, we do monitoring and surveillance for the long-term consequences of cancer and its treatment. So that’s my clinical service and, as a consultant nurse, I have, what we call, ‘Pillars of Practice’. So as a consultant nurse we spend 50% or more time as clinical experts and leading clinical services and expert practice, but we also do research. We either lead on research or participate and support research endeavours – but my clinical expertise is in childhood cancer survivors.

Evans: What sort of ages are we talking about there?

Greenfield: In terms of NHS services, the teenage young adult cancer services are organised around young people from when they become a teenager at 13 up to their 25th birthday. So anyone who’s diagnosed with a cancer diagnosis can have access to the Specialist Commissioned Teenage Young Adult Services. But those are often organised in different ways in different places. In Sheffield that’s organised with the Children’s Hospital. They see the younger teens from 13 up to their 16th birthday. If they started the treatment at 16 they might carry on. The Adult Services will care for young people with a new diagnosis of cancer from the age of 16 – they’re in within the Teenage Services until their 25th birthday. Now, for the Late Effects Services, we actually do differ from other places in that we don’t stop seeing them at their 25th birthday because late effects, by their own nature, are late. And so our service actually doesn’t have an upper limit. So, for example, yesterday in clinic I had a childhood cancer survivor who’s 67.

Evans: I find that astounding. So, what issues has he had from being a teenager to 67? I’m thinking that that’s 50 years, 55 years?

Greenfield: He may not have been in the services all that time but, generally, he has lived well. But may have some long-term effects of the previous cancer treatment – the patients who are most at risk are those who’ve had high doses of radiotherapy. Now the fact that he survived that long, we actually don’t even have the records of what he had. It’s extraordinary actually, we do have a radiotherapy radiographer who works within our service and has been amazing at digging out the records going back to, sort of, late 60s/early 70s and, of course, technology has changed as well so it was much more ‘belt and braces’. It’s more sophisticated now. But we pull out the treatment details for those patients and that’s really important for us to understand the types of treatment or the treatment that patients had at that stage because that gives an indication of the sorts of risks and problems. So, for that particular patient, they’ve done incredibly well, but there are some risks for that patient – they had a particular problem with their neck – because they had radiotherapy to their neck and they have lost a lot of strength in the neck. There are some risks associated with that, in terms of, they had radiotherapy to their chest, so they have risks in terms of lungs, heart, skin and other muscle and soft tissue problems.

Evans: Coming down the age scale a little bit, a lot actually, for the teenagers and adolescents, what sort of issues are they coming up with to see you?

Greenfield: It really depends on the type of cancer the young person has had. And the kind of treatment they’ve had. So, the cancer they’ve had, the staging they’ve had, whether it was late presenting, how advanced the cancer was – will determine the intensity of treatment. The more intense the treatment is the more likely there are going to be side effects and long-term effects. But for young people often if they have come through very well and responded very well to the treatment the issues may be around adjustment to their diagnosis. So, we know that there are recovery issues, both emotionally and physically, and there’s often a lag between the two, so there may be a lag between the physical and emotional recovery. So, I can’t say specifically what type of problems patients are there for because there isn’t a ‘typical’. It really depends on the cancer, on the treatment, on the resilience of the patient, on their family, on their circumstances. So, we treat every patient as an individual and really try and address their issues. What we find is that pre-arming them with information does help in terms of managing expectations. So conveying information can be useful. But it also needs to be done skilfully because you can overload with information and our patients may not be ready to listen or hear. So, we do have to take things on an individual basis. Individuals have different capacities for taking on information and want it in certain ways. So, it really is a very individual matter of both their individual risks and how you convey the information to them and their families.

Evans: Is this what you mean by person-centred holistic care?

Greenfield: That’s exactly what it is. It’s about considering not just their medical care and their medical needs, but also their psychological and emotional needs at a time of great change. So, for a young person without cancer, it can be a tumultuous time of change – of transition between child and adult – and that doesn’t happen overnight. We know that doesn’t happen. The young person’s brain is immature until their mid-20s so that’s why there are services until that stage. And there is great variability within that. So, we need to consider the personalised care which considers their own maturity, their own stage of development and consider their medical, physical, emotional and social needs as well. So, it’s very much a personalised holistic service.

Evans: Because I’m just thinking the teenage years – my own teenage years a long time ago – my children’s teenage years, and now my granddaughter’s teenage years. They’re a tough time without health conditions.

Greenfield: It certainly is and it’s challenging for the whole family and I think this is where Adult Services need to learn a lot more from Paediatric Services where Paediatric Services are the experts in giving holistic and providing holistic patient-centred, but family-centred, care and I’m very much an advocate for family in its broader sense, you know, family can be described as a house or a unit of care. It doesn’t necessarily mean the traditional family and we need to consider that approach as much as we can and deliver that within Adult Services. And that’s not always easy because we don’t have the same resources or facilities or ratios that we have that are seen often in children’s settings.

Evans: So, do you deal with people individually and as a group? Parents, supporters, Guardians?

Greenfield: So well, of course, you will see a huge variety of young people and their circumstances – so we may see patients and young people who are living independently at 17, and may have even started their own family, and then you might see in the same clinic a 17/18 year old who’s still really very immature or just not ready to develop so much and are very dependent. But what we must recognise is, of course, when a young person becomes an adult. In the Adult Services our duty of care is for that individual so we do try and ensure that we have a sole consultation, or at least part of the consultation is a sole consultation, with that young person. And it’s about negotiating with the family and ensuring they’re on board with that. So, that they step out at the right time, that the young person is OK with that and doesn’t feel too threatened. So, it is about managing that delicately to ensure that our young people are centre stage and our duty of care is with them. And that’s quite difficult sometimes for the parents to let go. So, for example, we had a parent yesterday who emailed us and wanted clinical information about their son, and no doubt they had their child’s express wish for that, but the son was 32 so we actually have to make sure, that we have the consent of the individual. And it does depend on their capacity, of course, so we need to establish and record what capacity the young person has and we need to have the permissions to be able to communicate and we are certainly not able to give confidential information by e-mail. There are lots of tricky negotiations and circumstances that we take on an individual basis so that we can navigate those processes.

Evans: That’s tough for parents or guardians or carers isn’t it? They’ll transition from being 17 to becoming 18 and that, actually, may be legally when your role as a parent has gone.

Greenfield: We do try and acknowledge that. So often we still see sort of 17/18/19 year old young people attending with their parents but, as they move into independence, they’re coming alone and then we may not see them for a couple of years or so. And then we might start seeing them again and, this time, they’ve got long-term partners who start to attend. And it’s interesting that when you discuss with the young people – there isn’t a stereotype but, more often than not, the parents have the fresher memories. And, if a child was extremely young – hopefully they weren’t – their memories aren’t fresh and they weren’t traumatised by what they had or experienced. But the adults and the parents still remember that. So, we do still try and remember the parents and what they went through although, of course, our Duty of Care is with the young person themselves.

Evans: Because we’re talking about stages of life, we’re talking about from teenage to young adults and you were talking about a patient who’s in their 60s. There are many stages of life between early adulthood and 60s and more to come.

Greenfield: Absolutely. I actually discharged a patient last year who was in her early 70s who’d been coming – had actually high risk. So, there’s no point in bringing people back if they don’t have significant risks. And we had dealt with quite a few problems over the years but discharged her when she developed early Alzheimer’s. She’d lived long enough to get a disease of old age and I felt that it was a success story in a way, sad for her, but a bit of a success story because, despite the fact that she had developed a number of late effects, she’d lived a good quality life for long enough to get a disease of old age. So that must be considered a success story.

Evans: That’s Professor Diana Greenfield. Of course, of those many stages of life, one group that are neither children, teenagers or seniors, for want of a better word, are the young adults in their 20s, 30s and 40s who’ve had cancer. Shine Cancer supports a charity that provides support for people in that age range in person through their Shine networks in England, Wales and Scotland and online. Ceinwen Giles is Co-CEO.

Ceinwen Giles: People come to us at a huge range of times in their experience so we might have people join us while they’re in treatment – even before they’ve started if they’re just newly diagnosed. But we do increasingly have people who are living with cancer for longer periods of time and that might be because they have what’s called a ‘chronic’ cancer. So, there are increasingly types of blood cancers, for example, where there are treatments and you, you can take the treatment and you would live for a very long time. And we also have people who are living with an incurable diagnosis but they might have time – and that could be anything from a few months to a few years. So, we support people across that range.

Evans: Tell me something about your cancer journey.

Giles: I was diagnosed with Stage 4 Non-Hodgkin Lymphoma 13 years ago and I developed it while I was pregnant, ended up getting very ill at the end of my pregnancy so didn’t know that I had it. Had my daughter six weeks early and the doctors thought that I had some pregnancy complications and that was what was wrong with me. But I was really ill and I was getting iller. So spent weeks in the hospital while they ran kind of every test under the sun, and they discovered that I had Non-Hodgkin Lymphoma. So, it was very advanced by the time they found it – I was in a tremendous amount of pain, I was very unwell, I couldn’t eat, I couldn’t really walk very far. I was told that the best thing that I could do was join a clinical trial that was going on in the hospital but it meant I had to stay in the hospital for six months. So, I did that and stayed in the hospital for six months, receiving treatment. At the time I didn’t know anybody who’d had cancer. No-one in my family had had cancer. I didn’t know anything about cancer or cancer treatment, so it was, it was really new and I certainly didn’t know anyone who’d had cancer and a baby. I didn’t know those two things could go hand in hand. So, it was a real shock to the system.

Evans: What sort of emotional support did you get – or from meeting other people in your situation?

Giles: Well, I didn’t meet anyone like me for 18 months, probably a year. So, when I came out I think I was just very focused on spending time with my daughter and trying to recover some of my strength. But everywhere I looked cancer patients were much older. The cancer I had is much more common in, kind of, men who were over 70. You know they were all lovely – everyone I got in touch with via different charities – it was lovely but I didn’t really have anything in common with them because, you know, they were retired, they had their houses, their children were grown and all that kind of stuff. And, so, it was really only when I met my co-founder from Shine, Emma – and that was through another charity who I emailed saying ‘do you have anything for younger people?’ – and they said we don’t but we know this woman. So, I got in touch with her and that’s really how we started Shine. And it was because she’d had a very similar situation and hadn’t met anyone her own age for years and when you do meet someone your own age in that situation it’s really powerful. And it just made a huge difference to me.

Evans: What are the sort of issues that people in their 20s and 30s and 40s face?

Giles: Some of them will be similar to older/younger people so, you know, there will be things around mental and emotional health which are common, but I think, for a lot of people in the age group we support, you know, they struggle with uncertainty and what their diagnosis means for the future that they had planned. So, if you’re at the start of your career, you know, you might have been thinking ‘well I’m going to work really hard for the next five years and get to this next point’ and then, all of a sudden, you’re in a situation where you can’t work that hard anymore because you don’t feel well – that’s really difficult. So work is a big issue. Mental health is a big issue. We also often talk in our groups about fertility. So, cancer and cancer treatment can both have an impact on your fertility and a lot of the advice that’s given is not of very good quality or it’s not given when you need it. It can be quite hard to get the right referrals so people can really struggle with that. You know, they were planning to have a family and they can’t anymore or it’s not going to be as straightforward as they would have liked. And then there’s a lot of issues, I think, around things like relationships and dating. So, you know. I think a lot of cancer support is predicated on the idea that people are older and they’re retired but actually, if you’re 30 and you don’t have a long-term partner and you’re looking well, cancer can be quite a big thing to bring into that, you know. At what point do you tell someone you’re dating that you’ve had cancer, you might not be able to have children or you’re in treatment, that kind of thing. So, there are quite a lot of specific issues, I think, that people in this age group really cope with. We actually have a project that we’re working on at the moment which is looking at how we can better support people who are coming out of what are called Teenage and Young Adult Services and going in to Adult Services – so that kind of age group, around 24/25. There’s quite a lot of help and support available if you are treated as a, they call it, TYA – Teenage and Young Adult, and then you kind of get thrust into Adult Services with none of that support and that can be quite destabilising as well. We’ve been doing interviews at the moment because we want to design a program to help people and people tell us that they were just told that they’re moving to Adult Services and that’s it. But what that means is, you know, the relationships that they’ve built up with the clinical staff or psychologists or other social workers – it all changes – and those people who have helped them aren’t there anymore. And I think Adult Services do really rely on people being more, well, more adult [laughs], you know, more able to manage everything and to look after things and that’s quite difficult if you’ve come from a place where you have people helping to manage your care and then, all of a sudden, you’re thrust into an Adult Service which, to be honest, as an adult is very difficult to manage and negotiate. We could do better as a health system in terms of how we take people who are leaving Teenage and Young Adult Services and going into Adult Services and helping them navigate that, understanding what’s expected of them, who they can go to for help, you know, who will be managing their care. I think that was probably tricky before the pandemic but it’s even more difficult now just because the staff are so stretched and burned out.

Evans: That’s Ceinwen Giles of the charity, Shine Cancer Support, and their website is shinecancersupport.org. That’s shine cancer support, no gaps, shinecancersupport dot org. Now, as in every edition of Airing Pain, I’d like to remind you of the small print – that whilst we in Pain Concern believe the information and opinions on Airing Pain are accurate and sound, based on the best judgments available, you should always consult your health professionals on any matter relating to your health and well-being. They’re the only people who know you and your circumstances and therefore the appropriate action to take on your behalf. Now, it’s important for us at Pain Concern, to have your feedback on these podcasts so that we know that what we’re doing is relevant and useful and to know what we’re doing well and maybe not so well. So do please leave your comments or ratings on whichever platform you’re listening to this on or the Pain Concern website which is painconcern.org.uk. That will help us develop and plan future editions of Airing Pain and there are links to all organisations mentioned in this edition of Airing Pain and much more at that website. Once again, painconcern.org.uk. Now, earlier, we heard from Senior Consultant Nurse Professor Diana Greenfield. So, from experience, are there key messages, particularly for teenagers and young adults, going through their cancer journey.

Greenfield: From a young person’s perspective it’s about living their life, enjoying themselves. They didn’t go through the cancer and cancer treatment not to have the opportunity to make the most of their future. Balancing that with keeping themselves as fit and healthy as possible, and not being too risky with their behaviours. So, the same health messages apply to young people as they do to others – so we really want them to avoid smoking, drinking to excess and taking street drugs/recreational drugs. We want them to take lots of physical activity and exercise for cardiovascular health. So, the same health messages but also to be vigilant – if they are persistently unwell, for more than two to three weeks, they need to seek medical attention. And we also have messages for any healthcare professional looking after them. So very few GPs, very few healthcare professionals, will have seen a child cancer survivor and a cancer history is potentially highly relevant. So, our messages to them are if a young person has got a history of cancer they need to be more vigilant and they need to have a lower threshold for investigation. Those are the key messages really. More vigilance without being overwhelming and obsessive and also a lower threshold of investigation. But we want you to have a healthy, long life.

Evans: Professor Diana Greenfield. So, the last words in this edition of Airing Pain to Ceinwen Giles of Shine Cancer Support.

Giles: You know that scene at the end of the Wizard of Oz where Dorothy, you know, she pulls back the curtain and the Wizard is not at all who she thought it was. I often think, like being diagnosed with cancer or any serious illness is a bit like that. Like life isn’t what you thought it was. You were all walking around thinking ‘we’re in control and we’ve got plans’ and when you get really seriously ill it’s like the veil is pulled from your eyes and you realise oh you’re not nearly as in control as you thought you were. And for your friends and family it can often be the same thing, particularly your partner, because you had plans with your partner and now, all of a sudden, those things are different. And so they see life differently as well too. So, it’s a really seismic shift, I think, and we underestimate the impact that, you know, a life-threatening illness can have on people.

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

End

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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

Peer Support. Join the community

“Having chronic pain is very lonely.”

Join the community

In pain? Don’t understand what’s happening?

“Having someone to help you prepare for your life through pain”

Our Pain Education Sessions

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 144 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?

Peer Support. Join the community

“Having chronic pain is very lonely.”

Join the community

In pain? Don’t understand what’s happening?

“Having someone to help you prepare for your life through pain”

Our Pain Education Sessions

First broadcast 4 October 2023

Download PDF

Listen to edition 139

Listen on YouTube with subtitles

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

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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?

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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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