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First broadcast: 22/02/24

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Evans: What are your experiences of healthcare?

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

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

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

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

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

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

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

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

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

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

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

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

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


Contributors:

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

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

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


Time Stamps:

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

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

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

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

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

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

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

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


Thanks

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

Additional Resources:

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

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

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

Further information on the Restore Trial

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Everything you need to know about how to live with chronic pain

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

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

About Pain Concern 

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

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

Role Purpose

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

What you would be doing

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

Role Description

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


Is this role right for me?

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

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


Availability and location

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

Benefits to you

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

How do I apply?

Applications closed 6 Match 2024.

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

Role description

Application Form   Equal Opportunities Form

Peer Support. Join the community

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

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

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

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


Contributors:

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

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

Ceinwen Giles, Co-CEO, Shine Cancer Support


Time Stamps:

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

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

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

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

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

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

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

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

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

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


Thanks 

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


Additional Resources:

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

Shine Cancer Support

Families and Children Resource Page

Airing Pain 118: Pain Management in Young People

Peer Support. Join the community

“Having chronic pain is very lonely.”

Join the community

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Everything you need to know about how to live with chronic pain

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

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First Broadcast: 20 December 2023

Begin transcript

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

Transcribed by Fiona Lunn  

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Pain Matters Magazine

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

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

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

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

The drive to be fitter

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

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

Understanding is key

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

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

12 practical steps to being more active

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

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

Pain Management programme feedback

Here are some responses from pain management programme graduates:

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

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

‘Knowing it’s safe to move helps.’

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

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

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

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

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

A portrait photo of Tim Atkinson.

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


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

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

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

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

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

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

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

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

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

Supplementary Reading

⭐ Supplementary Reading For readers interested in how creative engagement and small-format visual projects can support learning and reflection, this short piece on creative small-format work offers an additional perspective on how detail-oriented activities can foster focus, confidence and personal expression.

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

A portrait photo of Tim Atkinson.

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


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

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

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

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

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

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Last year some of our members kindly contributed to a study carried out by the University of Strathclyde on behalf of HIS (Healthcare Improvement Scotland). This study aimed to explore the advice and support offered to patients by pharmacists taking common painkillers known as NSAIDs (Non-Steroidal Anti-Inflammatory Drugs eg. ibuprofen, naproxen). They were particularly wanting to find out if a newly developed NSAID toolkit provided to community pharmacists had made any impact on the advisory practices. The overall aim is to improve patient safety.

The study is now complete and here are some of the their findings:

Staff Insights

  • Staff using the toolkit are more likely to use the practical resources (such as the till prompts or stickers).

  • Staff who have used the Toolkit report their confidence has increased. Also the amount and quality of their advice they offer has improved.

Insights from those collecting or purchasing NSAIDs

  • There is variation in the delivery of NSAIDs information and advice across community pharmacies.

  • When people do receive advice around NSAIDs safety they find this helpful.

  • People who have been given advice say they are more likely to go to a pharmacy for advice in the future.

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The Welsh Government is interested in hearing more about the experiences of adults who live with persistent pain.

They are looking for people to:

  • join a focus group of people living with persistent pain
  • join a focus group of people caring for or working with people living with persistent pain
  • share your experiences which may be used as a written case study or filmed with your consent for use as a video story.

The focus groups will initially meet twice, on 11 December 2023 and in the new year. As a result of this work the groups may continue to meet a few times a year in the future. The groups will inform Welsh Government on the issues confronting those living with persistent pain and those who support them.

To thank you for sharing your time and your experiences with us, we will cover reasonable expenses and offer those who take part a small gift certificate.

Please take a few minutes to complete the survey and learn more or to register your interest

The survey is open until 30 November 2023.

https://forms.office.com/e/rJiGrRtybk

Panel y Bobl ar gyfer Poen Parhaus

Mae gan Lywodraeth Cymru ddiddordeb clywed mwy am brofiadau oedolion sy’n byw gyda phoen parhaus.

Rydym ni’n chwilio am bobl i:

  • ymuno â grŵp o bobl sy’n byw gyda phoen parhaus
  • ymuno â grŵp o bobl sy’n gofalu am bobl sy’n byw gyda phoen parhaus neu’n gweithio gyda nhw
  • rhannu eich profiadau y gellir eu defnyddio fel astudiaeth achos ysgrifenedig neu eu ffilmio gyda’ch caniatâd i’w defnyddio fel stori fideo.

Bydd y grwpiau’n cymryd rhan mewn dau grŵp ffocws. O ganlyniad i’r gwaith hwn, gall y grwpiau barhau i gwrdd ychydig o weithiau’r flwyddyn yn y dyfodol. Bydd y grwpiau’n rhoi gwybod i Lywodraeth Cymru am y materion mae’r rhai sy’n byw gyda phoen parhaus a’r rhai sy’n eu cefnogi yn eu hwynebu.

I ddiolch i chi am rannu eich amser a’ch profiadau gyda ni, byddwn yn talu costau rhesymol ac yn cynnig tystysgrif rhodd fach i’r rhai sy’n cymryd rhan. Cymerwch ychydig funudau i gwblhau ein holiadur sgrinio, a fydd yn cael ei ddefnyddio i sicrhau bod gennym ni ystod o wahanol straeon o bob cwr o Gymru. Unwaith y byddwn ni wedi adolygu’r rhain byddwn mewn cysylltiad!

Mae’r arolwg ar agor tan 30 Tachwedd 2023.

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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 

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This edition of Airing Pain is on the topic of early childhood experiences
(Content warning: includes abuse, neglect, and household dysfunction)

The World Health Organisation states that ‘adverse childhood experiences (ACE) can have lifelong consequences on a person’s health, and well-being, and can lead to a person developing persistent pain in later life’. A lot of this research is conducted in adults, and of course with changes in attitudes and beliefs surrounding raising children over the years, would they consider events in their childhood to be adverse?

Listen to learn more about this complex discussion. Find out how this kind of trauma in formative years impacts neurobiologically on the stress response, and causes changes on a structural and functional level in the brain that can predispose young people not only to pain but depression, cardiovascular disease, behaviours with increased health risks, and can have impact on mortality.

Contributors:

Dr Katie Birnie, Clinical Psychologist at the University of Calgary.

Professor Lesley Colvin, Project Lead at Consortium Against Pain InEquality (CAPE) and Professor of Pain Medicine at the University of Dundee, and consultant in pain services.

Jen Ford, DRAP Pain Physio & Therapy Lead at Bath Centre for Pain Services & Bristol Paediatric Pain.

Professor Tim Hales, Project Lead at CAPE and a non-clinical Professor of anaesthesia at the University of Dundee.

Dr Lauren Heathcote, Senior Lecturer in health psychology at Kings College London.

Timestamps

2:06 Prof Tim Hales discusses the impact on ACE on chronic pain and how people respond to treatment.

7:02 Prof Lesley Colvin Professor on how ACE causes persistent pain.

16:05 Dr Lauren Heathcote discusses the psychology of pain and symptom perception in young people.

23:26 Jen Ford on the different approach required when working with children.

26:05 Dr. Katie Bernie explore the importance of children and family partnerships.

Thanks

Pain Concern would like to thank the British Pain Society for their support in the creation of this edition of Airing Pain.

Peer Support. Join the community

“Having chronic pain is very lonely.”

Join the community

Subscribe to Pain Matters

Everything you need to know about how to live with chronic pain

Subscribe

 

 

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

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

Our Pain Education Sessions

Fundraise for Pain Concern

Help us to help others

Fundraise

 

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