Lesley discusses a range of issues relating to chronic pain and the CAPE project, including clinical guidelines for professionals, what people experiencing chronic pain can do when they talk to a healthcare professional and how she has learnt what needs to be done differently when asking people to complete questionnaires or surveys about their lived and living experience of chronic pain

CAPE and People’s Voice Media are working together on an important new project. 

The CAPE team is investigating whether exposure to adverse childhood experiences contributes to higher levels of chronic pain in the most deprived communities and the consequences of this. The interaction between the CAPE project, People’s Voice Media and the Community Reporter network will explore how lived experience stories can be used with the research.

OK, but can I get you to introduce yourself? OK, so I'm Lesley Colvin. I'm chair of pain Medicine in Dundee. And I'm a pain consultant in the Tayside Pain Service. Um, I worked as a pain consultant in Scotland for more than 20 years now, actually, um, and I've been involved with the co leading the Chronic Pain research group in Dundee

And with the pre funding design and now carrying out and delivery of Cape Thank you for the introduction. So I'm wondering, why for you is this project important? So what? Why are you doing this project and why is it important for you, but actually people that you support, Um I suppose this project among most of my kind of the the research that I'm interested in it probably stems from my job as a clinician. Um, where, you know, I I see the impact that chronic pain has on people, you know, enormous impact

You know, it's not just that kind of feeling a bit sore, but impact on every aspect of their life, you know, And to me, one of the joys of being able to do research is to try and understand why some people are more vulnerable to chronic pain and to try and understand how we might be able to manage it better. So at the end of the day, we can improve things and, you know, maybe maybe do out of a job in a few years time, but I suspect not. But to me, that's that's a real challenge and kind of joy of doing research

Is that, um, seeing patients in clinic and thinking? Actually, maybe there's something that we can understand better that we can improve things in the future. Thank you for that. Um, a lot of people that shared their stories talked about, um, the challenges they found finding the the right support

So what more could be done to support people with chronic pain? Well, I mean, first of all, you know, you say, Well, we've got to structure our health care services and our social care services to meet the needs of people with living with chronic pain. So you think, Well, how many people is that? And actually, in terms of understanding it scale, how many people actually have chronic pain with unmet need? There's not an easy way to do that currently, and that's that's one of the just very recently funded projects. So if you can understand who has chronic pain and what their unmet need is, that then allows you to structure your health and social care services to address provide services that are needed

But I suppose the other thing is maybe taking a step back, which is probably where Kate comes in, is saying, Actually, we know that people with chronic pain have, you know, they tend to come from areas of high deprivation, you know? So, um, the, you know, lower socio demographic groups. So is there something that we can change in terms of how we structure our society and deliver care? But actually we can start to think about prevention. So that's that

You know, I'm based in Dundee here. It's a city where there's huge health, health and social care inequalities. So how is it that we begin to understand the impact that those have from early childhood in fact intergenerational and then begin to structure our society both health and social care, so that we can address that need? So there's two things

There's kind of addressing the immediate need, so people that come and see me in clinic, What can I provide? And acknowledging that there are limitations, There's waiting lists. There's staff shortages, but also looking forward, said. Actually, we're an ageing population, so the number of people who are going to be living with chronic pain is going up

How can we actually try and reduce that burden both a societal level, but also an individual level? Can I ask you, How does it make you feel? Um, being someone that's passionate about supporting people, living with chronic pain, knowing that there are limitations so professionally, what does it feel like knowing that you you might not have all the resources and means to provide care? Yeah, that's a good question, actually frustrating at times. It is frustrating at times because, you know, within within our pain service. You know, we've got a really good team and they're really motivated

And there's absolutely no doubt that the last couple of years has had a real significant impact on um, most pain consultants are also anaesthetist who were involved in, you know, being in covid IC u day in, day out. And you know, there has been no recovery time because as soon as the covid and the first covid lockdown, and we kind of tried to get back on our feet, what we were trying to do was, you know, reduce the waiting times. And I think one of the things that I find a bit frustrating is that in terms of managing the patient group that referred to me who've got complex, chronic pain, we need a really good multidisciplinary team to deal with that

But if the waiting time for each member of that team, you know, I I see someone after they've waited for six months and then they have to wait another few months. It's really difficult to deliver what you know they need at the right time. Um, so that is frustrating

But at the end of the day, there's also huge satisfaction in doing doing the best that you can with what you've got. And can I ask you why you, um, chose pain as an area of to to to work within Like what? What attracted you to kind of this area? Also an interesting question because, you know, as an anaesthetist, you you kind of some immediate gratification. You have the little syringe and the big syringe

And you know, when things happen, they happen really quickly. You have to respond really quickly, and I think, and that was good fun. I like that

But one of the things that I missed was the kind of, you know, I kind of feel like a deeper relationship with your patients where you're trying to understand. You know how how that condition has affected them and develop a strategy to help them manage it, which, you know, if you're doing just straightforward anaesthetics you don't get So that's That's one of the things that really attracted me to chronic pain and some of my anaesthetic colleagues. You know, that's absolutely what they don't want to do

But there's a kind of a good cohort of an by training who are interested in that aspect of it. And I think the other thing that I've always found interesting is that I do have a kind of scientific inquiry in mind. Um, and I took three years out to actually have clinical medicine to do a PhD to try and understand the mechanisms of neuropathic pain in particular

Um, so you know, I've got that understanding of translational pain research and that, to me has been really satisfying because you can then start to think Well, actually, if this is the mechanism, how can we develop new treatments? Um, and one of my areas of interest is chemotherapy induced neuropathy. And there's some potentially maybe some new treatments that we could be looking at that might actually be able to help prevent developing neuropathic pain during chemotherapy. So that's that's exciting

That sounds like a really important piece of work. And I was really struck by the idea, um, that you shared with me around having to look at the intergenerational, the places and spaces people live within. And so the question I'm really interested in is there might be many people out there living with long term pain that don't get to see somebody like you that has all of that understanding

What would you say to other health care professionals and doctors when you know when supporting people, um, with pain? Because I think it's quite a unique position that you probably find yourself in. Um, so what advice would you give other professionals about supporting individuals manage pain? I mean, I I think, you know, intervene early with the best evidence based management that you can. So in Scotland, we've got the Scottish equivalent of Nice, which is a sign Scottish intercollegiate guideline network

So I chaired the design guideline. The first sign guideline, actually, for chronic pain for assessment management was published in 2013, which is quite a long time ago now, actually, um, but that provided and that that's for our clinicians and that the reason we did that actually was feedback from health care professionals that this is an area where they needed good guidance. Evidence base

Um, we are just recently we've got very good news. The sign organisation have agreed to update the guideline. So there'll be a new sign guideline updated with the best available evidence, which, you know, we hope would be a really good resource for health care professionals

Um, and also for people living with pain, actually, because they're involved in developing the guideline. And there is a patient version as well. What does it feel like working with people in an advisor city? So, um, clearly you work as a clinician with people all the time, but how does it feel like kind of blowing some of those boundaries in terms of working in with the Cape members working in research with people with lived experiences

Actually, that's one of the things one of the things that actually was, and also with other advanced pain Discovery platform, project in pains storm that I find really interesting and just, you know, very rewarding in the involving people with lived experience from really early on. So from before you even get funding and saying, Actually, this is an important research question and why don't we look at it in this particular way? So it's actually without a doubt shaped the design of the project that we're working on at the moment, and I absolutely think, you know, for the better, You know, so 11 of the things that you know we know is that there's new treatments come out, and when you actually use them in clinical practise, you don't get the same results that was reported in the in the research studies. And you think, Well, why is that? And there's a whole number of reasons for that

One is, you know, if you're translating from preclinical models to clinical models there might be problems with that. But the other thing actually is. Are we testing those treatments in the right patient population and asking the right questions and actually speaking to people who have those conditions will help to address your study design so that you can address both those questions effectively

And then if you are doing clinical research, you're more likely to get your true outcome that will reflect how that particular intervention be an exercise intervention or a new drug. How that actually performs in clinical practise and that actually is a really efficient way to work for the health service when we're short of money is that we're actually going to develop treatments that work in the people that need it. That sounds really positive and crucial if we're gonna ensure people get the right treatment

And I wanted to ask you about your own journey as a pain specialist. Have you changed your perception or practise as a result of working in this co-produced way? Possibly not in my day to day clinical practise? And I would say my day to day clinical practise is probably changes the way that I do research, and that's been reinforced in the research arena or working with people with lived experience. But I think at the end of the day, it's, you know, it's starting to simulate all the different bits, putting together the research, maybe actually in in terms of assessing chronic pain, because we use a lot of kind of validated questionnaires

And there's no doubt that, you know, when you speak to people both in the clinic and people you know, working on Cape and Pains Storm is that questionnaires don't actually capture the experience. Question is, are really good for research because you can come up with a number and it's good for analysis. But actually I think integrating that with more qualitative techniques where you get a kind of much more granular understanding of the pain and its impact

So bringing those together, um, would be more effective. So I've been asking people living with pain, What does pain mean to them or like So what does pain mean to you? What does pain mean to me? I guess it's my job, which is probably more than 50% of my life. Um, you know, the standard definition of chronic pain is pain that lasts for longer than three months

But I think you know the the more that I do like pain practise both clinically in terms of research, I think the more questions there are, you know, there's there's a lot. There's a lot for us to do. I'm never going to run out of stuff to do here

Uh, but in in terms of chronic pain and the the reason that I'm interested in it is that, you know, it just has such an enormous impact on people. You know it is, you know, I see patients. As I said, Chemotherapy in neuropathy is one of my particular interests

And I see patients in my clinic routinely, who've had effective cancer treatment, they're cured of their cancer and their neuropathic pain is so awful that they wish that they hadn't been cured, you know? So what? What can we do to actually take advantage of the fact that we can cure cancer in some people? But actually quality of life is really important. That sounds really that that sounds really profound, that somebody has had to been cured from cancer, but the pain means they may, they may not want to be around. Um, really profound

So I'm wondering what your hopes are for the future of pain medicine, pain, support, pain research. Yeah, So I might be biassed but living in Scotland. Actually, I I like the way that we're approaching it

So we're quite good at collaborating. We like working with each other. Um, that I mean, a cap cap is UK wide, actually

But the other thing that I like is being able to join up the pieces so we can work with the Scottish Design Guideline network and we could produce guidelines. We can work with the Scottish government to influence policy and influence policy in an evidence based way so that the research can then be translated quite quickly to change policy. And actually, to me, that is maybe one of the most effective things that we can do so that we're taking advantage of every small step forward and adding it up in an in an efficient way

That's joined up, Um, and that's difficult to do. I mean, the NHS is such a huge and underfunded organisation. It's difficult to change things, but if you can, you work from the bottom up and the top down at some point you meet in the middle

And then I was wondering like, um so I assume that people would come across or find somebody like you quite far along their journey. So what advice or support? You know, what would you be telling people that are starting their journeys with pain and and act trying to get help for pain? So I think maybe the first step is an understanding about their pain. Um, and that's maybe working with their GP or their physio

But there's also some really good, you know, pain. Charity. So there's there's Pain Association Scotland, where they have drop in self help groups

There's pain concern where there's really good educational podcasts are designed for people living with pain. They've got a helpline, Um, other, um, thing that being concern has developed that I like is the navigator tool, which is just a kind of breaks down. So if you have chronic pain and you're going to see your health care professional, you you have a look at this beforehand and it will help you get the best out of your consultation

So, um, you know, lots of people come along to the clinic, and then they They kind of say, I wish I'd asked you that the last time, but I just forgot about it. So this is kind of trying to, you know, help people who have got pain make the most out of that short period of time that they have face to face, or even remotely via teams or whatever with their health care professionals, so that they can get across the things that are important to them, things that impact on them and then also have a discussion about what might be the most effective treatment. And as you say, you know, if you get to the pain service, you know, in a university teaching hospital you're in the small minority

So it's the majority of people who don't ever get there and making sure that there's education and resources available in primary care. Ideally near near to where people live. That sounds like a really important point, and people talked about access being really difficult

I wanted to like take you you back to, um, understanding, sort of pain. And some of the so there. There is a lot of, um um So in terms of pain and the links to early childhood, um, adverse experiences

Um, how What? What would your like? What's your views on that? Well, I I guess that's what keep is focusing on is to try and understand that better. And as I said earlier, that kind of how do you assess that in the first place? So the first work package, which I'm involved in with Lena Case and and working really closely with the Patient Advisory Group on Cap, is about how how do we as adverse childhood experience? And I I think it was really interesting and almost quite humbling at the start. So what we're trying to do is to design a questionnaire for that that can be used for research purposes or clinically, but working with our patient partners so that we ask the right questions and we ask those questions in the right way

But until we've done that, we're involved in reviewing all the literature and pulling out all the different papers and the fact that some of the patient partners have started looking at at that literature with us. But before that, we thought, well, there are still some some some questions that we want to ask, in particular patient populations. And we need to kind of start that now because there's time pressure and we've only got funding for so many years

So we looked at the W H O questionnaire for assessing childhood trauma thinking Well, the W H. O is an internationally recognised organisation. This should be good

And our patient partners thought it was appalling. And that was that. You know? And it just shows that actually, you can't just assume that you know what's there because it's being used by a big organisation or it's been published, is actually correct it and or is going to give you the right answers in any way because it missed the point

Ask the wrong questions. Ask them in an insensitive way that, you know, I could The list could go on. Um, and that that I thought was was a real learning experience for me

Actually. Thank you for sharing that. I would have never imagined that would have been the case for such a big organisation

No, no, no. I not say that about the I don't know how it was developed. I don't know how it was developed, actually, but what we find in reviewing the literature, we haven't actually found any single assessment tool that has been designed with people with lived experience

So that from Cap, that might be the first one. When we do that, that sounds like a really, um, tangible, positive first step. But, um So what? My final question, um, to you And then I'm happy for you to ask me any questions

Is in terms of Cape and so, like, what would could look like for you as a clinician, professional, and a researcher in terms of like, your involvement with Cape? Well, I guess in terms of being able to do what we said we would do so I mean, I don't know if you looked at it, but there's there's a lot in Cap and Tim Hall who's leading. I think he's doing a great job. But you know, we there's people all over the UK working together on different bits with different areas of expertise

So success to me actually has been able to pull that off and produce, you know, the validated questionnaire to produce very good, robust data that will help us understand the mechanisms of why adverse childhood experience impacts on core and chronic pain in later life. Um, and also, you know, for instance, how people respond to painkillers may be impacted. You know, so specific treatments that might help us to target treatment more effectively and avoid potential harms so that that, to me, is one success

Another success is that it doesn't stop at the end of four years, so without a doubt, we will. We will. We will hopefully add to the knowledge, but we'll also add to the number of questions that we need to answer

So I'm hopeful that we'll be building something that won't just be cap for four years but actually will carry on developing and becoming bigger and, you know, in the UK and even maybe even beyond that. And it's interesting we've had the Scandinavian Association for the Study of Pain are really interested in working with us in Scotland, um, on chronic pain and understanding the factors that increase risk and how we might manage it. So there's opportunity to kind of pull together knowledge not only within the UK and Scotland, but also beyond thank you

Do you have any questions for me. Do you have any questions for you? So I suppose so. When we were when we were designing the project, it was me that came up with People's voice media because I was trying to work out a way

Remember what I said about, you know, you do the clinical trials, and then clinical trials and reality are a world apart. And one of them, I'm pretty sure, is that you know, people who have chronic pain, you know, particularly if there are barriers to even get to the hospital will not participate in clinical trials. So it was trying to get that you know, how How can we find ways to support people and to include their voice in what we're doing within So that that that really was Oh, how you guys got involved because, you know, And it was through a patient partner, actually, in another project that I'm working on through the Advanced Pain Discovery platform

And I mentioned that and she said, Oh, I've worked with them and, you know, they've come up with some really good stuff, so that's that's That's how you guys get involved. But I'd be interested in terms of what you think you're bringing to keep. So there are things that are that I think people to media are bringing

So I think People's West Media are bringing, um, an opportunity for people to be involved and a way of being involved. That is, um, and I truly believe this. It is, um, safe and supportive, and it holds people in that process

Um, I just happened to work for people's voice, and I happen to live with long, long term chronic pain. I have never spoken about that with other people with long term pain other than being on a pain management course, that is for six weeks. So for me, it's personally given me so much to hear my experiences validated by other people

I think it's enabled other people to share their experiences and be more open and honest. Um, I think that my experience of academia and academics have often been the opposite to cap, like they, um, go away and develop something and then that gets rolled out. But actually cap is really much about well, here's the people who experience

We want to develop what matters to them. So that's been really refreshing and rewarding. Um, and I and I really believe that this has a long life and longevity because it will affect so many people

Pain. Um, the numbers are just, um, unbelievable. You know that when you actually see the statistics knowing that so many people and knowing that even with in those numbers, so many people never get to see somebody like you or get to be I'm really lucky that I've got a great, um, GP get to be in a relationship with somebody that can make a difference

And I think there are gonna be clear, tangible things from these stories that we can use. So I think these stories will make a difference to professionals. Make a difference to carers

Make a difference to people like me that didn't didn't know about things that I've learned. You know, one of the Cape members, um, recommended a particular way of me managing a particular bit of pain. And I'm like, This is working

This is great. I've never heard this before and it's it's I think it shows that with those firsthand lived and learned experiences, you can really develop what matters and what can make a difference. Yeah, it is interesting, isn't it? When you look back at research over the last 2030 years, why did we not think of it before? No idea

Yeah, it is interesting, but I suppose, Yeah, looking back. So I started. I did my PhD last century not long ago

Um, and at that point involving people's lived experience in your research design, just, you know, I think if you put it into funding application, they would have gone especially a very scientific application. They would be shaking their heads, saying, What's this about? Whereas now, one of the things I really like actually is that you know, it's expected and that that, to me, is a really positive step change in my kind of working lifetime. There's without a doubt, a step change in the perception of you know why? Why would you involve people with lived experience in designing your application and, you know, it sort of

It changed gradually, so laterally you would involve people who lived experience from the time that you got funding, because before you had funding, you didn't have any funding to allow them to participate, you know, without kind of you know, asking them to pay for it themselves, which obviously you can't do. Um, whereas now certainly. And I think most academic institutions at our university you know they are willing to provide funding upfront so that even if your product is not funded, you can still involve people with lived experience in that really early design stage

And I think again, that's something that's changed. Maybe probably over the last five years or so. Um, So we'll start

I think we will start to reap the benefit benefits of that in terms of how effectively research translates into impact for patients. And I think that people living with chronic long term pain face additional barriers to being involved. And I think, um, CAP is really demonstrating that as you can involve people, you just need to think about it differently

I think that will just continue to grow, and it's a good in itself. I think a really good evidence of how you can do this stuff. Yeah, I know another

The paint study that involved in was in terms of the information for people that were recruiting to studies. I don't know if you've participated in a research study. But the patient information leaflet can be quite off putting, you know, because of all the legal requirements

So I attempted to do a graphical information leaflet with cartoons with my limited ability, which actually was OK. And what we're about to do actually over the next couple of weeks is with two of the patient partners on that project is is to do a video so that so that you know, people can access through different media and in different ways the information about the study, the idea being that, you know, it is not just people who are very literate. Who can bear to read this, you know, 10 page long information sheet and who can then access the study

Sounds very important. Um, I know that you have to jump off the call because you've got some other arrangement. I'm gonna stop the recording now, if it's OK,

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