Hello and welcome to Airing Pain, a programme brought to you by Pain Concern, a UK-based charity working to help, support and inform people living with pain and healthcare professionals. This edition's been funded by a grant from the Scottish Government. The British Pain Society defines chronic pain as continuous long-term pain of more than 12 weeks, or after the time that healing would have been thought to have occurred in pain after trauma or surgery. Almost 10 million of us in Britain alone have it. Listeners to these airing pain programmes will know that many different healthcare professionals, including doctors, nurses, psychologists, physiotherapists and occupational therapists, all play a part in effective pain management.
Whilst this team list is by no means comprehensive, there is one notable omission, and that's the patient. OK, we may not be health professionals, but we are experts. Nobody understands our pain like we do, and our role in managing our own pain, self-management, is key to a better life. So in this edition of Erring Pain, I want to explore that concept of self-management with an in-depth look at what's widely regarded in professional and patient circles as an essential guide to self-management. It's the Pain Toolkit.
What started some 10 years ago as a simple information booklet with handy tips and skills in self-management has grown into a multimedia online resource. Its developer and driving force is Pete Moore, who used what he'd learnt on pain management programmes, along with other skills picked up along the way to manage his own persistent pain, to share with the rest of us. In recognition of his continuing work, Pain UK, the British Pain Society and the Chronic Pain Policy Coalition named him their Pain Champion of 2014 at an awards ceremony in the House of Lords. And following that award, I caught up with Pete at the British Pain Society's annual scientific meeting in Manchester. You know, once you've had pain for a number of months or years, you get stuck.
you lose your confidence and you've just really done what to do with yourself. And sometimes you hear that phrase from the GP that says, well, you'll have to learn to live with it. But, you know, where it starts, like saying to someone, look, you need to drive a car, but they don't really tell you where to go and get the lessons from them, you know. So really, the pain toolkit really is just a, for a person with pain, it's really a simple booklet, 24 pages, just to really kickstart them, to get them interested in actually self-managing their pain themselves. What the healthcare professionals tell me, what they like about it, is that it helps them to start that conversation with their patient, to actually get interested in self-managing.
I think we've got to that point really now with pain that it's always been the poor relation to healthcare. It's very poorly resourced. And as I'm slowly learning, I've been asking on Twitter and a few academic organisations that pain self-management isn't actually taught when a doctor's learning to become a doctor or when a physio's learning to be a physio or an OT becoming an OT. The thing is, you used expression... you'll have to learn to live with it. Well, that can be taken as a put-down statement. Well, just get on with it, learn to live with it. Well, actually, you do have to learn to live with it. You have to learn to live with it, but there needs to be a starting point. There needs to be some skills. And that's why I'm out talking to GPs. I would never be a GP. I think it's such a tough job. But I think it's come a point where they can't keep writing out prescriptions for medication. They can't keep signposting people to other services. From my personal opinion, and from what I can see in talking to many GPs, is that they need some extra skills built into them when they're learning to become GPs, to have that conversation with the patient about becoming self-managers.
And I think when healthcare professionals are taught in their medical schools, they're taught around the medical model. Funny enough, I saw the other night on Twitter, patients need to be educated to self-manage their pain. Well, the medical model isn't really education. So perhaps then what the medical people need to realise or think about is actually involve educational models into their learning. Well, OK, we're at the British Pain Society annual scientific meeting. You're not a health professional, but you're here talking to people. What can you tell them, all these worthy doctors who've come here this week, what can you tell them about managing their patients?
I think really the main message I always give to them is to have that conversation with the patient, because I think they're so used to reaching for the treatment options. But really, when a person's got pain, long-term pain, persistent pain, they need some strategies to help them with their pain. So it really is about encouraging them to have that conversation with the patient, saying, look, we seem to be a bit stuck here with the pain, but you've probably got other concerns going on here. So I think one of the things with a lot of pain healthcare professionals, they're trained to treat their pain. But when you've had pain for a number of years, or months or years, you've got bigger problems. You can't sleep.
You've got family worries, you've got work problems, you've got money worries, probably getting in a bit of low mood, probably depression, you know, feeling down. These problems will actually start to supersede the actual pain itself. So really, it's when a healthcare professional sees the patient, they say, look, we've got in a persistent pain cycle, it's on the page 3 in the pain toolkit. Look at the top bit. Look, this is the main problem if you're in pain. But you're telling me here that you can't sleep, you've got money worries, you're not active enough and stuff like that, and you've got relationship problems and whatnot. We can't really do much about the pain at the moment, but what can we do about sleeping problems, about perhaps relationship problems, about work problems? Let's have a look at that and see what we can do with that. Now, you've just been showing me your new toy.
And it's a spanking brand new, well, looks well used now, actually, tablet. And this one happens to be made by Apple. So it's an iPad. And you've been showing me your pain toolkit on that. Ten years on, this started in 2004. This is how people can access it. It's about moving with the times, really. I mean, we've got the pain toolkit booklet, which is in a paper form. But when I talk to younger people, when I say, how do you learn your information? They all say, tablet, smartphones, YouTube, the internet. We have to start thinking about, well, producing stuff that people are actually going to want to see. Go on, show me, come on. Just wait me, I need to buy one of these. Okay, there you go.
Would you like me to play some of it? Go on then. I'll tell you what I'll do. I'll play the one where it talks about pain toolkit. I was working in Europe last year at the Epic Pain Conference and also at the Epic Pain School in Nuremberg. And all it is is a very simple movie, which is sort of just snapshots of really of what all the things I've been doing. People with pain, you know, Paul, we're visual learners. When you've got pain, you know, continual pain, your attention span is quite low. So I think when I've been talking to people over the years, and especially for me when I have my pain, I've got the attention span really to think about sitting there and reading things. But this is the technology that people can really access and find.
advice and help well if you tap into searching i'm going to use google for an example if you tap in the word pain how many websites will come up we're talking about one and a half million So where do you start? You know, I've got this pain problem, what do I do? So it's about looking at trusted sites. So the ones we have on the Pain Toolkit one, there's obviously the Pain Concern one, British Pain Society. We don't have any websites there that are promoting products or anything like that. So it's about using trusted sites. So for me as well, on YouTube, there's lots of information on there, visual information. That's why we've got a link on the Pain Toolkit, where people can look at short videos about self-management pain. And the website, it gets a lot of traffic, and we get on average about 27,000 visits a week, something like that.
on the website, but it ain't just the UK. We get a lot of visitors from overseas, from Australia and New Zealand, and now a lot from Canada and the US. I always remember Rod Stewart from years ago. He did an album back in the 70s. I don't know if you might remember it, Paul. It was called Every Picture Tells a Story. And to me, it's about using pictures, about using illustrations about how people can learn how to self-manage their pain. I mean, we know how cavemen lived from years ago. They didn't leave a post-it note on the side of the cave, did they? They painted pictures of how they used to hunt and whatever, and we understand how they did those sorts of things. So for me, it's about using a mixture of visual.
using a bit of text etc when i talk to healthcare professionals i always say to them rather than saying to the patient well here's a leaflet here's a youtube clip here's that actually ask the patient how do you learn you learn by reading you learn by watching you learn by practice you have a mixture of all three and then they get in the gp or the healthcare professional comes up with the resources that the patient will need so that they can move on but they've got to work with them and have an action plan so it's not all down what the patient's going to be doing but it's not all down to what the healthcare professional is going to be doing it's about how they work together as a team look the arsenal We won last night, 3-0 against Newcastle at home. Why did they win? Because they played together as a team. Watching Newcastle, I think they wasn't playing as a team. I had to get the Arsenal plug in, didn't I? I'll tell you what, the other good resource for listeners is Twitter. Because for me, I started on Twitter just over about 18 months ago, I suppose. A year, 18 months. And I get the people on there saying, oh, I'm just off at the station. I don't really follow those sort of people. But what I do, I follow people who are...
I suppose educationist, really. And I've learned so much in pain management just by following people on Twitter, like physios and GP types and whatnot, and other people with pain themselves. I've learned so much from other people, and I really encourage other people to go onto Twitter. But you are an expert patient. You do have to be careful about advice you accept from the internet. I think you have to make informed decisions about things. If you see something on Twitter, right, and if you're not sure about it, guess what, go and see your GP or your healthcare professional and say, look, I've seen this on the internet. What do you think? Do you think it's useful?
with the toolkit a lot of people saying it's well this is okay for adults but what about younger people with pain i bumped into a really nice clinical psychologist called jess and we adapted the pain toolkit into a younger version called my pain toolkit great ormond street hospital they actually use it now and other pediatric services and um in the last couple of weeks i bumped into a lady in australia in brisbane and she promotes asthma self-management especially for kids with school you know i used to have asthma when i was a kid anyway so i said so i just emailed her a copy of the my pain toolkit i said you think this could be adapted for young people with asthma she said yeah We sent off the first draft on Monday of a version called Molly Asthma Toolkit to some healthcare bots in Australia and in the UK who work with younger people with asthma as a draft. So we just sent off to get an opinion from them really, you know. But then people are saying, well, perhaps the toolkit could be adapted for many other health conditions. Let me just open up your iPad again and just have a look at your pain toolkit. Okay, let me just go to the site.
The address is paintoolkit.org, and you can listen to a podcast. There's some lovely little cartoons on it. You talk about being caveman, a 21st century caveman. There are the drawings, and it tells you exactly where to go. It's fun to read, but it is not patronising.
This is, I think, one of the most ways it looks at links. It's called the persistent pain cycle. It's very visual. So people, like a cycle, see at the top of the cycle, you've got persistent pain, which leads on to becoming less active, loss of fitness. You start writing can't-do lists, sleep problems, stress and anxiety. And when I show this to people, they say, God, this is me. Exactly. They can recognise themselves. These are the problems that they have. Exactly. And there is no rocket science here. It all makes such common sense. We were talking about starting with pain, getting more and more depressed, while the depression feeds into the pain, the more pain feeds back into the depression, and it becomes a vicious circle, a spiral.
that has to be stopped. I always say to people, I say, what's the difference between that cycle and the M25? And they laugh as well. I say, well, at least you can get off the M25. When you're on that pain cycle, you're trapped. You just go round and round and round and round. And it's one of them sites where it's great for smartphones and tablets. So down the left-hand side, there are Tool 1, Tool 2, down to Tool 12. Is this a systematic programme that people could go through? It can be systematic, but I don't want to be that regimental, really. I think people have to learn in their own funny little way. But I always say Tool 1 is acceptance. I'm just going to click on it so it comes up. Tool 1 is accept that you have persistent pain and begin to move on. People say to me, which is the most important tool? And I really say it's Tool 1, because if you don't really get that, you ain't really going to go very far.
And that's exactly what, you know, some people say, learn to live with it. Well, yes, learn to live with it, but it's not a punishment, it's a way ahead. No, no, that's right, yeah, yeah, yeah, yeah. But we've got to accept it. Look, I mean, this is radio, but when people see me on the website, you'll see I haven't got any hair. I'm a slaphead. Now, the thing is, by the best way in the world, I can put a hat on, I can put a wig on, but at the end of the day, I've got to accept that I've got no hair on my head. And the thing is, as well, I have to move on from that, you know? So the thing is, and that's for me, when I didn't accept my pain, I was a doctor shopper, I was a therapy shopper, and I was going around looking for someone to fix me. And then I had to realise that there's
So I'll say to people, look in the mirror. That's the person that's going to help you self-manage your pain, really. But the rest of the tools, really, don't have to be systematic. Tool two is about getting involved, start building a support team. Tool three is pacing yourself. You know what we're really poor at pacing ourselves. What we do with people with pain is we use pain as a measurement, really, our guide. So we'll do an activity, and then when the pain starts or increases, we think, oh, I better stop now. Well, that's not pain management. That's, again, you're letting the pain manager tell you when to stop and start.
People say, well, I don't really get that. I say, well, if you had a car, do you wait until you're completely out of fuel before you look around for a garage? They say, no. I say, what do you do? They say, I'll look for somewhere to refuel. Well, that's pacing. What you're doing, you're stopping before you think you need to.
But what we do is we just carry on, carry on, carry on until the pain's so bad and we have to stop. The really difficult thing about pacing that I find is not stopping when you've done too much, but it's not starting when you feel well. You're not trying to get it all done. Yeah, we're all or nothing people. As they all say in the toolkit, how to treat an elephant, one bite at a time. So we've got tool four is prioritise and plan your days. Tool five, setting goals and action plans. Tool six is being patient with yourself. You know, we're not very patient with ourselves.
You know, the old saying, God, give me patience, don't hurry up about it. Oh, we're never patient people. Exactly. We want to be out of pain now. Learn relaxation. A relaxed muscle feels less pain than a tense one.
It's all late. It's stretching, exercising. Do you know what, Paul? A lot of people with pain, we fear exercise or stretching. In the old days, when we start to get active and everything, our pain levels increase. But look at it this way. If you haven't opened up a door for a number of months or years in some cases, it's going to creak. It's the same thing with our body. When we start to stretch and exercise, our pain levels can go up. Trust me, they fall off a cliff. They really go down. What do cats and dogs do when they wake up in the morning? Stretch. Yeah, so when your dog got up and stretched, where did you take him to learn that? Back to the time when there were lions and wolves chasing him. Exactly. It's in our blueprint. Because they learned that if they wasn't stretched, there could be someone's breakfast.
So, in other words, what they're doing here, keeping their muscles stretched in case they have to get out of the situation. You see, the good thing about something like this is that I know all this. My mum said I was a very intelligent person. Other people have said, perhaps I'm not as bright as I thought, and perhaps I'm not. Because you're talking to me about stretching and aching like that. Now, if you've noticed, I've started stretching and massaging my neck. Now, why did it take you to tell me to do that for me to do it? And this is why something like this, to remind you of all those things, is ideal. Do you need to be reminded to brush in ashes?
No, I don't, because my teeth will fall out, or I will have fillings if I don't. But you do it because it's become a vitriol, it's become a routine. And stretching and exercising needs to become a routine. And you don't think about it, oh, I need to remind yourself to stretch. You'll do it. I got up this morning, I stayed over here in Manchester overnight, and again, I didn't think about, oh, I've got to do something, I've got to remind myself to stretch. I get out of bed, put a kettle on, make myself two mugs of hot lemon, and then I start doing my stretching. So I'm preparing my body for action for the day. It's that mental change, isn't it, that learning to live with it, yes, but making it part of your life. Pain is now part of your life.
You know, always like an unwanted visitor in your life. You know, you're going along in a bus of life and then you pull over at a bus stop and this bully gets onto the bus and starts causing havoc and stuff like that. And you think to yourself, and the bully says, I'm not getting off this bus. Well, where do you want to stick this bully on the bus? Like, you know, and everybody says, well, we need to stick him in the back of it out of harm's way. Like, you know, but don't let him drive the bus sort of thing, you know. So it's a little bit like that where, you know, it's about something comes into your life. You think it's always going to be part of your life. So it's learning to live how you live with that.
It's all nine. It's keeping a diary, tracking your progress. And the reason why I put this one in about keeping a diary, a lot of healthcare professionals saying, do they need to keep a diary? Is it reinforcing the pain and all that? But you know what? I always remember a story years ago about a bloke who was walking up, you know, in the streets in San Francisco, where they're really steep, and he's walking up the hill, and he looks up, and he thinks, oh, my God, look how far I've got to walk. But then he looks around, and then he sees how far he's come.
And sometimes, you know, it's good to reflect back on how well you've done in your journey like, you know. No, I kept a diary when I was at a particularly low point. But as soon as I started coming out of that, I stopped keeping the diary. Maybe I ought to carry on with it. No, I don't know. It's up to you. I don't keep a diary anymore. In the early days, I used to. Pay management, you know, Paul, is a bridge to normal living. You know, if you're a diary writer, fantastic. But, you know, it's about moving on in life, you know, getting on with life, etc.
We're looking at tool 10 now, and this is about having a setback plan. Because we're overachievers, in other words, we do more than we have to, we'll probably overdo it, like, you know, a setback, our pain will increase. So it's not having a spare wheel in a car, really, so having a backup plan, you know, what can I do to get me back on the track, like, you know. And what do you do? What are your backup plan? What I tend to do is I cut down the activities. Funny enough, I went out my pushbike on Sunday, and I think I overdid it a little bit, and I hit a few bumps, and it really disturbed me back, like, you know.
So I sat back playing. It was when I'd come back off my ride. I could feel myself, my lower back's a bit tight. So what I just did, I did lay down for a little bit, done some stretching, put some ice on it, worked a treat, hunky-dory, back on track again. So it's about getting in fast, do stretch it, cut down activities, don't do nothing silly. Just be mindful of yourself, really. Just get to know what you're doing. So we're on tool 10. Let's go to tool 11. What's tool 11? Oh, my favourite tool here because it's got a picture of the cartoon of the Arsenal. It comes back to that one about teamwork and action planning. You've got to work as a team with your healthcare professional. This isn't a one-man show.
There's a lady, funnily enough, I'm helping Dan in Kent in the moment, and she won't work with a healthcare professional. Do you know what? She's really finding it tough. It's only a one-man show. You've got to work with a healthcare professional. It's teamwork. But he or she, the healthcare professional, has to work with you as well. The only sad bit, Paul, is that they're not really skilled up in it. This is how crazy it is. Say, for example, you went to learn to drive, and you went to sit beside someone who turned up at your house, who can't drive, knew a little bit about driving, but wasn't a qualified instructor. Would you want to take lessons from them? No.
So teamwork is essential. You've got to work as a team with not only your healthcare professional, but also your work colleagues and also your friends, friends and family. And then we come up to tool 12, which is about putting them all into action, really. Keeping it up. Perseverance. One of the things as well a lot of people think with pain self-management is dull and boring. Well, it's only dull and boring because you might get that way.
It's about doing fun things, you know. Self-management can be like learning to do a sport. And I'm not talking about high-impact sports. And in fact, on Twitter, just before Christmas, I come across this gardening group over in South London, where they use gardening as a form of exercise, stretching, exercising. So they've all got their own little reluctance, but they all meet up and do some stretching. And it's not all older people like us. It's about, they do younger people as well. They do the stretching, but they do a little bit, then take a break, do a little bit, take a break. Over in Penj, near Crystal Palace. If you look them up on Twitter, I think they've got their own little website. They do gardening, but they talk about the importance of stretching and exercising as well.
There's walking groups now. I remember a healthcare professional telling me one of the things that come out of research is how pain can isolate people, where you've gone from that can-do person to the can't-do person, and you end up becoming a bit recluse. When you've tried to do something, your pain's increased, so you think, well, I can't do that again. And you become sort of doing social events, et cetera. There's a girl down in Essex, she's terrified sometimes, she's got to do this wedding.
But when I talked it through with her, she was worried about the bed that there was going to be at the hotel. I said, well, first off, what about phoning up the hotel and make sure that you've got a firm bed that you want? And they said, well, they do that. I said, you're a guest. Their job is to have a good customer experience. And the other thing as well, rather than go down there on the day, is actually go down there the day before. So you go down there, stop over, so you've rested, then you do your mate's wedding, then stay over again, and then come back the following day. And that's a great action plan.
It is, and that isolation, again, is going back to that circle of pain we had. Everything feeding into each other. But there are ways around it, as you've said. Have an action plan. Listen, Paul, we all get problems in life, mate. But when you've got pain, the everyday problem becomes magnified.
So it's about using problem-solving skills. That's one of the things we do in the pain toolkit workshops, the ones we run for patient groups and healthcare professionals, just providing a problem-solving formula, really. It's like a recipe, I call it, you know, an ad to get over problems, like, you know. And I think really just keep asking other people. You know, one of the best bit of advice or suggestion that's even given to me years ago when I first started out in pain management, they said, Pete, take cotton wool out of your ear rolls and shove it in your mouth. What they meant by that was I've got to stop talking and start listening. And when I start to listen, I start to learn. But when you're talking, you're not learning.
We've talked about health professionals maybe not having the skills, maybe the will to listen. But in all fairness, we are at the British Pain Society annual scientific meeting. You're talking with health professionals here. And more than that, you are welcomed here by them. And you're the 2014 pain champion. So they obviously do value what the patient has to say. Well, I got a phone call last November to say that I've been nominated to this. I couldn't believe it. I've never really looked around for any recognition or accolades or anything. I'm not that sort of guy. Because I still do what I do, really. I'm always...
I've been where lots of people are, and all I really want to do, really, is help people start that journey back, really, you know. But, yeah, I went up to the House of Lords a few weeks ago, I think, accepted the award by Linda Reardon. She's an MP. She's passionate about pain management. But the work goes on, you know. I'll try and use the title that I've got to try and promote. I've got this petition, actually, an e-petition of some of the government websites to get more pain self-management in the community, get it out of the hospitals, get it into the community, but also have good pain self-management information on the internet. And paintoolkit.org.
It's a good way of doing that. It's a start, yeah, but there's also the other ones, I mean, the Pankinstone website, where you can subscribe now to the magazine online. I mean, how fantastic is that? You know, you've got to sit on a train, and everybody's looking at their phone. They don't bother looking out the window anymore. What about this lady that's lived next door to me, Lisa? She's an elderly lady with Parkinson's. And she saw I had an iPad. I bought this last year. And she said, oh, that looks really nice. Anyway, she went and got one. She's 72 years old, and she loves it. Keeps her mind active. She's Danish by birth, and I showed her how to look at Google Earth. She showed me where she was brought up in Denmark, and et cetera. But she uses it to keep in contact now with her family. Then I bumped into a couple of elderly ladies down by the river where I live.
And she said, oh, we've got laptops. We couldn't do it without them. And I said, don't mind me asking you young ladies, but how old are you? She said, well, we're in our 80s. And I said, what do you like about using the tablets and the laptops? She said, oh, we can buy things. It keeps us social. We feel like we're in touch with the world.
Once again, it's painconcern.org.uk. I offer these words of caution in every edition of Erring Pain, that whilst we believe the information and opinions on Erring Pain are accurate and sound, based on the best judgements available, you should always consult your health professional on any matter relating to your health and wellbeing. He or she is the only person who knows you and your circumstances, and therefore the appropriate action to take on your behalf. Well, the delegates at the British Pain Society Annual Scientific Meeting are coming back to be refuelled after their talk.
Ten years ago, the Pain Toolkit was pen and paper. 2014, it's on the internet. 2024. I'll tell you our next project really is we're adapting our site now for other organisations. We're going to be doing one for Manchester soon, so it'll be paintoolkit.org forward slash Manchester. But also we're building three apps. We're building a beginners app for Pain Toolkit and then one for people who want to progress. People can track their progress using something called My Pain Toolkit and there'll be another one there, which is a CBT-led one, where they can learn more information about pain management. Thank you very much. Thanks for the interview, Paul. It was great.