Pete Moore's Journey: From Chronic Pain to Self-Management Pioneer

Mark Kargela: [00:01:34] Welcome to the podcast, Pete.

Pete Moore: Well, uh, hi there, Mark, and thanks very much for inviting me, really. I'm really, uh, I'm really digging the podcast that, uh, that you've been doing of late, so, uh, I'm, uh, feel, uh, quite honoured, really, to be, uh, invited, so, yeah. In, I'm, I'm looking forward to it.

Mark Kargela: Good, good. Yeah. And it's great to have you. I, we met finally in person. I had kind of, we had interacted online and, and digitally via, you know, Twitter now X, whatever we're calling it and, and various social media, um, platforms just with your pain toolkit. And we'll talk about that, but that, that was a, Um, you've probably been on the forefront of the patient front as far as somebody who's really advocating for the patient, uh, perspective being in those shoes.

And we'll talk a little bit about that. Um, and then we finally got to meet in person. I think it was 2018 at the international association for study of pains conference worldwide conference in Boston, which was great to finally put a name. A real person to the digital, uh, you know, version of yourself. So it was good to meet you.

Um, Pete, I'd love if you could kind of introduce yourself for the audience. A lot of folks listening [00:02:34] probably know of you, but maybe you could give folks a little bit of background to yourself and kind of the journey to where you are today.

Pete Moore: Well, uh, my, uh, journey's pretty much like most people with, uh, limb pain. It was, uh, I've got, uh, all start back in the, uh, I, I, I'd had back pain for quite a few years really. And then I normally managed it through, uh, over the counter medication and stuff like that. And, uh, it sort of got bow on its own. But, uh, I've got, uh, uh, an episode of it in, uh, I think it's backend of two, uh, backend of what, uh, 1992.

And, uh, I couldn't get out of bed one day, like, you know, and, uh, and I, I don't know what happened, like, you know, everything I tried to do, it was, you know, it was painful sort of thing. So, but like, like most people, really, I got stuck in the medical model of care, you know, where you, You know, taking, you know, go and see the GP and they give you a load, you know, a load of pills, anti inflammatories and whatnot.

And, uh, then I sort of become like, [00:03:34] I call it, uh, become a tourist in the healthcare system in our NHS. I was sort of touring around the, uh, physio department, MRI department, x ray department, or, uh, some, some sort of sound, uh, I can't think of the name of it now, sound department, whatever. But anyway, I was just whizzing around all the time and I was stuck in there for quite a few years.

And I knew, uh, there had to be another way of, uh, managing or managing his pain. Uh, other than taking pills and seeing any, any therapist really, because I was, I was also se seeking help through private healthcare. Um, anybody, anybody with any store knowledge after their name, I, I was there, you know, so I, um, I think it's back end of, uh.

93. I was, I knew there had to be something else and lucky enough that I'd been involved with another health condition where I set up support groups, etc. And so I thought, I thought, well, I'll start to, you know, you know, what I learned from other people really. So I [00:04:34] started up a back pain support group in, um, I think it's back in the 93.

And, uh, one of our early, uh, not early. Uh, one of our speakers the following year, um, early part of 94 was a lady called Amanda Williams, and she was the, uh, lead on the clinical psychology of, uh, at the input pain management program in London. And it's, and all the things she was talking about, like how to pace yourself and graded activity and da, da, da, da.

And I thought, God, my God, this is it. This is, this is what I've been waiting for to hear, you know, because up until then, I was just. You know, I know I've already ended up on an operating table or something, you know, but life is pretty pretty naff anyway then. So, um, anyway, I applied to go on the program and like anything in the NHS, 96.

I was on the waiting list, but uh, between there and then, uh, between then and uh, getting on the program, uh, 94.[00:05:34]

I, uh, if you had said to me, mark, how much pain are you today, Pete? Between one and 10? I, oh mate, it was a hundred thousand, you know, and, um, that night I was, I was, I was so much, I still couldn't see any future. And I started, I was really getting depressed as well with all the other stuff. So I, um, I did consider any my life really, to be honest with you, because I just couldn't see any future for myself.

I did some stretching and, uh, and stuff like that and, uh, it went on for a little bit and the next day when I didn't have any whiskers then and, uh, I was having a shave and I was looking at myself in the mirror and I was thinking you're the dude that's going to get you out of this mess like, you know, and it's, I think in a way it's like my props are rock bottom, you know, and I just, I just said that To, uh, to get a date to go on the program.

But, um, anyway, I got on the program in 96, in July of 96. And on that program, it gave me, not only gave me the, uh, tools and skills to manage my pain, [00:06:34] but it gave me the confidence like, you know, I think that's what happens with, with pain. It, the stricture, stricture naked of your confidence, you know, cause you've gone from a, being a can do person to being a can't do person.

And, uh. Anyway, so anyway, so about, um, you know, so I went on the two week course, et cetera. And, uh, went home and practiced it. And, uh, I think about a year later I was able to get, you know, uh, I didn't have to take any more pills really, like, you know. And since then, since 97, I've not had to take any pain medication at all, like, you know.

And, uh, because... So the skills I learned then were live lung skills, it wasn't just to sort of deal with, you know, pain, because as I become an older dude, like, you know, I've gathered, you know, as you get a bit older yourself, but you start collecting other, other problems like, you know, so arthritis come into my life and then in recent years prostate cancer, [00:07:34] so.

But I say all those skills I learned in self management skills in 96 have all been transferable throughout my life really, so when other things have come along, you know, so, uh, it's been a, it's been an interesting journey, but, uh, and I just, um, I see myself as a little bit of a A pain traffic cop really like, you know, so instead of as I've learned to manage my pain, I've sort of stuck around and I felt there was a need for, uh, for me to, uh, help other people like, you know, so, and that's what's, you know, really, that's what I've done for the last 20, 20 odd years now.

You're trying to help other people, um, who get stuck like me, you know, so, so they can see there is a, there is a, uh, you know, you get green lights, you know, because when you're living with pain like you get amber, red lights all the time, you know, and you're, you're looking, you're looking for ways out, for ways out all the time, you know, and, um, But there, you know, there is a way out and I'm, I suppose I'm living proof there [00:08:34] is a, a way out because of, of what, you know, uh, uh, you know, what I'm doing.

Like, you know, so I, you know, it, it, so I, I think self-management sort of frees me up to get on with my life, you know, and as I call it, get me, get me self, uh, back on track and. Back in the driving seat, really, you know, so that's that's really my journey in a nutshell. So, you know, since 96, 97, I've been having a ball, you know, and also helping people and healthcare professionals as well, because I think, um, as I discovered, you guys struggle as well, you know, because when you go to, as I found out, you know, quite a few years ago that when you Um, Uh, go to your respective medical schools, whether it be a medical or a physio or other that, uh, self management really isn't your, in your curriculum like, you know, so, so when you come out, it's one Canadian doctor told me a few years ago, you know, self management [00:09:34] site that is inspected.

He, uh, been expected of him to learn on a job, like, you know, well, you know, the, the numbers of people that we're paying now isn't going down. I mean, the International Associations of Study of Pain, as you mentioned, I think they quote 25 people around the world now are living with persistent pain, so. The numbers ain't going down and, um, I mean, when I first started off, uh, they were, you know, I think the, uh, the health people here in England were saying that, uh, there was 7.

9 people, uh, people living with pain. the uh,

One of the GPs there, he was on the, you know, speaking alongside me. He said, there's 28 million people now. And I went, what, what happened there? You know, cause it went up from 14 million. And, you know, for some reason, like five years, it went up to, it doubled like, you know, they're still growing [00:10:34] 28 million now.

So that's why, you know, I found the importance that to, to skill, uh, healthcare professional, uh, healthcare professionals are given some self management skills so that they can support their patients better, like, you know, and, um, In recent, uh, recent weeks or months now, I've been working with some healthcare professionals on, uh, designing, like, a learning platform for healthcare professionals, like, you know, hopefully I should be going live at either the back end of this year or next year, like, you know, but it's something that, you know, you can learn about self management at your own pace and, uh, stuff like that, you know.

Mark Kargela: Man, the story you, you tell there, Pete, is one that I've unfortunately heard similarities with other folks, but you know, you started way back in 1993. Um, you know, with this journey of pain and then eventually getting to where you got in the program. You also relate a lot of [00:11:34] frustrations that we see, too, in the U.

S., you know, different healthcare systems, not maybe the NHS, but folks waiting, uh, you know, forever to get care, sometimes going significant periods of time without care. Um, you know, our friend, Joletta Belton, relates, you know, a year or so of when she was stuck in our work compensation system, which is not a good place for for folks to recover from a persistent pain issue, um, as she would definitely testify to.

Um, so your journey, you know, took you through some rough patches. I mean, you've obviously discussed even to the point of suicidal thoughts and different things of that and came out the other end, really, you know, doing some great things to help others, you know, kind of navigate a similar situation.

Unfortunately, that is all too common as you, pointed out with the statistics that we're seeing with pain. How did the pain toolkit come about? You've talked a little bit about a bit of your work and some of the platforms that you're in. We'll talk more about those, but I'd love to kind of hear how that kind of all came to be and how it's kind of developed over the years.

Pete Moore: Yeah, well, that's, uh, the pain tool kit coming around, like most things, a little bit by, uh, chance, really. [00:12:34] I was, um... I was asked to, there was a German organization that I was at, they asked me to go to have a chat with them and, uh, it's a medical organization and, uh, they, they were writing a, uh, pain management course, uh, for, um, for doctors and, uh, they thought it'd be useful to see if they, the doctors on the course, they heard about.

For her to actually from a patient, so I like to write, I mean, bear in mind, you know, this is, uh, the late 90s, I think, uh, 98, 99, you know, I mean, technology then I was, I'm still learning about typing and stuff. So, but I asked me to, uh, to write a module, a learning module, uh, for the doctors on this cause it was going to be like an online course.

So, um, but while I was doing that, I went, you know. Before I got into all this stuff, back in the day, I was, uh, I was being a painter decorating on a driving instructor, but, um, [00:13:34] and I just thought, you know, people with, uh, people, people with pain is like, like me when I was, uh, when I was a painter decorator, I'd like a, uh, a toolkit, you know, we're not, not like a bag with different tools in it sort of thing, like, you know, for different things like a scraper and a fillet knife and, Screwdrivers and whatnot, you know, paintbrushes, rollers, and I thought, well, uh, people with pain, we need a selection of, uh, tools really to, to get us back on track sort of thing.

So I started off writing stuff and just do a bit of free thinking, putting them down and showing them to people and saying, look, you know, what do you think to this? And, um, I think I've come up with about 8, the first lot was 8, 8 tools and then some said, some said no, well don't forget you need to include this, blah, blah, blah.

Anyway, uh, long story short, um, we got to, uh, I've got the 12 tools and, you know, like any tool kit, you don't want too many tools because you've got to, you've got to haul it around, you know. And I, I, and I wanted to keep it simple, so. When I started to write [00:14:34] the, uh, like the talk kit, it was, it was, well, I'm not a medical person, so I couldn't write in any, any medical jargon, but I wanted to emphasize that it was people could understand it, it was in, you know, easy to understand, uh, terminology sort of thing.

So anyway, um, so I put these things together and I've got it, uh, printed up. You know, I didn't get any support when he talked, so I could only afford to get a couple of, you know, about, 20, 20 talkies, uh, printed off sort of thing, you know, anyway, then, um, lucky enough, I was at a meeting in Cambridge and, uh, Cambridgeshire, and I met a lot, uh, just by chance, there was a lady there from the Department of Health, Who, um, who said, uh, is doing, uh, doing a talk to, uh, healthcare organizations in, in the county, et cetera.

And, uh, and I, I just took a chance and I went up to her at the end and I said, Oh, I've, I've written this, would you, you know, have you seen, oh, she said, I've heard, I've heard about this. She [00:15:34] said, uh, oh, well, I think it's really good. And she said, well, I'll get, where can I get them from? I said, well, from me, but I can't afford to print them off.

She said, oh, don't worry, we'll do that. So, she said to me, uh, how many, uh, and they was going to print them off and distribute them for me. So, uh, she said, how many do you need? I said, oh, I don't know, 5, 000 would be a, that should be alright. And, um, you know, it kept me going for a couple of years. Anyway, long story short, again, within the first year, they...

It was just so popular that, um, 140, 000 copies were printed off. And then, the next year, down another 140, 000. And, um, and then, like most things come to an end, the financial problems kicked in with the Department of Health and that. I think they, in all, I think they printed off about, um, about a quarter of a million.

And, uh, So really, that's [00:16:34] how the pain talk got really popular and then, um, again I was asked to go out to Germany to talk to the same company and there was a pain doctor there, a good mate of mine now, Ryan Arsittl, Dr. Ryan Arsittl from London, near Nuremberg, and he was, a pain and, uh,

Anyway, I, I was talking to him, you know, telling him, and I thought to you know, so anyway, I said, do you like football? And he said, yeah, well, yeah, and, uh, anyway, we got, we got pretty, pretty, uh, good mates, et cetera, and he liked the toolkit, you know, and, uh, he said, um, he said, uh, he got his daughter, well, don't be known to his daughter to translate into Germany, and then he sent it off to his buddy up in Switzerland to get it printed off, and, um, But in Switzerland, you can't just print off in one language you, but because it's a multilingual in Italian and [00:17:34] French so that a print off, uh, German and French in Italian versions of it.

And then within that organization, they, uh, the other guys at their local offices around Spain or whatever, they, uh, they got it printed off in their languages. So, you know, so I think it's, I can't remember now. So I think, I think it's 14 different languages. But anyway, that's. Yeah, that's how the pain's all get sort of kicked off, etc.

And then, um, and what I've been doing of late, I've actually done another version of it this year. Um, concentrating on, uh, because over the last sort of 15 or so years, Mark, I've been asking other self managers like myself that I've bumped into, what are the key things that keep you upright? What are the main things that keep you on track, got you on track, etc.

And, um, So I've been, I've started, I've written another, developed another pain toolkit around [00:18:34] the five key skills. So it's like, uh, you know, pacing, sort of setting goals, action plans, pacing their daily activities, have a setback plan, uh, meaningful movement and stuff like that, really. And, uh, to my surprise, um, I've started, uh, putting them out.

And again, people love it, you know, because it's, it's just simple, because it's all they've got to do is think about five things. I think sometimes, I may have thought with the 12 toolkit, um, there may have been too many, it may be a bit too overwhelming. So, uh, but there I simplified it and using just five key skills.

Uh, you know, people really like it and it's, it's allowed me to tweak it for lots of different people. Uh, like I've just been, uh, a long, uh, published one a day of that for people who are stuck on opioids, you know, medications, but want to come off of it, but they don't, you know, um, Well, if I let go [00:19:34] of taking the pills, what do I do in the meantime sort of thing?

So I've adapted it for people who were sort of for tapering, uh, ones for people who've had um, I think I've done about another five versions actually. So the ones I think are really cool, the people who've had cancer treatment, like radiotherapy, chemo, they go into remission, but they're left with painful joints, etc.

So I've adapted it. Uh, for, for those guys like, you know, and there's people, friends of the gardeners, people with arthritis, uh, chronic, chronic pains, uh, chronic regional pain syndrome and fibromyalgia and stuff like that. So it's, it's allowed me to adapt it for, because sometimes people like. I don't want to, sounds a bit, uh, their labels like, you know, well, I've got fibromyalgia, I've got arthritis, like, you know,

and sometimes when you pain, it's been a bit too generalistic, but people like to thinking, well, this is [00:20:34] just for me, this is right for me, uh, like a gardening one, you know, like I'll get pain when I'm gardening, you know, how can I get around that sort of thing, you know, so, um, Yeah. So the, the, the, the pain toolkit kit is sort of, it is, it is evolving into different things now, like, you know, with and other things.

Uh, I mean, they look like, they're, like the digital booklets. I've, I think a couple of years ago went green and instead of print printing things off, 'cause the printing costs were bonkers anyway, but I was trying to think of the trees, you know, so everything's pretty much digital now. Um, and iBook and Google.

Mark Kargela: Yeah, that's uh, the digital medium definitely has helped with distribution and you know the information at our fingertips and being able to have that but you know to think 5000 was your estimate on the early front and then gosh, you're probably I would I would probably guess you're probably touching on a million when you encounter digital thought process all the folks you're touching with that [00:21:34] information, which, you know, kudos to you because there's not enough.

I'm curious with your experience, because you've obviously interacted with a bunch of healthcare professionals of all different, you know, physios, chiros, all doctors, physicians, and now all the everything in between, what are some of the, like, key characteristics that you've seen in healthcare professionals to, to really get this stuff and to really, you know, Maybe let self management take hold because there's this discussion we've had on the podcast with various folks of like This pressure to be the hero of the story that some of these health care professionals I know I operated under it early in my career of like I mean I want to swoop into this person's life and and fix what's going on and and just be the hero of the story and Which goes against obviously self management and goes again I mean it can You know, obviously we're here to help and there's definitely things we can do to assist in the journey, but taking that hero role versus letting somebody Gain the skills to navigate the world outside of that clinic wall that they're encountering health care [00:22:34] professionals in I'm curious what you found is like characteristics of some professionals who better embrace You know this more modern understanding of pain and modern ways to help patients Succeed in their own self management strategies.

What have you seen?

Pete Moore: Yeah, I think, um, it's very funny when I, when I do talk to healthcare professionals. They sound a little bit like patients, you know, they're struggling like, you know, and I think, I think, you know, obviously they've become a healthcare professional because they want to help and support people. I think the main problem, uh, because as I said earlier on, as you're not, um, because you don't, you know, self management isn't, You know, including in the, you know, you're learning the curriculums at the, uh, respective medical schools.

I think you've got a good idea of what it is, but you're not sure of the process and, you know, of self management. And the thing is with, um, with self management is that [00:23:34] we're, we're the ones that have to do the work, the patients have to do the work. But I think sometimes you're a little bit too, um, paternalistic, is that the right word?

Um, and... It's I was liking it. Um, you know, say to healthcare professionals like, you know, do you drive a car? I mean, I don't know. I'll use you but Mark, do you drive a car?

Mark Kargela: I sure do.

Pete Moore: So when you say having driver lessons, whereabouts were you sitting? In a passenger seat or driving seat?

Mark Kargela: I was sitting in the driver's seat

Pete Moore: Well, why was she sitting in the driving seat?

Mark Kargela: Because that was the only way I was going to learn how to drive, not, not watching somebody else do it.

Pete Moore: Exactly. And it's the same thing with us, see. We, we, it, what happens is, see, we're, we're people, we're paying and, and in fact, long, others with long term conditions, when we go and see healthcare professionals sometimes, they, they take us out of the driving seat, put us in the passenger seat. Of course, we don't learn anything, do we?

You know, we just, they're there for the ride. And the thing is, if you keep, put us back in the driving [00:24:34] seat, Uh, then, then that's, that's how we're going to get on and move. And that's what the, so when I went on the pain management program, that's what they did. They put me back in a driver's seat so I can go on and, you know, learn, et cetera, like practice.

And the thing is, I don't think the other problem or challenge I think you have is that you don't think you've got time to do it within an appointment. And honestly, you do have time, like, you know, but you just. You know, you've not been shown how to do that. That's why, like on the workshops I run, you know, that's why I show people.

Um, because it, look, when they, um, I've got, I've got a, you know, a copy of the pain toolkit. And when, uh, people, and I've had, I always say to patient, uh, healthcare professionals how to use it. And it says it, and it's got all, I mean, the actual toolkit itself is like a naughty guide, you know. It's like a simple, simple guide, really.

So what they do is they look at the tools. And then talk it and they get the patient to choose one or [00:25:34] two, one or two of the tools that they want to learn, you know, it's given them most, most problems and they want to learn about. So then all the, all the healthcare professional would do is honing on those two or three, you know, in tools that the patient's selected.

See, we, you know, by the patient selecting it, see, in a way you, you're putting them back in the driving seat because they're doing something, you know, and self management isn't a certain, you know, way. You know, wait for you to do something to be self management is doing thing. They've got to do something and when they feel confident with that, those two are one or two tools, then they choose another one or two.

So they're the things that you can do in a time based appointment, you know? So, you do it. And I say, I, I'll do it funny on the Twitter this week or last week, I was asking people, what do you do for. People that are struggling, like, you know, and, uh, those, you know, for me, I, I see when I see, when I, when people contact me, you know, they ask, I ask straight, I'll ask them, well, what's your battle [00:26:34] plan?

'cause, you know, they, they've come out of this is like, you know, they tell me about, I mean, I can't, they ask me about medications. I, for legal reasons I can't talk about stuff or treatments. But straight away I would say to them, well, what do you think you need to be doing? What, what is your battle plan?

And they, and they go, oh, oh, uh, I don't know, because they said that they were sort of walking around in a fog, you know, and it's as soon as you, you know, by making them start thinking, well, you need a battle plan, because, you know, it's about moving on now, okay, you've got this pain problem, okay, let's look at some stuff there, what can you be doing?

And to get yourself better, because, you know, that was like me, because I, you know, that was, that was me, well, you know, for two or three years, walking around in a fog, waiting for something to fix me, you know, but when you've got long pain, longer than, uh, three months, then, you know, you know, then that's when all the other stuff kicks in, and that's why it's so important to get us, keep us in the driving seat from the get go, because once, you know, [00:27:34] You know yourself Mark, once people have had pain for three months or more, the other stuff stops kicking in, sleep problems, money worries, um, loneliness, isolation and stuff like that.

And then, do you know what, when I look at the slide I showed, uh, like an iceberg, and stuff.

Or that they're having to deal with like sleep problems, etc. That actually overtakes the pain and that becomes more, you know, pain isn't the main problem. All this other stuff kicks in like, you know, and that's why you guys are struggling like, you know, because of, um, it's like you're letting, uh, So like, right, uh, like, you know, driving a car, but you're letting it get away from you sort of thing.

Like, you know, you're, you're stuck your foot in the gas pedal and you are off, you go, like, and you, you just, you become out of control. So, et cetera, like, you know, so it's so important from the get go is that you get 'em kick, get 'em put back in a [00:28:34] driving seat, but work out a battle plan between the two of you.

So have a look at these here. Fred or Rosie and see what what's which one of these uh, which the tools that you feel you need some help with well Well, perhaps I'm struggling. I know I know movement is really good, you know I can't can help me but I'm not sure what to do, you know So that's where you guys kicking like, you know The thing is once once you've had once once I've had pain for three months or more I'm not sure a lot of health care professionals have got the skills and tools to deal with that stuff like, you know And that's where these other guys are kicking in now You've got it over there, you know, they've started off here in the UK.

They're called social prescribers like, you know, and they all know what's going locally where they could be signposted to for other things, etc, like, you know.

Mark Kargela: Yeah, it's, it's one of those things, like you said, uh, healthcare tends to see. That tip of the iceberg that first three months where things might be a little bit more [00:29:34] relevant with like imaging and things where maybe a little bit more of that tissue base, but even then, in the acute stages, you're always going to have thoughts and beliefs and understandings of what's going on and thoughts about what your future may hold with whatever condition you're carrying.

So it's tough, but I think medicine just gets stuck because we're not prepared. Well, To understand what lies beneath that surface of that water underneath that iceberg that you spoke of with the psychosocial issue, money worries, loneliness, depression, um, all the things that, that unfortunately accompany a tough journey when, when, you know, pain starting to really take away some of the things, the people's identities, the things that they take.

You know, saw themselves as being as a, you know, worker or somebody who's doing, you know, we could go into a myriad of, of examples of that stuff, but it's great that, you know, we've seen in healthcare, especially in your experience that we have healthcare practitioners who are at least receptive. And usually based on the fact that they're [00:30:34] burning out, they're frustrated because they're not able, and I know this was for me, especially, I didn't have any skills to help someone like yourself, if I couldn't explain it through your tissues, I didn't really have much to offer, and when people came in angry, frustrated, sad, crying, screaming, all the things in between that, uh, So when you actually give people the chance to, to talk about their story and what they've had to endure alongside, you know, these pain situations, um, it would, it, it makes a lot of sense why people go through a lot of that stuff.

Um, you've, you've spoke to, you know, a bit of some of the things you're up to with. You know, pain toolkit and, and different things, but we spoke before we got on, on the interview and I think it's kind of fascinating, um, you know, where you've come from in, in 93 to gosh, now you're, there's an AI version of Pete and he's on a, and also has got a virtual reality platform.

I'd love if you could share a little bit of that with the audience, because I think it's one, it's an awesome example of, you know, current. [00:31:34] Technology, you know, hopefully moving in a direction that can help some people, but um, also just the, the whole virtual technology AI thing, I think is just fascinating.

Can you share that with folks?

Pete Moore: Yeah, sure, uh, I mean, the AI, uh, artificial intelligence AI, I mean, it's, I don't know about you, there's a massive conference here in London. Um, last week, this week just gone actually with, uh, your, your, uh, Elon was there AI, et cetera, like, and, um, I've been in the last few years, I've been more than a few years, five or six years now, I've been working alongside, um, Dennis Martin, Professor Dennis Martin up in Seaside University up in the Northeast.

And, um, we've done some little projects around, uh, virtual reality, et cetera, and, uh, Doozo in, in, in the, uh, European Union, et cetera. Anyway, what, um, how the AI come around was, uh, We were lucky that [00:32:34] we, uh, we got some money from, uh, from the European Union before, you know, all the, before we left the, left the European Union, but, and, uh, and Dennis showed me about this, this thing called, uh, an organization in Los Angeles called Storyfile, how they'd, uh, captured people's experiences because they realized that, uh, people with, um, Uh, older people, you know, that experience about life and stuff like that, or what they've gone through and, um, they recognize that they, uh, you know, they may not be here one day, where's, how are the people going to learn about, learn information or their experiences?

So they, this guy, I think he's a Brit actually, um, I can't think of his name off the top of my head, but anyway, what they do is they record your... We called, um, what they might, what they did for me, let's talk about how they did it for me. So over two days I went to the university up in Middlesbrough and, uh, we, [00:33:34] uh, they asked me about, I think it's about 440 questions they said.

Um, I was sitting in a chair, I was sitting in a chair for two days in the same position. I did, I mean, I'd take round me feet, so when I'd come back the next day, I'd sit there and I couldn't, couldn't talk to it, et cetera, but they were filming me, asking me questions, um, about, uh, myself, uh, personal stuff, and also, um, what, about self management.

Pain self management and the toolkit, the pain toolkit. And what they did is they, they had all the software in LA and they did all that. So what it, what it is now, people can go into that, that ai, uh, platform and, uh, AIP and, uh, you can, uh, ask, you can either type in a question and I'll answer you like I'm talking to you now.

Or they can, you can ask verbally, you can ask, ask me a question. There's some things that, you know, the people, I know I've asked me [00:34:34] some dark questions, and I know I have to say, I'm sorry, I don't know, I don't know the answer to that, you know, but as long as it's about myself, pain management or self management.

And, uh, and it's all good. I can answer and apparently the feedback so far has been brilliant, you know, because it's, uh, because it's interactive sort of thing like, you know, so that's quite cool. And the virtual reality that came around, uh, a chance, but, uh, in, uh, in, uh, in the Netherlands each year, they. I hold a, um, uh, a conference about VR and virtual reality because in Europe VR is quite big, like, you know, and at the conference they show you how they're using VR and other technology to, uh, for healthcare sort of thing, uh, reasons.

Anyway, so I got into that, but as you know, with VR and anything like the technology, monster money. But, [00:35:34] um, someone told me, uh, this is, this is the, this is the fantastic thing about technology is that, uh, a friend of mine over in Australia, she told me about a Japanese doctor who's, um, got a pain, uh,

He's got this VR platform and, um, and he can, and all these patients go and he's got 500 patients. So what he did is set up this, uh, this, uh, these, they're called hangouts. So it's like an American, uh, American platform, but it's like they're already made some, there are some already made hangouts that you can use and you populate yourself.

So, um, anyway, what I like about this platform, uh, this from this, the Japanese doctor told me about it and I went on registered and I sort of messed around with it, is that you don't, you, you can, you know, obviously get a bit of experience if you use the um, VR headset. [00:36:34] But if you don't want to go to that expense, then you can actually, um, access it via the computer, um, your phone, uh, your tablet, uh, laptop, etc.

And, uh, and the, uh, people go, they just visit. So they've got, so I've made a hangout for, um, the pain toolkit, the self management toolkit. There's another hangout there where I run workshops, all in virtual reality. And, you know, the funny thing, uh, the funny thing about why people like this and it come about by another version, uh, I did with Dennis, uh, another, uh, the PaintSortKit Cafe in another format of VR, which is, well, compared to what I'm using, it's pretty, pretty, uh, Low tech sort of stuff, but people have come on to do the workshops with me, they, I was quite taken aback, I said, what do you like about all this, you know, and then several people said to me, they like being an [00:37:34] avatar because it's, it's not so, it's non judgmental, right, so people ain't saying to them, oh, You know, why are you laying in a bed doing this or why are you, why do you keep getting up and moving around?

Why do you have to keep saying, you know, so, but in the VR lens, so it's like, uh, yeah, everybody goes into neutral. So, I mean, I've got a VR meeting, you know, VR. I like him cause he's thinner. So, um, but yeah, people, people like it. So the, uh, in hangouts, like walking around and like a gallery, a great locker.

Perhaps an art gallery. So what I've done, I've populated it with all, uh, like the screenshots that I use and pain cell management messages, etc. Like, you know, but when I go in there, I see them there hanging around with each other and Like, you know, they're walking around, you can hear them saying, yeah, that, that pacing, yeah, I saw that proper pacing.

What does Pete say [00:38:34] about that? And, uh, but you can, So I've done screenshots, but you can also upload videos. So, um, uh, there's, you know, you can watch short videos and stuff like that. So to me, um, I, I'm always keen to, I think what, what we, uh, in, in, uh, in healthcare game, it's like a, it's very monochrome.

It's, um, it's either someone's going to get a leaflet, perhaps a booklet or something. And really, I'm always looking to the future because the youngsters today, I'm going to, you know, the kids, you know, the kids aren't going to pick that one of them up. But what it will do, they'll, they'll, they'll dig the, uh, the, the, uh, virtual reality or the AI sort of stuff like, because that's what they're doing now.

So I think what we've got to go, we have to wise up a little bit in the healthcare game. And then we need to think about, well, how, how do people like their their information and [00:39:34] uh, you know, you go like it visually says the other, this is the other question, uh, doesn't get asked to, uh, to patients when, when healthcare professionals see them, they never say to the patient, how, uh, how do you want your information?

It's usually, they always walk out of there with a leaflet or something, but this is what I learned when I did, uh, some training, uh, adult education. It's a, but you need to have, uh, like a, uh, and again, another toolkit. But in the toolkit is the various ways on how people learn. So are people visual learners or do they learn from listening, listening or, uh, say watching?

through practice, um, etc. So, you know, that's the thing. I also have patients where I say, how do you like your information? Do you like visual? Now, I'll give you a tip off now, or how do you tip? People we're paying, we're visual, most of us are visual learners, but Uh, because I think what it is, [00:40:34] the reason why we're visual artists is because pain is always grabbing our attention all the time.

It's like someone tapping you on the shoulder. You know, our attention span is pretty, pretty, pretty low. But we like, you know, not, uh, not feature films and stuff like that. Very like, you know, three or four or five minute videos max. Um, but also with audio. So that's what I try to do on the website really so people can learn.

Uh, so there's audio versions of stuff, uh, uh, what, uh, the videos I put, I stick on there, text and whatnot, like, you know, quizzes. Oh, there's the other thing as well. Make, make it fun. Um, I've, uh, been commissioned a couple of years ago to, uh, We've got like a pacing game that you can play and also like the pain socket game.

In a way it's testing your knowledge of, uh, about pacing and stuff like that. But you're having fun at the same time because you can play with different, uh, members of your family or, or a colleague, et cetera, et [00:41:34] cetera, like, you know.

Mark Kargela: Yeah. And again, it just to fascinates me your journey from, you know, initial, maybe I can get 5, 000 of these and then now look at to where this has grown to. And thank God, I mean, we have this information pushing out there to. To help and touch a lot more people in different mediums, like you said, that better serves the unique person that hopefully is trying to make a journey, um, in a different direction.

Uh, I want to respect your time, uh, today people will close with one more question and maybe something like if, if somebody is watching this or you're coming across somebody who's in that passenger seat, um, in the fog, not knowing kind of which way to go or where to turn. What would be like your, your, your pitch to them to kind of maybe make a change in how they're kind of going about their journey with pain?

Pete Moore: Well, a simple one really. I always find, uh, someone like yourself, um, a healthcare professional, could [00:42:34] be a friend, et cetera, but normally a healthcare professional who's, uh, Uh, has, has experience in teaching self management. Um, I'm not sure, I'm not sure a GP has time to do that, but it may be a nurse at the surgery or something like that.

But now there's lots of, uh, pain, pain coaches. There's other, there's like me, I'm, I'm a pain coach. You know, uh, I'm teaching healthcare professionals and patients, but there are others coming online now. Uh, and not just here in the UK, but also around the world. But I think I always say to people, really, if I can do it, you can do it.

It's as simple as that, because the self management, it's not rocket science. Full stop. It just, when you look at self management, just practical information. And that's how, you know, when I'm sitting there, you know, back in 96, on the pain management program, and then talking about pacing, about taking a break before you think you need to, and I'm thinking, you know, seeing the thinking, holy crap.

That's just common [00:43:34] sense, but you know, when, when you're, you know, when you've got pain or a long term condition, that common sense seems to take it a back seat, you know, but if I could do it, so look, look, I haven't got one academic bone in my body. Okay. I'm sure I've done a few courses and stuff like that.

I'm always like a keen to learn. The other week I did a course on supporting people with hearing problems and visual problems like impairments and stuff like that. I'm always keen because How can I improve to get the message out there? Like, you know, because you know, people with vision problems, but here in the impairments and stuff like that, you know, don't get pain as well while we're leaving him on the side, we've how I say it's about engaging the community, but the main thing about the self management, I have fun and I learned that working with the Germans.

Mark Kargela: Yeah. Yeah. No good words and really appreciate your time today. And again, can't [00:44:34] can't speak highly enough about what you're doing. And again, the journey you've you've had to where you're really making an impact on a lot of people's lives and then hope to see it continue long into the future. And we'll have definitely have to have you back on as you're Have more and more projects.

I am always amazed talking to you about some of the things you're up to and you know, always kind of pushing the envelope to help more people. So thank you again for your time today, Pete, and really wish you the best of luck in your, all your future endeavors.

Pete Moore: Yeah. Thanks, Malcolm. Thanks very much for inviting me. I really appreciate it. Have a groovy day, dude.

Mark Kargela: We'll do it. For those of you listening, I would love to have you subscribe on your podcast, wherever you're listening to your podcast. And if you're watching on YouTube, we'd love to have you subscribe there. That way we can get more messages. Maybe somebody else's in the passenger seat. And they will need to hear somebody like Pete talking to see if they can make a change in their journey.

So we'd love to have you subscribe, share among your social media, friends and family to see if we can help some more people, but we're gonna leave it at that this week. Really enjoyed the episode this week with you, Pete, you all have a good rest of your day. We'll talk [00:45:34] to you all next week.