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Transcript — Airing Pain 98: IASP Global Year of Excellence in Pain Education and Bristol Pain Management Programme

What is the IASP Glob­al Year of Excel­lence in Pain Edu­ca­tion, and how does pain man­age­ment research ben­e­fit the patient?

To lis­ten to this pro­gramme, please click here.

This edi­tion is fund­ed by Pain Concern’s donors and friends, assist­ed by an edu­ca­tion­al grant from Grünenthal.

The Inter­na­tion­al Asso­ci­a­tion for the Study of Pain (IASP), formed in 1973, is the lead­ing forum of sci­en­tists, clin­i­cians, health­care providers and pol­i­cy mak­ers sup­port­ing and pro­mot­ing the study of pain and using that knowl­edge to improve pain relief worldwide.

Each year IASP focus­es on a dif­fer­ent aspect of pain that has glob­al rel­e­vance. In 2017, IASP focused on pain after surgery, and joint pain was the focus of 2016. In this pro­gramme, Paul Evans speaks to Dr Paul Wilkin­son, task force lead for the 2018 Glob­al Year for Excel­lence in Pain Education.

IASP hopes to advance the under­stand­ing of pain in the areas of gov­ern­ment, pro­fes­sion­al and research edu­ca­tion and ulti­mate­ly cre­ate strat­e­gy to com­mu­ni­cate the gaps in pain edu­ca­tion globally.

Paul also speaks to clin­i­cal psy­chol­o­gist Dr Nicholas Ambler, patient train­er Lisa Par­ry and assis­tant psy­chol­o­gist Saree­ta Vyas at the Bris­tol Pain Man­age­ment Pro­gramme to find out if there is a cor­re­la­tion between invest­ment in pain man­age­ment research and devel­op­ment and patient benefit.

Issues cov­ered in this pro­gramme include: Avail­abil­i­ty of pain ser­vices, CBT: cog­ni­tive behav­iour­al ther­a­py, chron­ic pri­ma­ry pain, edu­cat­ing health­care pro­fes­sion­als, fund­ing of pain ser­vices, GP, insom­nia, pol­i­cy, online resources, sleep com­pres­sion and volunteering.

Paul Evans: This is Air­ing Pain, a pro­gramme brought to you by Pain Con­cern, the UK char­i­ty pro­vid­ing infor­ma­tion and sup­port for those of us liv­ing with pain and for health care pro­fes­sion­als. I’m Paul Evans, and this edi­tion is fund­ed by Pain Concern’s donors and friends, assist­ed with an edu­ca­tion­al grant from Grünenthal.

Dr Paul Wilkin­son: If all health care pro­fes­sion­als in the field of pain did one hour of edu­ca­tion for one day in just one year, in terms of the num­ber of peo­ple that would be reached, it would make a very sig­nif­i­cant difference.

Evans: The Inter­na­tion­al Asso­ci­a­tion for the Study of Pain, or IASP as it’s known, brings togeth­er sci­en­tists, clin­i­cians, health-care providers, and pol­i­cy­mak­ers to stim­u­late and sup­port the study of pain and trans­late that knowl­edge into improved pain relief world­wide. They have nom­i­nat­ed 2018 as the Glob­al Year of Excel­lence in Pain Education.

Dr Paul Wilkin­son, who is Direc­tor of the Pain Man­age­ment Ser­vice in New­cas­tle in the UK, is lead for the inter­na­tion­al task force for the project.

Wilkin­son: The Glob­al Year for Excel­lence in Pain Edu­ca­tion is divid­ed into four main areas:

  • Patient edu­ca­tion
  • Pro­fes­sion­al education
  • Pub­lic and gov­ern­ment education
  • Pain edu­ca­tion research

The cor­ner­stone of the Glob­al Year for Excel­lence in Pain Edu­ca­tion will be a web-based resource which will have edu­ca­tion­al resources for pro­fes­sion­als, for patients, for pub­lic and gov­ern­ment and to facil­i­tate edu­ca­tion research. But resources are not much good on a web­site; we have to lift them off the web­site and there will be strate­gies to try to com­mu­ni­cate the needs, the gap in pain edu­ca­tion through the world.

One key exam­ple would be that there is an absence of min­i­mal essen­tial train­ing for health­care pro­fes­sion­als in pain man­age­ment in hos­pi­tals and health­care institutions.

There was an impor­tant pub­li­ca­tion in Cana­da and [it] was being repli­cat­ed in oth­er coun­tries that showed that the edu­ca­tion­al pro­vi­sion to health­care pro­fes­sion­als was less than [to] vets. Obvi­ous­ly, the infer­ence there was that maybe ani­mals were get­ting the bet­ter deal than humans. So that was a strong state­ment for what need­ed to be done in in pain education.

Evans:  So how will the Glob­al Year address that?

Wilkin­son: It’s got a mul­ti-prong spe­cial­ty cov­er­ing the dif­fer­ent areas of education.

With patient edu­ca­tion, we are pro­vid­ing a series of resources that will improve patient edu­ca­tion, using the most up-to-date research.

For pro­fes­sion­als, there is a launch of a num­ber of cur­ric­u­la and resources to try and help pro­fes­sion­al devel­op­ment. In addi­tion, we want min­i­mum essen­tial train­ing for all health care professionals.

Relat­ed to pub­lic and gov­ern­ment edu­ca­tion, we want to car­ry the mes­sages to gov­ern­ment and make pub­lic aware of the prob­lems that the patients suf­fer with and the lack of resources through the world.

Final­ly, as well as try­ing to bridge the gap between what we now know and what we do, we would actu­al­ly like to know more, so pain edu­ca­tion research is an impor­tant part of the Glob­al Year.

Evans:  Now you’re based in the UK, you work in New­cas­tle with the NHS.  Is there some­thing you can learn from oth­er coun­tries, shar­ing of infor­ma­tion, if you like, and oth­er coun­tries can learn from you?

Wilkin­son: Absolute­ly. The dis­sem­i­na­tion of dif­fer­ent expe­ri­ences is an impor­tant part of the Glob­al Year for Excel­lence in Pain Edu­ca­tion. The Inter­na­tion­al Asso­ci­a­tion for the Study of Pain val­ues this in part of its work. There are pos­i­tive expe­ri­ences of treat­ing dif­fer­ent con­di­tions in dif­fer­ent parts of the world. It’s real­ly impor­tant that new devel­op­ments are shared across coun­tries and between countries.

Evans:  When we speak again in a year’s time, what do you hope will have happened?

Wilkin­son: I hope that every per­son with pain in the world would know the kind of resources that are avail­able to help them. We want gov­ern­ments through the world to rec­og­nize pain as a dis­ease and to pro­vide the resource to ensure the well-being of their population.

Evans:  You brought up an inter­est­ing point of gov­ern­ments recog­nis­ing pain. Well, is chron­ic pain a con­di­tion, or was it just a result of some oth­er condition?

Wilkin­son: Well, there are two types of pain, broad­ly speak­ing, acute pain and chron­ic pain. These may not be the best terms, but that’s what we use med­ical­ly. Acute pain is pain that fol­lows injury. It’s close­ly relat­ed to injury, it’s pro­por­tion­ate to lev­el of injury — as the injury heals, the pain resolves.

What I think peo­ple don’t know, is that where pain per­sists, yes it may be due to a prob­lem, it may be due to a rheuma­to­log­i­cal con­di­tion (rheuma­toid arthri­tis) that’s not resolved, but most com­mon­ly, it occurs in its own right. It’s a dis­ease in its own right, there are changes that occur in pain parts of the ner­vous sys­tem, which mean that when injuries heal, instead of the pain going as injury gets bet­ter, the pain unfor­tu­nate­ly stays.

Some­times we rec­og­nize these injuries because we know the acci­dent occurred. But some­times these injuries are small, they occur through our life­time and lead to per­sis­tent back pain or per­sis­tent neck pain, tak­ing away the life that we’d had previously.

In fact, one of the start­ing points of the Glob­al Year is to try to improve our under­stand­ing of pain bet­ter through patient sto­ries. So the Glob­al Year of Excel­lence in Pain Edu­ca­tion is start­ing with patients, putting patients in the middle.

Evans:  That edu­ca­tion side from the patien­t’s point of view, explain­ing what pain is and what’s avail­able there, that’s some­thing that I hope we in Pain Con­cern can con­tribute to this Glob­al Year of Excel­lence in Pain Education.

Wilkin­son: Absolute­ly. And I hope that this will con­tribute sig­nif­i­cant­ly to edu­ca­tion in pro­mot­ing the Glob­al Year.

Evans: That’s Dr Paul Wilkin­son, lead of the Inter­na­tion­al Asso­ci­a­tion for the Study of Pain’s task force of their Glob­al Year of Excel­lence in Pain Edu­ca­tion. You can keep up to date with all that’s hap­pen­ing through­out the year at IASP’s web­site which is https://www.iasp-pain.org

And don’t for­get that Pain Con­cern con­tributes sub­stan­tial­ly to patient and health­care edu­ca­tion through its infor­ma­tion leaflets, helpline, mag­a­zine, cam­paigns and of course these Air­ing Pain pod­casts.  This is 98 by the way – that’s near­ly fifty hours of infor­ma­tion about liv­ing with and man­ag­ing chron­ic pain, from lead­ing author­i­ties in their field – be they health­care pro­fes­sion­als and researchers or expert patients. You can down­load all edi­tions from Pain Concern’s web­site which is www.painconcern.org.uk

It’s prob­a­bly best not to lis­ten to all 50 hours’ worth in one go, which brings me to the small print that, whilst we in Pain Con­cern believe the infor­ma­tion and opin­ions on Air­ing Pain are accu­rate and sound based on the best judge­ments avail­able, you should always con­sult your health 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.

Now, advances in pain med­i­cine and pain man­age­ment can cost an awful lot of mon­ey in terms of research and devel­op­ment and they can take years to roll out. But is there a cor­re­la­tion between invest­ment and patient ben­e­fit? Pounds per points on the pain score if you like?

Dr.Nick Ambler: There’s a gold­mine here. It real­ly is some­thing that could make a mas­sive dif­fer­ence to the way in which peo­ple sus­tain the gains, sus­tain the momen­tum of a pain man­age­ment pro­gramme. That’s our feel­ing, there real­ly is some­thing to mine into here.

Evans: That’s Dr Nick Ambler. He’s a Clin­i­cal Psy­chol­o­gist and a lead of the North Bris­tol Pain Man­age­ment and Self-Man­age­ment Pro­grammes at South­mead Hos­pi­tal in Bris­tol in the UK. And this is Lisa Parry.

Lisa Par­ry: I’m a patient that’s been through a self-man­age­ment pro­gramme with­in the hos­pi­tal here and at the end of that, we were asked if any of us were inter­est­ed in vol­un­teer­ing to help present the pro­gramme.  I had found it so ben­e­fi­cial for myself, that I thought it would be maybe a good thing for me to do.

Evans: Nick, you’re one of the leads on the pain man­age­ment pro­gramme, I’m not sure I’ve come across patients being active­ly involved as teachers.

Ambler: It’s some­thing we start­ed around 2008/2009, as part of a mul­ti-cen­tre project across the coun­try regard­ing long term con­di­tions. [The project] involved not just involve­ment of a patient tutor in pro­vid­ing infor­ma­tion and per­son­al expe­ri­ence, but the shar­ing of the deliv­ery of the whole course, which was a big leap for us then. Quite a few of us were con­cerned about how well that would work out, but we quick­ly found that it works spec­tac­u­lar­ly well with­in the con­text of reor­ga­niz­ing our ser­vice to have a mid­dle tier.

I think most peo­ple have a grasp of what a pain man­age­ment pro­gramme is nowa­days, which from our point of view is quite an inten­sive form of sup­port for peo­ple to learn self-man­age­ment strate­gies with chron­ic pain. We cre­at­ed a mid­dle tier for peo­ple that are real­ly just ready to have a go at it. They already under­stand the basics of it, they’re not ambiva­lent about want­i­ng to try that stuff out. We designed a short­er course, where you basi­cal­ly hit the ground run­ning with that.

Evans: Now, I guess that it’s not unusu­al to have a so called “Expert Patient” in just to talk to peo­ple, but actu­al­ly to teach them… what are the issues there?

Ambler:  I think the con­cerns every­body had real­ly from peo­ple vol­un­teer­ing to come for­ward were “What do you want me to do, is it right that I should be doing this? I need to know what’s going to hap­pen, I need to know pre­cise­ly what I need to say”.

From the health pro­fes­sion­als’ per­spec­tive, con­cern at hav­ing gath­ered a hell of a lot of expe­ri­ence before, you’re in a posi­tion where you can deliv­er pain man­age­ment pro­gram, [but] it kind of felt as if that expe­ri­ence was being not being acknowl­edged. You do need that as a health pro­fes­sion­al, but what they lack is a day-to-day under­stand­ing of what it’s like liv­ing with pain, they don’t have per­son­al ref­er­ence points.

With every ele­ment of course deliv­ery, there’s the stuff that will res­onate for Lisa because she’s had to face those chal­lenges in ways that I haven’t, so I can’t con­stant­ly refer back to that. They’re not a mod­el of how well some­body can adapt them­selves despite hav­ing pain every day. Lisa brings all of that stuff into a course in a way that I can’t.

So the thing that we need­ed to tack­le fair­ly ear­ly on, was set­ting up a train­ing course which pro­vid­ed the basic rudi­ments and also to define the role, because there are clear dis­tinc­tions in the way in which the patient tutors oper­ate with­in their share of the course and the way in which the health pro­fes­sion­als operate.

Basics that we all observe though, is when you’re doing one of these cours­es, we have an under­stand­ing which is our own, that we try not to dic­tate. So we’ve had this mantra of “Ask Don’t Tell” which is basi­cal­ly — explore issues with peo­ple, but don’t try and tell them how to live their lives. The learn­ing expe­ri­ence of tak­ing part in one of these cours­es means rub­bing shoul­ders with oth­ers in the same sit­u­a­tion, learn­ing as much off them and learn­ing by tri­al and error, pri­or­i­tiz­ing what you want to change.  All those things are going to be a unique thing for each indi­vid­ual tak­ing part.

Evans: Lisa, tell me about your pain journey.

Par­ry: Basi­cal­ly, I was fit and active, work­ing for Bris­tol Uni­ver­si­ty at their Vet­eri­nary School, a very phys­i­cal­ly demand­ing job and one day I bent over at work and I then could­n’t walk. At the time I was just bent over in pain, I’d had what I think they used to call a slipped disc, a bulging disc and was expect­ing a fair­ly quick recov­ery from that which did­n’t actu­al­ly hap­pen and I just could not do the job I was employed to do basi­cal­ly. I had to give up work­ing then and it’s been kind of find­ing my way back from a bit of a dark place, from that point onwards, liv­ing with pain. It’s pret­ty con­stant, but now hav­ing done the self-man­age­ment pro­gram, I’m able to man­age that to a lev­el where I can con­tin­ue to do the things that I want to do now.

Ambler: I think any­body liv­ing with the sit­u­a­tion that Lisa’s just described, faces lots of choic­es. They may not rec­og­nize those choic­es straight away.

For exam­ple, what do you pri­or­i­tize if you only have so much ener­gy and focus left to you in a day because you’ve had a ter­ri­ble night’s sleep and you can’t move around very well. You could be think­ing about man­ag­ing a bit of the house­work per­haps, or go to see some­one or read­ing or some­thing like that. What are you going to do? And what are you doing, for exam­ple, to main­tain your fit­ness, against the fact that the pain that’s going on is prob­a­bly com­pli­cat­ing things with mus­cle ten­sion, so if you’re inac­tive, it’s hard­er to get to sleep.  So, when you make that choice, it will have consequences.

If you do some more house­work, it’s going to have a ben­e­fi­cial effect in one area, but not in anoth­er. If you decide to, say, call a friend or go see some­one, likewise.

Evans: In some ways, it is a lit­tle bit of self-con­trol as well, because if I’m feel­ing well today, or if Lisa’s feel­ing well today, she could go out and run a marathon. It might not be the cor­rect thing to do, so you have to con­trol your thoughts and actions.

Ambler: Yes, the top­ic of pac­ing is one of the things that peo­ple reflect back on at the end of course say­ing “I real­ly need­ed to do some­thing about that…” which is odd, because at the begin­ning of the course we gen­er­al­ly ask peo­ple “who under­stands the impor­tance of pac­ing?” and every­body says they do.

They all say “Yes, it’s real­ly impor­tant” and so the next ques­tion that fol­lows from that is “who is pret­ty good about apply­ing it?

Evans: Lisa, how easy is pacing?

Par­ry: Real­ly, real­ly dif­fi­cult [laughs]. Not for me now, now I’ve kind of got the hang of it. But at the begin­ning, real­ly dif­fi­cult to think “I’m going to do a min­i­mum amount of some­thing” to enable me to then get through the rest of the day. So I’ll do a min­i­mum amount and then I’ll put a rest break in, or I’ll take a short walk, or I’ll do some­thing else and I’ll go back and do anoth­er small por­tion a bit lat­er on.

You’re fight­ing that instinct to get the job done, which is how I was brought up — if you start a job you should fin­ish it.  I think that’s per­haps how a lot of peo­ple are, you want to get things done. To break that cycle is real­ly quite dif­fi­cult at the begin­ning, but once you do, it’s fan­tas­tic and it has actu­al­ly enabled me to do far more, long-term than if I had tried to keep going on this cycle of “do it all” and then be off my feet for four days.

Evans: Nick, I sup­pose you have to keep (for want of a bet­ter term) patient train­ers on mes­sage, it has to be with­in your curriculum?

Ambler: Yes, and there is always a sense with these cours­es that we don’t have enough time to get through all that we want to get through. There’s a degree to which one adapts each course, accord­ing to what crops up for that group of peo­ple. Some have big­ger pri­or­i­ties, for exam­ple, around the way in which frus­tra­tion and anger can come out in every­day life in rela­tion­ships. That wouldn’t nor­mal­ly be part of our cur­ricu­lum for the course, but some­times we bring stuff in about that and run a ses­sion on that.

Lots of groups have real issues with sleep, it’s some­thing my col­league, Saree­ta, knows a lot about. There’s oth­er groups [where] that’s less the case and so we might mag­ni­fy or play that down. But we do have core set of things that we need to get through.

I think as well, one of the dis­ci­plines for health pro­fes­sion­als that we have to do, is for us not to be telling long, elab­o­rate, metaphor­i­cal sto­ries about why a point is impor­tant, when you have some­body sit­ting next to you who can talk from the heart about what they did in a much more suc­cinct way. So, to an extent, the health pro­fes­sion­als need to rein it in, not just the patient tutors!

Evans: Saree­ta, Nick has just dropped you in it by talk­ing about the sleep course.  The Sleep Man­age­ment Pro­gramme, that’s not the same as the Pain Man­age­ment Programme?

Saree­ta Vyas: No, it’s a sep­a­rate course that we run so peo­ple could come along to improve their sleep either before they attend a pain man­age­ment pro­gramme or a self-man­age­ment pro­gramme or after. It’s real­ly a time just to focus pure­ly on improv­ing someone’s sleep. We’ve adapt­ed the cog­ni­tive behav­iour­al ther­a­py approach for insom­nia to cater for peo­ple in chron­ic pain.

So mak­ing their area for sleep as com­fort­able as pos­si­ble, maybe putting in some rou­tines of wind­ing down before they go to sleep, putting in some con­sis­tent bed­times and wake up times. We also look at thoughts that might be hap­pen­ing at night, because we know that a lot of peo­ple do their think­ing at night and that can be quite dis­tress­ing if their thoughts go to things that keep them awake.

But the most pow­er­ful part of the course is what we call sleep com­pres­sion or sleep restric­tion. The idea of sleep com­pres­sion or sleep restric­tion is actu­al­ly reduc­ing the amount of time that you are in bed so that the sleep pres­sure builds up through­out the day, so that once you do get into bed, you get off quick­er. You may still wake up through­out the night, but the times that you are awake for are reduced and peo­ple report feel­ing their qual­i­ty of sleep has improved as well.

It all sounds quite dif­fi­cult because a lot of peo­ple real­ly strug­gle with that.  Ini­tial­ly you’re actu­al­ly reduc­ing the time that you’re spend­ing in bed by a quite sig­nif­i­cant amount, so that can be real­ly, real­ly chal­leng­ing to stay awake longer in the evenings and when every part of you wants to get into bed.

It’s a real­ly dif­fi­cult kind of inter­ven­tion to go through and that’s where the group comes togeth­er real­ly well.  There might be sev­er­al peo­ple in the group that are doing that togeth­er and so when they come back to report on how the week’s been, it’s some­thing that can they can think about togeth­er and think of ways of how they can keep going with it.

Evans: At what stage do peo­ple come on the pain man­age­ment course Nick?

Ambler: I would like to think peo­ple come when they feel that this is the right thing for them. So you meet peo­ple fair­ly ear­ly on after an injury, sim­i­lar to the way that Lisa described. They could be expect­ing, rea­son­ably, that they might recov­er [e.g.] I don’t need to be doing some­thing like this, because I’m going to be bet­ter by this time next year.

Par­ry: My atti­tude going into doing my course was, even if I just learned one new thing that will help me to make an improve­ment; that would be enough. Obvi­ous­ly, I picked up lots more than that.

Evans: So you went from patient to patient tutor…how did that hap­pen? How did you make that transition?

Par­ry: At the end of the course, we were asked as a group, if any­one would be inter­est­ed in doing it. I actu­al­ly had a Patient Tutor on my course, who I felt just made every­thing valid. It was real, it she’d had per­son­al expe­ri­ence; she under­stood what we were say­ing. That was real­ly impor­tant to me to have her, there so I just felt “Oh I’ll give it a go. I might not be able to do it, I may not even get as far as the meet­ing about it”.  But I did and I did the train­ing course, I then actu­al­ly went and sat in on a course. I did­n’t actu­al­ly present or give any sort of teach­ing as such, but I was observ­ing and watch­ing what they were doing and then after that I did my first course.

Evans: What was that like?

Par­ry:  Scary as can be [laughs]. Real­ly scared, quite ner­vous, just with a group of peo­ple com­ing in that obvi­ous­ly you’ve nev­er met before. Explain­ing to them that it was my first time and be nice to me, basi­cal­ly! But yeah, it was absolute­ly fine.

Evans: So did you feel the love, the empa­thy com­ing back at you?

Par­ry: Yeah, oh absolute­ly, they were real­ly fan­tas­tic. Because I’d said “This is the first time I’ve done this”.  They were just like “It’s real­ly good, you’re doing fine” and that gave me a mas­sive amount of con­fi­dence to keep going and to enjoy what I was doing.

Evans: So we’ve heard all about this empa­thy, this love — it’s a two-way thing for the patient tutor and the patient. What hap­pens when they part com­pa­ny and the pain man­age­ment pro­gramme is over?

Ambler: I think usu­al­ly there’s a hope on the part of the health pro­fes­sion­als, that this is the begin­ning, the plat­form after which peo­ple will pow­er on. They have a grasp of what’s involved, but they haven’t resolved every­thing, they haven’t got to the per­fect place for cop­ing yet and that they will use what they’ve learned off each oth­er in this part of the pro­gramme to take things forward.

But sad­ly, when you meet peo­ple lat­er on, that often turns out not to be the case and one of the things that we’ve been try­ing to do dif­fer­ent­ly in the last five years has been to change the way cours­es end. This all came from an inci­dent that hap­pened in that first group that Lisa was describ­ing and it was when we met for a fol­low-up meet­ing three months after that course had fin­ished. Do you remem­ber what hap­pened Lisa?

Par­ry:  Yeah, one of the girls in the in the group basi­cal­ly took Nick to one side and said “Oh what do we do now, you can’t just leave us, we’re feel­ing like you’ve aban­doned us” kind of that sce­nario and was sort of demand­ing “What do we do, what are we going to do?”.

Ambler:  At this point, it’s not just me, health pro­fes­sion­als who run cours­es tend to squirm. They have, in a sense, got to close this off now. That’s part of our process, because we need to be mov­ing on, we’ve already pre­pared the next course and we can’t be doing with bids for keep­ing the whole thing going.

But in that sit­u­a­tion, my squirm­ing and wrig­gling led to me push­ing it back to that group of peo­ple to fig­ure out what they were going to do to keep it going. But the thing that was dif­fer­ent, was the ques­tion was about them col­lec­tive­ly rather than indi­vid­u­al­ly and that group of peo­ple decid­ed they will car­ry on meet­ing with­out me, but they invit­ed Lisa to car­ry on with them, as some­one who knew and that’s pret­ty much what hap­pened isn’t it?

Par­ry: Yeah and we still meet now. That was about six years ago from that first course. They decid­ed they were going to get togeth­er every two weeks to meet up for a cou­ple of hours, just to see how every­one was doing, to make sure peo­ple were still man­ag­ing and they weren’t strug­gling with any­thing, they asked me to go along.

We had our Christ­mas par­ty last Fri­day for a cou­ple of hours and yes, we’ve con­tin­ued to meet.

Ambler:  [It’s] more than just the social con­tact though, they kept going with the busi­ness side…

Par­ry: Oh yeah, we still goal set. We took goal set­ting as our main focus because we’re con­stant­ly try­ing to move for­wards. There are things we need to do and there are things we want to do.  I think we all felt, through that first course, that that was a real­ly ben­e­fi­cial thing for us so we car­ried on doing it.

Ambler:  This became some­thing that we learned from, because we fig­ured out that this group of peo­ple were doing some­thing that seemed clear­ly to be of great val­ue to them. When I had rea­son to meet with them some­time after this, they’d resolved a whole load of prob­lems which I would have expect­ed to come back either into a Gen­er­al Practitioner’s clin­ic or into the pain clinic.

But they’d sort­ed that those prob­lems out amongst them­selves, crises real­ly. So what we learned was to try and change the way we end­ed cours­es.  Rather than think of the whole process as pack­ing up the tents, the cir­cus is leav­ing town, which is real­ly what’s going on in the health professional’s head, to see it instead as the health pro­fes­sion­als leav­ing the par­ty, but we’re going to keep it going, we’re not fin­ished yet.

So, we changed the way in which we close off the course. We don’t think about the con­cept of clo­sure in the same way as would nor­mal­ly hap­pen in a group pro­gramme. Whilst the course is under­way, we spend a bit more time real­ly build­ing an idea that they can act as ther­a­pists for each oth­er, with­in the course.  [It’s] kind of co-coun­selling, which is the way we’ve worked out goal-set­ting, how to run goal-setting.

Rather than the health pro­fes­sion­al being in com­mand of the whole process, what we do at the start of the course is try and get across the process by which you can be a coun­sel­lor to the per­son sit­ting next to you, to be a co-ther­a­pist and how you can look after each oth­er. Also to real­ly under­line the impor­tance of social con­tact as being one of the best pro­tec­tors against relapse with chron­ic pain. Which is part of why that par­tic­u­lar group were look­ing after each oth­er so well, sup­port­ing each oth­er when one of them was hav­ing a dif­fi­cult spell

The kind of dia­logues we have towards the end, we start to plant the idea, just past the halfway point, that they can car­ry on with­out us and then build towards an end­point where a deci­sion should have been reached by those in the room about whether or not they want to, and how they’re going to keep going in the absence of the health professional.

Evans: You’re fair­ly unique in what you’re doing here, with patient tutors. How do your col­leagues, the rest of the world if you like, take that on-board?

Ambler: I think they’re intel­lec­tu­al­ly inter­est­ed and we’ve been able to present the find­ings that we’ve had. Con­sid­er­ing that usu­al­ly, you get less than 50% of peo­ple com­ing back for a rou­tine fol­low-up at the end of a course (that’s not just some­thing local­ly, you find that around the coun­try); we got 70% of peo­ple involved in this net­work­ing between each oth­er, will­ing­ly engag­ing with that process, which I still scratch my head in amaze­ment about.

So there’s plen­ty point­ing to this being quite a phe­nom­e­non that should real­ly be tak­ing off, but I think when you’re under pres­sure of ser­vice deliv­ery, get­ting through the num­bers, you stick to what you know. It’s dif­fi­cult to take risks and per­haps that’s con­tribut­ing to the kind of sense of a slow burn with this.

There are plen­ty of peo­ple that want to talk and are inter­est­ed in it, but there hasn’t been the sense of, “there’s a gold mine here”.  It real­ly is some­thing that could make a mas­sive dif­fer­ence to the way in which peo­ple sus­tain the gains, sus­tain the momen­tum of a pain man­age­ment pro­gramme, that’s our feel­ing. There real­ly is some­thing to mine into here.

Evans: That’s Dr Nick Ambler, Clin­i­cal Psy­chol­o­gist and a lead of the North Bris­tol Pain Man­age­ment and Self-Man­age­ment Pro­grammes in the UK and also Assis­tant Psy­chol­o­gist Saree­ta Vyas, who runs the Sleep Man­age­ment Pro­gramme there.

So, cast­ing our minds back to the Inter­na­tion­al Asso­ci­a­tion of the Study of Pain’s 2018 Glob­al Year for Excel­lence in Pain Edu­ca­tion, here’s some­thing for health­care pro­fes­sion­als and pol­i­cy mak­ers to think about. The per­son with pain is not just a patient, but poten­tial­ly is a valu­able resource to help oth­ers. In the words of our patient train­er, Lisa Parry.

Par­ry: It has absolute­ly changed the way I approach things. I’ve got so much more con­fi­dence in myself, in the abil­i­ties that I have. It’s still a learn­ing process for me, I find every course that I do, some­body will come in with some­thing new and I’ll learn from them. It just con­stant­ly helps me reaf­firm my own self-man­age­ment and just giv­ing me the con­fi­dence to try new things and make the move for­ward in life that I real­ly want.


Con­trib­u­tors:

  • Dr Paul Wilkin­son, Direc­tor of pain man­age­ment ser­vices in New­cas­tle and lead of IASP 2018 inter­na­tion­al task force
  • Dr Nicholas Ambler, Clin­i­cal Psy­chol­o­gist and lead of NHS North Bris­tol Pain Man­age­ment Programme
  • Lisa Par­ry, patient and patient train­er at NHS North Bris­tol PMP
  • Saree­ta Vyas, Assis­tant Psy­chol­o­gist and leader of sleep man­age­ment pro­gramme at NHS North Bris­tol PMP.

More infor­ma­tion:

https://painconcern.org.uk/cordless-car-vacuum-cleaner-eraclean-best-handheld-vacuum/