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Transcript — Airing Pain 130: Pain Management Programmes & The Health Unlocked Forum

Scotland’s Pain Man­age­ment Pro­grammes (PMPs) and what sup­port is avail­able after graduating.

To lis­ten to the pro­gramme please click here.

This edi­tion of Air­ing Pain has been fund­ed by a grant from the Health and Social Care Alliance Scot­land Self Man­age­ment Fund  admin­is­tered on behalf of the Scot­tish Government. 

What do you know about Pain Man­age­ment Pro­grammes (PMPs)? Do you know how they func­tion? About the pos­i­tive out­comes they have? Do you know if there are any PMPs near you?

In this episode of Air­ing Pain we learn about PMPs and the sup­port net­works that are being formed as a result.

With the help of Health Unlocked and Alliance Health and Social Care Scot­land, Pain Con­cern have cre­at­ed a small num­ber of online forums. These forums are designed for PMP grad­u­ates in order to stay con­nect­ed. They allow them to con­tin­ue to sup­port one anoth­er once the pro­gramme has end­ed. Grad­u­ates can com­mu­ni­cate with one anoth­er on our Health Unlocked forums. Addi­tion­al­ly, they can also com­mu­ni­cate with the health­care pro­fes­sion­als who deliv­ered their PMP.

So for Pain Con­cern this is a test to see whether forums like these are use­ful! Also, should we cre­ate more?

Paul Evans speaks to Health Unlocked mod­er­a­tor and PMP grad­u­ate Louise Cromie about all things Pain Man­age­ment Pro­grammes. For exam­ple, how sup­port net­works can be key in someone’s pain journey.

Issues cov­ered in this pro­gramme include: pain man­age­ment pro­grammes, self-man­age­ment, sup­port­ing one anoth­er in pain, pain com­mu­ni­ty, pain edu­ca­tion, the spoon the­o­ry, man­ag­ing pain in a cri­sis, fatigue, burnout

Please zoom in if text is too small!

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 those who care for us. I’m Paul Evans. And this edi­tion of Air­ing Pain is fund­ed by The Health and Social Care Alliance Scot­land Self Man­age­ment Fund admin­is­tered on behalf of the Scot­tish Government. 

Louise Cromie: 

We had a mes­sage come via the pain team from Pain Con­cern say­ing we are think­ing that these groups that you guys are mak­ing after your pain cours­es if we had some­where cen­tral that you could all go to then that expe­ri­ence and that shared jour­ney and the shared wealth of knowl­edge from the eight of you could be bigger. 

Evans: 

Pain Con­cern in col­lab­o­ra­tion with the Scot­tish Nation­al Res­i­den­tial Pain Man­age­ment Pro­gramme and the NHS Greater Glas­gow and Clyde Pain Man­age­ment Pro­gramme have devel­oped two sep­a­rate online com­mu­ni­ties that will pro­vide ongo­ing sup­port for those grad­u­ates of the two pain man­age­ment programmes. 

Lou Cromie is a grad­u­ate of the three-week Scot­tish Nation­al Res­i­den­tial Pain Man­age­ment Pro­gramme and she’s a mod­er­a­tor of that forum. 

Cromie: 

My chron­ic pain start­ed just off as an injury when I was 13 and I dis­lo­cat­ed my knee, you know you’re 13 they put it back togeth­er and you kind of got on with things and things just got worse and worse as time went on.  It dis­lo­cat­ed, sub­luxed and we then dis­cov­ered there was a rea­son for all this hap­pen­ing with the leg length dis­crep­an­cy which they couldn’t fix which, in time, caused my pelvis to be out of align­ment which caused my spine to be out of align­ment, which then just caus­es all of its own prob­lems and I end­ed up with com­plex region­al pain syn­drome through­out my whole body as well as osteoarthri­tis in var­i­ous joints, my pelvis, my spine, my knees … 

Evans: 

So you’ve been on a pain jour­ney from the age of 13 when your teens started? 

Cromie: 

Pret­ty much. And you don’t realise at 13 that this is the rest of your life. You think at 13 you are start­ing out. My plans – you know I used to do run­ning and every­thing, I loved it.  And you push through these things when you’re 13 and you’re 19 and your 20s and your 30s but then you release that you can’t push through it any more and it’s too much and it gets on top of you and life stops hap­pen­ing so you have to do some­thing about it. 

Evans: 

At what age was it decid­ed that you had to do some­thing about it? 

Cromie: 

I had just had my chil­dren at 30 and I was maybe about 34/35 and things were get­ting unman­age­able and when I realised I couldn’t get down on the floor to play with my chil­dren, I couldn’t run after them in the park, the pain was, it was more about, you know, what I could do to try and get out of bed to actu­al­ly do any­thing rather than the joy of get­ting out of bed to have a day at work or a day with the kids.  That was when I would say some­thing needs to be done here and you do the whole bounc­ing round all the doc­tors and the GPs before you final­ly end up at a pain clinic. 

Evans: 

Hav­ing all those con­di­tions what help were you get­ting up to that point? 

Cromie: 

My GP was good in as much as he would see me and he would lis­ten and he would try to do what he could as a Gen­er­al Prac­ti­tion­er but he wasn’t a spe­cial­ist so he would refer me on and you would see orthopaedics, you would see endocrinol­o­gy just in case it was some­thing like rheuma­toid arthri­tis and you got passed around the hous­es and passed around all the depart­ments with the ‘well your scan’s clear, there’s noth­ing on your scan’ or ‘well, yes there’s a lit­tle bit of dete­ri­o­ra­tion, maybe more than we’d think for some­body your age but it shouldn’t be caus­ing you this amount of pain’ and I’m fair­ly cer­tain every­one who’s been on a pain jour­ney has had this and you just whack up against every brick wall that the med­ical pro­fes­sion has. They can’t fix it they expect you just to live with it. 

Evans: 

So, you were being treat­ed for x num­ber of con­di­tions rather than one con­di­tion which is pain. 

Cromie: 

That’s right, yeah. If they couldn’t find a phys­i­cal cause you almost felt like they were mak­ing you think it was in your head.  You real­ly start to doubt your­self and you think ‘Am I imag­in­ing this, is this in my head?’ but you know it’s not because when you are phys­i­cal­ly black­ing out from pain, when you are hav­ing pain spasms that are last­ing 3, 4, 5 hours and you are in tears and gasp­ing for breath you can’t make that up.  Your pulse goes through the roof, you break out in pain sweats and it wasn’t until some­body final­ly says ‘I think we’re going to refer you to the Pain Team because there’s noth­ing else that we can do’.  And I thought ‘There’s a pain team!  There’s a team that actu­al­ly deals with this and I’m only see­ing them now!’ [Laughs] 

Evans: 

That expres­sion ‘there’s noth­ing more we can actu­al­ly do’. That’s a brick wall real­ly, isn’t it? 

Cromie: 

It is, it is and I think every­one who gets to a pain team has hit that brick wall.  They have been bang­ing their head against it for years.  And I can see from a point of view the med­ical pro­fes­sion­als on the oth­er side of that wall putting it up.  There is noth­ing that they can do because some­times what is wrong you can’t see on an X Ray, you can’t see on a CAT scan you can’t see on an MRI.  Pain is very, very com­plex and it does take a cer­tain, I think, mind­set and under­stand­ing to work out what caus­es it, why it impacts the way it does and what you need to do to be able to man­age it.  And you’re not going to get rid of it but it can be man­aged and you can live with it. 

Evans: 

So, you’ve arrived at your brick wall and they’ve referred you to a pain team. What hap­pened then? 

Cromie: 

The first thing that hap­pened then was appre­hen­sion, think­ing how’s this going to go, and then the utter relief and break­ing down in tears, I can remem­ber to this day sit­ting in my consultant’s office when she said ‘I believe you, I believe the amount of pain that you are in, it is real’. Just that acknowl­edge­ment, that accep­tance, the val­i­da­tion that every­thing that I had been say­ing to all these oth­er doc­tors who were say­ing ‘but there’s noth­ing there’.  No, it was real.  And then she explained why I was feel­ing pain and explained why nobody else was pick­ing up on it and that helped me under­stand and because I could under­stand it I could accept it.  And because I could accept it, I could then move on in the jour­ney to try to man­age it. 

Evans: 

What did she mean by it when you said ‘why nobody else picked it up’? 

Cromie: 

The mind­set a lot of the doc­tors seem to have is they are look­ing for phys­i­cal con­di­tions, they are look­ing for a phys­i­cal cause and some­times in pain the phys­i­cal cause is so small it doesn’t show up.  You could maybe catch it on a func­tion­al MRI scan and that’s where you actu­al­ly see the part of the brain fir­ing off in colour so you can actu­al­ly see the reac­tion in the brain to what’s hap­pen­ing in the body.  They are very, very, very, very hard to come by so because these doc­tors, who are great at their jobs, because they don’t see lesions, they don’t see a bro­ken bone, they don’t see a torn mus­cle, they are at a brick wall so for her to be able to say well actu­al­ly what’s hap­pen­ing is your brain is per­ceiv­ing pain because it’s get­ting flood­ed with pain mes­sages com­ing from your nerves, and it’s get­ting flood­ed with mes­sages, rather, and your brain is inter­pret­ing it as pain.  OK so there is actu­al­ly some­thing hap­pen­ing, it is going to my brain, my brain say­ing this is pain but nobody can see it because these mes­sages are so small.  They’re tiny elec­tri­cal signals. 

Evans: 

It’s all very well for your expe­ri­ence of pain to be val­i­dat­ed and to have it explained to you why it is pain but where does that lead you. 

Cromie: 

So, when you know it’s real then you can do some­thing about it.  The approach that our pain team used in the Bor­ders is a biopsy­choso­cial approach so you learn a bit about the biol­o­gy, you learn a bit about the psy­chol­o­gy behind it and the social impact that it has.  And when you under­stand why these things hap­pen the way they do and why we typ­i­cal­ly respond to these things the way that they are hap­pen­ing, we can then adjust how we react to things.  So instead of hav­ing the days where, and you got them occa­sion­al­ly, the days when you’d wake up and you’d think wow I feel I could actu­al­ly do some­thing today and you go hell for leather and you’re just out there and you do every­thing you can, you get the house cleaned, you go and do the shop­ping, you know, you go and see friends that you’ve not seen for ages and then the next day and the day after and the day after you pay for it. 

So, this boom-and-bust cycle that you have of, you know, ‘I’m going to go for it’, and then you flop, that doesn’t work.  What you are look­ing to do with this whole biopsy­choso­cial approach is try­ing to, instead of going from this roller coast­er where we’re sort of up and down and up and down, you want to go on a sort of mer­ry-go-round.  So, you’re still going up and down like those carousel hors­es do, you are still going to go up and down but it’s a smoother jour­ney, you go round and round, it’s a much smoother jour­ney, you’ve got more con­trol over it.  So, you are maybe still doing things on the days where you’re sore, you’re not lying down to it but on the days that you’re good you are pac­ing your­self, you’re not going mad so that you know the next day you’re not going to have to recov­er.  And it just makes such a dif­fer­ence, you learn to man­age your pain so it’s not man­ag­ing you and that gives you a life back and when you’ve had your life snatched away from you by pain for 10, 15, 20 odd years it’s a gift just to sud­den­ly have that under­stand­ing and the knowl­edge and the pow­er to be able to say ‘no I’m hav­ing my life back’.  I’ll still have my pain but I’m man­ag­ing it, it’s not man­ag­ing me. 

Evans: 

That sounds absolute­ly great and it’s fine but the biopsy­choso­cial, the social side of it doesn’t always fit a neat plan.  Now I know that you were in a den­tal cri­sis with your child yes­ter­day, that wasn’t in the pain hand­book.  How do you cope with things like that? 

Cromie: 

Well, that’s life, life hap­pens, that hap­pens to every­body whether you have pain or not and we all have a toolk­it whether you have pain or not.  We have tool­box­es. When you’ve got pain you’ve just got to adapt your tool­box a lit­tle.  So, for exam­ple, if I was a healthy, hap­py nor­mal work­ing per­son I would phone my work and say, sor­ry I’ve got a cri­sis with my child, I need to take some per­son­al time. So as some­body who isn’t able to go out to work, I need to say to myself, ok, I can’t do what I was plan­ning to do today I’m going to have to put my ener­gy and resources into this, which means I’m going to have to cut back a lit­tle bit lat­er on from some­where else.  And there’s a the­o­ry called the Spoon The­o­ry which real­ly helps with this and I’m fair­ly cer­tain that any­body that has pain has heard of the Spoon The­o­ry. This is one of these occa­sions where you bor­row some spoons. You know you might pay for it a lit­tle but there are things that you have to make the judge­ment. It’s worth pay­ing for.  Espe­cial­ly when it’s comes to things like your child.  [Laughs] 

That can work for, you know, if you have a wed­ding to go to. You know that you might pay for it after­wards but the ben­e­fits you get from being able to have a lit­tle bit of life can get you through these lit­tle tough days after­wards.  It is a bal­ance, it’s all about pac­ing and it’s not easy.  It’s very much a case of putting it in to prac­tice and find­ing out what best approach works for you and it takes time. 

Evans: 

All this stuff, all this pac­ing and boom­ing and bust.  How was that taught to you, how did you find out about that? 

Cromie: 

My pain con­sul­tant had sug­gest­ed I go on a pain man­age­ment pro­gramme. Now when she said this I thought OK tell me about it.  So she says well we get a group of patients and we sit around and we dis­cuss the the­o­ries of pain and we talk about how we man­age pain and I am sit­ting there going ‘Yeah.  Not for me thank you very much’.  I’m very much one of these peo­ple when you go on hol­i­day and they have the organ­ised resort activ­i­ties to do on hol­i­day and I’m like ‘Yeah no I’ll just sit at the bar thanks. Crack on’. So the idea of sit­ting in a room full of oth­er peo­ple who were all suf­fer­ing, all of us sit­ting whing­ing about our pain was not float­ing my boat at all.  And my con­sul­tant tried for 8 years to get me to do a pain course. She nev­er forced it.  She just every time I saw her and we had our reviews she’d say ‘have you giv­en any more thought …’ I was like ‘yeah, you know what it sounds good for some peo­ple but not for me thank you very much’. And it took me hit­ting rock bot­tom to actu­al­ly say to her ‘look I need to do some­thing.  Give me this pain course’. 

Evans: 

Was that a res­i­den­tial pain course? 

Cromie: 

Ini­tial­ly the course that I’d done with the Bor­ders Gen­er­al Hos­pi­tal it was over ten weeks and it was maybe two hours, one to two hours a week every week for ten weeks. It was good because it wasn’t over­whelm­ing. You had time to process things dur­ing the week and it wasn’t exhaust­ing. But I did even­tu­al­ly go on to do a three-week res­i­den­tial course with the Scot­tish Nation­al Res­i­den­tial Pain Man­age­ment Pro­gramme in Glas­gow.  So that was very much the same prin­ci­ples but they were show­ing you how to put the prin­ci­ples in to prac­tice, giv­ing you actu­al phys­i­cal tools — you’ve dropped some­thing on the floor you need to get down on the floor and you need to get back up. How do you do it?  Sim­ple things that we all do, or all need every day and it helped cement every­thing that I had learned over the ten weeks with the Bor­ders team as well. 

Evans: 

That’s over­com­ing sort of phys­i­cal prob­lems.   Pick­ing things up. But what about the psy­cho, the psy­cho­log­i­cal, your mind. How did they help you put your mind in a dif­fer­ent place? 

Cromie: 

Every team that’s a pain team has a psy­chol­o­gist on it and they are very much aware of what pain does to us.  Where pain puts us.  And my psy­chol­o­gist knows I have absolute­ly no qualms. If I didn’t have my fam­i­ly here I wouldn’t be here, I would take the exit door because my fam­i­ly make my life worth car­ry­ing on with. That’s how bad things can get.  But they under­stand this and they lis­ten.  And they don’t judge and they help us realise that, well maybe you need to find some­thing for your­self, yes you’re man­ag­ing your pain or you’re try­ing to man­age your pain and you’re try­ing to do it for your fam­i­ly but what are you doing for you because peo­ple with pain tend to end up putting them­selves on the back burn­er because we get used to putting a mask on for friends and for fam­i­ly. So, you walk around with this mask. My fam­i­ly are quite good.  They can see when I have it on but you will see friends and they’ll say ‘oh wow I’ve not seen you for ages you’re look­ing great, it’s great you are feel­ing so much bet­ter’ and you’re think­ing ‘no I’m not real­ly’.  [Laughs]. But your psy­chol­o­gists on these teams help you realise that it’s ok to low­er the mask and it’s ok to say, you know, it’s not good just now but I can do this for me.  So, for exam­ple, one of my things, I’ve start­ed an Open Uni­ver­si­ty degree.  At 45 I’ve decid­ed I’m going to get a degree.  I have some­thing for me now.  So, the psy­chol­o­gy team help you put you in focus again, help keep you in focus and keep the balance. 

Evans: 

Low­er­ing that mask, I guess, is a skill in itself because you could low­er it and just be labelled a ‘Moan­ing Min­nie’ — ‘leave her alone, come on let her get on with it’. 

Cromie: 

And that’s scary.  When you have pain you find out who your true friends are and you find out the peo­ple that actu­al­ly lis­ten to what you say and it’s not easy to low­er the mask and to reveal what’s real­ly going on but the per­cent­age of peo­ple in our coun­try that are liv­ing with chron­ic pain is way high­er than peo­ple realise.  There are a lot of masks being worn out there.  Wouldn’t it be nice if we could all just see each oth­er, realise, you know, they’re strug­gling.  What can I do to maybe help them a lit­tle bit, to make their day a lit­tle bit bet­ter, a lit­tle bit eas­i­er. And maybe if we didn’t all have our masks on all the time, we might be able to achieve that. 

Evans: 

Well, I mean I have chron­ic pain. I have fibromyal­gia and I‘ve found that one of the worst things, that real­ly annoys me, and I don’t know how to cope with, is peo­ple say­ing’ how are you feel­ing’ because the answer is ‘rub­bish’.  

Cromie: 

Well, the answer is always ‘rub­bish’. I have cir­cles. My inner cir­cle, my very core of my cir­cle, I have my imme­di­ate fam­i­ly, and then my next cir­cle out are my best friends, the ones who I don’t need to wear a mask around, and then the next group out I have peo­ple who, you know, maybe peo­ple I know from church that I’ll have a lit­tle bit of a mask on. They know what my sit­u­a­tion is but they try to stay pos­i­tive, it’s com­ing from a good place, you know I’ve got neigh­bours, it’s com­ing from a good place.  They’ll do the, you know, ‘how are you feel­ing’ and you’re like ‘well you know, I’m here which is some­thing that hasn’t hap­pened for a while’ or, you know, well ‘it’s amaz­ing what make-up can do’.  I have lit­tle retorts.  The fur­ther out my cir­cles go the more my mask will stay on because there are some­times you get peo­ple that are just, ‘have you tried yoga?’ or ‘have you had this diet?’ or ‘I’ve ‘well heard med­i­ta­tion works won­ders’ and those peo­ple you kind of keep the mask on and you think to your­self ‘is it worth my ener­gy get­ting riled up, get­ting in to a debate, get­ting in to an argu­ment’ — because that’s exhaust­ing – or is this some­body that I could just kind of say, ‘look do you know what that’s a great idea, I’ll have a think about it’ and move the con­ver­sa­tion on gen­tly.  So you choose who you keep your mask on around, I think, and that’s one of the things that I’ve learned on my pain course. 

Evans: 

That’s a real­ly good tip because the num­ber of times some­body will come up to me, or oth­er peo­ple with chron­ic pain, and say ‘oh I’ve read an arti­cle in the Dai­ly Blurb that says some­thing about putting a peb­ble in your shoe.  Have you tried that, I’ve kept the clip­ping for you’. 

Cromie: 

I know [laughs] and you just, inside of you, you just want to grab them and shake them and say ‘it’s not like that’.  But you know [laughs] the beau­ty about hav­ing pain is that we have mas­tered an inner mono­logue when we have pain.  I just need to remem­ber some­times I have to turn my inner mono­logue on and off.  But yes some­times we can have the inner mono­logue of ‘peb­ble in my shoe, real­ly?  Tell you what I’ll take the con­crete ones off first and then I’ll try a peb­ble’ but you’re like ‘how very inter­est­ing’.  Is this per­son actu­al­ly worth this dis­cus­sion, worth my ener­gy or am I just going to say ‘how inter­est­ing’ and move the con­ver­sa­tion along [laughs].  

Evans: 

I just need to say that hav­ing a peb­ble in your shoe is just pure fan­ta­sy from my lit­tle brain [laughs]. 

Cromie: 

Well do you know if I could trade what we are, I’m sure you would be the same, if you could trade what you are liv­ing with to hav­ing to walk around for the rest of your life with a peb­ble in your shoe, I know I what I would choose.  I’d have that peb­ble in my shoe [laughs]. 

Evans: 

Well now you’ve broached on this as well. How does your fam­i­ly, your teenage chil­dren … I mean who edu­cates them about your pain and how to deal with you? 

Cromie: 

I have. And also, my pain team because we have ses­sions where they can come along and learn about pain.  My son has done his Duke of Edin­burgh Vol­un­teer­ing sec­tion for his Duke of Edin­burgh Award with my phys­io­ther­a­pist as his instruc­tor so that he can help me do phys­io­ther­a­py at home.  But I’m the one who has taught them about it. That was some­thing I learned on my pain course because all they ever saw was mum’s sore or my hus­band would say, you know, I’m real­ly, real­ly sore. They would see the results, the end result, the cry­ing, blub­ber­ing mess or the per­son that couldn’t get out of bed. 

The oth­er thing they would do is try and do every­thing for you which is com­ing from a good place. And when you’ve done your pain course you realise that actu­al­ly you need to be doing some things for your­self. You know you can’t lie down to your pain and hav­ing to say to them ‘actu­al­ly thank you but I’m going to go and try and make myself a cup of tea — would you like one?  I might need you to car­ry them through’.  ‘Oh but mum, mum I can do it, you relax it’s fine’ it will be sure.  Yes but I need to be mov­ing, I need to be doing things so by edu­cat­ing them what I need to do, why I need to do it, they have then went [sic] ah ok so you are doing that for this rea­son, I’ll sup­port you by doing what? What do you need me to do? What would you like me to do rather than the brain of a child or a hus­band say­ing ‘I’ll do it for you’ because it’s eas­i­er.  Tell them what you need.  Com­mu­ni­ca­tion is a big part and that’s some­thing you get very iso­lat­ed on a pain jour­ney before you take con­trol. You don’t com­mu­ni­cate very well. We like to keep it all to our­selves because we don’t want to be the Moan­ing Min­nie or the whinger. 

Evans: 

Right, you’ve been on the three-week res­i­den­tial pain man­age­ment pro­gramme.  What’s on my mind is that being locked away, if you like, with like-mind­ed adults for three weeks — at the end of it you’re all wound up and ‘yes’ yes we’re ready to go now’ and then the gang plank is pulled away from under­neath you. You have to go back to real life. 

Cromie: 

To real life.  Well our par­tic­u­lar course actu­al­ly hap­pened just before Christ­mas so we fin­ished our course and we had Christ­mas, we had New Year and you know how every­body has that slump in Jan­u­ary?  We were all like, oh, we were exhaust­ed after Christ­mas and New Year, every­thing just seems bor­ing and blue and you know the pay check seems miles away. 

Imag­ine hav­ing that after hav­ing had three weeks of pos­i­tive ‘we can do this’ men­tal­i­ty.  We were all just like ‘oooohh­hh arrrgh could we get any low­er’ but we reached out to each oth­er because we had formed a lit­tle group, we kept a lit­tle What­sapp group going and we’d be like, you know, ‘I’m strug­gling, is any­one else hav­ing this strug­gle just now’.  ‘Oh gosh yes I am’. And the mes­sages would flood in. There were only eight of us on this course and to just know that this is nor­mal, this is ok I’m not the only one feel­ing this, this is real, this is jus­ti­fied and valid. 

We kept each oth­er going through that and because we had each oth­er to lean on it wasn’t a soli­tary dark Jan­u­ary any more or a soli­tary dark life after pain clin­ic.  We kept each oth­er going and we had fol­low-ups with the pain clin­ics at three months and six months and that’s some­thing that they had said that they noticed that patients bond with each oth­er, form a group and that helps keep us going because when you get to the stage of ‘guys I need to do this and I’ve got no idea where to start, I’m so exhaust­ed, my head is sore, I’m not cop­ing well’ some­body in the group has the answer.  Or, at least, has an idea of where to send you for the answer so hav­ing that sup­port struc­ture the ‘gang plank’ wasn’t real­ly tak­en away. We actu­al­ly had a bridge built so we had a mes­sage come via the pain team from Pain Con­cern say­ing we are think­ing that these groups that you guys are mak­ing after your pain cours­es, if we had some­where cen­tral that you could all go to then that expe­ri­ence and that shared jour­ney and the shared wealth of knowl­edge from the eight of you could be big­ger.  Your bridge could go from being a cou­ple of metres wide to sev­er­al Forth Road Bridge sizes wide. 

We went along to have a meet­ing and a focus group and dis­cussed what would work and what wouldn’t work and what we would want to see and what we thought we would need and the project devel­oped and the Board became in to being and we start­ed look­ing for peo­ple to help keep it going in the right direction. 

Evans: 

Before we go on, I’ll just remind you as usu­al 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 well-being.  They are the only peo­ple who know you and your cir­cum­stances and, there­fore, the appro­pri­ate action to take on your behalf. 

Do check out Pain Concern’s web­site at painconcern.org.uk where you can down­load all edi­tions of Air­ing Pain and find a wealth of sup­port and infor­ma­tion mate­r­i­al about liv­ing with and man­ag­ing chron­ic pain. 

Now the online forums we’ve been talk­ing about in this edi­tion of Air­ing Pain are restrict­ed to those who’ve been through the Scot­tish Nation­al Res­i­den­tial Pain Man­age­ment Pro­gramme or NHS Greater Glas­gow and Clyde Pain Man­age­ment Pro­gramme.  So con­tact your pain man­age­ment team to find out how to join. 

Lou Cromie, who I’ve been talk­ing to, is the Mod­er­a­tor for the Res­i­den­tial Pro­gramme Forum.  What does that mean? 

Cromie: 

We try to keep the Boards flow­ing, we try to respond to every post that comes up, make sure that nobody feels alone — there’s always a response there.  We try to keep the Boards a safe place not just for if some­body is real­ly, real­ly strug­gling, you know we will reach out and try and get them help that they need, but also if we see con­ver­sa­tions start­ing to wind off, as you may see on oth­er social media groups, you go down for six hours some­times where the con­ver­sa­tion wad­dles off into the realms of fan­ta­sy almost, we try to stop that hap­pen­ing, try to keep it real and accu­rate.  Life isn’t just about pain when you have pain. Some­times we need to have fun and games too so, I throw in the odd fun thing on our Board, get some jokes and some lit­tle quizzes and things going too. 

Evans: 

I mean this is new to me because I’d assumed the chief func­tion of a Mod­er­a­tor was cen­sor­ship to stop all those bark­ing peb­ble theories. 

Cromie: 

If some­body said to me ‘I’ve got chron­ic pain and I’ve tried this peb­ble the­o­ry’ I’d be like ok – as a mod­er­a­tor thing eh how accu­rate is that but right you can steer it but ‘oh so where did you hear about it, do you know of any clin­i­cal research papers there are, let’s see if we can find some sol­id evi­dence, some sol­id research and we’ll put that on the Board and every­body can have a look at the research’.  If it’s some­thing valid, prop­er­ly con­duct­ed clin­i­cal research then why not leave it up there, let peo­ple have a think about it, let them read the research and make their own deci­sions.  It’s about direct­ing. It’s not about cen­sor­ship, it’s more about steer­ing things in the right direc­tion, keep­ing it out of the rapids. 

Evans: 

What con­trol, if con­trol is the right word, do the health pro­fes­sion­als have. 

Cromie: 

They’re effec­tive­ly mod­er­a­tors as well. It’s great hav­ing them there because they will prob­a­bly be more aware of new research with­in the pain area so they’ll share lit­tle snip­pets that they find but they don’t cen­sor any­body, they don’t turn round and say you’re doing this wrong.  There is no real wrong.  They help guide us when we real­ly start to strug­gle but most­ly it’s patients help­ing patients. 

Evans: 

I think that’s inter­est­ing as well because I’m sure lots of peo­ple with pain might think this – ‘What if there’s a cure and nobody has told me about it.  What if there’s a new treat­ment and nobody has told me about it’.  I sup­pose keep­ing in touch with those in the health­care, health­care pro­fes­sion­als, does keep you in touch with cur­rent practice. 

Cromie: 

It cer­tain­ly does and they are as pas­sion­ate about pain as we are.  They are hap­py to shout from the rooftops when they hear about some­thing new, that’s positive. 

Evans: 

The great thing is that you can trust this forum — the world­wide web is a big place and you can get a lot of bad infor­ma­tion.  Your forum is to be trusted. 

Cromie: 

Yes, it’s a safe place.  We’re not going to have rab­bit holes that you fall down on the world­wide web. You know that every­body in this forum have all been on the same type of pain course.  We have all learned the same thing, we all have the same basis and same ground­ing.  We all have the same basic knowl­edge.  We have pro­fes­sion­als there to sup­port us, we’re all singing from the same hymn sheet which is great because that helps us all keep going in the same pos­i­tive direction. 

END 

Con­trib­u­tors:  

  • Louise Cromie is a cur­rent Mod­er­a­tor for the Health Unlocked Forum. She is also a grad­u­ate of a Pain Man­age­ment Programme. 

More infor­ma­tion:  

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With thanks to: 

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