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Transcript — Airing Pain 119: Experts By Experience: Working Together In Pain Management Programmes

Patient vol­un­teers and health­care pro­fes­sion­als on work­ing togeth­er in pain man­age­ment programmes

To lis­ten to the pro­gramme, please click here.

This edi­tion of  Air­ing Pain has been sup­port­ed by a grant from the Plum Trust. 

In Sep­tem­ber, the British Pain Society’s spe­cial inter­est group on pain man­age­ment pro­grammes held their annu­al con­fer­ence. A work­shop enti­tled ‘Experts by Expe­ri­ence – Work­ing Togeth­er in Pain Man­age­ment Pro­grammes’ was run in par­al­lel to this. The sym­po­sium brought togeth­er patient-vol­un­teers and health­care pro­fes­sion­als from four pain man­age­ment cen­tres around the UK to share their expe­ri­ence of work­ing together. 

Dr Nick Ambler, Con­sul­tant Clin­i­cal Psy­chol­o­gist of the North Bris­tol NHS Trust’s Pain Man­age­ment Pro­gramme (PMP), facil­i­tat­ed the work­shop; chair­ing an uplift­ing, frank and empow­er­ing dis­cus­sion on the psy­cho­log­i­cal ben­e­fit to patients and the pro­fes­sion­al val­ue to health­care trusts of patient-vol­un­teers work­ing with­in pain man­age­ment pro­grammes. This spe­cial extend­ed edi­tion of Air­ing Pain comes to you live from the con­fer­ence, let­ting you sit in on the discussion. 

Patient-vol­un­teer Prim­rose Granville opens by giv­ing a fun­ny, relat­able and inspir­ing tes­ti­mo­ny of how vol­un­teer­ing with her PMP has trans­formed and empow­ered her life and expe­ri­ence of pain. 

Dr Deb­bie Joy, Clin­i­cal Psy­chol­o­gist and Clin­i­cal Lead of Pain Ser­vices for NHS Solent Trust, address­es some of the ini­tial anx­i­eties she had around the intro­duc­tion of patient-vol­un­teers to a clin­i­cal set­ting, but ulti­mate­ly asserts that they are ‘def­i­nite­ly stronger with experts by expe­ri­ence by their side’. 

Pain coach­es for NHS Dorset – Pen­ny and Deb­bie – offer con­struc­tive advice for pro­fes­sion­als and vol­un­teers on how you pain coach and engage with peo­ple liv­ing with pain effec­tive­ly and sympathetically. 

The founder of Glas­gow Com­mu­ni­ty Pain Edu­ca­tion Ses­sions – John Brem­n­er, talks about how this mod­el of expert by expe­ri­ence in action works, and how they run it eth­i­cal­ly and effec­tive­ly. Lind­say talks about how reward­ing an expe­ri­ence it has been, vol­un­teer­ing as a pain train­er for this ini­tia­tive, encour­ag­ing oth­ers to get involved. 

The sym­po­sium ends with the group shar­ing their expe­ri­ences and insights in an open floor discussion. 

Con­tact your GP or rel­e­vant pain man­age­ment pro­gramme if you are inter­est­ed in volunteering. 

Issues cov­ered in this pro­gramme include: Peer sup­port, com­mu­ni­cat­ing pain, com­mu­ni­ty health­care, con­fi­dence, employ­ment, gabapentin, laugh­ing yoga, osteoarthri­tis, patient vol­un­teer, Scot­tish par­lia­ment, sup­port group, train­ing course, vol­un­teer­ing and work­shops. 


Paul Evans: This is an extend­ed edi­tion of 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.  This edi­tion of Air­ing Pain is being sup­port­ed by a grant from the Plum Trust. I’m Paul Evans. 

In Sep­tem­ber 2019 the pain man­age­ment pro­gramme spe­cial inter­est group, The British Pain Soci­ety, held its 17th Nation­al Con­fer­ence in Bris­tol.  Run­ning in par­al­lel to this event was a work­shop in which patients and prac­ti­tion­ers from four dif­fer­ent pain man­age­ment cen­tres around the UK shared their expe­ri­ence of work­ing togeth­er.  The work­shop, Experts by Expe­ri­ence — Work­ing togeth­er in Pain Man­age­ment Pro­grammes was facil­i­tat­ed by Con­sul­tant Clin­i­cal psy­chol­o­gist Dr Nick Ambler of the North Bris­tol NHS Trust’s Pain Man­age­ment Programme. 

Dr Nick Ambler: Thank you so much for com­ing along today. This event is intend­ed to be help­ful to peo­ple who are think­ing about get­ting involved in ser­vices.  It’s meant to be help­ful to pain pro­fes­sion­als who real­ly should be think­ing about greater, deep­er lev­els of involve­ment with ser­vice users and because our expe­ri­ence, and oth­ers in the room, has been such a fab­u­lous one real­ly.  We just want to encour­age oth­ers and I am mys­ti­fied about why that doesn’t hap­pen more often than it does. So, the pur­pose was to present four exam­ples of where it’s kind of vibrant, it’s real­ly up and run­ning, and we will be begin­ning with one from Prim­rose, Prim­rose Granville who works with us here.  This process is fol­low­ing a plan of some­thing that I have been doing in hos­pi­tals, with hos­pi­tal teams, for some time now. They call it a Schwartz Round but the idea of it is that, when you are look­ing for inspi­ra­tion, and try­ing to find new direc­tions in a thing, do a pre­sen­ta­tion that sparks off an informed audi­ence, which is you by the way, to get them think­ing, to get it to trig­ger off mem­o­ries and rec­ol­lec­tions of their per­son­al expe­ri­ences, to begin a sin­gle con­ver­sa­tion at the end of it which gen­er­ates ideas and that’s what we are try­ing to capture. 

OK, with­out more ado can I intro­duce Prim­rose Granville. 

[Applause]. 

Prim­rose Granville: Good morn­ing every­one and if I said I wasn’t ner­vous I would be lying.  I am here to share with you my sto­ry, my jour­ney, why I am a Pain Man­age­ment, I’m going to say PMP, because we all know what that is don’t we, a PMP vol­un­teer, why I have been doing it for six years, why I nev­er make any appoint­ments for a Wednes­day morn­ing – it doesn’t mat­ter whether or not there is a course going on – I just don’t.  It’s just become sec­ond nature to me. 

So, I have been on two pain man­age­ment cours­es. So, I went to one in the ‘old days’.  That course didn’t do any­thing for me.  It was pure­ly instruc­tion­al. I felt like I was in High School again being forced to do Maths which I hate.  So, I went because I am a good patient and I lis­ten to the doc­tors and I go and I don’t want any­body rap­ping me on the wrists so I just go.  And I got noth­ing from it.  Absolute­ly nothing. 

Fast for­ward a cou­ple of years.  Any­one know Dr Greenslade?  Yes. So, he con­vinced me to go on a sec­ond one and we had a real­ly long con­ver­sa­tion.  It ranged from arti­cles in The Guardian to arti­cles in The Sun where he was actu­al­ly try­ing to con­vince me to go on a sec­ond course and I was like, ‘Uh uh, no I am not doing that.  Give me the mag­i­cal pill and I’ll be fine. Give me surgery.  Give me any­thing’.  And he’s like no.  ‘You have had the surgery – you do need to go on anoth­er pain man­age­ment course.  I promise you it’s dif­fer­ent’. I didn’t believe him. And I turned up Week One, Two and then in Week Three that gen­tle­man there who is try­ing to hide, Rob, who you all know, changed my life with five sim­ple words.  ‘I still live with pain’.  Those were the five sim­ple words that lit­er­al­ly changed my entire life.  And then he start­ed talk­ing about all kinds of things that he did and I’m like, ‘I was stuck on ‘I still live with pain’.  And I remem­ber leav­ing the room with my pain friend, and we used to give a lot of trou­ble in the course yeah, we were the talk­a­tive ones.  And we were sit­ting in my car, because I was tak­ing her home that evening, and we were like ‘so we can do stuff with this pain’ — because the pain was con­trol­ling my life.  And one of the things I want­ed to do —  my only god daugh­ter lived 146 miles up the M4 and the A13 in deep Essex. Why her par­ents choose to live there I don’t know. And I want­ed to be able to get in my car and do the jour­ney from begin­ning to end and just not stop. And he spoke about going down the M5 to Corn­well and how he had to stop sev­er­al times. And I thought ‘oh my god – stop sev­er­al times.  Who does that’. But I heard him out and it was like ‘wow’.  So, he changed my life with his exam­ples but he got me with those five words and I thought, ‘hmn’.  So you know at the end when they give you that that won­der­ful ques­tion­naire that we all love to fill out – the big long one that looks like an epis­tle – and you got to that last ques­tion which said ‘Do you think you could vol­un­teer here’ or some­thing like that, and I con­sult­ed with my friend and she said ‘Oh it’s too much’ and I said ‘I’m going to try’.  And I ticked the box and they phoned me the fol­low­ing week and I was like ‘they don’t hang about’. 

[Laugh­ter] 

So, I kind of want­ed to see what it was like from the oth­er side, how I could impact some­body else the way Rob had impact­ed me with his sim­ple exam­ple, his sim­ple words, his ‘I still live in pain but I actu­al­ly have a life that I enjoy’. 

You know I used to be an ear­ly years’ teacher but they took my job they said my job was too dan­ger­ous for me, or I was a dan­ger to the job – it was one of those ways, I can’t remem­ber but I remem­ber being very depressed about it like, ‘You know how long I went to col­lege for this stuff, I’ve been teach­ing for 12 years – what do you mean I am dan­ger­ous to the job or the chil­dren are dan­ger­ous to me’.  And I remem­ber I had a son at the time who was round about the same age as my chil­dren and I remem­ber that I was off work for a lot and I thought ‘I won­der how I would feel if Mrs Bar­well was not in school two days out of every week’. I put myself in my son’s shoes and then I thought actu­al­ly Bris­tol City Coun­cil is not that hor­ri­ble.  You know they’ve not kicked me out because they think I am use­less.  They’ve kicked me out because — they’ve not even kicked me out – they’re try­ing to save me, the per­son. I am sure a lot of you in this room will under­stand the impact of being told you can’t work any­more, you’re not employ­able.  You know unem­ploy­ment is one thing but not being employ­able is a total­ly oth­er sto­ry.  It’s a case of ‘You are use­less’ and this hap­pened round about the same time when our love­ly for­mer Prime Min­is­ter, David Cameron, came up with the word ‘scroungers’.  And here I was, on ben­e­fits – a scrounger. Yeah all I need­ed was a hood­ie and I’d be the hood­ed scrounger. But I hate hoodies. 

[Laugh­ter].   

So it was a dark time and I’m glad I met Rob, because I’m glad I vol­un­teered because I felt valu­able. I was turn­ing up on Wednes­day and when I wasn’t well they missed me.  And that’s my ‘why’ — I feel like I am doing some­thing that’s worth­while to some­one else. And that is why I turn up.  It was only last week that I thought I could actu­al­ly claim my expens­es for my petrol because I didn’t even know. Because I don’t turn up for any­thing but to give of myself and to strength­en some­body else’s life, you know, make you feel bet­ter about your­self. I don’t know if any of you have patient-vol­un­teers in your room but it real­ly made my expe­ri­ence dif­fer­ent and I can say that with cer­tain­ty because the first course had none. 

So that’s why I know it’s dif­fer­ent. And that’s why I know the val­ue of a patient-vol­un­teer. I prob­a­bly don’t know my own val­ue but I know that when I turn up there it’s because I want to improve some­body else’s out­look. I want some­body to take on the tool­box that I got. 

But let’s get back to the train­ing. The train­ing is very impor­tant. So, I was ter­ri­fied when I heard the words ‘train­ing to be a pain man­age­ment vol­un­teer’. I thought they were going to train me to be a doc­tor [laugh­ter], and I don’t like sci­ence. So, I didn’t want to learn all the sci­ence bits. So, I thought I was going to go and do this great big course on being a doc­tor or a phys­io­ther­a­pist or a psy­chol­o­gist and I was like ‘Oh God it’s going to be so …, it’s going to be so hard and com­pli­cat­ed’ and it wasn’t.  It was a train­ing about my expe­ri­ence impact­ing some­one else just like me. 

Are there any patient-vol­un­teers in here?  Have you had the train­ing with Bev and Maz?  It’s cool isn’t it!  It real­ly is cool.  But I did that train­ing and I enjoyed it and the morn­ing of the first course any­body here who is a patient-vol­un­teer arrived at that course think­ing ‘I’m leav­ing, I’m chip­ping from this room with­in the first half an hour’  [laugh­ter] Did any­body feel like that?  That’s how I felt. There was no way I was going to go in to that room and be any­thing good. I was going to be a ner­vous wreck. I was going to say the wrong thing. I was going to upset some­one. But none of it hap­pened and it hasn’t hap­pened in five and half years because they keep invit­ing me back so I can’t have done it that bad­ly.  You know when I turn up at Pain Man­age­ment class­es I don’t just turn up as a tutor. I actu­al­ly turn up, I learn some­thing every day.  Every sin­gle day is a school day. 

You know health­care pro­fes­sion­als and patient vol­un­teers are the same humans but they are very dif­fer­ent.  I hope I won’t offend any health­care pro­fes­sion­als – they can be very intim­i­dat­ing, and they deliv­er a mes­sage that, as a patient, you feel you have to take it.  So the doc­tor says to you you need to take Gabapentin. You take the Gabe­pentin because it is going to get rid of the pain.  A pain vol­un­teer says to you ‘Yeah take the Gapa­pentin but when you’re going to Exeter, or wher­ev­er you’re going, stop three times on the dri­ve down’.  A doc­tor won’t say that to you because they don’t under­stand that expe­ri­ence.  And that’s the dif­fer­ence. That’s where it comes from – it’s the mes­sen­ger – it’s who deliv­ers it to you   as far I was concerned. 

When I first saw Rob in the room I thought he was anoth­er doc­tor and I couldn’t wait for him to talk. You know this pain patient wait­ing to be deliv­ered, to be forcefed this, you know dripfed this thing, like Pavlov’s dogs. You know. You’re going to get it and you’re going to get bet­ter and everything’s going to be per­fect.  Because in the back of your head you still want that mag­ic cure. But that mag­ic cure is going to come from anoth­er human being, not a dose of drug. 

So, one of the joys of being a pain man­age­ment tutor is I feel like part of this team, you know, this amaz­ing team. I don’t feel like a doc­tor but I feel like a con­sul­tant kind of way, you know [laugh­ter], I’m a lay con­sul­tant kind of thing. Peo­ple come and say to me ‘So Prim­rose – how do you do this’ and I’m like ‘Oh yeah’. You know you don’t tell patients what to do but you share with them your own sto­ry.  And I’ll say to them ‘Oh I went up to Lon­don the oth­er day. The whole jour­ney up took me three and a half hours’ and they’ll be like ‘Why?’ ‘Oh I stopped four times’.  And those are the things that make a dif­fer­ence to some­body else who is going through a jour­ney that you might not know their par­tic­u­lar jour­ney but you know what a pain jour­ney is and you know that they don’t want to hear the per­fect ver­sion of events.  They don’t want to hear that doing your hair takes three hours longer than some­body else because you can’t sit up long enough for the hair­dress­er to do it.  You might have to real­ly plan – it might be the only thing you do for the day.  It’s the lit­tle things that you do and you’ve all been through PMP so you’ve got that tool­box as well.  So, here’s anoth­er tool­box that you might have and don’t even know it.  You could be the break­ing moment in some­body who is liv­ing with pain’s life. You could just be that per­son and it could be the sim­plest of state­ments.  The most mun­dane thing that you think doesn’t mean a thing – who would have thought the words ‘I still live with pain’ would mean any­thing to any­one.  I didn’t think it would mean any­thing to me but it does now because it was the moment that I decid­ed ‘I’m going to live with this for the rest of my life, but I’m going to have a nice life’. After that I just do things dif­fer­ent­ly and that’s what pain man­age­ment has done for me.  The best part though is being on the team.  You feel so val­ued.  You feel so val­ued it’s a case of ‘some­body wants you there’.  For me being that mes­sen­ger is a lot more impor­tant than the message. 

[Applause].  

Ambler: Can I intro­duce my col­league Deb­bie Joy from Southamp­ton.  And Deb­bie if you’d like to intro­duce your co-presenter. 

Deb­bie Joy: Prim­rose I loved your talk.  Thank you. 

So, I’ve come from a ser­vice – I’m a clin­i­cal lead and I’m also a clin­i­cal psy­chol­o­gist and I’m kind of the head of three pain ser­vices.  We’ve got Southamp­ton City, Portsmouth City and South East Hamp­shire and Gosport so there’s quite a few ser­vices there.  And Nick’s asked me to talk about my jour­ney into hav­ing vol­un­teers in the ser­vice.  And I would say it’s been quite a long one and I took a lit­tle bit of con­vinc­ing.  So, I think that’s why Nick thought it might be inter­est­ing to hear about why that was and what the issues were for me and what I had to think about and per­haps, to some extent, over­come, in order to get what we’ve got going now started. 

Putting it blunt­ly I had quite a lot of wor­ries about it.  I’m going to take you on a bit of a tour on what was inside my head a few years ago. There were quite a few things when I unpacked it. I list­ed them all out like a good psy­chol­o­gist – all of my thoughts – and I was able to put them into about five dif­fer­ent cat­e­gories. The things that con­cerned me about hav­ing vol­un­teers in the service. 

The first one, and this was quite a big one, was about con­trol.  Specif­i­cal­ly, how do you con­trol vol­un­teers?  I had thoughts like ‘What might they say, they could say the wrong thing, would they take over, I mean I’m run­ning a pain man­age­ment pro­gramme – I’ve got a lot to get through – I haven’t got much time for oth­er stuff’. I was a bit wor­ried about them doing or say­ing the wrong thing –being inap­pro­pri­ate even – could that go wrong and what would I do. 

We did have a lit­tle go at get­ting vol­un­teers involved in our pro­grammes at one point and to be hon­est I don’t think we did it very well, look­ing back, and we were kind of hop­ing to get some of these won­der­ful effects where peo­ple share their expe­ri­ences that Prim­rose spoke about and kind of it had a big impact on peo­ple. But unfor­tu­nate­ly, it wasn’t exact­ly on mes­sage on one occa­sion and it just didn’t go down well and I think that was enough for us to stop at that point. 

I also won­dered how you man­age these vol­un­teers. Again, where is the control. 

Anoth­er, again big area, was around resources.  I mean I was always taught that there’s no such thing as a free lunch and I kind of think well a vol­un­teer it sounds free but actu­al­ly what are the resource costs of hav­ing vol­un­teers in your ser­vice and a big one is time and I was like ‘Gosh will it make more work?’ I real­ly can’t take much more work.’ so that was quite a bar­ri­er for me. 

Anoth­er one was mon­ey.  I know we say vol­un­teer and it does sound like that’s free but is that eth­i­cal?  I wasn’t sure that was ok.  Can we just not pay peo­ple to do some­thing that helps us?  I mean we get paid to do our jobs as health­care pro­fes­sion­als so I felt quite uncom­fort­able about hav­ing peo­ple com­ing along and help­ing who we weren’t pay­ing. I didn’t want to be tak­ing advance of people. 

My fourth kind of area of con­cern was around per­mis­sion.  I didn’t know if it was a bit naughty to get peo­ple in for free and to ask them to help.  I didn’t know what the Trust thought about it because in the NHS, as I’m sure you are aware, we have Gov­er­nance, there are issues around safe­ty.  There’s the safe­ty of patients, there’s the safe­ty of you as a work­er, as a vol­un­teer. There’s lots to think about there and we have our struc­tures and ways of doing it and when someone’s a paid employ­ee well that’ all kind of sort­ed out isn’t it.  So, I wasn’t quite sure how it fit­ted with our organ­i­sa­tion. And also, you know, we have these things called ser­vice spec­i­fi­ca­tions.  The Com­mis­sion­ers are buy­ing some­thing from our Trust. They are buy­ing a par­tic­u­lar ser­vice and vol­un­teers aren’t men­tioned in there. So, it kind of, it didn’t look com­plete­ly obvi­ous how to do that easily. 

Last­ly, if I’m com­plete­ly hon­est, I think I felt quite inse­cure about it.  It’s like ‘Will they do us out of a job’.  I mean this is self-man­age­ment isn’t it. This is kind of what you do in your lives and it’s like well you know what that’s like don’t you.  You’ve learned how to do it and it’s like well ‘Will you need us?’.  As you prob­a­bly learnt if you had any psy­chol­o­gy on the pro­grammes you did when we get anx­ious the thing to do is avoid it isn’t it. So that’s what I did. 

How­ev­er, I went on a lead­er­ship course and in that course I had to read some­thing called the Five Year For­ward View – it’s an NHS doc­u­ment – it was the 2014 ver­sion – there’s a new one out now. And that was try­ing to answer the ques­tion of how we make the NHS sus­tain­able. So how are we going to deal with all this increas­ing need that’s out there, par­tic­u­lar­ly with long-term con­di­tions. And this doc­u­ment real­ly focused on ideas around that and it talked about empow­er­ing patients, includ­ing the vol­un­tary sec­tor more, by work­ing in part­ner­ship with peo­ple and the patient voice and I knew oth­er pain ser­vices were doing things with vol­un­teers and it was start­ing to sound a lit­tle bit trendy.  And some of them are doing it on quite a big scale but I didn’t know how they’d solved all of those prob­lems that I had fore­seen.  And think­ing about our ser­vice, where we do lots of pain man­age­ment pro­grammes but we have to say good­bye to patients at the end, it just seemed like a no brain­er. I real­ly couldn’t avoid this any longer. 

I will say it did involve work and it did involve resources so I was right about that but, luck­i­ly you know, I had some great peo­ple who were pre­pared to work extra hours and were able to, who were able to real­ly get things going in our ser­vice and get us our love­ly vol­un­teers – I’ve got three of them with me today. And my expe­ri­ence so far of this has been that the vol­un­teers bring so much ener­gy and pas­sion and com­mit­ment. They care about it, you know, they want to help, they’re real­ly sup­port­ive. It’s a real­ly nice thing to be around actu­al­ly.  I def­i­nite­ly say we are stronger with experts by expe­ri­ence at our side.  I’ve man­aged to wheel some vol­un­teers along with me.  Nick can I just ask how do you think it’s going? 

Ambler: Well we were just dis­cussing this dri­ving up – the three of us – and Kevin and Julie there.  We are learn­ing and chang­ing things and I think each day that you do some­thing you learn more.  We did it because, well in my case I was rung up by my psy­chol­o­gist, Rhona McKirk, and she said would I vol­un­teer and I felt that before I start­ed this, as many vol­un­teers who have been on there, I was in a very dark place.  The pain con­trolled me, I didn’t go out by myself.  After the course I now go out by myself, the pain doesn’t con­trol me any­more. I live with the pain. I feel so much bet­ter so the course it did me so much good that I want­ed to do some­thing back. I had absolute­ly no idea what a vol­un­teer did when I was asked.   We will still learn and we have a super­vi­so­ry meet­ing every two months and we learn from that things are explained to us and to help us. 

Kevin: For me I am pret­ty sim­i­lar to Prim­rose. I retired at 42 due to ill health and felt lost and when the offer was made to vol­un­teer I felt I had a chance to have a place back in soci­ety, have a rea­son to get out of bed and it’s real­ly made a dif­fer­ence in my life – mas­sive­ly.  And it’s helped me man­age my pain — bet­ter than even the pain man­age­ment pro­gramme itself did. Because I learned from oth­er peo­ple when we go to their pain man­age­ment pro­grammes, their sto­ries give us ideas and we can use those and we use exam­ples all the time and just build and build and build — and I talk too much apparently. 

[Laugh­ter] 

Ambler: Julie’s job is to kick him when he starts talk­ing too much. She always does.  But there is part of the plea­sure that we get out of it and Julie will cor­rob­o­rate this. 

We went to one in Southamp­ton and there was a very young girl there that didn’t say a word. She was sit­ting there curled up in a lit­tle ball on a seat. Didn’t say a thing and then the psy­chol­o­gist in charge put them into groups to talk to each oth­er about what they had done good and what had been bad and this sort of thing – just to get them to talk and — again, she nev­er said a word.  When they came round to their group to explain – noth­ing – absolute­ly zilch. And we had to go to a fol­low-on group, we had to leave ear­ly because there was a fol­low-on group we had to go to and, by that stage, after the break, she had moved up the back and she was try­ing to move around but still not a word out of her.  And as we were going we just said to her ‘I hope you get on well and good luck with it’ and she said ‘Thank you ever so much – that was love­ly’ and nei­ther of us thought we’d see her when we went back at the penul­ti­mate meet­ing but when we were back there there she was. Maybe we had a lit­tle bit to do with why she stayed.  Because the first time she had spo­ken was to us and so she must have got some­thing from our sto­ries of what we’d got on and that. So yeah we get a great thing out of it and we see, more than the clin­i­cians, the change because we go on week one when they are all there and every­one is sort of sit­ting like this and fold­ed up. And when we go back on week nine or week eight, depend­ing on which it is, you see the change in them and it’s a huge change from peo­ple — the only way you know they are in pain then is look­ing in their eyes.  And you can still see the pain but the pain there it’s not vis­i­ble. I always say it’s tak­en the pain from here to here. It’s behind me now. I’ve worked with my pain, worked at it, and that’s what we can add and if we have done some­thing to help then that’s good. 

Julie: And I think we do present our­selves as we should do. We don’t step out of line. We know we are not clin­i­cians.  And we will always say to the peo­ple we can­not have a one to one with you.  You know if you want to talk to some­one you need to talk to your doc­tor or clin­i­cian or who­ev­er because it’s not our place to do that.  But all we can do is sup­port and that’s what we do and that’s what we get so much out.  It’s incred­i­bly pow­er­ful.  I think Prim­rose used that word too ‘pow­er­ful’.  

Ambler: Can I intro­duce Pen­ny and Deb­bie from Dorset.  But I can’t remem­ber your titles so I’m sorry. 

Deb­bie: That’s fine. My name’s Deb­bie and I’m a pain coach. I also do a steer­ing group.  Pen­ny does .. 

Pen­ny: I just do the pain coach­ing and we’ve also worked with the REC – the Recov­ery and Edu­ca­tion Cen­tre along­side the Dorset Pain Man­age­ment team, worked togeth­er to set up a course for the intro­duc­tion of pain man­age­ment so you are bring­ing the men­tal and the phys­i­cal togeth­er so that’s an ongo­ing thing.  In fact we’ve just updat­ed the course haven’t we so that’s done four times a year?  Three times a year? 

Deb­bie: For the Steer­ing Group what we do is we get togeth­er and the staff and the vol­un­teers that are on the Steer­ing Group we dis­cuss what’s work­ing and what’s not work­ing, what would be ben­e­fi­cial, what wouldn’t be. 

I have had MS for 24 years so I know what it’s like to be iso­lat­ed and not to have any­body to talk to and the liv­ing with pain and so on and so forth.  When we did the pain coach­ing we had to do train­ing and you have to learn the bound­aries, con­fi­den­tial­i­ty, you know, how not to upset some­body basi­cal­ly.  How to behave around peo­ple.  And it basi­cal­ly gave you how you could help some­body in a good, pos­i­tive way and not over­step, which is real­ly impor­tant, because you can’t sit and say to some­body ‘you should do this’ or ‘you can do that’ or any­thing like that. You have to lis­ten to them and that’s the whole point. It’s about lis­ten­ing and hear­ing their con­cerns, their wor­ries, their fears.  Some­times you have to gen­tly — you know they’ve done the course and they’ve for­got­ten things so you can think well, you know, actu­al­ly pac­ing which is my biggest thing is, you know, if you pace your­self if you do things so you are gen­tly encour­ag­ing them to remem­ber what they’ve been taught because we all for­get, we all do and it’s help­ful for them to have some­body to actu­al­ly come along and go well, you know, ‘what about’ or ‘maybe you could try that’ or ‘if you are feel­ing real­ly bad’ you know ‘maybe going back to the pain ser­vice’, ‘mak­ing a phone call’, you know so you are always encour­ag­ing them to sort of help them­selves, but in a gen­tle way. 

Pen­ny: And when some­body first comes to the ser­vice well they will have been approached, they will have done a course pos­si­bly or they will be see­ing a clin­i­cian on a one to one and maybe they’ve sug­gest­ed they’d like a pain coach or what­ev­er it is we’re being called nowa­days.  That very first meet­ing, the meet­ing is set up between us the clin­i­cian and the per­son who’s pos­si­bly want­i­ng some more sup­port and, with­in that meet­ing, we obvi­ous­ly dis­cuss con­fi­den­tial­i­ty and what­ev­er they say to us we do not pass on to any­one else unless we feel that per­son is going to be a dan­ger to them­selves or to some­one else. That is the only time we would pos­si­bly go above their heads. But oth­er­wise any­thing, they have got to feel safe in talk­ing to us. 

Deb­bie: You are help­ing them feel that they actu­al­ly are a mem­ber of soci­ety.  You are help­ing them remem­ber that they are a per­son and that, you know, that pain is there and it’s not going to go away. We can’t help you that way but we can lis­ten and we can under­stand how dif­fi­cult it is to go to the shop, go vis­it a friend, go to the pic­tures. Just things that every­body takes for grant­ed. Nor­mal­ly peo­ple take all that for grant­ed.  For some­body who has been stuck in their house liv­ing with pain for years that is like Mis­sion Impos­si­ble. It real­ly is like Mis­sion Impos­si­ble.  So, you know, if you want to talk to me on the phone, talk to me on the phone, if you want to email me bril­liant.  But would you like to meet in a cof­fee shop, we can go for a cup of cof­fee, we can talk over cof­fee, and you’re get­ting them to come back out of them­selves in a nice way.  And you know if they say like, you know, for exam­ple my lady for exam­ple, she’ll be like ‘I used to love doing this Deb­bie’. Well let’s look at that.  Let’s see if we can do some­thing like that. OK we’re in a 65 year-old Stretch and Flex group but we enjoy it because it helps and it’s about being in a group of peo­ple who don’t all look at you and think, you know. And we stand in the back and we do our best, you know, and she enjoys it and she enjoys going and I get some­thing out of it because actu­al­ly I need to do the Stretch and Flex as well. 

Pen­ny: And I think that’s some­thing that’s quite help­ful for us because although we are all very good at telling oth­er peo­ple how they can help them­selves or what­ev­er but we do for­get about our­selves some­times so if you are help­ing some­body else you are remind­ing your­self as well aren’t you that actu­al­ly ‘I should do that’ or yeah let’s do that with you so we both ben­e­fit. I think it works both ways def­i­nite­ly.  And I think it’s very impor­tant for every­body, for all of us here to remem­ber, that yes we live with the pain but it doesn’t define who we are. It’s just this thing that sits on our shoul­der and we have to adapt and learn to man­age it but we are still us, we are not pain. 

Deb­bie: We decid­ed that, in our area, there wasn’t a lot of things for peo­ple to come and do social­ly so we, Pen­ny, I, and there’s a gen­tle­man set up a sup­port group, and it’s a cof­fee morn­ing real­ly to be hon­est. And we just, every third Fri­day we all get togeth­er and we go have a cup of cof­fee.  And any­body that lives with pain can come along, sit down and actu­al­ly feel nor­mal.  You know, if they are a bit ‘oh oh oh’ get­ting in the seat yeah ‘You alright?’ ‘Aye fine’ and, you know, they’re just nor­mal and it’s nice for them to be able to just go out and say ‘Well I’m hav­ing a bad time and this this and this’ and we can go well we’re not going to sit there and coun­sel them. 

Pen­ny: They don’t have to explain them­selves Deb­bie.  I think it’s this whole accep­tance, what­ev­er you’re deal­ing with on that day you can just be here and relax. 

Deb­bie: Basi­cal­ly if you want to be a pain coach it’s real­ly, real­ly reward­ing it real­ly is and it does work. 

Pen­ny: And if you just help one per­son it’s so worth­while.  I had a lady and she was in such dis­tress and anx­ious­ness when I first met her and all she want­ed was some­one to lis­ten to her and feel val­i­dat­ed that her pain is real. It real­ly is there. And it was a slow process but to see her very, very grad­u­al­ly make steps for­ward.  She grad­u­al­ly became to accept – ‘oh gosh I am going to have to live with this for­ev­er’.  And then with accep­tance you can then start work­ing on the man­age­ment side.  And it’s so reward­ing if you see some­one who was down here to sud­den­ly be in a bet­ter place. It’s worth it just for that one person. 

[Applause].  

Ambler: Thank you both.  Can I intro­duce two col­leagues from Glas­gow – John Brem­n­er first and Lind­say sec­ond to com­plete the set of exam­ples of set-ups with dif­fer­ent vol­un­teers from around the coun­try.  So, I think over to you to take things for­ward from here, John, so thanks. 

John Brem­n­er: Good morn­ing ladies and gen­tle­men and thanks Nick for the invitation. 

What I’d like to talk to you about today is an ini­tia­tive that was devel­oped in Greater Glas­gow & Clyde Health Board to improve the infor­ma­tion that gets to patients and to try and get to the patients ear­li­er and I’ll also talk about my own expe­ri­ences and fail­ings in vol­un­teer­ing in that pro­gramme.  But first a bit of an introduction. 

I suf­fer from osteoarthri­tis and have done for about 15 years and been in chron­ic pain for ten years so I was enrolled in the Pain Man­age­ment Pro­gramme in Glas­gow in Novem­ber 2015.  A date that sticks well in my mind. I was in a bad place as many of you were at that time and that set me on the road to recov­ery.  But not only did it set me on the road to recov­ery it became the stim­u­lus to me vol­un­teer­ing with the Pain Ser­vice.  I had so many ben­e­fits from that pro­gramme that I just want­ed to give some­thing back and I’ll tell you the sto­ry of how we did that. So that became my stim­u­lus to vol­un­teer the road back to recovery. 

The feed­back the team had been get­ting per­sis­tent­ly was ‘if only I had had some of this infor­ma­tion ear­li­er in my pain jour­ney.  Why didn’t I get this ear­li­er? I might not have been here, in this state, if I had had infor­ma­tion ear­li­er’.  But lim­it­ed resources, huge num­bers, large num­bers of peo­ple wait­ing for places on cours­es, that was the dilem­ma the team faced.  The solu­tion was to actu­al­ly devel­op a short infor­ma­tion ses­sion and Mar­tin Dun­bar is the leader of the team that devel­oped this pro­gramme. They are basi­cal­ly groups of up to ten and they are led by a patient vol­un­teer. There is no clin­i­cian in the room.  We are sup­port­ed by Mas­ters stu­dents, psy­chol­o­gy stu­dents, from Strath­clyde Uni­ver­si­ty who are on place­ment with the ser­vice but none of the team are in the room with us when we do the ses­sions. And they last for about two hours. And the idea of the group ses­sion is that peo­ple can learn from each other’s experience. 

Patients self-refer to the course. They hear about it from their GP, var­i­ous places, but they self-refer so there is no wait­ing list. We cov­er six cen­tres across Glas­gow and Clyde and we have, to do that, five train­ers who deliv­er those cours­es — so we deliv­er about six ses­sions a month right across the region.  We get excel­lent train­ing and sup­port and we are care­ful­ly checked before we are allowed to fly solo.  But once we fly solo we have ongo­ing super­vi­sion ses­sions – about every two months – we all get togeth­er, the stu­dents and the pain train­ers.  We exchange our expe­ri­ences, we learn from each oth­er, we think about how we might deal with dif­fi­cult sit­u­a­tions bet­ter.  So, it’s an ongo­ing process of learn­ing so we’re not left alone and that, I think, is cru­cial­ly impor­tant because not only does it main­tain stan­dards it helps you build your confidence. 

I was actu­al­ly quite scared of doing this.  Now in my work I had giv­en talks at sci­en­tif­ic con­fer­ences, I’d spo­ken to busi­ness groups – some thou­sands of peo­ple at a time — and sud­den­ly here I was absolute­ly ter­ri­fied of the notion of being asked to give pre­sen­ta­tions.  And I think part­ly that was because what we were deal­ing with was a group of vul­ner­a­ble peo­ple whose well­be­ing, part­ly, was in our hands for that cou­ple of hours and that was quite daunt­ing. I was real­ly out­side my com­fort zone so that’s where the impor­tance of the sup­port team comes in. To make sure that you’re com­plete­ly con­fi­dent, com­plete­ly com­fort­able about going and doing this, what I think, is a very impor­tant job. And that ongo­ing sup­port that we have is cru­cial­ly important. 

Now just some expe­ri­ences – it’s what I call the ‘moment of change’.  It’s that moment where the group comes in and starts to assem­ble and you can see they are all ner­vous and the eyes are down and the arms are fold­ed and they are wary and you can just read the thoughts. You know ‘Am I in the right place?’, ‘Is this going to be of any use to me at all?’ and very ear­ly on what you see is that begin­ning of the arms unfold­ing, just a glint in the eye of nod­ding, peo­ple start­ing to say ‘yeah I get that’ and that’s a tremen­dous trans­for­ma­tion. Not every­body in the room does it but by far the major­i­ty of peo­ple that’s the reac­tion and it’s absolute­ly fantastic. 

One of the bits that always gives me a real thrill, and it hap­pens most times, is that some­body says ‘This is absolute­ly fan­tas­tic, great just to hear this stuff from some­body who suf­fers like me and knows and under­stands how I feel’.  And I think that’s a cru­cial part of vol­un­teer­ing involve­ment in any of these pro­grammes.  It’s an exhil­a­rat­ing expe­ri­ence. That’s not an exag­ger­a­tion. It ticks every sin­gle box for me. I get some­thing from the ses­sions every time. I get renewed. 

I’d just like to touch, before I fin­ish, on some­thing else that we are now try­ing to do which is widen­ing the net.  We want to make sure that we are get­ting to as many dif­fer­ent kinds of groups as pos­si­ble.  We use GPs and phar­ma­cies in Scot­land.  We have the abil­i­ty to drop infor­ma­tion leaflets to every GP in the area.  But we’ve also con­tact­ed phar­ma­cists and they’re a great source of refer­rals too. But we are also speak­ing to char­i­ties and organ­i­sa­tions that are begin­ning to advo­cate patient involve­ment in care. We also talk to patient groups because often a symp­tom of a lot of prob­lems and dis­eases is chron­ic pain and last­ly — I think one of the most sur­pris­ing ones for me — was the Depart­ment of Work and Pen­sions. We went along to a show­case that they had about help­ing peo­ple who are out of work.  We went along, Lind­say and I went along, to put up our stall and we sat there.  What we found was that there were a lot of peo­ple out of work.  One of the rea­sons was that they were suf­fer­ing from chron­ic pain and they couldn’t get back to work. And they were des­per­ate to get back to work.  And it was great, from our point of view, to speak to peo­ple like that and then a few weeks lat­er to find or see them on the cours­es that we were delivering. 

Thank you for your time. 

[Applause]  

Lind­say: OK so hel­lo and thank you for hav­ing me here. My name’s Lind­say. I have chron­ic wide­spread pain and fatigue.  I’ve had that for about nine years now due to osteoarthri­tis in my spine.  I grad­u­at­ed from the Glas­gow Pain Man­age­ment Pro­gramme about sev­en years ago. But before I joined the PMP I’d already tried many inves­ti­ga­tions, med­ica­tions, treat­ments with vary­ing or no lev­el of suc­cess.  And, at my worst, I was hav­ing to use a self-pro­pelled wheel­chair and, at my best, I still had wide­spread pain, reduced mobil­i­ty and I was extreme­ly heav­i­ly reliant on crutches. 

Well don’t wor­ry, I’m not here to tell my pain sto­ry.  I know that every­one in the room has their own. I just felt I had no hope for the future.  I’d just turned 30 at this point and all I had was expec­ta­tions of a restrict­ed life with pain.  I just didn’t know how to con­trol it or man­age it.  So, what the Glas­gow PMP did for me — well aside from chang­ing my life with a struc­tured self-man­age­ment approach — they intro­duced me to a sup­port base.  Such as a wider pain com­mu­ni­ty, loca­tions and places that I could access for sup­port and advice and organ­i­sa­tions that I could check out that I didn’t even know exist­ed.  Like Pain Con­cern, The Glas­gow Dis­abil­i­ty Alliance … They also showed me how to look towards the future with­out fear. They showed me that I wasn’t alone and they also showed me that any­thing is pos­si­ble — don’t under­es­ti­mate what you can achieve.  Because I once con­sid­ered climb­ing the stairs of a light­house the best I could hope for.  Where­as now I con­sid­er my pos­si­bil­i­ties lim­it­less.  And, if I’m hon­est, for me my sense of pur­pose returned when I dis­cov­ered pain train­ing and, I didn’t know that then, but by doing that I would even­tu­al­ly — that would take me all the way to the Scot­tish Parliament. 

So, after grad­u­at­ing the PMP I was giv­en the oppor­tu­ni­ty to vol­un­teer as a pain train­er, and I won’t lie, I ques­tioned my own capa­bil­i­ty. That was more to do with self-doubt and anx­i­ety but I real­ly want­ed to give back.  The PMP had changed my life and, espe­cial­ly after hav­ing to leave work because of my pain, I just felt so aim­less and direc­tion­less real­ly.  But dur­ing the ini­tial train­ing to become a pain train­er I actu­al­ly had to with­draw. I was still kind of nav­i­gat­ing my own pain and my life. There were a lot of per­son­al issues, there was a lot going on in my life and I just felt com­plete­ly over­whelmed.  But it real­ly upset me. I was so angry and dis­ap­point­ed at myself and I hon­est­ly thought I’d blown my one chance to be involved in some­thing real­ly important. 

But, one year lat­er, I got a very friend­ly, sup­port­ive and wel­com­ing query just invit­ing me back to retry.  And, I won’t lie I was still feel­ing very frag­ile but it did help.  My con­fi­dence kind of grew a bit just by being remote­ly con­sid­ered capa­ble enough to try again.  And I realised as well I had to man­age my expec­ta­tions of myself a lit­tle bet­ter.  I wasn’t just a heav­i­ly med­icat­ed ama­teur, I was some­body of val­ue with ground floor expe­ri­ence that could actu­al­ly be put to good use. And I was ter­ri­fied that my anx­i­ety would lim­it my abil­i­ty but hon­est­ly my anx­i­ety has improved as a result. Most­ly through the par­tic­i­pa­tion and deliv­er­ing the ses­sions and I’m find­ing that I’m able to speak a com­plete­ly dif­fer­ent way.  Just fac­ing that fear head on is actu­al­ly just helped me so much. 

Even though I felt quite vul­ner­a­ble and a lit­tle out of my depth at the begin­ning I found that I was talk­ing about a sub­ject I actu­al­ly know quite a lot about.  And it does help to remem­ber that there is a shared expe­ri­ence of pain with every­body that I meet at the ses­sion and that real­ly does help too.  And as for the PMP team itself I’ve been ful­ly sup­port­ed each step of the way. There was nev­er any pres­sure to present till I was ready so I just observed for as long as I need­ed to.  I was intro­duced to the oth­er PMP grad­u­ates who then went on to become pain train­ers and, I have to say, I am hon­oured to be part of a team so ded­i­cat­ed to pro­mot­ing pain education. 

And again we had this shared expe­ri­ence of pain and that does lead to a very sup­port­ive dynam­ic. We reg­u­lar­ly get in touch through emails and, if by chance, where one of us is unable to cov­er a ses­sion it’s not a prob­lem – there’s always some­body else on the team that’s ‘oh no no, that’s fine I can cov­er it’. 

Now I would not have believed it at the start of my pain jour­ney and I prob­a­bly wouldn’t have believed it after I became a pain train­er but so many doors start­ed open­ing for me. 

In Sep­tem­ber of last year I was invit­ed to speak at The Rheuma­tol­ogy Cross Par­ty Group at the Scot­tish Par­lia­ment and this was in front of MSPs, Press and oth­er pro­fes­sion­als and peo­ple, per­haps, not so informed about pain and, I must admit, there was a ‘wow’ moment. My per­son­al pain jour­ney had made its way here and I was extreme­ly hon­oured to be giv­en that oppor­tu­ni­ty to help bring pain to the atten­tion of those in politics. 

Now I know that we have some vol­un­teers who are here with us today but to those who are con­sid­er­ing vol­un­teer­ing I whole­heart­ed­ly encour­age you to get involved. It is so reward­ing and so ful­fill­ing and there are so many ways, dif­fer­ent ways, to do it – it’s not just about pub­lic speak­ing. And you will dis­cov­er as well, like I did, that you are vital part of an extreme­ly sup­port­ive larg­er com­mu­ni­ty and, even if you stum­ble with it at first like I did, try to remem­ber that’s not fail­ing. That’s just part of learning. 

So, my advice would be just take it a step at a time.  Very best of luck to you all and please remem­ber to be kind to yourself. 

Thank you so much for listening. 

[Applause]  

Ambler: Thank you as well Lind­say.  This has kicked off many thoughts for me.  The place I would like to start is to throw this out to you that sure­ly must have kicked off some emo­tion­al reac­tions and I just won­dered if there is any­thing off the top of your head real­ly that you would like to say in reac­tion to what you’ve heard this morning. 

Par­tic­i­pant 1: I’d like to say thank you very much for all that you’ve said to us today.  You’ve inspired me to think that I am doing a good job with what I am try­ing to do. I’m a new vol­un­teer and some­body men­tioned about being paid, that you felt guilty that we weren’t being paid, but you are more than pay­ing us back for allow­ing us to be a vol­un­teer and pay­ing us back with knowl­edge.  And you can’t put a price on that so thank you. 

Kevin: The phrase that we use ‘the self­ish altru­ism’ is so true. We do get so much from every oppor­tu­ni­ty we get to engage with oth­er peo­ple and that can be whether it’s us meet­ing as vol­un­teers or whether it’s us meet­ing with patients as a volunteer. 

Prim­rose made the very point about this gen­tle­man hav­ing encour­aged her by using that term ‘I live with pain’.  And we do, it’s not dom­i­nat­ing us. We are dom­i­nat­ing it and we can move forward. 

Ambler: Can I throw it back fol­low­ing on from that.  Prim­rose talked about those five words which sound­ed so tame but they had such an impact on her. I just won­dered if there are any oth­ers in the room, I know many of you are vol­un­teers, but every­body who has done a pro­gramme. Has a vol­un­teer got in your head at that stage in a sim­i­lar kind of way? 

Par­tic­i­pant 2: The lady that was on my course, Jack­ie, goes all over the world on hol­i­day with com­plete strangers and I’d want­ed to go to a local café that was open, a com­mu­ni­ty café, and I was too ner­vous to walk in on my own because I won’t go out the house etc etc. And she had just been to Peru. So she’d been all the way to Gatwick, got on a plane, flown to Peru with a group of total strangers and had a love­ly hol­i­day and she does this three or four times a year and I thought, ‘What is wrong with me if I can’t even go out the house and walk into a café?’.  So, she com­plete­ly inspired me so, yeah, she was my inspi­ra­tion and that’s why I volunteered. 

Julie: I just want­ed to say I find being a vol­un­teer quite empow­er­ing because it’s such a lev­eller.  Because the peo­ple we deal with are exact­ly the same as us. The peo­ple we are help­ing are the same as us.  I work for the Home Office and I only work three days a week. They are absolute­ly hap­py for me to have time off to do this, to come along to the Con­fer­ence today, to do the Pain Man­age­ment pro­gramme, to sup­port the groups. It’s very impor­tant to them as well that I’m get­ting a lot from it and that it’s help­ing me. And that we’re help­ing oth­er peo­ple.  The main thing is that we are all in the same posi­tion, every one of us here that’s a vol­un­teer.  We’ve been there, we know it.  The last lady was say­ing that we just, you know, you just take so much from the peo­ple that you are work­ing with or help­ing, it’s just so impor­tant to us that we can just be giv­ing but we are still receiv­ing in such a high way as well. 

Ambler: I am struck by the line of con­ver­sa­tion here about altru­ism and reach­ing out to oth­ers and that’s obvi­ous­ly a theme of all the pre­sen­ta­tions this morn­ing.  One of the things that we haven’t pre­sent­ed, which was very tempt­ing I have to admit, is some­thing we have been up to in Bris­tol.  Which is the way in which peo­ple reach out to each oth­er where it’s mutu­al altru­ism rather than the self­ish thoughts. And it’s some­thing we’ve been doing in Bris­tol since about 2011/12 which you could broad­ly say is called, Let’s Stick Togeth­er. And that’s to encour­age cours­es to stay strong with each oth­er to keep in touch with each oth­er.  In the room today we have, of those I’ve been involved in, the very first one, and the most recent one, are strong­ly rep­re­sent­ed in the room. And I just won­dered if any of the par­tic­i­pants in those two, so you know who you are at the back and you cer­tain­ly know who you are in the mid­dle there.  Any reflec­tions on that, either the recen­cy of it, hear­ing this, or how endur­ing it’s been for those of you that have been get­ting togeth­er for years? 

Par­tic­i­pant 3: I’ve been on three pain man­age­ment cours­es and this is the only one that’s real­ly like said try and stay in your group after­wards because they can give you so much more sup­port than the actu­al course can give at the end.  Because you are like a lit­tle com­mu­ni­ty in your own lit­tle right.  So, you can, they are there for us, for me, if I am strug­gling for some­thing and they just, like, sup­port you. So and that’s what I think the oth­er two cours­es like missed out on, almost, is that ‘Keep in Touch’ afterwards. 

Ambler: How many times have your group met togeth­er since? 

Par­tic­i­pant 4: Only once but … 

Par­tic­i­pant 5: … we are always talk­ing on What­sApp.  You know you are there, if you’ve got some­thing going on, you can just reach out to each other. 

Ambler: And it may even have been a breath of fresh air but it’s been fine since you’ve got rid of the ther­a­pist hasn’t it? 

[Gen­er­al agree­ment and laughter] 

Par­tic­i­pant 6: One of the things which I think failed part­ly in my group — the par­tic­i­pants were drawn from loca­tions which were too far away and it was phys­i­cal­ly very dif­fi­cult to meet.  I do think it might be of val­ue to try and look at post­codes where peo­ple actu­al­ly are before they attend these groups.  In my course I had a flare up. It was one of those days where I felt like ‘I can’t real­ly make it’ and then I forced myself to get dressed, forced myself to get there. I put my cheery face on and the auto­mat­ic door opened and there were three peo­ple in the wait­ing room and they looked at me and they said ‘Do you need a hug? You are real­ly rough?’  My hus­band didn’t notice, my daugh­ter didn’t notice, nobody else noticed actu­al­ly how much effort it took me and I thought ‘Yes, I’ve well hid­den where I am. Nobody needs to know that the pain con­trols me’ but the fel­low suf­fer­ers actu­al­ly knew that I was just being a very good actor. 

Par­tic­i­pant: In our groups it’s the same. You are the experts in your pain. We under­stand what you are going through but we can’t know your pain.  Only you can do that and one of the things that we tend to say in our bit at the begin­ning is most peo­ple, when they go to a ses­sion, wor­ry about the whole group, you’ve gone, sud­den­ly there’s 12 peo­ple there and you’re going to talk about your pain in front of 12 peo­ple which, I got very emo­tion­al when it was mine, and even now telling the sto­ry we can get emo­tion­al because it takes you back to when you were in a black place. But I always say no more need to be alone sur­round­ed by peo­ple that don’t under­stand you. These 12 peo­ple all under­stand you in this room. They might have all dif­fer­ent types of chron­ic pain but they’ve got chron­ic pain. 

Ambler: When one hears the accounts that peo­ple have giv­en about the expe­ri­ence of vol­un­teer­ing because that extends the sense of being involved in pain man­age­ment that the point is that in the health pro­fes­sion­als heads it’s often a short sto­ry.  We hear about what’s gone before and then we’re real­ly focused on two or three months of con­tact and then we move on. But actu­al­ly the sto­ry, when you hear it back from some­body that ben­e­fit­ed from doing this, is a much longer sto­ry. And with­in that there is still so much that health pro­fes­sion­als have got to learn. We should be help­ing both lay the foun­da­tions for this longer sto­ry and also, although we can’t get direct­ly involved, we should be some­how offer­ing some sup­port beyond the end of our face-to-face con­tact which holds this stuff togeth­er.  We are try­ing, in Bris­tol, to learn about this. 

Do you have any thoughts about what the main mes­sages are for us because this will trans­fer to health pro­fes­sion­als?  I’m feed­ing back to them tomor­row about what we’ve cov­ered in this meet­ing.  And what would you like the pro­fes­sion­als to pay par­tic­u­lar atten­tion to now? I mean we know what we’re doing with Pain Man­age­ment Pro­grammes, we think, but what else should we be adding in? 

Par­tic­i­pant 7: Well our group just com­plete­ly fiz­zled out after this eight weeks and I think the fol­low up ses­sion only three of us turned up out of about 15 that start­ed the course, the tutor was late, the room wasn’t ready, we end­ed up with about 40 min­utes togeth­er and most of that was tak­en up with fill­ing in that huge ques­tion­naire and it all just felt like a bit point­less real­ly.  And I per­son­al­ly, would have thought like a prop­er fol­low up. I know you can’t put on a whole oth­er course but once I start­ed doing the vol­un­teer­ing so much of what I had learned on my course was rein­forced.  So much I had for­got­ten that I hadn’t even realised I’d for­got­ten until I start­ed vol­un­teer­ing myself.  So some­how, I don’t know how, some sort of fol­low up maybe a few months down the line — but not just an hour’s ses­sion.  Almost like a short refresh­er, yeah, if you could con­dense it in to two or three ses­sions maybe. 

Brem­n­er: It may be worth­while shar­ing what we do in Glas­gow. Every year we have a con­fer­ence — so a one day where we have some ses­sions avail­able, laugh­ing, yoga, all sorts of things.  But it’s real­ly just an excuse to get every­body from dif­fer­ent cours­es, or give them the oppor­tu­ni­ty, to come back togeth­er and share expe­ri­ences and see how they have got on. So that’s one mech­a­nism.  But what I’m hear­ing is that we real­ly need to do some work on groups after this. 

Ambler: That’s why you’re here John. 

Brem­n­er: That’s why, yeah, exact­ly ‑to learn — so I’d like to talk to you after­wards. My per­son­al expe­ri­ence is that our group just dis­solved at the end and I’m so jeal­ous of the oth­er groups that meet reg­u­lar­ly, but I don’t.  

Lind­say: John and I actu­al­ly we’ve spo­ken to oth­er peo­ple involved with the Glas­gow PMP, whether it’s the res­i­den­tial — we’ve a res­i­den­tial one up there for peo­ple that are more spread out — and there does seem to be a kind of desire for that — as soon as the course is com­ing to the end there’s this kind of pan­icked feel­ing.  But again, as John is say­ing, the con­fer­ence is real­ly good for that but we also find that the ses­sions, we kind of encour­age peo­ple to come back to the ses­sions as well because, again, it’s that shared expe­ri­ence so the ses­sions aren’t just for peo­ple that are wait­ing to go on the course or wait­ing to get treat­ment but again as a refresh­er for the for­mer grad­u­ates of the PMP and also fam­i­lies and bud­dies, to get that under­stand­ing to cre­ate a kind of wider sup­port base out­with the PMP as well. 

Par­tic­i­pant 7: I think the groups where they’ve got some­body who’s good at organ­is­ing things are the ones that tend to stay togeth­er, like the ladies were say­ing, they organ­ised a room and they con­tact­ed peo­ple.  But if you’ve got nobody with­in that group who’s good at that sort of thing, help­ing them along to start it off I think would be real­ly good. 

Kevin: So that comes with the facil­i­ta­tion and we ask if we are ok to be on the What­sApp group for a short peri­od of time and we will ver­bal­ly encour­age ‘Well done, it’s been real­ly good hear­ing all of your sup­port­ing com­ments, have you thought about meet­ing up yet, where are you like­ly to go, can we help, we’ll be there’.  We did one in Southamp­ton that fin­ished last week and they are look­ing at a cou­ple of weeks’ time on a Sat­ur­day morn­ing because a lot of them work. 

Dun­bar: Well speak­ing as a health pro­fes­sion­al I know one of the bar­ri­ers to vol­un­teer­ing for peo­ple is often the dis­tance and the phys­i­cal lim­i­ta­tions that are involved.  I am also involved with Pain Con­cern who are here record­ing these ses­sions.  We live in a dig­i­tal world don’t we? You don’t have to all go 30 miles to meet peo­ple in order to sup­port them so Pain Con­cern have a tele­phone helpline and they also have inter­net forums as well to offer help to peo­ple and they are very keen to train vol­un­teers. So if there’s any­body here going ‘I quite fan­cy doing some of that but the phys­i­cal bar­ri­ers are too restric­tive for me’, get in touch with Pain Con­cern and inves­ti­gate some ideas there because they’d be delight­ed to hear from you.  And they have very good sup­port and training. 

[Laugh­ter] 

[End of Con­fer­ence] 

Evans: Indeed we do and thanks to Con­sul­tant Clin­i­cal Psy­chol­o­gist, Dr Mar­tin Dun­bar, who is Clin­i­cal Lead for the Glas­gow & Clyde Pain Man­age­ment Pro­gramme for the reminder. 

So, you can make con­tact with Pain Con­cern at their web­site which is Painconcern.org.uk from where you will also be able to lis­ten to all edi­tions of Air­ing Pain, get details of how to sub­scribe to Pain Mat­ters mag­a­zine and tap in to the resources, videos, leaflets and much more on how to man­age your chron­ic pain. 

As always, I have to remind you of 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 well-being.  He or she is the only per­son who knows you and your cir­cum­stances and, there­fore, the appro­pri­ate action to take on your behalf. 

So, to end this extend­ed edi­tion of Air­ing Pain at the ‘Experts by Expe­ri­ence — Work­ing togeth­er in Pain Man­age­ment Pro­grammes’ Work­shop, Con­sul­tant Clin­i­cal Psy­chol­o­gist Dr Nick Ambler, who facil­i­tat­ed the event. 

Ambler: The pur­pose of this meet­ing was to lay down some points for oth­ers to lis­ten to and I think we’ve heard some inspi­ra­tional exam­ples of the way in which — the diverse ways in which ‑vol­un­teers have been work­ing with health pro­fes­sion­als in pain ser­vices.  We’ve heard about how this has a huge impact on the peo­ple tak­ing part in pro­grammes and they are the same peo­ple.  It’s some­thing we all have in com­mon.  Don’t for­get we are patients too and the health pro­fes­sion­als should be involved in this as ser­vice users as well as being respon­si­ble for evolv­ing and tak­ing things for­ward in pain management. 

One of the phras­es that stuck in my head from all of the pre­sen­ta­tions was some­thing that Lind­say said which is that ‘doors start­ed open­ing’. I for­get if that was the exact phrase but that real­ly neat way of express­ing the evo­lu­tion that’s hap­pened for her as an indi­vid­ual but the way in which life start­ed kick­ing off again. And I think there have been many exam­ples of that, from my per­son­al knowl­edge of talk­ing to you and oth­ers who have been involved in this, and I do think that it pro­vides a plat­form for peo­ple to kick on. 

I was ask­ing for mes­sages a minute ago to take to the pro­fes­sion­als and cer­tain­ly I’ll be on the case of that tomor­row at this meet­ing.  The one, real­ly, that I think most comes out loud and clear is this, it’s ‘Lis­ten’, because if we stop lis­ten­ing to this then we’re not doing our jobs prop­er­ly and, what you’ve said col­lec­tive­ly and your pres­ence here, is a very strong mes­sage about the pow­er of vol­un­teer­ing and the influ­ence it has on pain ser­vices. And for those of us that have been direct­ly involved in it there’s no turn­ing back. You can’t go back on this once you’ve got started. 

In ten years, rough­ly, since we began doing this we’ve trained at least 50 patient tutors who, in a vari­ety of ways, have been help­ing us along. And just to com­plete the point about how doors open 25 are still active with us.  Rob, over there, is the longest stand­ing, and still stand­ing, patient [laugh­ter] who is with us from the very begin­ning.  And 25 have moved in oth­er direc­tions and I was look­ing at the list the oth­er day of the dif­fer­ent things they’ve done. Some stop because of not being well, that’s per­fect­ly ok to put a bit of time in and pull out, that seems nor­mal to me, but it’s fas­ci­nat­ing how many oth­ers have kicked on into oth­er areas, got jobs, got involved in oth­er things, done dif­fer­ent forms of vol­un­teer­ing.  And, in that sense as well, I hope what you’ve said, what you’ve con­tributed today will inspire oth­ers to do so. 

So, thank you very much for tak­ing part, thank you very much to those who’ve gone to so much trou­ble to get here, to present their exam­ples — we real­ly appre­ci­ate it.  And Good Luck for those of you going for­ward in this. 

Thank you again 

[Applause] 

Con­trib­u­tors 

  • Dr Nick Ambler, Con­sul­tant Clin­i­cal Psy­chol­o­gist for the North Bris­tol NHS Trust’s Pain Man­age­ment Programme 
  • Prim­rose Granville, per­son liv­ing with pain and patient vol­un­teer with the North Bris­tol NHS Trust’s Pain Man­age­ment Programme 
  • Dr Deb­o­rah Joy, Clin­i­cal Psy­chol­o­gist and Clin­i­cal Lead of Pain Ser­vices for the NHS Solent Trust 
  • Pen­ny and Deb­bie, pain coach­es for the Dorset NHS Trust 
  • John Brem­n­er, per­son liv­ing with pain, pain train­er and founder of Glas­gow Com­mu­ni­ty Pain Edu­ca­tion Sessions 
  • Lind­say, per­son liv­ing with pain and pain train­er for Glas­gow Com­mu­ni­ty Pain Edu­ca­tion Sessions 
  • Dr Mar­tin Dun­bar, Clin­i­cal Lead and Con­sul­tant Psy­chol­o­gist for NHS Greater Glas­gow and Clyde 

More infor­ma­tion 

Con­tact: 

  • Pain Con­cern, Unit 1–3, 62–66 New­craighall Road, Fort Kin­naird, Edin­burgh, EH15 3HS 

Tele­phone: 0300 102 0162 

Email: info@painconcern.org.uk  

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