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Transcript – Programme 51: At the Community Pain Management Programme

Prac­ti­cal insights and life-chang­ing expe­ri­ences on a com­mu­ni­ty pain man­age­ment course

To lis­ten to this pro­gramme, please click here.

[For a Welsh lan­guage ver­sion of this tran­script please click here.]

In the pre­vi­ous edi­tion of Air­ing Pain we explored the pros and cons of tak­ing pain man­age­ment into the com­mu­ni­ty. This time Paul Evans trav­els to Powys – the most sparse­ly pop­u­lat­ed coun­ty in Wales – to see how com­mu­ni­ty pain man­age­ment works in prac­tice at the pro­gramme run by Ystradg­yn­lais Com­mu­ni­ty Hospital.

Course leader Geth­in Kemp explains that the com­mu­ni­ty approach makes pain man­age­ment tech­niques avail­able to peo­ple who are unable to under­take a res­i­den­tial pro­gramme. For peo­ple whose lives may have been com­plete­ly tak­en over by pain the course offers strate­gies for cop­ing with the emo­tion­al fall­out, increas­ing their activ­i­ty lev­els through pac­ing and get­ting a good night’s sleep.

Par­tic­i­pants on the pro­gramme, Toni and Nia, explain what they hope to get from it. We hear from them again at the end of the eight-week course when they reflect on the progress they have made – from learn­ing to com­mu­ni­cate more effec­tive­ly to redis­cov­er­ing a love of painting.

Issues cov­ered in this pro­gramme include: Com­mu­ni­ty health­care, remote/rural com­mu­ni­ties, pac­ing, emo­tions, mood, sleep, paint­ing, art, activ­i­ty-rest cycle, relax­ation, fatigue, brain fog, mem­o­ry, depres­sion, insom­nia, rela­tion­ships, com­mu­ni­cat­ing pain and painkillers.

Paul Evans: You’re lis­ten­ing to Air­ing Pain, brought to you by Pain Con­cern, a UK-based char­i­ty work­ing to help, sup­port and inform peo­ple liv­ing with pain, and for health­care pro­fes­sion­als. I’m Paul Evans, and this edition’s been fund­ed by an Awards for All grant from the Big Lot­tery Fund in Wales.

In the last edi­tion of Air­ing Pain, we heard a debate at the Welsh Pain Society’s Annu­al Sci­en­tif­ic Meet­ing. It explored the pros and cons of bring­ing pain ser­vices right into the com­mu­ni­ty where patients live. Of course Wales, just like Eng­land, Ire­land and Scot­land, has vast rur­al areas where for patients to just trav­el to a major cen­tre is at best pun­ish­ing, and at worst impos­si­ble. So fol­low­ing up from that debate, I went along to a pain man­age­ment pro­gramme at the Ystradg­yn­lais Com­mu­ni­ty Hos­pi­tal. Ystradg­yn­lais is a for­mer min­ing vil­lage in the vast rur­al coun­ty of Powys. This is one of 18 com­mu­ni­ty pain man­age­ment pro­grammes for peo­ple with chron­ic pain and/or fatigue run each year by the pain and fatigue man­age­ment cen­tre at Bron­llys Hos­pi­tal in mid Wales. Pain Con­cern fea­tured their three-week res­i­den­tial pro­gramme in Air­ing Pain (pro­gramme 5). You can down­load that from Pain Concern’s web­site, which is So, hav­ing let the par­tic­i­pants set­tle down in week one, I joined them at the start of their sec­ond of eight weeks, but before meet­ing with them, I asked phys­io­ther­a­pist Geth­in Kemp, one of the pro­gramme lead­ers, how impor­tant it is to have these pain and fatigue man­age­ment cours­es with­in the community.

Dr Geth­in Kemp: As you are aware, we run the res­i­den­tial pain and fatigue man­age­ment pro­gramme at Bron­llys, which is for peo­ple to come and stay with us. But there’s an awful lot of peo­ple who’ve got lives to get on with, who can’t give up that time or can’t, for what­ev­er rea­son, be away from home for those kind of quite intense cours­es. This enables peo­ple to, I can’t say it’s on their doorstep, at least access it close by, where they can actu­al­ly inter­act and get some lev­el of man­age­ment strate­gies under their belt so they can car­ry on hav­ing a good qual­i­ty of life. But when they can’t take the time or are unable to take the time to come on a res­i­den­tial pro­gramme, it’s also real­ly impor­tant for the health pro­fes­sion­als to be able to refer into that as well because peo­ple are at a loss of what to do because there are psy­cho-social com­po­nents, there are stress com­po­nents, there’s all these oth­er com­po­nents that affect peo­ple in chron­ic pain and in chron­ic fatigue. And our spe­cial­ism is to help peo­ple with those par­tic­u­lar issues: where their mood’s affect­ing them, where their social inter­ac­tions are affect­ing them, all those kind of things. And oth­er ther­a­pies won’t have the time or prob­a­bly the skill set to be able to man­age those in the way that we do.

Evans: Anoth­er impor­tant thing for peo­ple to remem­ber, for those who don’t know the geog­ra­phy of Wales as well as you and I do, Powys is the largest geo­graph­i­cal coun­ty in Wales.

Kemp: [laughs] It cer­tain­ly is, yes.

Evans: With the small­est pop­u­la­tion. I can’t remem­ber what the sta­tis­tics are, or the num­ber of sheep to peo­ple [Kemp laughs], but it’s very, very high. So peo­ple have to trav­el vast dis­tances with very lit­tle pub­lic trans­port to receive help.

Kemp: Yes, yes. And of course finances are quite an issue for peo­ple because often the peo­ple with chron­ic pain and chron­ic fatigue have had to give up work or cer­tain­ly their earn­ing poten­tial for them has been curtailed.

Evans: That’s Geth­in Kemp, one of the lead­ers on the com­mu­ni­ty pain and fatigue man­age­ment pro­gramme in Ystradg­yn­lais in mid Wales. One of the par­tic­i­pants was Toni Williams.

Toni Williams: I have reflex dys­tro­phy sym­pa­thet­ic syn­drome, which I am told is basi­cal­ly like a form of MS (mul­ti­ple scle­ro­sis). I have pelvic spondyli­tis. I have tenosyn­ovi­tis of the right foot, and I have the low­er fourth or fifth discs which aren’t whole, caus­ing sci­at­i­ca and quite a lot of back pain as well.

Evans: That’s quite a list. How long have you had these conditions?

Williams: Since 1996, this started.

Evans: Now that’s 17 years. So 17 years on from that, you’re com­ing to a pain man­age­ment programme.

Williams: Yeah. I was actu­al­ly offered this up in Bron­llys but you had to stay for five days and then come home over the week­end. With chil­dren being small, even though I couldn’t do much with them, I was still there. They need­ed mam­my, mam­my was there. So when this pro­gramme became avail­able that I could go home, I took the chance and I thought, ‘Well, why not? I’ve lived with it long enough. I need some­one to teach me how to live with this even longer because it’s not going away.’

Evans: That’s inter­est­ing. You’ve come to learn how to live with it, not to be cured.

Williams: If there was a cure, if there was a tablet or a pro­ce­dure or an oper­a­tion where I could go and be cured of every­thing and go back to work, and live what’s classed as a nor­mal life, then I would because it’s oth­er people’s per­cep­tions; when you look at me, I don’t look as if I’ve got any­thing wrong with me.

Evans: Peo­ple who don’t have a chron­ic pain con­di­tion will not real­ly under­stand how pain impacts on their whole life and that of peo­ple around them rather than just hav­ing a bad back.

Kemp: I sup­pose you can liken it to being insis­tent­ly nagged indef­i­nite­ly, in a way that’s gnaw­ing. And again with the fatigue, nev­er feel­ing like you’ve got or can gen­er­ate the ener­gy to be able to do what­ev­er it is that you want to do. And that kind of gnaw­ing and nag­ging away is also asso­ci­at­ed with the loss of what you would like to be able to do and it’s just asso­ci­at­ed with the fear of what that pain means, because in the nor­mal run of things, pain and fatigue, as it hap­pens, are both emer­gency sig­nals to say that something’s wrong.

So we’re kind of designed, if you like, to have a fear­ful response to pain and to react to pain in a very emer­gency, blue-light-flash­ing kind of way. And when that hap­pens, of course, every­thing gets put on hold, life gets put on hold as we try to get rid of pain, as we try to get rid of fatigue. And so peo­ple are kind of just trapped in this ongo­ing cycle. It’s tak­en over their life. It’s tak­en over their mind. There’s noth­ing much more to their exis­tence because it’s become their life. I don’t mean that in a judg­men­tal way – I just mean that from the point of view that it’s kind of tak­en over.

Williams: It’s affect­ed my life in a big way. Every­day tasks; get­ting out of bed in the morn­ing, to nor­mal every­day things like get­ting up in the morn­ing with a headache and car­ry­ing on with a dai­ly rou­tine in the house – to me that’s a huge chore, just even think­ing about it.

It affects your mind as well. It plays tricks with your mind. Try­ing to remem­ber a sim­ple thing like radi­a­tor – just try­ing to remem­ber. You’re look­ing at that thing and you just don’t know what it’s called. You can­not reg­is­ter in your mind that that is a radi­a­tor and you need to get that out. That’s so frustrating.

Evans: It’s also very embar­rass­ing, isn’t it?

Williams: Yes, it is.

Evans: Par­tic­u­lar­ly with names

Williams: Yes it is. You see a neigh­bour; a neighbour’s friend has called. You know who they are, you know their name, and you know where they live. You just don’t know how to say it. You just can­not. Your brain doesn’t tell you what it is you need to say.

Evans: What do peo­ple around you – your friends and fam­i­ly – think of your condition?

Williams: I don’t like the pity. They try to help, they try to under­stand but nobody can under­stand what that pain is like, what that feel­ing is like, how alone some­times you can feel. They don’t under­stand. They can’t under­stand because they’re not liv­ing with the pain, they’re not liv­ing in your body, so that’s a hard question.

Evans: In six weeks’ time, what would you like to have happened?

Williams: I would like to have a bet­ter per­cep­tion of what I myself am able to do. Today has been about pac­ing your­self. Some­thing where­as I’ve thought, ‘I’ll do it all in one day and then tomor­row I’ll rest’ – now I realise I’ve been doing the wrong thing. So every time we come here, we are learn­ing some­thing new, which real­ly, if you sat and thought about it, is just com­mon sense. When you’ve got that con­stant pain, the con­cen­tra­tion isn’t there. All you want to do is fin­ish the job that you’ve start­ed to the best of your abil­i­ty and rest. But today we’ve been told that lit­tle and often gives you two or three days of per­haps sit­ting down and talk­ing to the chil­dren, talk­ing to your neigh­bour, going for a lit­tle walk in the gar­den. That’s what I’m hop­ing for at the end of the six weeks; a bet­ter qual­i­ty of life for myself.

Evans: I’ll speak to you again in six weeks.

Williams: Thank you very much.

Kemp: It’s impor­tant that peo­ple feel able to start mov­ing again, and mov­ing in a way that they feel able to move. Quite often peo­ple will start doing exer­cise and actu­al­ly come out flar­ing up their symp­toms and actu­al­ly hav­ing quite a hor­ri­ble time with it. So my pri­ma­ry role is help­ing peo­ple to move in a way that’s enjoy­able, relaxed and actu­al­ly, believe it or not, plea­sur­able, so that exer­cise becomes fun for them again and actu­al­ly becomes sort of use­ful. My role is to get some move­ment going. We’d also be look­ing at, from an occu­pa­tion­al point of view, allow­ing peo­ple to be able to start a process of doing what they want to do. Things like pac­ing activ­i­ty, mak­ing sure that peo­ple can take breaks or swap between activ­i­ties in the right kind of way so that they’re not over­do­ing it. That also includes how much sense input peo­ple are get­ting, etcetera, because often with more the fatigue-end of things, it’s often not the phys­i­cal aspect, it’s the men­tal stress­es and the sounds and the nois­es and the oth­er aspects so we get peo­ple to be able to pace, man­age their activ­i­ties, so they’re not going through this big boom and bust. Boom and bust is where, you know, make hay while the sun shines, fol­lowed by three or four days of crash­ing, as it were. When peo­ple are boom­ing and bust­ing, they’ve got a very chaot­ic life so they can’t plan any­thing. So pac­ing is a very impor­tant part. It’s one of the strongest prac­ti­cal strategies.

Evans: And one of the most difficult.

Kemp: Pac­ing is actu­al­ly one of the most dif­fi­cult. Part­ly because ‘I’ve start­ed so I’ll fin­ish’, that kind of dri­ver that we have is actu­al­ly very dif­fi­cult… It’s a very dif­fer­ent way of run­ning life. It’s about leav­ing jobs par­tial­ly open, it’s about hav­ing jobs based on posi­tion and par­tic­u­lar phys­i­cal activ­i­ty rather than com­plet­ing a set work­load, which is how we like to be because it’s tidi­er, if you know what I mean.

Evans: It’s task ori­en­tat­ed, isn’t it?

Kemp: Yes, yes, that’s right, yes.

Evans: The buzz­word.

Kemp: Then we look at ele­ments of relax­ation. If peo­ple are in a fight or flight mode all the time, their stress sys­tem is run­ning at a high peak, and longer term, which is a the­o­ry of chron­ic fatigue – it’s not the only the­o­ry, by any strength of imag­i­na­tion – but a the­o­ry is that stress response gets kind of worn down over a peri­od of time, so people’s cor­ti­sol lev­el doesn’t tie in with activ­i­ty any­more. So effec­tive­ly, you feel awake when you don’t need to, and when it’s time to prep for an activ­i­ty, you actu­al­ly haven’t got any ener­gy because your body’s tim­ing sys­tems aren’t geared into that. And it’s all a bit depressed as well, that kind of lev­el of how your body gets its arousal or doesn’t. It doesn’t tie in with how it should because it’s gone a bit wonky, basically.

Evans: So that’s fatigue. What have we missed out?

Kemp: Ele­ments of get­ting real­ly good qual­i­ty of sleep. Sleep’s very impor­tant, as any­body who’s not hav­ing it knows. Know­ing and under­stand­ing sleep, under­stand­ing cycles, under­stand­ing how to relax, all those kind of issues allow you a bet­ter chance of get­ting good qual­i­ty of sleep, which is one of the things that real­ly… I think if peo­ple were to mea­sure qual­i­ty of life [laughs], it’s almost their qual­i­ty of sleep, in some respects. Very impor­tant aspect, of course, under­ly­ing this whole prin­ci­ple; it’s imbued with a strong sort of psy­cho­log­i­cal per­spec­tive. The way the biol­o­gy of the brain works, the way the biol­o­gy of pain works, basi­cal­ly if you like, our pain sig­nals trun­dle up the spine and they go straight into the areas that are often asso­ci­at­ed with mood, with threat, and also with emo­tion. And if we aren’t on top of that, to use old ter­mi­nol­o­gy, the gate­ways are open for pain to be com­ing in. That’s quite old ter­mi­nol­o­gy but basi­cal­ly if peo­ple are in a low mood, the unpleas­ant­ness of the pain gets them more. If they’re in a threat mode and they’re focus­ing on the pain, the inten­si­ty will increase over a peri­od of time. So a lot of what we’re look­ing at is how to – this accep­tance busi­ness again – how to be alright to have the con­di­tion but also many ways of how to work on mood so that you’ve got some resilience. The ter­mi­nol­o­gy is emo­tion­al resilience, so that when unpleas­ant stuff comes along, you’ve got some abil­i­ty to bounce back from difficulties.

Nia: I’m Nia.

Evans: And you’re on the chron­ic pain man­age­ment pro­gramme in Ystradg­yn­lais in Powys.

Nia: Yes.

Evans: Could I ask you what con­di­tion you have?

Nia: I have chron­ic back pain.

Evans: And how long have you had that?

Nia: Over four years now.

Evans: How has that affect­ed you?

Nia: It changed my life com­plete­ly. I used to be very out­go­ing, doing what any nor­mal young­ster was doing, going out club­bing, par­ty­ing, and doing lots of exer­cise. As soon as it hap­pened, it all went down­hill to the point where I had a six-year-old niece help­ing me dress because I couldn’t put my shoes and socks on any­more, to not being in work, not being able to dri­ve, con­stant­ly on med­ica­tion, which has left me with a con­stant brain fog. [laughs] I can’t remem­ber words half the time. [laughs]

Evans: How old are you?

Nia: Thir­ty-one.

Evans: That has stopped you in your prime then, really.

Nia: Yes it has. It’s affect­ed my rela­tion­ships with my fam­i­ly, with my part­ner. I was lucky I only met him two weeks before my back went. I was very lucky he stuck with me but his life has also had to change to my needs, my wants, not so much as doing what he wants to do. A lot of it is work­ing around what I can do, what’s phys­i­cal­ly pos­si­ble. With future mar­riage, chil­dren, it’s all down to what my body can take in the future.

Evans: You’re very lucky to have some­body who obvi­ous­ly loves you enough to put up with that.

Nia: [laughs] Yes. I have asked him a few times why he’s still here and I have giv­en him the option to walk away, but I’m lucky enough he hasn’t walked away and yes, he does want to mar­ry me. [laughs]

Kemp: What hap­pens with a con­di­tion is it kind of puts you into a role or you take on a role or a man­tle of hav­ing a con­di­tion and when peo­ple want to change, what they find is it’s actu­al­ly quite dif­fi­cult to change because those around them have changed to reflect where they were. So the com­mu­ni­ca­tion skills [include] assertive­ness train­ing and all those kind of skills that we talk about, and just the abil­i­ty to under­stand and self-reflect a bit more. We teach com­mu­ni­ca­tion skills so peo­ple can start to rene­go­ti­ate their bound­aries because cer­tain­ly if peo­ple have been cared for by oth­er peo­ple, if you like, there’s almost an overde­pen­dence of the car­er – they feel like they’ve got to care. So how do you rene­go­ti­ate that? How do you rene­go­ti­ate and actu­al­ly get your inde­pen­dence back?

Nia: He has got to always wor­ry about what I am like, how I’m feel­ing. If we go some­where, he will be con­stant­ly ask­ing, ‘Are you okay? Can we do this?’ He will make sure I’m tak­ing my med­ica­tion on time, and if I need to take more med­ica­tion, he will push me and say, ‘You might need to take more med­ica­tion at this time.’ Because we don’t live togeth­er, it affects us when we see each oth­er, you know. I still let him lead his life but because I don’t go out as much and he still goes out, there’s always the depress­ing fact, will he meet some­body who is not ill and leave me for some­one who is still able to do every­thing that you can do with, you know, a 31-year-old. At 31 you should be able to go out and enjoy your­self and I don’t often do that now. [Only] on very rare occa­sions. [laughs]

Evans: That puts enor­mous pres­sure on a relationship.

Nia: Some­times, yes. You know, I always have the guilty feel­ing of, ‘Should we be togeth­er? Am I ruin­ing his life by him being with me? Can I pro­vide him with chil­dren in the future?’ Because he real­ly wants them, I real­ly want them. We don’t know if we can have them because I don’t know if my body would be able to take it. There’s a lot of pres­sure there, espe­cial­ly for me more than him, because he some­times doesn’t realise what I can and can’t do, you know. It’s hard work try­ing to let him know that I can’t always do what I want to do.

Evans: Now you’re at the start of this pain man­age­ment pro­gramme. What were your expec­ta­tions before you started?

Nia: I didn’t have many expec­ta­tions. I want to see what I’m capa­ble of doing fur­ther down the line. After just one ses­sion, I went out for the whole week­end and I’ve noticed my pain but haven’t let it rule me and even after one day, that’s helped, one ses­sion. I’m hop­ing fur­ther on that I’ll be able to man­age my pain men­tal­ly and not have to rely on tablets because I want to come off them. So I’m hop­ing by the end of this, I might be close to being tablet-free, espe­cial­ly with the new year.

Kemp: Peo­ple are in a mode where their pri­ma­ry expe­ri­ence is suf­fer­ing. They’re in a state of suf­fer­ing that’s ongo­ing. It affects their mood so they feel depressed. It has knock-on effects. Their life becomes quite chaot­ic. They have good days where they do lots, fol­lowed by crash­ing – what we call boom and bust – where they crash for a few days. Their mood drops so depression’s very com­mon with chron­ic pain and chron­ic fatigue. There’re some var­i­ous oth­er bits and pieces as well about what makes this boom and bust: people’s dri­vers, per­fec­tion­ism, want­i­ng to please oth­ers, all those oth­er bits and pieces. Those are the things that stop us being able to take time for our­selves and care for our­selves. So we’ve got the feel­ing alright about our­selves, which is the resilience, but actu­al­ly not hav­ing this demon on the shoul­der whip­ping us along and mak­ing us do things even when there’s nobody else ask­ing us to do them – that’s very impor­tant from a man­age­ment perspective.

Evans: Let’s go back to my man­age­ment buzz­word: task ori­en­ta­tion. How do you get that out of somebody’s sys­tem? I’m here to do an inter­view. My neck is now aching. Should I stop?

Kemp: Well, you could’ve had a chat with me and com­mu­ni­cat­ed with me [laughs] that that was like­ly to hap­pen and we could’ve actu­al­ly paced it and actu­al­ly said, ‘Well, every five min­utes or so we’ll have a shift, change posi­tion, get a dif­fer­ent sound, loca­tion [laughs] or some­thing like that, have a dif­fer­ent ambi­ence’ and we could’ve worked it in that way so that you could’ve shift­ed. In between shift­ing, we could’ve done some relaxed move­ment, tun­ing in to all the ways we talked about how to relax. But phys­i­cal­ly relax as well, because men­tal relaxation’s not nec­es­sar­i­ly the same as mus­cu­lar relax­ation, so actu­al­ly learn­ing how to mus­cle-relax, etcetera, that’s one of the things we do on the pro­gramme too. And just tak­ing time out to tune in to some­thing plea­sur­able, bird­song, take some deep breaths, etcetera, just enjoy the air, the pleas­ant weath­er that we’re get­ting at this time of the year.

Evans: Yes but that’s tak­ing away from me the fact that I’m enjoy­ing myself. I’m enjoy­ing talk­ing to you, I’m enjoy­ing the per­son­al con­tact. I don’t want to be think­ing, ‘Right, let’s take time out to med­i­tate now in this con­ver­sa­tion’ because it’s tak­ing away some­thing I’m enjoying.

Kemp: In which case, what you need to have done a lot of work on before­hand is prac­tis­ing that so that becomes an auto­mat­ed response, if you see what I mean, so that your pac­ing and your grad­ing just become a part of you and you’ll nat­u­ral­ly shift your posi­tion. You’ll actu­al­ly nat­u­ral­ly notice your way that you’re hold­ing ten­sion and you’ll start to make the inter­nal adjust­ments. But that will be after you’d done the pro­gramme and [you are] maybe actu­al­ly get­ting quite good at it at that point.

But at the same time, I want to make it very, very clear that pain man­age­ment pro­grammes can­not be a bolt-on to help peo­ple live a crazy lifestyle. We’re not going to be mak­ing it so that you can have parac­eta­mol for your headache but con­tin­ue to bang your head against the wall, if you see what I mean. There’s an ele­ment where habits will have to change.

Evans: That’s Geth­in Kemp, one of the lead­ers on the com­mu­ni­ty pain and fatigue man­age­ment pro­gramme held at Ystradg­yn­lais Com­mu­ni­ty Hos­pi­tal in mid Wales.

As usu­al, I’ll remind you that whilst we believe the infor­ma­tion and opin­ions on Air­ing Pain are accu­rate and sound based on the best judg­ments avail­able, you should always con­sult your health pro­fes­sion­al on any mat­ter relat­ing to your health and well­be­ing. He or she is the only per­son who knows you and your cir­cum­stances, and there­fore the appro­pri­ate action to take on your behalf. Don’t for­get that you can still down­load all the pre­vi­ous edi­tions of Air­ing Pain from, or you can obtain CD copies direct from Pain Con­cern. The con­tact details to make a com­ment about these pro­grammes via our blog, mes­sage board, email, Face­book, Twit­ter or pen and paper are also at the web­site, and once again, that’s And to learn more about the Bron­llys pain man­age­ment cen­tre, the com­mu­ni­ty and res­i­den­tial pro­grammes they run, go to their web­site, which is Once again,

Okay, six weeks on, Toni and Nia. Can I just remind you, Toni, what you said six weeks ago? You said, ‘What I’m hop­ing for is a bet­ter qual­i­ty of life.’

Williams: So far, it has opened my eyes to pain man­age­ment: how to cope with it dai­ly, dif­fer­ent meth­ods, dif­fer­ent med­ica­tion, how to take them. It has changed the way I think about pain relief, pain man­age­ment and yes, I think it will give me a dif­fer­ent qual­i­ty of life because I have realised that I’ve missed out on some­thing that I enjoy doing, which is painting.

Evans: Yep, when I walked into the group this morn­ing, you were show­ing around a watercolour.

Williams: Yes. When we came to the first meet­ing, we were asked, was there any­thing that we enjoyed doing that we want­ed to do again, whether it be paint­ing, writ­ing, read­ing, you know, just social­is­ing with friends, and I thought, ‘Yeah, I used to paint.’ And I did one for my mum, which she loved – she’s got it on her wall. And I brought in a pho­to of the paint­ing I had done to show the group, and one of the gen­tle­men that’s in the group, Steve, he’d always want­ed a paint­ing of the sleep­ing giant.

Evans: The sleep­ing giant being?

Nia: It’s a moun­tain. [laughs]

Williams: [laughs] And I fin­ished it for him this week and brought it in and he’s real­ly happy.

Evans: Well, he was more than hap­py because I saw that and I heard him. But you’ve start­ed paint­ing again because of this group?

Williams: Yes. This group hasn’t only brought to mind that maybe we are all capa­ble of just a lit­tle bit more if we tried. You’ve got to know your lim­its. You don’t do any­thing that’s going to hurt you because it’s point­less com­ing here if you’re going to do exer­cis­es or do any­thing that’s going to put you back three weeks. But by pac­ing myself, which I learned in the group, and an under­stand­ing of my ill­ness­es, I have done it. I have real­ly, real­ly enjoyed it, and I’ll be doing more.

Evans: Nia, if I could remind you of what you said all those weeks ago. First of all, you talked about it hav­ing affect­ed the rela­tion­ships with your fam­i­ly and your part­ner. Have they changed?

Nia: Not as much as I would’ve hoped. My part­ner still thinks it’s a bit fun­ny, me com­ing here. But when I actu­al­ly sat him down and told him this is what we do, he said, ‘Well, you should have told me ear­li­er, and I would’ve had more under­stand­ing of what you actu­al­ly do in the group.’ So by me actu­al­ly com­mu­ni­cat­ing – which I learnt on the pro­gramme, how to com­mu­ni­cate with my part­ner and my fam­i­ly – he under­stands. I’d like a bit more out of him, but that is just me com­mu­ni­cat­ing more, so I’ve learnt com­mu­ni­ca­tion is important.

Evans: So the com­mu­ni­ca­tion prob­lem wasn’t him not under­stand­ing, but you not talk­ing to him.

Nia: Yeah, that’s right, yeah, because I don’t always want to bur­den him with my prob­lems. I’ve learnt through the pro­gramme that it’s okay to share with him how I’m feel­ing and just to pass on knowl­edge of the pro­gramme to him so he has a bet­ter under­stand­ing of what I’m actu­al­ly going through and what ben­e­fits I am hav­ing, going in the group. Because he would say, ‘Oh you’re going to ther­a­py.’ And I’d say, ‘It’s not an AA meet­ing.’ But final­ly telling him, ‘This is what we do, this is what we learn, for me, learn­ing this, we will have a bet­ter qual­i­ty of life when we get mar­ried and have a future togeth­er.’ So he is slow­ly under­stand­ing it but it’s a process we both have to go through togeth­er, and it’s not going to be achieved in eight weeks. It’s a process that’s going to hap­pen through our life­time togeth­er of us talk­ing about what’s going on with my symp­toms and how we can best man­age it togeth­er, not just me man­ag­ing always on my own.

Evans: Can I just remind me of the words you said to me six weeks ago. You said, ‘I’m hop­ing that I’ll be able to man­age my pain men­tal­ly and not have to rely on tablets. By the end of this pain man­age­ment pro­gramme, I want to be close to being tablet-free.’

Nia: I’m not close to being tablet-free but this pro­gramme has taught me that I can become tablet-free. But eight weeks was a sil­ly time to lim­it myself to try and come off all my med­ica­tion in one swoop. It’s going to take a lot longer, but I’m mak­ing progress of book­ing appoint­ments with one of the advi­sors to be able to man­age. It’s not going to be done in eight weeks, I’ve realised that. It is a long process to actu­al­ly wean your­self off all your tablets, but I’m okay with that. I’ve learned to accept that noth­ing can be done over a short space of time.

Evans: Is that part of the pro­gram­ming, if you like, that you’ll learn to man­age your expectations?

Nia: Yes, yes, we have learnt to man­age our expec­ta­tions and being alright say­ing, ‘No, it’s not for me. I need to look after myself more.’ The pro­gramme has helped a lot with being able to men­tal­ly man­age your process.

Evans: Toni, would you rec­om­mend this pro­gramme to oth­er people?

Williams: Yes I would. When it first start­ed, the first day I came, I thought, ‘What am I doing here?’ But if I hadn’t have come here, I wouldn’t have met the bunch of peo­ple that are here because I’ve come with know­ing nobody but gone with a lot of friends.

Evans: Anoth­er thing I noticed is that there’s a lot of laugh­ter in here, even some smut­ty jokes.

Williams: Yeah [laughs], because we’ve got to know each oth­er very well. We’ve all got the same symp­toms, if not the same ill­ness­es. We’re all here for the same rea­son, and it’s good to laugh. So we have got to know each oth­er, and I’m going to miss every­body. It’s the last day today and I am going to miss not com­ing here on a Fri­day and meet­ing everybody.

Evans: Do you think that that will be a problem?

Williams: No, because I’m sure we’ll all see each oth­er, whether it be in pass­ing, in shop­ping, in town – we’ll all see each oth­er. The teach­ers, they’re all on the end of the phone, so you’re not on your own. You’re not on your own. It’s the last day for us to come here and meet here, but we won’t be on our own.

Evans: And you all get invit­ed back in three months’ time.

Williams: Yes we do, yes.

Nia: Par­ty. [laughs]

Williams: Can’t wait.

Nia: A day trip out.

Williams: Yeah. [laughs]


  • Geth­in Kemp, Phys­io­ther­a­pist and PMP leader
  • Toni Williams, participant
  • Nia, par­tic­i­pant.


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