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Transcript – Programme 28: Self-Management: Pacing and communication

Learn­ing to man­age pain with Arthri­tis Care’s self-man­age­ment programme

To lis­ten to this pro­gramme, please click here.

In the pre­vi­ous edi­tion of Air­ing Pain we fea­tured the work of the char­i­ty, Arthri­tis Care, and, fol­low­ing up from that pro­gramme, Paul Evans looks into their self-man­age­ment pro­gramme, the Chal­leng­ing Pain Work­shop, which is avail­able to peo­ple with any kind of chron­ic pain, not just arthri­tis. We lis­ten in to the course’s vol­un­teer tutors and par­tic­i­pants as they dis­cuss learn­ing to pace activ­i­ties and improv­ing com­mu­ni­ca­tion skills. We also hear from Rachel Gondwe about how vol­un­teers gain from shar­ing their expe­ri­ences of pain and about a tri­al run by Arthri­tis Care in part­ner­ship with a health author­i­ty to mea­sure the effec­tive­ness of self-man­age­ment programmes.

Issues cov­ered in this pro­gramme include: Pac­ing, com­mu­ni­cat­ing pain, arthri­tis, vol­un­teer­ing, work­shop, con­fi­dence, co-mor­bidi­ties, fatigue, breath­ing exer­cis­es, peer sup­port, phys­io­ther­a­py, pain toolk­it, weight loss, rela­tion­ships, fam­i­ly and patient voice.

Paul Evans: Hel­lo, I’m Paul Evans, and wel­come to Air­ing Pain, a pro­gramme brought to you by Pain Con­cern, the UK char­i­ty that pro­vides infor­ma­tion and sup­port for those of us who live with pain. This edition’s made pos­si­ble by Pain Concern’s sup­port­ers and friends, and more infor­ma­tion on fundrais­ing efforts is avail­able on our Just­Giv­ing page at painconcern.org.uk.

Her­bie Roley: If you can just change your thoughts – the way that you react to life, the way you say things – I can cope if I plan and pace myself. I can and will, there­fore, be accom­plish­ing some­thing and I’ll feel more pos­i­tive. I will try an activ­i­ty. And even if it’s just a small suc­cess, give it a big tick because noth­ing, noth­ing on God’s earth suc­ceeds like success.

Evans: Now in the pre­vi­ous edi­tion of Air­ing Pain, I fea­tured the work of the char­i­ty Arthri­tis Care, and fol­low­ing up from that pro­gramme, I decid­ed to look into their self-man­age­ment ‘Chal­leng­ing Pain’ work­shop. It’s for peo­ple with any per­sis­tent pain con­di­tion, not just for those with arthri­tis. Now self-man­age­ment is key to you, rather than the pain, con­trol­ling your life. Rachel Gondwe is the train­ing ser­vices coor­di­na­tor for Arthri­tis Care:

Rachel Gondwe: Chal­leng­ing Arthri­tis was the first self-man­age­ment pro­gramme that was adopt­ed in the Unit­ed King­dom, and it was deliv­ered by Arthri­tis Care. It was a pro­gramme that was devel­oped in Amer­i­ca, in Stan­ford Uni­ver­si­ty, and we brought the pro­gramme to Eng­land. It was very suc­cess­ful, and the gov­ern­ment rec­og­nized that, and they ini­ti­at­ed then, the expert-patient pro­gramme to be devel­oped with­in the NHS (Nation­al Health Ser­vice) and the Depart­ment of Health as a means of self-man­age­ment for peo­ple liv­ing with long-term con­di­tions. In the end, there were sev­er­al organ­i­sa­tions that start­ed to run the gener­ic pro­gramme, which Chal­leng­ing Arthri­tis ran as ‘Chal­leng­ing Your Con­di­tion’, oth­er­wise known as the ‘Expert-Patient Pro­gramme’, the chron­ic dis­ease self-man­age­ment programme.

And so all of those self-man­age­ment providers, in the end, got togeth­er to write a qual­i­ty assur­ance pro­gramme for the whole net­work of peo­ple deliv­er­ing the pro­gramme and that became known as ‘Step­ping Stones to Suc­cess’. And lat­er on, that grew and became a qual­i­ty assur­ance frame­work to help any orga­ni­za­tion that want­ed to start run­ning these pro­grammes. They would devel­op a frame­work that would enable these new orga­ni­za­tions to start run­ning the plan­ning, the design, the man­age­ment and the eval­u­a­tion side of it, and that was called ‘Step­ping Stones to Quality’.

Evans: We’re talk­ing about pro­grammes to help peo­ple with chron­ic pain con­di­tions man­age their con­di­tions better?

Gondwe: Obvi­ous­ly, Chal­leng­ing Arthri­tis is for peo­ple with arthri­tis, and the oth­er pro­gramme, Chal­leng­ing Your Con­di­tion, is for peo­ple with any long-term con­di­tion. But as a result of run­ning these cours­es for a num­ber of years, we felt that more and more peo­ple were ask­ing specif­i­cal­ly about pain, pain being a main prob­lem that peo­ple faced as a symp­tom. So as a result, we felt that we need­ed to actu­al­ly devel­op a new prod­uct, a new pro­gramme, specif­i­cal­ly to help peo­ple liv­ing with chron­ic pain. So again it’s a gener­ic pro­gramme for peo­ple with any kind of pain, not just peo­ple with arthri­tis, although when you look at our sta­tis­tics, most peo­ple do have arthri­tis as one of their co-mor­bidi­ties. They might have oth­er con­di­tions as well, but arthri­tis, espe­cial­ly osteoarthri­tis, is one of the main con­di­tions. So Chal­leng­ing Pain is a self-man­age­ment pro­gramme for peo­ple liv­ing with chron­ic pain, but it’s run over two weeks – two and a half hours a week for two weeks.

Evans: Rachel Gondwe. So a few weeks ago, I took part in one of the Chal­leng­ing Pain work­shops in Cardiff. There were 17 of us includ­ing myself, and whilst most had arthri­tis con­di­tions, we had all expe­ri­enced dif­fi­cul­ties and issues famil­iar to any­one with per­sis­tent pain. The work­shop lead­ers were Jill Davies and Her­bie Roley.

Davies: I’m Jill. I work for Arthri­tis Care as a vol­un­tary ser­vices super­vi­sor, and that’s my col­league Her­bie. [To work­shop par­tic­i­pant] Yeah, so what effect does pain have on your every­day life?

Work­shop Par­tic­i­pant: Tem­pera­ment.

Roley: Tem­pera­ment, alright.

Davies: There’s actu­al­ly spelling today, isn’t there Her­bie, my wee lad?

Work­shop Par­tic­i­pant: It’s the pain, not me. [room laughs]

Davies: Think­ing and con­cen­tra­tion, yea. We start to dwell on our own prob­lems. It’s quite easy to do a turn-in on your­self and feel sor­ry for our­selves. Emo­tions, yeah – changes your mood. You might be say­ing, why me? Why is this hap­pen­ing to me? What have I done to deserve this? Eat­ing – it can affect your eat­ing. You might not eat enough, or too much, as in my case – com­fort eat. Can’t get off to sleep, but if you do get to sleep, [it’s] dis­turbed sleep because you wake up and you’re in pain and you turn over and, if you’re like me, you’ve got to take a trot off to the bath­room as well and you’re well and tru­ly awake by then. And wak­ing too ear­ly. And rela­tion­ships – yeah, absolute­ly – with your fam­i­ly, your friends and your health pro­fes­sion­als. You’re not the same per­son, really.

Kirs­tine Mac­Dowall: When­ev­er we run cours­es the two main prob­lems report­ed by peo­ple, what­ev­er their con­di­tion – because we get peo­ple with all con­di­tions – not just arthri­tis, are pain and fatigue. We always say to peo­ple, what about your con­di­tion caus­es you most prob­lems in your day-to-day life? And that’s the num­ber one answer – it’s pain, very close­ly fol­lowed by fatigue.

Evans: Kirsten MacDowall’s anoth­er vol­un­teer tutor with Arthri­tis Care. Now what every­body with chron­ic pain real­ly wants is for the pain to be tak­en away. So is this what the Chal­leng­ing Pain workshop’s all about?

Mac­Dowall: I wish we could. I mean that’s what every­body wants – some mag­i­cal med­ica­tion or tip that will take the pain away. No, it’s more about learn­ing how to man­age your pain and how to min­i­mize it, so yes, ide­al­ly you’ll have a reduc­tion in your pain, but no, we don’t have the secret of mak­ing it go away com­plete­ly. But I think it depends on your lev­el of pain, you know – if your pain is one out of ten and some­body said, ‘I can take it down to 0.9’, you’d say, ‘can’t be both­ered’. But if your pain is nine, and some­body said, ‘I can help you get it down to 8.5’, you’d be interested.

Evans: So where do you start with people?

Mac­Dowall: I have to say, we start with where they are, you know. We get a com­plete mix on the cours­es. We get peo­ple from, you know, 17 or 18 right up to the 90s; all eth­nic­i­ties – just com­plete­ly dif­fer­ent peo­ple, so we have to start with where they are. And they have a mix of con­di­tions. It’s hard for me to think of a con­di­tion that I haven’t at one point had some­body with. So we start with where they are.

Evans: Have you been on a course as a par­tic­i­pant yourself?

Mac­Dowall: Yes.

Evans: Tell me about why you enrolled in the first place.

Mac­Dow­ell: I enrolled in the first place because I’m not anti-med­ica­tion and I think with acute con­di­tions, medication’s great, but I think with long-term con­di­tions, some­times you get to a point where the med­ica­tion is caus­ing as many prob­lems as it’s solv­ing. It’s deal­ing with prob­lems you have, but it’s cre­at­ing new prob­lems. So I want­ed to not be sole­ly reliant on med­ica­tion. I want­ed to explore oth­er avenues, espe­cial­ly as I was con­stant­ly being urged, you know, by the med­ical pro­fes­sion­als, to keep med­ica­tion, because of the side effects, to an absolute minimum.

Roley: Now nor­mal­ly, with­out even think­ing about it, we breathe in and out over 21000 times a day. So I’m going to try and tell you how to do it, [laughs] when you’ve been doing it very suc­cess­ful­ly all these years. When we’re in pain, our breath­ing tends to be inef­fi­cient. So we’re going to look at just how we can reap the ben­e­fits if we learn to improve the qual­i­ty of our breath­ing. Con­scious breath­ing, which is what I’m real­ly going to talk about, can help us to un-tense our mus­cles. That in itself can help us get off to sleep at night, and it can help us to release a lot of the ten­sion that comes with pain. So right, shoul­ders are dropped – I’ve got rid of the ten­sion. I’m going to breathe in now so I shan’t be talk­ing for a minute or two.

[deep breath­ing]

Gondwe: All of our region­al and nation­al offices offer the pro­gramme. They’re all run by peo­ple liv­ing with arthri­tis or chron­ic pain so they’re all peo­ple that have that real-life expe­ri­ence. And they’re often the pos­i­tive role mod­els – that’s what engages peo­ple a lot on the course, to see that there’s peo­ple out there liv­ing with the same con­di­tions, the same kind of symp­toms, but get­ting on with their lives and being able to move for­ward, and that is a real boost for the participants.

And often, just get­ting togeth­er with oth­er peo­ple in the room that are also suf­fer­ing from the same kind of con­di­tions and symp­toms – that also helps peo­ple remove some of that iso­la­tion that they feel, that they’re the only one, on their own and that nobody else under­stands what I’m going through. And then sud­den­ly you’re in a room of peo­ple that do under­stand. And peo­ple get so much out of this face-to-face inter­ven­tion. It’s incred­i­bly valuable.

You do talk to some of the tutors, you know, peo­ple that are liv­ing as well with arthri­tis and pain – how it changes their life to be able to see the change in oth­ers. They’ll have gone through the pro­gramme them­selves; they’ll have been par­tic­i­pants on the course orig­i­nal­ly and they’ve got that con­fi­dence. They want to give some­thing back and they’ve come on to be trained as a tutor, as a vol­un­teer, and then they’re then giv­ing back to oth­er peo­ple and so they get ben­e­fits out of see­ing oth­ers change through the pro­gramme. It’s a real­ly effec­tive growth, so that’s what self-man­age­ment is all about.

Roley: When we have a long-term painful con­di­tion, we tend to do two com­mon things. One: we avoid doing the things which we think will make our pain feel worse. Two: we do more on days when we feel bet­ter – on our good days – and then less on those bad, painful days.

Dur­ing this ses­sion, we’re going to look at set­ting goals, work­ing towards them, and tak­ing con­trol. If we avoid doing things which we think will make our pain feel worse, and we do more on good days and less on bad days, we’re los­ing con­trol – we [are], are[n’t] we? We’re being dic­tat­ed to. The whole aim of goal-set­ting is to take that con­trol back for our­selves, because remem­ber, we can only change what we can control.

The first thing is, we need to set our plan towards some­thing that we real­ly want to do. If it doesn’t involve inspir­ing activ­i­ties, then we’re prob­a­bly not going to suc­ceed. But it’s got to be achiev­able. Can it be bro­ken down, you ask your­self, into small, real­is­tic steps? It’s impor­tant actu­al­ly to know just how achiev­ing your goal is going to help you in your gen­er­al life and liv­ing. Is it going to give you health ben­e­fits, increased con­fi­dence? Well if you suc­ceed, suc­cess breeds suc­cess. That’s why it’s so impor­tant that it’s achiev­able. It’s why it’s so impor­tant that there are small, real­is­tic steps along the way that you can reach out and grasp and say, yes, I am on the way, I am suc­ceed­ing. Because once you get that feel­ing of suc­ceed­ing, it will take you from one step to the next. Jill, what’s your goal going to be?

Davies: Well, you know, in the last cou­ple of years, I’ve had prob­lems with my feet and I’ve had oper­a­tions on my feet. I live on a hill, quite [a] steep hill and, before I had my feet done, I could walk up and down that hill with a dog, get a bit of a pull as well – not too bad at all. But now, I wouldn’t even enter­tain it at the moment. So to be real­is­tic, I’m only going to go halfway down; take the dog with me [to] this nice spread of grass where he can have a lit­tle run around, and then walk back. So that’s what I’m going to do next week, and I’m going to do it…three times.

Roley: Good. And your lev­el of con­fi­dence in suc­cess on a scale of one to ten?

Davies: Eight.

Roley: Eight, that’s good. What I’m going to do, I’m try­ing to lose weight at the moment – my doctor’s told me I’ve got to. And I’m going to not eat any pota­toes, or pas­ta, or rice. Sugar’s out, Can­der­el [arti­fi­ci­cal sweet­en­er] is in. And by healthy eat­ing, cut­ting down my por­tions of meat a lit­tle bit, I’m going to try to lose anoth­er, let’s say, two pounds in the week. That’s my aim, just two pounds. My lev­el of con­fi­dence is high at the moment because I’ve just lost ten pounds. I reck­on I’ve got an eighty or nine­ty per­cent chance of get­ting that.

That is what we mean by a goal-set­ting plan. What is my plan going to do? It’s going to low­er my weight; it’s there­fore hope­ful­ly going to low­er my blood pres­sure, and it’s going to make me able to move a lit­tle bit more freely. And if it can do all those things, I’ll get the ben­e­fits of the extra exer­cise as we go on. So, if you’d like to write down your own goal-set­ting plan, we’re going to ask you to car­ry out this plan dur­ing the next week and come back and tell us, some of you next week, how well you got on with it.

[To Evans] We try to encour­age peo­ple to make changes for the bet­ter, to use their lives in a way which is per­haps going to help them looks out­wards more than inwards. Because with a chron­ic pain con­di­tion, it’s so easy to turn in on your­self, rather than to look out and move forward.

Evans: There were 17 par­tic­i­pants today, includ­ing me. What do you hope they will get out of it?

Roley: We can’t expect that every­body here today will take hold of every­thing that we’ve talked about and go and start prac­tis­ing it imme­di­ate­ly. What we do hope is that each per­son here will take a dif­fer­ent aspect of the course to heart, find that it suits them and bring that into their lives and hope­ful­ly, that will cause them to find a lev­el of improve­ment in their dai­ly cop­ing with pain.

Evans: What sur­pris­es me is that you’re encour­ag­ing peo­ple or teach­ing peo­ple very, very sim­ple things – breath­ing, relax­ation, tak­ing time for them­selves… Why should they have to come to a work­shop like this to learn that?

Roley: Life is very busy these days. When I wrote a let­ter years ago, it would take a week to get there, a week to get back and I wouldn’t have to answer it for a week after that. Now, with an email, I’m answer­ing it ten min­utes after I wrote the first let­ter. And all that caus­es stress to build up and peo­ple tend to for­get them­selves and for­get that they need care as well as look­ing after peo­ple outside.

It’s also a fact that peo­ple need to be aware of these tech­niques. It’s easy to over­look them. How many peo­ple, for exam­ple, think of actu­al­ly plan­ning their day? A sim­ple plan of a day makes life run so much more smooth­ly and looks after all the joints. I was talk­ing to one of these peo­ple today just about that, about how, by plan­ning, she could in fact improve her way of life. Things like doing part of a job, mov­ing on to anoth­er job, build­ing a rest into the day – it sounds sim­ple. It’s log­i­cal, but how many of us actu­al­ly do it with­out a lit­tle bit of a hint from outside?

Evans: We’ve spent three hours here on day one, you’ve sent them away for a week now, and we’ll meet here again next Mon­day. How do you think they’re going to take [on] what you’ve said today in the next week?

Roley: I think [with] the fact that they’ve tak­en away a plan to make life bet­ter, I think the first thing we will notice is that they will bring it back and many of them will be eager to tell us how well they’ve per­formed [in] the tasks. It may well be that they come back hav­ing tried some of the oth­er tech­niques that we’ve men­tioned as well. But I think they will come back with their work plans and many of them will have suc­ceed­ed and be delight­ed with themselves.

Evans: Thank you very much indeed. We’ll see you next week.

Roley: Okay, look for­ward to it. Thank you.

Evans: Her­bie Roley. So with week one of Arthri­tis Care’s Chal­leng­ing Pain work­shop over, let me just give our usu­al words of cau­tion, that whilst we believe the infor­ma­tion and opin­ions on Air­ing Pain are accu­rate, sound, and 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.

Now with that in mind, Chal­leng­ing Pain is of course about self-man­age­ment. So what role does your health pro­fes­sion­al now have? Rachel Gondwe:

Gondwe: We don’t want doc­tors to think or con­sul­tants to think about self-man­age­ment as an extra, but we want to see it as an inte­gral part of somebody’s care path­way. And we’re work­ing with the Avon Orthopaedic Cen­tre, close to Bris­tol. We’re work­ing with Chal­leng­ing Pain and we’re look­ing at pre and post-treat­ment of peo­ple [who have] had total hip replace­ments. The study will have the con­trol com­po­nent of peo­ple that go through the nor­mal path­way, and then our research com­po­nent, [in which] ran­dom par­tic­i­pants will be tak­ing part in Chal­leng­ing Pain before their surgery, and then once they have com­plet­ed their surgery – about 6 to 9 weeks post-surgery – they are going to be offered a refresh­er pro­gramme, just a one-day pro­gramme, where those patients will be able to recap what they learnt on a Chal­leng­ing Pain course.

We’re also run­ning this close­ly with the phys­io­ther­a­py depart­ment, so the addi­tion to Chal­leng­ing Pain is that they will get an exer­cise, a full exer­cise com­po­nent to it. We men­tion exer­cise, obvi­ous­ly, and the ben­e­fits of exer­cise with­in Chal­leng­ing Pain, but we don’t have the phys­io­ther­a­py ele­ment that the physio depart­ment can offer us, so that’s being includ­ed in this tri­al as well. So that’s look­ing at the role of self-man­age­ment in man­ag­ing peo­ple under­go­ing total hip replace­ments. And that’s ongo­ing at the moment and we just are wait­ing to see the results of that but it’s quite an inter­est­ing study and we real­ly hope – we know – that the ben­e­fits will be great for those par­tic­i­pants, and hope­ful­ly this will then become part of a rou­tine care for some­one await­ing a total hip replacement.

****

Davies: Nice to see you again. Hope you all had a good week. So dur­ing this ses­sion today, we’re going to have some feed­back [on] our goal-set­ting of last week. That’s what we’re going to start off with.

Roley: I’ll go first myself. My aim was to lose two pounds. I can now say, a mere two pounds, because I lost four.

Group: Wow, well done!

Roley: And I haven’t even opened a bis­cuit box since last week [group laughs]. So, real­ly, I’m very pleased with myself. And the steps that I took – things like using a small­er plate, cut­ting right down on the car­bo­hy­drates, increas­ing the amount of veg­eta­bles and fruit that I ate have all worked bril­liant­ly. So I’m real, real pleased with myself. I real­ly am. Jill?

Davies: Well my goal is to get back as fit as I was pre-foot oper­a­tion which would have last­ed over 2 years. And because I live on a hill and it’s quite steep, I decid­ed that [I’d try] to get fit [by] going up and down the hill, but only halfway to start off with, because it’s a big hill. And I said I’d do it three times, and I did do it three times, but the third time, I real­ly had to make myself do it.

So this is where goal-set­ting comes in, because if I hadn’t said I was going to do three, I wouldn’t have done it. The dog is delight­ed! So yea, by just set­ting goals, this is how you get your­self to achieve things. And achiev­ing things makes you feel good, which has a knock-on effect on how you respond to your pain and your oth­er symptoms.

Roley: Is there any­body else who’d like to tell us what they’ve done?

Evans: My long-term goal is to increase my fit­ness lev­els with­out boom­ing and bust­ing. And the ben­e­fits of low­er blood pres­sure, depres­sion – well, less depres­sion – a reduced pain and a feel-good feel­ing. I actu­al­ly set myself a task this week. I wrote down self-con­trol, don’t push your­self, leave the house every day, which I wasn’t doing before, and take breaks at work. I’ve left the house every day for a short walk around the block, but I haven’t tak­en breaks at work. In fact, I’ve just seen this now and it’s remind­ed me I haven’t tak­en breaks at work. So I’ve failed in that. I real­ly need to push myself more.

Davies: So you want it promi­nent, like on the fridge door or some­thing, to keep remind­ing you?

Evans: Yes. And self-con­trol obvi­ous­ly, that’s gone out the win­dow as well, because I haven’t tak­en breaks at work.

Roley: Breaks are very impor­tant when you’re doing things, and they can make a dif­fer­ence, as you say, between suc­cess and failure.

Davies: We’re going to talk about bet­ter com­mu­ni­ca­tion skills because those are very impor­tant, espe­cial­ly when you’ve got a chron­ic con­di­tion and you need to con­vey to peo­ple how you feel and what you need.

Roley: Now, it’s very impor­tant that we com­mu­ni­cate our needs to our fam­i­ly, to our friends. And it’s very impor­tant that they do know how to sup­port us. We may need to tell them how they can help us with our pain man­age­ment, because friends are for that, aren’t they, fam­i­ly is for that. It’s for sup­port; it’s for help. And if they can help you, a real friend, or a mem­ber of the fam­i­ly, cer­tain­ly will. Now dur­ing the next activ­i­ty, we’re going to explore how learn­ing to com­mu­ni­cate can help with cop­ing with pain.

Toyin Onasanya: Com­mu­ni­ca­tion is so dif­fi­cult, and I must say that it’s not easy to com­mu­ni­cate to the oth­er per­son. Some­times you know what you’re try­ing to say, but it can be some­times hard to do that.

Evans: This is Toyin Onasanya. She’s Arthri­tis Care’s South Eng­land train­ing administrator.

Onasanya: You know, you go into your GP and you’re think­ing, ‘oh I’ve got these symp­toms’, [but] your GP’s think­ing, ‘oh, they’re just symp­toms of headache and noth­ing more’. So you need to under­stand your con­di­tion; you need to have been on a self-man­age­ment work­shop [such] as this, where we break it down for you and try to explain cer­tain things. So that when you go in there, you’re more assertive and can say: ‘See, I’ve been on Arthri­tis Care’s Chal­leng­ing Pain man­age­ment work­shop. I have learnt about my pain, and I see this is the way my pain goes. This is what makes my pain bet­ter; this is what makes my pain worse. I have also done stress and I find that my stress pours very high.’

A lady there says, before attend­ing the work­shop, she was nev­er assertive. She just goes to her GP and she finds out at the end of the day [that] she comes out not get­ting any­thing. So she goes in and what­ev­er her GP says, she just comes out like, ‘okay, that’s it’. She’s resort­ed to the fact that there is just noth­ing she can do. There is no way. She’s got maybe arthri­tis as a… you know, peo­ple want to find out if they’ve got that con­di­tion, but they need to be able to say more before they can be sent to me. And so she said, ‘oh, I thank you so much for the train­ing work­shop, because I was able to go into my GP and be assertive and I got results.’

Evans: Now, as we’ve heard, the Chal­leng­ing Pain work­shops run over two half-day ses­sions. So can some­thing as short and sharp as that real­ly have any long-term ben­e­fit? Well, in its pre-release days, Arthri­tis Care car­ried out a study with the Eric Angel Pain Clin­ic at Der­ri­ford Hos­pi­tal in Devon. Rachel Gondwe again:

Gondwe: We ran about 18 dif­fer­ent work­shops, and we did pre and post-course ques­tion­naires and we did focus group dis­cus­sions as well to find out how effec­tive the course was and did it meet what peo­ple were look­ing for. I mean, the study was amaz­ing and it real­ly proved that the two-week pro­gramme was just as effec­tive as the six-week pro­gramme. We’ve got less drop-out rates. It reduced people’s pain and it had a long-last­ing effect because we did the study 6 and 12 months lat­er as well. We did a fol­low-up 6 and 12 months lat­er and it was still as effec­tive 12 months on at reduc­ing pain, increas­ing people’s self-con­fi­dence or self-effi­ca­cy to man­age their con­di­tion them­selves. It did show that there [were] reduced GP vis­its and it also decreased people’s health dis­tress – their anx­i­ety around their health.

Mac­Dowall: As a tutor, I’ve actu­al­ly had peo­ple weep with relief, because they’re just so hap­py to be with some­one who under­stands what they’re talk­ing about.

Evans: But what do you get out of teach­ing the course?

Mac­Dowall: See­ing its effect, which varies from per­son to per­son, but some­times you can see quite dra­mat­ic changes in peo­ple and that’s love­ly. The man who cried because he was so relieved to meet oth­er peo­ple in the same sit­u­a­tion and who said he’d thought that every­one else with a con­di­tion was cop­ing bril­liant­ly and it was just him who wasn’t. And that that was because there was some­thing wrong with him, [that] it was some char­ac­ter flaw in him. And he actu­al­ly just real­ly cried because he was so relieved at the thought that, you know what, every­one else is not cop­ing that brilliantly.

One lady was sort of bent over and couldn’t straight­en up. Then she said, ‘look at me, I’m straight! For the first time in years.’ Or some­times it’s just con­fi­dence – peo­ple hav­ing the con­fi­dence to be a bit more active or to do a bit more. We ask peo­ple to rate their pain, so that’s love­ly, if you can see it’s gone down. Even if it’s gone down slight­ly, every lit­tle, as they say, helps.

Evans: Kirsten Mac­Dowall. Now there’s so much more to the Chal­leng­ing Pain work­shop than I’ve been able to cov­er in just half an hour, so you’ll have to go on one your­self to find out what it can do for you. All the information’s at Arthri­tis Care’s web­site, which is arthritiscare.org.uk. So that’s all from this edi­tion of Air­ing Pain. Don’t for­get that you can put a ques­tion to our pan­el of experts, or just make a com­ment about these pro­grammes via our blog, mes­sage board, email, Face­book, Twit­ter, and of course, pen and paper. All the con­tact details are at the Pain Con­cern web­site, which is painconcern.org.uk, and from there you can down­load all edi­tions of Air­ing Pain.

I’ll leave the last words to Kather­ine Williams. She was one of my fel­low par­tic­i­pants on the Chal­leng­ing Pain workshop:

Williams: I’m find­ing the course very help­ful because suf­fer­ing in a lot of pain, you feel like you’re the only one. Meet­ing lots of peo­ple here at the course has made me realise I’m not [as] iso­lat­ed as I am. And they’re touch­ing on feel­ings and emo­tions that you’re hav­ing. You are very proud and you don’t dis­cuss these emo­tions that you’re hav­ing and they have such a huge impact on your life. All these neg­a­tive, bad feel­ings that you’re hav­ing that leads to depres­sion and not being able to cope, that you don’t real­ly admit to some­body that you know so well. And I found it real­ly help­ful, say­ing it myself to oth­er peo­ple and lis­ten­ing to oth­er peo­ple, so I found the course very, very useful.

Evans: How did you find out about the course?

Williams: I care for my daugh­ter [who] has dis­abil­i­ties and obvi­ous­ly, if my health goes down, where’s she going to go? It’s going to cost the gov­ern­ment loads of mon­ey to keep my daugh­ter some­where, and I think it was the Car­ing Times they send you, and there was an adver­tise­ment in there for a course called All About Me, which helps you with depres­sion and anx­i­ety and stress and all things like that. So when I signed up because I thought this could be for me, they rec­om­mend­ed this course in Cardiff for me with pain management.

Evans: Have you heard about pain man­age­ment pro­grammes before?

Williams: No, nev­er. Nev­er heard of them.

Evans: Why not?

Williams: Because when you’re in pain, you keep it to your­self. You don’t share it with any­body, that’s just a pride thing, real­ly, I think? And you just feel that’s your life – that’s what you’re dealt with – keep it to your­self and you have to cope with it. But it reach­es a cer­tain stage in your life where you think, I can’t do this anymore.

Evans: Would you active­ly look for more pain man­age­ment pro­grammes now?

Williams: Def­i­nite­ly, yes.


Con­trib­u­tors:

  • Jill Davies and Her­bie Roley, Chal­leng­ing Pain work­shop leaders
  • Rachel Gondwe, train­ing ser­vices coor­di­na­tor with Arthri­tis Care
  • Kirs­tine Mac­Dowall, vol­un­teer tutor at Arthri­tis Care
  • Toyin Onasanya, Arthri­tis Care’s South Eng­land train­ing administrator
  • Kather­ine Williams, Chal­leng­ing Pain work­shop participant.

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