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Transcript – Pain Management Programmes

‘Self-man­age­ment’ doesn’t mean being aban­doned to ‘get on with it’ alone. Sup­port can come from health­care pro­fes­sion­als, fam­i­ly, friends, vol­un­tary organ­i­sa­tions or sup­port groups.

If pain is hav­ing a big impact, pain man­age­ment pro­grammes can help peo­ple to get their lives back on track. This involves focus­ing on what’s most impor­tant in life – this could be rela­tion­ships, activ­i­ties, work – and learn­ing how to be more involved in them with­out flar­ing-up the pain.

Top tip: con­trol the pain by find­ing your base­line. That’s a lev­el of activ­i­ty you know you can do with­out flar­ing-up the pain. From there you can build up slowly.

Find out more: lis­ten to par­tic­i­pants and health­care pro­fes­sion­als on the Glas­gow Pain Man­age­ment Pro­gramme shar­ing their expe­ri­ences on Air­ing Pain 32: Pain Man­age­ment Pro­grammes.


Chris­tine Hamil­ton: If I had­n’t gone on that pain man­age­ment pro­gramme, I prob­a­bly would­n’t be here today, that was my last dash, my last hope. I kind of made my mind up I was­n’t going to car­ry on – sor­ry – [tear­ful] I’ve told my hus­band this as well, so he knows.

Paul Cameron: There are dif­fer­ent types of self-man­age­ment: there’s sup­port­ed self-man­age­ment that requires the indi­vid­ual to have a net­work of peo­ple around them to help them and that could be health pro­fes­sion­als, vol­un­teer organ­i­sa­tions, sup­port groups, fam­i­ly; and then you’ve got the true… the self-man­age­ment of lit­er­al­ly just look­ing after it yourself.

And actu­al­ly, it might be like­ly that the major­i­ty of the pop­u­la­tion do self-man­age like that, because if you’re to go by those fig­ures of 18 per cent of the pop­u­la­tion, clear­ly, hun­dreds of thou­sands of peo­ple do not access the char­i­ty groups and the pain clin­ics and their GPs. Most peo­ple will man­age them­selves. And I think we’ve all known when we wake up with back pain and we get on with it, we do things our­selves. Most peo­ple man­age in that way and that’s self-man­age­ment as well.

Gra­ham Kramer: I don’t actu­al­ly like the term ‘self-man­age­ment’. I think it’s a mis­nomer; it implies that you’re on your own. And it’s not, it’s very much about a mutu­al part­ner­ship and you’re in it togeth­er. And I think that’s one of the down­sides of the term ‘self-man­age­ment’. Peo­ple think it’s over to you and it’s not entire­ly at all.

Cameron: But you then have the oth­er end of the spec­trum, where peo­ple with much more com­plex­i­ty around pain and all the oth­er arms to that in terms of the social and work life and all the impacts it’s hav­ing on their life. These peo­ple tend to need a bit more sup­port, par­tic­u­lar­ly if they’ve gone through a his­to­ry of a lot of hos­pi­tal appoint­ments, dif­fer­ent spe­cial­ists doing dif­fer­ent tests and then they end up in a pain clin­ic. And that’s gen­er­al­ly the peo­ple we see here, those that require much more sup­port­ed self-management.


Mar­tin Dun­bar: Self-man­age­ment isn’t just get­ting on with it, it’s some­thing much more active than that. It’s recog­nis­ing what’s impor­tant to the per­son, under­stand­ing that activ­i­ty needs to be man­aged in a cer­tain way – or it helps any­way if activ­i­ty is man­aged in a cer­tain way. Plen­ty of patients of course will tell you that they have tried to get on with it; they’ve tried their hard­est to get back to some­thing; they’ve maybe tak­en their doctor’s advice and gone swim­ming and they’ve end­ed up spend­ing a week in bed in agony after­wards and so they strug­gle to see how that might work. So it is a very active process.

Lars Wil­iams: Peo­ple come to us in the in the pain ser­vice at dif­fer­ent stages. If they’re at the stage of rel­a­tive­ly recent prob­lem or recent diag­no­sis, under­stand­ably, they are still look­ing for a cure and they can’t envis­age lead­ing the rest of their lives with this chron­ic prob­lem. It’s under­stand­able – peo­ple expect that pain is some­thing you just take a tablet for and it goes away. We’ve got all this tech­nol­o­gy, we’ve got com­put­ers, some­thing as sim­ple as pain should be easy to get rid of.

So I think if you’re still at that ear­ly stage, then you might take on board on an intel­lec­tu­al lev­el what’s being taught in the pro­grammes, but deep down you’ll prob­a­bly think ‘well, that does­n’t real­ly apply to me because I’m going to fight this thing. I will get to the bot­tom of it and I will get it fixed.’ So I think if you’re still at that stage then you prob­a­bly won’t get much out of the group.

Hamil­ton: I was refused the first time I was inter­viewed for the pain man­age­ment pro­gramme because I was­n’t well enough. So the oppo­site of what the con­sul­tant said, that I basi­cal­ly was­n’t well enough, I was­n’t in the right place to be open enough to the tools and tech­niques. So I was refused the first time I applied for it and I walked out of the inter­view feel­ing dev­as­tat­ed, but actu­al­ly I under­stood why. So I had to pick myself up a lit­tle bit and I did pull myself up a wee bit so that when I was inter­viewed again, I was in a much more pos­i­tive mindset.

Williams: A lot of the time, some days we will see some­body who has been re-referred two years down the line and they are start­ing to think, ‘well this is how my life is going to be, so I should now real­ly make the most of it, rather than wast­ing all this time and ener­gy look­ing for some­thing that isn’t there.’

Dun­bar: I think the most impor­tant thing is to help peo­ple recog­nise that med­ical man­age­ment has its lim­i­ta­tions, I think. Although it can be very suc­cess­ful for some peo­ple, there are cer­tain­ly lots of peo­ple where med­ical man­age­ment has­n’t helped enor­mous­ly and an awful lot of peo­ple in the mid­dle who it’s helped par­tial­ly, but then it’s come with prob­lems itself, side effects from med­ica­tion. So it’s help­ing peo­ple to accept that they’re prob­a­bly always going to have a degree of pain – that’s a big part of it – but that their efforts around pur­su­ing med­ical help has only pro­duced lim­it­ed ben­e­fits for them and also pro­duced some dif­fi­cul­ties for them frequently.

So that sets the scene for work­ing on rela­tion­ships, activ­i­ties, hob­bies, work even, despite hav­ing ongo­ing pain. I think for a lot of peo­ple that’s the men­tal shift, I think a lot of peo­ple tend to work with the mod­el that if they rest­ed enough, then their pain would set­tle, then they would be able to get back to doing their things. But that kind of leaves aside the fact that things dete­ri­o­rate any­way if you’re not doing them.


Cameron: Man­ag­ing your pain is not about doing less activ­i­ty, it’s about doing it in a clever way. It’s about pac­ing your­self. So, for exam­ple, if some­body knows says they can walk 100 metres but by the 100th metre they are in agony, they have to stop and their pain is con­trol­ling them. We want them to con­trol the pain, rather than the pain con­trol­ling them, so we would ask them to walk 50 metres, stop, pause – just have a very short break – anoth­er 50 metres.

And then if you keep doing that, you can actu­al­ly walk 200 metres, 300 metres, 400 metres. So you can actu­al­ly do more activ­i­ty but you haven’t burnt your­self out as it were in the first 100 metres. So it’s recog­nis­ing what your lim­it is, back­ing off on that lim­it and then repeating.

Dun­bar: Then we also help peo­ple to think about what’s impor­tant to them and to set goals around that. Then we look at what’s pre­vent­ing peo­ple from achiev­ing those goals and doing the things that are impor­tant to them. Those bar­ri­ers can be phys­i­cal fit­ness because people’s phys­i­cal health has dete­ri­o­rat­ed while they’ve had this pain prob­lem. It can be con­cerns about man­ag­ing flare-ups, mak­ing sure that they don’t exac­er­bate their pain by doing more. So there’s a whole notion of how to man­age activ­i­ty in a way that will work.

But often, bar­ri­ers are psy­cho­log­i­cal for peo­ple: there’s the moti­va­tion that I dis­cussed already, but peo­ple also fre­quent­ly have con­cerns about what oth­er peo­ple might think of them. They might have con­cerns about how they can man­age feel­ing anx­ious and stressed when they do put them­selves back into sit­u­a­tions that they’ve not been in for a while, so psy­chol­o­gists help with that.

****

Kramer: Peo­ple who are enabled to be in the dri­ving seat of their care, tend to not only live bet­ter, live health­ily, they often have less exac­er­ba­tions of their chron­ic con­di­tion. They often require less med­ica­tion and they often require less hos­pi­tal util­i­sa­tion and, fun­da­men­tal­ly, I sup­pose and in health eco­nom­ics terms, it saves mon­ey. And so, you can invest in sup­port­ing self-man­age­ment and not only do you have improved per­son­al out­comes, you get improved med­ical out­comes as well, so it’s a win-win. You also get a much health­i­er func­tion­ing health economy.

Williams: We mea­sure out­comes in terms of things like depres­sion, anx­i­ety rat­ings, things like chron­ic pain accep­tance score, which is in some ways a mea­sure of psy­cho­log­i­cal flex­i­bil­i­ty, a mea­sure of how will­ing peo­ple are, or able peo­ple are, to live and do things with pain. But often the mea­sures or the changes of mea­sures when you look at them on an indi­vid­ual lev­el, they often don’t cor­re­spond that well to the changes that we see just talk­ing to and lis­ten­ing to what the patients say in the group. It is real­ly inter­est­ing to watch how peo­ple change over the course of the twelve weeks.

Chris­tine Hamil­ton: Three years ago I could­n’t even walk across the floor and I was only on the pain man­age­ment pro­gramme last year, so the tools and tech­niques that I learned have got me to the stage I’m at just now. I’m still learn­ing, I’ve still got my L‑plates on my back, I still make mis­takes and there’s still tools that I maybe look at in the fold­er now and then, and dis­missed at the time, and now I look back and look again.

Dun­bar: When the mes­sages have clicked with peo­ple, then peo­ple do seem to make extra­or­di­nary gains – return­ing to work, for exam­ple, or being able to stay in work, doing the things that are impor­tant to them again. It involves a lot of work on the patient’s part, though – I think that’s a bit of a dif­fi­cul­ty. I think we’re used to a med­ical sys­tem where we’re pas­sive recip­i­ents of what doc­tors and nurs­es and phys­io­ther­a­pists and OTs do to us. And I think in the UK in gen­er­al, we’re in the ear­ly stages of that jour­ney of learn­ing more about self-man­age­ment. But I think it’s true not just in chron­ic pain but in lots of oth­er con­di­tions as well, that there’s an awful lot that peo­ple can do for them­selves and that maybe the health ser­vice isn’t best set-up to pro­vide that, but it’s def­i­nite­ly improv­ing though.

Paul Evans: Has your hus­band got his wife back?

Hamil­ton: No, he’s got a bet­ter wife back! He’s def­i­nite­ly got a bet­ter wife back. He def­i­nite­ly has!


Con­trib­u­tors:

  • Chris­tine Hamilton
  • Paul Cameron, Nation­al Chron­ic Pain Co-ordi­na­tor – Scot­tish Government
  • Mar­tin Dun­bar, Con­sul­tant Psy­chol­o­gist, Glas­gow Pain Man­age­ment Programme
  • Lars Williams, Con­sul­tant in Anaes­the­sia and Pain Med­i­cine, Glas­gow Pain Man­age­ment Programme
  • Gra­ham Kramer, Clin­i­cal Lead for Self-man­age­ment and Health Lit­er­a­cy – Scot­tish Government.

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