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Transcript – The Project: Breaking the barriers to self-management

Self-man­age­ment – we know it’s one of the things that can most improve the lives of peo­ple liv­ing with pain, but all too often it’s not being put into prac­tice successfully.

After speak­ing to peo­ple with pain and health­care pro­fes­sion­als, we’ve been able to put togeth­er a clear­er pic­ture of what is going wrong and how we might make things better.


Katy Gor­don: We are work­ing on a two-year project look­ing into the bar­ri­ers to self-man­age­ment of chron­ic pain in pri­ma­ry care. So the first year of that was a research project, gath­er­ing data and speak­ing to lots and lots of peo­ple to get some infor­ma­tion on what they thought the bar­ri­ers were. So we’ve kind of fin­ished that now, and now we’re look­ing into devel­op­ing some resources that might help over­come some of the barriers.

We basi­cal­ly found four, kind of main cat­e­gories of bar­ri­ers and under each one of those cat­e­gories there was var­i­ous sub-themes. The first one was the patient and health­care pro­fes­sion­al con­sul­ta­tion. So things that hap­pen as part of that con­sul­ta­tion that maybe become a bar­ri­er to self-management.

The sec­ond one was what we called ‘patient expe­ri­ence’, so their expe­ri­ence of pain and the emo­tions that might be attached to hav­ing chron­ic pain might become a barrier.

The third cat­e­go­ry was called ‘lim­it­ed treat­ment options’. So that kind of cov­ered the ten­den­cy for peo­ple, of doc­tors and patients as well, to expect their pain would be treat­ed with med­ica­tion and noth­ing else, so they didn’t real­ly look into some self-man­age­ment strate­gies they might want to use.

And then the fourth cat­e­go­ry was organ­i­sa­tion­al con­straints. So that’s the sort of thing like real­ly short appoint­ment times, very long wait­ing lists, that sort of thing that makes it hard­er for peo­ple to do self-management.

Dr Mar­tin John­son: Chron­ic pain self-man­age­ment is still in its infan­cy, as the recent report has shown. Peo­ple are not con­fi­dent in actu­al­ly giv­ing that advice, which is unfor­tu­nate­ly why a report today has shown that the use of opi­oid con­tain­ing prepa­ra­tions has gone up ten per cent in the last year. Because it is the nat­ur­al instinct for doc­tors to pre­scribe, it’s the one area where drugs are rel­a­tive­ly cheap, in terms of just nor­mal anal­gesics, so it’s easy to reach for your com­put­er pre­scrip­tion pad and pre­scribe, with­out giv­ing a lot of advice. Because unfor­tu­nate­ly access to a lot of oth­er ser­vices is either dif­fi­cult, or not appro­pri­ate. But I think GPs have a huge role to play in the self-man­age­ment of chron­ic pain.

Gor­don: It was real­ly, real­ly com­mon for peo­ple to say, I was made to feel like it was all in my head. Peo­ple say­ing that they felt like if they’d gone for a scan and they didn’t find a lump or some­thing, then it was basi­cal­ly, well there’s noth­ing wrong with you, just go away, that sort of thing. Yeah, that was real­ly common.

And on the flip side of that, the doc­tors said they often found it quite dif­fi­cult to talk to patients, per­haps. So there’s not maybe a spe­cif­ic med­ical rea­son that they can pin­point for hav­ing their pain, so if the doc­tor start­ed explor­ing wider aspects of their life and some of the psy­cho­log­i­cal aspects, that was a very dif­fi­cult con­ver­sa­tion to have with the patient, because as soon as you start talk­ing about that sort of thing the patient will be like, ‘he doesn’t believe me, he said it’s all in my brain’.

So quite an inter­est­ing con­trast between the two sets of focus groups that we ran. So the doc­tors were say­ing, ‘we can under­stand why patients think that’s what we’re say­ing, but it’s actu­al­ly not what we’re say­ing, but we do need to explore the kind of wider psy­cho­log­i­cal aspects of pain’.

Dr Ollie Hart: Some­times peo­ple per­ceive self-man­age­ment as being the health­care pro­fes­sion­al just fob­bing you off and say­ing, ‘no, back to you, you’ve got every­thing’. But I think what we’re real­is­ing more and more as health­care pro­fes­sion­als is that we need to have this dynam­ic rela­tion­ship, where we are sup­port­ing peo­ple to self-man­age. And it’s more of a part­ner­ship approach real­ly, where a health­care pro­fes­sion­al acts more like a coach real­ly, you know.

We’ve got Jess Ennis in Sheffield, you know, so she does the work, the train­ing, but the coach guides her and helps her how to man­age injuries that come up and gauges how much, how often and when. But at the end of the day it’s Jess Ennis that has to do the work. You can apply a sim­i­lar sort of thing to self-man­age­ment, with the rela­tion­ship with the health­care pro­fes­sion­al real­ly. Peo­ple have to make the deci­sions for them­selves, we’re not there to hold their hand all the time, but as health­care pro­fes­sion­als we can coach you in what sort of self-man­age­ment deci­sions might be best for you at that par­tic­u­lar time.

Gor­don: Num­ber two, we called it patient expe­ri­ence. So part of that, well a big one of that, was the sort of emo­tion­al impact of chron­ic pain. So patients spoke about feel­ing low, feel­ing depressed, some­times feel­ing sui­ci­dal. And if that’s how you’re feel­ing, it becomes very dif­fi­cult to think, ‘well maybe I should go out for a walk because that’ll help me man­age my pain, or maybe I need to pace’, you know. To be in that mind frame it becomes very dif­fi­cult to then start doing self-man­age­ment techniques.

So part of it was that, the kind of emo­tion­al impact. And also, well this was more… the doc­tors some­times talked about people’s abil­i­ty to self-man­age. Because actu­al­ly there prob­a­bly is a whole host of peo­ple who are self-man­ag­ing very, very effec­tive­ly, and very rarely go to their doc­tors, so prob­a­bly the peo­ple that do use pri­ma­ry care are peo­ple who are per­haps not as suc­cess­ful­ly self-man­ag­ing. And the doc­tors kind of talked about some of the rea­sons that might be, per­haps they maybe have a very chaot­ic lifestyle and there­fore fins it very dif­fi­cult to self-man­age. There was a lit­tle bit about people’s abil­i­ty and under­stand­ing of self-man­age­ment that per­haps was one of the rea­sons that they didn’t do it as well.

John­son: There are some very sim­ple mes­sages that we can empow­er peo­ple with. I equate it with obe­si­ty, so obe­si­ty years ago, doc­tors were not con­fi­dent in man­ag­ing it, but there’s been a lot of train­ing that’s gone on. So peo­ple are a lot more used to deal­ing with that now and actu­al­ly giv­ing appro­pri­ate advice. And I think giv­ing self-man­age­ment train­ing, or sup­port­ed self-man­age­ment, that’s what we should be call­ing it. We know the research shows that patients do a lot bet­ter if they are sup­port­ed by some form of health­care prac­ti­tion­er. If we go down that route I’m sure that many of our chron­ic pain suf­fer­ers would get a far bet­ter deal.

Gor­don: Num­ber three was, we called it ‘lim­it­ed treat­ment options’. So, the big one of that was real­ly, which we men­tioned briefly before, was the med­ical­i­sa­tion, so every­one thinks that it should get treat­ed by painkillers. And that’s almost what they were taught, a few doc­tors felt very strong­ly that at med­ical school you’re taught there’s a prob­lem, here’s a solu­tion and the solu­tion will be giv­ing you med­i­cine and there was no oth­er thought of the kind of wider things that they could be doing. And also, again on the flip­side, patients some­times go to a doc­tor and expect to get a pre­scrip­tion and they’re not real­ly inter­est­ed in per­haps talk­ing about any of the oth­er things.

So med­ical­i­sa­tion was one of the ones that was a big one, but quite a cul­tur­al shift, I think, that we need to get to where peo­ple start to think, well it’s not just about the doc­tor fix­ing me.

Hart: The skill as a health­care pro­fes­sion­al and as a patient, you know, learn­ing to trust each oth­er and work­ing togeth­er. The patient will know what their life is like and what’s going on for them, what expec­ta­tions and lim­i­ta­tions they have on what they can and can’t do. And the health­care pro­fes­sion­al will know what things work for oth­er peo­ple in sim­i­lar sit­u­a­tions. So I guess it’s about form­ing a rela­tion­ship togeth­er and shar­ing your exper­tise, isn’t it? And com­ing to a plan, set­ting some goals togeth­er, but it’s a joint part­ner­ship thing.

Gor­don: Even the doc­tors who were real­ly bought into self-man­age­ment would say, ‘I actu­al­ly don’t have time to talk about chron­ic pain in the detail it needs, I don’t have time to talk about self-man­age­ment, so at the end of an appoint­ment I give a pre­scrip­tion’. So even the ones who are real­ly, real­ly, bought into the idea quite often strug­gle to talk about it.

Hart: Tra­di­tion­al­ly GPs have ten min­utes, don’t we? And that’s not a long time. And that ten min­utes includes me look­ing at your notes before you come in to see me, doing what we do togeth­er and then writ­ing up notes after­wards. And the note-keep­ing is impor­tant, because oth­er­wise I won’t remem­ber every­thing we’ve talked about for the next appointment.

So a lot to do in ten min­utes. I chunk things up, is the phrase. I’ll often agree an agen­da with the patients, right we’ve got ten min­utes togeth­er, what can we use­ful­ly do today? But I might want to see you again in a cou­ple of weeks, or a month’s time. I think what is increas­ing­ly becom­ing the sit­u­a­tion is that we’re try­ing to get a lit­tle bit more sophis­ti­cat­ed in how we do things, so some­times we might need longer, you know, recog­nise that if someone’s in a real­ly dif­fi­cult posi­tion, there’s some com­pli­cat­ed things going on, we might need twen­ty min­utes, or half an hour. But there also might be oth­er ways that we could interact.

John­son: I think the patient bar­ri­er is they’ll want a cure. I’m con­vinced that’s the main bar­ri­er and there­fore when they see self-man­age­ment, ‘well, aren’t you going to try and cure me and send me for anoth­er test’. And they all go for all these tests and they’re all neg­a­tive, or they find some­thing that they then catastrophize.

For the lis­ten­ers, a very good exam­ple of that is an MRI scan, so you’ll go for an MRI scan and I know that most peo­ple over the age of twen­ty are going to have a find­ing on an MRI scan, even if you don’t have any pain. It is nor­mal, absolute­ly nor­mal, but then when, unfor­tu­nate­ly some of my orthopaedic col­leagues might say, ‘oh, you’ve got a bit of crum­bling in your spine, dear, that’s all it is’, so peo­ple then stop doing it.

I would like to start what I call ‘the first mes­sage cam­paign’. What we tell peo­ple is so, so impor­tant. That if you do things, your spine isn’t going to crum­ble, peo­ple are con­cerned that they’re going to end up in a wheel­chair, that’s so com­mon. So, to get this edu­ca­tion and ratio­nal­i­sa­tion to patients, that they can do some­thing for them­selves, I think is the biggest barrier.

Hart: Self-man­age­ment is a real skill, of recog­nis­ing what’s right for you, per­haps going against, what your nat­ur­al reflex­es might be sometimes.

Gor­don: Knowl­edge of what the bar­ri­ers might be has to be the first step to over­com­ing some of those bar­ri­ers. So hope­ful­ly the report will give the peo­ple the knowl­edge and they might be able to use it to over­come the barriers.


Con­trib­u­tors:

  • Katy Gor­don, Researcher, Pain Concern
  • Dr Mar­tin John­son, GP
  • Dr Ollie Hart, GP

Comments

Christine nelder

All this is so rel­e­vant, i have per­sis­tent chron­ic pain and as a result of this I suf­fer from depres­sion. I have a great GP
who can­not pre­scribe any more painkillers or anti­de­pres­sants, but is very sup­port­ive with­in the time con­straints avail­able. A great orthopaedic sur­geon who has recog­nised my pain prob­lems, but as I am dis­charged from his care ion a few weeks after my most recent oper­a­tion I will lose his great sup­port. I have been mas­sive­ly lucky to have found an osteopath who has treat­ed me for var­i­ous mus­cu­loskele­tal prob­lems as well as hav­ing a par­tic­u­lar inter­est in chron­ic pain. But at the end of the day this is an expen­sive way to have ongo­ing care. My GP has got me an appoint­ment with Som­er­set pain man­age­ment in a few weeks. I think one of the things that helps with self man­age­ment is ongo­ing sup­port to encour­age you when you flag and some­one you can talk to when to feel you are failing.
Just to say this is a great website !!

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