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Transcript – Programme 26: Transforming Pain Services: Joining up pain management and involving the patient

The health pro­fes­sion­als work­ing to improve pain man­age­ment, and the impor­tance of get­ting patients more involved

To lis­ten to this pro­gramme, please click here.

The rela­tion­ship between doc­tor and patient is cru­cial in man­ag­ing pain. In this pro­gramme we look at how the British Pain Society’s new­ly launched Pain Patient Path­ways Project should improve the way health pro­fes­sion­als man­age chron­ic pain con­di­tions. We’ll hear from a patient about her var­ied expe­ri­ences with health pro­fes­sion­als and from doc­tors involved with treat­ing pain about the impor­tance of patients get­ting involved in the treat­ment of their own condition.

Issues cov­ered in this pro­gramme include: Patient involve­ment, patient expe­ri­ence, patient voice, edu­cat­ing health pro­fes­sion­als, back pain, depres­sion, com­mu­ni­cat­ing pain, break­down of com­mu­ni­ca­tion, patient liai­son com­mit­tee, GPs, mul­ti­dis­ci­pli­nary, assess­ment process, tai­lored treat­ment, sup­port group and volunteering.

Paul Evans: Hel­lo. I’m Paul Evans and wel­come to Air­ing Pain, the pro­gramme brought to you by Pain Con­cern, the UK char­i­ty that pro­vides infor­ma­tion and sup­port for those of us liv­ing with pain. More infor­ma­tion on fundrais­ing efforts, is avail­able on the Just­Giv­ing page on our web­site which is: painconcern.org.uk.

Dou­glas Small­wood: I think if we can map out what the care that a per­son with a con­di­tion expe­ri­enc­ing pain should receive, if we can map that out and get an agree­ment to it, then we can start to hold clin­i­cians the sys­tem man­ages to account for deliv­er­ing it.

Evans: In this edi­tion of Air­ing Pain, we will be look­ing at how the British Pain Soci­ety’s Pain Patient Path­ways project, should improve the way health pro­fes­sion­als man­age chron­ic pain con­di­tions and, not I hope uncon­nect­ed with this, we will also look at the impor­tance of that cru­cial rela­tion­ship between doc­tor and patient. What hap­pens when it goes well? And what hap­pens when it breaks down?

Jean Smith has numer­ous health-relat­ed con­di­tions, includ­ing, chron­ic back pain and depres­sion. She was not con­fi­dent of being able to speak to me by her­self, so Jeff Williams, a close friend and sup­port for many years, joined us.

Jean Smith: The pain can bring on the depres­sion. So when you recog­nise the signs, I am not say­ing I can do a lot about it, but at least I know in a cou­ple of days’ time it will ease.

Evans: When you said you ‘felt the signs of depres­sion com­ing over you’, what does that feel like?

Smith: [Sigh] You are cheesed off, you can­not focus on a lot of things, when I am bad I sleep a lot, I do not go to the doc­tors unless I have got too.

Jeff Williams: When you were see­ing them, if you went to see the doc­tor for your pain, what would the doc­tor tell you?

Smith: ‘Go and see your psychiatrist.’

Williams: And when you went to see your psy­chi­a­trist what did…

Smith: ‘Go and see your GP.’ They tend to push you from one to the oth­er when you have got dou­ble diagnosis.

Williams: So, in oth­er words, they nev­er actu­al­ly then give you anything…

Smith: And I have one doctor…oh she is love­ly! She sits there – ‘How are you today Jean?’ And I feel like say­ing ‘I am not a lit­tle 5‑year-old, you know I am me. I might suf­fer with depres­sion and men­tal health prob­lems, but, you know, I am still com­pos mentis!’

Evans: Now, we can­not com­ment on indi­vid­ual cas­es, indeed, you will know that we always give these words of cau­tion, 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. But I have to won­der, how many peo­ple as in Jean Smith’s expe­ri­ence, feel that their health pro­fes­sion­al does not appre­ci­ate their circumstances.

Smith: My Social work­er has told me that I am not a very good patient, because when­ev­er the doc­tor asks – or the psy­chi­a­trist – ‘How are you?’ ‘I am fine.’ He said ‘you do not tell peo­ple what you are like’. I said ‘well, peo­ple do not want to hear what you are like, peo­ple do not want to hear you moaning’.

Williams: Are the doc­tors very friend­ly? Do they always greet you in ‘oh yes, have not seen you for a while’ or you know try to build up a con­ver­sa­tion with you, to find out what is the matter?

Smith: I did see a locum last win­ter – and I suf­fer with asth­ma and I had to have antibi­otics – and this locum said to me ‘you old peo­ple are all the same’.

I said ‘What do you mean?’

‘Do not have enough heat in, in the win­ter, that’s what caus­es it.’

I went back, in May I think it was, in the spring any­way and who was there but the same locum and he said ‘you have got an infec­tion again’.

So I said ‘well, tell me now then doc­tor, I said, I do not need heat­ing now, what is caus­ing it now then?’ I said ‘It can­not be a cold house’.

Evans: How did you feel when a GP tells you basi­cal­ly, it is your fault?

Smith: [sigh] Oh, none of us like being told that. I tried to take it on board and think about it, and work out whether they are right or not, and if they are I try and do some­thing about it.

Evans: But you say you do not go to the doc­tors enough…

Smith: Because all they ever do is give you painkillers.… I live on painkillers. I have always main­tained that there is help out there for peo­ple who are drug­gies; there is help out there for peo­ple who are alco­holics and there is help out there for a lot of oth­er things – smok­ing; but there is noth­ing out there that gives you any help or says any­thing about patients who have been addict­ed on pre­scribed drugs. I have asked doc­tors in the past, ‘Are these addictive?’

‘No.’

I had one tablet off the doc­tor and I said ‘I am sure I have put on weight since these tablets’.

‘Oh rub­bish’ he said.

I said ‘I do not think so’.

That passed, I asked anoth­er doc­tor, he was hon­est enough to tell me ‘yes, you put three or four stone on when you take this med­ica­tion’, he said.

Evans: Jean Smith has shown how a break­down in com­mu­ni­ca­tion with a health­care pro­fes­sion­al can lead to a lack of con­fi­dence and in her case a feel­ing of worth­less­ness. The patient’s opin­ion and input may have count­ed for noth­ing in years gone by, but in the broad­er scheme of things, a lot of progress is being made.

Now, the British Pain Soci­ety is a nation­al organ­i­sa­tion. In fact, it is the largest UK vol­un­tary organ­i­sa­tion for health­care pro­fes­sion­als work­ing in pain man­age­ment. So, where does the patien­t’s voice fit into this pro­fes­sion­al organ­i­sa­tion? Well, Dou­glas Small­wood is Chair of its Patient Liai­son Com­mit­tee and Pain Concern’s Chris­tine John­son spoke to him at their vol­un­tary sec­tor sem­i­nar in London.

Dou­glas Small­wood: A num­ber of years ago, the pro­fes­sion­al mem­ber­ship decid­ed that it want­ed to make sure that the voice of the patient was heard with­in the work of the soci­ety, and there­fore a deci­sion was made to set up a patient liai­son com­mit­tee. There is cur­rent­ly approx­i­mate­ly 10 of us, that is sev­en peo­ple with chron­ic pain and three health­care pro­fes­sion­als, so it is a com­mit­tee of both patients and pro­fes­sion­als, which I think is very helpful.

We meet about six times in a year and our objec­tive is to feed into the work of the pro­fes­sion­al mem­ber­ship of the soci­ety. So, for exam­ple, there is a series of spe­cial inter­est groups, deal­ing with dif­fer­ent types of pain that the pro­fes­sion­als join and one of our objec­tives is to make sure that a mem­ber of our com­mit­tee is also present at the meet­ings of the spe­cial inter­est groups, so the views of patients can be built into their work. Because I chair the com­mit­tee, I go to meet­ings of the Coun­cil of the British Pain Soci­ety and can feed-in the patient view there. The one point I would empha­sise is that there is no… we are not here to devel­op the British Pain Soci­ety from a pro­fes­sion­al organ­i­sa­tion, to a patient organ­i­sa­tion. The Pain Soci­ety is a pro­fes­sion­al organ­i­sa­tion and the aim is to make sure that the pro­fes­sion­als have the ben­e­fit of the expe­ri­ence, the knowl­edge and the views of patients.

Pro­fes­sion­al-only organ­i­sa­tions do great things, patient organ­i­sa­tions do great things. I think that the great poten­tial of an organ­i­sa­tion that makes sure the patient voice is there, as well as the pro­fes­sion­al, is that sit­ting togeth­er, in my opin­ion, more can be achieved. So, if you are try­ing to influ­ence gov­ern­ment, in my expe­ri­ence, there is noth­ing more pow­er­ful than to have the patient talk­ing to a gov­ern­ment min­is­ter or the Chief Exec­u­tive of a PCT about their expe­ri­ence of the ser­vice, what they expe­ri­ence, what they need and to what extent the ser­vice match­es up to that. Noth­ing more pow­er­ful than that.

How­ev­er, to move politi­cians and to move man­agers you need more than emo­tion and expe­ri­ence: you need log­ic, you need pro­fes­sion­al under­stand­ing of clin­i­cal mat­ters and you need to put the two togeth­er. So, in my expe­ri­ence, if you are try­ing to change what ser­vices are pro­vid­ed and how they are pro­vid­ed, to make a com­pelling case to the deci­sion mak­ers, you need a mix­ture of the patient voice, com­bined with the knowl­edge, the exper­tise of the professional.

Evans: Dou­glas Small­wood, Chair of the British Pain Soci­ety’s Patient Liai­son Com­mit­tee. Now, the theme of its annu­al Vol­un­tary Sec­tor Sem­i­nar was ‘Path­ways for pain man­age­ment: giv­ing them life’. This refers to the Pain Patient Path­ways project, which evolved from the Chief Med­ical Offi­cers’ report of 2008, high­light­ing chron­ic pain as a clin­i­cal pri­or­i­ty and the need for a con­sen­sus on the best prac­tice care path­ways. So, in 2011, the British Pain Soci­ety, set up a work­ing group to pro­duce pain patient path­way map­ping guidelines.

Dr Mar­tin John­son, is the Roy­al Col­lege of GP’s UK Cham­pi­on in Chron­ic Pain and he is on the Exec­u­tive Com­mit­tee for the Pain Patient Pathways.

Dr Mar­tin John­son: The British Pain Soci­ety has nev­er had any pain path­ways before. They have pub­lished leaflets on var­i­ous aspects, but they realised to defend pain med­i­cine with­in the con­text of UK spend­ing cuts, that they had to devel­op some nation­al path­ways, that any­body in terms of clin­i­cians or com­mis­sion­ers or patients can say that these are the over­all gen­er­al path­ways that we can follow.

There are five dis­ease areas that we are look­ing at in terms of pain. There is going to be a gen­er­al assess­ment prin­ci­ple, that means wher­ev­er a patient presents with chron­ic pain, these are going to be the basic things that you should do. Then there is one on neu­ro­path­ic pain, which will part­ly incor­po­rate the NICE Guide­lines. There’s going to be one on mus­cu­loskele­tal pain, par­tic­u­lar­ly what we call wide­spread pain which is sim­i­lar to fibromyal­gia. There is going to be quite a com­plex one on low back pain or spinal pain in gen­er­al. And, final­ly, there is going to be one on pelvic pain from both males and females.

One of the things to do as well as pub­lish them, there is going to be a whole imple­men­ta­tion strat­e­gy. In fact, we have been sat in a meet­ing this morn­ing with the patient group at the British Pain Soci­ety, talk­ing about how we should try and imple­ment some of these path­ways going through pri­ma­ry care. So it will be a mat­ter of pub­lish­ing books, get­ting guid­ance with­in all the GP mag­a­zines, on radio shows like this, newslet­ters com­ing out from the British Pain Soci­ety or the Roy­al Col­lege, get­ting patients edu­cat­ed on it.

Chris­tine John­son: What are the ben­e­fits of hav­ing patient input, in devel­op­ing the path­ways? How did that work?

Dr John­son: Right from the word go, when Richard Lang­ford our pres­i­dent of the British Pain Soci­ety, set up this path­way group, he decid­ed we should have – right­ly so – patient input, so we get their expe­ri­ence of hav­ing a painful state. I know talk­ing to some of the patients, it has been dif­fi­cult some­times when you start… and they are work­ing as the only patient with­in a diverse group of health­care pro­fes­sion­als. Some­times they can feel left out and I think we have had to change the way we have worked so that they are inclu­sive with­in those path­ways so that we can get their expe­ri­ence. But actu­al­ly, the most impor­tant part is not going to be in the actu­al devel­op­ment part – it is actu­al­ly the get­ting it out there part and mak­ing sure they are used, that is where patient pow­er, I hope, rules okay.

John­son: And if a patient feels that their GP is not fol­low­ing their path­way, what can or should they do?

Dr John­son: That is always an inter­est­ing ques­tion in any path­way. I think the impor­tant thing with path­ways – and this is the expe­ri­ence with oth­er path­ways from oth­er dis­ci­plines like res­pi­ra­to­ry – is that we need to get them local­ly imple­ment­ed. So it will be tak­ing the nation­al frame­work, and say­ing ‘how do we adopt this local­ly?’ Which means you can then use the resources that exist with­in your local area, or make sure that you bid for the resources.

Patients are always indi­vid­u­als and there is going to be instances where the path­way might not be appro­pri­ate. This is going to be, I would hope, for 95 per cent of the patients with those par­tic­u­lar areas it will be some­thing that they can imple­ment. But in terms of the ques­tion you asked me, what we were look­ing at this morn­ing is ways to empow­er patients, so, effec­tive­ly, we give them the infor­ma­tion through a vari­ety of sources, through var­i­ous patient groups. So, if they feel that the infor­ma­tion is not get­ting through to their GP, then they can actu­al­ly ask their GP ‘is there some­thing more appro­pri­ate?’ They will be host­ed on the nation­al­ly avail­able site Map of Med­i­cine, and I believe patients do have access rights to that.

John­son: And in terms of patient edu­ca­tion, how did self-man­age­ment inform the make-up of the path­ways and the development?

Dr John­son: There are sev­er­al key com­po­nents’ that are com­mon to all the path­ways. So, for exam­ple, med­i­cines man­age­ment is one of them, but the oth­er major one is self-man­age­ment. All the work com­ing out of groups such as Co-cre­at­ing Health which is the big pilot hap­pen­ing with self-man­age­ment shows that self-man­age­ment works. And it par­tic­u­lar­ly works when patients are sup­port­ed by oth­er mem­bers of the team.

And I think it is impor­tant for even clin­i­cians to realise that self-man­age­ment is some­thing that can run along­side oth­er forms of man­age­ment. So even if you have got a patient that needs a spinal inter­ven­tion, they still need to self-man­age as well. So to the extent we may well have to devel­op a spe­cif­ic path­way to give more infor­ma­tion about self-man­age­ment. We have got peo­ple involved, such as Pete Moore from the Pain Toolk­it, which means that patients should hope­ful­ly get infor­ma­tion about that.

John­son: And back to the edu­ca­tion, how do you hope this will change pain edu­ca­tion for health professionals?

Dr John­son: That does link in with the imple­men­ta­tion strat­e­gy. I am hop­ing that it will give the nec­es­sary infor­ma­tion, because the path­ways are, I hope, a very good bal­ance between both evi­dence-based med­i­cine and a prag­mat­ic approach where the evi­dence doesn’t exist. So it will give a frame­work for health­care pro­fes­sion­als to man­age chron­ic pain which is one of the biggest issues that we deal with in medicine.

Evans: Dr Mar­tin John­son talk­ing to Pain Concern’s Chris­tine John­son at the British Pain Society’s Patient Liai­son Com­mit­tee Annu­al Vol­un­tary Seminar.

Here is Dou­glas Small­wood, Chair of the Patient Liai­son Com­mit­tee once again:

Small­wood: My per­son­al expe­ri­ence as a per­son with a long term con­di­tion and some pain, is that I real­ly want the ser­vices to be joined up, so that I see the right pro­fes­sion­al at the right time and in a con­ve­nient loca­tion and that is not my expe­ri­ence of the ser­vice. I think the path­ways will assist with all those points.

There was a sem­i­nal report two or three years ago – was­n’t there? – from the Depart­ment of Health chaired by Lord Darzi, and he had defined qual­i­ty as hav­ing three com­po­nents – qual­i­ty of care: one was clin­i­cal out­comes; one was patent expe­ri­ence and the third was patient safe­ty. So a high qual­i­ty ser­vice achieves those three things.

I think if we can map out what the care that a per­son with a con­di­tion expe­ri­enc­ing pain should receive, if we can map that out and get agree­ment to it, then we can start to hold clin­i­cians, the sys­tem, man­agers to account for deliv­er­ing it. When that isn’t mapped out, it makes it rather more dif­fi­cult for peo­ple to hold to account.

Evans: Now, Dou­glas Small­wood talked about his wish as a patient for a joined-up service.

Mark Ritchie is a GP in Swansea and he has a spe­cial inter­est in pain management.

Mark Ritchie: In Swansea we have very recent­ly set up a pain ser­vice which is real­ly in its infan­cy at the moment, but it has been tri­aled for almost a year now. And what we have done, is we have tak­en meth­ods of exam­i­na­tion on patients and meth­ods on treat­ing patients from pain ser­vices all around the coun­try. We then com­bined that into a ser­vice which we are now putting for­ward. A part of this is what we call a mul­ti­dis­ci­pli­nary assess­ment, but it is more than just a mul­ti­dis­ci­pli­nary assess­ment, it leads onto mul­ti­dis­ci­pli­nary man­age­ment and an over­all holis­tic approach. So, mul­ti­dis­ci­pli­nary assess­ment means we are not only assess­ing the patient by a doc­tor on his own, we are using oth­er dis­ci­plines. In this par­tic­u­lar case we are using a phys­io­ther­a­pist and we are using a nurse trained in pain man­age­ment and to a less­er or greater extent we use a psy­chol­o­gist as well.

So what do we do? Well, the patient comes before each of us in turn, there might be two of us togeth­er if our exam­i­na­tions over­lap. They come to each of us in turn, in a round­about way, so you might have three patients simul­ta­ne­ous­ly, one for each of us, and then rotat­ing. As a doc­tor or a physi­cian, I first need to con­firm my diag­no­sis or the diag­no­sis that has been put in front of me. I need to make sure that there aren’t any what we call ‘red flags’ – things that mean this per­son could need imme­di­ate surgery or hos­pi­tal­i­sa­tion, or maybe under­ly­ing things that could point towards can­cer, things like that, so my pri­ma­ry task is a med­ical one initially.

Once I have got through that lit­tle bit, which real­ly is the first five or 10 min­utes, we then move onto actu­al­ly ques­tion­ing the patient fur­ther: ask them how long this has been going on for; look­ing at the modal­i­ties of pain; the types of pain they have been feel­ing; then exam­in­ing them and then the whole way through giv­ing them feedback.

So, hav­ing done that, they will then move onto the phys­io­ther­a­pist. A phys­io­ther­a­pist is very much a mus­cu­loskele­tal type assess­ment, but in this case, it is not just ‘can you move your arms and legs?’, it is func­tion­al­ly based. So, the phys­io­ther­a­pist will do things like get­ting them to walk back­wards and for­wards over a 10-metre strip for instance, just to see how fast they can do this task. Maybe lift­ing a ball, and plac­ing it on top of a shelf up and down, up and down, to see how they func­tion – are they able to do basic tasks? Because man­age­ment here, is not nec­es­sar­i­ly going to be cure, it is going to be man­ag­ing both their pain and their life, so they can get the best out of both.

Then they will move onto the nurse. The nurse will do a more psy­choso­cial assess­ment, where they will look at their liv­ing sit­u­a­tion: their spouse, their rela­tion­ship with oth­ers, things like sex life comes into it and so on. All of this is then not­ed down as well.

Once that is fin­ished, the three of us get togeth­er as a team for a few min­utes, to dis­cuss what we have found. And then we bring the patient in as the fourth mem­ber of the team. So, the patient is then drawn into that assess­ment, we dis­cuss what we have found and ask the patien­t’s com­ments on what we have found and we then devel­op a plan based on the patien­t’s needs and what we have seen as his needs, as well as what he or she sees as needs. And then from there we can move for­ward into treatment.

Evans: So, hav­ing assessed the per­sons’ needs and abil­i­ty, what hap­pens next?

Ritchie: Well, first­ly, can I roll back a sec­ond before they are even being assessed. We have a triage sys­tem when the let­ters come in first from the dif­fer­ent refer­rers. And at that stage a num­ber of them will go straight back to the gen­er­al prac­ti­tion­er. Maybe they haven’t tried cer­tain basic med­ica­tions, maybe we have sim­ply had a query from a GP as to where and how to pro­ceed… we have got this far, where do we go?

We don’t wipe them out of the ser­vice, we mere­ly say could you try this for three months, and then, if not, send them into us. So that is the first part. Once they have actu­al­ly been through the assess­ment team – they have been invit­ed along to the assess­ment team, before they even arrive – we start to include them in this team work. So, we send them a num­ber of ques­tion­naires, we send them a cat­a­stro­phiz­ing scale, anx­i­ety and depres­sion score and a brief pain inven­to­ry. So, we send them these three ques­tion­naires, so that they can actu­al­ly put down on the paper where they feel they are. One of these scor­ers has got a lit­tle dia­gram of the human body on it, so they can actu­al­ly draw on it, and show them where their pain is. So they have already involved at that stage.

Now they have been through this assess­ment process, where they have again been involved and now we come out of it – so where do we go from here? Some of them sim­ply need advice, and they will get that advice, we will send that advice back to their gen­er­al prac­ti­tion­er. We might imme­di­ate­ly change a drug, if there is some­thing obvi­ous that needs doing and again, back to the GP. Some of them will need that and oth­er things. So, a clas­sic exam­ple, a minor change in med­ica­tion, a refer­ral to podi­a­try because the per­son is flat-foot­ed and needs orthotics and a refer­ral onto what we call a pain man­age­ment programme.

So not a cura­tive ser­vice. If their pain was cur­able, they prob­a­bly would not be com­ing to see us.

Evans: Should patients be ask­ing for this service?

Ritchie: Absolute­ly! I think if they are at the lim­it of what their gen­er­al prac­ti­tion­er is capa­ble of man­ag­ing, then I cer­tain­ly think that they should have the right to request an ongo­ing refer­ral. But I think they also have to bal­ance that with the real­i­sa­tion that their GPs and their doc­tors are pret­ty well trained, and they need to move into that ser­vice when it is appro­pri­ate, not just on day one. So, this real­ly is for peo­ple where we have passed the point of nat­ur­al heal­ing, nor­mal heal­ing, and there is still an ongo­ing problem.

And those are the patients we need to refer in. But at that stage, the soon­er the bet­ter, because peo­ple who are not yet off work, peo­ple who are still work­ing but maybe mov­ing towards a sit­u­a­tion where they might end up being off work, those are the patients we need to get soon­er, rather than lat­er – that in-between phase, if I can put it that way.

Smith: I went to a pain con­trol clin­ic in Bron­llys which was an off­shoot from Saint Thomas’ in Lon­don, and I found it excel­lent.

Evans: Well, just to remind you that Air­ing Pain fea­tured that res­i­den­tial pain clin­ic in Bron­llys in mid Wales (men­tioned there by Jean Smith) last year. And you can down­load all edi­tions of Air­ing Pain – and that par­tic­u­lar pro­gramme is num­ber five – from our web­site at painconcern.org.uk.

Smith: You were assigned a phys­io­ther­a­pist each patient and they worked specif­i­cal­ly to you and your prob­lems. We agreed to dis­agree in the end. She want­ed me to do cer­tain things and I said No’. And I said ‘It is my back, not yours’. I said ‘I will do what I can’. So we still stayed friends! [laughs]

Williams: How were you after the course then?

Smith: Good for a while.

Williams: Did you have to keep up any exercises?

Smith: Well you were sup­posed to yes, did I?… Liv­ing on my own I need that incen­tive. I find with a lot of things these days, I need that lit­tle push, that incen­tive to do things. If I am in a class or with oth­er peo­ple, I do them fine, but on my own I tend not to do them.

Evans: Well is that not the same for most of us? That things like pain man­age­ment pro­grammes and I have done the expert patient pro­gramme… [Smith: I done that as well last year.] …and you are fired up imme­di­ate­ly, but the fol­low-up is the most impor­tant thing.

Smith: Well, I went to that last year and I found that very good. They had a relax­ation CD, and we were giv­en a book at the end of the course. And that relax­ation CD is one of the best that I have ever heard.

Evans: Jean Smith. Lat­er in the year I will be tak­ing part in Arthri­tis Care’s Chal­leng­ing Pain Pro­gramme. That is for peo­ple with all sorts of chron­ic pain con­di­tions not just for those with arthri­tis. I will report back to you on Air­ing Pain how I get on. But It does seem that self-man­age­ment is a key ele­ment to liv­ing with chron­ic pain.

Kevin Ged­des, is the Direc­tor of Self-man­age­ment with the Long Term Con­di­tions Alliance in Scotland.

Kevin Ged­des: Self-man­age­ment means dif­fer­ent things to dif­fer­ent peo­ple, but in essence it real­ly is strate­gies and approach­es that peo­ple take to man­ag­ing their own con­di­tion, either them­selves, or in part­ner­ship with their fam­i­lies, car­ers or with health pro­fes­sion­als. Dif­fer­ent ideas that peo­ple have about look­ing after them­selves and get­ting involved in their own con­di­tion, real­ly. Allow­ing them to get on and real­ly enjoy the things that they want to do in their life [laughs] with­out focus­ing too much on the clin­i­cal aspects of their con­di­tion, really.

A lot of the work that we do is across dif­fer­ent sec­tors: across the vol­un­tary sec­tor; across the NHS; across local author­i­ties. But real­ly at the heart of that there is always the expe­ri­ence of the peo­ple who live with long term con­di­tions, or care for peo­ple in their fam­i­ly that live with long term conditions.

All the ideas and the approach­es that we have been involved with so far, have come from peo­ple liv­ing with long term con­di­tions them­selves, who know best how to man­age their con­di­tion and know best how to react to their body and know best who to ask for for sup­port when they need that. So, real­ly, I guess that the mes­sage is the we real­ly want peo­ple to get more involved and tell us what ideas are miss­ing and what ideas would work best for them.

The key mes­sage is that peo­ple should get involved in the man­age­ment of their own con­di­tion and real­ly step up a lit­tle bit and see what they can do for them­selves. It is not about being alone in that process, there is lots and lots of sup­port that peo­ple can access: in the com­mu­ni­ty, in the vol­un­tary sec­tor, in the health ser­vice and from the local author­i­ty, that can help them to live bet­ter lives. And I guess to help peo­ple feel in con­trol of their con­di­tions, so that their con­di­tion is not in con­trol of them.

Evans: When I phoned you up last week and said that your name had been passed on to me and I should speak to you…

Smith: Yes…

Evans: I know and from when I arrived this morn­ing, that you were pet­ri­fied of speak­ing in front of a micro­phone, which is why you have brought your very good friend Jeff along with you to help you out…

Smith: And work colleague…

Evans: And work colleague.

Smith: Yes.

Evans: But you did say to me on the phone, ‘well I need to be putting some­thing back anyway’.

Smith: I used to help run a sup­port group. I also worked vol­un­tar­i­ly for about 10 years, in the men­tal health net­work, in the end [laughs].

Williams: Does help­ing in a sup­port role, or vol­un­tary sec­tor or what­ev­er it is, does that help you?

Smith: Yes, I sup­pose to give some­thing back to the com­mu­ni­ty, to give some­thing back to oth­er peo­ple who have been in sim­i­lar posi­tions. And you think you are the only one. You do not realise that there are oth­er peo­ple out there who suf­fer the same, or even more than what you do.

Evans: We are com­ing to the end of this edi­tion of Air­ing Pain, so there is just time to remind you, that if you want to put a ques­tion to our pan­el of experts, or just make a com­ment about these pro­grammes, then please do via our blog, mes­sage board, email, face­book, twit­ter, or pen and paper. All the con­tact details are at our web­site which is: painconcern.org.uk.

I will leave you with Jean and her friend Jeff Williams to recall what hap­pened when she became involved in teach­ing young dis­abled chil­dren to swim.

Smith: I did not feel any self-worth at the time and there was one inci­dent where there were two swim­ming teach­ers there and they could not get this lit­tle girl to go in the pool. I sat and I talked to her and we played on the steps in the pool and then she came round the pool with me. It was such an achieve­ment because the teach­ers had failed. [laughs] It was great. I did it for a few years.

Williams: A num­ber of times you said you did not have any self-worth, did the chil­dren help with this?

Smith: Yes, because chil­dren don’t judge you, adults do.

Williams: How do you know the chil­dren took to you, what did the chil­dren used to do?

Smith: [laughs] Tell me all their secrets!

Williams: How did they tell you their secrets?

Smith: Their moth­ers and fathers would come in and I would say ‘well I know quite a bit about you!’ [laughs] The kids will tell you all their secrets.

Williams: How did chil­dren used to take you?

Smith: They used to come over. Once I went into the pool, they would all come over and we would all tod­dle off to the Jacuzzi and have our dai­ly con-flab! [laughs]

Williams: That made you feel a lot better?

Smith: Oh, it was bril­liant!


Con­trib­u­tors:

  • Dou­glas Small­wood, British Pain Society
  • Dr Mark Ritchie, GP, Swansea
  • Kevin Ged­des, Direc­tor of Self Man­age­ment with the Long Term Con­di­tions Alliance in Scotland
  • Dr Mar­tin John­son – Roy­al Col­lege of Gen­er­al Prac­tion­ers’ UK Cham­pi­on in chron­ic pain; on the exec­u­tive com­mit­tee for the Pain Patient Pathways
  • Jean Smith, patient.

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