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Transcript – Programme 22: Pain Support Groups and Facial Expressions

What facial expres­sions in mice can tell us about pain, man­ag­ing pain in demen­tia patients, and find­ing hope in a pain sup­port group

To lis­ten to this pro­gramme, please click here.

Peo­ple with men­tal ill­ness and chron­ic pain often find it dif­fi­cult to access the treat­ment they need. Spe­cial­ist nurse Valerie Con­way talks about her work in pro­vid­ing car­ers with the skills to bet­ter look after peo­ple with Alzheimer’s and demen­tia who have pain.

Mea­sur­ing pain through facial expres­sions is one way in which health pro­fes­sion­als can become more aware of the needs of those who are unable to ver­balise their expe­ri­ence. Pro­fes­sor Jef­frey Mogil tells Air­ing Pain about his work mea­sur­ing pain respons­es in the facial expres­sions of mice and how this could help in under­stand­ing human pain and in find­ing new drug treat­ments for pain.

We also hear from Sue Clay­ton about how shar­ing her expe­ri­ences and get­ting pain man­age­ment advice at a pio­neer­ing chron­ic pain sup­port group in the eight­ies helped her put her life back togeth­er after post-sur­gi­cal pain.

Issues cov­ered in this pro­gramme include: Med­ical research, demen­tia, sup­port groups, Alzheimer’s dis­ease, mea­sur­ing pain, post-sur­gi­cal pain, learn­ing dis­abil­i­ties, observ­ing behav­iour, facial expres­sion, body lan­guage, non­ver­bal com­mu­ni­ca­tion, com­mu­ni­cat­ing pain, edu­cat­ing car­ers, brain sig­nals, empa­thet­ic pain and mutu­al understanding.

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 is made pos­si­ble by Pain Concern’s sup­port­ers and friends. More infor­ma­tion on fundrais­ing efforts is avail­able on our Just Giv­ing page and that’s at

Sue Clay­ton: I was being told by the medics that I was mad, bad and sad, basi­cal­ly – main­ly mad. That I didn’t have pain – it was all in my head – and it com­plete­ly dev­as­tat­ed my life. I couldn’t work, look after fam­i­ly, I des­per­ate­ly need­ed some­one else who under­stood me.

Valerie Con­way: If Eng­lish isn’t their first lan­guage, it doesn’t mat­ter – it’s about recog­nis­ing a change in behav­iours and being able to iden­ti­fy they might be in pain so what are we going to do about it?

Pro­fes­sor Jef­frey Mogil: If you put one of the mice in jail in pain and the oth­er one isn’t, and if all three mice are female and cage-mates, then the three female mice will spend more time with the mouse in pain than the mouse that isn’t in pain.

Evans: [laughs] …we will come back to the mice lat­er. They could well be rel­e­vant to a pilot project being run by the Com­mu­ni­ty Chron­ic Pain Ser­vices in East Kent, whose Lead Clin­i­cian is Con­sul­tant Nurse (Chron­ic Pain) Val Conway.

Con­way: For patients with learn­ing dif­fi­cul­ties the chal­lenges are that they can­not always express them­selves in a way that is obvi­ous that they are in pain. Oth­er chal­lenges are that some of the car­ers who are look­ing after them are inex­pe­ri­enced, may lack train­ing and may not know what to look for as far as pain man­age­ment is con­cerned. One of the areas that we’re look­ing into is to devel­op a train­ing pack­age in order to help car­ers look after clients in their res­i­dences. We’re cur­rent­ly look­ing at a tool called Dis­DAT (Dis­abil­i­ty Dis­tress Assess­ment Tool), which is a pain tool specif­i­cal­ly for peo­ple with either learn­ing dif­fi­cul­ties or demen­tia. Hope­ful­ly when this tool is rolled out it, it will improve pain man­age­ment for this group.

Evans: You men­tioned com­mu­ni­ca­tion skills with peo­ple with learn­ing dis­abil­i­ties, with demen­tia, but how do you deal with that, how does it show itself?

Con­way: It’s going back to the basics. What we’re look­ing at is to see if we can get the car­ers to assess their client group when they come to the home and have a base­line of what is nor­mal for that per­son. For instance, if it is nor­mal for a per­son to rock in the chair or gri­mace, what hap­pens when they are in pain is that behav­iour will change. It is recog­nis­ing the change from the nor­mal for what is nor­mal for that per­son. And that is what we find is miss­ing, car­ers may not know the change in behav­iour is some­thing to look for that they are in pain.

Evans: How do you notice that?

Con­way: This is what the edu­ca­tion pack­age is about. We are going to get the car­ers to come along and my expe­ri­enced col­leagues and myself are going to help them iden­ti­fy pain. We’re going to do some role play; we’re going to do some group work, so they can iden­ti­fy base­lines for these peo­ple so they will notice the changes actu­al­ly mean some­thing. That way we hope that the com­mu­ni­ca­tion between the car­er and GPs/healthcare pro­fes­sion­al will be improved to get the right treat­ment for that client group.

Evans: Is there a lack of knowl­edge on pain man­age­ment with­in the care system?

Con­way: Yes, main­ly because most of the care sys­tem is not with­in the NHS (Nation­al Health Ser­vice) umbrel­la, it has gone out to pri­vate care homes. And a lot of the staff are not trained nurs­es or phys­ios. They go into the pro­fes­sion because they want to care for peo­ple but often the train­ing is not avail­able with­in the spe­cialised areas.

Evans: My mem­o­ry of my father in a nurs­ing home was that most of his car­ers were from Euro­pean coun­tries, non-British coun­tries – actu­al­ly, they were very good indeed, but how would you train some­body in that posi­tion who spends more time with a patient than any­body else real­ly, how would you train them?

Con­way: Well this is what we looked at, when we were design­ing the edu­ca­tion pack­age. Cer­tain­ly in Kent where I worked a lot of the car­ers were young and Eng­lish is not their first lan­guage, there­fore, the tools we need to design must be sim­ple, but ones they recog­nise and under­stand. Again, if we are using the same tool day in day out repeat­ing it, they will learn the dif­fer­ent words and behav­iours they are deal­ing with.

Evans: So in many ways you are pick­ing up more on the body lan­guage than the spo­ken language?

Con­way: Well yes… well it is look­ing at the base­line. Look­ing at what is nor­mal – nor­mal in invert­ed com­mas for that client group – and they can recog­nise that. It doesn’t mat­ter if Eng­lish is not their [first] lan­guage it is about recog­nis­ing a change in behav­iours and being able to iden­ti­fy that this might be they are in pain and there­fore what are we going to do about it.

Evans: Val Con­way, Lead Clin­i­cian for Com­mu­ni­ty Chron­ic Pain Ser­vices in east Kent. Now one obvi­ous form of body lan­guage is of course facial expres­sion. If you stamp on my toe, I will prob­a­bly gri­mace. I know that is not earth shat­ter­ing research, but Jeff Mogil who is the EP Tay­lor Pro­fes­sor of Pain Stud­ies at the McGilll Uni­ver­si­ty in Mon­tre­al, Cana­da is inter­est­ed in how facial expres­sion could be used as a mea­sure of pain, but his sub­jects aren’t peo­ple but mice.

Mogil: Facial expres­sions of all the emo­tions are rather stereo­typed – peo­ple from dif­fer­ent cul­tures and dif­fer­ent ages reli­ably show the same move­ment of mus­cles in the face when they are angry, or hap­py, fear­ful or enraged or, as it turns out, in pain. How­ev­er, this is not what I’m inter­est­ed in. That has been going on a long time. I was inter­est­ed to see if this works in ani­mals, as well as peo­ple. And of course Dar­win wrote an entire book on the sub­ject in 1857, The Expres­sion of Emo­tion in Man and Ani­mals, where he argued that any emo­tion­al state that you can see through a facial expres­sion in humans, you should be able to see in all mam­mals and amaz­ing­ly no one had ever tried that. No one had ever looked to see if there is a gri­mace sim­ply put, in any oth­er species oth­er than people.

So we tried it in the mouse and recent­ly we tried it in the rat and it works and of course they do gri­mace. Inter­est­ing­ly, it works some­times and not oth­er times, so gen­er­al­ly speak­ing we find that pain that lasts any­where from about 10 min­utes to two days you will see a gri­mace in animals.

Evans: So, you being able to tell if a rat is in pain or hap­py or what­ev­er, how is that going to affect me?

Mogil: Right, in the pain field there has been increas­ing frus­tra­tion with what we call our poor record of trans­la­tion. What that means is we have all this basic sci­ence knowl­edge, we know all these new mol­e­cules that are involved in pain and new brain areas and we real­ly think we have a good han­dle of the phys­i­ol­o­gy of pain.

The prob­lem is, if you look in the clin­ic, and see ‘well what’s new?’ You realise not much. You come to the con­clu­sion that most of the drugs used to treat pain at the present time are either drugs that are very much like aspirin, which is from the wil­low bark ulti­mate­ly. They knew about wil­low bark two thou­sand years ago. The drugs that are used for severe pain – the nar­cotics, the opi­oids are… well those are ulti­mate­ly the same drug as opi­um. Again, the opi­um pop­py was known two thou­sand years ago.

Real­ly there is very lit­tle that is new in the treat­ment of pain. Peo­ple have put these two facts togeth­er that we have all these new mol­e­cules, but none of them have led to any­thing new in the clin­ic. This has led some to believe that the prob­lem might be that the ani­mal mod­els we are using to give our­selves con­fi­dence that these drugs would work in peo­ple just aren’t doing the trick.

Mogil: There is a lot of cur­rent work on try­ing to make new ani­mal mod­els or refine the ani­mal mod­els so they will be more pre­dic­tive, so if the drugs work against the mod­el in the mouse or rat, we can have more con­fi­dence that if the same drug is giv­en to peo­ple it would actu­al­ly kill pain.

What can we do to make bet­ter ani­mal mod­els is being worked on, so we recent­ly pub­lished we can use facial expres­sion as a new mea­sure in ani­mal exper­i­ments. Before we would make some manip­u­la­tion, a drug, say, then we would poke the animal’s foot with thin nylon fil­a­ments and we would find that after the injury they would respond to thin­ner fil­a­ments, then if you gave them a drug they would respond only to thick­er fil­a­ments. Again we pre­tend­ed that that was pain, but it isn’t pain, it was a reflex with­draw­al to stimulus.

And this is not what patients com­plain of – they do not say, ‘I with­draw my hand from thin­ner fil­a­ments than before’ or ‘when I used to put my hand on a hot stove it hurt, but, boy, now after my injury it real­ly hurts.’ This is not what patients are pre­sent­ing with at the doctor’s this is not the clin­i­cal prob­lem. The clin­i­cal prob­lem is spon­ta­neous pain – ‘my arm hurts. You do not need to touch it, it just hurts.’

And our prob­lem in rats and mice is that we have not had very many mea­sures, if any at all, of spon­ta­neous pain. We can poke the mouse or the rat, exert mechan­i­cal pres­sure, but we have a hard time know­ing if an ani­mal is in pain. This is where facial expres­sion comes in as they are com­mon­ly used in non­ver­bal humans.

Obvi­ous­ly in nor­mal adults, you do a pain study and you ask how much does it hurt and they will give you a num­ber and you have your mea­sure. In babies, for exam­ple, or in dement­ed old­er adults you can’t ask them and get any answer at all or get an answer you can trust; so, for ten or twen­ty years peo­ple have been using facial expres­sion to come up with a num­ber for how much pain that baby is in. We fig­ured that mea­sur­ing spon­ta­neous pain you don’t need to touch them, you just need to video their face and then find a way of scor­ing it. If it’s good enough for babies, it’s good enough for mice and we could see, if it works, we could use it as a mea­sure of spon­ta­neous pain that is dif­fer­ent from the cur­rent mea­sures. And so far it has been work­ing out real­ly nice­ly in fact.

Evans: In evo­lu­tion­ary terms is that the pur­pose of facial expression?

Mogil: That’s a real­ly inter­est­ing ques­tion. It’s been argued in humans that the pur­pose of facial expres­sion – actu­al­ly, the per­son who argued this first, Aman­da Williams, who was at this meet­ing I just came from – it’s been argued in peo­ple that the pur­pose of the gri­mace is a com­mu­ni­ca­tion strat­e­gy designed to solic­it help or for sym­pa­thy. It may be the same in mice, but we are not sure.

We have one piece of evi­dence, that we find very inter­est­ing, that if you put two mice behind jail bars at the end of a cor­ri­dor and then you have a third mouse that can go where it wants – it can stay away from both or go and vis­it one or go vis­it the oth­er – and you put one of the mice in the jail in pain and the oth­er one isn’t. The pur­pose of the exper­i­ment is to see where the free mouse spends its time. We find that gen­er­al­ly they do not care much. They gen­er­al­ly spend a bit of time with one, a bit of time with the oth­er, with one excep­tion: if all three mice are female and if they are cage mates – if they all come from the same cage so that they are famil­iar with each oth­er – then the free female mouse will spend more time with the mouse in pain than the mouse that isn’t in pain, sug­gest­ing that she was going over to try and help. But how did she know they were in pain?

We expect it’s at least par­tial­ly because of facial expres­sion and this might be the oper­a­tion of a com­mu­ni­ca­tion strat­e­gy that’s effec­tive in the mouse. Then on the oth­er hand, it has been argued as well that things are there and they are ulti­mate­ly reflex­es and through evo­lu­tion pri­mates and even­tu­al­ly humans will learn to use these reflex­es for oth­er pur­pos­es. It is pos­si­ble that facial expres­sion in ani­mals has noth­ing to do with com­mu­ni­ca­tion, but because it was there and we got smart enough we fig­ured a way to use it for com­mu­ni­ca­tion. So I am not sure yet, but that’s actu­al­ly a real­ly good question.

Evans: I remem­ber from my basic psy­chol­o­gy days at uni­ver­si­ty an exper­i­ment on clas­si­cal con­di­tion­ing. Half our class smiled and the oth­er half of the class looked dis­in­ter­est­ed and grumpy and the teacher would auto­mat­i­cal­ly grav­i­tate towards the smil­ing half is that the same sort of thing?

Mogil: Yes, it may very well be the same thing with one excep­tion though: one can imag­ine that because of the exper­i­ment the pro­fes­sor is spend­ing more if his or her atten­tion on the smil­ing class because the smil­ing is more com­fort­ing per­haps and look­ing at smil­ing peo­ple increas­es his or her mood. But our mouse spend­ing time with the mouse in pain is vol­un­tar­i­ly approach­ing some­thing that may very well even be dan­ger­ous. The mouse doesn’t know whether what hap­pened to the mouse in the jail could hap­pen to the free mouse too. It doesn’t know, so it could actu­al­ly be doing some­thing dan­ger­ous. So it is all the more impres­sive that it occurs at all.

Evans: Are you bring­ing altru­ism into the equa­tion though and aren’t humans sup­posed to be the only species to have altruism?

Mogil: They are and they are also the only species that are sup­posed to have empa­thy, but we actu­al­ly showed in anoth­er series of exper­i­ments a few years ago, that mice are quite capa­ble of at least the ear­li­est forms of empa­thy as well. Do you want to hear about this?

Evans: I do. [laughs]

Mogil: Ah ok [laughs] …So essen­tial­ly what we found, is that com­pared to mice that were test­ed alone in a Plex­i­glas obser­va­tion cylin­der by them­selves – which is how we and every­one else usu­al­ly does it – if you now instead of test­ing one mouse per cylin­der, test two mice per cylin­der and you com­pare the sit­u­a­tion where one mouse is in pain and the oth­er isn’t to a sit­u­a­tion where both mice are in pain.

Now remem­ber, in the con­di­tion where both mice are in pain, not only are they in pain but both are also look­ing at anoth­er mouse in pain. And the ques­tion is, does that make any dif­fer­ence? It turns out that it does. That both mice will have more pain than if they are test­ed alone or test­ed in the pres­ence of a mouse that wasn’t in pain. But only, again, if they are cage-mates, if they are strangers there’s no effect of this social obser­va­tion. After about a year of con­trolled exper­i­ments that the review­ers made us do a year lat­er we con­vinced our­selves and the review­ers that this rep­re­sent­ed empathy.

Now, your lis­ten­ers may find that odd. That’s because people’s under­stand­ing of the word ‘empa­thy’ and the real def­i­n­i­tion of ‘empa­thy’ are not the same. When we say ‘empa­thy’ most peo­ple think of sym­pa­thy, but sym­pa­thy isn’t empa­thy. In fact, empa­thy breaks down into four or five dif­fer­ent things the bot­tom lay­er is some­thing what we call ‘emo­tion­al contagion’.

Emo­tion­al con­ta­gion is in fact some­thing every­one is famil­iar with. The two great exam­ples of that are one baby in a nurs­ery cry­ing and set­ting off all the oth­ers – that’s emo­tion­al con­ta­gion. The oth­er clas­sic exam­ple is a con­ta­gious yawn. If some­one yawns, it is more like­ly than chance that peo­ple near them will also yawn. They are not yawn­ing because they are bored or tired, they are yawn­ing because they saw the first per­son yawn. And that is, of course, empa­thy. Your state is being manip­u­lat­ed by the state of some­one you are observing.

And so we think our demon­stra­tion of increased pain sen­si­tiv­i­ty while observ­ing a cage-mate in pain fits exact­ly into this same cat­e­go­ry. Human empa­thy has been shown to mod­u­late pain and also to lead to acti­va­tion in the same brain regions that are acti­vat­ed when there is real pain, so observ­ing pain in some­one else will light up the areas of the brain as if you were get­ting the pain yourself.

Evans: I may be say­ing the unfor­give­able here, but it seems as if peo­ple with chron­ic pain shouldn’t actu­al­ly mix in crowds of oth­er peo­ple expe­ri­enc­ing chron­ic pain.

Mogil: Yes, you’re right, the impli­ca­tion of this work is that pain in some sense is con­ta­gious. Now that is just a hypoth­e­sis and that would obvi­ous­ly need to be shown. I’ve been rack­ing my brain try­ing to think of a way to prove that. I can only think of one exper­i­ment that would work, except I don’t think it would be prac­ti­cal or that I would ever get per­mis­sion to do it. But if you did an exper­i­ment where you looked at sol­diers in basic train­ing, who are liv­ing in a bar­racks togeth­er and no-one iso­lat­ed them­selves from any­one else, I would be will­ing to bet that if some­one there got a headache or migraine, that you would see oth­ers in 24 hours would get migraines over and above chance lev­els. But I think that’s right, that’s the impli­ca­tion but hasn’t been proven yet.

Evans: So where do sup­port groups fit into this?

Mogil: Well right, it sug­gests that sup­port groups may be doing harm in addi­tion to doing good. It’s very impor­tant to point out that on bal­ance I’m per­fect­ly con­vinced that they do more good than harm.

Evans: And of course in sup­port groups peo­ple aren’t going just to be in pain. They aren’t sit­ting down being mis­er­able and moan­ing. They are going to give sup­port to oth­er peo­ple and to expe­ri­ence how to get on.

Mogil: Yes of course and one needs to remem­ber that chron­ic pain patients aren’t in pain con­stant­ly – they have attacks of pain and that hap­pens at cer­tain fre­quen­cies and the like­li­hood that dur­ing a sup­port meet­ing that a whole bunch of peo­ple active­ly moan­ing about a pain cri­sis is pret­ty low.

Evans: Jeff Mogil of McGill Uni­ver­si­ty in Mon­tre­al, Canada.


Clay­ton: I’m not sug­gest­ing that patients sit over long cups of cof­fee and switch hor­ror sto­ries. Some­times that is ther­a­peu­tic, but I think we can get much more out of our rela­tion­ship with each oth­er than that.

Evans: This is Sue Clay­ton who has had neu­ro­path­ic pain fol­low­ing surgery to relieve her back pain in the ear­ly 1980s.

Clay­ton: I des­per­ate­ly need­ed some­one else who under­stood me. I was being told by the medics that I was mad, bad and sad, basi­cal­ly – main­ly mad. That I didn’t have pain, it was all in my head. I was in my mid-thir­ties, had a young fam­i­ly, I had every­thing to live for, I did not need a chron­ic ill­ness or con­di­tion. I didn’t know any­one else who had a con­di­tion where they didn’t get bet­ter, peo­ple usu­al­ly have an acute con­di­tion and they’re treat­ed and the prob­lem is solved. In your mid-thir­ties you don’t tend to know peo­ple who have ongo­ing con­di­tions. It com­plete­ly dev­as­tat­ed my life: I couldn’t work; I couldn’t look after my fam­i­ly; I wor­ried my chil­dren would need to go into care because I was bedrid­den. But above all I was expe­ri­enc­ing ter­ri­ble pain, back pain.

I’d had surgery, I’d had a sec­ond surgery, been told ‘yes, the oper­a­tion was a suc­cess, so it is your fault you are not get­ting bet­ter’. Which is an incred­i­bly dam­ag­ing thing to do to some­body because you are left with no sup­port, because what your, in my case, orthopaedic spe­cial­ist tells your GP affects your GP’s atti­tude. And pre­sum­ably they were say­ing ‘this lady has been oper­at­ed on, prob­lem solved. What is the problem?’

But I had unremit­ting pain, which absolute­ly destroyed me and I was being giv­en noth­ing that even touched the pain and I was just con­sumed by it. I couldn’t eat, sleep, I was depressed. I was wor­ried sil­ly. My poor hus­band had to take charge of look­ing after me and the fam­i­ly while try­ing to keep a roof over our heads by hang­ing on to his job which was quite high pressured.

So I felt total­ly iso­lat­ed. And I real­ly thought ‘am I going mad?’ But I knew I wasn’t. I knew the pain was real, but I was being told oth­er­wise, which destroys your whole cen­tral being, so I was des­per­ate to find out what was going on. These were the days before the inter­net, so it was incred­i­bly dif­fi­cult to access med­ical lit­er­a­ture, so it was real­ly hard to try and research what was hap­pen­ing to me.

I hap­pened to see an arti­cle in my local news­pa­per on a work-injured nurse who had dam­aged her back lift­ing a corpse at work. She stopped work­ing as a result, couldn’t get help because of her prob­lems, so she end­ed up going to the Wal­ton hos­pi­tal in Liv­er­pool, which then back in the 80s was the only pain man­age­ment pro­gramme in the coun­try. It helped her tremen­dous­ly. She learnt a lot about man­ag­ing her pain and she’d come back to Whit­stable, which is quite near­by to where I lived in Can­ter­bury. And she decid­ed to start a self-help group to help others.

She held meet­ings to which I start­ed going. So for the first time I met peo­ple who under­stood what I was going through – oth­er patients. We shared stores and infor­ma­tion. We gave each oth­er sup­port, we had speak­ers from the med­ical pro­fes­sion and allied pro­fes­sion­als like med­ical herbal­ists, acupunc­tur­ists, Alexan­der tech­nique, phys­io­ther­a­pists. It became a com­plete life­line, so through her I learnt what pain man­age­ment was about, what books I could read and how I could teach myself, so it grew very, very slow­ly from there.

Evans: So this is back in the 80s?

Clay­ton: Yes, this is back in the 80s, around 1985. So it was a life­line. If I hadn’t found that I real­ly don’t know what I would have done because my life had fall­en apart and there was no sup­port from the med­ical pro­fes­sion at that stage. I was so angry at what had hap­pened to me. I thought it was dis­grace­ful that peo­ple could be left in such a seri­ous con­di­tion, with their lives com­plete­ly falling apart. The anger impelled me to get involved. I thought, ‘this isn’t right. Something’s got to change. We need to sup­port these patients. We need to build links with the med­ical pro­fes­sion. We’ve got to make things better.’

Evans: You were instru­men­tal in start­ing Pain Con­cern which was then called Self-Help in Pain. I am cer­tain­ly grate­ful to Pain Con­cern for the man­age­ment of my con­di­tion. How do you think peo­ple should use self-help groups like this?

Clay­ton: I think it’s giv­en peo­ple some­where they can go to be under­stood and receive sup­port and infor­ma­tion. For many patients, it has giv­en them con­tact with oth­er patients who have chron­ic pain con­di­tions them­selves – maybe dif­fer­ent con­di­tions – but there is an affin­i­ty there which patients respond to amaz­ing­ly which I cer­tain­ly found valuable.

Pain Con­cern has done a fan­tas­tic job over the years to build rela­tion­ships with the med­ical pro­fes­sion, because I think the way for­ward is for us to work togeth­er. Some clin­i­cians have been fan­tas­tic and have seen the val­ue and want­ed to be part of patient groups. They have want­ed to make that part­ner­ship much eas­i­er and that can only be good for oth­er patients.

Orig­i­nal­ly SHiP and then Pain Con­cern just issued infor­ma­tion about chron­ic pain which is usu­al­ly what peo­ple want most of all, but of course the helpline has issued sup­port and infor­ma­tion to peo­ple for many years to peo­ple who have nowhere else to go, couldn’t find any­one else who under­stood them, nowhere to get advice. Pain clin­ics were per­haps few and far between. Pain Con­cern has been able to put peo­ple in touch with pain clin­ics and tell peo­ple what pain clin­ics can offer. I think it’s just been a ral­ly­ing point, real­ly as much as any­thing, to give a voice to patients who oth­er­wise wouldn’t get heard at all.

Evans: So Pain Con­cern is here to help all of us, so don’t for­get you can put a ques­tion to our pan­el of experts or a com­ment to our blog, mes­sage board, Face­book, Twit­ter, via email or of course pen and paper, all con­tact details you need and a link to down­load Air­ing Pain are on our web­site and that’s at

Now, before we go I will just remind you that while we believe the opin­ions on Air­ing Pain are accu­rate and sound based on the best judge­ments 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 knows the appro­pri­ate action to take on your behalf.

Now return­ing to Sue Clay­ton to end this edi­tion of Air­ing Pain – she may have dif­fer­ent con­di­tions to you me or any of the 7.8 mil­lion of us in the UK who live with chron­ic pain, but her expe­ri­ences in deal­ing with it will be famil­iar to all of us:

Clay­ton: Absolute­ly, that’s why we under­stand each oth­er. And that’s why there is this affin­i­ty, it’s impos­si­ble to have that with some­one else who doesn’t have chron­ic pain. It’s a bond­ing expe­ri­ence which has giv­en us strength above all else to feel we can change things and make a dif­fer­ence. Ser­vices will be improved and we hope that pol­i­cy mak­ers will under­stand the scale of the prob­lem and the dif­fi­cul­ty in address­ing the problem.

And I think what needs to hap­pen now is through polit­i­cal pres­sure where the patient sup­port groups are work­ing with clin­i­cians to present a unit­ed voice to pol­i­cy mak­ers, per­haps we can devel­op much bet­ter inte­grat­ed, com­pre­hen­sive ser­vices staffed by clin­i­cians who have got ade­quate train­ing and clear path­ways, so patients under­stand what will hap­pen when they are referred, what it will mean, who will see them, why they will see them and what sup­port is ongoing.

I think patients need both good offi­cial med­ical ser­vices and they also need the oppor­tu­ni­ty to meet with oth­er patients if pos­si­ble or at least to com­mu­ni­cate with oth­er patients. This of course has changed enor­mous­ly with the inter­net, patient forums, email has com­plete­ly rev­o­lu­tionised the way patients can coop­er­ate and talk to each oth­er which is a huge bonus. And I think actu­al­ly this has the poten­tial to take a great load of the health ser­vice. Patients can raise the pro­file and make a dif­fer­ence to the way the ser­vices are pro­vid­ed so they are suit­able for the peo­ple who are going to be using them.


  • Valerie Con­way, Clin­i­cal Lead, NHS Com­mu­ni­ty Ser­vices Chron­ic Pain, Kent
  • Pro­fes­sor Jef­frey Mogil, Pro­fes­sor of Pain Stud­ies, McGill University
  • Sue Clay­ton, past mem­ber of BPS Patient Liaison.


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