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Transcript – Programme 34: Ankylosing Spondylitis; the Patient Perspective

Liv­ing with anky­los­ing spondyli­tis and pso­ri­a­sis, plus, lis­ten­ing to the patient per­spec­tive and edu­cat­ing health professionals

To lis­ten to this pro­gramme, please click here.

In this pro­gramme we look at anky­los­ing spondyli­tis (AS), a form of arthri­tis affect­ing the spine. Paul Evans speaks to Iain Mac­Don­ald and Tom Down­ie of the Edin­burgh branch of the Nation­al Anky­los­ing Spondyli­tis Soci­ety, about their role in sup­port­ing peo­ple with the con­di­tion. Paul also talks to Jan­ice John­son of PSALV (Pso­ri­a­sis Scot­land Arthri­tis Link Vol­un­teers) about psoriasis.

Issues cov­ered in this pro­gramme include: Anky­los­ing spondyli­tis, patient voice, edu­cat­ing health pro­fes­sion­als, edu­ca­tion, inflam­ma­to­ry arthri­tis, joint pain, young peo­ple, school, pol­i­cy, hydrother­a­py, exer­cise, hered­i­tary, phys­io­ther­a­py, stretch­ing, trig­gers, mis­in­for­ma­tion, der­ma­tol­ogy and psoriasis.

We also inter­view speak­ers from the Annu­al Sci­en­tif­ic Meet­ing of the British Pain Soci­ety. Pain Concern’s Sue Clay­ton gives a patient per­spec­tive to health­care pro­fes­sion­als, while Emma Brig­gs of the British Pain Society’s Pain Edu­ca­tion Spe­cial Inter­est Group explains the impor­tance of improv­ing the pain edu­ca­tion of health­care professionals.

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

Tom Down­ie: I went to the Ide­al Home Exhi­bi­tion a few years ago and the man sell­ing the beds, he says, ‘excuse me, sir, you’ve got anky­los­ing spondyli­tis, would you like to buy a bed’.

Jan­ice John­son: Some GPs are fan­tas­tic and oth­ers don’t know an awful lot because their train­ing in dermatology’s been cut and some of them only get about 2 weeks der­ma­tol­ogy train­ing in 6 years.

Emma Brig­gs: We did include the vets in our sur­vey and the vets on aver­age did have a high­er pain edu­ca­tion in terms of the num­ber of hours, com­pared to those being edu­cat­ed on the human health­care side of things.

Tom Down­ie: I know it’s noth­ing, but he knew just by look­ing at you. I mean that was just a man sell­ing beds.

Paul Evans: More about GP train­ing and top tips on med­ical diag­no­sis from a bed sales­man lat­er. Now anky­los­ing spondyli­tis, or AS, is a con­di­tion where some, or all of the joints of the spine fuse togeth­er. It’s one of the three most com­mon forms of inflam­ma­to­ry arthri­tis along with rheuma­toid and pso­ri­at­ic arthri­tis. They’re sep­a­rate con­di­tions, but what each has in com­mon is that the body’s immune sys­tem is wrong­ly trig­gered to attack itself, caus­ing pain, stiff­ness, dam­aged joints and, if left untreat­ed, pos­si­ble disability.

It affects around 200,000 peo­ple in the UK and I met Iain Mac­Don­ald and Tom Down­ie, Sec­re­tary and Trea­sur­er of the Edin­burgh branch of the Nation­al Anky­los­ing Spondyli­tis Soci­ety. Tom was a teenag­er when the dis­ease took hold.

Down­ie: I was at board­ing school and we’d be play­ing foot­ball or some­thing and the next day I just couldn’t move out of bed, just seized up. I just couldn’t move and the nurse would come and put some Deep Heat or some­thing on and I’d be fine a few hours lat­er. That went on through my school years, but as I got into my 20s I’d get the Deep Heat on but it’d still be sore for 3 or 4 days and I’d be out of action for weeks, just not being able to move. I was get­ting all the pain killers and things and, although it would maybe take some of the pain away, you just couldn’t move, you were that stiff. I nev­er got diag­nosed till I was maybe 30 years old and by then I was away stooped over, I couldn’t see where I was going, life was just hell and you get depressed and things like that. Then I got my hips replaced when I was 35 and that made a big dif­fer­ence, con­stant physio and things, so now I can walk about, any dis­tance I need a walk­ing stick, but life’s alright.

Evans: Work­ing out the maths, it took 15 years to be diag­nosed. Why was that?

Down­ie: At 15 or 16 at school you were seen as ‘Tom you want to get off doing some­thing, he just wants to stay in bed’. When I start­ed work­ing I would go to work at 18–19, you would have to have a week of here and a week off there, you just couldn’t do things. And when you’re that age you don’t want to go to the hos­pi­tal, you don’t want to go to the doc­tors, but even­tu­al­ly when you do, you just get diag­nosed lots of dif­fer­ent things: its stiff­ness, its juve­nile arthri­tis and I’d be in my late 20s when actu­al­ly some­body says, ‘I think it’s this, anky­los­ing spondyli­tis’, and I had a fur­ther investigation.

Evans: If you were a 15 year old now going through it would it still take 15 years?

Down­ie: Well I’ve got a son who’s 22 and when he was 13 he went through the same sort of thing, he was told he had some type of juve­nile arthri­tis and he would have days off school and things like that and he had a car­ry on and he, unlike me, liked school so it was quite a prob­lem for him. With me already hav­ing it, we went to the doc­tor, got diag­nosed fair­ly quick and got offered phys­io­ther­a­py, so with­in 2 years or some­thing he was get­ting offered phys­io­ther­a­py, but I wasn’t get­ting offered phys­io­ther­a­py for 15 years.

Evans: So has he had a suc­cess­ful diag­no­sis because of your knowl­edge or has it moved on?

Down­ie: I think a bit of both. At first it was because of my knowl­edge, but the group we go to on a Mon­day, you do hear and you see younger peo­ple com­ing now, not very often, but you see them, they seem to get diag­nosed in their twen­ties now and it would take maybe me 10 years before I had it. So they do seem to diag­nose it a lot quicker.

Evans: As an organ­i­sa­tion, the Nation­al Anky­los­ing Spondyli­tis Soci­ety, what are you doing to help peo­ple get bet­ter treat­ment or more information?

Iain Mac­Don­ald: Tom and myself and anoth­er col­league, Camp­bell Barr, have been going along to the Scot­tish Par­lia­ment for the last 3 or 4 years to var­i­ous Com­mit­tees to try and get pub­lic­i­ty, such that ulti­mate­ly the infor­ma­tion gets spread. The mem­bers of the Soci­ety get 3 prin­ci­pal things: one is inter­face with fel­low suf­fer­ers so that they get infor­ma­tion on poten­tial prob­lems and per­haps how to cure them; the hydrother­a­py ses­sions that we’re lucky enough to have in Edin­burgh and gym­na­si­um ses­sions. So we get an exer­cise regime that will help at least keep the prob­lem at bay if not nec­es­sar­i­ly cure it.

Down­ie: Also, I think that if peo­ple know about the Group and they know where you can get the infor­ma­tion, so some­body like me that got hip replace­ments in their thir­ties and I’ve got a son who’s 22 – with him know­ing about anky­los­ing spondyli­tis – because even some­thing as sim­ple as pos­ture, you find out all that infor­ma­tion, so you can avoid prob­lems like hav­ing to get hip replace­ments… know­ing the right physio, the right exer­cise, the right med­ica­tion, where you can stay in work longer and things like that.

Evans: Talk­ing about your son hav­ing it as well, is it hereditary?

Down­ie: Yes, I don’t know the offi­cial sta­tis­tics but just going by me I’ve got 3 sis­ters, one of them has got anky­los­ing spondyli­tis and anoth­er one’s got pso­ri­a­sis and there’s a con­nec­tion between pso­ri­a­sis and anky­los­ing spondyli­tis. My son’s got it, to see him you wouldn’t notice, he looks fit, but at least with me know­ing these things I can get on to him when I see him watch­ing TV slouch­ing, I can get on at him to sit up and it can avoid prob­lems in your 50s and 60s. There’s some­thing that you can do now.

Mac­Don­ald: I can con­firm that it is hered­i­tary, my father had it and I have four sis­ters, one of whom has also got it. We’re keep­ing our fin­gers crossed, I’ve got three kids and we have no sign of them actu­al­ly hav­ing the prob­lem yet. So, as Tom says, I’m 2 out of 5 got it so we’re keep­ing our fin­gers crossed about our kids.

Evans: What advice would you have for some­body who’s just been diag­nosed with anky­los­ing spondylitis?

Mac­Don­ald: I would ask them to find a local NASS branch, and there are many through­out the coun­try, and gain the ben­e­fits that I’ve per­son­al­ly gained from it: the speak­ing to peo­ple who also have the prob­lem, find­ing out what their prob­lems are and per­haps help­ing you get­ting into the hydrother­a­py ses­sions, the gym ses­sions. In my per­son­al cir­cum­stance, Camp­bell Barr, who I men­tioned before, actu­al­ly had phys­io­ther­a­pists organ­ised to do mea­sure­ments – there’s a sys­tem called a ‘Bath sys­tem’ [Bath Anky­los­ing Spondyli­tis Dis­ease Activ­i­ty Index (BASDAI)] – that actu­al­ly mea­sures your degree of stiff­ness and pain. There’s a 3 sheet set of sta­tis­tics that peo­ple can mea­sure how bad­ly you are or oth­er­wise. It’s thanks to this mea­sure­ment regime that that then got referred to the rheuma­tol­o­gists. I gained huge ben­e­fit per­son­al­ly through going along to the NASS organ­i­sa­tion branch in Edinburgh.

Evans: Tom, on a day-to-day basis, what advice would you give some­body who’s just been diag­nosed with anky­los­ing spondylitis?

Down­ie: The key is keep mov­ing. As Ian says, on the Mon­day night we’ve got half an hour in the hydrother­a­py, they’re trained phys­io­ther­a­pists, they know what they’re doing. So that makes a dif­fer­ence, you get that hydrother­a­py on the Mon­day, then through in the gym, 45 min­utes of light stretch­ing, you go at your own pace. And once you get into that rou­tine of doing that, I just feel that it just sets you up for the rest of the week. Even a Jacuzzi, before you go in the Jacuzzi you might get 25 steps with­out a seat but once you’ve been in that Jacuzzi you can maybe walk 100 with­out a seat. Move­ment is the key.

Evans: Tom Down­ie and Iain Mac­Don­ald. And you can find more infor­ma­tion about anky­los­ing spondyli­tis includ­ing details of the local branch­es of the Nation­al Anky­los­ing Spondyli­tis Soci­ety from their web­site, which is That’s

Now, I men­tioned the link between AS and pso­ri­a­sis, or pso­ri­at­ic arthri­tis. Jan­ice John­son helps run a small Scot­tish char­i­ty, PSALV. It stands for Pso­ri­a­sis Scot­land Arthri­tis Link Volunteers.

Jan­ice John­son: I myself have pso­ri­at­ic arthri­tis which I’ve had since 1974, diag­nosed in 1974, unfor­tu­nate­ly wasn’t giv­en good treat­ment back in the 70s and 80s and there are now a lot of new­er med­ica­tions avail­able. There’s no cure, its sim­i­lar to rheuma­toid arthri­tis in some ways in as much as it’s an inflam­ma­to­ry arthri­tis but back in the 70s and for 25 years after I was diag­nosed, I wasn’t giv­en any­thing oth­er than non-steroidals and I should have been giv­en sec­ond line med­ica­tions. So for 25 years I had lit­tle flares and that left me with quite a lot of dam­age which is not reversible oth­er than with surgery. It’s sim­i­lar to rheuma­toid in as much as if you get in quick­ly with the diag­no­sis of this you can treat it, you can’t cure it but you can treat it. Osteo’s more dif­fi­cult actu­al­ly because it’s wear and tear, but with the inflam­ma­to­ry types if you can get in ear­ly you can do more, so that’s basi­cal­ly what hap­pened to me. But I do have a lot of pain and a lot of stiff­ness and I can’t walk very far now because I’ve got a lot of ten­don dam­age – ankles, feet, knees – so my mobility’s not good.

Evans: Now a lot of peo­ple might know about pso­ri­a­sis but not know the link between pso­ri­a­sis and arthritis.

John­son: Pso­ri­a­sis is an over­growth of skin cells but there’s also an inflam­ma­to­ry response and you don’t have to have a lot of skin pso­ri­a­sis, which is red scaly patch­es, to have prob­lems with your joints. This is part of the prob­lem, you might have just a tiny bit of skin pso­ri­a­sis, just a tiny lit­tle bit and then devel­op sore fin­gers and toes which is one of the most sort of clas­sic ones and unfor­tu­nate­ly GPs, like a lot of things, are not ter­ri­bly well trained in spot­ting this and the link is the inflam­ma­tion, the inflam­ma­tion for some rea­son in about 1 in 5 peo­ple with any skin pso­ri­a­sis, not nec­es­sar­i­ly exten­sive, it doesn’t have to be, you know, you don’t have to be cov­ered in pso­ri­a­sis to get this, devel­op some prob­lems with their joints. And again it’s very rare there might be one fin­ger and you might be in a wheel­chair. So we’re not try­ing to fright­en any­one but it is a pro­gres­sive thing so you do need to treat it ear­ly. Some GPs are fan­tas­tic and oth­ers don’t know an awful lot because their train­ing in dermatology’s been cut and some get about 2 weeks der­ma­tol­ogy in 6 years, which is ridiculous.

Evans: So what should peo­ple look out for?

John­son: Well any­one with diag­nosed pso­ri­a­sis should be aware of this – not to fright­en any­one – but if you get a swollen puffy fin­ger or toes or actu­al­ly pain in your heel – the heel’s anoth­er com­mon place – the back of your heel, sort of ten­donitis, you should go and ask your doc­tor if you can get a refer­ral to der­ma­tol­ogy to see what’s going on, with­out ter­ri­fy­ing any­one because it might be some­thing else. Don’t get ter­ri­fied and think, ‘oh my God I’ve got pso­ri­a­sis ‘, just, you know, keep an eye on it.

Evans: I’m glad I’m speak­ing to you because I have a lit­tle bit of pso­ri­a­sis and I will keep an eye on it.

John­son: And you’re ter­ri­fied! Bear in mind most peo­ple with skin pso­ri­a­sis don’t get prob­lems, as I say, it’s about 1 in 5.

Evans: Well you’ve been rum­mag­ing through your bag and I’ve got exact­ly what I need which is a leaflet from… ‘This Is Pso­ri­a­sis’. I must read this and thank you very much indeed.

John­son: Thank you very much, thank you.

Evans: Jan­ice John­son from PSALV, that’s Pso­ri­a­sis Scot­land Arthri­tis Link Vol­un­teers. She and the pre­vi­ous speak­ers made ref­er­ence to the ade­qua­cy of train­ing for health pro­fes­sion­als. Sue Clay­ton has been involved with Pain Con­cern for many years. Hav­ing had chron­ic pain for over 30 years, she was invit­ed to give the patient per­spec­tive to health pro­fes­sion­als at the 2011 Annu­al Sci­en­tif­ic Meet­ing of the British Pain Society.

Clay­ton: The mod­el where some­one has an acute ill­ness they are treat­ed and then dis­charged is the sort of con­di­tion gov­ern­ments are inter­est­ed in because they get a path­way, they get an out­come that they can mea­sure. Chron­ic pain’s a very dif­fer­ent sort of con­di­tion, it’s a long-term con­di­tion, peo­ple have prob­a­bly got it for the rest of their lives, unfor­tu­nate­ly, and I think it calls for a dif­fer­ent sort of rela­tion­ship with the clin­i­cians the patient is work­ing with, in a way a much more car­ing rela­tion­ship, and I think one of the hard­est things that patients like me are fac­ing at the moment is the way that med­ical ser­vices are chang­ing – it’s that patients like me des­per­ate­ly need con­ti­nu­ity of care with their med­ical advis­ers and that is what is being lost in the health ser­vice at the moment.

It doesn’t make sense for me to have to go into my gen­er­al prac­ti­tion­ers and be pre­pared to see any­body of the 5 GPs who work there and have to repeat my sto­ry end­less­ly so that they under­stand where I’m com­ing from. They have doubts usu­al­ly because of some of the drugs which I’m on, whether this is suit­able, where­as my much lament­ed, splen­did GP who’s recent­ly retired, because she’d known me for 20 years, we’d built up a rela­tion­ship and she trust­ed me. I trust­ed her to give me the best avail­able care that she could man­age but she also trust­ed me, she knew that I didn’t swing the lead, she knew that I took my drugs respon­si­bly, she knew that I put effort into self-man­age­ment, she knew that if I came to her and said ‘things have got much worse. I help need with a par­tic­u­lar­ly dif­fi­cult peri­od, a bad flare-up…’ that that was gen­uine, I wasn’t mak­ing it up. And she only knew that, because she’d known me for a long time and you know, known me over a peri­od of time. And that’s being lost and that makes it very dif­fi­cult for GPs at the coal face to work with peo­ple with long-term con­di­tions like chron­ic pain because they’re com­plex, pain is sub­jec­tive, it’s invis­i­ble. In a sense they have to take an awful lot on trust of what their patients are say­ing and how can they have that trust if they haven’t built up a rela­tion­ship with the knowl­edge of their patients. So at the moment it’s very, very dif­fi­cult I think.

There needs to be a huge amount more train­ing going into clin­i­cians deal­ing with chron­ic pain, both right from the under­grad­u­ate lev­el, right up to spe­cial­ists… to under­stand that patients real­ly strug­gle to cope with their lives and that a lot of them are real­ly doing their best, but that often life is extreme­ly dif­fi­cult and also pain fluc­tu­ates so much, you may go along fine for 6 months and then wake up and for some unknown rea­son, you have a ter­ri­ble flare-up, that’s what hap­pened to me 3 weeks ago, noth­ing I could put my hand on. Peo­ple say to me all the time, ‘oh do you know what hap­pened?’ And I say ‘no.’ And that makes it very dif­fi­cult for the patient because they don’t know what to avoid, they don’t know how to man­age better.

If there was a trig­ger, I know that if I do some­thing real­ly stu­pid, if I dig the gar­den, of course I’ll have back pain but it can hap­pen with­out any warn­ing at all. And this makes it so dif­fi­cult to explain to clin­i­cians and for them to believe you, because per­haps they’ve seen you out and about and you look per­fect­ly alright. I mean most peo­ple see­ing me would think I look per­fect­ly nor­mal, they don’t know that sit­ting here today I’ve got sear­ing, burn­ing pain from my waist to my toes – it just isn’t visible.

How do you judge some­body like that, it’s a very dif­fi­cult sit­u­a­tion both for doc­tors and for patients and so I think there real­ly has to be a mod­el where patients have con­ti­nu­ity of care, in a rela­tion­ship where they trust the doc­tors to actu­al­ly believe what they say, they accept it and be pre­pared to per­haps put the bar­ri­ers down a lit­tle bit, treat them as human beings who are capa­ble adults who are try­ing to lead their lives as well as pos­si­ble. Nobody wants to be in this sit­u­a­tion; they’ve had it forced upon them. I would give any­thing not to be liv­ing like this but I have to. It’s very easy to judge peo­ple with chron­ic pain and judge them very unkind­ly and that hap­pens with both the gen­er­al pub­lic and from clin­i­cians and oth­er health pro­fes­sion­als at times… to take things on face val­ue with­out actu­al­ly talk­ing to patients and find­ing out what’s going on underneath.

Evans: Sue Clay­ton, who spoke at the 2011 British Pain Soci­ety Annu­al Sci­en­tif­ic Meet­ing. In the fol­low­ing year’s meet­ing I spoke to Emma Brig­gs, she teach­es at the Flo­rence Nightin­gale School of Nurs­ing and Mid­wifery at Kings Col­lege Lon­don. She’s also Chair of the British Pain Society’s Pain Edu­ca­tion Spe­cial Inter­est Group. Their aim is to enhance the edu­ca­tion of qual­i­fied health pro­fes­sion­als and the patient edu­ca­tion that they pro­vide. So why should health­care pro­fes­sion­als who’ve been through years of train­ing need this?

Emma Brig­gs: Very good ques­tion. We recent­ly con­duct­ed a sur­vey that we pub­lished with­in the Euro­pean Jour­nal of Pain which looked at the amount of edu­ca­tion that was pro­vid­ed to our under­grad­u­ates and that looked at the edu­ca­tion that was giv­en to den­tists, to nurs­es, doc­tors, mid­wives, phys­io­ther­a­pists and phar­ma­cists and the num­ber of hours of edu­ca­tion that they receive is actu­al­ly very low: the aver­age hours for a mid­wife was 6 hours, in the whole of their cur­ricu­lum; nurs­es receive an aver­age of 10 hours; doc­tors an aver­age of 13 and the over­all aver­age was 12 hours of education.

Evans: And you’re talk­ing about edu­ca­tion, about pain issues?

Brig­gs: About pain, yes and con­sid­er­ing it’s the rea­son that peo­ple seek health care and the amount of pain that peo­ple expe­ri­ence that’s a rel­a­tive­ly low num­ber in their cur­ricu­lum. So it’s less than 1% of their cur­ricu­lum that actu­al­ly includes pain man­age­ment, so we are try­ing to increase the num­ber of hours of edu­ca­tion devot­ed to pain man­age­ment but also how it’s taught with­in our uni­ver­si­ties with­in the UK.

Evans: You missed that one cat­e­go­ry in your list and that’s vets.

Brig­gs: Vets – yes, now we did include the vets with­in our sur­vey and we repli­cat­ed this sur­vey from Cana­da and there were five vet schools with­in the UK and unfor­tu­nate­ly we only got two respon­dents. But the vets on aver­age did have a high­er num­ber of pain edu­ca­tion in terms of the num­ber of hours com­pared to those being edu­cat­ed on the human health­care side of things. How­ev­er, we can’t, you know, it was only two schools. But it is a sur­pris­ing sta­tis­tic that they have a high­er num­ber of hours in their cur­ricu­lum, but that comes down from their reg­u­la­tors. The reg­u­la­tors of the vet­eri­nary under­grad­u­ate pro­grammes stip­u­late that pain should be in there and then the qual­i­ty assur­ance body that fol­lows that up to make sure that edu­ca­tion is being deliv­ered well – they say that pain should be in there so they kind of attack it from both sides, where­as, as part of the sur­vey we looked at the health­care reg­u­la­tors, such as the Nurs­ing and Mid­wifery Coun­cil, the Gen­er­al Med­i­cine Coun­cil, whether they had made those stip­u­la­tions – and in some cas­es they had but in many cas­es they hadn’t, you know, so we real­ly need to tack­le things from the Reg­u­la­tor so that they encour­age and stip­u­late that pain should be in the curriculum.

Evans: It’s hot­ly rumoured that there’s an event this sum­mer called the Olympics.

Brig­gs: Yes.

Evans: You’ve man­aged to get it into one of your titles as well.

Brig­gs: We have indeed and our work­shop today was called Citius Altius For­tius and launch­ing our Olympic cam­paign for pain edu­ca­tion. And that was real­ly about say­ing, there’s been some great devel­op­ments about pain edu­ca­tion for health­care pro­fes­sion­als for patients and the pub­lic, but actu­al­ly we need more and we need to be high­er, faster and stronger on this and we real­ly need to push the agen­da you know, and one of my lines with­in the work­shop was, ‘you haven’t got a £2 bil­lion devel­op­ment fund nei­ther have we got a one-eyed mas­cot’, but there’s much that we can do col­lec­tive­ly to real­ly move this agen­da for­ward. And we’ve been work­ing with a num­ber of peo­ple and from that work­shop some great ideas have come out and we will be sort of rolling those out to kind of improve pain edu­ca­tion over the com­ing months.

Evans: What sort of ideas?

Brig­gs: Well we have the inter-pro­fes­sion­al under­grad­u­ate cur­ricu­lum doc­u­ment com­ing out lat­er on in the year, so that’s a work­ing par­ty that’s being chaired by Dr Nick All­cock and we are look­ing at pro­duc­ing a doc­u­ment which real­ly helps peo­ple put pain edu­ca­tion into their cur­ricu­lum. Because peo­ple can face a num­ber of bar­ri­ers one fel­low aca­d­e­m­ic said to me ‘but my Head of Depart­ment has said, I’ve got a num­ber of pen­guins on my ice­berg which one do you want me to push off in order to fit pain in the curriculum?’

But we want to change these sorts of atti­tudes to say, you know we don’t need to push off any pen­guins, we need to make sure that each pen­guin knows how to man­age pain but you know they’ve got the skills to do that. So this doc­u­ment is a real sort of prac­ti­cal… how to help the per­son cham­pi­on pain man­age­ment with­in their uni­ver­si­ty, how do you inte­grate it, how do you try and get health­care pro­fes­sion­als learn­ing and work­ing togeth­er, because the real­i­ty is in clin­i­cal prac­tice that nurs­es, phar­ma­cists, doc­tors all need to work togeth­er to help the patient, but at the moment our sur­vey has shown that they don’t; they don’t learn togeth­er, they learn sep­a­rate­ly on their cours­es and we need to change that. So this doc­u­ment is very much about say­ing how can you get the health­care pro­fes­sion­als learn­ing with, about and from each oth­er, so that when they qual­i­fy they are able to work real­ly well inter-pro­fes­sion­al­ly and for the best inter­ests of the patient really.

Evans: Tom, do you find that doc­tors find dif­fi­cul­ty in diag­nos­ing your condition?

Down­ie: Well years ago, yes, but younger med­ical stu­dents, younger doc­tors, they can look at you and some of them see you walk­ing into the room and they think, ‘anky­los­ing spondyli­tis’, you know. I went to the Ide­al Home Exhi­bi­tion a few years ago and the man sell­ing the beds, he says, ‘excuse me, sir, you’ve got anky­los­ing spondyli­tis, would you like to buy a bed?’ You know what I mean?!

So, I know it’s noth­ing, but you know what I’m say­ing – he knew just by look­ing at you, and that was just a man sell­ing beds. And I think as well, the younger stu­dents, they can see, but that can be a dan­ger as well because some­body like Iain, although his neck’s stiffer and that, he’s not stooped over like me. But just because you’re not stooped over you can still have anky­los­ing spondylitis.

Evans: But you were telling me ear­li­er that you get involved in train­ing doc­tors and even consultants.

Down­ie: Well yeah, it’s just called ‘Exem­plar Patient Pro­gramme’ and its 3rd and 4th year med­ical stu­dents and we spent an hour-an hour and a half in the room with them talk­ing to you, and they want to know how you were first diag­nosed and how you feel your GP in par­tic­u­lar dealt with your prob­lem and how you feel it could be improved and if they become a doc­tor in 5 years’ time and some­body walks in with a sore back, how could it be improved.

Evans: So in short, you go along to the hos­pi­tal as an exem­plar patient; a group of doc­tors, young and old, come in and they have to work out what’s wrong with you.

Down­ie: Well yeah, as I said, you go down there, there’s maybe four or five oth­er peo­ple like me and we get put into five rooms and there’ll be four or five groups of stu­dents and their job is to try and guess what’s wrong with that per­son. And there’ll be me with anky­los­ing spondyli­tis, some­body with rheuma­toid arthri­tis, some­body with oth­er forms. And I have noticed over the years of doing this, they seem more informed than the doc­tors were 20 years ago, put it that way.

Evans: So, of the con­sul­tants, the stu­dent doc­tors and the dou­ble bed sales­men, who gets the best training?

Down­ie: [Laughs] I think the young doc­tors, the 4th year stu­dents seem to be more with it now than ever before, in my opin­ion anyway.

Evans: The big thing about pain edu­ca­tion is that all the infor­ma­tion and the help is there but we just don’t know it’s there.

Brig­gs: Yes, yeah. It’s very true actu­al­ly. Dorothy Helme here is our link with the Patient Liai­son Com­mit­tee and is a co-opt­ed mem­ber of the Edu­ca­tion SIG [Spe­cial Inter­est Group] and she was reflect­ing on that point this morn­ing when she was telling her jour­ney from when she first start­ed expe­ri­enc­ing pain to her diag­no­sis. She was say­ing, you know, ‘I am a nurse by back­ground, but I am a pain suf­fer­er and I did not know where to look and there was not near­ly enough infor­ma­tion out there for me, couldn’t find the infor­ma­tion, I hadn’t even found the infor­ma­tion from the British Pain Society’.

So again there’s a lot to be done there in terms of aware­ness and help­ing peo­ple find the appro­pri­ate and well-informed infor­ma­tion resources for them; and sup­port groups and spe­cial­ist sup­port groups as well.

Evans: Emma Brig­gs, Chair of the British Pain Society’s Pain Edu­ca­tion Spe­cial Inter­est Group.

Now, don’t for­get that you can still down­load all the pre­vi­ous edi­tions of Air­ing Pain from and you can obtain CD copies from Pain Con­cern too. If you would like to put a ques­tion to our pan­el of experts or make a com­ment about these pro­grammes then please do so via our blog, mes­sage board, e‑mail Face­book, Twit­ter and of course pen and paper. All the con­tact details are at our web­site, once again

Our usu­al words of cau­tion are that whilst we believe that the infor­ma­tion and 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 or well­be­ing. He or she is the only per­son who knows you and your cir­cum­stances and there­fore the appro­pri­ate action to take on your behalf. And that goes for infor­ma­tion and guid­ance you will find from oth­er sources, par­tic­u­lar­ly the inter­net. Emma Brig­gs to close the programme.

Brig­gs: The inter­net is a fan­tas­tic resource but it can also con­tain some very unre­li­able infor­ma­tion; and in fact Dorothy was reflect­ing on her expe­ri­ences of using the inter­net and find­ing very neg­a­tive infor­ma­tion on the inter­net, which was not help­ful for her as she was search­ing for some help for her facial pain con­di­tion. And it’s very dif­fi­cult to judge, I mean, the stu­dents that I work with they have a whole pro­gramme on how to use the inter­net effec­tive­ly to actu­al­ly make those judge­ments as to who is it writ­ten by, when was it last updat­ed, what was the pur­pose, was there any adver­tis­ing around with it that might be influ­enc­ing it. It’s very, very hard to actu­al­ly judge whether this is a reli­able source of infor­ma­tion and actu­al­ly whether the per­son who’s writ­ten it is actu­al­ly a real doc­tor, nurse etc. So it is a dif­fi­cult judge­ment to make, and of course you type your key terms into some inter­net search­es and you may get sites which actu­al­ly have paid to be top of the agen­da and so there­fore they might have some cer­tain bias­es as well.


  • Iain Mac­Don­ald and Tom Down­ie, Edin­burgh branch of the Nation­al Anky­los­ing Spondyli­tis Society
  • Jan­ice John­son, PSALV (Pso­ri­a­sis Scot­land Arthri­tis Link Volunteers)
  • Sue Clay­ton, Pain Concern
  • Emma Brig­gs, Lec­tur­er at the Flo­rence Nightin­gale School of Nurs­ing and Mid­wifery, Kings Col­lege Lon­don and Chair of the British Pain Society’s Pain Edu­ca­tion Spe­cial Inter­est Group.