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Transcript — Airing Pain 121: Living with Persistent Pain in Wales

Dis­cussing the future of chron­ic pain ser­vices across Wales 

To lis­ten to the pro­gramme, please click here.

This edi­tion of Air­ing Pain has been par­tial­ly fund­ed by an edu­ca­tion­al grant from Grunen­thal Lim­it­ed, donat­ed for this purpose. 

In April 2019, the Min­is­ter for Health and Social Ser­vices in Wales launched the guid­ance doc­u­ment ‘Liv­ing with Per­sis­tent Pain in Wales.’ Lat­er, in Decem­ber, the Chron­ic Pain Pol­i­cy Coali­tion brought togeth­er some of Wales’s lead­ing pain experts at the home of the Welsh Par­lia­ment (or Senedd Cym­ru) in Cardiff, at an event chaired by Neil Bet­teridge, co-chair of the Chron­ic Pain Pol­i­cy Coali­tion, a group which brings togeth­er a wide range of chron­ic pain stake­hold­ers includ­ing pro­fes­sion­al bod­ies, patient organ­i­sa­tions, par­lia­men­tar­i­ans and indus­try rep­re­sen­ta­tives from across the UK. 

This edi­tion of Air­ing Pain was record­ed live at the event, where clin­i­cians, aca­d­e­mics, pol­i­cy-mak­ers and peo­ple liv­ing with pain came togeth­er to dis­cuss both the new doc­u­ment and the future of chron­ic pain ser­vices across the region. 

With thanks to the Chron­ic Pain Pol­i­cy Coali­tion, the Welsh Gov­ern­ment and the con­fer­ence organ­is­ers for facil­i­tat­ing the record­ing of this event. 

Issues cov­ered in this pro­gramme include: Arthri­tis, avail­abil­i­ty of pain ser­vices, edu­ca­tion, equal­i­ty, exer­cise, fatigue, fibromyal­gia, chron­ic pri­ma­ry pain, fund­ing of pain ser­vices, GP, opi­oids, osteoarthri­tis, phys­io­ther­a­py, pol­i­cy, refer­ral scheme, rheuma­tol­ogy, soci­ety, pol­i­cy, vis­i­bil­i­ty and Welsh gov­ern­ment. 

Paul Evans: This is Air­ing Pain, a pro­gramme brought to you by Pain Con­cern, the UK char­i­ty pro­vid­ing infor­ma­tion and sup­port for those of us liv­ing with pain and for those who care for us. This edi­tion of Air­ing Pain has been sup­port­ed by an edu­ca­tion­al grant from Grunen­thal. I’m Paul Evans. 

Mary Cow­ern: There’s up to 20% of adults liv­ing in pain in Wales every sin­gle day and arthri­tis and relat­ed con­di­tions are actu­al­ly the biggest cause of that pain as well. And half of those peo­ple who live with that say they expe­ri­ence pain every sin­gle day. Eight out of ten say they expe­ri­ence it most days as well. And it’s not just short term or a one-off burst. It’s con­stant con­sis­tent pain, and it actu­al­ly nev­er ever tru­ly goes away. 

Evans: In April 2019, the Min­is­ter for Health and Social Ser­vices in Wales launched the guid­ance doc­u­ment ‘Liv­ing with Per­sis­tent Pain in Wales.’ Lat­er, in Decem­ber, the Chron­ic Pain Pol­i­cy Coali­tion – that’s a UK-wide coali­tion of pro­fes­sion­al bod­ies, patient organ­i­sa­tions includ­ing Pain Con­cern, par­lia­men­tar­i­ans, and indus­try rep­re­sen­ta­tives, brought togeth­er some of Wales’ lead­ing pain experts, peo­ple liv­ing with pain, and oth­er key stake­hold­ers at the home of the Welsh Par­lia­ment, or Senedd Cym­ru, in Cardiff. The meet­ing was chaired by co-chair of the Chron­ic Pain Pol­i­cy Coali­tion, Neil Bet­teridge. But for the back­ground of the guid­ance, here’s Ann Tay­lor, who is Pro­fes­sor of Med­ical Edu­ca­tion at Cardiff Uni­ver­si­ty School of Med­i­cine. She was the lead author of the Chron­ic Pain Direc­tives in Wales pub­lished back in 2008, and she advis­es the Welsh health min­is­ter on pain matters. 

Ann Tay­lor: It was devel­oped with a wide range of Welsh Gov­ern­ment offi­cials, clin­i­cal and aca­d­e­m­ic part­ners, and ser­vice users col­lab­o­rat­ing togeth­er to pro­vide guid­ance that works for those requir­ing treat­ment as well as those receiv­ing it. The aim of the guid­ance is to increase the focus on help­ing and sup­port­ing peo­ple devel­op skills to enable them to man­age their per­sis­tent pain for them­selves, when­ev­er and wher­ev­er they need to and this will increase their abil­i­ty to stay in work and live the lives that they want to live. The guid­ance was pub­lished in May 2019 and it was issued to a wide range of stake­hold­ers includ­ing health boards, third sec­tor and health organ­i­sa­tions, and the steer­ing group advised to allow a six-month peri­od for the guid­ance to actu­al­ly bed in with­in the health boards. To over­see the pain-relat­ed work going for­ward, the Welsh gov­ern­ment has pro­posed a new advi­so­ry com­mit­tee which will look to amal­ga­mate the three advi­so­ry groups cur­rent­ly in exis­tence. The advi­so­ry com­mit­tee will then be tasked, and pro­vid­ing the min­is­ter of health and social ser­vices with well-informed, evi­dence-based argu­ments devised by those pro­vid­ing and receiv­ing treat­ment. with the aim of ensur­ing that Wales is on the fore­front of pro­vid­ing the best treat­ment, by the best peo­ple, at the best time. 

Neil Bet­teridge: Wel­come. Good evening ladies, gen­tle­men, friends, col­leagues. My name is Neil Bet­teridge. My own per­son­al and pro­fes­sion­al jour­ney, if you like, with chron­ic pain goes back a long, long time because I was only three years old when I was diag­nosed with juve­nile arthri­tis which had a very dis­abling effect on my child­hood. So, lat­er in life, pro­fes­sion­al­ly, it’s been a great hon­our to get involved with organ­i­sa­tions like Arthri­tis Care which, as many of you know, has since merged with Arthri­tis Research UK to form Ver­sus Arthri­tis and that’s one of the organ­i­sa­tions we have speak­ing with us tonight. I’ve also had the hon­our to work with EULAR: the Euro­pean Rheuma­tol­ogy Soci­ety, for the last twen­ty years on pub­lic affairs pol­i­cy issues, but real­ly try­ing to rep­re­sent the voice of the per­son liv­ing with the condition. 

You know, chron­ic pain, whether it’s attached to a spe­cif­ic dis­ease or whether it’s a stand-alone con­di­tion that has no oth­er dis­ease direct­ly asso­ci­at­ed with it, affects an enor­mous amount of peo­ple, often very severe­ly, in ways which place a great per­son­al bur­den on them, their fam­i­lies, their loved ones, but also on the wider econ­o­my and soci­ety. So we all col­lec­tive­ly, I think, have a duty to work out how best and how bet­ter peo­ple with per­sis­tent pain can be sup­port­ed to do the things they want to do, because that’s a win-win for soci­ety as a whole. I’m here tonight rep­re­sent­ing the Chron­ic Pain Pol­i­cy Coali­tion. My co-chair Mar­tin John­son is in the room some­where. Mar­tin is a GP. My back­ground, as I’ve said, is as a patient rep­re­sen­ta­tive or ser­vice user rep­re­sen­ta­tive. So, we’re try­ing to organ­ise the coali­tion in a way which we believe reflects the best, mod­ern, pro­gres­sive approach to health­care in any set­ting, which is health­care pro­fes­sion­als and patient rep­re­sen­ta­tives work­ing in part­ner­ship as a team, and whether that’s in the clin­ic or wider in pol­i­cy terms I think this has to be the way to go. The coali­tion is UK-wide, so Mar­tin and I, we don’t live in Wales, we’re not the experts about what’s hap­pen­ing here. You guys are that. But what we aim to do is to pro­vide a plat­form to facil­i­tate and bring togeth­er health­care pro­fes­sion­als, patient organ­i­sa­tions, pub­lic sec­tor work­ers, a whole range of peo­ple with a shared inter­est in chron­ic or per­sis­tent pain, and let’s not wor­ry too much about the dis­tinc­tion there, I think it’s the same thing although we may have pref­er­ences for the words, to see what it is that we can do bet­ter going for­ward. And I think we’re all very impressed with a doc­u­ment which came out here in April, ‘Liv­ing with Per­sis­tent Pain’. It sets out some fan­tas­tic aspi­ra­tions, things we should all be work­ing towards col­lec­tive­ly, and I think [we] prob­a­bly are at the stage now to see what that means in prac­tice and how we can actu­al­ly take those laud­able aspi­ra­tions for­ward and real­ly make a dif­fer­ence to the lives of peo­ple with per­sis­tent pain in Wales in a way which is sup­port­ive of a sus­tain­able health econ­o­my because that’s essen­tial too. 

So, the series of speak­ers we’ll have tonight, a few min­utes each, are here to present a range of per­spec­tives on this top­ic. So, no more ado from me, except to intro­duce the first of our speak­ers which is Pro­fes­sor Ernest Choy, who is Head of Rheuma­tol­ogy here at Cardiff at the Uni­ver­si­ty Hos­pi­tal here. Ernest is a dis­tin­guished rheuma­tol­o­gist clin­i­cian at the glob­al lev­el. And Ernest, I know you’re going to be speak­ing specif­i­cal­ly on fibromyal­gia, but on this whole area of painful con­di­tions I don’t think we can have a more dis­tin­guished clin­i­cian to start this off. So, Ernest, please. [applause] 

Ernest Choy: I’m a rheuma­tol­o­gist and most of my patients who come to my clin­ic were referred to me because they have pain some­where in the body and usu­al­ly pain that lasts for a sig­nif­i­cant peri­od of time. More than ten years ago I bumped into a researcher in the cor­ri­dor and he showed me a new imag­ing facil­i­ty, which opened a new pos­si­bil­i­ty for us. He showed me a func­tion­al MRI scan, which for the first time [it] meant that we can objec­tive­ly assess patients’ brains when they expe­ri­ence pain, and it opened up the era of research for me because in the past when the patients said that they had pain, you either believed them or you did­n’t, but you could­n’t eval­u­ate objec­tive­ly what that pain was. So, in the first study of using that scan­ner, we showed that actu­al­ly patients with fibromyal­gia or chron­ic pain, that pain was real, the brain was show­ing them that they [were] hav­ing pain some­where in the body. 

So, from there on, we spent many years to find out that in fact the pain expe­ri­ence is incred­i­bly com­plex. So, pain is fun­da­men­tal­ly pre­served in evo­lu­tion. All of us don’t have to go to school to learn about pain. We feel pain the moment that we [are] born. But that acute pain process is very impor­tant to us in pro­tect­ing us. It gen­er­ates stress, it gen­er­ates emo­tion. The issue is that the brain actu­al­ly is very active in man­ag­ing and pro­cess­ing pain. And when you have chron­ic pain, it actu­al­ly [means] that the brain is start­ing to fail to cope, and fail­ing to cope leads to a chron­ic ill­ness state. And that opened up a new area of research for us and more recent­ly, we’ve been fund­ed by Ver­sus Arthri­tis to look at how [we] can we bet­ter help patients with chron­ic pain, par­tic­u­lar­ly with fibromyal­gia. And because we don’t under­stand pain, the devel­op­ment of health ser­vices does­n’t real­ly map to the under­stand­ing [of] patients’ suf­fer­ing and health­care pro­fes­sion­als [don’t] under­stand how to help these indi­vid­u­als because they can’t eval­u­ate the pain process. 

So, we are going to do a series of work based on the health data we have in Wales, first of all to map out the patien­t’s jour­ney from the symp­tom onset to access­ing dif­fer­ent health­care pro­fes­sion­als. Hav­ing done that, we’re going to inter­view patients to under­stand their patient jour­ney, inter­view pro­fes­sion­als to under­stand how they man­age the pain, and we will use more mod­ern meth­ods to mod­el and devel­op a mod­ern health­care ser­vice for this indi­vid­ual, not only just involv­ing doc­tors [and] health­care pro­fes­sion­als but also vol­un­tary organ­i­sa­tions, to get this patient to under­stand that there is a way out of this sce­nario for them, help­ing them to self-man­age this chron­ic con­di­tion. And ulti­mate­ly, once we have a mod­el, we can go back to eval­u­ate how effi­cient this mod­el is, and hope­ful­ly to improve it. So hope­ful­ly this will be [an] iter­a­tive process and ulti­mate­ly, we’ll come out with a bet­ter man­age­ment of patients with chron­ic pain. And I think through­out the jour­ney, hope­ful­ly we will get involve­ment not only from our patients, but the pub­lic, but also dif­fer­ent health­care pro­fes­sion­als because I think we all have a very impor­tant role to play in this process. 

Thank you very much. [applause] 

Bet­teridge: Thank you, Ernest. And you men­tioned there the impor­tant role of health­care pro­fes­sion­als and patient rep­re­sen­ta­tives work­ing togeth­er to find solu­tions col­lec­tive­ly. And we’re here tonight to dis­cuss all painful con­di­tions, whether it’s chron­ic pain per se, whether it’s the pain of can­cer, neu­ro­log­i­cal con­di­tions like MS or Parkin­son’s or arthri­tis con­di­tions. But one of the ways I per­son­al­ly try to get the Euro­pean Soci­ety –  EULAR, in rheuma­tol­ogy, more engaged with the per­spec­tive of the per­son liv­ing with the con­di­tion, or the patient if you like, was to use the old civ­il rights mantra of ‘Noth­ing about us with­out us.’ In oth­er words, if you’re liv­ing with these con­di­tions, these painful often debil­i­tat­ing con­di­tions, you have a right to be at the table when deci­sions and dis­cus­sions are tak­ing place that affect you, affect your life and your care. And that means that we need good, expe­ri­enced peo­ple who can rise to that and be the per­son to present that, and our next speak­er is some­body who absolute­ly fits that bill. So, Mary Cow­an from Ver­sus Arthri­tis is some­body I worked with back in the days in Arthri­tis Care. Mary her­self has lived for thir­ty or so years [with arthri­tis]. She devel­oped arthri­tis when she was three like me, and has com­mit­ted so much of her life and ener­gy to the cause of help­ing peo­ple with painful con­di­tions like arthri­tis. And Mary, we need some­body with your pro­fes­sion­al exper­tise in pol­i­cy and pub­lic affairs to real­ly sit down and work out, with pol­i­cy­mak­ers and with health care pro­fes­sion­als, the best way for­ward. So, it’s a real hon­our to have you here with us tonight, Mary. [applause] 

Cow­ern: Wow, I think he’s bigged me up a lit­tle bit too much. I’m a bit wor­ried now, but thank you very much for those kind words, Neil. So, I want to just talk about liv­ing with per­sis­tent pain and my con­nec­tion with arthri­tis. As Neil said, I’ve lived with arthri­tis for a num­ber of years. But I think want to touch on the fact that, you know, there’s up to 20% of adults liv­ing in pain in Wales every sin­gle day. That’s a lot. That’s a lot of peo­ple. And arthri­tis and relat­ed con­di­tions are actu­al­ly the biggest cause of that pain as well. And half of those peo­ple who live with that say they expe­ri­ence pain every sin­gle day. So just stop and have a lit­tle think about that. Eight out of ten say they expe­ri­ence it most days as well. That’s a real­ly hard deal. And I’m one of those people. 

Every sin­gle day I wake up in pain. And it’s not just short term or a one-off burst, it’s con­stant con­sis­tent pain. And it can fluc­tu­ate through­out the day as well. And it actu­al­ly nev­er ever tru­ly goes away. And I know from per­son­al expe­ri­ence that that per­sis­tent pain of arthri­tis makes even the sim­plest things real­ly real­ly hard, real­ly real­ly exhaust­ing, and excru­ci­at­ing. So, can you imag­ine now being able not to stand? All of you were stand­ing here now, can you imag­ine you just can’t do that. You can’t walk. You can’t hug a loved one because of the pain you’re in. It’s a chal­lenge to be inde­pen­dent. Imag­ine not being able to remem­ber what it’s like not to live in pain. And that’s our lives as peo­ple liv­ing with pain. But put sim­ply, it steals from our lives as well. Any dai­ly tasks that we all take for grant­ed become real­ly impos­si­ble. Imag­ine not being able to pick up a pen just because you’ve got so much pain in your hand. 

Our spon­tane­ity becomes erod­ed. Because every­thing you do, you have to plan for it. You can’t be spon­ta­neous. I had to not work this morn­ing just so that I had the ener­gy to be phys­i­cal­ly here with you tonight. Going down to the shops if you run out of a pint of milk becomes a huge mam­moth task like just try­ing to run a marathon. It’s real­ly, real­ly hard. Many of us have to give up work or reduce our hours. I actu­al­ly stopped work for fif­teen years because my pain and my arthri­tis were so unman­age­able. And that robs you of a lot, not just your income but your self-esteem and your self-worth as well. So, it’s not around, you know, just liv­ing in a bit of pain. It encom­pass­es your whole life. Hob­bies, social life, all become dif­fi­cult. Three quar­ters of peo­ple in severe pain can’t do those sim­ple tasks. That’s real­ly, real­ly high. Severe pain has a huge impact on fatigue lev­els as well. And liv­ing in pain com­plete­ly exhausts you, it sucks the absolute ener­gy out of you. The impact is that loss of nor­mal­i­ty. You don’t become you any­more. You’re some­one else. You’re this per­son liv­ing with pain, you get labelled. And it’s that loss of los­ing the real you that you have to come to terms with. And as Ernest very elo­quent­ly said, it’s not just about the phys­i­cal pain, it’s all the oth­er stuff. 

Yet the pain of arthri­tis and pain in gen­er­al remains hid­den. It’s not always treat­ed seri­ous­ly as we heard already. Every­day phras­es like ‘No pain, no gain,’ or the glo­ri­fi­ca­tion of the pain thresh­old that we hear quite often or, you know, ‘Come on, just grin and bear it.’ There’s a cul­ture there that exas­per­ates that silent suf­fer­ing for peo­ple liv­ing with pain as well. It pre­vents peo­ple from speak­ing open­ly and hon­est­ly about their pain and how they’re feel­ing, some­thing which is inte­gral to actu­al­ly tak­ing own­er­ship and man­ag­ing your pain. Ver­sus Arthri­tis, we iden­ti­fied that more than three quar­ters of peo­ple in Wales who live with con­stant pain don’t say that, they hide it. They don’t share it with oth­ers because they don’t want peo­ple to feel sor­ry for them. And it’s not about feel­ing sor­ry for you. It’s about man­ag­ing it and deal­ing with it. So just because pain is often invis­i­ble, and it’s hard to describe, it’s very, very easy for oth­ers to ignore it and pass it away. It’s not under­stood and it’s dis­re­gard­ed as a prob­lem that needs to be dealt with. And it’s not just about tak­ing pills. As Ernest very elo­quent­ly said, it’s around treat­ing peo­ple holis­ti­cal­ly and tak­ing a broad­er look about what’s under­ly­ing with that pain, what oth­er fac­tors are impact­ing on it. But for many, many, many peo­ple we’re hear­ing that it’s just drug treat­ment that they’re hav­ing, and they need care plans like me. That was the thing that worked for me. It was­n’t just the drug treat­ments, it was tak­ing a self-man­age­ment and a very holis­tic approach to my treat­ment. Thank you for lis­ten­ing. Thank you. [applause] 

Bet­teridge: Absolute­ly, and in terms of intro­duc­ing our next speak­er I’d just like to build on your ref­er­ence to self-man­age­ment. Because I noticed when the liv­ing with per­sis­tent pain doc­u­ment was pub­lished in April, there was a very pre­cise ref­er­ence to sup­port­ed self-man­age­ment being what is need­ed. And this is so impor­tant. Whether that’s the role of the spe­cial­ist nurse in oncol­o­gy or the role of organ­i­sa­tions like the MS Soci­ety, or whether it’s oth­er mem­bers of the mul­ti­dis­ci­pli­nary team, help­ing the per­son to live their life 24/7 –  because that’s what chron­ic or per­sis­tent pain is, it’s a long-term con­di­tion which requires the per­son to man­age them­selves as best they can con­tin­u­ous­ly – then nobody in terms of the health­care pro­fes­sions pro­vides greater sup­port to many peo­ple in this sit­u­a­tion than phys­io­ther­a­pists and it’s an often over­looked, under­val­ued, neglect­ed part of the mul­ti­dis­ci­pli­nary team. So it’s with great plea­sure I intro­duce David Eas­t­on, who’s from Hywel Dda in Cardi­gan. I’ve prob­a­bly just mur­dered a small sec­tion of the Welsh lan­guage, I apol­o­gise. My Welsh wife will kill me when I get home. But any­way, from Cardi­gan, David, who has an inter­est as a phys­io­ther­a­pist in the broad­er issues around pain sci­ence and man­age­ment, is here to deliv­er the phys­io­ther­a­py per­spec­tive. And as some­body who got back on my own feet, lit­er­al­ly, as a child through physio large­ly, I par­tic­u­lar­ly wel­come your pres­ence, David, thank you. [applause] 

David Eas­t­on: I’m here to talk to you today about a spe­cif­ic evi­dence-based com­mu­ni­ty reha­bil­i­ta­tion project called ESCAPE-Pain that’s been designed specif­i­cal­ly for osteoarthri­tis affect­ing the hips and knees. I’ve been per­son­al­ly deliv­er­ing this pro­gramme as a part of my role as a physio in Cardi­gan in West Wales for the last two years. And more recent­ly I’ve been pilot­ing a col­lab­o­ra­tive approach of this pro­gramme along­side my exer­cise refer­ral col­league, which has result­ed in seam­less tran­si­tion, [so] peo­ple [that] have [been] com­plet­ing the pro­gramme [are con­tin­u­ing] to access com­mu­ni­ty-based exer­cise classes. 

Over the last five years, there have been a grow­ing num­ber of organ­i­sa­tions offer­ing this pro­gramme across all nations in the UK. There are cur­rent­ly over 260 active sites, the major­i­ty of which are based in Eng­land. Along with the four sites in Wales, there are two in North­ern Ire­land and there’s grow­ing inter­est in Scot­land. The Health Inno­va­tion Net­work, the organ­i­sa­tion behind this pro­gramme, has designed an accred­it­ed train­ing pro­gramme to enable wide­spread scale-up and ongo­ing cen­tralised sup­port. I’ve arranged for key par­tic­i­pant mate­r­i­al to be trans­lat­ed into Welsh, so I believe this pro­gramme is absolute­ly ready to be rolled out more wide­ly across Wales. 

So why ESCAPE-Pain? Well, some influ­en­tial aca­d­e­mics in the field of pain man­age­ment, name­ly Chris Main, Paul Wat­son and Michael Sul­li­van, in 2008 stat­ed, ‘We now have a large armamentarium‑,’ I would­n’t have used that word myself, ‘of inter­ven­tions on which to draw, and while refine­ment may hap­pen, empha­sis should not focus so much on new tech­niques, but bet­ter selec­tion and mov­ing these inter­ven­tions upstream to the start of the episode.’ ESCAPE-Pain does exact­ly this. It’s a pro­gramme that can be accessed through pri­ma­ry care. It can be embed­ded with­in local com­mu­ni­ty ser­vices and pro­vide access to good qual­i­ty, prac­ti­cal advice and sup­port. The broad inclu­sion cri­te­ria mean a wide range of peo­ple [in] [their] ear­ly for­ties right through their nineties and beyond can access this pro­gramme and this is essen­tial for osteoarthri­tis because it affects peo­ple of all ages and at var­i­ous stages of our life cycle. The research and nation­al clin­i­cal audit data tell us that this pro­vides good patient report­ed out­comes in terms of pain, func­tion and qual­i­ty of life for this high­ly preva­lent con­di­tion. But not only that, we have evi­dence now that enables peo­ple to increase their phys­i­cal activ­i­ty and retain it beyond the pro­gramme. And this is very impor­tant because it goes to a long way to man­ag­ing pre­vent­ing many oth­er com­mon health con­di­tions includ­ing heart dis­ease, dia­betes, depres­sion, and cancer. 

So that’s why it’s called ESCAPE-Pain: Enabling Self-man­age­ment and Cop­ing with Arthrit­ic Pain through Exer­cise. So how does it work? Well, there are four key ele­ments that [I’ve] iden­ti­fied [which are] crit­i­cal to [the] suc­cess of this pro­gramme. First­ly, the num­ber and fre­quen­cy of ses­sions, so peo­ple attend twelve ses­sions over six weeks. Sec­ond­ly, every ses­sion has exer­cise and edu­ca­tion as a part of that and the edu­ca­tion is using mod­ern behav­iour­al change tech­niques and com­mu­ni­ca­tion styles, enabling peo­ple to iden­ti­fy the prob­lems that they need to change in order to help them bet­ter adapt to this con­di­tion. And the exer­cise is per­son­alised and pro­gres­sive over the six weeks in order to opti­mise their out­comes. Third­ly, the group begin and end togeth­er. This is explic­it recog­ni­tion that peo­ple with long term health prob­lems gain a great deal from con­nect­ing, learn­ing and sup­port­ing oth­ers with sim­i­lar dif­fi­cul­ties. In some cir­cum­stances, the change that peo­ple expe­ri­ence can be rapid and dra­mat­ic, and this can be very help­ful for oth­ers to realise and recog­nise that in time, there is hope for them in their con­di­tion. There’s a strong sense of com­mu­ni­ty among the par­tic­i­pants with­in each group and for some this can last well beyond the length of the pro­gramme. Social iso­la­tion is an all-too-com­mon prob­lem for peo­ple with long-term pain. So, pro­vid­ing the oppor­tu­ni­ty for peo­ple to make new social con­nec­tions with­in their com­mu­ni­ty can­not be under­es­ti­mat­ed. And final­ly, what we do is we col­lect patient-report­ed out­come data and we share this with the Health Inno­va­tion Net­work. And this ensures that the pos­i­tive research out­comes that we’ve iden­ti­fied are being trans­ferred and main­tained at the local level. 

So what are the ben­e­fits to the health ser­vice? Well it’s an effec­tive inter­ven­tion that goes beyond the pro­gramme.  It pre­vents repeat refer­rals and vis­its to GPs, and it can reduce depen­den­cy on med­ica­tion. Rolled out across Wales, if we work togeth­er with all rel­e­vant stake­hold­ers with the hip and knee pain path­ways, we could see a sig­nif­i­cant impact on the over­all demand for health­care inter­ven­tions for osteoarthri­tis. Inde­pen­dent analy­sis by Pub­lic Health Eng­land has con­clud­ed that the return on invest­ment for every pound that you put into this pro­gramme, you’ll save £5.20 in health­care costs. So what are the bar­ri­ers? Why is it not more wide­ly avail­able? Well on the face of it, the length of the pro­gramme may appear too much for already stretched ser­vices to imple­ment with­in their exist­ing ser­vice mod­el. But we all know it’s time to shift our approach to more proac­tive meth­ods with­in our health ser­vices, espe­cial­ly with com­plex and vari­able pain con­di­tions such as osteoarthri­tis. With­out offer­ing the nec­es­sary time and oppor­tu­ni­ty for peo­ple with this con­di­tion to attain and retain the nec­es­sary knowl­edge and skills, we will fail to see the long-term ben­e­fits that this pro­gramme has demon­strat­ed. Cur­rent ser­vices may also believe that they offer some­thing sim­i­lar to ESCAPE-Pain already. But I would argue [that] when you look at these alter­na­tive pro­grammes, they will lack at least one, if not more, of the four key prin­ci­ples I pre­vi­ous­ly men­tioned. So I would say that these pro­grammes are not tru­ly com­pa­ra­ble. Nei­ther have they been test­ed or scru­ti­nised to the lev­el of ESCAPE-Pain. And anoth­er issue for lots of reha­bil­i­ta­tion ser­vices, such as mus­cu­loskele­tal phys­io­ther­a­py and com­mu­ni­ty leisure ser­vices, is we don’t have the finan­cial resources to send staff on the train­ing day to become a facil­i­ta­tor. This is key in order to make sure that we give good qual­i­ty at the local lev­el and we retain fideli­ty of the pro­gramme when we roll it out more widely. 

So, what do I want to say to you? Well, my expe­ri­ence, and I’m sure maybe oth­er peo­ple with­in this room already know this, [is] that actu­al­ly build­ing things up from the bot­tom is real­ly hard. The things we’ve achieved so far in Wales has been in large part down to good­will, and that’s only ever going to take us so far. We’ve got the evi­dence to show the pro­gramme does work, and it presents a huge oppor­tu­ni­ty for large num­bers to escape the repeat inter­ven­tions, and I believe it mer­its wider roll­out across Wales. The ben­e­fits are dri­ven into many more ser­vice areas and phys­io­ther­a­py and it needs lead­ers across the health sec­tor to sup­port and invest in mus­cu­loskele­tal ther­a­py and com­mu­ni­ty leisure ser­vices to enable wider roll out. The ben­e­fits to these ser­vices may not be imme­di­ate­ly vis­i­ble, but we’ve proven they’re there and that they are numer­ous. And for those in the room that may be famil­iar with the ten Nation­al Design Prin­ci­ples set out by the Health­i­er Wales doc­u­ment, to dri­ve change and trans­for­ma­tion in our NHS, hope­ful­ly I’ve been able to artic­u­late that ESCAPE-Pain is pret­ty much tick­ing all of those box­es. Thank you very much. [applause] 

Bet­teridge: Thank you, David. So, we’ve had per­spec­tives then from a clin­i­cian, from a phys­io­ther­a­pist, and from the ser­vice user point of view, and we’re turn­ing now to a nation­al per­spec­tive and specif­i­cal­ly the nation of Scot­land. And one of the joys of being part of a UK-wide coali­tion in chron­ic pain is when you can iden­ti­fy where pro­gres­sive good strides have been made in sup­port­ing peo­ple with chron­ic pain. It’s impor­tant, I think it’s a duty on us, to try and high­light that to see whether there’s learn­ing that can be adopt­ed else­where. So, our next speak­er, with that in mind, is Paul Cameron who, on top of hav­ing an impor­tant job as lead­ing the clin­i­cal pain ser­vice in Fife, is also the spe­cial­ty advi­sor on per­sis­tent pain to the Chief Med­ical Offi­cer in Scot­land, and has pro­vid­ed great lead­er­ship and coor­di­na­tion to the Nation­al Advi­so­ry Com­mit­tee which has been estab­lished there and which real­ly has been doing and con­tin­ues to do some great work. And I hope there’ll be some­thing here from the brief glimpse we can get in the next five min­utes Paul, that maybe, you know, here in Wales some learn­ings can be derived because it real­ly has been tremen­dous­ly impres­sive. So, ladies and gen­tle­men, Paul Cameron. 

Paul Cameron: Thank you very much. So, I have five min­utes to sum up about ten years’ worth of work. So, I have to say right at the start when there was talk about a chron­ic pain ser­vice shut­ting down, and [I] was real­ly, real­ly sad to hear that but very angry to hear that because to me, that’s a symp­tom of a com­plete lack of under­stand­ing about chron­ic or per­sis­tent pain, what­ev­er you want to call it. It’s a com­plete lack of under­stand­ing of what it is and how many peo­ple it affects, and [how] some­times these ser­vices are seen as an added lux­u­ry when clear­ly, they’re not. We’re quite lucky in Scot­land now, but we were prob­a­bly in the same sit­u­a­tion a few years ago. We had a num­ber of reports writ­ten, which I’m sure has hap­pened here before as well. Peo­ple write very nice reports, they are print­ed off, sent around [and] they are added to the pile of oth­er reports. They get put on a nice shelf, they col­lect dust, and every­one for­gets about it unless they’re writ­ing an essay at some point for a mas­ters. And that’s what hap­pened with us. We had sev­er­al reports writ­ten over the years. What changed for us was a report called the GRIPS Report in 2008. It was pub­lished ‘Get­ting to Grips with Chron­ic Pain, or Pain.’ But that in itself was­n’t the change because that was anoth­er report. It had a nice cov­er, I have to say, it was love­ly in terms of look­ing. But the biggest change was that the First Min­is­ter, or rather the Health Sec­re­tary at that time, now the First Min­is­ter, Nico­la Stur­geon stood up and said that she recog­nised chron­ic pain as a con­di­tion in its own right. Now that changed things dra­mat­i­cal­ly for us. 

[And] I sup­pose I’ve been asked to speak about the Scot­tish per­spec­tive and I think it’s the same every­where you go; in order to get these ser­vices improved and pushed and sup­port­ed, it needs a nation­al guide, it needs a nation­al per­spec­tive. But not just a nice speech, but con­tin­ued sup­port and con­tin­ued over­sight, with agen­das, with rec­om­men­da­tions, with action points, and that’s what we got. And it’s what we have now and this is why we have a Nation­al Advi­so­ry Com­mit­tee. We start­ed off with a min­is­te­r­i­al com­mit­tee. Now that sat with a min­is­ter on there, the then Sec­re­tary for Health, and her job was to try and make sure that we pushed the agen­da for­ward. That was great for us because you can’t get any bet­ter sup­port than hav­ing an MP or MSP sit­ting round the table. That pushed things dra­mat­i­cal­ly. It cre­at­ed [not only] more reports but actu­al­ly more guide­lines. It put chron­ic pain on the agen­da, on the nation­al agen­da. It asked for quar­ter­ly reports for wait­ing lists for pain clin­ics, so sud­den­ly every­body want­ed to know how we were per­form­ing. And then of course the health boards, when they’re asked for that type of infor­ma­tion, sud­den­ly they want to per­form bet­ter. We were asked to do so many dif­fer­ent parts but we cre­at­ed a doc­u­ment, the Qual­i­ty Pre­scrib­ing Doc­u­ment, for exam­ple, look­ing at real­is­tic pre­scrib­ing, at depre­scrib­ing, ratio­nal­is­ing, pre­scrib­ing, build­ing in an audit into that pre­scrib­ing, and that’s being imple­ment­ed just now. We looked at the mea­sure­ment of chron­ic pain and what’s called the Nation­al Core Data Set, we’re build­ing that as we speak. It’s gone through two years of val­i­da­tion and it’s now being put in the hands of our Nation­al Infor­ma­tion Ser­vices Divi­sion who will be imple­ment­ing that across the whole of Scot­land. So we will start gath­er­ing more data than just wait­ing list data. On the back of recog­nis­ing that actu­al­ly most of pain is man­aged in pri­ma­ry care, we start­ed to build resources in pri­ma­ry care. So we have leisure cen­tres involved, we have Pain Con­cern, we have Pain Asso­ci­a­tion of Scot­land involved in pain man­age­ment pro­grammes. We have resources in every library in Scot­land. We have so many dif­fer­ent aspects, but it all start­ed with a nation­al sup­port. And I think when I was asked to come and pro­vide my Scot­tish per­spec­tive, my per­spec­tive is with­in the Welsh Assem­bly we should have Welsh nation­al sup­port. And with that sup­port you should have con­tin­ued mark­ers, rec­om­men­da­tions, dri­ving it for­ward, look­ing at it, mak­ing sure it’s hap­pen­ing, and look­ing to see what will make that hap­pen. Thank you. [applause] 

Bet­teridge: As you said, Paul, most per­sis­tent pain is man­aged in the com­mu­ni­ty or in pri­ma­ry care. So it would be remiss, I think, not to have a pri­ma­ry care GP per­spec­tive here. So, it’s my plea­sure now to intro­duce Lucy Mor­ris who’s a GP part­ner at the Belle­vue Prac­tice in New­port. This is an incred­i­bly impor­tant per­spec­tive because if we are to make real pos­i­tive strides around the bet­ter man­age­ment of peo­ple with per­sis­tent pain, their con­di­tion, then we absolute­ly need to get the full, inte­grat­ed involve­ment of pri­ma­ry care. So Lucy, your per­spec­tive is invalu­able here, please. [applause] 

Lucy Mor­ris: Thank you very much. I will say I do feel like a bit of an imposter com­ing here because I’m the only per­son that’s not an expert in either hav­ing pain or research­ing pain. I’ve been work­ing as a GP as a part­ner in New­port for over ten years now, the biggest prac­tice in New­port in fact, we’ve got 17,500 patients. So, I do have a lot of expe­ri­ence of help­ing patients who are real­ly gen­uine­ly strug­gling to live their lives with per­sis­tent pain. I asked one of my col­leagues in the prac­tice, who knows a bit more [about] how to work the IT sys­tems than I do, to do some factfind­ing for me. And I’ve asked 17,500 patients. I want­ed to find out how many of them were liv­ing with per­sis­tent pain. I had a feel­ing it was quite a few, and of course the cod­ing of these things is nev­er per­fect, but I asked him to search two main codes. We can either allo­cate a code to a patient if we believe they’ve got fibromyal­gia. The oth­er one that we use quite a bit is chron­ic intractable pain. And these codes allow us to search our data­bas­es and see how many patients are liv­ing with per­sis­tent pain. We came up with 388 patients on our list and I thought, ‘Well, that’s less than I thought actu­al­ly.’ And I think that’s more to do with the fact that a lot of the patients liv­ing with per­sis­tent pain may have codes such as osteoarthri­tis or var­i­ous oth­er inflam­ma­to­ry arthropathies etc. So, I then tried to estab­lish, ‘Okay, well, how many of our patients are on long-term opi­ate-based, opi­oid-based anal­gesics?’ So, pain relief that should­n’t real­ly be issued to peo­ple who aren’t either suf­fer­ing with, you know, a short-term con­di­tion or pal­lia­tive care or can­cer pain. So we exclud­ed those patients, and we found that near­ly 1,300 of our patients are hav­ing repeat pre­scrip­tions of opi­oid anal­ge­sia. And that, I thought, was quite alarm­ing con­sid­er­ing that, I think, most of my col­leagues and myself are aware that that’s not best prac­tice. So I think, ‘Well, how does that hap­pen?’ We know that that’s not the best way to man­age patients who are liv­ing with per­sis­tent pain. And yet, here we are with well over 1,000 patients hav­ing these pre­scrip­tions month in, month out, and some­times more fre­quent­ly than that. It’s anoth­er prob­lem with patients per­haps overus­ing med­ica­tion that we have. 

And I think it comes down to the effect of GPs feel­ing over­whelmed a lot of the time, feel­ing that they don’t have the resources to best sup­port their patients. Most GPs want noth­ing more than just to make it bet­ter. It’s not in our inter­est as GPs to try and be obstruc­tive to patients, try­ing not to help them. If some­body comes to us in a cri­sis, we want to improve their sit­u­a­tion. I see moth­ers who are in so much pain they can’t pick up their young babies. I see peo­ple who are car­ing for peo­ple in per­sis­tent pain, every day chil­dren car­ing for par­ents in per­sis­tent pain and it’s absolute­ly heart-break­ing. And yet, when we look at the ser­vices avail­able to us, when I start­ed out as a GP, say for exam­ple if I had a patient who had a diag­no­sis of fibromyal­gia, I would get some very use­ful infor­ma­tion from my col­leagues in rheuma­tol­ogy, or per­haps the pain clin­ic ser­vices would be able to offer some sup­port. Over recent years, the bur­den on those ser­vices has become so great that they now, if I refer a patient who I believe has a diag­no­sis of fibromyal­gia, I will get a very help­ful let­ter back to say, ‘We will not see this patient because there’s noth­ing our ser­vice can offer for them. But here’s some infor­ma­tion about some drugs that may be of use and local ser­vices.’ With the best will in the world, we know about those local ser­vices and we know about those med­ica­tions. We’re look­ing for almost a bit of bol­ster­ing, a bit of sup­port for what we’re doing with those patients. And it’s the same with the pain ser­vices as well, they just sim­ply don’t have the capac­i­ty to take on groups of patients where they don’t believe they’re going to be able to help much. 

So, increas­ing­ly, we’re deal­ing with patients with very com­plex prob­lems but being entire­ly man­aged in a pri­ma­ry care set­ting when it comes to their med­ica­tion man­age­ment. We do have non-NHS ser­vices. We’ve heard a lit­tle bit from the oth­er speak­ers about things like the Nation­al Exer­cise Refer­ral Scheme, which is an incred­i­bly use­ful pro­gramme that runs var­i­ous dif­fer­ent pro­grammes for exer­cise sup­port, not just for pain man­age­ment. Unfor­tu­nate­ly for some of my patients, they just sim­ply find the idea of being referred for an expert exer­cise pro­gramme over­whelm­ing. And then when you also look at the rates of patients who com­plete the pro­gramme, I actu­al­ly emailed to get some fig­ures from them. They came through to me today that, of the refer­rals last year in Wales, they had some­where in the region of 1,350 refer­rals to the Exer­cise Refer­ral Scheme. Patients who are still exer­cis­ing a year lat­er was less than 350, so the drop-off rate is quite sig­nif­i­cant as well. So, there is a lot of will to sup­port these extra ser­vices. But I think embed­ding things in pri­ma­ry care, per­haps I do agree that we should try and move away from med­ical­is­ing per­sis­tent pain and try­ing to sup­port peo­ple to live in the com­mu­ni­ty with it. But I do think a step­wise pro­gramme, where per­haps we have peo­ple embed­ded par­tic­u­lar­ly the larg­er gen­er­al prac­tices, [could be ben­e­fi­cial]. We’re hav­ing a lot of suc­cess diver­si­fy­ing our work­force pop­u­la­tion. In my prac­tice we have nurse prac­ti­tion­ers, phar­ma­cists, more recent­ly we’ve tak­en on a com­mu­ni­ty psy­chi­atric nurse, all work­ing full-time in gen­er­al prac­tice so that patients, when they come to our surgery, no longer have the expec­ta­tion that they’re going to see a GP, but have the expec­ta­tion that they will see the right per­son to help their par­tic­u­lar con­di­tion. And I’d like to see more pain psy­chol­o­gists, or peo­ple who have exper­tise in sup­port­ing patients with these per­sis­tent prob­lems, being embed­ded in the larg­er gen­er­al prac­tices to bet­ter sup­port our patients. So, there is a lot of will to improve the sit­u­a­tion from a pri­ma­ry care per­spec­tive, but still a long way to go. So, thank you for invit­ing me this evening. [applause] 

Bet­teridge: So, we’re pret­ty much through then. I don’t want to give any plat­i­tudes at this point. I think you’ve all heard the spe­cial­ist and gen­er­al­ist per­spec­tives on this impor­tant top­ic. I hope it’s giv­en you food for thought. It looks, feels and sounds to me like Wales is in a posi­tion right now to take a big next step for­ward, a real­ly impor­tant next step over this next peri­od, to get this right for peo­ple with chron­ic pain, and I think they deserve that. Nos da (‘good night’). [applause] 

Evans: That’s Neil Bet­teridge of the Chron­ic Pol­i­cy Coali­tion who chaired this meet­ing about the new guid­ance doc­u­ment ‘Liv­ing with Per­sis­tent Pain in Wales’. As always, I’ll just remind you that whilst we in Pain Con­cern 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 well-being. He or she is the only per­son who knows you and your cir­cum­stances and, there­fore, the appro­pri­ate action to take on your behalf. Now, you can find all the resources to sup­port the man­age­ment of chron­ic pain, includ­ing details of Pain Concern’s helpline, videos, leaflets, all edi­tions of Air­ing Pain and Pain Mat­ters mag­a­zine at Pain Concern’s web­site which is sim­ply painconcern.org.uk. And rather than giv­ing you a con­fus­ing, long, com­pli­cat­ed web address for you to down­load the impor­tant ‘Liv­ing with Per­sis­tent Pain in Wales’ doc­u­ment, I sug­gest you just put that title, ‘Liv­ing with Per­sis­tent Pain in Wales,’ into your search engine. Here’s Mary Cow­ern, Wales’ Direc­tor of Ver­sus Arthri­tis to end this edi­tion of Air­ing Pain. 

Cow­ern: The real­i­ty of it is the pain won’t go away. We know it’s not going to go away. We’re not going to cure it, but we can man­age it. And it’s going to be dif­fer­ent for every­body. And it’ll be dif­fer­ent for every­body in the way they man­age it as well so it’s impor­tant that peo­ple get the help that’s right for them. So that tai­lored approach to their pain man­age­ment, treat­ing peo­ple holis­ti­cal­ly, hear­ing the whole sto­ry about their pain, can help them under­stand that pain bet­ter as well, and tai­lor that sup­port that they des­per­ate­ly need. So at Ver­sus Arthri­tis, we believe it’s time for change, as I do. And I think the time is right in Wales for that change now as well. Let’s stop peo­ple putting up with pain. Let’s stop peo­ple ignor­ing pain. Let’s change soci­ety’s atti­tudes to pain and let peo­ple like myself be open and take away that silent impact of it. 


Con­trib­u­tors: 

  • Neil Bet­teridge, Co-Chair, Chron­ic Pain Pol­i­cy Coalition 
  • Dr Paul Cameron, Spe­cial­ty Advi­sor to the Chief Med­ical Offi­cer for Scotland 
  • Pro­fes­sor Ernest Choy, Head of Rheuma­tol­ogy, Cardiff University 
  • Mary Cow­ern, Wales Direc­tor, Ver­sus Arthritis 
  • David Eas­t­on, Phys­io­ther­a­pist, Hywel Dda NHS Trust 
  • Dr Lucy Mor­ris, GP part­ner, Belle­vue Prac­tice, Newport 
  • Pro­fes­sor Ann Tay­lor, Pro­fes­sor in Med­ical Edu­ca­tion, Cardiff University. 

More infor­ma­tion: 

Tran­scribed by Cara Manning-Diabira 

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