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Transcript — Programme 96: The British Pain Society at 50

In hon­our of the British Pain Soci­ety reach­ing a 50-year mile­stone, cur­rent BPS pres­i­dent Dr Andrew Bara­nows­ki, found­ing mem­ber Pro­fes­sor Sir Michael Bond, and Pain Concern’s chair Heather Wal­lace were invit­ed to dis­cuss a wide vari­ety of top­ics relat­ing to the under­stand­ing of pain

To lis­ten to this pro­gramme, please click here.

This pro­gramme was fund­ed by an edu­ca­tion­al grant from Napp Phar­ma­ceu­ti­cals Ltd.

In 2017, the British Pain Soci­ety cel­e­brat­ed its fifti­eth year as one of the fore­most organ­i­sa­tions for fur­ther­ing the under­stand­ing of pain, and is now the old­est and largest mul­ti­dis­ci­pli­nary pain-focused organ­i­sa­tion in the UK.

Found­ed as The Pain Group in 1967, its mem­ber­ship was lim­it­ed pure­ly to anaes­thetists work­ing in pain clin­ics.  In 1979, the organ­i­sa­tion reg­is­tered as a char­i­ty, chang­ing its name to the Intractable Pain Soci­ety of Great Britain and Ireland.

Over the years, the organ­i­sa­tion became increas­ing­ly mul­ti­dis­ci­pli­nary and, in 1988, changed its name to The Pain Soci­ety to reflect this shift. The society’s mem­ber­ship and activ­i­ties con­tin­ued to grow, and in 2004 the Pain Soci­ety trans­ferred all its assets to an organ­i­sa­tion with char­i­ta­ble sta­tus and became The British Pain Society.

As the largest pro­fes­sion­al organ­i­sa­tion in the field of pain, the BPS con­tin­ues to strive to pro­vide an evi­dence-based, mul­ti­dis­ci­pli­nary approach to rais­ing aware­ness for those liv­ing with pain, and to ele­vate pain edu­ca­tion and management.

To cel­e­brate this sto­ried fifty years, Pain Con­cern invit­ed Dr Andrew Bara­nows­ki, cur­rent pres­i­dent of the BPS, Pro­fes­sor Sir Michael Bond, one of the world’s lead­ing author­i­ties on the psy­cho­log­i­cal effects of pain and one of the peo­ple involved in the society’s ori­gins, to speak with Pain Concern’s chair Heather Wal­lace. This dis­cus­sion explores the past, present and future of The British Pain Society.

Issues cov­ered in this pro­gramme include: Abdom­i­nal pain, blad­der pain, can­cer, chemother­a­py, chron­ic pri­ma­ry pain, depres­sion, epilep­sy, fund­ing and avail­abil­i­ty of pain ser­vices, pol­i­cy, hypochon­dri­a­sis, pelvic pain, psy­chol­o­gy, reha­bil­i­ta­tion, research, seizures and trauma.

Andrew Bara­nows­ki: Dear friends and col­leagues it is my great plea­sure to wel­come our mem­bers, guests and of course the fan­tas­tic fac­ul­ty. Both inter­na­tion­al and home grown as well as both our loy­al and new exhibitors to this years British Pain Soci­ety Annu­al Sci­en­tif­ic Meeting.

This meet­ing is tru­ly sig­nif­i­cant as it is the 50th such meet­ing. The intractable Pain Soci­ety of Great Britain and Ire­land was formed in 1967 mak­ing our soci­ety prob­a­bly the old­est pain soci­ety in the world and this our 50th anniver­sary. Their first meet­ing was in Man­ches­ter with 17 attendees.

Since that meet­ing we have grown in strength and we have near­ly 600 atten­dees at this years meet­ing. This year in recog­ni­tion of the achieve­ments of the British Pain Soci­ety we’ll be launch­ing the nation­al aware­ness cam­paign. All of you can and please must help by rais­ing the aware­ness of those liv­ing with pain.

We can also raise aware­ness of what you do to sup­port the indi­vid­ual liv­ing with pain, their car­ers and the fam­i­ly and what the British Pain Soci­ety does to sup­port you to pro­vide the best evi­dence based mul­ti­dis­ci­pli­nary team approach. Thank you all for your sup­port in attending.

this, the 50th ASM of the British Pain Soci­ety (applause)

Michael Bond: I start­ed pain research or an inter­est in pain in 1963 when I was giv­en the task of doing an MD on chemother­a­py in women with car­ci­no­ma of the cervix and dur­ing the course of my work I observed that even though they had the same con­di­tion, the same lev­el of devel­op­ment and were get­ting basi­cal­ly the same treat­ment the pain they expe­ri­enced seemed to dif­fer quite a lot and I won­dered why.

What could be the rea­son? Now it hap­pened that about the same time I changed over from surgery for rea­sons which I don’t need to go into. I became a trainee in the uni­ver­si­ty depart­ment of psy­chi­a­try in Sheffield and want­ed to car­ry this inter­est in pain with me and as it hap­pened, there were two peo­ple in the depart­ment one man called [Harold Mer­scey], who is world famous in pain research lit­er­a­ture and the oth­er is a man called [Isi Polovs­ki], who is also in his time very famous and so I had these two men who were emi­nent­ly able to help and I said “what we need to do is think of a way of mea­sur­ing pain in the women that I’ve been studying.”

And [Polovs­ki] and I set about it and in 1966 we pub­lished the first account of the mea­sure­ment of pain using some­thing called an ana­logue scale which is real­ly a zero to ten scale and that’s how I got start­ed. In 1967 and I don’t know how it hap­pened, I found myself with a group of anaes­thetists, con­sul­tant anaes­thetists, I think it was in [Sol­ford]. They gath­ered to talk about the treat­ment of pain. They were all inter­est­ed and prac­tic­ing pain man­age­ment by var­i­ous forms of injec­tion, put it that way and over the next two years they have fur­ther dis­cus­sions about estab­lish­ing a soci­ety and in 1969, they decid­ed to found the British Intractable Pain Society.

So, I was there at the ini­tial dis­cus­sions and I was the only per­son there who was not a con­sul­tant and not an anaes­thetist and I hap­pened to have in my pock­et the slides I had used in a talk else­where the pre­vi­ous day about pain and per­son­al­i­ty and women with car­ci­no­ma of the cervix and they said “would you like to give us the talk.” So, I did, that’s how I got involved with what became to begin with the Intractable Pain Society.

In the treat­ment of pain at that time was quite dif­fer­ent from the way we approached the prob­lems now, for exam­ple it was the pain that was treat­ed not the per­son so as a con­se­quence, peo­ple like those women I was talk­ing about ear­li­er, would all be giv­en the same drugs for their pain how­ev­er much they had or didn’t have and one of things I did was to mea­sure pain using the ana­logue scale in a ward of women who had painful con­di­tions of var­i­ous kinds and a ward full of men.

I divid­ed the drugs they had into three groups, pow­er­ful, medi­um and mild. Well the first thing I noticed was that the men were nev­er giv­en the pow­er­ful drugs irre­spec­tive of what their scores were and I asked why and the rea­son I was giv­en was that men are expect­ed to bare pain well. Now that was a cul­tur­al char­ac­ter­is­tic that was quite strong at that time. The sec­ond thing was that hav­ing record­ed their pain lev­els amongst the women who did all receive analgesics.

There was no rela­tion­ship between what they were giv­en and what they record­ed, so the tablets could have been in a buck­et in the mid­dle of the room and each one could of tak­en any­one they fan­cied, I would have been much the same I sup­pose but it showed that pain med­ica­tion was giv­en accord­ing to a rit­u­al that had been estab­lished over the years, for this con­di­tion you give this and for that one you give that and all that almost imme­di­ate­ly changed until we realised that this was com­plete­ly unac­cept­able way of deal­ing with pain prob­lems and at that time relat­ing, get­ting the per­son to tell you about their pain and mea­sur­ing their pain, look­ing at the med­ica­tion that might be need­ed for that pain became very much more com­mon prac­tice, where I was at the time.

So that’s where it was when I start­ed. The indi­vid­u­als who came togeth­er felt that there was a degree of iso­la­tion and what they want­ed to do was to come togeth­er to talk about ways of improv­ing pain man­age­ment and that’s how it start­ed. I mean the first ten years almost, it was con­sul­tants in anaes­thet­ics only and the senior reg­is­trars were brought in but it didn’t become mul­ti-pro­fes­sion­al until about 1987 after the foun­da­tion of the inter­na­tion­al asso­ci­a­tion, which was found­ed as a mul­ti-pro­fes­sion­al organisation.

So, the psy­cho­log­i­cal and social aspects of pain in the ear­ly years wasn’t their major con­sid­er­a­tion although they acknowl­edged that these issues were some­thing they should be con­sid­ered but they came togeth­er to share knowl­edge for the ear­ly pain meet­ings it was pri­mar­i­ly the pre­sen­ta­tion of anec­do­tal mate­r­i­al. This is how I do it. I’ve done ten cas­es of this and these are what my results are.

There was no ques­tion of peo­ple doing tri­als of any descrip­tion but they were trans­fer­ring infor­ma­tion from… you know one to anoth­er and pre­sum­able improv­ing their tech­nique and so forth until ulti­mate­ly it was decid­ed it had to be put onto stan­dard­ised foot­ing and mem­ber­ship, prop­er struc­ture and Mark [Inaudi­ble] was real­ly the dri­ving force behind that and he became the first chair­man I think it was of the society

Andrew Bara­nows­ki: Most of the mem­bers if not all of the mem­bers apart from your­self were anaesthetists

Michael Bond: They were, yes.

Andrew Bara­nows­ki: and they were inter­est­ed in the injec­tion treat­ment management

Michael Bond: Cor­rect, yes.

Andrew Bara­nows­ki: And of course, the injec­tions have changed over the years because they were, some of the injec­tions were what we might call destruc­tive (unin­tel­li­gi­ble) treat­ments which we rarely use as spe­cif­ic indi­ca­tions in can­cer patients and spe­cif­ic indi­ca­tions for spinal pain where we use those sorts of things.

Michael Bond: The only oth­er group of peo­ple who were doing that kind of work were neu­ro­sur­geons and they did oper­a­tions for facial pain Trigem­i­nal Neu­ral­gia and they did oper­a­tions on the spinal cord for can­cer pain.

Andrew Bara­nows­ki: So, what did they think of you?

Michael Bond: I don’t know real­ly. I was at least in neu­ro­surgery at that point but they seemed to accept me with­out any hard feel­ings or I think they were quite inter­est­ed because I brought to the pro­ceed­ings a slight­ly dif­fer­ent slant. See at that time it wasn’t until 1964 that psy­chol­o­gists actu­al­ly had a clin­i­cal posi­tion in the health service.

There were psy­chol­o­gists work­ing in health ser­vice but they were doing things like intel­li­gence test­ing in men­tal hos­pi­tals and they did the thing called the Rorschach test or ink blot test where inter­pre­ta­tions were made of what patients said about what they saw in the ink blot.

I mean it was not clin­i­cal psy­chol­o­gy as we know it but then a Pro­fes­sor [Trouthouen] who was a pro­fes­sor here at Birm­ing­ham was giv­en a task of car­ry­ing out an inves­ti­ga­tion into whether or not psy­chol­o­gists should become clin­i­cal­ly trained and should work clin­i­cal­ly and the answer was, yes they should and that’s when clin­i­cal psy­chol­o­gy in Britain appeared on the scene or began to appear as a pro­fes­sion and in my depart­ment in Sheffield we had a course.

Usu­al­ly eigh­teen entrants a year of peo­ple who had a psy­chol­o­gy degree, but then came in and did a train­ing in clin­i­cal psy­chol­o­gy and that’s how it all start­ed with respect to psychology.

Andrew Bara­nows­ki: But at what point did you realise that there was more to pain that the brain was involved as much as any­thing else?

Michael Bond: Well if you think back to what I said about when I entered the depart­ment of psy­chi­a­try for train­ing and I encoun­tered those two peo­ple. [Harold Murscu] was work­ing on depres­sion and pain and had shown that 45% of peo­ple with severe depres­sion have pain. It’s part of the depres­sive ill­ness and it goes when you treat the depression.

There are oth­er peo­ple who become depressed because they have pain but these are peo­ple who devel­op pain because they are depressed. So, there was clear­ly a rela­tion­ship between mind and pain obvi­ous at that stage. The oth­er guy [Izzy Povol­s­ki] he was inter­est­ed in Hypochon­dri­a­sis, what was called ill­ness behav­iour. In oth­er words, how did pain show itself in terms of alter­ations in behav­iour and was it pos­si­ble to approach the man­age­ment of pain through analysing the behav­iour and help­ing to change that and their experiences.

So, I learnt about these con­nec­tions right at the begin­ning. Pain some­times occurs in the most extra­or­di­nary cir­cum­stances and pain that is dri­ven by psy­cho­log­i­cal fac­tors. This relates to a girl of about 20–22 and she was admit­ted to the hos­pi­tal where I was sur­gi­cal­ly train­ing and the sur­geon who admit­ted her said he didn’t think that her abdom­i­nal pain which she’d had for six months had any obvi­ous phys­i­cal cause but he want­ed to check so would I go and see her giv­en my inter­est in these things.

So, I went to see her at bed­time which is a good time to see peo­ple and they’re more relaxed then. You know I said to her, this pain you know in your stom­ach and how long has it been there? She said, “six months.” And I said, “did it start sud­den­ly?” She said, “Yes.” I said, “Well did any­thing hap­pen about that time that was sig­nif­i­cant in your life?” and she said, “Well on the day before it start­ed I went with my boyfriend to a dance. We were going to get engaged and when we were on the dance floor some­body came up to him and said I wouldn’t get engaged to her unless you know about this.”

Where upon she got hold of her love­ly red hair and locks and pulled them off and under­neath she was bald. So, some­body on the dance floor had pulled her wig off and exposed her to every­body as a bald young woman and she faint­ed and was tak­en home and the next day she had abdom­i­nal pain and every time she tried to go out of the house the pain became much worse. So, in oth­er words it was pro­tect­ing her against fur­ther expo­sure and embar­rass­ment. So, we made the con­nec­tions, also she had vir­tu­al­ly no fin­ger­nail and toe­nails. She had some abnor­mal­i­ty of the pro­duc­tion of ker­atin which makes hair and so had her mother.

Now I point­ed out, her moth­er had man­aged to mar­ry and was suc­cess­ful and so forth and this is some­thing that she will be able to get over and she did, the pain dis­ap­peared and the pain appeared where a year before she’d had an appen­dicec­to­my and some­thing else I’ve learnt about that kind of event. The pain quite often appears in a site where there has been pre­vi­ous surgery. Sug­gest­ing that there if you like there’s a mem­o­ry trace that still exists and can be lit up by psy­cho­log­i­cal factors.

Andrew Bara­nows­ki: You can see that when you do an epidur­al on some­one for labour or what­ev­er and you actu­al­ly trig­ger off a pain from pre­vi­ous surgery because again you’re manip­u­lat­ing the ner­vous sys­tem but in a com­plete­ly dif­fer­ent way. Which is a phys­i­cal way rather than a psy­cho­log­i­cal. So, the ner­vous sys­tem is quite com­plex from that point of view.

Michael Bond: Well it’s cer­tain­ly, the traces of what has hap­pened are still there quite a long time after­wards. What hap­pens in the case of the women who you were deal­ing with, is their pain dis­ap­pear again.

Andrew Bara­nows­ki: Or it can become per­sis­tent. [inaudi­ble] you can open up the path­ways [inaudi­ble] I guess once you’ve opened it up then the risk is that it rein­forces itself.

Michael Bond: Well I was a res­i­dent in Neu­ro­surgery and I was on duty one night at the hos­pi­tal and tele­phone rang and a woman cry­ing on the oth­er end and said I want to kill myself and I said “hang on you know, what’s wrong?” She said “I want to kill myself, I’ve got this ter­ri­ble pain.” I said, “Where is it?” She said, “It’s in my back and legs.” I said “Hasn’t any­body dealt with it.” She said, “Oh yes I’m attend­ing Mr so and so.” And she named one of the sur­geons and he said he’s going to do major surgery on me to deal with it, but I can’t wait any longer.

So, I arranged for her to be admit­ted and she came in and they went to bed when she came in hav­ing exam­ined her and she didn’t just have pain she was para­plegic. She arrived in a wheel­chair and she’d been like that for I think it was three or four years, any­way plus pain. So about six o’clock in the morn­ing I got a tele­phone call, would I come over to the ward.

The lady was hav­ing epilep­tic seizures and indeed she was, she was in sta­tus epilep­ti­cus and we dealt with that but it was about 36 hours before she was ful­ly (inaudi­ble). And I went to see her in the ward and said, “How are you feel­ing Mrs X.” She said, “Oh I feel rather grog­gy doc­tor, what’s been hap­pen­ing to me?” I said, “Well you’ve not been very well, but I’m pleased to say you know made a good recov­ery, how are your legs?” She had this big bed cage over her “legs. She said, “Oh there alright aren’t they.” So, I got the ward sis­ter to lift off the cov­ers and I said, “Let me see.” And she moved her legs up and down the bed and I said, “That’s very good.” The sis­ter looked aston­ished and she said, “Well why are you inter­est­ed in my legs.” And I said, “Well when you came in you couldn’t move them at all.”  She said, “Oh that wasn’t me.” I said, “You came in in a wheel­chair.” And she said “No well, I can’t remem­ber that at all.”

So, I went off and I found the sur­geon who was going to oper­ate on her and I said, “I want you to come and see some­thing.” I said, “would you like to show Mr X your legs? She said, “You’re very inter­est­ed in my legs.” I said, “we are.” So, then the same thing hap­pened, he just turned pale and walked away real­is­ing what could of hap­pened and hadn’t. So, I said, “Well that’s fine Mrs X, we’ll get the phys­ios in and you’ll get walk­ing and be fine and then said to her “Well when all this start­ed were there any real­ly seri­ous prob­lems in your life?” She said, “Well there was a big one, there was a steam­ing row.” She became para­plegic, you know it was a psy­cho­log­i­cal­ly induced paral­y­sis with pain.

Andrew Bara­nows­ki: But it’s a real paral­y­sis isn’t it, because, I mean I can tell sim­i­lar sto­ries. I can think of a patient in par­tic­u­lar who kept going to casu­al­ty with paral­y­sis and then it would get bet­ter and so she came to see me and she was fine and went to leave the hos­pi­tal and then I got a phone call say­ing this lady can’t move her legs and so on.

When I did all the reflex­es, this that and the oth­er, you know she was paral­ysed and he said, “ok. Bet­ter get her admit­ted.” But over time it became appar­ent that in this ladies case, that sever­i­ty of the pain was such that to a cer­tain extent she was dis­so­ci­at­ing from her limbs and turn­ing off the con­nec­tion and I think we can all feel like that some­times, can’t we feel like we can’t get out of bed or what­ev­er and it real­ly is just to anoth­er lev­el, so it’s a real phys­i­cal prob­lem but gen­er­at­ed from a psy­cho­log­i­cal (inaudi­ble). And I guess we also have to real­ly appre­ci­ate that these things are real­ly phys­i­cal as you allud­ed ear­li­er, about the depression.

You know depres­sion can cause pain but obvi­ous­ly those liv­ing in pain can feel as if they’re being tor­tured on a reg­u­lar basis and there­fore they’re going to become depressed and there is a strong link between think­ing about your pain, so this emo­tion­al thing which we call rumi­nat­ing and dwelling on things and depres­sion. The more you are aware of your cir­cum­stances the more like­ly you are to be depressed and one of the big risks which I’d be inter­est­ed in hav­ing your opin­ion on Michael is actu­al­ly if you treat the depres­sion you can actu­al­ly make the patients worse because you can actu­al­ly remove some­thing that is a pro­tec­tive fac­tor for them and you can remove some­thing which is actu­al­ly pro­tect­ing them from self-harm because they realise actu­al­ly my pain is bad but the depres­sion has been (inaudi­ble).

Michael Bond: Well I ran an inpa­tient pain reha­bil­i­ta­tion ser­vice for about 10 years at (inaudi­ble) hos­pi­tal. Basi­cal­ly, we had three groups of peo­ple. We had peo­ple who were not cop­ing with pain that they had left with as a con­se­quence of trau­ma of one sort or anoth­er and they came from var­i­ous depart­ments and they were on mas­sive dos­es of anal­gesics often dihydrocodeine.

The sec­ond group were those who came in with a depres­sive ill­ness and pain but no cause for pain oth­er than the fact it was part of their depres­sion and the third group of peo­ple were those who had pain which was clear­ly being, it was an inte­gral part of the way they man­aged their lives. We did well with the peo­ple who came in as a con­se­quence of their trau­ma what­ev­er that was and if they were habit­u­at­ed to dihy­drocodeine, we had a five-week with­draw­al program.

So, we would give them their reg­u­lar dose of dihy­drocodeine in cher­ry flavoured syrup and we told them that over five weeks the amount would be reduced. In fact, the last week there wouldn’t be any dihy­drocodeine at all, they didn’t know that. The most dif­fi­cult part of the whole oper­a­tion was get­ting them off the cher­ry flavoured syrup at the end. Which there was noth­ing. But we did a lot of treat­ments of that kind and the depressed group we treat­ed as depressed patients and of course obvi­ous­ly that went into the back­ground of why the depres­sion was there and why this defence mech­a­nism as you might call it was operating.

So, it required pos­si­bly psy­chother­a­py of one kind or anoth­er as well as anti­de­pres­sant ther­a­py to unlock and resolve the prob­lems. The third group, those who used pain as a way of man­ag­ing their lives were almost impos­si­ble to deal with. We nev­er got very far or if we did it was a revolv­ing door and do quite well. They go out two months lat­er, three months lat­er, they’ll be back again with the same problem.

Andrew Bara­nows­ki: We’ve been talk­ing a lot about patients as sub­jects. The third par­ty who is exam­ined and treat­ed and what­ev­er, but when did patients become impor­tant to the man­age­ment of pain?

Michael Bond: As peo­ple you mean?

Andrew Bara­nows­ki: A per­son as opposed to a patient.

Michael Bond: Good ques­tion. I sup­pose it began to appear when we decid­ed how to define pain, again going back to I think round about 1976. ISP set up a work­ing group and I was part of the group. Work steadi­ly on what the fun­da­men­tals were for the expe­ri­ence of pain and the def­i­n­i­tion came out of that as an expe­ri­ence which has phys­i­cal, psy­cho­log­i­cal and social com­po­nents. I can’t remem­ber the exact word­ing but that’s basi­cal­ly what it is, that was the essence real­ly, that def­i­n­i­tion of the change over to see­ing pain as a mul­ti-dimen­sion­al expe­ri­ence and there could be any or all of these oper­at­ing at the same time or differently.

Andrew Bara­nows­ki: And that was key to how we now assess patients. When you look at man­ag­ing your patient as a whole [inaudi­ble] and the indi­vid­ual as a whole, you’re look­ing at the effect on the social side, rela­tion­ships, the fam­i­ly, their phys­i­cal abil­i­ty to do things whether that be work or even sim­ple things like going out for walks and so on as well as the emo­tion­al effect on their thought process­es. What they think about the pain and the emo­tion­al respons­es [inaudi­ble]. And that’s where pain man­age­ment pro­grams come into this and their usu­al­ly [inaudi­ble] and patients assessed by doc­tors to make sure things aren’t being missed to give the expla­na­tion [inaudi­ble] and there run by psy­chol­o­gists, phys­io­ther­a­pists, nurses.

Michael Bond: There’s also, some­thing else to rose out of that, a def­i­n­i­tion and that was anoth­er way of mea­sur­ing pain called the [Mag­ill] Pain Ques­tion­naire and what [Ron Mel­sak] and his group in Mon­tre­al did was to analyse the words that peo­ple used to describe pain and cat­e­go­rize them into emo­tion­al, cog­ni­tive, can’t remem­ber what they all are, but, and then the strength of the words is iden­ti­fied. You might say one to ten and by build­ing up a pic­ture, a word pic­ture of the pain you can define the nature of the pain and at the end there is an ana­logue scale, an over­all one to ten mea­sure­ment, but it’s pri­mar­i­ly used for research, it’s not some­thing you use in the [Inaudi­ble].

Andrew Bara­nows­ki: So, one of the things that I believe is going to be announced soon is that [Nice] is going to take on board look­ing at guide­lines for pain med­i­cine and the British Pain Soci­ety involved in that and that would be from pri­ma­ry com­mu­ni­ty care through to spe­cialised ser­vices. [Inaudi­ble] what you say and one of the work­ing groups that we’ve set up recent­ly is look­ing at some sort of assess­ment, some sort of patient out­come mea­sure that can be used, which will be used cer­tain­ly in sec­ondary and ter­tiary care and that’s a joint project with BPS. The fac­ul­ty of Pain Med­i­cine and [Nice] have actu­al­ly [inaudi­ble] some­one to work with us on that project. That would be some sort of holis­tic mea­sure, sim­pler than [Inaudi­ble].

Paul Evans: Well let’s turn to the third mem­ber of our lit­tle [Inaudi­ble] Heather Wal­lace, you are a patient. When did you turn from being a patient to a per­son, how did you get involved with this?

Heather Wal­lace: I was… devel­oped pain when I was very young. I couldn’t even describe this pain. I just felt very strange but I was grad­u­al­ly being told that there was noth­ing wrong with me and that it was all in my mind and the prob­lem was nobody helped me. You know, I used to go home think­ing, if it’s all in my mind and I did kind of believe that because I’d been brought up to believe what your doc­tor said.

I used to lie in bed think­ing, why am I doing this to myself? I’m destroy­ing my life, why am I doing this to myself? And nobody helped me with the answer to that. Any­way, it did get quite bad and I was felt bul­lied. I can remem­ber at some point par­tic­u­lar­ly once I actu­al­ly got under… in fact it was the psy­chol­o­gist who had trained in Cana­da on the Pain Man­age­ment Pro­gram. I’d gone to him for a hyp­no­sis for my pain, he actu­al­ly said to me, “I think you’ve got nerve pain.” So that got it sort­ed and then there was this sense, nobody does that to me, how dare peo­ple treat me like that. I’m afraid it was a bit, you know, I’m going to get my own back here, but, there was no point in car­ry­ing on a sit­u­a­tion of con­flict because we couldn’t real­ly solve the prob­lem of pain and it was destroy­ing, if you didn’t get help it was destroy­ing your life. So, the solu­tion real­ly was to get doc­tors who under­stood pain, were inter­est­ed in pain, were inter­est­ed in help­ing you restore your life and patients work­ing togeth­er to real­ly just bring about change that would help patients in the long run.

Paul Evans: How rev­o­lu­tion­ary was that Andrew?

Andrew Bara­nows­ki: Well actu­al­ly when you start­ed that ques­tion before you actu­al­ly specif­i­cal­ly asked Heather. I was think­ing to myself, well I sort of was a junior doc­tor in 1984 and that’s when I got involved with pain and I was think­ing well, as far as I was con­cerned I was always work­ing with indi­vid­u­als liv­ing with pain. Although that ter­mi­nol­o­gy has become much more com­mon now as a doc­tor and the rea­son I got involved because I was work­ing on the chest can­cer wards and slow­ly [inaudi­ble] just being devel­oped and it was inter­est­ing with peo­ple didn’t real­ly know how to use the med­ica­tion and things haven’t changed much in some ways.

That’s why I got involved because I said well actu­al­ly we’ve got peo­ple here liv­ing with pain. There’s a par­tic­u­lar group of peo­ple who were poten­tial­ly dying in pain as well and so for me, I’ve always seen it in that way but if you look at how things are talked about now days, there is a much stronger group and that’s what the British Pain Soci­ety rep­re­sents is the mul­ti­dis­ci­pli­nary pain teams and is the only soci­ety that has the man­date to do that, because actu­al­ly our mem­ber­ship is of psy­chol­o­gists that you’ve allud­ed to as well as pain man­age­ment phys­io­ther­a­pists which help with the phys­i­cal dis­abil­i­ty side of it as well as the pain [inaudi­ble], we work as a group and I did my MD the­sis and my research [inaudi­ble], in fact the his­to­ry from when Sir Michael was telling his sto­ry, I was sort of being locked into the next stage real­ly which was under­stand­ing the neu­ro­log­i­cal mech­a­nisms for why peo­ple like Heather have nerve pain and why when you do an epidur­al why the psy­cho­log­i­cal things switch on these pain mem­o­ries and so on.

So, that was the research and that was in the 1990’s, so, hav­ing trained as anaes­thetist. Which was the only way to become a pain doc­tor, guar­an­teed was you had to train as an anaes­thetist. So, I did all my high­er qual­i­fi­ca­tions, anaes­the­sia and then after about four years of being a con­sul­tant I gave up anaes­thet­ics and became full time in pain med­i­cine and then from an ear­ly stage I was a part of the British Pain Soci­ety. I can remem­ber the first meet­ing, so, I was always involved in that cul­ture of work­ing with peo­ple liv­ing with pain rather than peo­ple we treat with pain.

Michael Bond: There is an inter­est­ing point that came to mind about pain, what is pain? And most peo­ple say it is a symp­tom of some­thing, but, there was a big argu­ment in the ear­ly 1990’s that went on right up to WHO about pain as an ill­ness. Pain itself can be an ill­ness, WHO wouldn’t accept that for a long time, even­tu­al­ly they did. So, it is now accept­ed that pain need not be a symp­tom of some­thing else. It can arise [Inaudi­ble] as real­ly a mal­func­tion of the ner­vous sys­tem, if you like, in one way or anoth­er. You might say well it’s just a symp­tom of the mal­func­tion of a sys­tem. But, that’s not quite real­ly what it means.

Paul Evans: Heather as a per­son with pain and dri­ving force of Pain Con­cern what dif­fer­ence would that make?

Heather Wal­lace: Well, you’ve got some­thing real, so it helps counter that dis­be­lief because when you’re pro­duc­ing pain and you haven’t got the tumour or what­ev­er the doc­tor can see and inves­ti­gate then you’re rather left won­der­ing what’s wrong with you. So, I think it’s about being believed and also being able to come to terms and to a sense of peace that you don’t have to be search­ing for a diag­noses any­more and that’s real­ly help­ful because that allows you the ener­gy to actu­al­ly start deal­ing with the prob­lem that you’ve got liv­ing with what’s effec­tive and you have to learn it’s incur­able and I think that’s anoth­er stage of dif­fi­cul­ty, but at least you know what you’ve got to deal with.

Michael Bond: I think one of the points real­ly comes out of those com­ments is that often patients would turn up at turn up at the clin­ic say­ing and peo­ple say it’s all in my head. What’s real­ly wrong, it’s real­ly not a diag­no­sis. It’s a doc­tor who doesn’t real­ly under­stand what we’ve just been talk­ing about, that is that the pain could be a dis­or­der in its own right. I don’t think that has com­plete­ly fil­tered through. It takes me on anoth­er step to an issue that we have still to solve and that’s the teach­ing of med­ical stu­dents about pain. I think they are still very poor­ly educated.

Andrew Bara­nows­ki: The Fac­ul­ty of Pain Med­i­cine which is part of the Roy­al Col­lege [Inaudi­ble], they have this, they now have [Inaudi­ble] into a num­ber of uni­ver­si­ties, where they’re edu­cat­ing stu­dents, but the gen­er­al sort of quote is that actu­al­ly med­ical stu­dents get less train­ing in pain med­i­cine than vets do.

Michael Bond: Yes, that’s right. It’s true.

Andrew Bara­nows­ki: I think that is chang­ing, but, build­ing on what Heather has said as well, I think pro­vid­ing the patient is open to it. One of the most reward­ing things that they find, by com­ing to a clin­ic such as the one I run, is actu­al­ly an expla­na­tion and we can explain and some­times yes you have to say, I don’t under­stand that, but, actu­al­ly some real­ly weird and won­der­ful symp­toms that patients have, you can quite often explain them in terms of the func­tion of the ner­vous system.

So, if you look at asso­ci­a­tions and con­di­tions, patients with blad­der pain syn­drome often have wide­spread mus­cu­lar [Inaudi­ble] type symp­toms. They also have weird things like low thy­roid func­tion and dry eyes which are relat­ed to, because the ner­vous sys­tem con­trols the immune sys­tems. So, they get auto immune dis­or­der type prob­lems which cause strange sen­sa­tions which are noth­ing to do with the main focus the pain which may be in [Inaudi­ble] and so on are actu­al­ly, you know when I start­ed as a con­sul­tant and I was asked to see pelvic pain patients, I could under­stand all these weird and won­der­ful things. I’d say to patients, “well actu­al­ly you’re not as crazy as you think.” So that’s some of these things actu­al­ly do have a basis and where as maybe I can’t explain every­thing, I can explain a lot of things which oth­er doc­tors have actu­al­ly labelled you in some way as being a…

Michael Bond: Labelled is the word.

Andrew Bara­nows­ki: I hate labels.

Michael Bond: And you have real­ly, from what you have said, point­ed that out.

Heather Wal­lace: Yes.

Michael Bond: That’s how you were treat­ed for.

Heather Wal­lace: Oh, yes.

Michael Bond: It’s quite a long time.

Heather Wal­lace: It was so destruc­tive for me because, you know, that self-doubt, self-blame. It was quite a bur­den for me and there was no answer and you had to… because I was young with pain, you soon learnt you lost your friends if you moaned about this. So, you were real­ly stuck.

Andrew Bara­nows­ki: Fol­low­ing on from that, the World Health Author­i­ty, they’re now look­ing at their clas­si­fi­ca­tion sys­tem and in the ICD 11 are next clas­si­fi­ca­tion sys­tem. There will be pain as a con­di­tion in the clas­si­fi­ca­tion. So, we’ll now be sep­a­rate to that. The oth­er thing which I some­times upset my neu­rol­o­gist with, which is explain what you’re talk­ing about as pain as a symp­tom ver­sus pain as a condition.

Com­ing back to your sto­ry about the epilep­tic in a sense. Epilep­sy is a con­di­tion and fit­ting, even though my neu­rol­o­gist doesn’t like the term, fit­ting is like the symp­tom as it were and you can imme­di­ate­ly see that there are two things. But, the prob­lem with pain, is pain the term can describe a symp­tom and it can describe the con­di­tion and that’s been one of the prob­lems. I don’t think there’s any­way around that. I can’t think of a dif­fer­ent term that we would use.

So, we’re slight­ly stuck with that. But, we need to sep­a­rate them out in the same way as you might say were an epilep­tic fit, the fit­ting is the symp­tom, where as the con­di­tion is epilep­sy and in some cas­es there maybe under­ly­ing cause like a tumour. Like you can under­stand in anoth­er case is the epilep­sy maybe a neu­ro­log­i­cal func­tion­al disorder.

Michael Bond: Just going back to the lady who had seizures or fits. The rea­son she had them was because we didn’t realise that she was tak­ing large dos­es of bar­bi­tu­rates and she didn’t get any­way and she was admit­ted and it was in effect, the fits were a symp­tom of bar­bi­tu­rate withdrawal.

Andrew Bara­nows­ki: And that again rais­es the issue about the harm that we can do by treat­ing the symp­tom, rather than treat­ing the patient as a whole. So, we’re now obvi­ous­ly going into these areas where a lot of the things are patients that have com­plained about a lot of the symp­toms that actu­al­ly gen­er­at­ed by the inter­ven­tion, where they’ve been med­ical­ly inter­ven­tion or what­ev­er. I think all inter­ven­tions; even psy­cho­log­i­cal ones have risks that we need to be aware of.

Michael Bond: Well you’re chang­ing the sys­tem, with psy­cho­log­i­cal treat­ment your chang­ing the sys­tem deliberately.

Paul Evans: So, what we were say­ing is that the patient, the per­son with pain is so impor­tant, what involve­ment does a per­son in pain have with­in the sys­tem if you like.

Andrew Bara­nows­ki: So, there’s cer­tain sep­a­rate patient agen­cies, but, then with­in the British Pain Soci­ety we have the patient liai­son com­mit­tee and I think what is sig­nif­i­cant about that is also been the patient ref­er­ence groups we’re linked into some six oth­er indi­vid­u­als. So, that group can help inform the pro­fes­sion­als and per­haps Heather would like to talk a bit about her expe­ri­ence in that.

Heather Wal­lace: Well, it was Sir Michael who took the ini­tia­tive to say you’d like the soci­ety to look into set­ting up a patient liai­son group. So, I think we spent quite a few months work­ing on that. I can’t remem­ber [inaudi­ble]

Michael Bond: Mrs [Gaf­fin] became the first chairman.

Heather Wal­lace: And indeed I still worked with her, she’s a trustee now, of Pain Con­cern So, we’ve formed a long con­tin­u­ous rela­tion­ship and in the ini­tial days we had to tread very care­ful­ly because we were break­ing new ground and a lot of health care pro­fes­sion­als did not feel that there was a role for patients with­in a pro­fes­sion­al soci­ety and I think we suc­ceed­ed in that because we wouldn’t not to threat­en­ing that was what we aimed to achieve so that we would become accept­ed and that has hap­pened and I think now, the soci­ety would sim­ply not be without.

Andrew Bara­nows­ki: [Inaudi­ble] And in fact I would like, I’ve got my own ideas about fur­ther devel­op­ing that and I don’t know Heather if you’ve got any thoughts that you’d like to give me, any sug­ges­tions about how you feel that patients should be more involved.

Heather Wal­lace: I think clos­er coop­er­a­tion, I think pain world is so small and so vul­ner­a­ble, com­pared to the big con­di­tions, can­cer and what nots out there, which are very wor­thy, very impor­tant, but, pain is also impor­tant to people’s qual­i­ty of life and I think it is that qual­i­ty of life we’re try­ing to restore. So, com­ing togeth­er will make us more powerful.

Andrew Bara­nows­ki: But, I think also you’re slight­ly belit­tling or down­grad­ing the lev­el, the prob­lem because, you know the nation­al pain [inaudi­ble] that liv­ing with pain, your qual­i­ty of life can be worse, not every­one, but, can be worse than liv­ing with any oth­er con­di­tion and if we also take on board actu­al­ly about half the pop­u­la­tion over the age of 50, have chron­ic or pain, per­sis­tent pain last­ing for more than three months at a time.

Then, actu­al­ly it’s a big prob­lem, but, it is not maybe if I dare use the word, as sexy as some of the more emo­tive type of things. One of the things has been sug­gest­ed and I’ve been dwelling about and may hap­pen due to my pres­i­den­cy, depend­ing on oth­er people’s views and pol­i­tics would be to expand the [Inaudi­ble] group to maybe friends of the British Pain Society.

Change that ter­mi­nol­o­gy would be that you would have the pro­fes­sion­al sec­tion but then you would have the friends of the soci­ety as well as the patient liai­son com­mit­tee which would be the direct body respon­si­ble for coor­di­nat­ing the view­point of the patients. I’m slight­ly look­ing at maybe strength­en­ing the rela­tion­ship with the patients and maybe it’s quite nice to have to have in this room both Sir Michael and myself and yourself.

Heather Wal­lace: I think pol­i­cy needs to be strength­ened and that’s where you do need to bring peo­ple togeth­er but there is chron­ic pain pol­i­cy coali­tion real­ly has a real­ly impor­tant role to play in this and get­ting par­lia­men­tar­i­ans on board, get­ting the Depart­ment of Health on board and get­ting clin­i­cal guide­lines adopt­ed per­haps vol­un­tar­i­ly but just manda­to­ry, this is how you treat pain.

Andrew Bara­nows­ki: I strong­ly agree with you, that’s why we set up the coali­tion which is a group, we meet every four, five times a year. Which is the Chron­ic Pain Pol­i­cy Coali­tion, the Fac­ul­ty of Pain Med­i­cine of the Roy­al Col­lege Anaes­thetists, The British Pain Soci­ety and because of its… the pol­i­tics around it, the [Inaudi­ble] group is co-opt­ed to that. Patients on that have been rep­re­sent­ed through the BPS and they’re ongo­ing con­ver­sa­tions as to whether or not they should be a direct patient agency on that oth­er than through the BPS at the moment and there is an argu­ment for strength in that I think because you say work­ing togeth­er is key, if we’re frag­ment­ed then we won’t survive.

Paul Evans: I’m very con­scious of the time. Can we just fin­ish off, first­ly con­grat­u­la­tions on 50 years of The British Pain Soci­ety. I think we know where you start­ed and where you are now, well where we are now because patients are per­sons with pain and we’re part of the team. Where would we like to be in the future?

Andrew Bara­nows­ki: I think one of my dri­ving forces before I became pres­i­dent of this soci­ety, I was chair of The Clin­i­cal Ref­er­ence Group for NHS spe­cialised ser­vices and quite aware that there’s a [dirth] of ser­vices but we’re also aware that hos­pi­tals can­not pro­vide, if you look into… take into account the instance of pain and the fig­ures vary but suf­fer­ing from pain is quite sig­nif­i­cant. There’s no way hos­pi­tals will be able to take on board all of that, so it comes back to the edu­ca­tion is key. So, it real­ly is impor­tant that we edu­cate all med­ical pro­fes­sion­als into the com­plex dynam­ics of liv­ing with pain and then to look at net­works of ser­vices and that was my real dri­ving force when I was chair of the Clin­i­cal Ref­er­ence Group, was I envis­aged that we would have in Eng­land [Inaudi­ble] we’d have maybe six spe­cialised ser­vices or 12 spe­cialised ser­vices, which would work with Dis­trict Gen­er­al Hos­pi­tal Ser­vices, which would work with com­mu­ni­ty ser­vices and we would have a true network.

So, what I would like to see in the next ten years because I think it’s cer­tain­ly doable in ten years, but it may take 25 or 50 years, is that you have a net­work of ser­vices so that the per­son liv­ing in pain has some­one to turn to, they see the right per­son at the right time, in the right place, so it should be local where pos­si­ble but obvi­ous­ly the more com­plex patients may need to go to the more spe­cialised ser­vices. So, in terms of the future for pro­vi­sion of ser­vices, that’s what I think needs to hap­pen. Much wider edu­ca­tion and a much wider abil­i­ty for the pri­ma­ry com­mu­ni­ty care ser­vices to sup­port patients.

Michael Bond: I know that the oth­er dimen­sion is of course edu­cat­ing the pub­lic which is what Pain Con­cern is all about. They need to be edu­cat­ed over and above the doctors.

Andrew Bara­nows­ki: So, that brings us to the British Pain Soci­ety in a sense and when I became pres­i­dent, with all the prob­lems that the soci­ety is nav­i­gat­ing at the moment, which we’re also nav­i­gat­ing in one way or the oth­er with cur­rent pol­i­tics, is what is the role of soci­ety and we’ve looked at our val­ues, we’ve looked at our man­date and so on and I think rais­ing aware­ness of pain, [Inaudi­ble] the big thing that we’re launch­ing at this 50th anniver­sary is our nation­al aware­ness cam­paign and we’ve had a num­ber of meet­ings about that, it’s tak­en three or four years to get to where we are.

At the moment we’ve now got the posters which I hope that all those liv­ing with pain will share on social media to raise the aware­ness. Each poster has a poignant point. It sort of makes it clear state­ment about some­thing to do with a liv­ing, suf­fer­ing of chron­ic pain and so on and it cov­ers war vet­er­ans, it cov­ers women, it cov­ers chil­dren, it cov­ers all eth­nic­i­ties and spe­cif­ic prob­lems and so on and that will develop.

So, that will be a part of our edu­ca­tion prob­lem, rais­ing aware­ness but also on the back that we’re rais­ing aware­ness of what the British Pain Soci­ety does through its mem­ber­ship so the British Pain Soci­ety sup­ports its mem­bers, to actu­al­ly pro­vide ser­vices for those liv­ing with pain. There’s no doubt we have to accept that we need to have finan­cial respon­si­bil­i­ty now days and so I’m hop­ing that that aware­ness cam­paign will also bring in more mon­ey because the British Pain Soci­ety has done over the past 10, 20 years par­tic­u­lar­ly and Sir Michael Bond has been involved more recent­ly than when he was pres­i­dent orig­i­nal­ly and see’s the huge amount of work that’s now done with gov­ern­ment, with [Nice], with Roy­al Col­leges, with patient sup­port groups.

All of which we can’t do with­out mon­ey and indus­try is shrink­ing in terms of what it’s pro­vid­ing and so, where would I like to see the British Pain Soci­ety. I’d like to see inde­pen­dent of indus­try, finan­cial­ly so that we can act with finan­cial sta­bil­i­ty through rais­ing aware­ness of what we do to sup­port liv­ing with pain. So that we’re in a posi­tion to actu­al­ly con­tin­ue draw­ing up guide­lines, steer­ing agen­cies such as [Nice] and the gov­ern­ment and so on to try and pro­vide that net­work of ser­vices that sort of sup­port which patients need.

Heather Wal­lace: Pub­lic aware­ness is real­ly impor­tant, I mean there has been ini­tia­tive and indeed there was a dec­la­ra­tion in Mon­tre­al a few years ago. That pain treat­ment, pain assess­ment and treat­ment is actu­al­ly a basic human right.

Michael Bond: That’s right.

Heather Wal­lace: And it would be won­der­ful to have that cul­ture through­out and indeed the focus from treat­ing the com­plex pain patient, to actu­al­ly mov­ing towards pre­ven­tion of that occur­ring in the first place and I think sci­ence is mov­ing that way, not con­vinced you’re there yet.

Andrew Bara­nows­ki: Only an edu­ca­tion and under­stand­ing will pre­vent a lot of [Inaudi­ble] and one of the things that was inter­est­ing when I was chair of the Clin­i­cal Ref­er­ence Group is that we man­aged to get pain man­age­ment as being a cor­ner­stone ser­vice, there­fore if you have a spe­cialised ser­vices for kid­neys or brains or what­ev­er it may be, you can’t have a ser­vice with­out a pain ser­vice linked to you, but, I agree com­plete­ly with Heather, is that the more that we sort of [Inaudi­ble] away at this, the more like­ly we can pre­vent [Inaudi­ble] by actu­al­ly pro­vid­ing ear­li­er support.

Michael Bond: And that is becom­ing increas­ing­ly rel­e­vant as one of them, the pop­u­la­tion grows old­er because there are increas­ing infir­mi­ties of all kinds amongst the elder­ly and if we can antic­i­pate some of those, we may be able to reduce them.


Con­trib­u­tors:

  • Dr Andrew Bara­nows­ki, British Pain Soci­ety President
  • Pro­fes­sor Sir Michael Bond, found­ing mem­ber and for­mer pres­i­dent of the BPS
  • Heather Wal­lace, Pain Con­cern Chair and BPS hon­orary member.

More infor­ma­tion:

https://painconcern.org.uk/cordless-car-vacuum-cleaner-eraclean-best-handheld-vacuum/