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Transcript – Programme 1: Introduction To Pain

What is chron­ic pain and how can we man­age it? We talk to health pro­fes­sion­als and patients to find out more

To lis­ten to this pro­gramme, please click here.

In this first Air­ing Pain pro­gramme we intro­duce the sub­ject of pain and its man­age­ment with con­trib­u­tors with a vari­ety of exper­tise and expe­ri­ence. Pro­fes­sors Blair Smith and Richard Lang­ford take us through the caus­es of chron­ic pain and con­di­tions asso­ci­at­ed with it, while Sher­rill Snel­grove and Kiera Jones talk about the chal­lenges faced by patients in being under­stood by the health pro­fes­sions. Dr Bev­er­ly Col­lett explains the impor­tance of the patient’s own under­stand­ing in man­ag­ing their con­di­tion and keep­ing active.

We also fea­ture short inter­views with some of the experts we’ll hear more from in lat­er pro­grammes: Pro­fes­sor David Walsh dis­cuss­es the impor­tance of mul­ti­dis­ci­pli­nary approach­es in help­ing patients to man­age their pain, Pro­fes­sor Nick Alcott and Claire Rayn­er encour­age old­er peo­ple to get help with their pain and Nicole Tang talks about how peo­ple with pain can improve their sleep, and final­ly, Pete Moore give some words of encour­age­ment based on his own expe­ri­ence of learn­ing to live well with pain.

Issues cov­ered in this pro­gramme include: Ache, arthri­tis, back pain, com­mu­ni­ca­tion, com­pas­sion, describing/explaining pain, health pro­fes­sion­als, injury, insom­nia, iso­la­tion, limbs, mea­sur­ing pain, mis­con­cep­tions, mul­ti­dis­ci­pli­nary, mus­cu­loskele­tal, neck pain, neu­ro­path­ic pain, no vis­i­ble cause, old age, patients, peer sup­port, pri­ma­ry care, pro­grammes, sec­ondary care and therapy.

Lionel Kelle­way: Hel­lo, and wel­come to Air­ing Pain, a pro­gramme brought to you by Pain Con­cern, a UK char­i­ty that pro­vides infor­ma­tion and sup­port for peo­ple who live with pain – peo­ple like me, Lionel Kelle­way – and for those who care for and about us.

Dr Bev­er­ly Col­lett: There are 7.8 mil­lion peo­ple in the UK with chron­ic pain. That means one per­son in every four house­holds has chron­ic pain.

Kelle­way: Each fort­night in Air­ing Pain, we’ll look at the top­ics that affect us.

Dr Sher­rill Snel­grove: There are reports from patients that they’re not under­stood very often and they feel they are giv­en a low pri­or­i­ty in the health services.

Kiera Jones: I’ve been through the whole rig­ma­role of doc­tors, spe­cial­ists, and hav­ing MRI scans, x‑rays, ultra­sound scans, the lot.

Kelle­way: And we’ll look at how deal­ing with pain on a day-to-day basis affects the way we live.

Dr David Laird: On a good day, we want to do things. We want to achieve things. That means that we over­reach. We’re over­ac­tive. We want to live our lives with­out the pain inter­fer­ing. And that’s part of the whole aspect of the loss that pain induces.

Kelle­way: We’ll look at the cop­ing mech­a­nisms, med­ical inter­ven­tions and ther­a­pies that might help us regain con­trol of our lives.

Dr Steve Allen: More and more, we’re begin­ning to under­stand what goes wrong with peo­ple who have pain and, more and more, we can do some­thing to fix that.

Kelle­way: And just to prove that you can live with pain and keep smiling…

Claire Rayn­er: One sum­mer night, I had gone to bed ear­ly. I was lying in bed, stretched out stark­ers, read­ing glass­es on the end of my nose. My hus­band comes in. He stands beside the bed, and he says: ‘Look at you – you’ve got arti­fi­cial shoul­ders, arti­fi­cial knees, you’ve got a hear­ing aid, you’ve got a pace­mak­er, you’ve got glass­es – I don’t know whether to plug in or switch off!’

Kelle­way: More from Pain Concern’s patron Claire Rayn­er lat­er in the pro­gramme. But first, a few words about Air­ing Pain. This is the first in a fort­night­ly series of pro­grammes pro­duced by Pain Con­cern, a UK char­i­ty that pro­vides infor­ma­tion and sup­port for peo­ple who live with pain. So those are the peo­ple we are mak­ing the pro­gramme for, along with our fam­i­lies, friends, car­ers, and sup­port­ers, but also for health pro­fes­sion­als who either wish to have a bet­ter under­stand­ing of those suf­fer­ing pain con­di­tions, or the experts who wish to hear and share their views and strate­gies with col­leagues and patients.

But first a word of cau­tion, that whilst we believe the infor­ma­tion and opin­ions on Air­ing Pain are accu­rate and sound, based on the best judg­ments avail­able, you should always con­sult your health pro­fes­sion­al on any mat­ter relat­ing to your health and 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.

In this, the first edi­tion of Air­ing Pain, I’ll give you a taster of some areas we’ll be cov­er­ing over the com­ing months. But we’ll start at the very begin­ning. What is pain?

Well, there are two broad cat­e­gories: acute pain – that is, the pain that gets bet­ter, for instance, from a bro­ken leg. It hurts, but as the body heals the injury, so the pain dimin­ish­es. Or so it should diminish.

And then there’s chron­ic pain.

Prof Blair Smith: By def­i­n­i­tion, chron­ic pain is pain that has last­ed beyond the time that the body should have healed, so chron­ic in this sense means: ‘long-last­ing’ – noth­ing to do with sever­i­ty. So it is in itself, by def­i­n­i­tion, an illness.

Kelle­way: Pro­fes­sor Blair Smith is Pro­fes­sor of Pri­ma­ry Care Med­i­cine at the Uni­ver­si­ty of Aberdeen. So how many peo­ple does this affect and what caus­es it?

Smith: Depend­ing on how you define chron­ic pain, at its loos­est def­i­n­i­tion, up to half of the pop­u­la­tion actu­al­ly have chron­ic pain. But at a more strin­gent def­i­n­i­tion, at the most severe end, about one in twen­ty peo­ple have chron­ic pain. Peo­ple who have this lev­el of sever­i­ty talk about pain being the over­rid­ing fea­ture in their dai­ly life and it tends to be… more like­ly to be women and more like­ly to be old­er peo­ple or peo­ple with oth­er health prob­lems. But of all peo­ple with chron­ic pain, it is maybe about a third of peo­ple who have chron­ic back pain, a third maybe have arthri­tis and a third have pain caused by oth­er ill­ness­es or diseases.

Often, we don’t know the ulti­mate cause of pain. Some­times it’s obvi­ous, like an oper­a­tion or an injury. Some­times it’s a dis­ease that we can diag­nose. Actu­al­ly, very often, it’s some­thing else that is hap­pen­ing to the ner­vous sys­tem. In neu­ro­path­ic pain, there are abnor­mal sig­nals being sent through the ner­vous sys­tem up to the brain, and it caus­es a par­tic­u­lar­ly unpleas­ant sen­sa­tion which is there all the time.

Kelle­way: Pro­fes­sor Blair Smith of Aberdeen Uni­ver­si­ty. And neu­ro­path­ic pain is a sub­ject we’ll be return­ing to in greater depth in a lat­er edi­tion of Air­ing Pain. The idea of pain as an ill­ness in its own right, rather than as a result of some oth­er injury, has not always been tak­en seri­ous­ly and, indeed, there are still pock­ets of igno­rance, not just in the med­ical pro­fes­sion but in the com­mu­ni­ty at large.

Pro­fes­sor Richard Lang­ford is a con­sul­tant in anaes­the­sia and pain man­age­ment, and is pres­i­dent of the British Pain Society.

Prof Richard Lang­ford: Some­times because you can’t see that there is a dis­eased part – there’s noth­ing that looks inflamed or bro­ken or has recent­ly been oper­at­ed on – you can look at the arm or the leg or the abdomen or the chest or what­ev­er and it looks, to all intents and pur­pos­es, nor­mal. Even inves­ti­ga­tions may be pret­ty nor­mal. It can, there­fore, seem a bit of a mys­tery as to why some­body still com­plains of pain. Some­times some­body can have a pret­ty bad-look­ing x‑ray of their spine, for exam­ple, and they have no pain at all. In oth­er peo­ple, you strug­gle to find an anatom­i­cal defect, and yet, they have real­ly debil­i­tat­ing pain.

So I think there is an under­stand­ing now that there are var­i­ous ways that pain is gen­er­at­ed. The bio­log­i­cal mech­a­nisms: when nerves may be trapped or fir­ing pain sig­nals spon­ta­neous­ly, not in rela­tion to an injury but just because they’re dis­eased nerves. On oth­er occa­sions, you may have actu­al anatom­i­cal defects.

And so there’s this whole spec­trum. There’s pain that can well be gen­er­at­ed or cer­tain­ly ampli­fied by psy­cho­log­i­cal mech­a­nisms. We know that low states of mood, depres­sion etc. – anx­i­ety states – wors­en pain. This isn’t some­thing which one should be unsym­pa­thet­ic about – tell them just pull them­selves togeth­er – because actu­al­ly these are work­ing at a lev­el below the con­scious lev­el. This isn’t in any way wil­ful. This lev­el of under­stand­ing has been great­ly increas­ing amongst pro­fes­sion­als and, indeed, the fact that those patients then respond to var­i­ous types of therapy.

Kelle­way: Pro­fes­sor Richard Lang­ford, Pres­i­dent of the British Pain Society.

One of the many dif­fi­cul­ties that chron­ic pain suf­fer­ers seem to share is how to describe their pain to their doc­tors and to feel believed by them. Sher­rill Snel­grove teach­es psy­chol­o­gy, includ­ing com­mu­ni­ca­tion skills and the man­age­ment of chron­ic con­di­tions, to under­grad­u­ates and grad­u­ates from a range of health-relat­ed back­grounds. She is also a reg­is­tered nurse and a mem­ber of the Welsh Pain Society.

Snel­grove: Patients want health pro­fes­sion­als to under­stand what they’re going through more than any­thing else and to believe them. So why do peo­ple per­haps not believe or are skep­ti­cal about peo­ple with chron­ic pain? Pain of any sort is very often dif­fi­cult to artic­u­late, the type of pain you’re in, and that may be a cause for mis­un­der­stand­ing very often.

I think that also it’s to do with the approach that health pro­fes­sion­als may have to chron­ic pain, now their own per­spec­tive of chron­ic pain. For instance, if a health pro­fes­sion­al has a view of chron­ic pain as being main­ly a bio­me­chan­i­cal dys­func­tion, they’re not going to con­sid­er people’s feel­ings, their beliefs, or the wider social con­text in which the per­son resides, their lives, and how that impacts on the pain. It’s part­ly, as well, to do with the fact that it is invis­i­ble. The only way you’re going to under­stand what people’s pain is, is by lis­ten­ing to what they say. Pain is what the patient says it is. And I think that’s a good basis to work from.

Jones: If some­one says they are in pain, they are in pain – they are hurt­ing, they are suf­fer­ing. Just because you can’t see some­thing, it doesn’t mean it isn’t real. Some peo­ple seem to think that if there’s no phys­i­cal prob­lem, if you can’t see that I’ve got a plas­ter cast on or miss­ing a limb or some­thing like that, they don’t think that there can be any pain – there’s no vis­i­ble cause, so it’s not real. I think the worst thing that I’ve had was actu­al­ly from a nurse. I went to a walk-in cen­tre for a dif­fer­ent prob­lem and the nurse was just say­ing to me: ‘Well, why don’t you go and get a job?’ Imply­ing I was just some lazy scrounger who was sit­ting around not doing a great deal out of choice.

Kelle­way: That was Kiera Jones, and we’ll be broad­cast­ing an edi­tion of Air­ing Pain on the sub­ject of how best to com­mu­ni­cate with your health pro­fes­sion­als and how best for them to com­mu­ni­cate with you in a future program.

You’re lis­ten­ing to Air­ing Pain, pre­sent­ed this week by me, Lionel Kelle­way, and brought to you by Pain Con­cern, the UK char­i­ty pro­vid­ing infor­ma­tion and sup­port for peo­ple who live with pain and for those who care for and about us.

Col­lett: We should be try­ing to encour­age GPs to mea­sure pain.

Kelle­way: Dr Bev­er­ly Col­lett is a con­sul­tant in pain med­i­cine and an assis­tant med­ical direc­tor in the pain man­age­ment ser­vice at the Uni­ver­si­ty Hos­pi­tals of Leices­ter. Amongst many oth­er posi­tions held in pro­fes­sion­al pain man­age­ment, she is past Pres­i­dent of the British Pain Soci­ety and Chair of the Chron­ic Pain Pol­i­cy Coalition.

Col­lett: One of the things that the Chron­ic Pain Pol­i­cy Coali­tion is try­ing to encour­age is to get pain recog­nised as the fifth vital sign in the UK. And what we want to do is we want to do this not only in hos­pi­tals, but also in pri­ma­ry care, so that if you go along to your GP with a pain prob­lem, he will not say: ‘How bad is your pain? Okay. Take these painkillers and come back in a month.’ He will mea­sure your pain so you can give him an accu­rate answer as to how severe your pain is. Then, when you go back for a fol­low-up vis­it, he can ask you again and see if your pain has dimin­ished in any way.

The oth­er thing that we want to encour­age GPs to do is edu­cate peo­ple about their pain and to realise that often, with per­sis­tent pain, hurt does not mean harm, i.e. you will not do your­self any dam­age if you main­tain your func­tion­al­i­ty. We know that, actu­al­ly, peo­ple often get worse if they do not remain active.

I think that the oth­er thing we want to do is to encour­age close rela­tion­ships between pri­ma­ry and sec­ondary care so that some of the tech­niques that we offer patients today in sec­ondary care can be offered in pri­ma­ry care, espe­cial­ly so that we can edu­cate patients using some self-man­age­ment tech­niques, using book­lets such as The Pain Toolk­it, which helps peo­ple to man­age their own pain at an ear­li­er stage. No, you don’t need these rel­a­tive­ly sim­ple inter­ven­tions when you’ve had pain for four years. You need them right at the begin­ning of their pain.

Kelle­way: That’s Dr Bev­er­ly Col­lett, Chair of the Chron­ic Pain Pol­i­cy Coalition.

We’ve already heard that ‘chron­ic’, as in ‘chron­ic pain’, describes the longevi­ty of the pain rather than its sever­i­ty, although by no means, as many of us can tes­ti­fy, does that mean that the chron­ic pain can­not also be severe. So what approach does a spe­cial­ist in pain man­age­ment fol­low if, as we’ve heard, he or she may not be able to cure us?

Dr Steve Allen is a con­sul­tant in chron­ic pain man­age­ment based at the Roy­al Berk­shire Hos­pi­tal in Reading.

Allen: You can’t be a good pain doc­tor with­out, I think, being a mix­ture of being very empa­thet­ic – not sym­pa­thet­ic; patients don’t want sym­pa­thy, they need empa­thy – you also have to be a lit­tle bit hard. I will have to tell you that I’m nev­er going to make you any bet­ter. I’m going to have to tell you that you’re going to have to live with some pain for the rest of your life. That’s real­ly hard, and you need to be a bit com­pas­sion­ate to do that.

Kelle­way: So is there a pat­tern to the con­di­tions that get referred to Steve Allen’s pain clin­ic and how suc­cess­ful is he in treat­ing those conditions?

Allen: There’s no doubt that mus­cu­loskele­tal pain is the most com­mon thing that’s referred to a pain clin­ic – back pain, neck pain – huge, huge prob­lem. What is it – 1.5 mil­lion peo­ple a year are diag­nosed with back pain? Some­thing like that. Now many of those end up with us at a pain clin­ic. And I would have thought that most people’s clin­ics – fifty per cent, at least, of patients that we see – will have mus­cu­loskele­tal pain, prob­a­bly more.

How suc­cess­ful are we at treat­ing the pain? I think – if I’m going to be hon­est – fifty per cent of the patients I see, I can make no bet­ter than when they first came in, irre­spec­tive of what we’ve done. Around about twen­ty per cent are made mod­er­ate­ly bet­ter, twen­ty per cent made very much bet­ter and occa­sion­al­ly cured and per­haps five or ten per cent are actu­al­ly worse off.

Now that’s not a reflec­tion of me being a bad doc­tor – well, I hope it’s not – but it is a reflec­tion of how dif­fi­cult the syn­drome of chron­ic pain is. That it is some­thing which changes from one day to anoth­er, from one week to anoth­er, and that very often is not just the fact that the phys­i­cal things have changed – as indeed they may do – but it’s also a reflec­tion of the very com­plex nature of everybody’s life and the psy­choso­cial fac­tors that are involved.

If one of our patients comes in and says: ‘Dr Allen, I’m so much worse off than the last month’. Rather than imme­di­ate­ly reach­ing for my x‑ray pad or what­ev­er and charg­ing huge amounts on inves­ti­ga­tions, my first ques­tion is: ‘What’s changed in your life?’ Because if you’re not cop­ing well with the rest of your life, because of extra stress­es, then of course you’re not going to cope with the pain either.

Prof David Walsh: All these chron­ic con­di­tions, which cause pain for long peri­ods of time, have psy­cho­log­i­cal impact, and some­times we can’t nec­es­sar­i­ly cure the under­ly­ing prob­lem. But we can often help peo­ple to live with that prob­lem and yet to be able to pur­sue those things that they val­ue in their life.

Kelle­way: That’s Pro­fes­sor David Walsh, Asso­ciate Pro­fes­sor in Rheuma­tol­ogy at the Uni­ver­si­ty of Not­ting­ham and Direc­tor of the Arthri­tis Research UK Pain Centre.

Walsh: One approach to help­ing peo­ple to man­age their pain is what we call mul­ti­dis­ci­pli­nary pain man­age­ment pro­grammes. These are often used in sit­u­a­tions where indi­vid­ual treat­ments to try and sup­press or elim­i­nate pain have not been entire­ly suc­cess­ful, when the pain’s still inter­fer­ing with people’s lives.

Mul­ti­dis­ci­pli­nary pain man­age­ment pro­grammes work on the prin­ci­ple that, well, we could send peo­ple to see a psy­chol­o­gist and we could send peo­ple to see a phys­io­ther­a­pist and we could send them to see an occu­pa­tion­al ther­a­pist and at the end of all that, in fact, what people’s expe­ri­ence usu­al­ly is, is one of con­fu­sion. That every­body seems to be using dif­fer­ent lan­guage to explain what’s going on. Some­times it seems con­tra­dic­to­ry – it doesn’t seem to fit together.

And, there­fore, peo­ple have devel­oped pro­grammes where­by all the dif­fer­ent types of approach­es which are out there can be brought togeth­er under one treat­ment. And these pro­grammes are often run in groups of peo­ple, part­ly because actu­al­ly peo­ple often get more out of talk­ing to oth­er peo­ple with sim­i­lar prob­lems than they can do out of health pro­fes­sion­als who have nev­er had the prob­lem them­selves. Now, every­body is dif­fer­ent. Nobody’s prob­lems are exact­ly the same. But work­ing with­in groups is often, I think, more effec­tive than just talk­ing one-to-one with a professional.

So pain man­age­ment pro­grammes are com­mon­ly used and rec­om­mend­ed for chron­ic pain for which there isn’t a sim­ple cure. These pro­grams don’t aim to elim­i­nate the pain. They accept that the pain is going to still be there at the end of the pro­gramme, but if the pain doesn’t dom­i­nate the person’s life in the way that it was before, then that’s a use­ful outcome.

Jones: One of the things which I find most awk­ward is just using a knife and fork when you’re eat­ing. When I was at uni­ver­si­ty, I just used to eat piz­zas all the time, because you can just pick it up with your hands. But it’s embar­rass­ing, in a way, because just this week, I was in a restau­rant with a friend, and my left wrist was in agony, essen­tial­ly, so I couldn’t use it at all, so I’m there try­ing to hack through my food just using a fork with my right hand. It’s just frus­trat­ing that sim­ple things like hav­ing your din­ner caus­es pain. I don’t think any­one can ful­ly under­stand until they’ve expe­ri­enced it themselves.

Kelle­way: And I’m sure what Kiera Jones says is true. But here on Air­ing Pain, I and oth­ers bring­ing you future edi­tions have expe­ri­enced this sort of pain. And I’m hop­ing that our mutu­al under­stand­ing and shared expe­ri­ences, along with those of the health pro­fes­sion­als, will help all of us, suf­fer­ers, car­ers, and health pro­fes­sion­als, gain a bet­ter under­stand­ing of each other’s challenges.

But let me remind you that what we can­not do on Air­ing Pain is offer a diag­no­sis or rec­om­mend a spe­cif­ic treat­ment, ther­a­py or drug. We will, how­ev­er, help you find your own way through the labyrinth of infor­ma­tion and mis­in­for­ma­tion that is avail­able on the inter­net and elsewhere.

Ian Sem­mons: Some are worn down by going through the var­i­ous parts of the NHS and going nowhere and they don’t know where to turn. Oth­ers will search the inter­net for any­thing and there’s a dan­ger there because peo­ple are look­ing for what we call the ‘Holy Grail’. That they’re going to find a cure for their pain and you gen­er­al­ly have to accept that a cure for chron­ic pain just isn’t there. Man­ag­ing your pain bet­ter, cer­tain­ly, but the cure might not be there.

Kelle­way: Ian Sem­mons is Chair­man of the char­i­ty Action on Pain. If you’ve just joined us, I’m Lionel Kelle­way, bring­ing you the first in a fort­night­ly pro­gramme of Air­ing Pain, pro­duced by Pain Con­cern, sup­port­ing peo­ple who live with and care for those in pain.

Here’s the patron of Pain Con­cern once again, Claire Rayner.

Rayn­er: It all start­ed with osteoarthri­tis. I began to get wear and tear of my joints when I was still quite young. Oh, I sup­pose in my fifties. And it was not much fun. I did what most peo­ple would start with – I’d take a cou­ple of parac­eta­mol and try and ignore it. Ulti­mate­ly, I was giv­en arti­fi­cial joints. I’ve had, over the years, five knee joints. Now, as well as knee joints, I’ve got shoul­der joints. I’m very lucky that one has worked mag­nif­i­cent­ly. But most of the time, I hon­est­ly think, you deal with pain by… you have to be ratio­nal about it. Is there any­thing you can do to get rid of it? Yes – do it! Is there any­thing you could do to get rid of it com­plete­ly? No. Okay. Bad luck – live with it! And that’s what you have to do.

You learn as I learn not to think about it, not to focus on it. When I find I have a pain that both­ers me more in one knee, I will start flick­ing my fin­gers, even as I’m watch­ing tele­vi­sion, because that makes me shift my focus of atten­tion from the achy bit to a bit that isn’t aching. And that works quite well. I don’t do it — if I do it in the cin­e­ma, peo­ple might notice, but even there, if some­thing hurts, I might flex my toes, because that shifts my phys­i­cal atten­tion to anoth­er part of my body.

Kelle­way: That’s good, per­son­al advice from Claire Rayn­er, who amongst all her cam­paign­ing and writ­ing is Pres­i­dent of the Patients’ Asso­ci­a­tion and a for­mer mem­ber of the Roy­al Com­mis­sion on Long Term Care of the Elderly.

Many of us are under the impres­sion that pain and old age come togeth­er, but pain is not an inevitable part of aging. Pro­fes­sor Nick All­cock is an asso­ciate pro­fes­sor at the School of Nurs­ing in Nottingham.

Prof Nick All­cock: When you’re suf­fer­ing from chron­ic pain, if you have a belief or an atti­tude that the pain is inevitable – that it’s because of your old age, there’s noth­ing that can be done about it – you’re wor­ried that talk­ing about your pain to oth­ers might lead to oth­ers get­ting fed up with you or fed up with hear­ing about your pains and your moans and there­fore you don’t say any­thing. It can often lead to things like social iso­la­tion because it’s very dif­fi­cult when you are suf­fer­ing from a chron­ic pain that’s quite dom­i­nant in your life. It’s dif­fi­cult often to talk to oth­ers about it. It can be some­thing that oth­er peo­ple don’t always want to hear you talk­ing about, so some­thing that is dom­i­nat­ing your life and mak­ing your life quite dif­fi­cult because you can’t sleep, you can’t exer­cise, you can’t do the things you want to do, and yet, you can’t talk to oth­er peo­ple about it – it leaves peo­ple feel­ing quite isolated.

There­fore, it’s impor­tant to realise, I think, that pain is not inevitable in old­er age, that just because you’re old­er doesn’t mean that this is some­thing you’ve got to put up with, that you do need to be talk­ing to your gen­er­al prac­ti­tion­er; you need to be talk­ing to your car­ers and your fam­i­ly about this. We need to make sure that old­er peo­ple feel they have as much right to access the ser­vices that are avail­able, and the spe­cial­ist pain ser­vices that are avail­able, as any­body else. Just because you’re old doesn’t mean that you should put up with it.

Rayn­er: Absolute­ly, yes! My treat­ment has been arti­fi­cial joints. This one is no longer treat­able, my right shoul­der, in the sense that I do not want to be exposed to fur­ther surgery, so my care is based on anal­ge­sia – painkilling, and pain avoid­ing. I don’t reach for things I shouldn’t. I learn how to use it wise­ly, this arm. It’s all right for the writ­ing, but I’ve learned not to try and lift myself up with it. I’ve learned not to stretch with it. Tricky ‘cause it’s my right arm, but there you go. And I shake hands when I meet peo­ple. I put up my left hand to say: ’Hel­lo, it’s love­ly to see you.’ They’re a bit star­tled at first. I say: ‘Sor­ry, the oth­er one’s a bum.’ [laughs] And there you go. Just be cheer­ful about it.

Just be cheer­ful about it. I’m deaf as a post. When I meet peo­ple I say, ‘You’ll have to speak up love, I’m a bit mut­ton.’ You know the term ‘Mutt and Jeff’? Good old cock­ney, you know, Mutt and Jeff, I’m a bit mut­ton. [Laughs]

You’ve got to be brave and upfront. Do remem­ber that once you’re an old grown up per­son, you don’t have to be polite and good any­more – you are allowed to be self­ish, if that’s what you think it is. I don’t think it’s self­ish, I think it’s com­mon sense to look after your­self. But you’re allowed to ask for what you want – you’re allowed to say, ‘Please help me.’ There’s no loss of face in that, I do it all the time.

Kelle­way: Claire Rayn­er.

One of the many casu­al­ties of liv­ing with con­stant pain is a good night’s sleep. Try­ing to find that decent sleep can turn your bed­room into a tor­ture cham­ber. Dr Nicole Tang is a research fel­low at the Insti­tute of Psy­chi­a­try work­ing on sleep and pain research.

Dr Nicole Tang: When peo­ple are not sleep­ing and they have chron­ic pain, that can be like a dou­ble form of tor­ture. You’re not sleep­ing, you’re not feel­ing com­fort­able in your body and you’re alone in the mid­dle of the night, think­ing about the upset­ting things in the past. That can be quite trau­mat­ic, because if you talk to pain patients or insom­nia patients, they feel that they are stuck in a vicious cir­cle and they don’t know how to get out. In ther­a­py, main­ly what we do is just to pull them out a lit­tle bit, see what they’re fac­ing and what are the options for them in terms of treat­ment and then gen­tly lead them to a way that will help them to main­tain their sleep.

Usu­al­ly the strate­gies that we sug­gest to them are very coun­ter­in­tu­itive. Let’s say if you want to have bet­ter sleep, actu­al­ly, the best way is to not lie in bed for so long try­ing to get to sleep. When you’re dying to get to sleep, per­haps the best way to help you to sleep is to reg­u­late your sleep so that your sleep could be con­sol­i­dat­ed. You will be crav­ing for sleep at the right time so that you can con­trol the tim­ing of sleep and you don’t have to wait for hours in bed, toss­ing and turn­ing and yet, sleep doesn’t come.

Kelle­way: Don’t for­get that in today’s edi­tion of Air­ing Pain, I’m just giv­ing you a taster of what will be explored in much greater depth in future pro­grams. Sleep is cer­tain­ly one of the issues we’ll be cov­er­ing, as is the sub­ject of how to pace one­self. Dr David Laird is a con­sul­tant in pain med­i­cine in Durham.

Laird: When we’re suf­fer­ing from pain, on the good days, we try to car­ry on as if the pain wasn’t there — for our grand­chil­dren, for our­selves, for our friends and fam­i­ly, some­times for work. The result of that is that some­times we push and over-push and then we pay the cost. On the next two days, three days, we’re wiped out, we’re frus­trat­ed, and every­thing builds up again. I’ve talked to peo­ple who are ath­letes, and how they train is not by doing a ten-mile run one day a week and noth­ing for the next six days to recov­er, and then anoth­er ten-mile run. They do a lit­tle and they do it often. There’s a Tan­zan­ian proverb that says: ‘Lit­tle by lit­tle, a lit­tle becomes a lot.’ That is so relevant.

Yes, there are days when, for that spe­cial occa­sion, you do too much for the shop­ping trip or with some­body who you haven’t seen for a long time or for a wed­ding or for an extra­or­di­nary occa­sion where you know that you’re going to push your­self. You’ll mark off in the diary the next two days because they’re going to be dimin­ished in what you can do, in how you’re feel­ing, in what you’re think­ing, in your mus­cle pain. But for gen­er­al day-to-day work, on a long-term basis, pac­ing is what patients have told me makes the biggest dif­fer­ence most con­sis­tent­ly. It’s their accom­plish­ment and they feel much more in con­trol. I real­ly want to pass that on to you, because that’s a major les­son that I have learned.

Kelle­way: That was David Laird.

It’s my hope that you found this first edi­tion of Air­ing Pain use­ful. You can get fuller infor­ma­tion on what’s com­ing up in future pro­grams from the Pain Con­cern web­site at: www.painconcern.org.uk.

Don’t for­get that Pain Con­cern is a char­i­ty that can help you. We have a sis­ter mag­a­zine to this pro­gram, called Pain Mat­ters, and we’d like you to be part of our com­mu­ni­ty, be it on our Face­book and Twit­ter pages, email, or good old-fash­ioned pen and paper. If you have a ques­tion that we can put to an expert on your behalf, then we would love to hear from you.

And final­ly, let’s end this first edi­tion of Air­ing Pain with a few words of encour­age­ment from Pete Moore, of the Expert Patients Pro­gramme in Eng­land and Pain Concern’s patron, Claire Rayner.

Moore: Peo­ple with pain, we become so hard­ened with life, you know, think everything’s against us, but the best sug­ges­tion I can give peo­ple with pain is: ‘Don’t give up.’ There are answers out there. You’re on a jour­ney. It can be an excit­ing jour­ney. Things will hap­pen to you beyond your wildest dreams. Get your­self on a course. Get your­self on a self-man­age­ment pro­gramme or a pain man­age­ment pro­gramme, what­ev­er works for you. But work close­ly with your health­care pro­fes­sion­al. You’ll find that things will hap­pen to you. If you feel that you’ve lost your fam­i­ly, they’ll return. If you feel that you’ve lost your job, you’ll get anoth­er job. But if you think life’s going to come to a screech­ing stop because of your pain then you need to think again.

Rayn­er: One of the best things you can do is get in touch with a spe­cif­ic group – they’re all there. Use them. And then just get on with liv­ing your life! And if you’ve been dealt a bum hand, well, you can turn it into some­thing good.


Con­trib­u­tors:

  • Dr Bev­er­ly Col­lett, Intro­duc­tion to Pain
  • Dr Sher­rill Snel­grove, Chron­ic Low­er Back Pain
  • Kiera Jones, Per­son­al Story
  • Dr David Laird, Pacing
  • Dr Steve Allen, Pain Clinics
  • Claire Rayn­er, Patron of Pain Con­cern, Nurs­ing and Pain/Patron’s Voice
  • Pro­fes­sor Blair Smith, ‘What is Pain?’
  • Pro­fes­sor Richard Lang­ford, The British Pain Society
  • Pro­fes­sor David Walsh, Arthri­tis Relat­ed Pain
  • Ian Sem­mons (Chair, Action on Pain), Action on Pain
  • Pro­fes­sor Nick All­cock, Pain in Old­er People
  • Dr Nicole Tang, Sleep and Pain
  • Pete Moore, Liv­ing with Pain.
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