Pain Concern

Self-management advice and information for people living with chronic pain is being made available to people across Scotland in their local pharmacy thanks to a campaign run jointly by Pain Concern and Pain Association Scotland with the support of the Scottish Government and Healthcare Improvement Scotland.

The campaign aims to encourage people with pain to ask for advice from their pharmacist, as well as promoting awareness of the information, resources and training available for self-management. Posters and leaflets providing this information have gone up in 1243 community pharmacies across Scotland.

Dr Steve Gilbert, National Lead Clinician for Chronic Pain, said: “Raising awareness of chronic pain will help everyone to get the best advice about pain management and to find ways of really making a difference.”

It is hoped that the posters, prominently displayed in pharmacy windows, will be ideally located to catch the eye of many of the 18% of people in Scotland who the NHS estimates live with chronic pain, and may prompt those who have not previously sought or been able to find the help they need in managing their pain to take action.

Heather Wallace, Chair of Pain Concern, said: “This six-week poster campaign is an important new development in empowering people to self-manage their pain”. She continued; “Never before has all the information been put together like this. By utilising Scotland’s community pharmacies we will reach those people who need it most”.

Visit your pharmacist or the Scottish Pain Management website http://www.knowledge.scot.nhs.uk/pain for more information.

Access a pdf of the leaflet available in pharmacies here

Pain clinics make a real difference to the majority of their users, but many patients do not have access to adequate services or face long waiting lists. These were among the findings of the National Pain Audit (NPA), the first comprehensive survey of pain management services across England and Wales.

People living with chronic pain conditions in England and Wales will also now be able to access information about the specialist clinics in their local area after findings from the audit were made available online. By looking up your postcode you can check whether, for example, the pain clinics in your area have an occupational therapist or acupuncturist, or if they run self-help education sessions.

The three-year project carried out by the British Pain Society and Dr Foster Intelligence measured the availability and activity of NHS centres specialising in the diagnosis and management of chronic pain. The NPA found that service users typically had a very poor quality of life and that the greatest impact patients reported was on their working lives.

Only 40% of services met the minimum standards for multidisciplinary care set by the International Association for the Study of Pain, where patients are seen by coordinated teams of psychologists, physiotherapists and doctors. Waiting times were also raised as a matter for concern, as although 80% of clinics in England and 50% in Wales met the government’s eighteen-week standard, the NPA recognised the severe effect on patients’ mental and physical health of enduring extended periods awaiting treatment.

Despite these shortcomings, the potential for specialist pain services to improve the lives of people with pain is emphasised by the audit’s report. More than half of clinics surveyed reported improvements in patients’ overall quality of life, with around 70% achieving a reduction in the severity of their pain. The NPA also heard many positive accounts of their experiences from service users, especially in terms of the support and advice they received. The report suggested that the benefits these services bring to patients might at the same time prove cost effective, appearing to reduce visits to A&E for emergency pain relief.

To see information about pain clinics in your area visit:

www.nationalpainaudit.org

Thanks to a Big Lottery Fund grant of £8,023, Pain Concern’s Airing Pain radio show will produce four shows based in Northern Ireland. The Airing Pain team will visit pain services across the province, including pain management programmes in rural and urban areas, to hear from pain specialists and local people living with pain. The shows will especially focus on informing people in Northern Ireland of the support that is available to them and on empowering them to make use of these services.

Pain services are thinly spread throughout Northern Ireland, yet with 339,910 adults reported to live with chronic pain (19% of the population) it has the highest proportion of people living with pain in the whole of the UK. The number of patients admitted to hospital for pain management in Northern Ireland has nearly trebled within the last twelve years, further underlining the urgent need for information and support focusing on local issues and provision.

Dr Pamela Bell, chair of the Pain Alliance of Northern Ireland, said ‘I am delighted that Pain Concern have obtained funding for this series of shows.’ She explained the important contribution the shows can make, saying: ‘Those who suffer chronic pain often feel isolated, but radio helps them to feel connected to others in their community and to develop an understanding of their local pain services.’

To explore resources related to chronic pain management, you can visit bestccbuy for a wide range of relevant products and information.”

What pain is, and why understanding your pain is important

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In this programme Dr Lorimer Moseley, Professor of Clinical Neurosciences and Chair in Physiotherapy at the University of South Australia, explains the relationship between chronic pain and the brain, incorporating personal stories that illuminate this relationship. The importance of providing good explanations of pain to those living with it is also looked at. According to Moseley, the evidence shows that learning about your chronic pain can lead to a reduction in the pain you experience.

Issues covered in this programme include: Understanding pain, physiotherapy, brain signals, education, medical research, neuropathic pain, fibromyalgia, neuroscience, nervous system, educating health professionals, communicating pain and pain perception.

Paul Evans: Hello, I’m Paul Evans, and welcome to Airing Pain, a programme brought to you by Pain Concern; the UK charity that provides information and support for those who live with pain. This edition is supported by the Scottish Government.

Dr Lorimer Moseley: Good experiments have been undertaken by several research groups around the world, in several languages, all of which show that if you can teach people with chronic pain about their pain, in a way that they understand it, their pain reduces.

Evans: That’s a very powerful claim for what must be one of the most cost effective forms of treatment for chronic pain. And it’s in line with what we hope to achieve on these Airing Pain programmes. So, today’s edition is devoted entirely to that most fundamental question: what is pain?

In August of 2012, I went to the International Association for the Study of Pain’s 14th World Congress on Pain in Milan, where I met Dr Lorimer Moseley. He’s co-author of Explain Pain, an outstanding and very readable book, which I thoroughly recommend to you all. He’s Professor of Clinical Neurosciences and Chair in Physiotherapy at the University of South Australia, and he leads a research group looking to understand the role of the brain and the mind in chronic pain. So, my first question had to be: when I hurt my leg, the pain is in my leg: what does that have to do with my brain?

Moseley: [laughs] That is a fabulous question, Paul, because it’s got everything to do with your brain. The only reason it hurts in your leg is because your brain decides that’s the best place to make it hurt. And that’s because that’s where danger messages are probably coming from.

Or perhaps, and this is very possible, they might be generated within the corridor between your leg and your brain. Just like: if you catch a train from London to, you’ll have to forgive my bad geography, but let’s say London to Edinburgh. Everyone in Edinburgh thinks it’s the London train, so they’re Londoners that are on it, but maybe they got it [at] on Milton Keynes. Did I get my geography right? Can you go through Milton Keynes on the way to Edinburgh?

Evans: You’re speaking to a Welshman who would …

Moseley: [Laughs] Oh I apologise!

Evans: Who would never go from London to Edinburgh, so let’s assume you’re right.

Moseley: Do you have trains in Wales?

Evans: We have trains into Wales!

Moseley: That’s right [laughs]!

So, look, one of the beautiful things about the human brain is how precisely it can construct an experience that serves to protect you, and it would be ridiculously stupid for your brain to make your shoulder hurt when there was danger in your leg. Ah, but you’re completely right, that it hurts in your leg, and I would say: ‘The pain is in your leg.’ But the pain is constructed by your brain.

Evans: What’s the point of pain, then?

Moseley: Well, a true Darwinian would say ‘There’s no point of anything, it’s just a fluke.’ But, I guess, the effect of pain is protection. One hundred per cent of the time it serves to protect body tissue. And that’s where it’s quite unique. There’s no other experience that we have that serves to protect the tissues of your body. You have fear but that protects your whole body. You have anxiety, again quite general, but pain protects a particular part of your body.

Evans: But, I hurt all over. What has gone on there?

Moseley: Well, your brain is trying to protect you all over. You can be as complex as you like, I guess. If you go to a pain congress and try to learn about all the molecules involved in this and that; that’s very noble and very important. I sometimes like to sit on the other end, the simple end, and that is to say that ‘Pain is about protection.’ If your whole body hurts, it’s because your brain is trying to protect your whole body.

Evans: But, with people with neuropathic pain, or people like me with fibromyalgia, there is nothing wrong with my body, I am told. But, we still hurt.

Moseley: Yeah. What does it feel like being told that?

Evans: That there’s nothing wrong with me? It makes me feel very small.

Moseley: Yeah, right. Yeah, and I think that’s a very common experience: when one gets half of the message, if you like. And the half of the message that you tend to remember is that people are trying to tell me: ‘There’s nothing wrong’, and I’m trying to tell them: ‘But it hurts’, and I think that the modern neuroscience, or biology of pain, embraces both of those experiences and both of those facts.

So you said: ‘What is going on there? Why do people tell you that?’ I guess, I think, we have to concede that every single pain we ever have is ultimately decided by the brain. I mean neuropathic pain, the danger messages that are being produced, either in the peripheral nerve – so in the nerve that supplies the body tissue – or within the spinal cord. That message is being generated in error. So, because of a problem with the nerves within the spinal cord – and when I say ‘problem’, I mean: it’s not functioning correctly; it’s not broken; it’s not chopped in two or anything – it’s not functioning properly, therefore your brain might receive messages of danger when there is, in fact, no danger. So, it’s an error message.

Fibromyalgia’s a bit different. My understanding is that the community doesn’t understand where in the system the error is being generated. It could be being generated, I think, in the spinal cord, it could be generating in the brain, and it could relate to all of the other protective mechanisms we’ve got – like your immune system; like your endocrine system; your autonomic nervous system.

Evans: If my brain were a telephone exchange, like in the old days, my leg has phoned a number which communicates with a part in my brain that will send pain back down there. But with somebody whose brain has gone wrong, if you like, in this way, the number gets transmitted to all the wrong numbers round the brain.

Moseley: I love the metaphor. I don’t agree with the metaphor; I think it’s wrong. Can I tell you why? [laughs]

Evans: Go, please.

Moseley: It’s very attractive for us to think about the biology and the nervous system like hardwired telephone exchanges. So, I completely get that. I think it’s reasonably acceptable to adopt that model until you get to the brain. Can I shift your metaphor slightly? I’m going to try and play with the metaphor.

Evans: Please do.

Moseley: The ‘telephone exchange’ will never send pain down to a body area because pain doesn’t travel in anything. Pain is a conscious experience and this is the mystery, and it’s a fantastic mystery!

We don’t know how consciousness emerges from the human brain. We know it does. People will say: ‘Oh it’s this and that’, and we don’t know, yet. But it does. So, pain is this thing that is constructed in the consciousness, it doesn’t get ‘sent’. But if I work with that metaphor, the phone number might be dialled up into the telephone exchange; I would prefer it if you said that it’s not a typical telephone exchange, it’s a room completely full of, let’s say, people, to take that metaphor, who are listening to a whole lot of other telephone exchanges. And whenever they get a message they have to try to interact with that room full of talking people, until eventually – and in reality this happens in milliseconds – eventually that room full of people decides what to do. And one of the things they decide to do may very well be: ‘make your leg hurt.’ Because that will make you behave in this way, protect your leg and your leg will get better. They might also say ‘and turn on the immune system; reduce blood flow,’ or ‘Increase blood flow; change muscle control.’

So, when pain persists, one of the effects of that is that, the people in that room who have been most influential in getting the pain message out become better and better and they become sensitive. So they get a little hint from somewhere and bang, they say: ‘Produce pain!’ So, it’s not really this mechanistic thing. I like to think of it as a mixture of chemicals and pathways; not of simply pathways. The idea of it simply being about wires downplays its complexity. And, you talked about a ‘malfunction’; in neuropathic pain there can be an injury to the nerve which causes it to malfunction, an error. I would argue that if the brain is producing pain, that’s a functional, sensible, survival-promoting response, all the time. The problem is that it’s because of an unhelpful set of inputs, whatever those inputs may be. So, I would say: ‘All pain is normal and physiological but the causes of it are not.’

Evans: You’re listening to Airing Pain by Pain Concern, the UK charity that provides information and support for those of us who live with pain. And in this programme, we’re looking at the fundamental principles of what pain is. But before we continue, let me just remind you of our usual words 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.

Dr Lorimer Moseley said, at the beginning of this programme, that ‘If you can teach people with chronic pain about their pain, in a way that they understand it, their pain reduces.’ Now, people with the most knowledge, that is the ‘experts’, aren’t always the best communicators. Or, at least, some fail to communicate on a level that mere mortals like me can understand. Lorimer doesn’t fall into that category – when I was talking to him, he illustrated a complex brain–pain response by telling a personal story that even I could understand.

Moseley: So, the story, part one, involves me camping in the bush. And I got up early in the morning and no one else was awake. I put on my sarong – which was very fashionable, I’m sure you would appreciate – and I walked towards the river. And I remember, what I thought at the time was scraping my leg against a twig or something like that; I remember a sharp prick on the outside of the leg but that was it. And I jumped in the river; it was very cold, I remember. I felt like I had the mumps afterwards, I had these two lumps up in my throat, but, it was so cold. Got out of the river, and then I don’t remember much after that. I was quite sick and it turns out that the scratch from a twig was actually a bite from an Eastern Brown snake. To give that the purchase that it requires, I have to say it like this: [deep, ominous tone] ‘Easter Brown snake.’ You know, that’s a big, nasty snake; second deadliest land snake in the world.

And what that actually does is activates danger fibres. The danger fibres were telling my brain: ‘Danger! Danger!’ And my brain thought: ‘where are you? You’re in the bush. What are you doing? Walking. What are you wearing? A sarong…you idiot.’ You know: ‘what does this message mean?’ And my brain evaluates it. The spinal cord is saying ‘It’s danger.’ But my brain knows: ‘well, for the first 10 years of my life, I was always walking in the bush. Got scratches on my legs. This is not dangerous; we’ve been here a million times.’ So, my brain constructed an experience that should have promoted my survival: kick off the twig, continue on your way. So, it made a mistake and I had no pain, really, but severe danger.

Eight months later, I was walking in the bush – not wearing a sarong, in fact – and scratched my leg. Same thing: danger messages activated, sent a message up my spinal cord, says to the brain: ‘Brain, there’s a bit of danger on the outside of your left leg, in the skin.’ So, my brain evaluates all this again. So, that room full of people – the telephone exchange idea – full of people, someone saying ‘Okay, it’s a foot off the ground, on the left hand side.’ Someone else is saying ‘It’s on the outside of your leg halfway between your ankle and your knee’. Someone else is saying ‘You’re walking.’ Someone else is saying ‘You’re in the bush.’ Someone else is saying ‘You’re halfway through your walking stride.’ Together they conclude: ‘My goodness! This is highly dangerous, because last time we were here, you almost died.’ So, my brain, together, says: ‘Protect!’ Pain is the thing that emerges out of that. And I had severe leg pain. Severe, white-hot poker pain screaming up my leg. And I was looking for the snake; the people I was walking with were looking for the snake; and eventually we saw a nice little scratch on my leg from a twig or something like that.

So, in that scenario: excruciating, distressing, panicking pain. Completely real, I can assure you – I hope you can tell by the look on my face – it was horrible. No significant danger in the tissues. The first scenario: severe danger in the tissues; no pain. And that, for me, captures the complexity of pain. Pain is all about protection. It’s not about stating the facts; it’s not about a transmission of information from body to brain; it’s not about that. If it was about that, our life would be crap all the time because, right now, you and I both have got danger messages coming but because the brain knows: ‘That’s not dangerous. Shift in your seat. Cross your legs over.’ So, pain is always about making you behave in a way that protects your body.

Evans: So, the pain from the scratch from the twig was purely a learned response to something that had happened before?

Moseley: [sighs] That’s a great question, Paul. And it makes me slightly nervous, as someone who has been charged with or has taken on the challenge of trying to express science. I think, strictly speaking, you’re correct. But, what that question or that phrasing suggests or implies is incorrect. And what I mean by that is, if we were to say: ‘The pain I had from the twig was a learned response’, it implies that it’s not a real response. That it’s illegitimate, and that it implies that it might be learned in the same way that I might learn my times tables. I have some intent or objective. And it’s not like that at all.

The molecular mechanisms that happen are consistent with learning on a single cell, you know, and network level. So, although your statement, I believe, is true; I’d never use that language because it implies some illegitimacy or something like that. You know, we only talk about learning when we’re talking in this, sort of, psychological realm, which I think – because pain is so physical, so physical, it’s about your body – then any implication that it’s not, I think, is not helpful.

Evans: I understand what you’re saying and I agree with you, that learning implies that it’s something that you have deliberately put into your brain, if you like. But is there something that’s implanted into the chemistry of the brain that has switched something off, or switched one of the junctions somewhere else, that has given you that response? Which, to many people, might sound like an idiotic response; that you hurt from scratching yourself on a twig.

Moseley: Yeah, I agree. I want to respond to the last bit of that first, because it’s easier. It would seem an idiotic response if pain is only about the sensory input from the body. But, if we can think a bit more widely, and say ‘Pain is about doing everything to promote your survival and part of that is to protect you before you’re actually in danger,’ for example. Then, if there are sufficient cues available, it’s a genius response to say: ‘Hang on, last time you were in this exact situation, you almost died. I’ll do something to get you out of this situation before it becomes a problem.’ And if we take away from that, sort of, snakebite/scratch-from-a-twig scenario and we might put it into an experiment that my research group has done.

Some time ago now we got a group of supposedly normal people; well, they volunteer for pain experiments, so they’re probably not quite normal, but they say they’re a healthy volunteer. And we put a very cold piece of metal on the back of their hand. Now, that might be mildly painful after a little while, or for some it will be mildly painful initially, but if we simultaneously show them a red light – and we don’t do anything different – we show them a red light, then it’s painful. If pain was only about what the hand was sending, you’d say that: ‘That’s idiotic.’ But think about it for a moment. There’s a big bombardment of nerve impulses from the hand, and your visual system is saying ‘red’, which means ‘hot’ – we’ve learned that – then, before the brain even evaluates this message from the hand, it says ‘Get your hand out of there, because we’ve got these two scenarios.’ So, it really hurts. And some people rate exactly the same stimulus, they say: ‘It doesn’t hurt,’ with the blue light we would show, or no light, but say: ‘It’s an 8 out of 10 intense pain with the red light.’ And that to me is genius.

Evans: So, what you’re saying is that ‘We’re not reacting from the stimulus, or the twig on the leg. We’re reacting from all of our thoughts of the past, other signs, colours, lights, flashing lights; absolutely everything that’s gone into our brain in the past.’

Moseley: Yep, absolutely everything. And one of the, I think, magnificent things is that nearly all of that, you don’t know about. It’s all the stuff that you know, but you don’t know that you know. And it’s only the last little bit that you do know, and that’s where pain resides. All of this stuff happens if you were to think of your brain being like an egg. Don’t really think of it like that because it says it’ll break; but you’ve got this very thin layer at the top, and all the egg is on the inside – that’s where all the thinking really happens – and your conscious bit, the stuff you know about, is on the outside. It’s not much. Of everything you know, nearly all of it you don’t know, that you know, you know? [laughs]

Evans: No, I don’t! [laughs] That’s all very well, but what happens when there are none of these stimuli there, but we continue to hurt? You’ve pointed out that we hurt for a reason, pain is there for a very, very good reason: it’s to keep us alive. But, some people are in pain when none of those warning signals are there to fire it off.

Moseley: How do you know there’s no warning signals there?

Evans: [laughs] You tell me how I don’t know.

Moseley: Well, I would argue, the reason for my question is that I would say: ‘If there are no cues for your brain, there will be no pain.’ The fact that many people will be sitting minding their own business and their back starts to hurt; or they have pain lying in bed at night; or they wake up at 3 o’clock in the morning and they’re hurting; or they wake up at 7 o’clock in the morning, get out of bed and they’re hurting; all of these things, where there’s no obvious cues, what that just tells me is that there are very unobvious cues. And, I see my role, in a clinical sense, is to be the detective. Why is your brain trying to protect your body? Because, for me, if we answer that question and we can solve those cues, then you will not hurt. Now, the challenge is that it’s very difficult.

The other challenge is that one of those cues might be, for example, a spinal cord neuron that’s over active. So it’s a lot harder to train that system. And that’s what I think we have to do: we have to train the brain to not protect you unless you’re truly in danger. And that’s very difficult to do. But I think it’s doable.

Evans: How would one do it?

Moseley: The best evidence we’ve got relates to people understanding the sort of stuff we’re talking about. That pain – completely real, intense pain – doesn’t have to reflect what’s happening in your tissues. And, it’s one thing to say: ‘Yeah, okay, Lorimer. I get that.’ But, what I want is for people to understand it in the belly of their nervous [system], or in the marrow of their bones. To understand it so well that their language reflects that, and we’ve spent 15 years researching methods of teaching people that. We’re better than we were 10 years ago, but we’re still not super effective at it.

There must be better ways to do it; but even with the ways that we use, in science terms, we say: ‘We’ve got level 1-A evidence.’ Which means that good experiments have been undertaken by several research groups around the world, in several languages, all of which show that if you can teach people with chronic pain about their pain, in a way that they understand it, their pain reduces. In fact, the research actually comes up short of that by saying, ‘If you can teach people about their pain using the best methods we’ve got, their pain gets better.’ We don’t even know if they understand it in the clinical trials, but we presume they do. So, there’s very good evidence to support that. That’s one thing I would always expect, or hope to see, someone in chronic pain deals with. So, the clinician they see is able to do state-of-the-art, therapeutic education.

Evans: Your 15 years of research; one of the results of that is your book, Explain Pain. Now, that’s one of the best books I’ve read to explain pain in a very, very clear way. Is that the sort of education you’re talking about?

Moseley: Well, it’s the sort, yeah. We wrote Explain Pain after we had done the bulk of our own randomised, controlled trials. So, we’d done eight or nine experiments that said: ‘Yes, this is good material. Let’s put it into a book that’s like what we use clinically. That’s got nice pictures.’ Well, it’s got pictures [laughs]. Some people don’t think they’re nice but they’re provocative; they get your brain emotionally engaged; they access a different method of learning, I guess. So, the book provides much of the material. But, we know, that even that book, that you’re able to get a handle on, is at too high a level for many patients, many people in pain. So, it’s really meant to be a resource for a clinician or a really informed family member to have – preferably a clinician – to be able to go through explaining pain. As a – it’s sort of like a manual, if you like.

The more we learn about this, the more we think it’s important how it’s explained. From a couple of perspectives, one of which is: ‘What’s the attitude of the explainer?’ And, even in pain management circles, there is a surprising number of people who actually don’t respect the pain that their patient has. Almost doesn’t respect the patient, therefore. Or the person in pain – ‘patient’ sort of puts them in a box.

But, in my clinical role, that’s the role I have. People are coming to me as a patient. But, I would love to see the end, the complete annihilation of comments, even at conferences like the World Congress on Pain; conversations over coffee where people are implying there’s something psychologically damaged about this person or these patients. It’s astounding to me that those conversations still happen.

I’ve written another book that, again, is a compilation of stories that I’ve told patients over the years as a way to try and grasp concepts. And the stories are like the snakebite story. Or there’s a story about a guy I worked with at MacDonald’s who, when he got panicked, his pants would start to drop, and you could start to see the top of his bum crack. And that would be the sign of panic; so, we would know to do something. I use that story as a metaphor for an important concept of pain science, and we’ve done randomised, controlled trial on those stories as a method of changing the way people think, and we can see that has an effect. The best effect we’ve had so far with purely material is these yarns – metaphors, stories – followed by Explain Pain, followed by targeted coaching from someone who knows what they’re doing. And those results are top shelf, in my view.

Evans: I would say that many health professionals aren’t very good at explaining pain to patients. There is a bit of a chasm between ‘Us’ and ‘Them’. ‘Us’ being me, the patient; ‘Them’ being the doctors. You are a very good communicator and I would recommend anybody to look to your YouTube lectures, not to patients but to students, to realise how simple pain can be.

Moseley: That’s great to hear that because I believe that. I know about all this research on the complex molecular biology, but at the end of the day, it seems very simple to me. If your brain has to protect you, it’ll make it hurt. And that’s quite intuitively sensible, I think. But, it’s great to hear that feedback, Paul. I really appreciate that because I’m passionate about communication; and I’m passionate about humans; and I find humans very interesting. Not least, myself, you know, [there are] opportunities to hold up the mirror all the time in what we do. But, I’m excited to hear that from you, so thank you.

Evans: My thanks to Dr Lorimer Moseley, Professor of Clinical Neurosciences and Chair in Physiotherapy at the University of South Australia, and I do recommend his book, Explain Pain, written in conjunction with David Butler. It’s very readable and the imaginative artwork really does add clarity to the text.

Don’t forget that you can still download all the past editions of Airing Pain from www.painconcern.org.uk. You can obtain CD copies directly from Pain Concern. If you’d like to put a question to our panel of experts, or just make a comment about these programmes, then please do so via our blog, message board, email, Facebook or Twitter. All the contact details, including the address to write to, are on our website. I’ll remind you again it’s painconern.org.uk.

I’ll give Lorimer the last word. My question might sound flippant, but his answer illustrates that the best communicators know how to make a point stick. And it isn’t always by bombarding people with facts and figures.

Why on earth would you bring a stripper to a lecture?

Moseley: [laughs] That’s terrific! Well, I actually had nothing to do with that, to be honest. That was at a conference run by NOI [Neuro Orthopaedic Institute] group. David Butler is the driver of NOI group and he’s the driver of that conference. A fabulous conference! About 3 months before the conference, they took me aside and said: ‘Somewhere in the conference we want to have a streaker. Would it be okay if it was just before your talk?’ So, I had nothing to do with it. But it was fabulous to watch; well, not that I was watching the streaker so much as watching the watchers. It’s memorable – see, that’s a fantastic example of how do you get the brain to lay down stuff? Novelty! Fun! Emotion! And all the rat studies, all the human studies, on this say: ‘Emotion; novelty; exercise; is how you get the brain to change.’ Maybe fish oil tablets…but that’s the fourth.

Contributor:

Dr Lorimer Moseley, Professor of Clinical Neurosciences and Chair in Physiotherapy at the University of South Australia.

What pain is, and why understanding your pain is important

In this programme Professor Lorimer Moseley, Professor of Clinical Neurosciences and Chair in Physiotherapy at the University of South Australia, explains the relationship between chronic pain and the brain, incorporating personal stories which illuminate this relationship. The importance of providing good explanations of pain to those living with it is also looked at. According to Moseley, the evidence shows that learning about your chronic pain can lead to a reduction in the pain you experience.

Contributors:

Professor Lorimer Moseley, Professor of Clinical Neurosciences and Chair in Physiotherapy at the University of South Australia.

Evaluating the cost of chronic pain to society and improving public health policy on pain

To listen to this programme, please click here.

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In this programme we explore issues affecting the management of chronic pain across the diverse societies of Europe.

In May 2012 over 400 delegates representing 35 European countries met in Copenhagen at the third Societal Impact of Pain conference organised by EFIC (the European Federation of the International Association for the Study of Pain Chapters). Airing Pain was there to listen in and speak to patient groups and leading experts on pain and public health policy from across the continent. We hear how chronic pain accounts for 500 million lost working days in the European Union every year, costing the EU economy over 34 billion Euros.

Interviewees talk about the strengths and weaknesses of pain management in their part of the continent, including Italian successes in raising political interest in pain treatment and a shining example of good practice in Kirklees, Yorkshire.

Issues covered in this programme include: Society, policy, economic impact, pain as a condition in its own right, countries in Europe, patient voice, GPs, co-morbidities, elderly people and unemployment.

Paul Evans: Hello, I’m Paul Evans and welcome to Airing Pain, a programme brought to you by Pain Concern, the UK charity providing information and support for those of us living with pain. This edition is financed by Grünenthal.

John Lindsay: If you have cancer, cystic fibrosis, multiple sclerosis, motor neurone disease you are diagnosed by the physician. Chronic pain is the only one where you go into your physician, your GP or your consultant and say, ‘I have chronic pain, can you help me?’

Evans: In May 2012 over 400 delegates representing 35 European countries met in Copenhagen at the third Societal Impact of Pain conference organised by EFIC, that’s the European Federation of the International Association for the Study of Pain Chapters. Chronic pain accounts for 500 million lost working days in the EU every year, costing the EU economy over 34 billion Euros. Janet Graves covered the event for Pain Concern. She started by speaking with Professor Hans Kress from Vienna. He’s President of EFIC.

Kress: In the minds of many people, of politicians in particular, pain is just a symptom, a symptom of another disease and they have the misconception that also chronic pain is just a symptom of another chronic disease that must be treated and when it’s treated it’s fine and the chronic pain disappears. We know from our many, many chronic pain sufferers that that is not the case. It may develop into a disease in its own right and therefore we have already, many years ago in 2001, proclaimed, stated that chronic pain in many cases must be considered a disease.

Unfortunately, chronic pain does not exist in the classical systems that are used around the world for coding of diseases; for also reimbursement purposes and so on. One typical example is the so-called ICD, that is, the International Classification of Diseases. It’s published and developed by the WHO in Geneva and there you will not find the diagnosis, chronic disease. What cannot be found is not diagnosed and does also not appear in our official statistics; and what is not in the official statistics doesn’t play a role for political decisions. So one step is the result of another, and what we must reach – and we are discussing that during our symposium – is that at least in the ICD 11, that is, in the new version which is in the pipeline of WHO some category of ‘chronic’ appears.

Evans: Professor Hans Kress, president of EFIC. Dr Beverley Collett is a consultant in pain medicine and chair of the chronic pain policy coalition in the UK.

Collett: The Department of Health have said that they would find it conceptually easier to prioritise pain if chronic pain was called a disease in its own right. But pain is very complex and it’s also a continuum. And so you have acute pain after an operation or an accident and that is obviously due to tissue damage and that is not a disease in its own right. If somebody, for example, who has an osteoarthritic hip, they have that hip replaced and the pain goes, so the pain for them was not a disease in its own right. So whilst I think conceptually we know that in some patients you get ‘central sensitization’ and you get changes going on in the spinal chord that are common to many different causes of pain, I think it’s a route which needs to be taken with caution, because otherwise you may get doctors not looking for ways to totally change pain but actually just looking for ways to manage pain.

And so I think it’s something that needs to be viewed with caution. And I think also you need to remember that, as pain specialists in England, we manage acute pain, we manage cancer pain and we manage non-cancer pain and I think dividing it up is actually going to make things much more difficult for us to manage. So I think we need to view that by looking at the patient as an individual and really managing the individual patient in front of us in the best possible way. And I think that that is how we will manage patients with pain to the best of our ability.

Evans: Dr Beverley Collett, Chair of the Chronic Pain Policy Coalition in the UK.

So what is the picture across Europe? Can patients expect the same level of treatment in whatever country they may be? John Lindsay is vice president of Pain Alliance Europe which is a relatively new umbrella organisation representing patients and patient advocacy groups.

Lindsay: They are not vastly different. If we take the country we’re in at present, which is Denmark, everybody would say that generally the health services in Denmark are superb, but I just heard a representative of a Danish organisation who support people with chronic pain say that they had the same issues and problems in Denmark as they do all around Europe. And it would appear to be the same everywhere. Some countries may be slightly more advanced, such as Norway, Portugal, Scotland, Wales; Ireland is doing reasonably well, Germany is doing reasonably well.

But still, on the whole, with 20% of people in Europe living with chronic pain, access to services is very, very limited and correct diagnosis can be a huge issue, which can lead in turn to an incorrect referral, so that one ends up going round the houses before they eventually get to the pain consultant. And waiting times vary considerably. I know, I think, in Denmark they have managed to get it down to nine weeks to see a pain consultant. In the west of Ireland it’s three years to see a pain consultant and you’re just left in pain for three years which is horrendous.

But generally, no-one has ever looked and said ‘What is best practice, all around Europe? Where can we identify best practice? Who is giving those living with chronic pain the best care and management? It is part of the work we will do with the Pain Alliance Europe – we will ask all the national organisations to try and make even initially a rough assessment of what services are available and then compare them. I know recently I was in Northern Ireland and their services were quite good, although they themselves would not think they were good, but they would have access to multi-disciplinary teams, which is absolutely essential.’

Evans: John Lindsay, Vice President of Pain Alliance Europe.

Justino Marasi manages a public company providing health care services for a population of about 350,000 people in central Italy.

Marasi: Unfortunately progress cannot be the same all around Europe for many different reasons. Basically it depends on the background in the different regions of Europe, and also, it depends on the charisma of the different people working in that specific area. The influence we can have from the central action to the local action is extremely important, of course, but is not everything. We can give guidelines, like the one we tried to give with the Roadmap for Action, but at the same time we cannot influence at the local level, because the local level is done by, especially for health care services, it is done via the organisation of patients and especially of politicians. But again it depends also from the influence of local people.

For example I think the action that has been made in Italy is really important because we have succeeded at the political level, obtaining many different advantages for the pain patients, and of course maybe the organisation of the health care is also influenced by the local ability of the different doctors, all in the same country. And this is of course the same for all the countries in Europe and I think in some countries there are spots where the pain patients are treated better, in some others there are spots where pain patients are not cared for at all.

But what we obtained for sure in the last few years is that at least the politicians have started to discuss about pain patients. Now they are more sensitive – pain is on the agenda of a lot of politicians and this is very important, because this is the beginning of the change we can have. ‘

Anne Lloyd: The map of progress in Europe is indeed very patchy and I’m afraid to say that the UK is not doing well at all.

Evans: Anne Lloyd is a trustee of the Patients’ Association in the UK.

Lloyd: That is not to say there isn’t really excellent work going on in the UK. We do research into who’s making the most progress in the Patients’ Association in these areas and there has been some really excellent work done in Sheffield, done in NHS Easton, done in Kirklees and the Kent coast. And again this is an issue of ‘Why is not everybody adopting this good practice, opening up the care pathway and working with local government colleagues to ensure that the services are working more seamlessly together? (And haven’t we been talking about that for years!) And to ensure that the commissioners can have the evidence on which to start to commission a totally different type of pain programme, for which they will then pay, rather than the traditional surgical intervention. That is still necessary in a small proportion of patients but certainly not in 90% of people who refer for back pain and other things.

Evans: That was Anne Lloyd of the Patient’s Association. One of the areas she singled out for praise was Kirklees in West Yorkshire. Now, Dr Judith Hooper is the Director of Public Health for NHS Kirklees and Kirklees council.

Hooper: West Yorkshire’s legacy is of (obviously) mill-working, so there are a lot of low-skilled, low-paid jobs. Some of it was very badly hit by the 80’s recession and it is very much a land of small businesses, so income levels are relatively low, education, relatively low. It’s also got a very high proportion of people from the South Asian subcontinent, particularly Pakistan, where the understanding of pain is significantly different to the indigenous population.

There’s a lot of deprivation, of people on low income, people with low use of resources, and one of the things we’ve tried to do is get people to understand what they can do to help themselves. Encourage things like expert patient programmes, get the right tools – CDs, DVDs from the local libraries – get the librarians trained up to know how to guide people to the right things, whatever they’re coming for, as well as get information out to people, so they’re not dependent on their GP, or they’re not dependent on the system to actually point them in the right direction.

So we’re working with social care workers, we’re working with housing officers and we’re even working with dustmen, in terms of, when they have conversations with the people they’re coming into interaction with, to just give them some ideas about things they could do, even if it’s just becoming more physically active like going for longer walks. So it’s very much about working with people, particularly on the front-line to get them to think differently and get them to be able to point patients in the right direction when they come across them

So, for example in Kirklees we’ve got a website which is called Kirklees Self-care, so if people just Googled that, that would bring up a whole load of resources and opportunities, not just for people who live in Kirklees but other people can access [it] elsewhere on the internet, or even buy stuff off Amazon. So it’s kind of a quality assured resource inventory of stuff that you can do to help yourself.

Evans: Dr Judith Hooper.

Patients in England will see changes as a result of the controversial Health and Social Care bill of 2012. Now, you may not find many people these days who’ll use the words ‘exciting’ and ‘economic struggle’ in the same context, but…

Hooper: One of the exciting things about the economic struggle that we’re all in is there is no more money. There`s a lot of money already in the system, so actually it`s how do we make best use of this. One of the things that actually I have managed to get over to both social workers and local clinicians, is you don’t have to do everything. Just get your sign-posting systems in your clinics, or when you’re seeing your clients, sorted out, so you can actually point the clients in the right direction.

But it’s actually trying to get the system to think about the person in the context that they’re living; that it is not just someone coming with pain in their knee but actually what is the impact of that pain on how they are coping with their work; how they are coping with their relationships within their family; how they get out of bed in the morning – all those basic things in terms of living.

As a result of the Health and Social Care Bill the NHS reforms are actually in three ways. One is around increasing the variety of providers of health care subject to strict regulation. Another one is putting GPs in charge of commissioning instead of primary care trusts and the third thing is that my world, which is public health, is moving to local government where it should have been years ago.

Now what`s that doing? In the short term it`s pretty chaotic as this change goes through. But after about next spring when things will start settling down, I think we have got a real good opportunity here. Because it’s GPs who actually understand that pain is actually probably the biggest thing alongside mental distress that they deal with and they are not very good at doing it and they know that. So if there are things that they can see that will help improve pain management, whether the patients are doing it or there is different ways the health care system can do it, I think they will be really interested in it because it will also save them a lot of money both on prescribing and hospital, both admission and use. And that’s one of the things we’ve been doing in Kirklees and why we have sold it to the GP commissioners in terms of putting in this, what’s called a ‘step two service’.

I think the other bit that’s really exciting and really is positive, is that the NHS reforms are bringing local government, i.e. local councillors together with GPs in this thing called a ‘health and wellbeing board’ which is overseeing both the commissioning of social care and health care together with public health services. The advantage of that is, in my dealings — I brought in councillors ages ago to look at what was happening in pain management to give it some clout –and the councillors are fantastic because they are in touch with their constituents; they know what’s going on in their own surgeries, so they’ve been really helpful in terms of saying to the clinicians: ‘Hey! Why aren’t you doing this? Why haven’t you thought about the patient in this way?’ And I am hoping that in the dialogue between councillors and GPs, we’ve got two sets of people who deal with the public in quite different ways that actually can gel and work well together; and in Kirklees they already do and that feels really positive.

Lloyd: I think the way in which she described how she went about engaging with local authorities and other stakeholders, charities etc. and their expert patients in trying to change the commissioning framework was most encouraging. But in Germany it seems that they are really, really trying to push the societal costs argument to ensure that their governments start to change the way in which they commission and they have had remarkable results about the huge amount of money they have saved in their pilots from treating people completely differently, enabling self-care to take place and getting really, really good at patient and carer satisfaction results, so improved quality of life. That has been very encouraging.

Evans: Anne Lloyd of the Patients’ Association.

Improved quality of life for the elderly is one of the bullet points for this conference on the Societal Impact of Pain in Copenhagen. Dr Chris Wells is president elect of conference organisers, EFIC:

Wells: At the moment 15 % of the population of Europe are over sixty-five, by 2020 that will be over 20%; and by 2030 it will be over 25%, so over a quarter of us will be over 65.

The problem is, we know from this survey, and from other surveys, between 20% to 50% of people over sixty-five have chronic pain, so it has a major impact on their quality of life. Some of them have mild pain which they could manage usually very well, but the most common pain is moderate pain and a very significant number have severe pain.

The cost is in quality of life because most people over 65 aren’t working, but with the aging population of course it is envisaged that people over 65, some of them are going to have to work, because we can`t afford to pay the pensions of everybody over 65 with a longer life expectancy.

So I think, yes, in the future people will have to work on longer, so that there is an economic impact to being over 65 and having pain, but most important is the quality of life. After years and years of working hard, bringing up a family, earning a living, then you get some peace and quiet and retirement and it’s blighted because you have chronic pain. Most people over 65 have more than one chronic illness. High blood pressure, depression, as well as pain, and that makes the treatment of pain even more difficult because some of the treatments that we want to use, some of the drugs we want to use we can’t because of the other conditions.

The problem being that the multi-morbidity prevents adequate treatment because there aren’t any special systems set up to deal with people like that. Most healthcare systems only deal with one problem. Pain clinics are used to dealing with people with multi-morbidity, with the elderly patients with pain with all of the problems and what we need is more access to qualified doctors, staff, nurses, psychologists who know how to manage chronic pain in the elderly.

Evans: Dr Chris Wells, president elect of EFIC.

Here’s John Lindsay of Pain Alliance Europe once again.

Lindsay: One of the things about chronic pain when I think of it: it is the only condition that I’m aware of where you the patient tell your medical consultant that you have this condition. You’re diagnosed with other conditions. If you have cancer, cystic fibrosis, multiple sclerosis, motor neurone disease, you are diagnosed by the physician.

Chronic pain is the only one where you go into your physician, your GP or your consultant and say, ‘I have chronic pain, can you help me?’ There are no diagnostic tools, so the medical profession just have to accept that what the patient is saying is 100% correct.

I was speaking to a consultant last night who specialises in the treatment or management of pain. He said in twenty years treating people with chronic pain, he has come across two people who, if you like, were ‘con artists’ who pulled the wool over his eyes. He said that’s all, because people in pain are not going to wait six months for an appointment, are not going to go to pain management programmes, are not go to pain management clinics, are not going to attend workshops in self-management techniques. So generally for the person complaining, who says ‘I have severe chronic pain’, they have chronic pain and have to be believed.

Lisa Mickenan: I am Lisa Mickenan I come from Finland. I got a slipped disc in ‘98. I was just doing my thesis at Plymouth University and I didn’t understand the problem was so serious and I didn’t go and see the doctor in England, because I couldn’t tell or say the names of the medicines which I’m allergic too. So I went to see the doctor in Finland and on that part I was using my own pain killers which affected my stomach and the doctor in Finland just tried to heal my stomach. And he didn’t believe me when I said that there’s a problem at my back – that something is wrong.

Finally, he gave me a paper to hospital, and on that paper he writes after: ‘a little bit angry young woman wants to be referred to consultant.’ I caused problems at the hospital again because the doctor didn’t believe that the pain is as it is. The doctor just said that the pain can’t be as bad as I said it is. Finally when they took magnetic pictures they found out there is a massive collapse between the vertebrae and they operated but the damage had already happened and I lost some nerves from my leg and also some muscles from my leg.

Lindsay: I think one of the biggest issues facing all people with chronic pain is not being believed: not being believed by your physician is very disappointing but not being believed by your spouse, your partner, your loved one, family, friends is really devastating and leads to isolation, loneliness and I know very recently there was a survey carried out in Australia where they have concluded that possibly as high as 21% of all suicides have a pain element related to them; that the person can no longer live with the pain, so the whole area of not being believed, the isolation, the loneliness, family not believing is a really serious issue that needs to be dealt with.

Mickenan: I have lived with the pain now for 14 years, I would say I have lost everything I used to work hard and now I have no possibilities to work. I am a graduate from university but there is no use for my education. I can’t have children, so I can’t have family. I lost my income because I can’t work, but I am one of the lucky ones: I haven’t lost even one friend during these years, they are still there, good friends.

Evans: Lisa Mickenan of the Finnish Pain Association. The issue of employment is one that was addressed by Stephen Bevan at the Societal Impact of Pain conference. He’s director of work force effectiveness at the Work Foundation. It’s a research and policy organisation based in London. And one of their projects, ‘Fit for Work’, looks at how musculoskeletal pain affects the health of the European workforce.

Bevan: Chronic low back pain is one of the biggest causes of sickness absences from work. It has a massive economic impact about £12 billion a year in terms of the wider European economy and it can also affect people’s psychological well-being, their mental health and its one of those areas where physical and psychological health combine together and so chronic pain associated with things like fatigue have a big impact not just on and sickness absence from work but the speed with which people return to work. We’ve seen from some pan European surveys recently, for example, that the proportion of European workers who report that they are in jobs that require repetitive movements or require difficult postures, after a long period of decline, is now going up again in some occupations and so I think there are things about working conditions and the design of jobs and the design of the working environment that could still be improved to make sure that people are at lower risk of developing chronic pain caused by their work.

Most employers are very reluctant to think creatively about how they can make adjustments to the workplace to accommodate people with long term and chronic conditions and yet the evidence is that the cost of doing so is very, very small. I have to say that, if you are an employer and one of your existing staff has a new diagnosis, it’s more likely that you are going to be more sympathetic and make changes to their working environment. But if you are recruiting and one of your candidates happens to have a long term condition that involves chronic pain it is quite unlikely that you will recruit them in the first place. So for me, the big challenge is to get employers with staff that already have these conditions to recognise the skills and attributes these individuals bring to the business and make very tiny adjustments – often that’s all that’s needed – and they are often very inexpensive, and so the more we can do that, the more we can allow people to stay in work much longer.

Evans: Stephen Bevan of the Work Foundation.

I’ll just remind you of Pain Concern’s usual words of caution that whilst we believe the information and opinions on Airing Pain are accurate and sound, based on the best judgements available, you should always consult your health professional on any matter relating to your health 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.

Don’t forget that you can download all editions of Airing Pain from www.painconcern.org.uk. You can also get CD copies direct from Pain Concern. All the contact details are at the web site including those to put a question to our panel of experts, or just to make a comment about the programmes via our blog, message board, email, Facebook, Twitter or pen and paper.

The last words from the 2012 Societal Impact of Pain conference go to Professor Hans Kress, President of the European Federation of the International Association for the Study of Pain Chapters, and, representing the host nation, Pia Frederiksen of the Danish Association of Chronic Pain Patients.

Frederiksen: I am so grateful; it’s very important that such a big event as the Societal Impact of Pain is here in Copenhagen and also because our society in Denmark is far behind in this pain issue. So, we do hope that it will increase some inspiration for the politicians so they can see that it’s a very big effort. We do have problems. It’s not ok that so many of us are outside the labour market; it’s not ok that so many of us end up on benefits or sick leave or early retirement. We really do want to contribute to society, but society has failed to help us.

Kress: We have been very proud that the European Commission for Health and Consumer Protection has taken patronage of our initiative, which shows that now we are also existing in the minds of our politicians. And we have at least achieved that not only the media but also the politicians have recognised that chronic pain is a problem for the future development in our societies and something that has to be solved by our national healthcare systems, and something that has also to be taken into consideration when we are talking about our strategic plans for 2020 for all our European counties.

Contributors:

Professor Hans Kress, President of EFIC
Dr Beverly Collett Chair of the Chronic Pain Policy Coalition in the UK
John Lindsay, Vice President of Pain Alliance Europe
Justino Marasi, Manager of a company providing health care services in Italy
Anne Lloyd, trustee of the Patients’ Association, UK
Dr Judith Hooper, Director of Public Health for NHS Kirklees and Kirklees Council
Dr Chris Wells is president elect of EFIC
Liisa Mikkonen, Finnish Pain Association
Prof Stephen Bevan, Director of Work Force Effectiveness, the Work Foundation
Pia Frederiksen, the Danish Association of Chronic Pain Patients.

Evaluating the cost of chronic pain to society and improving public health policy on pain

This programme was funded by an educational grant from Grünenthal.

In this programme we explore issues affecting the management of chronic pain across the diverse societies of Europe.

In May 2012 over 400 delegates representing 35 European countries met in Copenhagen at the third Societal Impact of Pain conference organised by EFIC (the European Federation of the International Association for the Study of Pain Chapters). Airing Pain was there to listen in and speak to patient groups and leading experts on pain and public health policy from across the continent. We hear how chronic pain accounts for 500 million lost working days in the European Union every year, costing the EU economy over 34 billion Euros.

Contributors:

Professor Hans Kress, President of EFIC
Dr Beverly Collett Chair of the Chronic Pain Policy Coalition in the UK
John Lindsay, Vice President of Pain Alliance Europe
Justino Marasi, Manager of a company providing health care services in Italy
Anne Lloyd, trustee of the Patients’ Association, UK
Dr Judith Hooper, Director of Public Health for NHS Kirklees and Kirklees Council
Dr Chris Wells, president-elect of EFIC
Liisa Mikkonen, Finish Pain Association
Professor Stephen Bevan, Director of Work Force Effectiveness, the Work Foundation
Pia Frederiksen, the Danish Association of Chronic Pain Patients.

The challenges of improving pain management in Northern Ireland, and raising awareness of chronic pain among businesses

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A special edition of Airing Pain, covering the 2012 Northern Ireland Pain Summit, organised by the Pain Alliance for Northern Ireland. There we interviewed representatives from government and the voluntary sector, health professionals, and of course patients.

Patients attending the summit give us their stories and say what brought them there and Tania Kennedy, Director of Business in the Community, sets out her thoughts on how the world of business can better take account of chronic pain.

Dr Pamela Bell, Chair of the Pain Alliance for Northern Ireland, and Kate Fleck, national Director for Arthritis Care in Northern Ireland, conclude with their thoughts on the ‘road map’ for action following of from the pain summit.

Issues covered in this programme include: Employment, workplace barriers, policy, raising awareness, misconceptions, patient experience, healthcare funding, arthritis, young people, multiple sclerosis, accessibility, the role of employers, community healthcare and exercise.

Paul Evans: Hello I’m Paul Evans and welcome to Airing Pain, a programme brought to you by Pain Concern, the UK charity that provides information and support for those of us living with pain. This edition is financed by Grünenthal.

Pamela Bell: At the end of the conference for me it is important that the Health Minister, the Health Committee and the Northern Ireland Assembly take on board the asks of the road map that’s been developed and really putting pain up the health agenda throughout Northern Ireland.

Evans: In May 2012 Pain Alliance Northern Ireland organised a summit to raise awareness of the extent of the problem of people living with chronic pain. Janet Graves covered the event for Pain Concern; she started speaking with Chief Medical Officer for Northern Ireland, Dr Michael McBride.

Dr Michael McBride: We know how common chronic pain is; we know that somewhere in the region of 1 in 5 people in Northern Ireland suffer from chronic pain and I think it comes as a unique and indeed challenging opportunity because we’re at, I suppose, a crossroads in terms of provision of health and social care in Northern Ireland. We have a new blueprint, a road map for the future direction of health and social care in Northern Ireland called ‘Transform Your Care’ which our Health Minister Edwin Poots has endorsed. We’ve recently launched a long-term condition strategy, both of which are very relevant in terms of how we improve because I think that’s what it’s really about, about improving the care that we provide people living with chronic pain.

I mean, how do we empower patients living with chronic pain, giving them the right skills and knowledge and information to manage their own pain better, to give them their sense of control back over the management of their pain, which I think is vitally important I mean there’s nothing as disempowering or as disabling as chronic pain. I think also its about how we ensure that we raise the level of awareness amongst those health professionals working in primary care. It’s about ensuring that we have a phased approach to the management of people living with chronic pain: a better integration of services; a better integration between our GP practices and indeed the specialist treatment that can be provided in a hospital environment with all of the professionals that input into that.

Chronic pain is a challenge because of the diversity of people affected by and living with chronic pain because again it can originate from a wide variety of conditions, whether we’re talking about arthritis, diabetes, people who have had, or are having, problems after a stroke, people living with side effects of a drug treatment, for instance, with cancer which can cause very painful neuropathy. So it impacts on such a wide range of conditions, that the co-ordination of that and the standardisation of a more methodical and integrated approach to supporting people living with pain and ensuring that they get access to the right services at the right time by health professionals who are both skilled and knowledgeable in terms of the management of chronic pain and, most importantly also, they can decide when they have reached the edges of their knowledge and skills and when it’s appropriate to refer on to someone with more specialist knowledge.

And I think these are the challenges in Northern Ireland, how do we reduce the patchy availability of these services, how do we make the best quality of care and experience uniform throughout Northern Ireland and I think the challenges would be no different in my view than across the rest of the United Kingdom. I mean I don’t think there’s any doubt in what we all aspire to – whether that’s someone living with chronic pain, whether that’s someone caring for someone living with chronic pain, whether it’s a doctor, nurse or health professional working in primary care, whether it’s a voluntary sector organisation, whether it’s a commissioner of services, or an official in a department or a minister – we all want the same thing, which is the best care we can possibly provide for patients living with chronic pain in Northern Ireland.

Dr Pamela Bell: I’m Dr Pamela Bell, I’m formerly a consultant in anaesthesia and pain medicine working at Musgrave Park Hospital for most of my career and I’m currently Chair of the Pain Alliance for Northern Ireland and that is a group that is focused on providing support for patients with chronic pain. The conference today is of real importance, the very first time that we have in Northern Ireland brought together those leaders and decision makers in health care, including the Minister for Health, Social Services and Public Safety and the Chief Medical Officer and the most senior commissioners, together with health care providers and clinicians, patients, their families and carers and the voluntary and community sector – and I’m particularly pleased since chronic pain is really about the impact on how we live and work that we also have representatives from business and the community talking about how work can be good for our health and how employers need to value patients or employees who have chronic pain but still contribute significantly to the workforce. So yes, a big problem for health care, a big problem for social care, but more broadly a problem for employers, for employees and for society at large.

So I see the Pain Alliance as being the catalyst for all of this, the bringing together of perhaps rather diverse interests and saying well the commonality, the thing we all join together in, is wanting to have improvements in those services for patients with chronic pain.

Evans: Dr Pamela Bell, Chair of the Pain Alliance for Northern Ireland, organisers of the 2012 Northern Ireland Pain Summit.

Now in terms of services provided for people with chronic pain in Northern Ireland, there are differences between what each Healthcare Trust provides, probably as you’d find across the whole of the UK. But there’s one statistic that does surprise me. Dr William Campbell is Consultant in Anaesthesia and Pain Medicine in Belfast.

Dr William Campbell: Statistics show that there are perhaps as many as twice the number of chronic pain sufferers, probably mainly associate with spinal pain, in the North of Ireland compared to southern parts of the British Isles. This could well be associated with lifestyle – patients don’t have the opportunity to get out just as much in Northern Ireland, could well be even as simple as the weather being much poorer, several degrees cooler, wetter weather but the ability to get out and walk and mobilise the spine can have two beneficial effects: one being that it actually mechanically helps move the spine much more readily to keep the flexibility up and, in addition to that, the psychological wellbeing of the individual, just to get out and about.

From the point of view of help from the various Trusts in relation to both funding and from the point of view of services that were available. From the point of view of funding, if they were taken into account with the Trusts’ budget, it actually worked out at something in the region of 40 to 50p in every thousand pounds was spent on delivering pain services. Now that wouldn’t take into account separate physiotherapy and rheumatology, nor would it be likely to take into account the likes of their analgesic budget from the pharmacy. But other aspects would be the availability of various services within each Trust. So although pain clinics and pain management programmes have developed and gradually built up in each of the Trusts within Northern Ireland, there is still scope for increased activity.

Ideally the Conference will highlight the fact that there is a relatively small amount of funding put into pain services, especially chronic pain services and that should be taken in context with the fact that one of the commonest causes to attend a general practitioner is with pain and musculoskeletal pain –it practically equals all the other problems added together. So whenever you consider that there’s only roughly 50 pence in every thousand pounds spent on pain clinic services it’s literally a drop in a jug of water, it’s really really very little. At the end of the Conference we’d hope that over the coming months and years we would see an increase in the availability of both physiotherapists and psychologists to help provide multidisciplinary support for patients as well as some improvement in the facilities for medical staff to provide a better service for patients.

Bell: One of the reasons why a Conference like this is so important at this time is that, in the wider sense, health and social care is being re-drawn for Northern Ireland and following the publication of the Compton Report it is clear that it is the intention of our Department of Health that services will be available to patients much closer to their home and within their own communities and that this care will be focused on their individual needs. So when we look at the provision of Pain Clinics as such, mostly, in Northern Ireland, based in hospitals and widely scattered in the province with more gaps in provision perhaps than coverage, then we can clearly see that there is not enough local service.

Now, changing from where we are at present, into a situation where much of the care is delivered within your general practitioner’s office or within your community, will require a good deal of education. Education not just of the general practitioners and other health care professionals within the community, so that their level of skill in managing and indeed diagnosing the presence of chronic pain will really be lifted to an extent where patients notice a real difference in finding it much easier to get the right treatment at the right time.

Dr Jim McMullan: My name’s Jim MacMullan, I’m a GP in Tynan, just outside Armagh, and I’ve worked in the chronic pain service in Northern Ireland for over 10 years now. Pain is the third most common reason for a person to come to their GP and chronic pain sufferers are five times more likely to come to their GP than someone who doesn’t have chronic pain, so that represents a huge burden and a huge challenge to general practice. What is sometimes lost in the ether is that chronic pain is a chronic disease, very much like diabetes or asthma or epilepsy and by definition often cannot be cured but requires management. This management requires a bio-psychosocial holistic approach to the person and sometimes prescribing a tablet is not enough for these people.

When they come to me in secondary care clinics a lot of our patients expect an intervention, an injection, a drip, an operation, a scan, something, you know, very much on the medical model and, as is often the case after a full assessment, it transpires that there’s much more going on in their life than just the pain – there’s the social issues, there’s the financial issues, there’s the psychological issues and the mental health issues.

There was an article that the BBC news covered a few days ago of the Scottish experience in treating all chronic diseases with chronic pain included in primary care head on by the Dundee and Glaswegian professors of general practice. And they pointed out that these complicated complex individuals with multiple medical problems are often managed in a disjointed and fragmented way and that, rather than investing in more and more specialists for these people, perhaps there should be a case for more generalists to look after the whole patient, rather than neurologists for one bit, orthopaedic surgeons for another bit, rheumatologists for another bit etc. etc., gynaecologists, urologists – more generalists required for the joined-up thinking overlooking the entire process for the entire patient rather than focusing on one anatomical bit as it were.

When the patient gets explained to him what is going on here and what the evidence is for their condition and that injection therapies and extra drugs may actually not help the condition and technically could make them worse with side effects and that there are other things out there that does not involve taking extra drugs, if they’re willing to engage with the pain management programme, with the psychologists, with the physios, with the OTs, with the nurses and doctors that at the end of that there they almost invariably will feel better. A lot of them, a little light comes on and they say ‘Yeah, I’ll have a go at that.’ Then of course there are some people who are very resistant to this and seem to think that all you’re saying it’s all in my head doctor, which is absolutely not the case.

But, it’s almost self-selecting – those who are willing to embrace this whole concept of acceptance and self-management and looking after themselves will always do much better than those who are in denial and who sit back and want to be referred on for another investigation or another injection or another test. They have not reached that level of acceptance and the real challenge is getting the resistant people to accept that there are things out there other than more drugs, more interventions, more injections, more drips or more scans.

Evans: Jim McMullan.

Now, before we continue I’ll just remind you of our usual words of caution that whilst we believe the information and opinions on Airing Pain are accurate and sound, based on the best judgements available, you should always consult your health professional on any matter relating to your health and wellbeing. He or she is the only person who knows you and your circumstances and therefore the appropriate action to take on your behalf.

Back to the 2012 Northern Ireland Pain Summit – and as you heard, delegates included representatives from every sector of the pain community, from Government, health professionals, the voluntary sector and of course, patients. Kate Fleck is National Director for Arthritis Care in Northern Ireland.

Kate Fleck: One of the examples I gave at the conference this morning was the impact on parents living with a child who’s been diagnosed with arthritis and the impact on the whole family is immense. You already are a parent of probably one or two or three children so it becomes more complex, you’ve got to deal with health professionals, hospital visits, you have also the priority of your other children – the ones who are not living with a long term chronic condition – whereas your child with a long term condition who very often has pain; and there’s nothing worse for a parent seeing their child in pain and feeling helpless.

Again part of the work we do in Northern Ireland, we’ve got a really good parent support group and we run very positive programmes for children: positive future body image; take them away on physical activity weekends and say ‘yes you can’, even with arthritis and even if you hurt you can actually take part in these things as long as they’re geared and done in a safe environment. So I think for parents and families with children with arthritis it has a real impact and I think the other side of that then is the family member who becomes a carer. And, again, it is difficult for people living with long term conditions to see their spouse or a family member becoming a carer, having to give up their independence, having to maybe give up their work to look after that and really guilt sets in and for the carer, you know, they lose part of themselves in that whole caring role. Most of the carers don’t mind but it changes the dynamics of the family and the relationships.

Nancy Toner: Hi I’m Nancy Toner from Belfast. I was diagnosed with rheumatoid arthritis when I was 16, a very scary prospect at that age. I have since then been through lots of hospital appointments, medications, operations. A long-term condition, rheumatoid arthritis, it never really leaves you. I’ve had 17 joints replaced and they’re all working well but I know there’ll be more.

When I was 16 I didn’t fully understand what it was going to mean to me. My Mum understood more and became quite upset. I now know why, it’s with you every day; it’s affected all parts of my life, my working life, and my social life. I have a family now and my children don’t know me to be pain-free; they know I need help in all areas of the housework. My husband has been a great support: he knows by looking at me if I’m in pain, if I’m having a bad day or if I’m having a good day. I’ve been in pain longer than I haven’t been in pain because I’m now 61 – but I’ve grown up with it and it’s always been with me as a sort of companion. Sometimes it can be a difficult companion but I have learnt to cope with what I have and self-manage my situation and I feel that I am in control of it most of the time.

O’ Loughlin: I’m Naomi O’ Loughlin, I work voluntarily with the MS Society on the Northern Ireland Council and I’m Vice-Chair of my local branch. When a family member suffers from chronic pain it doesn’t just impact on the individual, it impacts on the whole family, sometimes you end up with a partner, spouse or whatever taking on a role of carer; and that’s not something that they signed up for. It can have a lot of emotional pressure, a lot of financial pressure to, your career is impacted, sometimes you have to give up your work – you’ve got that loss of earnings.

With a condition like MS it can strike at a young age; I was 24 when I began to exhibit the symptoms of MS. I mean, we’d just taken out a mortgage, we’d just bought the house, I had two children of 2 and 3 years old – your whole world just implodes around you, you try and make sense of that, it’s very, very difficult and there’s an awful lot of pressure on your relationships and a lot of times people even just slightly outside your family group don’t see the pressure. I suppose you have to learn to ask for a wee bit more help and explain your circumstances because a lot of people just think ‘oh I can manage this on my own’. But wee bit by wee bit by wee bit you know, they do get eroded, your self-confidence goes and you do sometimes just need a wee bit of help.

Evans: Naomi O’ Loughlin, a volunteer with the MS Society.

Tanya Kennedy is the workplace director with Business in the Community. It’s a not-for-profit business membership organisation promoting corporate social responsibility. So where does the world of big and small business fit into the management of chronic pain?

Kennedy: It is well proven now that it is the responsible businesses that are the most successful and part of being responsible is looking after the well-being of your employees and being an inclusive and a happy work environment so people are productive. So in terms of that, what employers and workplaces want to do is identify people with chronic pain and find solutions so that they will be happy and productive at work; it’s good for the person, it’s good for the business.

I think it’s very important that we have this conference in Belfast today because when I was asked to talk about the impact that the workplace can have with chronic pain, I was absolutely astounded at the lack of information that was available to employers, yet workplace as a setting is a huge opportunity to make a real difference to people’s lives in terms of their health and well-being and that includes chronic pain.

There’s a startling statistic that the cost of chronic pain to a business is likely to be higher than the cost of diabetes and heart disease put together. Yet at this point in time employers are investing huge amounts of time and money encouraging people to improve their lifestyle habits. Now if they can take the same approach to what will change attitude towards chronic pain and encourage and support people with chronic pain to remain at work, the return on investment for that could be phenomenal and employers really can make a difference to the lives of people with chronic pain because 45% of people with chronic pain don’t work at all. However, those who are in work don’t at this point in time have the confidence it appears to discuss with their employers what their own personal needs are. Yet employers want skills into the workplace, particularly at the moment that people with chronic pain can offer them simply by making some adjustment.

O’Loughlin: I think it’s a brilliant idea to try and encourage employers to bring skills into the workforce. There’s an awful lot of people out there that don’t conform to the traditional 9-5 – they can’t – but they would so love to be part of it and everybody has their own unique skill-set and being able to give something back… you need a focus, you need a purpose for life and that’s part and parcel of managing your condition – whether it’s for financial gain or not, but you need to be doing something that makes you happy and makes you feel as if you have a purpose so your bringing home money at the end of the week too, that’s an added bonus, but it’s a lot to do with how you feel about yourself as a person and your self-worth as well.

Kennedy: There is a lack of understanding I would suggest at this point in time of what chronic pain can be and we heard from great speakers today who live with chronic pain as to people’s reactions to the adjustments that are made for them so it’s up to employers to educate the people in the workplace. It’s good for them too to help and be sympathetic towards people with chronic pain and to appreciate how good life is without it.

There’s a big gap at the moment in my experience in the workplace and that is with line managers and supervisors. We all start work in one form or other when we work and then perhaps we’re promoted and we don’t know how to take responsibility for people because it doesn’t come naturally in most of us. So employers need to look at that part of their population, educate them in everything around diversity, including chronic pain – there are lots of different reasons that people are different, so that they can empathise and make the work experience for everybody at work the best it can be. It’s a change in attitude more than a cost. There may be some costs involved with some individuals, however, it’s a shift in attitude and it’s a shift in workplace culture to one that’s accepting and that doesn’t cost anything and not only that, in shifting that culture it will probably add to the success of the business.

Evans: Tanya Kennedy, the director of Business in the Community.

Now the 2012 Northern Ireland Pain Summit was organised by the Pain Alliance for Northern Ireland and as part of their work and key to the Summit, was the development of a road map for action. Pamela Bell again…

Bell: We hope that by listing things that might be achievable, that in fact we can look back and see what progress is being made. So, given the changes that are likely to occur, we feel that education – education for healthcare professionals and perhaps, particularly for those healthcare professionals in the community, is going to be key to patients seeing the early changes. So that may mean that when they go to their General Practitioner, rather than simply being given a prescription for yet another painkiller, that they might be signposted to a community group for support – exercise or walking group – that they might get to a physiotherapist who can help them overcome fear of movement and thereby help with their rehabilitation.

Fleck: Given some of the statistics that were given out at the conference this morning around the lack of pain services in Northern Ireland, it’s essential that clinicians get more training on pain; that they also learn I think to work in partnership with the voluntary sector who have lots of expertise in running self-management programmes and refer to us. I mean I can talk from a personal experience where I had a consultation 11 months previous for a condition called bursitis and 11 months on I only got injections in my hip – 5 minute injections but an 11-month wait. You know, that really is kind of unacceptable treatment and I am not the only one by a long shot waiting on those sorts of times for treatment and medical intervention.

Bell: There’s much change going on and someone needs to lead that change. So one of the other things that we have suggested would be the creation of a lead clinician for chronic pain, perhaps similar to the lead clinician role in Scotland, so that someone has oversight, someone can keep the train on the tracks through all this change, someone can look at the gaps in the services and say ‘well this is perhaps where we ought to invest and this is perhaps where we can let things sit because they’re doing quite nicely thank you’. But key to successful change is good leadership and in the absence of good leadership I’m not quite sure how effective that change can be. One of the other aims in our road map is to encourage patients in their self-management of their condition.

Fleck: The message from me really is around the self-management agenda, the importance of that, if we’re going to have waiting times and people are waiting longer, there are things that people can do for themselves. They can pick up new skills, new ways of managing pain that don’t mean always rushing for the pill bottle. It’s about learning breathing techniques, relaxation techniques, a little light exercise, getting out in the fresh air, trying to encourage socialisation, not sit back in isolation because there’s nothing as bad as feeling isolated, despairing. You do need contact; if you can learn and be supported to learn how to self-manage I think it’s a great bonus to someone living with pain.

Evans: Kate Fleck, National Director for Arthritis Care in Northern Ireland and before her Dr Pamela Bell, Chair of the Pain Alliance for Northern Ireland, organisers of this 2012 Northern Ireland Pain Summit.

And before we end this edition of Airing Pain, I’ll just remind you that you can still download all editions of Airing Pain from www.painconcern.org.uk and you can also get CD copies from Pain Concern. If you’d like to put a question to our panel of experts or just make a comment about these programmes, then please do so via our blog, message board, email, Facebook, Twitter or pen and paper. All the contact details are at our website once again www.painconcern.org.uk.

We’ll end this edition of Airing Pain with the views of Nancy Toner and Naomi O’Loughlin.

Toner: There are some very positive messages coming out of today. I think that a lot of the people here today maybe are only realising the importance of it as they go away today and take the information away with them.

O’Loughlin: I have a rheumatologist who said to me once ‘I would like you to speak to students, because you know more about rheumatoid arthritis than I do’ – and this was a rheumatologist. I was quite shocked, but he said, ‘well you’re living with it, I’m not’. So these conferences are good at bringing awareness to politicians, GPs, everyone here today has learnt quite a lot about chronic pain and how the public have to live with it.

Contributors:

Dr Michael McBride, Chief Medical Officer for Northern Ireland
Dr Pamela Bell, Chair of the Pain Alliance for Northern Ireland
Dr William Campbell, Consultant in Anaesthesia and Pain Medicine in Ulster
Jim MacMullan, a GP from Tynan, Co. Armagh
Kate Fleck, National Director for Arthritis Care in Northern Ireland
Nancy Toner, patient representative
Naomi O’ Loughlin, volunteer with the MS Society
Tanya Kennedy, Director of Business in the Community.

The challenges of improving pain management in Northern Ireland, and raising awareness of chronic pain among businesses

This programme was funded by an educational grant from Grünenthal.

A special edition of Airing Pain, covering the 2012 Northern Ireland Pain Summit, organised by the Pain Alliance for Northern Ireland. There we interviewed representatives from government and the voluntary sector, health professionals, and of course patients.

We hear about the needs of patients and provision of pain services in Northern Ireland from, among others, Chief Medical Officer, Dr Michael McBride, and Dr William Campbell, Consultant in Anaesthesia and Pain Medicine at Ulster Hospital, Dundonald, Belfast. Patients attending the summit tell us their stories and say what brought them there and Tanya Kennedy, director of Business in the Community, sets out her thoughts on how the world of business can better take account of chronic pain.

Contributors:

Dr Michael McBride, Chief Medical Officer for Northern Ireland
Dr Pamela Bell, Chair of the Pain Alliance for Northern Ireland
Kate Fleck, national director for Arthritis Care in Northern Ireland
Dr William Campbell, Consultant in Anaesthesia and Pain Medicine at Ulster Hospital, Dundonald, Belfast
Tanya Kennedy, director of Business in the Community.

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

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

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

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

Paul Evans: Hello I’m Paul Evans and welcome to Airing Pain, a programme brought to you by Pain Concern, the UK charity that provides information and support for those of us who live with pain. This edition’s been made possible by Pain Concern’s supporters and friends. More information on our fundraising efforts is available on our Just Giving page at www.painconcern.org.uk.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Evans: So what should people look out for?

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

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

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

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

Johnson: Thank you very much, thank you.

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

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

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

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

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

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

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

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

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

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

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

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

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

Briggs: Yes.

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

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

Evans: What sort of ideas?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Our usual words of caution are that whilst we believe that the information and opinions on Airing Pain are accurate and sound, based on the best judgements available, you should always consult your health professional on any matter relating to your health or wellbeing. He or she is the only person who knows you and your circumstances and therefore the appropriate action to take on your behalf. And that goes for information and guidance you will find from other sources, particularly the internet. Emma Briggs to close the programme.

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

Contributors:

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

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

This programme was funded by Pain Concern’s supporters and friends.

Contributors:

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

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