“I know my pain doesn’t mean I’m damaging myself – but I still have pain”

In the excitement of helping people understand more about pain neuroscience, which I truly do support, I think it’s useful to reflect a little on the history of this approach, and how it can influence the experience people have of their pain.

If we go right back to the origins of pain self management, in the groovy 1960’s and 1970’s – the first truly significant work in chronic pain self management came from Wilbert Fordyce (Fordyce, Fowler & Delateur, 1968). Bill Fordyce was a clinical psychologist working in the Department of Physical Medicine and Rehabilitation, University of Washington, Seattle, Washington. He noticed that when people were given positive reinforcement (attention, and social interaction) for “well” behaviour, and ignored or given neutral responses to reports of pain, their “up-time” or activity levels increased. Interestingly for occupational therapists, in the paper I’ve cited, occupation was used as an integral part of the programme and occupational therapy was a part of the programme (somewhat different from most clinics nowadays!)  Thus the operant conditioning model of pain behaviour and disability was first developed.

As practice progressed, clinicians began discussing the gate control theory of pain to help people understand how incredibly powerful descending pain modulation could be. Included in those discussions was the distinction between “hurt” and “harm” – that simply because something hurt, did not mean it was a sign of harm in the tissues.

As the 1980’s wore on, interdisciplinary pain management programmes became popular, with much of the work involving helping people reappraise their pain as “noise in the system”, and encouraging participants to develop strategies to increase activity levels and at the same time employ approaches to “close the gate” and thus reduce pain intensity.  I started working in pain management in the mid-1980’s when not only did I develop a patter to explain gate control, chronic pain, the relationship between the brain and what was going on in the tissues, I also started using the case formulation approach I still use today.

The key effects of this approach were pretty profound: people said to me they had never realised their pain wasn’t a fixed thing. The commonplace examples I used to explain why the relationship between their pain and what was going on in the tissues was complicated and uncertain made sense – everyone had heard of phantom pain, everyone knew of people who played rugby and didn’t feel the pain until after the game, everyone had heard of hypnosis for pain, and people also recognised that when they felt bad, so their pain felt worse but when they were busy and happy doing things, their pain was less of a problem.

I’ve attached one of the original examples of “explaining pain” to this post.simple-explanation-of-biopsychosocial-model-of-chronic-pain

Now the interesting thing is that during the 1970’s, 80’s, and 90’s, there was still a lot of talk about ways to abolish chronic pain. Loads of nerve cutting and burning, lots of surgical fusing and metalwork, heaps of pharmacological strategies were all the rage. People felt sure there was a way to stop all this chronic pain from appearing – and the answer was to begin early, before pain behaviour was established, before people got the wrong idea that their pain was intractable.  As a result the “yellow flags” or psychosocial risk factors for chronicity were developed by Kendall, Linton & Main (at least in NZ). This created a great flurry of ideas about how to “get people moving”, and “assess and manage yellow flags” which have subsequently flourished and become a veritable rainbow of flags.

Sadly, I haven’t seen any significant reduction in the rates of chronic pain, or rates of disability associated with chronic pain – although there do seem to be fewer people having five or six or more surgeries for their lower back pain. Instead, there’s a far greater emphasis on “explaining pain” from the beginning – a good thing, you’d think! But hold on… a recent conversation on Facebook suggests that the purpose of explaining pain may have been misconstrued, perhaps even over-interpreted…

When we begin to untangle some of the elements involved in our experience of pain, we can see that at least part of the “yuk factor” of pain lies in our appraisal or judgement of what the pain signifies. Let me give you an example – say you were walking down a dark alley and someone approached you with a loaded syringe. They stab you with the needle! What do you do? Well – probably you’d run for the nearest Emergency Department, and my bet is that you’d be well aware of the sting of the needle as it went in. Now think about the last time you got your flu jab – same stimulus, but your response is likely to be quite different. You’ll notice the sting of the needle, but it will quickly fade, and you’ll generally be calm and matter-of-fact about it. Your appraisal of the sting is quite different from what I guess you’d be thinking if you’d been stuck by a needle in a dark alleyway.

When people are asked to rate their pain intensity, at least some of the “score” given on a visual analogue scale can be attributed to the “distress” portion of the pain experience. The part that we can attribute to “what this experience signifies to me”. And this is the part that an explanation about pain can influence – and thus pain intensity ratings can and do drop once a helpful explanation is given. BUT it does not change the biological elements, nor the “attention grabbing” aspects of pain (well, maybe the latter can be a little bit changed because if we don’t think of the experience as representing a threat, we can more readily put it aside and focus on other more important things).

Why is this important? Well, in the enthusiasm to explain pain to everyone, I think sometimes the application can be a bit blunt. Sometimes it becomes an info-dump, without really taking the time to listen to what the person is most concerned about. It may not be that they think their pain represents harm – instead it may be that they’re not sleeping well, or that they’re finding it hard to concentrate at work, that they’re worried about the effect of pain on their ability to drive safely. Because quite apart from the “yuckiness” of pain, pain intensity also has an effect on cortical processing space. And an explanation of the mechanics doesn’t take away the poor sleep, the worries about work, or make it easy to drive home. And there are times when the person remains unconvinced by an explanation – or has “head knowledge” but it makes no difference to what they’re doing. From our own experience in life, we know there’s a big difference between reading about something – and actually doing it. Experiential learning trumps “head knowledge”

Do I think it’s important to explain pain neurobiology? Most of the time, yes. But we need to do this with care, compassion and sensitivity.  We need to think about why we’re doing it. And we need to recognise that for some people, explanation doesn’t change their pain intensity, it just changes their judgement about the meaning of their pain – and if their concerns are about the effect of pain on their life, then an explanation may not be the most useful thing. And most of all, we need to remember that reducing pain intensity is not really the most important outcome: doing more is probably more important.

 

Fordyce, Wilbert E., Fowler, Roy S., & Delateur, Barbara. (1968). An Application of Behavior Modification Technique to a Problem of Chronic Pain. Behaviour Research and Therapy, 6(1), 105-107. doi: dx.doi.org/10.1016/0005-7967(68)90048-X

Okifuji, Akiko, & Turk, Dennis C. (2015). Behavioral and Cognitive–Behavioral Approaches to Treating Patients with Chronic Pain: Thinking Outside the Pill Box. Journal of Rational-Emotive & Cognitive-Behavior Therapy, 33(3), 218-238. doi: 10.1007/s10942-015-0215-x

Being flexible – and how language can make you inflexible

One of the reasons humans seem to dominate our natural world is our flexibility. We don’t have the best eyesight, hearing, strength, speed, stamina or indeed any single attribute that means we’re King (or Queen) of the Jungle, but what we do have is the ability to adapt our environment to maximise the benefits to ourselves. Being flexible means we can find many different ways to achieve a certain goal. It means we don’t get stuck using the same solution when that solution doesn’t work. We try lots of different ways to achieve what we want.

Or are we?

There are plenty of times when I’ve had to firmly remind myself “the definition of insanity is to try doing the same thing again and again, hoping for a different result” I have no idea where that quote came from, but it seems applicable!

Rules

Thankfully, humans don’t have to experience adverse events directly to learn from them. We can learn from what other people tell us. Sometimes what others tell us is helpful – “watch out, walking on a sprain is gonna hurt!” Other times, when what someone tells us is true – but not applicable in our context – we can learn something that isn’t helpful. “Watch out, walking on anything painful is bad”. We can over-generalise or develop an arbitrary rule that is inflexible.

Now this happens all the time. We learn to avoid things that could potentially harm us on the basis of words – parents, teachers, friends, officials all tell us not to do things that could harm us so we avoid dangers without actually having to face them. When we learn this, the function or relationship between events and the way we relate to them gets influenced by what we’re told rather than the actual event itself. So, for example, we learn that when someone tells us off for doing something dumb, we re-experience what it feels like to be ashamed. We don’t want to experience shame, so we avoid situations that look like (function in the same way as) whatever it was we might have done to be told off.

Experiential avoidance and symbolic generalisations

Because we use language to depict these situations and because language can bring back all those associations between the event, object, emotions and experiences, we quickly learn to generalise these relationships – in RFT (relational frame theory) terms, we develop symbolic generalisations. What this means is that even though the actual object, event, emotion etc is not present, just describing something like those things can elicit the same response. And when we don’t like that experience we use every means possible to avoid experiencing it – so we avoid, try to forget, try not to think about it, keep busy, avoid talking about it, pretend it’s not there.

Through avoiding, we develop a whole lot of new associations – “doing this to avoid that” begins to relate “this” to whatever we’re avoiding. So, for example, keeping busy to avoid feeling sad can become a trigger for sad feelings. Sitting stiffly and avoiding bending can become a trigger for worrying about the potential for pain if we do bend.  So, doing things that help us avoid a  negative association can build into a whole set of behaviours that initially help us avoid but ultimately elicit the very things we were hoping not to experience. We become inflexible as the rules we use develop into constraints across a larger range of stimuli/experiences than we originally intended.

Deliberately trying to avoid an experience is tricky, there can be a whole lot of unintended consequences – and no more so than when the negative experience we’re trying to avoid is pain.

Rule-governed behaviour

The thing is, once we develop a rule we begin to follow the rules rather than trying it out ourselves. We place less emphasis on our own experience. Let’s use an example from pain. A person feels uncomfortable bending over while carrying a laundry basket. A kind therapist suggests that bending over isn’t safe, so the person should use “safe handling” techniques. While the therapist is present, the person uses the so-called safe techniques but all the while thinks “if I bend over incorrectly, it must be unsafe because these are “safe handling” techniques”. The person develops a rule. Now when the person begins to move something she uses the “safe handling” techniques but finds it really difficult at times because she has to lift children into the back of the car so they can get into the car seat. She feels worried that she’s not using the “safe handling” techniques rather than feeling what actually happens when she lifts the child.  She instead avoids lifting the child into the car and asks for help. Another person comes along, scoops the child up, plonks him into the car seat and the job’s done.

Rules are helpful, they save us time and harm. They’ve accelerated our rate of learning. BUT they come at the expense of flexibility. There are times when it’s useful not to use “safe handling” techniques – ever tried crawling under your house with a bag of tools? Or get a screaming toddler into the back seat of a two-door car?

Rules also begin to influence the associations we make between events – before the kind therapist advised the person that she should use “safe handling” techniques, the person never thought about how she got the children into the back seat of the car. Now she does. And every time she lifts something off the ground she also thinks about her back. And when she carries her groceries. And bends over to make the bed. And maybe even as she reaches overhead to get something from a cupboard. Or lifts the ironing board and opens it out.

How stuck is that? And how often have we as clinicians inadvertently generated rules that teach our clients to avoid a movement or experience?

Next week: pliance and tracking and what these mean…

Villatte, M., Viullatte, J., & Hayes, S. (2016). Mastering the clinical conversation: Language as intervention. The Guilford Press: New York. ISBN: 9781462523061

Getting stuck with language

In my last post I talked about the ways in which humans learn to relate abstract concepts and experiences together (symbolic relations). I pointed out that we learn to take another person’s point of view as part of developing empathy, and that by interacting with our world we become aware of our place (here) and someone or something else’s place (there). We also learn “me” and “you” (not me), along with near and far, now and then and myriad other abstract concepts that our language can allow us to understand. I suggested that the flexibility of symbolic relations and the relational framing we develop as a result of this skill can be both a help and a hindrance.

Yes, we can remember that a pot can be used to cook, but we also can’t unlearn that relationship. And in being unable to unlearn a relationship we can find it difficult to consider alternative relationships between that pot and whatever else we could do with it. The pot will always be recognised as “something to cook with” although it might also become associated with a receptacle for water, a paperweight, a hat, and even a weapon – but when we’re first asked “what do you use a pot for?” we’ll almost always come up with “cooking”.

In relational frame theory, we develop the ability to empathise or adopt the view of another person based on perspective taking and contextual cues. Contextual cues help us learn the concepts of “I” and “you”  by moving from “here” to “there” to take the place of the other person. If a pen is here, and paper is there, when I go to the paper, it becomes “here” and the pen is “there”. In technical terms this is called deictic framing and this is how kids learn that some concepts only make sense from a given point of view – and here and there are two of those concepts.

How does this relate to pain?

Well, to enjoy being with others, you need to have sufficient deictic framing skills to “stand in another person’s moccasins”, to empathise with their feelings and to be willing to feel those feelings (Villatte, Villatte & Hayes, 2016, p. 32). The thing is, we don’t always want to feel what another person is feeling, especially if we’re angry with them, or they’re feeling sad or some other negative emotional state. We learn to put our ability to empathise on hold to avoid experiencing those feelings. We do this with our own emotions and experiences we’d rather not have. And it’s an adaptive thing – we don’t want to be completely immersed in another person’s experience all the time because it’s difficult to know what our own feelings are vs those of another. We also don’t want to experience all the negative things around us – we learn from them, true, but we don’t really want to feel them all the time. So we develop a skill called “experiential avoidance”. That is, we learn not avoid experiences we’d rather not have.

Experiential avoidance is a cool skill, it’s definitely helpful – it is a process that we use to avoid personal injury, unpleasant people, or situations we don’t feel comfortable in. BUT there’s a catch. Because we relate concepts to one another, we associate words with experiences and memories as well. This is also useful – we can recall the lovely feeling of summer even in the middle of a grey old winter! But at the same time, our most potent learning is often associated with unpleasant experiences, and so for me the sound of a rumbling truck can bring back all the memories of my house being jolted and struck by an earthquake. And because that experience is associated with feeling out of control, helpless, worried and unsettled, those emotions come back along with the memory of the earthquakes. All brought about by hearing a truck rumbling past! And talking about the earthquakes, for some people, is enough to bring back all those same memories.

No wonder, then, for some of the people we work with, just seeing someone walking by is enough to generate the memories, emotions and concerns they experience when they try to walk on a painful foot.

Because of our tendency to avoid experiences that don’t feel good, we naturally try to avoid coming into contact with those stimuli that evoke those negative feelings etc. For some people this can mean avoiding watching images on TV – I remember avoiding watching the tsunami in Japan that happened just after the quakes here in Christchurch. To me the emotions were too raw, I felt too overwhelmed by my own situation to feel I could empathise with those people in Japan.  In some of our clients, just talking about their own painful body can be overwhelming, bringing back unpleasant emotions, memories and thoughts. And indeed for some people, just seeing others doing the things they believe will hurt if they did them is enough to provoke both a negative emotional response AND an flare-up of their pain.

So. Experiential avoidance can help us avoid feeling overwhelmed…but it also stops us experiencing what is happening right now. And I think you can see how it can stop us learning, and it can limit the range of things we’re happy to do – not because there’s any threat right here and now, but because we remember what has happened, and we make predictions of what might happen in the future. The things that might happen – might not happen too! And the things that have happened have already occurred… but our brains are good at joining the dots and being a bit over-protective.

What this means for us as clinicians (and for us as people, too), is that we might need to be gentle but firm, and help people be present here and now. And gradually show people how to be OK with experiencing things that remind us of unpleasant events in the pursuit of something far more useful – flexible responses in a world that is always changing.

Villatte, M., Viullatte, J., & Hayes, S. (2016). Mastering the clinical conversation: Language as intervention. The Guilford Press: New York. ISBN: 9781462523061

What is our goal in pain management?

One of the cool things about having worked in chronic pain management since the mid-1980’s is that I’ve seen a few things come and a few things go.  Some things remain, of course, and the things that seem most long-lived are debates about pain reduction vs living with pain. On one hand, there’s an enormous industry set up to help people reduce their pain experience through pharmacology, injection procedures, surgery, hands-on therapy, movement practice, and novel approaches like brain stimulation and even mirror therapy. On the other hand, there’s a smaller but equally well-established industry established to help people live with their pain, usually involving self-management of some sort and following a cognitive behavioural approach.

The two seem almost incompatible in many respects – why would someone choose to live with pain if their pain can be reduced or alleviated? What are the ethics of not offering pain reduction if it’s available? Why focus on hard work learning to live within the constraints of pain if there’s a way to get rid of it?

I wonder if it’s time to look at the underlying reasons for offering pain management. What is the goal? (BTW occasionally I might write “our” goal – and I do this deliberately because I think there are assumptions made by people who live with pain, and treatment providers, that may not always be explicit).

Why do we offer pain treatments?

Looking beneath the “oh but it’s a good way to earn a living” economic argument, I think some of the reasons we offer pain treatment is a sense of moral concern at seeing people in distress. As a society we’ve cast pain as a “thing” that needs to be fixed, a wrong that must be righted. We have cast ill health and disease as something that should not exist, and we use words like “war” or “battle” when we discuss treatments.  The Hippocratic Oath makes it clear that physicians “must not play at God” yet defining the limits of treatment is a challenge our society has yet to fully resolve.

At the same time as we view pain as an ill that must be removed, underneath the moral argument are a few other reasons – we think it’s wrong to allow someone to suffer. We think it’s wrong that people might not be able to do as they wish. We respect individual agency, the freedom to engage in life activities, to express the self, to participate in life fully and completely. And we think it’s important that, when disease or illness strikes, we offer something to reduce the restrictions imposed on individuals.

What’s wrong with these reasons for offering treatment?

Well, superficially and in the main, nothing. As humans we do have a sense of compassion, the desire to altruistically help others. Whether this is because, as a species, we hope someone will help us if we’re in the same situation, or whether we do it because of some other less selfish reason, I’m not sure. But there are problems with this way of viewing pain as an inevitably negative harmful experience. And I think it has to do with conflating (fusing together) the concepts of pain and suffering.

We offer people some treatments create suffering: I’ve just quickly skimmed a recent paper on using long-acting opioids for chronic noncancer pain where it was found that “prescription of long-acting opioids for chronic noncancer pain, compared with anticonvulsants or cyclic antidepressants, was associated with a significantly increased risk of all-cause mortality, including deaths from causes other than overdose, with a modest absolute risk difference” (Ray, Chung, Murray, Hall & Stein, 2016).

Given the poor response to pharmacological approaches experienced by so many people living with chronic pain (see Turk, Wilson & Cahana, 2011), not to mention “failed” surgery – the rates of persistent postsurgical chronic pain range from 12% (inguinal hernia) to 52% for thoracotomy (Reddi & Curran, 2014) – it surprises me that we often don’t discuss what to do (and when) if our treatments produce pain, or make it worse.

Nonmedical treatments can also be lumped in with these medical approaches – how many years of back-cracking, pulling, pushing, prodding, needling and exercising do people living with pain go through before someone pulls the plug and says “how about learning to live with your pain?”

What’s my goal in pain management?

When I see someone who is experiencing pain, whether it’s persistent or acute, my goal is for them to be able to respond to the demands of their situation with flexibility, and to live a life in which their values can be expressed.

That means no recipe for treatment, because each person is likely to have a whole bunch of different demands, things they’re avoiding, things that limit what they’re OK with doing. Values also differ enormously between people – we might all choose to work, but the reasons for working (and the kind of work we do) is informed by what we think is important. I’m intrigued by new learning, new information, and complexity. Others might be focused on ensuring their family is secure. Others still might be working to have a great social network. All of these values are relevant and  important.

Many of our treatments actually limit how flexibly people can respond to their situation – think of “safe” lifting techniques! And sometimes even the time people take away from living their normal life means their values are not able to be expressed. The thoughts and beliefs instilled by us as treatment providers (and from within our discourse about pain treatment) may also limit flexibility – think about “pain education” where we’ve inadvertently led people to believe that their pain “should” reduce because “know they know about neuroscience”.

At some point in the trajectory of a chronic pain problem, the person experiencing pain might need to ask themselves “Is what I’m doing helping me get closer to what I value, or is it getting in the way of this?” As clinicians we might need to stop for a minute, think of this part of the Hippocratic Oath “I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person’s family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick”  and begin to talk about overall wellbeing rather than just treating “the problem”.

To alleviate suffering we may not need to eliminate pain – we may instead need to think about how we can help people move in the direction of their values

 

Reddi, D. and N. Curran, Chronic pain after surgery: pathophysiology, risk factors and prevention. Postgraduate Medical Journal, 2014. 90(1062): p. 222-7

Ray, W. A., Chung, C. P., Murray, K. T., Hall, K., & Stein, C. M. (2016). Prescription of long-acting opioids and mortality in patients with chronic noncancer pain. JAMA, 315(22), 2415-2423.

Turk, D. C., Wilson, H. D., & Cahana, A. (2011). Pain 2: Treatment of chronic non-cancer pain. The Lancet, 377(9784), 2226-2235. doi:10.111/j.1468-1331.2010.02999.x

The positive power of what we say during treatment

Expectations form one of the important predictors of response to treatment, especially in the case of treatments for pain. A person’s belief or expectation that a treatment will reduce their pain is thought to be part of the response to placebo – and indeed, part of the response to almost any treatment.  Much of the research into expectancies has been carried out in experimental models where healthy people are given a painful stimulus, then provided with some sort of treatment along with a verbal (or written) instruction that is thought to generate a positive belief in the effectiveness of that treatment. The people we see in a clinical setting, however, are in quite a different setting – they experience pain sufficiently disruptive to their sense of well-being that they’ve sought treatment, they may not know what the pain problem is, they may have other health conditions affecting their well-being, and for some, their pain may be chronic or persistent. Do expectations have a clinically-relevant effect on their pain?

Luckily for us, a recent meta-analysis published in Pain (Peerdeman, van Laarhoven, Keij, Vase, Rovers, Peters & Evers, 2016) means the hard work of crunching through the published research has been completed for us! And given 15 955 studies were retrieved in the initial pass through the databases, we can be very relieved indeed (although only 30 met the inclusion criteria…).

What are expectations?

Before I swing into the results, it’s important to take a look at what expectations are and how they might relate to outcomes. According to Kirsch (1995) response expectancies are expectancies of the occurrence of nonvolitional responses (ie responses we’re not aware we make) as a result of certain behaviours, or specific stimuli.  Kirsch points out that nonvolitional responses act as reinforcement for voluntary behaviour, so that by experiencing a nonvolitional response such as relief, joy, reduced anxiety and so on, people are likely to engage in  behaviours associated with that experience again. For example, if someone is feeling worried about their low back pain, just by having a treatment they expect will help and subsequently feeling relieved, they’re likely to return for that treatment again.

How are expectations created?

Some expectations are generated within a culture – we expect, for example, to see a health professional to relieve our ill health. In general, simply by seeing a health profession, in our developed culture, we expect to feel relieved – maybe that someone knows what is going on, can give a name to what we’re experiencing, can take control and give direction to whatever should happen next. This is one reason we might no longer feel that toothache as soon as we step into the Dentist’s waiting room!

Peerdeman and colleagues outline three main interventions known to enhance positive expectations for treatment: verbal suggestion “You’ll feel so much better after I do this…”; conditioning “If I give you this treatment and reduce the painful stimulation I’ve been giving you, when you next receive this treatment you’ll have learned to experience relief” (not that you’d actually SAY this to anyone!); and mental imagery “Imagine all the wonderful things you’ll be able to once this treatment is over”.

I think you’d agree that both verbal suggestion and mental imagery are processes commonly used in our clinics, and probably conditioning occurs without us even being aware that we’re doing this.

How well does it work for people with acute pain?

As I mentioned above, expectations are used in experimental designs where healthy people are poked and zapped to elicit pain, and hopefully our clinical population are not being deliberately poked and zapped! But in clinical samples, thanks to the review by Peerdeman and co, we can see that there are quite some impressive effect sizes from all three forms of expectancy induction – g =  0.67 (95% CI 0.49-0.86). That means a good deal  of support from the pooled results of 27 studies to suggest that intentionally creating the expectation that pain will reduce actually does reduce pain!

And now for chronic pain

Ahhh, well…. here the results are not so good, as we’d expect. Small effects were found on chronic pain, which is not really unexpected – chronic pain has been around longer than acute pain, so multiple reinforcement pathways have developed, along with pervasive and ongoing experiences of failed treatments where either neutral or negative effects have been experienced.

What does this mean for us as clinicians?

Probably it means that we can give people who are about to undergo a painful procedure (finger pricking for diabetes, dressing changes for ulcers, getting a flu jab) a positive expectation that they’ll feel better once it’s over because the strongest effect was obtained for people undergoing a painful procedure who received a positive verbal suggestion that the procedure would help.

Chronic pain? Not quite so wonderful – but from this study I think we should learn that expectations are a powerful force in our treatments, both individually with the person sitting in front of us, but also socioculturally – we have an expectation that treatments will help, and that’s not something to sniff at. Perhaps our next steps are to learn how to generate this without inducing reliance or dependence on US, and on helping the person recognise that they have generated this themselves. Now that’s power to the people!

 

Kirsch, I. (1985). Response expectancy as a determinant of experience and behavior. American Psychologist, 40(11), 1189.

Peerdeman, K. J., van Laarhoven, A. I. M., Keij, S. M., Vase, L., Rovers, M. M., Peters, M. L., & Evers, A. W. M. (2016). Relieving patients’ pain with expectation interventions: A meta-analysis. Pain, 157(6), 1179-1191.

How do help someone change their beliefs about pain?

This post is my little attempt to educate clinicians! Some of you will know I really don’t like the term “pain education” or “educating” people. The reason doesn’t go back as far as the original definition of “educate” which is, according to the Online Etymology Dictionary “educate (v.) mid-15c., “bring up (children), to train,” from Latin educatus, past participle of educare “bring up, rear, educate” (source also of Italian educare, Spanish educar, French éduquer), which is a frequentative of or otherwise related to educere “bring out, lead forth,” from ex- “out” (see ex-) + ducere “to lead” (see duke (n.)). Meaning “provide schooling” is first attested 1580s. Related: Educated; educating.”In other words, educate means to “bring out, lead forth”.

Pain education is a buzz word right now. It’s not a new concept, but it certainly has been hitting the consciousness of a whole bunch of people who previously would have thought of pain either in terms of “oh it’s something to do with the tissues” or “if I can’t find the cause, it must be something in the person’s head”.  Learning about pain and the neurobiology of pain is an excellent thing, a wonderful first step for clinicians who may have missed out on learning this stuff in undergraduate training, and I’m not disrespectful of the need to know more. What I’m a lot uneasy about is thinking of pain education as a primary means for pain reduction, particularly when it’s carried out as “pain ed” where information is dumped without finesse.

We know that simply giving people information in order to change behaviour does not work unless the person is at the “preparation” stage of making a change.  In fact, mass media campaigns about back pain education haven’t been altogether successful despite an early study in Australia showing some really positive gains (Buchbinder, Jolley & Wyatt, 2001; Gross, Deshapnde, Werner, Reneman, Miciak & Buchbinder, 2012). Despite this, there have been numerous studies showing that there are positive gains if people experiencing pain are given good information about pain neurobiology (Louw, Diener, Butler & Puentedura, 2011; Louw, Diener, Butler & Puentedura, 2013; Louw, Puentedura & Mintkin, 2012; Moseley, Nicholas & Hodges, 2004). So… why am I so antsy about pain “education”?

Well, mainly because I think we’re often not trained to do “education” very well. We’re clinicians, we’ve spent years learning about our profession, but on the whole we haven’t been taught to teach – or even, truth to tell, how to help other people change their minds! With the exception of my psychology colleagues, I think most of us learned about what to tell people, rather than how to lead or guide people. And none of us like to be told what to do!

So… how do I go about helping someone think differently about their pain?

The first thing is, I’m not “educating”. The end result of “education” can simply be “Oh goody now I can get on with the real work”, “Yay! I’ve told them what to think, and now if they don’t get it, it’s their problem.” I think if we can change our language we might begin to approach this part of our therapy a little differently. If we aim to help people understand, think differently, reconceptualise or make sense of their experience we can begin to use a whole range of approaches to get to that end result. If we “educate” we might only think about the process of giving information.

How else can we help people think differently about their pain? I think it’s a process of helping people discover for themselves because we know this is a more successful process for learning than if we just give the answers. Think about kids – if we tell a kid how to ride a bike, they probably won’t be very good at riding even though they might know all about centrifugal forces, and inertia, and coordination and how a bike is made.  The reason we want to give information is that it might help give a kid more knowledge about what to think about when they’re riding – but it won’t change that they  need to hop on the bike to learn to ride it. Similarly, in helping people who are experiencing pain, we want people to be able to do things again – and while knowing more about pain might help reduce the fear from not knowing, but in the end people have to DO something differently to truly enact change.

How do I help someone discover for themselves? I begin by asking what people understand about their pain. I ask them what goes through their mind when they experience pain, what they think is going on and how they feel. I draw a diagram like the one below, and begin to fill in the gaps.

I will ask then what they think is going on – their theory – and add that into the diagram. I might ask what do they think that means for them? What do they think they need to do now? What would it mean if that was true? What would it mean if it wasn’t true? What would it say about them if it wasn’t true? How would they know if it was true?

I might ask about other experiences in the body, other sensations, things the person might not notice – maybe by saying “what do you notice in your shoulders? your breathing? your hands?” and so on. And then what these things mean as well. I’m primarily seeking information on the presence of sympathetic arousal (“stress response”) because this often presents at the same time as people experience pain – pain can be anxiety-provoking, so it’s a common reaction but often not noticed.

I include external factors – like what other people might have said, their response to the person’s experience – like advice, warnings, or even behaviours. When I think of other people I often separate “healthcare professionals”, “family”, and “work”, and sometimes include recent media campaigns that may have influenced how the person interprets his or her pain.

The resultant diagram can look a lot like this – but with the person’s own comments and phrases contained within each circle:

The idea behind listening and completing a diagram like this is to help me as a clinician to really hear what the person has been experiencing. We know all these aspects affect the experience of pain, but so often we go in with our own ideas about the problem, and fail to put together this complex web of interactions that help us answer the two questions:

• Why is this person coming to see me in this way at this time?
• What can be done to reduce both distress and disability?

My intention at the time I work through this diagram isn’t to change anything. It’s simply to listen and reflect what I’ve heard and to assemble that information in a way that makes some sense. It’s only after I’ve done this that I feel OK to begin to consider intervention/treatment priorities. For some people there is no point in trying to change what they believe – anything I say is likely to be countered by all these other things the person is hearing from everyone else. So instead I might begin by exploring movements and how these might be influencing what the person is focusing on. Or I might think about the impact or effect of avoiding things and talk through “what if” pain was less of a problem.

Sometimes I will address the thoughts and beliefs, basing my suggestions on looking at either the evidence that the belief is true – or the effect of that belief on the person’s experience. We might work out some small behavioural tests to see what happens if the person tries something out – maybe trying a movement they’ve avoided, just to see if their memory of how it was is accurate, or as bad as they recall.

When, and only when, the person indicates they want to know more about their pain, or they’ve found that their assumptions about pain don’t work out (because we’ve established some discrepancies between what the person thinks they’ve been told and their own experiences), then I can begin to go down the pain neurobiology education route – but it’s embedded in two important things:

1. That they’ve indicated a need and readiness to know more, and
2. I’ve already listened and tried to understand where they’re coming from

To my mind, doing anything before these two conditions are met is bound to be met with resistance, and risks being either ignored or rejected.

 

To summarise: giving information alone is not enough (usually) to help someone change their understanding of their own pain.

Some people don’t need to be given the whole pain education thing – what they want is to be heard and understood.

People learn more by doing, and if we want to help people do more (ie be less disabled and distressed by their pain) then we not only need them to know more, we need to help them DO more.

That means a lot less talking and a lot more doing.

Telling is less helpful than exploring together.

 

Buchbinder, R., Jolley, D., & Wyatt, M. (2001). 2001 volvo award winner in clinical studies: Effects of a media campaign on back pain beliefs and its potential influence on management of low back pain in general practice. Spine, 26(23), 2535-2542. doi:dx.doi.org/10.1097/00007632-200112010-00005

Gross, D. P., Deshpande, S., Werner, E. L., Reneman, M. F., Miciak, M. A., & Buchbinder, R. (2012). Fostering change in back pain beliefs and behaviors: When public education is not enough. Spine Journal: Official Journal of the North American Spine Society, 12(11), 979-988.

Louw, A., Diener, I., Butler, D. S., & Puentedura, E. J. (2011). The effect of neuroscience education on pain, disability, anxiety, and stress in chronic musculoskeletal pain. Archives of Physical Medicine and Rehabilitation, 92(12), 2041-2056. doi:http://dx.doi.org/10.1016/j.apmr.2011.07.198

Louw, A., Diener, I., Butler, D. S., & Puentedura, E. J. (2013). Preoperative education addressing postoperative pain in total joint arthroplasty: Review of content and educational delivery methods. Physiotherapy Theory and Practice, 29(3), 175-194.

Louw, A., Puentedura, E. L., & Mintken, P. (2012). Use of an abbreviated neuroscience education approach in the treatment of chronic low back pain: A case report. Physiotherapy Theory and Practice, 28(1), 50-62.

Moseley, G., Nicholas, M. K., & Hodges, P. W. (2004). A randomized controlled trial of intensive neurophysiology education in chronic low back pain. The Clinical Journal of Pain, 20(5), 324-330. doi:http://dx.doi.org/10.1097/00002508-200409000-00007

Why does “doing exercise” work?

Bless all the physiotherapists in the world, they keep us doing exercises. And exercises are good because they get us doing the things we want to do in our daily lives. But how does it work?  This is not an exposition on exercise physiology – I’m not au fait enough with physiology to do that and there are many other people out there with vast amounts of knowledge giving us the benefit of their wisdom who have written at length about exercise and why it’s important. Instead I want to talk about some observations – and maybe pose some critical questions too.

For many years I’ve worked in a chronic pain management centre where people with chronic pain attend a three week intensive pain management programme. Staff members from outside the Pain Management Centre (we were located as an outpatient facility on the grounds of a rehabilitation hospital) always told us they could spot a person with pain the moment they saw them wandering from our building to the main cafeteria: people walking slowly, sometimes limping, but often just walking very slowly towards the cafe.

Over the course of the three weeks, this group of people would go from this slow amble to walking briskly and attending the hydrotherapy sessions, doing a daily exercise session (circuit-style); and in the final week of the programme, catching a bus to the shopping centre, purchasing food, coming back and preparing a shared barbecue for friends and family. What a turn-around!

Now, I said I wasn’t going to talk about physiology and I won’t, but I WILL point out that three weeks is not a long time. It’s so little time that it’s impossible for muscle length and strength to change significantly. And yet movements (measured using the six minute walking test and timed up and go) were quicker. Postures changed. People looked more alert and took more notice of the world around them. The question of how it is that this group of people could go from being recognisably “pain patients” to people who could do everyday activities has to be asked.

There are a couple of points to make before I do my thing. Firstly, while the people attending the programme were undeniably uncomfortable, clearly slow in their movements, and most definitely disabled, they weren’t, by usual measures “deconditioned”. In other words, they were of pretty average fitness – and indeed, many had been attending daily gym sessions at the behest of a case manager and under the supervision of a physiotherapist for months! At the same time they were not DOING much and felt extremely limited in their capabilities.

The second point is that although the programme had two “exercise” sessions each day, these were not high intensity sessions! The aim in most cases was to help people establish a baseline – or a reliable, consistent quota of exercise that they could do irrespective of their pain intensity. Most of the work within the exercise sessions was to help people become aware of their approach to activity, to modify this approach, and to then maintain it. Movement quality rather than quantity was the aim.

Here’s where I want to propose some of the mechanisms that might be involved.

1. Humans like to, and almost need to, compare their performance with other people. It’s not something we choose to do, it’s an innate social bonding mechanism and whether we then modify what we do to match others – or deliberately try to do the opposite to mark out our own stance – we’ve based our behaviour on having observed what’s “normal” around us. And this applies even when people develop disability (Dunn, 2010), but perhaps more importantly, may well be fundamental to how we experience our world – and ourselves (Santiago Delefosse, 2011). When a group of people meet, their behaviour rapidly becomes more similar – similar gestures, similar body positions, and similar facial expressions. I wonder if one of the mechanisms involved in change within a group of people who live with chronic pain is this tendency to mirror one another’s behaviour.
2. Having proposed that mirroring is one mechanism of change, why don’t groups of people with chronic pain ALL remain slowed and showing pain behaviour? Well, another mechanism involved in behaviour change is operant conditioning. When a group is performing exercise under the supervision of a “wise and caring authority” (ie a physiotherapist), many reinforcements are present. There’s the “no, that’s not quite the right movement” response, and the “oh you did it!” response. The “you can do it, just push a bit more” response, and the “if you can do that, how about another?” At the same time people are set quota or “the number of repetitions” to complete within a timeframe. Simply recording what is happening is sufficient to change behaviour – just ask someone who is on a diet to record their food intake for a week and you’ll likely see some changes! But add to this a very potent response from the wise and caring physiotherapist, and you’ll get warm fuzzies for doing more, and possibly cold pricklies if you don’t try.
3. And finally, and possibly the most powerful of all, is the process of confronting feared movements – and doing them. Doing them without “safety behaviour” and doing them to specifically confront the thing that makes them scary. And doing them in many, many different settings, so as to alter the tendency to avoid them because they’re scary. A recently published systematic review and meta-analysis of graded activity (usually based on operant conditioning principles, and perhaps on cardiovascular fitness training principles) compared with graded exposure (deliberately confronting feared and avoided movements in a whole range of different contexts) found that graded exposure more effectively reduces catastrophising than just doing graded activation. This shouldn’t surprise us – one of the mechanisms involved in disability associated with nonspecific low back pain is avoiding doing things because people are fearful either of further injury, or of being unable to handle the effects of pain.

Where am I going with this post? Well, despite the face validity of exercise for reducing pain and disability, it’s not the physiological effects that first produce results. It can’t be because tissues do not adapt that quickly. What does appear to happen are a range of social-psychological processes that influence whether a person will (or won’t) do something. What this means is two things:

• Physiotherapists, and indeed anyone who helps people do movements to reduce disability, really need to know their psychological processes because they’re inherent in the work done.
• Becoming expert at analysing what a person wants and needs to do, and in being able to analyse then carefully titrate exposure to the contexts in which things need to be done is vital. That’s fundamental to occupational therapy theory, training and expertise.

 

 

Dunn, D. S. (2010). The social psychology of disability. In R. G. Frank, M. Rosenthal, & B. Caplan (Eds.), Handbook of rehabilitation psychology, (2 ed., pp. 379-390). Washington , DC: American Psychological Association

Lopez-de-Uralde-Villanueva, I., Munoz-Garcia, D., Gil-Martinez, A., Pardo-Montero, J., Munoz-Plata, R., Angulo-Diaz-Parreno, S., . . . La Touche, R. (2015). A systematic review and meta-analysis on the effectiveness of graded activity and graded exposure for chronic nonspecific low back pain. Pain Med. doi:10.1111/pme.12882

Santiago Delefosse, M. (2011). An embodied-socio-psychological perspective in health psychology? Social and Personality Psychology Compass, 5(5), 220-230.

Self-managing chronic pain

I have long been a proponent of helping people who live with pain to take control of their situation and actively self-manage as much as possible. My rationale has been that people who feel they are in control of some parts of their life are more likely to feel confident when their pain flares up, or when they have a life set-back. Today I took a second look at some of the papers on self-management published over the past few years, and I think it’s time to be a little critical.

The first issue to deal with is defining self-management. To me, self-management means knowing as much as possible about the health condition (whatever it is), knowing as much as possible about various treatments, working hard to learn and integrate ways of coping so that I (because yes, self-management is something I use for my fibromyalgia) can do the things I most value. By doing this, I can be more like who I want to be, rather than being defined by my pain, or what other people expect from me. But, self-management isn’t nearly as clearly defined as this in many people’s minds.

Here’s one definition “We defined self-management as the strategies individuals undertake to promote health (e.g., healthy living, exercising), manage an illness (e.g., manage symptoms, medication, and lifestyle changes), and manage life with an illness (e.g., adapt leisure activities or deal with losses caused by illness)” (Audulv, Asplund & Norbergh, 2012). Morden, Jinks and Ong (2011) found from a study of individual’s perceptions that managing chronic conditions is not solely related to medical recommendations and that self-management is central to maintaining a sense of ‘normality’ in everyday life or to reasserting one’s position in the social world when living with a chronic illness and demonstrating competency from a moral perspective.

Interestingly, a definition from COPD management describes self -management as “… programmes that aim to teach the skills needed to carry out medical regimens specific to a long-term disease and to guide behaviour change to help patients control their own condition and improve their well-being”(Effing,  Bourbeau, Vercoulen, Apter, Coultas, Meek, et al.2012). The distinction between chronic pain self-management and other chronic illness self-management lies in the need to address broader “living” issues rather than just learning to “carry out medical regimens”. And that is both the problem and the distinction between chronic pain self-management and other chronic disease self-management approaches.

Let me unpack this: For people living with COPD, or diabetes, there are critical medical management practices that need to be learned and integrated into daily life so that the underlying medical condition doesn’t get worse and lead either to complications, or even early death. The focus on self-management in these situations seems to be on the medical tasks that must be undertaken. The end results are often measured in terms of reducing the number of extreme events – like having hyperglycaemia, or being admitted with a chest infection and needing oxygen.

Now if I turn to the qualitative literature on self-management in chronic pain, what is very obvious is that self-management isn’t about the medical procedures that must be followed. It’s far more about living life – and integrating ways of getting to do what’s important without too many flare-ups that get in the way of doing these things. In fact, Morden, Jinks & Ong (2011) found that in people living with knee osteoarthritis, self-management wasn’t something people identified with – what might have been classified by clinical people as “exercise” or losing weight or keeping active weren’t thought of as “self-management” by people living with knee OA. They thought this was “just getting on with it”. I particularly liked one comment : “because people perceived their activities to be an integral part of their daily routine they were not surfaced as deliberate action.” In other words, when people focus on living life, coping strategies become habits and routines that are secondary to the doing of life.

Mike Nicholas and colleagues have looked into coping and self-management extensively as part of ongoing research associated with the Royal North Shore Pain Management Programme. they were interested in whether it’s possible to find out if adhering to strategies introduced within a programme was predictive of outcome: in other words, did people who strongly adhered to what they learned during a programme ultimately gain better quality of life, lower pain, less disability and feel better? Surprisingly, they did – I say surprisingly because in a couple of meta-analyses (for example Kroon, an der Burg, Buchbinder, Osborne, Johnston & Pitt, 2014; Oliveira, Ferreira, Maher, Pinto et al, 2012) self-management approaches made very little, if any, difference to pain and disability both over the short and long-term.

What does this mean? Well, quite apart from the blurry definitions of self-management, and the lack of standardisation inside self-management programmes, I think we need to ponder on just what we’re asking people to do – and how they (we) regard the strategies we hope people will develop. Cutting to the chase, in chronic pain management we risk people knowing “about” strategies, but failing to adopt them in daily life because we haven’t really thought about daily life and what this is to each individual. When I think about the vast number of changes to self-concept that chronic pain wreaks on people, I think it’s hard to be ready to adopt these new techniques until “who I am” is included in the mix. Maybe one reason for the modest improvements after self-management is that we’re not thinking about self-identity and values and that these need attending to so that using coping strategies is worthwhile. It’s yet another reason I think occupational therapists offer a great deal in chronic pain self-management – who are you? what do you want your life to stand for? what things do you do (or want to do) that makes your life yours? Finally, to paraphrase as my colleague Ben Darlow, living with low back pain (read: any chronic pain) means balancing the need to minimise pain fluctuations with the things that make life worth living. That’s what I call “flexibly persisting”.

Audulv, A., Asplund, K., & Norbergh, K.-G. (2012). The integration of chronic illness self-management. Qualitative Health Research, 22(3), 332-345. doi:http://dx.doi.org/10.1177/1049732311430497

Effing, T. W., Bourbeau, J., Vercoulen, J., Apter, A. J., Coultas, D., Meek, P., . . . van der Palen, J. (2012). Self-management programmes for copd moving forward. Chronic respiratory disease, 9(1), 27-35.

Morden, A., Jinks, C., & Bie Nio, O. (2011). Lay models of self-management: How do people manage knee osteoarthritis in context? Chronic Illness, 7(3), 185-200.

Nicholas, M., Asghari, A., Corbett, M., Smeets, R., Wood, B., Overton, S., . . . Beeston, L. (2012). Is adherence to pain self-management strategies associated with improved pain, depression and disability in those with disabling chronic pain? European Journal of Pain, 16(1), 93-104. doi:10.1016/j.ejpain.2011.06.005

Oliveira, V. C., Ferreira, P. H., Maher, C. G., Pinto, R. Z., Refshauge, K. M., & Ferreira, M. L. (2012). Effectiveness of self-management of low back pain: Systematic review with meta-analysis. Arthritis care & research, 64(11), 1739-1748.

Pain measurement: Measuring an experience is like holding water

Measurement in pain is complicated. Firstly it’s an experience, so inherently subjective – how do we measure “taste”, for example? Or “joy”? Secondly, there’s so much riding on its measurement: how much pain relief a person gets, whether a treatment has been successful, whether a person is thought sick enough to be excused from working, whether a person even gets treatment at all…

And even more than these, given it’s so important and we have to use surrogate ways to measure the unmeasurable, we have the language of assessment. In physiotherapy practice, what the person says is called “subjective” while the measurements the clinician takes are called “objective” – as if, by them being conducted by a clinician and by using instruments, they’re not biased or “not influenced by personal feelings or opinions in considering and representing facts”. Subjective, in this instance, is defined by Merriam Webster as “ relating to the way a person experiences things in his or her own mind. : based on feelings or opinions rather than facts.”  Of course, we know that variability exists between clinicians even when carrying out seemingly “objective” tests of, for example, range of movement, muscle strength, or interpreting radiological images or even conducting a Timed Up and Go test (take a look here at a very good review of this common functional test – click)

In the latest issue of Pain, Professor Stephen Morley reflects on bias and reliability in pain ratings, reminding us that “measurement of psychological variables is an interaction between the individual, the test material, and the context in which the measure is taken” (Morley, 2016). While there are many ways formal testing can be standardised to reduce the amount of bias, it doesn’t completely remove the variability inherent in a measurement situation.

Morley was providing commentary on a study published in the same journal, a study in which participants were given training and prompts each day when they were asked to rate their pain. Actually, three groups were compared: a group without training, a group with training but no prompts, and a group with training and daily prompts (Smith, Amtmann, Askew, Gewandter et al, 2016). The hypothesis was that people given training would provide more consistent pain ratings than those who weren’t. But no, in another twist to the pain story, the results showed that during the first post-training week, participants with training were less reliable than those who simply gave a rating as usual.

Morley considers two possible explanations for this – the first relates to the whole notion of reliability. Reliability is about identifying how much of the variability is due to the test being a bit inaccurate, vs how much variability is due to the variability of the actual thing being measured, assuming that errors or variability are only random. So perhaps one problem is that pain intensity does vary a great deal from day-to-day.  The second reason is related to the way people make judgements about their own pain intensity. Smith and colleagues identify two main biases (bias = systematic errors) – scale anchoring effects (that by giving people a set word or concept to “anchor” their ratings, the tendency to wander off and report pain based only on emotion or setting or memory might be reduced), and that daily variations in context might also influence pain. Smith and colleagues believed that by providing anchors between least and “worst imaginable pain”, they’d be able to guide people to reflect on these same imagined experiences each day, that these imagined experiences would be pretty stable, and that people could compare what they were actually experiencing at the time with these imagined pain intensities.

But, and it’s a big but, how do people scale and remember pain? And as Morley asks, “What aspect of the imagined pain is reimagined and used as an anchor at the point of rating?” He points out that re-experiencing the somatosensory-intensity aspect of pain is rare (though people can remember the context in which they experienced that pain, and they can give a summative evaluative assessment such as “oh it was horrible”). Smith and colleagues’ study attempted to control for contextual effects by asking people to reflect only on intensity and duration, and only on pain intensity rather than other associated experiences such as fatigue or stress. This, it must be said, is pretty darned impossible, and Morley again points out that “peak-end” phenomenon (which means that our estimate of pain intensity depends a great deal on how long we think an experience might go on, disparities between what we expect and what we actually feel, and differences between each of us) will bias self-report.

Smith et al (2016) carefully review and discuss their findings, and I strongly encourage readers to read the entire paper themselves. This is important stuff – even though this was an approach designed to help improve pain intensity measurement within treatment trials, what it tells us is that our understanding of pain intensity measurement needs more work, and that some of our assumptions about measuring our pain experience using a simple numeric rating scale might be challenged. The study used people living with chronic pain, and their experiences may be different from those with acute pain (eg post-surgical pain). The training did appear to help people correctly rank their pain in terms of least pain, average pain, and worst pain daily ratings.

What can we learn from this study? I think it’s a good reminder to us to think about our assumptions about ANY kind of measurement in pain. Including what we observe, what we do when carrying out pain assessments, and the influences we don’t yet know about on pain intensity ratings.

Morley, S. (2016). Bias and reliability in pain ratings. Pain, 157(5), 993-994.

Smith, S. M., Amtmann, D., Askew, R. L., Gewandter, J. S., Hunsinger, M., Jensen, M. P., . . . Dworkin, R. H. (2016). Pain intensity rating training: Results from an exploratory study of the acttion protecct system. Pain, 157(5), 1056-1064.

Live Plan Be

There are times in my work when I feel like I’m banging my head against a brick wall. Even though I’ve been saying most of what I write about on here since forever, it seems to take SUCH a long time for anything much to change! BUT then along comes something totally cool to brush my frustration away, and today I want to talk about Live Plan Be developed by Pain BC in Vancouver, Canada.

A couple of years ago I was given the privilege of being asked to prepare a document analysing the content and approach of self management programmes. I reviewed the Cochrane systematic reviews which all supported a multidisciplinary self management approach as the foundation for chronic pain management. I then turned to the qualitative research to investigate what it’s like to be part of a programme from the participant’s perspective. I found that people attending these programmes enter a journey of self-discovery, that some of the skills don’t seem to make sense at first – but do when the person returns to their own setting. I also found that people living with chronic pain relish the opportunity to feel that their pain is acknowledged, that others on the programmes know what it’s like to live with chronic pain so they don’t have to spend ages trying to explain themselves, and to have the chance to be with others who ‘get it’ means breaking out of the isolation that chronic pain can bring.

I also took a look at the ways these programmes can be delivered. While many programmes are face-to-face, with technology making online programmes increasingly more responsive and flexible, I wanted to see whether there were major differences in the outcomes of each programme. Although it’s difficult to tell because the populations using both approaches are not exactly the same, from what I could find, the outcomes were comparable. This is really exciting because it means more people can get access to approaches that have solid research underpinning them without having to travel to and from, and without the staffing needed for face-to-face programmes.

As a result of my report, I suggested that Pain BC might like to investigate developing a whole new programme for helping people live well with chronic pain, and to make this an online programme with some of the features that the research into online behaviour change programmes has identified as useful. Things like having a discussion forum so participants can connect and share their experiences of the reality of living with chronic pain. Having action prompts so that people don’t just read something – but also get prompted to DO something with that information – and most importantly, have this tied to where the person is currently at in their journey towards making changes to live with their pain. I recommended having some self-assessments so people can track their progress, and a place where they could record the things that worked, and those that didn’t work, so it’s easy to share with other people including health professionals.

I’m SO excited to see how Live Plan Be has come together – and it’s now LIVE!

The team that has put this together has done an amazing job, exceeding my wildest dreams of what the programme might look like. It’s sophisticated, easy to use, has lovely graphics and video recordings of real people doing real things, has SO MUCH information on it – and it’s free! If you have chronic pain, or you work with people living with chronic pain, I would love you to take a look at it, and try it out. Then let me know what you think. Whatever feedback you give, you’ll know that the team will work hard to keep on making it better and more useful, so please let them know.

Meantime, I’m hoping that this will bring some hope to people who have struggled with chronic pain, and would like to learn to live well.