Research

On values, culture and health


This week is Te Wiki o te Maori – and the theme is Kia Kaha te Reo Maori. For those readers not familiar with te reo, kia kaha translates to “be strong.” It’s a word people from Otautahi (Christchurch) have used a lot since 2010 and the first of the many events that have shaken (literally) our world since then. Te Wiki o te Maori is a week dedicated to celebrating and strengthening the use of Maori language in New Zealand.

While the week celebrates the language of Aotearoa, it also helps us tangata tiriti, or people of the Treaty of Waitangi, remember that we have a place in this whenua (land). It helps me remember the values that those of us living in Aotearoa hold dear.

The thing about culture is that many of us don’t even recognise that we have a culture. Cultures are the assumptions, practices, values, beliefs, habits, ways of being that we have absorbed without knowing we have (see here for a nice description of culture). We all live within more than one culture, irrespective of the colour of our skin – culture is not synonymous with ethnicity or “race.”

This year “Black lives matter” has erupted onto the consciousness of thousands of people around the world. It’s as if, for many people, the whole notion of equality vs equity has never before been a thing. And it’s this blindness to social differences that I want to discuss today.

Recently I’ve been talking about the way exercise is discussed amongst health professionals. I pointed out that not everyone enjoys the gym, and that 3 x 10 sets of exercises is possibly the best way to kill anyone’s enthusiasm for movement. I also argued the aim of rehabilitation is to give the person their own life back – not some “living by numbers” recipe made up of lists, targets and goals.

Both those posts met with a certain amount of enthusiasm, and an equal degree of push-back. Push-back comes from a sense of certainty that of course exercise is a thing we all should do for our health. Because, of course, our health is the thing we should most value.

Or is it? Health professionals enter their professions for many reasons, but one often unacknowledged one is that we value health. We might not state it in those words, we might couch it in terms of “I want to help people”, “I like to give to my community” or even “I have a calling” (Witter, Wurie, Namakula, Mashange, Chirwa & Alonso-Garbayo, 2018), but during our training, we are encultured into valuing health more highly than, perhaps, we would have.

We are also privileged as health professionals. Witter and colleagues also point out that people become health professionals for financial reasons – job stability, respect, status in a family or community. Some health professionals can train for free, while most will recoup the cost of education during their working life. We are privileged because we have education. We have work. We have respect, mana, so what we say carries weight.

When I consider this construct we call health, I bring to mind the WHO definition which is “Health is a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity.” (Preamble to the Constitution of WHO as adopted by the International Health Conference, New York, 19 June – 22 July 1946; signed on 22 July 1946 by the representatives of 61 States (Official Records of WHO, no. 2, p. 100) and entered into force on 7 April 1948. The definition has not been amended since 1948). Health is more than the absence of disease or infirmity. That bears repeating. Health, in tangata whenua terms, is viewed as wellbeing in four areas: taha tinana (physical wellbeing), taha hinengaro (mental wellbeing), taha wairua (spiritual wellbeing) and taha whanau (family wellbeing).

I bring to mind a person I know. Let’s call her Allie. She is five years older than me. She is overweight, smokes tobacco and has COPD. She left school at 14 years old, and has worked in minimum wage jobs her whole working life. She became pregnant at 16 years old, and raised her only child as a single parent. He has had a mixed and disrupted life, spending many years in prison with a methamphetamine addiction and multiple convictions for burglary. He has a 14 year old daughter who now lives with her grandmother, Allie.

Now Allie has seen a lot of health professionals. Almost all of them have talked to her about her smoking. They’ve also talked to her about diet and exercise. None of this talk has helped her kick the smoking habit, and exercise? What of it? As she said to me once, “tell me when I can go exercise after I leave home at 6.00am, go to one job, then get back from the second job at 7.30pm?”

What matters to Allie? He tangata, he tangata, he tangata. The most important thing in the world to her is keeping her grand-daughter safe. Allie has spent countless hours trying to give her grand-daughter the security of a settled home, a place where there are rules and boundaries, and a place where there is warmth, food, a bed to sleep in, and people who care. And she’s done this with minimal support from her son, her grand-daughter’s mother, and the NZ social welfare system.

So as health professionals, when we begin to judge or critique people for not being “compliant”, for not being “motivated”, for failing to go to the gym, for not stopping smoking – we need to stop for a minute. Allie has tried countless times, believe me – but has anyone asked her what she gains from smoking? It’s her stress relief. In the absence of alternatives, it’s her reliable stand-by. The only way we’re likely to influence Allie is if we view her life through her eyes, and work with what she values.

And when we prescribe what we think is Most Important because we think the person in front of us values what we value – we’re speaking from a place of privilege, and through a lens that reflects our own priorities. And we could be completely oblivious to this. Such is the nature of privilege. Let’s take a moment to appreciate that the people we serve want to return to their own lives, valuing what they value, with their own priorities, and their own perspectives. Kia kaha, arohanui.

Witter, S., Wurie, H., Namakula, J., Mashange, W., Chirwa, Y., & Alonso‐Garbayo, A. (2018). Why do people become health workers? A nalysis from life histories in 4 post‐conflict and post‐crisis countries. The International journal of health planning and management, 33(2), 449-459.

What to do when one size does not fit all


Alert: rant ahead.

Early in my career working in persistent pain management, it was thought that “chronic pain is chronic pain is chronic pain” and pretty much anything that helped one person would help the next. Over time we’ve learned a lot more about persistent pain: the mechanisms differ a lot between neuropathic mechanisms and nociplastic mechanisms. Even within these groups, the mechanisms are very different. We’ve also learned a lot more about the psychosocial variables that are associated with prolonged disability and distress when pain persists. Some of the earliest work by Turk and colleagues found that by using the Westhaven-Yale Multidimensional Pain Inventory, people could be classified into four subgroups (Kerns, Turk & Rudy, 1985). While the names of these subgroups could do with some updating (to avoid negative labelling), there’s a large body of research supporting the four groups they found.

When I first worked at Burwood Pain Management Centre, the WHYMPI was the workhorse pre-assessment questionnaire used to help clinicians understand more about the person they were seeing. Interestingly, at the time there were two group programmes on offer: one was the three week full time residential pain management programme, and people who were admitted to this programme were those with high levels of distress and disability, often with very unhelpful beliefs about their pain, and needing the intensity of the full-time programming to help them make changes that would be sustained when they went home. The other was an outpatient programme, two sessions a week for six weeks, and this was intended for people who had more disturbance in their relationships with others, who felt unsupported and as a result were distressed. Also in this group were people who were generally managing well but needed to learn some new skills so they could get on with their lives.

Times change. Neither of those programmes are running in the same way as they were and there’s been an increase in individual sessions with single discipline input right around the world. Some commentators point out that changing funding models has led to the rise of single discipline intervention (Loeser, 2006), others discuss the ethical dilemmas raised by funding that is allocated on outputs (numbers of people seen) rather than outcomes (how well those people who have been seen are doing, and especially how well they do over time) (Loeser & Cahanda, 2013). This discourse has spilled over into how clinical guidelines have been developed (Chou, Atlas, Loeser, Rosenquist & Stanos, 2011), and this in turn has led to policy and funding decisions made at local level.

The rise of interventional pain treatment (Manchikanti, Pampati, Sigh & Falco, 2013) has been observed right around the world, including in New Zealand. Interventional pain treatments aim to reduce pain intensity via non-surgical means, often through anaesthetic injections (blocks), and in some cases by localising the supposed source of nociception through diagnostic blocks, then ablating or coagulating the proteins around the nerve, to stop transmission (Cohen, Stojanovic, Crooks, Kim, Schmidt, Shields et al, 2008). These latter procedures apply to a very small proportion of people with back pain, nevertheless they are popular – albeit not always applied to the cohort of people originally intended (Bogduk & McGuirk, 2002).

Alongside the rise of interventional procedures, in New Zealand there has been a shift from passive physiotherapy modalities (acupuncture, heat packs, interferential, ultrasound) to active management – which pretty much looks like exercise in New Zealand. New Zealand’s ACC funds community-based pain management programmes that are intended to be tailored to the person’s needs, have a multidisciplinary team approach, and use a multifactorial model of pain. While these programmes superficially look progressive and innovative, results from a recent study colleagues and I have carried out, sadly it looks much like exercise plus psychology, and the teamwork aspect is minimal. More concerning is the rise of “cookie cutter” programmes, limited understanding and use of the carefully collected psychometric information completed by patients, and inappropriate referrals to the services.

The landscape of publicly funded pain management in New Zealand is fraught with problems. Each district has a health board consisting of elected plus appointed members. District health boards have the task of allocating the money central government gives them, according to the needs and wishes of the community. Note that in NZ, accident-related rehabilitation is funded by our national accident insurer (we only have one, it’s no-fault and 24/7). Given we have patchy community service provision for people with pain following accidental injury, you’d think our district health boards would have some consistent approach to helping the one in five Kiwi’s living with pain lasting more than three months. Now while not everyone who has persistent pain will need help to manage it (think of those with osteoarthritic knees and hips who are not quite ready to head to surgery), amongst those who have the most trouble with pain are also those with a history of trauma. Christchurch and the Canterbury area have had, over the past 10 years, over 10,000 earthquakes (the last noticeable one was only last week – take a look at geonet), the Kaikoura earthquakes, and the mosque shooting. During the five or so years after the earthquakes, the city’s children were disrupted by changes to schools (thanks, Hekia Parata and the National Party – you are not forgiven). What all these events have in common is the impact on people with pain. And you guessed it, there is no coherent national approach to pain management, no pain plan or policy.

We know there is a relationship between traumatic events, particularly those in early childhood, and persistent pain (eg Ne4lson, Simons & Logan, 2018). We also know that victims of crush injuries, traumatic amputations, and bullet wounds are likely to experience greater neuropathic pain which is particularly hard to treat. People with persistent pain, especially when it’s been around for some years, are also likely to have poor sleep, mood problems, anxiety problems, and in many cases, will have had repeated surgeries and be given a multitude of pharmaceuticals to help reduce pain and distress.

The problem is that when these are applied without the support of a team, they may well be applied without finesse. They may reduce pain, a little (though this is arguable given how poorly analgesics perform – and the misapplication of the WHO analgesic ladder, Ballantyne, Kalso & Stannard, 2016). But we know that pain intensity and disability are not well-correlated. So while the focus on reducing pain via injections, ablations, surgery, pharmaceuticals and so on is helpful on it’s own it doesn’t necessarily change a person’s sleep pattern, their low mood, their lost job, their fear of moving, the relationship that’s fallen apart, the loss of sense of self…

Worse: when pain management is poorly coordinated and doesn’t target the real needs of people who live with pain and who don’t respond to these efforts (the majority of people with neuropathic pain, for example), people don’t stop seeking help. They pop up in all sorts of places: primary care practices (to the GP who is over-worked, poorly supported and often poorly educated about pain); via Emergency Department (where, although the pain may have been present for a long time, it must be treated as an acute pain problem because that’s what EDs do); admitted for investigations, to provide “respite” for family, to be reviewed yet again by a clinician who is not well-informed about pain because our training in pain is pretty poor (Shipton, Bate, Garrick, Steketee, Shipton and Visser, 2018). They are invisible to NZs health system because they’re not coded as having pain as their primary problem. And people with persistent pain don’t die, and the public’s attention (and media) is focused on deaths. Like the long-lasting Covid-19 patients who continue to have trouble from Covid-19 months after their initial infection, people with persistent pain just hang around. And medical-only approaches simply do not work to treat rehabilitation needs. Rehabilitation is where it’s at. But rehabilitation is no longer a focus of in-patient care in hospitals (neither should it be) – but there are few places outside of hospitals that are funded and staffed to help.

This lengthy post is written out of frustration because too often I’ve seen conversations about pain management saying “oh it doesn’t work” – true! Nothing works well. But most things work a bit. Our problem is twofold: we can’t predict who will and won’t respond very well (though the old WHYMPI and similar psychometric measures/profiles do offer some guidance); and we have little national cohesion around sharing resources. We need to better monitor the impact of our treatments so we can quickly add, or remove, treatments to target particular problems. And all of the providers must have skills for working with people who have persistent pain.

Let’s do better. Let’s clamour for more nationwide planning. Let’s raise the profile of the allied health workforce who do the majority of rehabilitation with people living with pain. Let’s make our teams TEAMS not sets of individuals working in parallels. Let’s have some leadership around the value of pain management, and why it’s important. Let’s bring this whole issue to light. Let’s do it.

Ballantyne, J. C., Kalso, E., & Stannard, C. (2016). WHO analgesic ladder: a good concept gone astray. BMJ, 352, i20. doi:10.1136/bmj.i20

Bogduk, N & McGuirk, B. (2002). Medical Management of Acute and Chro5nic Low Back Pain. An Evidence-based Approach. Pain Research and Clinical Management, Vol3. Elsevier.

Chou, R., Atlas, S. J., Loeser, J. D., Rosenquist, R. W., & Stanos, S. P. (2011). Guideline warfare over interventional therapies for low back pain: can we raise the level of discourse? J Pain, 12(8), 833-839. doi:10.1016/j.jpain.2011.04.012

Cohen, S. P., Stojanovic, M. P., Crooks, M., Kim, P., Schmidt, R. K., Shields, C. H., . . . Hurley, R. W. (2008). Lumbar zygapophysial (facet) joint radiofrequency denervation success as a function of pain relief during diagnostic medial branch blocks: a multicenter analysis. Spine Journal: Official Journal of the North American Spine Society, 8(3), 498-504.

Kerns, R. D., Turk, D. C., & Rudy, T. E. (1985). The west haven-yale multidimensional pain inventory (WHYMPI). Pain, 23(4), 345-356.

Loeser, J. D. (2006). Comprehensive Pain Programs Versus Other Treatments for Chronic Pain. The Journal of Pain 7(11), 800-801.

Loeser, J. D., & Cahana, A. (2013). Pain medicine versus pain management: ethical dilemmas created by contemporary medicine and business. Clin J Pain, 29(4), 311-316. doi:10.1097/AJP.0b013e3182516e64

Manchikanti, L., Pampati, V., Singh, V., & Falco, F. J. (2013). Assessment of the escalating growth of facet joint interventions in the medicare population in the United States from 2000 to 2011. Pain Physician, 16(4), E365-378.

Nelson, S., Simons, L. E., & Logan, D. (2018). The incidence of adverse childhood experiences (ACEs) and their association with pain-related and psychosocial impairment in youth with chronic pain. The Clinical Journal of Pain, 34(5), 402-408.

Shipton, E. E., Bate, F., Garrick, R., Steketee, C., Shipton, E. A., & Visser, E. J. (2018). Systematic review of pain medicine content, teaching, and assessment in medical school curricula internationally. Pain and therapy, 1-23.

The hardly hidden costs


Chronic/persistent pain management is not sexy. No-one gets a magic cure. Lives are not saved – at least not in a way that mortality statistics show. Chronic pain management is under-funded.

And now: buried in a list of other proposed service cuts in the local health board’s plan to save millions of dollars, is a proposal to “save” $650,000 from the pain clinic. You’ll note also reductions in community services, GP support for vulnerable, and healthy lifestyles programmes.

https://www.stuff.co.nz/national/health/122558278/hundreds-of-staff-nurses-and-services-may-be-axed-at-canterbury-dhb

I know that nursing staff, senior medical staff and 200 admin staff are also in the firing line. I also know that this health board has been side-swiped by earthquake earthquake re-building, the terror attacks with so many victims needing urgent and ongoing surgery and rehabilitation, along with the mental health impacts of all of these events and now Covid-19… Delays and poor workmanship on new buildings on the main hospital site have meant these new facilities are well over-budget, and two years late – and there is still no car-parking for patients and staff. Historic under-funding by past governments has meant Canterbury DHB has developed innovative and nimble responses to these challenges – and been lauded internationally for their work. I won’t say anything about the growth in middle management, suffice to say that where there was once one general manager at one site, and a direct report line from the clinical director of a service – now there are three or four layers of management…

Let me turn to why cutting expenditure on pain services is likely to cost rather than save.

In 1987 or so, a new pain management service was developed in Christchurch. One of the primary reasons for opening this centre was to address the burgeoning rise in numbers of people presenting for orthopaedic surgery but for whom surgery was not an option. Either because there was nothing to find on imaging – pain can’t be imaged, and surgeons can’t operate on a normal x-ray or MRI – or because the person’s problem would likely not respond to surgery.

As a result of the new pain management service, people who weren’t suitable for orthopaedic surgery were referred for multidisciplinary pain management: medical assessment, functional assessment, psychosocial assessment, and appropriate pain management from there. Fewer people with low back pain were being admitted to the orthopaedic wards as a result. Win!

It’s only possible in the first few years of a service to clearly demonstrate the impact of it on the rest of the health system. Why? Because it’s not possible to show what isn’t happening. Now that pain management services have been in place for many years, the effect of people attending these services rather than other parts of the healthcare system is invisible.

For example, people who attend pain management services don’t need as many ambulance trips, visits to the Emergency Department, admissions via Emergency to hospital wards. They don’t stay in hospital beds while they undergo investigations – all the while using bed space, “hotel services” (food, linen, soap, towels, hot water, cleaning services), along with the skilled healthcare staff – doctors, nurses, physiotherapists, occupational therapists, laboratory workers, phlebotomists, radiographers, pharmacists and on and on…

People who are served well through pain services don’t take up as much space in the rest of the system – and the very people who need pain services are the people who otherwise do end up in many places throughout the healthcare system (Blyth, March, Brnabic, Cousins, 2004; Duenas, Ojeda, Salazar, Mico & Failde, 2016). It’s evident from so many epidemiological studies that people with chronic pain will have an impact across “physical” health services, “mental” health services, primary care (General practice), secondary care and tertiary care. And an acute hospital setting is not the right place for people with chronic pain to be treated.

Until recently, though, admissions for chronic pain haven’t been counted as “chronic pain” because the coding used (ICD10) doesn’t have chronic pain as a stand-alone category. This means a person with chronic abdominal pain, for example, will have their condition listed within an acute pain admission category. Similarly with chronic non-cardiac chest pain – these admissions are coded as “cardiac”. The new ICD11 will help make these currently hidden admissions visible – but currently, it’s not possible to identify just how many people are being seen in these departments but who could be better managed in a persistent pain clinic.

Now I’m the first to admit that our treatments for chronic pain don’t show massive effects. Pain intensity, disability, distress all continue to have an impact on people even after attending a pain service. BUT that is the nature of a persistent pain problem – people don’t die from it, but like those with “long-Covid19”, they continue to need help. And yet, by comparison with the costs of not providing these services, pain clinics save a health system money – and this has been known since the 2000’s (Gatchel, McGeary, McGeary & Lippe, 2014; Loisel, Lemaire, Poitras, Durand, Champagne, Stock .et al, 2002).

The saddest thing about the proposal to cut funding is that by losing skilled and experienced – and passionate – clinicians, we all lose. Community pain services in New Zealand are largely staffed by clinicians who have little/no additional training in persistent pain. It’s well-documented that physiotherapists find it hard to identify and work with psychosocial factors – the main predictors for long-term distress and disability. Psychology programmes in New Zealand have little/no pain content. There are too few pain specialists. And most of the community pain services pay lip service to interprofessional teamwork because they’re not co-located, haven’t developed effective team structures because these are considered a “cost” to service delivery by private owners, and use contractors who are not paid to attend meetings.

New Zealand’s population is aging. Along with aging is an increase in painful conditions such as osteoarthritis and diabetic neuropathy (we have such high rates of diabetes). We have no national pain strategy. Our clinical workforce is under-skilled and many clinicians find pain management work is hard and demoralising. I can see why clinicians feel demoralised when what should be seen as essential services are in the sights of cost-cutting administrators.

Blyth, F. M., March, L. M., Brnabic, A. J., & Cousins, M. J. (2004). Chronic pain and frequent use of health care. Pain, 111(1-2), 51-58.

Dueñas, M., Ojeda, B., Salazar, A., Mico, J. A., & Failde, I. (2016). A review of chronic pain impact on patients, their social environment and the health care system. Journal of pain research, 9, 457.

Gatchel, R. J., McGeary, D. D., McGeary, C. A., & Lippe, B. (2014). Interdisciplinary chronic pain management: past, present, and future. American Psychologist, 69(2), 119.

Loisel, P., Lemaire, J., Poitras, S., Durand, M. J., Champagne, F., Stock, S., … & Tremblay, C. (2002). Cost-benefit and cost-effectiveness analysis of a disability prevention model for back pain management: a six year follow up study. Occupational and Environmental Medicine, 59(12), 807-815.

Whose life is it anyway?


A couple of weeks back I posted about my concerns that exercise is often over-hyped, has limited effects on pain and disability, and therefore people going through a rehabilitation programme will likely dump doing the exercises as soon as the programme ends. Well, that was an interesting conversation starter! TBH I expected the response. On the one hand we have avid strength and conditioning people (including a whole bunch of physiotherapists) saying it’s crucial to get strong and fit because it’s good for health and longevity, while on the other hand we have a large group of “others” who think life is too short to spend it in a claustrophobic gym, sweating and grunting and going red in the face. I may exaggerate a teeny tiny bit. Not about the sweating, grunting and going red though.

Part of my intention for that post was to stir the pot about the form of movement options being offered to people who live with pain. I’m not sure that message got across as strongly as I’d like – you see, I am not against getting fit, or improving strength and flexibility. I AM against cookie cutter approaches to rehabilitation where everyone gets the same thing irrespective of their personal values and interests – and competing demands on time.

So I thought I’d ask a bunch of people what they think a person’s life might look like 6 – 12 months after completing a rehabilitation programme. Fascinating. I won’t report the findings because this was an informal opinion survey, it’s in a private group, and people were not asked to give consent to the findings being reported.

What I will say is that opinions were diverse. Mostly people indicated that the person’s own life, goals, and preferences should be the determinants. Pain intensity wasn’t mentioned as often, and many responses showed that doing what matters to a person is key.

Well and good.

What’s my perspective? Having an injury or a problem that becomes persistent disrupts normal life. For many people this disruption is reasonably brief and life does “return to normal”. A hiccough on life’s journey. For others, it’s a complete change in life trajectory – long periods in limbo land while decisions are made on the person’s behalf, and not always with their cooperation (insurers, surgeons, rehabilitation professionals, I’m talking about you here) (Richardson, Ong & Sim, 2006). Life is never the same. And still others find it an opportunity to regroup, to review and perhaps to grow and flourish. Some commentators consider this latter group to have greater psychological resources than those who don’t (Wettstein, 2018).

We have paid a lot of attention to those who find it really difficult to integrate this persistent pain into a sense of self. There’s good reason to: people who find it hard to resume life with pain use more health resources, have poorer health more generally, and can be viewed very negatively by health professionals (Buchman, Ho & Illes, 2016; Mutubuki, et al, 2019).

We’ve paid less attention to those who flourish. To those who have found new meaning in life, new plans, a new sense of self. And I think part of this lies with our attention to “problems” rather than successes (because people who don’t seek healthcare are invisible to most of us, especially policy developers).

I was encouraged by some of the responses to my informal poll. Many clinicians talked about joy, meaning, values, curiosity, self-reliance, and being able to live despite pain’s presence. Several people with pain talked about the need to have a life, even if it meant pain increased (not all, but some). In other words – living! Not having a set of prescribed goals to tick off each day, although some of the activities that made up “life” were based on goal-derived activities drawn from their rehabilitation.

This is what I hope we will help people do: live a life that responds flexibly to what is thrown at us (Covid19, lockdown, age, accidents, disease processes, other people, life span events, earthquakes, climate change…), and that we move towards the things that matter to us. That our lives are imbued with the qualities we most value. That we feel connected, competent, to be able to feel deeply, for life to make sense, to know the directions we’re headed in, and to be able to make choices for ourselves (Thanks Steven Hayes! These are the basic yearnings from A Liberated Mind written by Dr Hayes and published this year).

Which leads me to goals and goal-setting. OMG we need to do some work, people. An auto-ethnography by Jenny Alexanders and Caroline Douglas points out that practices of clinician-centred goal-setting continue (Alexanders & Douglas, 2018), while a study by Gardner and colleagues (2018) found that while goal-setting was often collaborative, those therapists with a higher biomedical orientation in their treatment approach involved patients less. Levack, Weatherall, Hay-Smith, Dean, McPherson & Siegert (2016) found there is an increasing amount of research into goal-setting in rehabilitation, but that study design and heterogeneity of studies mean the quality of evidence for the effect sizes is pretty poor.

I take from this, that while clinicians often undertake goal-setting with people, currently our practice is patchy. We may mean well, but a focus on what WE prioritise, along with unhelpful processes (setting goals at the first appointment is really difficult for people with persistent pain, especially when we might not have established the contributing factors to disability and distress), time-frames, and for people who may be at the “making sense” stage of their rehabilitation (Lennox Thompson, Gage & Kirk, 2019), a focus on future achievements may be premature.

We might also need to develop a deeper understanding of goal-setting theory, and learn processes rather than techniques to help someone move towards the life THEY want to live, rather than a simulation consisting of multiple “goals” that have to be done each day.

Alexanders, J. and C. Douglas, Goal setting for patients experiencing musculoskeletal pain: An evocative autoethnography. Pain and Rehabilitation-the Journal of Physiotherapy Pain Association, 2018. 2018(45): p. 20-24.

Buchman, D.Z., A. Ho, and J. Illes, You Present like a Drug Addict: Patient and Clinician Perspectives on Trust and Trustworthiness in Chronic Pain Management. Pain medicine (Malden, Mass.), 2016.

Levack WMM, Weatherall M, Hay-Smith EJC, Dean SG, McPherson K, Siegert RJ. Goal setting and strategies to enhance goal pursuit in adult rehabilitation: summary of a cochrane systematic review and meta-analysis. Eur J phys rehabil Med, 2016

Gardner, T., et al., Goal setting practice in chronic low back pain. What is current practice and is it affected by beliefs and attitudes? Physiother Theory Pract, 2018. 34(10): p. 795-805.

Lennox Thompson, B., J. Gage, and R. Kirk, Living well with chronic pain: a classical grounded theory. Disability and Rehabilitation, 2019: p. 1-12.

Mutubuki, E.N., et al., The longitudinal relationships between pain severity and disability versus health-related quality of life and costs among chronic low back pain patients. Quality of Life Research, 2019.

Richardson, J.C., B.N. Ong, and J. Sim, Is chronic widespread pain biographically disruptive? Social Science & Medicine, 2006. 63(6): p. 1573-1585.

Wettstein, M., et al., Profiles of Subjective Well-being in Patients with Chronic Back Pain: Contrasting Subjective and Objective Correlates. Pain Medicine, 2018: p. pny162-pny162.

Secondary gain: really?


One of my most popular posts ever is one I wrote many years ago on malingering. Secondary gain, like malingering or symptom magnification is one of those terms used by people who don’t live with persistent pain, and commonly used when a person with pain doesn’t seem to be progressing “as expected”. The term is an old one, originating in the psychoanalytic literature, brought into compensation and insurance environments but never really examined (Fishbain, Rosomoff, Cutler & Rosomoff, 1995) until well after it had become a popular label.

Freud first identified the potential for gains from being unwell – primary gains referred to the direct gains obtained from developing a psychiatric illness in the face of unresolved psychic conflict while secondary gains were considered to be “an interpersonal or social advantage attained by the patient as a consequence of his/her illness”.

The sick role, or illness behaviour, is a sociological phenomenon (Bradby, 2009). As a society we permit people who are unwell to take time off responsibilities of paid employment, caring for others, socialising and doing the everyday life activities that people do. We also, in some cases, pay people to stay away from work, both to undertake recovery and to protect others from the illness in the form of sick leave entitlements and compensation. To ensure “fairness” or a sort of moral agreement between the ill person and society, humans have used healers, shaman or religious authorities to ensure the person has an authentic problem: ie, that they are morally fit to receive our help.

To most of us, particularly people in Australia and New Zealand, UK, Canada with largely socialised healthcare systems, the idea of sharing the burden of ill health through socially sanctioned support seems natural. We allow people a period of time to get well and then, when recovered, the person can return to normal activities. If the person sustains some nasty event, like spinal cord injury or brain injury, leaving him or her with ongoing ill health, we support ongoing payments (some more than others, depending on the funding bucket used). It’s easy to justify this when the person’s problems are visible – but for people with less visible, or truly invisible disabilities, our moral compass starts going awry.

For example, we have Mobility Parking: but woe betide the person with an invisible disability such as irritable bowel disorder, or panic disorder, using the park even when displaying the appropriate sticker! Tut! tut! tut! It is even more difficult with an invisible problem such as persistent pain, and even more so when the person’s problem hangs around. Secondary gain is the word whispered in the wind as people judge whether this person really has a problem – or is it “secondary gain”?

Let’s unpack the notion of secondary gain. From a behavioural perspective, behaviour is repeated if (1) something introduced afterwards increases the likelihood of the behaviour being repeated, eg a tearful child is cuddled after tripping, meaning the next time the child trips, he will look for someone to cuddle him; (2) something unpleasant is removed as a result of the initial behaviour, eg the pain of a grazed knee reduces with some topical analgesia. In these situations, the child is not usually aware that the contingency offered changes what they do – they just do what makes sense.

It’s when we start looking at people who don’t fit the typical response curve after an injury, that commentators begin flinging the term “secondary gain” around as if the person deliberately chooses to remain ill. Of course, insurers who fund compensation received by the person have a vested interest in reducing their payments and, given persistent pain can’t be objectively measured either directly or indirectly (Tuck, Johnson & Bean, 2019), will question the motives of a person who doesn’t recover. And therein lies our problem.

In our societies, medical practitioners are pseudo priests in many ways. The word of a doctor holds a great deal of weight: medical certificates, death certificates, oh and judgements about diagnosis and recovery. When it comes to insurers, the opinion of a doctor is used to verify that a person really has the problem they say they have, and can then continue receiving payment. The problem with pain is, yet again, having no direct objective measure of pain. The doctor is assumed to have special powers to detect whether a person really has pain – and yet there is considerable evidence that many medical practitioners have very little training in pain and even less in persistent pain in their training (Shipton, Bate, Garrick, Steketee, Shipton & Visser, 2018).

How is the term “secondary gain” experienced by the person living with persistent pain? Lang, Igler, Defenderfer, Uihlein, Brimeye & Davies (2018) undertook an intriguing study of how the various ways pain in adolescents can be “dismissed” by clinicians. They report that 40% of adolescents indicate their pain was dismissed by others, with almost 30% of those individuals stating this was done by a physician (p. 664). It’s probably not surprising that this kind of dismissal happens more often to female adolescents! Their study established that no, the sense of being dismissed wasn’t an indication of adolescents being “too sensitive”, but rather, that being dismissed by either misbelief (you don’t really have this pain); minimising (you have pain but it’s not as bad as you think it is); secondary gain (you’re using this as a way to avoid something like school); and psychogenic (it’s your emotional state that’s the real problem and cause) – are all likely to lead adolescents to look for another opinion, and to feel stigmatised.

So – is secondary gain a real thing? I like to look at it through a different lens. Taking the moral judgement tone out of the equation (that belief that only people who truly ‘deserve’ help should get it), I like to look at the problem of delayed recovery through a lens of problem solving.

Yes, there can be some gains from being unwell – who doesn’t like a bit of fussing or to be excused from doing something you don’t enjoy. The question is whether these gains come at the expense of other things – and there’s pretty compelling evidence that the losses outweigh any possible gains (Worzer, Kishino & Gatchel, 2009). At the same time, telling someone “you’re just doing this because you don’t want to get better” or words to that effect is not likely to help them have any desire to change what they’re doing – it seems to shift the person towards resisting any change in how they’re coping. It’s counter-productive.

Let’s look at a few losses:

  • employment (and people DO value working for reasons other than money! – think self concept, identity, social interaction, daily routine…)
  • relationship loss (partners, family roles, friendships – some of the most profound stories I hear come from men saying they no longer have mates they spend time with)
  • emotional impact (depression, anxiety, anger, demoralisation, shame, guilt)
  • financial loss (with loss of employment and increased healthcare costs) (Worzer, Kishino & Gatchel, 2009)

What traps someone into these losses? What might maintain someone’s helplessness and demoralisation? Pain, of course, but so too does shame; stigma from time away from work (employers want to know if you have a “bad back” – then run a mile); lack of confidence about capabilities (am I reliable? can I be counted on?); disability (there are some things I cannot do); limited communication (how do I ask for help?) and a myriad of other things. For the avoidance of doubt, people do not magically “get better” once they obtain their insurance payout (Fishbain, Rosomoff, Goldberg, Cutler, Abdel-Moty, Khalil, et al, 1993).

What can we do?

  1. First do no harm, that means avoiding moral judgements about motives for ongoing disability. It doesn’t help and does harm.
  2. Second, begin working on the actual problems the person is experiencing – things like building consistency in activity levels; improving communication skills; increasing confidence.
  3. Third, start addressing the social stigma associated with persistent pain. This means taking a long, hard look at ourselves as clinicians, and at our workplaces and social scenes, and insurers or funders.

Why do we run from the conversation that yes, pain does persist for a good number of people? Why don’t we acknowledge that even the best treatment in the world may not reduce pain – and that this is not the person’s fault for not trying?

This doesn’t mean researchers and clinicians should stop searching for pain reduction approaches – it does mean giving those who are not helped the chance to view living well with pain as a viable option.

Bradby, H. (2009). Defining health, defining disease. In Medical sociology: An introduction (pp. 51-64). London: SAGE Publications Ltd doi: 10.4135/9781446211724.n4

Fishbain, D. A., Rosomoff, H. L., Cutler, R. B., & Rosomoff, R. S. (1995). Secondary gain concept: a review of the scientific evidence. The Clinical journal of pain.

Fishbain, D. A., Rosomoff, H. L., Goldberg, M., Cutler, R., Abdel-
Moty, E., Khalil, T. M., et al. (1993). The prediction of return to
the workplace after multidisciplinary pain center treatment.
Clinical Journal of Pain, 9, 3–15.

Shipton, Elspeth E, Bate, Frank, Garrick, Raymond, Steketee, Carole, Shipton, Edward A, & Visser, Eric J. (2018). Systematic review of pain medicine content, teaching, and assessment in medical school curricula internationally. Pain and therapy, 1-23.

Tuck, Natalie L., Johnson, Malcolm H., & Bean, Debbie J. (2019). You’d Better Believe It: The Conceptual and Practical Challenges of Assessing Malingering in Patients With Chronic Pain. Journal of Pain, 20(2), 133-145. doi: http://dx.doi.org/10.1016/j.jpain.2018.07.002

Worzer, W. E., Kishino, N. D., & Gatchel, R. J. (2009). Primary, secondary, and tertiary losses in chronic pain patients. Psychological Injury and Law, 2(3-4), 215-224.

Undergraduate pain curriculum: What needs to be included and what doesn’t?


One of the prominent themes in social media discussions about pain is that the subjects are not given sufficient attention at undergraduate level. The results of this omission are that many entry-level clinicians don’t have the necessary knowledge, skills or attitudes for working with people who experience pain. (As an aside, it also makes my job as a postgraduate Academic Leader much more difficult: where do I start when developing a programme?!)

Luckily there is an IASP Pain Curriculum. Actually there are many of them, for many disciplines, and they provide educators with great guidance. The problem is, however, there is so much that could be included in this kind of education – and we usually don’t have much room in a programme to include it all.

The main problems with the curriculum are: the content and levels of competency required at an undergraduate level aren’t specified; most research into this area targets postgraduates, with less attention for undergraduate pain education. Most curriculum for pain have been discipline-specific, and while a consensus on the content and desired competencies of an interprofessional pain curriculum at a pre-licence or undergraduate level has been discussed, an a-priori defined competency level across professions for the items in the IASP curriculum hasn’t been established. We need cross profession agreed competencies to allow for good collaboration. (see van Lankveld, Afram, Staal, van der Sande, 2020).

In my role as Academic Coordinator for Postgrad Programmes in Pain and Pain Management, one aspect of the interprofessional curriculum that is quite difficult to navigate is how to turn topic headings into knowledge, skills and attitudes. I’m wary of teaching directly to subject (knowledge) without accompanying this with appropriate skills and attitudes – particularly at postgraduate level, given knowledge (topics) are continuing to change over time. There’s clearly some material that is highly valued by one profession over other professions – and this is normal for every discipline! And I’m not sure we can ever hope to cover every single thing.

One consistent theme in research into attitudes and beliefs among musculoskeletal clinicians is that confidence to assess and then use information from the psychosocial domain is low (Alexanders, Anderson & Henderson, 2015; Buchbinder, Staples & Jolley, 2009; Miki, Kondo, Takebayashi & Takasaki, 2020; Singla, Jones, Edwards & Kumar, 2015). This problem is not isolated to physiotherapists, but cuts across all professions, including psychologists referred patients with “medically unexplained symptoms” (Brittni & Williams, 2020). I wondered if this area has been given sufficient emphasis in our curriculum, and most especially, whether opportunities to develop skills and attitudes that support equitable and effective pain management are developed.

van Lankveld, Afram, Staal, van der Sande (2020) used interprofessional expert panel groups, followed Delphi process, and incorporated a measure of competency (the Dublin Descriptors), to establish which of the many areas of the pain curriculum should be prioritised. This makes for interesting reading, as some of the areas considered integral to better pain management, such as the socio-political and ethical were not considered crucial, while those related to Epidemiology, Development of Pain Theories, and Mechanisms were all thought crucial. I find this interesting as stigma, equity of access to treatment, ethical use of analgesics are all areas of healthcare that directly influence what we do in treatment and in particular, what gets funded and what does not.

Developing a teaching programme from a list of topics considered important involves opinions, values, and an understanding of pedagogy. Given we live in an ever-changing information environment, I think skills and attitudes towards what is today considered “fact” need to be emphasised – how do we learn to think critically? At least part of critical thinking is reading around a topic to become familiar with current and historic models and knowledge. I also think that some of the more complex issues we need to deal with as societies are often those attitudes towards people who violate our assumptions about who is and isn’t “other”. Learning is not only about content, it’s about attitudes towards the subject matter. And some of these attitudes are buried deeply beneath community assumptions and values. To uncover these attitudes, then help people reflect critically on them and their clinical implications is, I think, one of the tasks educators need to address.

For that reason, in my 5th year undergraduate medical teaching, I ask students to undertake a case study where their job is to listen to the person with pain, identify risk factors and protective factors for recovery and return to optimal functioning and participation, and then offer individually tailored recommendations to the person, in language the person will understand. My hope is that these future medical practitioners will have developed some empathy and strategies for caring for and encouraging patients with pain to be less afraid of their pain, and more able to go on with their lives.

What should go in undergraduate training? I think we can weave all the content of these curriculum into our undergraduate training, but we should also leave students with the certain knowledge, skills and attitudes that this area of study is going to change. And that means lifelong learning about pain, people, science and self.

Alexanders, J., Anderson, A., & Henderson, S. (2015). Musculoskeletal physiotherapists’ use of psychological interventions: a systematic review of therapists’ perceptions and practice. Physiotherapy, 101(2), 95-102. doi: 10.1016/j.physio.2014.03.008

Buchbinder, R., Staples, M., & Jolley, D. (2009). Doctors with a special interest in back pain have poorer knowledge about how to treat back pain. Spine (Phila Pa 1976), 34(11), 1218-1226; discussion 1227. doi: 10.1097/BRS.0b013e318195d688

Crawford, C., Ryan, K., & Shipton, E. (2007). Exploring general practitioner identification and management of psychosocial Yellow Flags in acute low back pain. N Z Med J, 120(1254), U2536.

Cowell, I., O’Sullivan, P., O’Sullivan, K., Poyton, R., McGregor, A., & Murtagh, G. (2018). Perceptions of physiotherapists towards the management of non-specific chronic low back pain from a biopsychosocial perspective: A qualitative study. Musculoskelet Sci Pract, 38, 113-119. doi: 10.1016/j.msksp.2018.10.006

Jones, Brittni, & Williams, Amanda C. de C. (2020). Psychological therapists’ judgments of pain and treatment decisions: The impact of ‘medically unexplained symptoms’. Journal of Psychosomatic Research, 131, 109937. doi: https://doi.org/10.1016/j.jpsychores.2020.109937

Miki, T., Kondo, Y., Takebayashi, T., & Takasaki, H. (2020). Difference between physical therapist estimation and psychological patient-reported outcome measures in patients with low back pain. PLoS One, 15(1), e0227999. doi: 10.1371/journal.pone.0227999

Singla, Mukul, Jones, Mark, Edwards, Ian, & Kumar, Saravana. (2015). Physiotherapists’ assessment of patients’ psychosocial status: are we standing on thin ice? A qualitative descriptive study. Manual therapy, 20(2), 328-334.

van Lankveld, W., Afram, B., Staal, J. B., & van der Sande, R. (2020). The IASP pain curriculum for undergraduate allied health professionals: educators defining competence level using Dublin descriptors. BMC Med Educ, 20(1), 60. doi: 10.1186/s12909-020-1978-z

Cannabis questions… so many questions!


Recently I wrote a summary of my readings around cannabis for pain. It’s a hot topic in New Zealand because we’re holding a referendum on cannabis law reform next year, and as expected, all the lobby groups are out in force! My interest is sparked because so many of the people I work with as patients also use cannabis – and the evidence from RCTs is pretty poor. And YET as a recent study colleagues and I carried out with people who have spinal cord injury and neuropathic pain, cannabis is something that holds appeal, and interestingly, seems to provide some useful effects.

The study we conducted (see it here: https://rdcu.be/bTuup) was a qualitative investigation of people with spinal cord injury who used and found cannabis helpful.

We found that people mainly trialled “conventional” pain relief such as gabapentin, pregabalin, nortriptyline, amitriptyline, and a range of opioids before they started testing cannabis and derivatives. The side effects and poor effect on pain of these pharmaceuticals have been well-documented so I wasn’t at all surprised to hear our participants describe feeling “foggy”, “unable to think”, and limited effect on their pain. This is common because neuropathic pain is such an extraordinary problem – there’s no single mechanism involved, there’s a cascade of effects, many of them in the brain and that means drugs effective on on those mechanisms are also likely to have side effects on cognitive alertness.

Our participants (and remember that cannabis is currently illegal in New Zealand but widely available in the hidden green market) researched their options carefully. They tried various forms of cannabis, often erroneously believing that CBD-heavy forms are (a) easy to identify from phenotype and (b) have an effect on pain. This isn’t the case – it’s the THC-CBD combination that appears to have greatest effect, with the THC being the heavy lifter when it comes to pain reduction.

Not only did our participants try a range of cannabis plants, they also tried various ways to use the product. Vaping, smoking, oil capsules, canna-chocolate, canna-cookies, chopped up in a salad, rubbed on in an ointment – virtually every route possible!

Importantly, every one of our participants denied wanting to feel stoned or high. In fact, they said that was the opposite of their intention – after all, if they wanted altered consciousness they all had access to prescribed medications that could do the trick! No, our participants wanted to do what we all want: take part in their own lives on their own terms. They wanted to participate in family life, do the shopping, play with their kids, just to function.

So, did it work? Well here’s where things get analytically tricky. Yes, almost all participants said cannabis acted quickly, alleviated their pain and gave them good sleep. BUT they also said their pain was altered, changed – they could more easily distance themselves from their pain. So was reduced pain intensity the critical effect, or was it more about feeling differently towards the pain? One participant described being able to “get in the zone” to meditate more easily. And from my perspective, being able to sleep better may itself provide important benefits on pain reduction (Kukushin & Poluektov, 2019).

So my question is whether pain intensity is the right metric in studies examining cannabis for pain relief? RCTs show very small effect sizes of cannabis/THC+CBD on pain intensity, and the research quality is pretty dismal (Campbell, Stockings & Neilsen, 2019).

If cannabis doesn’t reduce pain terribly much, then why are people so passionate about having it as an option? And why do they say it helps? This, my friends, is the real question I think we need to be answering.

Our study showed that participants reported doing more. And isn’t the reason for prescribing analgesia precisely so that people have less pain – and can do more? Our study also hinted at something else important: people using cannabis chose when, where and how they used this drug. To me this is something rarely discussed in pharmaceutical research. CHOICE allows people to make their own decisions. Making a decision for oneself is an important concept in New Zealand – autonomy, self efficacy, self determination. For people from whom so many freedoms have been lost (independent mobility, self cares, cooking, financial independence) being able to choose how to use a drug that alters pain even just a little is an important point.

When digging more deeply into the experiences our participants had when taking cannabis, I was struck by some intriguing points. Most acknowledged that while pain changed, it didn’t disappear. The effect was rapid when the product was vaped, or smoked. Dose didn’t escalate. There was a ritual aspect to using it – the same routine every day. There weren’t high expectations that it would help initially, but they grew quickly once participants tried it. All of which leads me to wonder at the influence of the meaning response (especially when people favoured what they thought were CBD varieties, when CBD isn’t as effective on pain as it is on anxiety).

Some additional points: many of our participants had to navigate a green, underground market. One with which they were unfamiliar and often uncomfortable with. Supply was erratic and fraught with concern about things like traveling with cannabis and cannabinoid products, the fear of discovery, the need to encounter people who are working on the wrong side of the NZ law. Supplies may, or may not, be pure or contain what the consumer wants. Many of our participants had never tried cannabis before their spinal cord injury. Information, accurate information, especially from health professionals, was scarce – and yet many medical practitioners were giving at least tacit approval (in an information vacuum). Our participants said they didn’t rely on what they were told by health professionals: they’d rather believe the grower, the naturopath, their friends, the internet.

All of these things should give health professionals, and law-makers, some food for thought. An underground market means no regulation. No regulation means cannabis is off topic for health educators. Absence of quality information means risks as well as benefits are unavailable. Lack of trust emerges when those who are usually respected for their opinions cannot, or will not, provide clear direction. And our medical practitioners may have trained in the days when popular belief was that cannabis is a ‘gateway’ drug to harder, more dangerous ones. At the very least, the attitudes towards people who use cannabis recreationally has infused our society such that to call someone a “stoner” is equivalent to calling them a “loser”.

For what it’s worth, I do not currently support medical prescribing of cannabis the plant. I think doctors need to know the effects, side effects, interactions, indication, doses, and contraindications of a drug before they put their signature on the line. After all, their responsibility is “first do no harm”. Yes I know cannabis is thought to be a safe drug – but there are adverse effects, the active components do interact with other drugs, and when it’s unknown how much to take, or the best route for administration, then I think it’s unfair to place that burden on a medical practitioner. Does this mean I think cannabis should remain illegal? Not at all! The current legal situation is absolutely doing harm. Regulation, information and maybe allowing people to make their own informed decisions about cannabis might be a better option. After all, alcohol is an analgesic – but we don’t march down to our doctors asking for a prescription for gin and tonic, now do we? We don’t need to because alcohol with all its harms is legal.

Where do we go from here? I think there’s merit in at least two questions being explored. (1) What is the effect of cannabis on pain – not on intensity, but on the experience of pain? Does cannabis help people achieve a meditation state? Does cannabis help via reduced anxiety? Does cannabis help via improved sleep? and (2) How does cannabis use influence participation? Is it through being able to choose when, where, and how cannabis is used? Is it indirectly through reduced anxiety?

And of course, if much of the effect is via a meaning response, what does this tell us about how we can harness our own endogenous opioid and cannabinoid systems? Can we do it without needing to use agents like cannabis?

Campbell, G., Stockings, E., & Nielsen, S. (2019). Understanding the evidence for medical cannabis and cannabis-based medicines for the treatment of chronic non-cancer pain. European archives of psychiatry and clinical neuroscience, 269(1), 135-144.

Kukushkin, M. L., & Poluektov, M. G. (2019). Current Views on Chronic Pain and Its Relationship to the State of Sleep. Neuroscience and Behavioral Physiology, 49(1), 13-19. doi: 10.1007/s11055-018-0684-3

Three letter acronyms and what they mean – CBT, DBT, CFT, ACT – not alphabet soup!


Once you begin to dip your toes into psychological therapies, it doesn’t take long before you begin to see TLAs all over the place. So today I’m going to post on two things: some of the TLAs, and why or how we might consider using these approaches in pain rehabilitation.

The first one is CBT, or cognitive behavioural therapy. CBT grew out of two movements: behaviour therapy (Skinner and the pigeons, rats and all that behaviour modification stuff), and cognitive therapy (Ellis and Beck and the “cognitive triad” – more on this later). When the two approaches to therapy are combined, we have cognitive behavioural therapy where thoughts and their effect on emotions and actions are the focus of therapy, with a secondary focus on behaviour and how behaviour can be influenced by (and influence) thoughts and emotions.

In pain rehabilitation, cognitive behavioural therapy is used primarily by psychologists, while a cognitive behavioural approach is what underpins most of the multidisciplinary/interprofessional pain management programmes. These programmes were very popular and effective during the 1980’s and 1990’s, but have faded over time as insurers in the USA in particular, decided they were expensive and should instead be replaced by what I call “serial monotherapy” – that is, treatments that were provided in a synthesised way within interprofessional programmes are often now delivered alongside or parallel to one another, and typically with very limited synthesis (or case formulation). A question yet to be answered is what effect this change has had on outcomes – my current understanding is that the outcomes are weakened, and that this approach has turned out to be more expensive over time because each discipline involved is seeking outcomes that fit with their priorities, and there is far more opportunity for duplication and gaps in what is provided.

Cognitive behavioural approaches underpin the “Explain Pain” or pain neurobiology education approach. The theory is that people who hold unhelpful beliefs about their pain can become fearful of what the pain means. Once they hold more helpful or realistic beliefs about their pain, that emotional zing is reduced, and it’s less scary to begin moving.

Cognitive behavioural approaches also underpin cognitive functional therapy. In cognitive functional therapy, as a person begins to move, the therapist asks about what’s going through their mind, and establishes through both movement experiments and information, that they’re safe to move, and can do so without fear (O’Sullivan, Caneiro, O’Keeffe, Smith, Dankaerts, Fersum & O’Sullivan, 2018).

When carrying out graded exposure, in the way that Vlaeyen et al describe, a cognitive behavioural approach is integral. In this approach, the classic relationship between avoidance and a stimulus (bending forward, for example), is challenged in a series of behavioural experiments, beginning with movements the person fears the least, and progressing over time to those the person fears the most.

There’s good evidence from psychological therapies, and also from within pain rehabilitation research, that it’s the behavioural aspects of therapy that do the heavy lifting in pain rehabilitation (Schemer, Vlaeyen, Doerr, Skoluda, Nater, Rief & Glombiewski, 2018).

And, in the words of Wilbert Fordyce, psychologist who first started using a behavioural approach for persistent pain management “Information is to behaviour change as spaghetti is to a brick”.

So don’t expect disability (which involves changing behaviour) to shift too much without also including some strategies for helping someone DO something differently. And if a person doesn’t accept what you’re telling them – sometimes it’s more effective to try helping them do things differently first, and use that experiential process rather than talk, talk, talking.

ACT (acceptance and commitment therapy), and DBT (dialectical behaviour therapy) are both what is known as “third wave” cognitive behavioural therapies. They both involve understanding the relationship between thoughts, emotions and behaviours, but add their own flavours to this. In the case of ACT, the flavour that’s added is “workability” and contextual behavioural analysis, with relational frame theory as the underpinning theoretical model. Instead of directly tackling the content of thoughts, ACT focuses on changing the relationship we have with thoughts, and shifts towards using values as directing the qualities of what we do (McCracken & Vowles, 2014). Dialectical behavioural therapy helps people build social relationships that support them, begin to recognise strengths and positive qualities about themselves, recognise unhelpful beliefs about themselves and shift towards more helpful beliefs, and to use coping strategies to help soothe and calm emotional responses. I draw on ACT as my primary framework for pain rehabilitation (actually for my own life too!), but I haven’t seen as much use of DBT in this area.

Compassion focused therapy, the other CFT, is also a psychotherapy designed to help people become compassionate towards themselves and others. The theory behind this are understanding three main “drives”: the threat and self-protection system, the drive and excitement system, and the contentment and social safeness system. When these are under-developed, or out of balance, unhelpful behaviours and unhappiness occur. CFT aims to help people bring the three systems into balance. Given that many of the people who experience persistent pain have also experienced early childhood trauma, and concurrently endure stigma and punitive responses from those around them because of their pain, CFT offers some strategies to help effect change on an unsettled and fearful system. CFT uses self appreciation, gratitude, savouring, as well as mindfulness (non-judgemental awareness), and compassion-focused imagery to help soothe the system (Penlington, 2019; Purdie & Morley, 2016).

Along with these TLAs, you can also find many others. I think for each approach, understanding the theory behind them is crucial. While some of these approaches appear very “psychological”, whenever we begin unpacking them, we can start to see how most of what we offer in physical or occupational therapeutic approaches require us to draw on them.

Skills like guided discovery, motivational interviewing, goal-setting, values clarification, graded activity, helping people experience difference in their own lives, soothe their own body, become more comfortable with a sense of self that has to grapple with pain – unless we’re knocking our patients unconscious, we’re going to be using these so-called “psychological” skills.

If we are doing good therapy, I think we need to be as excellent as we can in all the skills required. This includes being excellent at the way we thoughtfully and mindfully use communication.

Psychological therapies all incorporate communication, and responses to people who are fearful of something. Most of us are involved in helping people who are afraid of their pain – and as a result are not doing what matters to them. If we don’t help people do what’s important in their lives, what on earth ARE we doing? For this reason, we need to employ the most effective tools (ie psychological approaches) in just the same way we use goal-setting (psychological), respond with encouragement to someone attempting a new thing (psychological), start with something the person can only just do, then grade it up (psychological), help down-regulate an overly twitchy nervous system (psychological), teach new skills (uh, that’s quite right, psychological!). I could go on.

What don’t we do if we’re using psychological strategies? We don’t dig into deep trauma, substance abuse, criminal behaviour, self harm, psychopathology. Though, we do address some psychopathology if we recognise that depression and anxiety both respond quite nicely to scheduling positive activities, and meaningful movement (ie exercise). Perhaps our artificial divide between “physical” and “mental” needs to be altered?

McCracken, L. M., & Vowles, K. E. (2014). Acceptance and commitment therapy and mindfulness for chronic pain: Model, process, and progress. American Psychologist, 69(2), 178.

O’Sullivan, P. B., Caneiro, J. P., O’Keeffe, M., Smith, A., Dankaerts, W., Fersum, K., & O’Sullivan, K. (2018). Cognitive functional therapy: an integrated behavioral approach for the targeted management of disabling low back pain. Physical therapy, 98(5), 408-423.

Penlington, C. (2019). Exploring a compassion-focused intervention for persistent pain in a group setting. British journal of pain, 13(1), 59-66.

Purdie, F., & Morley, S. (2016). Compassion and chronic pain. Pain, 157(12), 2625-2627.

Schemer, Lea, Vlaeyen, Johan W., Doerr, Johanna M., Skoluda, Nadine, Nater, Urs M., Rief, Winfried, & Glombiewski, Julia A. (2018). Treatment processes during exposure and cognitive-behavioral therapy for chronic back pain: A single-case experimental design with multiple baselines. Behaviour Research and Therapy, 108, 58-67.

Toye, F., & Barker, K. (2010). ‘Could I be imagining this?’–the dialectic struggles of people with persistent unexplained back pain. Disability and rehabilitation, 32(21), 1722-1732.

Veehof, M. M., Trompetter, H. R., Bohlmeijer, E. T., & Schreurs, K. M. G. (2016). Acceptance-and mindfulness-based interventions for the treatment of chronic pain: a meta-analytic review. Cognitive behaviour therapy, 45(1), 5-31.

Who am I? The sense of self in chronic/persistent pain


One of the most pervasive descriptions of what it is like to live with persistent pain is the loss of sense of self. Time after time in qualitative research we read about people feeling they’re in “limbo land”, losing confidence that they can do what matters in their lives, feeling stigmatised and isolated – not themselves any more. An in-depth meta-ethnography of qualitative research showed that pain undermined participation, ability to carry out daily activities, stymied a sense of the future, and intruded on the sense of self (MacNeela, Doyle, O’Gorman, Ruane & McGuire, 2015).

To understand the idea of “self”, I poked about a little in the literature, and found a title I like “Becoming who you are” (Koole, Schlinkert, Maldei & Baumann, 2019). The theoretical propositions of this paper relate more to self-determination than self-concept – but that title “Becoming who you are” resonated strongly with me.

When I read through pain rehabilitation research and theory, especially that dealing with learning how to live well with pain, I rarely see anything written about how we might help people who feel alienated from their sense of self. Scarcely a word. Except in the psychological literature. There’s a bit about self-discrepancy theory (See E. Tory Higgins works for much more about self-discrepancy), where the “imagined self”, the “real self”, the “feared self” and the “ought self” don’t match – but not much about what to do about helping people restore a sense of self, particularly in physical and “functional” rehabilitation.

Silvia Sze Wai Kwok and colleagues (2016) argue that psychological flexibility can play a role in helping people adjust to chronic pain. They found that psychological flexibility mediated between self-discrepancy (how close is my current self to my feared or ideal self?) and pain outcomes (distress, disability and so on). In other words, the degree to which people could flexibly adjust their goals and actions to suit what they could and couldn’t do made a difference.

This seems like common sense. Kinda. As the authors put it: “recognition of self worth and self-values could be attuned through flexible (re)construction of self-concept in response to changing contexts. These adaptations and regulatory functions then in turn may predict the subjective feelings of pain interference, emotional distress and pain tolerance level perceived.”

So my question is: how often does this become openly discussed in pain rehabilitation? Particularly by occupational therapists and physiotherapists – the clinicians who most often work on goals and helping people achieve them?

Whether a person is “motivated” to pursue important goals depends on whether the goals are important to them and whether they think they’ll successfully achieve them. When someone is “non-compliant” it’s because either the rehabilitation activities are not as important as something else in the person’s life, OR they’re not at all confident they can be successful at it. An enormous part of our job as rehabilitation professionals is helping people re-examine what they want to do and helping them adjust how to achieve the underlying values, even if the particular goal isn’t possible – yet. So, for example, if a person really values being a conscientious worker but can’t sustain a full working day, we can either help them fell OK about being conscientious for fewer hours, or we can make the work less demanding. I see this as an especially valuable contribution from occupational therapists.

Should rehabilitation clinicians be involved in this kind of “self-concept” work? I think so – especially occupational therapists. Occupational therapists are about doing, being and becoming – by doing things, we express who we are, and what we choose to engage in also shapes our perceptions of ourselves. As therapists we can’t help but influence a person’s self-concept – if we’re hoping to increase self-efficacy, we’re automatically influencing self-concept. If we’re working on goals, we’re influencing self-concept. If we’re working on participation in life, we’re working on self-concept.

And physiotherapists? Self-concept? Yep – of course. If we’re helping someone do exercise, that’s going to influence that person’s beliefs about exercise and their capabilities – that in turn is going to influence self-concept. (psst! it might be even more powerful if movements are done in the context of daily life, where feedback is real, meaningful and ever-present).

Persistent pain challenges the automatic assumptions people hold about what they can and can’t do, what they’re good at, what’s important in life, and how to engage with “the world” at large. Our job as clinicians is to be sensitive to just how confronting it is to find that what used to be effortless and meaningful is now daunting and requires more concentration and thought than we ever believed. I think that’s part of our job, irrespective of professional labels.

Koole, Sander L., Schlinkert, Caroline, Maldei, Tobias, & Baumann, Nicola. (2019). Becoming who you are: An integrative review of self-determination theory and personality systems interactions theory. Journal of Personality, 87(1), 15-36. doi: 10.1111/jopy.12380

Kwok, Silvia Sze Wai, Chan, Esther Chin Chi, Chen, Phoon Ping, & Lo, Barbara Chuen Yee. (2016). The “self” in pain: The role of psychological inflexibility in chronic pain adjustment. Journal of Behavioral Medicine, 39(5), 908-915.

MacNeela, Padraig, Doyle, Catherine, O’Gorman, David, Ruane, Nancy, & McGuire, Brian E. (2015). Experiences of chronic low back pain: a meta-ethnography of qualitative research. Health Psychology Review, 9(1), 63-82.

Having The Conversation…


Over the past few weeks I’ve been posing some of the curly questions that I don’t think have yet been answered in pain rehabilitation. In fact, some of them have yet to be investigated in any depth. Today I’m stepping out into the abyss to offer my current thoughts on one question that has been rattling around for some time: how do we have a conversation about pain and its persistence? I want to begin by stating very emphatically, that I do believe pain can change. And that the way a person views or interprets their experience can change, and there is reversibility in pain intensity and quality. Having a conversation about persistence doesn’t mean pain will inevitably hang around. So why talk about it?

One major reason comes from people living with pain. In a recent book (Meanings of Pain) I quoted several qualitative studies where “pain acceptance” and conversations about this were highly valued by people with pain – in fact, in my own research, learning that pain would either likely remain in its current form, or would be a feature in some way, was part of a turning point (Lennox Thompson, Gage & Kirk, 2019). The turning point was away from pursuing pain reduction as a primary goal, and towards living a life. “And then I finally said to myself, nothing’s going to work. I might as well try to live with it, and learn to live with it, and since then I haven’t tried pursuing any type of pain relief” (Henwood, Ellis, Logan, Dubouloz & D’Eon, 2012), “All the previous treatments dealt with taking
away the pain. This is the first time one gets a treatment that focuses on acceptance of the pain, and you really understand that this is chronic pain that will never disappear; it’s the first time one has received the message from this angle”
( Pietilä, Stålnacke, Enthoven, Stenberg, 2018)

I guess I don’t see this as a dichotomous choice. It’s not simply “pain reduction” OR “pain acceptance”. I think we can have more than one goal. It’s a matter of emphasis, where energy gets spent. Mark Sullivan and Betty Ferrell argue that health professionals need to reconceptualise their contribution to health: is it to treat disease, or to “advance the person’s capacity for personally meaningful action?” (Sullivan & Ferrell, 2005).

The issue is, that doing what matters can mean “doing what matters provided that pain isn’t present”, or “doing what matters provided that pain has gone”, or “doing what matters provided that it feels good”.

Back to the conversation. The purpose of the conversation is to allow some wiggle room around the “provided that”. Because, in the pursuit of pain reduction life can pass by. Jobs go, relationships fail, kids grow up and leave home, expertise and capability become obsolete, mates develop new pursuits and meanwhile, as people living with persistent pain have said, they’re living in “limbo land”. Reconnecting with values-based activities as one way to feel more whole again often means navigating the meaning of pain fluctuations. It can mean developing ways to allow pain to be present without trying to change the experience, or escape the experience.

Guiding the conversation

I routinely use guided discovery as my main form of therapeutic communication. My approach to The Conversation is to begin by finding out about the person’s theory of their pain – what do they think is going on? What have they been told and what sense have they made of this? What has it been like to have this experience bring attention to daily movements and activities? How are they going about daily life? What’s helped, what hasn’t? What have they given up? What new things have they had to do? What’s that been like?

I usually jot down the good and not so good of all of this – it helps to have a record both for the person and for me. I like to reassure people that they’re doing their very best in what can feel like an unrewarding endeavour. I also explore the impact of treatments on the person. What is it like to take medications, do exercises, have to make time to attend appointments? What is it like to tell one’s story to so many people – who often don’t reciprocate?

Drawing from both my clinical experience and from what I’ve learned about ACT (Acceptance and Commitment Therapy), I offer people a chance to reflect on the impact of not only pain, but also the process of getting treatment. On the work that goes into rehabilitation. I ask them what sense they make of life at the moment. What do they take from all of this?

And in that moment I also ask about what’s important in life. What matters. And how well is that person able to do at least something of what matters in their life? And is it possible to move towards doing more of what matters in life even in the presence of pain? And what sense does the person make of all we’ve discussed?

If I’m asked about whether pain will go, I am open about the possibility that it will not completely vanish. This reflects my understanding of neuroscience, the many many studies into all kinds of treatments, and from the words of people in qualitative studies who indicate that this is an important acknowledgement. I’m also not suggesting that anyone stop participating in pain reduction efforts, not at all. It’s not my decision. It’s never our decision – it’s the person with pain who must decide. I will point out, though, that I don’t think living well with pain is often offered to people as a positive option. It’s often delivered as “well if this doesn’t work, you can try doing some pain management”. Not exactly a ringing endorsement. Not even a neutral suggestion.

The Conversation isn’t about stopping treatment. It’s not about pain reduction vs pain management. It’s not about pain persistence as much as it is about ensuring rehabilitation focuses on what matters to people. For rehabilitation is not about eradicating the disease that caused the problem, it’s about restoring and optimising capabilities, enabling people to participate in their own lives as much as possible. Sometimes, in the pursuit of restoring capabilities, perhaps participating in life is forgotten.

Henwood P, Ellis J, Logan J, Dubouloz C-J, D’Eon J. Acceptance of chronic neuropathic pain in spinal cord injured persons: a qualitative approach. Pain Manag Nurs. 2012;13(4):215–22.

Lennox Thompson B, Gage J, Kirk R. Living well with chronic pain: a classical grounded theory. Disabil Rehabil. 2019:1–12.

Pietilä Holmner E, Stålnacke B-M, Enthoven P, Stenberg G. The acceptance. J Rehabil Med. 2018;50(1):73–9.

Sullivan, Mark, & Ferrell, Betty. (2005). Ethical Challenges in the Management of Chronic Nonmalignant Pain: Negotiating Through the Cloud of Doubt. The Journal of Pain, 6(1), 2-9.