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.

A lot can happen in a week…


This time last week I had this mad idea to share some of my thoughts about “exercise” – not thinking that post would create such a stir! Is it really so radical to recognise that not everyone likes That Word? And that for some, the benefits of exercise aren’t as valued as other important parts of life? And that movements, like people, come in all shapes and sizes so what YOU like might not be something I like?

In New Zealand we’ve also had a new emergence of Covid19 in the community, after 102 days without any community-based cases. This has been very scary for some of us, a real frustration for others, and an economic blow for many others. It’s brought out the worst in our electioneering politicians (National, I’m looking at you), and in turn led to bad behaviour on the interwebs.

Bad behaviour, too, between clinicians on the interwebs. Behaviour unbecoming of senior white male clinicians, mainly. Not that this kind of unsocial behaviour is surprising to me: among some of our rehabilitation professionals there is a culture of “calling out” people who don’t hold similar beliefs, culminating in atrocious behaviour that serves no-one well. (ever heard of motivational interviewing and rolling with resistance?)

In case you hadn’t worked out, I’m a woman. Furthermore I’m a middle-aged woman – at the age where I suddenly become invisible. Those micro-aggressive behaviours of opening doors for me, lustful glances as I walk by, offers to buy me a drink… they’ve vanished. I’m like a piece of wallpaper. Because, as all women find, so much of my influence over the years has been based on my appearance.

Feminism has been part of my life since forever. I can’t recall when I first started resenting the ideologies that meant I wasn’t allowed to consider metalwork or wooodwork but had to study sewing and “home economics”. Or that I was advised I could be a nurse or a teacher, but never, despite having good marks in English, chemistry, biology, and physics (yeah I was that A-grade student) encouraged to consider a career in science or medicine.

These were overtly anti-female actions.

Then there have always been the slightly (but not always so minimal) “obligations” to watch how I dress, where I walk, how I sit, how I express an opinion (did you know I have a “strong personality”?!!). The time a senior male asked the two of us in an office “would one of you girls do this photocopying” – when both “girls” were over 50 years old?! Ask yourself who organises the coffee at your meetings – and who tidies up afterwards…

I look at the academics in my department: six women. Two are young and involved in the CREATE group, lab science developing bio-engineering solutions for cartilage degenerations. The other four have all had at least 15 years clinical career before completing a PhD, then maintaining that clinical career while also carrying out research. The men? Not so much.

When we begin to look at systematic disadvantages surrounding female participation in research, the strengths women bring into our applied clinical research programmes are often overlooked, particularly in career progression in academia. For example, we’re well-connected. We’ve had experience in clinical work so we can ask those awkward questions – and we often do. These questions are often complex because they’ve arisen from our daily clinical experiences. This means the questions lend themselves to mixed methods research, or intensive repeated measures research (single subject experimental designs, ecological momentary assessment designs), action research, qualitative methods. This kind of research doesn’t get published in Nature or Science.

And then we come to collaborations – where people meet in person (pre-Covid) it’s common to find women’s voices are not as loud, noticed or solicited. This practice begins at school (Wieselmann, 2019), and is evident most clearly in male-dominated work (Wright, 2016). While gender sensitivity training is available, it’s not possible to establish whether outcomes are improved, and many of these studies are about LGBT populations (Lindsay, Resai, Kolne & Osten, 2019). Intersectionality (where people are disadvantaged in many ways – eg sexual orientation, age, disability AND gender and ethnicity) means people in these groups are often stigmatised or invisible, excluded simply because they don’t fit with the established (ie male) norms. We have so much to do.

There have been superb examples of women researchers making themselves visible on social media. I’ve been fortunate to be included in some of these endeavours – raising my personal profile, but more importantly, helping me and others find each other!

My point in writing this post is that while many men are wonderful examples of compassionate, generous, kind and strong masculinity, there are others who are oblivious to their privilege. In their fear (although they would deny that they are afraid) they lash out at women who will not obey the rules this group of men cling to. We can call this fragility. A state where it’s perfectly fine to say that a defender of female under-representation is considered to have “allodynia of emotional pain”, arguing that “if you are this sensitive you might reconsider engaging in the Twitterverse.” Not only unprepared to acknowledge one woman’s response to his behaviour, but arguing for normalisation of this behaviour, along with exclusion for those who don’t agree.

I am calling for actively promoting the work of female commentators, researchers, clinicians and educators. Our voices are as valid as the currently dominating male ones.

I’m not calling for men like the one I’ve quoted above to be silent (though it’s hard to HEAR if you’re always doing the TALKING). I am calling for men who are recipients of privilege just by being male and because our society has held male norms as more valuable than female norms to be the change our societies need. Especially in healthcare where the attitudes I have seen demonstrated on Twitter suggest little sensitivity towards those with different experiences. I do wonder about the interactions with patients by those who have recently revealed their privilege and limited sensitivity on Twitter.

We can do better. Be positive and kind and compassionate and strong. We’ve got this, women.

Lindsay, S., Rezai, M., Kolne, K., & Osten, V. (2019). Outcomes of gender-sensitivity educational interventions for healthcare providers: A systematic review. Health Education Journal, 78(8), 958–976. https://doi.org/10.1177/0017896919859908

Wieselmann, Jeanna. (2019). Student Participation in Small Group, Integrated STEM Activities: An Investigation of Gender Differences. Retrieved from the University of Minnesota Digital Conservancy, http://hdl.handle.net/11299/209027.

Wright, T. (2016) Women’s Experience of Workplace Interactions in Male‐Dominated Work: The Intersections of Gender, Sexuality and Occupational Group. Gender, Work and Organization, 23: 348– 362. doi: 10.1111/gwao.12074.

Is exercise the new snake oil? or just a dirty word?


If you haven’t heard about the health benefits of exercise in the last 10 years or longer, then you’ve probably been a hermit! Exercise can do all these wonderful things – help you lose weight, reduce heart disease, moderate insulin and blood glucose levels, improve your mental health, and yes! reduce pain and disability when you’re sore. (check this list out)

The claims sound suspiciously similar to the claims made by old snake oil merchants – or the amazing White Cross Electric Vibrator!

Well perhaps there’s a little more research supporting claims for exercise… but are those claims being inflated just a little? When it comes to pain, particularly persistent pain, perhaps so…

But before I launch into some of the problems with exercise research, I have another problem with “exercise” – and that’s the word itself.

According to Wikipedia (and no, it’s not an academic reference!!) “Exercise is any bodily activity that enhances or maintains physical fitness and overall health and wellness.” Winter and Fowler (2009) in an interesting paper looking at definitions of exercise, found that “exercise” and “physical activity” are essentially the same and differ only in terms of motivation/intent, finally arriving at this definition: “A potential disruption to homeostasis by muscle activity that is either exclusively or in combination, concentric, isometric or eccentric.” Whew! Glad we’ve got this sorted.

But given the sticky nature of our minds, and that very few of us are inclined to spend hours debating the technical details, the word “exercise” has picked up quite a few other meanings. For me it conjures up images of sweaty, lycra-clad blokes grunting in front of enormous mirrors while they heave on lumps of metal to the pumping rhythm of loud music (and the eyes that follow my every move). It also raises the spectre of school sports where I was inevitably the last person chosen for any sports team, the last to come in after every run, the person who got hit in the face by the ball, who got her thumb smacked by the hockey stick the week before my piano exams…

I’m not alone in my distaste for “exercise”. Qualitative researchers have often investigated how people with pain view exercise: “I get the comments that “It is not dangerous” and that “you are not going to be worse.” I do not believe it is dangerous … but actually it happens that I become worse after .… I know that the pain will increase. And they … talk to me about pain that is not like my pain.” (Karlsson, Gerdle, Takala, Andersson & Larsson, 2018)

Boutevillain, Dupeyron, Rouch, Riuchard & Coudeyre (2017) in another qualitative study, found that people with low back pain firstly identified that pain intensity interfered “any minimal physical activity, standing still in one spot, is torture” (line 1683); “if my back hurts, I don’t do any activity that’s for sure, I am not going to the garden and do some digging, that is out of the question! I have two children, if I am in pain and they want to play, my back hurts and I can’t play with them. My back hurts I can’t do it. It’s not that I don’t want to it is just that I cannot. I am unable to” (line 29). In turn, motivation for exercise was reduced “I don’t have any desire to exercise. A lack of motivation, even apprehension” (line 390); “there needs to be this spark to get motivated, and I just don’t have it” (line 1335). Along with the lack of perceived benefits for some: “Sometimes I try to exercise and then I’m in pain, looking back had I known it would hurt I would probably not have done it” (line 2037) “It can be harmful, I give you an example: I have a colleague with low back problems, similar to mine, and she loves to take step classes, but each time she exercises too much, she is in pain but continues. I think she should stop, it is quite dangerous for her” (line 378).

A systematic review by Slade, Patel, Underwood and Keating (2014) found that “Individuals were more likely to engage within programs that were fun and had variety than ones that were boring, unchallenging, or onerous because they disrupted daily activities.” They added that “Difficulties with exercise adherence and not seeing benefits of exercise were frequently attributed to lack of time and fit into daily life.” Quotes drawn from the studies included in this review show that lack of confidence, negative experiences at the time, and poor “fit” between the exercises selected and individual preferences influence whether exercise was carried out consistently.

At the same time as these negative views, many participants in qualitative studies report that they use “movement” as a key strategy for their daily management. Whether movement looked like “exercise” as prescribed by PTs or trainers is a little less clear – people use the word “exercise” to mean many different things, hence Karlsson and colleagues (2018) combined the term “physical activity and exercise”.

Now one very important point about exercise, and one that’s rarely mentioned, is how little exercise actually reduces pain – and disability. A systematic review of systematic reviews from the Cochrane collaboration found that most studies included people with mild-to-moderate pain (less than 30/100 on a VAS) but the results showed pain reduction of around 10mm on a 0 – 100mm scale. In terms of physical function, significant improvements were identified but these were small to moderate in size.

And let’s not talk about the quality of those studies! Sadly, methodological problems plague studies into exercise, particularly sample size. Most studies are quite small, which can lead to over-estimating the benefits, while biases associated with randomisation, blinding and attrition rate/drop-outs, adherence and adverse effects.

Before anyone starts getting crabby about this blog post, here are my key points (and why I’ve taken this topic on!):

  1. Over-stating the effects of exercise won’t win you friends. It creates an atmosphere where those who don’t obtain pain reduction can feel pretty badly about it. Let’s be honest that effects on pain reduction and disability are not all that wonderful. There are other reasons to move!
  2. Exercise and physical activity can be done in a myriad of wonderful ways, research studies use what’s measurable and controllable – but chasing a puppy at the beach, dancing the salsa, cycling to work, vacuuming the house, three hours of gardening and walking around the shopping mall are all movement opportunities up for grabs. Don’t resort to boring stuff! Get creative (need help with that? Talk to your occupational therapists!).
  3. The reasons for doing exercise are enormously variable. I move because I love the feeling of my body in rhythm with the music, the wrench of those weeds as they get ripped from my garden, the stretch of my stride as I walk across the park, the ridiculousness of my dog hurtling after a ball… And because I am a total fidget and always have been. Exercise might be “corrective”, to increase cardiovascular fitness, because it’s part of someone’s self-concept, to gain confidence for everyday activities, to beat a record or as part of being a good role model. Whatever the reason, tapping into that is more important than the form of the exercise.
  4. Without some carryover into daily life (unless the exercise is intrinsically pleasurable), exercise is a waste of time. So if you’re not enjoying the 3 sets of 10 you’ve been given (or you’ve prescribed to someone), think about how it might translate into everyday life. It might be time to change the narrative about movement away from repetitive, boring exercises “for the good of your heart/diabetes/back” and towards whatever larger, values-based orientation switches the “on” switch for this person. And if you’re the person – find some movement options that you like. Exercise snacks through the day. Jiggles to the music (boogie down). Gardening. Swimming. Flying a kite. Don’t be limited by what is the current fashion for lycra and sweaty people lifting heavy things with that loud music pumping in the background.

Boutevillain, L., Dupeyron, A., Rouch, C., Richard, E., & Coudeyre, E. (2017). Facilitators and barriers to physical activity in people with chronic low back pain: A qualitative study. PLoS One, 12(7), e0179826. doi: 10.1371/journal.pone.0179826

Edward M. Winter & Neil Fowler (2009) Exercise defined and quantified
according to the Système International d’Unités, Journal of Sports Sciences, 27:5, 447-460, DOI: 10.1080/02640410802658461

Geneen, L. J., Moore, R. A., Clarke, C., Martin, D., Colvin, L. A., & Smith, B. H. (2017). Physical activity and exercise for chronic pain in adults: an overview of Cochrane Reviews. Cochrane Database Syst Rev, 4, CD011279. doi: 10.1002/14651858.CD011279.pub3

Karlsson, L., Gerdle, B., Takala, E. P., Andersson, G., & Larsson, B. (2018). Experiences and attitudes about physical activity and exercise in patients with chronic pain: a qualitative interview study. J Pain Res, 11, 133-144. doi: 10.2147/JPR.S149826

Pain may not be what a person fears most


We all have typical ways of going about our daily routines and solving problems. Mostly these work – until we encounter a situation where they don’t. If we’re flexible enough, we’ll figure out a way to change what we do in that instance, and this will become another strategy to draw on, and might even become another habit that works – until it doesn’t.

In pain rehabilitation, there are certain patterns of activity that have received a lot of research attention. Activity avoidance is one of them, while task persistence is given rather less air time (though it’s emerging as an intriguing area to study (Hasenbring, Andrews & Ebenbichler, 2020)). But perhaps what we’ve looked into less are aspects of adjusting to life with pain that raise uncomfortable thoughts and feelings. These in turn make it more difficult for a person to change how they go about daily life.

Some examples I’ve heard from people I’ve worked with:

  • I need to keep pushing through the day because I’m the boss, and a hands-on manager. If I stop being hands-on, there’s nobody to pick up the slack. Things won’t get done.
  • I’m a mum, and I can’t let my children go off to school without them having had breakfast, and making their lunches, and there’s all the parent-teacher events. I can’t just stop.
  • When I left the lawn half-done, my partner jumped in and did it for me, then got really angry with me and I’m not doing that again!
  • I was a professional athlete. Going to the gym is horrible. I’m a failure – I’m lifting these tiny weights and I used to lift massive ones.
  • I’m going back to work on this graded programme, but I can’t fit my gym programme in, and that’s the only way I’m going to fix my core strength.

These situations are pretty common. The clash between “pain management” and the reality of daily life. Daily life is messy, and there are social factors at play, there’s the unpredictable, the real fear of criticism or loss of a job or someone not taking up the slack while the person makes changes in how he or she does life. It’s far easier to prescribe exercises in a controlled place, to track progress by weights, repetitions and cardiovascular fitness or range of movement.

Doing self management, things like pacing or setting time aside for movement, or spending time in meditation or asking someone to help: these are easy in the short-term, right? But not quite as easy if you think of these things needing to happen for life. In fact, some people with pain begin to feel like this new life isn’t really a life at all! Where’s the spontaneity?

When we begin drawing on Acceptance and Commitment Therapy (ACT) a common error is thinking the “acceptance” part is only about accepting pain, and stopping treatment, ie let’s focus on being willing to experience pain in the pursuit of what’s important. And there’s good evidence supporting the process of doing valued activities as one of the key processes in ACT, as well as being a key outcome (Vowles, Sowden, Hickman & Ashworth, 2019). All the occupational therapists say “preach it!” because, of course, this is what occupational therapy as a profession is based on!

So what else needs to be the focus if we’re using ACT in persistent pain management? As you can see from the client examples I’ve given, there are more effects from pain and self-management strategies than just being willing to experience the ouch. People hold fused beliefs about what kind of a person they are: the reliable worker; the dutiful parent; the responsible boss; the super-athlete; the compliant patient. The strategies people use to cope with persistent pain may impinge on ideas a person holds about themselves.

Furthermore, things clinicians tell people – like “your exercises will reduce your pain”, or “you must learn to fire this muscle to help stabilise”, or “meditation needs to be done this way” – can also become fused ideas. A lot like wearing a splint for years “because the therapist said I must”, or using a particular chair “because the therapist said it was the best for me.”

Any time we begin introducing new ways of doing things, we’re likely to encounter people who will find it hard to see why our perfectly reasonable solution won’t fit them in their circumstances. Consequently we can either try hard to persuade the person to do it (creating pliance), or we can decide the person isn’t cooperative and give up. I think there’s a third way: using ACT we can examine the usefulness or workability of the approach preferred by the person, and we can do the same for the new approach. By looking at the good and not-so-good in each option, we can also begin to explore the fused thoughts and emotions, experiential avoidance (what is it the person is unwilling to experience?), values, sense of self (is it me, or a story about me?) – indeed, all the ACT processes are likely to come into play.

What we need to do then will depend on your clinical orientation and the person. If the person judges that what they’re currently doing is working for them – our job is done. We can “leave the door open” for them by indicating that there are alternative strategies the person might want to experiment with in the future, but pushing against a person’s own belief that they’re doing fine just isn’t aligned with ACT.

If the person agrees that no, their current approach isn’t working – then we can begin exploring what’s going on. Occupational therapists might begin with daily activities, perhaps identifying what’s important about them, and then experimenting with (or playing with!) different ways of doing them. As an occupational therapist, I’m likely to want to understand is showing up for the person, maybe draw on other important values to help them to begin to use a coping strategy. The cool thing about ACT is that while committed action must be 100% we can adjust the demands of that action to the level of confidence a person has.

For example, if someone really has strongly fused ideas that “everything needs to be done for the children before they go to school”, we might begin by laying out the children’s lunches but asking the children to put them into their bags. Two things might be going on in this case: one might be about loosening the fused idea that “good mothers do everything for their children” while simultaneously helping the person develop skills to communicate effectively with their children – allowing the children to experience what happens if they forget! (Kids have ways of finding food, believe me)

We could be building on the mum’s value of raising independent children, and drawing on her skills of mindfulness and being in the present moment. We’d need to check in with her willingness to do this: is she 100% willing to let her kids go to school without physically putting their lunches into their bags? If she’s not, we might try making the task a little less challenging. This might look like allowing the children not to brush their hair before going to school, or putting the lunches beside the bags but not inside them. Whatever we do we’re gently allowing her to feel the shiver of anxiety that she hasn’t “done everything for the children” while also using another value “I’m raising independent children” to help her follow through.

In terms of where this example might go, if one of the fused thoughts is that “I feel guilty if I don’t do everything for my kids”, this is likely playing out in other parts of this person’s life. By helping her be willing to experience that anxiety in the pursuit of supporting her children to become independent, she’s developing more space between her thoughts and what she decides to do with them. She’s rehearsing a process where she draws on strengths (values, mindfulness, cognitive defusion) to help her commit to doing something that’s not easy. And doing this in one part of her life begins to open the possibilities for doing this in other parts of her life.

Pain rehabilitation and management is often not so much about dealing with the pain and effects of pain on life, but on life and how we live it. Life is more than whether we’re pain-free, fit or happy, it’s about moving onward in the direction of what’s important to us.

Hasenbring, M. I., Andrews, N. E., & Ebenbichler, G. (2020). Overactivity in Chronic Pain, the Role of Pain-related Endurance and Neuromuscular Activity: An Interdisciplinary, Narrative Review. The Clinical Journal of Pain, 36(3), 162-171.

Vowles, K. E., Sowden, G., Hickman, J., & Ashworth, J. (2019). An analysis of within-treatment change trajectories in valued activity in relation to treatment outcomes following interdisciplinary Acceptance and Commitment Therapy for adults with chronic pain. Behav Res Ther, 115, 46-54. doi: 10.1016/j.brat.2018.10.012

That elephant in the room thing


This weekend I was incredibly fortunate to speak at Le Pub Scientifique (the next one is the super intelligent Tasha Stanton!) about one part of our pain conversation that’s absent: how do we have a conversation about when pain persists and doesn’t respond to any treatments?

I still don’t have any research to show how we might broach this topic in a way that respects the person with pain, acknowledges just how poorly our treatments do, and provides a framework for us to collaborate. It’s like this big bogey sitting in our clinics that we pretend isn’t there.

Why do we need to have this conversation?

Well, one reason is that our treatments are pretty poor and by ignoring this reality we’re sitting there with our hands over our ears going “lalalalala” as if by NOT talking about it, it doesn’t happen.

Another is that people living with pain are put through the most awful process of being offered something (hope!), waiting to get that something (waiting, waiting, waiting…life on hold…), getting it (ooh! exciting!), waiting for it to work (waiting, waiting, waiting…life on hold…), then finding it doesn’t help (despair!). Rinse and repeat. The time spent waiting alone is such an incredible waste.

As a result of us not being brave enough to talk about it, people with pain are often thought of as The Problem. They get blamed for not responding. Blamed by family, friends, other health professionals and funding agencies, insurers and case managers, and worst of all: their own minds.

In 2007 I hit my head and sustained a concussion. For 18 months I wasn’t working full time because I’d need to come home and sleep for at least an hour. Even though I knew that my symptoms were real, and that it can take time to recover from concussion, I spent hours worrying that I was “exaggerating”, “taking things too hard”, “not working hard enough”, “not motivated enough.” Believe me, these thoughts do not help anyone, and they delayed my recovery by pushing me towards a depressive episode.

Imagine if you’re a person with pain that doesn’t respond and instead of being given consistent messages about it as I was with my concussion, you’re being told “Treatment X might be a good option”, or “Have you tried Y?” or “Maybe another investigation might help us sort it out?”

How might that erode your sense of self, your confidence in your own experience?

Now I’m not suggesting we say to people “Guess what, your pain is going to go on forever” – that would be horrible, uncaring and unfeeling.

This isn’t the same as pretending that pain isn’t there, gritting teeth and “just getting on with it”. This isn’t about being resigned to a life of suffering.

What I am suggesting is that we help people to become less afraid of their pain, and to begin to start adding life into their life. That by taking pain into account we can begin to build patterns of activity that move us towards what we value – and I doubt that many of us value waiting for the next healthcare appointment. It also doesn’t mean that people can’t at the same time seek pain reduction approaches – I’ve certainly tried a bunch over the years, sadly none of them have changed my pain one iota.

When a person seeks help for their pain, underlying that request is typically something much more pragmatic. It’s about how much pain is interfering with important things the person wants to be able to do. It’s also about what the pain might signify – is it cancer? does it mean I need to change my job? does it mean I’m succumbing to old age or the legacy of being reckless as a young person? Clinicians often forget to ask “if pain was less of a problem for you, what would you be doing?” Clinicians also forget to ask what the person’s main concern is about their pain.

Addressing these concerns will, I think, help us move the conversation away from which set of exercises is better, which gadget might be new and groovy, which dominant voice should be listened to, and whether someone is “right” or “wrong” about an approach to helping people.

So perhaps, as we begin to recognise that our treatments are not very effective (despite the occasional win! Just like the gambler’s occasional win), we can work towards helping people with pain move towards what matters in their lives – with pain as a companion in the back seat, rather than taking over the steering wheel. And perhaps, somewhere along the way, there will be a place to stop to offload this passenger, but knowing that we’ll always carry the memories and thoughts of having had it as part of our lives. Pain has taught me so much! I am stronger than I think, I am good at finding wiggle room, and I am more compassionate towards others who are newer to the journey.

Le Pub Home Brew


Now I’m the kinda woman who enjoys a bevvie or two – and I do love to talk! Combine them both with my favourite topic of pain, and you end up with Le Pub Home brew…and I’m speaking THIS SATURDAY!!

My topic? Let’s stop focusing on pain, because we have a few elephants in the room we need to discuss.

Come and join me as I poke and prod at assumptions made about why people come asking for help with their pain, why clinicians often focus on the wrong thing, why we need to listen to the messages buried beneath the “take my pain away” call – and why the skills clinicians have HAD to draw on during lockdown might just well be the Most Important Skills they have (psssst! Call them “soft skills” at your peril!).

I might wander into some philosophy, some sociology, and probably I’ll tread on some toes and push my own agenda to have more people recognise what occupational therapists already know about context, meaning, values and being flexible.

’nuff said: click on the link below and get in on the conversation (BYO home brew)

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.