crossing paths

Pacing – Activity management concepts (a longer than usual post)


In the literature recently there’s been a flurry of activity around pacing as a concept. When I first wrote about pacing I couldn’t find very much that had been published, and I ended up writing something that made sense to me at the time. Today I hope to add to that by summarising a few of these recent papers, and discussing some findings from my PhD research.

Firstly, what is pacing?

Pacing isn’t well-defined. In one of a few recent papers on pacing, Nielson, Jensen, Karsdorp, & Vlaeyen (2013) suggest that pacing should be defined as “…the regulation of activity level and/or rate in the service of an adaptive goal or goals” (p. 465).  Gill & Brown (2009) point out that because pacing is poorly defined, and despite the term being used widely and most especially in the mid 20th century (and related to the “3 P’s” of planning, positioning and pacing used for rheumatoid arthritis), there are a diverse range of articles mentioning pacing, but no consensus as to what it might include.

Jamieson-Lega, Berry and Brown (2013) scanned the literature and sought feedback from stakeholders from a range of disciplines, and developed a concept map for the term. Concept mapping involves identifying the use of the concept in the literature, defining the attributes of the concept and developing a model case (a “pure” example), and both borderline and contrary cases (incorporating none or only some of the concepts). Antecedent and consequent outcomes associated with the concept of pacing were also defined, and empirical referents, or phenomena that show how the concept has occurred.

Key criteria for pacing, drawn from the literature by Jamieson-Lega, Berry & Brown (2013) show that pacing has five consistent attributes:

  1. Action – pacing involves intentional behaviour
  2. Time – pacing occurs over time and involves attending to time
  3. Balance – weighting activity and rest in accordance with intended outcomes
  4. Learning – pacing needs to be learned, it requires an effort
  5. Self-management – the process of using pacing involves independently integrating the practice once the skill has been developed.

The definition proposed by this group is therefore slightly different from Neilson and colleagues:

“Pacing is an active self-management strategy whereby individuals develop self-efficacy through learning to balance time spent on activity and rest for the purpose of achieving increased function” (p. 209).

When would someone need to develop this skill and what might happen if they use it successfully?

Janieson-Lega, Berry and Brown (2013) suggest that there are prerequisites for the need to develop pacing.  These involve activity disruption secondary to pain, imbalance between activity and rest, patient’s lack of pain self-management knowledge and having pain. When an individual successfully uses pacing, the expected outcomes are pain management, self-direction and improved self-efficacy, avoidance of pain exacerbation, balanced activity/rest, increased functional ability, and increased knowledge and skills in activity planning and prioritising (p. 210).

Therefore, if a person with chronic pain isn’t able to engage in what they want to do, finds it difficult to have sufficient rest or activity, lacks self-management knowledge and has pain, they could expect that pacing would enable them to manage their pain more effectively, become self-directed and more confident, minimise flare-ups, have a balance between activity and rest, be able to do more, and know more about what is important and how to achieve what is valued.

What does the literature suggest?

Despite the problems with defining pacing, and consequently having no real measure of pacing, there have been several studies examining the relationship between pacing and other important variables. The first study I saw of pacing was McCracken and Samuel’s 2007 paper looking at the relationship between avoidance, pacing and other activity patterns.  Surprisingly, these authors found that pacing was associated with both activity avoidance and disability. From this study, the authors suggested that avoidance activity may resemble healthy coping (and from this I deduced that pacing is considered “healthy”).

Murphy, Smith & Alexander (2008) conducted a small pilot study of activity pacing in women with lower limb osteoarthritis. This study used actigraphy to monitor movements, and correlated this data with self-reported pain and fatigue. This study found that “high pacers” had more severe, escalating symptoms, and activity pacing was related to lower physical activity. Karsdorp & Vlaeyen (2009) found that activity avoidance but not activity pacing was associated with disability, and challenged the notion that pacing as an intervention is essential in pain management.  van Huet, Innes, & Whiteford (2009) on the other hand, found that “graduates” from a pain  management programme continued to use pacing strategies years after completing a programme, but made no comments as to the effect on outcomes although they did comment that “the application of pacing tended to be individualised, with the use of self-selected time increments and novel strategies providing structure to limit over-activity” (p. 2036).

Andrews, Strong & Meredith (2012) completed a systematic review of activity pacing in relation to avoidance, endurance and functioning.  This study found that pacing was linked to better psychological functioning but more pain and disability, but couldn’t comment on the direction of this relationship.

What about people with chronic pain, what do they think?

People with chronic pain indicate that they use pacing in studies within the qualitative literature. The problem is that these describes rarely include definitions of pacing.  van Huet, Innes and Whiteford’s study from 2009 provides quotes from graduates of pain management programmes who describe pacing as “doing things in bursts of 20 minutes and half an hour, then changing what I’m doing, then go back”; “you don’t have to do the whole lawn at once”.

From my study of people who cope well with pain, participants were selective about their use of pacing. Many of them indicated that pacing was not used when they had an important goal to achieve, while using “chunking” or breaking activities into smaller units was used from time to time – what was interesting is that pain intensity wasn’t used as an indicator for when to stop. Patients I’ve worked with in the past have described using pain intensity or fatigue as the indicator – they always stopped before their pain or fatigue “got out of hand”.

Where does this leave us?

My take in pacing as it currently stands is that there is a great deal of confusion on the matter. My personal opinion, and from both the literature and my own experience with my fibromyalgia, is that pacing can be useful in several ways – but can also be unhelpful.

Here’s how I think it can be useful:

  • When beginning to work towards an increased activity level – by setting a baseline level of activity, then titrating this level up by time or “chunk” increments rather than using pain or fatigue as a guide
  • When individuals are finding it hard to maintain activity levels over a day/week/month, pacing using time or quota as the guide can help extend activity levels over a longer period
  • When people are not sure of their symptoms and find it difficult to know what triggers an exacerbation, usually during the “making sense of pain” phase of adjusting to chronic pain
  • When engaging in routine activities that don’t need to be carried out all at once, such as mowing the lawn, doing the laundry, vacuuming the house. Things that need to be done, but might be carried out over a longer period of time than a single session. I used this approach to write my PhD using Pomodoro Technique.  I also use it when doing housework.

When might it be unhelpful?

  • When individuals continue to use pain as a guide to stopping activity, and “stop before it flares up”
  • When individuals monitor their pain intensity and seek to avoid fluctuations in pain
  • When working to a quota doesn’t help them reach goals and isn’t used to reduce distress, disability and isn’t progressed. A good example of this is the “5 minute break” I saw instituted in a data entry workplace. It was a computerised system that stopped the keyboard for five minutes with no over-ride. The “5 minute break” was obligatory for everyone every 45 minutes, there was no rationale for using it, it interrupted flow, and people HATED it. I’ve seen similar things used when people are returning to work – “work for 15 minutes then stop for 5”, maintained for weeks without being reviewed and without establishing effect.

Next steps?

Having arrived at a reasonable definition, I think it’s time to see how people use pacing in daily life, within the context of the ebb and flow of normal activities. I’d like to see an ecological momentary assessment approach to see what triggers use of pacing, how well do people return to their activities, how long is a break, and whether there is an impact on both disability and distress.

 

Andrews, Nicole E., Strong, Jenny, & Meredith, Pamela J. (2012). Activity Pacing, Avoidance, Endurance, and Associations With Patient Functioning in Chronic Pain: A Systematic Review and Meta-Analysis. Archives of Physical Medicine and Rehabilitation, 93(11), 2109-2121.e2107.

Gill, Joanna R., & Brown, Cary A. (2009). A structured review of the evidence for pacing as a chronic pain intervention. European Journal of Pain, 13(2), 214-216. doi: 10.1016/j.ejpain.2008.03.011

Jamieson-Lega, K., Berry, R., & Brown, C. A. (2013). Pacing: a concept analysis of the chronic pain intervention. Pain Research and Management, 18(4), 207-213.

McCracken, Lance, & Samuel, Victoria. (2007). The role of avoidance, pacing, and other activity patterns in chronic pain. Pain, 130(1), 119 – 125.

Murphy, S. L., Smith, D. M., & Alexander, N. B. (2008). Measuring activity pacing in women with lower-extremity osteoarthritis: a pilot study. American Journal of Occupational Therapy, 62(3), 329-334.

Nielson, Warren R. PhD, Jensen, Mark P. PhD, Karsdorp, Petra A. PhD, & Vlaeyen, Johannes W. S. PhD. (2013). Activity Pacing in Chronic Pain: Concepts, Evidence, and Future Directions. Clinical Journal of Pain, 29(5), 461-468.

van Huet, Helen, Innes, Ev, & Whiteford, Gail. (2009). Living and doing with chronic pain: Narratives of pain program participants. Disability and Rehabilitation: An International, Multidisciplinary Journal, 31(24), 2031-2040. doi: 10.3109/09638280902887784

29 comments

  1. Bronnie, thank you for an excellent summary of the current literature on pacing in relation to coping with being in pain. As we know, there is considerable clinical overlap of symptom clusters that typify Fibromyalgia (FM) and Chronic Fatigue Syndrome (CFS). This suggests that there may be common pathophysiological mechanisms which, in turn, could provide a scientific rationale for recommending that those with these conditions cautiously undertake pacing and graded exercise programmes.

    We know that in those with CFS there is blunting of the increase in muscle blood flow with both static and dynamic exercise, decreased blood flow to working muscles during and following exercise, increased fatigue and muscle pain following too vigorous exercise, and a lengthy period of time (days, weeks or months) for relapses to settle. [Nijs et al. 2008]

    Recent experimental research into the biology of muscle fatigue is helping us to explain the clinical phenomena of muscle fatigue and pain after exercise. In one study, 25 minutes of moderate exercise resulted in large and rapid increases in the expression of genes in white blood cells of CFS patients but not in control subjects. The particular genes expressed were those that detect increases in products produced by exercising muscles, as well as those that mediate sympathetic nervous system responses and some that are important in functioning of the immune system. [Light et al., 2009]

    This accords with the idea that CFS is “a complex construct of symptoms that emerge from alteration and/or dysfunction in the nervous, endocrine, and immune systems.” [Klimas et al. 2012] FM appears to be a similar construct. [Lyon et al. 2011]

    Another study of interest posed the question: “can physiological concentrations of metabolite combinations (protons, lactate and ATP) evoke sensations of fatigue when injected into skeletal muscle?” Indeed, low concentrations of these metabolites evoked sensations related to fatigue, whereas higher concentrations evoked pain. It appears that there are two type of sensory nerves involved, one signaling fatigue and the other signaling pain and heat. [Kelly et al, 2014]

    These findings point to a disturbance in the regulation of genes that are expressed when human beings undertake exercise. In those with CFS (and probably also those with FM) it takes very little in the way of exercise for them to experience the same level of fatigue and muscle pain as can be experienced by trained athletes performing supra-maximal exercise.

    I hope that these and other findings from biological research can soon be used to inform our recommendations to patients on pacing and exercise.

    References:

    Kelly A et al. Exogenously applied muscle metabolites synergistically evoke sensations of muscle fatigue and pain in human subjects. Exp Physio 2014; 368-380.

    Klimas N et al. Biomarkers for chronic fatigue. Brain, Behav Immun 2012; 26: 1202-1210.

    Light AR et al. Moderate exercise increases expression for sensory, adrenergic, and immune genes in chronic fatigue syndrome patients but not in normal subjects. J Pain 2009; 10: 1099-1112.

    Lyon P et al. An evolutionary stress response hypothesis for chronic widespread pain (fibromyalgia syndrome). Pain Med 2011; 12: 1167-1178.

    Nijs J et al. Chronic fatigue syndrome: an approach combining self-management with graded exercise to avoid exacerbations. J Rehabil Med 2008; 40: 241-247.

    1. Thanks for the links to those references John. My experience of exercise is that when I engage in activity that is “out of the ordinary” for me, I will experience DOMS and fatigue, but if I gradually progress towards that same level, doing it over weeks or so, I don’t experience it. The paper by Daenen, Varkey, Kellman & Nijs (2014) summarises the state of play with respect to exercise – and overall, it seems that exercise is a good thing to do, but the best way of going about exercising will depend on the type of pain experienced. I wrote about that a few months ago.
      Of course, with a more functional hat on, I’d like to see “exercise” considered equivalent to “activity” or “occupational engagement” because this invokes lots of those wonderful contextual elements including motivation, emotion, cognition and so on – and it’s more directly relevant to daily life and reducing disability.

      If FM and CFS are part of a constellation of “central sensitisation disorders” (as Yunus suggested), it doesn’t surprise me at all that ANY sensory input, irrespective of the modality, will generate a response – and a response to threat in an organism often produces an inflammatory response, as well as a “stress” response. Hence I suggest to people that they consider their condition to be something like the canary in the mine, or an early warning system to indicate that, for them, their lifestyle could do with a little adjustment, or they need to build up or down to the level of “stress” they’re exposed to.

      The question for all of us is whether there is “one way” to go about activity management in daily life. That’s what an EMA study would begin to show, preferably using single subject case design. Mind you, I’d like to see that for all of the current coping strategies we recommend!

      Daenen, L., Varkey, E., Kellmann, M., & Nijs, J. (2014). Exercise, not to Exercise or how to Exercise in Patients with Chronic Pain? Applying Science to Practice The Clinical Journal of Pain DOI: 10.1097/AJP.0000000000000099

  2. Bronnie, the other reason for my longish post is that this research goes a long way to validating the experiences of those patients who have been awarded these labels. By the way, in my opinion Yunus is guilty of the logical error known as circular reasoning. See if you can spot it.

    1. Yep, I know what you’re talking about. I’m not entirely of the same opinion, but haven’t had time to work through a reasonable analysis (yet)! Yes, I think people who get FM and CFS and MCS etc can get badly labeled because they can “perform” at the time of a test (eg FCE), but then experience delayed onset pain that lasts for a long time, which means they can’t maintain activity at the levels others believe they “should” on the basis of their one-time performance.
      There’ll be more on pacing over time as it’s becoming a topic of interest – I can’t think why it hasn’t been before given how well researched “disability” as a concept has been. Surely activity engagement/activity modulation is one of those pertinent discussions the chronic pain community needs to have!

  3. I worry that ‘pacing’ is losing a lot of it’s value as it is being researched, medicalised, and tied in to other areas of ‘expertise’.

    I think that the value of the ‘pacing’ label stems from it’s ability to be used to say “Piss off, I’m doing what I want” in a way that sounds like “Thank you for your concern but I’m carefully following my doctors orders in the management of my condition”.

    There is a danger that patients valuing ‘pacing’ can lead to medical staff using it as another way of asserting authority over people, and telling them how to live their lives based on only tenuous evidence, but so long as the aim of ‘pacing’ remains limited to having people lead more comfortable lives there should be less of motivation to do this than there is with other approaches.

    As part of the promotion of the biopsychosocial model of disability there has been an attempt to re-conceptualise the sick role, and include additional responsibilities:

    “Obligations:

    -Share responsibility for management of the health condition and rehabilitation
    -Recognize that symptoms and feeling unwell do not necessarily mean incapacity for
    work
    -Recognize that the sick role is temporary, in the expectation of recovery
    -Be motivated and cooperate with rehabilitation
    -Return to work when reasonably possible (even if there are still some symptoms).”

    http://www.craigliebenson.com/wp-content/uploads/2010/08/Models-final-proofs2.pdf

    Given that the expectation of recovery is too often founded upon exaggerated claims about the value of rehabilitation, ‘pacing’ can be used as a way of ticking the boxes for the obligations of the sick without creating additional chores and burdens.

    When some are now attempting to medicalise the biological, psychological and social aspects of people’s lives, particularly when the cause of their ill health is poorly understood, it is not surprising that many patients will try to find some shelter in approaches like ‘pacing’.

    1. That’s an interesting take on the concept of pacing – but I don’t think I can completely agree. One of the things I’ve noticed while helping people develop their pacing skills is that many people loathe “pacing” – because it represents “leaving a job half-finished”. And I’ve found that people have a great deal of trouble telling other people that they need to pace, because they feel judged and afraid they will be seen as shirking if they do so.
      Personally I don’t think medical staff discuss pacing with people very often, mainly I think it’s occupational therapists, physiotherapists, psychologists and others who go through pacing. Yes, I’ve seen these clinicians attempting to push a person into using pacing, but in my experience this generally fails once the individual is back on their own. After all, if a person hasn’t got some benefit from doing it, they’re simply not going to carry on!

      I think your depiction of the biopsychosocial model/framework as reconceptualising the sick role is not accurate. The sick role and our concepts of illness are social constructs. When we think about illness and sick roles, societal views shape what is OK and not OK within those roles. I don’t think the notion of responsibility arises from an artificial attempt to add something in that isn’t present already – my reading of the literature suggests that it’s when these unwritten rules are violated by people (eg they “look too well”, or “they’re not recovering fast enough”) that the general population becomes frustrated and can’t understand why the person is “breaking the rules”. The biopsychosocial model/framework provides some explanations as to why people are not “following the rules”, something that a biomedical model does not do.

      Do you think that people are “medicalising lives” when the aim is to explain and understand why some people experience greater disability and distress than others, despite reporting the same pain intensity? Or is this an attempt to explain and then help reduce suffering? To my mind, and having met Gordon Waddell, I think the book chapter you’ve linked to emerges from a sincere desire to help improve the lives of people who have often been sidelined, labelled as malingerers, or diagnosed as having mental health problems.

      Pacing is such a nebulous concept and yet has been used for such a long time in pain management, that I think it’s great to see more investigation into what is so poorly understood. And yes, it would be SO good to have the experiences of people with pain brought into the discussion.

      1. “I think your depiction of the biopsychosocial model/framework as reconceptualising the sick role is not accurate. The sick role and our concepts of illness are social constructs. When we think about illness and sick roles, societal views shape what is OK and not OK within those roles. I don’t think the notion of responsibility arises from an artificial attempt to add something in that isn’t present already – my reading of the literature suggests that it’s when these unwritten rules are violated by people (eg they “look too well”, or “they’re not recovering fast enough”) that the general population becomes frustrated and can’t understand why the person is “breaking the rules”. The biopsychosocial model/framework provides some explanations as to why people are not “following the rules”, something that a biomedical model does not do.”

        I’m not sure if you’re familiar with the role the biopsychosocial model has played in the UK’s welfare reforms. Social constructs can be shaped by politicians, the media, businesses and academics – those who do not just passively respond to the instinctive views of the populace. The Aylward and Waddell piece I linked to was being used by Lord Freud in the House of Lords to justify the government’s welfare reforms – if Gordon Waddell is motivated by a sincere desire to help improve the lives of people who have often been sidelined, then he seems to have spectacularly misfired. His co-author is Mansel Aylward, who was the CMO at the Department of Work and Pensions (DWP) when the foundation for these biopsychosocial reforms was laid, and then moved on to the Unum Centre for Psychosocial and Disability Research and ATOS’s review board. The predictable impact of their work has been to save the DWP money by making life worse for those with health problems. Who, with any understanding of the nature of Western societies, could be surprised by this?

        “Do you think that people are “medicalising lives” when…”

        I think that it’s ‘medicalising’ lives when we allow those within a medical system to claim to have expertise about how others should think, behave and be treated. Not all medicalisation is a bad thing – but we should ensure it only occurs when there is good, solid evidence that it will benefit the individual being treated.

        All manner of claims were made about how biopsychosocial welfare reforms would help remove perverse incentives, encourage people to take control of their lives, and empower the sick and disabled… we’ve recently seen figures showing that even fewer people are now moving from disability benefits into work than they were previously. The whole thing just served to encourage people to believe that the sick and disabled had more control over their health than truly seems to be the case, increasing public support for motivating the shirkers with poverty, all while these cutbacks could be presented with a sheen of caring (if belittling) paternalism.

        “One of the things I’ve noticed while helping people develop their pacing skills is that many people loathe “pacing” – because…”

        From my usage of the word ‘pacing’, it should not require people to leave a task half-done if they do not want to. Also, while use of the word ‘pacing’ will not be able to overcome all social stigma or awkwardness, I would be surprised if it made things any worse in this area.

        “Personally I don’t think medical staff discuss pacing with people very often, mainly I think it’s occupational therapists, physiotherapists, psychologists and others who go through pacing.”

        I was including all people who work within our medical systems as being ‘medical staff’.

      2. Yes, social constructs are shaped by all manner of influences including political, financial, and popularist. Researchers cannot determine how politicians use their findings, and it’s short-sighted, IMHO, to denigrate the BPS model and its explanatory usefulness on the basis that politicians have used it to justify certain actions. I’m not familiar with the UK reforms, but I do see the NZ “welfare dependency” bashing that goes on.

        Do you think that people who have disabilities have little control over their lives? And how could they obtain increased control? Is it “control” when a person sees no option apart from receiving welfare? Or is that paternalistic? What is like to feel like there is no hope? What is it like to be labeled an invalid? What is it like to feel obliged to work in unsatisfactory work? To have to explain why you can’t do things the way others do?
        The factors that improve health seem to be more psychosocial than biological, and the social is often socio-economic but turns into a psychological obstacle when people feel they have no alternatives. At least one significant effect of the psychologising of chronic pain is that there is some awareness that it’s possible to increase self efficacy, to improve confidence that by looking at things differently, there are choices. This can’t help people who have fewer options than others because of gender, ethnicity, education, disability, religion and so on, but it gives more options than a biomedical model does, and it’s far fairer.
        Under a biomedical model, if two people have the same impairment or tissue damage, they’re expected to have the same experience irrespective of different prior learning, different social context, different beliefs and attitudes, and different personal resources. If one person has clear tissue damage and another reports pain but there’s no tissue damage evident, the biomedical model has no explanation and needs to fall back on “body” or “mind” explanations, while the BPS at least recognises that it’s a little more complex than that.

        I’ve said many times on this blog that I think we have a biopsychological model rather than a biopsychosocial one. The social is complex, difficult to examine because we’re part of it and our cognitive biases mean we can’t readily see that what seems normal and commonsense because it’s part of our culture is just another example of culture. I think there’s a culture of disability just as much as there is a culture of medicalisation.

        There is good evidence that psychosocial management using a biopsychosocial model helps people. That’s the basis for chronic pain management programmes.
        At least in the way I work with people, programmes like these are intended to give people more choice, more options, develop more confidence, and select from a range of self management coping strategies.
        As I said, researchers can’t dictate how findings are used, and I’m saddened that people are interpreting what’s happening in the UK as because of the BPS model. It’s not – it’s the politicians and policy-makers who are making this situation, not the model. And the model CAN and has been used for so much good, I don’t want to see the baby thrown out with the bathwater.

        As for people trying to determine how others should be treated, how they should feel, and how they should behave, I don’t think pacing as a skill is intended to do this. I don’t think I’m saying that I can determine how another person should think, feel or be treated (except to say that people should be respected – even if I don’t agree with them!). I am saying that I don’t have to agree with people, and that maybe I can give an indication of some of the logical consequences that can occur if particular choices are made (because I’ve seen it again and again, and so have other researchers – who have reported on the experience of 1000’s of people with chronic pain who have given their time to contribute to research). Then it’s up to individuals to decide what action to take. I can only keep a door open so that if/when someone wants help from me, I’m there for them.

        Please don’t call all health professionals “medical”. It really only refers to medically trained people who work within a medical model. Thankfully I don’t – it’s good to have a medical model, but it’s not the model I use.

      3. Eindt, thanks for your insights. As I have said many times before, “biopsychoscocial” was never meant to a scientific model. In our 2008 paper (Pain Medicine and its Models: helping or hindering) we made the point that in practice this so-called model too easily defaulted to “biomedical,” with its inherent dualistic (body/mind) thinking. It disturbs me to hear that UK health policy makers and politicians have further distorted what was originally intended by Engel to provide a useful framework for discussion or aide memoire between patient and clinician.

      4. Too true John. How do you think medical educators can help new doctors refrain from dualist thinking? And how do we support them to remain aware of the various subtle influences on the illness experience and illness behaviour people do?

      5. Bronnie, one good way to begin to tackle this problem might be to show (with her permission) Soula Mantalvanos’ short film – The Hurting Strings – to medical students well before they complete their course.

      6. Yes, I’m going to ask her if I can share it with my students. I see 5th year medical students who are just about to get out into the wards, so it’s a good time for them to become aware of the complexities of the problems chronic pain can have on people.

      7. @adiemusfree:

        “Researchers cannot determine how politicians use their findings, and it’s short-sighted, IMHO, to denigrate the BPS model and its explanatory usefulness on the basis that politicians have used it to justify certain actions”

        Surely if researchers are claiming to use their biopsychosocial expertise to help patients, and yet the most significant impact of their work is to cause social harm, that’s a fair reason to be critical of the biopsychosocial approach.

        “but I do see the NZ “welfare dependency” bashing that goes on.”

        Aylward has recently been on tour with you, and I’ve noticed a few NZ disability campaigners attacking him and his work. The UK’s BPS reforms have served as a warning to disability campaigners in NZ, and they seem prepared for a fight.

        “Do you think that people who have disabilities have little control over their lives?”

        Measured how? Compared to what? Which people and which disabilities? I think that people tend to be better placed to judge their own levels of control than the people who are placed in positions of authority over them, and that there are strong incentives for others to claim that they have more control over their health than they truly do.

        The recent BPS reforms have seen disability assessors to use the BPS model to claim things like an individual’s disability was: “60% psychosocial: dependence on family members, depression and pain”. That judgement meant that the individual lost a significant portion of their income: http://www.benefitsandwork.co.uk/news/186-new-genuinely-disabled-test-to-cut-dla-a-aa-awards

        I certainly think that it is very dangerous to allow any attempt at pragmatic psychosocial management to affect claims about control. While some might see it as inspiring and empowering to make ‘positive’ claims about control, there are often important side-effects.

        “The factors that improve health seem to be more psychosocial than biological”

        I’m not really sure what you mean there, but by my reading, that seems very unlikely to be true. The way people fill in questionnaires can be easily affected by psychosocial manipulation and management, but more objective and reliable measures of health seem to respond less readily. Interventions like vaccines have had a pretty large effect upon people’s health.

        “it gives more options than a biomedical model does, and it’s far fairer.”

        What we have seen in the UK would seem to indicate that this is not the case.

        “At least in the way I work with people, programmes like these are intended to give people more choice, more options, develop more confidence, and select from a range of self management coping strategies.”

        Those are exactly the sort of claims which have been used to justify giving people with health problems in the UK less power and less money. Things like ‘confidence’, ‘options’, ‘self-efficacy’, etc can sound nice, but really power and money is where it’s at, and these other words can be, and have been, used as a smokescreen to cover harming people where it matters most.

        “Under a biomedical model, if two people have the same impairment or tissue damage, they’re expected to have the same experience irrespective of different prior learning, different social context, different beliefs and attitudes, and different personal resources. If one person has clear tissue damage and another reports pain but there’s no tissue damage evident, the biomedical model has no explanation and needs to fall back on “body” or “mind” explanations, while the BPS at least recognises that it’s a little more complex than that.”

        I disagree with that, and think that you unfairly do down the biomedical model by overlooking the importance of an honest acknowledgement of our ignorance. We’re a long way from have a sufficient biomedical understanding of the human body for any competent doctor to be able to proclaim that a patient’s pain requires tissue damage, or a similar easily identifiable cause. Also, the biomedical model does not assert that our medical knowledge allows doctors to judge the totality of an individual’s personal capacity without regard for their own history, social resources, etc. A rejection of the biopsychosocial model does not require people to pretend that the ‘psychosocial’ components of people’s lives are not important, it just requires a recognition that our understanding of these areas is so poor that allowing those working within academia and our health systems to claim expertise and authority in these areas will often do more harm than good. Perhaps this would not be the case were our societies, health systems and academics less prone to manipulation by the interests of those with power and money, but a defence of the biopsychosocial model cannot ignore the real societies in which it must operate.

        Also, the social model of disability is what disability campaigners had previously been able to successfully use to argue for improvements in the way the UK state treats disability. It was this, not the biomedical model, that underpinned the introduction of the Disability Living Allowance, and this which the BPS model was used to undermine.

        There are lots of pieces from disability campaigners about the problems with the BPS approach, this one from someone at Leeds uni looks at how those two models are used:

        http://disability-studies.leeds.ac.uk/files/library/A-Tale-of-two-Models-Leeds1.pdf

        “There is good evidence that psychosocial management using a biopsychosocial model helps people.”

        There’s good evidence that there’s a lot of spin hyping the results of biopsychosocial management in nonblinded trials that use subjective self-report questionnaires as outcome measures. We’ve seen interventions like homeopathy provide similar positive results previously, and I think that there is reason for caution here. While that’s not to say that no people will be helped by a biopsychosocial approach, the serious harm and quackery that has also occurred cannot be ignored.

        “As I said, researchers can’t dictate how findings are used, and I’m saddened that people are interpreting what’s happening in the UK as because of the BPS model. It’s not – it’s the politicians and policy-makers who are making this situation, not the model.”

        The Minister for Welfare reform said that their approach is founded on the biopsychosocial model. The only medical research ever funded by the DWP has been into biopsychosocial rehabilitation (the results of which were spun by researchers keen to promote the biopsychosocial model). What makes you think that the BPS model is any less responsible for this than for the things which you think are good and have come from the BPS model? The BPS model is used as it is used, and I do not think that you have any more claim to it than Lord Freud.

        “I don’t think pacing as a skill is intended to do this.”

        Neither do I, and I didn’t mean to imply otherwise. (Although I it can be used in that way, like all other possible interventions.)

        “Please don’t call all health professionals “medical”.”

        Okay. I think that the concerns around ‘medicalisation’ apply just as readily to the work of OTs, physiotherapists, etc, but am lacking a more all encompassing term for this, so count them as ‘medical’ in that sense.

        Here are a couple of images from last year’s rally against the welfare reforms, Atos, etc:

        The flowers are intended to represent people who killed themselves because of the stress and poverty resulting from the new system, or those who had died soon after being classed as not deserving disability benefits. http://occupylondon.org.uk/scrap-atos-10000-cuts-and-counting/ I’m not sure how reliably one can tie these sorts of deaths to the biopsychosocal reforms implemented, but there certainly have been a number of deaths and suicides reported that do seem to be very directly linked.

        I sometimes worry that some of those promoting the biopsychosocial model do not spend enough time thinking about its real social impact.

        @ John Quintner: Thanks for mentioning your paper. To me, it seems that the BPS model, as Engel seemed to view it, didn’t have much impact upon how patients were treated and that it was only once it had been distorted (developed?) that it gained real importance. The general view amongst disability activists seems to be that Engel was well meaning but naïve. I think that I tend to be rather more critical, but I’d recently read something from a campaigner about the distortion of the BPS model that’s available here: https://dl.dropboxusercontent.com/u/32109159/Illness%20as%20Deviance.pdf

        I think that discussions around dualism often require a lot of work, as it’s easy for people to use words in slightly different ways. I also think it can be something of a distraction, and has been used by some other biopsychosocial proponents to try to dismiss the concerns of those patients and campaigners who simply have not considered these issues (not to imply that I think you are doing this).

      8. Thank you for taking the time to respond to my comments. I’m a bit daunted by the volume of your reply, and in view of my own limitations as an individual and a person with chronic pain, I’m not going to respond to what you’ve said. I’m not a political beast, if I were I’d have been waving the flag for greater attention to chronic pain services in New Zealand far more effectively than I have!
        I don’t think that using the BPS has resulted in more harm than good. I worked in the days when people with chronic pain had multiple surgeries for chronic back pain, and then had their situation reviewed by biomedical clinicians without any understanding of chronic pain from a BPS perspective who argued that they were mentally unwell and that this was the “cause” of their pain. That’s a label that was incorrect, unhelpful and allowed clinicians to believe that they’d been quite correct to pursue the never-ending search for nociception while enabling them to pass off poor responses as “not their problem”. Using a BPS perspective allows for greater explanatory breadth in a clinical situation. I can’t respond to the use of it in policy, it’s not my area of expertise – but again, why write off a useful model simply because some people misuse it, and more to the point, what do we replace it with?

        I don’t agree there’s spin associated with self managing chronic pain – yes, outcomes are not wonderful, but they’re at least as useful as medical, surgical or pharmalogical approachs, and they produce less harm. Cochrane and other systematic reviews show that against control interventions, they’re better, but against other active interventions they have small to moderate effects. But as you know, some individuals respond very well, while others respond little, and the majority experience the small positive shift that grouped data indicates. My argument for using self management is that it enables people to be independent from ongoing contact with a health provider if that’s what the person wants.

        I totally agree that we don’t know enough about how the human body works to know all there is to know about pain. Psychological concepts are, I believe, underpinned by neurobiology. Social constructs are far more complex (I think I’ve said that before). To pretend that we don’t know enough to incorporate what we DO know about the influence of catastrophising, depression, hypervigilance and attention leaves us no further ahead in helping people manage with their pain more effectively. We simply must include what we do know or we are being both inhumane and unethical, IMHO.
        Why do I champion the BPS perspective? Because it makes more sense to me than other models. I have no alternatives.

        To improve the lives of people with chronic pain, we cannot wait for medications to abolish the pain (and besides, this doesn’t address beliefs and behaviour or social context). Some sobering information about medication:

        “A substantial percentage of patients do not respond favourably to treatment with tricyclics, as is also true of the other medications recommended for the treatment of neuropathic pain, with no more than 40-60% of patients obtaining partial relief of their pain.”
        Dworkin, RH et al: “Review & recommendations: Pharmacologic management of neuropathic pain: Evidence-based recommendations”; Pain: 132 (2007), 237–251
        “Improved treatment for patients with chronic types of pain is urgently needed. A meta-analysis has shown that less than two-thirds of patients with chronic pain obtain sufficient pain relief with available drugs”
        Jensen & Finnerup: Comment; The Lancet; 10.10.09, p 1218-19
        “76 trials reporting on 34 treatments were included. 50% of the investigated treatments had statistically significant effects, but for most the effects were small or moderate … the analgesic effects of many treatments for non-specific low back pain are small”
        Machado LAC et al: “Analgesic effects of treatments for non-specific low back pain: a meta-analysis of placebo-controlled randomized trials”; Rheumatology 2009; 48:520–527
        “59 drugs identified as analgesics were introduced from 1960 to 2009 and remain in use … only one, sumatriptan, was sufficiently effective to motivate the introduction of many similar drugs acting at the same target (triptans) … Very intensive research efforts directed at diverse molecular targets related to pain mechanisms produced thousands of publications, but those efforts have not yet yielded new analgesics with sufficient effectiveness … Morphine and aspirin, introduced for the treatment of pain more than a century ago, continue to dominate biomedical publications despite their limited effectiveness in many areas (e.g., neuropathic pain), and multiple serious adverse effects. The present assessment reveals the lack of real breakthroughs in analgesic drug development despite intense research efforts.”
        Kissin, I: “SPECIAL ARTICLE: The Development of New Analgesics Over the Past 50 Years: A Lack of Real Breakthrough Drugs”; Anesth Analg; 2010;110:780 –9
        “Most existing analgesics for persistent pain are relatively ineffective, have a high side effect burden or abuse liability and, more important, do not reduce pain in all treated individuals. … the number of patients who are needed to be treated (NNT) to achieve 50% reduction in neuropathic pain in one patient is more than four, a high cost for the 3 unsuccessfully treated patients and their physicians”.
        Woolf, C: “Review: Overcoming obstacles to developing new analgesics”; Nature Medicine (Supplement); 16,11: 1241 – 47; November 2010
        “Overall, present treatment options result in modest improvements at best, & part of chronic pain management should include dialogue with the patient about realistic expectations of pain relief, & bring focus to improvement of function … Of all treatment modalities reviewed, the best evidence for pain reduction averages roughly 30% in about half of treated patients … do not always occur with concurrent improvement in function … These results suggest that none of the most commonly prescribed treatment regimens are, by themselves, sufficient to eliminate pain & to have a major effect on physical & emotional function in most patients with chronic pain. This conclusion is hardly surprising in view of the complexity of chronic pain. In the absence of a cure, there is a need to maximise symptom relief so that patients are able to lead the highest quality of life possible. If there is no … improvement in patient pain, physical & emotional functioning, then an alternate treatment approach should be recommended.” Turk DC, Wilson HD, Cahana A: “Treatment of Chronic Non-Cancer Pain”, The Lancet 2011; 377: 2226–35 (25.6.11)

        What these reviews suggests to me is that we can’t abandon people while they wait for “something to work” to take pain away. Maybe pacing is one option, maybe CBT is another (personally I prefer ACT), exercise is definitely part of the mix, supported RTW is absolutely part of the picture, and personally I think people should be financially supported as they participate in these approaches. Some people may not find these approaches helpful – but to dismiss them without trying them in good faith seems short-sighted.

        I’ve just completed my PhD looking at the ways people who cope well with chronic pain go about doing what’s important in their lives. Oddly enough, it’s not medication that made the difference. It’s a process of making sense of pain, understanding and accepting that hurt doesn’t equal harm, having a health professional (my preferred term instead of “medical”) express confidence and willingness to be there, having a strong drive to engage in valued occupations (not work necessarily, but perhaps sports, parenting and so on), having a range of coping strategies to draw on in a flexible way, using exercise and having nonjudgemental awareness of pain. Now this is from people who have pain, not my words, but their words. They self-identified as “living well”. These people readily acknowledged they didn’t rely on waiting for a cure or pain relief, but actively sought ways to get on with life. They used “anything that works” and picked and chose from all the various resources available. It’s absolutely possible for people to live well with chronic pain. That’s what I’m aiming to promote, and I’m learning from people with the “lived experience” of coping. Not from academics. If they can do it, what’s getting in the way of others also doing it? And how can I support people to live like this? That’s what I want – and far more attention to providing appropriate support than currently occurs.

  4. Eindt, thank you for your valuable contributions on issues that are dear to my heart but go way beyond the context of this discussion. Over here in Australia I think we are about to see the same distortion of Engel’s views being applied to disability assessment within our welfare system, the catch cry being – “Work is good for your health”. Dame Carol Black was in our country a year or so ago and her widely reported views appeared to strike a chord with our politicians.

    1. John, do you not think that good work is good for health? The data seems to support this, and it’s been my experience with people who have chronic pain that it is also highly important to them, but they lack confidence that they can manage work.

      My irritation is with the idea that ALL work is good, and of people being called “welfare dependent” as if it’s some kind of drug addiction. I don’t believe that in most cases.

      I actually support Dame Carol Black’s work, also that of Gordon Waddell and the authors of the Health Benefits of Work document – the research was pretty sound and exhaustive. I don’t support misusing this as a way to clobber people who receive benefits. But it is a tricky one when amongst the people who clearly need to receive support, there are others who do not appear to be so deserving (case in point: the person on compensation for 25 years who openly admits to going whitebaiting and surf casting every opportunity he can, because his company went broke due to financial mismanagement, while he was on ACC with a back pain).

      I’m not sure that living on a benefit is all that good for people’s health, but the process of coming off a benefit needs to be managed with compassion – something that’s missing from many of the current Government initiatives.

      1. Bronnie, from my reading I don’t think that “good” ever appeared before “work”. The main difficulty I have with Waddell’s “model” is that the patient is not included. It seems ludicrous for a government to embark upon an experiment in social engineering that is based upon his “model”.

  5. BTW I really enjoyed the analysis from https://dl.dropboxusercontent.com/u/32109159/Illness%20as%20Deviance.pdf – well-written, thoughtful and some excellent points. I may write something on this because I can see your points about misusing aspects of the BPS model, and the Waddell & Burton papers. I’ve certainly seen some extraordinary working environments that are unhealthy, boring, with high demand and little control.

    But to me the focus needs to be on changing the ideology of market forces as omnipotent – this has been a spectacular failure in the housing marked in Christchurch where less desirable tenants are unable to find adequate housing while landlords are raking in enormous profits.

    The same situation occurs with work. While some workplaces attend to health and safety to the point of ridiculous (reporting paper cuts for goodness sake?!), others don’t even pay lip service to the notion (contractor working on our house failed to have any safety equipment while his workers were fixing our roof). And we know that people at the lowest end of pay and skill just don’t have negotiating power. But this isn’t BPS – this is adhering to outdated and exploitative work practices and economic policy. A political problem if ever there was one. The model/framework can help explain the situation, but this doesn’t mean the answers lie with the individual. Maybe that’s where the real issue lies: if it’s a societal issue, then a societal solution needs to be found.

    1. @John, I think that was a comment/amendment made in the Australasian version of the endorsement. I have the documents here, read them when they were first released, but haven’t looked at them recently. At the time I was delighted to see that finally the medical/impairment-based stranglehold on health and disability was being challenged, but I completely agree that omitting people with health problems is a grave error. It reflects an outdated view but one that is prevalent amongst a certain demographic. It’s taken me time to be comfortable with HOW we can integrate findings from both quantitative and qualitative research, and given that a great deal of “consumer” (hate that term!) research is qualitative, I can understand why there is so little included in the report.
      The interesting thing is that people I’ve worked with WANT to return to work. They lack confidence to, but work is very important to notions of competence, confidence and having a place/role in the community. and that’s words taken from people with chronic pain and years of being off work.

      1. Bronnie, it will be interesting to see whether Dame Carole’s recommendation that the “sick note” be replaced by the “fit note” has been taken up in Australia and whether more people are returning to work as a result of it. I suspect it will just be seen as “a good idea at the time”.

      2. I do like the idea of a “fit note” rather than a “sick note” but I think there will be some problems associated with it. For many people, identifying what a person CAN do is incredibly difficult – what’s the difference between hurts and harms? is a concept some doctors and many other health professionals struggle with. There is really no contraindication to lifting boxes off the floor if a person has acute low back pain, yet for many people it would be incomprehensible to think about providing a “fit note” to indicate that it’s OK – because it increases pain. And then we’re back to the old idea of “let pain be your guide” which hasn’t worked so well, especially for people with chronic pain.

      3. @ Bronnie. I think it is a much more complex matter than is first apparent. There has to be informed agreement (consent) between the health professional, the person concerned and the employer as to the exact duties which are to be undertaken on RTW. Also, who is going to supervise the RTW? There will no doubt also be legal implications.

    2. Pleased to hear that some of that was of interest.

      @adiemusfree: There are still a couple of things I want to respond to here, and that even skipping over a lot, I’m afraid that this is another long reply:

      re non-BPS problems with the way in which pain has been/is treated: To me, these problems are a good reminder of the problems within our health systems, and the need to be as cautious as possible with claims of expertise and claims about our ability to improve the health of others. Expanding healthcare to the routine medicalisation of the psychosocial aspects of people’s lives seems entirely the wrong response to this. Also, at least with pharma we can get double-blind RCTs – if we’re relying on non-blinded trials and self-report measures to assess cognitive approaches we could easily just be teaching people to fill in questionnaires more positively.

      “why write off a useful model simply because some people misuse it, and more to the point, what do we replace it with?”

      I think it’s made people’s lives worse and has been used to promote quackery. Within medicine/health-care, I think that the biomedical model works fine with an insistence upon honesty about ignorance, and that given the current state of our societies, medical and academic systems, etc expanding into the psychosocial aspects of people’s lives just because they have health problems is very dangerous. In society and politics the social model has been successful at improving the lives of disabled people – it’s not without it’s limitations, but if that’s you’re aim, it’s a good tool.

      “understanding and accepting that hurt doesn’t equal harm”

      I thought that you said you were not a political animal? Try to detach yourself from the healthcare perspective and consider in political terms what it means to have the state take those with health problems and have them understand and accept that hurt doesn’t equal harm. How much ‘hurt’ can we confidently say is not harmful to a human being? How much should we expect people to hurt as part of their return to work programme? Can you be surprised when this approach is used to make life worse for sick and disabled people?

      We all have our own views about the value and purpose of life, and it shouldn’t be surprising that implementing a system in which health workers take it upon themselves to tell others that they should be able to do work that causes them abnormal pain (in order to be empowering of course) leads to people feeling abused. No doubt we could imagine some fantasy world in which ‘fit notes’ were only used with the very best of intentions in order to lovingly caress those with health problems towards a more fulfilling life, but given the history of our societies and their current reality, such fantasies should not be confused with real plans of action.

      “personally I think people should be financially supported as they participate in these approaches.”

      What if they don’t want to participate in these approaches? What if they look at the evidence around biopsychosocial rehabilitation and think ‘this is worthless quackery and I want nothing to do with it’? There was recent talk of stripping benefits from those with MH problems who refused treatment: http://www.telegraph.co.uk/news/politics/conservative/10964125/Tories-discuss-stripping-benefits-claimants-who-refuse-treatment-for-depression.html Considering the limited efficacy of our treatments for many people’s MH problems, and problems with side effects, that would seem to me to be an amazing abuse of power.

      It’s also worth noting how an exaggerated view of the value of rehabilitative approaches underpinned this proposal:

      “We know that depression and anxiety are treatable conditions. Cognitive behavioural therapies work and they get people stable again but you can’t mandate people to take that treatment,” the source said. “But there are loads of people who claim ESA who undergo no treatment whatsoever. It is bizarre. This is a real problem because we want people to get better.

      … The source suggested that successful treatments could reduce the numbers of people with mental health issues claiming the benefits by up to 90 per cent.”

      “These people readily acknowledged they didn’t rely on waiting for a cure or pain relief, but actively sought ways to get on with life.”

      How virtuous. People want different things from life. The things that lead some people to consider themselves to be ‘living well’ may be a tedious imposition to others, and I’m uncomfortable with the targeting of those with health problems for psychosocial intervention when there is not good evidence that they, as individuals, are less able than others to decide how to live their own lives. Why not target those with the most power and money in society – surely it is there that the most important gains can be made? The recent banking crisis highlighted the fact that there’s no lack of cognitive distortions amongst our investing class – yet they seem to miss out. There was research claiming to show that income above £70k does not increase personal happiness… yet the rich have not been provided with self-management classes intended to help them donate the optimal amount to charity.

      “If they can do it, what’s getting in the way of others also doing it?”

      I’m not sure what sort of political or moral foundations you are working from, but it is worth being aware of how that sort of questioning has been used in the past to downplay the injustices faced by those in positions of hardship. On Obama’s election, there was considerable discussion amongst African-Americans over whether his success would lead to these sorts of musings, and there have since been examples of those on the right arguing that Obama’s success makes claims of on-going racial injustice in America absurd: “If he can do it, what’s getting in the way of others also doing it?”

      Maybe we just don’t know? Maybe it’s all manner of complicated things that are out of their control? Maybe some of them just love to revel in the sick role. Until there’s some really good evidence that allows us to confidently say, I think it’s best to leave people to live their own lives as they see fit, without being psychosocially managed by the state.

      re Spin: I want to give one detailed example of spin in BPS research. I’m going to look at the trial which I mentioned being part-funded by the DWP. You had already covered it here: https://healthskills.wordpress.com/2011/04/27/working-inside-the-envelope-or-pushing-the-boundaries/

      In the Aylward and Waddell paper posted above there was talk about recovery being expected for ‘common health problems’ and the Waddell and Burton paper cited for explaining this category classes Chronic Fatigue Syndrome as one of the “minor mental health problems”: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/208968/hwwb-concepts-of-rehabilitation.pdf (it was written for the DWP). Aylward helped to fund this large and expensive biopsychosocial CFS trial through his role of DWP CMO, and attended the trail’s steering committee meetings as an observer, along with another DWP official. All of the trial’s three Primary Investigators reported COIs involving the insurance industry, and Peter White is also an advisor to the DWP. This trial and the approaches assessed are deeply entangled with the recent biopsychosocial welfare reforms.

      In this non-blinded RCT four arms were compared, i) Specialist Medical Care only (a minimal intervention that involved diagnosis and some basic advice), ii) SMC + CBT, iii) SMC + GET, iv) SMC + Adaptive Pacing Therapy (a form of pacing that involved having patients keep activity diaries and advising them to do 70% of what they felt able to do). While simply the nature of interventions might be expected to lead to some response bias for those interventions encouraging patients to feel they had greater control over symptoms, in addition those receiving CBT and GET were specifically told that these treatments have been shown to improve the health of patients – homeopathy has been found to be effective under these sorts of conditions.

      In addition to self-report measures for subjective symptoms there was also data for outcome measures hopefully less prone to response bias. 6 minute walking test results showed the same results for all but GET, which reported a statistically significant improvement, but not reaching the criteria for clinical significance that had been used for other outcome measures. Unfortunately, the PACE trial had dropped actometers as an outcome measure, even though the devices had been bought and used at the outset of the trial. This data could have provided more information on patients could engage in more activity over time. A previous meta-anaylsis of actometer results for CFS RCTs had found that CBT led to improvements in questionnaire scores, but not in the amount of activity patients were able to carry out.

      Data from PACE on levels of employment showed that biopsychosocial rehabilitation led to no improvements and that in fact, for all treatment groups, “receipt of benefits due to illness or disability increased slightly from baseline to follow-up”. http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0040808

      Now to look at the questionnaires used as the trial’s primary outcome measures. There were substantial changes in the way results were presented compared to the trials’ published protocol: http://www.biomedcentral.com/1471-2377/7/6 There have been a number of Freedom of Information requests for the results for outcome measures laid out in the trial’s protocol, and these have been denied for a range of contradictory reasons. First it was claimed that they were due to be released anyway, then it was claimed that they did not exist, then it was claimed that it would take too much time to release them… most recently a request for annonymised data that would allow the calculation of these results has been denied because it is claimed that this would breach patient’s confidentiality: https://www.whatdotheyknow.com/request/selected_data_on_pace_trial_part

      These deviations from the trial’s protocol have led to a situation in which the trial’s two primary outcome measures would allow a patient to be classed as ‘recovered’ even if they had reported a worsening of symptoms. I’m going to look more closely at their use of one of these, the SF36-PF scale.

      From their protocol:

      65 and under: was part of the entry criteria, and taken to indicate that a patient’s fatigue was “severe and disabling”, as required by the Oxford criteria for CFS.

      75 and over, or an improvement of 50%: was required for a patient to be classed as having a “positive outcome”.

      85 and over: was required for a patient to be classed as “recovered”.

      No real equivalent to the ‘positive outcome’ results have been release, even though there were reported as being the trial’s primary outcome and to be used to assess results according to a pre-determined measures of clinical value. They instead classed an improvement of 8 points as clinically significant, and a post-hoc analysis reported that the addition of CBT and GET to SMC led to an additional 11% and 15% of patients reporting this level of improvement for SF36-PF scores and an improvement of at two points for the Chalder fatigue questionnaire.

      In the trial’s initial publication it was claimed at the mean -1sd for the working age population was 60, and that this was an appropriate threshold for physical functioning in a normal range. They had actually used the mean-1sd for the entire population, 25% of whom were aged over 65. This of course led to a lower mean and higher SD than would otherwise be the case. At the trial’s press conference and in the trial’s information leaflet patients with a score of just 60 were described as “back to normal”. In the accompanying editorial it was claimed that the trial showed a recovery rate of 30%, using a “strict criterion” for recovery: “a score for both fatigue and physical function within the range of the mean plus (or minus) one standard deviation of a healthy person’s score”. This was also not true, and their ‘strict criterion’ for recovery was so loose that patients could have reported a decline on both primary outcome measures, and yet still have been classed as ‘back to normal’ or ‘recovered’.

      In a follow up paper on recovery ( http://www.meassociation.org.uk/wp-content/uploads/2013/01/White_PSM_Paper_Jan13.pdf ) they included some additional requirements for their recovery critieria, although these were again all deviations from their protocol which made it easier to class patients as recovered. They also continued to class patients with an SF36-PF score of just 60 as recovered, claiming that the threshold needed to be changed “from a score of ≥85 to a lower score as that threshold would mean that approximately half the general working age population would fall outside the normal range”. In fact, the data for the paper they cited is available in the UK National Archive, and shows that less 18% of the working age population report and SF36-PF score of less than 85, and their own protocol had already made clear that their criteria for recovery was intended to be more demanding than the normal range: “We will count a score of 75 (out of a maximum of 100) or more, or a 50% increase from baseline in SF-36 sub-scale score as a positive outcome. A score of 70 is about one standard deviation below the mean score (about 85, depending on the study) for the UK adult population.”

      I think that we can see how it is that ‘recovery’ can now be expected. The word has been twisted to the point that it no longer has anything to do with the restoration of health that most patients, doctors and members of the public believe it represents.

      @John Quintner

      Thank you for your thank you.

      “Over here in Australia I think we are about to see the same distortion of Engel’s views being applied to disability assessment within our welfare system, the catch cry being – “Work is good for your health”. Dame Carol Black was in our country a year or so ago and her widely reported views appeared to strike a chord with our politicians.”

      Dame Carol Black, and claims about the benefits of work, have been heavily involved in the UK’s welfare reform.

      re ‘work’ vs ‘good work’ – This could be an addition following a study from a different group of researchers which looked at things in a bit more detail and found that those with health problems who moved into low quality work ended up with lower self-reported QoL and more mental health problems than those who were unemployed. [I am less familiar with this work on employment and health, so it’s possible my memory is confused on some of the details here. I couldn’t remember enough details to find the relevant studies I had a quick look now.]

      This change does rather undermine a lot of the hype for welfare reform. Even if welfare reforms integrating the biopsychosocial model had led to more people entering employment, it seems unlikely that those with health problems who had only just reached the point of being able to gain some employment would be particularly likely to suddenly be competing at the top end of the labour market, making it difficult to (honestly) claim that such reforms are intended to help those with health problems.

      That many of the researchers involved in arguing for the health benefits of employment have ties to the insurances industry or DWP is a concern too. It is difficult to believe that they are not aware of the political context in which their work will be used, and their moral responsibilities.

      1. I ought to add the following:
        – I have chronic pain
        – I’m aware of the PACE trial. This is not featured in my recent review.
        – I’d love to see what you suggest people with chronic pain should be able to access

        Thank you for your interest and enthusiasm. I’m not sure what your overall intention was apart from arguing that by looking at what pacing is, and how people use it somehow imposes a privileged view on individuals who don’t share that view. With that argument I guess holding an opinion is itself privileging a view over another. Clearly you have issues with how the biopsychosocial model/framework is being implemented in your country. At the same time I don’t see equal recognition that by using the BPS framework/model there are many people who have experienced improved care and health.
        This discussion is now closed as I think it has strayed well away from the original post which reviewed the literature on pacing as a coping strategy.

      2. “I have chronic pain”

        I saw you mention that previously.

        “I’m aware of the PACE trial. This is not featured in my recent review.”

        I know. I linked to your post on it.

        “I’d love to see what you suggest people with chronic pain should be able to access.”

        I think that they should have access to a safe place to live, and a liveable income. Our poor understanding of the cause of many people’s pain should be acknowledged, as should our limited capacity to intervene helpfully. Patients should have substantial control over how resources are spent to improve their health, and informed consent needs to underpin everything. There should be no attempt to reassure patients, or encourage a more positive sense of self-efficacy, etc, etc, unless the nature of this psychosocial intervention is explained and the patient decides that they want to go ahead. They should be able to access reliable information on results for well conducted trials of proposed interventions (eg: with control groups designed to account for problems with bias), which include attempts to objectively measure impact upon employment, mobility, etc. Where self-report measures are used, information on potential problems with response bias, etc should be provided. Patients who do not find an intervention that helps them, do not want to partake in the available interventions, or would rather spend the available resource pursuing an interest like painting or photography should not be blamed for this. A similar approach should be taken with pharmaceutical and other interventions, I’ve just focused more on biopsychosocial management above.

        I’m afraid that I don’t really follow your summary of my concern about the way in which an increasing medicalisation of ‘pacing’ could be harmful. I think that you’ve misunderstood me though.

        “I don’t see equal recognition that by using the BPS framework/model there are many people who have experienced improved care and health.”

        Compared to what? I think it is likely that, overall, people have experience worse care and health because of the biopsychosocial model. I see no reason to give ‘equal recognition’ to the fact that some people are likely to have experience improved care and health because of it. Some people are likely to have seen improved care and health because of all manner of dodgy treatments and ideologies.

        “This discussion is now closed as I think it has strayed well away from the original post which reviewed the literature on pacing as a coping strategy.”

        I’m not sure if that means comments are closed, but I’ve assumed not as you just posted “I’d love to see what you suggest people with chronic pain should be able to access”

  6. I’ve been involved in RTW for years, it’s always a negotiation between what the person returning to work thinks they can do, what the employer has available, and I think occupational therapists have the most appropriate set of skills to carry this out. Regular supervision, review and refining goals is always part of it, while medical endorsement/support is integral to the plan (nothing worse than having a Dr sabotage a really good RTW programme because he or she decides to make a referral, or isn’t confident that the plan will keep the person with pain safe). Monitoring is critical – and again, I’d argue that occupational therapists are the single profession with the skill set entirely within their scope to work with all parties. I’m just a teeny bit biased towards an occupational therapy contribution here!

    Occupational therapists do have full awareness of legislative requirements – often more so than the employer, funder, or medical professional, with the exception of occupational physicians. We work well together – occupational therapists + occupational physicians!

    Of course not everyone needs this kind of team, and some need even more support – but for people with chronic pain, I think the size of the team needs to be kept fairly small to ensure the four primary stakeholders know who to contact and for what. Four stakeholders? first and most importantly, the person with pain, then the funder, the medical practitioner, and the employer in no particular order.

    Of course the process is often fraught with difficulties. There is no crystal ball that can determine whether a person will be able to manage work tasks, or that indeed anyone will go to work without sustaining some sort of pain or injury or illness. But people with chronic pain are capable of a great deal more than even they think they can – hence the need for including someone to be “on the side” of the person with pain so that they have someone to trust as they work their way through a return to work plan.

    I see it as my job in RTW to be the guardian of representing what the individual with pain says he or she can cope with at any one time, so that people who are often in a difficult and powerless situation have someone who can negotiate between all the four stakeholders. I don’t speak for people without their permission, but it has often happened, that I end up supporting a decision to withdraw from a RTW programme because the person isn’t able to sustain the work. And I have often had to negotiate quite strongly with the employer and the funder to allow the person more time and flexibility so they can continue until they have reached what they can sustain. More often I’m having to represent capabilities to the GP who can be more conservative than the person with pain!

    So I think RTW is an integral part of helping people learn to manage their pain. It offers people so many things that remaining at home or as a volunteer can’t. But more on this another day!

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