All by myself… don’t wanna be

Throughout my career, I’ve been interested in how and why people see clinicians about their pain. I’m intrigued by the journey before, during and afterwards.

I’m interested in the social factors influencing choices in healthcare. If I’ve been gardening over the weekend and I wake up Monday with a sore back it’s easy to see a physio here in NZ. That visit is likely paid for by our accident compensation system (24/7 no-fault scheme paid for by taxes and levies). And the jolly joy germ in me thinks “Well at least that means people don’t have to see a doctor first” – but there’s also a tiny cynic in me wondering “what if…?”

The ‘what if’ is all about knowing what I know about low back pain trajectories and how little anyone can do to ‘treat’ acute low back pain. It’s about thinking maybe it’s time we took a hard look at what we’re not doing well but seriously need to. And a dollop of “what if we took the market-driven ideology out of healthcare, removed the perverse incentives that create the drive for repeat customers and unnecessary treatments, and gave people more information about how to self-manage?”

If you’re not aware about low back pain trajectories, here’s the thing: repeated episodes of low back pain are more common than not. In fact there have been a good number of longitudinal studies investigating trajectories finding three or four groupings: High intensity and stable; high intensity but gradually decreasing; medium intensity and stable; and low intensity and decreasing (Andersen et al., 2022). Other studies have shown fairly similar and stable paths for people with chronic pain (Glette et al., 2019).

Now my point is that we know this, and we’ve known it a while. My question is: If it’s probable someone will have either ongoing pain, or recurrent pain, what are we doing to help people manage by themselves? Where are our public health messages about self-managing pain? What do our clinicians themselves know about the trajectories and self-management? Could there be a somewhat selfish reason for the lack of attention to helping people help themselves?

Conversely, I know that when you’re feeling sore, especially if the pain is new, intense, or has been grinding on for ages… seeing a clinician seems sensible. Nobody wants to be dealing with pain all by themselves. And there are some people who feel that self-management is essentially dumping the problem back on to the very people who are most vulnerable – almost like self-management is suggested because “Oh the doctor’s not interested”, “On you go, I can’t do anything about this, you deal with it” (Gordon, et al., 2017, p. 213).

Actually, the paper by Gordon, et al., points out that people may be given information during a course of treatment but that nobody follows the person up – even though both people with pain, and those treating them think this is important. It’s worth noting this study was carried out in a publicly funded jurisdiction. We don’t much have that for non-accident-related problems in New Zealand, so there is very little self-management support and no follow-up at all for most.

Supported self-management is the term given to approaches combining self-management (as I defined it here) with clinician support. The clinician support seems to be important, as Svendsen et al., (2022) found, as did Devan et al., (2018). This is because people find self-management hard work (believe me, it surely is – all that planning, judging, deciding, prioritising, fitting it all in to an already busy life!), particularly if pain and low mood and unhelpful others are around. And the time people feel most vulnerable is likely during a flare-up or when other life events demand energy. Supported self-management will only help, however, if the support offered (especially during a flare-up) continues to focus on supporting self-management. It won’t work if the person’s confidence to manage by themselves is eroded by a well-meaning clinician referring them off for another scan or procedure, or bumping up the medications …

Now if I look at the New Zealand setting, where is supported self-management? Despite showing that self-management programmes for pain are cost effective (see Chowdhury et al., 2023), there are few self-management programmes available and there doesn’t appear to be anything for ongoing support – at least, not freely or widely available. Most pain management programmes in NZ are a combination of exercise plus psychology but the content of those programmes is not visible. Self-management strategies need to be integrated into daily life and there’s very limited occupational therapy involvement even though this is what occupational therapy is all about.

There is about to be a new government in New Zealand. The spokesman for health in the National party was a GP. I hope that he chooses to step up to the challenge of implementing supported self-management for pain – and takes the lives and suffering of the 22% of New Zealanders living with chronic pain seriously. I hope he listens to academics who know of good solutions – and doesn’t simply focus on expediency and simplistic notions of ‘quick fixes’ that have not worked. Privatising healthcare has led to wider service availability – but lower quality of care. There is no incentive to pay for a senior experienced clinician when a less expensive new graduate can come in to do the job. It takes time to develop a deep understanding of just how difficult it is to self-manage pain, and it takes time for clinicians to let go of their ideas about ‘what works’ and start to listen to the people they want to help. It takes maturity to say ‘your idea sounds great’ when someone comes up with a plan to help themselves – even if that plan doesn’t look like something learned in undergrad.

The thing is, people with pain want supported self-management – but it takes time to learn why and there’s a process of coming to terms with it. Once someone has learned that pain is likely to hang around, and medical approaches don’t offer very much, the really hard part begins: picking up all the pieces of life, stitching it back together again but differently, and then carrying on with daily self-management.

Andersen, T. E., Karstoft, K. I., Lauridsen, H. H., & Manniche, C. (2022). Trajectories of disability in low back pain. Pain Reports, 7(1), e985. https://doi.org/10.1097/PR9.0000000000000985

Chowdhury, A. R., Schofield, D., Shrestha, R., & Nicholas, M. (2023). Economic analysis of patient-related effects of an interdisciplinary pain self-management program. Pain, 164(11), 2491-2500. https://doi.org/10.1097/j.pain.0000000000002959

Glette, M., Stiles, T. C., Borchgrevink, P. C., & Landmark, T. (2019). The Natural Course of Chronic Pain in a General Population: Stability and Change in an Eight-Wave Longitudinal Study Over Four Years (the HUNT Pain Study). Journal of Pain. https://doi.org/10.1016/j.jpain.2019.10.008

Gordon, K., Rice, H., Allcock, N., Bell, P., Dunbar, M., Gilbert, S., & Wallace, H. (2017). Barriers to self-management of chronic pain in primary care: a qualitative focus group study. British Journal of General Practice, 67(656), e209-e217. https://doi.org/10.3399/bjgp17X688825