Self management. It’s term we use very often in pain management, but do we really agree about what we’re talking about?
Maybe self management is different things to different people, maybe even different things to different people at different times! But if we don’t talk about what we’re aiming for, especially if we’re in a team that don’t talk – we’re bound to run into trouble.
Self management has been defined by academics in several ways, which doesn’t help, but all the definitions seem to include concepts of wellbeing, activities that the person with the health condition does, and encounters with the health system. The Institute for Healthcare Improvement states that self management includes three things:
- care of the body and management of the condition,
- adapting everyday activities and roles to the condition, and
- dealing with the emotions arising from having the condition
They also say ‘Good self-management support involves collaboration between patient and their care provider, one in which the provider is a coach as well as clinician and the patient and family are managers of daily care. ‘
One of the assumptions that I intially had about pain self management was that it was mainly nonmedical. Visits to the GP for repeat presscriptions maybe, but nothing more. I assumed that the pursuit of pain reduction would be mainly over, that living a life instead of being a patient would be the focus. That is certainly my focus in my life with fibromyalgia.
Some of my colleagues believe that once a person has had exposure to pain management, especially group-based, intensive pain management, that should be enough and the patient be discharged to the GP. Others think that a single programme, no matter how well-delivered, may not be all things to all people.
Some of my colleagues think that working individually with people is the best way to deliver pain self management – and that seeing a person once a week for, say, 12 weeks is the best way to ensure they’ve developed and integrated their coping strategies into life. Some others think this isn’t enough intensity to create behavioural change and that there is something added by exposure to a group process.
I’m still pondering. From what I’ve read in the literature, ‘pain management lite’, or individual sessions a couple of times a week for however many weeks doesn’t have as much impact as intensive ‘immersion’ pain management every day for three weeks. But I know that a three week pain management programme alone doesn’t always have the long-lasting impact that I’d hope it could.
I’ve also read about self management in other health conditions – most of the literature in, for example, diabetes and respiratory conditions, shows that ‘fading’ or providing gradually decreasing support for self management while handing over from secondary care to primary care is more effective than simply providing ‘a programme’ and discharging into the community.
We don’t do this at the moment in pain management.
Here’s my current take on self management in chronic pain – this is my opinion, based on my experiences and reading of the self management literature.
- People are more or less ready for self management – the stages of change model seems to have some bearing on the degree of acceptance that people have for learning to live with their pain rather than seeking pain reduction. This means that some people are ready for only certain aspects of self management, and that they may need several exposures at self management before they take control.
- Some people need the intensity of a full time, three week group programme to start to feel confident that self management applies to them, and to get the constant reinforcement of behaviour change. Three weeks of hearing other people in the same position as themselves, often being challenged more strongly by group participants than the facilitators, and being supported daily to make behavioural changes is what they need to see that change is possible. While a programme like this can’t always influence permanent changes, it can provide that initial impetus that less intensive approaches can’t do.
- Adopting self management involves a complex set of attitudes, beliefs and behaviours. It’s not like remembering to take medication on time, or doing daily exercise or even eating a more healthy diet. It’s all of these AND attending to thinking patterns, setting goals, confronting the changed functional abilities, being satisfied with doing less or being challenged to do more, communicating effectively – all the while having messages from the media, family, community and even health care providers about finding ‘a quick fix’ in the form of medication, injections, surgery.
- People don’t make changes easily and support (of the right kind) can help them maintain newly developed behaviours. The information from diabetes self management, among others, shows that providing ongoing but less intense support after new skills have been introduced, helps to maintain behaviour change. I don’t think it’s enough to be exposed to new strategies, start to make changes, then be discharged to primary care. What seems to work in diabetes and other chronic health conditions is either intermittent, time-limited support for the person with pain, or really effective support from the primary care clinician. In my experience, primary care clinicians don’t always feel confident to give the kind of support that is needed to maintain pain self management. Maybe there is another option: give both, AND support to the primary care team.
- People who have the offer of more pain reduction (through injections for example) find it really difficult to maintain self management, especially through setbacks and flare-ups.
- People seek help for their pain, even after self management, for many reasons – but often it’s not the pain itself that is the primary problem. It could be low mood, new stressors, someone suggesting that a new treatment might ‘take the pain away’. Maybe for some people, intermittent ‘booster’ sessions would reduce the potential for them to re-enter the medical ‘cure or pain reduction’ merry-go-round. This might be less expensive than the alternatives and help retain the person’s focus on living as a person rather than a patient.
- Maybe self management isn’t for everyone. Some people really can’t believe that science hasn’t produced a cure for everything. Some people do have secondary gain from being ‘unwell’. Some people have so many other areas of vulnerability that they don’t have the resources to maintain self management. Can we accept this? And is there a way to minimise the unnecessary use of health care resources, maintain human dignity and choice, while providing support to the person and their family? Is this what a secondary or tertiary health care provider can do that a primary provider cannot?
What I think is important is to work as a team. Even if the person doesn’t adopt self management, if they come back for more ‘something’, it shouldn’t be a single discipline that makes the decision about the next best step for management. We’re all likely to see the world through our own biases (what? even me?!!), so at the very least it would be helpful to discuss why someone has returned for more help before making a decision.
And keeping an eye on The Bigger Picture seems a good idea – after all, maybe seeing someone once every three months for a talk about their wellbeing is cheaper than having them go to Emergency Department or being referred for another round of investigations, or even having repeated injections.