I'm reflecting on the type of pain management approaches on offer to people who have pain, and noticing that there doesn't appear to be an "independent living" or "disability rights" movement amongst the chronic pain community. This means the predominant voices in chronic pain research are clinicians or researchers, and the voices of people with pain seem remarkably silent.
What would it mean to have people with chronic pain be involved in determining how chronic pain is viewed?
http://www.innovationunit.org/sites/default/files/Independent%20living.pdf
Fascinating question Bronnie.
I wonder if this situation is a reflection of the way in which some disability activists (historically at least) have down played the role and importance of the body and impairment. As a result people with chronic pain have not felt at home there. This is compounded by the experience of many of having to fight to have their pain legitimised by health professionals and lay people alike. Throw in the 'expert patient' movement which has a nod in the direction of recognition and empowerment but to my mind is largly a-political. Add to that the challenge of pacing (physically and emotionally) activism. I think people with ME/fibromyalgia are often more vocal - perhaps because of the larger number of younger people.
Never the less collegues have worked to involve people with chronic pain in research development. Our current programme of work has provided a group of older people with skills in searching and appraising literature and a long standing consultative group has provided members for an advisory group. We have also used qualitative research around older peoples experience to shape future work. Of course still a job to be done in terms of politicising folk - but who sets that in motion; enlightened professionals?
Thanks Derek, yes probably it is a dialogue between "enlightened" professionals and people who have chronic pain. I guess one thought I had was that chronic pain, unlike many disabling health conditions, can be readily misunderstood by both the lay community ("why can't they just fix me?") and the health community ("why don't they just get better?").
Is there concern from within the self-management/psychological approaches to chronic pain sector that people with chronic pain might not really like what they are being told is good for them? Is there a fear from clinicians and researchers that people with chronic pain want to focus only on cure, not management (ie the self management model is unpalatable, and professionals need to "convince" people that self management is a Good Thing?).
Not that I want to focus on political activism, but it does seem odd, given the number of people living with ongoing painful conditions.
I do have access to a "consumer" group organisation that actively reviews research proposals, and aims to include "consumers" in research relevant to their health condition. I'm really interested in how you've gone about your work with older people - will go and investigate!
My hope is that people with chronic pain can be involved in research and person-centred health management. It just feels a bit like people with chronic pain may be disenfranchised, and it would be fascinating to discover why.
I'm not sure if I have your email - if you contact me at [email protected] I'll send you a copy of one of our posters on the service user review.
As a Nurse Practitioner, and a chronic pain patient myself (FM), I serve many patients with chronic pain. My emphasis is to teach them that they won't be cured, but that they must learn to manage their pain. I teach them exercises to lessen pain, add to their flexibility, endurance, etc. Granted, pain medications are also used, but the emphasis should be in long term management of pain, just as we would any other chronic condition. Not all patients are happy to learn that they are responsible for their long- term wellness or illness management, depending on how one views the condition. Most chronic pain cannot be cured, only managed to a point where one can function. Concentrate on what patient can still do, and move from there. What is important to the patient? That is of great importance, as it will serve as the impetus for improvement. Pain does not necessarily equal disability, but might lead to chronic depression and downward spiral. No easy answers.
In Canada we have at least 2 organizations in which people with pain, health care researchers, health care professionals and others join together. Both organizations include advocacy and disability rights discussions.
http://www.canadianpainsociety.ca
http://www.canadianpaincoalition.ca
- Badges
- Science topic
- Similar topics
- Psychology