This week, we have continued the National Pain Report’s support for promoting the largest chronic pain patient survey ever. If you haven’t taken the survey, you can by clicking here. If you haven’t yet filled it out, please do.
In her first report, Terri Lewis, Ph.D.—the author of the survey—explains what the survey was designed to do. To read that, click here.
In her second report Dr. Lewis gave us a summary of what chronic pain patients are saying in the survey – important data. Read the summary here. (Hint: chronic pain patients are feeling isolated and are looking for help.)
So for the rest of her report, read on:
What jumps out in these responses?
Healthcare experts are woefully under educated about chronic and complex diseases, pain in general, and resources within their communities. This lack of knowledge is evident in the progression of harms over time experienced by many respondents. The silos of care fail communication and care coordination, adding increased cost and burden to every sector of the system.
Nobody signed up for this sea change, nor were they consulted about solutions. There is no input, no functional appeal process, and thus no recourse at any level. Individual needs don’t matter. There is no seat at the design and implementation table.
Everyone is affected. Professionals, children, parents, students, laborers, healthcare workers, craftsmen, truck drivers, mothers of newborns. Our acute healthcare model fails to address the way in which people live over the life course. A one size fits all approach fails to account for differing experience, geography, and distribution of health resources.
People have tried everything that is available. Here is a list of what folks report they have tried to care for themselves.
Prayer is on this list.
When everything has failed, prayer is the last desk by the door and suicide begins to look like a very doable final solution.
We are still collecting. We want to hear from you no matter your experience or your role – health care workers, care partners, mental health clinicians, public safety officers, insurers, affected individuals. All voices will round out this activity and widen our understandings.
Results are raising as many questions as I have asked.
(Editor’s note—please read all three of the stories and, if you haven’t, also fill out the survey. When you’ve done all that (please), then provide a comment in our section so we can see what the chronic pain community is thinking. Please fill out that survey—ok I’ve mentioned that twice)
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