Stigma, Advocacy, Policy, and Funding – Just beginning
Stigma, advocacy, policy and funding are all challenges folks with chronic pain face every day.
This is an important project dealing with a broad and complex subject. Adding to that is the lack of understanding, attention, and funding it receives.
Those in chronic pain must continually fight against social stigma, advocate for themselves, dispute against poor insurance policies. Some physicians were literally handcuffed by well-intentioned but poor government legislation. Chronic pain patient rely on under-funded medical research to the most financially medical burdensome challenge faced in society today. Chronic pain is the number one reason people seek help from the medical community. Yet training in pain management receives the least amount of training.
Come back in the next weeks and months and see how this page develops, as this is the subject of my next book.
The purpose of the book is to educate and empower patients, providers, educators and policymakers in how they can best help those struggling with chronic pain. OK, yes, that is a broad audience, but one has to begin with a vision.
How you can help
To start, I need brief patient and practitioner experiences (positive and negative) to include throughout the text showing what has worked well (and not worked well). Real human interest stories are powerful! If you’ve wrestled with stigma, discrimination, or rejection by your physician, tell me your story. Doctors, if you’ve had a patient that didn’t respond well to other practitioners, but you were able to help your patient regain function and quality of life, I need to hear from you. Legislators, what’s happening in your state to improve access to medical services for those in need in all biopsychosocial domains? Your comments, suggestions, stories are welcome.
All submissions will maintain HIPAA compliance. Each submission used in the book will receive a signed non-disclosure agreement from Striving to Thriving. It explains how I’ll use the submission prior to publication for your review. I’ve provide a story submission page you can use. Or, if you have a compelling story and just can’t wait, you can also reach out to me via email at firstname.lastname@example.org with “Submission” on the subject line. That’ll work too.
Structure and Content
In the upcoming weeks and months, I’ll be fleshing out the structure and content of the book. I will base this on a few things. The first is a report titled, “Pain Management Best Practices Inter-Agency Task Force Report: Updates, Gaps, Inconsistencies, and Recommendations.” The U.S. Department of Health and Human Services published this report in May 2019. The US Pain Foundation recently published a report titled, “A Chronic Pain Crisis US Pain-2022 Final Report.” This is an incredible report providing a critical update to the state of affairs relating to the many aspects of chronic pain. And last, I will interview industry leaders as to the challenges they face in healthcare delivery. Their input and voice is needed in order to drive change in the medical education systems in place in order to meet the needs of the chronic pain community.
The goals are to:
- Capture all sides of critical issues with the stakeholders (patients, providers, educators, policymakers).
- Identify rational solutions.
- Fund those solutions.
- Implement those solutions.
- And do so with minimal unintended consequences.
When I first started laying out “Striving to Thriving” I thought I had a good idea where the road would take me. However, the more research I did, and the more I learned from my pain specialist, mentor and friend, Dr. Lisa Jo Stearns, I realized this journey could take me in so many directions. And each direction might lead me to distant unfamiliar places. But isn’t that where chronic pain always takes its victims? To unfamiliar places in body, mind, and spirit?
I’ve received very positive feedback on our inaugural book, “Striving to Thriving.” Yet, I know it only presents the tip of the iceberg. There’s only so much you can cram into about 300 pages and still hit all the bases. There is a lot of content I cut out of the book, to keep the page count manageable and book affordable. That’s why I pulled the appendices out and made them available on the website, which is also for the convenience of the reader as well. But there was also a lot of material I pulled out that was not specific to PNE (pain neuroscience education) but still related to the topics discussed here.
As mentioned above, chronic pain is a broad and complex subject. It reaches far beyond the biological sensation of discomfort into the psychological aspects of stigma, depression, guilt, anger, and more. Patients must wrestle with the frustrations of healthcare delivery of the so-called “affordable healthcare” which has turned out to be anything but affordable, or efficient. Insurance companies continually cover less and less, and decline more and more claims, while charging more and more for less. The unintended consequence is literally driving specialists out of the marketplace in some areas. If one lives in a major metropolitan area, they might face fewer challenges. But if you live in a small town in upstate New York, your options for excellent care in pain management are severely limited unless you’re able to drive for a few hours to New York City or Boston.
The CDC (Centers for Disease Control) muddied up the waters with their Opioid Prescribing Guidelines. While they were well-intended, they poorly executed the roll-out, resulting in many unintended consequences. I’ll save that discussion for one of my podcasts at another time after I’ve interviewed experts on the subject.
What we have here with all these complexities combined is one enormous onion with many layers. And when we peel one off, we find yet another just beneath. We just have to keep peeling away until we get to the core. It will be at the core of those onions where we can make those critical differences that changes lives.
As I brainstorm and work with professionals throughout the related industries, I’ll update this page. So hang with me and please stay tuned….
Be well and be blessed, David