By Cynthia Toussaint.
I’ve lived with high-impact chronic pain for 35 years, and founded For Grace to help women in pain more than 15 years ago. During this time, my biggest issue and the one I hear most from people in pain is that no one cares about us. Our voice is lost and unheard among the din of healthcare professionals, scientists and researchers.
On September 22nd, that changed.
For three years, For Grace has been planning a Change Agent Pain Summit – our goal is to implement the NIH’s National Pain Strategy in California and be a model for the rest of the country. The Strategy touts integrative care as “best practice” for people in pain, and this model of care has helped me battle CRPS along with a dozen other auto-immune conditions. I’m not alone here as the majority of people in pain who reach out to us say that integrative care has made all the difference.
When For Grace assembled our Summit Design Team, we interviewed many healthcare and legislative thought leaders who were possible invitees. We got a lot of great feedback, but the idea that stood out most was that pain patients and their caregivers were not being given a voice… once again. That resonated deeply.
We decided then and there to break our Summit into two parts. For Part One, hosted in downtown Los Angeles in September, we gathered men and women in pain and their caregivers. It was a big focus group as everything we gleaned from our in-person and worldwide webcast attendees will be shared with the luminaries who attend For Grace’s 2018 Summit: Part Two.
To present our problem statement, our morning began with a panel of real-life people in pain and a caregiver. These passionate people spoke loudly and articulately about their pain stories and everyday barriers to care. The attendees sat up with attention.
We then moved on to possible solutions. Our wonderful keynoter, Dr. Bob Twillman, Executive Director for the Academy of Integrative Pain Medicine, caringly taught us about the National Pain Strategy, integrative care and how they work together. The attendees hung on to Bob’s every precious word as they yearned to learn.
I then had the distinct honor of presenting our annual award to Dr. Susan Samueli, a former woman in pain who’s made it her life’s philanthropic mission to bring integrative care into mainstream medicine. Besides Susan sharing her story of hope and courage, she announced that she and her husband Henry had earlier in the week given a gift of $200 million to UC Irvine to build a national integrative care and research institute.
Susan also spoke about how the Samueli Foundation worked closely with the Obama administration to include integrative care in the Affordable Healthcare Act. Susan’s words were pivotal, rousing attendees out of their chairs with a standing ovation.
After lunch, everyone was juiced with empowering enthusiasm. Change agents with capes, if you will. Tables were covered with paper so every thought could be scribed and saved. Our Summit architect, the mind-blowingly awesome Mindy Meyer, facilitated a World Café-style afternoon where key questions were asked about barriers to care and possible solutions.
People bonded as they moved from table to table, and at the end of each round, table hosts shared the major themes of the conversation. There were no wallflowers in this room as all had such a wealth of wisdom to express and were encouraged to do so. I’ve never seen such passion in my life, as these extraordinary people with pain finally found a place where their thoughts and words were heard, valued and recorded.
These Change Agents are my heroes – and we have them to thank for being the voice for all of us. When the National Pain Strategy gets implemented, it’ll be better than the one originally drafted. Better because the voice of the pain patient and caregiver will be deeply embedded.
Cynthia Toussaint is founder of For Grace, a Los Angeles-based non-profit that works on issues facing women in pain. She is also a frequent contributor to the National Pain Report.