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Cynthia Toussaint at the 2017 For Grace Summit.

For Grace is a wonderful organization that focuses on improving the lives of women who live with pain. I recently interviewed the founder of For Grace, Cynthia Toussaint, about a new project.

Last year at your annual Women in Pain conference, For Grace started a two-year program focusing on the National Pain Strategy. That’s a bit different from what is usually on the agenda for the conference. What prompted you to take this step?

Over the past nine years, For Grace held conferences to improve the lives of women who experience chronic pain and their caregivers. The time has come to make more long lasting, systemic change.

The catalyst for our Change Agent Pain Summit Part One & Two (held in 2017 and 2018) was the disappointing outcome of a California bill that aimed to improve access to pain medications. For Grace sponsored a Step Therapy bill for six years (2009 to 2014), and by the time it was signed into law, the legislation was too watered down to really help anyone.

Rather than putting so much energy into trying to improve one sector of the pain care system, we wanted to engage all of the sectors and have them work together to improve the over-all system of pain care in California.

Your goal is to get the National Pain Strategy implemented in California Please tell us more about this and what For Grace is doing to meet the goal.

The goal of our Change Agent Pain Summit is to implement the NIH’s National Pain Strategy in California, and be a model for the rest of the country. We see the NPS as a blueprint to deliver optimal pain care — and what we love most about the strategy is that it calls integrative care “best practice” for pain management. However, since the NPS was drafted in 2015, we think it’s gathering too much dust on the shelf. The time for implementation is now.

For our summit, we will bring luminaries from all of the different sectors of the healthcare systems together. We’ll enlighten them about the NPS and integrative care — and have these thought-leaders think deeply about barriers to pain care and possible solutions. Through cross-pollination, World Café style, a plan of action will emerge.

After doing phone interviews with some of these luminaries, it became evident they took issue with the NPS having little input from people in pain and their caregivers. Because we wanted to be sure this all-important sector has a strong voice with our summit, we split the event into two parts. Our September 2017 summit gathered people in pain and their caregivers. We enlightened them about integrative care and the NPS, and we listened.

Those attendees, in person and via worldwide webcast, were loud and clear about their own barriers to care and they proposed solutions. Also, they gave us much input about the NPS and the sectors that should be represented at Part Two. The room was filled with passion and ideas. Using World Café, table hosts shared main concepts that came up in response to questions – and the whole room became engaged. Passion ran so hot attendees wrote on tables covered with news print. Many attendees expressed their ideas through art!

Watch Part One of the summit:

What has happened since the September 2017 conference?

Since our Summit: Part One, we’ve collected and analyzed the ample feedback from our attendees, which will play a major role in the content of Part Two. We’ve assembled a dynamite planning committee and we’re in the midst of convening our Design Team, the group that will be responsible for the summit’s program and making sure the right luminaries are in the room.

We’re in meetings with a partner (they choose to be anonymous at this time) who has considerable resources to scale up this ambitious effort and be sure our goal is met. For Grace is very excited about this development.

What can The Seated View readers do to help?

We encourage all people with pain and their caregivers to get involved with this effort as we can’t succeed without their crucial voices and passion. We encourage everyone with a stake in pain to make themselves familiar with the National Pain Strategy. We invite them to periodically visit For Grace’s website as we’ll be requesting pain folk to submit a short video in their home/clinical environment detailing their story, barriers to pain care and possible solutions. These videos will be edited to compile a short film that will be aired at Part Two of the Summit later this year.

We’re eager for everyone to learn more about integrative care and hope all will watch and participate in the media that will ramp up to our event. One special outreach my partner, John Garrett, and I are engaging in is being series regulars on The Mighty’s Facebook Live Chronic Illness page. Please join us with your questions and comments about the integrative care topic we’re discussing monthly (see details on our website)

When is Part Two of the Summit?

Our Summit: Part Two date is November 2nd, 2018 (the date may change) – and we hope everyone will tune in via our worldwide webcast on the For Grace website.

All images in this post credit: For Grace