Sep 29, 2021
Chronic pain is often overlooked, and when it comes to children, it is even more so. The continued neglect of children's pain affects the ability to truly evaluate the extent of the problem and challenges these kids and their families face.
The United States Pain Foundation, a pain advocacy organization, conducted a survey to assess how children with a pain diagnosis and their families experience chronic pain, what challenges and barriers they face and what they hope for in their pain care.
In this episode, I’m joined by Nicole Hemmenway, the current CEO of the US Pain Foundation and the Founder of the INvisible Project and Casey Cashman, Director of Fundraising and the Pediatric Pain Warrior Program part of the US Pain Foundation. They are strong advocates for pediatric pain, inspired by their own pain experiences. They discuss the findings of this survey, share their experiences with the pediatric pain patients and families that they support through their programs. They also share their hopes and some possible directions to address some of the challenges identified in this survey.
As healthcare professionals and clinicians, these findings are eye opening and a call for action to collectively invoke change in the care of pediatric chronic pain.
Takeaways In This Episode
Why Ms. Hemmenway and Ms. Cashman got involved in the pediatric pain work, US Pain Foundation and the Pediatric Pain Warrior program
The reason(s) that prompted this survey
Survey findings
How much focus should be on the number rating of the pain and how meaningful, helpful that is.
Valuable way to assess and inquire about chronic pain and a patient's progress
Psychological impact, extent of mental health issues including self-harm, suicidal thoughts, ideation and attempts amongst pediatric chronic pain patients
Burden of disease on the family - financial and psychosocial
What therapies do patients and families wish were emphasized more - (Hint: Medications were at the bottom of the wishlist!)
Barriers to chronic pain care
Psychological toll of having to evaluate whether you can afford a therapy and how it may be/ to address it.
Links
Connect with Nicole Hemmenway and Casey Cashman
US Pain Foundation-Pediatric Pain Report 2021
Pediatric Pain Warrior Support Groups
Register for upcoming Pediatric Pain Warrior Support Group
Clinicians’ Pain Evaluation Toolkit
About the Speakers
Currently serves as CEO of the U.S. Pain Foundation, and directs the INvisible Project, an online and print magazine that highlights the experiences of people living with pain. Nicole is also an author and motivational speaker. Her book, No, It Is NOT in My Head: The Journey of a Chronic Pain Survivor from Wheelchair to Marathon, details her struggles and triumphs in dealing with complex regional pain syndrome, a debilitating neurological disorder. In September 2015, Nicole was featured in a campaign in USA Today in recognition of her role as an advocate for those living with chronic pain; and in 2017, she received the Unsung Hero Award for her work in the pain community. Nicole lives in the Bay Area with her husband and three young sons.
Serves as the Director of Fundraising and the Pediatric Pain Warrior Program. Casey Cashman uses her voice to fight passionately for the rights of people with pain, especially children. She has lived most of her life with multiple, serious health conditions, including reflex sympathetic dystrophy/CRPS and Ehlers-Danlos syndrome, among others.
Over the years, she began to connect more with patient organizations and realized she had a passion for helping others like her. In 2015, she was featured as a participant in the INvisible Project, which led to her joining the U.S. Pain Foundation as a staff member.
Before U.S. Pain Foundation, Casey spent many years working in Human Resources. She brings this knowledge and experience to the table in her role as director of the Pediatric Pain Warriors Program, where she provides compassionate support to kids with pain and their families as they travel along their pain journeys.
Casey also spearheads U.S. Pain’s fundraising efforts, and has helped create various programs and collaborations designed to support the organization’s free programs and services
Her son, Tyler, is also a budding advocate for the pain community. In honor of his mom, he founded Points for Pain, a fundraising program that has raised more than $100,000 for pediatric patients.