Destigmatizing Pain

48The Declaration of Montréal, a document developed during the First International Pain Summit on September 3, 2010, states that access to pain management is a fundamental human right. Click here to read the full text of the document. The Declaration is endorsed by IASP and the International Pain Summit Steering Committee.  The first “Guiding Principle” in the Institute of Medicine’s report, Relieving Pain in America, published in June 2011 states that there is a “moral imperative to treat pain” and that all those in the healing professions have ethical duties and obligations to treat pain. Yet, chronic pain patients are treated as though their problems are “all in their head”, they are lazy or malingering and seeking drugs for illicit purposes.  Worse yet, research published in The Journal of Pain in February 2014 indicates that “an individual’s experience, perception, or anticipation of negative social reactions to their pain may become internalized and affect the self.”

In a variety of ways, PAINS has attempted to address this significant issue.  Those living with chronic pain serve on PAINS Steering Committee and are included in all aspects of our work.  One example, is that in Kansas City, where PAINS is located, a “Citizen/Leader Advisory Group” was established in June 2013.  This group meets regularly and has assisted PAINS in planning and development of grants and resources.

At PAINS’ 2nd Annual Meeting in Washington DC held at the end of January, Dr. Linda Harris and her colleagues at HHS presented their plans to develop an interactive video based on HHS’s Health Literate Care Model to educate primary care providers about bio-psychosocial approaches to pain management and the importance of developing clear communication and trusting relationships with those living with chronic pain. At this meeting PAINS Steering Committee designated “destigmatizing those living with chronic pain” as one of its top three strategic priorities.

PAINS Director, Myra Christopher, serves at the National Pain Strategy Task Force’s (NPSTF) Oversight Committee’s liaison to NPSTF’s Public Education and Communication Workgroup. PAINS participates in the Pain Care Forum’s IOM Workgroup and SPPAN’s Consumer Coalition which is working on this same problem.  PAINS efforts have been guided by people living with pain and communication/social marketing experts at Global Prairie Strategic Marketing and Communications firm.  PAINS is currently in conversation with the Center of Excellence in Healthcare Communication (CoEHC) at Kansas University to develop a research model for providing an evidence base for communication plans and strategies to change current perceptions of those living with chronic pain.  KU’s CoEHC focuses on traditionally under-served populations.  PAINS is a member of the CoEHC.

As PAINS expands its work with community and state-based initiatives, those with whom we collaborate must sign a “compact” which commits them to engaging those living with chronic pain and their family members in their efforts.   With help from experts, PAINS will develop an open-access  communication and health literacy tool kit to share with PAINS members and others engaged in efforts to destigmatize those living with chronic pain and to establish their right to appropriate treatment and respect.