Timothy R. Deer, Michael S. Leong and Albert L. Ray (eds.)Treatment of Chronic Pain by Integrative Approaches10.1007/978-1-4939-1821-8_21

21. Pain Care Beyond the Medical Practice Office: Utilizing Patient Advocacy, Education, and Support Organizations

William Rowe¹

(1)

American Pain Foundation, 201 N. Charles Street, Suite 710, Baltimore, 21201, MD, USA

William Rowe

Email: wrowe@painfoundation.org

Key Points

There are numerous, credible pain patient education, support, and advocacy organizations.
The medical practitioner has little time or experience to provide some of the critical assistance elements for their patients.
Pain patient education, support, and advocacy organizations can provide helpful support and education for pain patients that make a critical difference in their ability to successfully manage their pain.
Medical practitioners should include referrals to these organizations as standard treatment recommendations.

Why Utilize Patient Education and Advocacy Organizations?

Living with chronic pain is a total-person experience. Chronic pain affects all aspects of an individual’s life. The physical effects are clear—pain, sleep deprivation, and curtailed capacity to function. The emotional effects should also be clear—in most cases depression, sense of loss, fear and anxiety, frustration, and diminished hope and confidence. The social effects should also be clear—diminished social activities and contacts, strained marital, family and work relationships, and withdrawal. The effects on work and career should also be obvious—diminished capacity to perform, diminished ability to achieve career goals, possible loss, or end of work life.

These effects in turn contribute to spiraling the individual into a mixed state of pain, fear, withdrawal, anger, anxiety, frustration, hopelessness, and defeat. How does the medical practitioner deal with all of that in the 10, 15, or 20 min of the periodic office visit? Most people living with chronic pain need a great deal more than what can be provided in the typical office visit. The days and weeks are long when living with pain, and the need for information and support is continuous beyond the medical office visit. The physical-psychosocial impact of pain is well documented [1].

In addition referring to other practitioners who offer complementary therapies, one resource, often not utilized by medical practitioners, is encouraging patients to check out and connect to the multitude of helpful, credible patient education and support organizations. There are many organizations that provide comprehensive information and various support services. Some are defined by a particular pain disease, and some are general about pain in all of its forms. Most have comprehensive websites with information and resources that can assist the person with pain to manage their pain. They all also serve the very important function of connecting the person with pain to others who are living with pain. A common experience of people living with pain is isolation and a sense of being alone and the only person living this pain experience. These patient support sites offer a community of people and an inventory of information and resources to ameliorate the isolation.

There are many potential benefits for people with pain who consult and utilize patient education and support organizations. A short list would include: