This month, Evelyn Corsini of the PainEDU team interviews Penney Cowan, the founder and Executive Director of the American Chronic Pain Association http://www.theacpa.org. At the American Pain Society Annual Meeting in April 2005 Penney became the first non-healthcare professional to receive the American Pain Society’s prestigious John and Emma Bonica Public Service Award.

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Questions

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Evelyn Corsini:

Why did you start the American Chronic Pain Association?

Penney Cowan: Twenty-six years ago, after six years of chronic pain, I had the opportunity to take part in a multidisciplinary pain management program. I entered the program believing that nothing would allow me to manage my pain. I went into the program as a non-functioning patient and I came out a functioning person.

Starting the ACPA was a way to help other people with pain know that they were not alone, to share what I had learned, and to help me maintain my wellness.

EC: What is the mission of the ACPA?

PC: The ACPA has two primary missions:

1. To facilitate peer support and education for individuals with chronic pain and their families, so that these individuals may live more fully in spite of their pain.
2. To raise awareness among the health care community, policy makers, and the public at large about issues of living with chronic pain.

EC: When do people with pain turn to the ACPA?

PC: We hear from people with pain, and their families, at many points in time, but often it is when they have reached "bottom" and don't feel they have any other place to go. People's expectation is that medical treatment will "fix" them, so after they have tried everything, usually many times, we are the last stop. Often their identity is as a "pain patient", and pain has become the logic for everything else that is going wrong in their life.

We have a toll free telephone number and people are usually surprised to hear a real human voice at the other end. And we listen, and we listen very carefully. We understand the issues. We have been where they are. The most important thing is that we don't ask them to defend their pain. By validating their feelings we take away their defenses.

We tell people we can't take their pain away but we can help them to help themselves to manage their pain. They are often so fearful. It is important to help them focus on their abilities, not their disabilities. We would like to get to people before they have fallen all of the way to the bottom, have stopped functioning, and are experiencing even more pain and discomfort because they become deconditioned by their inactivity and fear of increased pain.

EC: How many people use the ACPA and how does it respond to diverse needs?

PC: We hear from young people and old people, and often from family members. No one is immune to pain. We want to see people as individuals, and recognize that what is good for one person may not be good for another. Over the years as we have learned more and more about what people need to regain control and we have tried to respond to their needs.

We do a great deal of education, providing a variety of tools, workbooks and manuals. It is important to empower people with pain, to let them know that they have basic rights such as; the right to ask questions, be treated with respect, to say no and not feel guilty. We have been fortunate enough to be able to translate our material into many languages. Our web site is in English and Spanish. After receiving many calls from family members we developed a manual for them. And because we have heard from a number of young people we started "Growing Pains", a network for teenagers.

The day after our telephone number was published in a Sunday supplement magazine, we received an average of 300 telephone calls a day for a week. Our web site routinely gets 700,000 "hits" a month, and some months this has gone over one million.

EC: How does the ACPA assist self-help groups to start-up and run?

PC: We currently have over 400 self-help groups in the U.S. and in other countries. Groups are designed to provide peer support and teach coping skills. Only a person with pain can be a facilitator. It is important for our members to know that everyone in the group understands, including the facilitator.

The first group I started in 1980 is still meeting. Once established, a group may meet for one year or five years or ten years, they are all different. Some people come to the group, and becoming more involved in their normal activities, feel more energized, and then move on. Other people feel they have received help and continue to attend group to help others.

We provide a variety of practical tools and assistance to groups that are trying to start. We have developed a 100-page facilitator guide that covers how to develop and maintain a self-help group. We offer members a manual, From Patient to Person: First Steps, which contains the basic skills of pain management. ACPA offers a number of materials designed to help a person with pain understand what their role is in pain management as they take an active role in the recovery process. We offer relation tapes, videos, and even a calendar with suggested monthly topics for programs.

EC: What is Partners for Understanding Pain, and why did you start it?

PC: In 2002, the American Chronic Pain Association established a pain awareness campaign, Partners for Understanding Pain, declaring September as Pain Awareness Month. Partners for Understanding Pain is a consortium of leading community organizations whose goal is to raise the level of awareness about chronic, acute, and cancer pain, and their effect on our economy, social structure, and individuals and their families.

We hope to enlist our partners in the implementation of a multi-faceted awareness campaign to educate consumers who live with pain, the media, health care professionals, business organizations, and legislators. Now in its fourth year, there are more than 75 partners who have joined our efforts. To learn more you can visit www.understandingpain.org.

EC: What do you hope to achieve through the ACPA?

PC: At the American Chronic Pain Association we try to be the voice of the person with pain. Our primary goal is to help people with pain reduce their sense of suffering and improve the quality of life. The world needs to change its attitude towards people with pain and understand that they are simply people whose lives have been taken over by pain. It is our hope to reach out to as many people as possible and let them know they are not alone and there is a means to regain control of their live in spite of the pain.

EC: Thank you very much for taking the time to speak with us.