2012: The Need People With No Computer Access and Without Skills

Transcription

1 Wisconsin ME & CFS Assn. Inc.

2 2012: THE NEED People sick with ME and CFS who lack computer access and /or skills to use a computer are isolated and uninformed. This is an at risk, underserved patient population. With a majority of patients misdiagnosed or undiagnosed, we believe that we have an ethical responsibility to provide patients equal access to medical and community services. HOPE for a higher quality of life grows from human contact. One Solution CO-OP for Health Services Mission: The CO-OP provides basic CFS information to a target population who, without Internet access, lack the knowledge to seek a proper diagnosis, better medical care, and knowledge about promising research. Goals To locate the large number of undiagnosed and misdiagnosed CFS patients To give patients with no Internet access good medical information To connect new patients with CFS to other CFS patients

3 Sick Every Day No Explanation? What it feels like: Generalized weakness/pain With sudden onset of a viral-like illness, physical /mental abilities decline. Simple physical and/or mental activity makes all symptoms worse. No explanation and no relief. Viral symptoms flu-like, swollen glands, sore throat, sinus congestion Neurological/Central nervous system sleep & digestive problems; extreme sensitivity to cold, heat, noise, lights, sound, smell Neurocognitive loss of former thinking and speaking skills To make matters worse, other people including doctors may not understand your illness. Some may not believe you. People with ME/CFS often lose their jobs, their homes, and their relationships with family. Our toll-free answering service can refer you to our network. We will send you a free package of up to date medical information. Why? WE CARE. Wisconsin Myalgic Encephalomyelitis & Chronic Fatigue Syndrome Assn. Inc. 501(c)(3), non-profit since

4 HOW IT WORKS KEY 1. Avenues for advertising the toll free number National 211 services informed Internet users go to the WI website - print a poster, the tear of phone number sheets and display in any community organization centers, shelters, public and private social services - request that WI send the materials for display Local newspapers, flyers print condensed Information on CO-OP for Services????

5 KEY 2 Toll free responder for CFS information The 24/7 TOLL- FREE information access number Healthy trained responders follow a script which includes limited information about CFS as well as questions to ask about computer access. This service is NOT for those who can access the materials on their own computer. The goal of the responder is to listen, to explain the service, and to secure a mailing address from the caller. The responder sends WI caller contact information to a dedicated address for CO-OP business only. WI sends out a prepared package that includes the 2012 IACFS Primer for Clinical Practitioners + enclosures about how to approach a doctor, resource pages*, and notes on chronic Lyme. Wisconsin will delete caller addresses to insure client confidentiality. In addition, at no time will the caller be asked for money or to join any group.

6 KEY 3 CFS Patient Contact Volunteers (March 2013 start up) A major CO-OP goal is to provide basic tools through our most valuable resource, human contact for people who are sick. The CO-OP will seek patients with CFS who want to participate. The primary job of the Patent Contact is to listen, not diagnose, not fix, not send out information or spend hours on the phone. Patient Contacts will have online copies of the information package contents. We will provide a script if a volunteer wants to use it to limit a call to 10 minutes. Once WI has a list of Patient contacts which could include a state group, the 24/7 service will ask callers about geographical location and give them the first name and phone number of a volunteer close by.

7 People with CFS create and operate most of the helpful CFS education, awareness, and advocacy organizations and groups. WE live with disabling illness. WE cope with disabling illness. WE survive with CFS. Wisconsin is sponsoring community education for those underserved and in need without computer access, know-how, or whose cognitive problems prevent computer use. In the long run, organizations and groups can build stronger communities to better our advocacy efforts on this journey for fundamental change.