Advocacy and Support Using the Internet for Self-Care and Social Change WFMH World Congress Lahti Finland July 1997 Sylvia Caras For the last three years I've managed the Internet e mail discussion group MADNESS: User Voices in Public Mental Health. I'm going to show you what that discussion is like and what kind of care people say they want. There are two easy ways I know to find lots and lots of electronic resources of interest to people who experience mood swings, fear, voices and visions: Use a web browser to visit the MADNESS web page: URL: http://www.icomm.ca/madness or visit the MADNESS library: use e mail to listserv@sjuvm.stjohns.edu with only the message get madness psychrc I'm going to give you some background, tell you a little about the list I mind, a little about what people would like in service system design, and read you some brief anecdotes from users of some of the many lists. All Internet quotes are with permissions of the writers. (All anecdotes have been edited out of this printed version.) First though, what is a list? "A mailing list is a list of email addresses kept on one computer. A message directed to the list goes to that computer and this is automatically copied to everyone on the list." (Cherny, Lynn and Elizabeth Reba Weise, editors, wired_women: gender and new realities in cyberspace, Seal Press, 1996, p 116) Lists may be used to develop affinity community networks, to advocate for social change, to provide health and spiritual support, or to discuss breaking news. We use MADNESS: User Voices in Public Mental Health in all these ways. There has been an organized global user movement for 30 years. The very first self-help groups were to maintain and sustain. They were formed because there was no treatment but forced treatment. Quickly, as part of a global interest in human rights, the agenda became more political. Today, there is an international user movement, half the United States states have Offices of Consumer Affairs, and managed care companies are employing users. But in recent years, the political movement of people who use or have used mental health services has had no dependable global information source, no newsletter, no organization, no resource directory, no way to grow as a movement. 3 yrs ago I sent an electronic message to 17 people, people who experience mood swings, fear, voices and visions, which we abbreviate to People Who. In January, 1997, MADNESS had 233 subscribers from 12 countries (Argentina, Australia, Brazil, Canada, Great Britain, Israel, Namibia, Netherlands, New Zealand, Portugal and the United States) sending an average of 50 messages a day. Most subscribers post at least once. About a third of subscribers reply to the exit message; most sign off because of the volume of mail. We've developed an Areas of Agreement, accelerated inclusion of consumer oriented electronic resources on the Internet and on the U S Knowledge Exchange Network, and most recently, with other Internet groups, been heard by the U S government as we've spoken out against electric shock administered without consent. Last year's computers are inexpensive. Training is available from the disability world, through local colleges, and through computer special interest groups. You may arrange Internet access through a political jurisdiction, your organization, your community network. Phone costs are the most significant concern. There are two prevalent health care models, that of acute-care and that of prevention/stabilization/recovery Acute-care traige may create more acuity, may generate more medical costs, is short term crisis oriented. Rationing, restricting and limiting antagonizes users and heightens behavioral symptoms. For we with chronic disabilities, delay usually exacerbates. Immediate brief intervention, early issue identification, constant and consistent access to help at multiple entry points, calls returned without delay -- these and similar strategies reduce stress and keep the imbalance manageable. Denying and delaying attention increases costs. In other medicine, patients meet others with like concerns in the treater's waiting room. They make eye contact, start conversations, and use natural support. They dispel myths about what kind of people have the same problem as they. I think healing would advance if this were dispelled, by more group treatment, congenial public rooms in which to wait for therapists and chat with others waiting. In the meantime, the Internet is available 24 7, with tiny or no added costs for added use There are electronic support groups, free expert advice, chats, support, other care, structured tele- medicine, even patient psychiatrist video-conferencing. Aggressive community treatment, outpatient commitment, and other coercive measures are the least useful way to heal. Forcing more of the old tools that have failed is an expensive strategy that works less and less well. Nor should forced care be reimbursed by an insurer. Coercion is a social, legal, state political function and parity health care should never be forced on the consumer. Every person should have a legal Advance Directive, especially those whose judgment might sometimes cloud. The U S Robert Wood Johnson Foundation notes, "Patients who participate in decision-making about their care reap many benefits, including better outcomes and better compliance with the treatment plan. ... 'No amount of technically excellent care will produce optimal outcomes if patients are not actively engaged in managing disease, particularly chronic disease.'" (Advances, Robert Wood Johnson Foundation, Issue 3, 1996, p 8.) Whenever physical illness is separated from mental illness, an opportunity for discrimination and stereotype against users of mental health services is created. When speaking, writing, thinking, integrate behavioral health with other health to develop seamless health concepts and care. Recently there's been much attention directed to outcomes. I hope you believe in recovery. I think the care goal should be to provide the tools *to the patient* to prevent another crisis event and, failing that, the tools to manage episodic recurrence. Families and providers sometimes exceptionalize those of us who are public about our work for system change, saying we aren't really seriously ill, were mis-diagnosed, anything to support the model not of recovery but of sickness that needs constant services. Please look at we service users that you meet, and the ones who are presenting here, not as exceptions but as examples. Don't force us. Do include us. Make Internet access a reimbursable health care benefit. Tell another to Wire Up! C:\DATA\Lahti\oral.remarks.prn.wpd