As we prepared for our regular monthly Board meeting, a casually dressed middle-aged man entered the room. I didn’t recognize him. I was struck by the shirt he was wearing, it was hard not to be. Imagine bright red flames across the front of the shirt with the words, “Advocate from Hell” emblazoned above. Wow, I thought, this is going to be a fun meeting!
I’ve written about getting off to a good start if you’re considering making radical changes in your local mental health system of care. I’ve discussed the importance of a solid foundation of likeminded individuals, the need for a common set of beliefs, assumptions and goals. Another critical element for our efforts in Ashland has been the emphasis on listening to those people most directly affected by the current system of care, i.e., “clients.” There’s no better group of people to tell you what needs changing than those currently interacting with that system.
Which leads me back to that gentleman with the “hellish” shirt. After the meeting was over Pat introduced himself as an advocate, a consumer/survivor from Ashland recently returned from out of State. Pat wanted to be involved with what we were doing and the subsequent years have shown the wisdom of welcoming him.
Designing mechanisms to gather input from persons who have had past or present experience with your respective mental health system is a key step in bringing about reform efforts. We’ve used opened ended surveys, interviews and focus groups to try and gather this information. We’ve been fortunate to have outspoken individuals who want to share their experiences, but more importantly, their ideas for what changes need to occur to make the system “work” for those it is intended to help. Finally, we’ve worked with our local peer or “consumer operated agency” as it’s defined in Ohio for their thoughts and ideas. In one way or another this is what they told us:
• We want to be treated with dignity and respect;
• We want to be given accurate and complete information about what “professionals” think about our situation and what solutions they think could be helpful;
• We want these “professionals” to listen to our own ideas of what we think is helpful/useful;
• We want ALL staff of the agency to be welcoming and pleasant, to create an atmosphere of safety and where healing can take place;
• We would like a say in who is “assigned” as our case manager or counselor, etc.; and
• We would like to be able to receive services as quickly as possible
Hardly extreme or unreasonable requests. We were most surprised by the requests that were not being made. No one mentioned they wanted more honesty by professionals when discussing the causes of mental illness or the course of the diagnosis. No one really questioned the diagnostic system being used to label them. Some concerns were expressed about medications but primarily those concerns were that they couldn’t get the medications they wanted or couldn’t get them quick enough.
What if the chemical imbalance myth, the need for medications to bring “balance” and life-long course narratives had taken such hold that the majority of service users weren’t questioning them? What kind of “damage” might we do if we started to present alternative narratives wildly different to those believed to be true? This discussion led our Board to support a yearly Recovery Conference called the Respect, Success, Value and Purpose (RSVP) conference. The primary purpose is to invite “consumers” of mental health services both present and past to hear alternative views of mental illness and treatment. September 2012 will mark the fifth annual conference. We’re expecting over 300 attendees from many counties in the State. While the primary invites are for consumers, a fair number of mental health professionals and other community partners are encouraged to attend. The conference is thought to be a productive vehicle to change narratives many consumers have based on years of misinformation from professional helpers.
When you are going about planning for reform efforts in your own area, we encourage you not to overlook the opinions, experiences and ideas of those closest to the area under reform. Don’t assume you know what their feedback will be and once you have it, evaluate carefully what your next steps will be.
-Next Time: Taking the ‘President’s New Freedom Commission on Mental Health’ seriously
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.