Bruce Springsteen and Talking to Mental Health Consumers in Alaska

one of the oldest Russian Orthodox churches in Alaska

one of the oldest Russian Orthodox churches in Alaska

Juneau   Before coming up to help organize the Mental Health Consumers Action Network (MCAN) in Alaska, I only had one request. I wanted to be able to meet and listen to men and women who had experience in the system to hear their issues and ideas for improvements. I wanted to talk to the consumers who would be the members of MCAN.

In my first meeting, about ten of us gathered around a table at Polaris House in Juneau. Polaris House is sort of a mutual support center providing a “safe” space for “people whose lives have been severely disrupted because of their mental illness,” as one of their brochures described their work.

I had heard from state officials about so-called “gaps” in the system, but that was meaningless without hearing what people facing the gaps felt, so once I started asking questions it wasn’t long before everyone around the table weighed in with their views about what needed to be done. This was a language and jargon I didn’t know. People talked articulately about their own situations, bipolar with schizophrenia rising, sounding almost like an astrology prediction or various kinds or mania or disorders in this way or that, but all of them with medication and treatment that were as articulate and powerful – and invisible – as anyone you might pass on the street.

another view of one of the oldest Russian Orthodox churches in Alaska

another view of one of the oldest Russian Orthodox churches in Alaska

One woman spoke of the huge value of something she called a “respite center,” which seemed to be space or half-way house before having to be hospitalized in a crisis. Such centers served as a place someone could go to get right before it was too late. The woman credited the center and her several visits there with allowing her to keep a job as a state employee for more than 20 years even while trying to do her best to manage her illness. Her comments brought hearty agreement. Tragically, this program seems to have been shut down, and worse others complained that the state’s crisis intervention folks used criteria that often blocked people from the few hospital beds that existed, giving them now no place to go, essentially until they got worse.

Other issues came fast and furious, large and small. Mental illness is not a visible disability, and highly treatable, yet there is a stigma attached to it and a public fear in dealing with it. People talked about being fired from jobs once employers found that they had mental health issues. One man counted three times in Juneau alone. Of course this is illegal under the Americans with Disabilities Act (ADA), but without an organization of consumers, employers will get away with this until stopped. Others talked about being denied housing or evicted from housing once their situation was known. Of course the Fair Housing Act bans this, but once again without an organization saying, NO, that’s just the way things go. The meeting was an education for me, and an endorsement of what MCAN was seeking to do.

Alaskan Brown Bear in the lobby of Alaska State Offices Building

Alaskan Brown Bear in the lobby of Alaska State Offices Building

Coincidentally in Juneau I had been reading Bruce Springsteen’s autobiography, Born to Run, while here. The main theme of course is the hard, personal road he followed to become a rock star hero, but the sub-theme that was surprising was Springsteen’s own fight to find stability with his mental health issues. He was clear that he only made it with 30 years of constant therapy and the ability to reach out when he hit the wall and find doctors that were able to perform miracles for him with psycho-pharmaceuticals. He had the money and support to make it, but his issues were such that it was still startling to hear him write off whole clumps of years in his sixties. Yes, not weeks or months, but years.

Too many want to make the homeless man or woman the face for mental illness, but I’d like to be in the crowd hollering, Bruce! And, that’s not crazy. A brochure I picked up from Polaris, rattled off the stats: 46% of Americans will experience mental illness in their lives; 26% will face it in any given year; and 5.8% of Americans will face a “severe” crisis annually. Springsteen also represents because Polaris cites its experience that only a quarter of one-percent (.25%) of the people they serve need housing. This is a big constituency even in the small population of Alaska with an estimated 24000 adults with serious mental illness in the state, and a life expectancy of 25 years less than the general population.

MCAN has its work cut out for it as a membership-based organization, but the issues are there, people are angry, and change is needed, whether we’re talking about on the stage of rock concerts, the house next door, the co-worker in the cubicle down the hall, or on the streets of Juneau.

Totem Pole in the Lobby of Alaska State Offices Building

Totem Pole in the Lobby of Alaska State Offices Building

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Please enjoy Bruce Springsteen’s We Take Care of Our Own. Thanks to KABF.

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Medical Error is Literally Killing Us

MPP0435770New Orleans     When you go into a hospital or under a doctor’s care, you are literally putting your life in someone else’s hands.  When you’re sick and walk into a hospital, most of us would like to feel better crossing the door, finally we are someplace where someone will know what to do and take care of us.

            It’s a comforting thought, but talking to James Lieber about his recent book, Killer Care:  How Medical Error Became America’s Third Largest Cause of Death, and What Can Be Done About It, on Wade’s World strips away any allusion you might enjoy on that score.  The book subtitle has to almost be the longest ever, but it makes the main point quickly.  After cancer and heart disease, medical error is our largest killer in the United States.        

            We’ve all heard about the mix-ups in hospitals where they operate on the wrong arm or amputate the wrong leg.  Maybe you can’t escape human error, but how about reading the charts and using a marks-a-lot or something.  Lieber says they have made huge progress on this score, but then he remarked that “only” 30 patients a week continued to be wrong footed in this way.   As he talked, I quickly did the math, that’s more than 1500 deaths a year.  Damn!

            By now we’ve all heard the less than cheery warning to be careful going into a hospital because you can get sicker in there than on the outside.  Largely they are talking about the various forms of staph infections that are part of a constant guerrilla war against patients in hospitals.  All of which according to Lieber should be classified as medical error and all of which can be fairly easily corrected, though it takes accountability and care.  Lieber argues that if the federal government’s Center for Disease Control recommendations were strictly followed, this could be shelved permanently, but, sadly, these are just guidelines rather than required or “standard” practice.  Meanwhile he puts this number at 100,000 deaths per year.

            When not writing Killer Care or pieces for Social Policy which excerpts a section in the current issue, Lieber is a civil rights lawyer based in Pittsburgh.  I asked him why there’s not more litigation on medical error.  I would have thought there would be lines miles long in front of courthouses around the country.  Part of the problem is the difficulty of proving malpractice if such doctors and hospitals followed “standard” practice, which may be why good solid guidelines are not regulations.  Lieber did remind everyone that they have the right when they go into a hospital to demand to see the history of the room which would allow them to find out if there has been a backlog of infection there so that they can move elsewhere.  That’s worth remembering!

            Some states have stepped up, and Lieber claimed some of the best protections are in Pennsylvania.  That’s a long way for most of us to travel, but in the meantime, it might be worth reading Killer Care and pushing back on doctors and hospitals to “do no harm.”

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