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When the Mental Health System Doesn't Work

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Barbara Howard's* daughter is in the psychiatric unit at Vancouver General Hospital again.

It doesn't make sense since her daughter's schizoaffective disorder responds well to anti-psychotic medication; the problem is that she has never had any insight into her illness.

After years of chaos following the onset of her illness, the family finally realized their daughter might be able to be part of BC's Extended Release program, a program designed for situations just like this -- people with no insight into their illness, who keep recycling back into psychosis and into expensive acute psychiatric beds, and who are released with the stipulation that they go to their local mental health service provider to receive the anti-psychotic medications they need.

This program, which involved receiving an injectable anti-psychotic medication every two weeks, worked so well for the daughter for several years that she built up a full life and functioned comfortably. She was able to maintain the condo her parents bought for her, had a full-time job as a legal assistant, and made the art she loves.

Unfortunately, she deeply resented the meds she was sure she didn't need. For several years, the mental health review panel that looked at her annual request to be removed from the Extended Release program considered the six earlier hospitalizations that occurred when she had stopped taking medications, and rejected her request.

These review panels consist of a medical practitioner, a lawyer, and a member of the community and usually help ensure that ill people get the treatment they need. However, in June 2010, the beautiful, articulate young woman, with evidence of her high-functioning life, won her case to be removed from Extended Release. The strong warnings submitted from her parents and the treating psychiatrist were ignored. They had let the panel know that the daughter had never been willing to take oral medication.

Her desperate mother, a retired news reporter with considerable knowledge of the mental health system, persevered until she was able to find out the reasoning behind the panel's decision. The panel had decided that, since her parents are so supportive, they could help out if anything went wrong. Besides, they argued, the daughter had "presented well" and assured the panel that she planned to continue taking her medication.

And maybe the daughter did take her medication for a few weeks, but soon the old pattern re-emerged. Work became too difficult, and she stopped going. She saw the family, whose support she'd previously enjoyed, as having sinister plots, and she stopped speaking to them. It would have been hard to hear them anyway because her numerous voices once again seized control, keeping her locked in her apartment, gradually starving herself.

The family had no choice, since they didn't want their daughter to die, so they called in emergency services. A traumatic intervention with police and ambulance attendants ensued forcing their deeply paranoid daughter to do what she didn't want. Fortunately, after a few weeks in the hospital she was restabilized on the medications she still didn't understand she needed.

Their daughter returned to her condo and began to slowly rebuild the life that had fallen apart. The parents, furious at the ineptitude of the mental health system, could at least know that everyone involved had learned an important lesson, even if it had to be at their daughter's expense.

They were very surprised last year when they learned that, after a year of stability, her community mental health team had decided, without consulting them, to once again release their daughter from mandatory treatment.

Once again, the parents were helpless as they watched their daughter slowly descend into the horrors of her madness over a period of months. With this current hospitalization, however, the medication, as can happen, isn't producing the same effect. After nine weeks of being hospitalized, the daughter is still severely mentally ill. The parents now wonder where their daughter should live when she is eventually released. It's not clear that she'll be able to live independently. The parents fear that their daughter may not be able to work again. After the 2010 hospitalization, the daughter was unable to return to work and has been on disability benefits ever since; these were set up with the assistance of her parents.

Numerous groups of psychiatric-survivors and their supporters in academia adamantly oppose any involuntary treatment for people experiencing psychosis, arguing that people should always be free to choose whether or not they wish to be treated. They are working hard to spread their perspectives.

If they are successful, the Howard's daughter might not have a chance to resume the life her medications allowed her to live.

*Name changed