Personal Accounts: Upside Down: The Consumer as Advisor to a Psychiatrist

Abstract

T alliance between Sacha and Maria came together rather tentatively. Sacha asked if he could be assigned a consumer advisor, an idea he had discovered in a curriculum for public psychiatry fellows. As a psychiatry fellow, he was searching for a better understanding of the mental health system as consumers experience it. Maria was a mental health consumer and peer support team leader who was looking for ways to help staff better relate to their clients. Neither knew what to expect. The first meeting almost did not happen. There was a mix-up in the location, and the encounter was abbreviated. The second meeting, too, suffered from confusion—this time about the date, and it had to be rescheduled. In retrospect, the pair wondered whether these false starts reflected each person’s unconscious ambivalence. In 2011 Maria had been working as a peer support worker for more than a decade. Before that she had been a consumer of mental health and addictions services for 15 years. She had lived through it all, dealing with voices, mood swings, addiction, homelessness, victimization, seclusion, restraint, and everything in between— up close and in person. Expert by experience, she had recently taken on a position as peer support team leader and had envisioned training clinical staff to help them work more effectively with her peer support colleagues. She questioned, however, whether anyone on staff wanted to listen. She imagined offering training to all 250 clinical staff at the mental health center where she and Sacha worked and having only one or two lonely souls turn up for the training. For Sacha, the fellowship program was a turning point. Never before had he had the opportunity to work in a system that embraced, at least in concept, the principles and values of recovery. All services at the mental health center sprang from a personcentered recovery plan. The use of seclusion and restraint had been radically reduced to near zero. Peerled focus groups and a director’s council had been recently established to provide greater opportunity for consumers to have input on the design and delivery of services. Yet the idea of a psychiatrist seeking counsel from a consumer was foreign. The rules were unwritten. Where should they meet? Maria did not have an office, and Sacha’s small office seemed not quite right, so the cafeteria was chosen for its neutrality and familiarity. How often should they meet? Monthly seemed sensible—not too frequent in case things fell flat and not too sporadic that a relationship would be impossible to grow. What should they talk about? They would have to sort that out as they went. The first task was, of course, to establish trust. Maria was aware of an assumption that this doctor would be like so many others from her past— seeing Maria as an object of study, too distant to understand or care about her as a human being. Sacha had implicit associations to work through too—that this African-Americanwoman in recovery from co-occurring disorders could be on time and on point somehow seemed questionable, despite all his consciously held convictions to the contrary. Fortunately, within one or two meetings an alliance formed that became the foundation for many candid and illuminating conversations. For Sacha, Maria’s experiences as a consumer and mentor to myriad clients and other peer support workers sounded like the tales of a traveler from a far-off place. She told him that clients feel looked down on by their treatment providers. Clients experience an insidious us-them dichotomy from the moment they enter the building and pass by the security guards and the clients-only metal detector. He heard that clients are always keenly aware of the threat of confinement, as if it were a dark cloud that floats behind the locked doors of the inpatient unit, through the hallways, and down the stairwell into every corner of the center. He heard that when clients find it difficult to trust the very people who are supposed to offer counsel and healing, they hold back. They avoid appointments and medications and telling their providers what is really going on, not because they lack insight or a sense of responsibility but because the center’s services can be unhelpful and even harmful at times. Sacha learned fromMaria that peer support workers suffer from a unique form of stigma. They feel devalued Dr. Agrawal is assistant professor with the Department of Psychiatry, University of Toronto, 862 Richmond St. West, Suite 201, Toronto, Ontario M6J 1C9, Canada (e-mail: sacha.agrawal@camh. ca). He is also clinical lecturer with the Department of Psychiatry, Yale University, New Haven, Connecticut. Ms. Edwards is the peer support team leader with the Connecticut Mental Health Center, New Haven. Jeffrey L. Geller, M.D., M.P.H., is editor of this column.