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Columns   |    
Personal Accounts: Upside Down: The Consumer as Advisor to a Psychiatrist
Sacha Agrawal, M.Sc., M.D.; Maria Edwards
Psychiatric Services 2013; doi: 10.1176/appi.ps.640413
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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.

Copyright © American Psychiatric Association

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The 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 person-centered recovery plan. The use of seclusion and restraint had been radically reduced to near zero. Peer-led 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-American woman 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 from Maria that peer support workers suffer from a unique form of stigma. They feel devalued by their nonpeer colleagues on staff. They are often given menial work, because others on staff assume they cannot be trusted with the full responsibilities of the job. They are watched, as if they might shatter into pieces at any moment. They must walk the fine line between consumer and staff, joining with both groups to build bridges but fitting into neither.

For Maria, working with this psychiatrist was an opportunity to be heard and valued. She was asked to give voice to the consumer’s perspective on the mental health system. Finding that voice had been part of her recovery journey as a peer support worker and mentor to other peer support workers, and becoming an advisor to a psychiatrist underlined her recovery’s legitimacy and gave it strength. For Maria to think that her ideas could change the way this one psychiatrist would relate to his clients was compelling. To consider how this small change could amplify and ripple out to other teams and systems was exciting.

This consumer-provider relationship is unusual. First, it is intentionally upside down in terms of the usual power structure. Here the doctor seeks counsel from the consumer. This change in dynamics was powerfully felt by both parties. Second, the usual tight boundaries that govern clinical interactions are altered, and some restrictions are lifted. Freed from the usual responsibilities of gathering clinical data and ensuring that clinical goals are met, Sacha could focus on learning. He found it easier to truly hear Maria’s lived experience because he did not have to apply filters that often interfere with true understanding in the clinic and on the ward. (Is this person’s thinking grounded in reality? Is there a hidden agenda? Is this conversation part of a transactional pattern that is governing our interaction?) Maria also felt freer to be herself and to speak candidly, without having to manage the risks of being assessed and seen as ill, dangerous, or incompetent.

For Sacha, the relationship has provided a radical new perspective that he can use to better understand his patients’ experiences. No longer do words like “schizophrenic,” “guarded,” “undermedicated,” “noncompliant,” or “lacking insight” roll off the tongue or enter the ears without first triggering a long pause for reflection. Even subtle antirecovery language now comes across as jarring. After all, who would want to be understood as a “case” to be “managed”? And who would or should be satisfied with being “stable”? Looking back on their year-long relationship, Sacha came to understand that while the content of the conversations was undoubtedly instrumental in facilitating this change, the process itself was even more powerful. Being paired with a talented and articulate consumer who was well into her recovery journey created a space for Sacha to observe and challenge the mostly unconscious negative stereotypes he came to realize he held about his patients.

For Maria, the relationship has similarly challenged her negative stereotypes of treatment providers as uncaring and indifferent. The genuine interest of this one physician in her lived experience opened the mental door to the possibility that other clinicians might be genuinely interested, too. Fortunately, an opportunity soon came to test that idea, and the enthusiasm that this pair had for their work together led to an invitation for Maria and another peer support worker to speak at the center’s weekly physicians’ meeting. Entering a room full of psychiatrists, some of whom had treated Maria in the past, was intimidating. Yet, emboldened by her experience as an advisor to Sacha, Maria and her coworker were able to summon the courage to candidly share their stories and experiences. The doctors received their presentation warmly and responded in turn by seeking guidance on how to better connect with their clients.

Since that meeting, there have been many more consultations by center staff with peer support workers about individual clients and on centerwide initiatives. Thus the trust and understanding that emerged from Maria and Sacha’s conversations not only brought these two individuals closer and changed their thinking and practice in important ways, it also helped catalyze a noticeable change in the organization, helping to give peer support workers a more active role in treatment and service planning.

Ironically, perhaps, psychiatric training and practice are extremely vulnerable to a bias created by the fact that people using mental health services are typically at low points in their lives. Clinical experience thus tends to produce and perpetuate negative stereotypes about people recovering from mental illness and addiction. Rare is the opportunity for trainees and practitioners to be with individuals who have moved on with their lives or to hear about their recovery journeys. Yet instilling hope—a critical element of recovery-oriented care, according to consumers—is difficult to do effectively without seeing good outcomes firsthand. On the flipside, most clients have few opportunities to know providers outside clinical encounters, where power and history frequently block the formation of trust.

Stigma, it seems, runs both ways and powerfully so. Placing consumers in advisory roles to psychiatric trainees represents an opportunity to combat these biases and may ultimately enhance the mental health system’s ability to build trust with, support hope in, and offer respect to the people who use its services.




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