XII World Congress of Psychiatry --Partnership for Mental Health
August 2002, Yokohama, Japan
|Active, sustainable partnerships
psychiatrists and consumers
|Sylvia Caras, PhD|
Specific to partnerships:
For advocacy to be truly effective, it must represent the aspirations and experiences of the people it seeks to protect. So too with partnerships which must have the goals of the patient. Partnerships need to be open, inclusive and representative of the interests of people with disabilities, including the most marginalized sectors of the disability community. Partnerships must be reciprocal and horizontal. Persons with disabilities must be the principal participants drafting agreements, at all stages of the negotiation process. The participation of people with disabilities in decisions that concern them, and in bodies that are relevant to their lives, is a fundamental principle that must be reflected in partnerships.
Start small, involve the community, provide adequate resources, be clear about the goal and how you will know when it is met.
Avoid tokenism by ensuring meaningful and significant inclusion of the direct users of services.
Service users exist in a context that includes our community and social network and may include our family. Cooperate with this context to strengthen our ordinary place within it.
Involve consumers and survivors in meaningful and significant ways in all aspects of what affects them, from public education, policy planning, and prevention to their own emergence as self-determining people. Involve carers when they represent consumers who can not represent themselves.
People with psychiatric disabilities may need to learn the generally agreed expectations for partnerships and may need some accommodations for deficits in cognitive skills.
The Community Care Notebook: A Practical Guide to Health Partnerships http://www.ahaonlinestore.com
In order to focus on wellness, people with psychiatric disabilities must first address their basic needs for safety and belonging.
People need meaningful activity for pay or service, their own stable shelter, some income left after rent and medication. People without jobs need employment. People without housing need homes.
Especially in the developed world, housing is fundamental and subsidies must not be used to leverage treatment acceptance and compliance.
Socializing newly diagnosed patients into "the mentally ill" affects self-esteem, wellness, sense of personal control, internalized shame and self-hatred. This includes the confessional requirement of admitting to one's diagnosis. You know about self-fulfilling prophecies. The expectation of recovery is the biggest predictor of recovery.
Harding says that people with schizophrenia can reclaim their lives -- and in fact, given the proper care, are likely to do so. "If people are treated as if they aren't going to get better, they lose hope and feel like they have no control in their life. Basically, they're stripped of the things that will help them get better." Research has shown that schizophrenia is a prolonged, but not a chronic disorder. "People tend to be very sick at the onset, but the symptoms taper off gradually."
Embed the concept of wellness in all policies and respect direct service users by including their primary voice in meaningful and significant ways in all aspects of policy setting, from planning and design through delivery and implementation to monitoring and evaluation.
Use strengths-based interactions and treat in ways that do not inhibit or limit existing strengths. Treatment must include ongoing medical work-ups and rule-outs. Also rule-out sexual abuse and trauma reactions. Oversee this yourselves. Complementary medicine and holistic alternatives must be part of any services package. Create service coordination instead of discontinuity. Anecdote and experience is evidence. So called "evidence-based" interventions cannot select only one kind of evidence to validate themselves as "scientific" while not valuing less commercial interventions.
People diagnosed with mental illnesses are citizens of their communities, with the full rights and responsibilities of all other citizens.
Consider the impact of force: forced medication, forced electroshock, forced magnetic therapies, ... destroy any possibility of therapeutic alliance. Outpatient commitment undermines the trusting relationships necessary for wellness. Treatment without full and informed consent is only justified when a patient is not conscious, is a child, is legally not competent.
Defend us. You know that mental illness does not cause violence. The root causes of violence in our society must be addressed; don't stay silent when people diagnosed with mental illnesses are scapegoated.
Meet the person where the person is. Find the grains of truth in what you might dismiss as delusion. Respect individualized coping strategies.
Use respectful person-first language, embed wellness, rebut prejudicial media, share information, provide support for consumer-direction, self-determination, wellness and peer networking.
Sylvia Caras, PhD