Canada depends on the services of families who care for relatives stricken with Alzheimer's disease, traumatic brain injuries and other serious disorders. Sometimes, we even notice and celebrate their contributions which help reduce the cost of healthcare services. Some of this recognition just came from Barack Obama, since, in the US, November is National Caregivers Month.
Many of these families share the common problems arising from the enormous financial, social, physical, and psychological challenges that can accompany caregiving. But there are some stark differences for the families coping with psychotic disorders.
Although psychiatry no longer blames parents for the development of schizophrenia, too often family caregivers encounter a healthcare system that fails to welcome their involvement and avoids collaborating with them. Instead, these caregivers often confront a system steeped in practices that blame, undermine and exclude them. They struggle to establish working relationships with clinicians, such as social workers and counseling psychologists, who frequently have never had science-based training in understanding psychotic illnesses.
The Mental Health Commission of Canada recognized some of the needs of these family caregivers when, in the new national mental health strategy, it suggested that the mental health system should:
Increase the active involvement of people living with mental health problems and illnesses and their families in governance, accreditation, monitoring, and advisory bodies in the service system.
Even with this supportive message, family caregivers will face daunting obstacles as they try to bring the authentic voice of families into the mental health system. They will need the support of a national organization that reflects and advocates for their beliefs. Given that the voice of people with severe mental illnesses is often taken over by the psychiatric survivor movement, it's especially important that families' views be considered.
While working to greatly expand the kind of services provided by peer support workers, consumer/survivor groups consistently fail to advocate for services requiring other kinds of expertise. For instance, I have yet to see any of these groups push for the development of cognitive rehabilitation services that are urgently needed in order to better support recovery. Advocating for these services does require an acceptance that schizophrenia is a brain disorder, a position that is unacceptable to most of these groups.
In recent decades, families have built many strong provincial schizophrenia societies. Through them, they have had a huge impact on improving mental health services, and housing, educational, and vocational opportunities for people living with psychotic disorders. They have also worked to provide the public education about these disorders that continues to be missing from public health literacy campaigns. Their work, for instance, alerts parents, teachers, and inadequately trained mental health professionals to the early signs of psychosis, a topic glaringly absent from Canada's recent Mental Illness Awareness Week.
Provincially organized family caregivers actually had a national voice for over two decades after some parents brought provincial societies together to create the Schizophrenia Society of Canada (SSC). In recent years, however, the SSC's commitment to represent the perspectives of family caregivers has gradually faded. Ironically, in its alliance with the Recovery Movement, the SSC increasingly supports positions that, in fact, impede recovery in significant ways. One of these areas of concern relates to mental health legislation.
Some family caregivers now fear the SSC because currently it is advertising, below its mission statement, that it supports "Advocating for legislative change"
Since mental health legislation is currently a highly contentious issue, I requested, but haven't received clarification on exactly what is meant by this statement. References to "advocating for legislative change" are usually coded language for dismantling mental health acts, like the one in BC, that support both inpatient and outpatient mandated treatment.
Family caregivers are finding it increasingly difficult to help psychotic family members receive the treatment necessary to return them to sanity. That's why they strongly support the use of involuntary treatment when necessary. Most psychotic people have a neurobiologically based inability to understand that they are ill.
Many people with these disorders also support this position. Since none of the consumer/survivor organizations support the need for involuntary treatment, people who want to belong to a group working to protect their right to treatment have, in the past, been able to find a voice in the SSC.
Their right to treatment in the case of psychotic relapse is clearly jeopardized by another ominous addition that has just appeared on the SSC website. The SSC "Rays of Hope" manual has been rewritten. Though it still contains useful information, it has a new section on rehabilitation which copies verbatim the core principles of another organization, Psychosocial Rehabilitation (PSR) Canada. Among the otherwise commendable PSR positions is the controversial stance that:
All individuals have the right to make their own decisions, including decisions about the types of services and supports they receive.
PSR Canada does not recognize that severely psychotic people aren't in a position to make a rational decision about their need for medical treatment. Instead of endorsing PSR Canada's stances, the SSC could educate and lobby PSR Canada to change its position, since it puts gravely ill people at risk of being left to deteriorate.
Ideally, the SCC's CEO, Dr. Chris Summerville, would be rallying the membership to publicize the dangers of current campaigns to gut mental health legislation. Instead, in a recent article, Dr. Summerville (the doctorate, to clarify, is from an evangelical seminary) focuses on advice that will shock family caregivers, but affirm the beliefs of the psychiatric survivor movement. Families are told that they should avoid pathologizing their ill family member, look for dysfunction in their caregiving behaviour and examine unhealthy parts of their family history.
As National Family Caregivers month comes to a close, some caregivers have reason to celebrate as their concerns are receiving more attention than ever before. However, it's a precarious time for some of us. The organization that families caring for people with severe psychotic disorders had created has somehow slipped away from us.