Schizophrenia: Out of the shadows with a new emphasis on recovery and individuals reaching their potential
Just a few decades ago, schizophrenia was known as a “kiss of death” diagnosis. The prevailing view was drained of all hope: individuals with this form of mental illness had no chance to recover.
“Even psychiatrists had a very hopeless view of people with schizophrenia,“ says Chris Summerville, CEO of the Schizophrenia Society of Canada (SSC). “They believed symptom reduction was possible with medication, but they didn’t see these individuals ever having a full, rewarding life.” Getting married, finding a job or living independently were all seen as out of reach, he says.
Schizophrenia is a complex illness in which people have difficulties in their thought processes leading to hallucinations, delusions, disordered thinking and unusual speech or behaviour – known as “psychotic symptoms.”
“We have learned that the earlier you identify early psychosis, and the earlier you intervene and provide treatment, the less likely the individual will develop full-blown schizophrenia. The result is you have better outcomes because if you can prevent future psychotic breaks, there will be less damage to the brain and its functions.”
The belief that people with schizophrenia could not recover certainly prevailed in Canada in 1979, but that year, the families of patients decided to tackle the stigma and discrimination that was backing their loved ones into a corner of hopelessness. Toronto physician Bill Jefferies and his wife, whose son was living with schizophrenia, founded SSC, and within a few years, provincial societies existed in all 10 provinces.
With their newfound voice, these families became passionate advocates for new attitudes and treatment approaches, as well as expanded mental health services. And they had allies: organizations and grassroots movements in Canada and other countries fought for change to improve outcomes for people experiencing all forms of mental illness and to position mental health as a crucial component of a person’s overall health.
Today, individuals and families with lived experience of schizophrenia have unprecedented optimism and hope, says Summerville. “We now understand that individuals can live beyond the limitations of their mental illness and lead a life of purpose and meaning. There’s greater focus on setting more positive treatment goals, with an eye to helping individuals with schizophrenia achieve recovery, reach their potential and be included in society.”
The growth of peer-support networks for families and individuals with mental illnesses and the strengthening of the person-centred, recovery-oriented model of treatment have helped drive positive change in mental health services. Advocacy groups have boosted their impact through collaboration as well; for example, an important voice is the Canadian Alliance on Mental Illness and Mental Health, a non-profit organization comprised of health care providers as well as organizations that represent individuals with lived experience of mental illness – including SSC.
Government stakeholders have helped fuel progress, including through the establishment of the Canadian Mental Health Commission in 2007. Summerville was an early member of the board of the Commission, which was recommended by a Senate Committee in its report called “Out of the Shadows at Last – Transforming Mental Health, Mental Illness and Addiction Services in Canada.”
New understanding of causes and successful treatment models for schizophrenia
Another positive factor is expanded scientific understanding of schizophrenia, Summerville says. “Schizophrenia is not a singular disease or illness. There’s no one gene responsible, and the causes are not limited to genetics – many factors are at play.”
This new knowledge has led to more mental health services that address a patient’s biomedical needs (i.e. medication), as well as their psychosocial, psychological, environmental and spiritual needs. New more holistic approaches recognize that medication to reduce symptoms remains important, he says, “… but recovery involves more than medication.”
Another important advancement in knowledge relates to “early psychosis.” For individuals with schizophrenia, most early episodes of psychosis occur when they are between the ages of 17 and 24.
“We have learned that the earlier you identify early psychosis, and the earlier you intervene and provide treatment, the less likely the individual will develop full-blown schizophrenia,” says Summerville. “The result is you have better outcomes because if you can prevent future psychotic breaks, there will be less damage to the brain and its functions.”
Today in Canada, the Canadian Consortium for Early Intervention in Psychosis along with 140 early psychosis clinics offer services for young people experiencing early psychosis. And there’s a growing awareness among teachers, guidance counsellors, parents and youth workers in faith organizations about the early signs and available resources.
Advocacy continues to achieve more progress
Despite the progress that has been made, SSC remains committed to pushing for further positive change.
“We have come a long way, but challenges remain, including many at the systemic level,” Summerville says. “As we know, mental illness generally and schizophrenia specifically still carry a lot of stigma, which leads to social exclusion. And the recovery philosophy isn’t front and centre. Moving forward requires more training for service providers so we can get that philosophy more widely entrenched in practice.”
The Schizophrenia Society is also advocating for a more integrated approach to treating mental illness and substance disorders, which often go hand in hand. Services are often delivered separately, which makes it difficult to address these complex intertwined illnesses. Other key recommendations from SSC include the following:
That the federal government enshrine national standards for access to mental health and addictions services through an amended Canada Health Act or the introduction of a new Mental Health and Substance Use Health Care Parity Act.
That the federal government increase its cash contribution to the provinces and territories by a minimum of $277.5-million a year to improve timely access to mental health services.
“Our mission is to continue to build a Canada where people living with early psychosis and schizophrenia achieve their potential,” Summerville says. “To build a mental health system that achieves our goals, it takes all of us coming together as a caring, supportive society.”
By the Numbers
1 in 5 Ratio of Canadians experiencing a mental illness in any given year
1 in 2 Ratio of Canadians who have – or have had – a mental illness by age 40
15 to 24 years old Age group most likely to experience mental illness and/or substance use disorders
2x as likely Likelihood a person with a mental illness has a concurrent substance use disorder (compared to general population)
3x as likely Likelihood that a person with a substance use disorder has a mental illness
SOURCE: CAMH www.camh.ca
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