Learning to cope with mental illness


They came one day, out of the blue, in the middle of the night. The voices inside Larissa Ho’s head were loud, belligerent and screamed at each other.

Ho, 11 at that time, assumed the angry cacophony of incoherent babble playing in a continuous loop was the work of evil spirits punishing her.

That first time, a frightened Ho ran into her parents’ room and begged them to drive the scary demons away. Her father soothed her and told her she was experiencing a nightmare and that it would all be OK. Except it wasn’t. Ho soon stopped asking for help when she realized no one else could hear them.

“The voices would pound inside my head so much so that I would get a headache afterwards,” said Ho.

“I could not escape them. I would be immobilized. They would be screaming incomprehensibly drowning each other out. It was a very terrifying experience.”

As the voices continued their nightly torment, slowly, all traces of the bright and cheerful student began to disappear. In her place was a catatonic, unfocused and listless teenager who cried and slept a lot.

Then, after a year, they stopped bothering her. But Ho’s mental health took a turn for the worst. She experienced severe hair loss, weight gain, was unfocused, angry and fatigued.

A grim picture

According to Peel Children’s Centre (PCC), a lead agency delivering mental health services and programs in Peel, 1 in 5 children and youth (approximately 88,000 young people) up to age 24 living in Peel region have a diagnosable mental health challenge. These include disruptive behavioural disorders (e.g. defiance; bullying), anxiety disorders, Attention Deficit/Hyperactivity Disorder (ADHD) and mood disorders (e.g. depression; bipolar disorder). The situation is so dire, only 10 per cent will get the treatment and help they need, in part becuase existing services are inadequate as Peel receives just $21.2 million for child and youth mental services whereas Toronto receives six times that amount.

It was an alert teacher at Ho’s high school – four years later – that noticed the symptoms. The teacher suggested Ho’s parents seek medical help for their daughter. The psychiatrist recommended the 15-year-old be hospitalized immediately.

A frightened and bewildered Ho remembers a nurse taking her to the basement of the Brampton Civic Hospital (BCH) to the adolescent mental health unit. The diagnosis was schizophrenia, a chronic illness whose symptoms include paranoia, disorganized thinking, lack of pleasure in day-to-day life and more. This was the first of Ho’s three hospitalizations. That initial diagnosis would be later amended to depression with psychotic features.

“I didn’t want the diagnosis of mental illness,” Ho said, adding she was overcome by acute self-stigma. “I was still holding on to hope that my illness was a phase and it would pass. To me, hospitals were where they put people that are crazy.”

Ho’s official foray into Peel’s fragmented and confusing mental health system was challenging and often fraught with desperation and hopelessness. On her first night at BCH she was prescribed Risperidone, an anti-psychotic medicine. The voices that had become mute resurfaced again.

Hope is a beacon, but where’s the help?

A report crafted by United Way of Peel Region, mapping the mental health system in Peel, says some 260,000 Peel residents – both adults and children – will be affected by mental health disorder at some point in their lives.

Patients and families described the region’s current mental health system as “an uncoordinated and un-integrated mess” that was complex and unresponsive to individuals with mental illness. The services, it would appear, are groaning under the weight of unprecedented demand and exponentially high population growth.

“The report for us reinforced the gravity of the situation in terms of the lack of coordination of services from both institutional care and community based services,” said Shelley White, president and CEO, UW-Peel. She indicated the challenges are particularly significant for youth between the ages of 16-24, especially when it came to prevention, treatment and counselling.

“There are huge gaps and wait lists for services. For instance, people are referred to programs upon their release from the hospital, but the wait lists are six months or greater. Also, given our population and its diversity, the services are inadequate to meet the needs of the specific communities.”

The United Way report highlights the current gaps and duplications, and notes when the eco-system of mental health care is difficult to navigate and understand the most vulnerable citizens, such as those living in poverty, newcomers and others with complex needs, are likely to fall through the cracks.

Based on its findings, the report made a set of recommendations that includes a call to action for: service providers, health and government agencies and other social services; better coordination and integration between agencies and more investment in resources.

“We heard over and over (when doing our research strategy) from various stakeholders that the stigma associated with mental illness as well as lack of community based mental services was a huge gap,” said White when asked why the report was commissioned. “United Way (Peel Region) is committed to reducing poverty in our community and we know that with one in five people experiencing mental illness at some point, this was leaving them extremely vulnerable to falling into poverty or living a life of poverty.”

An advisory committee of representatives from local LHINs, family physicians, immigrant groups and others, gave their inputs.

An important point that emerged during discussions with key stakeholders was the frustration experienced by family physicians who told the report’s authors that they were seeing more and more individuals with mental illness in their clinics, but a critical lack of resources in Peel meant the patients had to cool their heels waiting for help while their illness continued to escalate.

Based on the recommendations, UW- Peel Region said it plans to introduce community hubs whose focus will be to provide holistic mental health services to residents. Timeline to launch the first of many is 12 to 18 months.

Also, the agency will invest $2.5 million in 20 organizations that provide mental health services, White said.

The broken link: Children to adult mental services

Like most individuals, Ho assumed that with an official diagnosis in hand she would have access to continuous and seamless help. But that was not the case. The Mississauga resident was referred to Centre for Addiction and Mental Health’s First Episode Assessment Clinic Peel for follow-up.

After few years, Ho was told she would have to find an alternative program as she had overstayed the three-year period allocated for her.

Access to psychiatrists and other professionals was difficult. When the appointments took place the visits were short and unfulfilling, according to Ho.

“When you are a patient at the hospital, you only get to see the psychiatrist for five minutes and they throw these questions at you and depending on what your answers are they deliver their diagnosis and prescribe medication,” said Ho.

“You have to tell your story dozens of times to the nurses and the doctors during every visit because no one talks with each other. I always felt bad going to see the psychiatrists because I knew it wouldn’t accomplish anything. I felt disrespected by them because I was mentally ill.”

Ho, 24, a fifth year student at University of Toronto, Mississauga, has penned a book, Becoming Silver Girl, a candid chronicle of her mental health journey.

Despite her ordeal, Ho wants her story to be one of hope and recovery and suggests patients become their own advocate and not let the darkness of mental health overwhelm them.

Funding equity for Peel: A pipe dream

There are more than 450 agencies in Ontario including eight in Peel that deliver mental health services and programs for children and youth. The province’s $21.2 million allocation for child and youth mental health services is inadequate to meet the existing demand, says Humphrey Mitchell, CEO, Peel Children’s Centre (PCC).

The reality is that even though every attempt is made to ensure prompt help for children and youth with mental illness, there’s no sustained and long-term plan available to them because of the funding shortage.

The mental health system landscape in Peel desperately needs more social workers, case managers, child and youth counsellors, people to do in-home assessment and build these around the strategic use of some of the more expensive resources such as psychiatry and psychology, Mitchell said.

“We (PCC and other agencies) have a full continuum of services, but we don’t have the depth in terms of the service delivery,” he said. “We need to build that.”

Moving forward, PCC will ensure the delivery and service models of all the agencies in the region become efficient. To that end, it will collaborate with doctors, other agencies, school boards and Local Health Integrated Networks (LHINs) to ensure scarce funding that’s available is used well.

 “The landscape is positioned for a dramatic change,” Mitchell explained, adding the province’s 10-year strategy Moving on Mental Health was tweaked to make the existing system more streamlined and efficient. “What you had historically was government officials overseeing child and youth mental health, but they did not understand the business. As the lead agency (PCC) will be overseeing the business and allocating ministry approved dollars to different organizations.”

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