Breaking down barriers to mental healthcare

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An estimated 1.2 million Canadian children and youth are affected by mental illness—yet less than 20 per cent will receive treatment.

Laura Kent* has worked for the same Toronto-based company for 28 years. She speaks in earnest, and you can sense she’s smiling when she answers the phone. At work, she signs off her emails with an encouraging “Cheers … Make it a great day.” Outside the office, for the last 13 years, she’s helped her son make it through his days. He’s an addict, and earlier this year, he was suicidal.

Kent knew her son needed professional help when he was five years old. That’s when he was suspended from kindergarten. Ever since, she and her son have worked with school counselors, teachers, nurses, social workers, pediatricians, psychiatrists, psychologists, non-profit organizations, hospitals and private facilities. Often waiting for months to be seen, some programs seemed to help; others, not at all. He was diagnosed with a learning disability in elementary school, and by his teens he was self-medicating. This year, the now 18-year-old had his first conflicts with the law. When he called his mother from the police station on his first offence, he told her he wanted to end his life.

“After all those years of therapy and programs, my kid never said something like this,” says Kent. Once informed, the Toronto court immediately set him up with addiction and mental health professionals eager to support him. He received targeted care he had not experienced up until then. It was a relief, Kent said, though she knew it was only a temporary measure.

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Kimberley Moran is another Toronto-based mother whose daughter only received suitable medical care when she became suicidal. Moran told CBC Radio’s Metro Morning in Toronto that three years ago her daughter revealed she had a sadness that wasn’t going away. Moran felt perplexed because her daughter was a good student who had lots of friends. Their family doctor referred the then 11-year-old to a hospital-based children’s mental health service. But with wait times from nine to 12 months, Moran looked for other options in the community. As time passed without connection to the right program, Moran’s daughter grew so ill her life was at risk. It was only when she was admitted to an acute-care hospital that she got the right care and her condition improved. Over the next year she received treatment in a community-based children’s mental health centre, in residential treatment, at home and a day treatment program. She returned to school two years later, where Moran says she is doing great. Even still, Moran believes her daughter’s experience did not have to unfold that way.

“The reality is, we got into those services because she became suicidal. Really we need to intervene much earlier,” says Moran, who is the new president of Children’s Mental Health Ontario. “I think if we weren’t stuck on wait lists, then we wouldn’t have ended up in the emergency room and such intensive and expensive services wouldn’t have been necessary. Primary care physicians, hospitals and community agencies must coordinate their efforts to create a seamless path for children and their families.”

Promising new program at Sunnybrook

A new program at Sunnybrook Health Sciences Centre in Toronto is working to help families avoid scenarios like those experienced by Kent and Moran’s children. Launched earlier this year, the Family Navigation Project offers a call-in and email program that partners clinically-trained health professionals, known as “navigators”, with families of youth who are experiencing mental health and addictions. The youth’s families and caregivers are connected with a professional who will guide them through the complex mental health-care system, and direct them to the right services, at the right time.

“Often, the time spent talking to one of our navigators at intake is the most time parents have spent speaking with a professional about what is going on with their child,” says Dr. Anthony Levitt, medical director and co-founder of the new Family Navigation Project.

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Parents or caregivers call or email in, and arrange a meeting with the navigator over the phone. The navigator encourages the parent to share information they feel comfortable sharing, and that information is summarized and confidentially presented to the Family Navigation Project team. The team plans a course of action and a list of options they think match the needs of the youth and the family. In all cases, the team seeks the youth’s consent to review former psychiatric evaluations, past assessments, discharge notes and other relevant background, if they are available, before making a recommendation. When relevant, the navigators provide education about mental illness and/or addiction to the family, about how the mental health and addiction system works and about what’s reasonable to expect.

“It’s been a godsend,” says Kent, who learned of the program this summer after a colleague asked her to sponsor RBC’s RunForKids, which fundraises for the project. She and her son have since been paired with addiction and youth specialists committed to long-term support.  “You know what I like the best?” says Kent. “When I was on the phone with one of the staff, I felt like she was hugging me. It felt like she really got in the boat with me. And when things don’t work, they say, `Let’s go back to the table.’  They follow up. I don’t feel alone.”

Dr. Levitt’s team has navigated over 350 families in the first ten months. “What we’ve discovered, quite surprisingly, is that the system is varied and diverse and there is almost always a place for your child,” says Dr. Levitt.The program welcomes youth between 13 and 26 with the median age around 18 – around the same age when mental illness often presents.

While 90 per cent of people who die by suicide have a mental disorder and/or addiction, suicidal behavior isn’t always a part of mental illness. A vast minority of people living with a mental condition have no suicidal thoughts or behavior.

Whatever the case or situation, Dr. Levitt’s navigators are there to manage what can be a very distressing time for families. ”Families with a youth in a mental health or addiction issue are often in turmoil. Our team helps turn down the emotional temperature in the home,” says Dr. Levitt. “In one case, it took twelve different facilities and people to talk to before finding the right way. We try to let families know that we believe there is an answer in the system somewhere. We call it `compassionate persistence’.”

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Dr. Levitt says he’s received calls from health administrators across the country and internationally who are also looking to find a process like Family Navigation to better provide timely and effective help in the complex area of mental illness and addictions care.

Suicide is prevalent and complex

In Canada, and around the world, suicide is the second leading cause of death in youth (aged 15 to 24) after accidents. In most western countries, youth suicide is most closely related to mental disorders – often depression. According to a 2013 study, an estimated 1.2 million Canadian children and youth are affected by mental illness—yet less than 20 per cent will receive treatment. Roughly 15 per cent of young people report thinking about attempting suicide.

Research indicates actual and attempted suicides differentiate among age groups, ethnicities, genders, those exposed to trauma, and socioeconomic backgrounds. And the high rates among Canada’s First Nations and LGBTI youth are particularly concerning. But no community or region is unaffected. As the World Health Organization wrote in a recent report, every suicide is a tragedy, and its impact on families, friends and communities is far-reaching. And it’s all the more challenging because there is not one exact reason.

As Dr. Mark Sinyor, staff psychiatrist at Sunnybrook says, people often seem to be after the “one” root cause of suicide – the thing that made it happen. But suicide in youth, as in adults, is the result of a complex interplay of several factors including mental illness such as depression, an anxiety disorder, psychosis, substance misuse, stressful life events and a person’s own coping mechanisms. Dr. Szatmari, chief of the Child and Youth Mental Health Collaborative at SickKids, Centre for Addiction and Mental Health (CAMH) and the University of Toronto, adds that impulsivity is a large risk factor. Because of these and other factors, taboo and stigma still persist and many young people do not seek help or aren’t heard when they do. Making it all the more tragic, says Sinyor, because all of these things can get better with treatment.

In recent years, Canadian businesses and community leaders have attempted to diminish the stigma and break the silence. A once parched field now overflows with suicide and mental health awareness campaigns (Side Bar 1: Campaigns Trigger Helpful Talk on Moods, Stress and Suicide). As a result, resources (Side Bar 2: Online Resources) are widely available, stigma about mental disorders may be diminishing, and more people are talking.

But according to Dr. Stan Kutcher, Dalhousie University psychiatrist and Sun Life Financial Chair in Adolescent Mental Health, Canada needs more than talk to prevent suicides and suicide attempts.  “Awareness without knowledge and understanding is frankly not very useful,” says Dr. Kutcher. Other youth mental health specialists agree.

For Canada to truly address and alleviate youth suicide and suicide attempts, we need more valid and helpful research, clearly demonstrating what works to prevent suicide and what does not work; early intervention programs for youth and parents; and skill building and healthier environments for children and young people to prevent mental distress from escalating to life-threatening levels.

Researching youth and suicide

Canada’s Social Sciences and Humanities Research Council (SSHRC) and the Canadian Institutes of Health Research (CIHR) are funding a wide breadth of suicide research. Since 2001, the CIHR funded around $32 million for research on suicide among all age groups. The SSHRC could not confirm its exact figure before Hospital News went to print, but its online database states at least $1.68 million has been dedicated to suicide and youth research since 2003.

One recipient of a CIHR grant is Researcher Anne Rhodes PhD at the Suicide Studies Research Unit and the Li Ka Shing Knowledge Institute at St. Michael’s Hospital. She’s optimistic about Canada’s progress in this area. “I feel quite hopeful about the momentum that is building on coordinating our efforts to prevent suicide in Canada,” says Rhodes, who studies sex, gender and youth suicide.

“Two themes emerge – adversity is more common than we recognize and we need early prevention to reduce exposure such as reducing the social determinants of health. We also need to help young people with the management of emotional distress like emotional literacy; reducing shame and coping strategies,” says Dr. Leszcz.

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These findings may influence Canada’s national strategy, yet to be released. According to a spokesperson from the Public Health Agency of Canada, the Federal Framework for Suicide Prevention Act is set to be developed by December 2014. The U.S., Australia and Britain have had national suicide prevention policies in place for years.

More disciplined research needed

Dr. Kutcher says that despite all the work being done, the main issues regarding successful youth suicide prevention have yet to be determined.  And, he is concerned that numerous, often commercial, programs that claim to “prevent suicide” have been put into place although their effectiveness in significantly decreasing youth suicide has not been demonstrated.

“I’d like to see a study demonstrate that a specific program has significantly decreased the number of young people who have died by suicide, as well as the number who made suicide attempts and quantified the amount of health-care resources that reduced suicide attempts used,” says Kutcher.

He has little patience for sub-par research that has allowed groups and organizations to sell weak or non-existent data as suicide  prevention programs. He feels that these programs can then give false hope to parents and participants and let policy makers off the hook when they are being held accountable for implementation of suicide prevention strategies.  He is also concerned that some academics hold the standard for evidence of outcomes in suicide prevention too low.

“Sometimes the wish to do something, gets in the way of doing the right thing,” says Kutcher. “I would rather see money spent on evaluation to determine whether programs are effective, than money being spent on putting programs into practice that we know either do not work, or that we have no idea that they do work in prevention of suicide. The key issue here is, has the intervention been shown to significantly decrease rates of suicide?  Because rates of suicidal ideation are so high, a program can decrease those rates without having any impact on decreasing rates of suicide.”

Cover 2In-school nurses support teens

Dr. Szatmari says there’s good evidence that some school-based programs work by reducing suicidal thoughts and suicide attempts.

Shauna Johnston works in Mississauga Halton high schools through the Community Care Access Centre. She’s a registered nurse with extensive mental health and addictions expertise. In 2012, Ontario hired144 nurses to work with district school boards to address the needs of students who may have mental health and addictions issues. She supports students, connects them with appropriate programs, educates parents and teachers in how they can create healthier environments, and closes the gap between the hospital and the school.

Johnston has been working with adolescents for 12 years. She calls it her dream job. “I find that age group to have a tonne of energy, they are really curious, lots of great questions, they are excited to take care of their own well being,” says Johnston. “I see students who are having suicidal thoughts every day. We are here to be the eyes and ears asking students if they are having suicidal thoughts. We support them to get the services they need, so that doesn’t become their last choice,” she adds.

Johnston says some students make remarkable changes; for others, the road to recovery can be long and difficult.  “I think for students, especially in adolescence, it’s so hard to see that that there’s light at the end of the tunnel. As adults, we’ve been on the Earth so much longer. So we’ve had really bad days. But we know that there are good days just behind them. But adolescents haven’t had the luxury for being here years and years to know that this period of sadness is temporary.”

Peer Support: You’re not alone

Johnston says peer support is key to youth suicide prevention. There are peer support groups in many schools, some hosted by local hospitals or other organizations. Peer-to-peer engagement is the cornerstone of Jack.org, a registered charity and national network of young leaders in mental health.

Erin Hodgson, project lead at Jack.org, shares her own experience of mental illness and recovery with other young people. “The reason I spoke up and reached out for help in the first place is because my high school peers opened up the conversation and shared their stories. I love that now I get to pay it forward. Many students approach me after a talk to say that I gave a voice to the pain they were holding inside, and that I helped them feel that it’s okay to talk about it,” says Hodgson.

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Johnston says peer leaders like Hodgson can have a huge positive impact. “It’s one thing to have the nurse tell you that this is really normal. But she’s kind of old and not really cool. But when someone in your peer group says, you know what, I’ve been there. I can help you with this. That’s much better,” says Johnston.

Next generation of intervention

Dr. Kwame McKenzie, president of the Canadian Mental Health Association Toronto, believes the best approach to changing youth suicide outcomes has three components: changing attitudes, understanding through knowledge, and building skills.

“If you want to make a change, you have to get everyone on the same page and de-stigmatize this topic.  You need to be given enough knowledge about the subject but if you actually want to change things, you have to give them skills. The information is interesting but unless they know what to do with it, you don’t actually change an outcome,” says Dr. McKenzie, who is also the medical director responsible for dual diagnosis, child youth and family and geriatric services and director health equity at CAMH.

Dr. McKenzie would like to see cognitive behavioral therapy (CBT) taught by grade 10 as a coping and life skill, which can help students substantially in later years. He also suggests schools offer the Mental Health Commission of Canada’s mental health first aid course (http://www.mentalhealthfirstaid.ca) as an option for volunteer credit. Or, encourage parents to invest in the training course for their teens much like they do with swimming lessons.

He believes youth mental health is greatly influenced by the environment in which teens live and learn. Some of his suggestions strive to stabilize: smaller class sizes; school days that start later in the morning to coincide with when the teen brain wakes up; and education that focuses less on grades and more on producing well-rounded human beings.

“There’s also a reasonable amount of evidence that vulnerability to developing mental health illnesses is linked with levels of adversity and material deprivation in childhood,” says Dr. McKenzie. “Whatever we can do in Canada to reduce that vulnerability is likely to drastically improve those outcomes.”

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Dr. Sinyor recommends early intervention programs with specific goals, for example, parenting classes or support for at risk families to prevent some of the most stressful early life experiences such as childhood abuse and neglect. He worries about an overemphasis on youth education about suicide that may inadvertently send the message to adolescents that suicide may be a normal part of life.  Instead, like Dr. McKenzie, he speaks to the importance of teaching youth strategies for resilience in the face of adversity, whether that’s an online or school bully, or learning how to manage a problem at school or at home. Transitions, a guide produced TeenMentalHealth.org is one of the most highly recommended resources to building resilience.

Echoing Dr. McKenzie, Sinyor adds that “CBT, and a related therapy dialectical behavioural therapy (DBT), can help to prevent and treat mood and anxiety disorders as well as accompanying suicidal thinking and behaviour.  These treatments are relatively straightforward and, in my opinion, we should be using them broadly like vaccines rather than waiting until children become ill to provide them.”

Dr Sinyor’s reference to early stressors opens up an important  area about adverse childhood experience (ACE) and their linear relationship with suicidality, notes Dr. Molyn Leszcz, psychiatrist-in-chief at Mount Sinai Hospital and the interim chair, department of psychiatry at University of Toronto. “Two themes emerge – adversity is more common than we recognize and we need early prevention to reduce exposure, such as reducing the social determinants of health. We also need to help young people with the management of emotional distress like emotional literacy; reducing shame and coping strategies,” says Dr. Leszcz.

Behaviour change certainly strengthens a teen’s resilience, but being in tune with our physical environment can too. Studies show that plants and trees near work or study areas help to restore the mind from mental fatigue, contributing to improved work performance and satisfaction. In Japan, a popular practice known as forest bathing involves people going into forests and parks to simply observe and be with one’s senses.

“We seem hard wired to need access to green space,” says Dr. McKenzie. Drs. McKenzie and Sinyor both say that none of these preventative measures on their own will solve the problem completely, but put together they could be very powerful.

Kutcher agrees that mental health literacy that involves better understanding of many mental health concerns is very important. He and his team have developed a mental health literacy resource (the Guide) that can be easily embedded into existing curriculum taught by usual classroom teachers in junior high or high schools.  Research studies in three different Canadian locations have shown that this simple intervention improves knowledge, attitudes and help seeking efficacy for teachers and students alike.

“This is such a simple intervention and it works very well. Giving young people and educators the skills and knowledge they need is the foundation to improving mental health and the care for mental disorders,” says Kutcher.

Dr. McKenzie urges young people to recognize that depression can be manageable, and most people that have had depression go on to live fulfilling lives.

“If you have a serious depression, you are going to have a better prognosis than someone with diabetes. You’ll have a better prognosis than someone with asthma. People with mild depression do not need medication, changes in their life and decreasing stress is effective.  People with moderate depression may need medication or therapy.  But if you have a serious depression, the most likely scenario is that you are going to have to take either therapy or pills for a period of time which could be a few months to a year on average; you are going to take it for a while; then you will stop it and you’ll be okay. You may have vulnerability for another depressive episode and you will be treated for that. That’s the most likely outcome,” says Dr. McKenzie.

Family affair, sticking together

Lynda Kent and her son are now connected to appropriate services. The Family Navigation Project recently linked Kent up with a weekly support group after she told them she was crashing and needed to recharge. While her son copes with all the new information and tools at his fingertips, his mother is urging him forward, hoping he will make the right choices.

“There is a real incredible theme of parents not giving up on kids – not to say that there aren’t arguments. They are saying no matter what, I’m here for you and we’re going to figure out what to do and get past this,” says Dr. Elyse Dubo, a psychiatrist and producer of two films shown in schools that address youth and mental health.

Kent’s son, who gave permission for his story to be told, but didn’t want to be interviewed, recently told his mother that he feels he’s doing better. He also asked her not to give up on him. And he also wanted her to know he didn’t like how people use the term ‘mental health’. He says it sounds like you are going mental. And that’s not the case at all, he says. He calls it just junk in your head that you are working on getting through together.

*Some names of the families mentioned in this article have been changed to respect their privacy