Youth must be part of designing their own mental health services – Toronto Star

Any parent who has tried to access mental health help for a child knows just how challenging that can be.

You need coordination across multiple siloed systems, explains Dr. Seema Marwaha, an internal medicine physician at St. Michaels Hospital in Toronto. You need the health care system to interact with the education system, possibly even social services. Its a bureaucratic nightmare, says Marwaha, who is also editor-in-chief of healthydebate (healthydebate.ca), a website thats mission is to make unbiased, evidenced-based health information available to the public in an accessible way.

But if its hard for us to make our way through those systems even leveraging all our grown-up resources of experience, vocabulary and willingness to be the squeakiest of wheels for our children imagine how hard it is for the children and youth who need help the most.

Healthy Debate wanted to know what its like to be a youth whos waited for 18 months, whos just been given a bunch of pamphlets and told to stick it out, says Marwaha. What does that actually feel like and what do they think would be a better solution for how to deal with what theyre going through?

The result is a new website, created in partnership with the Centre for Addiction and Mental Health (CAMH), that amplifies the voices of young people who have not only lived through mental illness, but who are now actively working to make the experience better for youth going forward.

Our Voice Matters (ourvoicematters.net), launched earlier this month, uses words, photos and videos to share the unique stories of four young people.

Em Hayes is one of them. I entered the system at 11 and it took 15 long years to get two accurate diagnoses, says Hayes. Those were PTSD and bipolar disorder. But on the road to the right diagnoses, Hayes was given five incorrect diagnoses, prescribed 15 medications, saw six psychiatrists and three therapists. And it took two hospitalizations and breakdowns for people to actually finally realize what was happening.

Hayes attributes the delays to two things: care providers who lacked both an understanding of how trauma contributes to mental illness, and knowledge of how to build rapport with young patients a process that takes more time than is often allowed in a standard medical appointment.

Marwaha from healthydebate says working on this project showed her theres a fundamental problem with the language healthcare providers like her usually use to describe youth mental health issues. Theyre not the words that kids would use.

Case in point, one of the websites contributors had her first panic attack at 12, but didnt know what anxiety and panic attacks were. Physicians, intake nurses and other care providers can easily miss things if theyre reading from a traditional checklist of symptoms designed for adults.

The implications of missing people are staggering given that 20 per cent of youth have a mental health disorder and only one in five get the services that they need, says Marwaha. Imagine all the people that are experiencing things but just dont know the words to use.

Hayes says that in order for service providers to do better, they have to hear from youth on everything from how treatment programs are designed to the words used to communicate that those programs are available.

Hayes now works with CAMHs youth engagement initiative on projects like Game Changers, a hub of resources aimed at helping young Canadians to get more comfortable talking about mental health. One task was youth-i-fying the language of documents that are too antiquated, too full of jargon and not inclusive enough for a young audience, says Hayes.

The hope is that kids who enter the system going forward wont have the kind of long and winding road to diagnosis and effective treatment that Hayes endured.

In some parts of health care, explains Marwaha, engagement is a buzzword that amounts to little more than a token patient sitting on the board.

The youth ambassadors from CAMH wont stand for that kind of tokenizing, she says. These are not your sort of average patient participants. Theyre really engaged, they know what theyre talking about and they know how they want their stories to be told.

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Hayes concurs. I actually have the opportunity to make a dent in the system and sway things for better and so that gives me hope and purpose.

The youth voice is powerful and were here to change the system. So ready or not, here we come.

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Youth must be part of designing their own mental health services - Toronto Star