Nothing about us without us.
This phrase, repeated often by the four individuals I interviewed for this project, sticks out in my mind as something the health care system can do better at.
Youth mental health is no exception.
Up to one in five Canadian youth have a mental health diagnosis. And this is likely an under-reported statistic, given the stigma associated with mental health.
One in five. This number is staggering to me.
Even more staggering is the fact that only 20 per cent of youth get the mental health services they need. If only 20 per cent of people who had a heart attack received care, we would be sounding the alarm.
In 1983, youth mental health disorders were as prevalent as they are today. A generation of time has passed and youth experiencing symptoms of depression, anxiety or psychosis still have difficulty being identified, being treated with dignity and respect, and seeking help.
Clearly whatever we have been doing to improve the mental health system for youth is not working. Youth are not getting the right care at the right place at the right time. And they often don’t feel cared for even when they have access to services like community programs, psychiatrists or medication. We need a different approach.
The Centre for Addiction and Mental Health (CAMH) Youth Engagement Initiative is attempting to do just this – think differently about lived experience, youth mental health and system change. The program brings youth with lived experience in mental health together with researchers, administrators and health systems thinkers to ensure the youth voice is present at all levels of projects and organizations.
It is true patient involvement. It’s not a token patient at the table to check it off some list. The decisions the youth are being engaged on haven’t already been made by some higher ups. The youth have a seat at the table and are recognized as experts in their own experience.
Karleigh Darnay and her team at CAMH identified four youth advisors to share their personal stories with the mental health system. We interwove their experiences into a multimedia project called Our Voice Matters (a follow up project to last year’s The Opioid Chapters).
Their experiences are unique and multifaceted. The goal of the project was to start to understand the stories behind the youth mental health statistics. This project in no way represents everyone’s story, but begins to tell a few important ones.
It took Em 15 years to get a correct diagnosis. Their story is entitled a numbers game because of the sheer volume of professionals they had to encounter along the way.
Mahalia was tired of being told to build herself ‘a life worth living.’ As a 13-year old, this phrase we often use with adults had no meaning to her.
Chloe didn’t know what a panic attack was when she first experienced it. She thought she was going to die. And felt judged when she tried medication for her symptoms.
Augustina started hearing voices continuously for months, and waiting to get into an early intervention program for psychosis was not easy to do.
Each of these participants were eloquent, insightful and had invaluable ideas, suggestions and feedback about the mental health system and how to improve it for those to come. And they each felt a responsibility to help build a better way for future generations.
I hope that Our Voice Matters challenges the stigma that surrounds mental health. I hope it challenges providers and policy makers to try to interweave patient and community expertise in all that they do. As difficult as it might be, it’s worth it in the end. And I hope it illustrates that mental illness can happen to anyone.
As with most complex problems, there are no easy solutions. We need to prioritize mental health and work to reduce the institutional stigma that exists around it. We need to have empathy and compassion for those who experience mental illness. And we need to listen to those with lived experience to understand how we can do better.
“Nothing about us without us.”