Filling the gaps of mental health care with lived experience

When we exhibit physical symptoms of illness like pain or nausea, we know our family doctor will work quickly to resolve our issue. They will often thoroughly assess us and may link us with specialists for further tests, diagnosis and treatment. In many of these situations, we are not compelled to believe our physical pain or illness is due to any personal fault.

Unfortunately, this is not the case when we experience symptoms of mental illness. Even now, when so much is understood about mental illnesses, people who experience symptoms do not typically receive the treatment they need to recover. Albertans must be provided with the same health care and reassurance when we exhibit symptoms of a mental illness or a mental health concern as we do when we experience physical illness or injury.

In 2015, Kim Titus’ son Braden Titus was thirty-one years old and struggling with his mental health. When Kim entered a doctor’s office with her son in September of 2015, she listened to Braden confirm with his doctor that he was considering suicide. Kim was distressed and shocked to learn her son would need to wait three weeks to talk with someone. Tragically, Braden died before his appointment.

Kim says she witnessed a critical gap in the health care system in that doctor’s office. “Doctors may refer patients to psychologists, but the wait times are long. Not only that, but the doctor and psychologist may not communicate with one another. There are a lot of gaps.” Kim says, “While the stories of loss may end the same, the journeys with our loved ones are as unique and individual as snowflakes.”

Necessity for both quantity and quality health resources

Kim is calling for standardized assessments for accurate diagnoses. She suggests each person should receive a ‘menu’ outlining where their local mental health resources are located, and these resources should be easily accessible within their community. “Individual counselling should be in the community. Resources should also include 12-step programs, meditation, healing lodges within Indigenous communities, as well as conflict management or musical therapy.”

Families of those with mental health challenges must receive community support, and right now, this support is scarce. “Challenges to mental health and wellness become a family disease because they impact the entire family,” Kim explains. “Family members receiving access to support and resources is important, regardless of the unwell member’s readiness to receive help.”

Kim says the journey towards healing begins with a first step. “If you have dark feelings, my first piece of advice is to reach out. Call a friend. Make some connections. Do not suppress what you feel. There are many holistic ways to deal with mental health, but what works for me might not work for you. It takes coordination to find the right resources for everyone.” Kim sees important resources as very specific to individuals and their families, “Within the mental health gaps in our health care system is a need for consultation with the people dealing with the challenges.” The voices of lived or living experience must be provided opportunities to help build a system that works.

Mental health labels

The impact of words and labels can result in further reluctance to reach out for help. From Kim’s experience, she explains, “When people ask me what they can do to help, I say: Let’s remove the separation between ‘us’ and ‘them.’ It is just ‘us.’ We need to talk about the dehumanization our loved ones have faced. Many people who seek mental health help report that they feel stripped of human dignity and compassion. Had my son suffered a heart attack, his experience would have been significantly different within the health care system. We must be mindful of the labels and identifiers we put on others. Each one of us exists somewhere on the mental health continuum. We are either moving towards ‘healthy,’ stuck where we are or are moving away from healthy. We do not need all the labels. Humiliation and shame are demotivating factors in asking for help.”

The importance of lived experience

Kim states we all must come together as a community to learn, listen and ‘hear’ from those with lived experience, “Every negative experience presents opportunities for positive change and improvements. Many family and community members who have experienced loss are willing to speak about their experiences and tell their stories.” As Kim says, “Once you have lost someone so dear to you, you have faced your biggest fear. It allows you to talk to anyone. You have the firsthand experience of ‘what went wrong.'”

Kim hopes each of us is empowered to speak about our lived experience and work for improved mental health access. Families with lived experience should be consulted to ensure resources are accessible and relevant for the people who need to receive these resources. “Yes, there are cracks and gaps in accessing mental health care,” Kim says, “But those cracks are how the light of lived experience gets through.”

Kim Titus is the founder of Thumbs Up Foundation, now in its fourth year of operation. Thumbs Up Foundation’s purpose is to improve access to mental health care and create awareness about the need for systemic change to the current access to care. “Thumbs Up is grassroots organizing at its finest,” says Kim. “We just turned four, but we have connections throughout the province, which include members with lived experience, researchers, government members and mental health advocates.” Thumbs Up launched its latest pilot project Harmonized Health in September 2019. Harmonized Health is an innovative and integrated community health model that aims to help fill the healthcare system’s gaps with research from participating families and individuals with mental health or addiction challenges.

Learn more about Thumbs Up Foundation here.

If you or a loved one is experiencing mental health distress during this time, please call 211 (Alberta only) or the Mental Health Help Line at 1-877-303-2642.