The power of lived experience

Alana Salsberg is a huge believer in lived experience informing the mental health system. It’s partly why she is one of Frayme’s newest family advisory recruits. It’s also the reason Alana is aware of the very real and significant issues currently facing youth seeking mental health treatment. 

Alana is a Program Engagement Director for Big White Wall, an online mental health and wellbeing service that offers self-help programs and community support to those who need it. While Alana’s day-to-day revolves around working to support those with mental illness, her personal life is also deeply connected to the mental health world as well. “Right now, my biggest concern is that I have a 22 year old daughter with a rapid-cycling mood disorder,” Alana said. 

As a young child, Alana’s daughter exhibited many symptoms but assessments were done in clusters and there was no definitive diagnosis right off the bat. “My daughter presented with a set of complex behaviours, and there were suggestions of Tourette’s syndrome, attention deficit hyperactivity disorder, anxiety and a whole bunch of other things.” Alana chose not to start her child on medications without a clear diagnosis.

“I think what frustrated me the most during that time was that she would get one-hour assessments with standardized testing and then the doctor would spit out a diagnosis, without context, and hand off a prescription.” 

There was no clear integration and navigating the system was difficult for Alana and her daughter. Thankfully, Alana could leverage some connections made through her father who was a doctor and because she had been advocating for her daughter since she was little. 

Eventually, her daughter’s anxiety and other mental illness symptoms got worse and she was introduced into a more intensive, therapeutic day treatment program called ‘Fresh Start” at Sunnybrook Hospital. 

 

 

“There is a huge disconnect between general physicians and community resources. It’s a myth to think that there aren’t resources; the problem lies with the awareness of those resources.” 

Alana sees these gaps in both her personal and professional lives. “As I’m leading this program for engagement, one of the biggest challenges is getting primary care attention and figuring out where and what the most appropriate resources are.”

Now that her daughter is older, Alana is facing a new obstacle – “When a child transitions from a minor, they can choose to not have their parents involved in their care anymore.”

For Alana, after managing her daughter’s health for so long and advocating on her behalf, allowing a youth who is sick to control what is relayed to the medical professionals feels dangerous. “I have to hope that the psychiatrist knows what is going on and that she is communicating effectively and receiving the proper care and assessments.”

Alana has doubts, however, because for her, context is a critical component to receiving care. It’s also something that was severely lacking in trying to find help for her daughter.  “It’s very important in assessing someone with mental illness and solution finding. Without individual context, you just get stuck on medication.” 

Joining Frayme’s Family Advisory Committee was a natural step for Alana who has been an advocate and proponent of lived experience for many years. “One thing that always confused me was that the people who were leading the groups or determining the programs’ structures were often individuals who could clearly not relate to having a mental illness.” 

Alana is hopeful for change though, and is glad that peer support and family and youth collaboration have become integral to care planning. “There have been wins, but we have a long way to go in terms of making sure there is a collaborative approach and not standardizing everything.” 

Alana hopes that her experience, voice and even frustration will help play a role in forming better systems of care for not only her daughter, but all youth.

“These kids will eventually turn into adults and you have a very small window of time to help before you lose your say when they become an adult. You have to teach them advocate for themselves.”