Hilary's Story

“When she was in grade 10, our full-time job was trying to keep her alive,” Hilary Allen recalls about her daughter, Mackenzie.

Mackenzie was only 15 when she entered into her parent’s bedroom and told them she wanted to end her life. Mackenzie had struggled with anxiety and making friends from a very young age. However it wasn’t until high school that issues escalated and Hilary knew she needed to get help for her daughter.

It wasn’t an easy journey.

Hilary Allen

Getting Mackenzie, who struggled with suicide ideation, depression and an eating disorder, the comprehensive and proper care she needed was a challenge that Hilary still remembers vividly. It was also one of the primary reasons that Hilary decided to join Frayme’s Family Advisory Committee.

Based on my experience, I see the need for integrated care and better sharing of information.

As a parent, Hilary knew she wanted to get involved but didn’t know how. She began knocking on doors until she connected with Dr. Ian Manion, Frayme’s Co-Scientific Director.

When Hilary became aware of Frayme, the idea of a network built around knowledge translation resonated with her. Hilary hopes it will create a snowball effect where people can build on their existing knowledge to ultimately create a whole greater than the sum of its parts.

According to Hilary, her daughter’s story is a good reflection of the changes that still need to happen within the mental health system. “Her care was fragmented because of  her conditions. Some of her conditions would be treated at one hospital and then others would be managed at another hospital. Plus, each hospital had separate programs and staff depending on the level of care needed at a particular time. It felt like every step was a different doctor and there was no continuity." 

For Mackenzie, the breaks and changes in treatment took its toll. Mackenzie ended up getting 16 different medications with 8 different psychiatrists and had severe reactions to several of the prescriptions.

“We had doctors wanting to prescribe medication that she already had severely reacted to.”

Hilary learnt to keep a clear record of all the medications that her daughter was prescribed along with the side effects.

“This isn’t rocket science. There’s no reason why these things can’t be fixed and I have a lot of hope for the integrated care model,” Hilary says.

The gaps in the system made Hilary want to raise awareness and advocate for change. As a member of Frayme’s Family Advisory Committee, she is now committed to sharing her and her daughter’s lived experience in order to make a change. “I’d like to see a system that revolves around the person. There are glaring gaps in research around medication and integrated care.”

Family and youth engagement plays a big role in that for Hilary. “It’s like a manufacturer having a focus group – you want to make sure the product meets the needs of the recipient. Just because the family and youth aren’t necessarily paying directly for the service, it is still a service for us.”

This fact became most noticeable to Hilary, when Mackenzie was hospitalized in a crisis unit for adults where she was surrounded by patients much older than her.

It was difficult for her; she felt a lot of anxiety and didn’t feel like she belonged there.

Hilary also believes in a need for tools that help empower youth in terms of medication management and treatment. “They need to use technology in a way that can help kids as much as possible.”

As for Hilary’s goals as a family advisor for Frayme – “I’d like to contribute however I’m able to. I want to play a part in moving this forward and I have a background in health policy development. I’ve seen how little the system has changed in many years.”

Hilary hopes to engage other parents and caregivers hoping to get involved. “There are so many people with experience and skills who just want to help.”