Mother and son duo share lived and living experience to inform improvements at BCMHSUS
At BC Mental Health and Substance Use Services (BCMHSUS), incorporating patient and family experience in planning and program development is a key part of ensuring the highest standard of care.
The evidence for patient and family engagement is so strong that Accreditation Canada outlines it as a standard for how we work.
At BCMHSUS, the Patient and Family Partner Network enables people with lived and living experience to contribute their insights to help shape policies and programming. Two members of the Patient and Family Partner Network are mother and son, Michelle and Shane. Shane is a former patient of the Forensic Psychiatric Hospital in Coquitlam and lives with a schizophrenic disorder. Throughout his life, Michelle has been his primary support system and now, they both apply their experiences to help improve care for others.
"It's important that patients and family are involved because we have lived through it," said Shane. "We have the experience and are more knowledgeable about what will work and what won't."
Applying lived experience to improve the patient journey
Over the last year, Michelle and Shane have worked together on a number of projects for the Forensic Psychiatric Hospital and Regional Clinics. This includes providing input as members of the FPH Patient and Family Advisory Council (PFAC) to guide improvements in person-centered care at the hospital, and participating in a journey mapping exercise for the Forensic Psychiatric Clinics. Journey mapping aims to improve the patient experience by using first-hand insights to highlight and address gaps in the system. Patients and families have very different perspectives and experiences to share. Together, Michelle and Shane provide a comprehensive picture.
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"I was involved in developing the patient and family information handbook for the Forensic Psychiatric Hospital," said Michelle. "Even though Shane did not work on it directly, he was a huge source of information. He gave so much valuable input, contributing behind the scenes."
Shane's knowledge was instrumental in helping to build the Safety Positivity Authenticity Resilience and Knowledge program (SPARK), which incentivizes participation and reinforces good behaviour instead of focusing on punitive measures for absenteeism.
"Shane knew what would and would not work for this program," said Michelle. "I saw how helpful his experience was to the process. Along the way, I have learned a few things about Shane that I didn't know before, things he went through that are valuable for me to know as a Mom. Working together on these projects has strengthened our relationship even more."
Walking with others on the path to recovery
As a mother, Michelle appreciates the support that families and loved ones can find through the partner network.
"When you have a child with a mental illness and are trying to get them help, you think you are the only one. There can be so much shame and blame on parents but when other families are involved, it lifts the burden."
"When Shane was first admitted to the Forensic Psychiatric Hospital, it wasn't easy," said Michelle. "He had been in corrections for eight months and things were difficult. When you have a child with a mental illness or psychosis and are trying to get them help, you think you are the only one. There can be so much shame and blame on parents but when other families are involved, it lifts the burden."
Michelle and Shane are currently working together on journey mapping for the Forensic Psychiatric Clinics and hope that their contributions will be incorporated to help others during and after treatment.
"Having workshop reminders on self-care is something we said would be really helpful for patients when they're getting ready to leave the hospital and live on their own," said Michelle. "Simple things like brushing your teeth, grocery shopping. When people are in care for years, they would benefit from reminders about these."
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From the patient perspective, Shane shared that it would be helpful to provide clients with one extra day of medication as a back-up.
"I take medications three times a day and it's stressful if I ever lose a dose, forget them when I leave the house, or if I have trouble contacting a prescriber when I run out" he said. "If I had one back up dose in my wallet it would save me that anxiety of being left without medication."
BCMHSUS aims to provide patient- and family-centered care, and a positive, impactful experience for patients, families, and staff. Thanks to partners like Michelle and Shane, we can continually improve the quality of care and support we provide to people with complex mental health and substance use challenges.