Rosanne Nelson knows her son better than anyone.
She knows he is a talented musician who played in a band with his brother for years.
He is a hard-working student who beat the odds and finished his degree despite ongoing health challenges.
He is a middle child with an unquenchable thirst for knowledge.
But she also knows him as a person with mental health challenges: a complex history of psychosis, schizophrenia, substance use, repeated hospitalizations, and time spent living on the streets.
After years of heart-breaking struggle in their “one step forward, five steps back” health-care journey, she clearly remembers the first time a clinician said to her “tell me about your son”.
“He wanted to know who my son was pre-diagnosis and how I saw him,” Rosanne recalls. “I was really happy to talk about my son’s strengths. I felt very proud of him and was grateful for this kind and sensitive doctor who cared about my son, not just his diagnosis. I felt like a good mother and a valuable part of my son’s care team.”
But Rosanne also remembers the terror she felt when her son checked himself into a hospital and nobody told her. She didn’t know if he was dead or alive.
“I frantically searched the parks and other hangouts. I finally got the idea to check the hospital, and I was told that they couldn’t confirm anything,” she recalls. “I went there in person and I was livid. I was worried my son was dead or overdosed, and I wasn’t given the courtesy of a phone call. I had been up to the hospital and psych ward with my son many times and I am his next-of-kin. There was no reason to withhold the general information that he was okay (and alive!).”
It is these stories and countless others like them that guided the development of Interior Health’s new Family Involvement with Mental Health and Substance Use (MHSU) Policy and accompanying guide for clinicians.
The three tenets of respect, sharing information, and working together are the foundation of the policy.
“We know that having the involvement of family members can make a big difference in reducing relapse and avoiding hospitalization, and generally supporting a person’s well-being,” says Jana Abetkoff, Director of Quality, Standards and Practice, Mental Health and Substance Use Network. “For far too long though, family members have been kept in the dark or even shut out, rather than being included as part of the care team in a way that respects consent and privacy.”
Development of the Family Involvement policy is part of Interior Health’s efforts to improve access to mental health and substance use care and make it more person-centred.
Other examples of this work include the upcoming launch of a new 310-MHSU phone number recently piloted in the South Okanagan, and the renaming of many community MHSU programs and services to easier more recognizable titles. A new Most Responsible Clinician MHSU standard processhas also been launched in Interior Health.
“These are steps we have taken to be more person-focussed. They support people to seamlessly move through the system and accurately matched to services, by ensuring there is one Most Responsible Clinician who provides continuity of care from admission through until discharge from our services,” says Jana. “We are working to remove some of the complexity from the system and ensure when someone needs help, they know who to call.”