This blog features highlights from conversations about mental healthcare transformation on the Wicked Mind pod, hosted by Dr. Diane McIntosh. Listen to the full conversation with Scott Elliot and then explore others in the Wicked Mind series.
Scott Elliott, executive director of the B.C.-based Dr. Peter Centre, one of the world’s most recognized care facilities for people living with HIV/AIDS, likes to tell the story the clinic’s namesake, Dr. Peter Jepson Young. Young was a physician who was diagnosed with AIDS in 1986, at a time when HIV treatments had not yet been developed.
Instead of dwelling on his diagnosis — he was given only six to 14 months to live—he channelled his energies into educating the public about HIV/AIDS.
Dr. Peter lived five years longer than anyone expected, and used his last years to present the Dr. Peter Diaries, short weekly segments on CBC television where he shared his experience with AIDS. Before his death at age 35, Dr. Peter, his life partner, and a group of friends met and the idea for the Dr. Peter Centre was born.
“Dr. Peter had captured the public imagination around a topic that was highly stigmatized and that people were fearful of and didn’t want to talk about,” says Elliott.
After Dr. Peter’s death a clinical space was built that allowed people with HIV/AIDS to live and die with dignity in a stigma-free, compassionate environment — a ground-breaking initiative at that time. “Being able to do that in a way where you’re surrounded by people who don’t judge you, who care for you is a gift because so many people didn’t have that — especially in smaller communities or even other large cities around North America,” says Elliott.
Dr. Peter’s pioneering efforts led to a groundswell of activism. “That’s when the gay community came together and started demanding some real change, in terms of how we address healthcare, how we engage with physicians,” says Elliott. “It was about that time that we really saw patient advocacy start to grow.”
While it’s not the case everywhere and in every situation, today, Canadians living with HIV/AIDS are less likely to be shamed for their disease. Elliott wonders if people with mental illness might one day be in the same camp, saying, “I wonder, because of the stigma within mental illness, how can we accomplish what we did with HIV/AIDS?”
The public’s perception of mental health issues is changing. But there’s a long way to go to remove the stigma around mental illness, particularly in the workplace. “There’s still a huge stigma and misunderstanding of what it is,” says Elliott.
Elliott shared some of the ways that HIV/AIDS lost its stigma, offering a kind of playbook for mental illness:
Elliott says that high-profile actors were instrumental in changing people’s perception of HIV/AIDS. “We had Elizabeth Taylor, Princess Diana, Elton John,” he says. The public gestures of these celebrities—whether it was hugging a gay man dying from AIDS or holding a baby infected with HIV—normalized the disease.
Mental illness, like HIV/AIDS, is rarely a simple thing. He explains, “Think about an onion. You’ve got trauma, you layer on mental illness, you layer on substance use – which they’ve used to treat their mental illness because they haven’t been diagnosed or they haven’t been treated properly. You layer on poverty, then racism, sexism, etc.” He added, “So now you have this really hard ball – layer upon layer of stigma.” AIDS patients faced this same “stigma onion” in the 1980s and 1990s, with many patients stigmatized for being gay and battling addiction. All these issues, or layers of the onion, need to be recognized and treated with science, but just as importantly, with compassion.
People need to talk about mental illness, says Elliott. “We’re starting to see more and more vocalization within the mental health community, which is fantastic,” he says. “Mental illness is not something that we need to hide.”
Elliott says that the residents of Dr. Peter Centre illustrate how the medical system still has a lot of work to do when it comes to treating patients with respect. “Right now, we have just over 450 people in our day health program, and each one of them is connected to a GP because of their HIV status,” he says. “The vast majority, maybe 90 per cent, don’t want to go see their doctor and they don’t want to engage with the medical system because when they go, they don’t feel valued.”
He says the medical professionals who work at the Centre take a different approach, treating residents holistically and without judgement, with everyone involved in providing care on the same page. He calls this approach ‘wrap-around care.’ “This allows for a trust that we don’t see between our participants and their doctors,” says Elliott.
Treating mental illness, as with HIV, is a long-term commitment. Elliott says that setbacks can be expected, but the overarching goal is to ensure an individual’s life is as healthy and stigma-free as possible.
Dr. Peter Centre focuses on the small wins, Elliot says, adding: “If someone comes and shows up to the Dr. Peter Centre, they have lunch, they learn to smile, they learn to engage and have a conversation; that person is more human. They have a better life. They’re re-engaged in society,” says Elliott.
Elliot believes we must approach mental illness “in a way that brings people together rather than pitting people and organizations against each other.”
Listen to my conversation with Scott Elliot on the Wicked Mind podcast>>
This blog post is part of a series looking at the state of our mental healthcare system and ways we can create sustainable change to improve quality and outcomes for anyone impacted by mental illness.
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