Deborah Phehla died choking on paper, cardboard and plastic she had swallowed. Her patient file warned that she would eat such debris if left alone. No one with the power to act saw that warning.
That’s Florence de Vries’s account of Phehla, one of hundreds of mental healthcare patients moved from a Life Esidimeni facility. Her records contained a case history, regular reports and documented needs. But she had no say in decisions about her own care.
A decade after Phehla’s death, the World Health Organization (WHO) is using World Mental Health Awareness Month this month to press a point South Africa’s tragedy makes painfully clear: people with lived experience of mental illness should help shape decisions affecting them. The WHO says it wants to “recognise their knowledge as a vital form of expertise. This year’s campaign calls for their voices to shape the policies, services and decisions that affect their lives.”
What Counts as Expertise
The WHO defines lived experience as “something someone has experienced themselves, especially when it gives the individual knowledge or understanding that people who have only heard or learnt about such experiences do not have.” The campaign theme invites those people into decision-making rooms.
Professor Laila Asmal, a psychiatrist and researcher at Stellenbosch University, says evidence increasingly shows that services across many fields become stronger and more effective when the people who use them help shape them. “Mental health is no exception, and the momentum behind this year’s focus has been building for some time,” she said. The idea gained prominence after the pandemic, she said, when millions of people spoke publicly about their mental health.
Since the Covid-19 pandemic began, South Africans including Lasizwe Dambula, Trevor Noah and Bonnie Mbuli, along with hundreds of others, have spoken openly about mental illness. De Vries wrote that their public profiles have helped humanise mental health conditions and loosen stigma.
The Cost of Not Listening
Asmal didn’t soften her assessment of Life Esidimeni. “In South Africa, we have our own painful illustration of what happens when the gap between lived reality and the service design gap is left unaddressed. Life Esidimeni was not only a failure of resources and planning, it was the endpoint of a system that had never built the habit of listening to the people it was supposed to serve,” she said.
Professor Stephan Rabie, chief research officer in the University of Cape Town’s Department of Psychiatry and Mental Health, says research, care and policy still undervalue lived experience. Practitioners often build programmes from literature and clinical observation, he said, reflecting what they think people need rather than what people say they need. Stigma, Rabie said, pushes this knowledge underground, suppresses open conversation and deepens isolation and withdrawal.
The alternative shows measurable promise. “Lived experience testimonies can facilitate peer support and inspire hope for recovery among other people living with mental health conditions,” Rabie said.
From Subjects to Leaders
Research from the WHO and the Lancet Commission, both published in 2022, on ending stigma and discrimination in mental health identifies people with lived experience as central to destigmatisation. They aren’t merely campaign subjects, the research says, but leaders and co-leaders. Evidence indicates those in leadership roles bring distinct expertise as consultants and as members of advisory boards, committees and councils. “People with lived experience can provide insights from a different perspective, including what it is like to live with a condition, receive treatment and experience society. Ultimately, they can show us what good care may mean,” Rabie said.
Asmal points to three places where lived experience matters: where care is delivered, where knowledge is produced and where policy is made. At the service level, people can work as peer-support workers and recovery-group facilitators, rather than receiving care alone. At the knowledge level, their expertise can shape what researchers study and accept as evidence. At the policy level, it can give them a place in decisions about funding, service design and legislation.
The South African Journal of Psychiatry introduced a lived experiences section in 2025. As an associate editor of the journal, Asmal said the section recognises that people facing, living with and recovering from mental illness bring irreplaceable expertise. “What they know from the inside of that experience belongs at the centre of how psychiatry understands, researches and practises care,” she said.
Real inclusion, Asmal warned, requires hospitals, research institutions and government departments to shift who holds authority, without tokenism. “That is uncomfortable, and it is slow,” she said. “The alternative is what we have already seen. In Life Esidimeni, family members spoke out, but they were not heard. Documentation existed, but it was not acted on. A system that does not structurally value lived experience will ignore it even when it is loud.”
De Vries chairs the Ithemba Foundation, a South African mental health awareness NGO. This Op-Ed’s views are the author’s and don’t necessarily represent views supported by Daily Maverick.
Why This Matters:
Phehla’s file held the warning that could have saved her. The information existed; the people who needed it most didn’t hold the power to act. That gap between knowing and acting is what the WHO campaign targets. When patients and families can’t influence funding, service design or legislation, public institutions can record someone’s needs in detail and still fail them. Asmal’s point is that listening must become part of the system’s structure, not depend on goodwill, and that this means institutions surrendering some authority. For people relying on public mental healthcare, who have the least power to demand better, whether that shift happens determines whether warnings get heard before it’s too late.