Deborah Phehla died choking on paper, cardboard and plastic she had swallowed, even though her patient file warned that she would eat debris without supervision. Nobody with the power to act received that warning. Phehla was one of hundreds of mental healthcare patients moved from a Life Esidimeni facility. Her records detailed her history and needs, but she had no say in decisions about her care.
Records existed. Authority did not listen.
The divide between what patients know and what institutions do lies at the heart of this account. Phehla’s files included a case history and periodical reports, but documentation alone didn’t protect her. Her death stands as the stark example of a system that held information about a person while shutting that person out of decisions about their own care.
The World Health Organization is marking World Mental Health Awareness Month by urging people with lived experience of mental illness to help shape decisions affecting them. The WHO says it wants to “recognise their knowledge as a vital form of expertise” and calls for their voices to shape policies, services and decisions. The campaign seeks to bring people with lived experience into decision-making rooms.
Since the Covid-19 pandemic began, South Africans including Lasizwe Dambula, Trevor Noah and Bonnie Mbuli, along with hundreds of others, have spoken publicly about mental illness. Florence de Vries wrote that their public profiles have helped humanise mental health conditions and loosen stigma. Trevor Noah appeared in a photograph in Cannes, France, on 20 June 2023; its caption said he has often spoken about his own mental health.
Who gets to define care?
Professor Stephan Rabie, chief research officer in the University of Cape Town's Department of Psychiatry and Mental Health, said programmes often draw on literature and clinical observation: what practitioners think people need, rather than what people say they need. Stigma, he said, pushes lived knowledge underground, stifles open conversation and deepens isolation and withdrawal.
The WHO and the Lancet Commission published research in 2022 that identified people with lived experience as central to ending stigma and discrimination. The research presents them not simply as subjects of campaigns, but as leaders and co-leaders. Evidence cited in the article says they bring distinct expertise as consultants and members of advisory boards, committees and councils. Rabie said they can explain what it is like to live with a condition, receive treatment and experience society, and “show us what good care may mean.”
Professor Laila Asmal, a psychiatrist and researcher at Stellenbosch University, said services in many fields grow stronger and more effective when the people who use them help shape them. The focus on lived experience gained prominence after the pandemic, she said, when millions of people spoke publicly about their mental health.
A seat in the room—or another promise?
Asmal said lived experience matters where care is delivered, knowledge is produced and policy is made. She described possible roles for people as peer-support workers and recovery-group facilitators, contributors who shape research and evidence, and participants in decisions about funding, service design and legislation. These are proposals to share authority, not a report of changes already made across hospitals, research institutions or government departments.
Genuine inclusion means institutions must change who holds authority, Asmal said, and avoid tokenism. “That is uncomfortable, and it is slow,” she said. She returned to Life Esidimeni: family members spoke out, but nobody heard them; documentation existed, but nobody acted on it. The article records no specific grassroots organizing or mutual-aid response. It identifies de Vries as chairperson of the Ithemba Foundation, a South African mental health awareness NGO, but says nothing about the foundation’s funding or services.
The South African Journal of Psychiatry launched a lived experiences section in 2025. Asmal, an associate editor, said the section recognises the expertise of people facing, living with and recovering from mental illness. De Vries’s article appeared as an Op-Ed; Daily Maverick said its views belonged to the author or authors and didn’t necessarily represent views supported by the publication. The invitation to listen is on the record. So is what happened when people with knowledge stayed outside the decisions.