Deborah Phehla died after choking on paper, cardboard and plastic she had swallowed, despite a warning in her patient file that she would eat such debris without supervision. The warning reached no one with power to act. Phehla was among hundreds of mental healthcare patients relocated from a Life Esidimeni facility. Her records held a case history, periodic reports and documented needs. She had no say in decisions about her care.
A warning that went unheard
Ten years after Phehla’s death, the World Health Organization is using World Mental Health Awareness Month to call for people with lived experience of mental illness to help shape decisions about their care. The WHO said it wants to “recognise their knowledge as a vital form of expertise.” Its campaign calls for their voices to shape “the policies, services and decisions that affect their lives.”
The campaign defines lived experience as something a person has experienced themselves, giving them knowledge or understanding that people who have only heard or learnt about it may not have. Its stated aim is to invite people with lived experience into decision-making rooms. Phehla’s case raises a direct issue: records can exist, and warnings can be written down, without patients or those close to them having influence over decisions.
Professor Laila Asmal, a psychiatrist and researcher at Stellenbosch University, said services in many fields become stronger and more effective when shaped by the people who use them. “Mental health is no exception, and the momentum behind this year's focus has been building for some time,” she said. Asmal said the idea gained prominence after the Covid-19 pandemic, when millions of people spoke publicly about their mental health.
Who holds authority
Asmal described Life Esidimeni as “not only a failure of resources and planning,” but the endpoint of a system that “had never built the habit of listening to the people it was supposed to serve.” Family members spoke out, she said, but the system did not hear them, and it failed to act on existing documentation. “A system that does not structurally value lived experience will ignore it even when it is loud,” she said.
Professor Stephan Rabie, chief research officer in the University of Cape Town’s Department of Psychiatry and Mental Health, said lived experience remains undervalued in research, care and policy. He said programmes often draw on literature and clinical observation—what practitioners think people need, rather than what patients say they need. Stigma, Rabie said, suppresses open conversation and deepens isolation and withdrawal.
From care recipients to decision-makers
Asmal said inclusion requires hospitals, research institutions and government departments to change who holds authority, not offer token roles. At the service level, people with lived experience can work as peer-support workers and recovery-group facilitators. In research, their expertise can shape what gets studied and accepted as evidence. In policy, they can help decide funding, service design and legislation. “That is uncomfortable, and it is slow,” Asmal said.
Research by the WHO and the Lancet Commission, published in 2022, identifies people with lived experience as central to ending stigma and discrimination—not merely campaign subjects, but leaders and co-leaders. Rabie said their roles on advisory boards, committees and councils can bring insights into living with a condition, receiving treatment and experiencing society. “They can show us what good care may mean,” he said.
The South African Journal of Psychiatry introduced 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. The article was an Op-Ed by Florence de Vries, chairperson of the Ithemba Foundation, a South African mental health awareness NGO. Daily Maverick said the views were those of the author or authors and did not necessarily represent views supported by the publication.