Deborah Phehla choked to death on paper, cardboard and plastic she had swallowed. Her patient file warned that she would eat such debris without supervision. Florence de Vries wrote in an op-ed for Daily Maverick that the warning never reached anyone able to act.
Phehla was one of hundreds of mental healthcare patients relocated from a Life Esidimeni facility. Her records included a case history, periodical reports and documented needs. The paperwork existed. Accountability didn't.
A Paper Trail Nobody Followed
The details matter. Phehla had no say in decisions about her care, and the documentation that might have protected her sat unused. Ten years after her death, the World Health Organization (WHO) is marking World Mental Health Awareness Month this month with a campaign urging people with lived experience of mental illness to help shape decisions affecting their care.
The WHO said 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." It 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."
What the Experts Say
Professor Laila Asmal, a psychiatrist and researcher at Stellenbosch University, pointed to the Life Esidimeni tragedy as South Africa's own painful illustration. "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," Asmal said.
Her account is pointed for anyone who believes bigger budgets alone fix broken institutions. Asmal said family members spoke out in Life Esidimeni but weren't heard. Documentation existed, but decision-makers didn't act on it. "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. Programmes often draw on literature and clinical observation, he said, reflecting what practitioners think people need rather than what people say they need. Stigma, Rabie said, drives that knowledge underground, suppresses open conversation and deepens isolation and withdrawal.
He also made the case for peer-driven recovery. "Lived experience testimonies can facilitate peer support and inspire hope for recovery among other people living with mental health conditions," Rabie said.
Voices Already Speaking Up
Since the start of the Covid-19 pandemic, South Africans including Lasizwe Dambula, Trevor Noah and Bonnie Mbuli, along with hundreds of others, have spoken publicly about mental illness. De Vries wrote that their public profiles have helped humanise mental health conditions and loosen stigma. Individuals chose to speak; no government programme started this shift.
Research from the WHO and the Lancet Commission, both published in 2022, identifies people with lived experience as central to destigmatisation. They're described not merely as subjects of campaigns but as leaders and co-leaders. Evidence indicates that people with lived experience in leadership roles bring distinct expertise as consultants and members of advisory boards, committees and councils.
Where Change Has to Happen
Asmal said lived experience matters at three levels: where care is delivered, where knowledge is produced and where policy is made. In services, people can become peer-support workers and recovery-group facilitators rather than only recipients of care. In research, their expertise can shape what is studied and accepted as evidence. In policy, it can give them a place in decisions about funding, service design and legislation.
She was frank about the difficulty. Genuine inclusion requires hospitals, research institutions and government departments to shift who holds authority, without tokenism. "That is uncomfortable, and it is slow," Asmal said.
The South African Journal of Psychiatry introduced a lived experiences section in 2025, aiming to recognise the expertise of people facing, living with and recovering from mental illness. Asmal, an associate editor of the journal, said "what they know from the inside of that experience belongs at the centre of how psychiatry understands, researches and practises care."
De Vries chairs the Ithemba Foundation, a South African mental health awareness NGO. Daily Maverick noted that the piece is an op-ed and that its views are those of the author.
Why This Matters:
The Life Esidimeni deaths weren't caused by a lack of information. The warning was in the file. What failed was the chain of accountability between a record and a decision-maker. For taxpayers who fund public mental healthcare, that's the sharper lesson: systems need clear lines of responsibility and channels that let patients and families be heard, not just larger allocations. Asmal's own words point there, describing a system that never built the habit of listening. Peer-support roles and advisory seats are modest, practical reforms, but Asmal concedes they're slow and uncomfortable for institutions to adopt. Whether South Africa's hospitals and departments will actually shift authority, rather than add token seats, remains the open question.