Deborah Phehla died after choking on paper, cardboard and plastic she had swallowed, though her patient file warned she would eat such debris without supervision. The warning never reached anyone able to act. Phehla was one of hundreds of mental healthcare patients moved from a Life Esidimeni facility. Her records documented her history and needs, but she had no say in decisions about her care.
Who Holds Authority
Professor Laila Asmal, a psychiatrist and researcher at Stellenbosch University, called Life Esidimeni a failure of resources and planning, and the endpoint of a system that hadn’t learned to listen to the people it served. “Family members spoke out, but they were not heard. Documentation existed, but it was not acted on,” she said.
This month, the World Health Organization is using World Mental Health Awareness Month to urge people with lived experience of mental illness to help shape decisions about their care. The WHO says the campaign aims to “recognise their knowledge as a vital form of expertise” and calls for their voices to shape policies, services and decisions affecting their lives.
Asmal said hospitals, research institutions and government departments must shift who holds authority if they want inclusion. “That is uncomfortable, and it is slow,” she said. The campaign wants people with lived experience in decision-making rooms, but the account doesn’t describe those institutions transferring authority.
Whose Knowledge Counts
Professor Stephan Rabie, chief research officer in the University of Cape Town's Department of Psychiatry and Mental Health, said research, care and policy still undervalue lived experience. Programmes, he said, often draw on literature and clinical observation—what practitioners think people need, rather than what they say they need.
Rabie said stigma drives this knowledge underground, stifles open conversation and deepens isolation and withdrawal. “Lived experience testimonies can facilitate peer support and inspire hope for recovery among other people living with mental health conditions,” he said.
Research from the WHO and the Lancet Commission, published in 2022, identifies people with lived experience as central to ending stigma and discrimination. It presents them not just as campaign subjects, but as leaders and co-leaders. According to evidence cited in the article, people in leadership roles can serve as consultants and sit on advisory boards, committees and councils.
At the service level, Asmal said, people with lived experience can work as peer-support workers and recovery-group facilitators, not just receive care. They can also shape what researchers study and accept as evidence. At the policy level, they can take part in decisions on funding, service design and legislation.
The Limits of Consultation
Since the Covid-19 pandemic began, South Africans including Lasizwe Dambula, Trevor Noah and Bonnie Mbuli, as well as 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. Public discussion, though, doesn’t itself give patients authority over services or policy.
In 2025, the South African Journal of Psychiatry introduced a lived experiences section. As an associate editor, Asmal said people facing, living with and recovering from mental illness bring expertise that belongs at the centre of how psychiatry understands, researches and practises care.
The account gives no figures on healthcare profits, budgets or staffing. Nor does it describe an organized labor campaign. It records a patient’s documented needs going unheeded and a proposal to include patients in decisions about services, funding and law. Asmal said a system that doesn’t structurally value lived experience will ignore it, even when it is loud.