WELLNESS: Lived experience can connect the healthcare dots when it gets a say

Deborah Phehla died choking on the paper, cardboard and plastic she had swallowed. Her patient file warned that without supervision, she would eat exactly this kind of debris. The warning existed, but it failed to reach anyone with the power to act on it.

Phehla’s story was not unheard. As one of hundreds of mental healthcare patients relocated out of a Life Esidimeni facility, she had a paper trail: a case history, periodical reports and documented needs. What she didn’t have was a say.

Ten years after Phehla’s tragic death, the World Health Organization (WHO) is marking World Mental Health Awareness Month this month by calling on people with lived experience of mental illness to shape the decisions that affect their care.

The WHO’s statement says that 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.”

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 idea with this year’s theme is to invite people with lived experience into the rooms where decisions get made.

In recent years, particularly since the start of the Covid-19 pandemic, South Africans like Lasizwe Dambula, Trevor Noah and Bonnie Mbuli – along with hundreds of others – have shared their experiences of mental illness in the media. By speaking openly, they have used their public profiles to humanise mental health conditions and help loosen the grip of stigma.

Professor Laila Asmal, a psychiatrist and researcher at Stellenbosch University, says the growing focus on people with lived experience reflects a widening body of evidence: in many fields, services become stronger and more effective when they are 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,” Asmal says.

The notion of people with lived experience became prominent after the pandemic when millions of people spoke publicly about their mental health in ways that were impossible to ignore, says Asmal.

“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.”

Value of lived experience

Professor Stephan Rabie, chief research officer in the University of Cape Town’s Department of Psychiatry and Mental Health, believes lived experience remains undervalued in research, care and policy alike. Too often, he says, programmes are built from literature and clinical observation – from what practitioners think people need rather than what they say they need.

Stigma, in his view, is what pushes this knowledge underground in the first place, driving open conversation into silence and deepening a cycle of isolation and withdrawal. Testimony breaks this cycle.

“Lived experience testimonies can facilitate peer support and inspire hope for recovery among other people living with mental health conditions,” Rabie says.

The findings of research from the WHO and the Lancet Commission, both published in 2022, on ending stigma and discrimination in mental health point to people with lived experience as central to destigmatisation – not as subjects of anti-stigma campaigns, but as their leaders and co-leaders. Evidence suggests that when people with lived experience hold these leadership positions, they bring unique expertise to the work when they take on roles of consultants, members of advisory boards, committees and/or councils.

As Rabie puts it: “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.”

Power and shifts in perspectives

For Asmal, lived experience matters wherever care is delivered, knowledge is ­produced and policy is made. “At the service ­level, people with lived experience move beyond being recipients of care to become peer-support workers and recovery-group facilitators.

“At the knowledge level, their expertise helps determine what is researched and what is accepted as evidence. And at the policy level, it gives them a seat at the table where decisions about funding, service design and legislation are made.”

Running through all three levels is a question of power. As Asmal puts it: “Genuine inclusion requires institutions such as hospitals, research institutions and governmental departments to shift who holds authority, and to do so in a way that is not tokenistic. That is uncomfortable, and it is slow.

“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.”

In 2025, the South African Journal of Psychiatry introduced a lived experiences section to deepen understanding of mental health and recognise the unique expertise of people facing, living with and recovering from mental illness. Asmal, who is an associate editor of the journal, says the section was introduced in recognition of people living with and recovering from mental illness bringing irreplaceable expertise.

“What they know from the inside of that experience belongs at the centre of how psychiatry understands, researches and practises care,” she says. DM

Dr Florence de Vries is chairperson of the Ithemba Foundation, a South African mental health awareness NGO.

This story first appeared in our weekly DM168 newspaper, available countrywide for R39. The e-edition of DM168 is now free for readers who are signed into their Daily Maverick account. Click on the cover of the newspaper below to access the e-edition.