Advocacy groups launch website to document stories of Life Esidimeni victims

The stories of 144 mentally ill patients who died after being transferred from Life Esidimeni healthcare facilities to NGOs are being kept alive.

The SA Depression and Anxiety Group (Sadag), Section27 and the SA Human Rights Commission (SAHRC) on Thursday launched the Life Esidimeni online memorial and advocacy project.

Author Harriet Perlman said the website was an ongoing memorial and advocacy project for the families who lost loved ones in the Life Esidimeni tragedy.

“It's a story of unimaginable horror and hardship, tenacity ... of ordinary people. It demonstrates the power of people to find strength in one another, organise and fight back. We need everyone in this country to see the story of what happened, how it happened, and why,” Perlman said.

She said families of those who died in the tragedy were still seeking answers.

“The website tries to capture what happened by building a story with words and pictures. It’s a story of loved ones who died in the care of the public health system, from neglect and starvation. It was a system meant to protect them. Then it’s a story of the families left behind.”

Perlman said the team that developed the website travelled to the victims’ family homes to capture images of them holding photos of their loved ones. Some were taken on the last day their loved ones saw them alive. Others were taken at family events.

“Everyone spoke of their loved ones and the horror of what happened remained so raw five years later. Everyone spoke of the callous disrespect they often encountered. They spoke of the desperate months spent looking for their loved ones.

“We were made aware of the long distances they travelled to look for their loved ones. They all spoke of the great anger they felt because they did not know how their loved ones died and that those responsible have not faced the consequences,” Perlman said.

The website, said Perlman, gives the public an insight into the stories of people, what happened and “the story for justice and the coming together of a powerful social movement, the story of mental health in our country and how do ordinary people in desperate need of services get help. We move to stories that have not been heard”.

A feature film about the Life Esidimeni tragedy is also in the pipeline.

“This is an ongoing project to ensure the story doesn't go away but something gets done to prevent it from happening again,” Perlman said.

Christine Nxumalo, speaking on behalf of the families, said: “We as the families are happy to be part of the process. The families believe that telling our stories is important until things change and the way people with mental illness issues are treated.”

She said the website was important as it would help many more families.

“The aim is to change the way mental health is treated in SA. One in 10 people get treated for mental illness. The number is alarming. It means many of us go untreated and don’t get diagnosed. We also want to extend the interviews to survivors as well. It’s important to have their side of the story,” said Nxumalo.

Cassey Chambers from Sadag said the website aimed to empower people on how to report mental health issues at facilities.

“It’s meant to share and give a platform for people to report mental health issues, encourage people to share their mental health issues.” The website was also designed to normalise mental health, she said.

“We’ve created the website as a reporting tool to help people navigate the healthcare system. We have set up a dedicated SMS number for people to report if they did not get medication or they were denied help.

“We give guidance on how to report a facility. One of the key things is to allow people to share issues they are dealing with. There is an online form they can fill in to get help from a counsellor within 24 hours. We encourage everyone to share their stories.

“As Sadag we will follow up and make sure the issues are raised to the relevant people. We want to walk step by step with the people that reach out so we can all look at fixing the mental health system and make sure we can prevent another Life Esidimeni from happening again.”

Section27 head of health rights programme and lawyer Sasha Stevenson gave an update on the inquest the National Prosecuting Authority is launching into the Life Esidimeni deaths.  

“The inquest was the next stage in the accountability for the Life Esidimeni disaster,” she said. “It was clear there were three levels of accountability the families needed. The first layer was for the state to take accountability for what happened. This was achieved to a large extent through arbitration. We heard a lot of what happened. We had the state formally taking accountability for what happened.”

The second layer of accountability was professional accountability. This step has moved slowly as there has not been finalisation of disciplinary processes that should have happened.

“The inquest gives us an opportunity to find out more about what happened. We look forward to this opportunity to present evidence to the judge.”

She said Section27 had been briefed by 35 families to represent their interests in the inquest.

TimesLIVE