Robots, polony and the fight to keep schizophrenia patients out of hospital - Bhekisisa

- In South Africa, people with schizophrenia often cycle between hospital and home because there’s little mental health support in their communities.

- An Eastern Cape study tested whether support groups led by people with lived experience of mental illness could help break this cycle.

- Just 2% of participants who received medication and attended recovery groups relapsed into psychosis during the study, compared with 17% of those receiving medication alone.

- But even a low-cost solution struggled to survive. The reason? Poverty — and something as basic as food.

In today’s newsletter, Tanya Pampalone looks into peer-led recovery for people with schizophrenia. Sign up for our newsletter today.

After the depression set in, after the schizophrenia diagnosis came, the brothers would go to the hospital by taxi. But first they had to get to the taxi stop. This is where the seemingly simple became complicated.

They would leave their home on the outskirts of Gqeberha, after Phumelele Ngalo already spent far too much time convincing his sibling to get dressed and bathed, and about halfway there, Lithemba would stop, refusing to move, just staring at his brother. Not so much defiant as disappeared.

“And then I’ll say, ‘Bana, come on, let’s go’,” Phumelele explains how he would eventually snap, exasperated. “Then I would have to go back and take him by his hand, and we would go to the taxi together. Even when we got into the hospital, in the waiting room, he would stand up and go and sit on another seat. And I’m like, why can’t you just be steady? Why can’t you just sit next to me? You know, so it’s all those kinds of things.”

Phumelele, who is now 37, has been the main caregiver for Lithemba for the past 10 years. That was when schizophrenia was officially named by the doctor, which was after years of believing it was severe depression that kept Lithemba locked in his room, motionless, refusing to speak or bathe.

Phumelele and Lithemba slept in the same bed growing up, and were always close. So it made sense Phumelele would end up being the one to look after his younger brother. Both parents had already passed by the time Lithemba was diagnosed and, while they still stayed together with their older sister and her family, Phumelele was the person Lithemba would listen to when he wasn’t feeling well.

But it has been over a year that Lithemba has been gone. He’s back at the inpatient mental healthcare facility across town.

“I spoke to him on the phone last week and he was asking, ‘When are you coming to discharge me?’ And I’m like, ‘No, I have to get a report from your psychiatrist. But when you come back home, you have to take your medication. Otherwise, you’re gonna go back there again.’”

The brothers are caught in the revolving door of mental healthcare services, which takes Lithemba away from his family and to long-term facilities and back again. A few years ago, the two of them talked to researchers who wanted to better understand the needs of people living with severe mental health conditions in Nelson Mandela Bay. The Ngalos’ perspectives were used to build and pilot community-based recovery groups, led by peers in the area — groups that have the potential to help people like Lithemba stay healthy, at home and out of costly inpatient care.

Never cured, only managed

Schizophrenia is a haunting condition that manifests in hallucinations and delusions. Those who have it may see things that aren’t there, hear whispers of disembodied voices, their brains ensnared in a series of tricks and teases, coaxing them into believing something that isn’t. That people are following them, or that they are a deity or that someone they know is no longer really who they say they are. Some, like Lithemba, become catatonic, retreating into themselves, silent, unreachable.

But similar to someone with a chronic illness such as diabetes or heart disease, with medication and healthy living — the right food, regular sleep, exercise — schizophrenia can normally be managed. Without it, severe mental health conditions can trigger psychosis, where reality becomes an apparition.

It’s not at all uncommon for people to stop taking their pills, like Lithemba. He starts to feel better so, he reasons, he doesn’t need it any longer. Besides, the medication makes him feel tired.

For some, medication comes with side effects that leave them exhausted or with hands that shake uncontrollably. But it is the medication, alongside the help of family caregivers — whose roles extend to helping their loved ones bathe, dress, eat, get to the clinic and manage their finances — that keeps them well and out of long-term facilities, where beds are scarce and healthcare costly.

Yet in the public sector, medication is often the only outpatient support on offer.

As Phumelele sees the system: “You just get a refill of the medication, full stop. The nurse will sign and stamp and tell you to take your medication and to come back in another month.”

It isn’t enough, says Charlene Sunkel, who founded Aves Mental Health, formerly known as the Global Mental Health Peer Network, in 2018. “Medication is just part of your recovery,” she says. “The rest is your relationships with your family and your community … and having a purpose in life.”

Sunkel is an advocate of the peer-led recovery model for severe mental health conditions.

Think of it as a sort of Alcoholics Anonymous (AA) approach, where people who live with mental health conditions come together, peers sharing their experiences, where the specialists are others like them, rather than people in white coats. In AA, those who have more time in recovery — that is, those not drinking and trying to live a healthier life — become mentors to those with less time between them and their drink. You are never a recovered alcoholic; your condition is never “cured”. Addiction, like severe mental health conditions, means constant recovery, managed for a lifetime.

The Aves consortium is made up exclusively of those with lived experience of mental illness, something that is becoming increasingly recognised as an integral part of policymaking and mental health services globally. Aves trains advocates, mainly from low- and middle-income countries like South Africa, who go on to train others with mental illness in a constant cycle of knowledge-sharing. They work with the World Health Organisation and institutions like Harvard University in the United States, where they are creating a teaching series focused on how those with lived experience can become involved in studies, as well as helping researchers understand how to include them as partners rather than specimens.

READ MORE | THREE MENTAL HEALTH BREAKDOWNS. ONE RURAL CLINIC. AND A LESSON IN UBUNTU IN A TIME OF SCARCE RESOURCES

“When I was told I had schizophrenia, I was literally told I have no rights,” says Sunkel. “I couldn’t go anywhere unaccompanied. I was told I would never achieve anything. I probably lost nine years of my life just because of that mindset.

“But that change can start at the community level … where the person is empowered to actually lead their own recovery and treatment plans. I was just given medication and told, ‘Okay, in the morning you need to drink this one, you must take this one at night,’ not telling me why, what it is, how it works. I may not understand the chemicals and high terminology, but even if you draw pictures for me, I need to know.”

Crash course

Pictures and stories became the core discussion material used in a study co-led by Carrie Brooke-Sumner, a researcher at the South African Medical Research Council (SAMRC), and Laura Asher, an associate professor in public health at the University of Nottingham in the United Kingdom. The Prize study was designed to test whether the peer-led recovery model for those living with psychosis, the hallucinations and delusions that can affect people with severe mental health conditions, would work for those living in townships in the Eastern Cape, where poverty levels are high and education levels low. Places where, outside a disability grant, family is often the only support.

To formulate the study, Brooke-Sumner and her research partners started by interviewing family members and caregivers and those with mental health conditions to figure out what their needs were.

Once they had that understanding, the researchers worked with Gill Faris, a former psychiatric nurse with a master’s in adult education who spends her days, as she says, “putting these high-level concepts that sit on university hilltops into everyday language”.

The challenge, though, is that first you have to train the trainers. In this case, it would be the social workers who get the initial, detailed training. They were the ones teaching what they learned to those with lived experience, who would then be given another set of materials to help them lead and maintain the peer groups.

The materials (found here and here) are a sweeping, high-level crash course in mental health issues and management, culturally aware, rooted in discussions of those with lived experience, and produced in isiXhosa and English.

The stories move between the perspectives of the caregiver and those living with mental illness: stories of Nomzamo, who looks after an adult son who is tired and struggles to do anything around the house, and Gcobani, who lives with a mental health condition, and says people look down on him and make decisions without consulting him. There’s also Ntando, who, after years of struggling with alcohol and dagga, has started budgeting his money and is thinking about putting some of it into a stokvel.

The stories and worksheets gave group members a chance to work through their own issues. They helped them figure out how to identify their complex emotions, triggers and life stressors. It allowed space to talk about the difficulties around jobs, generating income and dealing with finances — a recurring topic for the group members.

It also helped people set goals, which is at the core of the recovery model.

“Short-term goals, medium goals, long-term goals,” Sunkel, who talked with the researchers early on about their plans for the study, explains. “A short-term goal for me at one point was to get up at 7 o’clock and not sleep the whole day, to walk around, get some exercise. Recovery is about developing a person’s potential; everybody’s got something that they’re good at.”

Seeing red

The groups included 92 isiXhosa-speaking people living with psychosis, along with 47 primary caregivers linked to them, and ran from April 2022 to February 2023 in seven locations in Nelson Mandela Bay. The researchers partnered with social workers from the nonprofit Indlela Mental Health (formerly Port Elizabeth Mental Health Society), with the idea that the groups would continue after the Prize study ended.

The results were impressive.

Brooke-Sumner and her colleagues found that only 2% of those who took medication and went to recovery groups ended up relapsing into psychosis during the study period, compared with 17% of those treated with medication only. Recovery groups also helped those who had jobs to continue working. Those in the groups took off about 1.5 days per month, compared to those on medication only, who took off eight days.

The two-hour sessions — which were led by a social worker for two months and then by a peer for three — started with a robot.

“You know the colours of the robot — the green, orange, red?” explains Thabisa Mrwetyana, one of the social workers who helped run the groups. “So whenever we would start a session, we would say, ‘Let’s check in.’ Then you would say something like, ‘Hi, group members, today I’m green. I had a wonderful weekend. This and this happened. I went to visit my family.’ Or you say, ‘I’m orange. I started new treatment, so I’m not doing so well.’”

Red is where you really don’t want to be — that point where you aren’t able to do basic activities like bathing or cooking or going to work.

“What the recovery groups brought for people was the understanding that you are the driver of your own health,” says Bongwekazi Rapiya, a researcher from the SAMRC who managed the project. “You are the one who knows when you are moving from green to orange, and we do not want you to go to the red. So it is important for you to learn what triggers you and to move away from that.”

Discussions were followed with time for socialising, with simple snacks provided; white bread, polony and cheese or peanut butter and jam and juice, coffee or tea, that people prepared together.

“We found that the groups helped people take their medication regularly because there was food,” says Rapiya. “That meant that after eating at the group, a person would be able to take medication because they didn’t have food at home.”

It was that which would become the final blow to the last standing peer-led group, which had been meeting up until September this year. When Rapiya called her contact at Indlela last month to find out why, it came down to one word. Food.

Because even this low-cost, community-based mental health recovery model had its limitations when met with the wrenching reality of the South African project, where poverty and unemployment make it almost impossible for too many people to move beyond the lowest level of Maslow’s pyramid.

As the Prize researchers noted in their most recent paper, which was published in Plos Global Health in September, “mental health and financial security are so tightly entwined it is arguably imperative to address the economic situation of people with severe mental health conditions alongside other aspects of treatment services. However, the most effective, feasible, acceptable and ethical way to support economic needs is unclear.”

One of the men interviewed called it as he lived it: “We cannot work in restaurants because they say we are dirty. You know, even on the TV they laugh at mental illness; they make fun of it. For instance, if I want to become a nurse, I won’t be able to get a job in the hospital because they will say I will kill the patients. You get undermined in all aspects. They don’t understand this illness because it is not happening to them.”

Hospital, again and again

Bharti Patel is the person you need to know if you are interested in community-based mental healthcare in South Africa. For the past 17 years, she has led the advocacy nonprofit South African Federation for Mental Health, which represents 16 independent member organisations which provide mental healthcare services in communities, including Prize study partners, Indlela. She loves studies like Prize — they provide the evidence advocates need to show policymakers what she already knows: low cost peer-led recovery models, designed with the input of the community, can help put a wedge in the revolving door of care.

“You have to look at the environment in which people live,” she says. “If you come from an impoverished community where there are challenges with water, electricity, scarcity in jobs, and now you have a mental health condition, how do you actually climb up all those challenges before you can even focus on your own need of recovery? If you’re a parent with a mental health condition, and you have children starving in the home, how are you going to prioritise your own mental wellbeing?”

Patel would like to see part of the more than 80% of the mental healthcare budget that currently goes to expensive inpatient care follow patients when they return to the community.

“What happens is that when [someone is] discharged, there’s not enough funding and resources at community level, and the person relapses and goes back into hospital, again and again. It costs our state huge amounts of money to keep people in hospitals … there’s not enough beds. They can’t keep up with the number of admissions.”

A place to sit and feel free

If you met Lithemba on the street, when he’s healthy, you wouldn’t know that he is living with a severe mental illness. He’s more like himself, more like the teenager who did well in school and spent time going out with friends.

But that’s not how people living with schizophrenia are seen.

Rapiya wishes we’d be able to talk about mental health issues as well as people are able to talk about, and understand, tuberculosis or HIV. Like the others from the Prize study we spoke with, she says the experience was a reminder to give grace and kindness to ourselves and whoever we meet.

Checking whether you are green or orange just might be good practice for everyone. Maybe it will help us from seeing red in this global age of uncertainty.

“There’s a lot people are going through,” she says. “They want a safe space where they can talk without the worry of being gossiped about, a place to sit and feel free that, here, I’m not going to be judged.”

Phumelele tried to reach his brother by phone so that Lithemba could speak to Bhekisisa himself, rather than Phumelele speaking for him, as he has done so many times before. But work and school — Phumelele is on the night shift at Continental Tyre and studies accounting part-time through Unisa — made coordinating a call with a newsroom deadline difficult.

But Phumelele will see his brother next week. The whole family is planning a visit to the care facility about 45 minutes from home for Lithemba’s birthday. He will be 34.

“You can’t spend a whole year without your sibling being home,” Phumelele says. “It’s not as if he’s out there for work. I miss my brother. He’s there all alone and maybe he feels that we have abandoned him, that he’s a burden or whatever. Those are the kind of things I think of sometimes.”