Woman Living With Schizophrenia Thrives With Care, Social Support

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In Peru, care continues for patients with chronic mental health conditions

Posted on June 1, 2022

Jessica (right) speaks with health workers from Socios En Salud. (Photo by José Luis Diaz Catire / Partners In Health)

Jessica used to run away from home. Then her mother, desperate to keep Jessica safe, found a way to keep her there: a chain around her waist.

It wasn’t a punishment. It was a last resort.

Since she was 17 years old, Jessica has lived with schizophrenia, a mental health condition that affects 24 million—or 1 in 300 people—worldwide and can lead to hallucinations, delusions, disorganized thinking and behavior, and social isolation. Life expectancy for people living with schizophrenia is reduced by 15-25 years.

The 34-year-old used to be a familiar face around her neighborhood in Comas, an impoverished district in Lima, Peru, where she sold chewing gum, candy, and cigarettes. Although she was on treatment, her symptoms took a turn.

She began to hear voices that were even louder and more disruptive. She ran away. She once tried to set the house on fire.

That’s when her mother Irene, out of desperation, gave her sleeping pills and put a chain around her waist. Sedated, Jessica was unable to continue her schizophrenia treatment and spent her days sleeping on a mattress on the floor.

Even before the chain, the house was an unstable home.

A shack made of corrugated metal and plywood, with half of the roof unfinished, the house clung to the side of a steep hill, 170 steps up from where the paved road ended. Accessing the main room where Jessica lay chained meant winding through a narrow passageway formed of mounds of trash her mother hoarded and sold for scraps in the market. Stray cats, dogs, and chickens perched on the piles and hopped along the corrugated rooftop. Strangers also came and went through the open doorway, including teenagers who stole Jessica’s identity documents.

The neighbors knew Jessica needed help. But they didn’t know where to go. It wasn’t until a police report was filed against Jessica’s mother, for abandonment, that she was connected to Socios En Salud—and support.

Mental Health Care

Socios En Salud, as Partners In Health is known locally, has worked in Peru since 1994, when it responded to a deadly outbreak of multidrug-resistant tuberculosis. In the decades since, Socios En Salud has provided medical care and social support to hundreds of thousands of people in Lima and beyond.

Socios En Salud’s mental health program has served patients with conditions ranging from depression and anxiety to schizophrenia to other severe mental disorders. It’s rooted in a collaborative, comprehensive, and community-based model, dispatching teams of psychologists, social workers, and community health workers—local residents trained to provide basic health services—to patients’ homes to provide medications, therapy, and support in navigating the health system. Most people globally do not have access to formal mental health care, even as mental health is one of the leading causes of disability worldwide.

Socios En Salud has cared for patients with schizophrenia for years through its community health program, including 23 community health workers specializing in schizophrenia care and “safe houses”—homes providing 24/7 care for women with chronic mental health conditions and without family caregivers. In 2015, Socios En Salud launched the first-ever safe house in partnership with the Ministry of Health—a house that has since provided a model for care and inspired the Ministry of Health to build 50 more safe houses nationwide.

Irene searches for her ID with the help of a Socios En Salud worker. (Photo by Melissa Estefany Toledo Soldevilla / Partners In Health)
“Forgotten Cases”

Socios En Salud staff visited Jessica in November 2021.

Along with staff from the community mental health center in Wiñay, Socios En Salud staff had come on a mission: to help Jessica and her mother understand that free mental health care and social support were available.

Jessica’s mother Irene greeted them and led them inside. The team made their way through a narrow passageway formed from solid walls of trash and found Jessica, chained to a wooden pole in the middle of a clearing that served as their main room—her hair tangled, her clothes disheveled, and her face unwashed. She was disoriented and speaking incoherently.

Her health wasn’t the only concern the team had. She and her mother had no electricity, running water, or sewage. There was no place to prepare food, and the two women relied on leftovers Irene scrounged from the nearest market. Their living space was cluttered with bags, bottles, and garbage; flies swarmed around.

After speaking with Jessica and Irene, Socios En Salud and health center staff identified three main goals: help Jessica apply for a new national identity card and disability card, refer her to the health center for ongoing medical care, and connect her and her mother with free food and stable housing.

“Stories like Jessica’s are plentiful in our country,” says Milagros Tapia, a psychologist with Socios En Salud. “Unfortunately, they are forgotten cases, victims of stigmatization, and without access to health services.”

Over the next several months, Socios En Salud and health center staff worked relentlessly to help Jessica access those health services, regularly making house calls to provide medications and accompaniment as she navigated the health system. With Socios En Salud’s support, Jessica restarted her medication and scheduled check-ups at the health center in Wiñay. She also received a COVID-19 vaccine.

Week by week, her condition improved. The voices and hallucinations subsided. She was no longer trying to run away or harm herself. The team noticed changes in her appearance, too. Her face and hair were washed. Her clothes were clean. And in late December, for the first time in years, the chain came off.

Jessica and her mother stand with Socios En Salud staff outside of their home in Comas. (Photo by Melissa Estefany Toledo Soldevilla / Partners In Health)
Social Support

Pills and injections weren’t the only resources Jessica needed to stay healthy and manage her mental health condition. Socios En Salud staff knew that social support—such as food, housing, and transportation—would also be crucial.

To help Jessica and her mother access free meals, instead of searching for food scraps at the market, Socios En Salud provided foods that didn’t require boiling, like crackers and tuna, and met with community leaders to help reopen a neighborhood soup kitchen, where daily hot meals were provided for free.

Socios En Salud also provided support for transportation, including fares for taxi rides to the local health center for Jessica’s appointments, and housing, with the goal of helping her move to safe house. Additionally, the team helped Jessica apply for a national identity card and disability card, which would make her eligible for government benefits.

Even as Jessica’s medical care and social support fell into place, maintaining her health was often a day-to-day struggle. Following her treatment was challenging given her situation. Her mother, who also lived with a mental health condition, also struggled at times to be a caregiver for her daughter.  

But Socios En Salud, the community mental health center, and Jessica’s community—including her neighbors and local government—were there to support her and her mother, each step of the way.

“Behind Jessica, there are many people helping her,” says Belinda Pineda, a neighbor and president of the neighborhood council in Jessica’s community. “There is the NGO, the community mental health center, the community itself, and the neighborhood council that supports them. The progress and improvement in Jessica’s health is evident. I feel very happy for Jessica.”

That support came from unlikely places, too.

In January, Socios En Salud staff found the phone number of Jessica’s estranged sister, Rosa, and gave her a call. Rosa was willing to help in any way she could. She agreed to help Jessica follow her treatment plan, attend her appointments, and hosted her in her home for a few weeks. She also helped Jessica pick up her national identity card—issued in March, after months of advocacy by Socios En Salud.

As Jessica continued her treatment, with the support of Socios En Salud and her community, she experienced a feeling she hadn’t in years.

“I feel more confident in myself,” she says. “I now go with my mother to the market and we buy groceries together. I am taking my pills daily and doing everything I can to get better…I now know I am not alone.”

Originally published on pih.org

When we think of health system strengthening at Partners In Health (PIH), we always refer to five key elements: staff, stuff, space, systems, and social support. We call them the “five S’s” and use them to guide our work every day. Click here to learn more about the five S’s, with concrete examples of PIH’s work.

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