March 26, 2017
March 26, 2017
Families in rural Nepal, often isolated and impoverished, struggle to care for children with special needs. Healthcare is scarce in mountain villages and mental healthcare is even harder to find, leaving mentally disabled people without basic treatment or even diagnoses.
KAVREPALANCHOWK DISTRICT, NEPAL — Chandra Dhoj Lama, 24, knows it’s time to eat when he sees smoke from the cooking fire and steam from the rice pot.
He can’t hear and he can’t speak. He sits in the corner of the main room of the family’s home to wait for his food. When he wants a second helping of rice and vegetables, he shuffles toward his stepmother. His feet are chained.
INSIDE THE STORY: Global Press reporter Shilu Manandhar worries that readers will draw the wrong conclusion when they see her photos of a mentally disabled man. In reality, she says, families in rural Nepal have few options for caring for disabled loved ones. Read the blog.
Dhoj Lama has had the chains for about a year, since he was found after having been missing for two months. The family had no leads for his whereabouts until, by chance, someone who knew them reported that Dhoj Lama had been seen in a village that’s a 10-hour bus ride from the family home.
“After that we chained his feet so that he does not get lost,” says Anita Tamang, 40, Dhoj Lama’s stepmother.
Dhoj Lama’s father, Tek Bahadur Lama, is a carpenter. He leaves the house at 7 a.m. and returns home when the sun sets. Tamang collects firewood and grass in the late morning and early afternoon, then tends cattle at home. The family’s village is in the heart of a largely-rural nation where road access is considered a luxury.
Sometimes, when Dhoj Lama gets really angry, he hits people. He refused night after night to sleep on the bed his parents provided, so they got rid of it. He sleeps on the floor. He can’t fully dress himself.
No one knows for sure why Dhoj Lama behaves this way. Like many mentally disabled people in Nepal, Dhoj Lama has never been examined by a psychiatrist. Some parents take their disabled children to local shamans, but for most, the prospect of traveling to Kathmandu, the capital, to get formal treatment is out of the question. In many cases, family members who care for the mentally disabled don’t know that help is available.
That’s changing, however slowly. When an earthquake killed nearly 9,000 people and caused destruction across huge swaths of Nepal in 2015, it highlighted the need for more mental health services. Doctors then told Global Press Journal that the country of 29 million people had just 110 psychiatrists and about 400 general counselors, and noted a huge, unmet need for mental healthcare for earthquake survivors. (Read that story here.)
In the months after that earthquake, the government began training health workers throughout the country to provide psychosocial support and psychiatric care. The health workers were also trained to refer serious mental cases to tertiary care.
In January, Mental Hospital Lagankhel, in collaboration with the World Health Organization, began to train local health workers in Baglung, Kailali and Ilam districts, says Basudev Karki, a psychiatrist there. The training will eventually expand to other districts.
The program, called the WHO Mental Health Gap Action Programme, was launched in 2008 to improve mental health services in low and lower middle-income countries, including Nepal, by creating guidelines for countries that need to provide better mental healthcare.
The Nepalese government is taking its own steps to improve mental healthcare.
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A plan outlining steps to deputize health workers to prescribe medicine and raise awareness among communities about mental health treatments has been presented to the health ministry, says Madhab Prasad Lamsal, deputy health administrator for the Department of Health Services, Leprosy Control Division. The plan will likely be approved and set into motion this year.
“Our health system had not given priority to mental health before but now mental health is added as an essential health component,” Lamsal says.
Lack of mental healthcare is a global problem, especially in impoverished countries. Up to 85 percent of people with severe mental disorders in low-income and middle-income countries receive no treatment, according to the WHO’s Mental Health Action Plan 2013 – 2020. Almost half the world’s population lives in a country where there is one psychiatrist or more to serve 200,000 people, that report notes.
There is just one psychiatrist for about every half a million people, and one psychologist for every 2.5 million people in Nepal, according to WHO’s 2011 Mental Health Atlas.
Just under 2 percent of Nepalese people are disabled, and only 6 percent of those who are disabled have a mental disability, according to Nepal’s most recent census data from 2011, but health officials and experts say those numbers aren’t accurate.
Census workers aren’t trained to identify people who are disabled, and family members often don’t reveal whether someone in the household is disabled, says Manish Prasai, administrative manager of National Federation of the Disabled — Nepal.
For rural families, daily life can be particularly challenging if a family member has a condition that, like Dhoj Lama’s, causes them to wander off.
“To prevent any harm coming to the child they usually tie them or keep them locked,” says Lamsal of the Department of Health Services. “They do this because they love and care for their child.”
For most disabled people in Nepal, there is no early diagnosis, no early intervention and no early treatment — and often, no treatment at all.
The country’s first psychiatric outpatient facility opened in 1961 at Bir Hospital in Kathmandu. That facility later became the 50-bed Mental Hospital Lagankhel in Lalitpur.
But most rural people get most or all of their care, including mental healthcare, at the 3,816 health posts scattered throughout the country.
“The health posts are not equipped for patients with mental disability,” Prasai says. “The health workers have no idea about mental disability. They cannot identify it.”
Hari Singh Bista, a senior health worker at the Budhakhani Health Post, says the government should provide him and other staff with training on mental health services, adding that he hasn’t heard about any such program. With training, he says, health post workers would be able to correctly refer patients to hospitals.
Some families have been able get treatment for their disabled relatives despite the lack of rural services.
Ganesh Man Lama’s 24-year-old daughter, Indra Maya Yewa, has a condition that caused her to wander off. Her father, a one-time health post manager, took her to a village shaman for four years, but there was no improvement. In April 2016, Man Lama took her to Mental Hospital Lagankhel for treatment, after he saw another person with similar behavior get effective treatment there. (Ganesh Man Lama and his daughter are not related to Chandra Dhoj Lama or his family.)
Now, Yewa goes to the city every four months for a checkup.
“She is better than before,” Man Lama says.
But the family stopped her medication, he says, because it made her lethargic. She’ll take it again, he says, as needed.
“Now she doesn’t wander off,” he says. “She would move her hands and shout. She has stopped that.”
Unlike Man Lama, Dhoj Lama’s family didn’t know of treatment options available to them outside their village.
Had they been born elsewhere, Dhoj Lama and others like him might have received medicine, therapy or specialized education from an early age. But in rural Nepal, families that live a hand-to-mouth existence find their own solutions.
Dhoj Lama’s mother fed him until he was 5 years old, his father, Bahadur Lama, says. He was 7 years old when he took his first steps. He has never said a clear word.
The family knows tragedy. Dhoj Lama’s mother was killed by lightning when he was young. Bahadur Lama married his wife’s sister, Anita Tamang, who cares for Dhoj Lama, bathing him and feeding him and ensuring that he pulls elastic shorts or pants on each day.
“He does not know how to use the zipper,” she says.
He refuses to wear shoes. Sometimes, when he gets angry, he become violent. He has never been to school. He has never socialized with other people.
Without knowing treatment existed for someone like Dhoj Lama, Bahadur Lama says he did the only thing he could think of: chain Dhoj Lama’s feet together, to keep him close to home.
“I know we should not keep him this way,” Bahadur Lama says. “Many people may think we are committing a sin.”
Shilu Manandhar, GPJ, and Yam Kumari Kandel, GPJ, translated some interviews from Nepali.