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Why do patients who have been treated for mental illnesses continue to remain at institutions in India?  Premium

Why do patients who have been treated for mental illnesses continue to remain at institutions in India? 
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Experts point to a host of factors including less-than-optimal reintegration programmes; pressures on families and the lack of financial outlays to meet the scale of the problem 

On a rainy September morning in Karjat, on the outskirts of Mumbai, 25 patients from the Regional Mental Hospital (RMH), Yerwada, arrived at the Shraddha Rehabilitation Centre, run by an NGO, to be reunited with their families. Many of these patients had been residents of RMH for over five years; some living there for years, even after being treated and cured.

Among the patients was Lukhi, a woman in her 40s, standing in a queue, fiddling with her bangles and waiting to speak to her psychiatrist. All she asked him when her turn came was: “Ghar chod do ge na?” You will let me go home, right? Lukhi was brought to the RMH in 2016 and lived there for eight years even though she was fit to be discharged within a year. It was only on September 10 this year, after the NGO collaborated with the RMH for rehabilitation that the process of reuniting her with her family began. Lukhi’s is not an isolated case. Hundreds of patients have been residents of government-run mental health institutions for years, even after having completed their treatment, in facilities in Maharashtra and across India, experts and activists say.

Last year, the National Human Rights Commission stated that over 2,000 patients who were fit to be discharged continued to remain at 47 government mental healthcare institutions in the country. Of these, over 900 were in four facilities in West Bengal. The NHRC 2023 report states: “none of the institutes have taken effective and long-term measures to ensure that a mentally ill person can exercise his right to community living unfettered.” A study by The Hans Foundation, a public charitable trust, in 2019 found that the median duration of stay of a mentally ill person at an institute was six years. The study, ‘National Strategy for Inclusive and Community Based Living for Persons with Mental Health Issues’ that covered 44 mental health institutes in the country, found that 48.8% of patients had lived in these facilities for one to five years while 11.4% had lived there for over 25 years.

The petition at Bombay High Court

In 2022, Mumbai-based psychiatrist Harish Shetty filed a petition in the Bombay High Court, taking up the matter of a woman who had been a resident of the Regional Mental Hospital, Thane, for 12 years. His plea said that this was a violation of the provisions of the Mental Healthcare Act, 2017 and also violated the right of the individual.

During the hearings, the Bombay High Court noted that 1,022 patients across four hospitals in Maharashtra were awaiting discharge despite being declared fit. A similar concern was raised by the Court in October 2023, over 379 patients who had been residents at the hospital for over 10 years. In March this year, the court pulled up the State Mental Health Authority (SMHA) for its ‘chronic failure’ in enforcing the Mental Healthcare Act. It asked the Mental Health Review Board (MHRB) to review these cases.

Speaking to The Hindu, Dr. Shetty said, “A myth that people believe is that once one is admitted to a mental health institution, one will stay at the hospital for life. I wanted to break this myth.” Dr. Shetty also pointed to the need for facilities to engage with families right from the time of admission, and see to it that patients are reunited as soon as their treatment is completed. “This has to be the top priority of all institutions. Mental hospitals are not dumping grounds for the mentally ill,” he said.

While some avail of treatment and then rejoin their family/re-enter society, some continue to remain at the institutions, sometimes for years or even decades
| Photo Credit:
Snehal Mutha

What the Mental Healthcare Act says

Most patients of mental healthcare institutions are brought by their families who do not have access to mental healthcare services in their hometowns or are unable to care for their loved ones, or are brought in by the local police if they are found to be wandering and mentally ill. Lukhi falls into the second category. 

While some avail of treatment and then rejoin their family/re-enter society, some continue to remain at the institutions, sometimes for years or even decades. Under the Mental Healthcare Act of 2017 a person cannot be admitted to a hospital/mental health institute for more than 90 days. This admission can be extended, or the patient can be readmitted for up to 90 days in cases of patients who still require care, but the State’s Mental Health Review Board (MHRB) has to review these cases. The law however, is often not implemented on the ground, say experts.

Mumbai-based psychiatrist Swarali Kondwilkar said that often institutions do contact families of patients when they have their details, but in the case of patients from other cities/States, this may be neglected. “The institution does not have the will to go the extra mile and find the family, whereas families with scarce financial resources are unable to travel and find their relatives/bring them back home. In some of these cases, it is assumed that the patient is abandoned.” 

When language is an obstacle

Language is also a barrier in several cases. Ask Tulsa anything and her reply is ‘nanu’, which, her social worker says, means ‘don’t know’. Tulsa, who is in her sixties, has been a resident of RMH, Yerwada, since 1990. Officials believe she belongs to a tribal community in Gujarat. Tulsa does not understand Hindi, which created a communication gap and is one reason she has spent 35 years of her life in an institution, far from her family. Ramon Magsaysay awardee and psychologist Bharat Vatwani said many institutions have patients from across the country, and so, language is key to helping trace family backgrounds. If hiring multilingual mental health staff is not viable, she said, then efforts should be made to create a centralised system where mental health facilities across the country were linked to each other, so patients could at least be transferred to their home State to facilitate easier reunification with families.

In some cases, the patient remains because they have nowhere to go. Bina’s story is one such case. The 40-year-old was admitted to Ratnagiri Hospital in 1998, but only brought to a rehabilitation centre in December 2023. An NGO learned that Bina’s in-laws and her spouse had abused her, which exacerbated her illness. Bina’s family refused to take her back, and since then, she has been living with the NGO and working as a member of their support staff. Bina still asks, “Mujhe ghar chodoge na?” You will take me home right?

Lukhi was reunited within five days of her discharge from the mental health facility. On September 15, she saw her children — two sons and a daughter — after eight years. Lukhi does not remember how she landed in Pune from her hometown, Kalipehari village in Paschim Burdwan district, West Bengal. She only remembers the police taking her to a mental health facility. Confirming her story, her brother Shrikant Soren, 28, said, “She just left one day from her in-laws’ home. We kept looking for her, but she was nowhere to be found.” 

In 2020, Shrikant learned that Lukhi was in Pune, but could not bring her back home due to the Covid-19 lockdown. “No further communication could happen with the hospital. We lost all hope, but when we saw her, it was a miraculous moment,” he said, overcome with tears. 

“Many women with mental illnesses are from poor backgrounds and may not be literate. Usually, their village is the only place they know – they may not even know their exact addresses. Some have suffered domestic violence at the hands of their husband or in-laws or left because of postpartum depression. These experiences can exacerbate an already existing mental illness and if left untreated, their condition worsens,” said Dr. Kondwilkar. 

Of patients who have been treated and cured, women are disproportionately among those who have nowhere to go to, and, experts say
| Photo Credit:
Snehal Mutha

Families under pressure

Experts say that many families are also simply not able to afford the time and costs involved in caregiving. Reduction in family sizes, as is common nowadays, adds to this pressure. 

Families are often overwhelmed by the process of seeking treatment and caregiving, and acceptance of a diagnosis of a mental illness does not come easily to many, said Padmavati Ramachandran, director, Schizophrenia Research Foundation, Chennai. “Stigma continues to persist against persons with mental illnesses. Families may be afraid to allow their relative to mingle with others due to fears of their being called names or perhaps worries over their possibly unpredictable behaviour. When this continues, the caregiver also starts withdrawing from social activities – the whole family is then affected, and may feel that leaving the patient at an institute is their only choice.”

There is also, pointed out out Lakshmi Narasimhan, director, The Banyan, a Chennai-based NGO working in the mental healthcare space, a large deficit between treatment that is to be provided and the financial outlays that exist. The scale of the problem is large but investment in it is low, and there is no leadership to initiate programmes that can help people with psycho-social diseases reintegrate into the community – which is possible if they are provided with the required support. All these factors, she says, also contribute to the institutionalisation of patients – a phenomenon that has been ongoing since colonial times. 

Of patients who have been treated and cured, women are disproportionately among those who have nowhere to go to, and, experts say, this is a problem that is starker in urban areas compared to rural communities. Lack of space, smaller households and higher costs of living in urban cities could all be factors that contribute to this.Kavita for instance, was a patient at RMH but was discharged two years ago; however, her brother, who lives in Mumbai, is unable to care for her and has said he cannot take her to his home. Since then, she has been working at the Shraddha Rehabilitation Centre and is currently pursuing a degree in law. 

Following Dr. Shetty’s PIL, the discharge of patients has taken off from the four mental health facilities in Maharashtra — in Thane, Pune, Ratnagiri, and Nagpur. These facilities have a total capacity of 5,500 beds and house around 2,800 patients. Thane Mental Hospital deputy superintendent Prachi Chivate said, “From January to August this year, 218 patients were discharged, whereas in 2023, only 70 were discharged.”

At present, said Swapnil Lele, director of the State Mental Health Authority, around 500 fit-to-go patients are still living in mental health facilities across Maharashtra. “We are taking different initiatives to rehabilitate them, but we face our own set of challenges, including families not wanting to take their relatives back, and patients who can’t remember their addresses,” he said. This is exacerbated by systemic challenges: “Despite the Court’s order, which has been significant in forming the MHRB in Maharashtra, a lot of things are still hanging halfway. Substantial progress has been made in de-institutionalising patients, but the process becomes time-consuming when officials do not cooperate. Discharging patients and reuniting them with family is possible, but it involves a lot of convincing of the administration, which makes it tedious,” said a member of the Thane Mental Health Review Board.

To counter some of these challenges, the SMHA has begun initiatives such as the ‘escort drive’ campaign, which involves institution staff dropping patients home. They have also collaborated with a dozen NGOs for rehabilitation and reunification efforts, Dr. Lele said. The SMHA has also set up a ‘Gumshuda’ portal integrated with AI, that helps match addresses from ‘missing people’ complaints to the patient’s addresses, so that they can be reunited.

The way forward, after discharge

What happens after a patient is discharged? In Maharashtra and across the country, Many States have set up halfway homes, transitory residential centres, for patients who are discharged and who have nowhere to go to, and still require some amount of daily support.  

Maharashtra has six halfway homes run in association with NGOs. Three of these were added in August this year. But not all of them are free: some are paid facilities that have costs ranging from Rs. 30,000 to 75,000 per month. 

Some other States run homes that are completely funded by the government: the Institute of Mental Health (IMH) in Chennai has five halfway homes with a total capacity for 250 patients funded by the Tamil Nadu government. Among the initiatives begun to help make patients financially independent, is a bakery. “These initiatives help patients heal and keep them close to the community,” said Poornachandrika P., former director of IMH, Chennai. She emphasised though that more needs to be done to adequately meet the needs of those with mental illnesses. 

Halfway homes, however, are only effective if an adequate community system is built around them, says Dr. Lakshmi of The Banyan, otherwise they risk becoming just like any other confined unit of a mental healthcare facility. “We don’t really pursue halfway homes; it puts a distance between the patient and the community. We have hostel-like facilities, where the person can have an individual apartment or shared units. These are for low-income background patients, as they are State-financed through welfare schemes and philanthropist activities,” she said. The Banyan’s other initiative is ‘Home Again’ where 4 or 5 patients live together, with the support of staff, in the community, and mingle with local society,” she said.

Reducing stigma through, is crucial, said Dr. Poornachandrika. Acceptance of those with mental illnesses and their right to live in the community is lacking in society, she said, pointing out that even with employment, this poses a challenge. 

At the root level though, the country’s District Mental Health Programme, aimed at providing mental health care services and support at the district level, needs effective implementation. Maharashtra implements the DMHP in 34 of its 26 districts. A lot of the funds allocated to DMHP are left unutilised, experts point out. “A lot of problems could be solved at the DMHP-level if it is adequately implemented. There is a need to deploy cadres well-versed in mental health issues and treatment, who can reach out to communities and help in early detection and connect them to hospitals,” said Dr. Lakshmi.

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