# India-Mental illness, choice and rights


October 20, 2012

Harsh Mander, The Hindu

  • Until recently, the law treated persons with mental illness not as persons who deserve treatment and care, but as people who are vaguely dangerous. File Photo: S. James
    Until recently, the law treated persons with mental illness not as persons who deserve treatment and care, but as people who are vaguely dangerous. File Photo: S. James
  • Members of Disabled Rights Group (DRG) and National Alliance on Access to Justice for People Living with Mental Illeness (NAAJMI) staging a protest outside Health Ministry against the Mental Health Care Bill. File Photo: V. Sudershan
    The Hindu Members of Disabled Rights Group (DRG) and National Alliance on Access to Justice for People Living with Mental Illeness (NAAJMI) staging a protest outside Health Ministry against the Mental Health Care Bill. File Photo: V. Sudershan

The new Bill should pitch for free care to mental health patients in public hospitals.

Persons with mental illness have long been subjected to cruelty, neglect, ridicule and stigma. In the last half-century, medical science has made significant strides in finding some cures and palliatives for afflictions of the mind – of emotion, mood, thinking and behaviour. Parallel to this is the evolution in our ethical frameworks: of human rights, and acknowledgment of the equal dignity of all human beings. But changes in the law, social attitudes, and the work of healthcare institutions and psychiatric professionals, have not kept pace with these scientific and normative advances.

The Mental Health Care Bill, 2012, recently released by the government, is an exceptional State-led attempt to correct many of the historical wrongs to which persons with mental illness have long been subject. The draft emerged after a long and engaged process of consultation with persons with mental illness, their care-givers, their organisations, and professionals.

The Bill met immediately with fierce opposition from some radical disability and mental health organisations. Many of their concerns and fears are legitimate. But I believe that this is on balance a humane and progressive Bill, bravely and compassionately navigating difficult ethical and professional terrains.

Until quite recently, it was routine to lock away people with mental illness in jails or jail-like mental hospitals, kept naked or in prison-like uniforms, bound in chains, abandoned and often forgotten for lifetimes. The number of beds in mental hospitals were, however, minuscule, and the large majority of patients were denied any kind of care, except those offered by faith healers and untrained practitioners.

The new Bill contains many protections to persons with mental illness. It bars prolonged hospitalisation, chaining, compulsory tonsuring, forced sterilisation, and electro-convulsive therapy without anaesthesia, and defends rights of patients to privacy, personal clothes and protection from abuse. It also prescribes that all persons with mental illness have the right to dignity, and to live in, be part of, and not segregated from society.

The Bill also mandates that mental health services shall be integrated into general health services at all levels – primary, secondary and tertiary, and that these services shall be available in the neighbourhood. If enforced, this will draw a curtain on the long tragic history of injustices and abuses which characterised large, segregated mental hospitals.

The opening sections of the Bill are forthright in admitting that persons with mental illness suffer discrimination, and that the current law has failed to protect their rights and promote their access to health care. It goes on to assure all persons the right to ‘affordable’ good quality public health care.

I believe this guarantee does not go far enough. In these columns last fortnight, I recounted the story of Rajesh, a young man suffering from hallucinations from full-blown psychosis, badly injured, who was repeatedly refused admission by many major public hospitals in the capital. The story underlines the general experience of growing abdication by professionals and public institutions to take care of impoverished and difficult patients. I believe that the Bill must guarantee nothing less than free care in all public hospitals for all patients who seek or need care, and prescribe deterrent punishments for hospitals and professionals who refuse to provide care.

Against their will

Despite its many progressive and humane features, the Bill is still attacked by some radical associations of persons with mental illness, mainly because it retains provisions in rare cases to admit patients for care, even against their will. This debate has an important history.

Until as recently as 1987, the colonial Indian Lunacy Act, 1912, prevailed, in which persons with mental illness (described as ‘lunatics’ and ‘idiots’), were admitted into mental hospitals through the order of Magistrates. The law treated persons with mental illness not as persons who deserve treatment and care, like any other person who falls ill, but as people who are vaguely dangerous, and therefore it in effect primarily aimed to protect other people from persons with mental illness.

The Mental Health Act of 1987 partially corrected this, by allowing for voluntary admissions, but Magistrates still retained a central role for patients who were admitted to mental hospitals against their will. Mental health activists rightly campaigned against this provision, as it was undignified and stigmatising; and it was on occasion misused to abandon and ‘tame’ assertive and non-conforming women and men.

Radical mental health activists are dismayed because the new Bill still allows involuntary admissions of patients against their will. They are uncompromising that the will of the patient should be absolute regarding whether or not she wishes to accept treatment and care.

On the other hand, many persons with mental illness, and their care-givers, recognise that there are occasions when it is in the paramount interest of some patients to be given care forcefully, even when they refuse it, if the person is in imminent danger of causing harm to herself or to other people. The Bill limits involuntary admissions to only such cases, with many checks and balances. Forced admission is only for 30 days at a time. The Magistrate is removed from the picture completely, and is replaced by mandatory reviews of all such cases by mental health panels, which comprise judges but also administrators and persons with mental illness and their care-givers.

There are moments I have observed – among loved ones, friends and the young people from the streets who are now in our care – when a person is suicidal or hallucinatory, abandons home or is suspicious of loved ones, is compulsively manic, spending or gambling life savings, violent and dangerous to himself or to neighbours. In the name of human rights, no hospital or professional offers them care. But there are deeper human rights in these moments, which cumulatively may temporarily override the right of free choice. These are the rights to empathy, protection, dignity and care. I believe that the Bill is right in the delicate balance it has found, retaining the provisions for involuntary admissions, but limiting these severely with many cautions and checks.

These debates are important, and we need to listen to each other more. But while we discuss, we must welcome a draft law which promises to reverse the cruelty, ignorance and abdication, which still characterises ways the State and professionals still treat people battling demons in their minds and souls, while guaranteeing them empathy, respect, protection and care.

 

Damned lives and statistics


COVER STORY
Damned lives and 
statistics
By Gunjan Sharma, The Week
Story Dated: Monday, May 21, 2012 15:51 hrs IST

The horrid state of mental health care in India 
can drive one insane. Does anyone care?


Anybody out there? A patient at Mental Hospital, Varanasi. Photo by Gunjan Sharma

It is a hot, humid afternoon at Lumbini Park Mental Hospital in Kolkata. About 30 male patients in tattered clothes huddle in a dormitory. The stench from the lavatory  next to it is nauseating. On the next floor, two female patients lie sprawled on the narrow corridor outside a female dormitory.
Things are no different at another state-run hospital in the city, Pavlov Mental Hospital, where about 400 patients share 250 beds. Patients at a severe stage of mental illness are locked up in 4x5ft cells, with an Indian-style closet—they eat sitting next to it. And to kill body lice, says a hospital employee, patients are stripped and sprayed with insecticides meant to kill cockroaches.
The pathetic and horrible condition is compounded by inhumanity: “The funds that come to the hospital for food, clothing and mattresses are siphoned off by the officials. They even take home the bedspreads and curtains,” alleges an employee.
The hospital looks nice from the outside, but it has no rehabilitation facilities to engage patients in vocational training. As a result, even patients who become stable lose their cognitive abilities and succumb to negative symptoms such as withdrawal, lack of concentration, reduced productivity and, eventually, lack of will to live.
“A lot of cosmetic measures have been taken in the past two years to improve the overall look of the compound,” says an official, “but the patients still live in inhuman conditions.”
Mental Hospital, Varanasi, was conceived as a jail in 1809 for criminals with mental illness. Today, only 54 of 290 patients are prisoners, yet the same old colonial rules are followed.
Patients live in stinking barracks. The cells have no fans, even as the temperature soars over 40 degrees Celsius. Patients are forced to sleep on the dirty floor, as there are no beds in most wards. And thanks to the strict adherence to the old ‘jail manual’, patients spend over 17 hours a day in the lockup, without any recreational facilities.
The ‘jail’ authorities thrash the patients if they demand basic facilities, says a patient in the male ward. “We don’t even get sufficient food,” he says.
The hospital has about 300 in-patients and handles as many out-patients a day, but has just two psychiatrists. No nurse, no clinical psychologist, no occupational therapist, no social worker.
“For the 24 years that I have been here, nothing has been done to improve the living conditions of the patients,” says a senior doctor at the hospital.
Be it West Bengal, Madhya Pradesh, Uttar Pradesh or Maharashtra, most state-run mental hospitals are in a deplorable state. According to the National Human Rights Commission, there are only 43 government mental hospitals in India, of which hardly half a dozen are in a “livable” condition.
“The NHRC was asked to report on the condition of mental hospitals in the 90s. We brought out our first report in 1999; the condition of most mental hospitals was shocking. Even after a decade, it remains the same,” says P.C. Sharma, member, NHRC. “It shows the government’s attitude towards the mental health care in the country.”
In fact, the NHRC’s reports in 1999 and 2011 look almost identical. Most hospitals lacked, and still lack, even clean water and ventilation. Many hospital buildings are in a dilapidated state, as they were colonial structures, mostly jails.
Take the case of Bangur Institute of Psychiatry, Kolkata. Patients here still live in the same dark, damp, dirty jail cells. Forget rehab activities for the patients. “If a bulb blows, it takes five days to get it replaced,” says a voluntary psychologist at the hospital.
Posing as the daughter of a patient, I ask this social worker whether I should admit him in the hospital. “It is nothing more than a jail,” he says. “It will only deteriorate your father’s condition; it is not for people like you.”
In its 2011 report on the Institute of Psychiatry, Kolkata, NHRC’s then special rapporteur Dr Lakshimidhar Mishra writes: “Around 12 noon I inspected the dining hall of the Institute of Psychiatry. About 10 in-patients were taking lunch which comprised about 100g of rice, 50g of dal (mostly watery), a potato and mixed vegetable curry and a small piece of fish. There was no salad and no other fried vegetable, spinach or fruit.”  The nutritive value of the aforesaid meal is 1,500 cal; a normal human being needs at least 2,500 cal.
Mental Hospital, Indore, hardly looks like a hospital from the outside. The male ward, with a dozen patients, is dusty. The window panes are broken. Lavatories, as expected, are stinking, and many of them in the female wards do not have doors.
In the book Mental Health Care and Human Rights released in 2008, the NHRC notes, “Mental Hospital, Indore, is in a highly deplorable state in almost all aspects of human care. Evidence of chaining patients, clinical abuse and active neglect are seen.” Things are almost the same even today. Quite understandably, hospital superintendent Dr Ramgulam Razdan bars me from talking to patients and staff.
“The new building is under construction and we will shift all the patients in three to four months,” he says. “This building had a thatched roof when I took take charge in 1998. Lack of political will delays reforms.”


Can we afford the delay?
At least 10 crore people suffer from mental illness in India. About one crore need hospitalisation. There are just 43 government mental hospitals, most of them in a pitiable condition. There are only 4,000 psychiatrists in the country; 70 per cent of them practise in private hospitals in urban areas.
There is a severe shortage of paramedics, too. In 2008, according to an NHRC report, a single psychiatrist was found manning the 331-bed hospital in Varanasi. There were no sanctioned posts of general medicine officer, clinical psychologist, psychiatry social worker, occupational therapist, dietician and nurses. Four years down the line, all that the hospital has got is an additional psychiatrist.
Furthermore, over 30 per cent posts of psychiatric nurses are lying vacant in most mental hospitals across the country. Besides, there is a severe shortage of grade D staff, who are responsible for the day-to-day care of the hospitals and patients. And at most of these hospitals, electroconvulsive therapy is still given without anaesthesia, as there are no anaesthetists available.
“The problem,” Mishra says, “is in the attitude of authorities managing these hospitals. Most of the hospitals in India are not managed by psychiatrists. So they don’t understand the complexities of mental health care.”
For instance, Mental Hospital, Varanasi, is managed by Dr K.K. Singh, an ENT surgeon. There are physicians and even gynaecologists who are in charge of mental hospitals. “These doctors don’t understand the intricacies of a psychiatric illnesses and the comprehensive care the patients require,” says a psychiatrist working in a state-run mental hospital in UP.

Calculation gone wrong
In 2010-11, the Central budget allocation for the mental health programme was just Rs103 crore—less than 1 per cent of the total health expenditure. According to the World Health Organisation, about 10 per cent of any country’s population suffers from some form of psychiatric disorder at any given time. And one in every four persons suffers from some mental disorder at some point of time in life.
Even if we consider that a conservative 7 per cent of India’s population suffers from some mental disorder at a given time, it amounts to about 8 crore people. “That means we have a budget of Rs13 per mentally-ill patient per year, when at least Rs500 per patient per month is required to provide at least basic medicines, food and shelter,” says Tapas Ray, founder of Sevac, a Kolkata-based NGO.
A senior officer, who has worked in the Mental Health Cell of the Union ministry of health and family welfare, says mental health has never been a priority of the government. The District Mental Health Programme, introduced in 1982, remained on paper till 1996, when the government finally launched it in 27 districts across the country with a budget of Rs27 crore. Today, the programme has managed to cover just 123 districts, with 40 per cent posts lying vacant.
The problem is not shortage of funds, says a senior ministry official; there are times when the states return the money, as they couldn’t utilise it, he adds. “There should be a close monitoring of mental hospitals. But unfortunately, there is no manpower to do even that. We do have the Central Mental Health Authority, but its members have not met for the past three years. There is similar official apathy at the state level, too.”
The Comptroller and Auditor-General slammed the previous V.S. Achuthanandan government in Kerala for not utilising Rs4.07 crore of the alloted Rs9.98 crore. That, in a state where prevalence of mental disorders is almost three times the national average.

 

Caught between fate 
and faith


With the medical system in a mess and awareness about mental disorders lacking, faith healers and quacks are making hay. According to a study by Dr Shiv Gautam, former superintendent of Mental Hospital, Jaipur, 68 per cent of mentally ill people are taken to faith healers before a psychiatrist.
“The reason, besides superstition, is that most general medicine doctors fail to diagnose psychiatric illness,” says Gautam. Apparently, psychiatry is not a separate subject in the MBBS curriculum, and there are just 11-12 lectures on the stream.
“Moreover, there are hardly 250 postgraduation seats in psychiatry, and most of the pass-outs opt for jobs abroad,” says Dr Sunil Mittal, director, Cosmos Institute of Mental Health and Behavioural Sciences, Delhi. “In fact, there are more Indian psychiatrists in the US than in India.”
Many patients initially consult a general physician during the onset of a mental disorder, and if that doctor fails to diagnose the problem correctly, generally the next option is faith healing, which, professionals say, is hogwash. “A mentally ill patient displays symptoms which superstitious people believe are paranormal,” says Gautam. “Such patients are tortured, chained and used for extracting money from their families.”
Take the case of Hema. Until a few months ago, the postgraduate in English used to call herself Mrs Sonu Nigam, assuming to be the Bollywood singer’s wife. A clear case of schizophrenia. But, her family took her to Datar Sharif dargah near Ahmedabad. They believed an evil spirit was at play. She spent a year there, chained, pained. And it was only when her condition deteriorated to an extent that incontinence set in, her family brought her to Gautam. “In 15 days, Hema started improving and, now a month later, she is normal,” he says.
Businessman Sanjay of New Delhi, however, is still awaiting emancipation. Four years ago, he was diagnosed with mild mania. He was put on medication and his condition improved. But as soon as Sanjay stopped medication, the symptoms returned. Then, his father took him to Narhar Sharif dargah in Jhunjhunu district, Rajasthan.
“For three months, I have been chained here. I want to go back home and meet my doctor, but my father is not allowing me,” he says. “My father has been convinced by people here that I can go only when I get orders from the dargah.” Taking me to be a patient’s relative, Sanjay offers heart-felt advice: “Never bring anyone, under whatever circumstance, to the dargah.”
In the case of disorders like hysteria, a patient has a tendency to do whatever is suggested. Faith healers take advantage of it. Their sidekicks keep performing certain actions in front of the patient, who is likely to imitate the actions. The faith healers call this paishi or arzi, a process in which God talks to patients and heals them.
Some others, especially schizophrenics, are treated cruelly. Some are whipped or caned, some are made to inhale smoke from burnt chilli, some have chilli paste smeared into their eyes and some get branded with red hot coins. “I recently got a patient whose burn was just 2mm away from his windpipe,” says Gautam.
Despite laws banning the practice, many dargahs and temples keep patients chained. Some, for a lifetime. In 2001, a fire at a dargah in a coastal village, Erawadi, in Ramanathapuram district of Tamil Nadu charred to death 26 mental patients, who could not escape the blaze as they were chained.
Soon after the incident, the Supreme Court directed the Centre to conduct an all-India survey to identify registered and unregistered asylums. The court also ordered that each state government should establish at least one mental health hospital. But even today, states like Haryana still do not have a government mental hospital.

The unwanted


Thanks to official sloth and societal apathy, families of mentally ill people are increasingly opting for the easy way out: ‘dumping’.
A recent shocker came from Thrissur district in Kerala, where an illegal ‘asylum’ was busted. Thirty-five men and six boys from across India were rescued from inhuman conditions. Apparently, it was the stench from their unwashed bodies and excreta that made neighbours alert the health department.
As officials raided the asylum, they found naked and chained inmates, who had been dumped there by their families after paying the asylum owner. Some were found crawling in their excreta, some even consuming it. Their bodies bore marks of torture, and some had surgical scars on their backs, prompting allegations that the asylum had links with kidney thieves. Of 78 patients entered in the register, only 41 were found during the raid.
An even more shocking trend is of patients getting dumped in jungles, especially in the forest reserves of south India. Families, mostly from the north, pay lorry drivers to ‘drop’ these hapless victims, including children and women, in the forest ranges. Social activists in reserves such as Wayanad and Bandipur say drivers rape the female victims before dumping them at the mercy of nature.
“Before we term the families as ‘cruel’, we must look at what forces them to take such extreme steps,” says social activist Murugan S., who has lost count of the number of mentally ill people he has rescued from streets, railway stations and bus-stands across Kerala. And, finally, he concludes with what has become clichéd in Indian society: “The system needs a holistic change.”
with S. Neeraj Krishna

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