Dr Nirmala Srinivasan, a disability rights advocate and Ashoka fellow, is the founder of FACEMI (Families Alliance on Mental Illness), the first national forum in India for families that are engaged in taking care of treatment, rehabilitation and support of their members suffering from mental illness such as Schizophrenia, Bipolar Disorder (Severe Mental Disorder, SMD) or Common Mental Disorders (CMD) such as Anxiety, Depression, Obsessive-Compulsive Disorder (OCD).
Dr Srinivasan also co-founded Action for Mental Illness (ACMI) in 2003, an advocacy initiative which has been successful in positively impacting the law and policy scene pertaining to mental healthcare in the country and has worked out a number of innovative projects for the improvement of the mentally ill. Set up as an integral part of ACMI, FACEMI is a lobby to strengthen the role of the families to access quality care for all the people under psychiatric treatment or in the need of one. She is also founder president of AMEND (Association for Mentally Disabled), a self-help group for the families of the mentally ill, Bangalore.
In an exclusive interview with India Medical Times, Dr Nirmala Srinivasan talks about her work and experience in the field of mental health advocacy; discusses what ails mental healthcare in India, especially at the policy level; and lays out the way that lies ahead.
Please tell us something about your organisation and what nudged you towards taking up this unique enterprise.
We started out in 1992 as a small self help group for psychiatric patients and their families, where family members were active in taking care of their patients. Being the founder and coordinator, I learnt along the course that there wasn’t any significant support for family members of psychiatric patients, unlike those with other disabilities. The lack of support and awareness of human rights of the mentally ill was so glaring that it made me realise that a certain level of dialogue needs to be achieved with family members, the prime caregivers of the patient. I noted a significant amount of apathy among family members as well. The view of the mentally ill patients, as human beings with their own dreams and aspirations in life, was absent. The Persons with Disabilities Act was passed in 1995 and MI (mental illness) was included as a disability with rights of its own other than medical.
I set up Action for Mental Illness (ACMI) in 2003 together with Ms Laila Ollapally, an advocate at Karnataka High Court, when I was awarded the Ashoka fellowship. The prime objective was to engage with government officials, especially health and disability policy makers and law makers, mainly to bring to their attention what such families and patients go through in their daily life; the utter lack of system level support for these families; and the absence of family oriented mental health services even under the DMHP (District Mental Health Programme) etc and awareness on their rights.
We learn that yours is an advocacy initiative directed at upholding the rights and needs of the mentally ill. How does this set you apart from conventional ones and what positives do you see associated with this kind of initiative?
If we categorize psychiatric problems as illnesses, we have to acknowledge that mental illnesses have their own share of emergencies, just like, say, for cardiac illnesses. At such desperate times, one relies on emergency ambulatory services to mobilise the patient to the appropriate health facility. With advocacy by ACMI, we first had public sector ambulances (108) running for and attending psychiatric emergencies. Initially, Bangalore was the first city to have a dedicated psychiatric ambulance, which has now been merged with 108. 108 drivers are now trained in picking up psychiatric patients in emergency settings. From June 2016 to December 2016, the 108 ambulance service shifted nearly 1800 patients. Such is the power of advocacy. Now that we have 108 for psychiatric emergencies in Bangalore, the Health Secretary has made it mandatory all over Karnataka. Such a power to bring about systemic changes is quite limited with service delivery kind of initiatives. Advocacy requires a great deal of policy research and perseverance, and I call it a ‘battle without battle lines’.
You can imagine the domestic upheaval caused by psychiatric emergencies. Doctors are reluctant to do home visits for fear of medico-legal issues. The Mental Health Act 1987 makes a provision for the police to come in and break open the door, but families dread calling the police. When the system does not provide crisis support to patients, how can anyone blame the family for its apathy and negativity? I believe Indian families are as competent as families elsewhere in the world when it comes to survival skills. Various methods are tried even if it is violation of human rights to get the person to seek psychiatric help. This is the tragedy that causes 90% treatment gap because of lack of emergency and routine support mechanisms.
The WHO (World Health Organisation) describes the human rights violations of the mentally ill as a worldwide humanitarian emergency. How severe do you estimate the problem to be in India, based on your personal experience in the field of mental health advocacy?
I will attend this question at two levels: firstly, based on the published data of NHRC (National Human Rights Commission), the official mouthpiece of human rights in India, keeping Article 21 of the Indian Constitution as the benchmark; and secondly, on the basis of my own, albeit limited, personal exposure.
The NHRC Report 2005; Justice Shivraj Patil Report on Mental Illness at Vijayawada, Andhra Pradesh, 2006; followed by Justice Mishra Committee Report, 2010 taking all these into accord, the NHRC states that closed wards and cells continue to be used, and there hasn’t been any conversion of closed wards into open wards. In such places, one cannot dismiss the violations of human rights, including sexual abuse of patients. Let me tell you that family members aren’t against closed wards for clinical reasons, provided their patients are kept in humane conditions, without rights violations and abuse, and if such a confinement is necessitated for the benefit of the patient. They don’t mind keeping them in closed wards but let the wards be hygienic, with somebody to protect the inmates at night from substance or sex abuse.
Another major aspect of the NHRC review relates to deaths and suicides in closed wards. In 2004, a patient in a closed ward in Andhra Pradesh committed suicide. However, the Report, quoting NHRC, reads, “the inquiry was held, post-mortem was conducted, but the report was not available in the file”. You can see here the amount of callousness and insensitivity towards human life. And the right to life is defined by Article 21 of our Constitution. The NHRC came out pleading helplessness and no action has been taken till date to the best of my knowledge. Even now in Andhra Pradesh, patients are kept in cells and closed wards, I believe.
In 2008, another review of hospitals across the country was undertaken by NIMHANS (National Institute of Mental Health And Neurosciences) by mailing questionnaires to the heads of respective institutions (jointly undertaken with NHRC). In spite of the reviews and recommendations cited by NHRC, the pro-forma did not talk about closed wards, but instead, it referred to human and hospital infrastructure, human resources, budgetary allocation, quality of food etc. Another major aspect is that the NHRC and NIMHANS teams for surveys included only NHRC directors and NIMHANS doctors, without anybody from the civil society or other stakeholders.
Sometime back, a patient named Vishwanath, in a NIMHANS closed ward, was shot down by commandos for fear of attacking others. Although the media reports suggest that the commandos were called in and prior permission was obtained from the mother, there has been no inquiry from the NHRC. I personally cried at this incident because I felt helpless. I wrote to the NHRC but got no reply in return.
My observation as a field worker has been that many mentally ill patients need to be kept tied up at their homes while their caregivers go for work. Now, when the same thing happens for pets, we have animal activists raise cudgels. But no such lobby exists for the mentally ill. Can we blame the family of human rights violations when the support for facilities is missing? How can the sole breadwinner cum caregiver go to work and at the same time ensure the safety of her beloved family member?
Why was Vishwanath shot by commandos? Isn’t it incumbent on the NHRC to look after such things? My personal opinion is that the NHRC and the WHO need to change their paradigm of human rights and their violation – from the definition of human rights to the one of social justice.
What broad deficits do you identify in the existing law and policy framework for the mentally ill?
I am a believer in the family care models because it is the largest free service provider for Indians with mental illness and disorders. Hence only family-centric programmes will succeed in India and probably all over the world indeed. About 70-80% of the PMIs (people with mental illnesses) in India live in families. Not recognising the role and responsibility of the family is one of the biggest drawbacks, both in policy and in law. The UK Mental Health Act 2007 mentions the rights of NR or Near Relatives. I pleaded with the Ministry of Health to have something similar in the proposed Mental Health Care Bill 2014, but could not make it. But I could manage it in my capacity as a member of the Policy Group (2011-14) set up by the MoHFW, GOI (Ministry of Health & Family Welfare, Government of India). The Mental Health Policy 2014 has emphasized caring for care givers. Hopefully, when the MHC Bill becomes the Law, we can draft Central and State rules that facilitates quality care by families.
The second major drawback is the stand-alone psychiatric approach. Despite being classified under non-communicable diseases (also budgetary allocation under non-communicable diseases), the speciality lacks adequate integration with others and public health. The policy states that we need to integrate mental health into general health, but no action has been seen at the ground level. Despite the high level of awareness about the social reality of mental illnesses in the policy, the state governments lack out of box thinkers to implement it. Textbook psychiatric practices of the 60s and 70s will not work in India any more.
From policy to legislations, we find an incredible gap. The existing law is Mental Health Act, 1987, successor to the Indian Lunacy Act, 1912. However, the redeeming fact is that the Rights of Persons with Disabilities Act 2016 has been passed, on December 28, 2016; and this law establishes equality between physical and mental disabilities such as Mental Illness (MI); it has granted free legal capacity to MI and liberated them from the age-long diktat of Plenary Guardianship. I do hope that our mental health fraternity and families will come forward to advocate for the rights of Patients with Mental Illness (PMI). The archaic medical mindset of most psychiatrists does not go with the pro-activism of the GOI.
Tell us something about FACEMI and the impact it has been able to generate thus far.
FACEMI is the first national forum set up for the MI sector to lobby as the voice of family power; it was started as one aspect of ACMI’s four pillar advocacy strategy: legal, political, media, and family. We have attained a lot in the first three spheres from court cases in the Supreme Court / Karnataka courts and political success such as income tax rebate for mental illness sector. However, these advocacy success stories of ACMI could not be translated into action at the family level. This is because we have been brainwashed into community care models at the cost of reality based family care.
We have an ambitious community care model on paper, laid down by the WHO, while in the Indian setting community care is a myth. There is no community for the mentally ill, other than the family. ACMI’s political and legal advocacy efforts led the government to adopt the family model as a third model at the policy and programme levels. I started FACEMI, the first national forum for the families of the mentally ill persons, mainly to restore the image of the Indian family as a tireless responsible 24×7 care giver. By family, we mean the ‘inclusive’ family, that is all the members of the family without them being labelled as caregivers or users. Family doesn’t mean only caregivers, the mentally ill patients themselves being an active caregiver at times. In a family, we live as parents, brothers and sisters, not caregivers and patients or users. These are definitions for research and budgetary purposes. A family is a bond of love and support. Even mentally ill at times do a lot of work at home, and should be classified as caregivers. So, when we use the word ‘Families Alliance’, we use it in an inclusive sense. Our approach is through advocacy, and currently our services are internet based.
What, according to you, are the most pressing issues in mental healthcare today in India?
I’ll discuss the issues at two broad levels: the level of the family, and the administrative/policy level.
Starting with the family, I feel the biggest issue is stigma, which I’ve known to be much more rampant in urban areas than in rural areas. Things like occupational mobility and status hierarchy hardly exist in rural areas; the only prominent form of status hierarchy in villages exists within the family, wherein its members are stratified as per their roles and seniority. Urban families are driven more by ambition and career mobility. You may say that a lot of occult beliefs and superstitions surround the perception of mental illnesses in villages, but being a trained social scientist, I can affirm that this paradoxically helps to retain the mentally ill within the community and convinces the family to seek treatment. Whether the mode of treatment they go for is a rational/scientific one or not is a different story. Whereas in an ambitious urban household, the odds of the patient being seen as an encumbrance and thus being left out are higher. Stigma is therefore a pressing issue today, and nothing short of a massive mass awareness campaign, like the ones we have for smoking hazards and cancer, would be able to handle it.
The other issue is at the administrative level. Mental health, as you may be aware of, falls under both the health ministry and the disability ministry, and families of the mentally ill have to negotiate with both to be able to secure their rights. This poses a huge problem. Given the stigma surrounding mental illnesses, many families don’t even want to come out into the open with their patients and this tiresome process of shuttling between ministries acts as a significant deterrent in the access of rights and services. This also comes in the way of a rights based approach that the government envisages. Taking a mentally ill patient for monthly psychiatric consultation is in itself a daunting task; you can imagine what patients and families have to go through when they go for disability assessment and certification. What we need is a single National Mental Health Trust to oversee the functions of both and provide user-friendly mechanisms such as Assisted Home Care (AHC) to offer consolidated doorstep delivery of MH programmes in keeping with the patients’ rights under the RPWD Act (Rights of Persons with Disabilities Act, 2016) and the proposed MHC Bill 2014.
It appears the National Mental Health Policy 2014 and its slogan of OPMI (Orphaned Persons with Mental Illness) and AHC (Assisted Home Care) as part of Caring for Caregivers is already in cold storage. Rapid urbanisation, decline of old family system and nuclearisation of Indian family, off-shore siblings of PMIs etc has witnessed frequent starvation deaths of mentally ill persons orphaned by the sudden/natural deaths of their caregivers. They are called Orphaned Persons with Mental Illness (OPMI). It has become rampant in urban India. This can be mitigated to some extent if there is AHC and a directory of caregivers is kept and updated regularly.
Working so closely with the ministries and policy makers, what more do you think can the government do to help support your endeavour and further your initiatives?
I would like the government to seriously consider setting up a National Mental Health Trust, for which I’ve been campaigning since 2004. It must have adequate representation of caregivers and recovered patients, and should be headed by a technocrat medic, someone with long years of experience in public health management only. I would also like the government to pass the Mental Healthcare Bill at the earliest.
How does the future lay out for your organisation and the mentally ill of this country, as far as their needs and rights are concerned?
The future looks bright with lobbies like FACEMI, the formal launch of which was sponsored by the MoSJE (Ministry of Social Justice and Empowerment, Government of India) in 2015. I wish to make it a national voice reflecting family power that resounds throughout the country. We can’t have this initiative to bear fruit unless the entire sector of MI, including the families, think that tomorrow is today, beyond just the medical management of mental illnesses. Look at the person and his or her dreams; make it happen in India.
by Dr Soham D Bhaduri