This article by Kavya Murthy was originally published on The News Minute as With a country-wide lockdown, how is India coping with people’s mental health needs?
In early April, Gangamma (name changed) was found wandering on the streets of Bengaluru, dishevelled, talking to herself with garbled speech, and was brought into an emergency room by the police. She was homeless, did not know where she was, and evidently mentally ill. She needed immediate treatment, but first, she had to be screened for COVID-19.
Gangamma lived on the streets uncared for and could not recall where she had been. She could have been to bus terminals and shelters, other crowded places, and come into contact with hundreds of people. She needed to be admitted for serious in-patient care in a hospital ward, but needed to be tested to protect other vulnerable women with mental illness.
But guidelines issued by the Ministry of Family Health and Welfare (MFHW) did not take her into account as a category for testing; the people to be tested had to have travelled internationally, or come into contact with confirmed cases, or work in health care. The doctors had to decide what to do in the moment, especially to protect dozens of others who would be affected if she was admitted for care. Finally, she tested negative for COVID-19, but sadly, she was found to have a tumour in an X-Ray. If she was to be treated, she would need to wait until other hospitals reopened after lockdown and outpatient departments began to function.
At a time with a nationwide lockdown and an uncertain future, Gangamma as a mentally ill homeless woman was left to wander alone in deserted streets, at the mercy of whoever could give her food, entirely forgotten by the state in its attempts to contain the spread of the virus.
The challenges faced by the system
When the WHO declared COVID-19 a Public Health Emergency of International Concern on January 30, 2020, it released a parallel briefing to emphasise the need for mental health and psychosocial services during the pandemic. The briefing anticipated a rise in stress, anxiety, and fear – people were afraid of falling ill with an infection that had no cure, of losing livelihood, and the isolation of lockdown. The WHO anticipated that societies would have to support their populations in a time of extreme uncertainty, not only with adequate essential services, but active counselling and support.
By late March, outpatient departments, including psychiatric outpatient departments of large institutions like the National Institute of Mental Health and Neuro-Sciences (NIMHANS) in Bengaluru, had to close. The lockdown took the country by surprise, and even though medicines were listed as essential services that would be available, and tele medicine was given new structured guidelines by March 26, institutions had to play catch up from their locations and context. A system for the transportation of medicines had to be created to reach all areas, far and wide, in the country. Given that state capacity in India is varied, the challenge of connectivity in rural areas would have to be dealt with by different states in different ways.
In India, mental health institutions across the country had to ensure that the chronic mentally ill had access to medication – especially people with severe mental disorders (SMDs) like schizophrenia, bipolar disorder, and even major depression. The system had to prepare both for the existing needs of persons with mental illness, and the anticipated need for increased psychological support of citizens, with uncertainty looming large about the economy and the spread of COVID-19.
The value of NIMHANS
In Karnataka, the advantage of having NIMHANS in Bengaluru made things less tenuous. In alliance with the Ministry of Health and Family Welfare of the Government of Karnataka, medicines were brought to all District Mental Health Programmes (DMHPs) and tele counselling services had begun by early April. All 30 districts in Karnataka had functional DMHPs which had a weekly Tuesday mental health clinic, and practitioners trained in offering psychosocial support to those seeking medical care.
By mid-April, over a lakh tablets had to be sent to pharmacies where patients could use their latest prescription to buy medicines. Doctors from NIMHANS began to contact patients on record from 2014, to inform them about the availability of medication. But there were 1,60,000 patients, and phone numbers were often found to be invalid or inaccurate, and not all patients lived at convenient distances from primary or district health centres, say doctors who are part of the process.
By mid-April, tele counselling helplines were offered across the country, run by hospitals and private medical facilities with social workers and nurses. Around 1,000 psychiatrists and clinical psychologists are now offering tele counselling via helplines, even as they continue to offer consultations via telephone or video when available, and 300 volunteers answer helplines for the general public. The Government of Karnataka began to air All India Radio programmes and a YouTube channel, “Jagruti Karnataka” to raise awareness on methods of coping. Simultaneously, webinars were conducted to train nurses, doctors, ASHA workers and district health professionals to deal with the mental health fallouts of the pandemic.
NIMHANS receives 3,000-4,000 phone calls a day. Those who were diagnosed with COVID-19 were struggling with self-blame and fear of social ostracism. Adolescents live with all their immediate hopes and dreams for the future suspended with exams indefinitely postponed. Pregnant and postpartum women are worried about access to medical care. There were complaints about stress, anxiety about the future, domestic distress and substance abuse.
Dr Naveen, Head of Community Psychiatry, says these tend to be “normal responses to an abnormal situation” and encourages those who call to maintain structured activity, exercise, food and diet. “Social distancing does not mean emotional distancing,” he says, and it is important that people are encouraged to stay in touch with one another.
Why mental health must be a part of public health
Patients already hospitalised in mental health facilities now had to be supported to understand social distancing and hand hygiene. For those with degenerative conditions like dementia, this new information is often difficult to understand. For those with Obsessive Compulsive Disorders, especially the washers, the fear of the virus was manifold. “With the WHO recommending repeated handwashing, it has been difficult to keep patients in remission and many have relapsed…fear of contracting COVID-19 is another new symptom”, said Dr Muralidharan, a professor at NIMHANS.
But institutes like NIMHANS not only treat patients in wards but have huge numbers of patients and caregivers travelling in from far-reaching corners of the country for out-patient treatment and affordable medical care. Patients and caregivers now had no access to outpatient departments where they could go in case of acute psychotic or manic episodes, panic attacks, or any condition that was too difficult to handle by themselves. In the Hospital for Mental Health, Ahmedabad, outpatient departments were seeing only 150 patients a day, half the number they usually treated. With outpatient services closed in other major district hospitals, the caregivers of the chronically ill had to look to primary health centres and DMHPs where they lived, and where available. And not all DMHPS are as robust as the ones in Karnataka.
In the Uttarkashi region of Uttarakhand, things are in bad shape. According to Dr Kaaren Matthias, a public health physician at Project Burans, a community mental health project, access issues due to travel and unavailability of medicines in district hospitals has led to a difficult scenario. Most people live hundreds of kilometres away from their nearest primary health care centres, and are now stranded with no means of transport to even collect the medicines they need.
In the region where Project Burans works, there are 30 patients in 72 villages who need active medical attention. With a minimum journey of twelve hours back and forth, and no medicines in stock, families have seen their loved ones relapse with SMDs.
Priyanka, a caregiver to her brother with psychosis, says, “We face financial stress…medicines are very costly when we have to buy them privately, as we cannot go to district hospitals due to the lockdown.” Anti-psychotic medications can cost Rs 2,000-3,000 a month, and with no daily wages to be earned, this is a big drain on the family.
Low stocks of anti-psychotic and anti-epileptic medication is not restricted to rural areas where the COVID-19 crisis has begun to lay bare the inadequacies of infrastructure for quality healthcare for the poor. Even Chennai, as an urban metropolis is facing the problem of no stocks of medication for mental illness. According to Dr Thara, co-founder of SCARF India (Schizophrenia Research Foundation India), it is unclear whether this is a manufacturing and supply problem, or because pharmacies have other medications to pursue and are letting these crucial drugs slip through the cracks. SCARF India is also receiving calls from as far as Uttar Pradesh and Bengal where caregivers are calling to request that medications be sent via courier, since they cannot access them where they live. A month into the lockdown, this is a cause for concern.
How the lockdown affects the mentally ill
Dr Thara is also concerned that several of her young patients who face psychotic episodes are suffering relapses even while on medication, due to the changed circumstances that have arisen due to lockdown.
For patients living with psychosis, a change in lifestyle in the home and disruptions of routine can be a threatening development and a lack of emotional space can be disabling. With crowded households and all family members at home, the stress of managing emotionally is demanding for the persons with SMDs. A critical comment from a family member can be very hard to cope with. Family members of people with SMDs will be further strained due to lack of access to the hospital and time outside their role as caregivers, and sometimes even because some patients can tend to wander away from home, which puts them at high risk of contracting COVID-19.
To attend to crises like these, psychiatrists from public and private hospitals are now offering tele counselling and telemedicine, which offers a chance at prescribing medications for patients struggling with their conditions and counsel for caregivers and patients.
Psychiatric medications are available only with prescriptions, and in the early days of the lockdown, a lot of patients and caregivers were concerned that lapsed prescriptions would not suffice at pharmacies. This problem has been solved in various ways with telemedicine guidelines, which allow patients to use their last prescription, or with doctors sending prescriptions as images on WhatsApp or being available on the phone to tell pharmacists to make medicines available.
But some medicines, such as one given for attention deficit hyperactivity disorder (ADHD) for children, remain outside the purview of telemedicine, and children with the condition face great distress due to the lockdown’s restriction on activity and lack of the tablets itself.
Does the system have enough capacity?
The supply chains for medications and the problems of access to medical care brings to light a problem that has been seeing increased attention with the rise in cases COVID-19 , that of the capacity of public health care systems. Where private hospitals can provide services if they deem themselves available, public hospitals carry on often under-resourced and under great strain.
To many public health practitioners, this is a moment when there is a need for convergence between private and public healthcare, and a strengthening of our public healthcare systems.
The lockdown and COVID-19 have also brought to the fore great levels of community distress, which require psychosocial support that has less to do with medication and more to do with counsel and strategies of self-care. Training nurses and general physicians across the board to deal with the anxiety, depression, and fears around COVID-19 can be done at the primary healthcare level, and according to Dr Rajesh Sagar, Psychiatrist at AIIMS, this can be done if psychiatric training is improved at the MBBS level itself.
Dealing with the fear of contracting coronavirus
According to Dr Rajani, Deputy Director of Mental Health in the Government of Karnataka, the misinformation of WhatsApp University, the visualisation of coronavirus in awareness campaigns, and endless news reports are beginning to scare people. Helpliness and government awareness programmes now direct people to seek reliable sources of information from the ICMR or WHO.
This fear of contracting COVID-19 is now a symptom that many of us struggle with. The fear has now mingled with prejudice, given vast misinformation linking the virus to particular social groups, and inaccurate details about the very nature of the virus. The current state of prejudice deeply coded into media messaging has created an atmosphere where even terminologies make the people diagnosed with COVID-19 sound like criminals. Terminology like “COVID-suspect” or “COVID-warriors” bring a violence to the virus that then seeps into human interaction. Recalling the HIV era, where blame became the prominent aspect of public health messaging, the work around COVID-19 has gained similar sinister overtones.
Dr Soumitra Pathare from Centre for Mental Health, Law and Policy has worked for a long time on suicide-prevention programmes, and was prepared in March 2020 to record and track suicides rates in India as the economic recession hit the country. To his surprise, he began to notice a rise in reporting on suicide since the lockdown, with nearly 130 suicides in the first three weeks, reported in prominent English dailies alone. Of these, about 80% were linked to problems ranging from alcohol withdrawal due to the lockdown, to fear of contracting the disease, social ostracism and due to loss of jobs and buying power. Given further economic recession that is about to hit, suicide is likely to be another problem for the government to pay attention to.
Additionally, there is a deep erosion of trust in the public sphere, from the police violence against stranded migrants, and extreme prejudice against healthcare providers and violence against doctors. This trust is more difficult to rebuild and a law against violence against doctors alone will not suffice.
The fears produced by the COVID-19 scenario are going to create greater psychological problems to come. Given the economic and livelihood impacts of the lockdown, jobs, income, and crises about the future can produce great anxiety. For students, the loss of their immediate future plans can set them back; for those responsible for households, the potential loss of job and uncertainty can beget further distress.
Dr Prabha Chandra, Professor of Psychiatry at NIMHANS, calls this a “disenfranchised grief”, or a deep sense of loss that most of us are beginning to feel in the everyday losses of hopes and dreams that we have to negotiate in a world that is in a great state of duress. This nebulous grief – the loss of an identity, a course of action, and even selfhood – is now going to engulf most of society.
As we move ahead, the building of long-term resilience in our systems with trust at the heart of it will become crucial as we move towards a new normal. The pandemic is an opportunity to build community resilience with strengthened community health programmes, and in the case of mental health, an improved District Mental Health Programme which now exists only in 125 of 625 districts (according to a study from 2015). Upto 72% of the rural population have only 25% of hospital infrastructure to access, and there are only 0.75 psychiatrists for a population of 1,00,000 Indians. Where now there exists primary health centres and DMHPs for “softer” mental health concerns, with multispecialty institutions tending to more “serious” mental health crisis, it will become important to build more care and systems for mental health for rural and remote areas, the socially disadvantaged and those who live in great poverty.
It is if we build a new resilience keeping in mind Gangamma who wandered with psychosis from her village, ending up in a locked-down hospital, that we have a chance at a way forward that is kind, and can reach the last possible mile.