In Uttar Pradesh, Dawa And Dua Go Hand In Hand

• Many initiatives have been launched across UP under the District Mental Health Programme

• The main initiative launched under the DMHP was the opening of ‘mann kakshas’ across 75 district hospitals

• Among all the initiatives, the Tele Manas Helpline Number (14416) has been a huge success

On a rainy afternoon in July, a busy highway lined with dhabas on either side took us to Mahona, about 25 km from Lucknow. A deserted bypass and a narrow lane led us to a dargah. The iron gate opened to an open ground. Heavy downpour had left behind slushy puddles; sunlight peered through the few trees in the compound, making the weather extremely humid. The half-constructed dargah was a vision of peace, but the space was filled with stories—of pain, trauma and suffering.

The dargah was a temporary home for around 300 families from Lucknow and the nearby districts. Each was with a family member who was living with some form of mental illness. Some were sitting on the open ground, some had taken shelter in the dargah compound and the others were huddled in the two crumbling shelter homes with their minimal belongings—clothes, ration and small cylinders for cooking.

Dozens of young boys were roaming around in chains; a few were tied to trees—their feet shackled in heavy chains and big locks. There were men and women, young and old, Hindus, Muslims and people from other religions. They all had one hope—that “baba” will cure their “pagal” family members if they stayed at the dargah for 40 days or more. Some had been staying there for weeks or months, putting their lives and livelihoods on hold, but their kin showed no sign of improvement. Yet, they hoped for a miracle, some magic.

Ram Narayan, a labourer from Lucknow, showed us the diagnosis of his son Abhinesh’s “pagalpan”. It read: depressive psychosis. “His health suddenly started deteriorating a year ago. He would abuse us and beat up his siblings. On some days, he would eat like a maniac, and for days, he wouldn’t eat a morsel. There were days when he would run for hours. We took him to a doctor who prescribed medicines. But his condition did not improve. Someone told us about this dargah. This is our last hope,” says Ram Narayan, pointing to Abhinesh, 18, who had been standing for three days. “He refuses to sit or sleep. We have to force him to do so. Hence the chain,” he says.

At some distance, Shailesh, 20, was sitting, tied to a tree with a chain. He started posing upon seeing the camera, which drew the attention of a few children who started mocking him. “When my son started becoming aggressive and violent, we first took him to a government hospital and later spent a lot of money at a private clinic. We will stay here till he becomes normal again,” says Bachan, his father, a labourer. “Please don’t take close-ups. We don’t want our neighbours to know about his condition. It will be difficult for us to get him married then,” says his mother.  

Sitting next to him, smeared in muck and tied to the same tree, was Ayaan, 18. “My husband died 14 years ago. Ayaan would drive an auto and help me financially. One day, his best friend died by suicide and Ayaan was the first one to see his body hanging from the fan. Since then, he is possessed. He looks skinny, but when he is hyper, even 20 people are not able to control him,” says Bibbi, his mother.

Each family had a tragic story to tell. They were too poor to afford prolonged, expensive treatments. “When medical science fails, people come here. We encourage them to go to a doctor first, but I believe, dawa (medicine) and dua (prayers) go hand in hand,” says Mohammad Akil Khan, the state head of the Pichchda Muslim Momin Samaaj Sangathan, Lucknow.

Incidentally, Dawa Se Dua Tak is one of the initiatives launched under the District Mental Health Programme (DMHP) in Uttar Pradesh. The DMHP was launched as part of the National Mental Health Programme (NMHP) in 1996. It was expanded to 27 districts in the Ninth Five Year Plan and now the programme is running in 767 districts. The aim of the DMHP is to provide accessible and affordable mental healthcare.

After the Mental Healthcare Act came into effect on July 7, 2018, many initiatives were launched across UP under the DMHP. The Dawa Se Dua Tak programme was among those. A large section of society still takes family members with mental illness to a religious place where an ojha (traditional healer) or the like “cures” the patients by performing jhaad phoonk. The aim of the initiative was to counsel and encourage such families to seek medical help.

The initiative is a replication of the Dava Aur Dua programme launched in Gujarat in 2008 by Milesh Hamlai, the founder of Altruist. The aim was to turn faith healers into allies and include them as key stakeholders in community mental healthcare. “We trained the mujawars (priests) to identify signs and symptoms of mental illnesses and behavioural problems among those who would come to the dargah and encourage them to also see a doctor,” says Hamlai. Since inception, more than 1.25 lakh patients have been treated across 22 states. The initiative is yet to pick up the pace in UP though.

The main initiative launched under the DMHP in UP was the opening of ‘mann kakshas’ (mental health counselling centres) in district hospitals across 75 districts of the state. Over the years, other initiatives—like Tele Manas, a helpline number—were added. It’s been nearly seven years since the DMHP was launched in UP. To know the status of the programme, we visited five districts—Lucknow, Unnao, Kanpur, Barabanki and Gonda—to understand how the initiatives are helping the beneficiaries.  

An Overburdened Lucknow

At 9:30 AM, Balrampur Hospital—the district hospital in Lucknow—was packed with patients. When we asked about the mann kaksha, we were directed to the first floor.  Surprisingly, there were so many patients outside the mental health unit that we could not even see the board. Patients were buzzing in and out of the Outpatient Department (OPD). They were then directed to the medicine counter and the administrative office to collect their files and take their next appointments. Everything was happening in a systematic manner.

“On an average, 200 patients walk in daily. They come from Lucknow and nearby districts like Lakhimpur Kheri, Bahraich, Gonda, Sitapur and Hardoi,” informs Abhay Singh, who has been working as a psychologist at the hospital for the past seven years and is a part of the DMHP. Do they come to Lucknow because facilities are lacking in other district hospitals? “Well, this is the biggest hospital in UP and also, getting medicines is easier here,” he says.

While depression, anxiety and drug and alcohol addiction- related cases are common, many patients with more serious illnesses like schizophrenia, bipolar disorder and psychosis also walk in. In case someone needs hospitalisation, they are referred to the psychiatry department at the King George’s Medical University in Lucknow.

As per the DMHP mandate, each district hospital is required to have seven staff members—a psychiatrist, a clinical psychologist, a psychiatric social worker, a psychiatry/community nurse, a monitoring & evaluation officer, case registry assistant and a ward assistant/orderly. “The DMHP is fully operational in 50-55 districts. In some districts, we don’t have full staff, but we positively have counsellors in all the 75 district hospitals,” claims Singh.

While awareness regarding mental health issues has gone up, especially post-pandemic, and people are not hesitating to ask for help, there are roadblocks. There are very few trained professionals and they are just not enough to cater to the staggering number of patients. While Singh feels the human resources crunch is a major problem, Garima Singh, clinical psychologist at the hospital, says at times, it’s difficult to make people, especially those from small towns and villages, understand the nature and seriousness of the disease and why is it important for them to continue taking medicines for months or years or sometimes lifelong.

“While seeking treatment for mental illnesses is no longer taboo, we still need to do a lot in terms of spreading awareness. Our social workers branch out to Primary Health Centres (PHCs), Community Health Centres (CHCs), places of worship, jails and schools and also collaborate with NGOs and suicide prevention centres, but more needs to be done so that the focus can shift to prevention and treatment,” she says.

PK Shrivastava, the DMHP nodal officer at Lucknow, asserts that among other schemes, the Tele Manas Helpline Number (14416) has been a huge success. “Data shows that people are calling from all corners of the state and asking for help. The fact that they get instant professional help has made the initiative a success. The DMHP is now in auto-pilot mode. However, word-of-mouth would really help. Beneficiaries talking about the positives of the programme would help us take our initiatives to people living in remote, interior villages as well,” he says.   

Despite the apparent success of the DMHP at the district hospital, volunteers at Badlav, an organisation working in Lucknow in the field of rehabilitation of beggars, were not aware of the mann kaksha running in Balrampur. It wasn’t a case of ignorance, but simply a lack of awareness that Shrivastava was mentioning.

On a muggy July evening,  homeless people who had been brought in from prominent locations in the capital city were engaged in different activities inside the two-storey, 20-bed shelter home. Dinner was being cooked in the kitchen. On the office dashboard were colourful drawings made by the beneficiaries. The ones by Anand Kumar, 38, and Badal, 18, stood out. They had visible consequences of drug and alcohol consumption on the human body. Both Anand, who hails from Lakhimpur Kheri, and Badal, from Barabanki, ran away from their respective homes. Both shared traumatic family histories and had challenges with harmful drugs and alcohol use when they were brought to the shelter from Hanuman chowk in Lucknow. At the time of their admission, they suffered from severe depression, trauma, low self-esteem and had suicidal tendencies. It took several months of intense counselling before they could feel like themselves again.

“Most of our beneficiaries suffer from depression. Cases of bipolar disorder, schizophrenia and drug and alcohol addiction are also common. Once they show signs of recovery, we help them with skill mapping and development and rehabilitation,” informs Sharad Patel, who works at Badlav.

While the government has provided them the shelter home, it is a handful of employees at Badlav who share the burden of mobilisation, counselling and rehabilitation. There is only one psychologist catering to dozens of beneficiaries battling various mental health illnesses. “Listening to these painful stories over and over again affects me and, at times, I also feel the need to take therapy,” says Rupesh Shrivastav, 25, the psychologist. Commenting on how mental illness continues to remain an invisible health condition when it comes to the marginalised communities, he says: “People often fail to recognise that homeless people can have mental health issues too. They are not even counted. There is a need to fill this gap.”

The lack of any data or relevant numbers is a major policy loophole, says Patel. The first and the last mental health survey was conducted in UP in 2015-16. It’s been 10 years. People also battled a pandemic in between, during which a spike in depression cases was reported. “Unless we have specific data, it will be difficult for us to formulate a policy that will help us reach out to the maximum number of people,” says Patel.

While volunteers at Badlav and doctors at Balrampur hospital reiterated that talking about mental illnesses is no longer a social taboo, even in villages and small towns, and people are gradually coming out and asking for help, there are also many who are still relying on ojhas and jhaad phoonk. Unaffordable medicines, prolonged treatments and repeated hospitalisation often lead to families giving up on treatment midway. This trend was more visible in smaller districts like Gonda, Barabanki and Unnao.

The Gap Widens in Unnao

Narrow lanes in a market place in Unnao, 60 km from Lucknow, led us to Kila choraha. Raja Hussain Jaffri, the caretaker of a famous imambargah in Unnao, came to pick us up on his bike. As we approached our destination, painful cries of women were heard. While some women were holding on to the grill of the iron gate and screaming, the others were crying out loud. Some were rolling on the floor. “They are letting out. There is a belief that if you share your pain with the baba, he will listen to you and help you out. People come here all year long from Unnao as well as from faraway districts and states. People from all religions and all strata of society come here,” he says. Are they encouraged to go to a doctor first? “Yes, but we don’t force them. They come here by choice and are convinced that they will heal. Besides, not everybody can afford those expensive medicines. If a labourer who earns Rs 400 a month has to spend Rs 400 on medicines in a day, how can he continue with the treatment?” asks Jaffri. The interview had to be halted a couple of times due to the uninterrupted screaming in the background. As the sun set, the cries grew louder and more intense, giving the place a spooky, ghostly vibe.

Earlier in the day, general apathy was felt at Unnao District Hospital. A flight of stairs led us to the mann kaksha on the first floor. Empty benches and cabins greeted us. Hospital staff didn’t know where the doctors were. In an adjacent corridor, a few patients were walking in and out of the OPD dedicated to mental health. The lone doctor refused to comment. The other rooms were scattered across the corridor. After being shuttled from one room to the other, we could finally meet Saraswati Rani, psychiatric social worker, and Deepak Sahu, the M&E officer—the only DMHP professionals present at the hospital on that day. When asked why there was no dedicated floor or corner for the mental health unit, they smiled. “We don’t even have a washroom. These administrative issues hamper our way of functioning, but this is what we have,” says Sahu.

Saraswati Rani opened up about the situation in Unnao and says: “The major challenge is getting people to the hospital. Their first preference are the ojhas. We have a large number of epilepsy patients here. People associate the symptoms with someone being possessed and opt for jhaad phoonk. We also have a drug problem here. School and college-going boys are addicted and need counselling, but parents hesitate to bring them here as they fear their children will be labelled as pagal.” While a change is visible, there is still a long way to go, she says.

The mental health unit at Unnao District Hospital, at best, works as a counselling unit. There are no beds or advanced treatment facilities here. Patients with severe illnesses needing hospitalisation or prolonged treatment are referred to Kanpur District Hospital. These families, for whom even daily bread and butter is an existential problem, often struggle to spend money on commuting and further treatment. Unnao’s gaps thus end up becoming Kanpur’s burden. But is Kanpur well-equipped?

Kanpur’s Missed Opportunity

Kanpur Nagar was among the first few districts in the country where the DMHP was launched in 1998. There was a mandate to have a 10-bedded inpatient unit at Kanpur District Hospital. It’s been almost 30 years, but the hospital still has only 10 beds dedicated to patients with mental illnesses. What’s worse, these patients and their families have to share space with regular patients—these 10 beds are a part of the 350 beds at the hospital. The patients and their families get no privacy. Those with higher clinical needs are referred to the Kanpur Medical College, as the district hospital is still not equipped to handle severe cases.

Like Unnao, lost patients were shuttling between different rooms in search of the mann kaksha and it seemed there was no system in place. Despite the inadequacies, the mental health unit at Kanpur District Hospital is a busy one. “We also get patients from nearby cities like Farrukhabad, Kannauj and Fatehpur as there are no counsellors or psychiatrists at the PHCs and CHCs there,” says Sandeep Kumar Singh, psychiatrist social worker at Kanpur District Hospital.

Being among the districts where the DMHP was launched in the initial stages, Kanpur could have evolved and shared Lucknow’s burden, but that is not the case.

Barabanki and Gonda: A Long Way to Go

Barabanki was another location where we met more patients at a famous mazhar than at the mann kaksha at the district hospital. In one corner of the mazhar, Mohammad Salim from Varanasi was trying to cut the chain tied around his son Shah Alam’s injured feet. The previous day, during an episode of mania, Shah Alam, 27, had broken the chain with his bare hands, unlocked himself, dodged the 200-odd people at the mazhar and ran barefoot for about two hours on a highway. It was difficult for his family to locate him and bring him back. Now, a sober Shah Alam, who sustained injuries, was crying in pain. Two years ago, he worked as a mobile mechanic and loved playing with his five-year-old daughter. “His wife left him. It’s been a year that we are living at the mazhar in a hope that he will get better, but he isn’t. We are tired,” says his old father.

In another corner, Ankit Kumar Gupta, who has done his graduation in mathematics as well as a course of an electrician from an ITI, was happy that he could go back home now that he was feeling better. “We lived here for six months and he is much better now thanks to baba’s blessings So, we are taking him back,” says his sister. When asked if she would bring him back here or take him to a doctor should his condition deteriorate after going back home, there was silence.

At a distance, Champia, wearing maroon a salwar kameez, was repeatedly requesting her young daughter to open her chain and set her free. The two had come from Mumbai. Sitting next to them, Mohammad Washiq was combing his wife Shahnaz Bano’s hair. Wearing a bright yellow salwar kameez, she was absent-mindedly playing with the chain tied to her feet.     

“Most families think their family members are pagal. The doctors don’t explain the health condition to them. They don’t make them understand why the patients need hospitalisation or why they need to continue taking expensive medicines. Most families stop treatment midway and come here,” says Kamil Ali, the caretaker of the mazhar, who, over the years, has seen many patients recover and go back home.

People leaving the treatment midway was also a point raised by Nupur, consultant psychiatrist, at Barabanki District Hospital. “On the one hand, we have patients who are doing self-diagnosis by watching YouTube videos, on the other, we have those who come here after jhaad phoonk fails. Neither category completes the treatment,” she says. Talking about the roadblocks, she mentions that many times, people from interior villages find it difficult to come all the way to the district hospital. “Maybe, we should have mobile vans for such patients,” she adds.

She was the only one present at the district hospital mann kaksha on a rainy Saturday morning. It was the only location where the mental health unit was located in a separate building, although the infrastructure was in a dismal condition. Monkeys were sitting on the broken benches outside and the desk and chairs were covered in a layer of dust. There was no sign of any equipment or beds.

The situation was worse nearly 80 km away, in Gonda District Hospital. The hospital staff had not heard about the mann kaksha and were not aware where it was located—in the old building or the new one. After shuttling between the two for nearly half an hour, a cleaner working at the hospital finally said: “Achcha, wo jaha paglo ka ilaaj hota hai!” The mann kaksha here was just one desk and one chair, with a board hanging in the background. The walls were paan-stained and broken chairs and equipment were dumped in what was supposed to be the counselling centre. Two psychiatric social workers emerged from somewhere; the rest of the five posts have been vacant for the past five years.    

To know the situation in the interiors, we travelled an hour to reach the remote Gaurasinghpur village. The two ASHA workers here had not heard about anything to do with mental health. One of them vaguely remembered a mental health camp she attended at the nearest PHC five years ago. So, what do they do when someone from the village approaches them with any mental health issue? “They don’t come to us. We have never come across any such cases,” they say.

One of them confessed that when her daughter and a few other girls from the school needed help, after they were “possessed”, the families hired two cars and took them to Lucknow District Hospital for treatment. “A lot of money went in commuting to Lucknow. We knew we won’t get any help in Gonda,” she says. When asked if the girls get “possessed” again, will she opt for dawa or dua, the husband of the ASHA worker says: “Ab bhagwaan dekhe. Aur paise nahi hai hamare paas.”

In its August 21 issue Every Day I Pray For Love, Outlook collaborated with The Banyan India to take a hard look at the community and care provided to those with mental health disorders in India. From the inmates in mental health facilities across India—Ranchi to Lucknow—to the mental health impact of conflict journalism, to the chronic stress caused by the caste system, our reporters and columnists shed light on and questioned the stigma weighing down the vulnerable communities where mental health disorders are prevalent. This copy appeared in print as 'A Difficult And Necessary Place’