October 2014 | Jai Madan

Hope and a helping hand

To address the problems faced by India's mental healthcare sector, Tata Trusts are working with several nonprofits in setting up collaborative community-based care models and tertiary care institutions to extend timely medical care

Dishevelled and unkempt, 28-year-old Malati (name changed) was found wandering the streets of Pune with no recollection of how she came there from her home hundreds of kilometres away in the state of Chhattisgarh. When Maher, a Pune-based nonprofit that works with destitute women, children and men found her, she was extremely unwell with overt symptoms of schizophrenia. With the support of Parivartan, a nonprofit that has worked in the area of mental health for several years, Maher arranged for Malati's treatment and helped rehabilitate her back into the community. Today, Malati is much better, works at a local mall, has been reunited with her family and supports them financially through her earnings.

India's urban and rural spaces are filled with thousands of patients like Malati, who are often on the streets because they have no caregivers. Unlike others, Malati was slightly more fortunate — she received timely help, both medical and social, that helped her recover.

At the primary health centre in Limb village, Satara, two women discuss their cases
Mental healthcare in India is riddled largely by inadequate medical and professional services, most of which is provided through an out-of-pocket payment based system in the private sector. Lack of access to treatment is a huge problem, compounded by ignorance, negative attitudes and social stigma, that often leads to discrimination, ill treatment and violation of human rights.

There is also a need to examine alternative methods of making mental hospitals more responsive to the needs of those suffering from severe mental disorders. To reach out to people in need, Tata Trusts have partnered with nonprofits like Parivartan and Sangath, who are working tirelessly in this space.

One initiative that caters to people like Malati is Incense (integrated community care for meeting needs of vulnerable persons with severe mental disorders). The Incense initiative is based on the idea of collaborating with mental hospitals to implement services that are need-based, contemporary and locally relevant. Incense is thus implemented as a partnership between Sangath, Parivartan, the Regional Mental Hospital (RMH) at Yerwada, Pune, and the Lokopriya Gopinath Bordoloi Regional Institute of Mental Health in Tezpur, Assam. The Tata Trusts have provided a grant of Rs30.38 million to Parivartan and Rs31.9 million to Sangath, to build effective intervention models for the mentally ill.

Parivartan also hosts and is the hub for the community-based Jan Man Swasth Programme (JMSP) to address the mental health needs of people with 'priority' disorders like psychosis, depression, epilepsy, problems due to alcohol abuse and suicide attempts. There are currently six such sites where the JMSP is being implemented by the following partners — Ashadeep and ANT in Assam, the Foundation for Research in Community Health and Parivartan in Maharashtra, the Jan Chetna Manch in Jharkhand and the Ramakrishna Mission Hospital at Varanasi. The Tata Trusts have funded this programme by enabling grants to all these agencies.

Dr Sudipto Chatterjee, a psychiatrist by profession, is the programme director. He has a vast body of knowledge and experience in the field of mental health. Ashagram, the first community-based mental health programme in the country, was started by him. Dr Chatterjee and co-programme director Dr Hamid Dabholkar, a psychiatrist and founder member of Parivartan, oversee the management of the Incense and the JMSP programmes.

A network of support
The JMSP programme's aim is to establish and evaluate a community-based care system for those affected by mental disorders. Tasneem Raja, senior programme officer, health, at the Tata Trust, explains the objective: "While we have funded several mental health initiatives in the past, we realised that much more work was needed. We wanted to create something that would impact a large number of people. The aim of this intervention is not merely to treat the disorder but to restore the person back to as much functionality as possible, which means you must have livelihood and adult literacy linkages, along with other support. The intervention is hence based on a development context rather than only a medical context."

The programme aims to advocate and facilitate the systemic integration of mental healthcare services within the public healthcare system. At one of the sites in Satara district, Parivartan works with several primary health centres (PHCs) in integrating mental health services within the existing public health system. On an average, one PHC in the district serves approximately 22 villages with a total population of around 46,000 people. Each PHC has only two medical officers who alternatively visit the PHC every three weeks. They work with nearly 40-60 patients every day. On an average they come across 3-4 people who have some form of mental disorder.

The team has developed an intervention package of community-based psycho-social rehabilitation and they train doctors and community health workers to help identify people with severe and common mental disorders (like depression and anxiety) so that they can get timely help and medical intervention. The community health workers also organise health awareness talks in villages and make home visits, as necessary. They also reach out to those suffering from epilepsy and alcohol-related problems.

Roopali Bhosale (standing) programme coordinator and master trainer, Parivartan team, with three community health workers
Sultana Mulani, a community health worker who has been trained by Parivartan, explains the challenges of the task: "Earlier, people would not be forthcoming if somebody in their family had a mental disorder. Many of them would chain or lock up the patient if there was no one at home to look after him or her. But slowly this is changing. Because of our healthcare awareness programmes in the villages and after seeing the benefits of medical treatment, people are seeking our help and intervention."

The JMSP faces huge challenges and obstacles, not the least of which is social resistance. Making systemic changes is not an easy task.

Yet, what keeps the teams going are the success stories like that of Malati and the others, whose lives have changed for the better. Eventually, JMSP will scale up these intervention programmes across the country, every 100,000 people per site.

Package of care
The Incense programme works with three of the most vulnerable categories of people with severe mental disorders: long stay residents of mental hospitals (those who have been in a mental hospital for more than one year); homeless mentally ill persons and patients living in the community who do not have access to medical treatment and care.

After an initial review of 669 long stay patients, the Incense team at Pune identified 200 patients who would receive comprehensive intervention. The team's effort has been to improve the quality of life of these people, many of whom have lost basic life skills because of their isolation from the outside world.

Dr Dabholkar explains: "We have developed packages of care which includes leisure and livelihood activities, psycho education, farming, etc, and started re-skilling those suffering from moderate mental illnesses. We have been able to reach out to nearly 100 people from both sites and have managed to rehabilitate them, either in their old job or in a new job."

Shamika Bapat, a psychiatric social worker from Parivartan who works on this project, adds, "Once the patients feel better, we educate them on the importance of taking regular medication, symptom management, relapse management, along with life skills such as handling money, using a mobile phone, etc. We try to develop their livelihood skills through activities like making paper gift bags, handmade paper diaries and clay beads." These creative activities may not bring in a significant income, but have a great therapeutic benefit.

The team in Pune has also set up a separate long stay and transit ward within the Yerwada mental hospital campus, with help from the hospital authorities. While the civil work for these wards was undertaken by the hospital, refurbishment was done through the grant received from the Tata Trusts.

The long stay ward can accommodate around 60 patients who have been identified and will soon be shifted there. Here they will be further skilled and trained for a livelihood-based activity. Some of the patients will move to the transit ward — a bright and cheerfully painted room — which is a preparatory stage before they move out into the community. Even that will be done in stages, with the patients first moving into a community home where they will learn to lead independent lives and later making the attempt to reunite with their families and integrate back into the community.

Homeless but not alone
The Incense programme also works with homeless mentally ill persons across both Pune and Tezpur. The project offers direct counselling and medical treatment by taking the help of local authorities such as the police and the community. The afflicted are taken to the nearest mental hospital for treatment. Once they show signs of improvement, the programme staff works with organisations like Maher and others to help stabilise and rehabilitate them further. In many scenarios, contacting families is possible. The programme engages with the individual and family to facilitate the person moving back home with adequate support to address some of the challenges that led to homelessness in the first place, most commonly unbearable financial strain.

The challenges are many — patients are non-cooperative because they fear being confined in a mental hospital; communication is difficult since some of the patients come from different states and do not speak the local language; family members cannot be traced or are unwilling to take in the patient; and so on.

Long stay ward at the Yerwada mental hospital in Pune
The homeless are the worst off — especially women, many of whom have been physically and sexually abused. Many suffer from other serious illnesses because they have been neglected and uncared for. The Parivartan and Sangath teams are currently working with about 40 such people in Pune and 24 in Tezpur respectively.

The final component of the Incense programme is a collaborative, multi-sectoral method of extending need-based services to people with such disorders living in the community. This is provided in collaboration with the hospitals at Tezpur and Pune through trained and supervised non-specialist health workers who provide home-based care, information to manage the illness better to the individual and the family, encouraging compliance with medical treatments, access to employment, social support, financial and social inclusion.

Dr Dabholkar appreciates the support and role that the Tata Trusts have played. "The Trust has been with us from the start — right from selection of the sites and NGO partners, developing the framework to giving us the required funds and being flexible in the use of these funds. The support has been phenomenal — they have invested into the dream and the idea."

For the millions of patients suffering from mental disorders in India, the Incense and JMSP initiatives offer a ray of hope. These programmes don't just work to bring about a systemic and sustainable change in the mental healthcare sector but also ensure that help is available and accessible to those in need.

Community housing for women
The Parivartan team at Pune managed to move out a few women patients from the mental hospital to Unnati Niwas, a community home funded by the Trust. The home provides these women with a safe place to stay, one with a warm atmosphere and where they have a little more freedom. There is a supervisor who ensures that the patients take their medications regularly to keep their illness in check. Currently four women live here, two of whom have got jobs, while the other two manage the house chores.

Fifty-year old Sarita Lajput (name changed), one of the women living in the home, makes office files, a job which she is proud of and for which she gets paid. "I am very happy here. It is much better than staying in the hospital where I had to do a lot of menial chores," she says. Thanks to the Parivartan team, these women lead near-normal lives. The team has also helped these women get Aadhar (unique identity) cards, open bank accounts and maintain fixed deposits.