Community mental health brings hope to India
By Margaret Angus
Like countless other families in India, Sanjay and Rita Seth have struggled to care for a loved one with mental illness with no community supports.
“The problem is enormous,” said Sanjay Seth via a Skype interview. “There’s very little being done in the areas of recovery and rehabilitation in mental health.”
Seth said the stigma of mental illness in India is significant.
“The need for understanding the illness, the real needs of a person with mental illness, their necessary supports, ways of handling the person and hope are the key elements in a healthy approach to mental illness." he said. "Mental illness is very hidden in India. There is practically no preparation in society whatsoever to participate in the recovery process of the mentally ill.”
Weary from their experience and knowing others faced similar challenges, the Seths – together with a number of families – started a self-help group for caregivers, and recently formed the Sambandh Health Foundation with the intent of creating greater supports for families and people living with mental illness in India.
Exploring possibility, seeking inspiration
In summer 2010 the Seths travelled to North America to learn about existing community mental health recovery models, including Connections Halifax. As soon as they walked in the door of Connections, they were impressed by the spirit within. A member gave them a tour of the building and staff eagerly shared their success stories.
“We found the whole experience amazing,” said Seth. “The staff at Connections are incredibly passionate and knowledgeable people. They have been very successful in developing a recovery model.”
The Seths were exposed to the reality that people living with serious mental illness do recover to live meaningful, productive lives. They were inspired by hearing from Connections members who had been in hospital for long periods of time and are now, with support tailored to their needs, living successfully in the community and maintaining employment.
They returned to India with the Canadian Mental Health Association’s (CMHA) A Framework for Support, a key document that guided the development of Connections, and that Seth called a “huge ray of hope.”
In the ensuing months, the Seths worked closely with Nancy Beck, director of Connections Halifax, to modify the Canadian document to fit the Indian context. They also planned a national conference on community mental health rehabilitation– the first of its kind in India.
In October, Beck along with Catherine Slone, wellness co-ordinator at Connections, attended the conference, engaging with family members, community agencies, health officials and academics in animated discussions on recovery.
Initially planned as a small workshop, the conference drew more than 100 people from across the country, including the federal of Minister of Health and Family Welfare and the Delhi State Minister of Social Welfare.
“It led to a lot of people enthusiastically connecting and trying to figure out ways to help each other,” said Seth.
During their time in India, Beck and Slone described the Connections model to families and conference participants.
“The first time we met with family members they considered themselves doomed,” said Beck. “They live fearful, isolated and burdened lives with no sense of hope for the future. When we spoke about recovery, they had a difficult time understanding the possibilities and comprehending the evidence that consumers are leading meaningful lives and living successfully in the community.”
Slone agreed, saying, “They were hungry for hope.”
Beck said one gentleman challenged the Halifax experience, continually shaking his head in disbelief.
“Now he is the biggest advocate for change," she said. "His entire perspective has shifted once he grasped the possiblities. He’s now holding hope for his brother’s future.”
Making it happen
Knowing what is possible, the Sambandh Foundation is preparing a proposal for the Ministry of Health to pilot a program based on the Connections model in a Delhi neighbourhood. The Foundation hopes this will eventually lead to the rollout of similar programs in other parts of Delhi, and eventually, India.
“The government is committed to improving the current situation,” said Beck. “At the conference they announced they have the resources and are planning to develop community mental health programs across India. They are committed to improving the situation for consumers and their families. The challenge in a country of 1.2 billion people is: where do you begin?”
The Connections model and the CMHA Framework for Support give the Foundation and government a very tangible starting point, Seth said.
“As we move forward with planning, we are using both of these models; they are what we were missing in our rehabilitation and recovery programs.”
Like Connections, the Sambandh Foundation is committed to involving communities in the development of programs. “We want communities to take ownership,” said Seth, who has been sending draft documents along to community members for feedback and dialogue.
Connections will continue to work closely with the Sambandh Foundation, which Slone credits as being “true pioneers.” Beck shares Slone’s admiration. “This group of families has a vision for changing mental health in India. They are courageous, committed and fully understand the challenges and opportunities before them.”
Why do professionals at Connections – and by extension Capital Health – feel it important to reach out and provide support globally?
Beck and Slone agreed that in spite of any resource constraints we face in Canada and within Capital Health, we are fortunate to have the opportunity to provide community mental health support through a model that enables recovery.
“It’s our responsibility to reach out and share the opportunity we’ve been given,” Slone said.
Beck added, “Our role as guides offers hope, as we share our experience and help the Foundation envision their unique way.”
For the Seths and many other families, the link with Connections has shone a light into the darkness. “For 28 years we’ve had to struggle,” said Seth. “There was no light at the end of the tunnel. We just lived with it.”
Having seen what’s possible, there’s no turning back. When it comes to transforming community mental health in India, the Sambandh Foundation now has hope, and a plan.