Care seekers drivers of their mental illness journey

[Rituu B. Nanda]

Schizophrenia Research Foundation (SCARF) has been using CLCP and SALT to build ownership of those with mental illness and their families in the PIECES project, Tamil Nadu, India.  In January 2025, SCARF organized a Knowledge Fair, which saw participation from Ekati and Avani organizations as well. My key takeaways:

Who is the expert in mental health and illness? Medical experts – psychiatrists, psychologists, and social workers – are traditionally seen as the authorities to diagnose and treat. However, I have come to realize that those with lived experience should never be passive recipients of care. Their experiential knowledge is invaluable, and they must be the decision-makers of their own health. 

Mental health professionals beyond handing out prescriptions They can help those with lived experience discover their own strengths. It is about shifting the focus from “fixing” to “learning from” – because who knows better about your own life than you?  Approaches like SALT and CLCP can offer a sense of hope, helping those with lived experience not just survive but thrive. They can see a future where they are driving their own recovery. They can picture themselves fully in control of their lives, making choices that allow them to flourish.

Hierarchy between mental and physical health- People place physical health above mental health with conditions like depression, anxiety, or schizophrenia.. There is a tendency to medicalise mental health conditions, treating them as something purely biochemical or psychological rather than considering the wider social and cultural factors. We also notice the interplay between the two health conditions. 

Language – it matters more than we realize. Organisations like SCARF prefer the term 'service user' as it avoids the stigma often associated with 'patient'. But why stop there? Even better, Ram suggests using the term 'care-seeker', further emphasising the active role individuals play in their health journey.

Collective social care is as important as self-care- Mental illness can be isolating, so families are often the first line of care.  Families play a pivotal role, but so too do extended families, friends, and neighbours. For students, educational institutions are key and workplaces have the power to make a significant difference for those juggling their jobs and mental illness. Collective response can help to break down the stigma surrounding mental health.

Homelessness & mental illness  Anuradhaji, who initiated SALT in Avani now is also considering it Ekati – an organisation running five shelter homes in Kolhapur – mentioned that eight out of ten homeless individuals suffer from mental illness. As people with mental health conditions are often met with fear or seen as a source of shame, families frequently abandon them or treat them in such a way that they feel compelled to leave their homes.

Actions post the Knowledge Fair- Ekati team went back to Kolhapur very inspired after meeting caregivers, care seekers and the SCARF team. Now we see Ekati have started adopting SALT in their work in shelter homes.

(Sincere gratitude to the care seekers, their families, SCARF team, and Dr Kausar with IRD team and Anuradhaji and Pushpa from Ekati team for what I have learned from them.)