Mental Illness and the Human Face of Marginalisation, Stigma and Discrimination

Photo: Gede Foundation

“Why must I be in bondage – doesn’t everybody deserve to be free?” she asked with tears in her eyes. Laura (name changed) has been living in physical bondage “for years” but was allowed by her caregivers to attend a mental health camp run by the Gede Foundation in Abuja, Nigeria in late March 2016. The camp was the first in a series of programmes run under a social franchise agreement with BasicNeeds UK, with support from BasicNeeds Ghana and funding from Grand Challenges Canada.

Laura’s history of mental illness is connected with the birth of her first child, after which she began to “act erratically” and exhibited symptoms of mental illness. The initial treatment pathway involved visits to local pastors who suggested physical confinement and isolation due to a perceived “flight risk.” Laura was then shackled to a pole in the middle of a church where a pastor prayed for her, fed her, and released her from chains only when she needed to use the bathroom.  Laura’s frustration increased as she began to realize that her “treatment” was leading to little more than further stigmatization from her community as her mental illness continued. Meanwhile, she was unable to engage in any income generating opportunities and was increasingly becoming a “burden” on her family. Laura’s family was aware that mental health expertise existed that could help treat her, but they could not send her to the large and expensive (and often stigmatizing) urban hospitals where she could receive such treatment. However, Laura was able to attend Gede’s Mental Health Camp with the recognition that the programme would offer community based access to a trained psychiatrist.

Working Towards a Solution

As with all under-served and stigmatised health burdens, there are no easy solutions. The inclusion of mental health in the Sustainable Development Goals (3.4 – By 2030, reduce by one third premature mortality from non-communicable diseases through prevention and treatment and promote mental health and well-being) is an important recognition of the human and economic cost of mental illness and pushes communities to find sufficient expertise to be able to deliver quality care.

The approach of the Gede Foundation (working with BasicNeeds) is focused not only on addressing stigma and discrimination, but also on enhancing the understanding of mental illness through the formation of self-help groups and engaging community leaders. In addition, the BasicNeeds model combines the mapping of livelihood opportunities for those suffering from mental illness (and their caregivers) so that income opportunities can be engaged at the earliest appropriate stage of recovery. This has the added benefit of allowing people to afford psychotropic medication when needed, as well as making them feel, yet again, worthwhile members of their community.

Lessons Learned and the Future

Gede began implementing the BasicNeeds model in March 2016 and aims to reach 1000 people living with mental illness or epilepsy and 800 primary caregivers and family members over the next two years. Initial lessons learned have focused largely on the need to, (i) see mental health in a holistic manner and to clearly recognize the cross-cutting impact of mental illness related to education, health and livelihoods, (ii) generate appropriate and high quality research, often into prevalence and impact, as related to mental illness. It is difficult to gain traction with community leaders and decision makers without well thought through and credible evidence, (iii) develop long term approaches to address the “treatment gap” (the number of people needing treatment related to the number of trained health workers available to provide it) which, initially, needs to focus on enhancing key screening/treatment and referral skills within lay health workers at the community level, (iv) engage with existing structures within communities to encourage the formation of mental health self-help groups which are pivotal in helping to address issues of stigma and discrimination (as well as giving an amplified voice to those who are suffering from mental illness), and, (v) ensure that all tools (most of which have been designed for use in high income settings) used in screening/diagnosing mental illness are culturally adapted and are, consequently, appropriate for the specific circumstance in which they are to be used.

Advocating only for “more treatment pathways” is commendable, but one-dimensional within the context of mental illness in low- and middle-income countries. Culturally adapted and validated approaches to research and stigma reduction also play an essential part in bringing this key issue “out of the shadows.”

For further information regarding Gede’s work in Nigeria, visit www.gedefoundation.org

Learn more about our work on disabilities at un.org/disabilities