A Step in the Right Direction: Meaningful Engagement of People Living With Mental Health Conditions in the Africa Region

Written by Godfrey Kagaayi

On April 27th and 28th, Lea Kilenga Masamo Bey and I co-chaired the WHO Informal Consultation with People Living with NCDs (PLWNCDs) and Mental Health Conditions (MHCs) in the African Region. 

This regional consultation was a valuable opportunity for all to listen and learn from different perspectives, especially those with lived experience. It brought to life the regional and local mental health contexts as well as practical considerations for a meaningful and inclusive engagement of PLWNCDs and MHCs.

Through founding Twogere, a not-for-profit community-based organization working to challenge mental health stigma and discimrination in Uganda, I’ve become very aware of the mental health challenges my country and the Africa Region face. In Uganda, it is estimated that 35% of Ugandans suffer from mental illness, and 15% of Ugandans require treatment; however, less than 1% of the 9.8% of its GDP allocated to health care is used for mental health treatments. The gap between the needs and investment in Uganda has led to inadequate mental health services, with little or no community care and in-patient services. Through co-chairing this consultation, I heard firsthand that many others shared this issue across the African continent.

In Uganda, traditional beliefs ascribe mental illness to spirits and witchcraft. This often leads to individuals seeing traditional healers, either voluntarily or under coercion. Those people will be chained or tied for periods while the spirits are ‘warded off’. Approximently 80% of individuals in Uganda's mental hospital had previously seen a traditional healer. 

The COVID-19 pandemic has amplified the mental health service gaps in Ugandan society. When the coronavirus hit, the few mental health care services that were available were turned into COVID-19 isolation centers. Additionally, the mental impact of the coronavirus through social isolation, being away from loved ones, and financial insecurity will likely leave long-term marks on the mental health of the people in Uganda.

What we see is a lack of commitment by African governments to mental health. Typically, mental health is treated as an isolated case, as something that is not integrated into mainstream health care. Much of this of course is due to the stigma and discriminationof people living with MHCs. Stigma and shame are barriers to receiving mental healthcare and consequently, many people with mental health problems continue to suffer in silence.

This informal consultation also confirmed the lack of community services. Ultimately, there needs to be a focus on community-based initiatives for people who are directly affected. We need community safe spaces where people can merge and talk about issues that affect their livelihood. 

Finding the best possible solutions for people experiencing mental health conditions, in Uganda and the wider Africa Region, should promote a human rights-based approach. Our actions should be rooted in rights-based, holistic approaches, and hold closely the lived experience of those left behind.

There is no doubt that meaningfully involving people with lived experience will help address the mental health challenges the Africa Region is facing, as those individuals are a great resource and know what works and what does not work. The consultation also asked the question of how this can be done? I learned that there is the need for an approach where individuals with lived experiences of NCDS and MHCs are continuously engaged in areas of policy formulation, research, project design and implementation. Moving forward as a region, we must call on organizations and governments to meaningfully engage with individuals with lived experience.

This informal consultation was a great opportunity for me to connect, share, learn, and reflect together with other lived experience leaders from across the continent on the state of mental health, and what should be done to improve the mental health needs for all.

Godfrey Kagaayi is a prominent mental health advocate from Uganda. He is the founding Director of Twogere; a leading mental health charity with hundreds of committed young advocates starting mental health conversations everywhere in Uganda. Godfrey is also an active member of the HBGI Lived Experience Council, where he co-leads the evaluation workstream.

1 June 2022