Born 33 years ago, in Bukoba, northern Tanzania, Godfrey Kagaayi did not have to look elsewhere for inspiration to tackle the daunting challenge of mental health. By his own admission, the family and community in which he was raised were fertile grounds for the same.
His family had crossed the border into Uganda when he was barely 5 months, settling into present day Rakai district. But the Rakai of the 90s was a difficult place for a child to make their earliest memories: In 1990, Uganda’s first ever case of HIV/AIDs was reported in the district, setting off a decade of suffering and anguish for many of its residents. Taking advantage of the Rakai’s fishing and polygamous lifestyle, the novel virus spread like wildfire, killing people in droves and leaving untold heartache in its wake. With little awareness about the disease at the time, a young Kagaayi watched his panicked community resort to witchcraft, and, failing to find reprieve, waste away in alcoholism, provoking a spate of domestic violence and breakdown of families.
“It was a really difficult time. With no treatment at the time, people would suffer and gradually waste away, in agony, sometimes abandoned by their family who thought they had been bewitched. I lost close relatives myself, and even as a little boy at the time, those traumatic memories stayed with me,”
Neither did home offer much respite for Kagaayi. With 12 siblings from three mothers, life at home was dotted by routine sibling conflict over limited resources, domestic violence, and the family’s humble means meant that school fees for him and his siblings were not guaranteed. But rather than dissuade him, these experiences served to steel Kagaayi more. He persevered through school determinedly, becoming the first in his family and local community to complete the Ugandan school cycle, from Primary to University.
“My background challenged me to break the chain of destitution, resignation and underachievement in my community – I wanted to be a beacon of hope for the kids coming after me,” he says.
Even then, it wasn’t smooth sailing. In 2009, Kagaayi was admitted for Bachelor of Medicine and Surgery at Makerere University but would not be able to complete the program. The program was one of the most expensive, and considering the financial constraints at home, he struggled to raise tuition, and gradually descended into depression. which he could not talk about because of the prevailing stigma at the time.
“I was very depressed, yet I couldn’t open up to anyone because very few people appreciate depression as a serious health challenge. It is even worse when you’re a man, because our patriarchal society does not make room for you to be vulnerable,”
Eventually, Kaggayi abandoned Medicine and enrolled for a Bachelor of Arts in Social Sciences, which was a much “lighter” and a more affordable program. But his experience with depression left him determined to make it easier for future mental health victims like himself to find space to open up and get help.
Accordingly, in 2012, in his final year at university, Kagaayi started a social and emotional support group at Makerere, which he fittingly named; Let’s talk!
“We would empathetically listen to the patients to appreciate their triggers and counsel them. We would then follow them up to their families to train the family members on how to manage and relate to these patients to support their full recovery,” he says.
In 2017, the Befriender project ended, but Kagaayi had left an impression on the doctors at Mulago. Impressed with the Befriender Centre’s work, Mulago’s mental health unit wanted to continue following up their patients after clinical treatment, and they asked to work with Kagaayi on the initiative. Smelling an opportunity for more impact, Kagaayi run fast to start Twogele Centre for Mental Health, a community-based organisation (CBO) that would scale work around mental health, beyond suicide prevention.
“With Twogele, we were seeking to expand our support to include all mental health patients, including those suffering from bipolar disorder, anxiety, schizophrenia, depression, name it,” he says.
Under the new arrangement, Mulago’s mental health unit refers recovering mental health patients to Twogele, the latter organises them in peer groups to benefit from peer-to-peer support, after which it follows up with their families on how they can support the patients’ complete recovery. Twogele then proceeds to organise community barazas in the patients’ communities to raise awareness about mental health, using the recovered patients as ambassadors to assure the community that like any other diseases, mental health issues are preventable and curable. From the community, they then identify other patients whom they refer to Mulago for the preliminary clinical treatment, before repeating the cycle.
“Our complete cycle model is actively demystifying the stigma around mental health,”
Since 2017, Kagaayi says they have been able to support about 690 mental health patients referred to them by Mulago hospital. In turn, he says, Twogele has been able to identify over 100 patients through their community mental health barazas, whom they have referred to Mulago for initial clinical treatment.
To maintain this work, Kagaayi says Twogele has also trained 35 Village Health Teams (VHTs) from across Kampala and Wakiso districts on how to identify, support and refer, where necessary, people with mental health symptoms. “We have also identified and trained over 30 peer-support workers who support patients at our mental health clinic at Mulago. These also often support our community work as mental health ambassadors during Twogele’s mental health barazas,” he says.
Twogele’s efforts have not gone unrecognized. In February 2021, the CBO was awarded the Ember International Mental Health Award for their community mental health work. This year, in March, Kagaayi was appointed Principal Coordinator for the Movement for Global Mental Health (MGMH), an international initiative dedicated to improving mental health and well-being worldwide. He says Twogele’s goal is to decentralize mental health services, make them accessible and reduce stigma:
“Most mental health services are urban based. So as Twogele, we would like to see these services decentralised to at least every district to benefit more people who’re stuck at the grassroots without any form of support. That is what we’re trying to do in the communities. Our hope is that progressively, we shall be able to de-stigmatize mental health, and normalize its treatment as we do with physical health, he says.