Theme 4: Lessons Learned and Recommendations
Reintegration is now the best practice
“It is fundamental to note that the settlements are no longer in existence. It’s now best practice that persons affected are integrated back into the community so that they can live among their family members ” – Staff of DAHW
“Treatment has been good but rehabilitation has not been good, it’s difficult for people that have been healed to get back into society. The state of the settlements has been bad and our children need education or vocational training also” - PLWL Edo State
Advocacy and Human rights efforts should be improved.
”Promoting and protecting the rights of persons affected with leprosy by public education which can be done by the stakeholders in the media” - PLWL Edo state
Leprosy has become neglected even among neglected diseases.
”I will say it’s a situation of neglect, not just because the government decides to neglect it because it’s still neglected even among other neglected tropical diseases. It’s neglected probably because the government is overwhelmed, there are lots of competing demands in the health budget like COVID-19, Tuberculosis. The leprosy control programmes have been joined with the tuberculosis control programme but attention is given more to TB because of how infectious it is. Nigeria achieved the elimination target of WHO years ago but we’re seeing a resurgence of leprosy. The current security issue in the country is also making control more difficult because health workers have to go into the communities to find infected persons and they are not able to go because of the security risk so we have a possibility of a resurgence.” - Head of Programs, TLMN
Need for government commitment and support
“We the NGOs are just here to support, the leprosy control programme is the government’s. We demand increased commitment from the state government such that the only form of funding available will not be from the NGOs. The funding for case search from the NGOs to curb ongoing transmission is prohibited and limited hence the need for government intervention. Over the last 12 years, it has always been what the NGOs bring to the table. The government needs to show more commitment backed up with cash and understand that Leprosy is still a major public health problem.” - Head of Programs, TLMN
”Government should improve funding for the colony.” - PLWL Zamfara.
Summary of findings: This study provides an overview of the socio-demographic characteristics of study participants, knowledge and perception of leprosy, and the description of health services in leprosy settlements in Nigeria. Majority of the participants are male and a considerable proportion have no formal education. Additionally, the findings underscore a lack of comprehensive understanding of leprosy, with a substantial percentage of respondents unaware of its cause and transmission, though a majority recognize its symptoms and associated social challenges. Majority of respondents have access to healthcare, but some report delays in seeking professional help for skin conditions.
The qualitative data provide a deeper perspective on the challenges faced by people living with leprosy, the roles of various organizations, and the lessons learned. The experiences shared by respondents reveal a lack of consistent government funding for individuals affected by leprosy, leading to dependence on non-governmental organizations and philanthropic support. The inadequate living conditions and lack of basic amenities in leprosy settlements further contribute to the challenges faced by PLWL. The crucial role of supporting organizations is highlighted through themes such as welfare enhancement, research, media advocacy, and service delivery. However, these efforts, while valuable, cannot replace sustained government commitment and financial support.