By Dr Laura Dean, Reader and Research Group Leader for Mental Health, Inclusion, NTDs and Disability (MIND).
Neglected Tropical Diseases (NTDs) pose a unique challenge due to their complex interaction with gender dynamics, stigma, physical morbidity, and their collective impact on mental health outcomes within the communities they impact.
For the past 10 years, I have worked with colleagues at Liverpool School of Tropical Medicine (LSTM) and beyond to address the mental health challenges associated with skin neglected tropical diseases (NTDs), including through our partnership with the Liberian Ministry of Health and the REDRESS programme.
Throughout our research, we have taken a person-centred approach to strengthening health systems, identifying that this is the best way to treat NTDs and address their impact on mental health, and ensuring that health professionals work collaboratively with persons affected and their communities.
Key to creating these person-centred health responses are the World Health Organisation’s (WHO) five strategic directions for shaping the development of integrated person-centred health systems: empowering and engaging people, strengthening governance and accountability, reorienting models of care, co-ordinating services and creating an enabling environment.
The central pillar to transforming health systems worldwide is recognising that individuals with lived experience of NTDs, such as Emmanuel Zaizay, community engagement lead within the REDRESS programme and a person affected by a Buruli ulcer, can provide invaluable insights for health practitioners. They can illuminate the complex causes of morbidity and disability and the stigmatising experiences that so often negatively impact the mental health of those affected.
Examples of solutions to these challenges include social support networks for people affected by NTDs which are already expanding worldwide, but there is much more to be done. As a scientist, I’m keen to see people with NTDs included in the production of scientific knowledge, defining future research and NTD programme priorities, and helping to shape the global health policies that directly impact their wellbeing.
Throughout my research, I have also seen the enormous positive effects that good governance can have, ensuring the inclusion of all voices in transparent decision-making and the creation of equitable partnerships.
Well-governed, person-centred health systems can effectively combine the distinct strategies and priorities of varying agencies and programmes while ensuring checks and balances between government actors, civil society organisations and community members.
This, in turn, aids decision-making and resource allocation, often driven by the availability of data on the burden of physical and mental health conditions. Generating a greater volume of reliable data surrounding mental health and NTDs is vital for further progress in integrating physical and mental health into a single, person-centred response.
Accountability is also essential in ensuring that person-centred systems work sustainably. Participatory action-based learning, which includes and empowers local actors, can be a valuable tool for encouraging accountability.
After establishing a well-governed system that engages with persons affected by NTDs, it is necessary to change care models to be more holistic, taking account of both physical and mental health, while prioritising community-level interventions. Research by my colleagues has highlighted the benefit of a life–course approach that pays attention to the positive mental wellbeing of people affected by NTDs.
This may involve supporting the person affected in managing their condition, alongside the provision of psychosocial support and long-term follow-up with regular monitoring. It is also essential to understand the role of social and structural gaps that shape illness experiences and use these to develop culturally sensitive support for the person affected.
The next step to creating a person-centred health system is to decentralise mental health services; engaging affected people and their families is critical to expanding long-term engagement and psychosocial support for those with NTDs. Training peer supporters in the use of a basic package of psychosocial support for people affected by NTDs is a valuable tool that improves access to basic mental health support and supports the reduction of stigma whilst contributing to the development of person-centred responses.
The final pillar of transforming health care is creating an enabling environment. Justice and a focus on people, not diseases, are key reasons cited for the increased prioritisation of person-centred care for NTDs. This has been highlighted in recent global policy shifts, including the launch of WHO’s NTD Roadmap 2021 - 2030 and its guidance document on supporting the mental health of people with NTDs.
These policy shifts have created an enabling environment for the integration of mental health into NTD care. This, in turn, has encouraged positive, collective action between donors, NGOs, the government, and community health workers working towards integrating a person-centred approach.
We have made significant progress in ensuring the mental wellbeing of people affected by NTDs is recognised globally. However, we still have far to go in ensuring this critical area is considered in relation to all NTDs, including snakebite, and in health systems responses to ensure no one is left behind.
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The research this article is based on can be found in a special International Health supplement by Royal Society of Tropical Medicine and Hygiene (RSTMH) focused on Mental Health, Stigma and NTDs.
It is co-edited by Dr Laura Dean and Dr Julian Eaton from London School of Hygiene and Tropical Medicine (LSTHM) and features papers from LSTM researchers and affiliates such as Carrie Barrett, Motto Nganda, Maaike Seekles and David Molyneux.
The supplement is entirely open access and can be found on the OUP Medicine website.