NTDs and Mental Health

19 Oct 2020

Emergence of mental health as a theme in the NTD field – from aspiration to impact

Wlubnesh Fentaye Adane, 50, leaves the health post with CBM-supported health extension worker Asefu Ayalew in Faya, Amhara Region, Ethiopia. CBM/Hayduk

World Mental Health Day this year was marked by the launch of the new WHO Mental Health and NTDs Guide, and here we take the opportunity to reflect on the progress in mental health, wellbeing and stigma as an area of work within NTDs, which has led to this important milestone.

The emotional component of what are now called Neglected Tropical Diseases (NTDs) has of course always been an important part of the experience of people affected by them, and of those who care for them. This set of diseases often have particularly high levels of disability, which with chronic symptoms like pain or itch, are risk factors for depression and other mental illnesses. In addition, stigma and social exclusion are common across all societies, especially for infectious and disfiguring conditions, which tend to reinforce mental distress and illness. It is surprising then, that although at a local level, clinicians and carers have always tried to respond to people’s holistic needs, this is not reflected in formal training, or health and social care systems. The emergence of the global discipline of NTDs was largely framed around the elimination agenda – an understandable focus, and motivating for funders and implementers, but one that has tended to neglect a more holistic and inclusive approach.

Berthine (64) is blind due to onchocerciasis, with her grandchildren. DRC. CBM/Tobias Pflanz

In the past 10 years, the good work that has been done through a more person-centred approach in services around the world has started to receive more attention at an international level. There has also been a growth of research and evidence that provides clear guidance on how to do this better. The small amount of literature pointing out the high level of comorbidity of NTDs with mental health conditions (mainly in leprosy) was collated in some helpful reviews in the early 2010s1. They were also accompanied by small side-meetings at conferences like the NTD NGO Network (starting in Brighton in 2013), COR-NTD and RSTMH. This has now become a standard stream in such meetings, often driven by the NGO community, with a dedicated set of interested researchers, and a welcome participation of people affected themselves. In the last 5 years, we have seen a substantial growth in better quality studies using a variety of methodologies, with greater availability of funding and, the first large-scale studies have now also started.

These studies have demonstrated unequivocally the very high burden of mental health conditions associated with many NTDs, and started to explore in more detail the mechanisms underlying causation and possible solutions2. Such evidence has also led to a number of key learnings. For example, if NTD-linked depression is considered alongside physical disability, the burden of diseases like LF and cutaneous leishmaniasis is substantially increased – something that should be considered in global estimates of disease burden.3 There remain many gaps in our knowledge, but it is encouraging to see development of good intervention models, including in stigma, and evaluation of practical implementation in the field. Early work has led to a greater understanding of how attention to mental health can support a comprehensive approach to elimination as well as holistic care for people affected at national level.

From recognition to integrated frameworks

Misganaw Worku, 15, a student leader in the CBM-supported anti-trachoma club at Double Mariam Primary School, washes his face in Double Mariam, Amhara Region, Ethiopia. CBM/Hayduk

The draft WHO NTD Roadmap 2030 is a landmark document given its inclusion of concrete recommendations for national programmes and international actors to ensure attention is paid to disability, morbidity management, mental wellbeing and social inclusion. It is therefore well aligned to the Sustainable Development Goals, which themselves had a far greater recognition of mental health (for example as part of Universal Health Coverage), than the Millennium Development Goals that preceded them. More broadly, this mirrors the substantial increase in interest in mental health as a global public health field, and in national-level mental health services development, from which the NTD field can learn. This should provide them with a substantial head-start in this work, with much of the focus being in the same neglected, low-resourced settings where NTDs are endemic.

Successes in integrating mental health and NTDs

Wlubnesh Fentaye Adane, 50, who has trichiasis-stage trachoma in her left eye, at her sister's home in Faya, Amhara Region, Ethiopia. CBM/Hayduk

During development of the WHO dossier for validation of elimination of lymphatic filariasis as a public health problem, provision of mental and physical health care was included as part of the range of available services that should be in place. This is an important recognition of the fact that simply interrupting transmission is not sufficient, but that national programmes have responsibilities for a more comprehensive provision of care.

Participation of people affected by NTDs is an important principle as we move to a more comprehensive and holistic approach. In the case of mental health and wellbeing in particular, it is also a key means of reducing stigma and changing attitudes at all levels. The participation of people affected by NTDs in a wide range of platforms has become far more common in recent years, including in research conferences and in programme development. There is more to do, but we have seen this impact positively on setting of research priorities2, and development and evaluation of interventions, as well as enriching the perspectives of the wide range of actors who work in this field.

From policy to practice

Inguach Mesele Bisetegn has trichiasis stage trachoma but is afraid to get free surgery in Gazgibla, Amhara Region, Ethiopia. CBM Hayduk

Ultimately though, it is practical access to care that will have a real impact on people’s lives. In the broader field of Global Mental Health, it was the widespread availability of practical guidelines for providing good quality care in low income settings that prompted the transformational change from good intentions and evidence in principle, to substantial uptake and implementation in the field. After several years of charting a path in this direction, for World Mental Health Day (10 October), WHO published an important practical guide; Mental health of people with NTDs - Towards a person-centred approach, written collaboratively with a range of experts, including the Mental Wellbeing and Stigma Group of the NTD NGO Network. This document summarises links between these areas, and points towards the resources available to guide local planning and provision of services and support. Our hope is that, along with a growing community of experts in this field, this will increase momentum and investment in mental health as a key component of NTD programming, so that we can better realise the aspiration of not only reducing the prevalence of these conditions, but also improve the quality of life and social inclusion of people affected.

NTDs Ending NTDs: together towards 2030