Why is Nigeria leading the way on mental health and NTD integration and what can we learn from this?
An interview with three of TLM Nigeria's Team
Why is Nigeria leading the way on mental health and NTD integration and what can we learn from this?
TLM Nigeria has been working with other key actors to address a burgeoning mental health crisis in the country. Through this experience, they’re leading the way for much of the NTD and leprosy world.
Paul Tsaku, Jika Amah-Baruwa, and Demsy Audu sat with Tim Burton to discuss why this work has been unavoidable in Nigeria and what other NTD programmes could learn from their experience so far.
Dr Paul Tsaku
Jika Amah-Baruwa
Demsy Audu
TB: Why has Nigeria been leading the way on integrating mental health and NTD work?
PT: The first thing to acknowledge is that Nigeria has a huge NTD and mental health burden. The next thing to acknowledge is that according to a recent report, up to 60 million Nigerians are suffering from at least one form of mental illness and that 90 percent of Nigerians do not have access to mental health care. There is a huge unmet need and so we have had to step up.
JAB: Mental health problems have also been exacerbated by the conflicts that have scarred the country over the past decade. The pain of conflict has damaged the mental health of many Nigerians, particularly those caught up in the violence.
The humanitarian community jumped in to respond to the conflict, but has prioritised the things that they are most used to doing: WASH, nutrition, shelter, education. Mental health has been overlooked. There is pain, there is trauma, there are unspoken words in our communities.
On top of this, there is also a lot of disability that has been caused by the conflict. It is through our work with this community of persons with disability that the mental health challenges really came to our attention.
There are fewer than eight years before 2030 and the deadline for the Sustainable Development Goals. If we deprioritise mental health then we will not realise SDGs 3, 5, 10, 16, which are associated with good health and wellbeing, gender equality, reducing inequality, and peace, justice and inclusivity.
DA: It isn’t just the conflicts that have caused this pain. People in Nigeria love to congregate, to visit loved ones and family. Family means everything to a Nigerian, but conflict combined with Covid lockdowns have separated people from their families and their friends.
This is compounding the mental health challenges that people face. People are lonely, depressed, anxious, and afraid to go to places of worship.
We’ve come to understand that medically speaking, our leprosy, NTD, and disability interventions have been all about the physical; we have been neglecting mental health at a time when mental health problems have been growing. That is why we are placing such emphasis on mental health in the last few years.
TB: What sorts of mental health challenges are you seeing in the communities you support?
JAB: When you fall ill in some communities in Nigeria, it can be attributed to higher powers or a curse from angry ancestors. Being diagnosed with leprosy, another NTD, or a disability can bring a lot of pain and stigma because of these perceptions. Of course, this is going to have an impact on mental health.
Equally, if you grow up watching your parent struggling because of an impairment or facing discrimination because of leprosy stigma, this will have a big impact on you.
Perhaps the biggest problem we face is that people do not understand mental health very well and they have not been happy to talk about it in the past. In the past, people with mental health problems would be chained or tied up. Some people think that mental health diseases are communicable diseases. Within this context, few people have felt able to talk about their mental health challenges.
There is no mental health law in place in Nigeria other than the Regional Lunacy Law of 1958. The law in content and context violates the fundamental human rights of persons with mental health and psychosocial disabilities. It allows for people with mental health challenges to be imprisoned or even killed. It’s one of the things we’re looking to change; we’re advocating for a bill that approaches mental health clinically and in the right perspective, with the goal that one day people will arrive in a medical centre for mental health treatment and receive it in much the same way they would for a physical condition like malaria.
"In the past, people with mental health problems would be chained or tied up. Some people think that mental health diseases are communicable diseases."
PT: To give you an idea of the kinds of perception challenges we face in Nigeria, there is even a ridiculous piece of legislation that criminalises suicide. This law has been referred to as “a tragic response to a cry for help” in some quarters. In the legislation, if you attempt suicide, you will be criminalised and prosecuted, instead of receiving the help you need. Such discriminatory laws have become obsolete and there are efforts going on to review them.
DA: There are cross-cutting challenges that we are facing, too. We need to better understand the gender dimension of mental health. Even if you have a community that is open to talking about mental health, it is hard for women to find a voice as Nigerian communities are often very patriarchal. We’re starting to create women-only spaces in these communities so that women can speak among themselves about the mental health challenges they are facing, before bringing it to the wider community.
Poverty and inclusion also remain a really big cross-cutting issue. Leprosy, NTDs, and disability all negatively impact a person’s access to livelihoods. This impacts families and consequently mental health. During one of the engagements in the community, we met with a little boy who said he wished he wasn’t born into a family affected by leprosy.
TB: What interventions are you making in the area of mental health and NTDs?
JAB: One of our key interventions is the Open Minds project. Through this project we are working in three states [Sokoto, Kebbi and the Federal Capital Territory - Abuja] to improve the mental wellbeing and support systems for young people affected by NTDs and/or disability.
It’s a broad project that aims to bridge the gaps by strengthening mental health support for Children and Young People affected by NTDs in Nigeria.
We conducted a well-being assessment and screening exercise in these communities and asked people how they feel, how well they’re sleeping, how willing they are to engage in activities. This provided a baseline understanding of the challenges being faced.
Since the project started in 2020, we have been working with young people in the project communities who volunteered to be trained as peer counsellors. These peer counsellors have a positive influence on their communities, assisting around 10-15 peers by offering comfort, listening, helping people to make informed decisions, and making referrals to other services or professional support.
They are not professionals, so there is a limit to what they can do, but in a country with such a lack of mental health professionals, they are a vital support link for people who are struggling.
These counsellors receive support from a network of community first aiders who are supervised by local healthcare workers. Together, the counsellors and first aiders are able to provide crucial support, but also play a role as a referral pathway to tertiary centres.
These tertiary centres are also a crucial part of the Open Minds project. Cases that need extra care are linked to the tertiary centres where they can go to for extra support. If the distance between the person and the centre is too far, the first aiders can keep the centre up to date with the latest. Sometimes a mental health professional will come to the community at a pre-arranged time.
Given the misperceptions and myths around mental health in many Nigerian communities, we have also been working with teachers and educators to introduce school-based mental health programs school and to open up conversations around mental health.
Maryam is a peer-counsellor at The Leprosy Mission Nigeria's Open Minds project. During the last mental health screening exercise, Maryam was found to be showing signs of depression. She has been referred to a specialist and will visit the hospital.
She has found the peer educator training to be very helpful. It has helped her to reframe and adjust her attitude towards her challenges and has also affected the way she relates with her children. She now also talks to other young mothers in the community about life, marriage, and raising children.
PT: Another crucial intervention in this area is the Mind-Skin Link project. We’ve been working with civil society partners like CBM Global as well as the National Mental Health Programme, official bodies of mental health professionals in Nigeria, the government’s NTD Division and the WHO.
Together we have been talking to people in communities with lived experience of NTDs and identifying the challenges we still face in providing mental health care. This has led to the development of a toolkit and a series of recommendations for the Federal Government.
The recommendations are quite extensive. We want to see greater collaboration to prevent and manage mental, neurological and substance abuse disorders (MNS), an increase in stakeholder engagement in these areas, and mental health capacity building for NTD Programme Managers at the State and local level.
We recommend the establishment of a Mental Health Desk in the Public Health Departments of all 36 States. These desks will be responsible for changing the narrative around mental health by engaging media and the entertainment industries, as well as providing on-the-ground support to health teams. Lastly, we want to include mental health in all NTD planning and establish a mental health and NTDs technical working group.
All these proposals are with the government now and we’re waiting for them to be actioned.
TB: What have you learnt since you started this work?
JAB: This work is not one-size-fits-all. Even at the screening level – the very first step – we have had to modify our approach on a school-by-school basis. What we’ve learnt in one community doesn’t necessarily apply in another. We’ve had to learn what is peculiar about each community through focus groups and discussions with community members.
One time we arrived at a community and asked people to draw the first thing that came to their mind. Some people drew a football, or a house, or a tree. One man drew a plate of food. When we asked him why, he told us he just wished he could have access to one square meal. Asking this simple question opened up our understanding of the community and allowed us to address their actual needs, rather than assuming what they needed was anti-depressants.
Mental Health Literacy is also critical, especially as the media depiction of persons with mental illness is stigmatising. With training and capacity building, the skills of media experts could be harnessed to promote mental health literacy. We’ve learnt that mental health affects everything and is affected by everything. Just as we might integrate a gender component into our programmes, we must also integrate a mental health component into all of our programmes. It’s a cross-cutting issue.
TB: What success are you seeing?
JAB: We’ve seen some real successes. Young people are finding hope and choosing to access education again, after being turned away when they were younger. Many are looking for opportunities to train in new skills. All this comes from a much greater sense of self-worth that in turn comes with better mental health.
Talking about mental health in communities has also strengthened their capacity to manage community conflict. They have found ways to sit together and understand each other’s’ concerns. For the first time they can speak and share without feeling judged.
We hope this healthcare strengthening will spread across Nigeria and bring transformation to many more communities and lives. There’s still so much to do, but we’re seeing how it is possible.
How is TLM fine-tuning its strategic direction for the years to come?
Clara Volpi, TLM Head of Operations Support
How is TLM fine-tuning its strategic direction for the years to come?
Thoughts from our Head of Operations Support, Clara Volpi.
The Leprosy Mission started a new Global Strategy in 2019 that was due to run to 2023. When the strategy was written, we had little idea of the challenges that the world would face over the five-year course of the strategy.
Following the impact of Covid-19, war, and the growing influence of the climate crisis, we have made the decision to extend our strategy by a year (to 2024) and are in the process of completing a mid-term review.
In this article, we want to share what we have learnt following our review and some of the ways we plan to fine-tune our strategic direction. We are not at the stage of developing detailed plans yet, but we do have a very solid idea of what the last four years have meant and what the next two years – and beyond – should look like.
The challenges created by the last four years
The consequences of the pandemic, conflict, and the worsening climate crisis mean that we have good reason to fear rising global inequalities and significant obstacles to a world without leprosy.
Covid-19 and war in Ukraine have triggered economic crises in a number of countries. These crises make it harder to secure funding for leprosy control and ongoing care. These crises may also force more people into contexts with worsening nutrition, sanitation, hygiene, and accommodation. All of this will harm our efforts to achieve zero leprosy.
The climate crisis is also likely to have an influence on national economics and may encourage political turmoil. We are likely to see increasing pressure on limited planetary resources (such as minerals and water) fuelling conflicts. Ongoing crises may become the norm.
"The last four years, along with the escalating climate crisis, have thrown up serious roadblocks on our journey to a world without leprosy."
According to the 2022 Global Risks Report, by 2024, GDP growth in developing countries is likely to be 5.5 percent below expected, while advanced economies will be 1 percent above. This equates to an extra 51m people in extreme poverty.
Within this global context, we look to the funding horizon and see reduced commitment to development spending from the Global North and greater challenges accessing the resources we need to defeat leprosy.
The last four years, along with the escalating climate crisis, have thrown up serious roadblocks on our journey to a world without leprosy. However, as we wrote at the start of this year, we still believe it will be possible to end the transmission of this ancient, persistent disease by 2035. Here’s a look at how.
Concentrating investment in some key strategic priorities
Our Global Strategy 2019-2023 highlighted a number of priorities that remain central to our plans moving forward. Some, perhaps, have an increased importance for the years to come.
The Transmission Trident
The 2019-23 Strategy highlighted the importance of active case finding, contact tracing, and implementing PEP (a preventative antibiotic); a trident of tools that are essential to ending transmission.
As we have monitored these strategic approaches, we have seen the impact they can have when implemented effectively. Whatever the future may hold, these three elements will be central if we wish to end leprosy transmission. We plan to increase our investment in these areas.
Empowering our key enablers: research and advocacy
The 2019-23 Strategy sparked a renewed focus on the power of research to enable us to achieve zero leprosy. Since then, TLM has directed more funding towards leprosy and worked to raise awareness of the impact of research.
In the years to come we hope to see future-defining new tools become readily available. From improved and instant diagnostics to perfected PEP and a leprosy vaccine, the capacity of research to develop tools to end leprosy will be made evident in the coming years.
We are pleased that investment in research has grown since 2019, but we recognise that more resources have to be concentrated in this area of our work.
The same is true of advocacy. TLM’s presence at the United Nations has grown from nothing in 2018 to an established part of our annual cycle each year. Our challenge now is to build on this promising start.
Self-advocates attending an event at the UK Parliament
We aim to create stronger national and local advocacy networks, particularly through empowered organisations of persons affected by leprosy. By combining this local effort with our international advocacy at the United Nations and within the wider disability movement, we will encounter more opportunities to channel resources and political commitment towards defeating leprosy.
Strengthening national health systems – and our own
TLM will increasingly focus on strengthening national health systems to better support persons affected by leprosy. We have made a start on this through ongoing training for healthcare professionals and strong relationships with Ministries of Health and National Leprosy Control Programmes. In the years to come we will make this a bigger focus of our work – something that will require increased advocacy support.
Within this, we have to acknowledge that our own systems would benefit from strengthening. At the moment, we are not doing enough to monitor patients for signs of disability or monitor existing impairments. We strive towards zero disability and we recognise this will not be possible if we do not improve our monitoring.
The same is true of self-care. The self-care in which we train patients does not have high adherence levels. In recent years there has been much research in this area and we hope that the fruit from this research will mean new and future self-care guidelines will be much easier for patients to maintain.
Investing in local solutions
Through our monitoring of the 2019-23 Strategy, we have begun to recognise that our solutions are not local enough. This manifests itself in a number of ways.
Firstly, we do not have enough reliable local data. We receive data at the national-level, which allows us to plan our work at a national level, but does not help us understand the reality on a sub-national level. If we receive data at this level, we will be able to provide more effective technical support to governments and eliminate leprosy in the countries we work in.
Secondly, we recognise that we have to do more to bring innovative disability care to communities. Many of our patients do not live near our hospitals or clinics and travel is not always quick or straightforward.
In India, Myanmar, and Nigeria we have seen success with travelling clinics that go to communities, either in a bus or a truck. In Bangladesh and India, we have seen that tele-health provides patients with more immediate answers to their problems. In Myanmar, we have seen the impact of empowering churches to provide basic self-care and physiotherapy support.
Ongoing disability care will be more impactful if it is more local. This will be our direction of travel in the future.
Lastly, investing in local solutions means investing in local partners, which brings us to our next point.
Investing in our partnerships
At the local level, our partnerships start with organisations of persons affected by leprosy, but extend to our leprosy and NTD partners, churches, and local governments.
Organisations of persons affected by leprosy are demonstrating their potential by becoming key implementing partners and our most powerful advocates. The direction of travel for the future will undoubtedly see greater investment in these groups.
We also recognise the growing connectedness and power of the wider NTD sector. Recent years have seen this network go from strength to strength and the potential of the future lies in integrating NTD programmes, accessing funding in partnership, and greater collaboration at all levels. You can expect to see more of TLM within the NTD sector.
Lastly, TLM is going to move towards better activating our partnerships with churches and local government. In many of the endemic countries we work in, much local power lies within these organisations. Our goal is to better understand how we can access this potential and engage new partners who have something to contribute to the fight to defeat leprosy in their community.
The cross-cutting theme
Above are some – not all – of the ways in which we plan to fine-tune our strategy to meet the challenges ahead of us. Surrounding all of this is a key recommendation from our mid-term review: be more agile to cope with an uncertain world.
Organisational agility is not an easy thing to achieve, but we are aware that, in order to better respond to the uncertainties ahead, we will have to consider a few key steps:
We will continue to invest in training and preparing our leaders, we will grow our access to income, we will increase the breadth and depth of digital skills in the organisation, and we will integrate our approaches, rather than having disciplines that work in silos.
The challenges ahead of us are not small, but nor are the ones behind us, the ones we have already come through. We feel equipped and inspired by fresh perspectives and a focus on the areas of work that will have the most impact. Zero leprosy by 2035 remains our goal.
