|Year : 2020 | Volume
| Issue : 3 | Page : 189-195
Advocacy: How to Create Political will for Mental Health and Epilepsy in Low- and Middle-income Countries?
Farid Boumediene1, Pierre-Emile Bruand2, Jaime Luna1, Marion Vergonjeanne1, Antoine Gbessemehlan1, Katie Dain3, Tiphaine Lagarde4, Sylvie Sargueil5, Amadou Gallo Diop6, Amy Fall Ndao2, Rachid Bennegadi7, Driss Moussaoui8, Pierre-Marie Preux1
1 INSERM, Univ. Limoges, CHU Limoges, IRD, U1094 Tropical Neuroepidemiology, Institute of Epidemiology and Tropical Neurology, GEIST, Limoges, France
2 Global Health Programs, Sanofi, Gentilly, France
3 NCD Alliance, London, UK
4 NCD Alliance, Geneva, Switzerland
5 Paris, France
6 Neurology Department, Fann University Hospital, Dakar, Senegal
7 Sigmund Freud University, Paris, France
8 Casablanca, Morocco
|Date of Submission||03-Jul-2020|
|Date of Decision||06-Sep-2020|
|Date of Acceptance||08-Sep-2020|
|Date of Web Publication||24-Dec-2020|
Dr. Farid Boumediene
Institut d'Epidémiologie et de Neurologie Tropicale, 2, rue du dr Marcland, 87025 Limoges Cedex
Source of Support: None, Conflict of Interest: None
Although psychiatric and neurological disorders are among the first contributors to the global burden of disease, they remain among the most neglected topics of Global Health. There is a real need to raise their profile, to improve advocacy so that the impact of these diseases is better understood, and greater political efforts are made to improve access to health care for mental disorders and epilepsy. This is the reason why in September 2019, the Interactive Meetings Promoting Access to Care and Treatment (IMPACT) Forum co-organized by the Institute of Epidemiology and Tropical Neurology UMR 1094 Inserm, the World Association of Social Psychiatry (WASP), and Sanofi Global Health was focused on “Advocacy: how to create political will for mental health and epilepsy in low- and middle-income countries?” This forum involved 40 people from 20 countries (from Africa, Asia, Latin America, but also from Europe), from various backgrounds (public, private, associative, and academic sectors), all committed to developing access to care for people living with mental disorders or epilepsy in low- and middle-income countries. The 2-day meeting combining plenary didactic sessions and group workshops provided participants with an opportunity to get a better understanding of advocacy, of its importance to drive policy and societal changes, and encouraged them to develop local advocacy plans. A survey conducted at the start of the IMPACT Forum, to evaluate the baseline understanding and attitudes toward advocacy, and repeated at the end, showed improvements in the overall score, as well as in every single item.
Keywords: Advocacy, civil society organizations, epilepsy, low- and middle-income countries, mental health, noncommunicable diseases
|How to cite this article:|
Boumediene F, Bruand PE, Luna J, Vergonjeanne M, Gbessemehlan A, Dain K, Lagarde T, Sargueil S, Diop AG, Ndao AF, Bennegadi R, Moussaoui D, Preux PM. Advocacy: How to Create Political will for Mental Health and Epilepsy in Low- and Middle-income Countries?. World Soc Psychiatry 2020;2:189-95
|How to cite this URL:|
Boumediene F, Bruand PE, Luna J, Vergonjeanne M, Gbessemehlan A, Dain K, Lagarde T, Sargueil S, Diop AG, Ndao AF, Bennegadi R, Moussaoui D, Preux PM. Advocacy: How to Create Political will for Mental Health and Epilepsy in Low- and Middle-income Countries?. World Soc Psychiatry [serial online] 2020 [cited 2021 May 7];2:189-95. Available from: https://www.worldsocpsychiatry.org/text.asp?2020/2/3/189/304813
| The Interactive Meetings Promoting Access to Care and Treatment Forum: Background, Structure, and Objectives for the 2019 Edition|| |
As discussed in a previous article, the World Association of Social Psychiatry (WASP), the Institute of Epidemiology and Tropical Neurology (IENT, UMR 1094 Inserm) joined forces with Sanofi Global Health in 2008 to promote access to health care for patients with mental disorders or epilepsy in developing countries. Through the Fight Against STigma program and other projects, initiatives have been launched in over 20 countries in Africa, Asia, South America, and Eurasia.,,,,,,,,, Developed with local health authorities, local experts and health professionals, patient associations, or nongovernmental organizations (NGOs), these programs aim to improve access to care for patients with mental disorders or epilepsy in low- and middle-income countries (LMICs). They are based on training health workers, raising public awareness, and educating patients and their families. Thanks to these initiatives, it is estimated that over 10,600 health-care workers have been trained, over 3.18 million people have been reached through awareness and educational activities, and over 132,000 people with mental illness or epilepsy have been diagnosed and/or treated.
Over the last 9 years, the IENT, WASP, and Sanofi Global Health have co-organized the Interactive Meetings Promoting Access to Care and Treatment (IMPACT) Forum. This forum convenes on an annual basis, a group of approximately 40 people from about 20 countries (from Africa, Asia, Latin America, but also from Europe), and from various backgrounds (public, private, associative, and academic sectors), who are all involved in developing access to care for people living with mental disorders or epilepsy in LMICs. Participants are local project owners, representatives from ministries of health, local psychiatrists, neurologists or general practitioners, international experts, researchers, etc.
Through a mix of didactic sessions, updates on various projects and workshops, the aim of the IMPACT Forum is to share outcomes and key learnings from the various initiatives that are implemented in a number of countries to develop access to care. This forum is also designed to stimulate debates and discussion, to develop capacity, and ultimately to help improve access to mental health and epilepsy care in LMICs.
As mental disorders and epilepsy remain among the most neglected topics of Global Health, there is a real need to raise their profile, to improve advocacy so that the impact of these diseases is better understood, and greater political efforts are made to improve access to health care for mental disorders and epilepsy. It was, therefore, decided that the focus of the IMPACT Forum held in Versailles, France, on September 12 and 13, 2019, would be “Advocacy: How to create political will for mental health and epilepsy in low- and middle-income countries?”
Forty participants from 20 countries [Figure 1] attended the meeting. The group included psychiatrists, neurologists, and physicians directly managing people with mental disorders or epilepsy in LMICs; epidemiologists; researchers; representatives from ministries of public health; representatives of NGOs; and representatives from the NCD Alliance (NCDA) an international NGO which mission is to unite and strengthen civil society to stimulate collaborative advocacy, action, and accountability for noncommunicable disease (NCD) prevention and control; it also included a physician, who is also a journalist involved in public health program evaluation and health journalism training, as well as representatives from Sanofi Global Health programs who are developing initiatives to improve access to health care for people with mental disorders or epilepsy in LMICs.
This forum aimed to provide participants with basic principles regarding advocacy, some examples, and tools and to encourage them to develop local advocacy plans.
The core of the 2-day meeting was articulated around three main topics, advocacy campaigning, enhancing the role of civil society, and working with the media, which were the focus of plenary sessions and of three different 1h30 group workshops, which all the participants completed. The following paragraphs are a summary of these presentations and workshops.
| Introduction to Advocacy Campaigning in the Context of Noncommunicable Diseases and the Sustainable Development Goals|| |
What is advocacy and why is it important for mental health, epilepsy, and other noncommunicable diseases?
Mental health and other neurological disorders such as epilepsy have long been overlooked when NCDs are discussed, or they have been seen as being separate. However, synergies across all NCDs mean it makes sense for governments to address common risk factors and system barriers to reduce premature and preventable suffering and death. In alignment with target 3.4 of the Sustainable Development Goals (SDGs), “by 2030, reduce by one third premature mortality from non-communicable diseases through prevention and treatment and promote mental health and well-being,“ mental health and epilepsy must be integrated into the response to NCDs.
Five years ahead of the 2025 global NCD targets and 10 years ahead of the SDG deadline of 2030, international commitments have not translated into local action, and the vast majority of countries are off-track to meet these targets.
In this context, advocacy can play a key role to mobilize countries to step up and implement the commitments adopted at the three UN High-Level Meetings on NCDs in 2011, 2014, and 2018 through a whole-of-society approach.
Advocacy is a dynamic process that aims to achieve system change. In the context of NCDs, it seeks to increase societal participation in decision-making and educate policymakers to create supportive policy and legal environments to prevent and control NCDs.
Conducting effective advocacy campaigns for noncommunicable diseases: Key steps
NCDA has demonstrated the value of working across diseases and risk factors for a common cause. What was a fragmented community has become a unified network of 2000 civil society organizations from across the diverse NCD community, spanning 170 countries.
There are many opportunities for the NCD community to respond collectively to common challenges and leverage joint solutions through well-articulated strategic advocacy campaigns, for which a series of key steps are detailed below.
STEP 1: Advocacy situational analysis
Developing a comprehensive situational analysis involves the following:
- Reviewing the existing evidence to make the case for prioritizing the adoption of cross-sectoral NCD policies, with questions to consider such as what is the available evidence about my subject? Is it conclusive? Is there any regional or local evidence that supports my interests? Are there any recommendations about it?
- Conducting a policy and legal analysis: to review existing mental health/epilepsy-related policies, laws, legislation, and regulation, for example, are there any mental health/epilepsy-related policies in my country? What are the scope and limitations of existing mental health/epilepsy-related policies, laws, legislation, and regulation? Is the government planning to change, or proposing to change these policies?
- Assessing upcoming opportunities for policy development (opportunity windows) such as election periods, national or international conferences regarding mental health or epilepsy, relevant health, or global initiatives such as the special initiative for mental health (2019–2023) regarding Universal Health Coverage for Mental Health
- Conducting a stakeholder analysis to identify the key players, their power, influence, and interest in mental health and epilepsy, for example, what are their profile and main activities/area of work? Can we identify their strengths and weaknesses? Could they become part of our advocacy work? It is particularly important to understand what's already happening so as to not duplicate or dilute efforts.
STEP 2: Selecting priority issues, goals and objectives
Priority issues upon which the advocacy campaign will be based need to be selected to underpin the organization's long-term vision for change on mental health/epilepsy. These objectives will need to be Specific (clearly stating what the organization wants to accomplish), Measurable (ensuring that progress is tracked and regularly monitored), Achievable (taking into account the organization's power to accomplish it), Realistic (considering how possible it is to accomplish it), and Time-bound (setting a timeframe to meet it) (SMART).
STEP 3: Political mapping
It is essential to have a thorough understanding of the existing decision-making processes and legal/legislative decisions in order to identify allies, champions, and opponents [Figure 2] and assess opportunities for partnership and collaborations with other sectors and stakeholders.
The information gained will help shape and/or select adequate tactics, develop, and/or modify effective advocacy messages to influence decision-making.
The primary targets will be the decision-makers with direct authority to influence the outcome of our advocacy campaign. These individuals are responsible for approving policy and legal changes or for allocating resources. The secondary targets include individuals or groups that influence the primary targets (key decision-makers).
STEP 4: Advocacy tactics and messages
Defining the right tactics underpinning the advocacy campaign is key and can involve simple tactics such as sending letters to government representatives, meeting with decision-makers, preparing briefings regarding the impact of mental disorders and epilepsy, and the effective approaches that exist.
To be impactful, key messages have to be short, simple, and built upon “elevator pitches” that explain the issues, their negative impact, and the solution, for example, “…for every US$1 invested in scaling up actions to address NCDs in low-and lower-middle-income countries (LLMICs), there will be a return to society of at least US$7 in increased employment, productivity and longer life.”
STEP 5: Framing the issue
Different advocacy messages should be tailored to different audiences. Advocacy messages and campaigns should always be evidence-based, using robust data and research. The scale of the burden, from a mortality and morbidity point of view, can be impactful. When combined with compelling real-life stories and case studies, data will come to life. Human stories, real-life stories of people affected by mental disorders or epilepsy, have the power to turn abstract facts and figures into compelling arguments for action. It is important to focus on what works – moving from “we have a problem” to “we have cost-effective solutions.” It is also key to position NCDs, mental health, epilepsy as a development and poverty issue, but also as a human rights and social justice issue, a security issue, and to highlight that it is an investment imperative, rather than a cost.
To effectively reach the “minds, hearts and pockets” of decision-makers, the arguments should build on:
- An epidemiologist who would bring the scientific evidence, the hard data regarding the public health issue, talking to the “minds” of decision-makers
- A patient representative, or a member of a family association, who would make a compelling case of the impact of the disease and would be best placed to reach the “hearts” of policymakers
- An economist who would tackle the financial aspect of the disease, and how investing in interventions would actually produce a significant return on investment, by reducing the direct and indirect costs of the disease, therefore, addressing the “pocket” issue.
STEP 6: Building support among key constituencies and coalitions
Building strong partnerships, which include a broad range of actors and constituencies, will help increase the legitimacy and effectiveness of an advocacy campaign. The more consensus around a particular area/ask, the stronger the ask becomes. Locally, we may find it effective to join forces with colleagues from other NCD organizations. Working through existing national/regional NCDAs is a very effective way to collaborate. If a local NCDA is not in place, reaching out to other organizations focused on specific diseases or risk factors is equally effective.
Engaging the media is also key. Building strong relationships with journalists are important avenues to raising awareness, educating the public, demanding attention from decision-makers, and influencing your target audiences to take action on mental disorders and epilepsy.
STEP 7: Mobilize and act
Based on the tactics that have been selected, a set of actions and activities designed to influence a specific group will be implemented. There is a breadth of activities to choose from: in-person meetings and events, direct communications, marches, policy briefs and evidence generation, shadow reporting, etc.
It is critical to maintain ongoing conversations with governments, to keep pushing NCDs (including mental disorders and epilepsy) and health asks, to be considered as a trusted technical resource on these issues. This consistent messaging and pressure can position NCDs positively with your government and make advocacy easier.
STEP 8: Monitoring and evaluation
It is important to incorporate monitoring and evaluation into advocacy planning right from the beginning, so that progress can be tracked to assess impact and ensure accountability.
| Mobilizing Communities and Enhancing the Role of Civil Society|| |
During this workshop, the definition of “civil society” was first discussed. For many participants, “civil society” was made of groups of individuals, structured and organized around a common purpose or mission. Independence from the government was also thought to be a key characteristic of civil society organizations (CSOs). It was highlighted that CSOs were the initiatives of individual citizens who had decided to take an active role to tackle some of our societies' issues.
Three official definitions were presented. For the World Bank, “civil society (…) refers to a wide array of organizations: community groups, NGOs, labor unions, indigenous groups, charitable organizations, faith-based organizations, professional associations, and foundations.” For the United Nations, “Civil society is the 'third sector' of society, along with government and business. It comprises civil society organizations and non-governmental organizations.” For the WHO: “The term 'civil society organization' is used to describe a non-state (independent from government) organization, association, or group that aims to advance a common interest.”
Through a quick scan of local CSOs for mental health or epilepsy in the various LMICs represented at the meeting, it appeared that there were already some forms of such organizations in most countries. Although it was not always clear what their membership or focus was, whether they were still active, or what their key achievements had been, there seemed to be organizations in place which were working on improving the situation of mental health or epilepsy in these countries. In many cases, these were learned societies or professional associations for health-care workers. In some cases, these associations had branched out to include an arm for patients, their families, and the general public.
The topline results of a survey conducted in 53 countries with key civil society stakeholders (patients, family members, and mental health professionals) to establish priorities for mental health services were discussed. These were based on the responses from 96 CSOs, including 43 (45%) from LMICs. Out of these, 62% represented service users, 51% family members, 52% mental health professionals, and 24% groups of mental health organizations. Along the highest-ranked general priorities were: (1) “a national mental health policy or strategy,” (2) “promoting campaigns to eliminate stigma and discrimination,” (3) “strengthening and enabling psychosocial treatments aimed at recovery and where appropriate, return to work,” and (4) “facilitating the move from mental health hospital to community care.”
Similarly, a report prepared for the 2013 World Innovation Summit by collecting feedback from 16 mental health NGOs from low-, middle-, and high-income countries was referred to. In that report, the main issues and challenges faced by mental health NGOs were: human rights violations, discrimination and stigma, and limited resources. With regard to their role in developing mental health policy and achieving change, their key activities were focused around: delivering help and services (e.g., psychosocial support and peer support groups); improving information sharing, awareness raising, and education (e.g., training of frontline workers such as public health clinic workers and police force); strengthening consumer groups and advocacy (e.g., involving users in developing mental health policies, training users on their rights, and creating Facebook groups); and working in partnership (with organizations sharing similar mission and goals).
The case of the Senegalese League Against Epilepsy was presented and discussed. This association was founded in 1997. It is an apolitical organization which volunteers include people with epilepsy and their families, health-care professionals, influential personalities from politics, from sports, the arts, communication, university, health, etc., as well as representatives from the Dakar Traditional Healers Association.
This well-structured association, organized around a Bureau with a President, Vice President, Secretary-General, and a Treasurer who have been elected, is governed by democratic processes and has transparent financial practices which are regularly audited.
There are two main commissions: one on care, research, and training for health-care professionals, and another one on social and educational matters for people with epilepsy, their families, and the general public.
The main activities have been centered around training (for health-care and social workers as well as primary teachers), research (PhD students), Information-Education-Communication (with radio announcements, TV programs, print media, conferences, etc.), ongoing care and new consultations, “Caravans for Epilepsy” initiative to bring care to people in rural areas, and protecting patients against charlatans.
The main outcomes have been a very significant increase of epilepsy awareness in Senegal. In terms of reasons for consulting, epilepsy has gone from 7th to 2nd position in 30 years at the Department of Neurology (the only in the country), located at Fann University Hospital. People with epilepsy do not seem to “hide” as much as before. Another positive result has been the fruitful collaboration which has been initiated with a few traditional healers. It was highlighted that now there was also a focal point for epilepsy within the “ mental health “ unit of NCDs at the Ministry of Health.
Participants were invited to refer to the WHO guide entitled “Setting up and operating a civil society organization in mental health and related areas.”
In particular, it was suggested to use the following key questions to initiate the process and set up a CSO.
- What are the unmet needs/the priorities in terms of mental health/epilepsy in my country?
- What would be the objectives of a CSO – short term/long term?
- How are we going to do it?
- With which stakeholders/members?
- With which means?
- How are we going to monitor and evaluate the outcomes of our actions?
Another key point which was raised was the need to build coalitions with other NCD CSOs. It is important not to erect siloes for diseases but rather to join forces across NCDs and focus on health solutions to address NCD multimorbidities. To this point, synergizing with local NCDA affiliates would be a must.
| Working with Journalists: How to Foster Political will for Mental Health and Epilepsy Through the Media|| |
It is about creating a favorable ground to inform and educate decision-makers and the population about mental and neurological diseases. These are generally very poorly understood and are associated with many traditional beliefs and prejudices ranging from “depression doesn't really exist in our country, it only affects white people” to “epilepsy or schizophrenia is due to a curse, to witchcraft.”
One should always keep in mind that a journalist, through its reach, can actually save more lives than a doctor, and at the same time, they can also do more harm.
Although many participants relayed examples of problems they had encountered with the media, especially with journalists publishing misleading information driven by a sensationalist approach, there was a consensus that, in public health in particular, the media are a key stakeholder which we cannot ignore.
It is, therefore, essential to consider journalists as partners and to engage in a true collaboration with them, as early as possible. There is often a huge gap between health-care professionals, NGOs, and journalists, a gap that can be bridged.
It is important to identify reliable contacts within the media, journalists who have an interest in health topics and to establish a long-term relationship with them, based on trust, informing them early on of newsworthy topics, facilitating their access to health-care professionals, experts, etc., and also letting them know when they “get it wrong” and when they are spreading misleading information.
Journalists are selling stories. They are driven by commercial objectives: to sell their newspapers and to get top ratings for their radio or TV program. They need newsworthy topics and compelling narratives. We need, therefore, to provide them with epidemiological data and scientific evidence that can be easily translated into simple and impactful facts but also to bring strong testimonials from patients or families to illustrate the impact of these diseases. No scientific or technical terms shall be used: the language must be understood by everyone.
It is crucial to choose the right media according to the target we are aiming for: for instance, major national media will be ideal for decision-makers, when community media in local languages will be better for the most vulnerable groups. It is also worth mentioning the increasingly strong involvement of community radio stations: they give a voice to patients and they help improve knowledge and change perception. It was mentioned that in Mali and in Bolivia, local community radio stations had been very helpful to raise awareness.
We must consider the national and political agenda before planning any health awareness campaign. For instance, there is no point in organizing a media event or some health training at the time of elections.
| Results of a Survey to Assess Changes in Perceptions and Attitudes|| |
An online survey, in both English and French, was conducted right at the start of the forum to evaluate the baseline perceptions and attitudes of the participants toward advocacy and related items. The same questionnaire was repeated at the end of the IMPACT Forum to assess any changes.
Thirty-two out of the 40 IMPACT Forum participants (80.0%) completed the online survey on their laptop computer, tablet, or smartphone at the start of the forum, and 25 (62.5%) completed it at the end of the forum. Twenty-three questionnaires could be paired for analysis comparing before and after scores using the Wilcoxon signed-rank test.
When asked at baseline about their level of knowledge and familiarity with advocacy, 16 participants (50%) indicated that they had had some experience with it, although 8 (25%) knew nothing or very little about it [Figure 3].
|Figure 3: Baseline level of knowledge and familiarity regarding advocacy|
Click here to view
To evaluate participants' level of comfort or confidence regarding advocacy and related items, a series of 6 questions, each scored from 1 to 5, were asked. Overall, the total score improved from 18.5 Interquartile range (IQR) (13.2–22.7) at the start of the forum to 25.0 Interquartile range (IQR) (23.2–26.0) at the end of it, suggesting a positive impact of the various plenary and workshop sessions with a 31% increase (P < 0.001) [Figure 4]. There were actually significant changes for every single question ranging from 12% to 83% [Table 1].
|Table 1: Mean score (1st and 3rd quartile) before and after the forum for each question (n = 23 pairs)|
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| Conclusion|| |
The level of satisfaction for the 2019 edition of the IMPACT Forum was very high, with an overall mean score of 4.9 (out of a maximum score of 5). The 2019 IMPACT Forum also achieved positive outcomes with significant changes regarding participants' perceptions and attitudes toward advocacy and related topics. Verbatims in the “key takeaways from the meeting” and “additional feedback” sections of the questionnaire confirmed that participants enjoyed the meeting, got a lot out of it, and felt very energized by it. As mental disorders and epilepsy are among the most neglected topics of Global Health, it is, however, critical that the confidence and energy gained through this forum are put to action, and that local advocacy plans are developed, CSOs are empowered, and strong collaboration with the local media is established.
We are very grateful for the contributions made by all the IMPACT Forum participants who took part in the discussions providing us with very useful material to write the proceedings of this meeting.
Financial support and sponsorship
The IMPACT Forum was fully funded by Sanofi.
Conflicts of interest
Pierre-Emile Bruand and Amy Fall Ndao are Sanofi employees. All other authors declare that there is no conflict of interest related to the writing and publication of this article.
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[Figure 1], [Figure 2], [Figure 3], [Figure 4]