Promising Strategies
Epilepsy affects people all over the world, irrespective of race, culture or social background. However, for people facing the struggle of dealing with epilepsy who live in developing nations, the situation can be overwhelming with little or no resources, high levels of stigma and discrimination, and poor understanding of the true facts about epilepsy. In addition, in some industrialised countries, serves for people with epilepsy can be very poor and epilepsy support associations can struggle to help their members. People can become isolated and struggle to find employment. The result is often poverty, social exclusion, isolation and misery.
This was why the IBE set up Promising Strategies – a funding program that provides crucial funding to support initiatives that directly improve the quality of life for such people.
The IBE Promising Strategies Program, established in 2006, is one of the most successful and innovative of all IBE’s initiatives. To date, the program has supported 81 projects in 37 countries, with a total of US$300,000 provided in support.
Most projects receive between US$3,000 and US$5,000 and, while this can help by providing seed-funding, we would like to further develop the program to provide higher levels of support.
WHERE WE HAVE FUNDED PROJECTS:
Argentina, Bangladesh, Brazil, Bulgaria, Cameroon, Chile, China, Colombia, Czech Republic, Ecuador, The Gambia, Georgia, Guatemala, Haiti, India, Indonesia, Kenya, Laos, Lebanon, Lithuania, Mauritius, Malaysia, Mongolia, Namibia, Nepal, The Philippines, Romania, Sierra Leone, South Africa, Swaziland, Tanzania, Tibet, Togo, Uganda, Uruguay, Western Pacific Islands, Zambia and Zimbabwe.
Promising Strategies 2020
Fourteen years after the first launch of the Promising Strategies Program in 2005, we took time out to reflect on the many successful outcomes: those projects that had continued to run successfully when funding support ended or which had grown and adapted into other initiatives. We also considered those projects that disappointed, by falling short of expectations. One of the biggest issues was the level of funding provided to each project. In our efforts to support as many as possible, the thin spread of funds prevented us from adequately evaluating why some projects were so successful and why others failed to deliver fully on their promise.
We made the decision to address this by selecting a lower number of projects, with a narrower focus in terms of the issues to be addressed, thus allowing an increase in funding for those chosen for support. We were delighted, also, to receive a grant from the BAND Foundation to support this latest round of the program.
We realised also that, for the future, we needed to take on board the new technologies that have revolutionised communications. These technologies provide cost-effective means of equipping both young and old with the training, information and self-confidence to play active roles in their society.
Equally important is the changing role of the patient in decisions made on their care and treatment. The call of the World Health Organization, the European Union, and social and political scientists, for a redistribution of power between patients, experts and specialists in policy and decision-making that concerns them, is also a huge step in the right direction.
The latest round of the Promising Strategy Program, which focuses on the African continent, is funding projects aimed at equipping people affected by epilepsy with the expertise needed to be an equal partners in all aspects of their healthcare, education, employment opportunities, legal rights and, in particular, in issues related to stigma reduction. Many African patient organisations are motivated to change epilepsy understanding on their continent. Unfortunately, the capacity of such chapters in Africa is limited, yet there is a strong desire by these member chapters to build their infrastructure in order to narrow the knowledge gap and to reduce the stigma and discrimination that people with epilepsy face in Africa and which often leads to inhumane treatment by society and even by their families.
Five projects have been selected and their projects are now underway, albeit with some delay due to COVID-19 restrictions.
What is a ‘Promising Strategy’
A Promising Strategy is one that has the potential to foster effective and innovative public health practice around epilepsy. Ideally, a Promising Strategy contains many of the following attributes:
• Establishes a strategy that makes a difference in improving accessibility to accurate, timely, necessary and culturally appropriate information and/or services
• Demonstrates a sustainable effect in the community where it is being implemented
• Is a strategy that can be used to generate policies and initiatives to address systems issues and common problems impacting people with epilepsy and their families
• Is innovative and represents the development of new solutions to common problems impacting people with epilepsy and their families
• Has the potential for replication of positive results if the program is implemented in a similar environment with a similar target population as its original pilot demonstration
• Based on measurable, realistic, and time specific objectives
• Needs-based and data-driven
• Is likely to be implemented in collaboration with other strategic partners
• Has the support of key leaders within the IBE member organisation and broad epilepsy community
• Has a mechanism to evaluate results and get feedback to continue to improve the program.
IBE would like to thank all those member organisations who have generously donated to the IBE Solidarity Fund; a portion of this fund is also being used to finance the program. If your organisation would like to donate to the Solidarity Fund or directly to the Promising Strategies Program please contact the IBE Office. All donations, however small, are gratefully received.
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2020 Funded Projects
Malawi: Fighting Epilepsy Silence in Rural Malawi using Technology
Persons with epilepsy face many forms of stigma and discrimination in Malawi, as well as barriers to access health services ranging from inaccessible health systems to none existence of such services in some remote areas. Non commitment by the government to address these barriers creates a serious treatment gap. Persons with epilepsy now have a high risk of non-adherence to medication, leading to recurrence of seizures which forces many not to participate or be included in society on an equal basis with others.
The project aims to improve the quality of service (health and social) to persons with epilepsy by providing real time evidence of gaps in service using a tracking system. Using mobile phones, persons with epilepsy will work in the community as monitors capturing data that will be sent to a central database to be analysed and used to generated evidence of the treatment gap and social exclusion. The information generated will be the justification for a need to develop a National Epilepsy Plan of Action.
Mauritius: Training preschool teachers about epilepsy
In Mauritius, preschool teachers supervise children up to six years of age. The Early Childhood Care and Education Authority (ECCEA) is a state body that promotes and provides pre-school education and services in the Republic of Mauritius. Research undertaken by Edycs Epilepsy Group through direct phone conversation with 15 teachers from different preschools operated by the ECCEA over the island concluded they have no understanding or knowledge about epilepsy and seizures. Parents reported that their children were bullied while preschool teachers were frightened while witnessing seizures in class, not knowing what to do. It was also evident preschool teachers did not have sufficient knowledge on how to manage and work with children with epilepsy in the preschool setting.
It is therefore essential to equip preschool teachers with adequate and relevant tools to help them identify children with epilepsy in early years, and at the same time to help those children in class, so that no child is left behind. The ultimate goal of the project is to empower 191 teachers from the ECCEA preschools through training in epilepsy and seizure management disorder in class.
South Africa
Epilepsy South Africa has been provided with funding to continue the work it began during Phase 1 of the Utetezi advocacy program, focused on the World Health Assembly Resolution WHA 68:20, that finished earlier in 2020. The association will retain the Utetezi project objectives:
- Establishment of a National Epilepsy Task Force;
- Development and implementation of a National Epilepsy Plan;
- Epilepsy awareness and education; and
- Supporting international initiatives to ensure that the Resolution remains on the WHO agenda.
In line with the criterion for a Promising Strategy to be replicable in other countries and regions, after completion, Epilepsy South Africa would be pleased to share its experiences with other countries wishing to embark on similar projects.
Uganda
Epilepsy Smart Communities is a project of Purple Bench Initiatives in Masaka that will:
- Create understanding of epilepsy among local government officials to support policies that favour people living with epilepsy
- Establish working relations with other NGOs and CBOs to promote programs that are geared towards reduction of stigma and discrimination
- Train trainers to create continuity and to change the mindset of school communities to be epilepsy smart
- Empower caregivers to better manage people living with epilepsy
Respond to the universal call to action for Sustainable Development Goals through the pledge to “Leave No One Behind” in efforts to ensure that all people enjoy peace and prosperity by 2030.
Zambia
The Epilepsy Association of Zambia will carry out a survey to estimate the number of children with epilepsy who are not attending school. It is believed that the number is high owing to the consequences of the disease, which include overprotection, stigma or lack of self-confidence. The study will be confined to the city of Lusaka, as a pilot project. Following the formulation of the 2015 national policy on disability, the vision of the Zambian government is to see that all people with disabilities enjoy equal rights, including the right to an education.
Most of the children being seen at epilepsy clinics have either dropped out of school or withdrawn because they feel they cannot concentrate, or are afraid of having a seizure on the way to or from school. They are ashamed to be known as a person with epilepsy and parents are often afraid to let them out of their sight, guarding them constantly.
The project will establish the reason for the high numbers of children who are not attending school and help them, together with their parents or guardians, to make informed decisions regarding school attendance despite living with epilepsy.
