Date: June 2, 2023

Location: South Africa

Introduction: In a concerted effort to improve the lives of individuals living with epilepsy and other neurological conditions, Epilepsy South Africa hosted a series of consultative and internal workshops between January and March 2023. These workshops, held across all nine provinces of South Africa, aimed to build organizational capacity and gather input for the development of the National Plan on Epilepsy and Other Neurological Conditions. With the participation of over 500 individuals, this initiative signifies a significant step towards addressing the challenges faced by those affected by these conditions.

Building Organizational Capacity: The internal workshops organized by Epilepsy South Africa focused on building the capacity of the organization’s Integrated Global Action Plan (IGAP) team. The goal was to enhance their ability to support the implementation of the IGAP at the local and provincial levels. By equipping the team with the necessary skills and knowledge, the workshops aimed to ensure a more effective roll-out of initiatives that directly benefit individuals with epilepsy and other neurological conditions.

Raising Awareness and Gathering Input: Simultaneously, the consultative workshops targeted persons with epilepsy, individuals with other neurological conditions, non-profit organizations, and local and provincial government representatives. These workshops aimed to raise awareness about the IGAP and gather valuable input to inform the National Plan on Epilepsy and Other Neurological Conditions. By actively involving stakeholders in the planning process, Epilepsy South Africa sought to ensure that the needs and perspectives of those directly affected were considered in the formulation of policies, plans, and legislation.

Diverse Representation and Expertise: The consultative process was guided by a dedicated team, including the IGAP Civil Task Force and prominent individuals in the field. Sharlene Cassel, National Director of Epilepsy South Africa and Chairperson of the South African Disability Alliance, led the Civil Task Force, providing valuable insights as a person living with epilepsy. Professors Jo Wilmshurst and Gail Scher, renowned experts in pediatric neurology, lent their expertise to the task force, alongside Dr. Thea van der Merwe, a psychiatrist and person with epilepsy. The team also included Suene Issel, an advocate for awareness initiatives in rural areas, and Shaun Vorster, a stroke survivor and volunteer, bringing their unique perspectives and experiences to the table. Marina Clarke, a disability activist and trainer, served as the IGAP Project Advisor, utilizing her expertise following her retirement as the National Director of Epilepsy South Africa.

The Road Ahead: As June 2023 approaches, Epilepsy South Africa gears up for the submission of the draft National Plan on Epilepsy and Other Neurological Conditions to the National Government. This submission will trigger the establishment of the Government IGAP Working Group, responsible for finalizing the plan and seeking Cabinet approval. Additionally, efforts to expand the Epilepsy SA media liaison initiative will enhance media coverage of disability issues, fostering greater understanding and support for those living with epilepsy and other neurological conditions. The development of an informative IGAP information booklet and a series of video clips will further disseminate critical information to a wider audience, empowering individuals with knowledge and resources.

Conclusion: Epilepsy South Africa’s consultative and internal workshops have laid the groundwork for a comprehensive National Plan on Epilepsy and Other Neurological Conditions. By involving diverse stakeholders and harnessing the expertise of professionals and individuals living with these conditions, the organization is driving positive change in South Africa. With continued dedication and collaboration, the flame of potential for those affected by epilepsy and other neurological conditions is being ignited, paving the way for a more inclusive and supportive society.