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Demonstration Projects

This project aims to reduce the treatment gap and social/physical burden of epilepsy through demonstration projects, education, stigma reduction, and the development of models for epilepsy control worldwide. The project involves coordination in various countries and regions, development of guidelines, legislation review, and collaborative research.

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Demonstration Projects

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  1. Demonstration Projects • General Objectives • Reduce treatment gap and social and physical burden • Educate health personnel • Dispel stigma • Develop models for promotion of epilepsy control world wide • Integration of epilepsy care in health systems

  2. Coordination of Demonstration Projects • AFRO Senegal, Zimbabwe, Congo, Cameroon, Rwanda • AMRO Brazil, Honduras • EMRO Pakistan, Afghanistan, Djibouti, Sudan Somalia, Yemen • EURO Georgia, ? • SEARO D.P. Korea, India, Indonesia, Myanmar Nepal • WPRO China, Mongolia

  3. Demonstration Project: China Prior to demonstration project Prevalence: 5.000.000 Treatment Gap: 30% After demonstration project Prevalence: 9 - 12.000.000 Treatment Gap: 65% Prevalence + treatment gap: grossly underestimated

  4. Demonstration Project: China • Approval by Ministry of Health • Expansion: 6 16 provinces 2.5 40 million inhabitants • Epilepsy care to be included in primary care in rural China • Funding: administrative + financial support through local governments Project Sustainable

  5. Demonstration Project: Brazil • Situation assessment • Life-time prevalence of epilepsy 9.2/1000 • Prevalence of active epilepsy 5.4/1000 • Treatment gap 38% • Outcome assessment: Model of epilepsy treatment at primary health level based on the existing health system is effective providng important reductions in seizure frquency and general well being • Epilepsy has been officially adopted as a theme to be considered in elementary education by the Ministry of Education • A National Epilepsy Programme is under review at the Ministry of Health

  6. Demonstration Projects Ultimate Goal • Development of a variety of successful models of epilepsy control that can be integrated into the health care systems of the participating countries and regions and, finally, applied on a global level

  7. Development of Guidelines • Within GCAE framework guidelines to be developed on: • treatment in childhood and adolescence • burden of epilepsy • treatment with essential drugs • Ongoing: • Evidence based guidelines for diagnosis and treatment of neonatal seizures in developing countries • Facilitator: WHO Collaborating Centre: Oasi Centre, Italy • Involvement: ILAE/IBE/WHO experts

  8. Epilepsy and Legislation Project Background • Laws impacting people with epilepsy’s lives outdated • Laws fail to adequately promote and protect human rights • Laws sometimes actively violating rights • In many countries total absence of legislation • Examples of legislation based on centuries of stigmatisation in many countries

  9. Epilepsy and Legislation Project • Objective: Collect information related to existing legislation and regulations in connection with epilepsy in order to review comprehensiveness and adequacy of these legal measures in promoting and protecting rights of people with epilepsy • Coordinated by SEIN, Netherlands

  10. Countries who have completed the survey

  11. Anti-Stigma Project Background • Stigma and exclusion common features of epilepsy in both the developed and developing countries • Stigma: major contributor to burden associated with epilepsy • Reducing stigma of epilepsy key to reducing impact and improving quality of life • Effective health policy initiatives to reduce stigma of epilepsy to be developed and implemented

  12. Collaborative Research on Epilepsy and Stigma (CREST) project • Phase 1: Pilot projects on development of culturally appropriate approaches to reducing stigma and discrimination associated with epilepsy have been carried out in China and Vietnam • Phase 2: A targeted multi-strategy intervention to reduce epilepsy-related stigma in China being developed for funding by the investigators

  13. In collaboration with: • Alzheimer's Disease International • European Parkinson's Disease Association • International Association for Study of Pain • International Bureau for Epilepsy • International Headache Society • International League Against Epilepsy • Multiple Sclerosis International Federation • World Federation of Neurology • World Federation of Neurosurgical Societies • World Headache Alliance

  14. Evidence for public health framework for neurological disorders • The burden is already high and increasing further • Many neurological disorders can be prevented and treated • Cost-effective interventions are available • Resources are available, however, inadequate and inequitably distributed • Stigma and discrimination are associated with most of these disorders

  15. Recommendations for action • Gain commitment from decision-makers • Increase public and professional awareness • Integrate neurological care within the primary health care • Incorporate rehabilitation into the key strategies • Minimise stigma and eradicate discrimination • Develop national capacity and international collaboration • Establish links with other sectors • Define priorities for research

  16. The way forward

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