Epilepsy and WHO | 17 Oct 20081 |
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
Epilepsy and WHO | 17 Oct 20082 |
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
Epilepsy and WHO | 17 Oct 20083 |
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
Epilepsy and WHO | 17 Oct 20084 |
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
Epilepsy and WHO | 17 Oct 20085 |
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
Epilepsy and WHO | 17 Oct 20086 |
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
Epilepsy and WHO | 17 Oct 20087 |
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
Epilepsy and WHO | 17 Oct 20088 |
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Laws impacting people with epilepsy’s lives outdated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
Epilepsy and WHO | 17 Oct 20089 |
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
Epilepsy and legislation | 12 December 200510 |
Countries who have completed the survey
AFRAMRSEAREUREMRWPRAlgeriaBrazilEast TimorArmeniaIranAustralia
EthiopiaChileIndiaBelarusLebanonChina
GambiaColombiaIndonesiaFranceMoroccoFiji
GhanaCubaNepalGeorgiaPakistanJapan
KenyaGuatemalaThailandItalySaudi ArabiaRepublic of Korea
MozambiqueHondurasKazakhstanTunisiaMalaysia
SenegalJamaicaNetherlandsMongolia
South AfricaMexicoNorwayPhilippines
USAPolandVietnam
Romania
UK
Epilepsy and WHO | 17 Oct 200811 |
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
Epilepsy and WHO | 17 Oct 200812 |
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
Epilepsy and WHO | 17 Oct 200814 |
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
Epilepsy and WHO | 17 Oct 200815 |
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
Epilepsy and WHO | 17 Oct 200816 |
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
The way forward