EPILEPSY IN THE WHO EUROPEAN REGION: Fostering Epilepsy Care in Europe All rights reserved. No part of this publication may be reproduced, stored in a database or retrieval system, or published, in any form or any way, electronically, mechanically, by print, photoprint, microfilm or any other means without prior written permission from the publisher. Address requests about publications of the ILAE/IBE/WHO Global Campaign Against Epilepsy: Global Campaign Secretariat SEIN P.O. Box 540 2130 AM Hoofddorp The Netherlands e-mail: [email protected] ISBN NR. 978-90-810076-3-4 Layout/ Printing: Paswerk Bedrijven, Cruquius, Netherlands Table of contents Foreword ................................................................................................................................................. 4 Preface ................................................................................................................................................. 5 Acknowledgements ........................................................................................................................................ 6 Tribute ................................................................................................................................................. 7 Abbreviations ................................................................................................................................................. 8 Background information on the European Region .......................................................................................... 9 1. Introduction ............................................................................................................................................. 11 2. Epilepsy in the European Region 2.1 Epidemiology ...................................................................................................................................... 13 2.2 Management ...................................................................................................................................... 16 2.3 Special groups .................................................................................................................................... 22 2.3.1 Men with epilepsy ..................................................................................................................... 22 2.3.2 Women with epilepsy ................................................................................................................ 22 2.3.3 Children and adolescents ........................................................................................................... 23 2.3.4 The elderly ................................................................................................................................ 25 2.4 Education ........................................................................................................................................... 26 2.5 Economic issues .................................................................................................................................. 27 2.6 Social and cultural issues ..................................................................................................................... 31 2.6.1 Social issues ............................................................................................................................... 31 2.6.2 Cultural aspects ......................................................................................................................... 33 3. Legislation ............................................................................................................................................... 39 3.1 Driving ............................................................................................................................................... 40 4. Professional and public education ............................................................................................................ 43 4.1 Professional education ........................................................................................................................ 43 4.2 Public education ................................................................................................................................. 44 5. Research ............................................................................................................................................... 46 6. Initiatives to address epilepsy in the European Region ............................................................................ 47 6.1 The Global Campaign Against Epilepsy ............................................................................................... 47 7. Challenges ............................................................................................................................................... 51 8. Actions and recommendations ................................................................................................................. 55 9. Annexes Annex I: European Declaration on Epilepsy............................................................................................. 58 Annex II: WHO paper to Cabinet ............................................................................................................ 59 Annex III: Organizations ........................................................................................................................... 61 10. References .............................................................................................................................................. 65 11. Further information ................................................................................................................................ 73 Fostering Epilepsy Care in Europe 3 Foreword Epilepsy is responsible for high levels of suffering, The Campaign aims to assist governments affecting more than 50 million people worldwide, worldwide to ensure that the diagnosis, treatment, thus making it an important public health problem. prevention and social acceptability of epilepsy are In Europe 6.000.000 people are affected. Sufferers improved. are of all ages, but epilepsy especially affects children, adolescents and the aged. The strategy has two parallel tracks: raising general awareness and understanding of epilepsy; and Epilepsy is the clearest example of a neurological supporting national Ministries of Health to identify disorder for which effective, cost-effective treatment the needs and to promote education, research, is available. Recent studies in both the developing training, prevention, treatment and care services. and the developed world show that, if properly treated, up to 70% of people with this condition The Campaign has been officially launched, and could live productive and fulfilling lives. Yet, in activities are under way in over 70% of the countries developing countries, up to 90% or more of people of the European Region. The collaboration between with this condition are excluded from care and IBE, ILAE and WHO has given the Campaign the consequently remain in the shadows of the so-called opportunity to build a framework for concerted treatment gap. One reason for this exclusion is the action on global, regional and national levels to raise social stigma attached to epilepsy. The stigma of awareness and diminish the treatment gap. epilepsy affects the education of children and young people and the employability of adults. The European activities show that partnerships between WHO and nongovernmental organizations The solutions to these problems are too complex to are clearly the way forward for bringing epilepsy be solved by individual organizations. Therefore, the ‘out of the shadows’. three leading international organizations working in epilepsy - the International League Against Benedetto Saraceno Epilepsy (ILAE), the International Bureau for Epilepsy Director, Department of Mental Health and (IBE), and the World Health Organization (WHO) Substance Abuse - have joined forces in the ILAE/IBE/WHO Global World Health Organization Campaign Against Epilepsy (GCAE) in order to bring epilepsy ‘out of the shadows’. 4 Fostering Epilepsy Care in Europe Preface In Europe, at least 6 million people have epilepsy, The 6 million people with epilepsy in Europe want and 15 million Europeans will have one seizure to go to school, to obtain employment and to at some time in their lives. Nevertheless, in some develop relationships, like any other European man countries of Europe, epilepsy is not recognized as a or woman. brain disorder, and up to 40% of people with this condition may be untreated - the treatment gap. The 6 million people with epilepsy in Europe want the misconceptions, prejudice and subsequent Epilepsy is a treatable condition and relatively cheap stigma to be eliminated through public education medication is available. Professionals who treat programmes. people with epilepsy, however, often do not have sufficient specialized knowledge of the condition, The 6 million people with epilepsy in Europe want to and, in some countries, antiepileptic drugs are not bring epilepsy “out of the shadows”. always available or are not affordable and diagnostic facilities are lacking or are inadequate. It has been The ILAE/IBE/WHO Global Campaign Against estimated that the 6 million people with active Epilepsy is working towards this goal. Let’s bring epilepsy in Europe cost over € 20 billion per year, epilepsy