European Epilepsy Service Award 2024

University education

Study of psychology and sociology at the universities of Regensburg (DE), Groningen (NL), and W-Berlin (DE) with Diploma degree (M.Sc.) (1970-1976)

Extra-occupational study of Bioethics at the universities of Nijmegen (NL), Leuven (BE), Basel (CH) and Padua (IT) with degree of “European Master in Bioethics” (2005-2007)

Professional activities

I have been working in various areas of the v. Bodelschwingh Foundation Bethel since 1977:

a) Workshop for people with disabilities and epilepsy. Developing skills to increase their chances on the so-called free market (1977-1982).

b) Short and long term wards for children and young people with epilepsy and with or without severe disabilities (1982-1992).

c) Epilepsy-Center Bethel, Mara Hospital and Society for Epilepsy Research (1992-2017).

 

Peter Wolf, head of the Epilepsy Center Bethel since 1985, saw the development and improvement of services for patients with epilepsy (e.g. including epilepsy rehabilitation) and the education of professionals and patients as a top priority. I had the great privilege to work in his team, e.g.in developing a concept for comprehensive care in epileptology that integrates diagnosis, therapy, rehabilitation, psychotherapy and social counselling. In close contact and exchange with partners from other epilepsy centers, a network of services and research projects (e.g. Project Independent Living with Epilepsy) was created. More than 100 doctors, psychologists, nurses, occupational therapists and EEG-technicians from almost all European countries and beyond came to Bethel. We learned a lot from each other. I was responsible for organizing scholarships and individual programs with a broad spectrum (e.g. epilepsy and art, dance, theater). Rehabilitation units (e.g. Budapest) and counseling units (e.g. Lithuania) were set up.

I was involved in the worldwide campaign “Out of the Shadow” and the “European Declaration on Epilepsy” both of which provided impetus for political action.

Education as priority led to innovative projects:

a) Since 1997, EUREPA, the European Epilepsy Academy pushed continuing medical education, and transformed itself into VIREPA, the virtual epilepsy academy on the internet.

b) We developed curricula for Professionals Allied to Medicine in Epilepsy (PAMs) (since 2002) together with colleagues from the Bethel Education and Counseling Department, at times also with colleagues from Malta, Hungary, Lithuania, Slovenia and Germany who participated in an EU Grundtvig project (2005-2007). The curriculum was first implemented and evaluated in Germany. The courses are in high demand and this qualification for non-medical professionals is part of the official S2k-guidelines for the treatment of patients with epilepsy in Germany.

c) At the same time, FAMOSES, an educational program for children with epilepsy, youth with epilepsy (in development) and parents of children with epilepsy was developed, implemented and evaluated with professional partners from Switzerland, Austria and Germany, members of self-support groups and research groups. Translations into

other languages were accomplished and the programs were disseminated via the regional epilepsy organizations (e.g. Japan). The basis for the development of FAMOSES was MOSES, the program for adults with epilepsy, which I evaluated together with Theo W. May in 1999.

 

My Research interest still include epidemiology of epilepsies in Germany, psychosocial issues, the efficacy of educational studies, attitudes of the public towards epilepsy, evaluation of measurements and ethics - often together with Theo W. May and Rupprecht Thorbecke.

These activities led to membership in various commission of the German Chapter of the ILAE.

From 2004 to 2009 I served as secretary in the Commission of Education of the ILAE and was responsible editor of the “Global Education Agenda”, the first one to address the worldwide necessity of education in epilepsy.

From 2017 to 2021, I chaired the first IBE Commission on Education, Research and Telemedicine, which compiled examples of good practice and collaboration under the restrictions imposed by the Covid pandemic

I have been a member of the Michael Foundation for Epilepsy Board of Trustees since 2011 and I am honored to continue my commitment to epilepsy education and support, as well as the publication of well-founded epilepsy information for professionals and lay people.

Last but not least: everything happened in co-operation with colleagues from Bethel, from Germany and from almost all European countries. Many of us have become friends. So the epilepsy community is also a peace project.