SUU, Alm.del - 2011-12 - Bilag 18: Henvendelse af 11/10-11 fra Igor M Ravnik, MD vedr. Dianalund Epilepsy Centre

October 11, 2011To: The Danish Minister of Health, Ms Astrid Krag andFolketingets SundhedsudvalgWe have been notified about the threatened closure of the Danish Epilepsy Centre Dianalnd. We are not aware ofdetails of plans and what the substitute activities or structures have been planned with this major decision, but wewould like to contribute a word of caution and concern.It is a major threat to lose the accumulated knowledge and experience that the very rare structures for peoplewith epilepsy, oriented into comprehensive care have been able to preserve. Integrating the noble motives ofcharity with understanding of the handicap and stigma, and of the complex neurobiological, psychological andsocial factors that can only be approached by a combined dedicated team working together on a daily basis. Thisdoes as a rule not happen in a fragmented fast-turning clinical institution.We have been facing a major long-lasting consequence in our country - following a seemingly minor changearound 1980 in the re-shaping of medical specialties: abolishing neuropsychiatry - until then the supportingdiscipline to comprehensive epilepsy care - was followed by major degradation of services to people withepilepsy, not only regarding psychological and social but also purely neurological aspects, in spite of agreementsbetween the newly arising institutions and disciplines. These agreements have never realized.Working in a small European country (less than half Denmark's population) Slovenian professionals havelearned that models of care developed in the northern European countries indeed represent the best modelsolutions to study and eventually adopt some of their components as suiting in the best way the needs of this -comparatively - neglected population of chronic neurological patients with high psychosocial co morbidity. Thedepartment of Health is about to discuss the consequences of such a premature step in the past, and possibleways how to re-establish the quality care thus lost, and to support research for people with epilepsy and therights of this population (as quoted by the recent European Declaration on Epilepsy, September 2011).Our plans - not successful as yet - to establish a comprehensive epilepsy care unit in Slovenia have been partlyinspired by the experiences of these centers (Sandvika and Dianalund). Our junior colleagues have been activelyinvolved in the research coordinated from this source.Closure of Dianalund that will hopefully not happen, would represent a loss for the international epilepsycommunity.Thank you for considering our views, and finding solutions to suit the needs of your patients and of theprofessional networks linking Dianalund with international community.