INTERNATIONAL LEAGUE AGAINST EPILEPSY (ILAE)
Commission on European Affairs (CEA)
October 9, 2011
Chair : Ms. Astrid Krag
Professor Meir Bialer The Danish Minister of Health
Jerusalem, Israel
meirb@ekmd.huji.ac.il
Secretary: Your Excellence Minister Krag ,
Professor Alla Guekht
Moscow, Russia It is with great concern that the Commission on European Affairs (CEA) of
Professor Alexis
International League Against Epilepsy (ILAE) has received the news about the
Arzimanoglou impending closure of Dianalund Epilepsy Hospital, the only Epilepsy Centre in
Lyon, France Denmark. We are concerned because epilepsy is such a varied condition that any
well-functioning system of epilepsy care needs to be hierarchical and include a
Professor Michel Baulac highest-level reference centre to take care of the most difficult cases and provide
Paris, France
facilities also for selected groups of patients. These include in the diagnostic field
Professor Thnos Covanis prolonged combined video and EEG registrations, specialized neuropsychological
Athens, Greece investigations and evaluation programmes for the selection for epilepsy surgery,
including special imaging approaches such as ictal SPECT. In the therapeutic
Professor Helen Cross field, the highest level centres provide care for multiple handicapped persons and
London, UK
for patients with non-epileptic psychogenic and other seizures; they also offer
Professor Reetta
vagus nerve and other brain stimulation therapies as well as ketogenic diet for
Kalviainen children with intractable seizures. For several of these, the Dianalund Hospital is
Kuopio, Finland the only place in Denmark where they are available.
Professor Salomon Moshe It is generally assumed that in an adequate health system one highest level
New York, USA
epilepsy centre needs to be available for a population of 4 to 5 million inhabitants,
Professor Emilio Perucca about the population of Denmark. We understand that the present situation is due
Pavia, Italy to changes in your health care system where five regions take responsibility for
their population. It is, however, unrealistic to assume that expertise and facilities
Professor Asla Pitkanen for highest level epilepsy care can be built up in parallel for 5 subpopulations of
Kuopio, Finland
about 1 million each; in addition, such a system would not be cost-effective.
Professor Torbjorn
Tomson
Stockholm, Sweden
Professor Eugen Trinka
Innsbruck, Austria
ILAE Chapter Services Office
7 Priory Hall, Stillorgan, Co. Dublin, Ireland
Ph: +353 1 278 4908
Fax: +353 1 205 6156
www.ilae.org
INTERNATIONAL LEAGUE AGAINST EPILEPSY (ILAE)
Commission on European Affairs (CEA)
In addition to its role in the national health care for your country, the Danish
Epilepsy Centre has also developed into an active and increasingly prolific
Chair : research institution of excellent international renown whose contributions to the
Professor Meir Bialer scientific progress in epileptology would be greatly missed if the Centre
Jerusalem, Israel disappeared.
meirb@ekmd.huji.ac.il
Secretary: For all these reasons, we urgently ask you to ensure the continuous existence and
Professor Alla Guekht activity of the Danish Epilepsy Centre.
Moscow, Russia
Professor Alexis
Arzimanoglou
Lyon, France
Professor Michel Baulac
Paris, France
Professor Thnos Covanis Meir Bialer, Ph.D., M.B.A., CEA Chair
Athens, Greece David H. Eisenberg Professor of Pharmacy
School of Pharmacy
Professor Helen Cross Faculty of Medicine
London, UK The Hebrew University of Jerusalem
Jerusalem 91120, Israel
Professor Reetta
Kalviainen Tel:972-2-6758610 (work)
Kuopio, Finland Tel: 972-2-6522405 or 972-2-6520902 (home)
Fax: 972-2-6757246 or 972-26784010
Professor Salomon Moshe
New York, USA
Professor Emilio Perucca
Pavia, Italy
Professor Asla Pitkanen
Kuopio, Finland
Professor Torbjorn
Tomson
Stockholm, Sweden
Professor Eugen Trinka
Innsbruck, Austria
ILAE Chapter Services Office
7 Priory Hall, Stillorgan, Co. Dublin, Ireland
Ph: +353 1 278 4908
Fax: +353 1 205 6156
www.ilae.org
UFSC
Universidade Federal de Santa Catarina
Centro de Ciências da Saúde - Departamento de Clínica Médica
Campus Universitário - Trindade - Florianópolis-SC
Florianópolis, 10 de outubro de 2011.
To:
The Danish Minister of Health, Ms Astrid Krag,
The Folketingets Sundhedsudvalg, Denrnark
On behalf of the Neurology Section of the University Hospital, Federal University of Santa Catarina,
Florianópolis, SC, Brazil, we are writing to you regarding the Epilepsy Hospital in Dianalund.
It is with great surprise and concem that we took knowledge that the Epilepsy Hospital in Dianalund is
threatened due to reorganization of the Danish health care system. The Epilepsy Hospital in Dianalund is an
outstanding epilepsy centre among others in the world and its activities have been influencing greatly to
improve the quality of life of the people with epilepsy worldwide, promoting exchange of knowledge with
developing countries such as Brazil. The treatment and care for the people affected by epilepsy can only be
achieved successfully by a system comprehensively organized and coordinated by epilepsy centre(s).
Dianalund Epilepsy Centre is the on1y centre providing comprehensive diagnostics, treatment and care for
people with epilepsy in Denrnark.
Dianalund is also an important centre for intemational epilepsy research. An intemational research
consortium for the investigation of the provocative and inhibitory roles of sensory and cognitive stimuli in
the development of epileptic seizures was initiated two years ago, leaded by the Danish Epilepsy Centre, and
involved many researchers from various countries in the world, including uso As the first reports of this
collaboration, four presentations at the Intemational Epilepsy Congress in Rome this year, and the first
results have already been submitted for publication and diverse sub-projects are being developed since then.
The Danish Epilepsy Centre has a very important role in coordinating the various projects in this consortium
and providing methodological advices. Without the continuous input from Dianalund this entire promising
research initiative would fall apart.
Moreover, Prof. Dr. Peter Wolfis one ofthe most relevant scientists in the field ofEpilepsy worldwide. He
has made enormous contributions both in research and education, addressing epileptology at a level of
excellence. Just as an example of his recognized activities, he has conducted the Intemational League
against Epilepsy as President during a recent and very fruitful period.
We therefore very kindly ask you in the interest ofthe people with epilepsy and important research activities
in this field to take the necessary steps to save the existence of the Danish Epilepsy Centre as an
irreplaceable epilepsy centre in Denrnark.
Yours respectfully,
---~
Assistant Professor ofNeurology - Neurology Section
University Hospital- Federal University of Santa Catarina
To:
The Danish Minister of Health, Ms Astrid Krag,
The Folketingets Sundhedsudvalg, Denmark
Shizuoka, October 8, 2011
It is with great concern that we have heard that the Epilepsy Hospital in Dianalund is
threatened by closure due to reorganizations in the Danish health care system.
The Epilepsy Hospital in Dianalund is one of the best epilepsy centres in the world and its
activities have been influencing greatly to the movements to improve the quality of life of the
people with epilepsy worldwide, even of the far east country Japan. The treatment and care for
the people affected by epilepsy can only be achieved successfully by a system
comprehensively organized and coordinated by epilepsy centre(s). Dianalund Epilepsy Centre
is the only centre providing comprehensive diagnostics, treatment and care for people with
epilepsy in Denmark, and is therefore irreplaceable.
In addition to the central role in the treatment and care for people with epilepsy in Denmark,
Dianalund is also an important centre for international epilepsy research.
We are investigating the provocative and inhibitory roles of sensory and cognitive stimuli in
the development of epileptic seizures. This research was initiated two years ago from the
Danish Epilepsy Centre, and involved many researchers from various countries in the world,
including us. This international research consortium has already had four presentations of
results of this project at the International Epilepsy Congress in Rome this year, and a first
research publication has been submitted for publication. Several more sub-projects are being
developed. The Danish Epilepsy Centre has a very important role in coordinating the various
projects in this consortium and providing methodological advices. Without the continuous
input from Dianalund this entire promising research initiative would fall apart.
We therefore very kindly ask you in the interest of the people with epilepsy and important
research activities in this field to take the necessary steps to save the existence of the Danish
Epilepsy Centre as an irreplaceable epilepsy centre in Denmark and as an important
contributor to international epilepsy research.
Yushi Inoue, M.D., Ph.D.
Director, National Epilepsy Centre
Shizuoka Institute of Epilepsy and Neurological Disorders, Japan
Dr Mamta Bhushan Singh DEPARTMENT OF NEUROLOGY
M.D(Med), D.M(Neurology) NEUROSCIENCES CENTRE
Associate Professor & Co-In-charge ALL INDIA INSTITUTE OF MEDICAL SCIENCES
Clinical Neurophysiology Ansari Nagar, New Delhi – 110029 (India)
Tel.: Office: 26588500, 26588700 Extn: 4872
Fax: 91–11– 26588663
Email: mbsneuro@gmail.com
To: The Danish Minister of Health, Ms Astrid Krag and
Folketingets Sundhedsudvalg
Dear Minister and Members of the Folketingets Sundhedsudvalg,
Greetings from New Delhi, India. 7th October 2011
I am a neurologist from India and have had an association of more than two years now with colleagues from the
Epilepsy Centre in Dianalund, Denmark. I wish I was writing to you under happier circumstances but that is not
the case. My close association with my Dianalund colleagues has kept me following the news about the Epilepsy
Centre very closely. Just yesterday I got to know that there is a very real possibility of the Epilepsy Centre being
closed down. This information has made me anxious and concerned enough to write and make an appeal to all of
you.
I know that the Epilepsy Centre at Dianalund is a historical landmark providing state-of-the-art epilepsy care for
many decades in your country. However, the Centre for me is not just a service facility but a very important
epilepsy research centre too. I am a part of an International research consortium of which the Danish Centre too is
a part. In fact, the Danish Centre has spearheaded this International consortium providing exemplary leadership,
research guidance and coordination to all of us who come from a very diverse group from many different
countries. The role of the Danish Centre is central to the success of our consortium and this has already started to
manifest with as many as four research presentations already having been presented in a very prestigious
International meeting recently held at Rome. Many more projects are currently under way and many research
publications likely to emerge from ongoing projects.
On a more personal note, I would add that the Epilepsy Centre has exceeded its’ brief beyond its Epilepsy care
provider and Research Centre roles to being an excellent Ambassador of Goodwill on behalf of Denmark. Coming
from India and being a relatively junior neurologist, I might have never got the opportunity and guidance that the
Danish Centre colleagues have continuously provided to me and others like me. It is because of them that many of
us are encouraged and inspired to work in a more focussed and dedicated manner towards epilepsy research. We
will always hold our Danish colleagues and their Centre in great regard.
I appeal to your kind offices and am confident that you will make the best decision in your wisdom keeping in
mind the enormous impact that the Epilepsy Centre has had and continues to have on epilepsy research and care.
Regards,
Mamta Bhushan Singh,
Dept of Neurology,
All India Institute of Medical Sciences,
New Delhi, India
UFSC
Universidade Federal de Santa Catarina
Centro de Ciências da Saúde - Departamento de Clínica Médica
Campus Universitário - Trindade – Florianópolis – SC - Brazil
Florianópolis, 07 October, 2011.
To Astrid Krag
The Danish Minister of Health
It is with great concern that our group from the Epilepsy Center for Santa Catarina Sate (CEPESC, Florianópolis,
Brazil) we have informed that the Epilepsy Hospital in Dianalund, Denmark’s only Epilepsy Centre, is threatened by
closure due to reorganizations in the Danish health care system. We understand that apart from the Centre’s role in the
diagnostics and treatment for people with epilepsy in Denmark, Dianalund is an important centre for international
epilepsy research.
Our centre (CEPESC) is a very new, (started in 2008) and we received a scientific support from the Epilepsy Hospital
in Dianalund because two of our research fellows stayed there for a research project. We participate in the international
research consortium that is investigating the provocative and inhibitory roles of sensory and cognitive stimuli in the
development of epileptic seizures. This research was initiated two years ago from the Danish Epilepsy Centre, and at the
International Epilepsy Congress in Rome this year, the consortium has already had four presentations of results of this
project, and a first research publication has been submitted for publication. Several more sub-projects are being
developed. The Danish Epilepsy Centre is an important for coordinating the various projects in this consortium and
providing methodological advice. Without the continuous input from Dianalund this entire promising research will stop.
We, from the CEPESC epilepsy center (Florianópolis, Brazil) want to ask you to help to save the existence of the Danish
Epilepsy Centre as an important partner to international epilepsy research.
Professor of Internal Medicine Department
Federal University of Santa Catarina
and
Head of the Center of Epilepsy of Santa Catarina (CEPESC)
Secretary of Health of Santa Catarina State
Florianópolis, Santa Catarina, Brazil
Til
Sundhedsminister Astrid Krag
Folketingets Sundhedsudvalg
Epilepsihospitalet i Dianalund
Dansk Selskab for Klinisk Neurofysiologi ser med stor bekymring på meddelelsen om nedskæring af aktiviteten på
Epilepsihospitalet i Dianalund.
Epilepsihospitalet i Dianalund varetager bl.a. undersøgelse af epilepsipatienter med specielt komplicerede
diagnostiske problemstillinger og patienter hvis korrekte udredning og behandling kræver speciel høj ekspertise og
indsigt.
En lukning af hospitalet vil derfor have alvorlige konsekvenser for patienter med epilepsi, som er meget vanskelig at
diagnosticere og/eller behandle. Derudover foregår der en betydelig forskning og udvikling indenfor det
neurofysiologiske område på Epilepsihospitalet, specielt indenfor epilepsi, og Epilepsihospitalet i Dianalund bidrager
væsentligt til uddannelsen af neurologer, der ønsker at specialisere sig inden for epilepsi-området.
Epilepsihospitalet er derudover den eneste fuldt fungerende neurofysiologiske afdeling i Region Sjælland. En lukning
vil derfor medføre længere ventetider for patienter i Region Sjælland, som har brug for neurofysiologiske
undersøgelser i almindelighed.
Dansk Selskab for Klinisk Neurofysiologi skal derfor opfordre til at man overvejer om man i regionerne eller regeringen
man finde de økonomiske midler til at føre Epilepsihospitalet videre, da en lukning af hospitalet vil have store og
negative konsekvenser for patienter, hvis udredning og behandling kræver helt speciel ekspertise og erfaring indenfor
epileptologi.
På Dansk Selskab for Klinisk Neurofysiologis vegne
Benedikte Wanscher
Ledende overlæge, ph.d.
Formand for Dansk Selskab for Klinisk Neurofysiologi
http://dskn.dk
Klinisk Neurofysiologisk Afdeling
Glostrup Hospital
Nordre Ringevej
2600 Glostrup
telefon 3863 2567
mail: bewa01@glo.regionh.dk
6. oktober 2011
Til
Sundhedsminister
Astrid Krag
Vedr. nedskæringer på Epilepsihospitalet Filadelfia i Dianalund.
På vegne af Dansk Epilepsi Selskab skal vi hermed udtrykke stor bekymring over den aktuelle
situation på Epilepsihospitalet Filadelfia, hvor to specialafdelinger er blevet lukket og patienter
ikke kan modtages til behandling resten af året.
Vi ser os i den anledning nødsaget til at gøre opmærksom på, at en eventuel reduktion eller ophør
af Epilepsihospitalets bidrag til varetagelse af epilepsibehandlingen i Danmark, vil medføre en
betydelig forringelse af det samlede behandlingstilbud til især de hårdest ramte patienter med
epilepsi.
Dette skyldes følgende:
• Der er 35.000 – 40.000 patienter med epilepsi i Danmark. Heraf har 10.000 – 12.500 patienter
svær epilepsi, som i reglen er en invaliderende tilstand, der ledsages af væsentlige psyko-
sociale belastninger, både for patienten og dennes familie. Epilepsihospitalet Filadelfia har
gennem mange år varetaget ca. 15 % af den samlede epilepsibehandling i Danmark. På grund
af hospitalets særlige specialisering er det overvejende patienter med svær epilepsi, der
behandles på Epilepsihospitalet, hvilket betyder, at Filadelfia skønnes at varetage behandlingen
af ca. halvdelen af de hårdest ramte patienter med epilepsi i Danmark.
• Med lukning af specialafdelingerne for patienter med vidtgående fysisk og psykisk
udviklingshæmning ”Havehuset” og ”Ungdomsafdelingen” vil man miste landets eneste
mulighed for længerevarende indlæggelse til observation og behandling / rehabilitering af
patienter med særlige behov. Patienter, som er fysisk og psykisk udviklingshæmmede tilhører
den gruppe af epilepsipatienter, som er hårdest ramt og kan kun vanskeligt behandles under
indlæggelse i det øvrige hospitalssystem, der generelt ikke er velegnet til at rumme denne
opgave. Lukning af disse specialafdelinger vil således medføre, at epilepsibehandlingen i
Danmark langt overvejende fremover alene vil kunne omfatte ambulant behandling. Dette vil
betyde en væsentlig forringelse af det aktuelle behandlingstilbud.
• Epilepsihospitalet Filadelfia har, som det eneste sted i Danmark foruden Rigshospitalet, højt
specialiseret funktion til undersøgelse af mulighederne for kirurgisk behandling af epilepsi. I
tilfælde af reduktion i Epilepsihospitalets funktion vil kapaciteten til denne specialopgave
reduceres væsentligt, medmindre tilsvarende ressourcer overføres til andre steder i
hospitalsvæsnet. Alternativt skal patienterne sendes til udlandet for at modtage denne højt
specialiserede behandling.
• Personalet på Epilepsihospitalet Filadelfia har igennem årtier oparbejdet en uvurderlig praktisk
og videnskabelig erfaring og varetager aktuelt omfattende undervisningsopgaver, som blandt
andet indgår i specialistuddannelse af læger og sygeplejersker. En reduktion og splittelse af
denne vidensbank vil utvivlsomt medføre en forringelse af efteruddannelseskapaciteten inden
for epilepsispecialet i Danmark.
• Epilepsihospitalet har endvidere oparbejdet et højt kvalificeret forskningsmiljø og har opnået
forskningsresultater, der er anerkendt på et internationalt niveau.
Set ud fra et lægefagligt synspunkt er der således ingen tvivl om, at en reduktion i
Epilepsihospitalets funktion vil være et stort tab for epilepsibehandlingen i Danmark og vil
medføre tab af vigtig viden, forsknings- og uddannelseskompetence.
Kopi af brevet er sendt til Danske Regioner
På bestyrelsens vegne, med venlig hilsen
Anne Sabers, overlæge dr. med.
Formand for Dansk Epilepsi Selskab
Epilepsiklinikken, Neurologisk Afdeling
Rigshospitalet, Blegdamsvej 9
2100 Kbh Ø
Tlf: 22463258 / 35458097
E-mail: anne.sabers@rh.regionh.dk / a@sabers.dk