In the first edition of this handbook, a description of specialized care for epilepsy reflected a rather stable period of health care in The Netherlands. Recent rapid developments in the fields of science, communication, and accessibility with simultaneous changes in demography, and economy however, clash and obstruct the implementation of theoretically feasible improvements in health care. Although most of the objectives of specialized care for people with epilepsy presented in the previous edition are still valid, some must be adapted to present-day requirements. Because this chapter is rewritten during a period in which many of the changes are still in the making, some uncertainties about the future situation are unavoidable.

The objective of special centers for epilepsy are still in essence to (a) offer intramural and extramural care to individuals with epilepsy within the framework of available facilities or facilities to be created in accordance with new developments and knowledge, and (b) promote the control of epilepsy.

Care comprises several elements, including diagnosis, rehabilitation, and temporary or long-term residential care. Diagnosis—the examination, observation, and evaluation of the symptoms and signs of disease and the psychic and social functioning of the patient in order to plan assistance—includes one or all of the following:

Rehabilitation, the second aspect of care, is the integrated treatment of disordered physical, psychic, and social functioning. Finally, as the third element of care, an important precondition for temporary or prolonged residential care is the verification that the specialized center is the most appropriate provision within the Dutch health care system for the referred patient.

The second major objective of the specialized epilepsy care center is to promote the control of epilepsy in general by developing conditions that guarantee optimal physical, psychic, and social well-being for people with epilepsy, or that prevent the development of epilepsy. This can be achieved through:

At present, society considers persons with epilepsy and their relatives to be responsible for the management of their own health. In other words, the patient is no longer comparable to a passenger who boards a ship to be transported to his destination. Rather, he has become a private ship’s captain, who rents a ship and crew and takes over command, only consulting a trained pilot when the waters get treacherous.

In addition, the cost of illness is usually paid by insurance companies, which feel entitled to make patient care decisions on their behalf. This is exemplified by the way health services presently are paid for based on diagnosis-treatment combinations.

In a general article on specialized centers for epilepsy, Meinardi and Pachlatko⁴ reviewed the history of some of these centers. The oldest specialized center is reputedly the hospice of St. Valentine in Rufach, France. Although the institution is still there, it no longer functions as a hospice for people with epilepsy. This chapter concentrates on specialized centers in The Netherlands.

Specialized centers for epilepsy in The Netherlands play an important role, both scientifically and with regard to patient care. In 1985, Meinardi³ described the various theses on epilepsy published in The Netherlands since Prince William the Silent offered a university to Leyden in 1575, in recognition of the city’s important contribution to the liberation of The Netherlands from despotic Spanish rule. During the years 1955 to 1985, more than a quarter of these theses were produced by the staff of specialized centers for epilepsy.

The first specialized center for epilepsy in The Netherlands was founded on January 26, 1882, in Haarlem, in the Western part of The Netherlands. The society created to enable the development of a hospital for people with epilepsy originated as part of the so-called Reveille movement. This movement was started by well-to-do citizens who wanted to put their Christian principles into practice. Years passed before a specialized center was established. The owner and director of a Deaconesses’ Hospice in Haarlem, Lady Teding van Berkhout, was approached several times with a request to admit people with epilepsy. This request was usually rejected, and patients were referred to a psychiatric hospital. Finally, two girls were admitted in 1879, but the experiment was a failure. One of the girls was taken by coach to Bielefeld. In that German city, in 1867, the reverend Von Bodelschwingh had started a specialized center for patients with epilepsy. This experience was decisive; with the help of some friends and allies, the Christian Society for the Care of People with Falling Sickness (the Christian Society) was established, and a small building on the grounds of Lady Teding van Berkhout’s home was opened for girls with epilepsy, partly supported by staff from her Deaconesses’ Hospice. At first, six girls were admitted, but the pressure for appropriate care for people with epilepsy was such that soon other buildings had to be bought to accommodate
an increasing number of patients. In 1885, the mansion “Meer en Bosch” was acquired. For many years, the name “Meer en Bosch” was used as pars pro toto for all activities of the specialized center.

In 1966, the national regulations regarding the financing of health care made it desirable to put the facilities of the Christian Society into separate foundations. The new name, Instituut voor Epilepsiebestrijding (Institute for the Fight Against Epilepsy), was for public relations considerations expanded to include the names of the major campuses of the institute, “Meer en Bosch” and “De Cruquiushoeve.” These campuses, in Heemstede and nearby Vijfhuizen, comprise a total area of 155 acres. Early in the 20th century, outpatient centers were created in parts of The Netherlands too remote for patients to make a one-day consultation with doctors at the major epilepsy centers. These outpatient facilities served for the intake of new patients and after-care for those who could go home after successful reduction or complete suppression of their seizures. During the 1980s, experiments started to expand the services of the outpatient units. Two so-called Polimides were created that used the technical developments of portable electroencephalogram (EEG)-machines and automatic video-registration linked with a piezo-electric seizure detection device to observe patients in their home situation and thus reduce the need for hospitalization in the epilepsy center. Finally, during the years 1988 to 1992, the political trend of paying more attention to consumer needs resulted in a decision to require the Instituut voor Epilepsiebestrijding to build an annex for 80 patients in the northeastern region of The Netherlands. In particular, parents of children with epilepsy had protested to the Ministry of Health that, when intramural tertiary care was needed, they had no other option but to go to a specialized center either in the south or the west of The Netherlands. Permission to build a new epilepsy center was constrained by an order of the government not to increase the total number of beds in the specialized centers for epilepsy. In consultation with the three centers in Breda, Heeze, and Heemstede, it was decided that the Instituut voor Epilepsiebestrijding would transfer some of its capacity to Zwolle. This new center opened in October 1999. The name of the organization now responsible for the centers in Heemstede and Zwolle and nine outpatient clinics in a circle of strategic towns north of the Rhine was changed into Stichting Epilepsie Instellingen Nederland (SEIN). Presently, the intramural capacity of the centers in Heemstede and Zwolle is 600 beds, of which 440 are designated for residential (long-term) care, while facilities in the nine consultation centers North of the Rhine care for 9,278 outpatients.

Only relatively recently has Dutch society ceased to be subdivided along ecclesiastical lines. It is therefore not surprising that, following the successful establishment of a Protestant Christian institution, a secular society against falling sickness was established in 1902, and in 1920, a home for Catholic men with epilepsy. The former had as one of its leaders Dr. L. J. J. Muskens, cofounder of the International League Against Epilepsy (ILAE). In 1902, this group it opened a hospital for people with epilepsy in Amsterdam. The catholic center was established in the South in Geldrop. It was not until the 1960s (although the initiative dates from 1953), that a residential center for women was established adjacent to the home for Catholic men. This new center also provided advanced intramural medical care to both men and women. These two organizations gradually merged into the Epilepsy Center Kempenhaeghe in Heeze, near Geldrop; it has an intramural capacity of 525 beds and also outpatient departments in five different cities that care for 3,869 outpatients.

Several interesting phenomena relating to the social forces that affect health provision can be observed in the development of epilepsy services in The Netherlands. The Hospital Muskens built in Amsterdam near the Municipal University Hospital was closed in 1986. Factors contributing to its closure were the impossibility of expanding the building, because costs of building in the center of Amsterdam were prohibitive. So, when specialized centers for epilepsy began to engage in rehabilitation and provide sheltered workshops for their patients, Amsterdam had to default. Furthermore, the neighboring University Hospital was very much in need of referrals of other patients with chronic illnesses in addition to epilepsy. Willy-nilly, these referrals were accepted, and thus the advantages of a specialized center for epilepsy were lost.

Another interesting development was that, as late as the 1960s, a new, small Catholic epilepsy center comprising 132 beds, named Hans Berger Kliniek, was started in Breda. This facility presently also cares for 2,000 patients via outpatient departments in four cities. This center in Breda was started mainly because of the rapid emptying of a large sanatorium for tuberculosis patients in that city. The decreased need for care of patients with respiratory disorders was compensated for by establishing departments of epileptology, cardiac surgery, and child psychiatry. However, at the end of the 20th century, it became government policy to merge smaller hospitals with only a few specialties with larger, more general hospitals. Although the special center for epilepsy remained an independent foundation, it had to move its facilities to a general hospital, the AMPHIA in Breda. Its intramural capacity was reduced to 56 beds, with an additional four beds for day care. To achieve a situation similar to the SEIN-managed centers in Heemstede and Zwolle, a merger between Kempenhaeghe and the Hans Berger Kliniek has recently been established.

Although hospitals had to merge in order to increase in size, residential facilities for the long-term care of persons with epilepsy, psychiatric patients, or the mentally handicapped were stimulated to reduce their size. In the Heemstede epilepsy center, but especially in the Southern epilepsy center Kempenhaeghe, developments started to change chronic intramural care. Whereas in the past all facilities were on the campus of the epilepsy centers, this changed to smaller community houses in the surrounding communities, with services provided by the epilepsy center.

In yet another development, the university hospital of Maastricht in the south of The Netherlands has chosen epilepsy as one of its priorities for patient care and research and is cooperating with the epilepsy center Kempenhaeghe. Negotiations aiming at a similar type of cooperation are ongoing between SEIN and the Christian University Hospital in Amsterdam. In both university hospitals, units for epilepsy surgery are in development. Epilepsy surgery is also continuing in the university hospital of Utrecht, where modern epilepsy surgery was initiated during the 1970s.

Although beyond the scope of this chapter to detail, all Special Centers for Epilepsy provide, on request, incidental and regular consultations in homes and institutions for mentally handicapped patients. Among the persons cared for in these establishments, 20% to 30% may have epilepsy, with a rather high prevalence of refractory epilepsies: Among 172 patients with epilepsy on optimal treatment in a home for the mentally retarded, 61 (35%) were seizure-free, whereas at the other extreme, 23 (13%) had a seizure frequency between several per week and daily.⁵

In summary, the three specialized epilepsy centers located in Heemstede/Zwolle, Heeze/Breda, and their outpatient clinics in Heemstede, Amsterdam, Leeuwarden, Groningen, Zwolle, Enschede, Nijmegen, Heeze, Sittard, Arnhem, Utrecht, Breda, Terneuzen, Goes, Rotterdam, and The Hague, make specialized care for people with refractory epilepsy available in
16 areas, each serving approximately 1 million of the 16 million inhabitants of The Netherlands.

The specialized centers for epilepsy in The Netherlands must be viewed against the background of health services in that country. In The Netherlands, 16.3 million people inhabit an area of 34,000 square kilometers. One general practitioner is available for every 2,350 inhabitants, and one neurologist for every 22,500 inhabitants. There are 3,015,704 children younger than 14 years old and, for many of them, specialist care is provided by pediatricians. One pediatrician is available for every 2,500 children below the age of 14.

In 2006, a new Health Insurance Act was implemented. Its impact on care for persons with epilepsy can not yet be fully estimated. Under this Act, all Dutch citizens, irrespective of income, must buy a basic package of health insurance. The government has established a list of conditions that must be covered by the basic package. The costs may vary according to the contracts that insurance companies establish with health care providers on the one hand and their clients on the other. The cost will not depend on the age or health of the client. This is made possible through a compensation fund that will reimburse those insurance companies with a higher-than-average proportion of high-risk clients who present extra costs. Once a year, the client can reconsider whether to stay with the same insurance company or switch to one that he expects will better suit his needs. The new Health Insurance Act stipulates that a Netherlands Care Authority be established that will supervise proper execution of the law; it also is mandated with stimulating competition and, where no competition is possible, setting budgets and tariffs for hospitals. (The Netherlands Care Authority absorbs and replaces the present Board for Statutory Control of Health Care Insurances as well as the Board for Health Care Tariffs.)

Many health care items previously covered under the compulsory insurance scheme for low-income people (<31,000 Euro annual income, or those on welfare) are now excluded from basic coverage. Additional insurance to cover these items can be purchased, but is not obligatory.

Consultation with a general practitioner by a person registered as his patient is free of charge. Concomitantly, how insurance companies pay for other services rendered to their clients has drastically changed. A system of diagnosis-treatment combinations has been developed, with input from all parties concerned. Cost elements known to be associated with a particular diagnosis—for example complex partial seizures or appendicitis—are averaged and shown on the bill whether or not all these elements have been utilized for the particular patient named on the bill, such as anesthesia or surgery. How these changes will affect services for people with epilepsy is difficult to predict. An important problem still under debate concerns financing for research needed to optimize diagnosis and treatment. Although special centers for epilepsy in The Netherlands do not have academic hospital status, in the past, the Heemstede center did have permission to include the cost of research personnel in its fees, a practice that has not yet been approved under the new regulations.