Comprehensive Epilepsy Programs—Norway*




Comprehensive Epilepsy Programs—Norway*


Svein I. Johannessen

Karl O. Nakken



Introduction

In Norway, with a population of about 4.5 million people, only one specialized center for epilepsy exists. It is designated as a national center of competence in epileptology and comprehensive epilepsy service. Being an institution with nationwide responsibilities, its role in the National Health Service system and its program for activities are defined by the Department of Health and endorsed by the Norwegian Parliament.*


National CentER for Epilepsy—historical background

At the end of the 19th century, in Kristiania (now Oslo), the deacons established a home for people with epilepsy. In 1910, they bought a farm in Sandvika, 15 kilometers outside Oslo, where they established a nursing home for the residential care of 64 patients with chronic epilepsy. Dr. Monrad Krohn, professor of neurology at the National Hospital (Rikshospitalet) in Oslo was the first medical supervisor. The deacons were inspired by the epilepsy colonies, which at that time had been established in some European countries, including Denmark and Germany.

In 1924, the institution was donated to the State, which for many years ran it as a nursing home/farm for people with severe epilepsy. To the extent possible, the residents took part in the farm work. In 1954, thanks to a donation from the Norwegian Red Cross, a new unit was built for temporary service to 36 children with epilepsy. The new medical director, Dr. Georg F. Henriksen, specializing in neurology, psychiatry, and clinical neurophysiology, had been trained in epileptology in the United States and Canada.

During Dr. Henriksen’s tenure (1954–1974), the National Nursing Home for Epileptics developed into the National Hospital for Epileptics with 184 beds: 36 for children, 34 for residential care, and the rest for adolescents and adults with difficult-to-treat epilepsy. The patients were admitted from all over Norway to be diagnosed and treated by a multiprofessional staff of about 150. Most patients had not only epilepsy, but also considerable additional problems, such as mental retardation, psychiatric and behavioral disturbances, and neurologic deficits.

In 1974, Dr. Yngve Løyning, a specialist in neurology and clinical neurophysiology, succeeded Dr. Henriksen. In 1975, the institution was renamed the National Center for Epilepsy (Statens Senter for Epilepsi [SSE]), reflecting its development into a multiprofessional comprehensive service center in epileptology. Residential care was abandoned in 1980.

Epilepsy surgery was introduced in Norway by professor Kristian Kristiansen at the Department of Neurosurgery at Oslo City Hospital (Ullevål) in 1949. He had his training at professor Wilder Penfield’s department in Montreal, and Kristiansen was for many years the only Norwegian surgeon who performed epilepsy surgery. In 1976, epilepsy surgery was transferred to the National Hospital (Rikshospitalet) in Oslo. In 1992, the Norwegian Health Authorities decided to centralize this resource-intensive service. Selection of candidates for epilepsy surgery, preoperative investigations, and postoperative follow-up and rehabilitation would take place at the National Center for Epilepsy, whereas neuroradiologic investigations, intracarotid amobarbital (Wada) tests, and diagnostic and therapeutic surgery would be performed at the National Hospital.

In 1971, Norwegian Health Authorities planned to establish additional epilepsy centers in association with the university hospitals in the western, mid, and northern parts of Norway. The center in Sandvika was supposed to serve the southeastern part of the country, increasing its number of beds to 308 (including 92 for residential care) and the number of employees to 340. However, over the next years, it became evident that the additional centers would not be built because (a) the neurologic and pediatric epilepsy service had improved considerably throughout the country, making the need for more centers questionable; (b) the authorities decided that patients in need of permanent care should be treated in their local counties; (c) the economy in all regions had become weaker; and (d) the capacity at the center in Sandvika had improved, owing to the fact that the duration of stays at the center had decreased dramatically. The center would continue its nationwide service with fewer, rather than more beds, provided the staff was increased.

In 2005, the center had 25 buildings, occupying 21,000 m2 of the 400,000 m2 land area. There are 87 beds and about 300 employees.

Despite the continuous improvement of medical and psychosocial epilepsy service in Norway, the need for internal and external comprehensive service from the center in Sandvika is still increasing. The average yearly admission of inpatients over the past 30 years (1975–2005) has increased more than fivefold. During the same time, the number of beds was reduced from 183 to 87. This intensification has led to a marked reduction in average length of stay at the center, from 150 days to 17 days.

In the last few years, the center in Sandvika has been designated as a competence center for severely disabled patients with epilepsy, including those with mental retardation, tuberous sclerosis, and autism.



Development of the Norwegian Health-Care System


Regionalized Service

Since 1976, the system for health service in Norway, as in the other Scandinavian countries, has been regionalized. The intention is that each of the five health regions should have the resources to provide its population with most of the medical and psychosocial service needed. Some of the regional hospitals have supraregional or nationwide service functions, which are often resource-intensive and mostly intended for small groups of patients.

In addition, special institutions with supraregional or nationwide service functions exist for special groups of patients: Those with rare diseases or syndromes, those requiring particularly resource-demanding or multiprofessional services (e.g., drug-resistant epilepsies, cerebral palsy, multiple sclerosis), or those with different ailments in need of the same service (e.g., various physical deficits requiring rehabilitation).


Service Levels

Medical and psychosocial service is provided at four levels of increasing competence: In the local district, in the counties, in the regions at university hospitals, and in the special institutions or centers. The goal is to treat patients at the lowest possible service level as close to their own district as possible. A primary care physician, who calls in other professionals as consultants when needed, coordinates all service. Although rehabilitation teams are available in the counties, a complete multiprofessional staff providing the integrated, comprehensive service necessary for patients with difficult-to-treat epilepsy is established at a national epilepsy center at the fourth service level only.


Mechanisms of Referral

According to the outlined service principles, patients with epilepsy should have access to service on all four levels, depending on the severity and complexity of their condition. In Norway, it is recommended that all patients with epilepsy be referred to a specialist in pediatrics or neurology (depending on the age of the patient) to clarify the diagnosis, etiology, and type of seizures and epilepsy, as well as to initiate, change, or terminate antiepileptic drug (AED) treatment. The general practitioner should monitor the patient’s AED treatment according to seizure control, side effects, and serum concentrations. The specialist should be available for consultation and renewed investigation when needed. Only those with drug-resistant seizures are referred to the National Center for Epilepsy. The number of referrals is restricted for economic reasons. The expenses are covered by the health regions, which require an approval by a specialist at the local hospital.


Barriers to Care

The service system does not impose any barriers to necessary care except the economic barriers for use of service outside the county (i.e., in the regional hospitals and epilepsy center). However, the numbers of pediatricians and neurologists are not sufficient in all parts of the country to give patients with epilepsy access to a specialist as soon as needed. Rehabilitation teams often do not have the capacity or competence to deal with psychosocial problems associated with seizures.

Aug 1, 2016 | Posted by in NEUROLOGY | Comments Off on Comprehensive Epilepsy Programs—Norway*

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