The term epilepsy center is used to denote two different situations in the United Kingdom: (a) a collection of professionals specializing in epilepsy and offering different aspects of service at a specified geographical site or area and (b) residential centers for children or adults with epilepsy that offer short- to medium-term assessments, longer-term placements, or both. There are two main types of residential centers, sometimes existing together at one site: The adult centers and the epilepsy special schools.

It might be argued that a comprehensive “epilepsy center” should comprise a group of hospital-based professionals, including physicians who specialize in epilepsy neurosurgery and neuroimaging, in close proximity to a residential center that can offer longer-term assessments or indefinite care in selected cases.

A major change in attitude has occurred, from the earlier concept of an “epileptic colony” to that of a residential center that has strong community links and emphasizes preparation for living within society. This contrasts sharply with the image of an “asylum” that either protects the individual with epilepsy from the community or protects the community from the person with epilepsy; neither of these aims would be considered acceptable in current practice.

It is interesting to note that the early residential centers were actually referred to as “colonies,” for example, the Lingfield Colony and the Chalfont Colony. Both these centers have changed their names to reflect the change in attitude.

The history of epilepsy centers in Europe seems to be relatively short. The monks at the priory of St. Valentine at Rufach in Alsace provided a “hospice for epileptics” at the end of the 15th century. The Bishop of Wurzburg started a home for people with epilepsy in 1773. In the United Kingdom, the National Hospital for the Paralyzed and Epileptic opened in Queen Square, London, in 1860. The Lingfield Colony (now The National Centre for Young People with Epilepsy) was founded in 1898 by a group of Christian people who had been inspired by Pastor Friedrich von Bodelschwingh. This man had taken over the center at Bethel near Bielefeld, Germany, in 1872, 5 years after it had been established. Subsequently, The Chalfont Centre was founded in Buckinghamshire in 1894, and the David Lewis Centre in Cheshire was opened in 1904. The Park Hospital in Oxford later provided medium-term residential assessments for children with epilepsy, and Bootham Park Hospital in York has provided specialist services, primarily for adults. St. Elizabeth’s School and Home at Much Hadham in Hertfordshire and the Meath Home in Surrey initially provided only for female patients but now accept patients of both sexes. The Quarriers Homes in Scotland also have a long tradition of providing residential care for adults with epilepsy.

What is the role for these epilepsy centers in a country with an advanced system of medical care, in which the emphasis is on moving services out into the community? People with epilepsy certainly should lead lives that are as normal as possible and, for most, this implies that they should be living in the community. However, there are two situations in which the epilepsy center may play a role. The first of these is for short- or medium-term assessment and treatment. If there is real diagnostic doubt that cannot reasonably be resolved by the hospital services, it may be appropriate to use the specialist residential center to clarify the diagnosis. The center may also be used for complex, protracted changes in antiepileptic drugs, particularly if a significant risk for status epilepticus is involved. The second situation arises when longer-term placement is needed for a very small proportion of people with epilepsy whose needs cannot reasonably be fulfilled using resources available in the community. The number of people with epilepsy in this category has, appropriately, diminished steadily over recent years, both because of better treatment and because of changing attitudes.

Some of the possible reasons for referral to a residential center are listed in Tables 1 and 2. It is not simply the presence of these factors but the degree to which they hamper satisfactory management that is likely to determine whether the epilepsy center must play a role or not. The possible reasons for referral have been discussed in detail elsewhere.^2,3

It is mandatory that a specialist epilepsy center have a team of doctors, other caregivers, educational specialists, psychologists, physiotherapists, occupational therapists, and speech therapists if it is to provide a full range of services. This necessarily implies that, to be viable, the center has to be of a reasonable size and have a moderately large number of residents at any one time. An alternative would be for the center to share facilities with other establishments. In practice, the centers tend to be moderately large, and consequently they are relatively few in number across the country. The geographical location may not be very convenient. The Winterton Report⁷ on services for people with epilepsy recommended that two new special assessment centers be set up, partly to reduce the distances patients have to travel. This document referred to earlier reports
by Morgan and Kurtz⁵ and Reid,⁶ which stated that “special centres should be provided for those people with epilepsy whose management presents particular problems,”⁵ and “the evidence is of a continuing number of young adults, both males and females, requiring a period of inpatient treatment during which they can be observed by trained staff, investigated and started on remedial programmes of treatment—special centres should, therefore, be seen to have a continuing role.”⁵ In the current financial climate, however, it seems unlikely that additional centers will be initiated. It might be argued that the centers should be placed closer to large populations. For historical reasons, they have tended to be placed in rather rural situations, because they were founded at a time when close links with the local community were not considered to be essential. There was no particular reason why a “colony” needed to be near a heavily populated region. The current philosophy of facilitating close links with the community, however, implies that the centers should ideally be closer to the communities they serve.