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Special care for those with the worst epilepsy SPECIAL CARE FOR THOSE WITH THE WORST EPILEPSY
Most people with frequent seizures are looked after at home by devoted parents or partners. Sometimes a fragile situation breaks down and it is clear that a person with epilepsy cannot cope at home. Obviously if it is believed that this is a purely temporary setback likely to be improved by modification of anti-epileptic medication, then the family doctor will arrange a short stay in a neurological unit or in a special centre for epilepsy. Occasionally, however, it is obvious that neither the domestic situation of the person with epilepsy, nor their epilepsy, is going to improve in the foreseeable future, and long-stay care has to be arranged. The precipitating factor is very often the illness or death of the last surviving supporting relative.
In the middle of the last century, an increasing social commitment to those less fortunate than the majority resulted in the establishment of 'colonies' for people with epilepsy. The general plan of such colonies in Europe was of a totally self-contained institution. During the day, the people with epilepsy would work in the open air, in arable and stock farming, and at night they would return to dormitories, or, in the more advanced colonies, to small houses in which some semblance of a family circle was maintained. Many people with severe epilepsy spent the greater part of their lives in such institutions. Unfortunately there is still a need for such long-term care. In the UK there are approximately 2000 people with epilepsy in the former colonies, now called centres for epilepsy, and perhaps another 3000 in other types of residential accommodation supported by local authorities.
An intriguing fact is that about one sixth of those in the epilepsy centres have rare
seizures—less often than once a year. Some of these epilepsies have, as it were, burnt themselves out, but the subject has been so long in the institution that they have no base or family circle to which they may return, and the centre is a much-loved home. The other explanation is that epilepsy, although a 'required' disorder for admission to the centres for epilepsy, may not be in itself a great problem—the major reasons for admission being associated impairment of intellect or major physical disability due to brain damage, of which epilepsy is only one symptom. By and large, those in special centres for epilepsy have what has been termed ‘epilepsy plus’—epilepsy plus some other major handicap.
The role of the former colonies has gradually changed over the years. First, the word colony, with its implications of dependency, has been dropped, and the name 'centre for epilepsy' has been adopted. Secondly, the centres have established much closer links with university departments of neurological sciences. Indeed much of the best research work in epilepsy in Europe emanates from the former colonies. Thirdly, the centres have taken a greater role in the assessment of patients with severe epilepsy, admitting them for neurological and occupational evaluation for a short period of a few weeks. Fourthly, they are more outward-looking in the employment of people with epilepsy. Sometimes the centre is used as a hostel to which people with epilepsy who can almost, but not quite, manage on their own can return at night.
All this activity does mean that the primary role for which the colonies were established—a sheltered residential home for those people with epilepsy unable to cope outside—is in danger of being submerged. We can tell when this is happening to a centre, because my letter requesting admission for a patient received a reply that the patient 'would not benefit' from residence in the centre. In a small proportion of cases, one has to accept that benefit is not likely to occur, and all that is wanted is a clean, quiet, and kind place to live.
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Epilepsy
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