Residential Schools for Epileptic Children in England
By J. TYLOR FOX, M.D.(Camb.), D.P.M.
Late Medical Superintendent, Ling fie Id Epileptic Colony This article was included in a symposium on ” Epilepsy in Childhood ” which appeared in The Nervous Child {Child Care Publications, Baltimore, U.S.A.) for January, 1947. We cordially recommend that the whole symposium should be obtained and studied by everyone concerned with epileptic children. The articles are designed to show how the educational and medical needs of such children are being met in the States, and an attempt is made to assess the psychological factors in the causation or maintenance of fits and the personality changes resulting from them or from the social frustration involved. Further, the symposium seeks to define the scope and methods of psychological treatment and draws attention to an educational and medical problem too often neglected in current medical textbooks. It should be noted that Residential Schools for Epileptics are almost unknown in the United States, and the article which follows was written largely for propaganda purposes. J.T.F.
At the Lingfield Colony for Epileptics in Surrey, England, we have 255 children between the ages of five and sixteen attending our Residential Special School. They are sent here by Local Education Authorities from all parts of England, who pay a weekly fee to cover education, maintenance, medical treatment and clothing. Only ” educable” children are admitted, or retained, an intelligence quotient of 60 being taken as the lower limit of educability. Until April 1945 every child was certified by a School Medical Officer to be suffering from epilepsy so frequent or so severe as to render him unfit for attendance at a public elementary school; but under the new Education Act the certificate only states that he requires, on account of epilepsy, treatment at a Special Residential School. As residential accommodation of this type is limited, we tend to receive a rather high proportion of children whose epilepsy is severe or who present serious behaviour difficulties. On the other hand we have always received a fair number of children who are subject only to pyknoleptic attacks, and others who have fits only at night, so that unfitness to attend a day school has been rather generously interpreted. There are four homes housing 155 boys, and three homes for 100 girls, classification in the homes being by age. The school is under the charge of a head master with ten whole-time assistant teachers, three of whom (domestic science, woodwork and gardening) are specialist teachers. In the junior section of the school, boys and girls work together. Grading of the scholars presents a difficult problem to which there is no ideal solution. Age, intelligence, temperament and attainment have all to be considered, and the best possible compromise adopted. In addition to the school children, there are 200 patients in the Colony over the age of sixteen. These share with the children the use of a large hall fitted up for cinemas, entertainments, religious services, dances etc., and a hospital, with trained nursing staff, where all cases of serious illness, | including serial fits, are cared for. There are two t resident Medical Officers, and visiting specialist5’ I for eye, ear, nose, throat and dental troubles. j As I am now leaving Lingfield after being Medic*}’ | Superintendent for over 28 years, during which time over 2,000 children have passed through the Colony, it occurred to me that a few observation5 about the value of Residential School treatment for epileptic children might be of interest. Some Advantages of Residential School Treatroe”1
This subject can first be looked at from the poh1’ of view of others with whom the child lives, whether at home or school. If he has many or sevefe attacks, if he cannot get on with his parents ?* brothers and sisters, if he must never go out oi doors unescorted, if there is no one at home to give him the supervision, guidance and companioj1’ ship that he needs, it is obvious that his trans#’ to a Residential School is called for in the interest / of the rest of the household. In many small home I the presence of an epileptic child is an alm^j intolerable burden, which ought to be lifteCSimilarly in the classroom, it is questionable far it is fair to his schoolfellows to submit theflj to the distraction and the disturbance of th? rather unpleasant phenomenon, a major epileptic h’ ‘ Given the right type of teacher, much may be do$ | to lessen the ill effects and even to develop a fu’^ ( spirit of comradeship arising out of sympathy al1 c understanding, but this is asking rather much 0 teachers who are in my experience not unsympathe’1 towards epileptics, but would prefer to show the, sympathy in some other place than a crowd? classroom. One does not want to multiply ins tit tions, and if universal intelligence and understand!^ i could be assured, there would be much to be s in favour of the retention of almost all handicapP children in their homes and at normal scho? but in an imperfect world it seems clear that, ^nether in home or school, the happiness and well ^ing of others is often prejudiced by the presence ?f an epileptic in their midst.
The paramount advantage to an epileptic child p admission to a Residential School is a psychoogical one. He at once becomes a normal member ot the community in which he lives. In the outside w?rld he has always been regarded as someone sPecial: often, it is true, as someone meriting sPecial sympathy, but just as often someone to be father afraid of, and fear may have degenerated nto dislike. The common belief that epilepsy is ,nextricably tied UP with mental abnormality may Jjave led to a quite unwarranted assumption that is in some ways not quite “all there”,
nwittingly, and no doubt unwillingly, society uuds up in the mind of an epileptic child the ^Pression that he is not wanted, an impression at becomes a certainty if he is excluded from tendance at school. The penalties of exclusion , ay indeed be modified by home instruction, but ?nie instruction is at best a poor thing from the EJ* of view of education in the narrower sense, J? n? good at all from the point of view of Ration in the broader sense. In the Residential ??1 all this is changed. In the classroom or e playground any sense of inferiority disappears _ ,?nce. If there are certain restrictions on his optics, e.g. swimming, climbing ladders or trees he r e’ ^ey aPPty equally to all among whom lives. He neither receives nor deserves more ?^Pathy or less welcome than any of his fellows. If .^e makes a fresh start in life as a normal boy. tj.!t is difficult to overestimate the importance of ^change of outlook on the mind of a growing Co ri Abnormalities of temperament leading to ^nduct difficulties and definite episodic outbursts irit rnen^ disorder of varying grades form an but^ra’ part t”ie ePfeptic picture in many cases, uon the other hand many epileptic children are mem t0 ac^ust themselves happily to their environing mere’y because of the frustration and sense of the n0rity l^at that environment has thrust upon in d which disappear like snow in sunshine child s^ential School. Certain it is that many great*1 w^ose conduct in the past has caused a rea deal of trouble settle down quickly as here0?^16 an<^ amenable members of society, and So too we may find at any rate one reason why Scho^n^ cases’ on admission to a Residential cj0m f start off with a considerable period of freePersi !ron? ^tS” a sma^ minority the freedom veek ‘ ‘n most cases it is temporary, lasting for Cont-S ?r Perhaps months. In removing long We ‘nued anxiety or unhappiness or just boredom, tatinre Undoubtedly removing a powerful precipiePile^ cause of fits in many cases of established factoPs^’ or it may be that there has been some c?ndVln ^orne environment which has become rare]y 10rned as a starter. Epilepsy is very but th Relieve, a disease of psychogenic origin, ne course of the complaint as well as the ability of the patient to live in harmony with those about him may be profoundly influenced by his environment. In this connection, I must record my belief that an undue proportion of* our children come from broken homes, or from a family life marred by disharmony and strain, but there are no control figures for the population generally wherewith to substantiate this belief.
Over the common denominator of a liability to fits, a large group of children is assembled varying, not only in the number and type of their attacks and the pathological conditions underlying those attacks, but also in intelligence, attainment, temperament, social adaptability and home training. Generalizations about epilepsy therefore, are almost always misleading, or need very careful qualification, and effective treatment presupposes effective study and understanding of the individual case. It is only in a Residential School that this individual study becomes possible. The information gained by interview and personal observation by the medical officer can be amplified by discussion with the school teacher and house attendant or nurse. In building up a picture of his personality, there will be added to serial intelligence tests and records of school progress, an account of the child’s reaction to class discipline and, most important of all, of1 his ability to mix with his fellows in his leisure time, his powers of self employment and of creating and following up interests of his own choice. Assuming that he has in addition a fairly complete pre-admission history from parent, school teacher and doctor, the medical officer of the institution is surely in a very strong position to give, where it is needed, such counsel to the individual boy or to others as will give him the best possible chance of being set on the road towards social efficiency. Periods of irritability and awkwardness can, often with the help of the fit chart, be predicted, and steps taken to avoid or mitigate them, right friendships encouraged, leisure time occupations suggested and, in a word, common sense psychotherapy carried out more effectively than would be possible in any out-patient clinic.
So much for the drive towards giving the child social efficiency, a matter at least as important in most cases as medical treatment in the narrower sense. In the latter field too the Residential School gives unique opportunity for observation of the individual case. The time of each fit, whether by day or night, can be accurately recorded, and first hand fit descriptions by experienced observers are available. The localizing value of the aura is supplemented by precise observation of how and where the attack starts. These records, taken in conjunction with the personal and family history, enable the medical officer to decide which cases call for electro-encephalography or for the more serious procedure of air encephalography. The number of cases, whether due to local scarring or spacefilling lesions, which will ultimately come into the hands of the neurosurgeon will be very small, but they can be more certainly sorted out in a Residential School than elsewhere. The electro-encephalograph, will also help in cases of doubtful diagnosis, but in my experience few cases other than those of genuine epilepsy (essential or symptomatic) find their way to a Residential School, and where hysterical or even deliberately assumed attacks occur, they more often than not prove to be superimposed on a true epilepsy. Hystero-epilepsy is a term to be avoided. Epilepsy plus hysteria is a diagnosis that will cover most of the halfway cases.
For effective drug treatment, correct and complete fit records are a sine qua non, but the observation of side effects of drugs is also of great importance. The irritability occasionally set up by phenobarbital may be missed unless trained observers, who see the child when he is off guard, watch for it. The correlation of acne or of more serious bromide rashes with bromide medication may easily be overlooked. But it is with phenytoin that this type of observation is of really first class importance, because there is often little or no margin between the anticonvulsant and the toxic dose, and the manifestations of toxicity are so manifold. Nausea, dizziness and rashes, with or without pyrexia, usually, it is true, make their appearance within the first few days, but in our experience ataxia, sufficient to cause staggering, may appear suddenly when the patient has been taking the same dose of phenytoin for months or even years. It is always accompanied and usually preceded by nystagmus.
Gum hypertrophy is a common and troublesome symptom but, in our experience, scraping off the hypertrophied tissue is a satisfactory procedure in the more severe cases and is usually followed only by slow and moderate recurrence. One must always be on the lookout for other signs of phenytoin toxicity. We have seen patients with periodic severe abdominal pain with pyrexia, sleepiness, sleeplessness and various personality changes that have appeared long after medication had been started, and which disappeared rapidly on its cessation. One is driven to the conclusion that, except in small doses and with frequent visits to the doctor, phenytoin is best avoided outside residential institutions, or at any rate should not be pushed.
But it is not only in the treatment of the individual child that the Residential School could and should be more effective. It provides also scope for observation and research along certain lines that cannot be found elsewhere. Accurate fit recording forms the basis for a fascinating study of periodicity, whether long term, measured in days, months or seasons, or short term, measured by the clock through the twenty-four hours. The establishment of peak times, which may be seriously upset by drugs especially phenobarbital, suggest electroencephalographic and biochemical enquiry as to what is happening at and between those times. The effect on fit incidence of emotional or intellectual stress can be noted, as also the effect of fit incidence on the temperament and intelligence. These and other lines of investigation that readily spring to mind would not be carried out, as most | institutional investigations have been carried out, i on a group of older patients with firmly established ( epilepsy and progressive mental deterioration, but on children whose epilepsy would often be of recent origin, and many of whom would possess intelligence up to the normal.
Some Drawbacks of Residential School Treatment I The most common parental objection to a / Residential School is that seeing other children in | fits will make their child worse. Experience shows that there is no foundation for this belief. Rather is he reassured by the entire absence of upset caused by a fit at an epileptic school. Indeed if only the general public would learn to take epileptic attacks in their stride as we do, the lot of epileptics in the community would be immeasurably lightened. A more serious objection is the loss of family life and the limitation of social contacts to the little world of school. This may be partly met by encouraging visitors?at Lingfield we have no set visiting days, and on fine weekends the Colony looks like a general picnic ground. Holidays at home are a more difficult problem. Setbacks j11 r , behaviour or in fit incidence have, perhaps, dis* j couraged us too much, and generally speaking ‘ have tried to limit holidays to one period a yearShops in a nearby village, and not an institution store, should be used for the purchase of sweets and toys, and frequent games matches should he arranged with neighbouring schools. Outings to the seaside are a help. The fight against institutionalization is a particularly important one for children of good intelligence and low fit incidence, who can reasonably be expected to take a full place in the community when they grow up; and early discharge of such children should be carefully consideredso that they may take up a job from home and da; school, rather than direct from a special Resident^1 School with the epileptic label attached to l?Everything must be done that will ease the transiti011 from institution to community. When children , remain at the school to the age of sixteen or beyond) j it is fair to introduce a vocational element into tn? curriculum for the last year or two, and epileptlC children need, perhaps as much as any othef handicapped group, close and systematic follo^ up by sympathetic and experienced workers. It1 no exaggeration to say that upon the efficiency of th after-care service the value of the work done at ** Residential School will ultimately depend. Afferj care reports should be submitted to the Medi^ Superintendent, whose advice should always ^ available. A further objection that may be raise to Residential School treatment is that of expenseOur present inclusive weekly charge is 46s. of’ which is considerably less than that commons made for the blind or crippled.
Some Suggestions about Organization Experience can be my only excuse for offe^ a few observations about organization. ^ necessity for brevity must be the excuse for apparent dogmatism. The school should be a complete unit, not part of a larger institution for epileptics. Older patients in institutions are mostly chronic cases, going downhill mentally, and children should have no contact with them.
. It is well to remember that 25 hours are spent in school each week, and 143 out of school. It is ?ut of school that provides the greater scope for character building. Co-operation in games, music, dancing and acting, the discovery of individual mterest or talent in art, craft or hobby?these are the things that will destroy the feeling of inferiority and enable the epileptic to regain a place in the community.
About three places will be needed for boys, to every two for girls. Girls, with or without fits, Can be tolerated and made useful at home; boys are just a nuisance !
A. lower limit of intelligence at an I.Q. of 70 or ‘5 would make for increased educational efficiency and social harmony, but the school needs of the |oyver grade would then arise. In this country meducable ” children (I.Q. 60 or less) are provided .0r, under the Mental Deficiency Acts. Certain jt is that the more low grade children admitted, he fewer high grade children will come, and the ^igh grade epileptic who needs a Residential chool should be our first concern.
The question of admitting very difficult or I inquent children needs careful consideration. England admission to “Approved Schools” p .rrnerly known as reformatories) is denied to . Pneptics. Application on behalf of delinquents ls> therefore, made to Residential Special Schools Uch as Lingfield. Some of these applications we j^ept, some we turn down. Of those accepted, any, perhaps the majority, mix in well with our other children, but some show no improvement are definitely detrimental to their fellows. t e can request their removal, but to return them 0 their homes is a grave social mistake. The most common types are the dangerously aggressive and the chronic absconder; the petty pilferer or thief takes a fairly low third place; and the sex offender is a very long way behind. In fairness to others these children should be kept out of an ordinary Residential School for epileptics. The numbers may be small, but are probably large enough to merit special provision. In this country plans are being considered, with the encouragement of the Ministry of Education, for starting an experimental school for from forty to sixty ” maladjusted epileptic ” boys.
The family, as opposed to the institution, atmosphere is best maintained by small houses, say of fifteen or twenty children. But these are more expensive, especially in staff. A night nurse can supervise sixty beds as easily as twenty. A hospital or sick bay with fully trained nursing staff’ is essential, but full hospital training is not necessary for the staff in the children’s homes. The elements of child care and management can be taught on the premises and supplemented by simple talks on epilepsy from a Medical Officer. A sense of vocation is generally more valuable than elaborate training. If the vocation has a religious basis so much the better. Epileptics will not fail to respond to it. The existence of the right spirit among the staff is all important. This is a platitude, but it is as true as it is hard to achieve and maintain.
Summary ——–D On the basis of experience an attempt has been made to define some of the advantages of Residential School treatment for epileptic children. Removal from home or day school, indeed, may lift a burden that it is unfair to ask others to bear. For the child himself, the roads to social efficiency and to effective medical investigation and treatments are more easily traversed at a boarding school than elsewhere. Certain drawbacks to this method of dealing with epileptic children are discussed, and a few suggestions about organization submitted.
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