Medical Superintendent, Lingfield Epileptic Colony
- Author:
TYLOR FOX, M.A., M.D. (Cantab.), D.P.M.
There is a considerable epileptic population in institutions in our country. Over 11,000 epileptics are to be found in public mental hospitals, perhaps ^,000?4,000 in institutions for mental defectives, and just under 4,000 in colonies and residential schools for epileptics who are neither insane nor mentally defective. There are no figures to show the number of epileptics in general Public Assistance Hospitals and Institutions. It is probably pretty considerable and includes many who are badly placed in general or in ” mental ” wards.
The number of epileptics living in the community, no one can number, nor is it likely that any accurate enumeration will be forthcoming, as cases with infrequent or slight fits would always escape observation. It is generally * Paper read at Public Health Congress, London, November, 1936.
recognized that there must be a good crowd of them, and that very many of them must find their complaint a serious handicap. But there exists no organization to help or advise them, no authority who has any knowledge of the extent or nature of the problems to which they give rise.
Eight years ago the permanent Committee on Epileptics, a body which has been dormant of late, instituted an enquiry into the number of epileptics known to public authorities in the County of Surrey. The public authorities who were approached included Mental Hospital officials, Poor Law Guardians, Local Education Authorities, Mental Deficiency Authorities, Maternity and Child Welfare Authorities and the Ministry of Pensions. Hospitals were not approached. Out of a total of 781 epileptics reported there were 211 not in institutions, 57 of whom were in receipt of out-door relief. Those not in institutions were classified according to age and mental state as follows:?
TABLE I. Under School Age … School Age? Attending Public Elementary Schools Not attending School … Over School Age Imbecile or Idiot. 7 11 19 M.D. or F.M. 6 9 30 48 Mentally Normal. 40 14 81 144 Total. 13 46 30 122 211
No reference is made to employment in the Surrey enquiry, but the sources of the information make it likely that few epileptics in employment would be reported. These 211 cases represent a proportion of .22 per 1,000 in the general population.
In the early part of this year, a wider enquiry into the number of epileptics in the community, their mental condition, their social status and their need for assistance was undertaken by the Central Association for Mental Welfare, who liberated two trained social workers for the purpose. Certain areas in the County of Essex were selected, with a total population of nearly half a million. They included two boroughs, one new housing estate, one rapidly developing country town and an urban area with a new building estate. Cases were received from Public Assistance Committees with their hospitals and institutions, Education and Health authorities, the Essex Voluntary Association for Mental Welfare, the Royal Eastern Counties Institution, certain neurological and general hospitals and from private persons. As was to be expected, the response to enquiry varied a good deal in different districts and with different authorities, and the available information about individual cases was not always accurate and complete. Indeed, the investigators modesdy claim that their report is only to be regarded as a body of miscellaneous information which may serve as an indication of the state of affairs regarding epileptics in general. Of the 565 cases reported, 125 were in institutions, and these may, for our present purpose, be disregarded. The remainder of 440 living in the community does not represent, for reasons already indicated, anything like the total number of epileptics, which may very likely be twice as large. Even so, it shows an incidence of over .9 per 1,000 of the population. At a conservative estimate therefore there must be at least 50,000 epileptics living in the community in England and Wales.
An attempt is made to classify the 440 cases, according to the mental conditions, into mentally deficient, unstable, sane and those concerning whose mental state there was no information. The mentally defective group is well defined, and consists almost entirely of cases already under voluntary or Statutory supervision. The ” unstable ” group is not a homogeneous one. It includes cases of marked mental deterioration, cases who showed the characteristic irritability, egocentricity and quarrelsomeness associated with the ” epileptic temperament,” and cases also with minor degrees of instability. That it is most important to mark off a group like this, nobody who has any experience of epileptics will deny. There must be very large numbers of epileptics who are not gravely defective in intelligence, and who could most certainly not be called insane, but who are so seriously handicapped by emotional instability as to be complete social misfits, or, at least, to be a serious trial to those with whom they live. Probably this group should be a great deal larger than is indicated in the table. The ” sane ” group would perhaps be better designated mentally normal (after all what are the limits of normality?). This group is, no doubt, far too large. Hospital and other records, painstakingly complete with regard to family history, personal history and neurological signs, often touch very lightly on a patient’s mental state, and many of the mentally normal should no doubt really be placed in the unstable, and possibly the mentally defective group. The following table shows the classification by mental condition, as well as age distribution.
TABLE II. Age. 16 and under 17?50 … 50 and over Sane ” 52 135 14 201 Unstable. 2 22 2 26 Mentally Defective. 26 36 0 62 No information. 44 91 16 151 Total. 124 284 32 440
This table comprises the facts and figures revealed by the investigation. Far more important are the impressions gained by personal visits of the investigators to 57 of the cases under review. First and foremost among these impressions was the exceptional warmth with which the visitors were in every case received, a warmth which showed beyond doubt that there were difficulties to be faced, problems to be solved, and that the patient, and more often his near relatives, were delighted to have a disinterested visitor to whom they might unburden their troubles and from whom they might get encouragement, moral support and advice. Parents were especially grateful to have someone with whom they could discuss problems of care, management and employment, and as the enquiry went on, it became abundantly clear how much need there was for a little common-sense advice. The simple but ever present question of what risks the patient should take was answered in the most diverse ways. Some children were kept always in bed, others continuously and anxiously watched, and never allowed to leave the house alone even though their fits were few and far between. Some mothers, on the other hand, judged that the post of errand boy on a bicycle was quite a desirable one for an epileptic, and one had allowed her son to become a painter with the result that he had fallen 20 feet through a window.
Education often presents a difficult problem. As the law stands children are only sent to residential schools for epileptics if they have fits so frequent or so severe as to preclude their attendance at ordinary elementary schools. In practice, this appears to mean, if they have had fits actually in school session. Some parents however, are unwilling to send their children to residential schools because they fear that associating with more defective children will be bad for them. Local Education Authorities do not press the parents, because the waiting lists are long, and the chances of admission remote. It is only fair to state that during the last three or four years there has been improvement in the residential schools. Lower grade defective children have been discharged or refused admission, and the waiting lists have been reduced. An epileptic child who can remain in an ordinary school may be better equipped, educationally and socially, for after-life, but under medical supervision in a residential school, he will stand a better chance of getting rid of his greatest social handicap, his epilepsy, a chance that is often enhanced by removal from a home environment that is emotionally prejudicial to him. In any case, for the more severe cases, a day school with the necessary coming and going, is out of the question. To complete their task, the residential schools should provide after-care. Advice and assistance in obtaining work on leaving school is urgently needed, but to get suitable work for epileptics of any age is extremely difficult. The survey suggests that the majority of adult epileptics are unemployed, and bitterly resentful of the fact. The most pitiable cases visited were those of men, apparently of normal intelligence, who were unable to get work either because their doctors had forbidden them to work regularly although they were told to ” occupy themselves,” or because their epilepsy was known and employers were frightened of it. One man said ” I am 25, strong enough to lift 2 cwt. and never done a day’s work in my life. It’s a pity.” Depression irritability and resentment inevitably follow and in time turn an unemployed into an unemployable and eventually perhaps into a serious social misfit This process of course takes place more readily and quickly in an epileptic than in a normal person. To obtain, and to retain, work a man must make every effort to conceal his complaint, and at some hospitals it is a common practice for relatives to fetch the medicine, because the patients dare not ask for time off, for fear their complaint became known. The report estimates that out of the 440 cases there are between 60 and 70 men who need help in the matter of employment. The lot of the women is not so difficult. Many marry and have household duties, and anyway they can obtain safe and sedentary occupations more easily than men. Epileptics receiving out-relief are, like many others, directly discouraged from earning a few shillings in their homes or by part-time work. Says the report: ?
‘’ In connection with the part-time or home employment of epileptics in receipt of Out-Relief, it is necessary to take into account that every penny they earn is deducted from their relief. Unless epileptics can earn by a home trade more than their relief, it will be to their detriment to engage in one. This is productive of much apathy and discouragement and will present a very serious obstacle in the way of providing occupation for those who need and want it, but who dare not accept it. It is a regulation which all chronic physical defectives suffer under, and it seems out of keeping with the enlightened policy followed by Public Assistance Committees in other directions. It does not seem just, that certain persons through no fault of their own, should be compelled to live all their lives at the bare subsistence level and be deterred from ‘ coming off the rates.’ “
A truly deplorable state of affairs!
The whole problem of the epileptic in the community may be stated as a problem in mental health, or rather in mental ill-health. And it may be divided into two parts, the ill-health of the patient, and the ill-health of his family. The ill-health of the patient is a long story which can only be briefly summarized here. Associated with or due to his epilepsy there may be mental defect of varying grade, a difficult temperament, uncertain memory, periods of irritability or confusion preceding or following fits, slow or sometimes rapid mental deterioration. These are innate, part and parcel of his complaint. But superimposed on them are all the mental strain and stresses resulting from our failure to provide the epileptic with a proper environment. First among them is want of occupation, and the enforced inaction it brings with it. The anxiety of relatives with regard to fits and the distress of relatives when fits occur are others. Greatest of all is the patient’s realization that he is, and is always destined to be, in some way an abnormal member of his family circle and of society at large, if not a useless burden who would be better out of the way. These added mental stresses are always in action.
It is a commonplace observation that want of occupation and unhappiness increase the incidence of fits. More fits leave their inevitable mark on the patient’s mind, and so the vicious circle goes round and round, with destruction of personality as the end. Important, too, is the mental ill-health of the family. Fits by themselves, involve no small strain. They are dramatic, unpredictable and often very distressing to witness. ” I never goes out,” says one woman, ” without being frightened I’ll find him frizzlin’ on the stove when I comes ome.” But as will already have become evident, fits are only part of the story. Periods of irritability and depression in the patient, his anxiety about work and his resentment against society, must leave their inevitable mark on those who have to live with him. And above all these, there is often in the parents’ mind the haunting fear as to what is going to happen to the patient when they are no longer there. The family with an epileptic in it has hard work to be a happy family. These fears, anxieties and mental stresses in the home are very real things. They impressed themselves forcibly upon the investigators who prepared this report, and, although I have little experience of visiting epileptics in their homes, I can confirm the story a hundred times over from letters and talks with patients of my own who have gone out into the world.
The problems which arise from the Essex enquiry are all too clear. Less clear is it how far and in what manner they can be solved. For some of the cases, institutional treatment would, no doubt, be best. But, apart from the institutions for the insane and mentally defective, there are less than 4,000 places in special institutions in England, and at a modest estimate the problem we are thinking of affects 50,000 people.
In the ideal State, any handicapped citizen capable of some work would receive the standard weekly wage for the type of work he did, the employer paying a share of the wage representing the value of his work, and the State the remainder. In this way the worker would retain the incentive to work, the status and the self-respect that belongs to a normal member of the community. This sounds Utopian, but if applied to certain epileptics on outrelief, or maintained in colonies by Public Assistance Authorities, it would cost the State no more, and would make the world of difference to the epileptic. Short of this, there does seem to be a very real need for some sort of organization, whose business it is to see that epileptics living at home receive periodic visits from sympathetic and knowledgeable people. That the patients and patients’ friends would welcome the visitors has already been emphasized; many hospital and other authorities have given the suggestion a most cordial reception. Even if nothing definite could be done, the visits would probably be well worth while. Troubles shared are troubles halved; the mere knowledge that there was someone in the background, someone disinterested and sympathetic, in whom one could confide would be a help. But surely there is much that can and should be done. The chronic epileptic, unemployed for years, and with a mental horizon progressively narrowing, may be almost a hopeless case, but the same need not be said of the epileptic children who, year by year, are leaving our elementary and residential special schools. For them the world has not yet become an unfriendly place: their minds are not yet embittered by disappointment or dulled by inaction. Now is the time for wise and sympathetic after-care. Want of such after-care has deprived the work of the residential schools of much of its value. Of course employment will be the great difficulty. But with patience and perseverance, suitable or relatively suitable jobs can be found for many patients, by people with local knowledge. Not everyone need ride a bicycle or tend a machine. I am often astonished at the large numbers of epileptics I have known, who keep their jobs, fits and all, as domestic servants, gardeners, general labourers, and even shop assistants and clerks. Still, for many, home trades will be needed, and here it will be the business of the organization, or, better, its local visitors, to know the kinds of home trade in being in any particular area, and in time to compile a list of firms which could offer employment. Home trades cover a considerable range, and probably the work involved in most of them is unskilled, only requiring a moderate dexterity and of course, speed.
Where a little more skill is needed it should not be impossible to provide training. In the London area, the Council for the Provision of Occupational Industries among the Physically Handicapped is able and willing to help. Elsewhere the requisite short and simple training course could surely be arranged by the co-operation of voluntary associations for Mental Welfare or others. In the case of children at residential schools, returning home to areas wittaknown home trades, it should be possible for appropriate training to be given towards the end of the school career. Frequent visits would be called for in the first year or two of the patients after-school life. He would probably need plenty of encouragement to stick to his home trade, for epileptics are not very adaptable people, but they do respond to praise.
Aside from the visiting, an organization such as I have suggested, should press, by itself and in combination with other organizations, for the amendment of the out-relief regulations which, by demanding that any little sums earned by the epileptic are deducted from his relief, remove all incentive to work. Furthermore, it should press for convalescent and holiday homes where epileptics might go. It is the rule, at present, for epileptics to be rigorously excluded from these homes, but epileptics are taken for short holiday and convalescent periods at the Chalfont Colony, Bucks. Co-operation with hospitals would help the organization, the hospitals and the patient. The epileptic needs advice and treatment for his fits, often for some form of mental abnormality or defect, and above all for the social handicap to which his disease gives rise. Efficient treatment demands that the three lines of approach should be interdependent, not separate. A note from the hospital might be of the greatest help in deciding what social advice to give a patient; a note in the opposite direction giving information as to a patient’s peculiarities, the home circumstances, or the position with regard to work would inevitably enhance the value of advice given at a hospital. Moreover, the work of neurological hospitals for chronic cases of idiopathic epilepsy should be lightened. After the first three or four times, the attendance of many of these cases could be cut down to, say, one in every six months, if satisfactory arrangements could be made for the provision of medicine and ordinary medical supervision near the patient’s home. The saving in time and money to patients and hospital authorities would be considerable.
The Central Association for Mental Welfare have done well in making this enquiry into the position of epileptics in the community. The report of their workers, a model of careful observation, reflection and good expression, discloses in no uncertain terms a large and difficult problem, which concerns a number of our fellow citizens. There are men, women and children who are suffering from a complaint, often lifelong, that brings with it severe social handicaps, that may affect the happiness and well-being of the patient’s immediate family, and ultimately, if severe and prolonged, may have a destructive effect on the patient’s personality. The suggestions made whereby the lot of some of these patients may be ameliorated are neither definitive nor final.
They are only suggestions, commended to the careful consideration of men and women of goodwill who have expert knowledge of epilepsy or who are wise and experienced in dealing with social problems.
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