HL Deb 06 April 1965 vol 265 cc25-49

3.33 p.m.

LORD HASTINGS rose to ask Her Majesty's Government whether they will now consider the Report of the Sub-Committee on the Medical Care of Epileptics with a view to implementing its major recommendations. The noble Lord said My Lords, before I go any further, I think I should declare what is my personal interest in this matter, or perhaps it would be more accurate to say what is my connection with this subject. Some four or five years ago I was invited to become the President of the Newcastle-upon-Tyne branch of the British Epilepsy Association. I agreed to do so, because I remembered that in my youth a boy of my own age, about 15 years old, with whom I used to enjoy that most agreeable form of cricket, village cricket, regularly on Saturdays, suddenly became subject to epileptic fits.

He disappeared completely from our social life. Very little was or could be said about him, and so far as I know he never enjoyed a normal social life again. I remembered that episode, and that is why I took an interest when the opportunity was offered me, although I must admit that up till that time I had not even heard of the British Epilepsy Association. Since then, as recently as last autumn, the Association did me the honour of asking me to become the Deputy President of the national organisation.

So far as we know, there are something like 250,000 sufferers from epilepsy in Great Britain. I think they can be divided into four groups. There are those who have only infrequent attacks and are in every respect, apart from that, normal. It is doubtful whether most people realise that they suffer from epilepsy. Then we have those who have attacks, accompanied by some intellectual or physical disability. The third category is of those who also have behaviour disorders and, in general, are of a rather anti-social nature, although otherwise they are quite normal. Finally, there are those who suffer from the most frequent attacks which are difficult, and sometimes even impossible, to cure.

When we are talking about these groups of unfortunate people, we have to remember at the same time the families, because this particular misfortune known as epilepsy proves to be a great embarrassment and inconvenience and leads to many misunderstandings, not only between families and the community at large, but within families themselves when they are not instructed in the medical and social problems accompanying epilepsy. This means that we are concerned with about one million people, which is a very substantial number in terms of unhappiness and sometimes misery, and considered in terms of the loss of productive work which, if the situation were properly handled, could be expected from these people.

If there is any doubt about this, I think I should quote from the Report which is the subject of my Question, the Report on the Medical Care of Epileptics, produced by a Committee with the noble Lord, Lord Cohen of Birkenhead, as Chairman. This is one of only two parts of the Report, which is heavily underlined and printed in italics: We are, however, prepared to express the opinion, without reserve, that epilepsy is a sufficiently major problem to demand that special medical provision be made for dealing with it. If I may, I should like to turn to some of the major recommendations of this Report. First of all, the Committee said that it was absolutely necessary that Regional Hospital Boards should provide diagnostic clinics and also treatment clinics, with beds available in the latter, in which people could be stabilised—that is the phrase used I think—for as little as two to three weeks, in some cases, or, at the most, two to three months; and that, in addition, there should also be longer-stay treatment and rehabilitation centres. These diagnostic clinics and treatment centres, the Report says, should be under a neurological surgeon with a team—and this is the important point—of paediatricians, psychiatrists, child guidance experts, radiologists, almoners, psychologists and others.


My Lords, before the noble Lord leaves that point, does he not mean a neurological physician?


My Lords, I am subject to correction on that point, and I believe the noble Lord is right. Without these diagnostic clinics and treatment centres, it is virtually impossible to give a sufferer from epilepsy the proper chance that he should have to become assimilated in the community as a whole. Very often he gets no treatment, or he may even get the wrong treatment, and a team is required to put this matter right.

The Committee also suggested that there should also be investigatory clinics for epileptics with behaviour disorders—one of the most difficult groups, that is to say—with 30 to 50 beds; and that these would be most suitably placed at a hospital centre, where the necessary services, such as I have just mentioned, would be available, and particularly at a hospital centre with an active out-patient clinic and follow-up system. Then, in addition, they suggested we should also have resettlement clinics working in cooperation with the general practitioner, the almoner, the disablement resettlement officer, the local health and welfare authority services and other agencies which may exist—the British Epilepsy Association being, of course, one of them.

Now, my Lords, may I for a moment say a special word about the children? About 80 per cent. of the children who suffer in one degree or another from epilepsy are being educated, and quite rightly so, in the ordinary schools of this country, and it is most important that that should continue to be so. In fact, the Report says that no child should be sent to a special school, thereby segregating it from normal children, until it has been to an assessment centre at a hospital, where they can diagnose the exact state and degree of the epilepsy. It is suggested, in addition, that there should be long-stay hospital units for children with bad behaviour disorders. Finally, among the major recommendations—because these are, of course, only the major recommendations; I cannot deal with all of them, for there are too many—there is one which refers to the epileptic colonies: that is to say, places to which people who suffer very badly go and become resident, more or less permanently, and perhaps, unfortunately, more rather than less.

The Report suggests that these colonies, of which I believe there are eleven throughout the country, would be able to fulfil their role rather better if they were in a unified national plan for the management of epileptics and formed part of the National Health Service, and that there should be more emphasis on rehabilitation. Not necessarily everybody who goes to one of these colonies should go there with the belief, or with the intention on the part of the people who run it, that he should stay there always. The main aim must always be to get him out again, through the various services, into ordinary life. But if this is impossible—because it would need legislation to make the colonies part of the National Health Service—there should at least be a much closer association of the colonies with the hospital service. There might be some form of compromise which could be worked out.

I think I have covered the major recommendations. What it really amounts to is that there should, in this country, be a continuing patient service a service for the patient from the general practitioner, who first of all comes up against the case, right through the diagnostic and treatment clinics recommended in the Report and the rehabilitation centres, and finally to the resettlement clinics, where again he will come into contact with all these various people who are interested in the subject—not only the medical but the welfare officer, the local authority service, the voluntary services and so on. There should be a complete cycle to look after these sufferers from the beginning to the end. Because, really, what one has to realise about epilepsy is that it is not just a medical problem it is equally a socio-economic one.

At the moment, unfortunately, these services are virtually entirely lacking because, I regret to say, although this Report was made and issued in 1956, really very little, if anything, has been done about it. We know, through my Association, that there is a widespread ignorance among general practitioners about epilepsy; but, even for those practitioners who are fully aware of the problems and of what to do about them, there are not the necessary services such as those recommended in this Report, and which I have just outlined, to enable the general practitioner to give his patient the best chance in life in the future.

My Lords, may I be permitted to close with a few words about the British Epilepsy Association? Because I should not like the noble Lord opposite or his right honourable friend the Minister to imagine that we are asking for a lot of things and are pressing for them without good reason. Noble Lords may have seen the noble Lord, Lord Taylor, I know, has seen—quite a good little article or report in the Guardian to-day saying that the British Epilepsy Association wants to put on pressure. Of course we do, but I think we have to justify ourselves at the same time; so I should like to spend the next minute or two saying something about the work of the Association. Now we do a good deal—I say "we"; I should say the Association do a good deal—of educational work. We have films; there are the obvious leaflets and posters; there is a very good quarterly journal full of most interesting material on this subject; and recently there was appointed a full-time educational secretary in the London area. This lady has, in six months, I believe, given no fewer than 75 lectures to interested people who, after being written to, have asked for a visit. As a result, there are now a great many more teachers, welfare officers, doctors and other interested people who know something about this problem.

Then there is a welfare service, with a full-time welfare officer who not only helps all the cases which come to her notice at headquarters in London but travels extensively through the country, trying to help in the other areas where we have representatives, and even where we have not. There are also area representatives or organisers already appointed in Newcastle-on-Tyne, Birmingham, Bristol and Cardiff, and it is the intention of the Association to appoint another four or five such representatives when funds permit. The Association aims also to attach to these areas fully-qualified social workers, because directly you get a social worker in the area you find the demand is much greater than you imagined before you started; and it is necessary to have social workers in these areas so that as many people as possible can be given the necessary advice as near to their home as it can be done. It cannot all be done, of course, from London.

Then there are 28 clubs throughout Great Britain which cater for the social needs of these sufferers from epilepsy, in which they can feel thoroughly at home and learn to live with their disability. Members of these clubs include the family as well, and other people who are interested and willing to help but who are not sufferers themselves. This fulfils a very great need. Holidays, too, are organised, both for adults and for children, every year. Another thing that the Association wants to start is a lodgings bureau. One of the great problems of this subject is the question of employment, and it is particularly difficult in the case of a sufferer from epilepsy to find a lodging in order to enable him to take up his employment, or even to go to a Government training centre, which would be preliminary to his getting into ordinary commerce or industry. Therefore we have it in mind to start a lodgings bureau; to get a list of landladies who are willing to take these people, provided that they know they have the help of a social worker in the vicinity should any particular problem arise. We shall aim also to give guarantees to such landladies that they will not suffer from any accident which may occur. We believe that this also is a useful service.

My Lords, there is also research activity. We have started a research fund. Unfortunately, it is a very modest one, but we are able to give grants to certain individual projects that are going on. A good deal of research in the general field of neurology is being done which may be helpful to epileptics, though there is no specific research into epilepsy as such. One is led to believe that, if there were funds available for such research, solutions might be found —because we want to get at the cause of this misfortune. However, I should perhaps leave that particular aspect of the matter to my noble friend Lord Brain, who I am happy to see has arrived. And I may say that if I have been talking for longer than I otherwise should have done, it was to give him time to arrive, because this little discussion has come on sooner than we expected.

Finally, I would say that there is in existence an international Bureau which was started in 1961, and of which the British Epilepsy Association in London can be called the headquarters and the instigators. This Bureau arranges for a good many interesting and useful exchanges of information. For instance, a seminar on "Epilepsy and education" was held only last year in Marseilles at which there were 90 participants from ten different countries. All this must be very much to the benefit in the long run of the people who are suffering from this complaint. I think I have now spoken for as long as I should; I have set out the case for the noble Lord opposite, and I hope that his Ministry will take this matter very seriously. In the last nine years since this Report was published there has been a better understanding in public opinion of the social and economic disadvantages accruing to people with epilepsy. The sufferer from epilepsy has had the feeling that he has been left behind his fellow men; so that I think now, in 1965, we should come to the conclusion that it is time that he was given a fair deal and that the services so necessary for him are provided.

3.53 p.m.


My Lords, as my noble friend Lord Segal has only just arrived he has asked me to say a few words while he is getting his breath. I had no intention to-day of intervening in this discussion. As has been said, it has come on a little earlier than was expected, but I am sure that we are all very grateful to the noble Lord for putting this Question. I was deeply moved when I heard why he was interested in this subject. I must confess that I gave it a little thought, and I wondered why he had switched from what we all know to be his prime political interest to a medical one. I am very happy to learn that his heart is so big that when he sees a boy having an epileptic fit—and there is no doubt that he did so at some time—he is moved to take an interest in the subject.

I am quite sure that all of us, on both sides of your Lordships' House, approve of the recommendations, made by the Sub-Committee referred to in the Question, and it seems curious that in 1965 we have still not provided for this tragic little quarter of a million in our community. As I have said on other occasions, it is unfortunate that the least well-off in the country have the smallest pressure groups; and, generally, it is a long time before Parliament comes round to looking after their affairs. In my opinion these people are doubly unfortunate, because they suffer from a complaint about which so little is understood by the general public and, consequently, the deep sympathy which flows from understanding is not always forthcoming. It was interesting to hear that in the noble Lord's case, far from being repelled and frightened, as many are, he was moved to come forward and to help. Occasionally, the symptoms of this disease are calculated to startle, indeed to frighten, the uninitiated. The result is that often employers are reluctant to employ people suffering from epilepsy, not only because they believe the employee must be less efficient but because they are afraid that, in the event of a fit occurring, the commotion caused might disrupt work. For this reason I believe we should emphasise the need in this field for more social medicine aimed at educating the public and so helping the patient.

It seems to me that, as more than half the cases occur in childhood, every child should receive the most expert care, in order that it can readjust itself to life and recognise that it possesses only a minor physical handicap with which it can come to terms and learn to live. That, I think, is very important. Whatever complaint an individual has, the sooner that he or she, child or adult, sees it in terms of a minor physical handicap (as most are) and the sooner the patient is taught to think of it in relative terms, the better.

I was astonished to learn from a paper on the subject by Dr. Pond, the eminent specialist in this field, that in a survey of epilepsy in fourteen practices in 1960 one-half of the 282 people suffering from epilepsy had not been referred to hospitals either as out-patients or in-patients. No doubt many general practitioners have had excellent results simply by prescribing anti-convulsant drugs. In the post of every general practitioner during the week come advertisements for anticonvulsant drugs, and every pharmaceutical firm recommends this or that new anti-convulsant drug as being superior to the last one that was advertised a month ago.

In this situation, in view of the fact that the patient is better, that the convulsions disappear, that the fits are limited, it is understandable that the general practitioner should feel that the new drug is eminently satisfactory. But, my Lords, I think that immediately the symptoms manifest themselves every patient should be referred to a clinic, or, if we do not have clinics—and the recommendation is that more should be provided, so obviously we do not yet have enough—to a specialist. Of course it would be better to have the team described by the noble Lord, but unfortunately we have not arrived at the stage when that team is operating, because in nearly every case there is a shortage of qualified people. But if the team is not there, then all patients should be referred to a specialist, so that they can be fully investigated and treated. I welcome this debate very much because it will focus attention on the need for giving these patients expert treatment immediately the condition is revealed.


My Lords, the noble Lady pointed to me in connection with the pharmaceutical industry, and I think it is proper to say that I retired from the industry as over age some time ago. But on the problem of drugs for the control of epilepsy, I know that a great deal of money has been spent and effort is continually being directed towards this condition, and I hope that when the noble Lord who is to reply speaks on the subject he will give credit where credit is due—namely, to the enormous contribution which the pharmaceutical industry and pharmaceutical research have made towards the control of this sad condition in the past few years.

4.1 p.m.


My Lords, I rise with some reluctance. If I may be allowed to make a confession, my name was entered upon the list of speakers when I happened to be away in Hungary. But I feel I cannot refrain from rising and adding my own few words to those already so eloquently spoken by the noble Lord, Lord Hastings, and by my esteemed colleague, and friend Lady Summerskill, in an earnest plea that a great deal more should be done on behalf of this unfortunate section of our community.

As my noble friend said, too often we are apt to regard the sufferer from epilepsy as someone in the nature of an outcast from the community. Nothing could be further from the truth. If only we had some means of educating the public, we could get an idea into the head of the average person of the more or less normal course that an epileptic fit invariably takes; instead of a feeling of revulsion, horror and fear, we might be able to create in the mind of the onlooker that calm, reasonable, informed approach, which can do an enormous amount to help the sufferer in the fit and also counteract the effect that this fit may have on onlookers who are present.

Particularly would I stress that, in these days, it is most essential that the sufferer from epilepsy should come to be regarded as an ordinary member of the community. They may develop fits either from early childhood or as a result of some illness during life. They come on without any warning as a result of some severe emotional strain, and in every case the treatment is simple and straightforward. It is now recognised in the whole profession that the treatment of an attack, both at its onset and during the course of the attack, is so simple, that no member of the community should be left in ignorance of how to deal with these cases.

Above all, I would stress that a duty should be laid upon all employers not to regard the sufferers from epilepsy as in any way victims of disability, because in many cases they are people who are highly gifted, highly qualified and highly intelligent, and the fact that they happen to suffer from epilepsy should in no way disqualify them from all the opportunities open to average individuals for pulling their weight in the community. I am very glad that the subject has been raised and that it has been raised by the noble Lord, Lord Hastings, in the way he has brought it forward. I hope that the reply of the Minister, when his turn comes, will be fully adequate to the needs of this unfortunate section of our community.

4.5 p.m.


My Lords, as both a member of the Cohen Committee and a Vice-President of the British Epilepsy Association, I am grateful to my noble friend Lord Hastings for raising this matter to-day. Epilepsy is not in itself a disease, but a symptom, which may be due to many diseases which damage the brain. Many of these diseases occur very early in life, perhaps as the result of difficult labour or the illnesses of infancy, and they often leave no serious disability behind beyond the liability to epileptic attacks. So, while it is true from a scientific point of view to say that epilepsy is not a disease, but a symptom. we have also to look upon it as a disorder which creates quite peculiar personal and social problems. In this respect, it differs from all other disorders, and that is the reason why special pro vision needs to be made for sufferers from epilepsy—a provision which has to be based on the Health Service.

So the Cohen Committee, as your Lordships will know, recommended in 1956 the establishment by hospital authorities on a regional basis of diagnostic and treatment clinics and long-stay treatment and rehabilitation centres. It further suggested that these centres should normally be under the direction of a neurological physician, who should be the leader of a team consisting of pediatricians, psychiatrists, child guidance experts, radiologists, psychologists, almoners and others. Only in this way, we were convinced, could adequate provision be made for the needs of epileptics. It may be said that there are many neurological and neurosurgical and other departments in hospitals, where a great deal is now being done for epileptics. This is perfectly true and I should be the last person to minimise the very valuable research which is going on in this country into many aspects of epilepsy.

But what we are doing now does not really take account of the magnitude of the problem. As your Lordships have already heard, it is estimated that there are something like 200,000 to 250,000 sufferers from epilepsy in Great Britain. Each of these is an individual, who cannot be adequately treated with out, in the first place, as complete a diagnosis of the cause of the epilepsy as is possible. Then he needs continuing medical supervision and attention to personal problems at home, at school, in his occupation and in many other spheres. The large majority of epileptics are not at present receiving this care to the extent that they ought to be.

The object of the proposed centres is to provide this care for as many as possible and to educate both doctors and the public in what can and ought to be done, and thereby to raise standards generally. As your Lordships have heard, nothing substantial has been done to this end in the nine years which have elapsed since the Report of the Cohen Committee. Why is this? It is one of the principles of the Health Service to delegate as much responsibility as possible to the Regional Hospital Boards, hoards of governors and hospital management committees. This has its advantages. but it also has its drawbacks, and I believe, that when a national need like this has been recognised, the Ministers concerned should take much more responsibility for seeing that something is done about it. And he who wills the end must will the means. It is of little use suggesting to Regional Hospital Boards, whose estimates are already being cut, that they should embark on expensive new projects, without making any specific allocation of money to those who are prepared to undertake it.

I pointed out earlier that the Cohen Committee recognised the key position of the neurological physician in relation to the development of these regional centres. But let me draw your Lordships' attention to the plight of some neurological physicians in this country. In Plymouth, where one neurological physician has to provide the service for an area with a population of over half a million people, he cannot get more than six hospital beds, as a result of which many acute neurological emergencies cannot be admitted under his care. In a population of half a million people, as we have seen, there are at least 2,000 epileptics. What sort of facilities for diagnosis and treatment are available to them, in competition with all the other patients suffering from neurological disorders, when the local hospital authorities consider six beds an adequate neurological service for half a million people? Unfortunately, this is not the only instance where neurologists working in the region have not proper in-patient facilities.

I should like to mention what seems to me to be a great opportunity that has hitherto been missed. The Burden Institute at Bristol has done pioneer work of a particularly high standard in the field of epilepsy. It is independent of the Health Service, but it treats Health Service patients, for whom it is paid on a per capita basis. I believe both the Burden Institute and the Health Service would be greatly strengthened if some closer form of collaboration between the two could be developed. The Institute has in fact all the potentialities for just the kind of regional centre which the Cohen Committee recommended.

It is not for me to anticipate what I hope my noble friend Lord Taylor is going to say, but I can myself close on a note of hope. I welcome what the Minister of Health said the other day in answer to a Question in another place, and I have myself been in close touch with the Ministry about this question. I know that in one provincial region things are moving, and we may hope to see a regional centre for Epilepsy established there; and things are moving, too, in the North-East Metropolitan Region, where I have been discussing matters with the senior administrative medical officer. He is preparing a memorandum for submission to the Regional Advisory Committee on Neurology and Neurosurgery, of which I am Chairman, which we hope will lead not only to the development of a regional centre but also to a review of the work now being done at the two long-stay hospitals—the only long-stay hospitals for epilepsy in the Health Service—St. David's and St. Faith's. Patients suffering from epilepsy, and doctors specially interested in the subject, owe a great deal to the British Epilepsy Association, and as the developments we hope for come to pass, the Association, I am sure, will have an even bigger part to play, in co-operation with the regional centres, in the welfare of epileptics.

4.13 p.m.


My Lords, I had not intended to take part in this debate, but it is quite clear that we have a little time this afternoon and I wish to make a comment which really could be made anent a number of the problems which we debate in this House. Before going on, I should like to associate myself sincerely, as others have done, with the comments made by the noble Lord, Lord Hastings, and to thank him for raising this important matter. As he has said (I think these were his words), it is necessary to get the idea into the head of the average person concerning this matter. In other words, part of the solution of this most serious problem lies in an increase in the insight of the general public.

This is true of so many of the problems which we debate in this House. In one debate after another the point is made that we must get people to understand the problem better. The point was made on countless occasions anent the problem of immigration. Indeed, in some areas public insight has increased. For instance, in relation to our whole approach to neurosis and mental breakdown the degree of insight among the public has grown, and it has made the problem easier to deal with. The question of alcoholism is now recognised by the general public as being the disease that it is rather than a moral weakness. With regard to the matter we are debating this afternoon, it has been said—and I am sure it is right—that this is a question which affects at least one million people, including the unfortunate 250,000, plus their families, and it may affect far more.

The point I wish to make is that the means of educating the public is at hand. We have this wonderful modern invention of television. Every time we come to this problem what we have to face is that a political decision made some time ago handed this wonderful instrument of education to commercial usage; and had we not done this, we should be in a position to-day to pursue a part of the solution to problems like this, and others I have mentioned, with much greater ease than is in fact the case. I have talked on more than one occasion to senior officials in the B.B.C. and asked them why the B.B.C. do not undertake more instruction or, if you like, propaganda in this or that area. I think your Lordships know the answer they are there partially to give entertainment, but at the same time they have commercial competitors; the listening gures for the commercial programmes heavily outweigh their own; they are regarded as failures, and they have to do something about it.

I think we all recognise that the more serious programmes, particularly those concerned with social problems which affect a minority of the population, are not the best ways to get good listening figures. So we are constantly in a situation where we have biased the use of a most important instrument, and perhaps the most important instrument, of public education. I am one of those who unrepentantly still hold that this country one day will change its mind about commercial television, or in some way so arrange matters as to divorce it from these' huge profits it is making and the bias of the strong profit motive which inhibits the more educational type of programme, so that when we come to an issue like this, and other issues which are debated in this House, it will be within the realm of Government policy to decide that in the interests of society a certain proportion of the time on both networks (or as many networks as there are) can forthwith be devoted to increasing public insight, and so getting round, partially at least, some of the serious problems which constantly come before us in this way.

4.17 p.m.


My Lords, when I came to your Lordships' House this afternoon I did not intend to take part in this debate, because it deals with a subject about which I know very little, and my purpose in coming here was to try to learn something which I did not know before. I have succeeded in learning quite a lot. However, one point raised by the noble Lord, Lord Hastings, was the position of the epileptic colonies vis-a-vis the National Health Service. It has always seemed to me wrong that if one has a National Health Service it should not be a far more widely embracing service than it is now. Therefore, I should like to support what the noble Lord said on that matter.

I have mentioned in your Lordships' House on previous occasions that there are a number of little health services in the country which are independent health services, and it would be far better for all concerned if they all came under one control and became part of a general service. I should like to thank the noble Lord for bringing up this point, and I just want to say how much I support him in regard to it.

4.19 p.m.


My Lords, I am sure we are all grateful to the noble Lord, Lord Hastings, for raising this question this afternoon. He pointed out, quite rightly, that the Cohen Committee reported nine years ago. I am not going to be defensive I am going to be descriptive. But what I shall be describing will be mainly what has happened in the past when Her Majesty's present Government were not in office. As to the future, I welcomed the reminder of the noble Lord, Lord Brain, that in another place my right honourable friend the Minister had said that although the diagnostic and therapeutic facilities for epileptics have been developed since the time of the Cohen Report, more needs to be done. And more does need to be done—I think there is no question about that.

But I also think that it is important to keep epilepsy in a proper perspective, and not to exaggerate it. There are now, fortunately, many voluntary societies who devote their energy to the study and encouragement of sufferers from particular diseases. This is a very welcome development. One might say that it has replaced the work that used to be done on behalf of the voluntary hospitals. Almost the first of these societies was, I think, the British Diabetic Association, and since then we have had the people suffering from poliomyelitis, the relatives of the mentally subnormal, the sufferers from multiple sclerosis, and many another group, getting together to forward the interests and press the case of these relatively small minorities of patients. This is entirely to the good, and I am delighted that the noble Lord, Lord Hastings, should have associated himself with work of this kind. I am delighted that he should have become Deputy President of the Association, and, like my noble friend Lady Summerskill, I was moved by his description of how he became interested in epilepsy.

Fortunately, most epileptic attacks do not end in the subject's disappearing from circulation. The noble Lord, Lord Brown, said that we must increase the insight of the general public. And of course he is right. The position of the epileptic in society must be regarded as virtually that of a normal human being who has a disability like, say, a weakness of one leg or something of that kind. Above all, people have to learn to treat and deal with those who have the misfortune to suffer from epileptic attacks with a minimum of fuss and without gathering round. The wonderful thing is that in fact most people deal very sensibly—in the street if need be—with a great many cases, in fact the great majority of cases of epilepsy.

Following the Report of the Cohen Committee on the Medical Care of Epileptics, the Ministry took certain actions —though I am inclined to think that the noble Lord, Lord Brain, is right when he says that part of the price we pay for giving autonomy to Regional Hospital Boards and other Health Service authorities is that actions do not necessarily follow precisely the pattern we expect them to follow, or would wish them to follow. A memorandum was issued to Hospital Boards almost immediately commending wholeheartedly most of the recommendations of the Committee. The only recommendation of which I know that it did not commend was recommendation 19, and that was the one about the epileptic colonies. It would have required legislation to bring the colonies within the National Health Service. The noble Lord, Lord Amulree, is quite right when he refers to these as little services, as it were, which exist outside the National Health Service. These colonies are either provided by voluntary association or by local authorities, and are regarded as providing care rather than medical treatment. The only two which can specifically be considered as institutions for medical treatment are the two to which the noble Lord, Lord Brain, referred in the North-East Metropolitan Board area.

The Report was also brought to the notice of local authorities, local executive councils and local medical committees. The Hospital Boards were asked to review their services for epilepsy, and report progress in improving them. They have reported from time to time, and steps have been taken. I think that the time is now probably ripe for us to have another look at the situation. The normal course which an epileptic patient follows is from the general practitioner to the specialist clinic in the local hospital. My noble friend Lady Summerskill spoke most humanely about the lack of sympathy which epileptics may have; about the need to educate the public, and about the importance of the attitude of employers. But she also said that in a certain survey it was found that half the epileptic patients had not been referred to specialised clinics. I think she may well be right. The proportion, indeed, may be higher than that. But this is something where the clinical judgment of the doctor arises, and it would be quite wrong for me, speaking from this Box, to give, as it were, clinical advice to my medical colleagues.

We know that in children, in particular, a fit, or an alleged fit (because very often it is only the mother's description of something happening to the child), can occur from relatively minor causes, and may require no further treatment. Whether all these cases should be referred to specialists is something that I think is open to question, but I should not like to go further than that because the number of children who have such incidents is very large. But usually reference is to the neurological clinic, though sometimes it may be to a general medical clinic or, in the case of children, to the pœdiatrician. Certainly it is very important that any person who has repeated epileptic attacks should be seen by expert neurologists to make sure that the attacks are not associated with other gross neurological disease.

But apart altogether from the neurological cases, there are a substantial number of epileptic patients who suffer from intellectual defect or disability, or physical defect—for example, cerebral palsy. As the noble Lord, Lord Hastings, said, there are a number who also have serious behaviour disorders. These, fortunately, are in the great minority; but when they occur they present a great problem. The first step, clearly, is to make a proper diagnosis, and to make sure that other diseases are not present as well; and to arrange for proper physical treatment, whether by surgery or by the use of, modern drugs, or through the psychiatric services, as appropriate.

Here, one would say how much the outlook has changed for the epileptic in the course of the past twenty years. Modern drugs have vastly improved the outlook for the epileptic, and psychiatric help is also of real value where there are psychological frictions arising, or psychological causes playing their part. The suggestion of the Cohen Committee that there should be special diagnostic and treatment centres has not been generally followed, but the wide spread of general physicians and the increase in neurological and psychiatric facilities have led to an increase in the hospital services available for, and used by, epileptics.

Here, one needs to pause and think for a moment how far it is wise to isolate the epileptics into special epileptic clinics. I think it is an experiment which is well worth considering—and I should like to come on in a few moments to what the noble Lord, Lord Brain, was saying about special clinics—but we want to avoid labelling epileptics. One knows that even such a simple thing as attendance at a child guidance clinic may lead to a child's being labelled in some way as mentally abnormal. The specialised clinic may not always be the right answer.


My Lords, may I just ask the noble Lord this point? Is he not really recommending a rehabilitation centre followed by a resettlement centre? What is needed in the early stages is specialist diagnosis and treatment, and then to get the people out of the segregation area of which the noble Lord is speaking, through the rehabilitation and resettlement centres, so that they come out as normal people.


Provided that the rehabilitation and resettlement centres are, in fact, general rehabilitation and resettlement centres, and not specifically for epilepsy, I would agree with what the noble Lord is saying. I think it is very important that they should be in the general stream of patients and not separated into special epileptic rehabilitation groups.


My Lords, might I make a point here? I suggest to the noble Lord that to have a special clinic for epileptics does not necessarily mean that it must be at a geographically separate place. It could be provided in an ordinary neurological department. Surely one advantage of a special rehabilitation centre would be that specialist experience would be available.


My Lords, I would not dissent from the view the noble Lord, Lord Brain has expressed about this. I think that that would be a very sensible way to do it.

Reference has been made to the survey of the College of General Practitioners. Actually the survey, in which I am particularly interested, was carried out in 1960 in 67 practices, and the findings suggest that about 4 persons per thousand suffer from chronic epilepsy and that 40 to 50 per thousand have had a fit some time during their lives.

The great majority of patients (1,165 out of 1,391) were treated at home without admission to an institution. I am not quite clear whether the noble Lord, Lord Brain, wishes to see every patient admitted for investigation, or whether he is happy to see them investigated in neurological out-patient departments. I should have thought that most of them do not require admission; that only a very small proportion requires admission—for example, cases where there are indications of some other serious disorder, or where it is impossible to stabilise the patient as an out-patient. I am glad to see that the noble Lord, Lord Brain, indicates assent.

Some three-quarters of the chronic epileptics recorded in the survey of the College of General Practitioners were fully employed—and it is worth bearing in mind that employers are ready to carry their share of epileptics. This is an encouraging fact. The figures showed that 12 per cent. were partially employed. and only 8 per cent. were unemployed on account of epilepsy. Admittedly, it is a pity that there should be that 8 per cent., and we must do all we can to encourage employers. But again I must say that. in my experience, employers are remarkably good in these mattars, though there is always more education to be done.

My Lords, we know from the Cohen Report that about 80 per cent. of children with epilepsy are educated at ordinary schools; and this again is precisely as it should be. They should not be pushed out into a stream by themselves if this can possibly be avoided. In ordinary schools it is important that the teachers themselves should know in advance if a child is liable to have an epileptic attack so that they can treat the whole thing with the minimum of fuss and not get agitated and upset. This calls for collaboration between the general practitioners, the school medical officers and the school authorities themselves.

There is no firm evidence that the amount of epilepsy in the community is increasing, but there is evidence that more patients are being admitted to hospital for investigat on, diagnosis and treatment, and that the great majority of these are discharged back to the ordinary community. The estimated number of in-patients suffering from epilepsy discharged from non-psychiatric hospitals rose from 9,300 in 1953 to about 13,170 in 1961. Just as there has been an increase in the number of neurologists, there has been an increase in the number of neurological beds. Although I am sure that we are always short of every kind of bed (and I am sure, also, that the noble Lord, Lord Brain, is not painting an untrue picture when he referred to Plymouth), and that there is no kind of urgently required bed of which we could not do with more, it is good that there is an increase in the number of neurological beds and an increase in the flow-through of epileptic patients who are being properly investigated and stabilised.

There are, however, a great many epileptics who are in general psychiatric hospitals, and I hope that the British Epilepsy Association will not forget the needs of all the epileptics who are not in the colonies but who are in this particular position. In 1961 it was mated that there were 7,500 epileptics in hospitals for the mentally ill (that is, of course, they had a mental illness as well as epilepsy) and 10,000 in hospitals for the mentally subnormal—equally they are not there because of their epilepsy, but because they are mentally subnormal.

Now I come to the point that the noble Lord, Lord Brain, was raising. Recently discussions have been started in one Regional Hospital Board area which it is hoped will lead to the establishment of a special unit for epilepsy. This may become a reference centre for severe and problem cases and the focus for epilepsy in the region, from which advice may he given on the management of and the services available for any individual epileptic. It is hoped that a second unit may develop in another part of the country, but these discussions are in their early stages, so it would be wrong for me to say anything more about them officially. But if these two centres in due course prove successful, then they will provide a pattern for similar centres to develop elsewhere.

A number of epileptic people of course do not need hospital care but are not able to maintain themselves in the community, even with help, and residential care must be provided for them. For the most part, this is still given in colonies for epileptics which have existed since the 1880s. I had expected much more to be said about these colonies. I know that the British Epilepsy Association takes a great deal of interest in them. I have here a report of the Nuffield Provincial Hospitals Trust on problems of medical care with which I am sure the noble Lord, Lord Hastings, is familiar. In it is a very interesting survey of the population of these epileptic colonies, carried out by Dr. Kathleen Jones and another colleague at the request of the British Epilepsy Association. These colonies are very much out of the public eye. Besides the three local authority colonies, there are six colonies provided by voluntary organisations ranging in size from 480 residents to 37 in the smallest. Then there are St. David's at Edmonton and St. Faith's at Brentwood, to which the noble Lord, Lord Brain, made reference. The colonies, whether voluntary or municipal, cover wide catchment areas.

Those who remember the colonies in the old days, before modern drugs became available, will never underestimate the work they have done and now do. It was a tragic situation. With the coming of the new drugs which control the vast majority of cases of epilepsy, and the tranquillisers to help in the personality problems, the problems of these colonies have been reduced. But epilepsy has its severer manifestations often associated with personality changes, which make the work of running the colony a difficult and arduous one.

Because they are voluntary bodies, it is not easy for the Ministry of Health necessarily to carry them with them all the way. There were a number of recommendations of the Cohen Committee Report about these colonies which we hope we shall see implemented in due course. In 1961 they set up their own Epileptic Colonies Joint Consultative Committee, and this Committee keeps in touch with the Ministry to discuss ways in which their work can be improved. I am sure this was in itself a big step forward. In particular, it is desirable that the colonies should increasingly adopt a policy of rehabilitation, though one has to confess that there are many residents who, because of their age or other reasons, are unlikely to respond to a more vigorous policy. Some of them, for example, are patients who have severe physical disabilities following burns because they have fallen over and burned themselves, or they have had a stroke as well, and many of them are very "hospitalised" indeed. Nevertheless, in the colonies they are making efforts to introduce productive work as opposed to pure occupational therapy—for example, the making of concrete blocks and the making of chain fences—and the residents do a great deal of the normal work of the colony.

One of the results of keeping in touch with the Joint Consultative Committee is a closer contact between the colonies and the hospital service, which is highly desirable. In the long run it may well be that with improved methods of hospital and domiciliary treatment there will be some decrease in the number of cases who need residential care of the kind the colonies provide. I must say I hope that that will in due course be the situation. As local authorities develop their residential services for the handicapped there may be an increasing tendency to assimilate epileptics in hospitals or homes with other physically handicapped adults, so that the chances of their keeping in touch with the community may be increased. I am sure this is the right approach.

Most epileptic children can live at home and receive schooling or training in the ordinary way. Severe epilepsy may, however, stand in the way of ordinary measures, and residential school education may be essential. One of the most hopeful developments in this connection is that of schools run for severe epileptic children; and there I understand the average stay is about two years, which is really an encouraging sign that they achieve what they set out to achieve.

After the school years, most epileptic patients will enter employment. The work of the Ministry of Labour through its D.R.O.s cannot be too highly praised, as evidenced by the fact that the great majority of epileptics are working satisfactorily. A small number are also admitted to industrial rehabilitation units; and here I was very impressed with what the noble Lord, Lord Hastings, said about the problem of finding lodgings. I wish his lodgings bureau the greatest success, and I think it will be a splendid thing if they succeed in helping in that way.

Some epileptic people who can live at home need support and help in developing their lives. The social clubs, of which the British Epilepsy Association run 28, are of real value. It may also be desirable to try to fit epileptics into clubs provided by local authorities or voluntary bodies for the physically or mentally handicapped as well, again not to isolate them from the main stream.

The Minister of Health has recently been reviewing the present state of services for epilepsy and their development since the Report of the Cohen Committee. Though something has been achieved there is clearly room for further improvement, and he is going to seek fresh advice from his advisory committees to see what further guidance he can give to both the hospital services and the local authorities. There will then be many points of view to consider, and the Minister will not reach a decision until he has reviewed them all. He will certainly take into account all that has been said in this debate. In this important field of work it is clear that there is much scope for the understanding and hardworking help of voluntary bodies. The colonies, indeed, provide one example of that, and I hope that we may see the leaven of the British Epilepsy Association working thoughout the whole field of epilepsy, and not only in the colonies.


My Lords, I thitA the noble Lord has misundersta the position. We do work maisity outside the colonies, and not inside the colonies.


I realise that. I was hoping that his Association would continue to take an interest in the colonies and the, Welfare of those most severely handicapped by epilepsy. I simply finish by saying that we are really grateful to the noble Lord for having raised this question, and we hope that we may see great progress in this difficult field.