Care Of Epileptics: The Reid Report 6.17 p.m. LORD HASTINGS rose to ask Her Majesty's Government whether they have come to any decisions as a result of the report of the Joint Sub-Committee of the Standing Medical Advisory Committee and the Advisory Committee on the Health and Welfare of Handicapped Persons entitled, People With Epilepsy. better known as the Reid Report; and when such recommendations as may have been accepted by Her Majesty's Government will be implemented. The noble Lord said: My Lords, I rise to ask Her Majesty's Government the question on the Order Paper in my name. To put it very briefly—because it is a rather long Question—it asks: what decisions have they come to about the Reid Report, and when are they going to implement those decisions? The last opportunity we had in your Lordships' House to discuss this subject in any detail was nearly six years ago, on April 6, 1965, when I asked the Government of the day, which was a Labour Government, whether they would consider the findings of the Cohen Report on the Medical Care of Epileptics which had been published nine years previously. Unfortunately, in the intervening time very little progress had been made, and it was therefore very necessary to raise the subject. I am glad to say that, after that, although six years have elapsed—and it seems rather a long time—quite a lot has happened. The Cohen Committee was reconvened and as a result, I think, a joint sub-committee was set up. This sub-committee, chaired by Dr. Reid, has published the report to which I am drawing your Lordships' attention to-day entitled, People with Epilepsy. One of the first things the sub-committee say in that report, in paragraph 14, is: "It should be added that, in our opinion, had the major recommendations of the Cohen Report been implemented, the services for people with epilepsy would by now be much more satisfactory than they in fact are, and our committee might not have proved necessary." This report was printed at the extreme end of 1969. I do not think it came into the hands of the British Epilepsy Association until January of 1970. That was the General Election year, so that it was difficult, either for the Government which in the event proved to be outgoing or for an incoming Government, until it had settled down, to do anything about it. In 1971 a great deal of work was done on this report. I know that my noble friend the Minister of State, who is to reply to this debate, has studied it very carefully, at great length and on many occasions. His Department have been in very close touch with the British Epilepsy Association. I should remind your Lordships that this is my particular interest; I am President of that Association and, at the moment, also its acting chairman. The Department has been in very close touch with us. They have appointed an official observer to our association, which is very helpful, and I know that they are in a position to tell us this evening what they are going to do about this report. I do not intend to make a long speech because it is a long report. I want to refer to only one or two of the principal recommendations which I feel should be having the Government's attention. One has only to turn to page 1, where the recommendations are set out, to see that there are in fact 56 of them. I want to mention numbers 2 to 5, which cover the question of "diagnosis and continuing care". The recommendations say: "Family doctors should be able to refer patients with epilepsy for full investigation and assessment by a multi-disciplinary team, which should include consultants, a social worker, a clinical psychologist and, in certain cases, local authority staff and a Disablement Resettlement Officer. "Such teams should operate at most general hospitals and at all hospitals which have neurological and neurosurgical units. "Epilepsy clinics should be established at district general hospitals as parts of relevant departments. "Following diagnosis and initial assessment, a person with epilepsy should remain under the continuing surveillance of his family doctor and community team. Hospital medical staff should also frequently be involved in this process of aftercare." Recommendation No. 11 states: "People with epilepsy who require welfare services "— and of course they do, very much so— "should receive them within the general framework of facilities for the handicapped. Nevertheless, in order that progress can be assessed, people whose primary disability is epilepsy should be separately identified for statistical and research purposes within the registers of the general classes of the handicapped kept by local authorities." I mention that last recommendation because it has a very close bearing, of course, on the Chronically Sick and Disabled Persons Act, which I hope is being put into force gradually and which is causing continuous scrutiny in both Houses of Parliament to ensure that that work which we did, I think so admirably, not so long ago is going ahead. The only other recommendations that I want the attention of my noble friend Lord Aberdare directed to deal with special centres: recommendations 26 to 29. The report says: "Special centres should he provided for those people with epilepsy whose management presents particular problems, and such centres should have two components, the first being a hospital neurological and neurosurgical unit, and the second a residential unit with facilities for carrying out assessments under everyday living and working conditions. Such centres could be provided by the grouping of appropriate existing facilities. "As an initial step, some five or six such units should be established in England and Wales on a supra-regional basis. "The special units should form focal points for research and for professional and general teaching about epilepsy. "Regional Hospital Boards, acting in consultation with Boards of Governors and relevant local authorities, voluntary bodies and government departments, should review the facilities within their regions in order to decide where and how special units should be established." Recommendation 29 which I have just read out about Regional Hospital Boards brings me to a remark in our previous debate in 1965, made by the late noble Lord, Lord Brain, who was a great friend of the British Epilepsy Association and is greatly missed. He asked why nothing substantial had been done in the nine years following the Cohen Report. He then said: "It is one of the principles of the Health Service to delegate as much responsibility as possible to the Regional Hospital Boards, boards 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."—[OFFICIAL REPORT, 6/4/65; col. 36 and 37.] I thought I would reproduce that quotation because I am very hopeful that my noble friend Lord Aberdare and his right honourable friend the Secretary of State will take the personal responsibility involved and will not just leave it to the reorganised National Health Service. Of course, Regional Hospital Boards are going to disappear and there is going to be a new two-tier system, with Regional Health Authorities, who will be responsible for the general planning of the National Health Service, including the special services and also university medical teaching and research; and then the second tier, which is really the operational one—the area health authorities—who will be responsible for organising and administering comprehensive health services and integrating the health services in the districts served by separate district general hospitals. What I want to ask the noble Lord is whether at the lower end the special epilepsy clinics which the Reid Report recommends should be established at district general hospitals, will in fact be established in these hospitals; and whether at the other end, at the higher level, the special centres, including the residential unit, will eventually be established on a supra-regional basis—presumably about one to each two Regional Health Authorities. I understand there will be 14 of them. It seems to me that, with the reorganisation of the National Health Service, these recommendations are really basic—there are many others but these are basic—to the whole report if there is going to be real progress made in the problem of epilepsy, its prevention, diagnosis, treatment, cure and rehabilitation. Are these matters going to be dealt with within the new reorganisation of the Health Service, and, if so, how? My Question did not in fact ask how, but when, the recommendations will be implemented. When they will be implemented of course depends very much on the method that is going to be used, and this means "How?" as well as "When?" The last comment I have on this aspect of the matter is in reference to another extremely interesting little book—it is a red one in this case, not blue—called Better Services for the Mentally Handicapped, published by the noble Lord's Department last June. It is Cmnd. 4683. This also refers to the multi-disciplinary approach in regard to comprehensive assessment. Whereas the Reid Report, in paragraph 52, says in detail: "We consider that the problems of epilepsy call for careful initial assessment and that this should be done by a multi-disciplinary team consisting of one or more consultants who may be drawn from the ranks of general physicians, paediatricians, psychiatrists, neurologists, neurophysiologists or neurosurgeons, according to individual circumstances; a social worker; and a clinical psychologist. In most cases the local authority could make a useful contribution to the team through appropriate members of its social work, health visiting. medical and educational staff. In some cases the Disablement Resettlement Officer will have a vital role to play", the pamphlet on services for the mentally handicapped says: "… a comprehensive assessment of the nature of the handicap or handicaps, and of the needs and problems of the handicapped person and his family, is required. Medical. educational, psychological and social aspects should be considered together, as appropriate to the age of the child." Then, over the page, in a rather significant paragraph, No. 136, it is stated: "Effective co-ordination is essential. Methods of achieving it need further study. The Department of Health and Social Security hopes to issue guidance on this in relation to the comprehensive assessment of persons with any form of handicap or disability." I underline those last words—"with any form of handicap or disability". So it occurred to me that the noble Lord and my right honourable friend may be considering these multi-disciplinary teams in connection with not only epilepsy but also mental handicap and other forms of disability. I would not be so presumptuous as to claim special facilities limited exclusively to people who suffer from epilepsy, because there are so many other deserving disabilities, but it does seem reasonable that the Government and the National Health Service should be asked to organise and run thoroughly efficient multi-disciplinary teams suitable for dealing with any handicap, some members of the teams dealing with mental handicaps, others with epilepsy and others with other forms of disability. It seems to me that these two reports, taken together with the National Health Service reorganisation, could tie up if the Government have the will and find the means to do it. I want only to add that of course there are many other recommendations dealing with public attitudes and with employment and accommodation. These are very much the problems with which the British Epilepsy Association is doing its best to deal. There is a recommendation in the Reid Report that the Government should help the British Epilepsy Association with central funds. I do not think I need say any more about that. We were most grateful for that form of assistance last year, at the last moment, and I hope it will be forthcoming again. We have been in close touch with the Department about this matter. I might add that it was not my main purpose to-night to come here and ask for money —that is a subsidiary purpose. The main purpose is to make sure that this is a much more hopeful and happy occasion than it was when I raised the subject some six years ago, and to congratulate in advance (if that be a safe thing to do) my noble friend Lord Aberdare who is going to give us the hope we are looking for to carry forward the work which affects 250,000 sufferers and over a million people among their families. These numbers are not decreasing. Therefore I hope that my noble friend will have some useful announcements to make. Before I sit clown I should like to thank the noble Baroness, Lady Serota, who is going to support me, for speaking in this little debate. I am most grateful to her. 6.33 p.m. BARONESS SEROTA My Lords, I am quite sure that all those who are concerned with the present medical and social and educational services and their progressive development will be most grateful to the noble Lord, Lord Hastings, for putting down this Question to-night, and also for his clear presentation of the issues involved in implementing the principal recommendations of the report of the distinguished joint sub-committee under the chairmanship of Dr. Reid. The noble Lord also set it in its current and future context with admirable skill and pointed out that these matters will need to be considered against the reorganisation of the National Health Service in 1974 and also in the light of current Government policy in regard to improving services for the handicapped. I think there is now clearly—and some of us would say, at last—a widely recognised and accepted need to improve all aspects of the care and treatment of people with epilepsy through a range of multi-disciplinary measures and services including not least the much greater activity to increase the level of public understanding and acceptance of the nature of their problems. Therefore I will not detain the House at this somewhat late hour except to express my strong support and also, I am sure, the support of all noble Lords present in the Chamber to-night. for the plea made by the noble Lord, Lord Hastings, for Government action and leadership in implementing the report if it is not to suffer the same sad fate of the Report of the Committee on the Medical Care of Epileptics which our noble colleague Lord Cohen of Birkenhead presented in 1956. Like the noble Lord, Lord Hastings, I too believe that there is good reason to hope that his plea will be falling on more sympathetic ears to-night. Those noble Lords who follow health and social matters closely will no doubt recall that towards the end of a Statement made by the Secretary of State in another place on November 22, and repeated here with his usual courtesy by the noble Lord, Lord Aberdare, it was stated that some of the additional £180 million that the Government were able to find to improve the health and social services within the next four years would in fact be used to provide more services for people with epilepsy. This I welcomed specifically at that time. Therefore I will simply confine myself to-night to asking the noble Lord, Lord Aberdare, how large is the sum, and also which specific recommendations of the Reid Report the Government now intend to implement. Finally, my Lords, perhaps I can say a little more forcefully than the noble Lord, Lord Hastings, speaking in his dual role as President and acting Chairman of the British Epilepsy Association, that I very much hope that the Government will continue to recognise and to assist the pioneering work of that Association by giving it increased financial support (if that is possible) in the coming year from central Government funds, as recommended by the Reid Committee, so that it may not only sustain but also develop and extend the work it is now doing. 6.37 p.m. LORD SEGAL My Lords, I also endorse the comment of the noble Lord, Lord Hastings, that this debate is long overdue. It is particularly valuable in that it draws attention to the importance of this excellent report by the sub-committee under the chairmanship of Dr. Reid. The report is of great value in stressing the importance of team work: not only team work in the medical field but also in social welfare and in employment and integration into the life of the community. Epileptics need further provision of sheltered employment and rather greater facilities for training. Equally important is the very great change that has occurred since the last debate took place in the public attitude towards this problem, especially in the removal of any suspicion of stigma attaching to epilepsy, and the need for acceptance, partly through the active encouragement of the family doctor, of the position of the epileptic among his family, his friends and his immediate environment. It is also important to recognise the position of epileptics as fully handicapped persons entitled in every sense to the benefits of the provisions of the Disabled Persons Act. In fact, to some extent the provisions for epileptics can provide a real test of the efficient working of this Act. It is recognised, as I have said, that the public attitude to this problem has been changing enormously. We are able to record the selection of a British runner to compete in the Olympic Games in 1968; and how valuable this was in drawing public attention to the potentialities of a certain group of epileptic patients! The question of issuing provisional driving licences is one to which I think the Minister might direct the attention of his colleagues in another Department. With due safeguards, epileptics granted provisional driving licences could be less of a hazard on the roads than many learner drivers; and the grant of licences could have an important therapeutic influence in steadying an epileptic patient and helping him to gain some degree of self-confidence. My Lords, after all the years of work and the important advances in the medical field, it would be unthinkable if this valuable report were now to be lightly set aside. We look hopefully to the Government to implement its recommedations. And especially, if I may say so, I would put in a plea for support of the British Epilepsy Association by the provision of additional Government funds. I make this plea all the more readily as a result of my association with a society which has never made any claims upon Government assistance in the matter of funds, a parents' association which has always taken a pride in being entirely self-supporting. That is why I believe that the claims of the British Epilepsy Association, which is in no way similarly placed, ought to have a special call on the Government's generosity. We hope that when the Government's statement is made it will mark a really notable step forward in its provision for the welfare of the victims of this tragic social scourge. In many ways this is, in my view, a far more hopeful field than the field of mental retardation, which involves to some extent an acceptance of mental handicap. In the field of epilepsy, this condition could, with proper treatment and care, steadily improve, and that is why so many of us are particularly anxious that the Government should implement the recommendations of this excellent report. 6.43 p.m. LORD ABERDARE My Lords, I am most grateful to my noble friend Lord Hastings for having asked this Question this afternoon and for giving us the opportunity for a short debate on a specialised but nevertheless very important sector of the Health Services, trying to help people with epilepsy. I know that my noble friend spoke with a heavy cold, which may have affected his clarity of diction, but it certainly did not affect his clarity of thought. His great interest in the subject and the valuable work he does with the British Epilepsy Association, of which he is now president and, as he told us, acting chairman, is very well known to all your Lordships and to my Department, and I was glad to know that in his opinion my Department was giving him such valuable support. I am also very grateful for what was said by the noble Baroness, Lady Serota, in support of my noble friend's Question and for the remarks that fell from the noble Lord, Lord Segal. May I take this opportunity to congratulate Dr. Reid and his colleagues on the joint sub-committee of the Standing Medical Advisory Committee, and the Advisory Committee on the Health and Welfare of Handicapped Persons on this most comprehensive and very useful report. It followed in the wake of two previous reports, one relating to the welfare of people with epilepsy and the other to their medical care; and it frankly acknowledges the debt to the work of those two committees. The medical report published in 1956 was the work of a committee under the chairmanship of Professor Sir Henry Cohen, now Lord Cohen of Birkenhead. I know that the noble Lord intended to take part in this debate, as he did on the last occasion, but unfortunately he is ill and unable to be here. If he reads Hansard, he will see that he has our best wishes for a very speedy recovery. My Lords, the Government accept the validity of the main theme of the report, that many of the problems encountered with epilepsy are not inherent in the illness but are caused by prejudice, and that with modern treatment and care provided from the onset of symptoms nearly all those who develop epilepsy can live ordinary lives in the community. We accept also the scale of the problem outlined in the report, that there may be up to 300,000 sufferers from epilepsy in England and Wales, with 33,000 new cases every year, and we would agree that the health and social services available for them stand in need of improvement and co-ordination. The Government have initiated certain actions to this end, as I hope to explain in due course. Altogether the report contains 56 recommendations. Many of them mainly concern local authorities, professional bodies and voluntary organisations, and they are not, therefore, the direct responsibility of the central Departments. There are also a number of recommendations which concern the medical treatment of patients and their management in hospital, but these are matters for individual clinicians responsible for treating epilepsy. My Department has already invited the views of local authorities, professional and voluntary organisations and hospital authorities on the report, and we intend to hold a national conference next July to provide a forum for these bodies to exchange views on the medical treatment and social care of people with epilepsy. I hope that this conference, which will use the report as a basis for its discussions, will encourage considerable improvement in the services for people with epilepsy. As my noble friend emphasised, many of the joint sub-committee's recommendations underline the need for better coordination of available services. In the long term this will be greatly improved by the reorganisation of local authority personal social services which has already taken place, and by the reorganisation of the National Health Service, planned for 1974. But better local co-ordination of services must not await reorganisation. We have asked Regional Hospital Boards to organise regional meetings which will include representatives of hospital doctors. social workers, general practitioners, local authority health, education and social services departments, disablement resettlement officers, industrial medical officers and others interested in epilepsy. These meetings are to discuss the report and to consider how its recommendations can best be implemented locally, and we hope that by bringing together representatives of the professions concerned we shall achieve improved collaboration in the future. I hope that my noble friend will think that these regional conferences will go some way to answer the complaints that were brought up on the last occasion by the noble Lord, Lord Brain, in achieving regional action on these matters. I now come to the recommendations in the report on which the Government have themselves been able to take action. The report recommended that the British Epilepsy Association should receive a contribution from central funds in order to expand its educational activities and, as my noble friend has said, in 1970–71 we made a grant to the Association of £10,000. I am glad to be able to tell him that a similar grant will be made in the current financial year. This grant is given for activities other than health education, which is the responsibility of the Health Education Council, but we recognise the Association's good work in furthering understanding of the problems posed by epilepsy, and I hope that the financial stability thereby provided will enable it to continue to do this. The report recommended that epilepsy should no longer be a ground for annulment of marriage. Under the Nullity of Marriage Act 1971 epilepsy ceased to be a ground for nullity in the case of future marriages. The report also recommended that disablement resettlement officers should receive more specific instructions about the functions of social workers and the contribution they can make towards solving employment problems. This recommendation, too, has been implemented, as has the recommendation that full reports should go back from industrial rehabilitation units to the referring medical agencies. Most of your Lordships who have spoken referred to the recommendation about special centres: that these should be provided for those people whose management presents particular problems, and who need not only the specialised services of a hospital neurological and neurosurgical unit but also medium or long-term residential care under special conditions. Although the recommendation suggested that five or six such units should be established in England and Wales, the main text of the report stated that it would be difficult to tell how many would be required, and that in view of the importance of early experiment they should be established on a basis of existing facilities. We have decided to establish as a pilot scheme, which will be evaluated over a five-year period, two experimental centres for adults and one for children. The adult centres are to be at the Chalfont Centre for Epilepsy, in association with the National Hospital for Nervous Diseases, and at the Naburn and Bootham Park Hospital, York; and the centre for children will be at the Park Hospital, Oxford. Only a comparatively small number of patients can be treated at these centres—the initial capacity will be 65 adults and 12 children, although the adult capacity may be increased during the five-year period—but we intend that these centres shall also become focal points for teaching and research. We hope too that they will, in the words of the report, "act as catalysts in raising the standard, care and interests throughout the area where they serve ". The noble Baroness asked me about money. I can tell her that the project will cost over half a million pounds over the five years, and at the end of this period we hope to be able to determine the value of such centres, both for treatment and for teaching and research, and then decide how many centres are needed altogether and where they should be located. I hope that this last sentence will satisfy my noble friend, who asked me how these special centres would fare when we come to the reorganisation of the Health Service. They will remain in being for the next five years at these three centres, and we shall then be able to evaluate their work and decide how many are required in the long run. My noble friend also asked me especially about the provision of separate epilepsy clinics. I fully accept the need for a multi-disciplinary approach, of which the noble Lord, Lord Segal, spoke, but professional opinion is by no means unanimous that separate epilepsy clinics are appropriate. This is one of the topics that is likely to be discussed at the national conference. My Lords, I have outlined the action which the Government are taking to effect improvements in the light of the report and the financial support we are giving. But we see this improvement as a continuing process, and in considering what further measures might be taken the Government will take account of the views and suggestions that have been made by noble Lords in the course of this debate, the comments of the bodies that have been consulted and the views that emerge from the conference I have mentioned. We also have in mind the conclusions of the Office of Health Economics paper, Epilepsy in Society. One of the greatest barriers to people with epilepsy living happy and normal lives is the public attitude to epilepsy. I endorse the recommendations of the report that both public and private bodies and employers should review restrictions on people with epilepsy, and ensure that any that are necessary in the light of modern knowledge are abandoned. I hope, too, that those whose views help to mould public opinion will use their influence to counter prejudice against people with epilepsy. In this task the British Epilepsy Association, under the presidency and acting chairmanship of my noble friend Lord Hastings well deserves our support.