Epilepsia, 36(Suppl. 1):S4-S7, 1995 Raven Press, Ltd., New York 0 International League Against Epilepsy

The Institute of Epileptology of King’s College, University of London

Edward H. Reynolds

Institute of Epileptology and The Centre for Epilepsy, The Maudsley Hospital, London, U . K .

Summary: The Institute of Epileptology of King’s Col- lege, London has arisen from need and from opportunity. The need is due to the relative neglect nationally and internationally of the most common serious brain disor- der with important physical, psychological, and social complications. The relative neglect is reflected in ser- vices, research, charitable donations, public profile, and stigma and in a serious lack of professional education. The opportunity arose because of the existence in several medical institutions at Denmark Hill, London, of a group of medical and related colleagues with a special interest covering almost every aspect of this multidisciplinary dis- order who agreed to combine their expertise in this ini- tiative. The idea was born and developed in 1991-1992 and was supported by all the parent institutions: The

Maudsley and King’s College Hospitals, St Piers Ling- field, The Institute of Psychiatry, King’s College School of Medicine and Dentistry, and the School of Life, Basic Medical and Health Sciences, all under the umbrella of King’s College, University of London. Further stimulus and help came from a group of dedicated supporters in private and public life. There are three strands to this initiative: (a) a charity, The Fund for Epilepsy; (b) the clinical Centre for Epilepsy, which was formally opened at the Maudsley Hospital in July 1994; and (c) the aca- demic Institute of Epileptology for research and teaching, which was launched on November 15, 1994. Key Words: Epilepsy-England-London-Academies and insti- tutes-Research institutes-Health care delivery.

The launch of the world’s first university-based academic Institute of Epileptology is a milestone in a process that began with the registration of the Charity, The Fund for Epilepsy (No. 1015822) in December 1992, and was followed by the formal opening of the new clinical Centre for Epilepsy at the Maudsley Hospital, on July 12, 1994, by Mr. John Bowis, OBE, MP, Health Minister with Special Responsibility for Neurosciences, and whom I was very pleased to welcome back for the launch pro- ceedings. The Centre for Epilepsy provides a com- prehensive clinical service, regionally, nationally, and internationally, for children and adults with ep- ilepsy and related disorders, and the consequences of those disorders. The principal objectives of the Institute of Epileptology are to promote multidisci- plinary research and teaching programs regionally, nationally, and on a European-wide basis. The In- stitute of Epileptology is wholly dependent on the Fund for Epilepsy. The clinical Centre is a National Health Service facility, with some support from the Fund.

Address correspondence and reprint requests to Dr. E. H . Reynolds at The Centre for Epilepsy, The Maudsley Hospital, Denmark Hill, London SE 5 8AZ, U.K.

NEGLECT OF EPILEPSY

The Institute has arisen from neglect and from opportunity. Epilepsy, which is the commonest se- rious brain disorder in the world and also one of the most ancient in medical literature, recorded in de- tail in Babylonian times ( I ) , remains in our own century one of the most neglected of medical disor- ders. The evidence of neglect of epilepsy can be measured in terms of clinical services, research funding, charitable donations, professional and lay education, and social stigma. Even in our own rel- atively af€luent country, services for persons with epilepsy are woefully inadequate. The British Epi- lepsy Association has recently reported that there are only 13 epilepsy clinics in the whole of the United Kingdom, a country in which there are ap- proximately 350,000 people with active epilepsy. Most of these clinics are not multidisciplinary, and many are staffed, for example, only by a neurolo- gist, pediatrician, or neuropsychiatrist. In our own region of southeast England, there are 16 diabetes clinics but only one epilepsy clinic, although epi- lepsy and diabetes have similar prevalence and needs. It is widely recognized that surgical services for epilepsy in the United Kingdom are seriously

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deficient. Shorvon (2) calculated that in the United Kingdom we spend < f l per patient on medical re- search for epilepsy as compared, for example, with f140 for multiple sclerosis and i250 for muscular dystrophy, both much less common conditions. The Charities Aid Foundation (CAF) provides striking evidence of neglect, as reflected in charitable dona- tions. When I was a medical student, more than 30 years ago, the three medical conditions generally considered unmentionable by the public were can- cer, leprosy, and epilepsy, as is illustrated in Gra- ham Greene’s A Sort ofLife ( 3 ) . In 1992, El57 mil- lion were raised in charitable donations for cancer, which is now widely and openly discussed. Re- markably, leprosy raised f 9 million, as compared with just under f750,000 for epilepsy, even though there is not a single new case of leprosy in the United Kingdom and as many as 1 and a half million persons who will develop epilepsy at some time in their lives.

The reasons for the relative neglect of epilepsy are many and complex but have much to do with understandable fear and anxiety generated by sei- zures and the consequent historically deeply rooted social stigma attached to epilepsy discussed by both de Boer (4) and Wolf (5) in these proceedings. The neglect has been further fueled by a remarkable lack of professional and lay education, the need for which is discussed by Pedley (6), and is one of the main tasks of the new Institute of Epileptology.

OPPORTUNITY FOR AN INSTITUTE

The opportunity to establish a unique academic Institute for epilepsy with a university base arose because of the existence, in several closely related medical institutions in South London, of a group of medical and associated professional colleagues with a major interest and commitment to this disorder who agreed to combine their expertise in the devel- opment of the Fund, the clinical Centre, and the Institute. The parent institutions have all supported this initiative and include The Maudsley Hospital and its Institute of Psychiatry, King’s College Hos- pital, King’s College School of Medicine and Den- tistry and The School of Life, Basic Medical and Health Sciences, to which has been added St Piers Lingfield in Surrey, which was already linked to The Maudsley Hospital. Several of these institu- tions have a distinguished history of interest in ep- ilepsy. For example, the first Dean of King’s Col- lege Medical School was Robert Bentley Todd (1809-1860), immortalized in the widely known Todd’s paralysis. One of the earliest physicians at

King’s College Hospital was David Ferrier (1843- 1928), whose famous experiments on the electrical excitability of the cortex (earlier, but unsuccess- fully, attempted by Todd) helped lay the founda- tions of our modern understanding of the neuro- physiological basis of epilepsy. The Maudsley Hos- pital was one of the pioneering centers for epilepsy surgery after World War I1 (Murray Falconer, 1910-1977) and has long been a leading center for research into psychiatric aspects of epilepsy (7,8). Maudsley (1835-1918) himself was interested in the psychiatry of epilepsy. The Institute of Psychiatry was recently rated by Science Watch as the most effective research organization in the world. St Piers Lingfield has a century of tradition for excel- lent care and education, formerly of adults, but now of children, with severe epilepsy.

Although it was not anticipated at the beginning of this initiative, the process of increasing collabo- ration between the parent institutions has been fa- cilitated by recent reorganizations of health care in London, as a result of which these institutions have themselves come under the umbrella of King’s Col- lege, London, as was formerly the case only for King’s College School of Medicine and Dentistry and the School of Life, Basic Medical and Health Sciences. A further boost to our plans came in the summer of 1993 when a government-initiated Com- mittee (Peckham), reviewing research and develop- ment in specialized hospitals in the National Health Service, gave the epilepsy group at The Maudsley Hospital an alpha plus rating, i.e., of the highest international standards,

The integration of formerly scattered disciplines in different institutions has resulted in a comprehen- sive and multidisciplinary Center and Institute in- corporating neurology (Drs. E. H. Reynolds and R. D. C. Elwes), experimental neurology (Profes- sor B. Meldrum and Dr. A. Chapman), neurosur- gery (Mr. C. Polkey), neuropsychiatry (Drs. P. B. C. Fenwick and B. K. Toone), pediatrics (Professor E. Ross and Dr. F. Besag), clinical neu- rophysiology (Drs. C. Binnie and R. D. C. Elwes), neuroimaging (Drs. J. Dawson and T. Cox), neuro- pathology (Dr. I. Janota), neuropsychology (Dr. R. Moms), nursing and counselling (Mr. P. Pyke), and education (Drs. C. Binnie and F. Besag).

OBJECTIVES OF THE INSTITUTE

The broad objectives of the Institute are to:

1. Undertake and promote advanced basic, clinical and community/general practice-based research in epilepsy

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Undertake and promote teaching courses for medical and allied health professionals in the United Kingdom and throughout Europe Raise standards of treatment and care for per- sons with epilepsy nationally and internationally and to stimulate the development of other clini- cal centres in the United Kingdom and Europe Raise the profile of epilepsy and change social attitudes toward epilepsy through improved knowledge and education Collaborate with all other epilepsy associations and centres, nationally and internationally, in advancing understanding, awareness, and care for patients and their families everywhere

The integration and collaboration of the multiple disciplines that constitute the Institute has facili- tated the development of a 5-year research program which broadly includes the molecular basis of epi- leptogenesis, the pathophysiology of human epi- lepsy, new and more rational approaches to antiep- ileptic drug (AED) treatment, the early treatment of epilepsy and the prevention of chronic epilepsy, childhood epilepsy in the community, the neuropsy- chiatry of epilepsy, the neuropsychology of epi- lepsy, the surgery of epilepsy, the neuropathology of epilepsy, epilepsy and biotechnology , epilepsy and neuroimaging, and health care resources and epilepsy.

Because of the urgent need for professional edu- cation, the Institute is planning the world’s first de- gree course, an M.Sc. in epileptology of King’s Col- lege, London, beginning in October 1995, which will fill a major gap in the fight against epilepsy. The course will offer students from varied backgrounds (e.g., neurology, psychiatry, pediatrics, clinical neurophysiology, pharmacology, pharmacy, indus- try, nursing, social and psychological sciences) a broadly based understanding of all the disciplines central to the control and treatment of epilepsy and an overview of the neurobiological, clinical, and so- cial aspects of human epilepsy. The course may be undertaken on a full-time basis for 1 year or on a part-time basis for 2 years.

Brief educational courses of 1-3 or 5 days are also planned to provide either a general update of recent advances in epileptology or to address the needs of specific groups, e.g., general practitioners, special- ists in learning disorders, neurological and psychi- atric registrars, nurses, counsellors, and school- teachers. It is planned that specialized training packages will be developed for the pharmaceutical industry on the neurobiological and clinical aspects of epilepsy, AEDs and drug development and test- ing. Half-day and 1-day educational programs are

also planned for members of the public, people with epilepsy and their carers. These will be organized initially on a local basis but, if successful, will then be expanded to address a national audience.

STRUCTURE OF THE INSTITUTE

The Institute has a unique constitution linking it through a process of subsidiarity to its parent insti- tutions and to King’s College, London. It has a three-tier management structure. The management committee consists of the executive committee plus a representative from each of the parent institutions under an independent Chairman, Mr. Evan Stone, Q.C. The executive committee consists of the Di- rector, Dr. E. H. Reynolds (neurology), and Dr. C. Binnie (clinical neurophysiology and education), Professor B. Meldrum (basic science), and Profes- sor E. Ross (pediatrics and community medicine). All the clinical and scientific staff of the Institute sit on the medical and scientific advisory committee.

It is anticipated that the Centre and Institute will be closely related to the new Neurosciences Centre for the South Thames Region, which is also planned for the Denmark Hill site in the near future, prob- ably at King’s College Hospital.

Acknowledgment: The development in the last 3 years of this three-stage process, culminating in the launch of the Institute of Epileptology, could not have taken place without the support of very many people and institutions to whom I extend our gratitude. These include: The Rt. Hon. Mrs. Virginia Bottomley, MP, Secretary of State for Health; Mr. John Bowis, OBE MP, Health Minister with Special Responsibility for Neurosciences; Sir Donald Thompson, MP; Lord Tonypandy, former Speaker of the House of Commons; Lord Walton, President of the World Federation of Neurology; Professor Arthur Lucas, Principal of King’s College London; Mr. Evan Stone, QC, Chairman of the Institute Management Committee; the Deans of the Institute of Psychiatry, King’s College School of Medicine and Dentistry and the School of Life, Basic Medical & Health Sciences; the Chairmen and Chief Executives of The Maudsley Hospital, King’s Col- lege Hospital and St Piers Lingfield; Jane Sykes, Secre- tary of The Fund for Epilepsy; the Steering Committee; the Trust Fund Committee; the Institute Management Committee; the Executive Committee and the Medical and Scientific Advisory Committee; Frankie Bishopp, Centre coordinator, and her supporters Diana Dimney- MacPherson and Joan Armstrong; Epilepsy Associations in the United Kingdom, including the British Epilepsy Association, the Epilepsy Association of Scotland, and the National Society for Epilepsy; the Executive Com- mittees of the ILAE and IBE and the speakers at the launch Symposium; many donors large and small, espe- cially King Fah’d of Saudi Arabia and Marion Merrell Dow; and, finally, innumerable persons with epilepsy who have supported the Fund, the Centre, and the Insti- tute and for whose benefit they are directed.

REFERENCES

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Kinnier-Wilson JV, Reynolds EH. Translation and analysis of a cuneiform text forming part of a Babylonian treatise on epilepsy, Med Hist 1990;34: 185-98. Shorvon SD. The lack of funds for clinical epilepsy research in the UK. J R Coll Physicians (Lond) 1991;25:31-2. Greene G . A sort of life. London: The Bodley Head, 1971. de Boer H. Epilepsy and society. Epilepsia 1995;36(suppl 1): 8-11.

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Wolf P. Epilepsy in literature. Epilepsia 1995;36(suppl 1): 12- 17. Pedley T. Epilepsy and education. Epilepsia 1995;36(suppl 1): 18-22. Reynolds EH, Trimble MR, eds. Epilepsy and psychiatry. Edinburgh: Churchill Livingstone, 1981. Reynolds EH, Trimble MR, eds. The bridge between neu- rology and psychiatry. Edinburgh: Churchill Livingstone, 1989.

Epilepsia, Vol. 36, Suppl. I , 1995