Epilepsy services What people need, what they want, what they get
T. Betts NeuropsychiatricClinic Universityof Birmingham
Introduction Apart from migraine, epilepsy is the most common brain disorder to affect mankind. In addition to the 2 - 3 % of people who in their life time will be directly touched by it, many more people wiU be indirectly touched by it in terms of having a child, relative or an intimate companion who has the condition. Many must, therefore, learn to live with the condition and to cope with it, and will seek help for it. There is a physical burden to having epilepsy. Accidents can happen in seizures resulting in head injury, fractures or severe bums and, occasionally, death. There are also severe psychological consequences to having epilepsy. A chronic fear of seizures can exist both in the person who has the condition and in that persons family and peer group, so that the individual with epilepsy becomes constrained by either his own or other peoples fear to become grossly over protected and hedged round with many unnecessary restrictions on social, recreational and work activities. Epilepsy frightens people and therefore those who have the condition tend to become stigmatised or rejected and unpleasant attributes are falsely prqjected on to them. Until comparatively recently, epilepsy was difficult to treat, and the necessary medication had unpleasant shortterm and long-term side effects. Until recently, also, a somewhat cavalier attitude was taken towards the diagnosis of epilepsy, so that many people who did not actually have the condition were labelled as having it, and people who did have it were labelled as having something else. Now it has been recognised that there is not only a Address: T. Betts NeuropsychiatryClinic Queen Elizabeth Psychiatric Hospital MindelsohnWay Birmingham, B15 2QZ U.K.
need for accurate diagnosis but there is also a need also for early diagnosis and treatment as the prognosis for epilepsy is much better if attacks can be swiftly brought under control. It also has to be recognised that successful control of seizures (usually with medication) will not in itself resolve other problems that may exist with the epilepsy, relating both to the psychological handicaps brought about by the condition and also any associated physical or mental handicaps that co-exist with it. A mentally handicapped child with epilepsy for instance needs to lose his seizures if at all possible (if he does not pay too high a price for seizure control in terms of drug side effects). This control of seizures will aid his rehabilitation but will not restore his intelligence and he will still need other services. Full control of seizures may also do little for any associated behaviour problems. Although epilepsy can be seen as a condition in which medical imput is necessary for seizure control, it is not just a medical condition: social and psychological treatments must also be offered to a large proportion of people with epilepsy and their families. This is becoming increasingly recognised. What is also becoming increasingly recognised is that services for people with epilepsy are patchy, inconsistent and usually fall short of an ideal service. As with many other chronic conditions (particularly those that are stigmatised or misunderstood) the patients voice has become more important. Throughout the world patient groups have developed or are developing, which seek to address the social stigma of epilepsy and are starting to press for better services. Self advocacy for people with epilepsy and self empowerment are becoming important movements. The development of new imaging techniques, new medication, better surgical techniques, and better understanding of the chemistry of epilepsy has led to an increasing interest in the condition amongst doctors, both
Betts in specialist services (neurology, paediatrics, mental handicap and psychiatry), and also in primary health care. f i s interest has perhaps been deepened by the introduction of audit’ into many western health care systems, so that for the frst time the questions are being asked: “What is the best health care system for people with epilepsy?” “What are the health care needs of people with epilepsy?”
Health care needs “Need” is what people could benefit from and not necessarily what they ask for. There are three aspects to the “need” for health care that must not to be confused. “Need” is what people could benefit from, “demand” is what they ask for (or what they are told to ask for) and supply is what is actually provided. What is supplied may not be used (perhaps because of poor publicity or lack of knowledge of a service to referring agencies) and some services may be supplied to meet demand but not need and sometimes a provided and needed service is not used or used inefficiently because of reluctance on the part of the people who could potentially use it. An attempt to increase this desirable state of affairs will be difficult if we do not know what service is actually being provided, or what the need actually is (or even what the demand is) particularly if we have little knowledge of the epidemiology of the condition in question and do not have an accurate knowledge of its morbidity, mortality and associated handicaps, and its ability to respond to any treatment offered. Medical care is becoming increasingly expensive. In all the countries of the western world, whether we like it or not, some attempt will be needed to try to rationalise services and to seek value for money. Those of us working and living with epilepsy will wish for the best health care going: if we are to achieve this and also achieve the co-operation of governments and administrative services that will provide the health care, we need to develop a much clearer view of what the needs for health care for people with epilepsy actually are. (1) Health care needs and epilepsy About fifty new cases of epilepsy occur each year in each 100,000 members of the population however, during the frst two decades of life the yearly seizure incidence is even higher. Approximately an equal number of young children have febrile seizures each year, but most of these do not recur. This is the incidence of the condition which means the number of new cases per 100,000 inhabitants per year. The prevalence of epilepsy is about 6 to 7 people per every thousand of the population (the word prevalence means the number of people in the population who have a condition at a particular point in time). The life time prevalence of epilepsy (the number of people in the population who have
ever suffered From the condition) has not been well estimated, but is around 3%, if one excludes febrile convulsions. The incidence of epilepsy is commonest in young children and in the elderly. After childhood the prevalence of epilepsy does not change much, presumably because some people are moving out of prevalence having lost the condition, others are moving in, having gained it. Most people who develop epilepsy will stop having seizures within two years of the onset of the condition. Most will have responded to medication, a few will have resolved spontaneously and in a very few the cause of the seizures will have been recognised and treated (eg, cerebral tumours). Between 20-30% of people who start epilepsy will not have lost their seizures after two years. Many of these have additional handicaps, either physical or mental, or have social or psychological problems which make medical care difficult. Since the prognosis of epilepsy has only recently become as good as this, there is still within the population a large number of people who, had they developed epilepsy now, might have gained control but did not do so with the methods of treatment available when they did develop it. Many of these patients will have had epilepsy for many years: some would probably respond to newer methods of treatment (like new drugs or surgery) but may not be currently involved with medical services, and are therefore unaware that better help is available. There exists, therefore, three groups of people with epilepsy. This fEst group, the most numerous, are those who develop epilepsy with no coincidental handicap and who will reach full seizure control swiftly, providing they are treated. They may still suffer from the social and psychological handicaps of epilepsy. The second group are those people who have had epilepsy for a long time, which has not come under control and who may well have some of the social stigmata and psychological problems of chronic epilepsy, but are not otherwise handicapped. The third group are those patients with epilepsy who have additional handicaps which often make the management of the epilepsy difficult or impossible (such as mental handicap). Although the prognosis for the control of seizures is much better than it used to be, perhaps as many as 50% of people with epilepsy requiring regular medical attention (or 30% of all identified patients with epilepsy) have behavioural problems of various kinds associated with epilepsy (2). Some of these patients will have significant psychiatric morbidity and others will be mentally handicapped. The prevalence of epilepsy in the severely mentally handicapped is high. Many patients with epilepsy therefore, in addition to any medical intervention needed to control seizures, will need other services, or will place a demand upon those services if their needs cannot be met. The true morbidity of epilepsy is unknown, as is the mortality rate. Minor morbidity in patients who have frequent seizures is probably considerable in terms of cuts that require suturing fractured bones, in-patient
Epilepsy Services observation because of head injury, bums etc. (3). The incidence and prevalence of severe morbidity in people with epilepsy directly related to the epilepsy is unknown. A number of patients receive severe bums or head injury as a result of seizures, and it is possible that repeated head injuries in some patients with severe epilepsy eventually leads to cognitive impairment as may severe status epilepticus. It is known that the mortality rate amongst people with epilepsy is at least twice that of an equivalent non epileptic population. This increase in mortality seems to be particularly high in the first ten years after the diagnosis. A few such deaths may be due to treatment itself (either after surgery or due to untoward reactions to antiepileptic drugs (AED) or due to the underlying cause of the epilepsy. Some deaths are directly related to seizures (ie, drowning in the bath) or to status epilepticus. Accidents as a result of a seizure (such as being run over or falling and sustaining a fatal injury) also occur and suicide is known to be much more common in people with epilepsy than would be expected by chance. The reasons for this are undoubtedly multifactorial (including ready access to powerful poisons, social factors and depressive illness). In recent years it has also been recognised that some people with epilepsy die suddenly and unexpectedly but not in relation to seizures: this seems commonest in young adults, particularly males and is as yet unexplained. Patients with severe epilepsy that cannot be controlled therefore need an assessment of risk: the degree of this risk will obviously depend on the type of epilepsy that the person has: any necessary intervention and need for supervision should be as non restrictive and as unobtrusive as possible. Some people may need help to adjust to their environment and will benefit from the provision of special safety aids, if morbidity and mortality are to be reduced. It should be remembered, however, that the majority of people with epilepsy are not at great risk from their seizures and should lead as unrestricted a life as possible and that decisions about restrictions, the amount of risk a person can tolerate and the amount of supervision needed must be based on an individual assessment of the patient: blanket rules and restrictions should not be applied. One restriction which is universally placed on people with active epilepsy is a prohibition of driving. In a patient with active epilepsy this is obviously reasonable. Indeed first seizures occurring in people who are driving at the time may be responsible for accidents (these are obviously impossible to prevent). The resmction on driving should however be a reasonable one, so that the patient knows that after a stated period of time providing he has no further seizures he can drive again and that a sympathetic individual assessment of his case will be made by the authorities. If rules against driving are too restrictive, patients will be tempted to ignore them and patient cooperation with driving regulations will fail. This
cooperation must be preserved particularly as the onus of reporting epilepsy to the Driving Licence Authorities at the moment is on the patient. Most medical authorities agree that patients who develop seizures should be assessed by a hospital based service with access to full diagnostic facilities. Ideally they should be assessed by a physician who has wide experience of epilepsy and who recognises that the diagnosis of epilepsy is sometimes difficult and requires time, but who also recognises that once the diagnosis of epilepsy is made with reasonable certainty and the epilepsy has shown a conspicuous tendency to continue, then there is a need for a rapid treatment of the seizures with the appropriate medication in order to get them under control as quickly as possible and therefore improve the prognosis. Since the future management of the patient will be determined to some extent by any existing handicaps essential psychological and psychiatric assessment should be carried out at the same time plus full neurological diagnostic assessment. To achieve control some patients will need repeated visits for antiepileptic serum level monitoring and possibly a change in medication if the originally chosen drug does not work. To ensure compliance and to minimise the secondary handicaps of epilepsy, the patient and his family should be educated about epilepsy. By the end of two years the majority of patients will have achieved seizure control and can be returned to the supervision of their primary health care team, with some decision made about how long the patient should continue to take his antiepileptic medication. This will of course depend on the nature of the epilepsy and on other factors (including whether or not the patient wishes to regain his driving licence). The decision whether to withdraw drugs or not remains a question of fine clinical judgement. Those patients who do not achieve seizure control will need careful re-assessment after two years. It is assumed by that time that they will have had a ma1 of the full range of convential AED's and will have been assessed for possible surgery (4). Once the best has been done for the patient perhaps he should return to primary care with a proviso that he be reviewed from time to time by the hospital services for any necessary re-investigation or introduction to new therapies. Whether a patient continues under the care of the hospital services or continues under the care of the primary health team, it should be f d y established who the doctor is who is primarily responsible for the care of the patient. If the patient is being reviewed in hospital, as far as possible, the patient should see the same doctor each time, and not a succession of different junior doctors who have to grapple with the patients increasingly expanding notes. The aim of therapy should be complete seizure control if possible, providing this is cornpatable with a reasonable quality of life. Quality of life measures are being developed for people with epilepsy: they relate to a certain extent to
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Betts seizure frequency and severity but also to the adjustment of the patient to his illness and his psychological well being and restrictions on activity. If the patient is being managed in primary care he should be actively reviewed from time to time and his care should be subjected to audit, so that he does not become neglected and forgotten, merely receiving repeat prescriptions and being cut off from advances in epilepsy care. The primary care of epilepsy therefore needs good communication between specialist services and the primary care physician, and a good dissemination of knowledge about recent advances in epilepsy. This will be facilitated by good information systems for people with epilepsy and their families, developed by lay epilepsy organisations so that the people with the condition are also kept abreast of developments, and can enquire about them. A recent survey of members of the British Epilepsy Association (5) suggested that the majority of patients with chronic epilepsy in the United Kingdom are managed by their general practitioners. Main complaints related to lack of communication between the patient and the doctor looking after him and lack of information about new treatments that are available (patients also felt that they were left too much to their own devices in terms of adjustment of medication). In a group of one million people there will be approximately 500 new cases of epilepsy occurring every year (500 new cases of febrile convulsions will also occur, although most of these will not recur). In the population of one million people there will be about 5000 active cases of epilepsy, that is patients either still having seizures or still under treatment although their seizures have ceased. In the United Kingdom there will be approximately 465 general practitioners to that million patients, which means that each general practitioner will have approximately 11 patients with epilepsy on his books (although not all of them may be known to him) and about one patient a year in his practice will develop epilepsy. It is likely that the general practitioner will be responsible for most of the primary care of the patients with chronic epilepsy on his list and will almost certainly be prescribing for them. The hospital facilities available to the general practitioner to refer to, will vary widely within the country, but on average for one million patients there will be 11 paediatricians available in the United Kingdom, who, between them will need to deal with 500 fresh febrile convulsions a year if, as most of them are, they are referred to hospital, and perhaps a third to a half of the new cases of epilepsy. There are about three consultants in mental handicap to every million people in this country and some of the more handicapped members of the chronic population will be managed by them and fresh cases of epilepsy will arise within the population already managed by them. There will be perhaps a couple of neurosurgeons to that million patients: but most of them do not specialize
in the surgical treatment of epilepsy. One million people in the United Kingdom are served by up to three neurologists, so that unless the neurologists specialize full time in the management of epilepsy, it is likely that they can only deal with a small fraction of patients referred with new seizures and with chronic epilepsy. Since there is likely to be only one consultant neurophysiologist to a million patients, whose skills will be needed in may other neurological and medical conditions as well as epilepsy, the provision of appropriate neurophysiological facilities may be inadequate to meet the needs of people both developing epilepsy and those who need intensive investigation because their epilepsy is not under control. The provision of radiological services within the United Kingdom is also patchy: there may well be a deficiency of CT facilities in some areas for those patients (using careful clinical criteria) who need CT examination. There will almost certainly be a deficiency of Magnetic Resonance Imaging facilities, although MRI is thought by many to be a better imaging technique for patients with possible symptomatic epilepsy. Other scanning facilities including PET and SPECT may have a place in the management of epilepsy, particularly in those patients undergoing surgical evaluation, although the place of these is not as yet fully evaluated or determined. Apart from research institutions, such facilities are almost non existent in the United Kingdom. A population of one million is likely to be served by 20 general consultant physicians and by approximately the same number of psychiatrists. Many general physicians see newly diaflosed patients with epilepsy who are presented to them as an emergency, but with some exceptions, general physicians may not be well versed in the management of chronic epilepsy: the number of patients who are routinely managed by general physicians is not known. In the United Kingdom psychiatrists have little interest or expertise in epilepsy, even though mental illness of all kinds is commoner in people with epilepsy than would be expected by chance and people with epilepsy are over represented in new admissions to mental hospitals and also in the chronic population in those hospitals. Very few British psychiatrists specialize in the management of epilepsy (if they do they often call themselves “neuropsychiatrists”), in other countries the proportion of psychiatrists having expertise in epilepsy may be higher. Historical reasons in the United Kingdom have given rise to the split between neurology and psychiatry, with resulting detriment to both disciplines. Special clinics for epilepsy in the United Kingdom are rare and serve only a very limited number of people with epilepsy, tending to concentrate on those people whose epilepsy is either severe and intractable or who have other handicaps. The majority of people with epilepsy in the United Kingdom are not reached by such specialist services.
Epilepsy Services
Future developments In the United Kingdom, services for people with epilepsy are inadequate and patchy: many people with epilepsy who need, and would benefit from, specialized care are denied it because of lack of provision. The development of a “market economy” for the provision of health case in the United Kingdom may make the situation worse as those institutions who do not attract patients will wither. A market economy, however, also has potential for developing better services, providing that purchasers of such services recognise that a better service is needed and that it will actually carry economic benefits to the population that it serves (by reducing morbidity and mortality and helping people to stay in, or obtain, jobs). This is why better estimates of the morbidity and mortality of epilepsy and the benefits to be gained from rapid seizure control need to be researched and spelt out. The medical needs for people with epilepsy are a rapid referral of patients developing seizures to a centre where there is expertise both in making a clinical diagnosis of epilepsy and applying the necessary investigations quickly, and then supplying the best treatment as rapidly as possible. Those patients who fail to respond to such treatment need a regular review and the benefits of new investigative and treatment techniques applied to the chronic population as they come on stream. The scattered and unco-ordinated facilities that exist in the United Kingdom probably make this impossible to achieve with present resources. There is a pressing need to improve resources (the average waiting time, for instance, between referral of a patient with newly developed seizures and actually being seen by an appropriate consultant, usually a neurologist, may be between three and six months which is far too long. Delay will often force the family practitioner, subject to pressure from the family for diagnosis and treatment, to introduce some kind of treatment before the patient can be properly assessed). Even when neurological and neurophysiological assessment is available to the patient quickly and the appropriate medical treatment can be instituted swiftly, the necessary social and psychological assessment and management may not be available. Services need to be improved so that a rapid response to the newly diagnosed patient is always possible, the chronic patient can be supported and the various professional disciplines that are needed to successfully manage epilepsy can work together in co-operation preferably on the same site. Although this need has long been recognised, and, indeed, various government reports have paid lip service to it, implementation of such recommendations has not occurred. Perhaps our new health service “market” will be more sensitive to patient “need” (although I fear it may be more responsive to patient “demand”). It will be necessary to try to increase the number of neurologists available to a particular community, to increase their interest and
training in epilepsy, to develop specialist clinics, to ensure that mental handicap specialists and general physicians, and possibly psychiatrists, are better trained in epilepsy and to improve family practitioners knowledge of the need for accurate diagnosis and early treatment of newly diagnosed epilepsy and of the benefits of recent changes in investigation and treatment techniques for patients with chronic epilepsy. What is also needed, is better recognition of the social and psychological management of epilepsy and the prevention of secondary handicaps. Is it possible to shift some of the burden of the care of people with epilepsy from the hospital based services into the community? This may be less expensive. Diagnostic facilities are likely to remain hospital or centre based: they should, perhaps, be sited near to the specialist epilepsy clinic so that day patient assessment is possible (with brief, well planned, admissions for those patients who live too far away from the refemng centre for day patient assessment, or who need prolonged video/EEG monitoring - although my own experience is that some video/EEG monitoring is possible in the patients own home, where seizures are more likely to occur). Some severely disabled people with epilepsy, particularly with uncontrolled epilepsy, or who have other handicaps may need in-patient or institutional care, most for rehabilitation, rarely as a place to live with dignity. Occasionally patients with severe seizures or status require brief in-patient care. But for the rest, care and investigation could be carried out in the community particularly if there is improved communication between the specialist and the family practitioner. The development of computer links between the centre and the family practitioner will help as will a system whereby the specialist, the family practitioner and the patient all share the same information by use of a co-operation card and, later possibly, the sharing of computer discs. A liaison worker between the clinic and the family practitioner in the community is also valuable particularly if that worker is paramedical so that he or she can carry out routine care and assessments, work on preventing a secondary handicap and provide education and counselling in the home. My experience of such a system in our clinic is that it can be very successful, although there is a limiting factor in terms of case load and distance to be travelled to see the patient. Our community team is coming to the view that whenever and wherever possible group counselling should be employed and that the primary role of the community epilepsy worker should be in educating other health professionals and in providing packets with modules of care rather than continuing care. The specialist can also visit the family practitioner. Mini clinics could be held with a group of family practitioners, in which all the patients belonging to the group could be reviewed and their care audited and those patients who
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Betts need specialist care selected after discussion. In the UK an experiment with this system was carried out and it was found valuable although it potentially clashes with traditional methods of refemng patients for specialist care and therefore needs to be explored further. Similar clinics are being set up in diabetic care, often with a particular family practitioner taking a specialist interest in the condition.
Conclusion The provision of services for people with epilepsy in the United Kingdom at the moment is deficient, both in physical resources for proper diagnosis and in the provision of physicians skilled in epilepsy. Early accurate recognition of epilepsy and its correct immediate management is of vital importance, but this need is almost certainly not being met. A regular review of patients with chronic epilepsy so that they can obtain the benefits of new information about epilepsy is also lacking and will require both the improvement of diagnostic services, an increase in physicians specializing in epilepsy, and dissemination of knowledge about advances in epilepsy to a wider circle of medical personnel. There is a need to improve our knowledge of the morbidity and mortality of epilepsy and also a need to recognise that the prevention of secondary handicap, particularly psychological handicap, is as important as medical care. There is a particular need to improve the education of general practitioners about epilepsy and their communication with specialists and to
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improve education about epilepsy in general, to mobilize “patient power” in our market force lead health service. Patients may well agree with the above needs, but will also want to improve communication between doctor and patient and ensure the provision of better information about new treatments and therapeutic possibilities. The new methods of costing and provided health care are said to be more sensitive to patient pressure, which may help to improve services for people with epilepsy if this opportunity is grasped and if the administrative services that run the health service are made aware of the potentials of improving health care for people with epilepsy and of the economic advantages that may ensue from such improvements in treatment.
References Stevens A, Gabbey J. Needs Assessment. Health Trends 1990 Shorvon S . Services for people with epilepsy. In: Richens et a1 Eds. A textbook of epilepsy. Edinburgh: CHurchill Livingstone, 1988 3. MacMaster K. Epilepsy: risks and responsibilities. Paper presented at The Second European Epilepsy Conference. Dublin 1990 4. Clinical Controversy: Conversations with Clinicians. What to do when the first anticonvulsant does not work. Seizure 1992: l(1): to be published 5 . Chappell B. Epilepsy: patient views on their condition and treatment. Seizure 1992: l(2): to be published 1.
2.
T. Betts NeuropsychiatricClinic Universityof Birmingham
Introduction Apart from migraine, epilepsy is the most common brain disorder to affect mankind. In addition to the 2 - 3 % of people who in their life time will be directly touched by it, many more people wiU be indirectly touched by it in terms of having a child, relative or an intimate companion who has the condition. Many must, therefore, learn to live with the condition and to cope with it, and will seek help for it. There is a physical burden to having epilepsy. Accidents can happen in seizures resulting in head injury, fractures or severe bums and, occasionally, death. There are also severe psychological consequences to having epilepsy. A chronic fear of seizures can exist both in the person who has the condition and in that persons family and peer group, so that the individual with epilepsy becomes constrained by either his own or other peoples fear to become grossly over protected and hedged round with many unnecessary restrictions on social, recreational and work activities. Epilepsy frightens people and therefore those who have the condition tend to become stigmatised or rejected and unpleasant attributes are falsely prqjected on to them. Until comparatively recently, epilepsy was difficult to treat, and the necessary medication had unpleasant shortterm and long-term side effects. Until recently, also, a somewhat cavalier attitude was taken towards the diagnosis of epilepsy, so that many people who did not actually have the condition were labelled as having it, and people who did have it were labelled as having something else. Now it has been recognised that there is not only a Address: T. Betts NeuropsychiatryClinic Queen Elizabeth Psychiatric Hospital MindelsohnWay Birmingham, B15 2QZ U.K.
need for accurate diagnosis but there is also a need also for early diagnosis and treatment as the prognosis for epilepsy is much better if attacks can be swiftly brought under control. It also has to be recognised that successful control of seizures (usually with medication) will not in itself resolve other problems that may exist with the epilepsy, relating both to the psychological handicaps brought about by the condition and also any associated physical or mental handicaps that co-exist with it. A mentally handicapped child with epilepsy for instance needs to lose his seizures if at all possible (if he does not pay too high a price for seizure control in terms of drug side effects). This control of seizures will aid his rehabilitation but will not restore his intelligence and he will still need other services. Full control of seizures may also do little for any associated behaviour problems. Although epilepsy can be seen as a condition in which medical imput is necessary for seizure control, it is not just a medical condition: social and psychological treatments must also be offered to a large proportion of people with epilepsy and their families. This is becoming increasingly recognised. What is also becoming increasingly recognised is that services for people with epilepsy are patchy, inconsistent and usually fall short of an ideal service. As with many other chronic conditions (particularly those that are stigmatised or misunderstood) the patients voice has become more important. Throughout the world patient groups have developed or are developing, which seek to address the social stigma of epilepsy and are starting to press for better services. Self advocacy for people with epilepsy and self empowerment are becoming important movements. The development of new imaging techniques, new medication, better surgical techniques, and better understanding of the chemistry of epilepsy has led to an increasing interest in the condition amongst doctors, both
Betts in specialist services (neurology, paediatrics, mental handicap and psychiatry), and also in primary health care. f i s interest has perhaps been deepened by the introduction of audit’ into many western health care systems, so that for the frst time the questions are being asked: “What is the best health care system for people with epilepsy?” “What are the health care needs of people with epilepsy?”
Health care needs “Need” is what people could benefit from and not necessarily what they ask for. There are three aspects to the “need” for health care that must not to be confused. “Need” is what people could benefit from, “demand” is what they ask for (or what they are told to ask for) and supply is what is actually provided. What is supplied may not be used (perhaps because of poor publicity or lack of knowledge of a service to referring agencies) and some services may be supplied to meet demand but not need and sometimes a provided and needed service is not used or used inefficiently because of reluctance on the part of the people who could potentially use it. An attempt to increase this desirable state of affairs will be difficult if we do not know what service is actually being provided, or what the need actually is (or even what the demand is) particularly if we have little knowledge of the epidemiology of the condition in question and do not have an accurate knowledge of its morbidity, mortality and associated handicaps, and its ability to respond to any treatment offered. Medical care is becoming increasingly expensive. In all the countries of the western world, whether we like it or not, some attempt will be needed to try to rationalise services and to seek value for money. Those of us working and living with epilepsy will wish for the best health care going: if we are to achieve this and also achieve the co-operation of governments and administrative services that will provide the health care, we need to develop a much clearer view of what the needs for health care for people with epilepsy actually are. (1) Health care needs and epilepsy About fifty new cases of epilepsy occur each year in each 100,000 members of the population however, during the frst two decades of life the yearly seizure incidence is even higher. Approximately an equal number of young children have febrile seizures each year, but most of these do not recur. This is the incidence of the condition which means the number of new cases per 100,000 inhabitants per year. The prevalence of epilepsy is about 6 to 7 people per every thousand of the population (the word prevalence means the number of people in the population who have a condition at a particular point in time). The life time prevalence of epilepsy (the number of people in the population who have
ever suffered From the condition) has not been well estimated, but is around 3%, if one excludes febrile convulsions. The incidence of epilepsy is commonest in young children and in the elderly. After childhood the prevalence of epilepsy does not change much, presumably because some people are moving out of prevalence having lost the condition, others are moving in, having gained it. Most people who develop epilepsy will stop having seizures within two years of the onset of the condition. Most will have responded to medication, a few will have resolved spontaneously and in a very few the cause of the seizures will have been recognised and treated (eg, cerebral tumours). Between 20-30% of people who start epilepsy will not have lost their seizures after two years. Many of these have additional handicaps, either physical or mental, or have social or psychological problems which make medical care difficult. Since the prognosis of epilepsy has only recently become as good as this, there is still within the population a large number of people who, had they developed epilepsy now, might have gained control but did not do so with the methods of treatment available when they did develop it. Many of these patients will have had epilepsy for many years: some would probably respond to newer methods of treatment (like new drugs or surgery) but may not be currently involved with medical services, and are therefore unaware that better help is available. There exists, therefore, three groups of people with epilepsy. This fEst group, the most numerous, are those who develop epilepsy with no coincidental handicap and who will reach full seizure control swiftly, providing they are treated. They may still suffer from the social and psychological handicaps of epilepsy. The second group are those people who have had epilepsy for a long time, which has not come under control and who may well have some of the social stigmata and psychological problems of chronic epilepsy, but are not otherwise handicapped. The third group are those patients with epilepsy who have additional handicaps which often make the management of the epilepsy difficult or impossible (such as mental handicap). Although the prognosis for the control of seizures is much better than it used to be, perhaps as many as 50% of people with epilepsy requiring regular medical attention (or 30% of all identified patients with epilepsy) have behavioural problems of various kinds associated with epilepsy (2). Some of these patients will have significant psychiatric morbidity and others will be mentally handicapped. The prevalence of epilepsy in the severely mentally handicapped is high. Many patients with epilepsy therefore, in addition to any medical intervention needed to control seizures, will need other services, or will place a demand upon those services if their needs cannot be met. The true morbidity of epilepsy is unknown, as is the mortality rate. Minor morbidity in patients who have frequent seizures is probably considerable in terms of cuts that require suturing fractured bones, in-patient
Epilepsy Services observation because of head injury, bums etc. (3). The incidence and prevalence of severe morbidity in people with epilepsy directly related to the epilepsy is unknown. A number of patients receive severe bums or head injury as a result of seizures, and it is possible that repeated head injuries in some patients with severe epilepsy eventually leads to cognitive impairment as may severe status epilepticus. It is known that the mortality rate amongst people with epilepsy is at least twice that of an equivalent non epileptic population. This increase in mortality seems to be particularly high in the first ten years after the diagnosis. A few such deaths may be due to treatment itself (either after surgery or due to untoward reactions to antiepileptic drugs (AED) or due to the underlying cause of the epilepsy. Some deaths are directly related to seizures (ie, drowning in the bath) or to status epilepticus. Accidents as a result of a seizure (such as being run over or falling and sustaining a fatal injury) also occur and suicide is known to be much more common in people with epilepsy than would be expected by chance. The reasons for this are undoubtedly multifactorial (including ready access to powerful poisons, social factors and depressive illness). In recent years it has also been recognised that some people with epilepsy die suddenly and unexpectedly but not in relation to seizures: this seems commonest in young adults, particularly males and is as yet unexplained. Patients with severe epilepsy that cannot be controlled therefore need an assessment of risk: the degree of this risk will obviously depend on the type of epilepsy that the person has: any necessary intervention and need for supervision should be as non restrictive and as unobtrusive as possible. Some people may need help to adjust to their environment and will benefit from the provision of special safety aids, if morbidity and mortality are to be reduced. It should be remembered, however, that the majority of people with epilepsy are not at great risk from their seizures and should lead as unrestricted a life as possible and that decisions about restrictions, the amount of risk a person can tolerate and the amount of supervision needed must be based on an individual assessment of the patient: blanket rules and restrictions should not be applied. One restriction which is universally placed on people with active epilepsy is a prohibition of driving. In a patient with active epilepsy this is obviously reasonable. Indeed first seizures occurring in people who are driving at the time may be responsible for accidents (these are obviously impossible to prevent). The resmction on driving should however be a reasonable one, so that the patient knows that after a stated period of time providing he has no further seizures he can drive again and that a sympathetic individual assessment of his case will be made by the authorities. If rules against driving are too restrictive, patients will be tempted to ignore them and patient cooperation with driving regulations will fail. This
cooperation must be preserved particularly as the onus of reporting epilepsy to the Driving Licence Authorities at the moment is on the patient. Most medical authorities agree that patients who develop seizures should be assessed by a hospital based service with access to full diagnostic facilities. Ideally they should be assessed by a physician who has wide experience of epilepsy and who recognises that the diagnosis of epilepsy is sometimes difficult and requires time, but who also recognises that once the diagnosis of epilepsy is made with reasonable certainty and the epilepsy has shown a conspicuous tendency to continue, then there is a need for a rapid treatment of the seizures with the appropriate medication in order to get them under control as quickly as possible and therefore improve the prognosis. Since the future management of the patient will be determined to some extent by any existing handicaps essential psychological and psychiatric assessment should be carried out at the same time plus full neurological diagnostic assessment. To achieve control some patients will need repeated visits for antiepileptic serum level monitoring and possibly a change in medication if the originally chosen drug does not work. To ensure compliance and to minimise the secondary handicaps of epilepsy, the patient and his family should be educated about epilepsy. By the end of two years the majority of patients will have achieved seizure control and can be returned to the supervision of their primary health care team, with some decision made about how long the patient should continue to take his antiepileptic medication. This will of course depend on the nature of the epilepsy and on other factors (including whether or not the patient wishes to regain his driving licence). The decision whether to withdraw drugs or not remains a question of fine clinical judgement. Those patients who do not achieve seizure control will need careful re-assessment after two years. It is assumed by that time that they will have had a ma1 of the full range of convential AED's and will have been assessed for possible surgery (4). Once the best has been done for the patient perhaps he should return to primary care with a proviso that he be reviewed from time to time by the hospital services for any necessary re-investigation or introduction to new therapies. Whether a patient continues under the care of the hospital services or continues under the care of the primary health team, it should be f d y established who the doctor is who is primarily responsible for the care of the patient. If the patient is being reviewed in hospital, as far as possible, the patient should see the same doctor each time, and not a succession of different junior doctors who have to grapple with the patients increasingly expanding notes. The aim of therapy should be complete seizure control if possible, providing this is cornpatable with a reasonable quality of life. Quality of life measures are being developed for people with epilepsy: they relate to a certain extent to
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Betts seizure frequency and severity but also to the adjustment of the patient to his illness and his psychological well being and restrictions on activity. If the patient is being managed in primary care he should be actively reviewed from time to time and his care should be subjected to audit, so that he does not become neglected and forgotten, merely receiving repeat prescriptions and being cut off from advances in epilepsy care. The primary care of epilepsy therefore needs good communication between specialist services and the primary care physician, and a good dissemination of knowledge about recent advances in epilepsy. This will be facilitated by good information systems for people with epilepsy and their families, developed by lay epilepsy organisations so that the people with the condition are also kept abreast of developments, and can enquire about them. A recent survey of members of the British Epilepsy Association (5) suggested that the majority of patients with chronic epilepsy in the United Kingdom are managed by their general practitioners. Main complaints related to lack of communication between the patient and the doctor looking after him and lack of information about new treatments that are available (patients also felt that they were left too much to their own devices in terms of adjustment of medication). In a group of one million people there will be approximately 500 new cases of epilepsy occurring every year (500 new cases of febrile convulsions will also occur, although most of these will not recur). In the population of one million people there will be about 5000 active cases of epilepsy, that is patients either still having seizures or still under treatment although their seizures have ceased. In the United Kingdom there will be approximately 465 general practitioners to that million patients, which means that each general practitioner will have approximately 11 patients with epilepsy on his books (although not all of them may be known to him) and about one patient a year in his practice will develop epilepsy. It is likely that the general practitioner will be responsible for most of the primary care of the patients with chronic epilepsy on his list and will almost certainly be prescribing for them. The hospital facilities available to the general practitioner to refer to, will vary widely within the country, but on average for one million patients there will be 11 paediatricians available in the United Kingdom, who, between them will need to deal with 500 fresh febrile convulsions a year if, as most of them are, they are referred to hospital, and perhaps a third to a half of the new cases of epilepsy. There are about three consultants in mental handicap to every million people in this country and some of the more handicapped members of the chronic population will be managed by them and fresh cases of epilepsy will arise within the population already managed by them. There will be perhaps a couple of neurosurgeons to that million patients: but most of them do not specialize
in the surgical treatment of epilepsy. One million people in the United Kingdom are served by up to three neurologists, so that unless the neurologists specialize full time in the management of epilepsy, it is likely that they can only deal with a small fraction of patients referred with new seizures and with chronic epilepsy. Since there is likely to be only one consultant neurophysiologist to a million patients, whose skills will be needed in may other neurological and medical conditions as well as epilepsy, the provision of appropriate neurophysiological facilities may be inadequate to meet the needs of people both developing epilepsy and those who need intensive investigation because their epilepsy is not under control. The provision of radiological services within the United Kingdom is also patchy: there may well be a deficiency of CT facilities in some areas for those patients (using careful clinical criteria) who need CT examination. There will almost certainly be a deficiency of Magnetic Resonance Imaging facilities, although MRI is thought by many to be a better imaging technique for patients with possible symptomatic epilepsy. Other scanning facilities including PET and SPECT may have a place in the management of epilepsy, particularly in those patients undergoing surgical evaluation, although the place of these is not as yet fully evaluated or determined. Apart from research institutions, such facilities are almost non existent in the United Kingdom. A population of one million is likely to be served by 20 general consultant physicians and by approximately the same number of psychiatrists. Many general physicians see newly diaflosed patients with epilepsy who are presented to them as an emergency, but with some exceptions, general physicians may not be well versed in the management of chronic epilepsy: the number of patients who are routinely managed by general physicians is not known. In the United Kingdom psychiatrists have little interest or expertise in epilepsy, even though mental illness of all kinds is commoner in people with epilepsy than would be expected by chance and people with epilepsy are over represented in new admissions to mental hospitals and also in the chronic population in those hospitals. Very few British psychiatrists specialize in the management of epilepsy (if they do they often call themselves “neuropsychiatrists”), in other countries the proportion of psychiatrists having expertise in epilepsy may be higher. Historical reasons in the United Kingdom have given rise to the split between neurology and psychiatry, with resulting detriment to both disciplines. Special clinics for epilepsy in the United Kingdom are rare and serve only a very limited number of people with epilepsy, tending to concentrate on those people whose epilepsy is either severe and intractable or who have other handicaps. The majority of people with epilepsy in the United Kingdom are not reached by such specialist services.
Epilepsy Services
Future developments In the United Kingdom, services for people with epilepsy are inadequate and patchy: many people with epilepsy who need, and would benefit from, specialized care are denied it because of lack of provision. The development of a “market economy” for the provision of health case in the United Kingdom may make the situation worse as those institutions who do not attract patients will wither. A market economy, however, also has potential for developing better services, providing that purchasers of such services recognise that a better service is needed and that it will actually carry economic benefits to the population that it serves (by reducing morbidity and mortality and helping people to stay in, or obtain, jobs). This is why better estimates of the morbidity and mortality of epilepsy and the benefits to be gained from rapid seizure control need to be researched and spelt out. The medical needs for people with epilepsy are a rapid referral of patients developing seizures to a centre where there is expertise both in making a clinical diagnosis of epilepsy and applying the necessary investigations quickly, and then supplying the best treatment as rapidly as possible. Those patients who fail to respond to such treatment need a regular review and the benefits of new investigative and treatment techniques applied to the chronic population as they come on stream. The scattered and unco-ordinated facilities that exist in the United Kingdom probably make this impossible to achieve with present resources. There is a pressing need to improve resources (the average waiting time, for instance, between referral of a patient with newly developed seizures and actually being seen by an appropriate consultant, usually a neurologist, may be between three and six months which is far too long. Delay will often force the family practitioner, subject to pressure from the family for diagnosis and treatment, to introduce some kind of treatment before the patient can be properly assessed). Even when neurological and neurophysiological assessment is available to the patient quickly and the appropriate medical treatment can be instituted swiftly, the necessary social and psychological assessment and management may not be available. Services need to be improved so that a rapid response to the newly diagnosed patient is always possible, the chronic patient can be supported and the various professional disciplines that are needed to successfully manage epilepsy can work together in co-operation preferably on the same site. Although this need has long been recognised, and, indeed, various government reports have paid lip service to it, implementation of such recommendations has not occurred. Perhaps our new health service “market” will be more sensitive to patient “need” (although I fear it may be more responsive to patient “demand”). It will be necessary to try to increase the number of neurologists available to a particular community, to increase their interest and
training in epilepsy, to develop specialist clinics, to ensure that mental handicap specialists and general physicians, and possibly psychiatrists, are better trained in epilepsy and to improve family practitioners knowledge of the need for accurate diagnosis and early treatment of newly diagnosed epilepsy and of the benefits of recent changes in investigation and treatment techniques for patients with chronic epilepsy. What is also needed, is better recognition of the social and psychological management of epilepsy and the prevention of secondary handicaps. Is it possible to shift some of the burden of the care of people with epilepsy from the hospital based services into the community? This may be less expensive. Diagnostic facilities are likely to remain hospital or centre based: they should, perhaps, be sited near to the specialist epilepsy clinic so that day patient assessment is possible (with brief, well planned, admissions for those patients who live too far away from the refemng centre for day patient assessment, or who need prolonged video/EEG monitoring - although my own experience is that some video/EEG monitoring is possible in the patients own home, where seizures are more likely to occur). Some severely disabled people with epilepsy, particularly with uncontrolled epilepsy, or who have other handicaps may need in-patient or institutional care, most for rehabilitation, rarely as a place to live with dignity. Occasionally patients with severe seizures or status require brief in-patient care. But for the rest, care and investigation could be carried out in the community particularly if there is improved communication between the specialist and the family practitioner. The development of computer links between the centre and the family practitioner will help as will a system whereby the specialist, the family practitioner and the patient all share the same information by use of a co-operation card and, later possibly, the sharing of computer discs. A liaison worker between the clinic and the family practitioner in the community is also valuable particularly if that worker is paramedical so that he or she can carry out routine care and assessments, work on preventing a secondary handicap and provide education and counselling in the home. My experience of such a system in our clinic is that it can be very successful, although there is a limiting factor in terms of case load and distance to be travelled to see the patient. Our community team is coming to the view that whenever and wherever possible group counselling should be employed and that the primary role of the community epilepsy worker should be in educating other health professionals and in providing packets with modules of care rather than continuing care. The specialist can also visit the family practitioner. Mini clinics could be held with a group of family practitioners, in which all the patients belonging to the group could be reviewed and their care audited and those patients who
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Conclusion The provision of services for people with epilepsy in the United Kingdom at the moment is deficient, both in physical resources for proper diagnosis and in the provision of physicians skilled in epilepsy. Early accurate recognition of epilepsy and its correct immediate management is of vital importance, but this need is almost certainly not being met. A regular review of patients with chronic epilepsy so that they can obtain the benefits of new information about epilepsy is also lacking and will require both the improvement of diagnostic services, an increase in physicians specializing in epilepsy, and dissemination of knowledge about advances in epilepsy to a wider circle of medical personnel. There is a need to improve our knowledge of the morbidity and mortality of epilepsy and also a need to recognise that the prevention of secondary handicap, particularly psychological handicap, is as important as medical care. There is a particular need to improve the education of general practitioners about epilepsy and their communication with specialists and to
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improve education about epilepsy in general, to mobilize “patient power” in our market force lead health service. Patients may well agree with the above needs, but will also want to improve communication between doctor and patient and ensure the provision of better information about new treatments and therapeutic possibilities. The new methods of costing and provided health care are said to be more sensitive to patient pressure, which may help to improve services for people with epilepsy if this opportunity is grasped and if the administrative services that run the health service are made aware of the potentials of improving health care for people with epilepsy and of the economic advantages that may ensue from such improvements in treatment.
References Stevens A, Gabbey J. Needs Assessment. Health Trends 1990 Shorvon S . Services for people with epilepsy. In: Richens et a1 Eds. A textbook of epilepsy. Edinburgh: CHurchill Livingstone, 1988 3. MacMaster K. Epilepsy: risks and responsibilities. Paper presented at The Second European Epilepsy Conference. Dublin 1990 4. Clinical Controversy: Conversations with Clinicians. What to do when the first anticonvulsant does not work. Seizure 1992: l(1): to be published 5 . Chappell B. Epilepsy: patient views on their condition and treatment. Seizure 1992: l(2): to be published 1.
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