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New departures in epilepsy care: an epilepsy liaison service
Seizure 1994; 3:301-308
New departures in epilepsy care: an epilepsy liaison service TIM BETTS & KATE SMITH University of Birmingham, Seizure Clinic and Epilepsy Liaison Service, Queen Elizabeth Psychiatric Hospital, Birmingham, UK
Epilepsy care in the UK is patchy, fragmented and poorly coordinated. Primary care management is appropriate for many people with epilepsy but there are practical difficulties in delivering care at this level which renders the service that patients get far below the best they could receive. Epilepsy care in a primary setting is often not audited: patients managed purely in a primary setting may be denied access to recent advances in diagnostic techniques and therapies for epilepsy. As healthcare becomes more consumer led, purchasers of epilepsy care [largely general practitioners (GPs)] must be more aware of what they need to purchase to improve care for people with epilepsy within their own practice. People with epilepsy and their relatives are already beginning to make their own demands and requests for improvement in epilepsy care, both at primary and secondary levels of care: their needs will have to be taken into account. The Birmingham University Epilepsy Liaison Project aims to bridge the gap between primary and secondary care, and provide both advice about audit of epilepsy care and educational materials for the primary care physician. It also provides for better communication between the primary care physician, the patient and secondary and tertiary facilities. We hope, if it fulfils its designed function, that it will provide a model of future care for epilepsy in this country.
Key words: epilepsy care; audit; education; co-operation card; patients needs.
INTRODUCTION Two recent reviews of epilepsy services in the U K 1'2 have suggested t h a t care for people with epilepsy is poorly organized, fragmented, patchy and often of not very good quality. One of these reviews, the so-called 'Needs Docum e n t '2, proposes those standards of care which should be achieved: it also makes some recommendations for the m a n a g e m e n t of epilepsy in a primary care setting, in particular better audit and better communication between providers of primary and secondary care for epilepsy. It is intended to present a second 'Needs Document' in due course following assessment of responses to the first: the second document will have a much expanded section on primary care of epilepsy. In recent years various protocols have been produced (by various primary care groups) presenting better care plans for the m a n a g e m e n t of epilepsy in primary care and giving advice about audit, both in the UK and in Ireland 3-6. 1059-1311/94/040301 +08 $08.00/0
Attempts have also been made to audit the work of epilepsy clinics 7's and also to assess the needs and views of people with epilepsy and their families9. Epilepsy is the commonest serious neurological disability which also has far-reaching social and psychological consequences l°. Although it has its own unique features it has m a n y of the characteristics of a psychosomatic disorder 1°'11. It also shares m a n y characteristics of other chronic conditions such as diabetes and asthma, although compared with these two conditions it is relatively neglected and overly stigmatized. A general practitioner (GP) with a list of 2000 patients is likely to have around 10 patients on his or her list ordering repeat medication for epilepsy on a regular basis. Another 10 to 15 patients on the list will have had seizures in the past: perhaps one patient in the practice will develop seizures for the first time every year or so. It is likely t h a t not all these patients will be known to the GP; a proportion © 1994 British Epilepsy Association
302
of t h e m will be receiving unnecessary treatment; some patients will no longer need to take anticonvulsants although are still taking them; some patients who could be seizure-free with the right t r e a t m e n t will not have achieved this desirable state of affairs. Many patients and their medical advisors still accept a level of control which is far from the ideal (which is no seizures at all with a normal quality of life free from side-effects of medication). It is also possible that one or two patients on this hypothetical GP's list, who are receiving t r e a t m e n t for epilepsy, do not actually have the condition 2' lo. GPs who aim to improve the care of people with epilepsy within their practice will need the advice and help of hospital and specialist services for epilepsy. The ideal composition of specialist care services for epilepsy is outlined in the Needs Document 2. Basically three levels of service are envisaged in the document although provision of such services at the present time is very patchy. The first level of provision is an epilepsy clinic headed by a physician who has an interest in epilepsy (who m a y be a member of several different medical disciplines) with access to good diagnostic services including electroencephalography facilities and radiology, especially computed tomography and magnetic resonance imaging. It is envisaged that this service will give advice about patients who have just developed epilepsy and about patients who, after initial diagnosis and treatment, have seizures which do not come under control quickly. It is envisaged t h a t there will be a close relationship between the clinic and the GP: after initial assessment, diagnosis and treatment, patients will return to the care of their GP. For those patients whose epilepsy is particularly refractory, a more specialized epilepsy clinic is envisaged which has other specialist input (including neurosurgical facilities) and access to more specialist investigations, particularly electroencephalography and radiology. The third level of secondary epilepsy care is an epilepsy centre with residential facilities for more long-term rehabilitation and assessment, particularly for patients who in addition to intractable seizures have other handicaps and disabilities. Both these two more specialized centres will also need to keep in good communication with the patient's GP: ultimately even these 'specialized' patients will be returned to the care of their GP. There is a need to improve the GP's knowl-
T. Betts & K. Smith
edge of epilepsy, particuarly about modern methods of investigation and t r e a t m e n t so that those patients on his/her list who are receiving less t h a n optimum care can have their care improved. The GP will need advice about audit so that he/she can recognize those patients on the list who might benefit from different treatments. There is a need to improve the GP's awareness of what good secondary and tertiary epilepsy care is available to him/her. There is a need to improve communication between the GP and specialist care, a communication in which the patient should also share. A recent survey of the perceptions of people with epilepsy and their families in terms of epilepsy care suggested that to t h e m the disadvantages of epilepsy (Table 1) and the need for Table 1 : Patient perception of the disadvantages of epilepsy
Driving Unpredictability Employment Learning Independence Social/relationships/sex After Chappell ~.
Table 2: The patient's view of epilepsy care
Improve communication with physician More information at time of diagnosis and afterwards (from physician) Need for better information about new therapies More information about side-effects Better communication between professionals Not being left to make too many treatment decisions on their own Someone to talk to in the clinic More education for primary care teams After Chappell 9.
improvements in epilepsy care (Table 2) are very much related to the psychosocial consequences of epilepsy r a t h e r t h a n to the medical consequences of it 9. They rated very highly the need to improve communication with their physician and to improve communication between their various carers. They also rated highly the need to improve the knowledge of epilepsy and its m a n a g e m e n t in general practice. It is, of course, a mistake to rely just on the views of hospital doctors and patients and their families about how to improve epilepsy care (particularly in the primary setting), important as they are. It is very important to gain views of GPs themselves about how they feel
An epilepsy liaison service
303
about the services they provide, how they themselves might wish to improve care and what resources they feel that they will need to be able to do this.
mation to improve the care of people with epilepsy in their practices. As a result of the information-gathering exercise it became clear that the liaison service will have several functions (Table 3).
The Epilepsy Liaison Service
Table 3: What epilepsy liaison will provide
For this reason the Epilepsy Liaison Service has been set up in Birmingham under the joint auspices of the Seizure Clinic of Birmingham University (currently situated in the Queen Elizabeth Psychiatric Hospital as an outpatient and community-based epilepsy service) and the British Epilepsy Association: the project is supported by an educational grant from the Wellcome Foundation. The liaison team consists of a Consultant in Neuropsychiatry (TB) and an Epilepsy Liaison Officer
Fast track referral Audit package Managementplan } Treatment protocols Individualized Informationpacks Co-operation card Computerizedclinic record Computerizedmanagement protocol Computerizedpatient information
(KS). The project was set up in May 1993, with the aim of improving communication between secondary/tertiary care in epilepsy and prim a r y care, and developing audit packages for primary care physicians to use in their practice w h o s e patients might benefit from reinvestigation or further treatement for their epilepsy. It was envisaged that eventually, much of the work in primary care might well be done with the primary care practice nurse, particularly as there is evidence that much success has been gained in the management of diabetes and asthma in primary care by the use of the skills of primary care practice nurses. It was recognized that in a few areas in the UK, liaison nurses' posts have been developed to provide a link between secondary and prim a r y care: it is clear that the role of the epilepsy liaison nurse varies widely in those posts which have been established. Most nurses seem to be attached to a clinic and work only with the clients of that clinic, although one or two work largely in a primary care setting and have their own clinics. The role of the liaison officer in this project was initially to investigate what models of liaison between primary and secondary care in the U K already existed, to gather information from GPs and practice nurses about their needs and requirements for audit (and their current practices) and then, as a result of this information-gathering exercise, to develop appropriate materials for audit and to help the GP and the practice nurse to acquire better infor-
Fast-track referral It became clear that one of the main needs of the GPs interviewed as part of the initial liaison assessment was for an improvement in hospital services. Part of this improvement was perceived as better communication between clinic and GP (which we will refer to later) but an equally important perception was the need for the clinic to respond quickly to GPs' requests for urgent assessment (either patients with new onset seizures or patients already under c a r e - - e i t h e r by the clinic or the G P - - w h o appear to have developed some complication of treatment or a sudden increase in or change in seizure frequency or style of attack). We found, in the practices we investigated, that the average waiting time between referral of a patient with newly developed seizures and that patient being seen by the appropriate specialist might be anything from 3 - 7 months. Such an inordinate delay will often force the family practitioner (subjected to anxious pressure from the patient's family for diagnosis and treatment) to introduce some kind of treatment before the patient can be properly assessed. An effective fast-track referral system for such patients is therefore being developed for our own clinic. It is hoped when the system is fully working that all such patients will be seen within seven days of the problem presenting itself to the GP. The development of such a fast response clinic is our service's response to an expressed need by GPs: we hope this will
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encourage GPs to consider other elements of the package that we will be offering.
patient's age, previous history and current drug use.
Audit package INFORMATION PACKS Various models of epilepsy audit in primary care already exist and we are currently evaluating them. Our present audit package is based on that developed by Dr Bill Hall and Mr Brian Chappell for the British Epilepsy Association which we regard as an effective starting point for developing a more comprehensive audit package. Although it is comparatively easy to design an audit package which gathers the necessary medical information about the patient, none t h a t we have assessed contain enough details about the social and psychological care of the patient or contain measures of quality of life which are both reliable and meaningful. For most people with epilepsy, quality of life issues seem more important than medical ones 9.
MANAGEMENT PLANS/TREATMENT PROTOCOLS It is clear from our discussions with primary care physicians and nurses that they often have insufficient information to manage patients effectively (both for some of the common medical problems related to epilepsy and in terms of treatment protocols for using some of the new drugs now available for epilepsy or recognizing when a patient might be suitable for surgical referral). One particular m a n a g e m e n t problem that constantly recurred in our discussions with GPs was that of the woman with epilepsy who wished to become pregnant and who needs therefore both preconception assessment, m a n a g e m e n t of the pregnancy and postnatal management. There was an expressed need for good management plans and t r e a t m e n t protocols for primary care physicians to use in their practices and we are developing these. Our first management plan, which we will be publishing by the end of 1993, is a guide for the GP on the management of epilepsy during pregnancy, and this will be followed by treatment protocols for the use of the new anticonvulsant drugs in primary care. Desk-top publishing facilities will enable us to provide the GP either with a general plan or an individual plan related to a particular patient which can take into account, for instance, the
Primary care physicians and practice nurses welcome specific advice and information given to their patients about epilepsy, particularly if that information can be shared with the primary care team. We see one of our roles, therefore, as developing information packs for people with epilepsy which can be used either in our clinic or in a primary care setting, and which can be personalized so that they have direct reference to the particular patient and contain information which is relevant to him or her. Many patients complain that information available to them from leaflets and books is often of such a general nature that most of what they read has little application to them: with the use of our desk-top publishing facility high-quality material will be available, very much related to the patient's own case and circumstances. In conjunction with AVC Multimedia we are developing a computer information programme for patients which will be available in the clinic. It will also be available for general distribution.
CO-OPERATION CARD One of the main deficiencies in the relationship between secondary and primary care (which both ourselves and our primary care informants have identified as a main priority for change) is the poor quality of information that passes between the two and the lack of a shared information base. Even if communication is established between primary and secondary care, so that both the epilepsy specialist and the primary care physician know what each other is doing, this information is often not shared by the patient. It is saddening to interview patients who have had epilepsy for many years and who know very little about their own condition, cannot name or identify the kind of seizure they have, have no idea about the results of the various investigations they have had and have no knowledge of their treatment plan. If someone with epilepsy is going to manage his
An epilepsy liaison service
or her epilepsy properly, and co-operate with the relevant physicians, the patient and the primary and secondary care physician need to share the same knowledge base, know what the t r e a t m e n t plan is and also know who is in charge of making treatment changes. It seems to us there is a vital need for a cooperation card (rather like that used in pregnancy or diabetic care) on which such basic information is stored. We are in the process of designing such a card (our present model is presented as Appendix 1). The data on the cooperation card are comprehensive but the card folds easily and can be stored in a plastic wallet t h a t will fit into a pocket or handbag without difficulty. The patient's seizure diary is kept with the card, although separate from it. At the moment we use two types of seizure diary. If we are merely recording changes in seizure frequency and changes in medication then we use the widely used simple diary developed by Sanofi. If we need to record more details of the seizures, including a written description and also the circumstances occurring before and after seizure then we use the diary developed by the Wellcome Foundation. The diary is particuarly useful for patients who are undergoing behavioural or cognitive treatment for their seizures. It is our intention to eventually design a seizure diary t h a t would be suitable for rapid transcription to computer storage. The co-operation card as presented in Appendix 1 is almost complete. It is obviously necessary to record details of the patient, the hospital clinic he or she attends and their general pract i c e details, but we feel it will be necessary to indicate somewhere on the card who to contact in case of emergency. We are assessing the card with our patients at the moment and we will seek advice from them as to the best way of doing this. We feel in recording seizure details it is important not only to have the ILAE classification of the seizure but also a verbal description as well (future editions of the card will indicate from whom this description has been obtained). It is important to recognize that patients often have more t h a n one type of seizure and it is also important that they know what the classification of their seizures is. An important minority of patients will also have non-epileptic seizures: it is important that these are documented on the card in the same way as epileptic seizures. The card also records how the diagnosis was made and the strength
305
of conviction about the certainty of the diagnosis. The results of investigations are recorded, plus where they were carried out (so t h a t further information can be obtained if necessary). In assessing the card with our patients we have been struck by the large number of patients who have no idea at all as to what investigations they have had (an affirmative reply to the question 'did they stick your head in something like a washing machine?' usually means t h a t the patients have had computed tomography!). We have found that the gathering of this information and recording it on the card often takes a great deal of effort in terms of delving into GPs' records and obtaining original hospital records, but is worth doing, particularly as it audits our management of the patient and may remind us of things we have forgotten to do. We have learnt t h a t having obtained all the necessary information it is important to fill the card out with the patient, this becomes an educational exercise for the patient (and for the interviewer). The card records whether the patient has ever been assessed for surgery (or for behavioural treatment), and what the outcome was: this avoids much fruitless effort in the clinic and duplication of investigations. Although the patient's diary will eventually contain a written and continually up-dated treatment plan, the co-operation card also records what the current treatment plan is. This means if the patient does see a strange doctor (say by arriving in casualty after a seizure) then it is possible for the treatment plan to be assessed very quickly so t h a t unnecessary changes in t r e a t m e n t are not made by doctors who do not know the patient very well. As the treatment plan changes, it will be possible to stick a replacement over this section of the card. The card also records whether investigations are ongoing or whether investigation is regarded as completed for the particular patient. This should also help to prevent duplicate investigation. The seizure diary is the best place to record present medication. It is essential to know what drugs the patient has had in the past, when the m a x i m u m dose was, why the drug was withdrawn and why the drug is not considered part of the present treatment plan. There are many experimental drugs now being tested for epilepsy: it is important to record whether the patient has been part of a clinical
306
trial so t h a t when the drug comes on the market, one knows if the patient has taken it or not. The card at the moment finishes with a counselling check list on which both doctor and patient indicate by signature t h a t the particularl topic has been discussed. This is particularly important in such areas as driving and pregnancy. There have been several recent examples of litigation against doctors by patients who claim t h a t they were never told not to drive, or t h a t they were never told t h a t their particular drug might affect their unborn baby. F u t u r e editions of the card will contain space to record other illnesses and disabilities in a different way from the present card. It will also contain space for a DSM IIIR classification of any mental illness t h a t the patient may have. Space will also be available for prominently recording known drug hypersensitivities and allergies plus an account of any known untoward reactions to drugs. There will also be an indication of what pensions, benefits or grants the patient is receiving and the date on which they were granted. Some simple numerical expression of a quality of life measure m a y also be contained in this section. The present card does not contain information about blood-level monitoring: such data are not contained on the seizure diary but a future edition of the card will contain a statement as to whether this is considered desirable or not.
COMPUTERIZED CLINICAL RECORDS We are also developing, in conjunction with AVC Multimedia (adapting the successful Amigos Package) a computer program for use in r u n n i n g an epilepsy clinic (CATE). This is a multimedia computer programme designed to store relevant information about patients in an easily accessible way (including digital images) and which will also take over m a n y of the chores of r u n n i n g a clinic in terms of producing standard letters, appointments, etc. A fully computerized clinic record (which will eventually mean t h a t our present cumbersome, untidy, easily 'lost or damaged clinic notes will no longer be needed) will eventually be accessible to the patient's GP. It is our intention t h a t when our clinic is fully computerized the information contained on our database about a particular patient will be given to t h a t patient and also to the patient's GP. The GP will have access to the
T. Betts & K. Smith
clinic data either via a modem or by the exchange of software (stringent efforts will be needed to prevent transfer of computer viruses). The patient will also have a copy (on suitable software) of their own information. We feel it likely t h a t eventually our cooperation card will be in computer disc form. Eventually we hope t h a t a n y t h i n g recorded by the GP about his/her patients in his/her own surgery can be readily accessed and stored by our clinic and vice versa: this will rapidly improve communication between secondary and primary care. It is becoming apparent t h a t this will be one of the main thrusts of the liaison project over the next two or three years.
CLINIC MANAGEMENT PROTOCOLS Eventually development of computerized clinic m a n a g e m e n t will mean t h a t new doctors working in the clinic will have ready access to an individualized t r e a t m e n t protocol for particular patients based on a pre-existing clinic protocol. We are developing such a computer package for the physician with AVC Multimedia. It will also, of course, be possible for the GP (and indeed the patient) to access such m a n a g e m e n t protocols without breaking confidentiality.
CONCLUSION We have therefore outlined the present status of our liaison project and our plans for the future. Our interest in providing information for both GP and patient, and providing advice about audit to help the GP identify those patients t h a t could benefit from being rereferred or re-investigated, naturally led us to look at our own practice: we have come to realize t h a t one of the best ways of improving the care of people with epilepsy in primary care is to improve care and communication in the secondary clinic and develop ways of rapidly and effectively sharing the information we collect about patients with their primary care physician and the patients themselves. We will happily provide further information about the computer programmes, co-operation cards and audit packages as they develop.
ACKNOWLEDGEMENTS We gratefully acknowledge the help and interest of Dr Bill Hall, Mr Brian Chappell, the Wellcome Foundation and AVC Multimedia.
A n e p i l e p s y liaison s e r v i c e
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REFERENCES 1. Betts, T. Epilepsy services: what people need, what they want, what they get. Acta Neurologica Scandinavica 1992; 2: 91-103. 2. Brown, S., Betts, T., Chadwick, D., Hall, B., Shorvon, S. and Wallace, S. An epilepsy needs document. Seizure 1993; 2: 91-103. 3. Hall, B. and Chappell, B. Managing Epilepsy in General Practice: Audit, 1992. Obtainable from British Epilepsy Association, Leeds. 4. Guidelines for Epilepsy in Doncaster, 1988. Available from Liaison Service, Sandringham Road Health Centre, Doncaster DN2 5JM. 5. Cumbrian Standard for the Management of Patients with Epilepsy, 1992. Available from the Cumbrian Medical Audit Advisory Group. 6. Guidelines for the Diagnosis and Management of Epi-
7.
8.
9. 10.
11.
lepsy in General Practice, 1992. Available from the Irish College of General Practitioners, Dublin. Hayden, M., Penn, C. and Buchanan, N. Epilepsy: patient perceptions of their conditions. Seizure 1992; 1: 191-197. Jain, P., Patterson, V. and Morrow, J. What people with epilepsy want from a hospital clinic. Seizure 1993; 2: 75-78. Chappell, B. Epilepsy: patient views on their conditions and treatment. Seizure 1992; 1: 103-109. Betts, T. Neuropsychiatry. In: Textbook of Epilepsy, 4th edition (Eds J. Laidlaw, A. Richens and D. Chadwick). Edinburgh, Churchill Livingstone, 1993: pp. 397-457. Buchanan, N. and Scambler, G. Epilepsy as an educational model. Seizure 1993; 2: 45-48.
New departures in epilepsy care: an epilepsy liaison service TIM BETTS & KATE SMITH University of Birmingham, Seizure Clinic and Epilepsy Liaison Service, Queen Elizabeth Psychiatric Hospital, Birmingham, UK
Epilepsy care in the UK is patchy, fragmented and poorly coordinated. Primary care management is appropriate for many people with epilepsy but there are practical difficulties in delivering care at this level which renders the service that patients get far below the best they could receive. Epilepsy care in a primary setting is often not audited: patients managed purely in a primary setting may be denied access to recent advances in diagnostic techniques and therapies for epilepsy. As healthcare becomes more consumer led, purchasers of epilepsy care [largely general practitioners (GPs)] must be more aware of what they need to purchase to improve care for people with epilepsy within their own practice. People with epilepsy and their relatives are already beginning to make their own demands and requests for improvement in epilepsy care, both at primary and secondary levels of care: their needs will have to be taken into account. The Birmingham University Epilepsy Liaison Project aims to bridge the gap between primary and secondary care, and provide both advice about audit of epilepsy care and educational materials for the primary care physician. It also provides for better communication between the primary care physician, the patient and secondary and tertiary facilities. We hope, if it fulfils its designed function, that it will provide a model of future care for epilepsy in this country.
Key words: epilepsy care; audit; education; co-operation card; patients needs.
INTRODUCTION Two recent reviews of epilepsy services in the U K 1'2 have suggested t h a t care for people with epilepsy is poorly organized, fragmented, patchy and often of not very good quality. One of these reviews, the so-called 'Needs Docum e n t '2, proposes those standards of care which should be achieved: it also makes some recommendations for the m a n a g e m e n t of epilepsy in a primary care setting, in particular better audit and better communication between providers of primary and secondary care for epilepsy. It is intended to present a second 'Needs Document' in due course following assessment of responses to the first: the second document will have a much expanded section on primary care of epilepsy. In recent years various protocols have been produced (by various primary care groups) presenting better care plans for the m a n a g e m e n t of epilepsy in primary care and giving advice about audit, both in the UK and in Ireland 3-6. 1059-1311/94/040301 +08 $08.00/0
Attempts have also been made to audit the work of epilepsy clinics 7's and also to assess the needs and views of people with epilepsy and their families9. Epilepsy is the commonest serious neurological disability which also has far-reaching social and psychological consequences l°. Although it has its own unique features it has m a n y of the characteristics of a psychosomatic disorder 1°'11. It also shares m a n y characteristics of other chronic conditions such as diabetes and asthma, although compared with these two conditions it is relatively neglected and overly stigmatized. A general practitioner (GP) with a list of 2000 patients is likely to have around 10 patients on his or her list ordering repeat medication for epilepsy on a regular basis. Another 10 to 15 patients on the list will have had seizures in the past: perhaps one patient in the practice will develop seizures for the first time every year or so. It is likely t h a t not all these patients will be known to the GP; a proportion © 1994 British Epilepsy Association
302
of t h e m will be receiving unnecessary treatment; some patients will no longer need to take anticonvulsants although are still taking them; some patients who could be seizure-free with the right t r e a t m e n t will not have achieved this desirable state of affairs. Many patients and their medical advisors still accept a level of control which is far from the ideal (which is no seizures at all with a normal quality of life free from side-effects of medication). It is also possible that one or two patients on this hypothetical GP's list, who are receiving t r e a t m e n t for epilepsy, do not actually have the condition 2' lo. GPs who aim to improve the care of people with epilepsy within their practice will need the advice and help of hospital and specialist services for epilepsy. The ideal composition of specialist care services for epilepsy is outlined in the Needs Document 2. Basically three levels of service are envisaged in the document although provision of such services at the present time is very patchy. The first level of provision is an epilepsy clinic headed by a physician who has an interest in epilepsy (who m a y be a member of several different medical disciplines) with access to good diagnostic services including electroencephalography facilities and radiology, especially computed tomography and magnetic resonance imaging. It is envisaged that this service will give advice about patients who have just developed epilepsy and about patients who, after initial diagnosis and treatment, have seizures which do not come under control quickly. It is envisaged t h a t there will be a close relationship between the clinic and the GP: after initial assessment, diagnosis and treatment, patients will return to the care of their GP. For those patients whose epilepsy is particularly refractory, a more specialized epilepsy clinic is envisaged which has other specialist input (including neurosurgical facilities) and access to more specialist investigations, particularly electroencephalography and radiology. The third level of secondary epilepsy care is an epilepsy centre with residential facilities for more long-term rehabilitation and assessment, particularly for patients who in addition to intractable seizures have other handicaps and disabilities. Both these two more specialized centres will also need to keep in good communication with the patient's GP: ultimately even these 'specialized' patients will be returned to the care of their GP. There is a need to improve the GP's knowl-
T. Betts & K. Smith
edge of epilepsy, particuarly about modern methods of investigation and t r e a t m e n t so that those patients on his/her list who are receiving less t h a n optimum care can have their care improved. The GP will need advice about audit so that he/she can recognize those patients on the list who might benefit from different treatments. There is a need to improve the GP's awareness of what good secondary and tertiary epilepsy care is available to him/her. There is a need to improve communication between the GP and specialist care, a communication in which the patient should also share. A recent survey of the perceptions of people with epilepsy and their families in terms of epilepsy care suggested that to t h e m the disadvantages of epilepsy (Table 1) and the need for Table 1 : Patient perception of the disadvantages of epilepsy
Driving Unpredictability Employment Learning Independence Social/relationships/sex After Chappell ~.
Table 2: The patient's view of epilepsy care
Improve communication with physician More information at time of diagnosis and afterwards (from physician) Need for better information about new therapies More information about side-effects Better communication between professionals Not being left to make too many treatment decisions on their own Someone to talk to in the clinic More education for primary care teams After Chappell 9.
improvements in epilepsy care (Table 2) are very much related to the psychosocial consequences of epilepsy r a t h e r t h a n to the medical consequences of it 9. They rated very highly the need to improve communication with their physician and to improve communication between their various carers. They also rated highly the need to improve the knowledge of epilepsy and its m a n a g e m e n t in general practice. It is, of course, a mistake to rely just on the views of hospital doctors and patients and their families about how to improve epilepsy care (particularly in the primary setting), important as they are. It is very important to gain views of GPs themselves about how they feel
An epilepsy liaison service
303
about the services they provide, how they themselves might wish to improve care and what resources they feel that they will need to be able to do this.
mation to improve the care of people with epilepsy in their practices. As a result of the information-gathering exercise it became clear that the liaison service will have several functions (Table 3).
The Epilepsy Liaison Service
Table 3: What epilepsy liaison will provide
For this reason the Epilepsy Liaison Service has been set up in Birmingham under the joint auspices of the Seizure Clinic of Birmingham University (currently situated in the Queen Elizabeth Psychiatric Hospital as an outpatient and community-based epilepsy service) and the British Epilepsy Association: the project is supported by an educational grant from the Wellcome Foundation. The liaison team consists of a Consultant in Neuropsychiatry (TB) and an Epilepsy Liaison Officer
Fast track referral Audit package Managementplan } Treatment protocols Individualized Informationpacks Co-operation card Computerizedclinic record Computerizedmanagement protocol Computerizedpatient information
(KS). The project was set up in May 1993, with the aim of improving communication between secondary/tertiary care in epilepsy and prim a r y care, and developing audit packages for primary care physicians to use in their practice w h o s e patients might benefit from reinvestigation or further treatement for their epilepsy. It was envisaged that eventually, much of the work in primary care might well be done with the primary care practice nurse, particularly as there is evidence that much success has been gained in the management of diabetes and asthma in primary care by the use of the skills of primary care practice nurses. It was recognized that in a few areas in the UK, liaison nurses' posts have been developed to provide a link between secondary and prim a r y care: it is clear that the role of the epilepsy liaison nurse varies widely in those posts which have been established. Most nurses seem to be attached to a clinic and work only with the clients of that clinic, although one or two work largely in a primary care setting and have their own clinics. The role of the liaison officer in this project was initially to investigate what models of liaison between primary and secondary care in the U K already existed, to gather information from GPs and practice nurses about their needs and requirements for audit (and their current practices) and then, as a result of this information-gathering exercise, to develop appropriate materials for audit and to help the GP and the practice nurse to acquire better infor-
Fast-track referral It became clear that one of the main needs of the GPs interviewed as part of the initial liaison assessment was for an improvement in hospital services. Part of this improvement was perceived as better communication between clinic and GP (which we will refer to later) but an equally important perception was the need for the clinic to respond quickly to GPs' requests for urgent assessment (either patients with new onset seizures or patients already under c a r e - - e i t h e r by the clinic or the G P - - w h o appear to have developed some complication of treatment or a sudden increase in or change in seizure frequency or style of attack). We found, in the practices we investigated, that the average waiting time between referral of a patient with newly developed seizures and that patient being seen by the appropriate specialist might be anything from 3 - 7 months. Such an inordinate delay will often force the family practitioner (subjected to anxious pressure from the patient's family for diagnosis and treatment) to introduce some kind of treatment before the patient can be properly assessed. An effective fast-track referral system for such patients is therefore being developed for our own clinic. It is hoped when the system is fully working that all such patients will be seen within seven days of the problem presenting itself to the GP. The development of such a fast response clinic is our service's response to an expressed need by GPs: we hope this will
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encourage GPs to consider other elements of the package that we will be offering.
patient's age, previous history and current drug use.
Audit package INFORMATION PACKS Various models of epilepsy audit in primary care already exist and we are currently evaluating them. Our present audit package is based on that developed by Dr Bill Hall and Mr Brian Chappell for the British Epilepsy Association which we regard as an effective starting point for developing a more comprehensive audit package. Although it is comparatively easy to design an audit package which gathers the necessary medical information about the patient, none t h a t we have assessed contain enough details about the social and psychological care of the patient or contain measures of quality of life which are both reliable and meaningful. For most people with epilepsy, quality of life issues seem more important than medical ones 9.
MANAGEMENT PLANS/TREATMENT PROTOCOLS It is clear from our discussions with primary care physicians and nurses that they often have insufficient information to manage patients effectively (both for some of the common medical problems related to epilepsy and in terms of treatment protocols for using some of the new drugs now available for epilepsy or recognizing when a patient might be suitable for surgical referral). One particular m a n a g e m e n t problem that constantly recurred in our discussions with GPs was that of the woman with epilepsy who wished to become pregnant and who needs therefore both preconception assessment, m a n a g e m e n t of the pregnancy and postnatal management. There was an expressed need for good management plans and t r e a t m e n t protocols for primary care physicians to use in their practices and we are developing these. Our first management plan, which we will be publishing by the end of 1993, is a guide for the GP on the management of epilepsy during pregnancy, and this will be followed by treatment protocols for the use of the new anticonvulsant drugs in primary care. Desk-top publishing facilities will enable us to provide the GP either with a general plan or an individual plan related to a particular patient which can take into account, for instance, the
Primary care physicians and practice nurses welcome specific advice and information given to their patients about epilepsy, particularly if that information can be shared with the primary care team. We see one of our roles, therefore, as developing information packs for people with epilepsy which can be used either in our clinic or in a primary care setting, and which can be personalized so that they have direct reference to the particular patient and contain information which is relevant to him or her. Many patients complain that information available to them from leaflets and books is often of such a general nature that most of what they read has little application to them: with the use of our desk-top publishing facility high-quality material will be available, very much related to the patient's own case and circumstances. In conjunction with AVC Multimedia we are developing a computer information programme for patients which will be available in the clinic. It will also be available for general distribution.
CO-OPERATION CARD One of the main deficiencies in the relationship between secondary and primary care (which both ourselves and our primary care informants have identified as a main priority for change) is the poor quality of information that passes between the two and the lack of a shared information base. Even if communication is established between primary and secondary care, so that both the epilepsy specialist and the primary care physician know what each other is doing, this information is often not shared by the patient. It is saddening to interview patients who have had epilepsy for many years and who know very little about their own condition, cannot name or identify the kind of seizure they have, have no idea about the results of the various investigations they have had and have no knowledge of their treatment plan. If someone with epilepsy is going to manage his
An epilepsy liaison service
or her epilepsy properly, and co-operate with the relevant physicians, the patient and the primary and secondary care physician need to share the same knowledge base, know what the t r e a t m e n t plan is and also know who is in charge of making treatment changes. It seems to us there is a vital need for a cooperation card (rather like that used in pregnancy or diabetic care) on which such basic information is stored. We are in the process of designing such a card (our present model is presented as Appendix 1). The data on the cooperation card are comprehensive but the card folds easily and can be stored in a plastic wallet t h a t will fit into a pocket or handbag without difficulty. The patient's seizure diary is kept with the card, although separate from it. At the moment we use two types of seizure diary. If we are merely recording changes in seizure frequency and changes in medication then we use the widely used simple diary developed by Sanofi. If we need to record more details of the seizures, including a written description and also the circumstances occurring before and after seizure then we use the diary developed by the Wellcome Foundation. The diary is particuarly useful for patients who are undergoing behavioural or cognitive treatment for their seizures. It is our intention to eventually design a seizure diary t h a t would be suitable for rapid transcription to computer storage. The co-operation card as presented in Appendix 1 is almost complete. It is obviously necessary to record details of the patient, the hospital clinic he or she attends and their general pract i c e details, but we feel it will be necessary to indicate somewhere on the card who to contact in case of emergency. We are assessing the card with our patients at the moment and we will seek advice from them as to the best way of doing this. We feel in recording seizure details it is important not only to have the ILAE classification of the seizure but also a verbal description as well (future editions of the card will indicate from whom this description has been obtained). It is important to recognize that patients often have more t h a n one type of seizure and it is also important that they know what the classification of their seizures is. An important minority of patients will also have non-epileptic seizures: it is important that these are documented on the card in the same way as epileptic seizures. The card also records how the diagnosis was made and the strength
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of conviction about the certainty of the diagnosis. The results of investigations are recorded, plus where they were carried out (so t h a t further information can be obtained if necessary). In assessing the card with our patients we have been struck by the large number of patients who have no idea at all as to what investigations they have had (an affirmative reply to the question 'did they stick your head in something like a washing machine?' usually means t h a t the patients have had computed tomography!). We have found that the gathering of this information and recording it on the card often takes a great deal of effort in terms of delving into GPs' records and obtaining original hospital records, but is worth doing, particularly as it audits our management of the patient and may remind us of things we have forgotten to do. We have learnt t h a t having obtained all the necessary information it is important to fill the card out with the patient, this becomes an educational exercise for the patient (and for the interviewer). The card records whether the patient has ever been assessed for surgery (or for behavioural treatment), and what the outcome was: this avoids much fruitless effort in the clinic and duplication of investigations. Although the patient's diary will eventually contain a written and continually up-dated treatment plan, the co-operation card also records what the current treatment plan is. This means if the patient does see a strange doctor (say by arriving in casualty after a seizure) then it is possible for the treatment plan to be assessed very quickly so t h a t unnecessary changes in t r e a t m e n t are not made by doctors who do not know the patient very well. As the treatment plan changes, it will be possible to stick a replacement over this section of the card. The card also records whether investigations are ongoing or whether investigation is regarded as completed for the particular patient. This should also help to prevent duplicate investigation. The seizure diary is the best place to record present medication. It is essential to know what drugs the patient has had in the past, when the m a x i m u m dose was, why the drug was withdrawn and why the drug is not considered part of the present treatment plan. There are many experimental drugs now being tested for epilepsy: it is important to record whether the patient has been part of a clinical
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trial so t h a t when the drug comes on the market, one knows if the patient has taken it or not. The card at the moment finishes with a counselling check list on which both doctor and patient indicate by signature t h a t the particularl topic has been discussed. This is particularly important in such areas as driving and pregnancy. There have been several recent examples of litigation against doctors by patients who claim t h a t they were never told not to drive, or t h a t they were never told t h a t their particular drug might affect their unborn baby. F u t u r e editions of the card will contain space to record other illnesses and disabilities in a different way from the present card. It will also contain space for a DSM IIIR classification of any mental illness t h a t the patient may have. Space will also be available for prominently recording known drug hypersensitivities and allergies plus an account of any known untoward reactions to drugs. There will also be an indication of what pensions, benefits or grants the patient is receiving and the date on which they were granted. Some simple numerical expression of a quality of life measure m a y also be contained in this section. The present card does not contain information about blood-level monitoring: such data are not contained on the seizure diary but a future edition of the card will contain a statement as to whether this is considered desirable or not.
COMPUTERIZED CLINICAL RECORDS We are also developing, in conjunction with AVC Multimedia (adapting the successful Amigos Package) a computer program for use in r u n n i n g an epilepsy clinic (CATE). This is a multimedia computer programme designed to store relevant information about patients in an easily accessible way (including digital images) and which will also take over m a n y of the chores of r u n n i n g a clinic in terms of producing standard letters, appointments, etc. A fully computerized clinic record (which will eventually mean t h a t our present cumbersome, untidy, easily 'lost or damaged clinic notes will no longer be needed) will eventually be accessible to the patient's GP. It is our intention t h a t when our clinic is fully computerized the information contained on our database about a particular patient will be given to t h a t patient and also to the patient's GP. The GP will have access to the
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clinic data either via a modem or by the exchange of software (stringent efforts will be needed to prevent transfer of computer viruses). The patient will also have a copy (on suitable software) of their own information. We feel it likely t h a t eventually our cooperation card will be in computer disc form. Eventually we hope t h a t a n y t h i n g recorded by the GP about his/her patients in his/her own surgery can be readily accessed and stored by our clinic and vice versa: this will rapidly improve communication between secondary and primary care. It is becoming apparent t h a t this will be one of the main thrusts of the liaison project over the next two or three years.
CLINIC MANAGEMENT PROTOCOLS Eventually development of computerized clinic m a n a g e m e n t will mean t h a t new doctors working in the clinic will have ready access to an individualized t r e a t m e n t protocol for particular patients based on a pre-existing clinic protocol. We are developing such a computer package for the physician with AVC Multimedia. It will also, of course, be possible for the GP (and indeed the patient) to access such m a n a g e m e n t protocols without breaking confidentiality.
CONCLUSION We have therefore outlined the present status of our liaison project and our plans for the future. Our interest in providing information for both GP and patient, and providing advice about audit to help the GP identify those patients t h a t could benefit from being rereferred or re-investigated, naturally led us to look at our own practice: we have come to realize t h a t one of the best ways of improving the care of people with epilepsy in primary care is to improve care and communication in the secondary clinic and develop ways of rapidly and effectively sharing the information we collect about patients with their primary care physician and the patients themselves. We will happily provide further information about the computer programmes, co-operation cards and audit packages as they develop.
ACKNOWLEDGEMENTS We gratefully acknowledge the help and interest of Dr Bill Hall, Mr Brian Chappell, the Wellcome Foundation and AVC Multimedia.
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