[1] 9w Epilepsy in Primary Care Perspectives from a Developed Nation

[1] 204w Epilepsy is the most common serious neurologic disorder, affecting 350,000 people in the United Kingdom. There are five neurologists per 1,000,000 population, which is better than in India but much lower than in other developed nations. Thus, a patient's day-to-day prescribing, supervision, and support depends on primary care. In the U.K., patients are entitled to register with a genereal practitioner (GP), who has an average of 1,841 patients. Seventy-eight percent of patients will consult their GP annually. Patients in the U.K. find that GPs are accessible and have good communication skills. There is, however, inadequate time in short consultations to provide the quality of care suggested by the latest review of services for patients with epilepsy (CSAG). This is further complicated by the heterogeneous and stigmatising nature of the condition. An improvement in the process of care in the primary-care setting can result from three important strategies: appropriately trained practice nurses running practice nurse-led clinics; structured management of care, possible because of the unique system of registration, which facilitates audit, prescription monitoring, and recall; and, finally, improved teamwork and communication based on protocols locally agreed upon between primary and secondary care. The future will tell whether these initiatives will improve the outcomes of care.

[1] 13w Figure 1 summarises the role of the GP at different stages of epilepsy.

[1] 141w In the current healthcare system in the United Kingdom, every citizen is entitled to register with a general practitioner (GP) from whom they will receive medical care, which is free at the point of delivery. A GP has an average of 1,841 patients (1). GPs provide familycentred medicine and on average will see 78% of their patients at least once annually (2). They act as gatekeepers to the service. In the main, patients must be referred by a GP to hospital-based specialists. GP practice has evolved over the past 5 decades from single-handed GPs doing everything themselves to group practices of four to five doctors on average, often with a number of attached administrative staff and nurses. The latter are now taking on important roles especially in relation to the management of chronic disease, such as asthma, diabetes, hypertension, and epilepsy.

[2] 58w Epilepsy is the most common serious neurologic condition, affecting an estimated 350,000 people in the United Kingdom (3). The usual worldwide prevalence figure that is quoted for active epilepsy is five to 10 per 1,000 (4). Accordingly each GP will have between 10 and 20 patients with epilepsy and will expect one to two new cases per year.

[3] 49w In the United Kingdom, there are five neurologists per 1,000,000 population. This is a better patient-neurologist ratio than that in India, but it is much lower than that in other developed nations like Italy (5,6). The day-to-day care of patients with epilepsy lies with general practice and primary care.

[4] 66w Several reports in relation to the quality of services for patients with epilepsy have been published in the last decade or so. The Clinical Standards Advisory Group (CSAG) report (6) states that the GP has a central role in the provision of care for patients with epilepsy. It points out that epilepsy is not a condition that should or could be managed in general practice alone.

[5] 61w For patients who have newly diagnosed epilepsy, the GP is often the first to suspect epilepsy and may be best placed to obtain a first-hand witness account of any possible seizure activity. This may involve tracking down an eyewitness to obtain accurate accounts. It is likely that the GP will also have prior knowledge of the medical history and family details.

[6] 24w Address correspondence and reprint requests to Dr. K. Redhead at St. James Medical Practice, County Court Road, King's Lynn PE30 5SY, U.K. E-mail: keith@redheadk.freeserve.co.uk

[7] 63w In the setting of a developed nation, it is recommended that all patients suspected of having a seizure be referred for the best available specialist service within traveling distance. Standard protocols could be used to confirm diagnosis, to arrange investigations, and to commence treatment. It is vital to advise the eyewitness to accompany the patient to the specialist appointment if at all possible.

[8] 124w Diagnosing epilepsy is not an easy task, and such evidence can be essential to aiding diagnosis. The report suggests that treatment should be withheld at this preliminary stage unless the patient has two or more seizures. This is a period of great anxiety for patients and carers, and they require much support and information, especially because waiting times for specialist consultation and investigation can be quite long in some countries, including the United Kingdom. Advice on sources of information, meetings with nurse-specialists, and contact with self-help/voluntary groups may serve to ease this process. What patients are told at this stage may have an important influence on how they come to terms with their condition, and on how they comply with treatment in the future.

[9] 104w For patients whose seizure control is suboptimal, a management plan should be formulated jointly by the hospital and general practice. In the United Kingdom, it is generally the specialist who writes the plan. The GP is then responsible for drug prescribing and therefore is best placed to assess the efficacy of the drug treatment and be on the lookout for side effects. During routine visits, the GP should monitor drug dosage, seizure frequency, and compliance. There is clearly a need for continued support for patients; here again, there is an important role for the specialist nurse, and the support of self-help groups/voluntary organisations (7,8).

[10] 121w These patients form a significant proportion of adult patients in the community who have a received a diagnosis of epilepsy. Of patients with epilepsy, 70% will have the potential for becoming seizure free (9). If the seizures are well controlled and treatment is stable, the patient is unlikely to need regular hospital appointments and will be referred to the GP. The CSAG report recommends that practices have a register of patients with epilepsy so that review can be offered annually to document drug dosage and regimen, adverse events, driving regulations, and to consider preconception and contraception issues and discontinuation of antiepileptic drugs (AEDs) where repeated referral may be considered. Supportive services and information are important in this regard, as mentioned previously.

[11] 36w Governments in the United Kingdom have strong sense of their own priorities. Service provision for pa- tients with epilepsy is fragmented, and there is a lack of commitment to the commissioning of specific epilepsy services (3).

[12] 56w Many neurologists, especially those in district general hospitals, are working single-handed and working without specialist epilepsy nurse support. They may be facing increasing pressures from increased referral rates for many other neurologic problems (J. Brown, unpublished observations). Further, access to investigations is slow, and there are deficiencies in relation to communication between specialist and primary care.

[13] 239w On average, appointments in primary care last 7.5-10 min in the United Kingdom. Therefore, there is little time for monitoring or performing the duties as suggested earlier. The CSAG report found that although patients were satisfied with GP accessibility and communication skills, many did not consult their doctor specifically about their epilepsy on a regular basis. This is further emphasised by audit, which has shown that GPs did not document seizure rate well (10). This suggests that although patients with epilepsy do see their doctor every year, the subject of epilepsy may not be discussed or recorded. GPs themselves feel they need ready access to specialist advice regarding diagnosis, treatment changes, and technical aspects of care. Epilepsy is a heterogeneous condition, and each GP has relatively few patients with the condition and therefore may not gain enough experience to feel confident to gain or maintain expertise. Some GPs may be working in isolation and may not be reminded about the importance of regular monitoring and data collection. Rapid advances in treatment protocols and the introduction of new drugs often result in the GP finding the new regimen suggested by the consultant difficult to implement, or the complications difficult to manage. In the United Kingdom, there are variations in local health authority prescribing guidelines with regard to approved AED therapy, and logistical problems therefore for the GP in continuing a newer AED initiated in hospital but unfamiliar to primary care.

[14] 98w Epilepsy is a stigmatising condition (11). This may lead to patients being overprotected; it certainly has an effect on their daily lives, reducing the chances of employment, marriage, and children. The consequences of the condition (such as loss of driving, etc.) may lead patients to hide seizure frequency from their doctor (12). It also may lead to loss of compliance. It is reported that 40% of patients in developed countries do not take AEDs properly and adopt their own self-regulation practices (13,14). Surveys show that even where a service exists, mainly problems of a psychosocial nature continue (15).

[15] 157w There is a need to strengthen both primary and secondary care, which are mutually dependent. Both of these can be achieved through improved teamwork. There are too few neurologists to manage the condition independently. More neurologists themselves may work in isolation, and although they provide excellent evaluations, the wait for patients may be long, and there is little time for counseling and discussion, which is such an important part of the consultation process. Within the pattern of care, patients may receive advice and counseling about the consequences and social implications of epilepsy, but there is generally no accepted way in which specialists or generalists take responsibility for and allocate time to the provision of this advice (16). Models of the use of epilepsy liaison nurses working with neurologists in the United Kingdom (17) have strengthened secondary care. The nurses themselves can then be active in the community, visiting primary care, and educating patients, practice nurses, and GPs.

[16] 105w Within primary care, a structured management for patients with epilepsy is required to do the job properly (18). With such short consultations, there is little time for adequate counseling or discussion. There are models for nurse-led clinics for patients with epilepsy (19). These are well attended, and they have been shown to improve level of advice, reduce hospital admissions, A&E attendances, and emergency call-outs. Such clinics require disease register, prescription register, recall system, computer reminders, and may stimulate locally agreed protocols. The unique system of patients registering with general practitioners in the United Kingdom allows audit and has been shown to produce important research (20,21).

[17] 69w Such organised care will emphasise the importance of opportunistic recording of seizure status when patients are seen and facilitate certain aspects of care. An important example of this is women and epilepsy and the responsibility of GPs to ensure that patients are aware of preconception advice, the risk of oral contraceptive pill failure because of drug interactions, the risk of foetal malformations, and the benefit of folic acid (22).

[18] 30w The future will reveal whether improved teamwork and communication between primary and secondary care and management plans based on locally agreed-on initiatives will improve the care of patients with epilepsy.