NHS services for epilepsy from the patient's perspective: a survey of primary, secondary and tertiary care access throughout the UK

The aims of this study were to estimate the proportion of patients with epi lepsy who made primary care and/or hospital outpatient medical consultation s within 1 year; to formulate a model of the explanatory variables that inf luence whether patients consult or not; and to estimate the frequency of re ferral to, and waiting time for, hospital outpatient clinics in patients wi th new-onset seizures. Suggestions are offered for improvement of epilepsy services based on the findings. A questionnaire was distributed to 3455 unselected patients identified at p opulation level from primary care practices in all NHS regions of the UK. There were 1652 respondents with epilepsy of all types, irrespective of aet iology, duration or severity. Fifty-two per cent of the whole sample made a t least one medical consultation of any type specifically for epilepsy (42. 0% primary care, 30.5% hospital, 20.4% both). Most patients with controlled epilepsy (74.5%) had no consultations. Of patients with severe epilepsy, 2 7.5% made no primary care consultations, 43.4% no hospital consultations an d 14.1% no consultations of either type. Gender did not influence the likel ihood of either GP or hospital consultations in patients with either contro lled or active epilepsy. Increasing seizure frequency was associated with a greater likelihood of one or more hospital consultations for epilepsy, whe reas increasing duration of epilepsy was associated with a decreased likeli hood of either type of consultation. Age affected consultation rates: of th ose patients over the age of 65 years, only 29.9% made a medical consultati on for epilepsy, compared to 53.8% of young adults. Patients under the age of 17 years were less likely to have consulted a GP and more likely to have consulted a hospital doctor. Ninety percent of new-onset patients had been referred to a hospital doctor , and the mean wait was 6.5 weeks. In conclusion, many patients with epilepsy, including severe epilepsy, are not receiving specialist input, and a significant proportion are receiving no medical supervision. The elderly are over-represented in this group. Car e tends to be polarized between hospital or primary care, falling short of the ideal of shared care. It will be important to address the influences on consultation seeking in epilepsy, particularly for those patients currentl y under no medical supervision. (C) 2000 BEA Trading Ltd.