Examining a community model of epilepsy care for people with learning disabilities.
OBJECTIVE
To assess the use of specialised medical epilepsy services by people with learning disabilities (LD) and epilepsy in a community healthcare setting, to compare medical epilepsy care in this group to current management guidelines, and to contrast important outcomes with those achieved in different healthcare settings.


METHODS
Postal survey with a carer completed questionnaire addressed to all adults with epilepsy registered on an LD register in Sheffield, UK (n=442).


RESULTS
An analysis based on 225 returned questionnaires revealed that 22.7% of individuals with LD and epilepsy had been free of seizures for over 1 year. 95.1% were taking antiepileptic drugs (AEDs), 46.2% had had an EEG, and 41.3% a brain scan. 53.3% of diagnoses had been made by epilepsy experts, 38.7% of individuals with LD and epilepsy were under specialist review. Although patients with more severe epilepsy were more likely to be under specialist care, 60.6% of patients with ongoing seizures, 57.9% with major seizures and 68.7% of individuals taken to hospital with prolonged had no access to specialist advice.


CONCLUSIONS
The proportion of people with LD who achieved seizure-control in the described population was lower than in all previously reported studies of LD patient groups. The poor outcome in terms of seizure-control, the lack of access to the epilepsy specialist service, and the apparent under-utilisation of investigations indicate that there are grounds for serious concern about this community model of medical epilepsy care for people with LD.
Reuber
M
M
Sheffield Teaching Hospitals NHS Trust, Department of Neurology, Royal Hallamshire Hospital, Glossop Road, Sheffield S10 2JF, United Kingdom. markus.reuber@sth.nhs.uk
Gore
J
J
Wolstenhome
J
J
Jonas
P
P
Frankson
C
C
Murray
C
C
Styring
L
L
D000293:Adolescent; D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D000927:Anticonvulsants / Q000627:therapeutic use; D003153:Community Health Services; D004827:Epilepsy / Q000150:complications* / Q000628:therapy*; D005260:Female; D019538:Health Care Surveys; D006297:Health Services Accessibility / Q000706:statistics & numerical data; D006801:Humans; D007859:Learning Disabilities / Q000150:complications*; D008297:Male; D008875:Middle Aged; D017146:Models, Organizational; D010820:Physicians / Q000706:statistics & numerical data; D011795:Surveys and Questionnaires; D016896:Treatment Outcome; D006113:United Kingdom
D000927:Anticonvulsants