Abstracts

Rationale: In a community-based epilepsy service for people with intellectual disabilities (ID) serving a predominantly rural population of 0.5 million in Cornwall, UK, 19 patients with ID and refractory epilepsy have had VNS therapy. Operations are carried out at the Regional Neuroscience Centre in Bristol, UK, which is between 150-200 miles away from the area in which the epilepsy service is based. The need for frequent brief follow-up appointments at the Neuroscience Centre presents serious problems for travelling, especially for those whose behaviour can challenge in unfamiliar environments and who have difficulty tolerating long journeys. Specialist clinicians at the Neuroscience Centre involved in the VNS follow-up were not routinely involved in the day to day management of the person’s epilepsy, necessitating close attention to communication and liaison between the 2 teams separated by such large geographical distance. Methods: Subjects were aged between 13 and 51 years at implantation. The longest follow-up is 10 years to date. Since 2007 we have provided the follow-up VNS parameter adjustment service locally, training 2 epilepsy specialist nurses to incorporate this into their normal community work. VNS checking and ramping is usually carried out in people’s homes, in a familiar and comfortable environment, by clinicians with whom they have a long term trusting relationship. In addition to the usual considerations in adjusting the device, magnet activiation is checked against seizure records and has been useful in determining accuracy of carers’ recordings, and provides opportunities for further training of carers. Results: No-one has become seizure-free, although reductions in seizure frequency of up to 80% have been observed, with greater improvements related to longer follow-up. Use of rescue benzodiazepine medication to abort prolonged and cluster seizures is reduced. There has been a consistent finding of improvement in seizure severity and duration, as well as improved levels of alertness and mood, in accordance with previous observations. Conclusions: VNS in this population is safe and well tolerated, and is associated with improvements in the severity of epilepsy and in other factors relating to quality of life. Follow-up for device checking and ramping of settings can be incorporated successfully into community-based or domestic environments for this group of patients.