Abstracts

Rationale: The epileptologists, neuropsychiatrists and nurse practitioners of the Northeast Regional Epilepsy Group(NEREG) took note as each of their patients recounted persistent and multiple challenging life issues created by their epilepsy and concurrent seizure activity. Office visits and hospital stays involved discussions about safety during seizures, medication costs, medical insurance, feelings of depression and anxiety, driving regulations, cognition difficulty and its effects on school performance, stigma and employment options, and more. In an effort to treat the whole patient, to empower their potential to achieve optimal seizure control through the reduction of stressors and to influence their capacity to create and maintain a substantive life, a specialized pilot advocacy program was created. Methods: 2007 advocacy program notes were maintained, tracking participant involvement and reviewed to determine inferences that could be drawn about the effectiveness of the program in place and a possible mandate to continue and/or expand. Results: The total number of program participants was 212. Referral sources for participants were: NEREG doctors 142(67%), Support Groups 9(4%), RNs 9(4%), Education Department 19(9%) and other 33(16%). 160(76%) individuals were self-referrals, 43(20%) were parents for their children, and 9(4%) were initiated by a spouse for a partner. 134(63%) females and 78(37%) males sought support. Patients sought support for: educational advocacy 37(17%), information and referral 33(16%), employment 81(38%), social work 70(33%), support groups 23(10%), mental health assistance 21(10%), Veteran’s assistance 3(1%) and driving information and assistance 35(17%). All participants received the advocacy services they requested, queries were resolved, linkages to system service providers were made, and interventions were executed. Conclusions: The data illustrates that the NEREG advocacy program unquestionably fills a significant need for patients and their caretakers as indicated by the number of participants and their inability to obtain support elsewhere. Although there are service providers for individuals with disabilities, applicants are required to fit into a specific funding structure that is determined by the nature, age of onset and degree of impairment. Based on these criteria for services, many people with epilepsy are ineligible and are either denied services or given minimal supports. The services NEREG provides offer comparable life-links to individuals with epilepsy that promote independence and personal growth. Outgrowth of the program, as requested by patients, was support groups and epilepsy education programs to the community at large, individual patients and schools. While barriers to services remain, effective patient supports are best provided by those directly involved in their care.