Abstracts

Rationale: The patient advocacy arm of the Northeast Regional Epilepsy Group (NEREG) of epileptologists, neuropsychologists, nurse practitioners, researchers, dieticians and a comprehensive EEG department was established three years ago. The initial goal of the practice was to create a unique in-house system of treating the whole patient by offering supports outside of the clinical arena that included community and individual epilepsy education, systems advocacy, employment interventions and support groups. A slow start was followed by a sharp increase in patients reaching out for help as they were unable to find services elsewhere. Many of the familiar service agencies lost program funding, were forced to deplete their workforce, or excluded epilepsy patients based on funding structure and acceptance criteria. Methods: Patient advocacy requests and outcomes were maintained from 2007 through 2009 in an effort to track specific patient life issues that required intervention. The purpose here was to determine the essential functions of the NEREG advocacy program and the need to modify or augment specific interventions. Results: This three-year retrospective yielded surprising statistics, with 2009 showing a significant rise in requests by NEREG patients. Outreach for assistance increased: 2007(190); 2008 (212); 2009 (1,094). Identified patient issues remained consistent, with a dramatic increase in the number of patients seeking support: Benefit issues: 2007 (99), 2008 (79), 2009 (281). Driving Issues: 2007 (35), 2008 (35), 2009 (130). Employment Issues: 2007 (81), 2008 (81), and 2009 (137). Epilepsy Education: 2007 (33), 2008 (33), and 2009 (163). Mental Health Issues: 2007 (21), 2008 (21), and 2009 (71). Personal Issues: 2007 (1), 2008 (11), and 2009 (46). Recreation Issues: 2007 (0), 2008 (1), and 2009 (15). School Issues: 2007 (37), 2008 (37), and 2009 (136). Support Groups: 2007 (23), 2008 (41), and 2009 (93). Transportation Issues: 2007 (0), 2008 (4), and 2009 (22). Conclusions: A significant spike in the total number of service requests appeared in 2009, with patients struggling in all areas of life. Benefit acquisition showed the most substantial rise. Patients wrestled with attaining Social Security Insurance, Social Security Disability Insurance, Medicaid, Medicare, housing subsidies, in attaining affordable medications, and in affording medical insurance and/or the increased co-payments for service. This study in services to epilepsy patients highlights the need for acceptance of this advocacy model by other institutions. The positive outcomes patients experience lend to excellence in patient care.