Benefits of the epilepsy specialist nurses (ESN) role, standardized practices and education around the world.

Epilepsy, often considered as a stigmatizing disease, affects 65 million people worldwide and is frequently associated with comorbidities that increase both direct and indirect costs. The degree of impact on quality of life and the cost of care differs depending on the social and health care organizations in place, political, medico-economic and/or socio-cultural contexts. Across the globe, healthcare is provided by nurses in primary care, urgent or emergency care, and within specialized domains of practice. In Epilepsy the global care could be enhanced by developing standardized nursing education in close collaboration with other caregivers. The impact of epilepsy nursing care has been documented in some developed countries, but the diversity of nursing practices and professional education of nurses raise difficulties in generalizing these findings. Specialized education in epilepsy will improve access, treatment and ultimately the quality of life of patients.

Epilepsy health consumer groups and charities; how representative of patients are they? The results of a pilot study.

PURPOSE: In the United Kingdom all health care providers are encouraged to consult with user groups. The submissions of charities and patient advocacy groups to NICE and SIGN are considered reflective of the patient groups they purport to represent, yet little is known about how representative they are. This pilot study was designed to ascertain how many patients attending a hospital based epilepsy clinic were members of such advocacy groups. METHODS: Patients were asked to complete a brief 9-question questionnaire before they left the clinic. RESULTS: One hundred and twenty-five questionnaires were distributed, of which 101 were returned. Seventeen percent of patients were members of advocacy groups, with several being members of more than one charity/group. Only seven percent of the respondents had ever been contacted by an advocacy group to canvass their opinions. Seventy percent of patients questioned stated they thought a frank discussion with their physician, or specialist nurse was more likely to influence patient services. Patients with long duration of disease and taking multiple anti-epileptic drugs were more likely to be members of charity/advocacy groups. CONCLUSIONS: As patient charities in the U.K. are often in receipt of public funds, and actively seek to influence public policy this raises the question of whether they should be required to consult more widely with the people they claim to represent.