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East Timor Epilepsy Project

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Background

John Dunne (centre front) and Ernie Somerville (fourth from right) with nurses in Aileu, East Timor.

Most people living in East Timor with epilepsy do not receive treatment. Burns from falling in open cooking fires during seizures are common, as are drownings while fetching water or bathing in rivers; children with epilepsy do not go to school. The reasons for the high treatment gap are the traditional belief that epilepsy is a supernatural phenomenon rather than a medical condition And the lack of trained medical personnel.

In May 2004, the ESA agreed to fund six visits per year by a neurologist to East Timor to improve the care of people of with epilepsy. The aim of the East Timor Epilepsy Project (ETEP) is to disseminate knowledge in the community that epilepsy is a medically treatable condition, and to train East Timorese health workers in diagnosis and management of epilepsy. There are two key elements in the program:

• Nurse Training
  Groups of 10 nurses spend 2 days learning how to use flowcharts to diagnose and treat generalised tonic-clonic seizures. Training is hands-on, using a small number of Timorese patients.
• Community Education
  Workshops for community leaders and “health volunteers” are aimed to make the community aware that epilepsy is a treatable condition and that nurses in theirn community have been trained to treat it. Community radio advertisements are also run.

The project aims to build capacity among East Timorese health workers to treat and manage epilepsy without being dependent on expatriate specialists.

ETEP is funded by the Epilepsy Society of Australia, Pfzier, sanofi-aventis, UCB Pharma, GlaxoSmithKline, Epilepsy Action, AusAID, and the East Timor Ministry of Health.