Study by National Epilepsy Centre highlights reduction in Treatment Gap and Stigma through volunteers


Study by National Epilepsy Centre highlights
reduction in Treatment Gap and Stigma
through volunteers

Karachi: National Epilepsy Centre, Karachi has recently published a manuscript highlighting 30 years of sustained effort by a group of volunteers in reducing Treatment -Gap and Stigma in Pakistan It has been published under the title of ‘Epilepsy Treatment Gap and Stigma reduction in Pakistan; a tested public awareness model’ in the journal ‘Epilepsy & Behavior’.

The design and approach of this achievement is unique; has never been used by any other country, based on indigenous modulated approach built around the prevalent health structure, within financial and human resource constraints and proves its success through outcome measures. The entire effort has achieved by a group of volunteers (medical and concerned citizens) financed by local donors, without any assistance of the government, foreign aid or technical support of any agency or epilepsy organization. Our work has already been presented at various meetings of International League Against Epilepsy & International Bureau of Epilepsy and has been highly appreciated says a communication received from Prof. Hasan Aziz, Emeritus Prof. of Neurology, Jinnah Postgraduate Medical Centre who is also Chairman of National Epilepsy Centre, JPMC, Karachi, Pakistan.

High epilepsy treatment gap (ETG) and stigma it may be mentioned here remain a major issue globally. According to the 1987 population-based study, prevalence of active epilepsy in Pakistan was 0.98% with 98.1% ETG in rural and 72.5% in urban population and the presence of stigma. Recognizing the problems faced by people with epilepsy (PWE) in Pakistan, a group of volunteers mostly from the medical community attempted to address these issues with an ongoing sustained awareness program over the last 18 years, working within the constraints of prevailing healthcare system. Their efforts have achieved gratifying results. In 2001, the Comprehensive Epilepsy Control Programme of Pakistan (CECP) was launched through an NGO to address the various paucities in knowledge, attitude, and practice about epilepsy; especially ETG and stigma. The CECP has two primary components: Epilepsy Support Pakistan (CECP-ESP) for awareness and mass education and National Epilepsy Centre (CECP-NEC) for holistic management of PWE, professional education, and research. A significant reduction in ETG and stigma has been achieved exclusively through public awareness. This model can be easily replicated by any country, with involvement of the local population. This programme can be easily replicated in any other country having limited resources.

Ref: Epilepsy & Behavior 102 (2020) 106637.

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