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Awareness is the first step towards a change

In under-resourced countries like Pakistan overall epilepsy care is poor. Inadequate medical treatment due to multifaceted problems including, heightened social stigma, lack of awareness, poverty, deeply rooted societal misconceptions, poor health infra structure, insufficient number of specialist, all enhance the physical and psycho-socio-economical tribulations and marginalization of people with epilepsy (PWE). Governmental priorities and resources (financial/human/technological) are directed towards commoner infectious diseases ignoring epilepsy. Help from civic-society and welfare associations is usually unavailable due to lack of awareness about epilepsy and the associated stigma keeping the ill-informed away.

Epilepsy Support Pakistan (CECP-ESP) is an all-Pakistan-based outreach project of CECP for continued and sustained public awareness working in tandem with National Epilepsy Centre (CECP-NEC).  CECP-ESP is the full voting chapter of International Bureau of Epilepsy (IBE).

Changing the Nation’s Mindset Towards Epilepsy and Patients with Epilepsy

The prime objective of CECP-ESP is to change the mindset of the nation towards this disorder through intense and sustained public awareness campaign. CECP-ESP volunteer doctors over the last two decades have planned and executed various indigenous methods for epilepsy mass awareness with much success. We started small, remain flexible to replace some older not so effective activities with newer ones whilst the other time-tested successful activities continue to run in tandem with the new ones.

Our prime objective is achieved through intense public awareness about epilepsy and its treatability, training primary care physicians (PCP), postgraduates and paramedics in better understanding and management of epilepsy to help provide basic clinical services to PWE at their doorsteps and helping them liaison with epilepsy specialists of CECP-NEC when required. Various projects undertaken to achieve our aims and objectives include:

Public Sensitization Through a Short, Bulleted Message

  • Effective slogan coined to be used for all awareness activities.
  • Epilepsy Awareness Stickers on nationwide fleet of ambulances, intercity
    buses, intercity cargo trucks, oil tankers, and other vehicles.
  • Graffiti, billboards, roadside banners.
  • Distribution of awareness pamphlets at epilepsy awareness programs, market place, public transports, waiting areas of intercity bus terminals, railway stations, busy traffic signals, banks, supermarkets, outside mosques, and waiting areas of PCP clinics.
  • Distribution of slogan-engraved souvenirs in various awareness programs.
  • Radio transmission of awareness messages several times a day on especially on
    designated days.
  • Awareness ticker on cable television during prime time.
  • Rickshaw awareness campaign; placement of awareness banners on
    this most used public transportation mode.
  • Epilepsy awareness rickshaw train; 10 rickshaws completely redesigned for epilepsy
    awareness purposes, plied on roads in a trail, stationing for some time at public places on route and distribute awareness material.
  • Setting up of epilepsy awareness booths on weekends at large busy malls that are frequented by families. Awareness done through fun and games.
  • Epilepsy awareness booths at health expos.
  • Epilepsy awareness walks.
  • Epilepsy awareness kite-flying festivals (kites with printed awareness slogan).
  • Art Competition for school children with the topic epilepsy.
  • Awareness through short live-enacted drama in public spaces.
  • Bringing local famous PWE out of shadows and help boost our campaign.

Spreading of Detailed Information on Epilepsy

  • Through print and electronic media; newspapers, magazines, national and private television channels.
  • School Awareness Workshops for teachers and senior students.
  • Awareness workshops at colleges, medical and other universities.
  • Especially designed illustrated Epilepsy Awareness Posters with display life of more than 6 months were affixed in schools and public places nationwide.
  • Awareness workshops for state employed Lady Health Visitors.
  • Specialist talks on morning shows of Pakistan Television’s news and its global channels, with live interactive sessions with the viewers. These programs are widely watched by nonworking household members.
  • Live interactive interview on popular FM radio channels widely heard by school going children and people on way to work.
  • Specialists Meet the Press sessions.

Structured District Module

  • Week-long epilepsy awareness activities.
  • Sequential replication in each district of the country.
  • Nonmedical volunteers on location execute and monitor six days’ intensive public awareness activities through various modes in the entire district like banners, announcements from mosques, epilepsy awareness documentary telecast by local cable operators, graffiti, and flyer distribution. Most important mode being loudspeaker-mounted vehicles (usually two rickshaws) decorated with awareness banners playing the prerecorded short epilepsy awareness messages, plying through every nook and corner of the district, halting at crowded public places.
  • Free epilepsy camp on day 07 (a Sunday) by volunteer CECP neurologists at a public hospital or a popular PCP trained in epilepsy management.
  • No AED distribution.
  • Epilepsy update workshop for local primary care physicians.

Paid Telecast of a Short Comprehensive Television Documentary for Countrywide Awareness to Change the Nation's Mindset and Reduce Stigma

Television has reached the homes of masses in every nook and corner of the country making it easier to disseminate our awareness message. It has proven to be time and cost effective with a much wider geographical reach as compared to the previous physical activities of limited volunteer neurologists in a selected region. Also visual memory is more impactful with long memory retention especially when viewed a multiple time over a short period.

  • Paid telecast of a short educational & noncommercial documentary has been produced in Urdu, English, Sindhi, Pushto and Balochi and being aired on popular satellite television channels since 2012. Frequency of each telecast is twice daily for three months (due to lack of funds we are now constrained to one month’s telecast). This documentary was produced by NEC through a financial grant from M/S. Novartis (Pakistan) who also sponsored the initial paid telecasts. Following paid telecasts is being possible through support of other individuals and organizations.
    The current documentary used for NGO’s awareness programs has been produced by Mr. Saeed Shiraz & Late Mr. Pervez Bashir gratis for the NGO.
  • Also displayed at ILAE booth, during various ILAE international conferences.

    To change the nation’s mindset sustained awareness is a must for which repeat telecasts are required.

Watch in Urdu

Watch in Balochi

Watch in Pushto

Watch in Sindhi

Awareness Activities Through Social media

Social Media is the new informal popular way of communication and we are using it to create awareness.

Awareness without action is worthless

PHOTO GALLERY

Rabia Aziz Rizvi - Special Needs Pakistan In conversation with
Dr. Zarine Mogal

Epilepsy: Symptoms, stigmas struggles and success stories
May 19, 2020
Special Needs Pakistan run by Rabia Aziz Rizvi provides a platform and a resourceful network for all people with special needs and their care givers. The platform provides information about medical facilities and their motto is to promote compassion, tolerance, love and looking beyond social negativities. A special session for epilepsy was held on May 19th. Dr. Zarine was joined by Prof Hasan Aziz and all aspects of epilepsy from clinical presentation to social injustice faced by the people with epilepsy was discussion during the 30 minute session.

Epilepsy Tea (E – Tea)

April 13, 2020

Neurology Research & Patient Welfare Fund organized a small gathering to introduce the NGO, CECP-NEC and CECP-ESP to a group of concerned citizens of the city. The basic aim of this event was to invite people of good standing and motivate them to volunteer in creating awareness about epilepsy and help raise funds for epilepsy-related activities. The group was shown a documentary elaborating the NGO and its epilepsy-related activities, followed by a Q & A session. The event was graciously hosted by Mr. and Mrs.Qaiser Columbowala.

Managing Committee of NRPWF

President

Prof. Hasan Aziz

Vice President

Prof. Shaukat Ali

Secretary

Dr. Zarine Mogal

Treasurer

Dr. Hiba Mahmud

Managing Committee

Mrs. Masuma Lotia
Ms. Mariam Halai
Ms. Firoozeh Mogal
Ms. Lubna Ayub
Prof. Syed Wasim Akhtar
Dr. Abdul Latif Mian

Auditors

T. Ali & Co.

UK Chapter

Dr. Uzma Choudhry

WE NEED
YOUR SUPPORT
Lack of awareness, misconceptions, stigma & marginalization cause more misery than the condition itself. With medical, social & psychological treatment, public awareness to change the public mind-set is necessary. National Epilepsy Centre (NEC). Karachi, operational since 2012 is the only tertiary care centre in Pakistan exclusively for holistic epilepsy treatment, education, research and public awareness.
FLYER-POPUP
OUR WORK
ACKNOWLEDGED INTERNATIONALLY

Our landmark paper, Epilepsy treatment gap and stigma reduction in Pakistan: A tested public awareness model was published in a reputable medical journal in end Dec 2019. The paper was received with accolades from entire medical especially neurology community for its groundbreaking approach towards reduction of treatment gap in a poorly resourced country.