In under-resourced countries like Pakistan overall epilepsy care is poor. Inadequate medical treatment due to multifaceted problems including, heightened social stigma, poverty, lack of awareness, poor health infra structure, insufficient number of caregivers, all enhance the physical and psycho-socio-economical tribulations and marginalization of people with epilepsy. Governmental priorities and resources (financial/human/technological) are directed towards commoner infectious diseases disregarding epilepsy and likes. Help from civic-society and welfare associations is usually unavailable due to lack of awareness about the epilepsy as well as associated stigma.
Comprehensive Epilepsy Control Programme of Pakistan (CECP) is an all-Pakistan-based outreach project of Neurology Research and Patient Welfare Fund (Reg. No. DSW-360 dated 12-03-1989) for continued and sustained public awareness. Launched in March 2001, CECPhas patronage of the “Global Campaign Against Epilepsy”, a joint venture of the International League Against Epilepsy (ILAE) and International Bureau of Epilepsy (IBE); in collaboration with WHO. CECP is a formal extension of the ongoing however, not so regular awareness activities under the Founder President of NRPWF and then Head of the Department of Neurology, JPMC since 1985. CECP fulfills the awareness need of the National Epilepsy Centre (NEC).
Aims of CECP
- To increase public awareness about epilepsy and its treatability
- To provide clinical services to the patients with epilepsy at their doorsteps
- To train primary care physicians (PCP), postgraduates and paramedics in better understanding and management of epilepsy.
CECP Public Awareness Campaign – TO CHANGE THE NATION’S MINDSET
Intensive and sustained public awareness campaign by the CECP/NEC volunteer doctors is ongoing since more than two and a half decades. Various indigenous methods for awareness have been developed, applied and seen success over the years. Old and new activities have been running in tandem; some older ones being completely replaced by newer more effective activities.
Paid Telecast of Epilepsy Awareness Documentary on National and Regional Satellite Television Channels
The latest project of CECP/NEC is the telecast of epilepsy awareness documentary on popular satellite television channels in national and regional languages. This documentary (educational & non commercial) has been produced to create awareness amongst the general public about epilepsy; the nature of the disorder, how it is caused, first aid and treatment. An attempt to dissuade misconceptions and reduce stigma associated with epilepsy has also been made. This documentary has been produced in Urdu, English, Sindhi, Pushto and Balochi.
The documentary has also been shown at ILAE booth during various ILAE international conferences.
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 times over a short period. ‘Paid telecast’ of this documentary is being done since then on major regional satellite channels. Each telecasts cycle is consist of twice daily telecast continuously for three months. Two telecasts cycles in each of the four provinces have been completed. To change the nation’s mindset sustained awareness is a must for which repeat telecasts are required. This five minutes documentary has been produced by NEC through a financial grant from M/S. Novartis (Pakistan) who have also sponsored the initial paid telecasts. Following paid telecasts is being possible through support of other individuals and organizations.
Epilepsy Awareness Using a Single Bulleted Message
Awareness using a single bulleted message; “Epilepsy is a medically treatable disorder. It is not caused by witchcraft, sorcery, djinns, evil eye or any other supernatural causes. Consult your doctor” has been done through:
Epilepsy awareness stickers: Prominent coloured stickers were printed with the above message in the national language. These stickers were pasted on a fleet of ambulances run by a well known welfare organization in the entire country. They were also pasted on local and intercity buses, cargo trucks and long-haulage lorries which carried this message countrywide, even to the remotest places.
Detailed Awareness Message
Print & Electronic media: Public awareness material for masses has been produced locally in the national and regional languages, keeping in mind public perceptions, cultural beliefs and treatment seeking behaviour and highlighting CECP’s objectives i.e. make understand the nature of the disorder, importance of drug compliance (regularity and punctuality) and effort to reduce stigma (perceived and enacted) through different media.
National and Private TV Channels: Documentaries and talk shows with numerous repeat telecasts have been done; free of cost as public service message by some TV channels including PTV. A 20 minutes documentary made by CECP through valuable donation of Mr. Imran Mir of M/S Circuit Advertising has been aired on various forums. Hum TV has also run our documentary gratis several times for which we thank Ms Sultana Siddiqui and Mr. Athar Waqar Azeem. Another 20 minutes documentary was produced by Indus Television and telecasted several times, for which CECP is grateful to Mr. Mujahid Barelvi and Mr. Ghazanfar Ali.
Cable Television: Perhaps the most popular medium amongst masses. Used maximally during 7-day Free Camp modality for sector/district awareness. Most cable-operators provide gratis service; a few levy token charges to air CECP produced documentary.
National and private Radio channels: Talks and interactive programs specially targeted to reach homes in far flung areas of the country.
Print Media: Articles printed in national & regional language newspapers and magazines. Despite overall low literacy rate in the country, this modem is valuable, as literates in the community tend to be the opinion leaders for the masses.
Indigenous awareness material: Production of indigenous awareness material like posters, booklets, brochures, handbill, audio-visual documentary, illustrated awareness posters and quarterly newsletter.
Detailed Awareness Message
School awareness workshops: As an effort to produce awareness at the grass-route level, school teachers and students of secondary schools and madrassahs (religious schools) were targeted through awareness workshops conducted by senior members of the CECP team. This modality included filling of pre-workshop knowledge, attitude, practice (KAP) pro forma by teachers. Viewing of a 20 minutes comprehensive awareness documentary specially produced for general public education, was followed by an interactive Q&A session. Specially prepared epilepsy awareness material was distributed amongst school teachers whilst a special awareness brochure presenting ‘epilepsy scenario in story-form’ and a souvenir pen (engraved with ‘bulleted’ message) was given to all participating students. Participants were requested to share the given information amongst household members, friends, neighbours & acquaintances. In 18 workshops 800 teachers and 1835 secondary school students have been addressed. This activity had to be discontinued due to time and human resource constraints with limited reach.
Epilepsy Awareness Posters: Large sized (18” x 30”), long-lasting (using thick, light & rain resistant card paper), coloured, eye-catching, illustrated educational posters were designed with help from a professional advertising company (gratis) and printed in national and regional languages.These were affixed in most registered schools and madrassahs (religious schools) in Pakistan; also at prominent public places like bus stands, post offices, railway stations, municipal corporation offices, markets, etc. Its illustrated text highlights nature of the disorder, seizure first-aid, importance of drug compliance, stigma and reduction morale-boosting attempted by enumerating names of famous people with epilepsy and contact address of nearest epilepsy-care facility. A total of 45130 posters were affixed country wide. This activity has been discontinued and replaced with more cost and time effective activities with wider geographical reach.
Epilepsy Day & Walk: Organized for further strengthening of epilepsy awareness campaign. An intensive campaign through various mass media was followed by a gathering of public opinion leaders, medical specialists, people with epilepsy and their families, school teachers, students and people from all walks of life. It is continually emphasized that epilepsy is treatable and the affected should not be stigmatized. Free epilepsy clinics, teachers training workshops, art competition and face-painting for school children, counseling of patients and their families, was done in a festive mood. Giveaways like caps, T-shirts, mugs, plates, pens and others with bulleted awareness message was distributed. Epilepsy awareness walks were also organized on the same lines. Extensive media coverage of these events further extended the epilepsy awareness boundaries. Due to prevailing law and order situation, this day is now celebrated in the confines of various institutions and awareness is targeted through electronic and print media.
CECP Management Campaign – FOR NEAR-HOME EPILEPSY CARE
Satellite Epilepsy Centres: Primarily run by middle-cadre neurologists/CECP certified PCPs, provide near-home epilepsy-care, facilitate epilepsy awareness in the locality and are prime location for free epilepsy camps.
Free Epilepsy Camps: Objectives to be achieved through a Free Camp included ensuring awareness in total population of the sector/ district, holding of Free Camp for management purposes and announcement of creation of a Satellite Centre as permanent care-giver in the area. Pre-camp, week long epilepsy awareness was done in the entire district population, utilizing all possible modes (loudspeaker-mounted vehicles, banners, graffiti, cable television, handbills, announcement from mosque loudspeakers, announcements at schools etc). A team of 6-8 senior neurologists from CECP Secretariat, Karachi travelled to the location to conduct the camp. An Epilepsy CME for the prominent district doctors would always follow. In the total 69 camps held in all major cities and towns of the country, 12741 patients were seen of which 7962, had epilepsy. This activity has been discontinued due some limitations like high costs, limited human resource availability, time consuming with limited reach and outcome. But the main reason for discontinuation is security issues in the country.