Al Assi, Nahida

Sawan, Manar

English

Revues Scientifiques Marocaines

North African and Middle East Epilepsy  Journal Volume1 • Number 6 • November • December • 20125The Association for Care of Epileptic People in Lebanon (ECAL) is an association that was established in 2001, it is run by a dynamic team, including patients, family members, professionals (Figure 1). Figure 1: Logo of ECAL (Association for Care of Epileptic People in Lebanon).ECAL was acknowledged by the Ministry of Interior and Mu-nicipalities on 20 November 2000 and since then, its center was located in Sidon, the capital of South Lebanon (Figure 2a and 2b).Figure 2a: Map of Lebanon and its situation in Asia.  2b: Map of Lebanon and situation of Sidon.At its onset, ECAL’s purposes were to follow up with the concerned government authorities to: 1. Fund a well-equipped rehabilitation and education center to provide epileptic people with these two main services as well as supported medication.2. Support and help epileptic people and defend their rights.3. Educate and enlighten citizens about the symptoms of epilepsy through seminars and conferences.4. Do field research to get statistical figures about the rate and distribution of epileptic people in Lebanon, and keep up The Association for Care of Epileptic People in Lebanon (ECAL)Side by side with epileptic patientsL’Association pour les soins des personnes épileptiques au Liban (ECAL)Côte à côte avec les patients épileptiquesNahida Al Assi, Manar SawanECAL’s executive committee, Beyrout (Lebanon)Email: nahida.assi@gmail.comNo disclosure to be declaredwith the latest research findings and treatments.5. Participate in local, regional, and international confer-ences and seminars that are directly related to the above mentioned articles, pursuant to the laws and regulation in effect, and after the approval of the relevant authorities. Though formally acknowledged by the Ministry of Interior and Municipalities, ECAL was not listed as one of the bene-ficiaries of the annual budget of the Ministry of Social Af-fairs. As a result, ECAL team had to take action at a time when epileptic people were stigmatized and most of whom kicked out of schools when their conditions were declared. For this specific reason: 1. The ECAL team  volunteered to provide all the needed support, 2. They started a campaign to collect donations so they would support epileptic people medically and make sure that with the needed support those people would use their medicaments without interruption and thus avoid possible risks,3. ECAL president signed an agreement with a pharmacy so the latter would sell epilepsy medicaments at a reduced prices to epileptic people that ECAL transfers to them and, 4. ECAL started field work; using a survey questionnaire, ECAL team chose the old city of Sidon, where a lot of poor people lived, as the first place to start field visits, and it worked.Obviously, poor people that needed the support did not mind reporting the real situation about their epileptic fa-mily member(s). Those first responders:1. Were the first visitors of the center; they came when they needed medicaments,2. They reported epileptic cases they knew, thus helped ECAL start the snowball sampling and scheduling of visits. Having known the size of the problem, ECAL had to work along three parallel lines: follow the set schedule of visits to families of epileptic people to tell them about the ser-vices ECAL would offer them; follow another schedule of visits to well known business people in the area to start col-lecting donations, and start an awareness campaign to rai-se people’s awareness about epilepsy to reduce the stigma against epileptic people. Based on the donations collected at the beginning, ECAL took the first decision: supporting poor epileptic people by paying 30% of the price of the needed medicament no mat-ter what it was or how much it cost. Only in rare cases did North African and Middle East Epilepsy  Journal Volume1 • Number 6 • November • December • 20126ECAL offer a higher percentage of support, and that was based on assessing epileptic people’s socio-economic sta-tuses. Doing this, ECAL could gain credibility and started receiving more epileptic people. Unfortunately, of the total amount of the collected donations, ECAL could support all incoming people till September of every year for three years in a row. Though ECAL was moving at a slow pace, the steps were steady and fruitful compared to the embryonic expe-rience of the association.  And for this, ECAL did not insist on contacting families that could afford medication expen-ses of their children especially that those parents were in denial and did not want the ECAL team to discuss the issue with them. They even deprived their epileptic children of the normal social life.After all, to be able to support epileptic people all year round, ECAL had to come up with projects that are income generating and at the same time do not cost the Associa-tion much money nor do they lead to reduced support for epileptic people.Project 1: Making and Selling AccessoriesIn the absence of financial resources other than donations, ECAL team studied the market needs and found accesso-ries a good project for which ECAL would use some of its money for a good turnover without losses. And since the president is talented, she started making designs that would compete with what was in the market.  The presi-dent announced that epileptic people were invited to ECAL center to receive training and work side by side with ECAL team, those who could devote some of their time to the As-sociation, to produce accessories. She also announced that she would train parents of epileptic people on how to do the work, and thus make it easier for them to accompany their children and be paid for the work they did. Of course, this project has been running ever since the Association was established. However, selling accessories has always been a seasonal activity. The produce of this project and all the projects that followed has been displayed in two fixed places all year round. The first place is ECAL center and the second is Khan Al Efranj, a touristic site that is located in the old city of Sidon, the ca-pital of South Lebanon, where a number of other Associa-tions each has a designated area for its exposition. ECAL’s produce has also been sold in schools in two main seaso-nal occasions: Christmas and Mother’s Day. Sadly enough, when the economic situation is deteriorating, the amount of selling deteriorates, and this year, 2013, some schools apologized for not being able to welcome the event. And since the projects that might work are seasonal, ECAL had to come up with all the other possible projects.Project 2: The Loom ProjectECAL had on mind a project that aimed at training epileptic patients to do some manual work that would lead to their financial independence in the future. Based on field visits and some small scale research, and since there was a do-nor who offered ECAL two looms and an amount of threads, ECAL started the loom project.  The project was effective in the sense that those patients succeeded to a great extent in making good produce and thus gained some income. As a result, ECAL could accommodate a bigger number of pa-tients. Though ECAL had to pay for the training, ECAL was aware that some trainees were potentially future trainers for new visitors to use the looms and be able to manually knit carpets and similar produce.In fact, ECAL team along with epileptic people succeeded in making good produce and motivating parents to parti-cipate, the thing that led to their interest in promoting this project. Two problems led to stopping the loom project. The first was the cost of thread. When the cost of the needed amounts of thread was not covered from donors, ECAL could not assign big budgets and wait for the produce to be sold to liquidate the cost. The second problem was that not all people were interested in paying for quality work, nor would big expos collaborate and promote some of the produce. However, from this experience, the Association could hit more than one target: getting to know how big the problem is when people are ignorant about epilepsy (1), the level of social awareness about epilepsy and the impact of the stigma on epileptic people (2), and consequently the amount of work needed to address the issue at a bigger scale (3); that is, across the whole country. With the growing number of epileptic people visiting the center, ECAL could spread the notion that reporting a case was not contingent upon the need for medicaments at reduced prices; rather, an act for a bigger and more important cause. As mentioned earlier, this Loom Project was expected to upgrade the work and increase ECAL’s income to be able to sustain epileptic people’s medical support. Though the set objectives were not attained, it was after this project that ECAL team thought of making the Association more transparent to the wider community by designing a web-site through which the Association’s produce would be dis-played. Updating the website in a routine manner, ECAL promoted people’s knowledge background and opened the door for new donors to provide more support to epileptic people. In addition, documenting the project, ECAL paved the way for other interested associations to replicate the project in the future. To this end, ECAL recommended that if another Association would adopt the idea, they should learn from ECAL’s experience and thus take into account the fact that :a. Good quality produce requires training and this should not be at the expense of the Association’s main goals.b. If the process is to be sustained, the Association should guarantee that the cost of material resources be paid from donors,c. The loom project is a good project for epileptic people to be trained to perform in a risk free environment and to earn money from,d. Pricing the produce is an issue of concern and is to be studied carefully,e. Knowing where to promote the produce would help speed up the selling and thus turnover, As mentioned earlier, income generating projects were a necessity. With this on mind, ECAL formed a team of all the talented people, including ECAL’s president along with North African and Middle East Epilepsy  Journal Volume1 • Number 6 • November • December • 20127pended highly (1) on the seasonal activities being held and (2) on the market demand. With these projects sustained, ECAL could support a big number of epileptic people. Of the total number of epileptic people the association has researched, 500 receive support in the form of medical check-ups, lab tests, provision of medicaments OR health and social support services ONLY when needed, yet they receive 30% discount on medica-ments that they buy from pharmacies that ECAL transfers them to. Only 21 epileptic people receive free monthly me-dical check-ups, medicaments and lab tests that amount to USD 1350 monthly which is equivalent to 16000 annually. On the other hand, ECAL also provides some patients’ fami-lies with substantial support, yet the support is sustained or halted on the basis of the association’s budget and on setting priorities based on new research findings. The ECAL team is satisfied with the above figures. More importantly, ECAL is content about: - Having 12 trained mothers of epileptic patients working with ECAL to increase the produce of the different hand-craft items, - Having 30 active volunteer members and only four staff members; that is, little expenses,- Having more visitors to ECAL center to buy not only hand-crafts but also chocolate,- Starting the Epilepsy group project in schools and col-leges,- Fixing a schedule for annual events.To do more, ECAL team has been considering a number of research topics, considering the possibility to launch epi-lepsy campaigns, and reaching epileptic people outside the proximal zone of its center.Obviously, ECAL has not and cannot attain all of its set goals, namely establish a well-equipped rehabilitation and education center, unless it is listed as one of the beneficia-ries from the Ministry of Social Affairs or without sponsors that find in Epilepsy a really good cause. Interestingly, there was once a possible donor who wanted to buy a piece of land with a building erected, but then changed his mind be-cause of the risky situation in Lebanon. Though ECAL is determined and dedicated to a good cause, it is no until the situation settles that ECAL will be able to set a short-term strategic plan. Meanwhile, the Association is content about the accompplishments:1. Supporting the visiting epileptic people to make sure that they:  a. Use the required medicaments, b. Acquire skills that would enable them to be financially independent,2. Increasing the number of epileptic patients who will join the workshop,3. Editing and developing the existing survey questionnaire and reactivating field research with the help of volunteers, 4. Setting scheduled seminars aimed at spreading knowled-ge about epilepsy to a wider range of social groups,5. Participating in national, regional and international confe-some ECAL active members and epileptic people’s parents. The team set a list of projects that would be run all year round and agreed on who will belong in each task force. The growing team started the following concurrent projects. pCarving on copper, pCocoon patchwork,pCanvas and embroidering (Figure 3),pCarving on soap,pDrawing on glass potterypPreserving seasonal vegetables and fruitspPainting on carpets and cushions,pThe Chocolate project, and pMaking baskets from straw, filling them with chocolate and wrapping them for sale (Figure 4).Figure 3: Making Canvas by epileptic patients’ members of ECAL. Figure 4: Making baskets from straw by epileptic patients’ members of ECAL.ECAL started implementing the projects one at a time in the sequence shown above (Also see the attached figures). To succeed, ECAL followed the same steps in each pro-ject: training the interested group, the thing that was paid most of the times, assigning a task force and paying them for their produce, setting deadlines for submitting produce and collecting it, and displaying the produce in the center AND Khan Al Efranj. Along with this, the amount of sale, accounting and customers’ feedback were documented and consequently recommendations written as to the timing and amount of production of each item.  Of course, this de-rences to be updated about the latest research findings and new directions,6. Contacting more NGOs, business and social entities that are interested in supporting the project,7. Participating in workshops where all civil community as-sociations participate to set annual plans for new events.The Association’s long term objectives have been expanpded to include:- Improving the quality of life of epileptic patients by esta-blishing:• an infirmary specialized for epileptic patients and would provide their medical needs,• an academy specialized in implementing a special curri-culum for epileptic patients’ academic progress,• a technical and vocational center (TVE) for epileptic pa-tients,• a language center, the income of which will be utilized to support epileptic people.- Fostering a culture of public health practice,- Finding more solutions to make epileptic people more se-cure in jobs that are less risky and require minimal physical effort,-Mainstreaming epileptic people with other people in a small scale career domain.ECAL will always abide by the basic rights and legal prinpciples that were inspired by the Regional Declarations on Epilepsy, and thus will be working so epileptic people are entitled to: 1. Assessment, access to treatment, and health and social care,2. Welfare benefits,3. Be ensured that people with epilepsy and their families are fully informed about the condition,4. Involvement in the decisions affecting care and treat-ment,5. Be ensured quality and standard of care,6. Privacy and dignity,7. Least restrictive legal constraints,8. Reintegration/inclusion into the community,9. Rehabilitation,10. Enjoy all freedoms and privileges afforded to other ci-tizens,11. Protection against discrimination in law or otherwise or abuse in any form because of the condition. North African and Middle East Epilepsy  Journal Volume1 • Number 6 • November • December • 20128

L’Association pour les soins des personnes épileptiques au Liban (ECAL) Côte à côte avec les patients épileptiques

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L’Association pour les soins des personnes épileptiques au Liban (ECAL) Côte à côte avec les patients épileptiques

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