The Caritas Malta Epilepsy Association in conjunction with four other European epilepsy organisations (Epilepsie Dachverband Österreich (EDO) Austria; Epilepsy Connections (Scotland); Interessenvereinigung für Anfallskranke in Köln e.V (Germany); and Stichting Epilepsie Instellingen Nederland (SEIN)(Netherlands) launched a pictorial guide for adults in epilepsy, funded by the EU Erasmus+ programme. This launch was held at San Anton Palace, Attard on 14 September 2019, under the auspices of HE The President of Malta, Dr George Vella and in the presence of Hon Dr Michael Falzon, Minister for the Family, Children’s Rights and Social Solidarity and Mgr Fr Charles Cordina, Caritas Malta.
Epilepsy is one of the most common chronic neurological disorders affecting around 1% of the population worldwide. The aim of EPIPICTO is to develop a pictorial guide for persons with epilepsy in marginalised communities, who might have difficulty communicating their ideas due to language or other barriers, are at the risk of social exclusion such as migrant persons, persons living in isolated areas in Europe and persons with low literacy levels and low health literacy. This final event was held to disseminate the final guide in order that it may be used among various endusers, such as other NGOs, respite care workers, social workers and health care professionals who were also invited to the launch.
In his opening address President Vella thanked CMEA for taking on this very important iniative. He highlighted the importance of each person, whatever the medical or social condition and the important of education in reducing stigma.
The Minister for the Family, Children’s Rights and Social Solidarity, Michael Falzon, argued that we cannot deny the stigma related with epilepsy, especially within marginalised communities such as migrants. As policy makers we need to look to the future and consider the cost of ‘getting it wrong’, while ensuring that we continue to support people with epilepsy from early stages
Mgr Charles Cordina provided an overview of the services Caritas Malta provides and explained how Caritas motto is “to be on the side of the people in need”. The project was thought for the inclusion in the community of persons on the margin of society, socially excluded.
Mr Frank Portelli, CMEA President and Prof Janet Mifsud, CMEA Advisor explained that the EU literacy report showed that up to 20% of European adults have poor literacy skills, and from experience many people living in rural areas have little or no access to education. Poor literacy skills lead to poor health-seeking behaviour and contributes to the enduring stigma of epilepsy. The initial aim of the pictorial guide is to ensure that adults with epilepsy living in Europe who have a poor literacy standard, or those immigrants who find the foreign language barrier an issue in learning about epilepsy or helping others to understand the disease, will have access to tailored information. The project will contribute to the social inclusion of these persons by using a pictorial guide to overcome language barriers and literacy issues. This will improve their access to social, health, education and employment services and help them to better manage their epilepsy. All this will result in a better quality of life for these persons.
The format of the guide will be readily adaptable to be rolled out in other regions of the world, where illiteracy rates are considerably higher than in Europe. The guide will be free to use, and freely available to download on this EPIPICTO website. It will ensure better communication between persons with epilepsy and the various professionals they may come in contact with. The target participants of this final event are persons who work with people with epilepsy, persons with epilepsy themselves, and carers/relatives of persons with epilepsy.
It is so far available in 11 languages: English, Maltese, Dutch, German, Russian, Spanish, Italian, French, Chinese, and Arabic and Mandarin. A limited number of hardcopies will also be made available.
EPIPICTO brings together five European epilepsy organisations from Austria, Germany, Malta, the Netherlands and Scotland:
• Caritas Malta Epilepsy Association
• Epilepsie Dachverband Österreich (EDO)
• Epilepsy Connections (Scotland)
• Interessenvereinigung für Anfallskranke in Köln e.V.
• Stichting Epilepsie Instellingen Nederland (SEIN)