EPIPICTO final multiplier event with President of Malta official watch party on FB page
Launch Epipicto pictorial guide
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)
Pictorial Guide is nearing completion
We are delighted to present some images from the Guide. these have been released in celebration of International Epilepsy Day on 14 February.
Intensive process
The process to select the images has been fun but intensive. The project management group and the graphic artist have been in close contact and we are pleased with the results. We have also incorporated feedback from the epilepsy congress in Vienna last year and from our own organisations. Many useful comments were given, which made us look at the images from the perspective of the user. We want to thank everyone who has helped us to develop the images.
Nearly there!
We have now reached an exciting milestone! The Pictorial Guide to Epilepsy is nearly ready. We will validate the draft Guide during a meeting with stakeholders in Cologne in March and the final adjustments will be made after this meeting. You will be able to download the completed Guide from this website from September 2019. Stay tuned!
Epipicto shortlisted for Best Poster Award
We are delighted to announce that the Epipicto poster was shortlisted for Best Poster Award! Unfortunately we did not win, but we were thrilled to have been selected out of the many, many poster submissions. This is a significant achievement for a project which at first glance might seem so simple, but in practice requires a great deal of commitment, analysis and input from a dedicated project group!
Check out the video from the 2:25-3:36 time stamp to see Janet Mifsud discussing the project in the video compilation.
The Epipicto poster was well-visited during the allotted poster session at the 13th Congress on Epileptology. The poster presentation was lively and interactive, with many people interested in the project. The poster can be downloaded here.
Epipicto @ 13th European Congress on Epileptology
The Epipicto project will be presented at both the English-language Social Care Forum as well as the German-language Patient Forum.
Both sessions will take place on 30 August 2018 during the 13th European Congress on Epileptology in Vienna.
Social Care Forum (English language)
08.30-09.00 uur
Social Care Forum: Facilitating self-management in epilepsy
Co-chairs: Janet Mifsud (Malta) & Caroline Morton (Netherlands)
Introduction to the forum – who we are and why this session? – Caroline Morton (Netherlands)
Epilepsy futures – Shirley Maxwell (United Kingdom)
EPIPICTO – why, how and feedback- Janet Mifsud (Malta) & Thomas Porschen (Germany) & Michael Alexa (Austria)
Patient Forum (German language)
09.30-13.00
More information about the German-language patient forum can be found here.
Press Release Epipicto (Maltese)
EPIPICTO: PROĠETT EWROPEW ĠDID LI IPOĠĠI L-EPILESSIJA FL-ISTAMPA
Bejn l-24 u l-25 ta’ Novembru 2017 saret laqgħa ta’ tnedija għal proġett ġdid bl-isem ta’ EPIPICTO. Dan huwa proġett Ewropew Erasmus+ li se jiżviluppa gwida bl-istampi għall-adulti bl-epilessija u li għandhom diffikultà fil-litteriżmu. Il-ħames organizzazzjonijiet li ġejjin minn pajjiżi differenti fosthom l-Awstrija, il-Ġermanja, l-Olanda, l-Iskozja, kif ukoll Malta, iltaqgħu ma’ individwi Maltin li jew huma affettwati mill-epilessija jew li jiltaqgħu ma’ nies bl-epilessija fuq ix-xogħol tagħhom. Dan sar sabiex jiġi diskuss x’inhuma l-aħjar elementi li għandhom jiġu inklużi fil-gwida.
L-epilessija hija waħda mill-aktar kundizzjonijiet newroloġiċi kroniċi komuni li taffettwa mal-1% tal-popolazzjoni dinjija. Kundizzjoni li sfortunatament iġġorr stigma kbira. Ir-rapport tal-litteriżmu tal-U.E. tal-2012 jindika li mal-20% tal-adulti Ewropej għandhom problemi ta’ litteriżmu. Numru kbir minn dawn in-nies jgħixu f’żoni rurali u għaldaqstant għandhom problema ta’ aċċess għall-edukazzjoni. Minħabba l-wasla ta’ numru ta’ emigranti fl-Ewropa, fejn iċ-ċans hu li l-anqas jafu jikkomunikaw bl-ilsien tal-pajjiż li jinsabu fih, huwa stmat li dan il-persentaġġ huwa ogħla minn hekk. Dan ifisser li jista’ jkun hemm impatt sinjifikanti fuq il-kwalità ta’ ħajja u ta’ saħħa ta’ dawn il-persuni. Huwa mifhum li fejn hemm l-illiteriżmu, in-nies ftit li xejn tkun taf kif titlob jew tfittex għall-għajnuna. Għaldaqstant dan jaf iżid aktar stigma marbuta mal-epilessija. EPIPICTO huwa l-proġett li qed jimmira lejn dil-ħtieġa immedjata.
L-għan ta’ din il-gwida huwa li jingħata tagħrif dwar tipi differenti ta’ epilessija , kif ukoll aktar għarfien u fatti dwar x’inhi u x’mhix din il-kundizzjoni. Hu maħsub li dil-gwida se tagħti daqqa t’id lill-adulti epilettiċi sabiex ikunu jafu aktar kif ifittxu l-għajnuna, biex b’hekk itejbu l-kundizzjoni ta’ saħħithom u jkollhom kwalità ta’ ħajja aħjar. Finalment, dan kollu, għandu jikkontribwixxi sabiex tkompli titnaqqas l-istigma, ibbażata fuq informazzjoni ħażina jew inkorretta.
Fondi provduti minn Erasmus+ għall-iżvilupp ta’ dil-gwida.
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Ritratt: Membri tal-kumitat tal-EPIPICTO u l-membri tal- Kumitat tal-Caritas Malta Epilepsy Association (CMEA).
Mix-xellug ghal-lemin: Noel Portelli, CMEA; Robin Pinkston, CMEA; Michael Alexa, Malta; Caroline Morton, Netherlands; Shirley Maxwell, Scotland; Thomas Porschen, Germany; Janet Mifsud, CMEA, Caroline Attard, CMEA.
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Kuntatt:
‘Għal aktar informazzjoni tista’ tibgħat imejl fuq: epipicto@gmail.com
Awstrija: Epilepsie Dachverband Österreich, Mr. Michael Alexa. Email: michi19691@yahoo.de
Ġermanja: Interessenvereinigung für Anfallskranke in Köln e.v., Mr. Thomas Porschen. Email: info@epilepsie-online.de
Malta: Caritas Malta Epilepsy Association, Prof. Janet Mifsud. Email: janetmifsud@gmail.com
Olanda:Stichting Epilepsie Instellingen Nederland (SEIN), Ms. Caroline Morton. Email: cmorton@sein.nl
Skozja: Epilepsy Connections, Ms. Shirley Maxwell. Email: smaxwell@epilepsyconnections.org.uk
New European Project puts Epilepsy in the Picture
New European project puts Epilepsy in the Picture
The kick-off meeting of the EPIPICTO project, a European Erasmus+ project to develop a pictorial guide for adults with epilepsy with reading difficulties, was held in Malta from 24-25 November 2017. The five partner organisations from Austria, Germany, Malta, the Netherlands and Scotland met with local people affected by epilepsy, and other stakeholders, to discuss what this guide should include and literally putting epilepsy in the picture!
Epilepsy is one of the most common chronic neurological conditions affecting 1% of the population worldwide, and is associated with a huge burden of stigma. The EU literacy report (2012) 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. In view of the recent influx of migrants into Europa, who might not speak the language of the country in which they settle, it is estimated that this percentage is higher and can have a significant impact on people’s quality of care and quality of life. Poor literacy skills lead to poor health-seeking behaviour and contributes to the enduring stigma of epilepsy. By putting epilepsy in the picture, this project aims to meet this unmet need.
The aim of the guide is to share information about what epilepsy is, and what it is not. The guide will allow for easy knowledge-transfer on facts about epilepsy. It is envisaged that this will also help adults with epilepsy to improve their health-seeking behaviour, contribute to an improved quality of life and in turn contribute towards a reduction of stigma based on misinformation and ignorance.
Funding has been provided by Erasmus+ for the development of this guide.
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Neues europäisches Projekt bringt Epilepsie in Bildern
Das Auftakttreffen des EPIPICTO-Projektes, ein europäisches Erasmus + -Projekt zur Entwicklung eines Bildleitfadens für Erwachsene mit Epilepsie mit Leseschwierigkeiten, fand vom 24. bis 25. November 2017 in Malta statt. Die fünf Partnerorganisationen aus Österreich, Deutschland, Malta, den Niederlande und Schottland trafen sich mit von Epilepsie Betroffenen und anderen Interessenvertretern, um zu besprechen, was dieser Leitfaden beinhalten sollte.
Epilepsie ist eine der häufigsten chronischen Erkrankungen in der Neurologie, die weltweit 1% der Bevölkerung betrifft und mit einer großen Belastung durch Stigmatisierung verbunden ist. Der EU-Alphabetisierungsbericht (2012) hat gezeigt, dass bis zu 20% der europäischen Erwachsenen über geringe Lese- und Schreibfähigkeiten verfügen und dass viele in ländlichen Gebieten lebende Menschen keinen oder nur geringen Zugang zu Bildung haben. Angesichts des jüngsten Zustroms von Migranten nach Europa, die möglicherweise nicht die Sprache des Landes sprechen, in dem sie sich niedergelassen haben, wird geschätzt, dass dieser Prozentsatz höher ist und erhebliche Auswirkungen auf die Qualität der Pflege und die Lebensqualität der Menschen haben kann. Schlechte Lese- und Schreibfähigkeiten führen zu schlechtem gesundheitsorientiertem Verhalten und tragen zu dem anhaltenden Stigma der Epilepsie bei. Dieses Projekt zielt darauf ab, diesen unerfüllten Bedarf zu decken und Hilfestellungen zu geben.
Ziel des Leitfadens ist es, Informationen darüber zu geben, was Epilepsie ist und was nicht. Der Leitfaden ermöglicht es einen einfachen Wissenstransfer von Fakten über Epilepsie zu bekommen. Es ist vorgesehen, dass dies auch Erwachsenen mit Epilepsie helfen wird, ihr gesundheitsorientiertes Verhalten zu verbessern, zu einer verbesserten Lebensqualität beizutragen und wiederum zu einer Verringerung von Stigmatisierung durch Fehlinformationen und Ignoranz beizutragen.
Die Finanzierung wurde von Erasmus + für die Entwicklung dieses Leitfadens bereitgestellt.
Kick-off Epipicto Project in Malta
The kick-off meeting of the Epipicto project was held in Malta from 24-25 November 2017. Representative from the partner organisations met with people affected by epilepsy living in Malta, and with other stakeholders, to discuss what this guide should include.