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Epilepsy and the workplace: improving understanding and creating opportunities

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    What have Aristotle, Ludwig von Beethoven, Vincent van Gogh and Napoleon Bonaparte got in common? Not only were they all outstanding personalities, they also achieved great things while living with epilepsy – without the benefit of today’s medical treatments.

    A lot of water has gone under the bridge since then, but epilepsy is still a stigmatised disease that often raises doubts as to an individual’s capabilities. This can be especially true where the workplace and employment are concerned. That’s something we wanted to change at UCB in Germany and we also wished to assuage other employers’ concerns about dealing with people living with epilepsy.

    Concrete solutions
    The watershed moment came from an exchange with a UCB patient ambassador who candidly told us the things she and others are concerned about: concrete problems surrounding the issues of job-hunting, finding employment, and talking to one’s employer about epilepsy.

    As HR staff at UCB in Germany, we are directly concerned with these issues and clearly recognised that increasing levels of knowledge and awareness was an absolutely crucial factor.

    For this purpose, we researched what information was currently available. What struck us in the process was that most documents are primarily focused on obstacles and difficulties – in other words, they highlight problems that might potentially arise. What was lacking was a concrete way of showing what employers can do to employ people with epilepsy.

    Hence, we came up with the idea of providing such information ourselves, in the form of a presentation showing epilepsy in a neutral light and simultaneously making it understandable to non-medical target groups. We wanted to explain what epilepsy really means and how little impact the disease actually has on the workplace – instead of focusing on all manner of things that have to be taken into account.

    A positive light
    In April 2017, key figures from several pharmaceutical companies came together at a meeting of HR directors hosted by UCB in Germany. We presented the topic in this forum for the first time so as to raise a new awareness of the disease and alleviate the uncertainties surrounding the topic of epilepsy and the workplace.

    We wanted to provide information about epilepsy in a way that assuages possible prejudices and hence increases the chances of success for applicants with epilepsy. It was especially important for us to also get feedback from the other participants since our presentation was still in the development phase and directed towards non-medical target groups and employers.

    What’s next?
    Until now, people with epilepsy patients have often found entry into the working world very arduous, not only from a bureaucratic standpoint but also due to the great amount of information and clarification that potential employers may require during a job interview.

    The presentation may be a very good instrument for avoiding such problems in future. Not just for people with epilepsy , but for companies too. For instance, we have already integrated information into our presentation on what to do if a colleague has an epileptic seizure.

    We are currently considering the idea of including other elements: such as looking into the possibilities of staging an applicant coaching course via our UCB HR department. With an eye on the future, we hope to not only provide further information and clarification for HR professionals but to also give applicants the necessary boost in self-confidence they may need when applying to a potential employer.

    We also feel it is important not to place any restrictions on the use of the presentation, but to make it available to other companies for their use and further development. Our shared goal throughout must be to help more people with epilepsy get into gainful employment.

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Posted by Beth Ruark, 07 February 2018 Fabulous! As an epilepsy advocate, I believe that educating everyone about epilepsy is the best way to gain greater understanding. Targeting workplace HR departments is a real first step in bridging the gap between understanding and assumptions. Universities, government agencies, and even elementary schools all need better information to educate about epilepsy and hear a positive message that the condition is not the person.People cannot be defined by their condition, but by what they can achieve. Through greater struggles and even harder determination, the success that everyone with epilepsy achieves is richly deserved. Thanks for all that you do on behalf of those with those struggles!
Beth Ruark
Chicago IL USA