“Epilepsy and Employment” Position paper: interview with Prof. Oriano Mecarelli

We are pleased to present an interview with Prof. Oriano Mecarelli, President of the Italian League Against Epilepsy (LICE), Head of the Epilepsy Centre of the Department of Human Neuroscience at La Sapienza University and the Policlinico Umberto I in Rome, on the “Epilepsy and Occupation” Position Paper. The Position Paper represents the “ERE – Epileptologists telling epilepsies” project continuance, conducted by Fondazione ISTUD with the patronage of LICE and the unconditional support of BIAL, and is available on the project webpage.

Q. Professor Mecarelli, LICE, of which you are President, has sponsored and actively participated in the narrative research “ERE – Epileptologist telling epilepsies”, and has decided to promote also this ERE second initiative, dedicated to the issue of employment for people with epilepsy. Why is this topic important for the scientific community dealing with this condition?

OM. Epilepsy is still a chronic neurological pathology negatively impacting on people suffering from it, mostly because of the individual and social stigma that has always accompanied it. People who have epilepsy tend to isolate themselves first and foremost because seizures (which by definition catch the individual suddenly, unexpectedly and unpredictably) induce a sense of insecurity and reduce self-esteem. On the other hand, epilepsy is still very frightening at a social level and causes more concern than other chronic pathologies, with a negative historical-cultural heritage consolidated over the centuries. For these reasons – in addition to the objective limitations imposed by the more severe forms of epilepsy – the pathology significantly impedes occupational integration. In this way, further obstacles influence the treatment process, with comorbidities of various kinds and a global worsening of the condition. As a consequence, neurologists cannot fail to take note of these problems if they want to take care of the patient as a whole.

Q. Which other partners and referrals have been crucial to working table on epilepsy and occupation?

OM. For the first time in our country, neurologists, patients and some of their Associations, company doctors and representatives of the Institutions, have reflected on Epilepsy and Occupation. I believe that this kind of working table has represented a novelty, but it must be translated into a critical stimulus to continue along the same lines in the future. Neurologists do not have to perch in the comfort zone represented by their workplace, but in the times we are living in, they cannot but widen their horizon, to better understand the needs of the patient and the obstacles that often make the success of the treatment process more difficult.

Q. As concerns the Position Paper recently presented at the LICE Congress: an innovative participatory planning method was employed through integrating Narrative Medicine with the methodology of the Consensus meeting. What do you think about this modality, and what is the role of narrative?

OM. After having written narrative concerning the specific topic, meeting (virtually, given the emergency we are experiencing!) together with ISTUD and all the other actors involved within the project was necessary to produce the Position Paper, to give to the several opinions to reach a final consensus. I believe that this modality of intervention has enhanced the central role of narratives and that, despite the logistic difficulties, the interactivity that characterized the first phase of the ERE project has not been lost.

Q. Among the many elements emerged and systematized within the Position Paper, which do you think are relevant both for the improvement of the quality of life of people with epilepsy and for the inevitable repercussions on the treatment pathways?

OM. Being as a physician strongly involved in the treatment process (which includes both the diagnosis of illness and the implementation of the most appropriate therapy), I am particularly interested in actions to facilitate the entry into the working sphere of the person with epilepsy. I consider work placement to be a fundamental element in improving the patient’s self-esteem and in allowing a better awareness and acceptance of the pathology itself. However, the job placement must be accompanied by an honest and constructive dialogue involving the person with epilepsy, the epileptologist of reference and the company doctor. Work is a right for everyone, and for the person with epilepsy, it must be safe!

Q. The Position Paper is considered a first step to start talking about epilepsy and occupation in an integrated way; what next steps do you think are necessary to continue and not let this first choral effort fall?

OM. I believe the grounds have been set for a future dialogue (I insist: loyal and constructive) between people with epilepsy, their doctors and their corporate and institutional contacts. However, now we need to move from words to actions! First of all, patients must find the motivation to look for a job and talk to their neurologists about it better to understand the risks and benefits of a possible job. Then, it becomes essential to establish a relationship of trust with the employer and the company doctor, free from prejudices and erroneous considerations, often based on a poorly developed knowledge of the specific pathology. The issue must always be kept in mind, and the interest of all stakeholders must be stimulated with new initiatives that take patients’ needs first and foremost into account.

Paola Chesi

Degree in Natural Science at University of Turin, Italy. Project Manager and trainer at ISTUD – Health Care Area since 2010. Expert in health care organizational research and in the approach with Narrative Medicine, applied to national and international projects to analyse the organization and quality of pathways of care. Coordinator of training programmes ECM accredited (Continuous Medical Education system) addressed to health care professionals, as trainer and tutor. Coordinator of European projects, Lifelong Learning Programme funded, with a specific focus on storytelling. Collaboration with the Italian Society of Narrative Medicine and with international universities. Participation as speaker at several congresses promoted by scientific societies and Health Authorities.

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