Since the first phase of the “ERE – Epileptologists telling Epilepsies” narrative research, carried out between 2017 and 2019, the topic of employment for people with epilepsy had emerged as a critical issue to be urgently addressed, for the improvement of the quality of life of entire families living with this condition. The results from the analysis of the 91 epileptologists’ narratives had been shared during a Consensus Meeting held in 2019 with some of the professionals who participated in the project. This initiative ended with the request to start a working table to integrate social, institutional, medical-legal and entrepreneurial aspects to the clinical part. The working sphere is connected to the course of treatment: it can interfere with the therapeutic choices of the person with epilepsy and poses ethical questions to the caregivers in providing guidance and advice to the many families who ask for help and answers.
It seemed a utopic request. Yet the Healthcare Area of the ISTUD Foundation, the commitment and sponsorship of the Italian League Against Epilepsy (LICE) and the unconditional support of BIAL have made possible the realization of this table, with an unstoppable motivation even in front of the pandemic.
In spring 2020, during a healthcare emergency, meetings and long-distance activities were organized, bringing together for the first time, around a virtual table, the clinical epileptologists with the referents of the world of associations including the Italian Epilepsy Federation (FIE), experts in labour law, representatives of the Ministry of Health, representatives of labour agencies, including Manpower, under the external supervision of the National Association of Company Doctors (ANMA).
The aim was writing and sharing a Position Paper for sharing guidelines and good practices of integration, maintenance and support at work for people with epilepsy and their families. The needs were multiple, but the intentions were mainly two:
- to start talking about the topic of employment with epilepsy, still very silent and subject to a strong stigma from employers, human resources people, sometimes even colleagues;
- start a path to standardise the guidelines and act good practices to accompany people with epilepsy to enter and integrate into the world of work, keep it in the best possible conditions, and also support caregivers, often parents of children and young people with severe epilepsy, but not only.
Three specific macro-themes were addressed, starting from a systematic collection of real cases:
- The orientation and inclusion in the working sphere of young people with epilepsy
- The maintenance or readjustment of work for adults with epilepsy
- Work support for family members and caregivers of people with severe epilepsy.
Many concrete actions and individuals were identified to address these issues in an integrated, multidisciplinary and effective way, available in the document accessible at https://www.medicinanarrativa.eu/wp-content/uploads/Position-Paper-Epilessia-e-Occupazione.pdf (in Italian).
Among the key figures and relationships, the one between the epileptologist and the competent physician, for a shared and objective evaluation of the state of health and suitability to work of the person with epilepsy. In the multidisciplinary care network, the psychologist and the home nurse expert in epilepsy, a figure present abroad but not yet structured in Italy, can concretely support families. Among the referents in the working sphere, employment agencies play a role in ferrying, preparing and directing people with epilepsy towards the most suitable and satisfying occupations. For employers, the task but also the opportunity to use the available company welfare measures, such as accommodation solutions, remote working or smart working – which have proved to be critical solutions for all workers in these pandemic months – and other forms of flexible working, to put the person in the best possible condition to work with satisfaction and, consequently, efficiency. Finally, institutions can intervene in this network to support and facilitate, for example, the management of epileptic seizures or therapies in schools, train teachers and the whole society to learn about epilepsy.
At the base of all the critical elements addressed and shared there is the stigma against a condition still little known in its actual characteristics and often exaggerated by a “legendary and mysterious” vision, from which, in doubt, escape.
The employment of people with epilepsy is a complex issue due to the diversity of factors that contribute – from the clinical condition to the family and social context of reference, to the type of business and the related occupational risk. Also, the stakeholders called to intervene to improve the employability of people with epilepsy are different and act on multiple levels, clinical, social, legal, institutional. Therefore, there is no univocal solution that can be applied to all epilepsy situations, and undoubtedly a working table of a few months is not enough to immediately change the current scenario. Nevertheless, a first critical step has been taken to bring the issue to the attention of the scientific community and the social, institutional and legal interlocutors, and to create a virtuous and integrated network between entities that today seem to act more individually than chorally.
The next step could be standardizing the interventions according to shared guidelines and references both for the epileptologist and for the competent doctor and Invalidity Commissions members (to name two referents involved in this working table). Aligning and sharing intervention practices would help people with epilepsy to make more thoughtful and informed decisions about whether to declare their condition in a job interview, or in the context in which they are already working. It would help caregivers to answer to doubts (which sometimes become real dilemmas) about their role and support provided to patients, which cannot be limited to the clinical aspect because there is inevitable reciprocity between the impact of treatment on the quality of life of those living with epilepsy, and the impact of life events on the treatment pathways.
Calling into question “welfare” may seem conceptual and generalist, but through breaking down this term in the reference actors and actions, it evolves in structuring targeted, integrated and effective lines of intervention.
Finally, a special thank goes to all those who have actively and enthusiastically supported this initiative, in a challenging and uncertain period: the LICE, represented by President Prof. Mecarelli, the 11 clinical epileptologists, the FIE and the Fuori dall’Ombra – Insieme per l’epilessia (Out of the Shadow – Together for Epilepsy) Association, the Ministry of Health – General Directorate of Health Prevention, the labour lawyer Luca Barbieri, the employment agencies Manpower and AFOLMET, and the company BIAL for the unconditioned support. With the hope that this tireless work will be fruitfully integrated with all efforts already made and will lead to a more choral step.