PARE0011 AFLAR’S (FRENCH LEAGUE AGAINST RHEUMATISM) NEW ACTIONS TO HELP PEOPLE WITH RHEUMATIC DISEASES TO GET AND STAY EMPLOYED.
Authors: L. Carton, L. Grange, F. Alliot Launois, G. Chales, B. Liesse, C. Jandard
Journal: Annals of the Rheumatic Diseases (2020)

Background: Accessing jobs and being able to stay in a paid work position are a personal issue for people with rheumatic diseases, as well as for society. AFLAR, French league against rheumatism, has been acting towards patients and employers since 2014 in this field. Objectives: After a preparatory work with a panel of all types of professionals and institutions working on the subject, key messages on means to improve the professional situation of people with rheumatic diseases have been published. These messages were used as a basis for an awareness training designed for human resources training and employers’ managers, and in a guidance booklet designed for patients and published in 2016: «At work, even if affected by chronic rheumatic diseases ». This booklet, rather than gathering administrative and social resources in favour of patients, was based on patients’ and experts’ expression, written with them and proposed gradual guidance along their path from their professional choices to the disabled worker certification when needed. Two new actions have been seen as necessary in 2019 in order to go on with our actions: updating our booklet after 2 new laws had been issued in the field of labour law, and additions seemed necessary because of new work methods are developing (distant work from home, independent work); and the need of a new widely spreadable tool to accompany patients from the diagnosis stage, especially on the diagnosis disclosure to the work group issue. The specific characteristics of rheumatic diseases: diversity, growing invisibility of diseases’ effects and aftereffects to new treatments such as biologics and early rehabilitation, variation in time and personal impact, make them hard to understand by employers and even untrained social workers. This is what we noted from our experience in patient education workshops. Patients have a tendency to hide their pathology, and thus cannot benefit from social advantages as disabled workers, with motivation based on keeping personal image and an idea of normality, and fear of negative reactions from the work group, such as depreciation, pity, idea of negative impact on team’s productivity). Patients have to build a real strategy, taking into account these criteria and their personal choices, while preparing their job’s adaptation or social requests when needed. AFLAR chose to create a new patient information tool: free short widely spreadable videos, available on line. These will also invite patients to get in touch with expert patients on the specialized hotline, participate to chats of patient education workshops. Methods: Videos will show witness patients and experts, who will be asked about their experience and advice based on four questions: - Should we speak about our disease (and when, how?), or not speak about our disease at work? - What means « disablement », « being disabled » for you as a person affected by a rheumatic disease? - What have you been able to do to get a paid position, or keep your job, that you could quote as an advice for other people in the same situation? - If you had been given, or were given now a magic wand to make it easier to get or keep a job, or get/keep the job you dreamed of, what would you change? At the end, videos will deliver further advice, tools and resources taken from the booklet, such as a model of decisional scale, or reference institutional website addresses. Results: AFLAR wishes to contribute actively to rheumatic patients’, and especially young people’s information on the topic thanks to these more innovative and interactive tools. Conclusion: Furthermore, wishes, solutions and ideas of witness patients and users will be gathered for advocacy towards employers, institutions and decision makers. Disclosure of Interests: None declared