A survey conducted by the French League against Multiple Sclerosis (LFSEP) reveals that three quarters of people suffering from multiple sclerosis (MS) consider that their disease has a significant impact on their professional activity.
MS: disabling symptoms at work
MS, chronic disease and leading cause of disability among young people, affects 90,000 people in France. This chronic and progressive disease, which usually begins between the ages of 20 and 40, causes many disabling symptoms (visual, motor, sensory, urinary, cognitive …), especially at work.
The World Multiple Sclerosis Day, on May 27, was the occasion for the French League against MS to conduct a survey of 1,010 people with the disease in order to better understand their employment situation.
The volunteers responded to an Internet questionnaire from April 23 to May 18, 2015 on their working conditions, their relationships with their colleagues and the support they receive.
92% of MS patients are employed after diagnosis
Results: 92% of respondents worked after the diagnosis was announced. However, less than one in two patients (48%) speak of their multiple sclerosis at work, before being pushed to it by the appearance of the first symptoms, 5 years after the diagnostic, on average.
Disclosure of the disease in the workplace can indeed be difficult for people with multiple sclerosis because the pathology is relatively unknown to the general public. A non-negligible proportion of patients thus choose never to announce it. 18% do not tell the human resources manager, 12% to their hierarchical superior, 11% to their colleagues and 9% to the occupational physician.
However, other people decided to tackle the subject: 37% spoke to their supervisor, 36% to their colleagues, 35% to the occupational physician and 23% to the human resources manager.
1 in 5 patients benefit from a workstation arrangement
In the workplace, workstation layout is frequent but not systematic. One in five patients (19%) do not benefit from specific adjustments despite embarrassing symptoms and even though their superiors are aware of their illness.
These adjustments are however necessary because of the fatigue induced by the disease, motor disorders, pain and cognitive disorders.
Adapted working conditions for 79% of patients
79% of people with MS see their working conditions adapted to the disease. 45% work part-time, 33% benefit from an adjustment of their schedules, 25% of a reduction in their trips, 25% of an adjustment of their workstation, 7% of a transport assistance towards the workplace and 6% of a share of teleworking.
The tools to keep the sick in the job are not enough
Many structures allow patients to access and stay in employment (Departmental Center for the Disabled, Human Resources Department, etc.). 72% of people with MS use at least one of them.
As for the assistance devices, 75% of MS patients have used at least one of them. For disabled workers, their usefulness is greater than the structures mentioned above: 56% of them have had access to them and find them very useful.
However, these supports are not enough: one in 10 patients declares that they no longer work when they still feel capable of doing so. The cessation of professional activity is generally made 9 years after the diagnosis. This survey highlights the need to publicize MS to the general public, to provide better support to those affected in their employment and to better inform them about the tools available to them.
Source:
– OpinionWay survey – French League against Multiple Sclerosis
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