A cross-cutting coordination function
AFM-Téléthon regional services employ 160 facilitators, whose role combines both medical and social aspects. Their mission:
- Inform patients and their families about neuromuscular disease and its daily consequences.
- Act as interface between the family and the many specialists involved in treating these pathologies: physicians, physiotherapists, occupational therapists, social sector professionals.
- Ensure that these professionals are aware of the specifics of neuromuscular diseases.
- Identify the family's needs and, if they so wish, help them to find solutions such as how to exercise their rights, modify the home, obtain access to human aid and facilitate the introduction of a disabled child into school.
Supporting but not replacing
A job which is all the more necessary because neuromuscular diseases grow. At each stage (loss of the ability to walk, etc.), treatment has to be adapted as well as aid and the patient environment, to enable the patient to maintain as much independence as possible so that activities can continue. The final role of the facilitator is to help someone plan and carry out a life project in spite of the disease. And therefore not to make decisions for the patient. As summarised by Rémy, suffering from spinal muscular atrophy: "The facilitator makes suggestions but leaves the choice up to you: you are still in charge of your life, which is very important."
A need common to many diseases
"We were the first to identify the specificity of this support, notes Etienne Dubron from AFM-Téléthon. But since then, several associations have created similar jobs for other diseases or complex handicaps (AIDS, trisomy 21 (Down's syndrome), etc.) and the Alzheimer plan includes the creation of a thousand coordinators who have a similar profile. We pooled our forces to have this profession recognised and subject to specific training. In May 2010 with Sidaction, the Association des Paralysés de France, Trisomy 21, France Alzheimer and Prisma France (a project on the independence of elderly people), we validated a joint baseline document on the skills necessary for these professionals. It will enable us to negotiate the creation of a training course and university diploma."