Dans les Centres référents, la prise en charge du malade SLA par les bénévoles de santé (BS) s’inscrit dans le cadre d’un véritable partenariat avec l’équipe pluridisciplinaire regroupant les acteurs de la prise en charge médicale, paramédicale et sociale. Après avoir défini la fonction proprement dite du bénévole de santé et rappelé le principe de son recrutement après formation et cooptation par le médecin responsable, on trouvera largement décrits son positionnement et son rôle auprès des patients SLA et de leur famille, soit lors des consultations au Centre, soit au domicile du malade. En outre est présentée la méthodologie du déroulement de la prise en charge, puis de son suivi à long terme construit autour de rubriques ciblées cernant la mission effective du bénévole de santé auprès du patient et de son entourage. Il ressort de cette analyse que le bénévole de santé par son action dans l’organisation des Centres référents ajoute à l’acte médical, une démarche sociétale susceptible de permettre au malade SLA de récupérer un sentiment d’appartenance au corps social, initialement compromis par son handicap et sa maladie.

In ALS Centers, the patient receives coordinated care from Health Volunteers and the medical team including specialized physicians, therapists and social workers. There are two types of volunteers: those who assist the patient in hospital, the Medical Volunteers (MV), and those who make home visits, the Home Volunteers (HV). Both are recruited and trained by the ARS and have a single motivation: help the patient’s; they are emotionally and morally fully qualified to accomplish their task in accordance with the rules that have been set by the Association.

The ALS patient is seen for the first time by the Medical Volunteer at the ALS Center, immediately after his or her disease has been diagnosed by the clinic’s director. The MV takes the initiative for the dialogue, which he/she leads gently and tactfully. The discussion is aimed at gathering useful information to be put in the document: “Connaissance du malade” (knowledge of the patient), working out the patient’s primary concerns and assessing the carer’s commitment, in a friendly atmosphere. Finally the volunteer gives the guidebook, “Livret d’accueil” to the patient.

After the conversation, the MV decides which confidential pieces of information are to be passed on to the medical staff with a view to sorting out problems; information is then set the HV who will provide follow up care for this patient.

Long-term care management of ALS patients is achieved through three regular monthly appointments at the ALS Center. With the help of the document “Connaissance du malade” the MV keeps better in touch with the patient using the feedback from the HV about what has been going on in the interval between the two visits to the ALS Center. This collaboration enables appropriate follow up care for the patients with clearly-defined objectives: dealing with the patient’s anxiety, understanding his/her position at the present time, his/her daily routine and needs, comforting, checking compliance with treatment, counselling and supporting the family, answering delicate questions.

Thus, the Health Volunteer’s mission contributes meaningfully to medical treatment. This approach likely helps the person affected by ALS to regain the initially deteriorated sense of belonging to the social body.