In France, 120,000 patients suffer from multiple sclerosis (MS). This May 30, the world day against this disease of the central nervous system, is an opportunity for them to make their voices heard. And this, in a context where a survey highlights their need to express themselves and to be better informed, in particular at the level of the available care offer.
Autoimmune, inflammatory, chronic: multiple sclerosis (MS) targets the central nervous system. Precisely myelin, the sheath that surrounds the nerve fibers and plays a major role in the propagation of nerve impulses, from the brain to the different parts of the body. The disease manifests itself in more or less sudden flare-ups. Difficulties in walking, disturbances of vision, balance and coordination, concentration, presence of tingling…: the symptoms vary greatly between patients and depend on the area of the nervous system affected by what specialists call a plaque.
Your place, your choice, your voice
Multiple sclerosis therefore requires multidisciplinary care. But the landscape in terms of healthcare provision does not always appear to be well identified by the patient, as illustrated by the results of a survey carried out under the aegis of two patient associations – Notre Sclérose and SEP’Avenir, d a neurologist, and an MS nurse – with the support of Merck, which has been working for more than 20 years in the management of multiple sclerosis. Title Your place, your choice, your voice, it brought together 570 respondents, all patients. The survey addresses several points, in particular the announcement of the disease, patient information, discussions on therapeutic management and its impact on the quality of life of patients. Two main elements emerge: 54% of patients do not benefit from a follow-up consultation, although this allows the patient to ask new questions that he may have following the announcement of the diagnosis. And 62% consider themselves insufficiently informed about the offer of care for multiple sclerosis.
Specialized MS nurse (based at the Strasbourg University Hospital) within the alSacEP network, Béatrice de Sèze agrees: “caregivers do not think, or cannot, always take the time to explain who does what among all the potential stakeholders: the neurologist, the various nurses, the rehabilitation doctor, the physiotherapist, the orthoptist, the occupational therapist, the adapted physical activity (APA) practitioner, the psychologist, the therapeutic education networks, etc. “. Arnaud Gautelier, Director of the Patient Association Notre Sclérose reports a certain frustration of patients: “The annual appointment of patients with their neurologist does not allow to address all the subjects around multiple sclerosis due to lack of time. And we also realize that some patients do not dare to address certain subjects such as sexual, urinary, social problems“.
Care actors
Béatrice de Sèze insists: “The doctor is not the only one to decide. And an informed patient adheres better to the care”. Hence this need to express oneself and to position oneself as a true actor in it. Patient associations also play a major role in supporting and informing patients. “ A sponsorship program by voluntary patients has thus been set up by SEP’Avenir to support new members.“, illustrates Eva Naudet, the president. She concludes: “the associations also take care of patients who have left the care pathway and redirect them to a multidisciplinary team of health professionals”. Communication, listening and patient involvement are thus the keys good management of multiple sclerosis To find out more, visit www.notresclerose.org and www.sepavenir.org.
“Let’s fight MS”
www.merck.fr/sep, brochures on MS related to diet, the desire to have children, driving, adolescence, caregivers, etc., can be downloaded free of charge.