Thank you for giving me the opportunity to talk about the concerns of Quebeckers with multiple sclerosis.
The Quebec Division of the Multiple Sclerosis Society of Canada has over 8,000 members. For over a decade, it has been working on raising awareness of the needs of people with multiple sclerosis.
Our office is in Montreal. There are also 25 local chapters across Quebec. There are an estimated 13,000 to 18,000 people with multiple sclerosis in Quebec. Quebeckers are fortunate to have a strong network with 16 multiple sclerosis clinics that ensure medical follow-up. Five of the clinics also conduct research.
The Quebec division offers a number of services. We provide reliable information on multiple sclerosis, treatment options and research. We offer various types of resources, such as publications, a Web site, a quarterly newsletter, information sessions for recently diagnosed people, conferences, an annual congress and a seminar for health professionals. We also provide a range of support services, such as support groups, moral support, referrals to other resources in the community and advocacy. We also have a youth component, which includes a quarterly newsletter, a Web site and a camp for children with a parent with multiple sclerosis. In addition, we offer physical and recreational activities to promote wellness and break the isolation, and we lend equipment.
Today, I would primarily like to talk to you about the continuum of care and the needs of caregivers. Multiple sclerosis most often strikes young adults, and we know that living with this episodic and progressive disease requires frequent adjustments. The residential needs of those living with multiple sclerosis are varied, since the disease itself varies from one person to the next. Some people have to rely on their LCSC for in-home support services on an ad hoc or permanent basis. Others also have to modify their homes to make them accessible.
When people can no longer safely remain at home, they are faced with some difficult choices. At this time, there are very few residential options that include a service component. Nursing homes are the only available option all too often. Therefore, some people have no choice but to move to a nursing home. There are cases of couples that had to separate after a few decades of living together because they did not have any other choice.
There are several possible solutions, among which are increased funding for home care and access to home adaptation programs within a reasonable timeframe. We would like institutionalization to be considered as a last resort and priority to be given to supporting people in their natural environment. The majority of people with multiple sclerosis would prefer to live in an environment that is similar to a traditional home with services and care.
In addition, we would like the development of other home resources to be supported, especially for young adults who can no longer remain in their living environment. That way, we would free up space in nursing homes for people in the final stage of life.
Finally, we would like the living environment approach to be integrated into nursing homes in order to create living conditions that are stimulating and mindful of people's specific needs.
We know of young adults in nursing homes that get lost in a sea of elderly people and so do not receive services appropriate to their age and condition.