The MS Society and Neuro Partners ask the Quebec MPs to address three important issues
Open Letter: Squaring the circle?
Caregivers can devote up to 20 hours every week to a person living with a progressive neurological disease. 28% percent of these caregivers are in distress, which is double the proportion of caregivers that take care of a person living with another kind of disease 1 . The care they provide at a patient’s home enables the government to save millions of dollars. However, the person with a progressive neurological disease often does not have access to certain innovative treatments that would improve their quality of life and would help with their autonomy, which would lessen the stress on the caregiver. When the caregiver becomes exhausted, and the ill person seeing its condition being aggravated, he or she leaves home for a long-term care centre. As soon as in their forties, the individuals receive one bath and are being moved from their bed only once or twice a week. They get help to eat for about 10 minutes and are required to go to bed at 7 pm, same time as the nonagenarians on the same floor.
This is not acceptable. But are there any solutions? Neuro Partners – progressive neurological diseases is convinced that there is. This group, formed by five organizations (Amyotrophic Lateral Sclerosis Society of Quebec, Federation of Quebec Alzheimer Societies, Multiple Sclerosis Society of Canada-Quebec Division, Muscular Dystrophy Canada and Parkinson Québec) is the voice of 200,000 people in Quebec affected by either of these diseases.
On November 9, our group met with several MNAs at the National Assembly to expose possible solutions and filed a memorandum named « Acting to improve the quality of life of people with progressive neurological disease ». We propose the establishment of a network of housing facilities that would better meet the needs of people living with a progressive neurological disease. We reiterate the importance of access to innovative drugs and suggest ways to increase support for caregivers.
We also urge elected officials to quickly implement the recommendations included in the Committee on the living conditions of adults staying in residential and long-term care centres report, published in June 2016. We propose a set of measures that would allow more than 200,000 Quebecers to live in dignity. It is high time to act.
Louis Adam, Executive Director, Multiple Sclerosis Society of
Canada - Quebec Division
Francine Gendron, Executive Director, Muscular Dystrophy Canada
Nicole Charpentier, Executive Director, Parkinson Québec
Claudine Cook, Executive Director, Amyotrophic Lateral Sclerosis Society of Quebec
Jean-François Lamarche, Executive Director, Federation of Quebec Alzheimer Societies
1 Mapping Connections : An understanding of neurological conditions in Canada report; September 2014; Public Health Agency of Canada, Health Canada, Government of Canada and Neurological Health Charities Canada