Partenaires Neuro is a group of five organizations dedicated to supporting people living with a degenerative neurological disease, and their caregivers Speaking with one voice, these organizations advocate for the needs of those they represent in addressing political decision-makers.
The five organizations are:
We want to ensure that the 200,000 Quebeckers living with a degenerative neurological disease (DND) have optimal quality of life throughout the disease’s entire progression.
We act as a quality of life and freedom of choice watchdog for people living with a DND and their loved ones.
People living with a DND must cope with its unpredictable progression.
They are forced to quickly grieve a series of losses, which makes the care they need unique.
DNDs can impact mental health and even be stigmatized.
Medical leaves of absence are common in people living with a DND, which can contribute to their isolation.
Their care needs increase as the disease progresses.
People living with a DND sometimes have no choice but to move into a care facility, even though 80% would prefer to stay at home.
People living with a DND spend an average of 15 years in a residential and long-term care centre (CHSLD).
For some, it is over 25 years.
Whether living at home or in a care facility, people diagnosed with a DND feel isolated and like they have no say in the decisions made about care programs, which can affect their quality of life.
Loved ones must make up for the lack of flexibility of existing programs.
It is estimated that for every person living with a DND, there are three informal caregivers (family members, a partner or friends) involved in their care.
A survey conducted in 2021 revealed that the vast majority of people living with a DND and their caregivers are dissatisfied with the current state of affairs in the healthcare system.
More than half of people living with a DND say they want more autonomy.
More than half of people living with a DND, and an even higher number of caregivers, suffer from mental health issues.
1) Informal caregiving
We want to ensure the implementation of the Quebec government's 2021–2026 action plan for informal caregivers, which aims to give more support to the caregivers of people living with a DND.
2) Home support
We want to ensure that the programs and services available to people living with a DND are all adapted to their reality, that sufficient hours of care are provided and that this care is given by home health aides who are specially trained. We want to explore all the means of increasing the autonomy of people living with a DND.
3) Care facilities
Care centre options need to be adapted and diversified. Institutional facilities and services must meet the needs of people living with a DND and respect their life habits.
4) Access to innovative treatments and clinical trials
The drug approval process needs to be accelerated, as does the reimbursement process. Rapid access to treatment can slow the progression of a DND, leading to greater autonomy and quality of life for people living with a DND.