Thank you.
Good morning from Vancouver. I'm going to speak today about my personal experience. I want to emphasize the absolute need for the promised billions of dollars in new home care funding from the federal government to include a very strong accountability framework. I'm going to explain what happened to me personally as I tried to access the health care system for my husband.
I cared at home for my husband, who was diagnosed seven years before he died with a rare, progressive neurological disease called multiple system atrophy, MSA, for which there is no cure or treatment. I have no nursing or medical experience. I had no health issues, however, so I believed I was able physically and emotionally to care for this person whom I loved.
I'm glad I was able to do this. I think with proper support systems, many others would be able to live at home with dementia and with complex neurological diseases, and to die at home, as so many Canadians want to do.
However, as time went on, and my husband became more uncomfortable and needed more care, I began to feel extremely tired. I sought help. I thought I needed some professional direction for the care I was providing. Despite my urgent calls to my local health authority, Fraser Health, in B.C. over the final sad months of my husband's life, I was not able to access any nursing care or any home support. He declined rapidly, physically and mentally.
He died suddenly at home one morning after falling. I tried to give him CPR, instructed by the 911 operator. Because he was not receiving any nursing or home care services from Fraser Health, and so designating as being palliative, the police and the coroner were called by the first responders who had tried unsuccessfully to revive him. Two days later I received a letter from a medical research group based at St. Paul's Hospital in Vancouver, informing me that the first responders had performed an unspecified experimental procedure on my husband as they were attempting to revive him. They said they had no need to ask permission from me as the next of kin—and I was close by—or specify what procedure they did. I followed up. I was subsequently informed by the principal researcher and emergency physician at St. Paul's that they had no need to inform me: they were sorry.
I don't want to speak today about the impact this whole experience had on my physical and mental health. I felt it must be something like PTSD. I have now met many others seniors who have had similar experiences with the B.C. health authorities. Lack of compassion is not a strong enough phrase to describe what our health care system offers to seniors in this province of B.C. I call it callous and cruel.
The Canadian Nurses Association recently noted that there's inequity in access to high-quality, publicly funded home care. They call for a robust accountability framework for home care to be part of a new health accord. We agree. Nothing less will make a difference [Technical difficulty--Editor]