This is Maureen. She is a patient advocate in the rare disease community, chair of Cochrane’s Consumer Executive, and a patient partner on numerous research projects.
“What keeps me up at night is the cruelty of people dying without their loved ones by their side…those first bleak Italian scenes of beds all lined up, and then the heart wrenching stories of Canadians recounting their loved ones’ final days.
I worry for my husband who is currently undergoing chemotherapy, and for my 88-year old aunt in a Montreal retirement residence. As an immunocompromised patient, I live in fear of contracting COVID myself and transmitting it to my husband.
My fears have surfaced in the past five weeks when my husband was admitted to the hospital due to a fever.
Dropping him off at the Emergency Department and watching him walk through those doors, not knowing if his condition would take a turn for the worse, were harrowing experiences.
So what to do in this situation? There is no doubt my volunteer work in the healthcare field has kept me sane. I am doing my best to ensure that the patient perspective is heard in the rapid decisions that must be made, and flurry of vital research being conducted. My fear is that the patient engagement gains made over the last two decades will be lost at a time when they are more important than ever.”