Health care that's 'devoid of kindness' and 'hipster doughnuts': Sue Robins on surviving life as a patient

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In her second book, Vancouver activist Sue Robins shines a much-needed spotlight on all that's wrong with a health care system that doesn't think a whole lot about patients. — healthing_ca suerobinsyvr patientsfirst patientadvocacy

The breast screening guidelines from the Canadian Task Force on Preventive Health Care, which included no breast cancer experts, were largely based on a flawed study.

Sometimes I don’t have the energy and passion to keep on going. Somebody called me a tireless advocate and I am definitely not a tireless advocate. When you have a child born with a disability, advocating never ends. So yes, I do take rests. I do surround myself with like-minded people. I realize that I didn’t writeto convince people. I didn’t want to always be arguing with people that health care should be rooted in humanity and caring. If you don’t believe that, this book isn’t for you.

What advice can you share with patients and caregivers who find themselves trapped in a health-care system that doesn’t meet their needs?I think it’s important for patients and caregivers to know this is the secret of health care in Canada: you can’t, especially now since the pandemic, rely on health care to be there for you in the way that you could have before. And it’s a chilling realization. I call this the burden of being a patient. It is your responsibility to follow up constantly.

 

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healthing_ca suerobinsyvr We could certainly tell a few horror stories from the LongCovid community. 😢

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