Tag Archives: chronic disease

“We are all patients.” No, you’re not.

17 Dec

by Carolyn Thomas  @HeartSisters

patientI read recently about a conference on breast reconstructive surgery following mastectomy, to which not one single Real Live Patient who had actually undergone breast reconstructive surgery following mastectomy was invited to participate. This is, sadly, yet another example of “Patients Excluded” health care conferences – in stark contrast to the growing number of notable conferences that have garnered the “Patients Included” designation.*

The result of attending a “Patients Excluded” conference is just as you might imagine: hundreds of people working in healthcare getting together to talk at each other about caring for people who aren’t even at the table. Or, as one physician arguing for  “Patients Excluded” conferences protested online:

“I already hear patients’ stories all day long in our practice. Why should I have to listen to more stories at my medical conferences?”

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Is this a “revolution” in med school education?

22 Aug

by Carolyn Thomas  @HeartSisters

After my heart attack, while I was deep in the throes of a truly crippling depression, my doctor referred me to a cognitive behavioural therapist for help. She was an extremely perky person, and used to say things to me like: “I have a great idea! Why don’t you sign up for a really interesting night school course at the college?”  I remember looking back at her and thinking: “You have absolutely no clue.”  If only I’d had the energy, I would have thrown a heavy object right at her head…

I could scarcely motivate myself to even brush my teeth every morning, so how on earth would I manage the registration process for this ‘really interesting course’, never mind actually getting myself out the door to attend night school? 

That’s the kind of suggestion you might make to a perfectly healthy person, and it told me instantly that this therapist had no real comprehension of how debilitating post-heart attack depression can actually be. See also: Healthy Privilege: When You Just Can’t Imagine Being Sick

That’s why I was so pleased to learn about a Canadian university’s innovative new mentorship program that – besides teaching health care students using traditional textbooks, labs and lectures – will link health mentors (adult volunteers actually experiencing chronic illness like heart disease) with teams of students from several health care faculties starting this fall. First year students with the Dalhousie University Health Mentors Program (all from the Faculty of Health Professions, Dalhousie Medical School and the Faculty of Dentistry) will meet four times a year with their assigned health mentors to ask questions like:

  • What is it like to live with heart disease?
  • What are the emotional ups and downs?
  • How do you eat well and exercise when you don’t feel well?
  • How do you manage pain, shortness of breath, fatigue and other cardiac symptoms?
  • How has your life changed?  Continue reading