When patients are seen as “The Enemy”

by Carolyn Thomas  @HeartSisters

My daughter loves her career as a probation officer. She is very good at what she does, and finds the work both challenging and rewarding. Yet her client case load includes some of the most unsavoury of individuals, found guilty by the courts of child abuse, domestic violence, sexual assault or worse, many of them  living with added complexities like addictions or mental health issues. She’s been insulted and screamed at by distraught clients. Police are sometimes dispatched to her workplace to intervene in potentially dangerous crises. Few of us could even imagine working in her office every day.

Yet whenever I ask my daughter what kind of day she’s had today, I marvel at her continuing ability to truly care about the work she does, despite the many challenges of working within the criminal justice system, dealing with an often-desperate clientele, and an almost overwhelming legal bureaucracy.

Contrast that perspective with the collective unrest among physicians who seem to hate their jobs.  Continue reading “When patients are seen as “The Enemy””

The weirdness of Post-Heart Attack Stun

by Carolyn Thomas  @HeartSisters

Jodi JacksonI‘m laughing right out loud as I type this post, although I am the last person you’d think would ever laugh at another person’s heart attack story. Usually. But I love Jodi Jackson’s concept of “Post-Heart Attack Stun” – and I just had to laugh at her delicious examples of this concept at work, both during and after her heart attack at age 42 exactly two years ago.

Although I didn’t realize until I read about Jodi that there was even an official name for this cardiology concept, I sure knew what she was talking about.   

Post-Heart Attack Stun is what Jodi calls the period following a heart attack where everything seems so surreal that you really don’t absorb what has just happened.    , Continue reading “The weirdness of Post-Heart Attack Stun”

What really goes on in your friendly online patient group

by Carolyn Thomas  @HeartSisters   3rd in a 3-part series:

It turns out that online patient discussion forums may not all be the noble grassroots support groups that I once believed them to be. For example, unless they are small independent online sites, or have secure academic, government or clinical funding  (like Virtual Hospice, which operates its active end-of-life care community thanks to ongoing financial support from the Winnipeg Regional Health Authority and Cancer Care Manitoba), the site owners of most major online patient support groups are figuring out how to “monetize” their work. That’s how biz developers talk . . .

Make no mistake, my heart sisters: few online site owners (except for individual patients hosting those smaller private forums) are running a feel-good charity for us patients purely out of the goodness of their hearts.  Continue reading “What really goes on in your friendly online patient group”

Online patient groups: why so under-used?

by Carolyn Thomas @HeartSisters    2nd in a 3-part series:

This may come as a shock to health care professionals, particularly to the ones who cringe when their patients bring in health information they found via Dr. Google. But it turns out that the accuracy of information found on online patient support groups is actually surprisingly reliable. For example, the British Medical Journal reported that most false or misleading statements in online patient groups are in fact rapidly corrected by other participants in subsequent postings. And there aren’t many of these false or misleading statements. The journal published an interesting study that found only 10 of 4,600 online patient group postings studied (that’s just 0.22%) were actually found to be false or misleading. But of these, seven were identified as such by other site participants and corrected within an average of four hours and 33 minutes.(1)

  Continue reading “Online patient groups: why so under-used?”

Discover. Join. Leave. The life cycle of online patient groups

by Carolyn Thomas  @HeartSisters 1st in a 3-part series

As you know, online support groups exist for those living with just about every possible health condition. Some support communities even target very specific discussion group members like Lesbians with breast cancer or Jewish alcoholics, as well as a range of issues beyond medical conditions (e.g. parents of twins, bereavement, victims of professional misconduct).

When it comes to going online to seek information, answers or support from your peers, it does appear that there’s a lid for every pot.    Continue reading “Discover. Join. Leave. The life cycle of online patient groups”

Diagnosed with what? Brugada Syndrome?!

by Carolyn Thomas  @HeartSisters

Alicia Burns“A lot of people ask me how I knew something wasn’t quite right with my heart. It’s hard to answer, because I’ve suffered with palpitations and chest pain for years, but they didn’t concern any of the cardiologists I saw.”

In fact, Alicia Burns’ doctors didn’t get concerned for 14 years, despite many consultations and tests for her distressing and ongoing symptoms.

Alicia, now a 34-year old mother of five children, tells the harrowing story of the moment she first heard the words Brugada syndromeContinue reading “Diagnosed with what? Brugada Syndrome?!”