An Open Letter to Minister Lisa Raitt

Dear Minister Raitt,

Please accept my applause and congratulations for the courageous and open conversation you had on Canada AM about the details of your health issues.

Its estimated that as many as 20% of women suffer from fibroids. Your experience reflects that of many women – that “sometimes options are not presented” and “I didn’t know any of this until it was too late”. And as a consequence so many women suffer in silence and unnecessarily endure extreme treatments.

In case you don’t know, sharing your story is a breakthrough in leadership echelons for this important conversation. You are correct – there’s a lot of stigma attached to speaking about women’s conditions publicly. Usually its in whispers, in corners, or simply with tears of isolation. Women across the country have been addressing these gaps in treatment, diagnosis, and the social and economic impact by self organizing and sharing their stories.

Your leadership role model will empower women to be assertive voices and participants in their healthcare so that they can act, and get appropriate treatment, before its too late. We have been documenting the rise of women’s voices on the issue of fibroids specifically, and bleeding disorders in general and you can follow [...] continue the story

It’s Time to Put the Patient in Queen’s Park

By: Zal Press and Dawn Richards

September 28, 2014

As dedicated patient experts we welcome Ontario Premier Wynne’s Mandate Letter to Health Minister Eric Hoskins. We are encouraged that in an interview with the Globe and Mail (Kelly Grant, July 11, 2014) Minister Hoskins committed himself to “improving the patient experience” and the Mandate letter leads with a priority to “Putting Patients at the Centre”.

In our many patient roles, we’ve heard the platitudes of “patient-centred care” and “patient experience” bandied about like badminton birdies that can fall to the ground with nary a concern and then replayed with the same casual whimsy.

Will this time be different? We’d like to give Minister Hoskins the benefit of the doubt and support his intent with a vision that embraces the opportunity that a focus on patient experience provides.

We start by providing a common understanding of the “patient experience.” The Beryl Institute, a global community of practice and premier thought leaders on improving the patient experience in healthcare, defines patient experience as: “the sum of all interactions, shaped by an organization’s culture, that influence patient perceptions across the continuum of care.“ This definition tells us that patient experience is more than just satisfied patients. Satisfaction is the result [...] continue the story

Over 200 Artists tackle the Illness Experience

“Mira, Mira on the wall” was the refrain that came to mind when young Mira Berlin (MFA) presented her idea 3 years ago for an art show representing the personal illness experiences of artists. After she left my office, I thought about whether the refrain’s connection to the fairy tale was applicable to the concept.

Three years later, the fairy tale reference can be discarded. A collective of European academic, art and industry leaders has produced a vivid expression of illness through the eyes of artists working in collaboration with patients.

‘Perspectives – Art, Inflammation and Me’ is an initiative designed to add a different dimension to the current understanding of immune-mediated inflammatory diseases (IMIDs) and their impact on patients and society.  The exhibition debuted at the 9th Congress of the European Crohn’s and Colitis Organisation (ECCO) in Copenhagen, Denmark on February 20 with more than 100 unique pieces of art.

Mira was interested in the subjective experience of disease to showcase the potential of Fine Arts “to transcend the bounds placed on patients upon their diagnosis” and to highlight “the incredible power of images to demystify illness and reconcile us to disease, and even to death.” At the time, her thoughts were [...] continue the story

Who’s important in my end-of-life plan?

Editor’s Note: This article was originally posted on BestEndings.com  a website whose mission and mandate is to help navigate personal and medical decisions as life’s end nears.  Founder, Kathy Kastner, encouraged me to tackle the subject, after all, who’s a better candidate for an abrupt, or unpredictable ending, than a 61 year-old male with a life-long chronic illness. Its definitely a touchy subject, but she gave me some tools and direction to get started. Here’s my first take: Who’s important in my end-of-life plan?

Contemplating that question, it took me a moment to realize that “I’m important!”  Taking Inventory of Who I Am It starts here, similar in some respects to a computer chip, the intelligence that powers the organism, I am:

61 years old, orphan son Living with Crohn’s disease for 30+ years, with multiple surgeries, treatments, medications Husband of 32 years in a loving relationship (more on this later) Parent of 2 young adults who are compassionate, thoughtful, open minded critical thinkers.

Who are my ‘important’ extended family relationships?

I’m a younger brother (yes at 61) he and his wife are present in my life. I’m a cousin to people who are important to me. Some of these relationships play major continuing roles that are vital to my [...] continue the story

Birth of a New Patient Movement

How do patient advocacy groups get started? What motivates people to get engaged and involved? How do they become enabled and empowered?

A milestone event was held on July 20th, 2013 in Toronto to highlight the plight of women suffering from uterine fibroids and the associated heavy menstrual bleeding.

Women from across Canada who suffer from uterine fibroids came together to meet, share and brainstorm to create the first authentic patient voice in Canada regarding this important area of women’s health.

The significance of this event lies in the impact of this condition on the whole patient experience from living with the disease, diagnosis, treatment to follow up. Uterine fibroids account for more hysterectomies in Canada than any other condition. According to the National Uterine Fibroids Foundation (NUFF) in the U.S., up to 80 percent of all women have uterine fibroids. While the majority never have symptoms, one in four ends up with symptoms severe enough to require treatment and the experience can be horrifying.

In Canada, there is no organization such as NUFF, no unified or organized patient voice, to advocate for timely and appropriate care and treatment of women who have suffered unbelievable pain, discomfort, embarrassment, humiliation and anger due to uterine [...] continue the story