Fighting the scourge of fibroids with patient advocacy

By Zal Press and Holly Bridges Given the complex and frustrating journey so many women with fibroids must endure, what can women do to take more command of the journey and get better outcomes for themselves and others? We have heard how greater awareness of treatment options can empower women to advocate for themselves with their physicians. We have even heard from physicians themselves encouraging women to do so.

This kind of self-advocacy can make a huge difference on an individual level. But to drive real change in practice, the collective voice of women across the country needs to be leveraged. System change and health reform that will impact the lives of millions of women, not just one, is the result of collective advocacy. And that is what we’ve come to understand as a movement.

“You can spend a lot of time admiring a problem but no change will happen until you push on the systems that are causing the problem or the barriers that are preventing you from moving in new directions,” said Carmen Wyton, a social innovation champion, chair of the (Alberta) Premier’s Council on the Status of Persons with Disabilities and head of a new Alberta Women’s Health Coalition.

The recent gathering [...] continue the story

My uterus gets no respect: the UF movement gathers steam

By Holly Bridges and Zal Press

In the second gathering of Canadian women who suffer from uterine fibroid tumours, patients and physicians alike rolled up their sleeves to share and learn how this group is beginning to influence better health outcomes and improved quality of life for the one in four Canadian women suffering from this condition.

The day was recorded on video and graphic illustrations that captured the emotions and intensity of the day.

The UF Collaborative Forum in Toronto was the first time that women and gynecologists came together to share their different perspectives on the gaps in health care that often leave women to bleed with limited choices of treatment. This groundbreaking event began the vital conversation between healthcare professionals and patients with the goal to establish a unique collaboration that tackles the critical issues affecting treatment and care.

The women who attended represented all stages of the uterine fibroid fight, including those facing surgery, those on the brink of emotional and physical collapse from years of suffering from painful and often uncontrollable bleeding, and those who have emerged victorious and symptom-free after hysterectomy or other treatments.

In our original series of stories Patient Commando highlighted the many gaps in the treatment [...] 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

Patient feedback provides focal point for future of care at KGH

It cannot be denied that Kingston General Hospital has received some less-than-favourable feedback over the years. Now, hospital officials are looking to connect with the public in order to better understand the needs of patients and ultimately implement programs and practices that will be as effective as possible.

On the evening of Nov. 10, KGH held a public event called Patients Know Best, which saw members from the hospital’s Patient Advisory Council, formed in February of 2010, speak about their own experiences at the hospital and how they are helping to shape the future of care delivered there.

“Input from patients is critical to how we make improvements in hospital settings and for the whole experience of patients,” said KGH Vice President for Clinical Administration and Professional Practice and Chief Nursing Officer Eleanor Rivoire.

Advisor Lidia Dorosz gave a heart-felt account of what it was like to witness her mother be neglected, often to the point of abuse, by nursing staff at the hospital as she lived her final days.

“I am a council member because I want to make a difference,” she said. “I want to hold people accountable…it’s time that we (are able) to feel safe about going to KGH.”

Overall, Dorosz said [...] continue the story

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