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My uterus gets no respect: the UF movement gathers steam

UF-Collab-logoBy 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.

StoriesArePowerfulThe 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.


Val explained why she fought for five years to save her uterus, the organ that simply gets no respect.


Mercy, who also underwent fibroid surgery five years ago, described her journey to save her uterus as “traumatizing.”

In our original series of stories Patient Commando highlighted the many gaps in the treatment of fibroids, the inconsistency in treatment between physicians, the lack of awareness in our society about menstrual disorders and, most important, the burden of illness women live with every day.

Now almost a year and a half after our last series, a new set of stories has emerged as we continue to examine the issue and track the progress and achievements of this group.

HaveAVoiceWhile many of the women attending the UF Collaborative Forum expressed frustrations similar to the original group, the big difference this time was having physicians sitting at the table, sharing insights into the challenges they face treating patients. For most of these women, it was their first opportunity to talk with physicians about fibroids outside of the therapeutic relationship. And the same could be said for the physicians who listened attentively to the compelling and gripping personal stories.

Watch in the coming weeks as we pull back the curtain on this incredible day. You’ll hear more from Val and Mercy and other women such as Pat Lee from Canadian Women with Fibroids.

All in all, we’ll discuss six main themes:

Community – What is this uterine fibroid patient group and what do they want to say?

Medicine – The Society of Obstetricians and Gynecologists of Canada has released new treatment guidelines for fibroids. How will this affect physician practice?

Awareness – How will the uterine fibroid message be heard?

Advocacy – Fibroid women have self-organized and even made submissions to the federal government to approve certain drugs. What else can they do, how, when and where?

Collaboration – How do they continue partnering with physicians and other potential partners who may be interested in helping them grow?

The future – Where is this movement headed at this fork in the road? What can they learn from others like the budding Alberta Women’s Health Coalition?

The fight against uterine fibroids in Canada has taken a turn for the better and is picking up steam.

 

For more information about the UF movement:

Holly Bridges

http://unhysterectomy.com/

Patricia Lee

https://www.facebook.com/FibroidsGroup


Click on the graphics to understand why this movement got started…

UF_130720_chart2


…And why it’s gaining momentum today…

 

UF-Collab-Forum (1)

Terry Pratchett: Shaking Hands With Death

Sir Terry Pratchett, the best sellling British fantasy writer who was only eclipsed by Harry Potter, died March 12 at his home at age 66. Pratchett suffered from a rare form of Alzheimer’s disease and was an outspoken advocate for assisted death.

The question I’m left with upon hearing this news is: Was his death UN-assisted?

Sir Terry, diagnosed at age 59, shared his journey with Alzheimer’s widely and publicly while at the same time sparking public debate on the issued of assisted death. From documentaries to lectures he travelled widely to examine the topic. Famously, he was quoted:

“I have vowed that rather than let Alzheimer’s take me, I would take it,” he said. “I would live my life as ever to the full and die, before the disease mounted its last attack, in my own home, in a chair on the lawn, with a brandy in my hand to wash down whatever modern version of the Brompton Cocktail some helpful medic could supply. And with Thomas Tallis on my iPod, I would shake hands with death.”

I trust he got the death he so yearned for.

This video is the famous Richard Dimbleby lecture at the Royal College of Physicians that he gave using actor Tony Robinson as his voice.

An Open Letter to Minister Lisa Raitt

Dear Minister Raitt,

rsz_raittlisa_cpc1Please 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 the stories of these courageous women who have been building a movement from scratch with little support. Their stories are documented here.

I can tell you that the women who contributed to our series of stories are all cheering your disclosure, as it reinforces their bravery to share and to empower others to do the same.

Leadership comes in many forms. It can be as simple as telling a personal story. Sometimes that’s all that’s needed to change lives. Welcome to the conversation.

Best regards

Zal Press

Executive Director
Patient Commando Productions
@ Centre for Social Innovation - Annex
720 Bathurst Street, Suite 200
Toronto, ON
M5S 2R4

To view the entire Canada AM interview with Lisa Raitt click here. Her frank talk about her health starts at the 5:40 mark.

Discover how a small group of women came together to start a movement dedicated to raising awareness about women’s health issues. Our multi-part series starts here.

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”.

HeadshotIn 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 of a single interaction that can evaporate, while experience is the full narrative arc that leaves a lasting impact. The challenge to our healthcare leaders in policy, administration, professional practice etc, is to undertake methodologies for engaging patient and family voices that ensure the best service, safety and quality outcomes.

How do our institutions currently stack up to the challenge of patient experience? The Change Foundation studied the emergence of Patient and Family Advisory Councils (PFAC) in Ontario since the enactment in 2010 of The Excellent Care for All Act (ECFAA), which mandated that hospitals “establish a patient relations process to address and improve the patient experience.” The Change Foundation study, “Patient/Family Advisory Councils in Ontario Hospitals: AT WORK, IN PLAY (Parts 1-3)” (April 2014), found that almost half of councils interviewed were in infancy. Furthermore, while the report identifies 7 categories in which the PFACs are accountable, there is no dedicated position representing patient experience. For many institutions PFACs are simply the first tactical step to engage with patients, and by no means the only patient engagement strategy available.

It is our view that a commitment to prioritize patient experience must come from executive leadership, to instil patient centricity as a core principle of the institution and its culture, demonstrated through a strategic partnership with patients.

We call on Minister Hoskins to act BOLDLY in his capacity as the province’s healthcare leader and to role model the expectation mandated by the Premier by “putting patients at the Centre.” How? By bringing the patient voice to the Ministry with the creation of:

 The Minister’s Patient and Family Advisory Council.

 We view this Patient Council as a professional advisory panel composed of dedicated patient experts with the appropriate professional patient experience and the personal experience of chronic illness informing their perspective. There are numerous qualified patient experts who fit this criteria – people who:

  • Are engaged in the global conversation around and are familiar with patient-centred care and patient engagement initiatives
  • Understand the need to redevelop the language of partnership in the discourse between patients and healthcare professionals
  • Have a demonstrated understanding and experience with patient and family advisory councils
  • Have demonstrated a capacity for building, supporting and advocating with a patient voice.

As The Change Foundation report emphasizes, patient experience is an evolving trend that demands that this Council must perform at the highest level. Consequently we do not view it as a volunteer position, as is common in hospitals. Rather, its members must be properly compensated on equal terms as other expert advisors and consultants. They need to be accountable and perform according to a specific scope of work in order to have maximum impact.

The Minister’s Council will advise on ministry strategies with the exclusive objective to improve patient experience. By applying patient experience across the breadth of the ministry, Minister Hoskins would be faithfully demonstrating the fundamental principles of collaboration and transparency that form the core of the Mandate letter from the Premier.

Ultimately, if Minister Hoskins wants to deliver on his promise to improve the patient experience, he’s going to have to walk the talk, and that means making patient influence felt system-wide. It’s time to elevate the recognition of patient experience as the key driver of system transformation if we are to build a compassionate and sustainable system that serves the health needs of the entire population.

It’s no longer good enough for healthcare services to be delivered without the patient voice having a reserved seat at the government table. We believe that a dedicated role for patient experience, provided by a patient’s voice, has the highest potential to develop meaningful patient centred strategy, the most effective tactical operations and the best health outcomes for patients and families. It’s time to integrate patient experience into everything the Ministry does, rather than function as a solitary initiative.

It’s time to put the patient in Queen’s Park.

 Click here to follow the debate on the topic at HealthyDebate.Cahealthydebatelogo

 

Zal Press is Executive Director of Patient Commando Productions, a producer of authentic patient experience programming for health care professionals, and Co-Chair of the Beryl Institute Global Patient and Family Advisory Council.

Dawn Richards is a science and patient consultant. She is Vice President of the Canadian Arthritis Patient Alliance, the first patient advisor of the Canadian Medical Association’s Wait Time Alliance, a member of the Institute Advisory Board and Ethics Committee of the Institute of Musculoskeletal Health and Arthritis (CIHR), and a Patient Panel Reviewer of the BMJ.