Patient Centered Care

By Kathy Kastner with Zal Press

One of the tenets of Patient-centered care is care coordinated around the patient, rather than around the system. For a PWD, it takes a team.

Who’s on the team

Heather, who’s worked in the Diabetes Management Center since its inception in 1991, has become a leading Opinion Leader in team-work and patient-centered care – involving Dieticians, Exercise, Foot Care and special attention to the sores that may not be healing properly – a hazard for a PWD. The key to Heather’s success was buy-in from the Family Doctors. She points out that it’s unfair to expect Family Doctors to know all aspects of Diabetes Care. At the same time, it was essential to assure these good doctors that the intention was not to take patients away, but rather encourage them to embrace the interprofessional teamwork necessary for PWDs to manage. This took a concerted, proactive effort that proved effective.

Cross training maximizes patient centered care

Along with creating interprofessional support for PWDs, Heather’s team is cross-trained with each team member well-versed in every aspect of care: the dietician can examine feet, the nurse can counsel on diet.

Insulin isn’t the enemy – conquering ‘fear factors’

One of the things Heather tackles in the early visits is the fear of going on insulin. She shares her modus operandi: talk about it right up front, as the reality is, insulin is likely in many PWDs future.

With the fear of needles also looming large, it’s another hurdle Heather takes on at the get-go. ”They don’t leave my office until I’ve given them an injection. I demonstrate with a needle that has nothing in it. Most often they close their eyes and scrunch up their face in anticipation. They can’t believe when I tell them open your eyes; I’ve already done it. Takes the fear away.”

The evolution of an Engaged PWD

Aida, diagnosed 7 years ago, feels she now does a better job of managing. That’s an outcome of person-centered care: when patients and caregivers’ needs are met, this can lead to more self confidence in patients’ own ability, thus putting energies toward day to day management.

As an Opinion Leader, Aida also embraces technology in her care-related communications tactics – sending pictures to her healthcare professionals when she needs answers. She’s become a fully engaged PWD.

The Past and the Future of Patient Centered Care

Since her own diagnosis, in 1989, Heather has witnessed a huge change in care for PWDs: back then testers were the size of toasters, and patients going on insulin were hospitalized for a week, using an orange to learn how to inject.

Now, testers are portable, clinics replace hospital ‘stays’ and patients are encouraged to become more empowered and engaged. However, Jim points out one of the barriers that he feels healthcare professionals could be more sensitive to: PWDs often don’t even know what questions to ask nor do they understand the language and terminology. Aida shares how, in her evolution as an engaged PWD, she now takes notes and then does her own internet research.

The Future of Patient Centered Care

These patients, caregivers and Opinion Leaders hold out hope that the future will see what Heather has described as the Gold Standard for Diabetes Management: incorporating team-work, cross-training and seeking partnerships, such as working with the Emergency Department to get patients with Type 2 Diabetes out of ER and into the Diabetes Management Centre.

“You can educate people until the cows come home. What patients need help with is managing – that’s why we’ve moved away from being a Diabetes Education Center to being the Diabetes ‘Management’ Center.” – Heather

Formalizing the menstrual disorder patient movement: is it possible?

By Zal Press and Holly Bridges

“I alone cannot change the world, but I can cast a stone across the waters to create many ripples.” – Mother Teresa

These words by Mother Teresa are a motivational mantra of sorts for Canadian women who have come to a fork in the road in their fight against fibroids and the debilitating heavy menstrual bleeding they cause.

  • What is the future of the movement?
  • Where does it go from here after two national gatherings?
  •  Is it time to form a non-profit foundation or social enterprise?

Women need to look for ways to seek advice soonerThe movement to create awareness of fibroids and heavy periods in Canada is now some 8,000 strong, between Canadian Women with Fibroids, The UnHysterectomy and the Alberta Women’s Health Coalition. While these groups are working hard to raise awareness and bring hope, it could be argued that their work has a long way to go before becoming a household word.

To-do list

The leaders of these groups all agreed at their most recent gathering in Toronto that something must be done:

    • To increase awareness of menstrual disorders;
    • To work with the medical community, policy makers and politicians to change the way our society perceives and treats menstrual disorders such as fibroids;
    • To increase access to better, faster, more equitable treatment in all regions of Canada;

  • To advocate for and support women who are suffering in silence, and;
  • To formalize the patient movement to generate more support, whether moral or financial, to gain credibility to bring about the necessary changes.

These are lofty goals yet they are achievable.

Caution: Solutions ahead

As the saying goes, “If you don’t know where you’re going, any road will do.”

This means the women who gathered in Toronto are at a pivotal point and must decide whether to work together or separately to formalize the ever-growing patient movement for women with menstrual disorders such as:

Women should be able to access the same standard of care

  • Fibroids;
  • Asherman’s Syndrome (uterine scar tissue that can cause infertility);
  • Polyps;
  • Cysts;
  • Adenomyosis (when endometrial tissue, which normally lines the uterus, occurs within, and grows into, the muscular wall of the uterus);
  • Endometriosis (when endometrial tissue grows outside the uterus i.e. the ovaries, bowels and sometimes even the brain), and;
  • Heavy Menstrual Bleeding (the new accepted medical term for heavy periods caused by a number of conditions)

Stakeholder alert

However this patient movement evolves, and whether it evolves into one or several non-profits or social enterprises, one thing is clear.

There are multiple groups with an interest in women’s health that are perfectly positioned to align themselves with the cause, such as:

  • The Society of Obstetricians and Gynecologists of Canada;
  • Canadian Foundation for Women’s Health (SOGC’s non-profit organization)
  • The Society of Minimally Invasive Gynecology;
  • The Federation of Medical Women of Canada (the voice of female doctors in Canada; we need to hear more from them on menstrual disorders);
  • The Endometriosis Network of Canada;
  • Ovarian Cancer Canada;
  • Infertility Awareness of Canada.

Call to action

Is it time to stop admiring the problem of fibroids and other menstrual disorders and get down to business?

Yes.

How the future shakes out is up to the thought leaders who have gathered so far.

How can you help?

  • Share this blog;
  • Contact:
    • Patricia Lee of the Canadian Women with Fibroids on Facebook,
    • Holly Bridges of The UnHysterectomy (@unhysterectomy)
    • Carmen Wyton of the Alberta Women’s Health Coalition (@cawyton)
  • Share your thoughts, concerns and ideas.

For women, the backbone of our society, nothing is more important than their health.  A happy, healthy woman means a happy, healthy family.

So whether you join this burgeoning patient movement or cheer it on from the sidelines do this one thing moving forward: cast a stone across the waters and create many ripples.

Every voice counts.

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