Join us as we talk with Wendy Quinn, President of Canadian Hemophilia Society, about being a mother of a child with hemophilia and an advocate for all those with bleeding disorders. We explore Wendy's various roles as a primary care provider and some potential suggestions for navigating primary care provider visits. This episode is in English only.

Please note - Nothing that is shared in this episode should be interpreted as medical advice.

Okay, so welcome to this

episode of The Flow.

2

I'm really excited by our guests

that we have on the episode today.

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Today we have Wendy Quinn joining us.

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Wendy is a mother of a son

with severe hemophilia A.

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Wendy has been the volunteer chapter

for hemophilia Saskatchewan for over

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10 years and is a concurrent board

member for the Canadian Hemophilia

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Society and the current president.

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Professionally, Wendy is a

primary nurse practitioner with

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a specialty in adult gerontology.

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And today she works predominantly

in the First Nations community with

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the focus on prenatal women's health

and chronic disease management.

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So welcome, Wendy.

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We're glad to have you on the episode Rev.

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Thank you so much, Natalie.

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Thank you for having me.

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This is a complete privilege and

honor to be a guest on your show.

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Excellent.

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Excellent.

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So, how about we start with, can you

start by telling us your experience

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in the bleeding disorder community?

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So I think my experience

comes authentically.

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Bleeding disorders was

completely not in my world.

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It had, it occurred when my son was born

and he was born with severe hemophilia,

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a, he was a, genetic mutation, and it

was not in our family prior to his birth.

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So it was a new discovery for us,

a new world for us, a world of

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quite a lot of trepidation fear.

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Unknown situation that really provoked

action and created a new world.

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And in many, many, many ways, so yeah,

so that's how, that's how we, I entered

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into the world of bleeding disorders

when it first came upon us, it was

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about my son, truly, truly was about

my son, and so at the time, I took him

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on, took it on, took everything on as a

sole artist, and a sole artist, meaning

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that I had the health care background.

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I began to understand that his

bleeding disorders very well.

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Obviously, I studied it even more

extensively now that my son had it.

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So that before I became an expert.

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For my son, therefore, I

thought I could do it all.

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So I was very keen on, on not having him

be defined by his bleeding disorders.

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I was very keen on not having.

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to be a part of any sort of group or

any kind of setting that was dedicated

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to bleeding disorders because I

thought we are not bleeding disorders.

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We are a family that has a

child with a bleeding disorders,

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but that will not define us.

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So I was on a very high horse at

the beginning of this whole venture.

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And it was only my son

who taught me different.

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It was my son that made me humble,

and he came to me as a six year old

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child with big tears in his eyes,

and he said, Mom, am I the only

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person in the world with hemophilia?

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And that's when I, my whole, my heart

crumbled, and I went, what have I done?

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What have I done?

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And it was that day that I called

the Haemophilia Saskatchewan chapter.

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I said is there anything that I

can do to give my son an experience

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where he feels like he's not the only

person in this world with Haemophilia.

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They invited me in, open arms,

Like a big old family, and I mean,

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because of my background, because

of my health care background, they

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really wanted me to join the board.

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And so then I did.

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And so I joined the board as a, as a

person that was, had no board experience.

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And then really elevated to a

level that, that they needed

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a leadership type of person.

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I'M not a board person, I never was, but I

knew that it was a call to action for me.

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And there was a need, and there was

people who were open arms, welcome me.

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Now I must return the favor,

or I must do my part as well.

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So with that in mind, I gave it my all.

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I learned how to be a board member.

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I learned how to lead chapter from

for many years and along that.

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Time as well.

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I also was on the CHS board and eventually

was on there long enough so that they

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started to say, okay, she might know

something because she's been here

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long enough, she should know something

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So then she.

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I think process of, Oh my God,

she's been here the longest.

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Just let's get her in the position.

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No I learned it very, I think when I

started on the board, I knew nothing.

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And from the great leaders that

we've, that I've come up or had the

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opportunity and the privilege to

work alongside of, I learned it.

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Every step of this journey has been

taught to me by those who have walked the

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walk, Natalie, and I feel incredibly like

again, blessed to have this experience

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now as I'm sitting in the role myself

and have been for the last two and a half

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years, I go, wow, I remember sitting in

this position when I first joined the

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CHS board and going, How do I get to be

like her and that person I was pointing

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to was the president at the time, and

I thought, wow, you know, what to take.

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And so that's my journey with

the bleeding disorders community.

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I always go back to the fact

though that I am a mother of

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a son with severe hemophilia.

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And that was the reason why I'm here.

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And that started this whole.

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leading disorders journey for myself.

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What a heartwarming story, Wendy.

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I think that's just a really special

moment that you're sharing with us

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about when your son came to you and you

made that realization of, oh my gosh,

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I have to become part of something

bigger so that he has those experiences.

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And knows that he's not alone and

knows that he's not the only one.

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What a beautiful story.

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And what an amazing message

to others in the community.

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Considering, as you said, you started out

with no board experience at all and just

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out of passion and the desire to learn and

the desire to be a part of the community.

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Manage to find your way in a current

president position for the board

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of the Canadian Hemophilia Society.

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Like what, what a great message for

anyone out there who thinks, oh, you

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know, I don't have any board experience.

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I can't be part of that.

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You can, you can do that, and you can be

part of those types of bigger changes even

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if you come in without any experience.

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So I, I love.

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Sharing that story that's such a

great story, both from your personal

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and even your work in the board.

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It's it's such an amazing

journey and story to share.

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Wendy, you and I have talked about our

mutual interest in menstruators and

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women living with bleeding disorders.

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So in this journey of yours, when did

that start to become an interest for you?

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If I was not in the position as I

am professionally, Natalie, and I'm

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just going to be honest with you.

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If I was not in the professional

role that I have right now, I may

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not have been such an advocate.

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I do not experience

bleeding myself as a woman.

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And I have my son, so I can see how

many people get siloed into their

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own experiences and really have their

eyes sort of not aware or not open

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to what other people experience.

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But because and this is where

my two worlds are colliding.

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I see women in practice.

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I see I am a primary care provider.

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So I see that woman that will come

in with heavy menstrual bleeding.

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I see that woman that would have like,

bruises and said, you know, my mother.

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used to have really heavy periods,

no one ever listened to her.

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And I've had heavy periods since

I was, you know, blah, blah, blah.

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And I'm like, all of a

sudden, my wheels are turning.

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So I've seen this in

professional practice.

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And so women's health to me is

a very, very important because

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women come to me for, for care.

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And All women.

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So it's an all encompassing it's an all

encompassing experience, and a large

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part of why a woman presents sometimes is

because of menstrual issues, because of

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pelvic pain, because of, painful periods.

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I think on the run of a week, if I

was going to say how, if I get a, a,

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a list of people who are booked with

me, and if it's a woman, it's usually

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because they have pelvic pain and it

has something to do with, with bleeding

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or not with bleeding, but that's

what that's the reality that I see.

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Now, because I'm a woman, and I'm a

provider, and I'm a nurse practitioner,

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those are all the three reasons

why women want to come and see me.

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So I attract women into practice.

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You know what I mean?

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All of those reasons will make

a woman want to see me and

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feel comfortable to see me.

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And so then I get, I get, I'm privileged

to be able to serve these women.

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And so, with my knowledge

of bleeding disorders.

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From my role in the Canadian Haemophilia

Society and, and my own son and, and our

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haematologist and all of those wonderful

people who have helped educate me.

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I now take that education that

I would never have known and

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learned had I not had that role.

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And I now transfer it directly to

the patients that I see directly.

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And I say, you know what?

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Here's.

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Here's what this could be.

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Here's how we can treat.

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Here's where you can go.

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Here are the resources.

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And I go, wow, you came

to me with this problem.

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And I have so much knowledge about it.

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And I'm thinking, it's your lucky day.

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It's your lucky day.

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You know, and that's what I feel every

time some, a woman presents to me with,

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with bleeding and because of, of my

extra knowledge that I have in that area.

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So it's interesting that you bring

up your extra knowledge and, and sort

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of this background that you bring

to the patients that you work with.

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And I'm wondering as a nurse practitioner

with your experience, with all of the

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knowledge that you bring, we know that.

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The delay in diagnosis for

women with bleeding disorders

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is an average of 16 years delay.

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So I'm wondering if you have any thoughts

as a nurse practitioner around, you

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know, around that delayed diagnosis

or, or those that are undiagnosed.

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Every single time I have had exposure

to these statistics and, The stories

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that have come from the women in the

bleeding disorders community who have

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seen their providers, the primary care

providers have not been believed in,

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in their story who have suffered for a

long time, I always go, first of all,

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I need to make sure that I'm listening

and that as a primary care provider

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that I am making sure that I don't

Minimize any of the story that they are

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telling me, and then I think to myself.

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You know, it would be wonderful if I

could include all of the primary care

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providers who hear the same story

that I hear and approach people and

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approach our women the way that I

would with the knowledge that I have.

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Is that gonna happen?

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I don't think so, because

I'm, that's the reality is not

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going to allow that to happen.

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So I really like the idea of, sort

of a consistent approach to a problem

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that presents, meaning that there is

when you see this, this is what you do.

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If you need to figure out a test to

order for Von Willebrand's disease,

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this is the test that you were like.

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I wanted to see a standardized approach

to recognizing bleeding that is abnormal.

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And I know those tools exist in a lot of

the resources That I've been presented

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with at all of our conferences, but

they're not universal and they're not

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out there and they're not being used.

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So creating the avenues for primary

care providers to know that these tools

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exist and getting them in a place where.

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tHey're not just another app or

just not another place to Google.

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It's actually, in a portal that is

evidence based that providers would trust

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that is backed up, by data, by research,

by science, the science,, we need a

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spot where, a provider would go when

they're stuck and don't know what to do,

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and then they find that resource there.

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That's the only way that I

see a consistent message and

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approach to women in bleeding.

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I that's the only place that I could

see that working across the board for

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primary care providers, because being on

Google and going and finding things, it's

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such, I mean, you know, we all do it,

but to actually know what the best app

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is or what the best, you know, algorithm

is what, there's no, we don't have

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time as primary care to tease that out.

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But if we had it, if it wasn't a place,

a universal place where those, if it was

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in a universal place where it was a high

rated, portal of information and they say,

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oh, here it is, then we'd have a lot more

buy in from our primary care providers.

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Do I know a place like that?

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Not really, but I do.

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We use a few resources that are

very, very universal and very trusted

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by the healthcare professionals.

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And I think if we can tap into those

areas and tap into those avenues,

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I think we would have something.

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But that's just my opinion.

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No, thank you.

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Thank you.

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That's really that's that's a really

good point about we do have the tools.

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There are lots of tools that

are available to be utilized.

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And yet they're not really being utilized

to help kind of bridge this gap for.

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Undiagnosed women or women that have a

very big significant delay in diagnosis.

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So any thoughts, and if you

don't, that's totally okay.

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But any thoughts on why this portal

or this access to this universal.

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Tool.

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It's become so hard for

this particular topic.

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Any, any thoughts on that?

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I don't, I don't know if we've

even tried to centralize sort

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of this kind of an access.

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I just know that when I use resources

and one of my resources that I use, I

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don't want to name it because I don't

think we should be plugging resources

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on, but there's a very trusted resource

that many healthcare professionals use.

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And it's one stop shop.

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Really we can Google, you

can do this, you can do that.

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But when you go to this specific

one, you know that it is high caliber

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information and, it is very trustworthy.

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And so when you, if the

provider isn't going.

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To your app, then maybe place your

app where the provider would go.

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That's the way I see it.

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If you're not getting uptake from

wonderful resource that you have, then

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make your resource place it in a place

where a provider would go where they

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would see it, you know, as opposed to

waiting for that provider to come to you.

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And that's the way I think it's the

angle and the strategy of how we do it.

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you kind of have to jump into a Primary

care providers head, the amount of time

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a person has at the patient's bedside,

or when they come into office, the time

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factor, the engagement factor, the amount

of the kind of appointment that the

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person is going for all of those things

are really important to factor in and.

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I was on a webinar, a CME, actually,

and it was on actually, I think I

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talked to you about this, Natalie, it

was about bleeding, abnormal bleeding.

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And I thought, oh, this will be great.

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Yes, there was and it wasn't what I was.

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I thought it was a preventive thing

is actually across the country.

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So there was not a opportunity to ask

and get more specific questions about.

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You know, certain things, but I

thought, okay, now we're getting into

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the reasons for abnormal bleeding.

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And I was like sitting on the edge of

my seat and the presenter was excellent.

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He was a hematologist.

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He mentioned bleeding

disorders for just one second.

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Like, it was hardly even a mention.

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It was at the end and it was

like all of the other things

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that cause abnormal bleeding.

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And then, and then bleeding

disorders should be ruled out.

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Next slide.

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You know what I mean?

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That was it., if hematology is giving

bleeding disorders such a small

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piece or a small, you know, focus.

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So how do we expect primary care

providers to give it anymore?

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You know what I mean?

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Right.

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It just led me to the thought of

like, You know, why is that happening?

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Why is, why is our bleeding

disorders being talked about?

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Am I just got my bleeding

disorders eyeballs on all the time?

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And that anything that seems

bleeding to me needs to be like,

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okay, is that a bleeding disorder?

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You know, so I might be heightened

in my sort of reception of

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information because of my experience.

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And, but I run into this.

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All the time, and then

I tell you the truth.

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I don't have an answer.

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Natalie.

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I really, really don't

have an answer, right?

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That's what I say.

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If they're not coming to us and we

must go to them, you know, and place

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this in a, in a, algorithm, like,

you know, how many algorithms are

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out there Natalie for how to manage.

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Any condition where you

start like you see a symptom.

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This is what is a yes or no.

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You go.

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Yes, you go this way.

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No, there's you go this way.

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So somewhere in the algorithm, we

could place a if you see bleeding,

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make sure you delve into this.

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Here is a resource.

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Find out where that and place ourselves

into these into certain evidence

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based algorithms where we're actually

going to be Our resource or our

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guidance will be, will be used and

the uptake will be right in, because

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that's where they go to search.

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They go to search to find out

what to do, and that's where the

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learning happens at that moment.

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It's like a point of care learning

providers only have time for.

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So you make a really interesting

point, Wendy, when you say, you

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know, you're heightened, you're

aware, you you are in it, you know.

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So when you have patients come

in and you hear things, you're

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peaked, you know what to look for.

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But you also have acknowledged that

lots of primary care providers don't.

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And you brought up that webinar

where, you know, if you're giving

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one little bit of attention.

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To bleeding disorders, and

you're just going right by it.

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Like, how, how are we going to

expect everybody like all primary

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care providers to do that?

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So what would you do?

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You have any suggestions

for patients that might.

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go in to their primary care provider,

but their prime, let's say their

313

primary care provider isn't as well

versed on this topic as you are.

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Do you have any suggestions for the

patients how they might advocate

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for themselves if they have bleeding

concerns or if they maybe think,

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hey, I, I don't know any different,

but my period seems really heavy

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or it's impacting my life, right?

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Do you have any suggestions how they would

advocate to their primary care provider?

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I think what really, really helps

is, and this is going to sound really

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quite simple, if a person is going

in for a specific reason, And the

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provider has no clue of why they're

being seen, you say, check up.

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Okay.

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And this makes a difference.

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You go in and say, I'm going to

have a checkup with the doctor.

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You don't want to tell the

reception what you're going in for.

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If the person says, I'm

having heavy mental bleeding.

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Tell the reception tell whoever saying

it's about bleeding then it already

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hones that provider into all the

steps because it's amazing how much a

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provider will do beforehand when they

see a patient coming in and going.

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Oh, this is a pack.

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Oh, this is a.

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complete.

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Oh, this is this.

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Oh, this and they they size up their day.

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They know what they're going to go.

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And if they say someone coming in

with abnormal bleeding, okay, they're

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already thinking all the things

that they're going to be seeing and

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what they might hear and whatever.

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So they're already prepping themselves

mentally for what's going to be happening.

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The person comes in and that person

with abnormal bleeding has booked

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themselves in and it's a checkup.

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That could be anything.

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And then anything could be like,

okay, can you tell me why you're here?

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And then it's, it's,

and I'm not saying that.

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That a patient has the has

responsibility to make their physicians

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or their NPS days a better day.

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Okay, that's not their responsibility,

but if you're going to work the system,

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make sure that you're placed well, don't

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bring up bleeding as your last resort.

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thing.

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B, if it's important to you, make

that your visit and make it sure

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that you're telling the physician

beforehand that is what you're here for.

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And you might get a better sort of

openness to what you're hearing.

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Then they'll hone right

in to the bleeding.

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Right.

356

If you're, if you have, I would say to any

patient, if they have Abnormal bleeding.

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Everybody Googles, right?

358

Everybody checks out what's, you know,

and nobody wants to hear, well, I, when

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I did my research, well, that's the, that

almost puts people in a, in an irritation.

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Like providers in an irritation.

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What research are you talking about?

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Because you, you searched it on Google,

that is not called research, but whatever.

363

But it's an irritate, and it'll

be a resistance sort of thing.

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Okay, the person comes with all

this, but you say, you know what?

365

I have a period app.

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Or even using any of the resources

that if they If they came in with

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bleeding, have them look at the

tool, use the tool first, and then

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present the tool and to that provider.

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Do you know how wonderful it is when

I hear a woman come in and say, I have

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a tool on my, you have a period too?

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I am so happy to hear, because it is.

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The, the history that we have to get from

somebody's memory is really difficult.

373

It is so difficult for them to remember

when their period was, how long it

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lasted, what was their, you know, heavy

flow, was it, was it pain, like nothing.

375

But if I, and then at the end, if I do

have that struggle with trying to get that

376

information, I say, hey, you know what,

there are these apps that you can use.

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You have your phone.

378

Let me show you.

379

Try this one out.

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This is the one I have.

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This is a great one.

382

You know what I mean, whatever it is,

and then I can help them point them out.

383

So it's, it's really, really,

um, it sounds, it sounds like

384

these are the semantics of an

appointment with your physician,

385

but you want to optimize your time.

386

As much as you can.

387

You don't want to waste time.

388

You want to get right

to the heart of things.

389

What's what's going on?

390

Be prepared yourself to

be asked these questions.

391

Know the questions yourself

so that you can give the best.

392

And I really, really feel having the

resource beforehand that even if your

393

provider is not aware of the resource,

they will be so welcoming to know

394

that you've got yourself organized and

you can answer their questions and be

395

really well good with your history.

396

That's Going to put you way ahead and

be a better advocate for yourself.

397

That's a really a really great point.

398

And I think I will take the opportunity

to anyone who's listening just

399

to point out that if you go to

Haemophilia Ontario's website, HeroX.

400

ca, so H E R O I X X dot C A, on the home

page, you will actually see a tool that

401

does measure bleeding called Self batt,

and that's on the homepage of hero x.ca.

402

Or you could go directly to let's talk

period.ca and the self batt is on the

403

homepage of either of those websites.

404

And that really is a good

point, Wendy, because that is

405

a tool that actually takes.

406

like two to three minutes to just fill

in and it gives you a score that you

407

could actually take into your primary

care provider and say, Hey, this

408

is, this is what I got as a score.

409

Can we talk about this?

410

So I, I really liked that

point about going in with, all

411

right, this is what I've done.

412

This is what I know.

413

Can we kind of talk about this

and kind of giving them a heads up

414

about what you're coming in for.

415

So thank you for those suggestions.

416

Anything else you want

to share with us today?

417

This has been really informative to

me because I think both informative

418

as from the patient perspective,

but also really informative from an

419

organizational side of things, even as

myself as a staff of hemophilia Ontario.

420

So I found this really, really great.

421

So is there anything else

you want to share today?

422

Yes, you know Natalie, I think, I, I

think when we first talked in at, at, at

423

our our rendezvous and at the wonderful

presentation on our women and bleeding

424

disorders session that we had there,

what really hit me hard was there was so

425

much there was just, just a hunger for

information and a need for for service.

426

I found myself wearing two hats, um,

at all times, I found myself being

427

that I have the ability to read.

428

I have the ability to resource

my patients with with all of the

429

information I'm, I'm getting here.

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I'm also in this leadership

role with CHS that I have the

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ability to advocate for, for.

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Bleed women who bleed that are are

still not diagnosed properly and

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and work as a within our mission.

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At CHS to make sure that we are

capturing our data and capturing

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our women who are out there.

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So there's so many facets of how of

of of just in me and I thought thank

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goodness that that I did jump into

this and I just see this as service

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but I'm going here's me with with with.

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That's happened to be a nurse

practitioner and happened to have

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a son with severe hemophilia.

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What a great combination because

now I've been able to sort of put

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myself, in a situation where I could.

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Really, really be beneficial

both my son and to the community.

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But what I want to tell everybody is you

don't have to be a nurse practitioner.

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You don't have to be

somebody on the board.

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You said this Natalie in the beginning or

have, you know, a lot of that experience.

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You just have to believe in the cause.

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You have to believe in something that

is really, really important to you.

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And you don't give up.

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And then all of a sudden, the pieces

will fall into place and the advocacy

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will come from such a deep level that

you could move mountains and you may

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be a nurse practitioner, you may be a a

business person, you may be a person that

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is really, really good with, working with

customers service areas, you have skills,

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you have certain traits that really fit

into the passion that you are behind.

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Then you take those skills and you just

apply it to your passion and then you go

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forward and with your best foot forward.

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And that's what makes.

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An organization great.

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Okay.

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It's not, it's not anything.

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It's about people who believe in

the mission and they have a passion

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and they're willing to learn and

they're willing to bring their best

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selves and their best skills and

their best traits forward to fill the

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need of that organization's mission.

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We need you is the message.

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Oh, thank you so much, Wendy.

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It's been such a pleasure having

you on this podcast today and

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doing this episode with me.

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I feel like I've learned so much

and very, very inspirational.

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So I just want to say a really big

thank you for being here today.

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Natalie, I am so honored that you even

considered having me on your podcast.

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, I love speaking of, the work that

we do in CHS, but I also love to

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share the journey and give people

hope that, that, you know, things

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are getting better and life is not.

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It's dismal and we've got so

much on the horizon right now.

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So having the opportunity to share this

with you today and, and share my story

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and hopefully inspire others to follow

their, their personal journeys and make

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a positive out of whatever they can.

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Well said.

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Thank you.