Melissa Winger
speaker
81 appearances
1 recordings
1 series
first heard Aug 2023
last heard Aug 2023
Melissa Winger’s voice in public audio — every appearance, attributed to the second.
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Appearances
Thank you so much. I am thrilled to be part of this podcast. It's a wonderful show, so I am honored to be on it. And yeah, just to start, I am not an author, not a writer. I don't know anything about publishing, but this was a story I needed to tell. And so that's when I took the journey on what it's like for the patient. And it is something that I have looked for on bookshelves for decades.
and couldn't find it. I couldn't find it from the patient's perspective. And so that's why I'm like, I guess I have to write it. So I had to learn all about how to write, how to publish a book. And here we are, but it took about four years to get here.
Yeah, I think it is. So I have a son who's now 27, who has medical complexities. And so that is why I am a patient advocate or patient parent representative or whatever the term is. Consumer, I think we're called at some point. And I realized that over the time that it isn't like other industries where the consumer voice is present in everything.
And that's like other industries where you're purchasing products or services, healthcare is much different. And it's almost like the patient has to force themselves into the conversation. And it's a little backwards from other industries. And so that's what I've been doing for 10 plus years is
Anybody that wanted the patient experience, the patient representative, the patient at the table, whether it was to fill a checkbox, because sometimes you have to have, you know, according to some accreditation, you have to have a patient parent representative. And maybe that it was to check the box. But either way, I thought I could put this in a book.
And so when there isn't a patient at the table, the message is still out there.
That was actually, it's an interesting story because I was a, Teen mom, even though I hate using that word, I haven't found a better one. But being a young mom and having a son in the hospital a lot for various issues, he's missing the bottom of his fourth chromosome. So every organ system was affected in some way.
And I just saw a flyer in the elevator for recruiting parents for the family advisory board at the hospital. And so I thought, sitting here day after day after day. I have a lot of experience. I'm just going to fill out an application.
And I remember at the bottom of the application thing that they require diversity on the groups to make sure that the entire population is represented on this board. And the only thing that I could think of, and I wrote it in big letters was I am 19. And then I sent it off and I thought, who is going to want a 19 year old board and I was accepted.
And then a couple years later, I was the chairperson. And as the chairperson, I get voted on again. And that sort of gave me that fire of I could see what I could do. You know, when you were able to have viewpoints on how the furniture was organized in a patient room or how their website was designed. And so I started seeing the benefits that I could provide.
And then I just have been unstoppable, I guess, being that everybody that wanted a patient and I was approached, I just said, yes, yes, yes, of course.
I agree. And I took a spin on that in the book because we use this concept of patient-centered And it's hard for me to understand what that means. And it's almost like a fluff word, so to speak. It's this, you are told you're at the center, but in reality, what does that mean? And it's true. And I love, love the airline analogy because it is true.
You are still to this day giving up all your control. And the way I always looked at it was, you know,
literally handing my baby over for someone to put a knife to them like it was so right right that's not natural to a mother right I'm supposed to protect him I'm supposed to keep him from harm even though in the back of your head you know right that that it is needed for their health or their well-being but it's that concept of of handing your your baby over in that scenario that it's terrifying I'm
And it never got easier. My son is 27 and I have to walk him back to surgery and I feel the same as I did when he was four months old. And that's why I took a different spin on the book to say, you are told over and over to be an advocate and you have to fight and stand up. And I'm like, why, why? We are at our worst. We are sick. We are weak. And now we're saying, nope, get up. Be alert.
Watch what's going on. Be involved. And it's like, how? When you're at the worst part of your life.
And vulnerable.
Yeah, I agree. And one of the things that I think I came across when writing this book. I added a ton of research to it as well because my experience is just my experience. And so I wanted to capture the entire picture is when they surveyed nursing staff and how many of them would not recommend their own hospital to a family member. And I was like, why don't we use that data?
Your own employees.
family members or their own or themselves to the hospital they work at. And they're the ones that know, right? They're the ones that truly know what goes on.
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