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    • #14120
      Jenny Livingston

      “The CF patient population, in general, doesn’t extend their trust very easily.”

      Someone said this to me during my recent hospitalization, and it’s a concept that I keep coming back to. This person is fairly new to working with the CF community and said that they keep “running into brick walls” when it comes to making headway with some of the patients.

      Honestly, this isn’t the first time I’ve heard this from someone in a healthcare setting. I’ve had similar discussions with social workers, nurses, and my ENT. Trust is a concept that is vital in a healthcare setting, but it can be incredibly difficult to build and maintain.

      I’ve been with my current CF team for nearly 15 years. Our relationships and bonds are well established. To say I trust them would be the understatement of the century! But it wasn’t always that way. Like any relationship, all involved parties had to learn to actively participate, communicate openly, and compromise (even when we didn’t necessarily want to).

      It’s taken years to build the kind of relationship I have with my team. When meeting a new doctor, undergoing a new procedure, or welcoming someone new to the CF team, it can take a while to extend that trust…. which only makes sense! These are our bodies, our lives, our biggest priorities. We spend every single day managing this disease and taking care of our health. Letting someone be part of that or (even more difficult) letting them call the shots can be terrifying!

      It’s also important to remember that trust is a two-way street. Not only is it imperative that we trust our healthcare providers, they must also be able to trust us.

      What are your thoughts on patient-provider trust? Aside from time and shared experiences, what do you think it takes to build that trust? 

    • #14136
      Bailey Vincent

      I definitely have had full trust in doctors before and then been disappointed when they dropped the ball… but have also had powerful, positive physician experiences too.

      This week, I was frustrated because I trusted one of my doctors to help me write an RX for new feed supplies to a new home health company. I’ve gone back multiple times in person, we discuss it… and then nothing. I finally called the home health care company to see if they had heard from the office, and they hadn’t. I was so discouraged. I’m losing weight and need feed supplies… but I feel so powerless! Luckily, the home health employee got super frustrated for me and called my doctors office and pushed them. And, it worked!

      I’m so grateful they did that for me, but get so disheartened that it can takes weeks and months to get something so critical done, and that my own voice often means so little. And that, even as someone who generally trusts too many people… makes trust HARD

    • #14139
      Kadeem M

      This is very well thought out and written.

      I found throughout my paediatric care (age 0-18), it was a lot easier to develop a sense of trust with my healthcare team regarding my overall health. Main factor being that since i was a minor, for majority of the years my parents would be making my medical decisions, and they never ever disagreed with my CF team. So, for me the trust came naturally. I found myself questioning the levels of “trust” with my CF team when I 1. Transferred to adult care 2. When I became a transplant patient. Two very new sets of CF teams, but luckily there was always at least one familiar face that stayed consistent throughout each transition.
      Nonetheless, i still was able to build a significant amount of trust with my new teams, as i understood that it wasn’t their ideal interest in seeing a patient of theirs dead, so they would do anything and everything humanly, and scientifically possible to keep me alive and fighting. As so they did.

      ~Kadeem M.

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