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Volunteer Advocate
cf insights cf insights

Dear Hospital Staff

If there’s one thing CFers are experts on, its hospital stays.  If you could write an open letter to your hospital’s staff to make your stay easier, what would you say?

  • “First and foremost, I’d like them to know that I know my disease and my medical care routine better than anyone. It’s always such a relief when nurses and doctors ask me what I need in order to stick to my CF routine while in hospital instead of me trying to adapt to the hospital routine. Secondly, infection control is incredibly important so I always ask (kindly of course) that hospital personnel please remember to wash their hands before entering my hospital room. Thirdly, sleep is essential in maintaining my health, so being woken up early in the morning when it’s not absolutely necessary can get frustrating. Especially after a restless night of listening to call bells, hall doors opening and closing, nurses needing to come in to administer IV medications or lab techs collecting time sensitive blood work in the middle of the night, or sleeping with what seems like endless tubing attached to you. A good night’s sleep is so important when you’re trying to get well, yet trying to get a good night’s sleep in a hospital is nearly impossible. Having hospital personnel recognize that is incredibly helpful. Even just being validated is helpful.” – Kim Wood
  • “While it’s great that staff who are used to CF patients tend to give us a bit more space and control over our care than some other patients, I would caution against just ignoring us completely except for delivering medications. I know that other patients might need more acute care than I do, but boredom in the hospital is a very real challenge, so having someone come in occasionally to check in when possible is a welcome change.” – Terra Stephenson
  • “Be as thoughtful as you can be because myself I don’t always like being treated as if I’m terminally ill and appreciate conversation.” – Nicholas Evans
  • “I feel like I could write an essay on this! But to keep it short; respect that the room I’m in is my only privacy so knocking before you enter is really appreciated, and respecting any signs that I have put on my door like ‘please don’t wake me before 9am ‘.” – Mackenzie Norris
  • “Listen! People who live with Cystic Fibrosis are very in tune with our bodies. We often have already experienced situations and know what has worked and what hasn’t, when we say “that vein is no good.” Going through several rounds of poking only to acknowledge what we have known all along is infuriating. Listen to us, our families, and especially in cases of transplant if we ask for staff to contact our lead team it is not that we doubt your skill or knowledge. But to understand all the complexity of a multi organ disease and the history of an individual is something you have to be immersed in on a regular basis.” – Robert Burch

Have insights you would also like to share? To be quoted in our blog please contact Terra at tgillespie@cysticfibrosis.ca

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