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    • #17453
      Bailey Vincent
      Keymaster

      I’m going to rant for a second.

      I know that doctors need to see us in person for a lot of things. I know that there is benefit and merit to appointments that aren’t strictly virtual. But lately, I sort of want to ask: What happened to doctors being more accommodating?

      I have had multiple doctors tell me I can only come in-person now and ‘we can’t schedule a telehealth’, which is fine (sort of? not at all?), but then when I’m recovering from surgeries and can’t easily drive myself long distances, it feels… impossible?

      Knowing that some accommodation was possible over the last year and now seeing it disappear just like that… it feels so disappointing?

      So I’m curious:

      1) Can anyone relate to this feeling right now?

      2) What is your current situation with doctors and telehealth willingness?

    • #17456
      Paul met Debbie
      Participant

      Yes, that would be very disappointing indeed. Apparently, some docs still want to “see” the patient in real life. I think this is a sort of habit they have been trained into. Perhaps it makes them feel more “Doctory”. In letters they sent to their collegues about the patient, they literally say things like: “Yesterday I saw your patient, mr/mrs so and so, …” . Could it be a sort of power-play? The patient being summoned and has to appear at the discretion of the mighty Doc, otherwise no deal? Just to make them feel good? I don’t know. It sounds so old fashioned and not done.

      I don’t deny the need to do some tests, that can’t be all done at home, so you can’t always escape some hospital visits (although many tests can be done at local hospitals or even by the GP, not always necessary to visit the cf center for that).

      But this “seeing” to discuss the outcomes of those tests, to visit the docs little cubicle and look him/her in the eye (masked, so the rest of the face is hidden anyway) – to play the ancient roles in this little theater, white coat and all – I don’t really get why this is so important to them. If the patient wants it, okay, but if not, why should he be forced to this? Hours of driving in the car, hospital corridors, waiting rooms, to just meet them for 10 minutes, discussing the obvious … why? What does it add to the equation? It is just not sustainable anymore (was it ever?). The time that they actually touched me with a stethoscope or did any physical exam on me, is way in the prehistoric age anyway. As said, it must be some old conditioning. To me, these talks can equally well and much more comfortably be done by telehealth, be it email, phone, or whatever technical interface is used.

      It would be very unfortunate if the extra willingness and possibilities for telehealth that appeared thanks to covid, would now be lost or diminished again. I will certainly not comply to that if I can avoid it, fortunately my cf center still seems to accommodate my tele-wishes so far.

    • #17461
      Jenny Livingston
      Keymaster

      Oh, this is so frustrating! Throughout this pandemic, it’s been interesting to see how quickly accommodations have been made in healthcare, the workplace, and school. Given how difficult it’s been for the disabled and chronically ill communities to receive accommodations, they sure happened quickly when COVID made them necessary. I’ve viewed these accessibility improvements as one of the few silver linings of this pandemic and I will be so upset if they all just fade away.

      I’m sorry to hear you’re experiencing this, Bailey. I haven’t run into the same issue yet, but I truly hope that telehealth will remain an option for us all moving forward.

    • #17463
      W. Hoh
      Participant

      CFF.org lists the care center data for various cf are centers. They list the Guidelines for care (for pediatric patients) as
      “percentage of children less than 18 years of age who have had at least four clinic visits, two lung function tests, and a sputum or throat culture. ”

      In order to accomplish this in a high enough percentage of patients to maintain a high-level ranking, they must see you in a CF clinic in person.

      That’s is part of the reason why, and it is wrong.

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