September 8, 2020 at 12:35 pm #15571Jenny LivingstonKeymaster
I recently read (in a Facebook group I belong to) that a woman was dissatisfied with her CF center, so she was actively “shopping around.”
I’ve been with my CF team for my entire adult life, and truly, I’ve never had the desire to look elsewhere. In addition to that, my CF center is the only accredited center with a several hour drive from my home (it’s about 2.5 hours to drive one way). I suppose I’ve been lucky to be so satisfied with my care that I’ve never felt the need to shop around.
What about you? Have you received care from multiple CF teams either by choice or necessity (ie: moving out of state). If you’ve “shopped around” in the past, how did you know when you found the right team? What has your experience been with care at different centers?
September 12, 2020 at 10:56 am #15594Paul met DebbieParticipant
The Netherlands is a small country and yet there are 7 cf-centers. Wherever you go, you can always reach one within a 2 hours’ drive or less by car. So in that respect there is a lot of choice. I could choose between 5 centers from where I live within that distance.
But as things go, one tends to visit the closest center to minimize travel effort. Also, in case of a hospital stay, it is easier for my loved-ones if the hospital is nearby.
There was a time that I did not want to be in such dedicated cf center because of infection risk. This was before cross-infection and segregation was an issue officially, but it was for me. So I choose a pulmonologist in an academic hospital that was not an official cf center, who was specialized in cf nonetheless. I did not run the risk of bumping into another cf patient there. And it was even closer to my home and work (a 20 minutes’ walk). Mostly I only need a pulmonologist. For my sinus problems I found a specialist in another smaller hospital nearby, who invented a special surgical technique for that which allowed me to be operated on without general anesthesia.
Nowadays after moving to another area of the country I do visit a cf center that is nearby (half an hour’s drive), because nowadays segregation is common practice and not an issue anymore. I feel taken care of reasonably well, although that might of course change in time. Doctors and nurses come and go. I don’t like changing my specialist so when my last pulmonologist left the center for a better job in Germany, I did not like that at first. Fortunately, communication mostly takes place through the nurse practitioner who is still the same. And my new pulmonologist is a good guy also, communicative and sympathetic.
I think the idea of a cf center is good in principle, it could lead to more expertise especially in a larger center. On the other hand, in practice it sounds better than it is, because as soon as one needs specialist care other than from your own pulmonologist, specialists still tend to reside on their own little islands even in the same cf center or cf team. Cooperation and communication could still be vastly improved.
September 14, 2020 at 9:23 pm #15597Jenny LivingstonKeymaster
Paul, this is fascinating to me. I have friends here in the U.S. who choose to see specialists independent of CF centers for reasons similar to the ones you mentioned here. Again, it’s not something I can imagine since I’ve been so pleased with my care team and feel so well taken care of. Thank you for sharing a bit about your experiences.
I’m curious, in the Netherlands, what constitutes a “CF team” if there is such a thing? At my center, the core members of the multidisciplinary care team include doctors (as well as APRNs and PAs), nurse coordinators, respiratory therapists, social workers, pharmacists and pharmacy technicians, and dieticians. I might be forgetting some….
Do they have similar teams of care providers at designated CF centers in the Netherlands?
September 19, 2020 at 9:49 am #15628Paul met DebbieParticipant
Yes Jenny, I think the situation is comparable here. A hospital can dedicate some members of its staff to cf care and form a cf team. Since a couple of years the NCFS, dutch cf patient organisation, regularly “tests” those teams and if they pass the visitation, they get an official quality mark of “cf center”.
In most cf-centers there is a division between the care for the underaged and for the adults, organized in two teams.
In large centers with lots of cf patients, I guess some specialists of the cf team will dedicate a substantial part of their time to cf patients only. My cf center however is relatively small, I think there are only 80 cf patients. So most members of the team (except the nurse-practioners) will “do” cf only “on the side” I presume.
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