new clinic-I do not like-anyone else go to UW Seattle?

[franzie2984]

I recently began going to the UW Seattle clinic and I really dislike it. I could go on and on but besides the lack of infection control protocol they also get my cultures wrong (wrote pseudomonas in my file until I ask the doctor point blank to double check and then they realize I'm right but probably haven't changed my file)- whoopsy, they forgot to let me know what I cultured the first time I was there so they treated me with the wrong antibiotics- they are difficult to contact, don't give me my results, won't use email....have flat out contradicted me until I insist they double check (regarding a lung function decline that they denied but I know my previous PFTs back up)-The response to this was "okay, I'll give you that." Then to follow up she said "not to worry there is a new drug coming out in April".... Really-that is your care response? I just really dislike the standard of care there. Anyone else have any input on this clinic? sorry if this sounds like a rant-once I started typing it just came out this way! Thanks!

 

[jbrandyn]

With the exception of my current exile to St. Louis for grad school I have always been at UW. Sounds like normal new patient frustration, most new patients have it when going to a new place,, I had it when I move out here. It will get better. Do feel free to tell them your concerns, they will not hold it against you.

They do have quite good infection control and were implementing what are the current CFF guidelines at least two years before they were suggested by the CFF, however you usually cannot tell because they schedule patients differently if they have one of the more aggressive bugs. Their rate of hospital/clinic acquired infection is low.

As well UW uses a palliative treatment modality which the literature suggests will be better for patient outcomes (the research is underway now and UW is a research site, but it is a longitudinal study so there is going to be at least a 5 year gap before we can see numbers, but research using the palliative modality with other terminal disabilities show significant increase in patient outcomes).

The nurse is kinda flake-y during clinics, but gets stuff done. The entire CF center is very laid back and you impetus tends to be on the patient's expressed wishes. The role of the patient is as an equal member of their care team, so it is good to ask questions. Again though transitional periods for any patient are going to be bumpy, it will smooth out. Be open with your concerns and needs and they will remember them integrate them into how you are treated as a patient member of your care team.

If you have any concerns the social worker is quite good and will help the center provide you with the care you want, she usually calls back within a day. The nurse also gets back within a day and she is very understanding about what your needs are.

I would also suggest utilizing the ecare website it is quite a helpful tool. The hospital policy is to use the ecare website rather than email so that contacts are recorded in your chart then followed up on and for security purposes.

Hope your experience improves.

 

[franzie2984]

Thank you for taking the time to respond so thoroughly-I really appreciate it. Your feedback and suggestions are helpful too. I have changed clinics before; 2 great clinics, 1 not so great clinic, and now UW-So I am familiar with the transition.

It might just be their laid back approach I am not used to. Typical West coast. ;-). I will incorporate your feedback though (especially with the ecare website), thanks!