How is your clinic run?

[JustaCFmom]

(car)
I arrived at our clinic at 9 am and left at 2 pm. This is actually pretty unusual, but I want to know how your clinic works.

Here, no one has an appt. and people show up when they show up. Usually, between 9-10 more or less. So, it is basically chaos. There is a waiting room and a play room for the kids and it is far from ideal for a CF clinic.
The other factor is that people are coming for non-routine CF stuff and just lung problems needing tests and diagnosis.

I am grateful that they do want to improve and there is who to talk to. Now, I am researching how clinics are run elsewhere.

Thanks! (car)

 

[eliqueang]

that reminds me of my old clinic back when i was in pediatrics! I would say clinic here is run pretty good. It's cf and non cf. But the cfers always have an appointment. Sometimes i get squeezed in if i'm in need to see the doc. He will never turn you down, one time he skipped lunch and i felt so bad. Anyways..i'd say a good smooth clinic day would be about an hour. If its chaos with squeezers, it could be longer. They keep a list of everyone you need to see on the door and each checks it as they go. Oh and i have never seen another cf patient when i walk in the waiting room. They take us right away so we're not "exposed" but its fun when you can basically play morse code by coughing in the rooms (FART2) and i just realized that's a fart...owell that works as well.

 

[Printer]

I go at an appointed time. I check in at the front desk and an immediately taken to an exam room. I will remain in that room until my appointment is completed. PFT's. blood work etc are done in this room. The Doctor also comes into this room. Everyone coming in the room observes "contact precautions" (gown and gloves). If I need to go for x-rays, that room is "prepared" before I leave the CF Clinic.

The exam room is very spartan, no magazines, newspapers or pamphlets.

You should expect nothing less on the part of your clinic. It is your health that needs to be protected.

Bill

 

[Ratatosk]

That's exactly how our local cf clinic was run, except they'd have appointment scheduled. Overcrowded waiting room, toys/play area... Because DS was a baby, we were assigned our own room, but everyone else went from room to room to meet with the doctor's, RT, dietician, social worker... Everyone tromped down to the PFT lab, xray and lab. They made a day of it. We still had to wait in the waiting room until a room was available. We were there for several hours. The final straw was when ds was 2 and they wanted us to trade rooms with with a child who was obviously very sick -- fever, productive cough -- without cleaning the room first. The nurse told us to switch. I refused and we basically cooled our heels in our exam room for 1.5 hours When we complained, they told us they didn't have enough rooms for everyone to have their own and besides no one had ever cultured cepacia at their clinic, which know wasn't true as I knew of at least one.

So ds goes to a pediatrician at the local clinic who is also head of the CF program and primary CF care is in the city -- 250 miles away. We check in, there's rarely anyone in the waiting room, we're assigned a room and we're out in a timely fashion. Labs are done at our local clinic and with results sent to the City. We go to the children's hospital in the City once a year for xrays or scans and carry the films/cd with us to the cf appointment an hour later across town.

 

[JENNYC]

We have an appointment...and if she is culturing something from before (MRSA, Psuedo, ect) we get put right in a room, if not we sit in the non crowded waiting room with a mask for at the most 10 minutes...then we go to do PFT's and then get sat in a room where everyone comes to us. The whole process is usually an hour. Everyone that comes in gowns up and uses hand sanitizer.

 

[JennyCoulon]

We have appointment times and they normally do a 1 hour block so the boys can go together. We check in and get a buzzer that will light up when they are ready. There is a whole huge waiting room so we go and sit by ourselves until our buzzer goes off which usually is within 5-10 mins. We go back and they get weighed, O2 checked and height and then we are off to the room.

Once we are in there the nurse goes over meds, problems, changes, etc. Once she is done the dietician comes in and we go over their weight and g-button feeds, enzymes, etc. While she is in there then the dr. will come in and she will go over everything also, she will then listen to them, check their tummy's, ask them questions directly. They then take turns going into the PFT room and doing those as well as getting swabbed if they can't cough anything up. Our appointments usually last about 1-1 1/2 hours depending on how busy the clinic is.

We have it set up where they both get their annual labs and x-rays done at the same time in the Fall so that visit is usually about 2 hours since it seems the x-ray clinic is never in a hurry. We tell them not to touch anything and we use hand sanitizer while we are there. We don't wear masks and we are careful but not overly. You can't make your child live in a bubble so we do what we can. Our clinic is also an ENT so there are kids coming in for all other kinds of things also but like I said we stay to ourselves.

 

[JustaCFmom]

Thanks for your input!
The appointments are from 8am to 4pm? Like you (and 3 more people?) will be told 8 , another 4 from 9 -10, etc? Or someone gets 8:15, then 8:30 every 15 minutes? Is it quite punctual, or is there a lot of variation? How do you occupy kids in the same room for an hour+?

 

[Ratatosk]

At our old CF clinic, knowing we'd be there from 7:45-2 -- we'd bring a separate bag with books, puzzles, toys, portable dvd player with dvds. Also brought books/magazines for ourselves, snacks, juice, babyfood, formula & bottled water. Still didn't prevent ds from throwing himself against the door in frustration after being trapped for hours on end. Wanted to do the same thing myself. Nowdays our appointments are much shorter, but we bring along an ipad for games, for reading and watching movies.

 

[Lena Bean]

My old clinic was one that took HOURS. My new one is really prompt even on a bad CF day. Like my average appt. is an hour there, and that's mostly because we talk a lot. When I have to wait to be admitted, of course it's closer to 3 or 4 hours, but hey, it happens.

 

[bigstar]

Here in Greece CF clinics are just departments of hospitals. So in my "clinic' we pretty much have this messy situation @JustaCFmom described. We never get examined on the time of the appointment. I get there at 10 and im always leaving when my doctor does which means 2 or 3pm. The waiting room is small and crowded so i end up waiting on the stairs because i dont want to be exposed to other CF people. At some point the nurse calls my name, i get in, she gets my PFTs , saturation and weight. And then i get out on the waiting room until the doctor sees me. My Cf team is excellent, very committed, understanding and extremely hard working. My only complaint at the end of the day is that i dont get to talk to my doctor a lot. I usually have 15 minutes of her time and that's too little time for me. I wish i had a little more. 25-30 would be great.

 

[Jet]

Ours has scheduled times. Check in and go directly to the exam room. I stay in there except for PFTs. For the most part its pretty orderly. The staffs great. It can still be slow if they have a number of sick patients.

 

[Printer]

I can not believe what I am reading here on this thread.

Bill

 

[bigstar]

Bill if you are reffering to my post, im in the very unfortunate position to tell you that my CF department runs excellently compared to other ones in the country. When i was seeing another doctor (15 years ago) -it was of course in a city 5 hours away than mine- and they made us collect our own test results. For example if you'd have a blood sample taken today, you should go back a week later, collect the results and keep them till your next appointment. Same with x rays and all others. It was like my parents should have just quit their jobs, move to another city and start doing the hospital staff's job, collecting test results all day. We are talking about a complete madness. The same doctors dont allow home IVs till today. Not allowing home Ivs but giving the patient the option to do it in a fully equipped CF wing is one thing. But they make you run Ivs in a hospital room for 15 days with all the risks involved when you are hospitalized in a regular clinic with all sorts of other patients. To me this is suicide. Unfortunately there are many steps that need to be made regarding CF care in Greece because we might be lucky enough to have some good and trained doctors but the paperwork and the lack of facilities are terrible. And the economic crisis is not helping at all. Thank you all for listening.

 

[bloggymom]

At my clinic I sit in the large waiting room until a tech comes to get you (anywhere from 30 min- 1 hour). Then I do your PFT's with a tech. Then if there is a room available they will take us back to a room. I then am taken to the room. We wait for 30-45 minutes for a nurse and then after that we wait another 30-40 minutes for the doc to come in. We then wait to see nutrition and possibly respiratory. If I pay an extra copay then I can visit with the diabetes doc. I usually contact her via email rather than paying the extra copay. Most clinic appointments take 2-3 hours... longer if I have a chest x-ray.

 

[Ratatosk]

I can not believe what I am reading here on this thread.

Bill

And our local CF clinic is accreditted. Scary! And from what I understand from other people who still go there, it's still run the same way, which is why most of us travel 250 miles away to CF clinics in the City. I can drive to the city, get ds a lung scan at Children's hospital, go see his CF doctor at another site and then his ENT at yet another clinic in the time it takes to get thru the chaos at the local CF center.

And not sure if this is still the case, but 8 years ago, when a friend of mine's daughter was diagnosed, they went to U of MN, which at the time was considered to be one of the top clinics in the nation. And her grandmother indicated they had a playroom with toys in the waiting room and nobody had mentioned to them that people wcf should keep their distance.

 

[Printer]

I was talking about the possibility of cross contamination that is virtually forced upon you sitting in the waiting room.

Bill

 

[Ratatosk]

Exactly, Bill! And when we questioned it, they implied we were hysterical and overprotective. Fortunately, we were able to keep DS in his carseat with a blanket over him for the most part, but as he got older and more mobile --- we once walked out of the clinic after cooling our heels in the overcrowded waiting room for over an hour. Actually, DH waited in the hall with DS and we finally said we were leaving and why.

 

[hammerpocket]

What I describe below is an adult CF clinic. The pediatric CF clinic is completely separate so I can't comment on that.

I have a PFT appointment that is usually 20-30 minutes before the scheduled clinic appointment. I check in, get some forms to fill out and a sputum sample cup, then go to the PFT lab. There is no wait at the PFT lab. After PFTs, I go to the clinic desk to let them know I'm back and hand them the sputum sample. I usually sit in the waiting room for no more than 10 minutes before being called in. (There are lots of people around, but as this clinic is not exclusively CF, I don't know how many other people with CF are there at the same time. I don't wear a mask, although I think they are available.) A nurse takes my blood pressure and temp (O2 and weight are done with PFTs) before putting me into an exam room, where we go through some routine questions. After the nurse leaves, the doctor is usually in the room within 10 minutes if not immediately. The time with the doctor is not rushed. I may also see the dietician, social worker, and/or respiratory therapist. No one wears gowns or gloves, but the doctor washes hands (and maybe puts on gloves?) before physically examining me.

Overall, the appointment takes a couple of hours, but not much of it is just sitting and waiting. That is in contrast to my former clinic, where I felt like I was waiting for 80% of the time.

 

[Printer]

Somehow I think that the CFF has a protocol on the operation of a Approved CF Clinic. It would be interesting if someone would take the time and effort to check that out.

Bill

 

[Simba15]

(car)
I arrived at our clinic at 9 am and left at 2 pm. This is actually pretty unusual, but I want to know how your clinic works.

Here, no one has an appt. and people show up when they show up. Usually, between 9-10 more or less. So, it is basically chaos. There is a waiting room and a play room for the kids and it is far from ideal for a CF clinic.
The other factor is that people are coming for non-routine CF stuff and just lung problems needing tests and diagnosis.

I am grateful that they do want to improve and there is who to talk to. Now, I am researching how clinics are run elsewhere.

Thanks! (car)

I went to the clinic for the first time. I was there for 4 hours. No idea if it is always like that, how often i am supposed to go or if I make an appt or just walk in. Have to check.