What to do if you don't like your clinic?

[jdeastin]

Just wondering if any of you don't like your current CF clinic. I've moved around a bit in the last several years and am just not happy with my current clinic. I'm not quite sure what to do about it as it's the only one nearby in the area.
Does anyone travel very far to go to a clinic you like? If so does insurance cover it 'out of area'?

I'm considering travelling to Colorado to go back to my old clinic, but not sure if insurance will cover and then there's always the fact that if I have an emergency it would be better to have the clinic I go to nearby.

 

[LittleLab4CF]

A good clinic is relative. I've been going to a CFF accredited clinic for about 15 years and have been helped. As a late diagnosed CFer, I had a number of specialists treating my needs. As I understand it, my clinic has expanded its staff. For pulmonary dominant CF, the clinic draws adults from quite a distance. National Jewish Health (NJH) is a leading respiratory hospital located in Denver Colorado. I know a woman in Dallas that comes to NJH and her insurance does cover her appointments.

Conversely if I don't find an answer to my CF related GI issues soon, I am going to a pancreatic clinic in Boston or Cleveland. My insurance plus Medicare covers the appointment as if I was seeing a local specialist. CF is an Orphan Disease and with 35,000 throughout the U.S., many under pediatric care, our choices are limited.

What disturbs me is the less than glowing reviews by patients like yourself who has experience with more than one clinic. I'd love to be near teaching hospitals where enough adult beds are reserved for CFers to where students and Doctors can see the spectrum of the disease.

When genetically and sweat chloride positive patients with all of the issues of maldigestion and the gamut of GI disorders and the usual head and sinus problems is marginalized for lack of CF lungs by a CF clinic, there's either something wrong with the accreditation process or the Continued Medical Education courses are in need of balanced focus over the spectrum of the disease. I'm not talking about the clinic I go to but at least two adult CFers wrote about a clinic in California that really upset me. I'm tired of noting that CF was first understood as a disease of the pancreas and the GI tract. Pulmonary fibrosis was observed with pancreatic fibrosing but pulmonary dominant CFers didn't leave via the front door of the hospital when I was born in 1950.

I suggest that you contact your local CFF.org to see what else is around. Assuming that you are less than delighted with the local accredited clinic, you might want to make your feelings known.

LL

 

[Ratatosk]

When U of MN with Dr. Warwick was regarded as one of the top cf clinics in the nation I believe there were several individuals on this site who traveled to Minneapolis for a consult from all over the nation -- TX, CA, MO.... And I know there are several who go to Jewish in Denver as well.

When DS diagnosed as a newborn, we'd had 6 weeks experience at an accredited CF facility in the City 250 miles away. He'd been lifeflighted from home to undergo surgery for a bowel obstruction due to meconium ileus. When we returned home we'd heard there was a local cf clinic and started going there; however, the treatment (reactive as opposed to proactive) or lack there of, the tiny shared waiting room and our increasing concerns with cross contamination led us back to the City. We'd usually plan it around a weekend. Leave Friday morning, go to the clinic/hospital and then do some shopping, go to a museum, visit friends. What we found was that it was much quicker and efficient than the local clinic. Drive to the City --- 3 1/2 hours and go to our appointment, we'd be done by shortly after lunch. The local clinic -- we'd arrive at 7:30 and cool our heels in the waiting room until 8-8:30. Then we'd be assigned an exam room where we'd wait --- the last time it was well over an hour and a half before anyone came to see us. They'd cycle thru the pediatric social worker, cf pharmacist, RT, GI doctor, primary cf doctor, pulmonologist --- the latter would NEVER wash his hands and basically told me we didn't need to do CPT and ds didn't need nebulized or other meds until he had symptoms. "Besides great strides were being made in lung transplantation" -- my child was 3 months old and it wasn't like we could go to lungs R us for a new set! Then we'd have labs, xrays and maybe get home before 5 pm.

When DS was 6 he experienced another obstruction and we went to the local er where they advised observation. While we got ds rehydrated with ivs, we called his CF doctor in the City who called us back immediately and told us he'd rather have us at the children's hospital where they had a team of pediatric surgeons as opposed to our hospital which had only one. So we hit the road early the next morning.

We have friends locally who also attend one of the two cf clinics in the City. Their children's health has improved, there is less stress, there are more options in terms of clinical studies.... With our clinic in the City, we're just a phone call away. I'm still waiting for the local CF Doc to call me back when there was a whooping cough case at DS' daycare in 2005. We called them first, then our doctor in the City and had a script for a prophylactic antibiotic waiting for us at the pharmacy the next morning.

 

[kenna2]

Living in Ohio, I'm fortunate that we have many amazing and some of the top CF clinics here. I wasn't unhappy with my first CF clinic but I wanted to go to another one for a second opinion in Cleveland at University Hospital and am still very happy. I do live closer to my first CF clinic. I know many people from out of state come here for treatment. Many of the doctors usually at some point have ended up at Cleveland Clinic working with pre and post transplant patients as well. It's nice because we have familiar faces wherever we choose go who know our history as well. I do see other doctors at other hospitals for other reasons, and have always made sure they keep my CF team updated with what they are doing for me. That way if I'm ever in the hospital for something other than my CF, I can have my CF doctors recommend treatment if need be. I've had my Infectious Disease doctor in Akron make a lot of recommendations for meds to use while I'm in the hospital that have worked. Whatever you do make sure your doctors communicate in case you do need to be treated at home and can't make it out of state.

 

[jdeastin]

Thank you both! I used to go to National Jewish and loved it, so I'm considering going back there. Just worried about the financial logistics (insurance, plane fare, hotel, time off work...) as well as having a clinic close by that knows me in case I have an emergency. Even now when I'm sick and go to my local PCP they don't know what to do with me other than ask what antibiotics I want. Trying to decide if it's worth it, or if I should just wait for the dr at my current clinic to retire.

The clinic I go to now is 1.5 hours away, and it is really the only one in the area. I could try to go to the next closest (5 hours away), but worried I'd end up in the same situation I'm in now.
Maybe I just got spoiled by going to National Jewish for so long.

Ratatosk - When I was a kid, my parents used to do the same thing for clinic visits. We'd take the weekend and go to the city (we lived about 4 hours from Denver), they'd always take us to the zoo, museum, amusement park, or something to make the trip fun and not just about the doctor. It was great!

 

[Ratatosk]

I think the key is to find a local doctor who plays well with others, defers to the CF clinic if there are issues. Otherwise it can be a waste of time and money. When DS was a baby I'd take him in to his pediatrician who was also head of the local cf clinic and the number of times we'd get told "it's just a cough, it's what they (people wcf) do" or it's just a virus, it's normal for them to culture a certain cf bug, no treatment is warranted. And we'd end up back at the clinic or going to the City because he had bronchitis, sinus infection, exacerbation from pseudomonas... So we'd just skip that step and call the cf doctor in the City.

In more recent years our pediatrician has been willing to cooperate -- I think he sees the improvements in his patients and pays more attention as to what's going on at the national level.

As for the trips to the City, we have a membership to the Science Museum and I get my trader joes fix.

 

[jaimers]

Are there specific aspects of the current clinic you don't like that could be addressed with the director there or is it just generally not happy with the care? My clinic is out of state (go to clinic in Boston, but live in NH) but is actually geographically closer to me than the in-state clinic. My husband is considered self-employed so we buy our own health insurance through the exchange so we picked the only plan that included my clinic in their network. Not sure what avenue you go through to get insurance (employer provided, vs. exchange, etc.) but when the annual renewal times comes up in a couple months maybe take a look at whT others options might be available that would allow you to travel to an out of state hospital but still be in-network.
I do know of a few CFers that travel a few times a year to be seen at NAtional Jewish but use their local clinic for more routine visits and have the two clinics exchange notes, etc. that could be a viable option if you get some doctors that are willing to coordinate with each other like that.

 

[MissAlexsBP]

Hi @jdeastin!

Good luck with your clinic appointments - I have switched clinics because I did not feel I was getting the care or time I needed at a clinic and I am SO happy that I switched. I was going to the Las Vegas clinic and wasn't as pleased with it (which was 2 hours away from my house) and I am now going to the Phoenix, AZ clinic (which is around 4 hours away from my house.) As far as 'out of area' goes, I have not had to do anything special for that. I made sure the Phoenix clinic was In Network for my insurance company and called to ask Phoenix questions before transferring my records there. I essentially did a pre-clinic interview to make sure that my new clinic would satisfy the needs which I felt was lacking in my other clinic.

Good luck with whatever you choose to do! As far as my two cents, I am SO happy that I switched to a clinic I was more comfortable with!

 

[LittleLab4CF]

In the pre-diagnosis years, I relied on a good PCP. I was his only CF patient for 15 years. Finally 2 additional CFer's found him. As much as anything, he was that Doctor who had no problems working with other doctors. We learned about CF together. As soon as a specialist would arrive at a solution he would take over monitoring and prescribing medication so I had a single doctor handling everything.

This wasn't cheap. My wife and I owned a business and I have to admit that the company got health insurance that most fit my needs. Nobody complained, one of the employees referred to it as "rich people's insurance". In a time when health insurance was a perk to entice good people, it was an expensive investment. My father was a self employed public accountant. If the cost is as exorbitant today, that is expensive insurance.

I grew up in a town of ~40,000 in the fifties and sixties. The doctor that delivered me was my all around doctor until age ten and then his partner until I was about twenty. Thank goodness that they both were good doctors. They met you at the hospital because they didn't staff the emergency room. They performed general surgery and fixed most problems that only much larger cities could support. That was three hours away in the adjoining state and insurance was a lot less portable.

I often wonder if a person can successfully fulfill their needs by choosing a local pulmonologist, GI and other specialists and forgo the clinic. Old habits die hard and I still choose specialists outside my CF clinic. When my old PCP retired I sought out an internist at his recommendation. What I can't relate to is how a pulmonologist without CF experience would be. The therapies are pretty standard for any number of pulmonary disease. It might be surprising from a maintenance standpoint. I believe that a CF clinic with the new genetic drugs and therapies is still important but probably most established medicine can be handled elsewhere.

Just a thought,

LL

 

[Erickagonz94]

It usually takes me an hour to go to my clinic because I chose to go to the best one possible because the first clinic I attended was not that great and I was not treated well. I live in south Florida and Jackson is a very nice clinic there is one doctor in particular that very strict, which is good since he always makes sure to maintain me healthy. Where do you live. Please chekc out my blog when you can: http://thoughtsofacfgal.blogspot.com/

I would love to communicatee and meet more members of the CF community.