Skipping the clinic

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Janie H

Senior member
Joined
Jun 23, 2013
Messages
714
Reason
PALS
Diagnosis
06/2013
Country
US
State
South Carolina
City
Rock Hill
I am considering not attending the 3 month clinic visit this month, I am doing well, need a PEG tube change but they would not do it at the clinic. Eight hours of one doctor after another, it's exhausting. I feel like I am stable at this point. Any thoughts?

Janie H
 
Janie.....be a good girl and go! Clinic sucks for all of us, I dread them, but we need to go!
 
My PALS is not a big fan of the clinic either, especially if there has not been any big changes and it was just a routine check-up. He has gone for up to 5 months between visits. Of course since he signed up with hospice in Dec 2013, he stopped going altogether.
 
After diagnosis, we had two total meetings with healthcare professionals. One to order equipment, the other to pick it up. The consults with neuro and pulmonology just seemed like play time, a time to give the doctors some practice and gather some data points for their own research.
 
I too have thought about dropping them. Same thing each time. Plus they keep pushing things I've already told them no to. Don't know what I'll do but I won't judge anybody for what they decide
 
>Janie.....be a good girl and go! Clinic sucks for all of us, I dread them, but we need to go!

for the greater good. we are their lab rats, like it or not. to find a cure they need us ... again, like it or not ...
 
After diagnosis, we had two total meetings with healthcare professionals. One to order equipment, the other to pick it up. The consults with neuro and pulmonology just seemed like play time, a time to give the doctors some practice and gather some data points for their own research.

I agree. Unless your PALS get something acute. I see no reason for an ALS check-up if you are progressing quickly.
 
For us it is a way to get things we need quickly and to be seen by doctors more quickly when a problem arises. We call clinic and they take care of it. They are very good about addressing our concerns and problems after clinic.
 
Going to the clinic was so hard on Joe. Once we received all the information, equipment and little supplies he decided that was it. After the trach and being bedridden, it was out if the question. I had to have an ambulance to take him to the hospital to have his trach changed. It took him 4-5 days just to get over that. I was blessed to have a RT come to the house to change it out. Once on hospice - no visit needed.

Debbie
 
My husband finds it difficult as well because it is so tiring driving 3 hours round trip and seeing all the people- who really can't help him except ordering needed items to be sent tour house. So now we mostly call the social worker at the VA hospital or the occupational therapist who will make sure things are ordered that we need (such as a shower chair, suctioning machine, etc.). The concept is good, having all the specialists come to you but..... When energy is so low for our PALS, it can take its toll physically.
 
when my husband went it was only every 6 months. if you are feeling stable right now and don't need any equipment I agree the trip is too exhausting and not all that productive. Our clinic had one every month, so if we didn't go one month we could go the next. if that is the case for you, don't sweat going every 3 months unless you get something out of it. we have completely stopped going as of last year
 
Thank you all for your input, my son is going to call and speak with the clinic tomorrow, I will let them decide. I was not going to stop completely, just this time, I feel like I am in remission.
Janie
 
Hope you stay there Janie
 
I am glad that you feel like you are in remission. I never took my mom to a clinic - never really felt they could do anything that my mom's primary care physician couldn't do for us. At her age I felt it would be too tiring, too confusing, and of absolutely no benefit.

Trina
 
P/CALS,
This thread horrifies me, because those new to the ALS world might infer that clinic visits are some kind of "pay it forward" obligation to future generations. They are _not_. Go if you benefit. Don't if you don't.

Epidemiology data is coming from the registry and one-off studies.

Data about treatment/equipment effectiveness, such as it is, is widely available in forums like this, claims data, existing chart data, not to mention the knowledge bases in SCI, TBI, MS, MD, all of which are inadequately leveraged in ALS. Additionally, coordinators at the MDA/ALSA should be mined further than they are insofar as they make home visits. The same is true for hospice, palliative care staff...I could go on.

If you think your comments at clinic about how much you hate your wheelchair or your unusual ear pain are bubbling up to some kind of national/global database that is going to drive future treatments, I have a bridge to sell you. FVC curves? "Strength test" results? Please. I've published in clinical journals, I've done meta-analyses and systematic reviews, and it's the actionable that gets acted on (yes, that is a tautology :)

We are the patients and caregivers. They [the clinics] are getting paid. Check your EOBs for how much. Even if you have no co-pay and/or have met your deductible, what is the value of your time? Lost sleep? The effort, emotion and exhaustion? The opportunity cost if that effort were applied to something more ... fun? Meaningful? Lasting?

The last time we got anything substantive from clinic that we couldn't have accomplished otherwise was a signature on the DME's order for Larry's PWC in 2011. When we last went, more than a year ago, I'd requested in advance that one of the usual drop-ins be excluded from our schedule [which is always your right] because she generated more harm than good. I got tremendous and less-than-truthful pushback on that simple request (naturally, I won, but why a fight? It's called billings) and that was additional evidence that patient wellbeing, in the true sense, was not the priority.

Obviously, all clinics are not equal. Your first health care duty now and always, healthy and sick, is to yourself. Go where you need to be, do what you must, then be where you want to be. Your loved ones wouldn't have it any other way.
 
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