Trying to Get a VA Appointment

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SKlocinski

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So we were awarded benefits for hubby. Now we can't get a frickin' VA appointment. We want to go to a VA clinic closer to our house so we don't have to go to downtown Charleston and mess with all the traffic, not to mention lack of parking space. The VA provided us the phone numbers to call. When I call the extension for the clinic we want to go to it goes to voice mail. No one bothers to call back. When I call the main VA number they say they will "send a note". Then they send a message to the same person who never calls me back when I leave a voice mail. Surprise! Still no response. I don't have the time this week but I guess Monday I'll have to go park my butt there until someone makes an appointment or I wind up in jail for going psycho on government employees...the sad part is we don't even really want a VA primary care physician but my understanding is that we have to have one to get referred to the VA ALS clinic in Charleston. I actually sent an email to Robert McDonald (the VA secretary) because I've heard his office responds to these kind of things. I did get a return email saying they would be in touch with me but we'll see if that really happens. Just needed to let off some steam.
 

Atsugi

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Bob McD's office has a good rep. You're doing the right things.
 

frankb

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You describe the one complaint that I have with the VA system. It take me 30 days plus to get an appointment with the VA primary care physician so she can refer me to the Atlanta Med Center (then another long wait for an appoint with a specialty department). However, once at the med center I get excellent care.
 

SKlocinski

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You describe the one complaint that I have with the VA system. It take me 30 days plus to get an appointment with the VA primary care physician so she can refer me to the Atlanta Med Center (then another long wait for an appoint with a specialty department). However, once at the med center I get excellent care.

I can live with calling and them telling me that it will be 30 days before he can get an appointment. He is in the ALS clinic at MUSC so it's not like he is not getting care. What annoys the crap out of me is that I can't get to talk to a person other than the call center people that can only "send notes"
 

gooseberry

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S, I emailed Mr. Mcdonald and got the same reply. I gave it a few days and heard nothing. So I forwarded them my initial email with their response and asked for an update. Within 1 hr the local person that handled my issue was calling me. It was for home health. Suddenly Steve was approved. You must be the squeaky wheel.
 

gooseberry

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Frank, Do you tell them your diagnosis when you call? With als you shouldnt have to wait like that.
 

maryhahnward

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Call the patient advocate, tell them he has ALS and needs an appointment ASAP.
 

chally

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You must be your own advocate and have a lot of patience ! Never stop ! Tell them often it's ALS. Usually when I get a person to speak with I must remind myself that they are not the problem. It's the system! It suc! You will be tried every inch of the way so try to not freak out . Easier said then done! Good luck get a PVA rep to help and think about home health then ya don't have to go out at all.
 

SKlocinski

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I did finally get a call back this morning. The excuse was that the extension the Main VA gave me has "technical problems". Don't know if that means that the person whose voice mail it is is incompetent or it is not accessible or if no one is monitoring it. I found their fax number online and sent a fax this morning addressed to "Anyone Who Cares" and someone called me back pretty quickly. Set the appointment for May 25th. Tom has ALS clinic Friday and gets his PEG put in on the 11th. I wanted to give it enough time so that he was comfortable with the PEG before going to the VA and also he gets fatigued so quickly that more than one doctor appointment in a week wears him out. I am quickly becoming known as "the wife from hell" to the doctors!
 

SKlocinski

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You must be your own advocate and have a lot of patience ! Never stop ! Tell them often it's ALS. Usually when I get a person to speak with I must remind myself that they are not the problem. It's the system! It suc! You will be tried every inch of the way so try to not freak out . Easier said then done! Good luck get a PVA rep to help and think about home health then ya don't have to go out at all.

Yeah, our VA does have a program where the primary care medical professionals will come to your house. I think we have to get our foot in the door first though and get someone to refer us to it. Other than that, right now Tom doesn't really need any kind of home care. He can still walk around the house, climb the stairs and take his own shower. I have to help him with some minor things because his thumbs don't work like they are supposed to but mostly he finds ways around that.
 

gooseberry

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Good for you! If being the crazy wife works , use it when necessary. I pushed hard at times to get what Steve needed. After awhile I didnt have to push so hard because they knew I would do whatever I had to...
 

MyNexus2U

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Yes trying to get an appointment in a timely manner can be so frustrating. I know the system is overwhelmed but it is so hard to be patient. My VA clinic does not seem to have much experience with ALS or MND. I could be wrong but it is just a feeling. It seemed like we were constantly getting the run around being passed from one place to the other making no progress. We finally found a good patient advocate and a good social worker that has taught us how to properly navigate the system. Things are much better now and we are finally getting somewhere. Ask about the first choice program. If the VA can not see you in a timely manner (30 days I think) then you have the option to go outside the VA. You have to get approved first but it happened fairly quick for us I think. It has been a tough road. I am currently stuck with the diagnosis of PMA(progressive muscular atrophy) suspected ALS. I have not been able to work for four years as I have severe depression on top of all the other and just now got approved for social security disability. The SSI doctor (neurologist) took one look at me and told me to get a second opinion ASAP by a neuromuscular specialist in Tulsa by name. This neurologist and the MDA opened an ALS clinic in Tulsa last month. I now have an appointment with him next week at his office. Things have finally started moving for us and quickly. Try to meet with a social worker and a patient advocate in person. You may have to try several before you get a good one. Like gooseberry said you have to be a squeaky wheel. Keep us posted.

Bryan
 

chally

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Choice first card sucks! A real run around every time. Something I plan to talk to my senator about this week @ advocacy time in DC.
 

Green Queen

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S, I think you shall be The Queen of Crazy!!

You go, girl! Whatever works is the right thing to do!
 

SKlocinski

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MUSC and the VA here have a sort of partnership and many of the doctors work in both places. The folks at MUSC even said that the VA ALS clinic "has more resources". That translates to "it's easier to get more free stuff". At the MUSC clinic yesterday, they said that they would talk to the folks at the VA clinic and see if they can get Tom's getting seen there expedited. In the meantime they are trying to get Medicare to pay for bi-pap even though Tom's FVC is in the 60s. They said they will work something out. At least they agreed that he needs Bi-pap. I thought I was going to have to play the "crazy wife" card to get it.
 
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