VA What should I expect to receive from VA

[Jhettinger]

After reading all the post regarding VA Medical Support I have some questions for the audience.

Atsugi thanks for your guide.

I read that an ALS team would be appointed to my case. My VA PC Dr said she is that team leader. I am confused, she knows nothing about ALS. First visit she told me to lose weight. I dropped 15 pds of muscle before I saw her. My neuro says maintain weight. My VA PC Dr says go to this or that clinic and they cancel appt because DR write up is confusing to them.

Basic question What should I expect? PVA is overwhelmed here and follow up an issue.

 

[DaChief]

I found the same issue with the local VAMC. My PCP doesn't have a clue about ALS. The Mayo Clinic in Jacksonville recommended that I start on a new prescription and I tried to process through the VA but my PCP stated he did not want the responsibility of monitoring it and would not get it filled through the VA. I ended up getting an appointment with the main VA Hospital in Johnson City (2 hours away). ALS falls under the SCI section. They do not have a neurologist but I am impressed with the level of support I was given there. Every department leaned over backwards to assist. They had no problem with the prescription from the Mayo. They issued me a cough assist, suction machine and fitted me and ordered a PWC even though I am moving back to FL in two weeks. The head of Prosthetics approved ordering it and shipping to the Tampa VA so I could pick it up there. They also coordinated everything for a vehicle purchase and I now have a new converted Honda Oddessey sitting in the garage that only cost me $16k out of pocket.

 

[Rhino1]

After reading all the post regarding VA Medical Support I have some questions for the audience.

Atsugi thanks for your guide.

I read that an ALS team would be appointed to my case. My VA PC Dr said she is that team leader. I am confused, she knows nothing about ALS. First visit she told me to lose weight. I dropped 15 pds of muscle before I saw her. My neuro says maintain weight. My VA PC Dr says go to this or that clinic and they cancel appt because DR write up is confusing to them.

Basic question What should I expect? PVA is overwhelmed here and follow up an issue.

I am sorry you are having such a hard time with your local VA .Yes you should have a team in the sci clinic and also a PC who should be familiar with SCI.i go to the Tampa SCI clinic for all of my ALS related care,and see my PC at the ST Petersburg VA for all other medical needs. Every 3 months I see my ALS team, and once every year I am admitted in the clinic for 5 days of testing. The ALS team are very helpful in recommending your aid and attendants pay increases in a timely manner, and providing with cough assist, suction, and Triology machines, Power wheelchair,hospital bed, and anything else you may need.and your PVA rep should be able to help you apply for your HIPAand HISA grants to make your home accessible and for your vehicle grant. I highly recommend the Tampa VA they will even provide transportation to and from the hospital. Call the PVA at Tampa or Bay Pines St Pete for help getting you in the system. Todd Jones is Very helpful.
Good luck

 

[Atsugi]

JHET, you should expect nothing but the best, most dedicated and knowledgeable professionals.

Despite VA's problems and well-deserved reputation for being overwhelmed, I and many of my fellow veterans found that VA can deliver the best care in the world, on time and with a smile. I don't know why some of us have such positive experiences and others can never catch a break.

The PCP is your primary advocate for all health needs. But, however, the ALS team is your primary contact for all things ALS. There should be a knowledgeable doctor who is the ALS team leader. They should have a collegial and cooperative relationship.

This PDF is dry reading, but I would read and understand every word: VHA Handbook 1101.07 Amyotrophic Lateral Sclerosis (ALS) System of Care Procedures

Where are you getting your ALS care? I don't see any VA ALS clinics in GA. I think the closest is Charleston. If you are unable to get the care you need, find a clinic you like outside, and (if they will take VA payments) ask your PCP to put a request for Fee Basis in the system.

 

[Jhettinger]

Atlanta VA- I think they use Emory
I read the pdf VHA Handbook, I do not think I am getting the care defined in this manual.
I will do more research and get back with you.

Thanks again.

 

[chally]

Get it all! SAH grant, HISA grant , van, pwc braces breathing machines, etc etc
PVA rep are good advocates for us with ALS. My guy here in WV got me a Hugh com rating plus aide& assit pay
If you need it ask for it and don't take no! The VA is so helpful but can also mess up seems each one is a little defferent . Good luck.
Chally

 

[Atsugi]

Do not let anyone say, "You don't need that right now. Come back after you lose that function, and then be re-evaluated for it." Anyone who says that does not understand ALS. VA guidance (but I can't remember where) is to be as supportive as possible for ALS. There is no auditor in the world who would give a VA technician grief because they were too fast in giving benefits to a terminally ill veteran.

 

[Jhettinger]

OK so went to my Neuro Dr VA and asked for a referral to Emory ALS Clinic. Phone call today was "you need private insurance, and your insurance co (tricare) does not want to approve." So next move is to go to my Tricare PC Dr to get referral to Emory or go through my civilian PC Neuro Dr.

Whew is this complicated.

What do other people in ATL VA do?

Thanks for replies.

 

[DaChief]

While I am not in the Atl VA system, it was my civilian PCP Dr that gave me my referral to the Mayo in Jacksonville.

OK so went to my Neuro Dr VA and asked for a referral to Emory ALS Clinic. Phone call today was "you need private insurance, and your insurance co (tricare) does not want to approve." So next move is to go to my Tricare PC Dr to get referral to Emory or go through my civilian PC Neuro Dr.

Whew is this complicated.

What do other people in ATL VA do?

Thanks for replies.

 

[frankb]

What a tight spot you are in, John. I was fairly much of a basket case following diagnosis and did not like the long wait (at that time) for VA medical approval so I went directly to the Emory ALS Clinic. In fact, Dr. Glass provided the confirming second opinion. Fortunately for me I was already eligible for medicare so Tricare picked up expenses not covered by medicare.

My problem with the VA is that I must see my VA PC (Austell right now) - which requires up to 30 days for an appointment - to get a referral to the VA Center on Clairmont.

My solution to that problem has been scheduling appointments with Dr. Fournier (Emory ALS Clinic) as a medicare patient. Dr. Fournier orders anything I need from the VA and also secures appointments with other VA departments that are not ALS related. As a side note, the VA contracts with Emory for neurological services and Dr. Fournier is the neurologist from Emory who is on staff at the VA on Mondays. She also occasionally works out of the Emory satellite location at Executive Park which is off I-85 (much more convenient for me since I live in Sandy Springs.

This procedure works out exceptionally well for me. Hope you can use at least some of the info. Good luck !/Frank

 

[Jhettinger]

frankb Thanks for info. I just cannot deal with all the shuffle in the VA system. I do not have the time to figure it out, it baffles me. I think I am going to my Tricare PC Dr to renew referral to my civilian neuro for a referral to Emory ALS. whew

 

[gooseberry]

Dr. Donald Higgins is in charge of the neurology/als section for va nationally.
Donald dot higgins at va dot gov

He will help.