Experience with the VA?

[BabyHailey1977]

My journey is really getting frustrating. I’m one of the lucky ones that can get free diapers from the VA. That fact is not lost on me. I’ve been working with my PCM on getting better quality products. I started out getting cheap pull-ups. They didn’t work and I let my PCM know why. Then she ordered me the Kendall’s. Those are basically a plastic backed paper towel. She then moved on to Attends Advanced but with those I have to change A LOT.

She knows that I want to wear diapers and said that in order for me to get better diapers I will need to complete the non-formulary order form. This must be completed by a urologist. So I made the appointment with my urologist, had urodynamic testing done and the results came back with severe OAB and urge incontinence. Basically, my bladder doesn’t like to be more than a quarter capacity.

So my PCM has the results and talked to the Pharmacy about getting better diapers. I got excited until I saw they ordered me Prevail pull-ups and boosters. I explained that pull-ups don’t work, and that I need to get undressed to change. That’s extremely inconvenient, especially when I’m out and about.

I have a video appointment scheduled for next Friday with her. I’m really getting angry and frustrated. Hopefully this will get sorted out during the appointment.

I recently lost my job so for the time being, I need to rely on the diapers furnished by the VA.

Who has better luck with the VA? What am I doing wrong?

 

[TrueHero]

I’m sorry you’re going through that. I work in pharmacy and have seen the loops people have to jump through to get something that works for them.
It’s possible the best bet is to but what you want have request reimbursement, but I’m sure that is a battle in and of itself.
Good luck

 

[BabyHailey1977]

I’m sorry you’re going through that. I work in pharmacy and have seen the loops people have to jump through to get something that works for them.
It’s possible the best bet is to but what you want have request reimbursement, but I’m sure that is a battle in and of itself.
Good luck

Thank you. I’m trying anything. My PCM has even said I should talk to patient advocacy to get better products. I tried that and they sent me pull-ups again. I have another appointment with my urologist as well, and I’m going to see if she can help in any way.

 

[bedwetterdavid]

There's a good thread on this. I was just recently successful in going through this process and getting Northshore Mega Max diapers. The key for me was to talk to the Veteran Advocate and explain the situation to her. She emailed my urologist and primary care physician, and once she did they put it through. Here's the thread:

How many other disabled veterans are here?

Very sorry for the confusion, what I meant to say was that my VA Facility's Supplier does not have a relationship with Northshore. I have PT at my VA Facility this Friday, and I will stop by the Veterans Advocate's office to start that connection. All in all, my local VA Facility has been very...

www.adisc.org

Please feel free to DM me if I can help more. Happy to help. Good luck!

 

[BabyHailey1977]

There's a good thread on this. I was just recently successful in going through this process and getting Northshore Mega Max diapers. The key for me was to talk to the Veteran Advocate and explain the situation to her. She emailed my urologist and primary care physician, and once she did they put it through. Here's the thread:

How many other disabled veterans are here?

Very sorry for the confusion, what I meant to say was that my VA Facility's Supplier does not have a relationship with Northshore. I have PT at my VA Facility this Friday, and I will stop by the Veterans Advocate's office to start that connection. All in all, my local VA Facility has been very...

www.adisc.org

Please feel free to DM me if I can help more. Happy to help. Good luck!

Thank you so much.

 

[Edgewater]

Thank you. I’m trying anything. My PCM has even said I should talk to patient advocacy to get better products. I tried that and they sent me pull-ups again. I have another appointment with my urologist as well, and I’m going to see if she can help in any way.

Welcome to the 'Process!' I am also in the system and working the system step-by-step!

**I strongly recommend that you find the Thread regarding: Are there any disabled Vets here and read it from to back with detail and notes. Among other discussions it does cover what needs to happen.

**I have my urologist meeting with a procedure following the office visit in February 2024. I will be requesting the document you got, BUT with the specific request that I need a premium level diaper that allows me to sleep a full-night and contains my night-time volume without leaking. IN ADDITION: the urologist needs to list the specific diaper you need. NOTE: How and what to list is found within that Thread. As part of letter, your urologist needs to state that you have tried everything that the VA has provided and does not supports you need.

**I will be calling the US supplier for the diaper I need and assuring that they have a selling relationship with my VA Facilities Incontinent Suppliers. and assure they are linked. I am told by my VA Facility that they have serious problems with their current supplier.

* I will be meeting this next week with my Veteran Advocate to assure she has a clear idea of what life as an IC person is like and that what the VA is doing to thousand of other vets is a serious problem.

 

[bedwetterdavid]

* I will be meeting this next week with my Veteran Advocate to assure she has a clear idea of what life as an IC person is like and that what the VA is doing to thousand of other vets is a serious problem.

I wouldn’t beat them up too much though. Your veteran advocate is your friend and they can help you navigate the system. They all want to get you exactly what you are asking for, and they can tell you the exact formula that needs to happen to get it.

 

[Edgewater]

I wouldn’t beat them up too much though. Your veteran advocate is your friend and they can help you navigate the system. They all want to get you exactly what you are asking for, and they can tell you the exact formula that needs to happen to get it.

Never meant it to sound like I was beating-up on my advocate, only stepping with detail what the difference in product is and why it matters. The VA hearing support is Amazing covering 99%+ of the needs of any Vet that qualifies with three of the top products on the market. Just looking at bringing that level of care to IC folks. My support care with my local VA has been amazing, zero complain regarding interaction with anyone.

But, IC care seems to be a nationwide issue, which commonly appears to be; "Well, it s all we have to offer!" or more likely; "It is all our supplier has to offer!" As a defense to everyone: Knowledge regarding IC products is extremely low and knowing that there is a difference is even lower!

 

[BabyHailey1977]

I sent a message to my VA Patient Advocacy last night. I explained that I’ve tried all the available products and why they didn’t work. I then asked for help with a nonformulary request. We will see.

 

[CptKirk]

I have had a LOT of experience. Fell free to ask me anything. IF I can help, I will. Kirk AKA CptKirk

 

[BabyHailey1977]

I have had a LOT of experience. Fell free to ask me anything. IF I can help, I will. Kirk AKA CptKirk

Thank you a lot. I recently lost. Y job, so getting quality diapers that I don’t have to purchase will be very beneficial. I sent a message to the patient advocacy office, and I’ll have to wait until at least Tuesday for a response.

 

[CptKirk]

Thank you a lot. I recently lost. Y job, so getting quality diapers that I don’t have to purchase will be very beneficial. I sent a message to the patient advocacy office, and I’ll have to wait until at least Tuesday for a response.

What do you do for a living? Where are you from? Just asking as I have a friend 35 miles E/NE of Nashville with a thriving basement/crawlspace/waterproofing & foundation repair business, looking to expand into pest control. IF you are anywhere nearby and have the ability to learn AND manage people, I can have you a job in about 15 seconds LOL. HUGE BONUS if you can speak Spanish as we can't get Americans to work for us despite really good pay, as in the crew leaders/sub contractors all make at least 100k.
I'm his "Production Manager" despite not being physically there since the day before Thanksgiving in '19. Was supposed to be back in time to see MY Colorado Avalanche play in Nashville in mid January but my minor back surgery turned ugly and I could not move anything below my waist for 2 weeks. My life spiraled downward (healthwise) since and I STILL have yet to be able to get back down though I do still do some work for him.

CptKirk

 

[BabyHailey1977]

What do you do for a living? Where are you from? Just asking as I have a friend 35 miles E/NE of Nashville with a thriving basement/crawlspace/waterproofing & foundation repair business, looking to expand into pest control. IF you are anywhere nearby and have the ability to learn AND manage people, I can have you a job in about 15 seconds LOL. HUGE BONUS if you can speak Spanish as we can't get Americans to work for us despite really good pay, as in the crew leaders/sub contractors all make at least 100k.
I'm his "Production Manager" despite not being physically there since the day before Thanksgiving in '19. Was supposed to be back in time to see MY Colorado Avalanche play in Nashville in mid January but my minor back surgery turned ugly and I could not move anything below my waist for 2 weeks. My life spiraled downward (healthwise) since and I STILL have yet to be able to get back down though I do still do some work for him.

CptKirk

I wished I lived there, that would be a great opportunity!! I was a manager at a place that warehouses and sells millions of items online. I’m afraid to say the name. But I became a scapegoat for a shitty boss. When I found out my boss was being dishonest I started keeping detailed notes and recording my metrics. My boss was saying my metrics need to improve, but he was the one that was making all the decisions that negatively affected my metrics. He’s the one that humiliated me by standing directly outside the bathroom door while I changed my diaper. He lied to me multiple times to save his own ass. I went to his boss and HR with my detailed notes and metrics they said they would talk to him. Instead of the problem correcting itself, a week later I was brought into the office and presented with two options. Either agree to an improvement plan that was literally impossible or take a severance package. If I chose the improvement plan and failed (which was designed specifically for that) my severance would drop by 60%, so I took the severance.

In all my 21 years in the military, I’d never encounter a boss like that. I hold a masters degree in Executive Leadership and I know exactly how to lead, develop operating plans and engage with employees. I just could sacrifice my ethics anymore.

 

[BabyHailey1977]

I just received a phone call from a VA Pharmacist. She said she’s calling regarding the message from patient advocacy. She said they they can only purchase products from Attends and Kendal due to a contract. I asked about a nonformulary request and she said no because of the contract. Basically if I want anything other than the Kendal or attends, she said I need to buy them myself.

Does that sound correct?

 

[SparkyDog]

I just received a phone call from a VA Pharmacist. She said she’s calling regarding the message from patient advocacy. She said they they can only purchase products from Attends and Kendal due to a contract. I asked about a nonformulary request and she said no because of the contract. Basically if I want anything other than the Kendal or attends, she said I need to buy them myself.

Does that sound correct?

unfortunately everyone usually has a contract
and you can only get what they stock / have a contract with
and many places that's only depends or tena + an in house brand

im blessed my medical supply store has a contract with Abena but due it being a "premium" diaper I have to pay an upgrade fee of 0.95 cents per diaper
though that beats $2.50 a diaper

you can see if different insurance companies have different options

unfortunately in the industry they like hospitals only stock the cheapest of the cheap and just tell you to change more often. They are way behind on what's available in the private market and don't live with IC which is a stupid system everyone is stuck in.

 

[Edgewater]

Stopped in to meet my VA Patient Advocate and to discuss my concerns regarding the VA's choice regarding Incontinent Support and what low quality VA supplies. Interestingly enough she was beginning to have problems herself and after I walked though what VA is currently providing regardless of the needs of the patient and what is available in today's market, she elected to recommend a National Review and reconsideration of the products VA is providing.

I am just starting in the system of obtaining the needed background documentation and needed letter to submit a request.

Understanding that VA is providing the Best Quality of hearing aids in the market, selected and adjust to the requirements of the veteran. There is not reason, why VA is providing the worst products available in todays market for Incontinence. I offered to bring in the products that the VA is currently forcing veterans to use and what is considered market leading.

FYI: See your AV Patient Advocate

 

[SparkyDog]

@Edgewater see I think it really helps when the people you're dealing with are also dealing with IC
I bet the bank the reason VA has the best of the best hearing aids is because the people who make the decisions have hearing loss & they wanted better hearing aids
now it shouldn't work that way but this is the world we live in
just need someone who is high up and has IC to bring in better products

 

[BabyHailey1977]

I had an appointment with my PCM yesterday regarding diaper availability. She agrees that my urodynamics testing revealed that I needed better diapers. I think she needed that to know I didn’t just want better diapers.

I told her about the conversation with the VA pharmacist that said I can’t order different diapers than what they carry. She said she honestly doesn’t know the process and just listened to the pharmacy. She did order me another case of “High Capacity Adult Diapers” to see if they work. After these, I will have tried everything on their list.

I wish I could get my patient advocacy office in contact with the ones that successfully ordered better diapers. That would make things a lot easier.

During my appointment, I actually pulled out an Attends, and Kendall that they gave me. Then I pulled out one of my Seni Quatro’s and showed her the difference. She was floored and could see how cheap and terrible the VA diapers are. She said she could now understand how they could leak without leak guards. I explained that adding a booster to a diaper without leak guards just means that more urine will leak out, there is nothing to stop it.

Does anyone have advice for me, or a link to the nonformulary request page? I can’t seem to find it again.

Thank you.

 

[SparkyDog]

@Edgewater can you help @BabyHailey1977 with the forms she's looking for?

 

[Edgewater]

There are at least two, at least that is my understanding.
There are specific steps that are required and (1.) my medical records provide my long history being U-IC and the tests, surgeries and medications that have been used.
(2.) My (your) use of what the VA currently provided, which provides support that you have tried to find something that works.
(3.) At this point, I have a meeting with my Urologist and will likely complete one more procedure. During that meeting, I will be asking for him to provide my VA with a: "Letter of Medical Necessary." Which begins the process of having my VA pharmacy to have their supplier provide the level of diaper's I need.
(4.) This will likely evolve another form from my VA MD requested them to make special exception.

(5.) I will be contacting my supplier and determining if they have contact with my VA's pharmacy supplier and if not please contact them. It will likely help if your supplier is the Representative of the brand you use. For me that will be NorthShore Diapers.

** I have also requested that my Patient Representative start a National Review regarding the quality of Product that the VA is accepting for their IC clients.

Your are a Veteran of the US Military and should fully understand two things !: The Process is slow and takes time! 2: The squeaky wheel gets the oil. You have to keep pounding at the door.