www.incontinentsupport.org

All,

I have started a letter to the Director of the VA in hopes of getting a way to get a better quality diaper through the VA. Please read and proof the below. Since I don't know what all everyone uses, I placed XXXXX for that. If something needs to be taken out or put in, please let me know or repost the letter in the threads.

Honorable David J. Shulkin
I am one of many incontinent veterans who receive supplies from the VA to manage this disability. I am writing this letter in hopes to found out the correct way of getting better quality incontinent items through the VA for other veterans. I feel I am one of the lucky ones as my doctor and pharmacist listened to my concerns and procured items that allowed me to led an almost worry free life when I lose control of my bladder. Others have not been so lucky and have been told we cannot get that brand. I have tried to explore ways to petition the VA on getting better quality products for veterans, but have ran into “not sure how this is done” or what seems to be a long process of one approval board at the local level to others at various levels before the item is approved to be in the VA formula system.
Before finding a product which work for me I had to go through countless products which were poor quality and only meant for light incontinence. Most of veterans I have talked to via a support forum online are like me and have had the similar experience. When my incontinence started, over the counter items and lower quality items were able to handle it. It was not until it worsen I had to start exploring different absorbent items. As with most products what works for one person does not work for another. I cannot tell you how many items I have purchased over time trying to find which one worked for me and allowed me to conceal what I was having to wear.
Since the forum is anonymous, I cannot tell any names, but the major complaint is the types of absorbent material one can get through the VA is very poor quality and leaks most of the time. Many of us have made cuts in our budgets to purchase better quality items. Hopefully, the VA has an easy process of items such as Abena products, Dry 24-7, XXXXXXXXXXXX

I have enclosed a letter I sent to my doctor explaining why I needed a better quality product for my incontinence which convinced them to order them.

Sincerely,
Veteran

wow that looks great i am not gifted in writing though keep up the good work for advocating for us vets

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Thanks Steve. now if this was a college assignment I would have been stuck on the first sentence.

Updated revision:

I am one of many incontinent veterans who receive supplies from the VA to manage this disability. I am writing this letter in hopes to found out the correct way of getting better quality incontinent items through the VA for other veterans. I have tried to explore ways to petition the VA on getting better quality products for veterans, but have ran into “not sure how this is done” or what seems to be a long process of one approval board at the local level to various other levels before the item is approved to be in the VA formula system. I feel I am one of the lucky ones as my doctor and pharmacist listened to my concerns and procured items that allowed me to led an almost worry free life when I lose control of my bladder.
Before finding a product which work for me I had to go through countless products which were poor quality and only meant for light incontinence. My doctor also tried different prescriptions which either did not work or the side effects were too bad. I have thought about surgery, but at my age I feel it is not worth the risk of the complications. Most of veterans I have talked to via a support forum online are like me and have had the similar experience. When my incontinence started, over the counter items and lower quality items were able to handle it. It was not until it worsen, I had to start exploring different absorbent items. As with most products what works for one person does not work for another. I cannot tell you how many items I have purchased over time trying to find which one worked for me and allowed me to conceal what I was having to wear.
Since the forum is anonymous, I cannot tell any names, but the major complaint are the poor quality types of absorbent material one can get through the VA which leaks most of the time. Veterans who have not found this support forum probably do not know how to request better products from the VA. I first experienced this when my first Urologist believed he could only order what was listed in the VA catalog for incontinence. Other Veterans have been told the same thing even though they know others are receiving better quality items. For the longest time, I would only use what was provided by the VA at home and use what I trusted outside of the house. A member of the forum suggest I talk to my doctor about the products which were being prescribed and what I had found works for me. Many of us have made cuts in our budgets to purchase better quality items.
Hopefully, the VA has an easy process of adding items such as Abena, molicare, ConfiDry 24/7 to the VA catalog.

I too use the VA for most of my medical needs. But I have found that the diapers and pads they give me are very comfortable. More comfortable in fact, that they feel better to me than most real underwear. I have attached a photo of the available diapers that I receive from the VA at this time (September 2017).

Although I use a product called Men's Liberty (an external catheter) I also normally wear a diaper as a "backup" when going out in public to a special event, etc.

I just got off the phone with the VA as I have been trying to get much better protection than the crap they have been sending me. I tried a letter to them with the help of another member. It did not work. They said each VA pharmacy location is different and that they can only send out what is available at our location. Same goes for delivery. The trash they are sending me is though the USPS and refused me today to send via UPS. They are sending me something “new”, but have no idea what and would not tell me when I asked. My VA location sucks. Maybe I need to move to find a better one. Hell, maybe I’m better off in Canada.

Frustrated!!!

Have you talked to a patient advocate? I have been receiving premium supplies for around 8 years. I have been told the same as you. That I had to take what they offered. They are working off the national formulary. You could try Molicare briefs. They are made by Medline who has a contract as a VA supplier. Molicare briefs are pretty good. I wore them for years. I was told by the VA in the past that they were easy to get. Purchasing high end products can only be done by certain pharmacy purchasing agents. It is a special order not available through standard supply channels. I know for a fact that XP Medical is a supplier to VA hospitals across the country. This can be done. When I did it, I met with a patient advocate. I went in very polite and humble. I described my situation that what the VA was sending me for my incontinence was severely affecting my quality of life and I told them I was having to purchase my own items which I couldn’t afford. I am totally disabled and live off my veterans disability pay and am rated for my incontinence. I told them I was essentially home bound with the products they send me as they leaked all the time. I brought with me a sample of what they were sending me and what I was asking for. It was a wings diaper vs. dry 24/7. NO COMPARISON. This enabled a visual comparison of the features of each brief for them to see. The patient advocate understood. She brought in a pharmacy supervisor. Then I pleaded my case. The pharmacist agreed. I won. The supervisor put the wheels in motion and I received my supplies a couple weeks later. I have done this at two separate hospitals after being told I had to take what they offered. Veterans do this all across the country. You just have to be polite yet persistent. Don’t give up.

Thank you Don. No I have not gotten an advocate. The last time someone spoke up for me was my Senator. I am thankful to have excellent health coverage through my wife’s work place. My local VA Medical Center is a 6 hour trip to another State. There is a small VA clinic in my town.

This past summer, I got very sick and my local VA clinic could not help me as they don’t have the medical devices needed to provide care. But thanks to my wife’s health insurance I was able to go to a doctor and be tested 5 minutes from my house. Without telling you what they found, one of the things I needed right away was oxygen. They set me up with that to take home and the VA said they would provide it for me. Well, days later I called them back wondering where my oxygen was. The VA now tells me I need additional testing done before they can do that. Well, I’m not traveling a 6 hr trip, sick to do this testing they wanted done. I went back to the original place (payed for by my wife’s insurance) and had the test done. After the results were sent to the main VA Medical Center, they agreed to provide the oxygen. Another week went by, and still nothing from the VA. After calling them again, they gave me some BS and we’re not going to provide. My wife was furious and called our local Senators office. Within 30 minutes after that call, they called me and were sending over the oxygen right away. During all this time, a private company was providing me the oxygen I needed AT NO COST, to help a veteran.

I wonder if I swallow my pride, maybe another call to my Senator wouldn’t do the trick.

Bill

There is a patient advocate at every medical center and clinic. They work for the VA. They represent patients with grievances against the Clinic and try to get them resolved. Kind of like mediators. Other than that, if you feel it’s necessary, call your senator. Don’t be embarrassed. It’s nothing to be ashamed of.

I did not know that there is an advocate at our local clinic. I thought they would only be at the Medical Center. Thank you for this information.

I think that I will have to show that I tried to make these wings briefs with sure care inserts work. I will give this some time. But I will also wear a plastic pant.

For comparison which diaper from XP Medical would be best for use and comparison to wings to show them the reason why beyond a shadow of doubt? They have all my medical records, I should not have to go though this. I know, be nice.

Thank you for your help.
Bill