Why Give Up on MIST Treatment and Crow Boot? Jack Kegley's Story

UPDATDJack Kegley, USMC

UPDATED: 5/18/2013:
Mr. Kegley reports that he is now getting treatment that is satisfactory to him. Thanks for everyone's help!
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ORIGINAL STORY:

Jack Kegley USMC is a 100% disabled Veteran (Vietnam) currently receiving treatment at the Seattle VA.

With the use of treatment such as MIST therapy, skin grafts, negative pressure therapy and specialized boots to offload the wound, his wound shrunk to the size of a pencil lead and was continuing to heal. Then the VA decided to give up on him. Why?

In 2007 Jack sought treatment of a diabetic ulcer about the size of a quarter, on his right big toe. Elderly diabetics are frequently at risk for injuries of this sort and, if not properly treated, they can grow to the size of a nickel or quarter, and compromise the patient's health generally.  For two years he was treated weekly at the dermatology clinic where a nurse practitioner would debride the foot (that is, scrap off any dead tissue), wrap it in a bandage and send him on his way. This did not result in healing.

Typical "Crow Boot"

In 2009, a new approach was tried: instead of treating Jack as an ulcer with a patient to be managed, he was treated as a patient with an ulcer to be healed.. The more aggressive and holistic approach went after not just the dead tissue of the toe, but the entire patient's nutrition (vitamins and minerals), blood sugar, bio mechanics of walking and so forth. This included the use of a Celleration Corporation “MIST Treatment” (which is also approved at other VA facilities and at Madigan Hospital). Plans were made for a "crow Boot" made to offload the foot even further and perhaps a skin graft to close the wound completely. The ulcer began to shrink and reached the size of a pencil lead.

However toward the end of 2012 that treatment was terminated. The Mist Treatment device was taken away and the previous, ineffectual treatment of scraping the wound was resumed. What does this mean to Jack?

He wrote to the VA several times:

"Let me start this conversation by stating that I am pleased with the level of care that has been provided to me, under most circumstances, by those I have worked with at the VA Seattle and that the following is not reflective of the entire staff and facility.

I am now back at the position I was a year ago with no indications to what type of progress they expect to make, how they expect to offload the weight on my toes (I now have wounds of both large toes) or give me any indication as to the future plans.  They are even talking about taking the scooter away at some point in the future.  I will not tolerate going backwards, I will get out of the VA system and seek private care before I let this return to a point it was a year ago.
Now that they have cancelled the crow boot which was suppose to offload my right foot, and made other changes that do not give me confidence, there are no indications as to when they expect to do anything other than debride the foot.
It has now been 8 weeks since Podiatry took over care of the wound, I am no better than I was when they started, my second toe is healing as expected (but no indication as to why the foot blistered in the first place) and secondary wound has occurred on the side of the original injury.  When I was receiving the Mist treatments, infections were non existent ( I am now under antibiotic care for an additional 6 week to fight a new infection) and an explanation was never given as to why I only received 3 of 27 mist treatments authorized by fee services and why the treatments were cancelled. No plans have been discussed as to future offloading of the wounds or future treatments other than a weekly debridement.  That treatment has now been denied for the future with no explanation to me as to why.
As a Marine I learned the difficult we did right away and that the impossible took a little longer.  I will not stop this type of correspondence until my status returns to a satisfactory state or this issue is resolved.
Sincerely
John M Kegley
USMC"

Lest you think that MIST Technology is some strange, new-age things, see the Bibliography of studies proving its effectiveness. It's not as cheap in the short run as debridement but, on the other hand, it was fixing the problem. The crow boot is not exotic either.
The VA system is not a privilege or a nice-to-have; it is a right that was earned by service to our nation. It is not a place to mess around; it is a place to implement effective treatment. Why was the treatment that was working ended and the treatment that was not working resumed?
Why the change?
Who benefited from stopping the treatment that worked?
So far, Jack has written several times to the VA and not received any response giving him a satisfactory response as to why the Seattle VA Hospital decided it didn't like MIST treatments and the crow boot. What will it take to get these questions answered and effective treatment resumed?

Saluting The Speechless

This week at the VA Hospital on Columbian, I was working with a client. He was there with two family members, I was with another volunteer from Veterans And Friends of Puget Sound, and jointly we were shepherding this elderly veteran through the process of getting the basic exam necessary for medical assistance there.

He was certainly deserving; he was a member of The Greatest Generation and I won't go into the details, for the point of my story was this: he could no longer speak or write. Communication was difficult. It seemed as if he had lost mental function, and it's hard to tell whether he had, for his hearing was not the best either. People around him typically spoke of him in the third person; there seemed little point in speaking to him since he could not respond and it was not clear that he understood anyway.
This changed when one doctor was told that the client was hard of hearing. The doctor started giving directions in a loud voice: "Can you raise your right hand? Can you give me a thumbs' up with your left hand?" and so forth. The client did all that, subject to some restrictions obviously of a physical nature. It became apparent to me that he was mentally alert to a significant extent.
I didn't know what to do about that. I made an effort thereafter to speak loudly into his ear where we were going next, "We need to get a blood draw, is that all right?" But it is hard to keep this in mind, when the responses are minimal. The responses were there, but they were purely physical and difficult to feel as communication.
Then it happened. We were in a waiting area and, as often happens, struck up a minor conversation with another waiting person. When that person left, he looked straight at the client and gave him a salute. The client gave him a relatively sharp salute right back.
This nonverbal message communicated a lot: respect, presence, interaction, normalcy. It is a part of the military culture that was important to him. It was something he could do and feel good doing, and in the process receive the respect he merited.
For the rest of the visit, I made a point of encouraging those present to give him the salute. He always responded. After we loaded him into his vehicle to be taken home, I faced him and did what I have not done since the Boy Scouts: gave my best salute. He returned it with firmness.
There is nothing more to say.

What Does "It's Taken Care Of" Mean To You?

Last week I sat in a meeting with an Associate Director and a Patient's Advocate at the Seattle VA Hospital, and the question came up of necessary medical supplies for a disabled veteran with whom we are working.
"It's been taken care of," said the PA.
Now, in the real world, a problem is taken care of when it is solved. When a patient needs some supplies, it is taken care of when the patient has the supplies.
In fact, in business the problem isn't "taken care of" until the patient has the supplies and has been asked whether the patient is satisfied with the way things went.
That's how you stay in business. You take care of problems by taking care of your customer. They will then take care of you!
How it appears that "take care of" has another meaning: "not take care of".
Today I called the veteran's family and was told that none of the supplies had arrived. This is nearly a week after being told to my face that the matter was taken care of, I learned that not only was the matter not taken care of at that time, but nearly a week later it was still not taken care of ... and the veteran/customer/client had not been given any idea as to when it would actually be taken care of.
If this is what employees at the Veterans Hospital think is meant by "take care of", they need to be tested for their comprehension of the English language.
I will be checking with this veteran's family on a regular basis to see when the matter is truly "taken care of".
I have not named any names here so far. First, the veteran's privacy will be respected absolutely, and until the veteran receives the care earned by fighting for our country, I'm not going to risk the quality of care by even asking to print the name. Second, what has happened so far in this matter is an employee not doing his jobs, but the reason for it is not yet known; is it policy? is it the culture at the institutition? is it a failure of training or leadership? I know for a fact that there are some very, very good employees at that hospital, so until we find out, I won't blame or shame the individual employee, but only report the facts necessary to get the problem solved.

William Booker Welcomed Into the VA System - A Success Story

William Booker Arrives
At Seattle VA Hospital

Today the staff at the Seattle VA Hospital welcomed Mr. William Booker, one of the last of our Tuskegee Airmen, as he went with his family through the process of getting the VA Photo ID needed to access its resources.
Until earlier this month, Mr. Booker was having difficulty gaining access to the VA system. As blogged earlier, when making inquiries as to his eligibility, his wife Dolores had been told that their income exceeded the statutory cut-off. This didn't seem right but what could they do? Rules are rules.
As it turned out, when the Booker family tried again with the help of volunteers from Veterans and Friends of Puget Sound (yes, we are boasting ;-)   we discovered that Mr. Booker's medical expenses should have been subtracted from his pension income in determining whether he met the qualifications. With this small correction, he easily qualified. A couple of weeks ago, the Booker family, our volunteers and the VA Hospital eligibility staff worked together to get the appropriate forms filled out correctly and into the system, all right and tight.
Today (February 27, 2013) Mr. Booker arrived at the Seattle VA Hospital to get his photo ID. The parking lot was very busy, but the valet service made it possible for him to disembark in his wheelchair and enter the facility, while the valets took care of the family van. He, his family and a couple of volunteers went to the eligibility determination station on the first floor, where it didn't take long to get his picture taken.
Next, our little party took the elevator by the entrance to go to the 2nd floor to make an appointment for his initial medical checkup. As you exit the elevator, you pick a number from the machine to establish your place in line; there are four categories of visit so make sure you pick the correct category and push the correct button, so you get the right number.

I 'm not mentioning any staff members' names in this blog post, because I didn't ask them. Yes, the 1st amendment and all that means that I could list what I saw on their nametags, but isn't it best to ask first? especially since they were all being so darn helpful. They know who they are and their efforts were greatly appreciated!

We waited about 10 minutes in the 2nd floor lobby, which didn't seem bad considering that we were category "B" - unscheduled visit. The interview was in an office with a door that closed for patient privacy, and the staff member gave us all the time we needed to answer questions - and you can believe that we had multiple questions! Due to the high volume of demand, there was about a five week delay for the initial checkup, but the staffer explained that if something came up in the meantime, he could go directly to the VA Hospital's ER for help.
Afterwards, our party went to the 1st floor to meet a Patient Advocate, because it can be helpful for family members who may be advocating for the veteran to know who they're talking to, and vice versa. While the family was discussing Mr. Booker's situation with one of the advocates, an Assistant Director stopped on the way by and welcomed them.
On the way out, the guards at the front desk suggested Mr. Booker wait inside the building, where it was warmer, while the valet went to get the van. They, along with everyone else we met today, were quite welcoming and seemed pleased to have met Mr. Booker.
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One lesson to take from this story: when in doubt, apply for benefits. If you or your family member might qualify, get the form and fill it out.  It's o.k. to use a screening checklist to give you ideas as to what to apply for, but do not try to figure out yourself if you qualify; do not let someone else try to figure out if you qualify; let the system figure whether you qualify. Remember that the Bookers could have gotten successfully enrolled into the system, and gotten the help that they had earned, much earlier if only they had known. It looks like they will be taken care of from this point, but there must be other veterans in similar situation who don't know they qualify for VA help that they earned through their service.

Quick Screening Guide

It has been estimated that half of all American veterans are not collecting the benefits that they earned, simply because they have not applied or their application is not completed. Here's a quick "screen" that can help you pick out some benefits for which you or a family member might qualify; remember that the only way to know for sure is to apply; this page is for general guidance only.

I. General Screen for Veteran Eligibility

• Are you a veteran or the dependent spouse, child, adult dependent child, or dependent parent of a veteran?
• If yes, does the veteran receive any cash benefits or health care from the U.S. Department of Veterans Affairs (VA)?
• If yes, advise the veteran to contact VA to inquire if additional benefits may be available.
• If no, does the veteran believe that the veteran has a disability that was incurred or aggravated by active military service?
• If yes, refer the veteran to apply for service-connected compensation and VA health care.

II. Screen for Pension Eligibility

• Do you have a discharge under conditions other than dishonorable?
• Did you serve during a period of war, such as World War II, Korea, Vietnam, or after August 2, 1990?
• Not counting your home, normal personal effects such as furnishings, and motor vehicles used for normal transportation, do you have resources less than $80,000 ?
• Is your income less than (a certain amount, which changes; check with the VA) after subtracting out-of-pocket medical expenses (be sure to count up these expenses since they make a big difference)?
• Are you (either one or both):
• 65 or older
• AND/OR permanently and totally disabled?
• If yes to all of these questions, contact the VA for possible pension eligibility.

III. Screen for Surviving Spouse Eligibility

• Are you the surviving spouse of a veteran?
• If yes, were you married at the time of veteran’s death?
• If no, stop. No VA benefits are payable.
• If yes, have you remarried since the veteran’s death?
• If no, screen for the veteran’s wartime service, character of discharge, and resources as outlined above and substitute current death pension income amounts for the family’s size. Note that the surviving spouse may be eligible for a death pension even if not aged or disabled.
• Refer a survivor who appears to meet the criteria to VA to apply for a death pension.

IV. Screen for Dependency and Indemnity Compensation Eligibility

• Did the veteran die of a service-connected disability or a disability that VA recognizes as presumptively serviceconnected due to service during the Vietnam or Gulf war or due to prisoner-of-war status?
• Is the survivor currently remarried?
• If no, refer the survivor to VA to apply for Dependency and Indemnity Compensation (DIC).
• If yes, were you remarried after December 31, 2003, and after you were at least 57?
• If yes, refer the survivor to VA to apply for DIC benefits.
• If no, DIC benefits are not available while the survivor is married.

The above is from "What Difference Does It Make if  the Client Is a Veteran? None if You  Don’t Ask About Veteran Status".
When screening, don't stop with the above; always check for eligibility with state and local programs as well. A little bit of time can have a huge impact.

Bus Stop At VA Hospital Lacks Rain Shelter

Bus Stop At Seattle VA Hospital
Lacks Any Rain Shelter

The bus stop at Seattle's VA Hospital has no shelter. Let's hope it doesn't rain much up on that hill. Some of those patients are not in the best of health; it is, after all, a hospital!

Who's in charge of bus shelters anyway?

You'll notice that there is a shelter nearby; it's for the valet service, which is an important feature of the place. Disabled veterans who can drive to the place can drop off their cars at the front door and the valet will park for them. This is IMPORTANT because the parking lot is very big and often full; it would be crazy to require veterans with limited mobility to get from the outer edges to the building on their own ... possibly missing ... feet.

If you're going to have a valet service, you need a shelter for the valets. That's just logic; it's rainy here in Seattle, and workers need to be treated well. 

But a shelter for veterans waiting for the bus is important too. Who do we see about that?

How Long Should You Sit In Your Van With A Broken Leg?

Not Really Where
An Elderly Man With A Broken Leg
Should Sit For 45 Minutes

Last Thursday, a veteran with a broken leg drove himself the Seattle VA Hospital. Since he's wheelchair-mobile, driving with a broken leg was not necessarily as difficult as for other people, but still, getting out of your vehicle with a broken leg is not something you want to do on your own.
When he pulled up to the unloading zone of the hospital, most medical facilities would have instructed him to remain where he was, and sent out a some medical professionals to assess his condition before helping him into a wheelchair or onto a gurney, or to have transported him in some other way.
This didn't happen, according to the veteran. The good news is that that valet service was alert and helpful, and promptly sent one of their number to seek help. The bad news is that help was not forthcoming. The veteran waited forty-five minutes until some non-medical personnel decided to assist him into a wheelchair and then into the facility. Presumably the valets were then able to park his vehicle properly.
There are other problems reported with this incident, but let's stop the story right here. The question must be raised: why was no medical personnel sent to assess the patient? If a patient is at the door and unable to enter under this own power, shouldn't this be a sign that a medical professional's attentions are required? What sort of institution leaves an elderly guy with a broken leg at the door?
Is the problem understaffing? If so, what sort of staffing level is required to see that this sort of thing does not happen again.

I have not given the veteran's name because he's still under the VA's care and I have not cleared this story with him. I have spoken with his wife, who confirmed all the facts above and she gave me many more details.

These questions are not directed in hostility against the facility; these are questions that citizens, taxpayers and veterans themselves might ask so that we can figure out what should be done. If the facility cannot advocate for itself for the ways and means to help an elderly man with a broken leg on its doorstep, then it's up to the rest of us to do the advocating - but first, we need answers as to how this happened.