Take Charge

Reprinted from PN/Paraplegia News April 2014

Stop the practice of throwing your health into the hands of others, learn about your disability and set the standard of your care.

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A while back, I wrote an article titled You’re Not a Number (September 2013 PN).

In that article I impressed upon you that it’s your duty to communicate what your needs are as clearly as possible so they can be met properly. I have to say that during my last visit to the hospital I was distressed by a few observations, and I’m hoping this is not a virus spreading throughout the entire Department of Veterans Affairs (VA) system.

I’m bringing this up because if this similar trend is occurring in your VA medical facility, then it must be brought to the attention of your local Paralyzed Veterans of America representative. If this is a trend, it must be nipped in the bud.

Anyway, what I witnessed was distressing to say the least. I was sharing a room with an elder veteran of 83 years. He was an incomplete quadriplegic and hypersensitive to boot. He had a simple request and that was to be turned every hour instead of every two.

This request was denied, not by one nurse, but by quite a few. The excuse being that if every patient wanted to be turned every hour it would be too much of a burden on the nursing staff.

Not at Patient Expense

This issue brings up a major counter transference emotion from me.

I was a victim of a lack of turning during my first stay at a trauma hospital. During my stay in the intensive care unit of a hospital that was not the VA, I was placed in a medical coma and not turned for 11 days.

When I was transferred to a VA medical center I had stage four pressure sores in my lower back, buttocks, both lower legs and heels. Had I not been seen by the wound care staff immediately and placed on a course of antibiotics I wouldn’t have survived the next several weeks.

Please note, the transfer report said condition “good.” So when I see a fellow patient not only being ignored, but denied a requested turning protocol, I take notice.

I took it upon myself to inform the patient’s family what was occurring and told them to ask the doctor for a stricter turning schedule.

I was grateful one of the hospital’s caregivers agreed with me and said if a patient requests something, the hospital should take all necessary actions to provide it. I thought that was the protocol, but evidently in some wards they have their own protocols.

I’m noticing policies designed to ease the workload of the staff. I agree that efficiency and safety should be practiced, but not at the expense of the care and comfort of the patient.

Know Who’s Caring for You

So, in light of this situation I’m imploring you to take these actions.

One, read your manual, Yes, You Can. Learn about your condition and make sure your caregiver reads it, too. Secondly, go to the bookstore and buy The Spinal-Cord Injury Handbook. After those steps, you’ll be in a better position to assume total responsibility for your care.

We must stop this practice of just throwing our health in the hands of others because some people may not be as caring about our situation as we might think.

Some folks are just looking for a job with easy hours and great benefits, while some really are there to help veterans. It’s up to you to know which one has your care that evening because they wont tell you.

If you see any request, especially from an elder veteran, denied, find out why. If your grandfather still has his full level of cognition and what he is asking makes sense to you, then find your doctor and make sure his request is provided for.

Caregivers Watch, Too

And lastly, to all caregivers, please don’t believe that because your patient is now in the hospital, your job is finished.

By all accounts, the first few days you should maximize your time with your patient in the hospital, pay close attention to the nurses and doctors and stay multiple shifts so you can see the daytime and nighttime employees.

Only when you’re satisfied with your patient’s care should you leave for a few days at a time. I’m talking from personal experience here. I almost died because someone improperly inflated my catheter balloon inside my urethra and then ignored my calls for help for three hours.

I eventually called my wife and said come to the hospital immediately. There was no argument because she already didn’t trust this particular ward. I felt safe once she was on the scene and not one moment earlier.

Set Your Own Standard

There is a reason why “You are your first line of defense” is the first law in my book, Rules of Engagement. If you don’t take charge of your health, then none of the rules that follow will make any difference.

They are rules of engagement and that means sometimes you’ll have to take charge of the situation and not allow someone else to set the standard of your care. Because if what I witnessed this last stay is indicative of the system nationwide, your needs aren’t top priority, and they should be.


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