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2. Survey Says...

1. What is the single most important advice would you give your doctor?

I am a person with a medical problem, not a medical problem with a person attached. My life involves many more things than blood tests and insulin shots or boluses. I have a job, a family and a life that I have to continue with--my treatment plan should not dominate everything else but should integrate in as seamlessly as possible.

2. What advice would you give your CDE or Nurse?

Forget everything you heard in school or seminars more than two years ago. There is no such thing as a non-compliant person with diabetes. Those you want to label with that term are really suffering from unrealistic and badly planned treatment protocols. Try to live your own life according to the protocol before you demand that a patient attempt to follow it.

3. What advice would you give your Pharmacist or Doctor's office staff?

People with diabetes are long term patients - if we need to get advice from the doctor or pharmacist we should be treated just like a colleague of the doctor or pharmacist. Many times we are asking a question that can be answered yes or no and the answer to the question can keep us out of medical trouble. Don't write us off as cranks/crocks (what the medical staff around here calls patients who are easily dismissed as idiots or drug seekers) without first making sure what we are asking for and what we need. There's a lot of difference between a crank asking for another prescription for narcotics and a diabetic who is afraid of a site infection asking for antibiotics.

4. What is the most important thing that hospital personnel can do to improve the care of diabetics during a hospital stay?

Learn about the condition, pay attention to the little things. We've all heard horror stories about the nurse insisting on giving the patient their insulin (even Humalog!) and then forgetting to give them their food. And everybody is surprised when the patient has a bg crash?

Caregivers in the hospital setting must NOT try to manage the person with diabetes if they are competent to manage it themselves. They should ASSIST instead. The most important thing is to remember that not all people with diabetes are identical and the same stupid practices they've used for forty years are actually dangerous to someone on a tight control protocol.

5. As a care giver, what advice would you give your medical professional about your involvement in the treatment decisions of your child, parent or significant other?

Listen, listen, listen. Share information, be willing to answer questions even if they don't seem to be immediately obvious and listen, listen, listen. Then think about how you would react if it was your family member who was being discussed.

6. From an emotional/mental/spiritual standpoint, what can medical professionals due to help you improve your care?

Remember that all people have value as persons. Respect their emotional states and recognize that diabetes causes emotional, mental and spiritual trauma in addition to the gross physical effects. Be quick to recognize symptoms of depression, moodiness or anger, and be willing to guide the person to seek counseling or help from a professional who is experienced in dealing with people who have a long term medical condition. Never say, "it's not that bad," to a patient. At that moment, for that patient, it IS that bad. Make a list of resources in your area that can help, from the hospital chaplain and local ministers to the mental health agencies. Help your patients understand that it's not bad to seek help - it's bad not to seek help with these kinds of problems. They are not alone - and as a professional it's part of your responsibility to make sure that they recognize this.

7. What was your single absolute worst treatment nightmare which could have been avoided through better care/education/thoughtfulness on the part of the medical professional?

When I was in the hospital being trained on MDI, about 14 years ago, the nurse came in and demanded that I take my shot. It was thirty minutes before mealtime and Regular insulin had to be taken before the meal. Then she left because she was working a split shift. The duty nurse who came on assumed that the first nurse had brought my food to me. An hour later when I called and said I needed my food because my bg was around 45 she began trying to get the tray delivered - but it had been taken back because it had sat at the nurses' station until the pickup time. I called again and the nurses finally got some crackers and milk - but by that time my bg was about 25, I had a splitting migraine as I usually get from a low, and I was shaking, my temper was getting ready to detonate and I had eaten every sugar tablet that I had in my room. I was demanding to see the charge nurse, the doctor, the ombudsman, the nursing supervisor and the director of the diabetes center. Finally, they brought the food--almost three and a half hours after I had taken my shot.

The sad thing is that this type of incident happens with regularity at most hospitals...

8. In one sentence, how would you describe the effect diabetes has had on your life and the lives of your family?

Not good. It has prevented me from continuing my education because if I don't have the medical insurance from my employer we go bankrupt. I have been unable to do many things because I've had to eat, maintain a schedule, and always have to carry a ton of junk with me. Since I've gone on the pump things have improved a lot, but there's still that pile of junk and my wife is fearful of letting me drive a long distance by myself or go sailing without a crew. She's always worried when I travel, because she's seen me at my worst when my bg crashes and is afraid of what could happen if I'm in a strange place and that happens.

My five year old sons know how to do a bg check, and have even asked me to check them. One of them has been talking about how his friends' fathers don't have medicine boxes. He's quick to notice when we run into someone else who has a pump and he gets excited because there's someone else who has a medicine box like Daddy. My children have also learned to offer me food if I start acting oddly. I don't like the fact that my children sometimes have to take the responsibility of taking care of me by trying to determine if my bg is crashing...

--Rev. Randall Winchester

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