The other day I met a man in a Nursing Home in New York. He is a department head in the facility and my class there has nothing to do with diabetes. We were just talking about the course I would be teaching and he asked me about my background and naturally AADE came into the conversation. The whole discussion changed and it reminded me that where ever we go, or what ever we do, diabetes cannot be left behind.
He told me about his beautiful two year old niece who had just been diagnosed with type 1 after an emergency experience in the hospital and how overwhelmed his brother and sister-in-law are. He spoke of the horror of the experience and said that although everyone was caring and kind they really did not seem to know what to do to help this child and her family cope with this diagnosis and the life changes that would occur in this young family.
When I asked if the family had been connected to a diabetes educator he said no and that they had not been informed that such people existed. I asked if the physician had referred them to a pediatric diabetes center and the answer was again negative. At this point I had to control my own anger and frustration that some health care providers had let this terrified family leave the hospital without a plan of action and the beginnings of a support system. How unfair and indeed dangerous this was.
Although the parents had been taught by someone to test the baby’s blood and how to inject insulin that was the limit of their education. No dietitian had seen them nor had they talked to a pediatric specialist or advanced nurse practitioner. No one had agreed to speak to other members of the family, including grandparents in acute distress and anguish. The parents were taking turns sitting at the baby’s bedside each night afraid to leave her alone for fear that she would go into ketoacidosis or hypoglycemia.
Now before you panic please know that I connected them to a pediatric diabetes educator at a medial center near their home and they have made appointments to see all the people they need to receive help. I could not return home without finding resources for them and sleep nights, but I am still angry.
At this stage of health care delivery in the United States why is this situation still occurring? Diabetes Care has advanced by leaps and bounds in the past ten years and we have educational programs everywhere for health care professionals. Pharmaceutical companies and major associations spend millions of dollars yearly to educate all levels of professionals and paraprofessionals in the advances in diabetes care. People will even visit you in your office and offer the staff free programs, often serving lunch as a free incentive, and yet patients are still under educated and sent home to try to adjust to diabetes with little or no assistance.
We estimate that less than 10% of patients who are diagnosed with diabetes are seen by an educator. Shocking?
Well what can we do? A major advertising campaign to reach all health care providers is necessary and is in the planning stages but what about our responsibilities?
We need to keep ringing the bell and pushing the concept of the patient’s rights to education. We need to believe that we can make a difference.
A pair of great educators, Betty Brackenrich and Kris Swenson teach their patients about the little girl who is standing on the beach surrounded by Starfish. She is throwing them back into the water one by one when an adult asks her what she is doing. She says the starfish have been washed onto the shore and will die if they are not put back in the water. The adult laughs and says there are so many, how will you save them all? The little girl picks up a starfish and tosses it into the sea and looks at the grown person and says “At least I saved that one.” Thank you Betty and Kris. You are both inspirations.
As I sit here looking at the sea full of starfish I have to remember…
One patient at a time.
Happy New Year!
Ginger Kanzer Lewis has been teaching people with Diabetes for almost thirty years. She is a Registered Nurse with a Masters Degree in Education from Harvard University and Certification in both Diabetes and Continuing Education and Staff Development. Ginger has spent over twenty years teaching educational methodology to health care professionals while working as Director of Staff Development or Education in Hospitals through out the North East. Ginger is the immediate Past President of AADE and is a well known national and international speaker.