From a home care nurse in Carson City, Michigan, USA:
I am 44 years old, and have type 1 diabetes, diagnosed at age 11. I would like to know why health professionals feel they need to manage diabetes, and seem to be against empowering their patients to manage it. After all, there is only one person who deals with it 24 a day, seven days a week, and that is the patient. Diabetes seems to be almost a control issue between the patient and the health care professional. Unfortunately, when it is dealt with in the wrong way, only the patient suffers, not the health professional. Why do we not empower the patient?
I think that until probably 10 years ago, you were right on by saying that health professional had to manage the patient's diabetes. We have been enlightened, though, so that we understand how important the person with diabetes is to determining what they can and will do for their diabetes You sound as though you are frustrated with your own health care team not recognizing you as the most important link, so I hope you can share this information with them.
Additional comments from Dr. John Schulga:I am sorry you feel this way about health professionals. We are not all the way you describe. I look after children with diabetes, and my main aim is to ensure that the children and their parents know as much about their diabetes as possible. I think you will find that this is true of most professionals who specialise in dealing with diabetes. It is a sad fact that sometimes people with diabetes find it very difficult to look after their own diabetes, and, it is in these circumstances, that the health professionals need to do a lot more of the care that perhaps they would like. If you feel this way about things, why don't you try to talk this over with your diabetes team? You may be able to get this sorted out.
Additional comments from Dr. Tessa Lebinger:I think most good diabetes providers understand that they only provide education and recommendations and that the patient is the one truly "on call" 24 hours a day, 7 days a week. I think most health care providers know patients usually modify their recommendations. Hopefully, we as health care providers can use our experience with a large number of patients to guide individuals to help discover what works best for them (and help them learn how to figure this out on their own). Since every patient with diabetes has different, changing needs, health care providers are still necessary to give recommendations based on their experience. I think Elliot Joslin was a pioneer in the early part of the 20th century to have the idea to educate patients to learn how to manage their own disease (before the availability of home blood sugar monitoring).
Additional comments from Dr. Stuart Brink:Read books and articles by Cathy Feste, Bob Andersen and Martha Funnell. Perhaps they will enlighten you, give you some ideas and help with the frustration I heard in your question. You are exactly right, of course, but empowerment takes time and effort on part of health care providers as well as patients and family members. There are problems with all sides of this triad. Don't give up, though!
[Editor's comment: Unfortunately, what you say is true all too often. Many healthcare providers who take care of people with diabetes are still using a medical model which tells them to fix something instead of using a patient empowerment approach.
Dr. Luther Travis once said that diabetes management is a partnership in which people who have it start out as junior partners. Their self-management responsibility increases as they get training, and demonstrate their abilities. Eventually and ideally, people with diabetes grow to be senior partners with the rest of the diabetes team acting in a consultative role.
As you can see, the members of the Diabetes Team here at Children with Diabetes are very much in favor of patient empowerment. That is precisely why we started this section. It is our hope that people who have frustrations such as yours will take the information we provide and share it with their diabetes teams. In this manner, we can all educate the "controlling" types of healthcare providers to "let go". SS]
Original posting 30 Apr 2001
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