Thursday, May 15, 2014

Successful Patient: Patient Advocacy

Last Saturday, I had the honor to be a presenter at the CCFA IBD Education Conference in St. Paul, Minnesota, better known as "The Patient Summit."  Each spring, the Minnesota/Dakotas chapter of the CCFA organizes a 6-hour conference bulging with informative breakouts and a provocative keynote, this year about genetics and IBD.  For those unfamiliar with "IBD," it stands for Inflammatory Bowel Disease which includes Crohn's Disease and Ulcerative Colitis, autoimmune diseases that affect the human gastrointestinal system.  I presented on communicating with doctors, and sat on a panel discussion on how to support a loved one with IBD. 

By talking about communication, I was talking about being your own patient advocate.  Unfortunately, even when a patient may not be feeling well at all, it's still important for him or her to advocate for him/herself.  He needs to take responsibility for being informed and that means asking questions of his doctor, learning as much as possible about his disease and possible treatments, and then taking care of himself.  This is true even if he has a spouse or significant other. 

My group, however, brought up how important it is to have someone with you when visiting a doctor or going to a procedure.  Another pair of ears listening, another pair of eyes watching, another brain processing the information can be highly beneficial.  I agree.  If you don't have a spouse or a family member who is willing to do that for you, then find a good, close friend who's willing.  Two brains can be better than one.

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Doctors also can talk with a spouse, ask him questions about what he's observed to get another perspective.  My group brought up examples of times a spouse had noticed something the patient hadn't that changed the course of treatment or led to a test that helped identify another issue.  This second advocate only strengthens a patient's position dealing with the medical community.  This is also true for older children.  They still need a parent to accompany them, not only to give permission for treatment, but also to help them learn to advocate for themselves.  How parents deal with doctors model for their children how, as adults, they need to deal with doctors.

Each patient needs to decide for herself how she'll deal with her medical team.  There are professional patient advocates that can also be extremely helpful, if the patient can afford it.  Hospitals usually have someone on staff that can help a patient if there's a problem, also.  It's as important to know what resources are available to help a patient as how a patient can advocate for herself.

One of the things I stressed for my group was the importance of being open to learning, and to educate yourself about your disease.  Knowledge is power.  It's also confidence.  Doctors are an incredible resource for this -- they have acquired specialized education and stay current with advances in medical research in their specialty.  They want to be helpful. Trusted medical websites can also be helpful, but not everything on the internet is good or accurate information.  Check everything you learn from the internet with your doctor.

Being your own patient advocate is more and more important now, and if you have someone who can be your advocate buddy, you're in an even stronger position to improve effective communication with your doctor.....   

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