Parent Advocate

I started this blog post about a week ago and it’s been sitting in my draft box waiting for me to finish it. After a message I received today via Facebook from a friend, I had to finish this and get it publicized ASAP!

I’ve mentioned Aunt Beth before, and how absolutely incredible she is. But I wanted to start some what in the beginning of where she comes in and how important it is to have someone there for parents going through all of these medical appointments, too!

When we were still living in Texas, I was with Ryan by myself at most of the appointments. It was/is hard to juggle taking his clothes off, changing his diaper, making sure he was happy at the same times I needed to listen to the doctor and what they had to say about my son, his progress, shots, treatment, “When was his last BM?”, EXHAUSTING! Remembering back, it was hard even when Britney was a baby/younger too! I probably missed a lot of information then…and other than multiple (9) ear infections and tubes, she didn’t have any other medical issues.

So fast forward to when the kids and I move back to Wisconsin – It was then that I realized something was much more special about Ryan – at the time, he’s just over a year old. The therapists made that more clear to me here in Wisconsin.  There were extra quirks and Ryan needed more medical attention. There were things he wasn’t able to do or wasn’t doing that society says he “should” be doing. His therapists actually made me think about it all – and maybe I was more ready to accept it then; which could have very easily come from one of the therapists who wouldn’t stop talking about what HER son was doing..and he was at least a year younger than Ry! My mom was a bit involved and at the house a few times when the therapists were there working with Ryan and we discussed some things briefly. But when his pediatrician suggested a followup appointment with Neurology at Children’s, it started to sink in.

The appointment was made for Neuro and my mom suggested I call Aunt Beth to discuss things with her. She mentioned Aunt Beth going to a few appointments with her and it helped tremendously. I thought, I’ll call her, see where the conversation goes and ask if she would consider coming to the appointment with Ryan and I so I could have another set of ears listening to what the doctors would say. She responded as I thought she would and felt completely honored that I would ask her to be involved in Ryan’s medical treatment.

So since then, Aunt Beth has been an absolutely amazing addition of Ryan’s medical team. She’s been to almost all of the appointments at Children’s hospital and at the hospital at some point during every hospitalization. She’s helped me do research and get questions together that we’ve all had for the doctors. She has a few binders full of information about Ryan’s appointments and the multiple diagnoses Ryan has.

From eHow – I found the following. This stuff is pretty spot on!!

How to Be a Medical Advocate

By Peggy Epstein, eHow Contributor

Being a patient advocate for yourself is something everyone should be prepared to do. However, such a task can become overwhelming (and even impossible) when a person, who is already suffering from the stress of an illness, is bombarded with information and faced with the complexities of hospitalization. Professional organizations can provide patient advocates at a fee; however, there are steps you can take to serve as a medical advocate for a loved one.

How to Be a Medical Advocate

    • Begin by letting medical personnel know who you are, your relationship to the patient, and your intention. Adopt a calm and polite—but firm attitude when it comes to asking for information.
    • Become a human recording machine. During all medical interactions including doctor appointments, lab procedures, and hospitalizations, write down in as much detail as possible, everything that is said to the patient and done for the patient. If an explanation or instruction goes by before you have had a chance to process it, ask to have it repeated.

    • Do extensive research on appropriate medical sites where you can find information written in laymen’s terms. Be prepared to discuss your findings with the doctor; it will help if you have information from well-respected sites. You might start with the National Institute of Health and the Mayo Clinic’s website.

    • Monitor all medications to make sure the patient is not only being given the correct medication but the correct dosage, as well. This is important for home care, but particularly during hospitalization. Do not allow medications to be given without asking what the medication being administered is–and for what purpose it’s being given.

    • Suggest to the patient that he or she talk to others with the same diagnosis or who have had the surgery he or she is about to undergo. Doctors or their nurses will not give out the phone numbers of their previous patients, but they will often call a patient and ask that person to initiate the contact.
    • Find support groups which offer help for the patient’s specific diagnosis. Attend a meeting of such a group on your own at first, and then accompany the patient to further meetings. Many organizations also have organizations for caregivers, as well, and valuable support and information can be gathered at meetings of these groups.

    • Prepare the patient as best as you are able for upcoming procedures or surgery by explaining specifically what will be happening and what the patient should expect.

    • Keep family members informed about the patient’s condition. Coordinate visits of family members and friends so that everyone does not show up at once. Respond for offers of help with specific requests. For example: “Yes, it would be helpful if you could be here from 5:00 to 7:00 tomorrow.”

    • Stay on top of insurance paperwork as much as possible. Familiarize yourself with the specifics of the particular health insurance policy.

So go out there! Be your child’s advocate! They’re counting on YOU to speak up for them…because most of them can’t do it for themselves.


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