My Rights As A Patient

I'm excited to have guest bloggers as I continue to recover from a serious accident. Continuing on the theme of self advocacy Nicole in Australia writes about her desired
rights as a patient.--Allyson

My Rights As A Patient

My right to knowledge inclusive of the big words, the ups and downs and the real facts good and bad.

My right to have you care for how I feel just as much as give me a diagnosis or a treatment plan.

My right to hear to say you have listened to my reality and value this as true knowledge.

My right to a treatment plan that places me in the drivers seat.

My right to say I am scared, anxious, frightened and that I don’t know what to do.

My right for you to know I am here in need of your help to find me some answers.

My right to details, results and explanations as they are discovered.

My right to ask questions, lots of them and for you to do your best at answering them.

My right to know and fully understand my problem is in my body not “all in my head.”

My right to be heard by an attentive and understanding professional who chooses to seek understanding by looking behind my silence, fear, tears, pain, anxiety, behaviour or frustrations to really hear what I am saying.

My right to disagree with how you have treated me.

My right to walk away and seek further advice.

My right to be treated with respect in treatments despite me asking you the same questions, results that keep coming back normal, presenting to you with the same symptoms or having no reaction to medications given.

My right to have you treat me as a person and not just a patient.

My right for you to understand that you can make mistakes and that it is my responsibility as the person seeking treatment to call you on these.

My right to hear that you don’t know what is going on either.

My right for you and I to work as a team.

My right for you to tell me that you see that I am frustrated, anxious and in pain and that you will help me by taking me seriously.

My right for you to know the minute I leave this space my experience continues.

© Nicole Fernley

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Question Everything!

Today I went to my family practitioner as a follow up to my head and neck injury. I learned why I have not been able to write a post since the short one after returning from the hospital. I look at a page and stare. That does not happen to me often. I usually find something to say either if it's face-to-face or in writing, maybe not profound, but something.

"Do you feel you've had a loss of cognitive functioning?" the doctor asked.

"I know there is information I should know, but I can't retrieve it. Also, I've tried to keep up my blog, I have nothing creative to say."

"Seems like you've had a loss. The sheer fatigue form the injury and the pain can cause that response too," the doctor said. "What's hard is you look like you are tracking, but I see now that you are not following everything I say."

My warning to my daughter's personal care attendant (PCA) when I returned home was, "If something I say seems off--question it--question everything!" Her chuckle reminded me that I had asked her to come an hour earlier for work than I had intended that morning.

While in the office the doctor went over all of the reports from the hospital. I had already been to two doctors and had a list of tests to schedule. I asked him to check on an ultrasound that was ordered on my liver. Neatly typed next to it was a finding that no one had told me about AND I clearly remembered no one had told me. There were also clear directions to get an ultrasound on both areas--"sooner than later."

Of course after determining a loss of my cognitive functioning I knew that my doctor may not believe me when I told him that I could clearly remember that no one told me. "Check the discharge orders," I sort of commanded. "Does it list it there?"

"No. There is nothing here. They missed it. I really don't think they are going to find anything serious though," he tried to comfort me.

"But what if they do? Or what happens with another patient when a doctor forgets to include the order and doesn't mention the finding to the patient?

When I was in the hospital my husband was home with my children much of the time. I was left as patient and advocate while on significant doses of pain killers. As advocacy is my passion I forced myself to focus, pay attention and question everything. No matter how much I did it obviously was not enough.

After my appointment my doctor "released" my medical records. Now I can read them on-line and while I can't review them all at once without fatiguing, over the next couple of days I will read every word. I quickly noticed two other things that were not accurate.

When I said "question everything" to my daughter's PCA when speaking with me, I said it laughing at myself knowing that I may not be completely accurate right now. But when I say to you as one advocate to another "question everything" when it comes to medical reporting it is no laughing matter.

--Allyson

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