Finding your voice when your care goes from bad to worse

In 2011, I lived in New Mexico and was navigating the challenges of law school, as well as ongoing pelvic pain (which, at that point, I was simply ignoring for lack of available care).  Facing mounting stress, I started developing GI issues (big surprise, right?). So, I made a doctor's appointment (crazy idea, huh?).

I wrote this letter to the hospital's patient advocate after my appointment that day.  It tells the story from there.

Dear Patient Advocate,

This morning, I was seen by Susan B., P.A., at your Gastroenterology Clinic.  When I made this appointment a few months ago, I requested an appointment with a gastroenterology physician.  Only when Ms. B entered the examination room did I learn that she was a physician’s assistant, not a physician.  I made this appointment in an effort to remedy ongoing digestive problems, including nausea and vomiting.  As a graduate student, these problems have been interfering with my ability to focus on school.

Ms. B neither explained nor addressed my symptoms; she instead provided the least sympathetic, attentive, or useful care that I have ever received.  Additionally, I documented in my intake paperwork that I experience hormonal migraine headaches which coincide with my menstrual periods.  I relayed to Ms. B that my migraines were long-ago determined to be hormonally related, that the nausea did not coincide with my migraines, and that I had not suffered a migraine headache in more than five months (since changing contraceptive methods). 

Based upon this information, she opined that I may have an undetected brain tumor. 

She asked if my PCP or OB/GYN had considered this diagnosis.  I told her they had both recommended that I see a gastroenterologist, which landed me in her office. She could not suggest any alternative reasons for my symptoms or provide information that might be helpful in managing the symptoms, and she instead suggested that I try multiple medications. 

I told Ms. B that, as an active and busy 25 year-old, I would prefer information, a diagnosis, and lifestyle changes to multiple medications.  I shared that I want to remedy the source of the problem; she said that extensive testing would be necessary to provide any diagnosis.  She ordered a colonoscopy, endoscopy, labs, and other tests.  When I asked if the cause of nausea and vomiting is typically detectable with a colonoscopy, she said ‘no’ but that she wanted me to proceed anyway.

She surmised that a nearly microscopic endometrial growth removed from the external wall of my colon during gynecologic laparoscopic surgery several years ago may have instead been a cancerous mass. 

She did not consider potential food allergies or my stress level.  Finally, why didn't her concern that I have brain tumor or misdiagnosed cancerous mass prompt her to order any neurological tests or scans?

This experience with your facility and this practitioner today was extremely negative.  Ms. B made me anxious about an otherwise very routine problem, and she did not provide any guidance to help me manage my symptoms.  Moreover, she was unable to schedule me for any of the suggested tests until at least September, which is six months away. I already waited several months for today’s visit.  I left your practice today feeling helpless about remedying this problem and very frustrated about the astoundingly low level of care which I received. 

I am thus requesting an immediate appointment with a gastroenterology physician who can provide me with the attentive care that I have come to expect from your practice. 

So, share your thoughts! What do you do when you have a horrible appointment?  When a provider doesn't hear you or doesn't help you?

This visit was particularly egregious and, I hate to admit, was the only time I actually mailed a letter to a practice's patient advocate.  I'm excited to hear how you handle these situations!