PATIENT ADVOCACY- WHAT DOES IT MEAN TO ME?

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A patient advocate has to have the tenacity of a bull dog, a sharp and creative mind and the quick and practical resolve of our pilot-hero Captain “Sully” Sullenberger.

Here’s a case showing you what I mean:

Carrie is a 52 year old business owner living in Northern B.C. She developed severe headaches. The CT done in the local hospital showed fluid collections inside her head. She went to Vancouver to see a neuro-surgeon. He did a MRI which showed the fluid collections. He decided to wait and see.

Carrie was concerned and retained Rupert Case Management (RCM) for a second opinion. She couriered her imaging studies to us. We sent them to one of the top neuro-radiologists in Canada. He was intrigued by the studies and had a case conference with several neuro-surgeons. They concluded that she likely had an active CSF/fluid leak in her spine.

When I tried to speak to Carrie’s neuro-surgeon, he was evasive. He did not respond to emails or calls. He had booked Carrie for a brain operation on Monday.

When I finally got him on the phone on Friday, he was dismissive and abrupt.  He had to agree to read the email from the neuro-radiologist which suggested a spinal MRI.  He admitted Carrie to the hospital on Sunday for the spinal MRI and the operation on Monday morning.

When we got the news that the Vancouver MRI showed the spinal cord leak and that the brain operation had been cancelled we were thrilled for Carrie and her family. She had the leak patched through a lumbar puncture and flew back home.

So that is what a patient advocate should do. Unfortunately, doctors do not know how to react to an advocate. They will rarely talk to an advocate. Often the response is adversarial.

If the doctors would agree to listen and to at least consider the information provided especially if the second opinion is from a credible authority, then everyone including the doctors will benefit from this collaboration.