The Power of Our Patient Safety Action Network (PSAN)
Networking
The most gratifying and inspiring part of my Patient Safety work is when I can help someone who has been harmed by their healthcare. Although I am a retired RN, I certainly do not have all the answers to people’s questions. That is where my expert patient safety colleagues come in. https://www.patientsafetyaction.org/
Last week a friend asked if I would talk with Jane (fictitious name), who is a friend of her sisters. Jane lives in New York State and had a robotic radical hysterectomy for endometrial cancer. She is 70 years old. Her surgery was nearly 2 years ago, and she is still working on her recovery, with Pilates and trying to improve her abdominal muscle tone. She has come a long way in her recovery, but she isn’t done and 2 years is a long time for recovery from Robotic assisted hysterectomy.
I had the same surgery and it went very smoothly. I recovered in a very short time, and I had no complications or lingering disability. I was operated on one day and I went home the next. I only took Tylenol occasionally for very mild pain. In just a few weeks I was back to my old self.
Jane had a completely different experience, although she planned on one like mine. During her surgery the robot failed. Her doctors exact words were “The f*^#ing machine just stopped working”. As a result, her vena cava (assuming it was her inferior VC) was nicked, and she had a serious hemorrhage. In order for the surgeon to find the bleed, her belly was opened from the bottom of her sternum to just above her pubis. She woke up in the ICU after a 6 hour surgery. She has suffered with brain fog and a number of physical issues that required a lot of rehab and physical therapy. She has a long zipper like scar from the top to bottom of her abdomen, unlike my own 5 barely visible scars. After hearing about her experience, friends advised Jane to seek legal recourse. Three attorneys have looked at her case but have not taken it anywhere. So, Jane did not know where to turn next and she felt very alone.
Obviously, I can’t fix Jane’s problem, but because of my network of patient safety experts in PSAN, I knew who to ask for help.
1. I messaged a PSAN member who is an expert on patient harm data from the volumes of reports to the FDA. She gave me info for Jane on where and how to report her experience. Jane was astounded to learn that there are over 20,000 FDA reports on the Davinci Robot. Jane felt totally isolated with her problems, until she learned about this. Her doctor told her she was the only one he was aware of. That may be true, but she is certainly not the only one in NY or the US! https://www.accessdata.fda.gov/scripts/medwatch/index.cfm?action=reporting.home
2. I wrote a brief email to the Consumers Union Safe Patient Project Email listserve with a brief description of what had happened to Jane and asked for suggestions. This email listserve will soon transition to the PSAN. I got responses from 3 esteemed colleagues.
The first response came from a man who has also been harmed under the Davinci Robot. and he also recommended that Jane report on the FDA website, and to check if her hospital has reported this robot failure to the manufacturer. If not then they are in violation of reporting requirements.
Angie recommended that Jane join the Unplug the Robot group, http://unplugtherobot.blogspot.com/ and sent along the email address of the leader of that group. This puts Jane in touch with other women who have had very similar experiences as her. The group also has information on expert attorneys who handle the same kind of harm that she has suffered.
Then a PSAN member who is an attorney emailed me. He offered to talk with Jane. He told me that there is no class action lawsuit against Intuitive (makers of the Davinci Robot) which was a surprise. He said the robots are used for too many different kinds of surgery to do a class action.
Four amazing colleagues in our network responded to me about Jane’s dilemma over 2 days and I have passed on all of this information to her. I guarantee that she no longer feels alone. There is nothing any more isolating than being sick or in pain, and knowing it is because of a failed device, or a preventable human error. People who have not experienced anything similar are uncomfortable with this kind of conversation and there are no local community support groups. Efforts are made by doctors, hospitals and device makers to keep these things under wraps, and that is even further isolating.
In this quest to help Jane, I have learned so much. This is what our PSAN network does. We learn, we share and we help. We are a family of expert patient safety advocates. The value of that in our Patient Safety work ,our own lives and the lives of those we help is immeasurable.
Thank you.
