By Ellen Lenox Smith.

Last September, I would confront the first of nine life threatening events that led to my 24th surgery, a second neck fusion surgery. In January, 2018 when the first event happened, I eventually became catatonic and was taken to the hospital. My oldest son and daughter in law stayed with me as efforts were made to contact my husband. Upon arriving at the hospital, my blood pressure was down to 80/38 and medical staff could not get me to respond. They transferred me to a stretcher from the rescue chair and failed to listen to my advocates description of my condition, which resulted in the dislocation of my hip, the one joint I had never had a problem with. To this day, that joint remains an issue. I must always be cautious with any motion involving this joint due to permanent damage done by the medical team responsible for treating me on that fateful day. The ER doctor ordered an immediate IV of fluids, around 9AM. That IV was not started until my formal admission to a hospital room around by 7PM. Having failed to follow the most basic medical procedure relative to low blood pressure and the bodies need for fluid, I would remain relatively unresponsive for many hours. During all those hours of horror, very little was done to try to help me and at one point, my son was told by a nurse that it appeared I was gone. And for the two nights, three days admitted, no one ever listened to me explaining meal after meal that due to Ehlers-Danlos Syndrome, I had a limited diet and could not eat items on any tray I received. I needed to get discharged and home to safety.

I am sharing these details, so you know how upsetting this incident was and understand how angry, humiliated and distraught my family and I were. However, when you read how I handled this situation, you may not agree with the angle I used but please at least read this before you judge my method and understand that my approach would, upon request to the hospital administration, lead to me providing an in-service to the ER doctors and nurses.

I needed to channel my emotions of outrage and anger. I would not simply let these emotions fester and affect me negatively. My hope was that by educating hospital staff, future EDS patients might avoid the mistreatment I had experienced. My experience has taught me that sometimes method is as important as message. I have found that how one comes across can make a huge difference as to whether you get a response and respect for your message. Expressing one’s anger and disgust only, without promoting substantive solutions, has not been a successful way for me to be given the opportunities to be listened to.

So, what path did I take

I remembered our former RI Senate President had changed her career to be the new head of the hospital association. So, I called her new office to get her contact email but instead, she picked up the phone. Although she was not the person in this circumstance to help me be heard, she suggested, hearing the story, that I write a letter to her and she would send it to the appropriate person at the hospital.

I composed that letter, sharing even more details than I shared with you, and made my focus two things: 1. That this should never happen to someone else 2. That I was offering to provide an in-service to help educate and prevent future damage to others, sharing that I have done various presentations such as those for Blue Cross, EDS Society, Brown Medical School, testifying for the FDA, and for our local government. And if I could not be that right person they would like to do this, I would help them find a good spokesperson to educate them about my condition.

Instead of only expressing anger and disgust, I tried to keep my words civil and written in a way that they would take the time to finish reading the letter and think about the extent of the mistakes made by their staff. If you think about it, when someone approaches you and is very angry, even when totally justified like I was, and they go on and on about it, you tend to want to pull away for that stress gets absorbed into you. You may not agree with this process, but I find it is more effective to keep your cool, share the truth but keep it all in a tone that may lead to moving forward together instead of totally turning them off.

Before I knew it, the former Senate President, now hospital president, did send my letter off to the hospital to the “Services Excellence Specialist” spokesperson. I received numerous phone calls from her, a letter of apology along with discussion about setting up a date to do the in-service.

That in-service did happen the month before my neck fusion, last December. Since that time, this same person has been the main go-to person to connect with and she continues to work with those coming into the hospital with this condition. Those that have submitted complaints during their stay now have her on their side helping to resolve the issues that arise.

If you find that connecting with the right person to listen to your issues is not working, consider contacting your local state representative and/or senator and if that doesn’t help, then pick up the phone and call your legislator. Although they may be in DC, they have a full staff in your state that can listen and act to help you change these damaging medical practices and policies for the future.

Remember – take a stand when you are wronged:

Make the call or write that letter – but try to express your concerns in a proper tone they will want to respond to

Include that you look forward to their response

Include ways to educate them to help prevent this happening to another person

Consider emailing or calling if you hear nothing back to be sure they received your message to them

And if you get no response after a good week, call their office and ask where you stand

If that does get no response still, then consider first contacting your local state senator and/or representative

If that doesn’t get results, then contact your federal Senators/Representatives

None of us want to be mistreated. So, let’s work hard to take all that horror and emotion and turn our unfortunate, inappropriate experiences and treatment around, in hopes of helping the next person and ourselves in the future. Try hard to learn to speak up, be appropriate respectful, and tactful when you express your concerns and offer any options as to how you might help educate others to try in eliminate the horrors that happen all too often. To this day, I am still afraid to be sent to the hospital for an emergency due to the horrible experiences I have had living with a condition often unfamiliar to many in the medical profession. Recently, when I desperately needed IV fluids, I didn’t allow myself to be taken to the hospital. I was too afraid of being hurt again! I did call that person I have been connected to ask what I could do to overcome this mistrust and concern of being mistreated again. She looked my name up in the computer and what popped up immediately that goes out to all the hospitals in my state is a warning: Handle with Care with transfers and touching – Ehlers-Danlos Syndrome. Let’s hope that this warning in my chart now alerts the next people dealing with me to ask and learn what they don’t understand.

May Life Be Kind to You!

Ellen Lenox Smith

Author of: It Hurts Like Hell!: I Live With Pain– And Have a Good Life, Anyway, and My Life as a Service Dog!

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of National Pain Report.

Ellen Lenox Smith and her husband Stuart live in Rhode Island. They are co-directors for medical cannabis advocacy for the U.S. Pain Foundation, along with Ellen on the board and they both also serve as board members for the Rhode Island Patient Advocacy Coalition. For more information about medical cannabis visit their website. https://ellenandstuartsmith.squarespace.com/

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