Who’s Really On Your Sickle Cell Team?
This week was a sad week for my family because after twenty years, I have decided to transfer to another hospital for the medical care for my 8 year old Sickle Cell warrior. Knowing that everyone on your child’s medical team has your family’s best interest is one of the greatest components. However, when you feel like the respect is lost, no one is listening to your needs; it’s time to remove your family. The way your family survives managing Sickle Cell daily is also a major factor. So know who is on your team constantly because it can change from day to day.
Lack of Trust in your Sickle Cell Team
The Sickle Cell team we were working with had to replace their nurse practitioner and that when it all changed for my family. I would tell her things and she would not take my word for it and this was in every situation. She had no reason to believe I would lie to her ever but from the moment of introduction; she offered me no trust. We continued to no build trust as the months flew by.
I addressed it after our first disagreement and the SC advocate, the doctor and the nurse practitioner all sided together. I started not to trust her either and I also started to feel as if the team was no longer working for the betterment of my family but more so to get paid. At that moment I began to consider, after 20 years at this facility, transferring to another hospital.
Transfusion Dilemma
My daughter was put on transfusions in January of this year. The doctor, knowing my circumstances of living far away and having no daycare coverage for my other children; told me the transfusions could take place overnight on Friday. I agreed and we started this schedule monthly. However, every month the nurse practitioner, in a disrespectful tone, would tell me how I am not being flexible in scheduling the transfusions; how my daughter is the only one getting this special treatment; how I am inconvienencing the doctors and how other who are single moms comply to the outpatient transfusions.
The Last Straw
After 4 months of the same conversation and speaking to everyone on the sickle cell team; I had had enough, so I called the SC advocate. Next I called my insurance care coordinator who both told me how the hospital is bending over backwards for me and my daughter. I was furious because not only was her tone disrespectful but I couldn’t believe they were telling me this. Then to top it off, they threatened to call the Department of Children and Family Services because of this scheduling conflict. That was the last straw.
Filing a Complaint
So let me help those who feel like they have no choice but to continue to receive bad customer service from hospitals and be mistreated because their child needs care. Every hospital has a complaint department. I filed a complaint with that hospital’s complaint department. Also I got the names of the director of nursing, the hospital administrator and the medical board contact information. I emailed my complaint and will follow up by phone as well.
I transferred my child to another hospital for SC care because they said I would have no choice but to work with that same nurse practitioner and I refuse to continue to work with her. Next, I called my insurance and got the information for another SC provider. I called the new provider to find out the steps to transfer. Then I let the current hospital know the plans. Also, I refused to keep discussing my disdain because I no longer wanted my daughter to remain there. We agreed to see the same doctor until the transfer was complete.
Finding a New Team
At no time do you ever have to accept working with a team that has 0% understanding of what you are going thru in managing your child’s SC. Even if you have explained it and they are not listening; you do not have to deal with bad customer service. If you realize your team is not on your side, it is time to select another team.
Some hospitals have more people in the same positions and you can just change the staff of your team. My team was very limited so I had to change facilities. You are and will always be your child’s greatest advocate. Know that and walk in that confidence. Follow your gut and never rush to make decisions. And never talk yourself into staying somewhere that is void of teamwork and understanding of your family’s lifestyle in living with Sickle Cell.
I experienced the same thing with my daughters school. Things were good & we felt fully supported in managing my daughters SC at school and at home. Things changed drastically when the school Nurse took up another position and a different school and was replaced by the most unfriendly, disinterested & rude nurse I have ever had the misfortune to meet. When my daughter mentioned being unwell, she would call me and inform me that she thinks my child is trying to get out school! Its very hurtful when you cannot protect your child from the people who are in place to support them when you cannot be there. Fortunately my daughter only had 1 more year in that school and after I called the nurse out on her conduct she improved marginally.
My daughter is going to Middle school in September and im going to endure that I meet the school nurse immediately to let her know where I stand and what my expectations are from the school as it relates to my child and her SCD.
Just a point to note: both my daughters names also begin with Z. The oldest is completely vlear of SCD but the youngest (11yo) has HbSS.
I recently had a similar experience with my hospital visit. I’m a 26 year old HbSS. I do my best to stay out of the hospital, but sometimes it can’t be helped. In my recent visit Las month. My pain was lingering with the level of pain medications they were giving me. So they called my doctors office and asked what was the dosage that they give me when I go to their clinic. Once they found out the doctors at the hospital told me that they couldn’t give me that much medication on the level I was on because they needed me to be on a monitor while on the high of dosage. I asked if they could move me to the floor that could keep me on a monitor, while getting the appropriate dose of medication. They never answered the question and instead put me on a pca pump, with no higher dosage than I was getting before. When that wasn’t working the put me on me home medications which weren’t working and 8 hours or less they were discharging me. I had a very bad crisis that night that nearly made me go right back to them. This is my first really bad situation with this hospital. Should I give them another chance? Or should I find another hospital?