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.
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.
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. After 4 months of the same conversation and speaking to all of them; I had had enough. I called the SC advocate next and 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.
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. I also got the names of the director of nursing, the hospital administrator and the medical board contact information. I have drafted my complaint in an email and will be mailing it and emailing it and following 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. I then let the current hospital know the plans. I also refused to keep discussing my disdain because I no longer wanted my daughter to remain there. I agreed to see the same doctor until the transfer was complete.
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.