Today I want to focus on the fact that there is a lack of education in our healthcare system where medical staff is concerned. Specifically with dealing with someone with a seizure disorder. Have you felt that you as a patient are not being heard, or being hurt by medical staff because they do not know what is occurring with you?
I want to talk today about changes that need to occur especially where seizures are concerned in nursing school. I have yet to find anything where it says that nurses are taught about the vegas nerve stimulator let alone how to use the magnet that sets the electric pulse off to help with seizures.
Do not get me wrong, I amend our medical community. I was a cna myself before my seizures became out of control or unpredictable a few years ago. I am wanting to bring the point that I am amazed that curriculum has not been updated to new devices and treatments such as the vns system.
Have you ever experienced this situation? First I was to take a step back and talk for a moment about seizures, epilepsy and how it is connected to cerebral palsy. Most people know that epilepsy is caused from damage to the brain in some form. In the case of cerebral palsy (lack of oxygen) causes the brain damage which, results in seizure activity. Anyone however can have a seizure and they can be dangerous. https://www.cerebralpalsyguide.com/cerebral-palsy/coexisting-conditions/epilepsy/#:~:text=Seizures%20are%20common%20among%20children,which%20can%20result%20in%20seizures.
Regardless the cause or the damage the truth of the matter is that we who live with a seizure disorder need to have assurance that if we need to go to the hospital the staff is going to know what to do, especially, when we have a device such as the vns generator. You all may be asking what is the big deal and why am I going on about this? Here is why. I have a dear friend that also has cerebral palsy and a seizure disorder, she to has the generator and due to unexpected clusters she had a terrible experience in the hospital where she lives. I was appalled that the nurses in the hospital did not know how to operate the magnet not to mention the staff did not know what the problem was. I was very discouraged that they did not have a clue of what to do and had to be taught.
This should not be the case. I truly believe that nurses and medical staff that work on the frontlines should be educated on how to operate and be knowledgeable about new devices like the vegas nerve stimulator. Not to mention to be taught what a seizure looks like. We as the patient need to feel safe and be assured that those caring for us know how to care for our specific needs. Not to assume that their patient is dying and hits them in the chest thinking they are helping us. This is my personal opinion, this is unacceptable and the medical community needs to start teaching their students this stuff.
The medical field is no longer a one size fits all. We do not fall into the same category. Each patient is different and has certain medical needs that the staff needs to know how to deal with. Has any of my readers had this type of experience or treatment? Feel confused, frustrated and not knowing where to turn? We can do our part to bring attention to this problem. If you would like you can start here. https://www.jointcommission.org/resources/patient-safety-topics/report-a-patient-safety-concern-or-complaint/
I am sorry if you or any of your loved ones ever experienced my above true story. For me it is heartbreaking that we in the disabled community have to endure such issues. This goes far beyond cerebral palsy and seizures this problem could occur with treatment for anyone with any disability.
As I mentioned I appreciate the medical community and all they do and are taught, however, I believe these issues need to be resolved and brought to the forefront of the attention to those who teach our medical communities.
Please any thoughts are welcomed so please share. Happy reading & listening everyone!
Living w/ cerebral palsy 