Education and Advocating for each patient

One thing that I and others who are affected by serious illness must learn is the importance of education about not only the disease, but also of the various treatment options, possible side effects, long term prognosis and maneuvering the healthcare system. The last part also includes the ins and outs of insurance, which can be a full-time job. It is quite daunting at times but so very important to the proper care of your loved one.

In the case of Autoimmune Encephalitis (AE), many patients are not able to advocate for themselves as they are impaired medically. AE causes an inflammation of the brain and is essentially an Acquired Brain Injury (ABI). For this reason, it is critical that those affected have a loved one who can assist with their care, attend all doctor appointments and keep good medical records to ensure that the patient is following the protocol that the doctor prescribes.

Illness is a very stressful time for the patient and for those who love them. The role of the caregiver is not only to provide daily care for the patient but also to advocate on their behalf with medical staff and insurance companies. As you determine the best person for this, please consider some of the following:

Select a person whom you trust
Decide how much help is needed, and what you would like to handle on your own (if able)
Medical records
Prescriptions and dosage
Appointments and testing – follow up
Let your medical staff know who your advocate is, and how you would like them involved in your care
Make sure that medical staff and insurance companies have your advocates contact information

Proper documentation is so very important for a few reasons, there are the HIPAA laws that affect each patient, and in our case, we are not legally married or related, which causes a new level of complication if we don’t document the patient wishes. Be sure to document everything so that you can act on the patients’ behalf when needed.

It is becoming quite clear that AE is still quite unknown and many times misdiagnosed, which only makes the need for a patient advocate that much more important. To have someone who can question the care if they feel the need, to ensure that their loved one is seeing the best possible doctor, and ultimately getting the best possible care.

As the caregiver and advocate for my loved one, I wouldn’t have it any other way. I am honored to be able to work with the medical professionals as we ensure that he is getting back to health and living the best life that he possibly can.