Who I helped (or who helped me)
I've needed to be "Self-advocating", as well as, being an advocate for both my child/ren and both of my parents. As a parent with many health issues educating myself through research has been crucial.
Describe the challenges you or your loved one faced.
There are too many challenges that have been faced, dealt with, and required immediacy in stepping in, speaking up, and advocating on behalf of myself and others. The issues range from navigating through broken health care systems, facilities, medical providers, HIPPA privacy rules and compliance, receiving services, maintaining services, and the continuous implementation of that which is required by law regarding each and every resource as a patient needing those services whether for myself or family members. Examples: having to get PHI corrected due to extreme errors, or getting coverage transferred inter-county wis
How did you help? (or what help did someone give you?)
Pursued correction to PHI, self assisted. Questioned all medical diagnoses, treatments, or other info for self, child/ren and parents. Being treated with medications that were too strong, ineffective or adverse for the patient, required repeated advocacy with "Speaking up". Eventually, providers worked to modify that which was not working, not withstanding the patient and or families input or determined resourcefulness for quality control in the health area and care within therapeutic, medical, clinical, or other facilities which provided that care. During any and all related Patient driven advocacy for others and myself, while on one hand being empowered by action, the other hand suffering further health related problems and stress due to the severe necessity of taking those actions for getting the care in the first place.
My terminally ill parent however, never got the correct services prior to passing due to errors and inadequate processes, (imagine 63 and only having "birth control" coverage while needing hospice care) Unfortunately, my parents were ignorant to knowing exactly what the insurance (medicare/medicaid) coverage included or actually provided. Which by the way is probably the case for a lot of individuals who are either alone, or without family members to advocate for them.
In caring for myself and my family members advocating and speaking up is how getting assistance has been obtained. This is not to say, that doing so is always well received, responded to, or even provided in timely fashion. It does however, make a difference for being able to take control of one's personal health and wellness, through education, awareness, self representation, resources, and knowing the rights of patients needing care.
Advice
- be sure you understand what your diagnosis is
- be sure you question treatment options and if it is the right fit for you or the patient needing those treatments
- try not to be intimidated if you don't understand doctor talk
- Speak Up when you don't understand what you are being told, asking for clarification in terms you do understand
- always get copies of your testing results for any/all tests!
- seek out patient advocacy groups or patient assisted resources
- do not hesitate to be an active participant in your own or family members health care
- Patients or caregivers have the right to know their rights
