My dad had a stroke 12 days ago. He is 79 and has multiple medical issues, but this was still a shock. Luckily, it was determined he had a TIA and not a full-blown stroke. When I first saw him 10 hours later, he seemed fine. Looked good, sounded good. He seemed like himself. Then the nurse asked him a question and he responded. The nurse thought nothing of his answer but I immediately knew something was wrong. I asked my dad where he was and he couldn’t remember. He also had no idea why he was in the hospital. He could answer questions about the past but was totally confused with the present. His blood pressure stabilized so the cardiologist wanted to transfer him to a step down unit then send him home. His neurologist determined that there was no neurological issues resulting from the TIA and he would go home soon. The nurse and I both spoke up at the same time and said he couldn’t walk (unassisted) or use his right arm. The neuro looked confused. None of his doctors seemed to be speaking to each other. No one (not even his general practitioner) requested that occupational, physical or speech therapists evaluate my dad. His nurse and I were the ones who pushed for the evaluations (although they did not have his speech evaluated….as a speech-language pathologist, that irked me the most). He wasn’t getting poor medical attention. They were fantastic at the hospital, but the specialists all looked at only their area, while the GP waited for them to make recommendations. Basically, the left hand never talked to the right hand until his nurse and I spoke up. Everyone looked at their specialty area and not at the whole patient. Thankfully because we spoke up, Dad is now in a rehabilitative hospital and getting OT, PT, and SPEECH therapy to help him recover.
Here is another example: My mom was recently was diagnosed with a type of medical issue that required a prescription that cost $950. My parents are retired and on a fixed income. That type of expense was just too much for them and insurance would not cover it. I know that pharma wants to get their drugs to people so I began investigating. I was right, and pharma does have a “program” but it is only for people with regular insurance, not medicare (my parents are both in their 70’s). Eventually, I was able to find a 75% off coupon but by that time my mom refused to get it because she felt 5 pills for $237 was still too pricey for their budget. She continues to struggle with flare ups and symptoms. What bothered me is that no one from my mother’s doctor’s office told her about programs or coupons. Her pharmacy never mentioned it either. How is the average person supposed to access these types of treatments with that cost? Who is responsible for telling them about pharma programs and coupons? This lack of knowledge sharing with patients is a significant barrier to treatment.
Today while visiting my dad at his rehab hospital, I met a nurse who was working with him. She asked my dad if he wanted his insulin in his arm or his stomach. I mentioned to my dad that I give my shots in my stomach because it is less painful. The nurse asked me if I had diabetes too. I replied no, I have RA. Turns out she has lupus. We began talking about all the diagnoses, medications, doctor appointments, etc. Struggling to work just to maintain insurance coverage, etc. She said she was lucky she was a nurse because she knew how to navigate the system but said “We need more patient advocates to get information out there for patients.” She is right….
Receiving the right medical treatment shouldn’t be something only those who know “the ins and outs” of the system get right. Barriers to good treatment range from affordability to knowledge but a lack of communication is the biggest barrier of all. Communication is key, but in a world where time is money, it’s seriously lacking. My advice to patients is to have specialists send letters to your GP after each visit to make sure that everyone is on the same page when it comes to your treatment. Ask for information about EVERY prescription you take especially funding options for pricey medications.
I’m a patient and a patient advocate. Not by choice but due to my chronic illnesses and all the lessons I have learned along the way. Living the “chronic life” has taught me ins and outs of doctors, insurance, hospitals and pharma, but I still struggle to be heard at times. I’m used to fighting for what I need….but fighting for what my elderly parents need…. I’m determined more than ever to be heard. At the end of the day being sick is not an art form. Getting well is…..