Have you ever experienced a #WhatTheHeathcare moment on your patient journey?
We’ve teamed up with HealthSparq for the What’s The Fix conference to brainstorm ways that we can fix healthcare together!
Joined by the following Patient Leaders, our June 2017 #WEGOHealthChat focused on discussing #WhatTheHealthCare moments and highlighting how our network has circumvented the system to find their own fixes. If you were unable to make it to this #WEGOHealthChat, we posted a recap HERE.
The following are examples of Patient Leader’s #WhatTheHealthcare moments and the fixes they’ve identified.
My most recent #whatthehealthcare
moment was looking for individual health insurance. When the insurance company got the information that I have epilepsy (pre-existing condition) I was going to be charged $545 a month. Yes, a month! Seriously? I have gone the better part of 2017 with no coverage since my doctors were not covered with Obamacare.
I now am covered with my job. But this should not happen to anyone else. Sadly it happens every day, across conditions, across the US. My hope is to continue to fight for those with pre-existing conditions so they can get affordable healthcare at any time.
My #Whatthehealthcare moment: A few years ago, I went to my primary care doctor at the time as I had a very uncomfortable bump that I was concerned might be an abscess. He pushed all around it and such. He literally laughed in my face and told me this was a pimple – and that I should not have wasted his time. I didn’t react, he said, as if I was in pain. When I pointed out that I’ve been in chronic pain for 20+ years, he thought I was exaggerating. He told me to take my biologic medication as scheduled. The following week, I saw my rheumatologist’s NP and she immediately recognized this for what it was, prescribed me an antibiotic, and helped arrange a dental visit for me. She also set up a follow-up sooner to check out how things went – and got me in with her primary care doctor to establish care.
The #WTFix solution? We need to include patients as experts in their own care. If my concerns had been taken more seriously, I would have been saved a few weeks of pain from the abscess itself and holding my medications. Had I just gone with the idea that the doctor at the time knew my body more, as many have, I would have gotten very sick and likely needed hospitalization.
My docs saw an improvement in my dystonia symptoms, largely in part to the work I was doing on my own, so they took me off my meds and did so very rapidly. Within a month I was having very bizarre symptoms. They thought it was side effects because I had lost around 150 pounds (secondary issue to my main one.. dystonia) and that I was taking too much… foolish! Symptoms got even worse so we stopped the taper. I really jumped into research mode while barely able to sit stand up from being so sick and weakened from the rapid withdrawal, I discovered I was in benzodiazepine withdrawal.. for 2 years! I was sicker than I can ever recall, at times even worse than the unrelenting pain from dystonia.
After figuring it was withdrawal, I did more research about how to build up the damaged neurotransmitter system from the withdrawal, sought out a doctor who understands the nature of the medication, and then stabilized my symptoms prior to starting a proper taper. I got in touch with some of the leading experts around the world for their input as well. I had enough of the morbid obesity so I changed my lifestyle back to the healthy one it was prior to dystonia. Within a year I lost all the weight and reduced my dystonia symptoms in half. No weight loss pills, special diet, or any intervention at all. It was all on my own and my docs merely marveled at the transformation rather than playing any role whatsoever or even seeming to care. Took myself off blood pressure meds and now my bloodwork is better than most patients my doctor sees.
The very first time I went to the Emergency Room for a psychiatric emergency it took over 6 hours to be checked in, seen by a doctor, and admitted to a room. I was suicidal, delusional, and very depressed and the process was overwhelming. I was scared and didn’t know what to do. The entire process would have been difficult to manage if I were well, but trying to manage it while sick — and not in my right mind — was nearly impossible.
In a perfect world, we would have social workers, psychologists, and psychiatrists on stand by to see people quickly. But, we don’t live in a perfect world. My solution would be to engage the services of certified peer supporters to sit with psychiatric patients while they wait and help keep them calm and explain the process. The buddy system works and Certified Peer Supporters are less expensive and more plentiful than other mental health workers.
Have you experienced your own #WhatTheHealthcare moment(s) during your health journey?
We’d urge you to share your challenges and solutions by adding to the comments below and posting on social media using #WhatTheHealthcare and #WTFix.
Let’s all raise awareness and help change healthcare for the better, together!
And don’t forget! 2017’s What’s The Fix Conference may be over, but you can still view the inspiring content here and jump in the conversation over on Twitter.
Jackie Zimmerman is the Patient Leader Network Manager for WEGO Health. She is also an ulcerative colitis patient and the founder and Executive Director of Girls With Guts. Since diagnosis, she has been blogging her IBD journey at Blood, Poop, and Tears.