Patient advocacy. A small rant…

One of the things that I’ve found as a caregiver is that I’m the one who speaks the loudest when it comes to my husband’s care.  Because of this crazy, messed up journey, I have become involved in a world that I barely knew existed – the medical world.  Yes, I went to the doctor before he was hurt.  I knew we had insurance.  I even know quite a bit about science and understand quite a bit about medicine and the human body and all that jazz from my background and my work life.

However, I never knew how disjointed (and sometimes completely ridiculous) the healthcare world is until my husband was injured.  I had no idea how hard it was and still is to navigate “the system” that is in-patient and out-patient care.  I had no idea that rehab is a separate “system” from the rest or that long term care is different than any other care and treated separately with insurance and billing.  I had no idea about any of this until the quad was injured.  And then we were hit with it like a Mac truck.  Holy hell….

I have to sign what?  we have to submit what?  reimbursed for this but not that?  long term disability for how long?  when did short term run out?  what do you mean exercise therapy isn’t covered?  WHAT DO YOU MEAN HOME HEALTHCARE ISN’T COVERED?!

Yes, we dealt with a lot and although very far from pros, we have more knowledge than most.  Because of this, I have decided to get my Masters in Health Policy and Management.  I’m more than halfway through and I feel like I’m just adding more tools and weapons to my arsenal.  I am able to go to appointments prepared.  I am able to talk the talk and walk the walk in the healthcare community.  And I feel like it actually makes me a valuable player in that world.  It also makes me realize that almost all other patients are not valuable players nor are they treated as such…

Patients should be part of the healthcare team.  Patients should be treated as valuable players.  They should be listened to and worked with instead of treated and sent on their way.  Patients go to the doctor since something is wrong and it is up to the doctor to work WITH the patient and vice versa to figure out what is happening.

However, patients do not realize this nor do physicians.  Nor do a lot of other people in the healthcare world.  My husband is an expert with his injury.  As am I.  and yet, neither one of us is consulted during office visits.  Now, he does have one doctor that DOES do this and because of it, his care is phenomenal.  It has created a team atmosphere and has not only caused a better doctor/patient relationship but has also allowed my husband to take greater control of his health.  In the end, that is what the healthcare world wants…  Patients to take control of their health.  Well, if you aren’t listening to them and working with them, then how can they?!

Talk to them.  Patients, talk to your doctors.  MAKE THEM LISTEN TO YOU.  Ask questions.  Bring up concerns.  Bring someone with you to all appointments…   for those in the SCI world, bring your caregiver!  Yes, my husband is an expert but I know all when it comes to his care.  I know all…  I see all…  I have my PhD in caregiving for someone with a C4/C5 spinal cord injury.  I can help bridge the gap in healthcare.  I just need someone to listen.


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