The Frustration of Medical Supply Companies -- and How to Get What You Need

Advocacy is a natural occurrence when you become responsible for the well-being of another person. Be it your child, parent, sibling or someone you care for in a professional capacity, advocacy happens. It just does.

As the advocate for my daughter with health conditions, I am constantly battling with numerous agencies, individuals, government and more to get her what she needs. One specific area of frustration are the medical supply companies we have to use.

These companies are there to provide necessary medical supplies to individuals with a multitude of medical problems. From CPAP machines to feeding tube supplies. These are items you cannot go purchase in a store. Let’s be super clear here. You cannot go to CVS, Walgreens or your local shopping mall to get these supplies.

Unfortunately, we as caregivers and advocates find ourselves in a position of constantly battling these companies. There is always an insurance issue or an order mistake, multiple calls made, hours spent trying to obtain these life-supporting medical supplies.

I can say this with 100-percent certainty: I am not the only one who battles these agencies on a regular and frustrating basis.

My daughter has a rare condition where she stops breathing to the point where she has to be stimulated to breathe again via bagging equipment or stimulating her to breathe again. This is cyclical. It happens all night long, going into sleep, out of sleep and throughout the day. Not much sleeping happens in this house.

With the shortage of in-home nurses in California, I rely heavily upon a pulse oximeter machine, which alerts me when my daughter stops breathing, so I, or whomever is caring for her, can stimulate her to breathe again. She desaturates down to 10 percent at times, which is beyond scary. The machine has a toe probe that attaches to it. This is a Band-aid like device that wears out rather quickly. The machine cannot attach to her to relay her vitals without it.

Seems like a simple item to obtain when out, right? Turns out, it is an absolute nightmare to get these. Try reusing the same Band-aid for a week or longer and having it work. It doesn’t. So, I call the supply company. Put the order in. Don’t receive it. Call back, only get off-shore customer service who can do nothing, absolutely nothing, to help me. Spend hours upon hours upon hours going in circles trying to get more toe probes. This happens every single time I try to get these.

So, I had it. I drove to the local supply branch, which by the way, you can’t call directly anymore, and I ask why I am not getting these. It’s been 19 days and counting. I am told numerous ridiculous reasons as to why I have not received them yet. None of which are acceptable. I ask for them to give me some. They look in the system, and nothing in stock. I say, “Did someone physically go look in your storage area?” Response: “No. Nobody physically got up to look.” I ask them to go and physically look. I then ask where the nearest location is that has them. They have no clue.

At this point, after waiting and going circles in person with the supply company, I’m done accepting what they are not doing to help me. My daughter can die without this equipment. I Google the supply company and their executive officers. I find the CEO’s direct line, and I call it. His executive assistant answers. I explain to her my situation and that this is unacceptable. I am done spending hours upon hours on the phone trying to get the equipment they supply — that they pride themselves on being the best at supplying. I read her their mission statement, which I snapped a picture of off the wall of their branch. I then tell her they are failing at that mission statement. They are failing at what they do. I say I would be emailing all of their senior executives and CEO to notify them of what they are not doing to support their customers who rely upon them for life supporting equipment.

Well, that got their attention.

To make this long story short: I got what I wanted, but I had to fight for it. I had to fight hard and smart. I had to not accept what they were telling me. I had to go to the top — the very top of their organization and bypass all of the others in the way.

What are they doing now? They are creating policy change, using this as a training experience for their staff. And I have the direct line and email of someone who will personally place my daughter’s supply order every month.

I know I am not the only one who battles these companies. When their mission statement includes such things as “providing superior service” to their patients and customers, “setting new standards in the delivery of comprehensive and integrated homecare services,” “being a leader in quality,” “technical innovation and clinical excellence,” then they better be ready to perform when called on it. They did. But… I had to fight.

As an advocate for your loved one, do not give up the fight. Do not accept a scripted response. Be smart and tactful and push until you get what is needed for your person. Go to the top. Go around who they say you have to talk to. It is one of the most frustrating things we as caregivers have to constantly deal with amongst a million other things nobody really gets but us. But you can create change. You can be heard. You can make a difference for others by pushing for what is right.

I fight for my daughter. I fight hard. But at the same time I am fighting for others in a similar situation. Whether it is getting changes made at our local pediatrician’s office, medical supply companies or fighting with the county for in-home schooling, I don’t give up. There are so many days I want to throw my hands up and say, “I give up.” But I don’t, and you shouldn’t either. Take a deep breath, and make the change. You are creating a better world for not just the person you advocate for but for so many others as well.

Get up. Dress up. Show up. Keep being amazing!