An open letter to my healthcare providers

It's hard enough to have to struggle to live with a disease like ALS without having the frustration of dealing with insurance companies, health care providers and medical device providers. In my experience over the last seven years, I have found that these types of companies are huge bureaucracies with little empathy for the patient or caregiver. When you need help at the most vulnerable time, it's impossible to get coordinated care, direct answers and decent service. The main purpose of the person on the other end of the line, or e-mail trail, seems to be to complete their own paperwork or obligations for their job. After all, they must be able to meet the regulations forced upon them by insurance companies and the US government in order to be paid. The patient's welfare is secondary.

I'm prompted to write this post, this open letter to Kaiser Permanente and Apria, because of today's events and many past frustrations. I have little power against these enormous organizations, and little hope of getting satisfaction or creating change, but my words are my only weapon. I will post this letter on my blog, as well as send copies to the above mentioned organizations.

My letter is divided into two sections, one for each organization. I apologize for the long nature of this post/letter. I have a lot to say...

Kaiser Permanente, Honolulu, Hawaii: I believe full disclosure is necessary here. I used to work for Kaiser. I love the organization. I am very grateful to the doctors and nurses that have cared for me, and that I had the pleasure of working with. I list just a few of the most pertinent complaints that I have – I do not list the boatload of compliments.

When I was first diagnosed with ALS, Kaiser had a program called Palliative Care for which I was eligible. This was an excellent program. It allowed for extensive home care. The program was great for me because I have no ambulatory ability – getting to the clinic was a major expense and hassle. I was eligible for bath services once a week, once a month a nurse came to visit me, and once a quarter a doctor came to my apartment. The focus was on preventive care. The premise was that it was cheaper to keep me healthy at home, rather than having me get sick and be admitted to the hospital. Great program, right? Within a year, the program was canceled. I was offered no other options, except to now go to the clinic for care. I wrote the president of Kaiser Permanente Hawaii a letter supporting the doctors and nurses, the program, and their care. I asked her to consider reinstating the program. I never received a reply.

Last year, my coverage inexplicably changed. I am grateful that I have coverage, but the change was unannounced and quiet upsetting. My primary insurance was changed to Medicare, rather than the Kaiser Permanente employee insurance that I had been using for years. This resulted in a bill of $6000 from the medical device supplier utilized by Kaiser – Apria. Of course, we did not pay this bill, but we did have to make several calls to both organizations to get it straightened out. It created a lot of unnecessary anxiety. Finally, six months later, everything was rectified. Shouldn't Kaiser be required to inform its members when a billing or a coverage change is made?

I have been trying for almost a year now to get my hospital bed mattress replaced. When I first received the hospital bed, the mattress that came with it could not support my 200 pound body. I was not obese enough to qualify for the more supportive mattress, but my doctors were able to get me a very good mattress with memory foam that supported me very well and was also reported to prevent bed sores. Great idea, since I've been spending 24 hours a day in bed for the last four years. I've had no bedsores. The mattress is now starting to sag, it's getting old. I have been trying to get a new/replacement mattress for several months. My doctor has been in helping, but she has not been successful. I've been told that now that I have Medicare as my primary insurance, I am not eligible for this same type of mattress – one that prevents bedsores. In order to get this type of preventative mattress, I must already have bedsores! Does this make sense to you?

Finally, Kaiser, as far as I know only uses one medical equipment/device provider – Apria. This must be cheaper for the organization, but from what I've heard from other patients and from my own experience, Apria has a rather dismal patient satisfaction record. Shouldn't Kaiser allow competition?

Which brings me to the next section.

Apria: I have been using their services for seven years now. I have no compliments for the organization or their staff – only complaints. I will list just a few of them here.

Ordering replacement supplies is a total fiasco with Apria. Every three months, I am eligible for free mask, headgear, hose and filters for my Trilogy Resperonics ventilator. Every three or four months we call to order. Every three or four months the wrong size, model, or piece of equipment arrives in the mail. We have to send it back. We have to call. My caregivers have to give the exact model numbers over and over again. Wouldn't it be nice if they had accurate records of the equipment/supplies we ordered previously? What if Apria automatically sent the supplies every three months without the patient or caregiver calling? I'm sure there's some good reason for not doing that! Or perhaps the Respiratory person that comes every two or three months to do the necessary paperwork for billing purposes, could bring the correct equipment/supplies with him/her, is this too much to ask?

Six months ago the humidifier water chamber to my ventilator broke. We called Apria for a replacement. They explained that they needed a doctor's prescription. We got that after a phone call to my doctor, then we found out that Apria did not have any in stock. They would have to order it. It would take at least six or seven days to arrive. I have extreme difficulty breathing without my humidifier. When I explained this, they had no answer for me. So, my wife called another local medical supplier. They also required a prescription. She made another call to my doctor, he took care of the prescription. She then drove to the local supplier, paid for the humidifier water chamber because they would not accept our insurance. Finally, by the end of the day, I had the humidifier that I needed. Foolishly, I expected the additional chamber from Apria to arrive in a week or so. Four weeks later, nothing had arrived. I called Apria. To my amazement they had not ordered it. I cursed. I got angry over the phone, which is not easy for me to accomplish in my condition. Finally, one of the respiratory persons decided to check – low and behold, there were several humidifier water chambers on the shelf in their office. Needless to say, the next day he delivered the chamber, plus a spare. Is this decent customer service? I don't think so.

Which brings me to today's events and complaints which are still with Apria respiratory equipment services. The respiratory person arrived with a replacement for my Trilogy. This was okay, but a heads up would have been nice. He immediately started to replace my machine and complete his paperwork. My wife asked three times if the machine was exactly the same. Three times he answered, "yes." When my wife took a closer look, the screen was different and some of the options were different. The respiratory guy said, "oh, the software's new. The machine is the same model." Really? Don't you think you should've told us that? She had to ask several questions to get him to show her the differences. Should we consider this a safety issue? I think so... But wait, there's more! As he was leaving, my wife noticed that the indicators for the internal and external batteries were near zero. "Oh, it will take 4 to 6 hours for the batteries to charge," he said. Great, we thought. "What if the power goes out before that?" He had no good answer. He kind of shrugged his shoulders. We suggested that the external battery from the older machine remain with us, he timidly agreed, and switched them out. This was definitely a safety issue!

Finally, I'd like to say something about the respiratory service people – therapist or technicians. Are they therapists or technicians? It never been made clear to me. They never check me, the patient. If they are new to me, they always assume that I have this sleep disorder, called sleep apnea. They have no idea that I have ALS. They try to and shake my hand – ha! They often give vague answers to questions. They never follow up. They have made promises that they do not keep. The focus is always on completing their paperwork. If they are therapists, they are negligent. If they are technicians, they are barely competent. If they are paper pushers, they are doing a great job.

I apologize for the length of this letter. I had a lot of frustration to get off my chest. I feel better now. I believe that the only thing we can do is complain and fight for better service when we can. If we have the option, switch providers, but there's no guarantee it will be any easier somewhere else. I have little faith that the "Affordable Care Act" will make any difference. We just have to be grateful for what we have, which is easy to say, but difficult to feel positive about.