Healthcare Reform Wish list

Thank the good God above that Congress took its first poke at the screwed up healthcare, health insurance, health delivery system here. I know that it’s a compromised, beat up, doesn’t go far enough and basically inexplicable bill. But it passed. And I know that a lot of committed and dedicated public servants spent many hours talking it through and making it happen and I am very grateful.  I don’t think anybody is quite sure what this reform will do, but here’s a part of my wish list for change:

Doctor visits: Does it bother anyone else that doctors don’t examine patients anymore?  I haven’t had a doctor touch me in years. I went last week, finally, because of burning pain in my neck and shoulders for four weeks. Of course, I saw a PA instead of a doctor because I wanted to come at 8:30 a.m. She said it was muscle spasms without even feeling it. When I suggested an MRI, she tried to talk me out of it.

“What if it’s something else,” I ask.

“Like what?” she challenged me.

For a week I’ve been rotating hot and cold compresses every 20 minutes (well, until Friday when my heating gel exploded in the microwave). This morning I feel a lump behind my left ear that feels like it’s on fire and seems to be the origin of the pain. I requested another appointment.

Shared records:  This is going to make my life so much easier. My husband has a brain disease that results in seizures. He is a patient at the VA attached to UCSD, which has the best neurology program in the country. But when he has a seizure he has to be taken to the nearest hospital – a community branch of the Sharp system. In the last year he has been hospitalized 11 times – some at each hospital. They don’t share records – test results, doctor’s notes. He has had 26 MRIs in 6 years and 10 spinal taps – all with the exact same results. I tried to refuse MRI number 25 and when I bought the medical records (ALWAYS buy the records, folks) he had written that I tried to refuse and was “risking death.”

But I won the last one.

“Why do you want to do this procedure, Dr. Foo?”

“To confirm the diagnosis,” said Dr. Foo.

“But will it help the patient in any way?”

“No.”

Use your imagination to figure out my nickname for Dr. Foo.

Patient Grabbing: I became aware of this when I had to deal with the dueling hospitals. First of all, Sharp Hospital refused to transfer him to the VA. They refused to consult with the VA.  The ER doctor whined at me, “I called and no one called back.” This was at 1 a.m. and I’ve navigated the VA phone system enough to know he probably didn’t leave a message or didn’t say his name clearly and certainly didn’t leave a return phone number. Or give a shit.

They want the money.

After about three days, a neurologist came to see me.

“What you need is a primary neurologist where you live, because he’s going to keep having seizures and keep coming here,” he said. “I practice nearby.”

“But what do you know about his disease?”

“That doesn’t matter. It doesn’t matter what is causing the seizures. All that matters is that he keeps having them and we keep treating them.”

Exactly.

This month he seized on March 4 and when they wanted to discharge him he couldn’t talk or dress himself so we tried something new. We got him transferred to a convalescent facility for a few days until his brain could catch up. It seemed very nice. They had physical therapy, and lots of personnel. They had birds and flowers and a fountain.

After three days he seemed back to normal and I was getting ready to take him home when the case manager called me.

“We think we can do more for Michael. He can stay for 20 days under Medicare. We’d like to take him further along and think we can.”

“Why don’t I take him home on Wednesday?”

“But he can stay until Friday.”

We all met and Mike and I agreed to try this because he often is unsteady. They said he could actually use the gym whenever he wanted as long as a staff person was in the room. I brought more clothes, showed him how to find Solitaire on the computer in the Activities room.

Frankly, I could use the break.

Discharge day came and Mike went around to everyone to say goodbye. He makes friends everywhere he goes. As we were walking out, we passed the gym.

“Did you like the gym?”

“Oh, they stopped my therapy three days ago. Said I had had enough.”

I’ve had enough, too.

So I have high hopes for healthcare reform. The system is sick, confused and bloated. No one has touched it in years.

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