Okay, the first note was a little anecdote, intended to be amusing (which it was, after everything was all said and done). This next one… not so much.
A little background. I’ve been a diabetic for over 25 years, and I’ve been told numerous times that you need to be careful about specific parts of the body that wind up having complications – hands, feet, kidney, eyes, e.g. Especially eyes.
I need to have my eyes checked for something called Diabetic Retinopathy every year. Retinopathy is when the retina in the eye pulls back away from the rear wall of the eye, causing blindness. Thing is, retinopathy is not linear, which means that you can have accelerated retinopathy that can take place in a matter of months where there had been nothing for years before.
In the UK, you do not make appointments to get the eyes tested. The government sets the appointment day and time and sends you a letter of when your appointment is to be. If you cannot make it on that date and time, you notify the government lab that you have a conflict, and they put you back in the queue for the next appointment time. Often this is between 3-5 months later, and no they don’t have a date that you can have that will allow you to plan your schedule around. You are usually given a week’s notice before your appointment.
As a diabetic in the UK you must first register with a GP, who then refers you to a Diabetes Specialist. However, in the UK, pump therapy is NOT common. I still recall with utter horror needing to explain to a doctor what a pump was not even 5 years ago. Therefore, they force you to go to a Diabetic Pump Specialist, who is referred to by the Diabetes Specialist. That means that there are now 3 doctors handling your case.
As it is, the government mandates that retinopathy exams be given by government-appointed laboratories who are, essentially, traveling labs. They travel around regions of the UK doing the retinopathy exams and providing the results to the doctors.
Here is where it gets fun.
In May of 2007 I received my first appointment letter, but unfortunately I was unable to attend the session due to work I was doing out of the country on that date. I notified the government of the scheduling conflict and they told me that they would put me back in the queue. The lab, apparently, would not be back in my area for another 3 months. I asked if I could have an idea of when they would be back so that I could plan it in my calendar, and they said they didn’t have that information but I would be notified by (postal) mail about a week before, and that should be plenty of notice.
August comes and I arrive at the clinic, remembering to take my paperwork (there is a form that comes in with the appointment letter that you must bring with you – without the form, the government shuts down and sends you away). There was a gentleman there with a bandage over one eye talking to his wife, trying to calm her down. Apparently they had actually attended their previous appointment months ago but because the wait times were so long they weren’t seen, and he had a blood vessel burst in the meantime. She was ranting about how she wasn’t going to take ‘no’ for an answer this time.
When it was my turn I went into the testing room, and they did the tests (which involves taking pictures of the eyes). In the US when you get your eyes tested the doctor looks at your eyes and tells you what’s going on right then. In the UK, you are given no information whatsoever.
“What did you see?” I asked when I was told I could go.
“Oh, I’m not qualified to give you that information,” the technician said.
“Why not?” I asked. Normally I would have known what was going on by now.
“Because we need to take the results back to get analyzed at which point your GP will be notified.”
I was dumbfounded. “Wait,” I said. “The GP doesn’t look at the results?”
She shook her head, puzzled as to why I was asking so many questions. “No,” she said. “They are given the results and then they will send you an appointment to come in and discuss them.”
“How long does that take?” I asked.
“About 3 to 5 months,” she said.
“If I have a problem right now,” I said slowly, “Won’t that be too long?”
“You can see now, can’t you?” she asked.
I was mortified. As a matter of fact, I had been having problems with my eyes as the American doctor had found minor retinopathy in my eyes the previous year. I told her so.
She shook her head. “Well,” she said, getting up to show me to the door. “We can hope that the results will come faster, but I wouldn’t really expect it.”
I got a letter in the mail two months later from my GP in order to discuss what I thought was the retinopathy results. I thought that perhaps hope could be a strategy after all. Not so much.
The doctor sat down with me and said, “Okay, so what are we here for today?”
I looked at her gobsmacked. “I don’t know. I got an appointment letter and took half the day off to make it. I thought it was about the retinopathy results.”
She looked at me. “When did you have a retinopathy exam?”
“About two months ago.”
“Oh!” She was surprised. She had had no idea that the exam was even scheduled, let alone performed. “Let me see if the results are in yet.”
She got on her ancient computer and started to access my records.
“No…” she said, trying to search for any recent updates. I’m good with computers, but this medical record program she was using was DOS-based and too complicated for me to grasp without spending a significant amount of time trying to understand the layout and acronyms.
“No,” she repeated. “They’re not back yet.”
“Okay…” I said. “So why am I here?”
She looked at her screen again, but apparently didn’t see anything. “I don’t know,” she said. “I suppose you can go.”
I was pissed. I had taken time off from work and had no results. But the government had sent me a letter telling me to arrive at the clinic and I did so.
A month later I got another letter for the GP’s office. I was hesitant because of the previous time, and I hate wasting time, but I really wanted to get these results because my eyes were bugging me. The pain was concerning me.
So I went.
The GP – a different doctor than the one before, but in the same office – sat down with me and said the same thing as the previous time. “So, what are we here for today?”
I thought perhaps this doctor was filling in and wouldn’t have all of the information, so I wasn’t annoyed by the question. I told her that I believed I was here to get the retinopathy exam results.
“Oh!” she said, startled. “You’re a diabetic?”
I said that I was.
“Oh, well, I can’t get that information.”
I was confused and asked her what she meant.
“Well, as a diabetic you are being handled by a diabetic specialist, right?”
I nodded. “In that case,” she continued. “The only person authorized to give you that information is your Diabetic Specialist.”
I was, of course, stunned. I explained that I had come to the clinic a month earlier, didn’t know why, and went away without any information.
She looked like she was sympathetic. “Well, let me see if I can try to access the records…”
She turned and typed for what seemed like ages, but was probably only about 10 minutes.
She turned back at me, shaking her head. “No, I’m sorry. I can’t get access to that information. But what I can do is send a referral to the Diabetic Specialist and have them set up an appointment for you.”
It is now November. “How long does a referral take?”
She looked encouraging. “Oh, not long. I can get it expedited so that you can probably have your appointment in about a month.”
A month meant December, and with the holidays in the UK the entire government shuts down. Clinics’ ridiculously short hours (in some cases they are only open for 2 hours, three days a week) are abbreviated even more. I knew that there was no chance in hell I was going to be seen in December.
I was right.
The letter came at the beginning of January for the Diabetic Specialist. Being that the specialist was more regional, I had to drive an hour and a half to get there, only to be told that because I was on pump therapy I needed to see the Diabetic Pump Specialist. At least at this point it was close enough to my checkup time that the trip wasn’t completely wasted.
By this point, being mid-January, it was 5 months since the actual exam, and any retinopathy results were starting to get inapplicable to my existing situation. I was also in negotiations to returning to the US for a new job, so I was beginning to long for the flawed, imperfect health care available back there.
My Diabetic Pump Specialist appointment was set for March. At that point my return date was set for late April, and I was resigning myself to a need for another test in the US. Starting with a clean record/slate, as it were.
The absurdity of my situation – 8 months after an eye exam and not knowing the results that would have been given me instantly in the US – started to take precedence and give me a new perspective. The British are pathological about process, about “this is the way things are done,” and while always a fan I certainly understood British comedy a lot better at this point.
I went to the Diabetic Pump Specialist, thinking that I had finally managed to get to the place where I could get the answers.
You’ve probably already guessed the results.
“I can’t give you those results,” she said. “The law states that only those results can be given to your GP.”
Feeling like the punchline of a very bad joke, I explained the long trek I had had to get to this point, starting with the GP. The pump specialist, though, was unable to get any more information than the previous doctors.
It’s a mixed emotion you feel when you realize you have run your course with something to conclude in failure. I wanted to cry, because my eyes did hurt and I didn’t know what was going on as no one would tell me. I wanted to laugh because this is the stuff that legends are made of. I wanted to resign myself to the fact that I wasn’t the only one who had to deal with this.
I left the UK in April, more than 8 months after the examination, never learning of the results, but realizing that they were probably redundant by that point anyway. Upon arriving in the US I immediately made an appointment for a retinopathy exam.
I wish I could describe the feeling of freedom that I had when I could pick up the phone and determine when I would be available according to a mutually beneficial schedule. I wish I could describe the difference between being handled by a professional versus a functionary. I wish I could describe the feeling as the doctor looked at my eyes and told me that, for a diabetic with 25 years, I had surprisingly little retinopathy going on, and the pain in my eyes were likely from migraines and stress and not because I was going blind.
After going through what I went through, and the horror stories of my friends and colleagues in the UK, about how the ex-pats return to the US to get basic health and dental care despite it being “free” in the UK, my stance is pretty much based upon experiential evidence and not just some paranoid philosophical concern.
There are many many reasons to complain about the US healthcare system, but there are even more reasons to not want to move to a single-payer, universal system. Ultimately the question becomes: “will it be better or worse?”
It can be worse. Much, much worse.