You are not my patient, you are a social insurance patient

The sentence

I was told once, in those words, that I was not that doctor's patient. I was a social insurance patient.

Here is what that means in Austria, for anyone reading from somewhere else. There are two ways to see most specialists. You go through the public insurance you have paid into your whole working life, or you pay privately, which in that case would have been about 250 euros a consultation. Same doctor. Often the same room. Different door.

Everybody here knows the system has two doors. What is rarer is to have it said out loud that which door you came through decides how much of a patient you are once you are inside.

I am not telling you this because it is unusual. I am telling you because versions of it are said to people every day, in every country, in sentences that are never quite that honest. The money is only the visible part. What that sentence actually communicates is simpler and it travels everywhere: your time is worth less than mine, so your symptom can wait.

“It was not a slip. It was an accurate description of how I was being treated, said out loud by the person treating me that way.”

What being dismissed actually costs

Everybody assumes the cost is the delay. The delay is only the part you can see.

The real cost is what it teaches you. After enough of it you stop reporting things. Not as a decision. You begin to pre-judge your own symptom before you mention it, and you edit it down, and then you decide it is probably nothing, because you already know what the face on the other side of the desk is going to do.

So the system produces exactly the patient it had already decided you were: late, vague, and arriving with something bigger than it needed to be.

If you recognise that, I want to say the thing that was never said to me. It is not a character flaw and it is not ingratitude. It is what a reasonable person learns after being sent away a few times. It does not make you difficult. It makes you somebody who has been taught something, by people who did not know they were teaching it.

“By the time you stop telling doctors things, you are not being difficult. You are being efficient. You have learned the outcome.”

It is not only you, and it has been counted

I did not want this to rest on anybody's bad luck, so I went looking for whether it had been measured. It has.

In England, researchers took the 2010 National Cancer Patient Experience Survey, 41,299 people across 24 different cancers, and counted how many times each person had been to their GP before being referred to hospital.

The variation is enormous. For multiple myeloma, 50.6 per cent of patients had been three or more times before being referred. For pancreatic cancer, 41.3 per cent. At the other end, breast cancer was the lowest in the entire study at 7.4 per cent, and melanoma 10.1 per cent.

Two findings in that paper matter to whoever is reading this. Women had higher odds of needing three or more consultations than men, an odds ratio of 1.28. And the youngest patients, aged 16 to 24, had more than twice the odds of the 65 to 74 group.

Read the breast cancer number again, because I am not going to use a statistic dishonestly. 7.4 per cent is the best performance in the whole study. That is the cancer the system is most alert to. And even there, one person in every thirteen had to come back three times or more before anybody sent them on.

And if what you bring is pain

There is a second study I keep returning to, because pain is how most of this starts.

981 people arrived at an emergency department with acute abdominal pain. Everything was recorded: who was given something for the pain, what they were given, and how long they waited.

Women received any pain relief 60 per cent of the time against 67 per cent for men. For opioids it was 45 per cent against 56 per cent. After adjusting for age, race, triage category and the patient's own pain score, women were 13 to 25 per cent less likely than men to receive opioid pain relief.

And the number that says the most. Median wait for pain relief: 65 minutes for women, 49 minutes for men.

Same pain score. Sixteen extra minutes.

Why numbers instead of a story

Because the single most effective thing that can be done to a patient is to make them believe it was personal.

If it is personal, then it is about your manner, or your anxiety, or the fact that you asked too many questions, or that you are difficult. If it is personal, you can be fixed by being quieter.

It is not personal. It is a pattern with an odds ratio. That is not a small difference in how it feels. It is the whole difference between shame and information.

The part nobody teaches you: make it stick to the file

This is the practical section, and it is the one I wish somebody had given me at thirty.

Anything said in a room evaporates. Anything written in the file does not. The single most useful thing a patient can do is to move a concern out of the conversation and into the record, politely, in front of the person.

Three sentences, and none of them are rude.

Could you please note in my file that I reported this, and the date. Not a complaint. An administrative request, and a completely ordinary one.

If we are not investigating this today, could you note the reason. This is the one that changes the room. Declining to investigate is a clinical decision, and clinical decisions get written down. People are far more careful about a decision they are about to put in writing than one they are about to say.

What should make me come back, and how soon. This gives you a trigger instead of a feeling, which is the difference between going back too late and going back when you were told to.

Then read what was actually written. In Europe you have the legal right to all of it, and I have written about how to ask for your file and what it costs. The gap between what people are told and what is written down is the most educational document most patients will ever read.

“A doctor is much more careful about a decision they are writing down than one they are only saying.”

What I am not saying

I am not saying doctors do not care. Most of the ones I have met are working inside a system that gives them eight minutes and a full waiting room.

I am not saying arrive angry. It gets you labelled, the label goes in the file, and the label follows you into every room afterwards. The quiet administrative sentence works better than the loud one, and I dislike that this is true.

And I am not saying stop going. That is the real danger of a post like this one, so I want it said plainly. Distrust that keeps you out of the room is the injury finishing its own work. The goal is not to stop going. The goal is to go, and to be on the record when you do.

If this is happening to you right now

Four things, and all of them are free.

Write down what you reported and when, in your own notes, the same day. One line. Dates are the only thing nobody can argue with later.

Ask for it to go in the file, with the reason if they are not acting on it.

Ask for the trigger. What exactly should bring me back, and in how many weeks.

Take somebody with you if you can. A second person in the room changes what gets said in it, and I wish that were not true either. If there is nobody, the written note does some of the same work, which is part of why I keep insisting on it.

Why this is what I am building

Everything above is an information problem wearing the costume of a human one.

Being dismissed is bad. Being dismissed and having no record of it is what makes it repeatable. People spend years with everything about them written in documents they have never read, in language nobody translated, decided in rooms where they were the only person without a copy.

But there is a second thing, and it is the one that actually made me build something rather than just write about it.

Almost everybody who goes through this believes they are the only one. That is not an accident of personality. It is what happens when the same gap is met by thousands of people privately, one appointment at a time, with no way of finding out that the person in the next chair was told the same sentence.

The numbers in this post exist in journals. They do not exist in the waiting room. A pattern that nobody can see from inside it is experienced as a personal failing, every single time.

So that is what My NEDPath is for. Not to replace anybody's doctor, and not to diagnose anything. To be the place where the same gaps become visible, where what happened to you turns out to have a name and a frequency, and where the next person does not have to work it out alone from the beginning.

“A pattern nobody can see from inside it is experienced as a personal failing, every single time.”

Sources

Lyratzopoulos G, Neal RD, Barbiere JM, et al. Variation in number of general practitioner consultations before hospital referral for cancer: findings from the 2010 National Cancer Patient Experience Survey in England. The Lancet Oncology, 2012;13(4):353 to 365. doi:10.1016/S1470-2045(12)70041-4. 41,299 patients across 24 cancers. Three or more pre-referral consultations: multiple myeloma 50.6 per cent, pancreatic 41.3 per cent, breast 7.4 per cent, melanoma 10.1 per cent. Women versus men, odds ratio 1.28, 95 per cent confidence interval 1.21 to 1.36. Aged 16 to 24 versus 65 to 74, odds ratio 2.12.

Chen EH, Shofer FS, Dean AJ, et al. Gender disparity in analgesic treatment of emergency department patients with acute abdominal pain. Academic Emergency Medicine, 2008;15(5):414 to 418. doi:10.1111/j.1553-2712.2008.00100.x. 981 patients. Any analgesia 60 per cent of women versus 67 per cent of men, opioids 45 versus 56 per cent, 13 to 25 per cent less likely after adjustment, median time to analgesia 65 minutes versus 49.