What I take with me to my doctors appointments

Time and again I have been told by specialists that I am an ‘expert patient’ and, more surprisingly, that I know more about my condition than they do. It’s taken a while for that to truly sink in. But now that it has, I accept the reality and I take control of my end of the communication. It makes sense that I should be able to communicate what I want to. There is no reason not to pass on valid information that will help the doctor to make a more informed decision as it could directly affect my health in a really good way if I do.

Doctors are there to help us, but frontline primary care doctors are trained in general medical knowledge. They have general knowledge about a lot of things so that they can treat us when they can, and refer us on to a more specialist practitioner when it goes beyond their training. In the UK they are called General Practitioners (G.P.s) for that very reason. They can’t know everything about every condition; it just isn’t viable to cram that much knowledge into one human’s brain!

I’ve found that some G.P.s know a bit about my condition, and when I have asked them about it they have always said that they only know anything because they happen to have worked with another patient with the same condition before. And they always say that their first patient with the condition was a huge learning curve for them. So if I’m going to see a doctor who I haven’t seen before I take information with me explaining what my condition actually is.

This is because rare conditions remain on the outskirts with the very-specialists. The new research information just doesn’t reach general practitioners, and why would it? It’s way too specialist for them to keep up with in addition to everything else they have to know and keep updated on already.

It also doesn’t reach doctors who are specialists in other areas. My cardiologist didn’t know as much about my condition as it first appeared, (only the cardio’ aspects and some of the basic ANS involvement), and he very candidly advised me that if I saw a neurologist or gastro-intestinal specialist, that they would not know, either.

So whoever I go to see, I know that they will not have the full picture.

So I can’t expect them to treat me appropriately unless I give them more information.

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The main thing I always remember is….

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Doctors like data.

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It helps them to make informed decisions.

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So it’s simple….

I take data with me.

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Let’s face it, if it’s taken me years to sift through the information online and find out what’s current, what’s outdated, what’s correct and what’s faulty interpretation… then I can’t expect them to figure it out in just a ten minute appointment! So, written information for them to look at is really helpful for them and usually very much appreciated. Not to mention hugely helpful to me in getting treatment appropriate to my condition.

But how best to present this information? Verbally? Take notes with me and give a mini-presentation? In writing? And if so, written by me? Or by some doctor or researcher?

I have had the dubious honour of being the first CRPS patient for various G.P.s over the years. And as a result I’ve come to the conclusion that it’s easier to hand them some information in writing than to try and explain it all myself verbally, (preferably with some sort of scientific journal reference or a web address link to show official endorsement from a relevant medically informed group). Firstly because doctors are trained in facts, and patients’ anecdotes just don’t carry the same scientific weight, (that’s why the scientific references/endorsements are helpful). And secondly because a few doctors sometimes forget that an ‘expert patient’ is actually very helpful, (hence the references/endorsements, again). The scientific references are therefore doubly useful because they present hardcore facts and they scientifically back-up what you are saying to them.

So, I always take an explanation of my condition with me to any appointments with new doctors. I no longer need to do this with my G.P. because he now has the general gist of CRPS and its association with the autonomic nervous system.

But if I am seeing my G.P., or any other doctor, about specific symptoms or ‘interesting’ new developments, then I need to take a little more with me.

I’ve started to back up everything I say with data, because the condition is so unusual when compared with standard medical training. Doctors are used to anomalous issues with organs, but not very familiar with what can go awry when the organs are happy and healthy but the wiring between them and the brain is seriously faulty.

So when I needed to see my doctor about the permanent near-fainting, constant nausea, and disturbing cognitive deficits I gathered information before I went. In fact I did four things…

1. I made a list of all of the symptoms which I was experiencing. I then organised them with the most problematic ones right at the top of the page. Nice and clear. It is useful for the doctor to have it to hand so that they can read and re-read the salient points without having to keep information in their head whilst asking me questions and considering my answers.

2. I also printed off some research papers that I thought might help my doctor as they explained about these sorts of symptoms with my condition. (Never forgetting of course that the symptoms could be something different, I never self-diagnose, that would be very silly as I don’t have the medical training, I simply gather relevant information for the doctor as I do know rather a lot about my condition, and then we discuss what we think it might be and how to move forward from there). So I had printed off a copy of a research paper about fainting being common in patients with CRPS, which included an explanation as to why this is, (faulty ANS doesn’t constrict the blood vessels properly in my legs so when I stand, and sometimes even when I sit, the vessels are too wide and so it takes more blood to fill them up, meaning there just isn’t enough blood left in my upper body including my poor bereft and foggy brain!), and I also took a printoff of a research paper about neurological deficits in patients with CRPS (although this is more general and my cognitive issues appear to be more related to lack of oxygen, but it was as a back-up in case he didn’t know about the effects of ANS malfunction on the vascular system or common CRPS neurological issues, I try to cover all the possible scenarios!). As it turned out I didn’t need either of them, but they were there as back-up all the same. I’ve since shown the papers to my respiratory physio’ instead, who loves new information and was very interested to read them.

3. I also created a list of the symptoms that were causing the biggest problems and at the end of each day I scored my day’s experience of them on a scale of 1-10. I used the basic 10 point pain scale as a guide. Well actually I combined three different descriptions of the same pain scale as they were different ways of describing the same thing! Even though it’s an effectively subjective scale I wanted to express my pain levels as coherently and ‘accurately’ as possible. Here’s what I used…

0 No pain
1 Mild Pain – can be ignored Bearable Mild pain, annoying, nagging
2 Mild Pain – can be ignored
3 Moderate pain – interferes with tasks Mildly painful Discomforting, troublesome, nauseating, gruelling, numbing
4 Moderate pain – interferes with tasks
5 Moderate pain – interferes with concentration Painful Distressing, miserable, agonising, gnawing
6 Moderate pain – interferes with concentration
7 Moderate pain – interferes with concentration Very painful Intense, dreadful, horrible, vicious, cramping
8 Severe pain – interferes with basic needs
9 Severe pain – interferes with basic needs Excruciatingly painful Excruciating, unbearable, torturing, crushing
10 Excruciating pain – cannot function

When symptoms were not pain-based I found that the references to interference with tasks/concentration/basic functions was very helpful at placing my symptoms on a scale.

And as I have a laptop to hand I even created a graph of this info’!

Having a visual presentation of data often shows up patterns we may not have spotted before as well as being a really time-saving way of explaining what’s been happening. If nothing else it’s a really easy way to see how big an issue certain symptoms were, like the near-syncope (near-fainting), which never went below a 5 during the time I was logging the data.

4. I also wrote down and printed off my thoughts on the matter, just in case I jumbled up my words on the day. And I actually ended up just handing it over for him to read. Easy peasy!

And do you know what? My offprints seem to have done the rounds! Originally I saw a locum doctor whilst my doc’ was away. The head doc’ paused the referral until I saw my own doctor, then by the time I saw my doc’ he’d already been shown my printed data. And it turned out that when the referral was made, my symptom list, graphs and summation of my thoughts were all sent off to the neurologist with the letter referring me to him, as they thought it would be helpful for him to see the offprints, as well. Wow! They really were useful!

The one thing that I was really worried about was the length of time it would take me to get referred to a neuro’, who I would then get an appointment with, who would see me and realise it’s not his area, and then (hopefully) refer me to an autonomic specialist, who I’d then have to wait for an appointment with…..

With the symptoms being as severe as they were I was worried about having to endure two separate waiting times to eventually see the appropriate specialist. But…. the offprints gave the neuro’ a lot of information without him actually having to see me in person, and he just wrote a letter to my G.P. suggesting that I get referred to an autonomic specialist instead. It turns out that that’s enough for the primary doctors to go on. The referral is underway. And waaaay quicker than it would have been otherwise.

So hurrah for my new habit of taking info’ to the doctor! It has made a massive difference, and shall be my new way of working from now on.

x

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15 thoughts on “What I take with me to my doctors appointments

    • Ahhh, tis only the wonders of Excel! 😉 I really did need to get a lot of info’ over as quickly and easily as possible, multiple symptoms over multiple days, and I’d logged the figures in Excel anyway. So it only took the click of a couple of buttons. Next time he might get pie charts, hehe

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  5. I can’t believe I didn’t find this blog in my initial searches as this post has to be one of the most helpful things I have found since I was diagnosed at the end of last month. I have a new GP since a house move and sadly got lumbered with one with a special interest in substance misuse, meaning when he saw me the first time and I was in agony (bad flare), he made some presumptions about why I was there. Have you experienced this at all? I am going to try this out on him, have you ever had a bad response to your presentation of research? xx

    • Hi, I’m so glad that my weblog is useful to you. The whole reason I created it was to try help my fellow patients from having to take such a long and winding route as I did, so it’s always wonderful to hear when it has been useful, x
      I find that the more official the information backing up what you’re saying the better, doctors tend to shy away from anecdotes and case studies, and they also don’t know us well enough at first to trust our sense of bias. The more we become ‘expert patients’ over time the more they get the hang of knowing that we’re on the ball (*not* hypochondriacs) and being practical (*not* drug seekers), but til then anything on paper which we can back things up with is better and it cuts to the chase. (If you have a doctor who never gets either of these points, consider changing doctors as you need someone who you can work practically with, rather than someone who you have to battle with to get anywhere). I’ve never had a bad response to research as such, but some will be interested and others won’t be bothered to look at it and will wait for us to explain why we’ve brought it and the salient points we want to raise (the clock is always ticking in appointments and they want to use the time in the way they feel works best). So it’s good if we know the information well enough to give a sensible summation.
      The one thing I haven’t really added into the main post above is the way I present the information, I have found that if I’m too soft and subservient some doctors will railroad through and I’ll come out of the appointment stuck exactly where I was healthwise when I went in. So I now turn up for my appointments knowing exactly what I want the doctor to take on board so the first thing I do is make that happen (style of presentation varies per doctor, some like a little bit of hat-tipping to keep them happy that we’re not under the impression that we’re the doctor, whereas others appreciate the brain they’re talking to and have no need for this as they just want the data). I want them to take on board the particular aspects of my condition that I am wishing to address, backed up with information that gives it appropriate context to get them thinking along the right lines (as they are non-specialists and this area of thinking is unusual for them). Then I want them to apply their medical knowledge to the information and insight that I have given them. And I want a discussion and joint decision with reasons for everything. I won’t accept an appointment outcome until I fully understand it, the pros and cons, any risks involved and what the intended development/assessment of that decision is to be. Of course I’m always polite, attentive, time-saving and respectful, I want to complete the appointment as successfully and professionally as they do, but I get up to go only when I am satisfied (or when it’s become apparent that I’m talking to a brick wall and need a new doctor)! The key is that no non-spec’ is going to know as much about your condition as you are eventually going to know. Becoming expert patients and self-advocates is the way to most successfully deal with these kind of specialist conditions. I’m glad that the ‘What is CRPS?’ page is there for you to get mostly up-to date in one go, (I wombled along blindly for about a decade before I managed to slooooowly find and gather such information, so grab that info and wave it at him if you think it will help 😉 ). Keep an eye on the ‘last updated’ date at the top of the page as I have some additional references to add to it when my brain is up to it.
      Oh and if you need to validate who on earth this mysterious online patient is who gathered all this info then just check the author info at the bottom of the page as there’s some academic background as well as the ‘expert patient’ status, x
      (I hope to eventually have a version in downloadable PDF form on the website, plenty to keep me busy here)!
      x

  6. Wow, thank you so much for your help, I can’t even begin to say how much that has helped me put things in perspective. I have a pain clinic appointment at the weekend and relationships have begun to break down (maybe not in their viewpoint but certainly in mine) due to repeated cancellations by them and lack of communication with my GP. I suspect they are going to be a little “sore” about me having to use the patient liaison service over here (PALS) to get somewhere, as it resulted in them having to put on Saturday clinics. I wasn’t the only one to ask for help though. I think your approach is commendable and I am going to try and replicate that on Saturday instead of being cowed as usual! They haven’t seen me since my diagnosis, so I will get their verdict on that too – the neurosurgeon who diagnosed me has written to them making some suggestions too, so fingers crossed it will all come together.

    I will definitely keep an eye on your blog for updates and new posts as I think it’s possibly the most useful tool I have found so far since my fluffy bed socks lol! xxx

    • Oh I’m so pleased! Yes self advocacy rocks, especially when coupled with a calm and respectful exterior. Hehe, I’ve a feeling you’re going to get pretty good at this 😉
      Glad PALS were useful, I’ve only used them for getting copies of my medical notes so far so it’s good to hear they’ve helped you on other stuff too. Good luck for Saturday, I will be cheering you on from here, xx

  7. This is a lovely post. I do a somewhat watered-down version of this myself, but then again my (known, confirmed) conditions aren’t quite as rare as yours. I agree utterly that becoming a patient-expert is the only way to guarantee one receives satisfactory outcomes in the health system. Unfortunately, it is a process that can be complicated even more when doctors can’t even pin down a definite diagnosis (or diagnoses) matching all symptoms!

    As for a pain scale, while the ones you use are certainly reasonable, I find I prefer Allie Brosh’s when I need to lighten my mood: http://hyperboleandahalf.blogspot.com/2010/02/boyfriend-doesnt-have-ebola-probably.html

  8. Pingback: 1-10 Pain Scale descriptors for patients and doctors | Elle and the Auto Gnome

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