Chronic Life: Making Medical Appointments Work for You

Like many other spoonies around the world, I have attended a vast number of medical appointments in my life so far. But it was only before my first meeting with a particular Neurosurgeon recently (to make a plan re. my Chiari Malformation) that I consciously paused to consider what I needed to do to make sure that this appointment was beneficial to me.


Obviously these are just my own thoughts and recommendations, based on my personal experience; other spoonies may have different views. These tips are as much reminders for myself as for others!

So, here are a few tips based on what has worked for me:

  • Create a medical file – Depending on how much paperwork your condition(s) generate & how long you’ve been living with these conditions, you may need to decide if you want each file to cover a year or some other suitable period of time. Your file can be separated in which ever way makes most sense to you. Sections I created in mine include: Contacts Details (for every specialist, GP, nurse practitioner I see), Appointment Log, Letters (each specialist has their own section), Test Results, Pain Diary. I also keep a small notebook in the back of my file. I keep my current file a manageable size so that I can take it to appointments with me when I wish, especially if I’m seeing someone new.
  • Take an extra pair of ears – Some people prefer to attend appointments alone; indeed, I preferred to do so for many years. But these days I like to have my husband attend with me. Daily pain can cause what many spoonies refer to as ‘brain fog’ so I like to be able to talk the appointment through later with my husband. This leads onto my next point…
  • Write down the major points and decisions made during appointment as soon as you leave. Some people may not feel the need to do this but I find it reassuring as a way to make sure I haven’t missed any important details.
  • Before attending appointment, consider what key questions you want answered – I find going into appointments with the things I want explained or clarified written in front of me is helpful as appointments can fly by & it’s all to easy to find yourself outside remembering that you had questions that you never got around to asking.
  • Before you leave the room, ensure that you know exactly what the plan is – this one can be as simple as saying “So before I go, can I just confirm that our plan moving forward is…” If tests/procedures have been recommended, check who will arrange these and which office you should contact if letters/appointment details aren’t forthcoming.
  • Don’t be shy about asking for a time frame – my Neuro always provides a time frame and tells me to contact his office if x,y or z hasn’t been done by a certain date. Not all specialists do this though so feel free to ask – it’s a reasonable question.
  • Get used to politely advocating for yourself – for example, I was initially given an appointment 5 months away to discuss my Chiari. One phone call to my Neurosurgeon’s secretary was all it took for that waiting time to be cut to a couple of weeks. It doesn’t always happen as smoothly as that but if you’re unhappy with some element of your care or the related admin, calling or having somebody call on your behalf is completely reasonable. 
  • Remember that you are not stuck with anyone – if you’re finding that an individual makes you anxious or unhappy in their dealings with you, remind yourself that you’re not stuck with them! I’ve known a wonderful Neurologist who I saw for many years; I’ve also met with one very well-known Neuro who was arrogant, abrasive and an all around arsehole. On doing a little research afterwards I found that many patients agreed with my assessment of him, so it wasn’t just me! In my opinion, a specialist’s knowledge and experience is of no use to me if they can’t communicate it without being so offensive that I want to hit them with a chair. I’m in a lot of pain and have been for many years – I won’t tolerate anyone adding to my stress with their poor people skills. If you are unhappy seeing someone then don’t feel you need to stick with them; arrange a referral to someone else. 
  • Remember who is in charge – you! Of course we’re mostly guided by the advice of our specialists but we are the ones in charge of our bodies and all decisions related to them. Sometimes appointments can be nerve-wracking but remember that you decide what treatments you’re happy to undertake. If you’re being offered something like an op, it’s totally ok to not decide right there in the room. If you’d like some time to discuss things with family before letting specialist know of your decision then that’s totally ok. Of course some situations require urgent action but if you’re attending an outpatient appointment then unless you’re being strongly adviced to become an inpatient right now, most decisions can at least wait 24 hours if you need a little time to process what you’ve been told. 

Do you have any particular strategies for ensuring that you get the most out of your appointments?

Wishing you good luck & happy days,

Kindra x

Tweet/follow me –@chroniccockney

Chronic Pain Cockney – The Little Things is also on Bloglovin.

5 thoughts on “Chronic Life: Making Medical Appointments Work for You”

  1. It has been my experience thus far that although the test results are *often* accessible via computer, they are not *always* and it is best to have all recent test reports with me. This saves a lot of time and prevents having to waste an appointment that ends up just being a suggestion to make a new appointment once they have results from prior testing. I never let them keep anything, just copy it. This is particularly helpful when seeing an out-of-town specialist. They likely will not be in the same hospital system and therefore if you don’t bring it, they won’t see it.

    Also, I have learned to be really upfront about my anxiety. I swear at this point I have medical PTSD, and my normally very low blood pressure gets really high, I get nervous, sometimes I feel shaky or like crying. It helps to say at the outset, “I am *very* anxious about this, as I have something very rare and tend to respond to things very differently than other patients.” It helps to remind them that I am not stupid, and that my nervousness is due to legit past events that had poor outcomes.

    Liked by 1 person

    1. Keeping copies of reports/results and bringing them to appointments is a very good idea. You’re right, it can take an age for such things to be passed from one practitioner to another, if it happens at all.
      The negative experiences really stay with us, we carry them with us & it can make us very anxious, especially when seeing a new specialist. Being dismissed or belittled by a person we had hoped could help us is so damaging and something that is never forgotten.

      Liked by 1 person

  2. If possible, tape your conversation with the specialist (this sounds maybe peculiar or harsh, but it sure has it Pros and Cons later)…

    Liked by 1 person

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