Self-advocacy and Medical Procedures

In the past year, I had a minor medical procedure. It wasn't my first time and I wasn't particularly nervous. Still, it's an environment that stresses me out and I get a bit flustered with all the lights, movement, strange people, demands, vulnerability, unpredictability, etc. As I'm sure I'll have to undergo this sort of thing again in the future, I'm wondering if anyone has any tips to make things a bit easier for everyone involved. How can I express my needs for things to be explained to me in detail as we go along and to allow me to take more time to answer questions and possibly answer a question with a question? The medics are working to a schedule, and I suppose they don't want people slowing them down, so I'm a bit unsure of how to advocate for myself in this sort of situation. When to express my needs, to whom, and in what way, etc.

When I'm asked a question, I tend to think of all of the possible answers for all of the possible interpretations of the question. Then I have to sort through them and guess which interpretation best fits the likely intention of the asker. This takes a few seconds, so my response time is often slow and my response is often to ask another question to get more context to help me narrow down the possibilities. If I'm stressed or flustered, I might not even know what counter-question to ask, so I just freeze.

I can give you a specific example of what I mean. There were a doctor and two nurses in the room. They were being very reassuring and talking me through things. The room was very bright, as you'd expect, and I was lying on my back looking at the ceiling. One nurse was apparently the expert in finding veins and would insert a cannula. The other nurse and the doctor were moving about the room and I was keeping track of them, too (as I do). I was on nil-by-mouth for about 12 hours and a little dehydrated, so finding a vein turned out to be a little trickier than expected. The nurse tried at my elbow: nothing. Halfway down my forearm she inserted the needle, but couldn't get a vein there, so gave up and moved to the back of my hand. There she managed to find a vein and tried with the needle again, then inserted the cannula and then attached a big syringe of what looked like water. At this point, with one needle stick in my forearm and a needle stick and a cannula in my hand, my arm and hand were feeling a bit sore and uncomfortable. Now the fun started: she began to press the plunger on the syringe.

"Does it hurt?" the doctor asked (note: not the nurse with the syringe).

"Eh... um...," I stammered. I didn't know what he was asking or why. He was on the far side of the room. My hand was sore and now the big injection was making it sorer. Which did he mean? Was he asking about my pain in general or pain in particular? Did he mean the injection or not? If it was about the injection, wouldn't the nurse be asking the question?

"Does it hurt?" the doctor and nurse asked together.

"Um...." Everything hurt. What did he mean by "it"? Think, think...!

"Does it hurt?!" and now I can hear an edge of impatience in the doctor's voice. I was taking too long to answer.

"Eh, yes, a bit," I had to say something.

The nurse adjusted the cannula and continued injecting and the pain was not as bad as before.

The next day, I decided to google the procedure with the cannula to see what had happened and if there was something I was missing. It turns out that the big injection is a saline flush to ensure that the cannula is properly situated in the vein. If the cannula has missed the vein, then the flush will force fluid into the surrounding tissue and the pressure will feel quite painful. If the cannula is properly in the vein, then there isn't much pressure or pain. So, the question I was supposed to answer was really, "When I, the nurse, press this plunger, does the level of pain in your hand increase from its current level?" That would have been an easy one to answer: "Yes."

Parents
  • I'm wondering if anyone has any tips to make things a bit easier for everyone involved. How can I express my needs for things to be explained to me in detail as we go along and to allow me to take more time to answer questions and possibly answer a question with a question?

    I suggest using this resource, which you can complete and provide, in advance, to those involved in your care.

    You can use it to document everything that you feel it's important for medical professionals to know.

    It includes sections, for example, about how you experience and communicate pain, and how staff should best communicate with you (eg clear questions, being given longer to think and answer) - but you can also add anything else that you want to let them know about. The page also includes guidance notes for completing the document:

    NAS - My Health Passport

  • Thanks, Bunny. That was very helpful. I will probably write up something like that before any future procedure.

  • Continuing this. I have an autism passport that my health area helps you produce. I find it really useful.

    My hospital area also has designated learning disability and autism nurses who can help explain your needs to other members of staff or ensure your needs are met if you get in contact with them. So one time I had to get a procedure that was really difficult for me due to sensory sensitivities and we got in contact with the nurses and they ensured I had extra time for the appointment so I could take breaks, made sure my mother would be able to come with me, and went and explained the situation to the people doing the procedure before hand so they understood it well. It was a very good experience. 

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  • Continuing this. I have an autism passport that my health area helps you produce. I find it really useful.

    My hospital area also has designated learning disability and autism nurses who can help explain your needs to other members of staff or ensure your needs are met if you get in contact with them. So one time I had to get a procedure that was really difficult for me due to sensory sensitivities and we got in contact with the nurses and they ensured I had extra time for the appointment so I could take breaks, made sure my mother would be able to come with me, and went and explained the situation to the people doing the procedure before hand so they understood it well. It was a very good experience. 

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