Published on 12, July, 2020
How do you do it?
By the time I get to any appointment I'm beyond the point of being reasonable. I can't think, can't remember what I needed to say, become situationally mute, and fail to explain what's going on so 9/10 times I leave without being understood and have a meltdown at home after. That's assuming I managed to leave the house in the first place
I forget that I've experienced things before and classically don't recall how long I've had the problem. I looked up my medical record the other day and found I've actually been complaining about menstruation problems for my whole adult life, not just the last few years.
Now I have to go have a scan. I get a letter, have to open a website and log in, choose from 6 places 2 have a different booking process, all are miles away and just that makes me meltdown. The last medical apt I made myself go to ended with me headbanging against the hospital wall and the medic wrote a stinking letter to my GP telling her off for not mentioning autism in the referral.
What suggestions do you have for getting to, staying at and communicating at medical appointments?
I have no family/friends to take me
I got discharged from community support because I couldn't drive to meet him (eye roll)
I stopped taking notes into apts because a GP was nasty about it and claimed I was making things up to get attention. (he also said 'people who work don't have mental health issues')
Bottom line, I don't trust doctors or professionals after a life time of being ignored because of how I communicate.
Yeah that sounds horrific.
I'd definitely start taking note to apts. Ignore the GP, he clearly has misconceptions about many things. I both take notes to appts, and take notes during the appointment as I'm not great at remembering things communicated to me aurally. My GP has largely been very understanding about this, sometimes allowing for longer appointments because communication can become an issue for me too. I'd recommend asking about this every time you have an appointment.
I'm not surprised the medic wrote a stinking letter to the GP, that is something that absolutely should have been communicated.
My area has a scheme called an autism hospital passport. I worked with a member of staff to make one, and then it's logged with all the hospitals under that health trust. If I have an outpatient appointment, I can (or more usually my mother does) phone reception and alert them to the fact I'm autistic. For really dodgy appointments (eg ultrasounds which are really bad sensorily for me) the hospital has a few members of staff who are learning disability and autism advocates, and I can get in contact with them and they found the person who would be doing my appointment and explained what extra stuff I might need, which was the difference between me making it through the appointment (with a lot of sensory aids and breaks) and not. If I were to come in emergently, I have a paper and online copy and the emergency staff should be able to access it through their systems too. It has some really important information on it like sensory sensitivities, the fact that I'm not going to remember to eat or drink so if it's nil by mouth that's fine, but I'm not going to notice I'm getting dehydrated or may need prompting to get food, a request to have everything in writing wherever possible, particularly instructions, and what would help if I get overwhelmed/what signs I have that I'm getting overwhelmed.
While it sounds like your area doesn't have this, some of it could be carried over. Trying to make a document that explains the really important information the clinicians need to know and some things that will help/hinder you managing the appointment. Get it logged with the GP, and then whenever there needs to be a referral, push them to send the document over with it. Some clinicians won't like it, but most of the ones I've experienced are really happy to do whatever makes the appointment easier, and are really thankful for being given the information in advance.
Notes are key, your previous GP sounds like an idiot.
I agree, I think also voice notes are good too to play back.