Published on 12, July, 2020
On Thursday I was in the Northern General Hospital (Sheffield) to have a stent fitted. The operation went really well but was longer than expected so I had to stay overnight. I'll ignore the usual things like having no sleep due to the noise, light and movement. I'm sure people with an ASD will be familiar with that. No, I'll get to a specific issue with the hospital which I've had many times before. The pharmacy there is a huge bottleneck. Last summer I was in there and had to wait 11 hours for a prescription. All the while taking up a bed which someone more needy could have had.
This time it was worse. I was supposed to be out first thing, however, the nurse kept saying everything was in order, we are just waiting for the pharmacy. About 5:30 in the afternoon she showed me a laptop screen which showed my prescription half done. She said it wouldn't be much longer. A few moments later I overheard two of them talking about it saying it would be mid evening before it was done. The nurse had lied to me.
That was it. I could feel this darkness starting to descend, that part where I'm suddenly unable to speak or move. It just got worse and worse. Suddenly and unexpectedly I got up, grabbed my coat, and walked out. I walked faster than I've done in years - the operation is an obvious success - and a fair distance. You aren't supposed to walk out of hospitals so they tried to call me but obviously I was incapable of answering. So, I'm home and safe, but, without important medication and no way to get it. The hospital is probably still annoyed with me. I don't care - I'm just glad to be free again and in my space.
I never know what that is though. It seems to be a mix of a shutdown and a meltdown. I can't speak or move (some say I have a tendency to rock), but when I decide to go, nothing can stop me or get in my way. When I'm like that I have absolutely no control over what is happening
Sadly I think that communication between departments in the NHS is really poor, which is what happens when the Government absolves itself of leadership/ownership. Everyone seems to be operating on a different system because there's no one taking central charge. My husband is currently having cancer treatment and it took five different conversations just to get the correct address on every computer! Then appointments were sent out twice, they missed a crucial note from the consultant about dentistry pre-radiation and he had to ask when his chemo was because no one told him.
I wonder how people who really struggle can cope? I wonder how I would cope without my husband who is more assertive than me and will demand information, where like you, I just flee. I am having a tough time being in the hospital 5 days a week, especially as the appointment times are really loose. The first day I left my two dogs at home and shut down as the wait got longer. Eventually I had to leave and I drove home in panic and only relaxed when back. Then I had to drive back (hour plus drive) after twenty minutes to collect my husband! But I was happier doing that than staying in the hospital.
As you say, one of the real problems is the bending of the truth that the staff are having to do to try to manage their awful situation. I have every sympathy but we could tell that the radiologist was lying when he said it would only be another 45 minute wait. Which is why I had to leave. It just makes me panic when nothing is reliable. Only home and my dogs are reliable!
It's so hard to deal with, but I'm not surprised no one knows you're autistic as I don't think they have access to your notes half the time let alone time/energy to read them. I moved from Scotland two years ago and my GP says they can't access the notes from there. And anything prior to that is in a warehouse on paper somewhere. I am waiting for my referral appointment and think that there's a lot of information on my record that will contribute but accessing that seems to be impossible! What a worry
What do you do in this situation where you need them to be aware? Do you just tell everyone you have to deal with? I have been wearing my headphones and I think my behaviour generally is alerting people but my feeling is they don't know how to respond. I remember years ago, before I thought I might be autistic, warning a university tutor that I might not turn up to an assessment, and she just raised her eyebrows! That's kind of how it still feels even now. Nobody really gets my anxiety over being with my dogs, for instance. They just think about my husband's treatment, but life doesn't stop, or stop being challenging just because there's another priority, in fact it just gets worse!