- On the 26th November we received a letter in the post saying I had an appt for an EEG *the next day*.
Great job guys 😑
There were also some huge issues with this appt ~ firstly, it gave me less than 24hrs notice, which is beyond ridiculous. According to the letter it was ready to be sent out in October!!! By the time I woke up & Lyle got the post, the phone line at the hospital was already shut.
2) I have never been told I would be having a sleep deprived EEG. It was agreed a sleep deprived EEG would be extremely dangerous for me, as missing sleep is one of the biggest triggers for my bipolar mania.
I was SUPPOSED to be having a 24hr EEG, which I found out about last June via letter. I haven’t heard anything since.
3) ME means I have to sleep/rest when I need to. I NEED to listen to my body, it’s taken me long enough to learn this!! Skipping sleep would make me immensely ill.
4) This hospital is supposed to have it on record that I can’t attend appts before 12pm…yet every appt they dole out seems to be between 9-10.30am 😑
Lyle phoned and left a message on the number provided. He cancelled the appt, explaining the letter only arrived today. He went on to explain that I was supposed to have a 24hr ambulatory EEG, not a sleep deprived EEG, as my health conditions mean that would be dangerous.
- On the 29th November we received the exact same letter inviting me for a sleep deprived EEG, only the appt date was different.
They closely either hadn’t listened to our message, or had just entirely ignored it.
Lyle phoned up, left a bigger message, & asked someone to call back. Nobody did.
- After having an amazing experience with PALS, we actually had a way forward to deal with appts. Due to a butt load of medical trauma & my autism, I struggle immensely with appts, & haven’t been able to attend any since summer.
PALS sorted it where I’d have several notes added to the system (these covered the fact I’m trans, explained it’s highly suspected I’m autistic & to bear this in mind, & to communicate with Lyle wherever possible), & advised Lyle to make a phone appt with my GP to sort out a verbal agreement of how the dr should behave.
This would cover not misgendering me, communicating via Lyle, giving me time to answer questions, and not blaming/mentioning mental health at appts for physical conditions.
Lyle booked a telephone appt; the dinner he could get was 2 weeks away.
I was stressing hugely on the lead up. I wrote a ton of notes, missed sleep, my depression got significantly worse, & we had several repetitive conversations about what Lyle would say, how he’d respond if the GP said this etc etc etc.
The day finally came, last Friday, & I was so excited to get it over with…
The GP didn’t ring 😑
- Just prior to this, Lyle phoned up to book a physical appt (for after the verbal contract was set up). The soonest appt we could get was a month away!!
Even when I doing -100% of the appts I should ideally be doing for all my conditions, they still manage to constantly fuck everything up… 🙄