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I've been waiting for ages and I don't know what to do.

Abigail
10 months ago

Sorry if my words aren't grate, my dyslexia is really bad rite now.

I hav been on the waiting list for an assessment for I think over 2 years (I believe it was during my first year at my second college and I was there for 2 years, and I am now in my second year at university). I haven't heard anything about an assessment and it is really stressing me out. I can't find the letter I got from the doctors (I am worried it may have been thrown out when my stuff was moved into the smaller bedroom at home so my sister could have the bigger one). I remember the letter specifically saying to not contact the doctors about it because they won't have any answers and that is the only thing I remember it saying (it definatly had more but I do t remember what it said). I don't know how to go about chasing this up because I don't ha e any contact info that I can use, I'd have to go to my GP. My anxiety from this is getting worse and it feels like it is affecting my uni work, or at least my motivation to do it. I think I need therapy or something for it but I don't know what to do. I have looked online at prices and it is so expensive. I would go through the NHS but with how long I am waiting for my assessment I don't think I'll ever get seen for anything. I just want the process started. I feel like I can't ask for help in lessons and I find it hard to ask for accomodations like extensions because I don't have the piece of paper that says I have autism. I sometimes feel that I don't deserve it, even though I know I do. It's hard for my brain to accept it sometimes, and even when I am trying to explain how sertan things are affecting me, I have to force myself to get the words out.

What I'm asking:

1. How do I go about asking my GP for an update on where I am on the waiting list for an assessment as I have been waiting for so long and can't find the letter?

2. What is the best way to go about getting therapy for help with autism that isn't costly (I am on a uni budget)?

3. How do I feel valid in myself and ask for help when I need it? How do I not freeze up when I need to ask?

Any help would be greatly appreciated. Sorry if this is all over the place, I am not good at structuring my writing.

  • 10 months ago in reply to Roy

    Hi Roy,

    I contacted my GP and they resent the letter that I got sent originally. It also has the exact date of when I was put on the waitlist (6th September 2021). I sent an email to the email on the letter asking if they have any details on anything but haven't heard anything back yet. The letter does say to only contact them if I "got a private diagnosis, moved house, changed gp, or my phone number or email changed". I checked my emails and the NHS app but there isn't anything there (I had deleted a bunch of emails so I assume it was caught in that). I feel like it'll be difficult for me to get help with my anxiety for it because I go to university in Sheffield and my permanent address is in rugby (1 hour 30 minutes away from each other) so I don't know how it would work getting help with that as I prefer things like that being in person.

    Thank you for you help!

  • 10 months ago

    Hi, I’ve been waiting for a similar amount of time, the anxiety has got worse as the wait continues. If it was your gp who referred you then there will be a record of where they referred you to. I would start by asking the surgery office staff to look into it, if you decide to see your doctor for anxiety then bring the matter up then.

    When I received my original acceptance letter from the asd unit they had also emailed me, it might be worth looking back to see if you missed an email. When your referral is found I would recommend an email, I do this every 6 months to check I'm still in the system and to ask for any update.

    Just another thought, the NHS app will have any upcoming referrals shown on it and the details of your last appointment. I use the app to message my gp and to make appointments. You could message the surgery manager and ask for any information. 
    If you worry about shutting down or freezing when trying to speak to your gp, write a small list of what you want to ask

    Don't worry about spelling, if I turned the autocorrect off on my phone, you wouldn’t understand me, dyslexia is just another part of being neurodivergent.

    Good luck.