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Hello, I’m new

GKF

Hi,

I’m new here.

i have recently been put on the waiting list for an NHS diagnosis but been told that there’s a waiting time of over 4 and a half years.

Does anyone have any advice for what I can do or any help I can get while I wait?

I am struggling with be able to get any help when it comes to education as I have recently started a degree with the open uni and as I don’t have ‘proof’ to give them, I can’t qualify for any additional help.

I am struggling mentally with all of this and I don’t know where else to turn for help

Thanks

G

  • in reply to Bunny

    AHH missed that, thanks for spotting it Bunny . Sorry GFK.

  • in reply to Somewhat damaged..
    Somewhat damaged.. said:
    If you go down the 'choose and book' option you will get a list of organisations who your GP can refer you to for free.

    Due to decisions taken by their respective devolved Parliaments / Assembly, Right to Choose (RTC) isn’t currently available in Wales, Scotland, or Northern Ireland.

    As GKF explained in a reply below, after using RTC was previously suggested, they live in Wales, so sadly don’t have the benefit of this option. 

  • Hi GKF, welcome along. Sorry to hear of your struggles. I work in NHS mental health services so unhappily confirm that the wait time you mentioned is probably about right (for an NHS service).

    People have made some great suggestions so just have a couple of tings to add. If you go down the 'choose and book' option you will get a list of organisations who your GP can refer you to for free. Like everywhere, there are good ones and bad ones. From experience, I would avoid Psychiatry UK. I have a number of illustrations of poor practice from them. Clinical Partners (another provider) seems much more autism friendly, my daughter had a good experience with them. 

    Within NHS services local to you, there will be a number of options available to you for time limited talking therapy support, they have lots of different names but if you Google IAPT near me, that should take you to what you need to find. Might also be worth googling local autism support. From my experience you don't need a formal diagnosis to feel welcomed by similar brained people!

    When you're assessed, you will receive a diagnosis and a report commenting on the reason why you meet that criteria, that's it. Useful to have that document but that's where it ends. I thoroughly recommend this book: The Autistic Survival Guide to Therapy by Steph Jones.

    She is autistic and a therapist. It's very practical and covers how to spot bad therapists, what therapy could be useful and really importantly, how to begin to create a life that doesn't generate burnouts and meltdowns. Well worth a read. 

    Lastly, legally, you don't need a diagnosis to ask for reasonable adjustments at uni. You need an assessment focussed on identifying the things you find difficult. In the work place this is known as a CAT assessment completed through Occupational Health services. When you ask for help via student support, might be worth asking if the uni has a similar process. Good luck!!

  • Hey, I was diagnosed autistic a couple of days before my OU course started. Bit difficult!!

    Re the OU: get in touch with your student support team on there. Explain an eminent diagnosis. Also, contact your primary tutor for your current/next module. Explain to them. Hopefully you'll find they understand, and help put in place temporary measures. 

    Also, DM me, if you'd like to chat about experiences. 

  • Well I had a recommendation but having read your comments about your GP surgery it may not be applicable. You're going to get them anyway. 

    First of all, if you're not super rural and there is an option to move to a new GP, I'd recommend considering it.

    Secondly, your GP should be able to write you a letter explaining your difficulties and that you are awaiting diagnosis in a manner suitable for DSA or university accommodations. I'm aware that your current one won't. 

    Other options worth looking into are:

    Look into your area's talking therapies, especially as there are some forms of self referral available in Wales that don't have to go through your GP. Might not necessarily be useful, but it is useful to get a record down about seeking help, and they may be able to suggest some techniques to help you with day to day difficulties, but they may also refuse to see you based on awaiting autism diagnosis. But especially if you're struggling, getting some counselling can be helpful even when it's not specialised.

    As the waiting list is so long, some areas have specific pathways put in place for people on waiting lists needing support (I got given a social prescriber who was a specialist in autism) so it may be worth asking the provider you've been referred to if they have any recommendations. 

    Also ask open uni what resources they have anyway. There may be peer support groups, if online, or printed resources with generic advice they can give you.

    Also if you share any specific details about issues you're having e.g. lectures or assignment structure, we can share ideas?

    Hope any of that was helpful.

  • Hi GkF welcome aboard, waiting times are beyond mad, might be quicker to move to England?