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Assessment delays

pintsizepirate

Hi everyone

Looking for some advice here. I contacted the company my GP referred me to for an autism assessment this week to get an update. Assessment at the latest was due on January 21st. They simply replied, all assessments will now be at least a year's wait. 
They accepted the referral on the 21st of July, stating a 4-6 month wait. It took 7 months to get the GP to complete the referral. In my head, I've already waited a year. I've written to all involved: GP, Council ICB, South London & Maudsley for a referral to their National Adult ADHD and Autism Psychology Service, my council's screening service but nobody is responding. What do I do? What are my options? This was through Right to Choose. If I hadn't contacted anyone, I would still be in the dark next year. 
My life has been on hold waiting for this. My mental and physical health is being affected as has my marriage which has now broken down because of my traits. I already have an ADHD diagnosis. I'm at my wits end! Surely, they can't abandon patients like this? Don't they have a duty of care? 
Hoping somebody here may have some guidance or advice as to what my options are as the powers that be are proving to be useless. 
Many thanks in advance 
joanne
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  • I think the whole system seems to be a mess at the moment with several years long waits for adults. That is if they do them at all, in Scotland, a lot of areas simply have no service for adults at all, it's just self diagnosed or private if you can afford it. England is the only region in the UK with Right to choose.

    Though that doesn't mean you have to give up on yourself. I think there is still a lot you can do for youself even without an assessment. Talking helps to feel better about your experiences, and there are books to read to learn more about dealing with your issues. You can ask for accomodations at work even if self diagnosed, so have a think about what it is you are having problems with and I would try to find ways to help yourself in the mean time. The system is a mess at the moment so you aren't alone in finding it difficult.

  • in reply to Cinnabar_wing

    thank you. 

    you're right, its a mess and only going to get worse I fear. especially as the media peddle such a dangerous narrative. 

    I was praying for the assessment to be in jan as I have to move in the new year to Wales which is a completely different set up. another thing to add to the list but I think a chat with GP and referral to Maudsley would help in the short term. fingers crossed. 

    women are being abandoned! hitting perimenopause has been explosive and amplified symptoms beyond what I ever could have imagined. We know neurodiversity diagnosis never comes on its own so there is a long list of additional conditions I have been diagnosed with that the GP does nothing about. Just fed up of how women's health is ignored. it's not as if we've just arrived on the planet!  hey ho, we soldier on. 

  • in reply to pintsizepirate
    pintsizepirate said:
    hitting perimenopause has been explosive and amplified symptoms beyond what I ever could have imagined

    I'm at the point where it could have been a factor in my burn out, but also might not yet. I don't think I have hit it yet, but the combination is meant to be awful. I feel like a ticking time bomb. If that's a factor for you, you really have my sympathy as it must feel like it's spiralling. :(

    And yes, women's health is seriously overlooked and often we are left to make do the best we can, which isn't how it should be.

  • in reply to pintsizepirate

    Sob I knew it was going to be a big thing previously from the very limited information I knew about it, but after finding out I'm autistic this year and that it can make the whole thing, both menopause and your autism much, much worse, it feels even scarier.

    pintsizepirate said:
    the right HRT that works for neurodiverse women.....it

    I've heard of HRT but only recently listened to a podcast that said there are different types, and I didn't know being autistic would effect that too, though it makes complete sense! 

    I find getting any help from the NHS is like swimming up a waterfall, especially as I get extremely anxious about having to get an appointment and often put things off for years. I can hear the trauma in your post trying to get the right help for what should be fairly straightforward with a professional with the right knowledge.

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  • in reply to pintsizepirate

    Sob I knew it was going to be a big thing previously from the very limited information I knew about it, but after finding out I'm autistic this year and that it can make the whole thing, both menopause and your autism much, much worse, it feels even scarier.

    pintsizepirate said:
    the right HRT that works for neurodiverse women.....it

    I've heard of HRT but only recently listened to a podcast that said there are different types, and I didn't know being autistic would effect that too, though it makes complete sense! 

    I find getting any help from the NHS is like swimming up a waterfall, especially as I get extremely anxious about having to get an appointment and often put things off for years. I can hear the trauma in your post trying to get the right help for what should be fairly straightforward with a professional with the right knowledge.

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