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Back to square one

Acquiesce

Pardon the minor vent - after chasing (again) discovered this morning that the referral made three years ago for ASD assessment is back with local services as the place I was referred to stopped taking assessments one year ago. 

It came as no suprise to find out there are no local services, and so referral via right to choose via GP is my only option. My previous referral came through CMHT and was more likely to be taken forward as a result. 

Unbelievable that you can 'stop taking referrals' two years after it was made, dump it and not even bother to tell either the person who submitted it or the person waiting for the assessment. 

Guess what my predicted wait time is now, should it be taken forwards... Yup, three years. 

Super. 

  • So bit of an update here, which I'm not sure is more helpful than my initial response to it...

    Told by my GP this morning that the CMHT Dr who wrote that I am 'highly likely to be autistic' or whatever the wording was and referred me to a particular diagnostic team (which he said are the best he's come across and put together a really useful report detailing impacts/strengths/guidance) is actually qualified to formally diagnose.

    GP thinks he is probably obliged (by his service) to use that 'highly likely' term/not to diagnose specific conditions due to the nature of the service. GP is going to write to him to confirm this; I'm toying with emailing him too, though really I probably have enough that I need here if I can just bend my ridiculous brain around the fact that I've been diagnosed by a qualified person but dont have that definitive piece of paper... yet. 

    I'm back on the list via right to choose and the GP thinks he knows one with shorter (than 3 years) wait times... Meanwhile what I initially thought was a bit of a kick (in that I really just need that piece of paper with my name on and the condition to feel I can move on) may actually be something of a blessing: qualified and experienced shrink and his junior team all stated autism following MH evaluation. 

    It's autism isn't it?!

  • in reply to pietro_21

    Thanks - I think the most frustrating thing is how I've been bounced back to the first step. Given I was first told I was very likely to be ASD almost twenty years ago in the grand scheme of things another wait isn't the worst thing ever to happen, and there's plenty worse than me out there.

    I'm kind of waiting on formal diagnosis to enable me to fully accept the ASD - whether it will remains to be seen, and maybe I should just try to embrace what I've been told by lots but haven't been able to fully accept to this point... I'm trying but haven't really been able to so far. 

  • I'm sorry to read this. It does take that long, I had to chase mine after a couple for a similar reason. It was only because I picked it up I was rereferred, I think its to do with a lot of these services being council run or merging with other services. In the end it took about 3.5 years - I have heard stories of it taking over 4 years. 

    Be ready if/when you are diagnosed of what to do next as a lot of questions can be left unanswered.

  • Hello  

    I am sorry to hear you have experiences this. I can understand how frustrating it must feel to be waiting for your assessment and feel as though you are back to the beginning of the process. You may find it of use to have a look at our information on what you can do in the meantime whilst waiting for an assessment. This includes social care support you may be able to receive and advice around employment: https://www.autism.org.uk/advice-and-guidance/diagnosis/assessment-and-diagnosis/what-can-i-do-while-waiting-for-an-autism-assessme

    I hope this is useful,

    Chloe Mod

  • It's beyond frustrating. Unclear as to why I wasn't notified - maybe as Im no longer under CMHT, though I asked for an update six months ago (via GP) and never got one so assume it's the usual 'system' rubbish. No one cares ultimately, other than me. 

    But yes, I'll carry on waiting as there's nothing else to do. GP is going back to the original referral people as well as starting a fresh, will also take it to regional board. There won't be a speeding up of the process though, unless something comes through quicker with right to choose. 

  • While it probably won't help speed up your assessment, it might be worth writing to your MP about what has happened. I'm sure you're not the only person who has been affected by this, and if nothing else it might shed some light on why and what the causes are.

  • I can imagine how frustrating this must feel.

    It is hard to have such patience, but there is no alternative.

    It seems very poor there was no re-referral. It seems unlikely the GP was not informed. 

  • It's pretty shocking that they didn't even bother to tell you, as at least you could have been a year into your next 3 year wait. I hope you are managing in the mean time.