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is it me or is the NHS absolutely 'kin useless?!

Touay

I have long suspected that I am autistic and recently did the thing of going 'all-in' studying my difficulties and all the potential causes and I identified my two issues.

It turns out that doing a deep dive on a lifetime of emotional trauma is not as much fun as it sounds.... And I felt it would be good to get some help 'from the experts' on my two issues to help me sort through things and develop better strategies for dealing with people.

contacted the local iapt service, described the issues and what I needed. Was told they would direct me to relevant autism support services and counseling services.

I received an email which was little more than a bunch of links. all but one of the autism links were for children with autism or family support or simply broken links ... there may be one contact that could be of some use, and that was just a pdf of local services.

Regarding the counseling links ... none were anything to do with my issue.

Fortunately I am ok-ish working through my issues myself, ... but if this is the level of 'care' shown by NHS mental health services ...  how many people who contact them are made to feel even more desperate / abandoned / alone by the response.

I'm inclined to not even give feedback as to do so would invite retaliation, as anyone this sh1t at their job will need to hide their incompetence / callous disregard somehow. 

  • Sounds frustrating +++++ 
    May I suggest you consider requesting a formal diagnosis through Right to Choose RTC. Psychiatry-UK do NHS funded autism diagnoses which are available on RTC and the waiting list is MUCH shorter. You will need your GP’s support for the referral for RTC. 

    Healthwatch and/or an advocacy service that includes advocacy for autism may be able to assist you with this process should you decide to persevere in your attempts to get a diagnosis and/or other support for your mental health. 

    There are also a good number of autistic autism educators on YouTube. Some good ones are: Purple Ella, Autism from the Inside and Autistimatic. 

    Depending on where you live there may be some sort of autism peer support run by and for autistic people or just a general support group (often run by autism parents). 

  • in reply to Caelus

    I have been referred for an autism assessment, but i have done the deep dive thing and already know i am.  I was looking for support for how to navigate social interactions, which I had assumed would be standard post diagnosis support ... but apparently not.

    I identified another issue i have (result of my childhood) that i could really do with sorting through, and despite specifically identifying the issue, the resources I was directed to had no mention of dealing with anything like that issue.

  • in reply to Caelus

    I learned a long time ago, that you have to chase such paperwork yourself.

    You phone up after 1 or two weeks have passed and enquire as to the status of it, if they appear to be fobbing you off, you ask for the location of it now...

    When they say they've sent it, then you follow up with the recipient and make sure they have it...

    For me it was 3 months from asking my doctor to end of the diagnostic process. Of course they didn't like it, but as I pointed out, my life was on hold until I had my diagnosis...

  • you can ask a gp for a referal to a assessment...

    but yeah, they are useless.


    you know i asked 3 years ago for them to refer me and assumed they did, i recently asked the status of the referal and why its taking so long and they said "oh we see we was going to refer you but havent done it yet, do you want us to refer you?" lol after 3 years of waiting, having told them and been waiting on it... they havent even sent the referal yet, because they are useless.

  • in reply to Trisha

    Aww. I'm sorry to read about your sister. I'm trying to help a friend right now who's clearly being overdosed on his meds. (Given that his notes indicate them raising his dose and adding extra meds as a precautionary measure during his divorce then never reducing them afterwards, I'd say "overdosed" is correct use of words) 

  • in reply to I Sperg

    And if I come across as boasting, I'm not. I have basic I.T. skills, it should NEVER have been me that took point on finding the machines. They should have had that level pf control before I joined, they'd just (alledgedly) done a system wide Audit !!

    I don't like to indicate incompetence in other people, without good reason, and after a lot of consideration.

    I saw a lot during my few months on that project. Like I said as an I.T. floorwalker you go everywhere and see everything.

  • in reply to Dawn

    It's individuals not being good at their job.

    I did NHS I.T. support, as a contractor went everywhere, saw everything. 

    Shambles. Utter shambles..

    I got fired for making a fuss about the 1400 missing computers situation I encountered, but only after I'd taught their so called network back office people enough basic skills to find 1000 of the missing machines by means of reconfiguring the domain naming system, then hacking the machines we could find to make the operators register a fault so we could find the ones that were just missing leaving just the 400 that were actually AWOL.

    The guy who fired me was the guy who was supposed to be in control of the hardware, and I never was given an actual reason.   

  • in reply to Trisha

    Yes Trisha, I too love this forum as all of us are in the same boat. I have gained much reassurance from coming here, whether I post or just read.

    Ben

  • If they are NHS run you may be able to make an anonymised complaint via the PALS (patient advice and liason service).

  • in reply to Trisha

    Sometimes, it's better traveling alone.

  • No autism specialists, no funding no support. Sad reality but we're in it alone and most professionals don't get us

    That's why I love this community cause we're all in the same boat

    We understand and help each other Heart 

    More than professionals can do. 

    My older sister was autistic and sought professional help and they made her worse and she's been dead for 6 yrs now I wish she had found this community xx

    Hoping one day there will be professional support for autism but for now this community is the best and only support and I'm really grateful for it

  • in reply to Desmond79

    It doesn't help that we allow in millions of people who are a massive drain on the service.  

  • We rallied behind them, in 2020. And this is how we're repaid?

    The Wars in Afghanistan and Iraq ultimately decimated the kitty.

  • I don't think it's individuals being no good at their job, but the NHS not having the resource to be up to the job.

    The truth is, beyond diagnosis that you'll wait years for, they have no resources or experts to offer appropriate therapy for autistic people.

    I absolutely know what you mean. Our area has prompoted a new resource for autistic mental health called Dimentions. All it does is feed you links to information online that don't tell you anything you didn't already know or to other places to get more links.

    Basically, they are reduced to that because mental health services are flooded and they've got no one trained in therapies that actually work for autistic people anyway.

    It sucks