Almost 900 people left waiting for up to six years for autism assessment from local service [NHS Forth Valley]

8 comments

1. [deleted]

2. If you count the times I was messed about, it took about 10 years for me and that started in 2001,

   Waiting list for 6 months to see if you can be put on the actual waiting list, then at least 6 months gap per appointment and at least 3 to get diagnosed, miss any appointment even if the letter gets lost in post then you have to start from scratch.

   I then moved as you do when young and that meant I was with a different authority who refused to let me even get an appointment as they didn’t have funding and didn’t like people to get assessed.

   After a few years and a different authority a wait of a year then get a letter saying I never turned up for an appointment so they have withdrawn my application and I have to go back to GP to get referred again.

   Same thing happens again.

   Finally get an assessment after moving and waiting a year and I have a panic attack turn up a hour late the assessor says I am washed, clean shaven, not scruffy and seem to be clear spoken, no way I can be autistic.

   Go back to GP and wait about 3 more years for another chance and that time luckily get told I am autistic.

   Mental health services were even worse, I have nearly suffered a breakdown on a few occasions due to multiple traumatic experiences in my life (autism mixed with not getting help for 1 traumatic experience meaning I was vulnerable means I easily had another traumatic experience)

   After asking for years and finally being referred to a CPN they arrived 2 hours late, and I even heard then chat to the reception staff and joke around how they lost track of time at lunch as were enjoying their meal, I poured my heart out to them mentioning how I was beaten up at school, had SA against me a few times as an adult etc and she stopped me talking after 5 minutes to tell me nothing wrong with me, I am normal just need to diet, sleep well and SMILE.

3. The problem for the NHS is that there is a growing trend for some people wanting to get diagnosed ‘on the autism spectrum ‘ when in some cases, basically there’s nothing wrong with them. But for those people , normally uneducated and unemployed, this is yet another opportunity to get concessions, benefits, etc. and an excuse not to look for a job. So the autism assessment is no longer, ok let’s diagnose what type of autism this guy has, but now they have to interrogate the guy to try and catch him out as a fraudster. Guilty until proven innocent. It’s not an easy job, and it takes much more time to assess each person.
   So it’s the consequence of what the undesirables have created, that mean genuine cases are stuck in an ever increasing queue for their assessment.
   Just saying, don’t blame it all on the NHS .

4. It’s honestly a fucking joke. My girlfriend is one of those people. Been waiting years to be seen and just last week got a letter to say she won’t be seen at all. It’s almost like the government want to force privatisation…

5. Same in Aberdeenshire

   The NHS is great for the acute and lousy for the chronic / long terms, due to the way it was set up. It was set up on the notion that once the country was *got well* the bills would go down. They’ve only ever gone up

6. I was lucky enough to be seen almost immediately a few years ago, then I was unlucky enough to be turned away with a ‘nah, you’re probably not autistic.’ without a formal test of any form.

7. I was diagnosed with ADHD & Autism last year at 27

   The wait is bad, but the process of referral & assessment itself is poor IMO

   Even today, the assessment is based on dated or stereotypical approaches, it doesn’t tailor to trauma, women or the individual at a basic level & a lot is left up to whether you can push through dismissals or find someone with empathy

   This is a massive reason why waiting lists are so long & the sudden boom is a lot to do with the condition finally being understood for what it is, not a mystery rise out of nowhere

   I initially went for ADHD referral, I was misdiagnosed at assessment, then finally diagnosed later on & they suggested autism referral

   Autism referral went the complete opposite, detailed, empathetic, post diagnosis support, totally different than what I had heard adult autism diagnosis was like

   I think you need to really, really know you have these conditions, be willing to push for it & it’s often left up to whether the final decision will be one made with empathy

   The risk of waiting years, for a bad result, is far too high, it’s not just the wait that’s the issue which makes me quite sad

   It only took me about a year / 2 years to do that, probably bumped up due to my symptoms & my situation at the time, that was difficult never mind 6 years or if I had been stuck with the misdiagnosis only

   Now at the end of it I have ADHD medication & two diagnosis which have changed my life, answering why it was such a mess for 27 years, it’s life changing stuff people are missing out on

   The rules around lack of shared care, let alone right to choose, private diagnosis being seen as meaningless & medication shortages mean there’s plenty of issues outside waiting times or post diagnosis for these conditions with huge demand or waiting lists

   It needs a serious update & nothing I’ve heard when talking to MSP/MP’s on behalf of other people I’ve been helping has suggested it’s coming, it’s getting worse if anything as they’re just giving up in many areas or asking patients to self refer

8. My SO just got her assessment a couple months back and the doc told her the waiting list is actually over 15 years long. And without a massive overhaul of the service it’s only going to get longer.

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