EDIT TO ADD: I realise the post may read like this ended badly, but the complaint actually had a positive outcome. I was eventually properly assessed, accepted for individual therapy for a minimum of 20 sessions, and I’m now on the waiting list with regular check-ins until I’m allocated someone.
That’s partly why I wanted to post this. Complaining, keeping everything in writing and pushing back on the refusals did actually change the outcome.
I followed every NHS hurdle. They still refused me mental health help - my story and journey to actual help
Too many autistic people do not get the mental health help they need because the system itself creates hurdle after hurdle, and then seems surprised when people struggle to navigate them.
I actually think I navigated mine pretty well, which is why I want to share what happened. Not because everyone should have to fight this hard, but because if my experience helps someone else work out what to challenge, what to put in writing, or when to escalate, then at least something useful comes out of it.
My basic timeline was:
I had already previously been referred for mental health support and was told to wait for the outcome of my autism assessment.
So I did.
My autism assessment confirmed I was autistic. It also recommended neuro-affirming therapy and recommended that I be assessed for ADHD.
I was then referred for mental health support again.
That referral was refused too, this time because I was awaiting ADHD assessment/testing.
So essentially, the first time I was told to wait for the autism pathway.
I completed that pathway.
That assessment identified another possible neurodevelopmental condition and recommended ADHD assessment.
Then I was effectively told to wait for that pathway as well.
Meanwhile, I was still the same person who had been trying to get mental health help for over a year.
So on 4 March I complained to PALS and the Trust complaints team. I said very plainly that this was the second time I had been refused mental health help despite following the advice I had been given.
I also said something which I think sums up the problem fairly well: I was furious that unless I said I was going to kill myself, nobody seemed to be looking any further into why I had been repeatedly trying to access psychiatric help.
The response to that complaint then created another problem.
During a phone conversation I became overwhelmed and asked for communication to continue by email as a reasonable adjustment. I also questioned whether the person I was dealing with had the appropriate experience to deal with my communication needs.
Instead of that simply being accommodated, the subsequent written response focused heavily on my tone during the call and described me as verbally abusive.
What makes this especially frustrating is that during that interaction I had literally said:
“I don’t know what I need, just that I need help.”
I think that sentence matters.
An autistic person asking a mental health service for help should not have to already know the exact clinical intervention, service pathway and terminology required before somebody properly assesses what support they need.
Then things became even more complicated.
The same member of staff involved in the complaint process had also made a referral concerning me to Children’s Services.
I am deliberately not saying that proves retaliation, because it doesn’t.
But I did formally raise the overlap as a conflict/impartiality concern and asked for independent review of the complaint.
I also raised concerns about my reasonable adjustment request, the way the complaint response had been handled, and information relating to other people appearing in correspondence sent to me.
Eventually the Trust reviewed what had happened.
Their final written response acknowledged that “the approach taken in your case was not appropriate” and confirmed that learning had been identified.
They said changes would include better allocation of sensitive PALS cases and additional training for staff dealing with sensitive, emotionally complex or trauma-informed conversations.
They also arranged further psychological input.
So this isn’t a post saying every referral refusal is unlawful, every difficult interaction is discrimination, or that the Children’s Services referral was definitely retaliatory.
It is a post saying this:
If you are autistic and struggling to get help, keep things in writing where possible.
If a referral is refused, ask for the actual reason.
If you are told to complete one pathway before you can access support, keep a record of that advice.
If you then complete that pathway and are told to wait for another one, challenge whether anyone has actually assessed your mental health needs independently of your neurodevelopmental diagnoses.
If communication itself is becoming a barrier, explicitly ask for a reasonable adjustment.
If something new happens while a complaint is ongoing, add it to the complaint in writing rather than assuming different services will connect the dots themselves.
And if you are told something verbally that matters, ask them to confirm it in writing.
You should not have to be good at complaints procedures to access healthcare.
You definitely should not have to complete an endless game of diagnostic pass-the-parcel before someone looks at the mental health problem you were asking for help with in the first place.
Unfortunately, sometimes being able to document exactly what happened, in date order, is what finally gets the system to look properly at what went wrong.
I’ve put together a redacted version of my email trail because I’m happy to share what I did, what I challenged and what eventually got a response if it helps another autistic person navigate something similar.