Four year waiting list?!

[Brianla]

When I was referred for an autism assessment my GP was told it would be “a year, two at most”. So I was expecting to be near the top of the waiting list to be seen this year. But the autism service is now saying the waiting list to be diagnosed has expanded to four years!

My employer wont offer me support for a condition I haven’t yet been diagnosed with. There are specific opportunities for neurodiverse people which I can’t apply for. I can’t claim PIP because I tried and one of the major points in their response was that I don’t have a diagnosis. I can’t access local autism support services because I don’t have a diagnosis.

I’m increasingly struggling with worsening mental health symptoms and a four year waiting list is insane. People are going to end up killing themselves before they get any help. I don’t have the money for a private assessment. I was recommended to ask my GP about “right to choose” which has been met with a shrug and a comment that waiting lists are the same everywhere.

My gp has just referred me to these https://psychiatry-uk.com/right-to-choose-asd/ was mentioned on a thread here. You can download everything and send it to your gp. It was a12 week wait but the website now saying longer. Might be worth a try.

The GP said I’m lucky to get referred at all. Apparently if I lived just a few miles away in North Yorkshire I’d be told they don’t do autism referrals any more. GPs have been told to tell patients a diagnosis is unnecessary because it makes no difference. They aren’t allowed to refer you for autism assessment unless you’re at immediate risk of self harm or there’s a legal need for a diagnosis.

Fucking twatting bastards.

How awful.

After some more complaining the GP has agreed to send me information about Psychiatry UK, which is a online service which should hopefully see me within six months. No idea why she didn’t just refer me to them in the first place?! I would have been seen by now! What’s annoying is that she didn’t even tell me it was an option, she just referred me to the local service without giving me a choice.

Apparently when I joined the waiting list it was 18-24 months. But they’ve since been inundated with requests for adult autism assessments, especially from women who’ve had lifelong difficulties and never been diagnosed. Supposedly triggered by seeing people like Christine McGuinness and Davina McCall talking about it on tv. So I guess this is the result of not diagnosing girls - they become women who are now demanding the diagnosis they should have had years ago.

The result is that the waiting list is now four years and growing. And I don’t have “significant needs” so I’m being leapfrogged on the waiting list by people who have a legal need for a diagnosis or are at high risk, which is why I am further away from a diagnosis now than I was when I joined the waiting list last year!

My employer wont offer me support for a condition I haven’t yet been diagnosed with.

This sounds wrong to me - you shouldn't need a diagnosis to access support if you are struggling. Have you requested an occupational health referral?

My employer asked for medical evidence that I have autism and I can’t provide any because I don’t have a diagnosis yet. So in lieu of a diagnosis they asked for evidence that my needs are long term and significant, which I also can’t provide - my only proof is my say-so that I am struggling. So they said they do not consider me to be disabled for the purposes of the Equality Act, which means I’m not entitled to reasonable adjustments. I would have to contest their decision in a tribunal to determine if I count as disabled.

Basically diagnosis is the gateway to support, so the NHS delay in diagnosis is preventing people from accessing support for up to four years. According to my GP the number of people awaiting autism diagnosis has trebled since 2020 due to increased awareness, particularly among women like me who should have been diagnosed in childhood but weren’t.

They got back to me this afternoon and said we’ve checked and you would actually need to wait at least another three years. So I am definitely looking at getting referred to Psychiatry UK as they are currently quoting wait times of six months.

Is going private an option for you - cost of £1000 - £2000 in my experience?

Sadly not, I don’t have that amount of money to spend. Also paying privately doesn’t move you any further up the waiting list with Psychiatry UK. Regardless of whether I pay from my pocket or whether the NHS pays through a referral it’s still six months (which is still a darn site better than another three years).

There are other providers besides Psychiatry UK who may have shorter lists but it's obviously a non-starter if you don't have the budget for it

Do you have a union at work you could get advice from about the adjustments issue?

No there isn’t a union at work. The HR and Legal depts at my work have advised that as my requests for adjustments have been refused on the grounds of no proof of disability, I would have to go to tribunal and let them decide if I’m disabled. If I win I would be unlikely to be awarded any compensation, they would just overturn my employer’s decision to regard me as not disabled and they would be ordered to treat me as disabled going forward.

The lack of potential to receive compensation means no lawyer would represent me on a “no win no fee” basis, because if I won’t receive any money they won’t get paid. So I would have to represent myself at tribunal. Taking my employer to tribunal would likely create a lot of bad feeling at work and result in me being “managed out”.

All of this could be avoided if the NHS would just diagnose me with autism in a timely fashion. Then my employer would accept that as proof of disability, and I would be able to advocate for myself by saying “I am autistic” instead of “I might be autistic but I don’t know”. Four years is unacceptable.

It might be worth speaking to ACAS about the work issue - or if you have access to free legal advice, e.g. through home insurance, using that, because the advice you get from the work's legal department won't be independent - they are acting for your employer.

Totally agree with you about the NHS waiting lists. It is unacceptable, no other way to put it.

You could also try a post in the Legal topic here.

There is a place called the Adult Autism Practice that do an nhs recognized assessment for 700-800 pounds and it's about a 5 month waiting list. You can also pay it in installments. Might not be affordable but thought it was worth mentioning

I went to my local surgery about being referred which they did do although they warned me people can lose their confidence and be unable to face working at all. Since I did not want to feel like that and since the husband and wife g p both were of the same view I withdrew the application. It is different for me as I am self employed so I can work round it. This was a number of years ago.I am still left with zero support on it though. No friends understand. I think people can only really relate to physical conditions.