NHS Right to Choose - Central East

Goldfinch said:

I’m fortunate to probably have the means to go private, but also feel that the real benefit to me would be to really understand what’s going on in my head

That's why I forked out for a private assessment. But therapy comes first, if it would help you.

Thank you.

The NHS in a lot of areas is creaking unfortunately. I just haven’t felt like a human being at any point so far or that anyone really cares. This was my 4th day of attempting to get a GP appointment to discuss it!
I was asked if I consider harming myself or others today, and after the answer was no, that was the main box ticked for them. After that the advice was to “not worry” and “take deep breaths”, which I’m furious about to put it mildly.  

I’m fortunate to probably have the means to go private, but also feel that the real benefit to me would be to really understand what’s going on in my head, of there are any interactions with OCPD, and coping strategies. 

The diagnosis would be great to confirm in my own mind, but I’m starting to think that my limited financial resource should be down the therapy route.

Goldfinch said:

I honestly feel broken by the whole experience and the NHS just isn’t listening. 

Hugs. I couldn't bear to face the waiting lists and went private, but not everyone can do that. And, in any case, there's no promise my GP will recognise my assessment. I know the NHS is understaffed for all forms of psychology but it's hard on those needing it.

I’ve been onto the ICB about this in recent weeks and have received generic stock responses saying that they:

“Understand that recent reports about funding limits may worry people who are waiting for a neurodiversity assessment of thinking about being referred. Demand for ADHD and Autism assessments has grown a lot in recent years, and many more people are coming forward for support. To support this, we are working closely with providers to agree activity plans. Funding for neurodiversity services has increased again for 2026/27, and we are focusing this investment where it will make the biggest difference. This includes prioritising assessments for children and young people, reducing current waiting lists across NHS providers, and making waiting times fairer and more consistent”.

None of which provides me with any answers really, but it doesn’t sound good.

Today I went back to my GP, who could only provide a telephone appointment which I waited an agonising 3 hours for (ironically, given in my previous referral appointment I’d discussed this as huge point of anxiety!). I was already in a rather poor state when I received the call. 

I asked my GP if they had any information about the funding freeze. She advised “not to worry about it” and suggested referring to an alternative provider. I asked if this would make any difference and she said she didn’t know.

I also reflected that it would be most useful for me to seek some sort of therapy and coping mechanisms whilst I am waiting for diagnosis, and was there anything ahead could suggest. 
She suggested that I take deep breaths.

I honestly feel broken by the whole experience and the NHS just isn’t listening. 

Thank you - tbh getting that letter (in reply to an email from me) from the psych at the CMHT was incredibly helpful, in that it was my turning point in saying 'I am autistic' (internally) rather than they think I might be autistic. I can live with that, and will even if my current RTC application fails like the local NHS ones did. 

The difficulty, as ever, was getting that Mental Health Assessment to put me in front of the psychs - the difficulty with the current mental health services here is getting in front of the right people... once I've had that my experience has been entirely positive.

Getting to that point took decades though - I understand it's at capacity but how crazy is it that within my area there is a professional capable of making a diagnosis, making it through a series of meetings (with three different psychiatrists) but then having to refer me on to formalise the diagnosis it as that department won't allow him to make it (because it would increase their capacity). 

And yes, uncertainty - I know that feeling all too well and it's really tough. One thing I was recently told was that self identification as Autistic opens doors to all the services, not that there are many, available locally. I was signposted to some services I could access despite being the the cue for formal diagnosis. I didn't take them up on them as didn't feel I need them, but in your case it may be helpful... if you are considering counselling for example, to find an ASD friendly one, or indeed to see what is available to you in terms of support and services. 

So yes, things definitely have improved here - I've no doubt it will ebb and flow but the knowing for me has been massive. I hope that my experience does not reflect yours, and that you get updates, communication and ultimately the diagnosis you are in line to receive.

And don't give up - I've had to stand really firm to get some of the above in place... embarrassingly so at times. 

Best wishes to you. 

Sorry to hear of your disappointment. 

My situation was similar but not quite the same as yours. I was on an NHS waiting list and the waiting time was getting extended further into the future. It had taken me quite some time to decide to request an assessment. Completing the form took me a year (I have a big issue with form filling) - I also had the imposter syndrome going on too. So, I was getting rather worn down, tired and frustrated. I really needed to know whether I was autistic or not. 

I decided, after much thought, to ask for a private assessment. I could just about afford it but really would have preferred to kept the money in the bank.  

For me, it was the best thing I could have done. It was all done and dusted within 3 months and some of that was my delay. My diagnosis has been life changing and I have no doubts, at all, that I am autistic. 

It’s ok, it was in response to my own negative vent - let it out. It seems to me like the system just doesn’t work at the moment. I’m finding it to be confusing and complex. Adding in uncertainty like this only goes to enhance the mental strain I already have.

I’m considering some sort of informal therapy or psychiatry to fill the gap between the formal diagnosis, so it’s interesting to hear you’ve gone down that route.

I hope that things improve for you. 

I have done so today and await a response. I suspect it’ll be a non-answer though with little detail. The challenge for me now is dealing with the unknown timescales. 

And sorry for my negative vent - not particularly helpful other than to say prepare yourself that the waitlist may never start, or that they may never tell you that it woun't. That they've told you it has paused is a good sign though - if I ever get a diagnosis I'll be writing a few letters about my own case... (thinking MP and provider itself.) 

oh, and to add insult to injury I was first reffered for an autism diagnosis way back in 2012 (I think) before the 'explosion in referrals' or whatever happened, but the refering doctor made such a mess of it that, despite my ridiculously high scores on the test (I forget the name of), it got knocked back. 

I've been through 3 pretty severe burnouts since then, at least two of which involved the whole 'what on earth is wrong with me' thing prior to getting in front of the CMHT to unpick it all... and I wouldn't have even managed that if I wasn't such a stubborn ****. 

My experience of 'the system', from more than just this angle incidentally, is that it is totally broken. 

Can't comment on central east but I was on a list for over three years and after poking for an update via my referer discovered that the provider had stopped taking referrals from my postcode area and that I should go with my local provider.

Guess what... they were my local provider, because my local authority are so dreadfully *** that they've always farmed out to them.

I'm now on a right to choose pathway... Think I'm behind their supposed waitlist time too so am expecting a similar outcome.

The only saving grace for me is that I've been told that I am autistic by a psychiatrist who is qualified to diagnose, but can't formally diagnose within the capacity in which he saw me, which is ironic given no one in that area can apparently tell me officially that I am.

He was kind enough to writes to me and explain all this though,  which has stopped me internally wrestling with the whole decade and a half worth of 'am I autistic' thing... I am. 

It's a mess.  

How incredibly frustrating. In respect of the further wait, I'd suggest putting your question to the ICB directly.

I don't know if this NHS England link can help, but it should give the latest wating times for your area per hospital.

Delay is awful, isn't it? NHS Scotland's waiting lists were through the roof until they closed all the lists. Now, our only way to diagnosis for non-urgent cases is privately. If you do decide that's your preferred route, you can find a directory of providers under "Advice and guidance":
www.autism.org.uk/autism-services-directory