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NHS Right to Choose - Central East

Goldfinch

Hi everyone,

I have been on a waiting list for an assessment for a couple of months, originally informed this would be about 6 months.

All of my initial tests and questionnaires are complete, so I'm just playing the waiting game.

I received a letter from my provider today informing me that the NHS Central East Integrated Care Team (ICB) have paused all funding for assessments immediately. 

"Due to high demand for autism and ADHD assessments and wider NHS budgets, we are unable to proceed with routine new assessments for patients referred through the Right to Choose pathway in your area. This is because funding arrangements for these assessments are currently under review by the ICB. As a result, you will remain on our waiting list until we receive further confirmation regarding future funding and service capacity".

Does anyone have any experience of what this means in practice - when is this generally reviewed? How long will the additional wait be? Do I move to the bottom of the waiting list, or rise to the top as soon as funding becomes available?

In my professional experience of budgets, this generally refreshes at the start of the next financial year in April - does this mean the 2026/27 budget has already maxed out (In August!) and therefore won't be reviewed until April 2027?

I'm extremely apprehensive about this, and am considering taking myself off the waiting list and going private given the now open-ended timescales.

Parents

  • 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. 

  • in reply to Goldfinch
    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.

Reply
  • in reply to Goldfinch
    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.

Children
  • in reply to Goldfinch
    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.

  • in reply to Alexa

    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.