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Desperate for help - Right to Choose?

dsv2202

Hello,

My fiancé, 32m, and I, 32f, have long suspected he is autistic. His parents, who are both teachers by profession, admit that they were told by his school teachers that he was likely on the spectrum, but did not follow up on getting a diagnosis or support.

My fiancé is finding life as an autistic adult increasingly difficult, and his mental health is not great as a result. 

We recently saw the GP who referred my fiancé for an autism assessment. After completing the initial questions, he received an email saying that he is now on the waiting list to be properly assessed. The wait time is 2 years. I know this is standard, but we desperately need support for him and I believe a formal diagnosis will help us to access this. 

We mentioned Right to Choose to the GP, which he said ‘might work’, but gave us no further information on how to pursue this. We cannot afford a private assessment at this time. 

Can anyone advise on how to start the Right to Choose process? Who do we speak to? Where do we apply?

I would be so grateful for any advice.

  • in reply to Orangegnome

    In Wales we have no right to choose. I faced a 3 year waiting list in Powys. Likely I’d never have got to the head of the queue. I went private even tho I am unemployed right now and had to risk taking long term savings out. There really isn’t any support post diagnosis either.

    I would research what support you believe you need and actually what is available. I understand feeling desperate but I think a lot has to come from within the person. Understand the triggers and challenges and adapt accordingly to be as happy as you can. That may mean tough choices about what employment is taken, lifestyle choices, who and where you socialise with. It can be a tough compromise for the better life.

    There is a lot you can do yourself and access without a formal diagnosis. I take it you have completed the full diagnostic questionnaires? I don’t know which one your GP asked you to and you referred to in your post.

    I’m just being honest about my experience and the way I’ve done to think about support and where that comes from. Obviously individuals are different in their lives. I’d be interested in hearing about the issues your fiancé are experiencing and what support he feel he needs. Maybe the community here can help even before a diagnosis. I’m happy to contribute if you want to reach out to me.

    All the best

  • in reply to Bunny

    Thanks for this. The GP we saw didn’t seem to take our RTC request seriously. He sort of waved his hand and said ‘that might work’ and changed the subject totally. I feel quite annoyed now knowing the RTC referral is his responsibility. 

  • in reply to Amy23

    Yours came so quickly, I wonder if it is dependent on where you live? I am waiting 7 months now and was told 5-9 months. It’s very hard. 

  • Hello,

    I went through my GP with Right to Choose and had the Autism assessment with Psychiatry UK.

    I approached my GP in January explaining my situation and asked if I could be assessed, I filled out the initial questions then had to fill in questionnaires online from Psychiatry UK

    I had my assessment last week (beginning of April). It did surprise me how quickly the assessment came round, as I was expecting it to be longer.

    I wish you all the best with your fiancé getting a diagnosis. 

  • Hi and welcome to the community.

    Your GP is responsible for referring your partner to an approved RTC provider if he requests that pathway, rather than being assessed directly by an NHS team.

    There's more information here: 

    NAS - How to request an autism assessment > What is Right to Choose?

    This NHS article lists some providers (towards the bottom of the page) and also explains the process in more detail, including covering some frequently asked questions:

    NHS Sussex - NHS Right to Choose: for autism and ADHD assessment

    By way of a specific example of a provider, several of us here were assessed via RTC by Psychiatry-UK. They currently indicate a 5-6 month waiting time after a GP referral via RTC. Again, this page explains more about their process - other providers may differ:

    Psychiatry-UK - Right to Choose Autism Assessment

    dsv2202 said:
    we desperately need support for him and I believe a formal diagnosis will help us to access this.

    The NAS explains that "A formal diagnosis is often not required to access support, however this will depend on the kind of support that may be needed" - you might find the advice here helpful:

    NAS - What can I do while waiting for an autism assessment? > Can I get support while waiting to be assessed?

    More generally, there's a lot of additional information and advice in the NAS's Diagnosis hub that you might both find helpful.