ASD/ADHD and Right to Choose

Albus_Scope
Albus_Scope Posts: 8,059 Online Community Team
edited February 11 in Autism and neurodiversity
Did you know you can choose who you get assessed by for autism and ADHD through the NHS if you're in England?  

With waiting lists hitting record highs over over 3 years for an NHS assessment, I thought I should highlight a way of cutting years off that wait that I've used myself.

NHS Right to Choose basically means you have autonomy over who your GP refers you to when it comes to treatment. Be it a certain company, or an individual surgeon, right to choose gives you that freedom and with so many people learning more about ASD/ADHD, wait times have sky rocketed. 

The basics of this are;

1.  Have a look online and find a provider that deals with the assessment you need. There's many out there now and all have their own way of doing things, so it's worth looking around to find a place that is the right fit for you. If you're new, you'll have to choose a local assessor, if you've already been waiting for 3 months, you can then ask for a national assessor.  Also please note the provider must have a commissioning contract with a Clinical Commissioning Group (CCG) or NHS England for the required service.

2. Get a GPs appointment and talk through with your GP why you feel you need an assessment, be honest and open with them and mention you would like to use right to choose for an assessment. Sometimes your doctor will say no, but you can look into a second opinion, or even take a supporting letter with you.  ADHD UK have a great printable PDF for this here. Their website also talks you through the diagnosis pathway, which is very useful to know in advance. 

3. The GP will then (hopefully) refer you to your chosen company, who will then contact you to arrange a proper assessment.  Most of these are now done via video chat, on Zoom and the like, so no need to worry about having to go to a strange new place. :)

Wait times can still be many months, but I was assessed within 7 month, which is much better than the 3.5 years I was quoted by my GP. 

I've included a couple of links to a few of the more well known assessors below.  Well known can also mean a slightly longer wait time of course. (Some will deal only with ASD or ADHD, others offer both.)

Psychiatry UK. 
ADHD 360
Dr J and co. (A smaller clinic and less well known)
S4D (who I used)

Some clinics will be able to offer medication for ADHD once assessed, but not all can. So if you're wanting an ADHD diagnosis, it's worth checking to make sure this can be done first. 

 
Please note you cannot use Right to choose if;

-already receiving mental health care following an elective referral for the same       condition.
-referred to a service that is commissioned by a local authority, for example a drug   and alcohol service (unless commissioned under a Section 75 agreement)
-accessing urgent or emergency (crisis) care.
-accessing services delivered through a primary care contract
  in high secure psychiatric services.
-detained under the Mental Health Act 1983
-detained in a secure setting. This includes people in or on temporary release from     prisons, courts, secure children’s homes, certain secure training centres, immigration removal centres or young offender institutions.
-serving as a member of the armed forces (family members in England have the same   rights as other residents of England.


I hope this information helps you in your search for answers.  If you have any questions, I'm more than happy to answer them to the best of my ability here.

Good luck!

-Albus- 
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Comments

  • Albus_Scope
    Albus_Scope Posts: 8,059 Online Community Team
    Hey there @bobby123! Usually the 2nd assessment should happen fairly quickly after the first one and it's best to stick with the one provider as changing mid diagnosis could cause a lot of confusion.
    I'm glad you're nearly there though, how're you feeling about it? 
  • Albus_Scope
    Albus_Scope Posts: 8,059 Online Community Team
    Ouch! Ok @bobby123 I'd definitely ask your GP about Right to Choose, 18 months between the two assessments is a very long time and I've not heard of that happening before. It may be quicker going through a completely different provider for both assessments. 
      The second assessment is pretty much just another assessor asking for any clarification for answers from the first assessment. 
  • eeL
    eeL Community member Posts: 279 Empowering
    bobby123 Mine was two years between requesting and final assessment - others tell me that's pretty typical. Some have told me I was lucky to get one at all, and I did have to fight for it. I think my second assessment was about 6 months after the first, which was about an 18 month wait. I guess different areas are working at different speeds. On the plus side, like all appointments, you hear nothing then suddenly it's next week, so you might be lucky and it might NOT be an 18 month wait for the second one! I think they always try to tell you 'worse case scenario' so you don't keep bothering people and asking. It's a big thing to do! I waited so long it was a bit of an anti-climax when I got my diagnosis. I truly wish you all the best with it! I hope it gives you useful answers.
  • Albus_Scope
    Albus_Scope Posts: 8,059 Online Community Team
    That's quite a wait between assessments @eeL, but certainly not unheard of.  I was very lucky as my appointments were a week apart thanks to Right to Choose. I got my official diagnosis on my birthday!

    But it does feel weird that you get your diagnosis and are just told to look at the National Autistic Society website and that's it. Hopefully there will be some kind of standardisation for after care in the future.
  • eeL
    eeL Community member Posts: 279 Empowering
    Gees, it's a minefield! Good advice, Biblioklept. Albus_Scope, I was really shocked to find there's no aftercare or advice after diagnosis. It seems half the charities are picking up the tab for a failed system. I don't think it's acknowledged that getting a diagnosis can be really difficult to deal with, and what even IS a diagnosis?! So I have a tick in the box, what does that mean? Six years on I'm still learning how many of the things I struggled with were because of autism. Adults were horrible to me as a child because of the things with which I struggled and I've been sad, angry, resentful to remaining family, paranoid, depressed - you kinda get chucked back out into the world and told to get on with it! I've probably learned more about my autism from others' posts on this site than anywhere else. Still learning! Thanks, Scope.
  • sunshine41
    sunshine41 Community member Posts: 37 Connected
    Hello, thank you for all the information! My GP automatically sent me Psychiatry UK website for me to do my ADHD assessment through as he said our local clinicians would be longer. I assumed that was the only company I could use. So does this mean I could use others, such as the ones mentioned above. Does anyone have experience with Psychiatry uk? Thank you so much!
  • sunshine41
    sunshine41 Community member Posts: 37 Connected
    @rubin16 Thankyou for the information. I will look into those online classes for sure as my therapist thinks I may have autism too.

    All the best for your ADHD assessment :) 
  • NDME
    NDME Community member Posts: 14 Connected
    I had a paper initial assessment in October 2022 and was referred onto a full assessment. So I have been waiting 18 months so far for my full ADHD assessment. The Sr, suggested a right to choose but said it would be via Video. I was told by someone (can't remember who) that the assessment was very long by video... hours! I couldn't face that, as I'm only just managing to force myself to do short remote video's when needs absolutely must. Are they really hours long? I can't face that, but it may be even worse in person so I don't know if I should try and get a right to choose referral. I can't stand the thought of having to look at my own face on the screen. 

    Many other online tests consistently high scoring (on different sites) as highly probable: PTSD (childhood Trauma), Body Dysphoric Disorder, Sensory Processing Disorder, and very poor executive function. 
    Would any of these be become apparent in the assessment or ADHD. I have no Idea what and online assessment entails. 

    Many thanks
  • eeL
    eeL Community member Posts: 279 Empowering

    NDME I can only comment on what my autism assessment was like, but it was face to face, not that long (either appointment) and the people were nice and friendly so it was fine, just like chatting with friends. Hope that helps, and I hope your assessment is as pain free😊

  • Scrumptious67
    Scrumptious67 Community member Posts: 51 Empowering

    @Albus_Scope Thanks for sharing this very valuable information. Is there a way to 'pin' this to the top to make it easier to find please? I know I'll be coming back to it to refer to but won't remember where it is!

  • Scrumptious67
    Scrumptious67 Community member Posts: 51 Empowering
    https://forum.scope.org.uk/discussion/comment/836805#Comment_836805

    Thanks for sharing. I've signed up. :)

  • Albus_Scope
    Albus_Scope Posts: 8,059 Online Community Team

    No problem @Scrumptious67 looks like a team mate pinned it as I was off for a few days. I'm glad you've found my post useful. 😊

  • NDME
    NDME Community member Posts: 14 Connected
    https://forum.scope.org.uk/discussion/comment/814663#Comment_814663

    Bobby, I have been waiting since April 22 for my adhd assessment. 3 months ago I asked my Dr for RTC and I chose DR SJ because they had the shortest wait times. Initially I followed up to make sure they had my referral from my GP, they said no. I contacted my GP to ask who I asked to be referred to, in case I made an error. My GP forwarded me the referral to confirm it was the right provider. Went back to SJ who apologised and confirmed they did have my referral and an appointment was quickly made for less than 1 month. So it's coming up soon. It may be worth asking…

    While I wandered around the ADHD 360 website it offered and asd360 test, so I took it out of curiosity. I know I'm weird, always have been. Anyway, it was quite an extensive test, I thought. I scored 1720 out of the highest 1860 ish points! This scored VERY likely to have asd, This was a surprise to me. I sent my results to my Dr to see if he thinks I should be referred for an asd assessment too. It would make sense to me, but not to anyone looking at me. It's all very well hidden. Perhaps take that test too.

  • NDME
    NDME Community member Posts: 14 Connected

    Just a quick update. I had my full assessment. It confirmed my ADHD without a doubt.

    Thank you for all your support.

    I wondered if anyone can advise we on RTC for an ASD assessment. All my online tests have been high probability for Autism. However I am now in my 50s and have masked very well my whole life. I know there is vetter understanding on female autistic traits and how they can differ considerably from men's. I have hesitated many times in asking for a full assessment but my gut say, just find out. My world as a loner in a sea of souls may finally make sense. The deciding factor was my last test. I did a long test on Autism360 which scored 1,720 =78% The Quotient Scorecard was : Fairly prominent Autism Symptoms. Scores of 1866+ = over 90% chance of Autism. But still I hesitate.

    How do I find a RTC for me as a female with potentially undiagnosed Autism all this time. What provider can I trust, to be upto date with the latest science regarding women, and the sometime more subtle factors?

    ⁹Sorry for the waffle.

  • eeL
    eeL Community member Posts: 279 Empowering

    I can't advise on the RTC but I'd DEFINITELY say go for assessment. You are right, older females have just had to struggle along undiagnosed and, whilst it doesn't fix it all, personally I think you're never too old to know. I would say, though, be prepared for confronting a few things if you're doing it, because it can leave you feeling angry and let down and wrongly persecuted and unsupported and judged when you analyse your life until now. But it also brings comfort, understanding, self-forgiveness, acceptance and relief and hope for better going forwards. I was diagnosed your age and felt a fraud for even asking the question, because when you've masked your whole life you become so good at it that people will tell you 'There's nothing wrong with you' (not that I see autism as a 'wrong'!) or try to convince you that there's no point 'at your age' because your life's considered over! Don't listen to them. I went with my gut instinct, terrified that I either WOULD be autistic (which I couldn't change and didn't know how to address so it felt like a death sentence) AND terrified that I WOULDN'T be and would look silly, have caused a fuss for nothing, still got no answers and encouraged all the people who said I was just looking for an excuse for my inability to be a successful human being. I think alot of people late diagnosed would agree that they always knew they were different. If you know, you know. Go with what you feel!

  • NDME
    NDME Community member Posts: 14 Connected

    Thank @eeL Your post completely resonates with me... all of it. I doubt I'd get angry, I never feel anger but sadness maybe. I'm sure I would reflect a lot, and feel sorry for myself for a week. Then I'd kick my own butt, and make some kind of plan to embrace it and give myself a break. The sad part for me being, I'm an ideas factory. I problem solved like crazy. I work like a machine when I'm able to focus. So I know I have use. How to get other to see that so I can work is the real issue. My work ethic is so strong and not working is just not me. I need to be useful, in a distant or one on one way. 🙈

    Thanks for the input.I think I'll brave, asking the Dr.

    I hope you're doing okay? 🤗

  • eeL
    eeL Community member Posts: 279 Empowering

    I'm exactly the same! When I had my assessment the assessor said I was so autistic she was surprised I worked, but NOT working just isn't for me. Don't worry, you just have to find the right bosses - somewhere is someone who loves your drive and work ethic! I also love problem solving, it's just that bad bosses see identifying problems as being a nuisance and complaining/ trouble making (because you force them to confront a problem they'd rather ignore), whereas good ones see it as improving their business / productivity/ security, and making positive changes. It says more about the bosses than it does about us. Knowing that doesn't make it any easier, but someone would love a hard worker and constructive thinker like yourself! You just have to find them. Keep looking!

  • Catherine21
    Catherine21 Posts: 2,457 Championing

    I recieved email saying adhd questionnaire but was blank will phone tomorrow does that mean I'm closer to assessment

  • Albus_Scope
    Albus_Scope Posts: 8,059 Online Community Team

    Every day will take you one step closer to an assessment @Catherine21 but I'd be unable to say what the blank email is about. Will you let us know when you call?

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