ASD/ADHD and Right to Choose

Albus_Scope

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- 

bobby123

I have my first appointment for autism coming up in June this is 18 months after I saw my doctor, after my first appointment can I go through right to choose to get a faster second appointment.

Is there any other way of getting a faster second appointment as that will take another 18 months

Albus_Scope

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? 

bobby123

Hi, the woman said the second assesment will take 18 months to come through after the June one, so around 2 years from now

Albus_Scope

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

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.

bobby123

Thanks

Albus_Scope

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.

Biblioklept

I always recommend people to Right to choose but I saw recently GPs are beginning to refuse shared care after diagnosis of ADHD, so won't fund medication through the NHS or titration and some people are having to continue to pay privately for medication after using right to choose. I haven't looked into it in depth but have also seen suggested they plan to stop allowing it (the medication following titration) via right to choose. If anyone does it definitely double check that first!!! 

eeL

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

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!

rubin16

I was lucky as when I had my autism assessment 13 years ago it only took a few months from referral to assessment and they did the whole assessment over a course of a few weeks and got the diagnosis quickly. I also had support put in place, and had after diagnosis sessions to learn about autism in more deph and how it can affect you. I still attend some sessions over zoom and we do different topics each month on how autism affects different aspects. Since diagnosis I have learned so much about myself becuase of these sessions.

I will post the link (If allowed) to the online sessions you can book through eventbrite for those interested in learning about autism and how to grow your confidence in it: https://www.eventbrite.com/e/grow-confidence-in-your-autism-tickets-772320610737?aff=ebdsoporgprofile&keep_tld=1

I am still waiting for my official ADHD diagnosis though so waiting to be fully assessed for that, however my psychiatrist who does the ADHD assessment has said that I 100% have it, she just needs to do the full assessment with me and then talk about different medication I can have.

sunshine41

@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

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