Sick of waiting for NHS Autism assessment

[Catterpillarwithconverse]

I spoke to my GP over a year ago about my suspicion of being autistic, nothing has happened yet and I don't even think I am on the waiting list. I thing he has just been faffing about with (not) making the referral. I'm now considering going private.

What do you think of this...

www.rtnmentalhealthsolutions.com/combined-diagnostic-assessment

Is that a full diagnosis?

I had a ADHD screening along with my full dyslexia diagnoses which said I had elements of ADHD but could say for sure. So I'm considering getting the combined test with the company above.

Does it seem legit? What sort of questions do I need to ask to make sure its a proper assessment?

Thank you.

@BrightWater

“The system is broken, for sure, but there are some areas of light and hope ❤️“

Love this.

@SensationalSusie 😊

I’m not saying it was quick - it took over 3 years which frankly is unacceptable for any child to have to wait and cope this long. I think we can agree that SEN funding in schools is shocking. 🙂

@nicthalion definitely

I've recently been diagnosed with Autism and ADHD and went privately to do so. I spoke to my GP before hand and did my research/ made sure the company was registered, Nice guidelines etc. The GP said they WOULD recognise the diagnosis they just couldn't titrate any medication (for the ADHD) but I could switch to NHS prescriptions once my meds had settled and were remaining the same. It was all done online via 2 online sessions and a load of online forms. My husband was involved too. You can do it alone though.

Just wanted to share that my experience of going private isn't one that isn't recognised and I was happy with it being online and didn't feel, for me, that face to face assessment was necessary.

I was diagnosed with both privately. ADHD cost me around £4.5k for assessment and 4 months titration. Now on shared care and pay NHS prices

Autism assessment was £2k and all done online in a one hour assessment. There were 4 forms to do beforehand, one for my parents and one for my partner too and I also provided by ADHD diagnostic report, speech and language documents from when I was younger and details about my motor development toe walking etc) and 7500 word document of my struggles pre-assessment. I was diagnosed at the end of the hour :)

Hi OP, is your local NHS service prepared to accept self referrals? My GP ignored my referral request so I googled my region with NHS autism assessment and I found the NHS page for that service and emailed them and asked. They sent me a self referral form, subseuent online pre-diagnostic questionnaires and then put me on the waiting list.

Hello

Please can I ask where you paid £1000?

I was taken off the waiting list due to "a clerical error", I was out on when my daughter was 2 and she is now 5, I appealed but but got out back to the bottom of the waiting list and told 2-4 years starting over, I have contacted private and been quoted between £3000-£4000, upto £2000 is affordable for me but definitely nothing more.

Thanks x

https://www.rtnmentalhealthsolutions.com/

@MumtobeSept2022

Thank you ❤️

@MumtobeSept2022 where are you based?

South Yorkshire near BARNSLEY

Ah ok, nowhere near me, I’m sorry or I’d have recommended where we are.

Have you tried phoning the nhs dept where your child has been referred to explain the situation and what happened?

Ie phone the hospital/facility, ask to be put through to the autism assessment dept and chat through what went on. Even if they can’t bump you up the list they might be able to give you a list of recommended providers that they would outsource to.

Even if you have it done privately, you need to have it ratified by nhs later, so it’s important the private assessment confirms to what the nhs would accept - usually NICE guidelines.

You need to check that too with the NHS as to what they require and private provider as to whether they do this.

My assessment was done via teams meetings and took around 4 hours. It was private but nhs recognized so it was put onto my medical record by my GP, receive PIP and have a work accommodations plan. I have no idea why people are saying you can't get assessed online?

Did you go through with this OP?

I would be a bit reluctant becsue it seems to be lacking in assessment time.

My Autism assessment lasted 4 hours but that was after various screening questionnaires and a 30 min phone appointment.

The ADHD assessment was 2 hours but over ran.

It sounds like these are 'box tickers' whereas the assessment o had was much deeper, while I obviously ticked the boxes, it was much more complex.

Also it's very cheap. I paid around £3.5k for both of mine - which were done by different specialists.

No I've not done anything. Also GP sent me this. Wtf am I supposed to do.

Reading that it sounds like GPs in your area are saying that if you receive a private diagnoses, don't come to them for any help or support. So it's down to affordability, not just of the initial assessment but the ongoing costs (lifetime if you stay in the area and the policy doesn't change, but maybe different elsewhere?)

I know you've said your GP is off putting but they're a gatekeeper. Sadly, they won't be the last you need to navigate in this process. I've one DC diagnosed with autism and ADHD, the other at the beginning of assessment and there have been a number of gatekeepers along the way - different services stipulating completion of different parenting courses as a requirement of their involvement being a particular frustration. It feels like the goal posts are constantly moved to keep you away from the (overstretched) support services. The letter you've received is another example of that culture - GPs/NHS services are overstretched so everyone has to wait longer. The wait is unacceptable so patients seek alternative support. NHS services are further overwhelmed so they block off that route to support. In an ideal world the NHS would be looking at how to handle the increase in assessment that better awareness has led to. Instead they appear to be doubling down to keep assessment numbers at the pre-awareness rate.

Good luck with whatever you decide to do.

Yeah. So annoying.

He hasnt told me if he is going to refer me through NHS.

@Catterpillarwithconverse

As I’ve said in earlier posts.

You must ensure, prior to any ASD/ADHD assessment that the report complies with NHS procedures and that it can be ratified by the NHS should the assessment/s find you have a diagnosis.

1. Have GP refer you for assessment, find out where and the details for contacting them.
2. Phone NHS provider after a few weeks to check your referral has gone through. Ask them how long the wait list is, what guidelines/procedure they use to carry out assessment. Ask them if they have a list of private providers they can recommend if the wait time is long. Confirm that they can ratify the assessment of a private provider should you be diagnosed. If they don’t have a list then speak to a local/national autism charity for advice.
3. Once you have the assessment done the private provider should send through the report to NHS. You will then be seen and have support via NHS.

I know right to choose complicates this slightly, I would speak to an autism charity regarding this as I haven’t experience myself - followed the above.

Your GP is right that if you have an ADHD diagnosis and the report isn’t ratified to bring you into the NHS system then you do have to pay for your own medication. We were warned about this with DC so have gone the NHS route.

There will be a way through, seek advice and refer refer refer, getting on multiple wait lists if you can!!

Wish you all the best 💐

@Catterpillarwithconverse

To be clear

1. GP referral to NHS
2. Speak to NHS provider re queries, say you are considering private, can they advise etc.
3. STAY ON THE NHS LIST - do not remove yourself from it!!
4. Have assessment with private provider (usually a local one that the NHS outsource to)
5. The private provider should send a copy of your report to your GP and the NHS service for ratification
6. You will then receive a welcome to NHS service letter with sign posting to support and will be eligible for meds if ADHD.

Double check and write down info given at every point. Note the dates/times of phone calls/appointments and who you’ve spoken to.

Psychiatry UK definitely does do autism assessments through Right To Choose. They're quick, free and "valid" through NHS. Doesn't matter it's online. Full details here: psychiatry-uk.com/right-to-choose-asd/

My autism assessment was on line .2 zoom calls . through my doctor and NHS .
I went through the same procedure as everyone else in this area for NHS .
So paying for an on line autism assessment should be fine ,as long as they are clinically able to give a diagnosis at the end

Have you tried seik psychiatry we used them to get our boys adhd diagnosed. I am currently awaiting nhs assessment for autism.
Do your own research on them but we were obv impressed.

Both my children have been assessed, three years apart, different private clinics. ASD required a detailed developmental history from me; two 90 minute assessments by two qualified clinicians (one a clinical psychologist, the other a paediatric psychiatric nurse in our case); additionally forms were completed by both family members and another set completed by multiple teachers at their school and aggregated scores compiled. In addition, a computerised test (QB something or other) was carried out for both taking 30mins and requiring analysis. Cost about £1500 each as we gave up after years of waiting for the NHS/CAMHS one. You absolutely cannot be assessed on-line or even via a zoom call.

We used Berkshire Psychology and Oxford ADHD Centre, but only the latter are able to prescribe. We are still titrating medications for my eldest (18, with ASD&ADHD) and have no idea whether the GP will share care eventually and issue prescriptions under the NHS (these cost around £30-50pcm depending upon dosage) - have read elsewhere that the NHS policy has changed recently.