DD12 ADHD got private diagnosis, how to now get NHS diagnosis

[StillSittingInACornerIHaunt]

Hi all, we have a private ADHD diagnosis but I still really need to get an NHS diagnosis and am after thoughts/tips for this.

Should I be 100% honest and explain we have a private diagnosis and push for a referral onto the NHS ADHD pathway? How would that work, does it need to be a specific paediatric team?

The long story should you wish: After trying for 2 years to get a pediatrics referral via school for an NHS ADHD assessment, we went private as into year 7 DD was really struggling.

We have ADHD diagnoses in the family and she's very obviously got it.

At primary community pediatrics rejected it and refused to refer stating 'not enough evidence'. Said she should try less screen time and more physical activity 🤔.

For 12 months she has been suffering with pretty constant acid reflux and stomach issues. Following repeated GP appointments, trying acid reflex meds for 2 months etc, we got a referral to pediatrics at the hospital. This is tomorrow after a 3 month wait.

DDs private ADHD assessment was last Friday and she got a diagnosis. Psychiatric consultant who works NHS and Private 50/50. She said it was not a difficult diagnosis to make.

I want the NHS diagnosis so we can consider meds, and so she can have the option for meds via the NHS as an adult. If we can get paeds referral to the ADHD pathway it'll be about 2 years so in time for GCSEs where meds might really help.

Will paediatrics at the hospital be willing to engage with me on this or will they just want to talk acid reflux? Thanks and sorry this is long!

It's usually your GP who should make the referral. In some counties you can self refer. I'd take the private diagnosis to your GP as medical evidence and ask for a referral to NHS services, incl. medication titration and CAMHS assessment if needed for anxiety. It's your GP who will need to take over the care for any ADHD meds prescription, so best to involve them from the beginning.

Thank you. We've discussed it with the GP a few times, they agree that she has ADHD traits, but in our area the referral needs to go to community paediatrics from school.
Are you saying if I go to the GP with the private diagnosis, they could refer straight to NHS services for medication, without us needing the actual diagnosis process again through the NHS?

Rather, the school needs to request that community paediatrics refer to the ADHD pathway.
I'm in a part of England where children can only get referred for NHS Autism diagnosis if they aren't attending school and haven't for many months... So, it's really really hard to get on the diagnosis waiting list.

It will depend on where you live, and to an extent, the doctor you see. Some doctors would only focus on the issue referred for - in which case you would need a separate referral, which the consultant for the reflux may or may not do.

In some areas, the NHS ADHD service will review the assessment/diagnosis and if they accept the assessment/diagnosis as valid won’t go through the whole assessment process again. If that is the case in your case, you don’t need another assessment/diagnosis, you just need the NHS to take over care/prescribing. In some areas, there is still a very long wait for this.

You could try a GP referral to the Right to Choose pathway. You can pick a provider nationwide and ask your GP to refer. Some providers might accept you straight to psychiatric services for titration if they accept your duagnosis. It'll likely to be 1 to 2 years wait for titration. We are on the waiting list with Clinical Partners. We only had to wait 3 months for the assessment through them, but it's another 12-18 months for us for titration to begin. All meetings with psychiatrists are on zoom, so it doesn't matter where you live. But your GP will need to take over care.

Thanks all, I'll see what paediatrics say tomorrow, but it sounds like the GP might be the next step. @NellyBarney are you saying that with the private diagnosis I can go to the GP and request right to choose for the titration only and specifically?
We're still not sure if we want to try medication straight away, so I was thinking the best next step is NHS ADHD diagnosis so that DD has that and we can then consider meds if she gets to the point where she wants to.
Thanks all. It's all such a lot of effort!

If you can go straight for titration depends on what the Right to Choose provider wants to accept/do. But you certainly can use a Right to Choose provider for ADHD assessment only and so get an NHS diagnosis and then decide later if you want to go for meds - but currently, for meds, there are very long wait times and the titration process itself can be months or even up to a year long, too. But Right to Choose referrals must go through your GP. You fill out a self assessment questionnaire on the website of the Right to Choose provider and if that indicates ADHD is likely, you get asked to email the questionnaire to your GP and to request them to refer you/your child. You don't need to mention that you already have a private diagnosis and start from scratch. They'll then will send you questionnaires to forward to the school and for you and your child to fill out before the assessment.

You really need to speak with your GP first about a couple of things - about a possible NHS referral (my hunch is they will not refer since it's already been looked at), if the local CAMHS accept private diagnoses (or Right to Choose ones - not all NHS services do due to differences in assessment processes and quality across providers) and if the GP practice do shared care following titration via private or Right to Choose provider. I feel you may need to wait until your DD is older to re-assess/look at medication if this is not something that you consider now.

@YellowElephant89 did you quote me by accident? I’m not the OP.

For those with RTC diagnoses, once titrated, there should be a local pathway for ongoing prescribing even if the GP won’t accept shared care/CAMHS won’t accept involvement because they are NHS diagnoses.

Not all RTC providers have forms on their website that need completing before going to the GP. It depends on the provider.

Thanks all, we already have our private diagnosis though and didn't do right to choose.
The paediatrics appointment was good, but the upshot is I need to go back to the GP once we have the private assessment report. Thanks all for all of your help

a private psychiatrist will prescribed meds and then you can look to do shared care with the GP on NHS (not all meds will be covered)

the things to consider are:

psychiatrist recognizing / accepting the pediatrician diagnosis (assume if works 50/50 NHS private then they are following NICE guidelines and should) - or may want to do another assessment. in our case the Pead and psychiatrist work closely so no issue there and was clear from the 2 hour initial psychiatrist appt that he had ADHD

the cost - initial consult to get "on the books" and then follow up appts and prescriptions

availability - hard to find a good recommended child psychiatrist with space

the wait here is just too long to go to CAMHS - 3 years

@StillSittingInACornerIHaunt I hope you don't mind me asking but are you saying that school didn't co-operate with the ADHD assessment/didn't think she had it?

If so, can I ask how you got the private diagnosis? I just thought that you had to have school on board to get a diagnosis

Hello, my daughter got diagnosed through RTC (Evolve). She is on waiting list for medication through Camhs. Maybe try ringing them and send a copy of diagnosis and request she go on waiting list.

Hi sorry I missed this message.
Primary school supported the diagnosis and her teacher and the Senco filled in the forms and sent them to community paediatrics.
Community paediatrics replied saying there wasn't enough evidence and refused the referral. They said we should try limiting screen time and plenty of exercise 🤔
I think they try to fob people off first time to check if they're really serious in this bit of the country. The community paeds and CAMHs waiting lists are impenetrable.