Complications accessing meds if ADHD diagnosed privately?

[SpaceInvader321]

We have an initial private ADHD assessment booked for our 10yr old child in a few weeks but some people have told me it will be impossible to get medication on the NHS if we ever decided to go that route.

I've heard of shared care but how easy are those arrangements to make in reality? We can't even get an appointment with our GP as there are never any available and our school's referral to CAMHS for an ADHD assessment was refused.

Is it possible to get the private diagnosis but not tell the NHS and somehow get in the queue for an NHS assessment?

Hi, CAMHS refused to diagnose my son with ADHD and discharged us after assessment. We since got a private diagnosis and re referred to a different CAMHS and are due to be seen next month. We are still in the titration stage of medications privately which has been going on for months but my understanding is that once we stabilise on a medication it will be possible to transfer onto the shared care agreement. My advice would be to definitely pursue a private diagnosis as it's your best chance of getting back into the system eventually, it just might not happen very quickly.

@Pheath thanks for sharing your experience. Good luck with your camhs appointment.

Another concern is that we don't have private health insurance but my company is probably going to start offering it early next year. I'm worried that if we get a diagnosis before then, it would count as a pre existing condition and not be covered so we might end up having to pay for medication ourselves, if it's required.

I wonder if I should reschedule the appointment for a few months from now to avoid that. And meanwhile still push for camhs.

Hi again, yes the point you make is definitely worth considering. We've been paying for all our meds so far and it's not been cheap at all, on top of which has been the cost of zoom review meetings with the psychiatrist at £250 a call. Because it's taken so long to stabilise my son, and I'm still not sure we're there, it's really added up. If you can wait and get costs funded on your company's private health insurance that would definitely be preferable. We don't have that option unfortunately. Good luck with it.

My 9 year old has just had private ASD and ADHD assessments (diagnosed to have both).

I spent a long time trying to get my head around it all as it seemed so jolly complicated to me

What I wanted was a one stop shop, that could assess for both, and then prescribe if needed initially, but it seemed that that was not an option at all (certainly not in the North West anyway)

I then realised many of the local/ online ADHD assessors could not prescribe meds if needed, so you would have to find a different team to do this, which looked like a backward step to me

I then swapped my search to an assessor who could also prescribe if she had ADHD and meds were suggested as I didn’t want to have to go back to the start

i did speak to my Gp in advance, and they said if the private assessments showed she had ASD/ ADHD to go back to them and they would then Refer on the NHS - I have no idea how long that will take though and what stage we will go into the process at.

I have been very careful to make sure that the private assessors follow nice guidance, and tried to make sure they also do the same assessments in their NHS role (managed it for the ASD but not the ADHD) as I have heard that makes it more likely for the NhS to accept the diagnosis.

She has just started meds and as above, it looks to be going to cost me a small fortune in getting her titrated onto the right dose etc but we are very fortunate to be able to manage that for now.

I rang our travel insurance between getting the ASD diagnosis and ADHD one as we were going abroad last week. Despite ADHD not being something we apparently needed to declare (ASD was), they wouldn’t ok the travel insurance until we had the assessment back for that as she was ‘under investigation’. Thankfully we had our final assessment the day before we flew and they did ok it. They did ask me lots of questions about when we had first started the referral process in relation to booking the holiday though, so it is possible if you have already made an appointment for an assessment, even if you delay it, the private healthcare MAY consider that in their judgement, but we don’t have private healthcare so I may well be wrong

Good luck, it is a total minefield and really stressful

We were asked to book a GP appointment and get an agreement for shared care in place before we saw the private psychiatrist for DD's ADHD diagnosis.

GP was very helpful and offered to refer her to NHS system as well - but warned it was 2-3 year wait. Ultimately his advice was to go private and stay in the private system for all appointments but switch to shared care for the meds once stabilised.

Luckily DD has responded really well to the meds and it's only taken 4 months to get the meds titrated, so we are about to move prescribing to NHS.

Not all GPs will do this, so definitely worth seeing them in advance.

Seems very odd to do ADHD assessment with someone who doesn't have prescribing capacity? Are they even qualified to diagnose?

Definitely go for private providers who do an in-depth assessment face to face - and preferably one who is/has worked extensively within the NHS.