ADHD assessment queries: pay for private assessment or speak to GP first? Anyone else had difficulty getting rest of family on-board with seeking diagnosis? Would love to hear your experiences

[Diagnosticdigressions]

Regular NC because I've posted quite a lot of personal info on here in the past so trying not to be too identifiable.

Anyway, after a lot of dithering I've just about decided to get an ADHD assessment done - for myself and probably for DD. I'm just not sure where to start (I guess not uncommon who struggle with ordering things / prioritisation ).

Some questions for anyone in the know / with experience:

• I see that psychiatry UK offer an initial assessment for £360 if you are self-funding (psychiatry-uk.com/adhd/) - do people generally rate them as assessors? It's taken me so long to get this far and I'm very sensitive about the idea that I might just be paying for someone to tell me what I want to hear so I'd like to make sure it is a thorough process - any reviews/feedback much appreciated

• Should I tell my GP first, concurrently or wait until after I've been diagnosed? I'm a bit anxious about explaining to the doctor why I'm seeking a diagnosis because I'm sure they are snowed under and this would probably not score highly on their list of priorities. Don't want to feel I'm wasting their time.

Also, what is the best approach for kids? I've emailed the SENCO at my daughter's school for advice but have already been warned that I probably won't hear from her in a while because she is super busy. And while DD (14) really struggles with focus, losing things, being on time, general organisation etc I don't think they see that at school - on the surface she looks as if she's thriving: excellent grades, top sets, compliant in class etc but behind the scenes it's a totally different story and I'm worried about how she is going to fair in GCSE years etc So, basically, again I'm worried about us being taken seriously and am not sure whether to wait it out for the school to respond, go straight to the GP or just seek a private diagnosis and take it from there. I suppose I thought I'd try the process out for myself before subjecting her to it.

And finally, partners - did anyone else have a sceptical DH/DW to convince? How did they take you seeking a diagnosis for yourself or your DC? I think DH feels the difficulties DD and I are facing are just common day-to-day challenges and that we just need to get our act together (he says it more kindly than that but that's the gist) whereas I think he and our other DC (who does not have problems in this area) are just wired differently and therefore don't understand the challenge i.e. it's not simply a matter of trying harder / focusing better / sticking with it etc.

Any thoughts on any of the above would be much appreciated.

Me and ds1 (young adult) were assessed via PsychiatryUK. It appeared to be a standard type assessment. We both filled forms in and I sent off prior reports about ds' behaviour etc. at school.

We had no problems with dh as he was well used to ND issues by the time we were being assessed.

And finally, partners - did anyone else have a sceptical DH/DW to convince?

I am seeking diagnosis for ASD and my husband, although supportive, has no real understanding of why I want a diagnosis or what ASD means - he has a very stereotypical idea of a 'Rainman' type person. The irony is that he's always telling me this or that that I do is 'weird' but he doesn't seem to be able to connect that with neurodiversity.

We are both middle-aged, so grew up in an era when there was very little awareness of neurodiversity, which is why it's only recently 'clicked' with me - I'm not sure how to explain it in a way my husband will understand.

I'm trying to navigate the obstacle course of diagnosis at the moment, so no advice on that part of your OP, but sympathies!

Thanks for posting - much appreciated. @BarrowInFurnessRailwayStation once you'd been diagnosed through psychiatryuk, were you able to be referred back for NHS treatment through your GP?

@BoardLikeAMirror good luck with the diagnosis process. I totally understand re the stereotypical idea of what ND looks like - that is so common

I’m going through this currently, Psychiatry UK aren’t taking on any new patients right now. They’re booked up until Oct 22 and have closed their bookings for now.

I’m going with a different company who charge the same, they send out forms beforehand and then do a 2hr assessment.

Just be aware that if you are diagnosed privately you will not get any meds on the NHS.

DH is supportive but doesn’t really get it. I’ve had a long time to learn how to mask well.

PMK as I’m also considering this.

Thanks for posting - much appreciated. @BarrowInFurnessRailwayStation once you'd been diagnosed through psychiatryuk, were you able to be referred back for NHS treatment through your GP?

No. I couldn't take the methylphenidate due to side effects and couldn't afford the atomoxetine the psychiatrist prescribed instead. My area don't recognise private diagnoses, so I can't obtain NHS help and I won't deal with them because I find it too traumatic, so I'm not medicated.

Why are you wanting a diagnosis? If you think either of you may want treatment then do check with your GP first if you’re hoping they will prescribe on the NHS. Some will only prescribe once treatment has been started and titrated by an NHS service, some will recognise specific private providers which they know to be reputable and will take over prescribing once you’re on a stable dose. If you’re considering medication it’s sensible to check this beforehand and factor in the cost of private prescriptions.
Do check with your GP not just the provider as many suggest the GP may prescribe when that’s not always the case and it can then be very stressful for everyone if you’re at the back of the queue again for an NHS assessment.

For my daughter, we went to the gp first, who referred us but I also told the doctor I would be willing to go private but wasn't sure who to go to. He wrote to the nhs team and asked them and the secretary rang and gave us a private company who they use and would take as a proper diagnoses. So it's not always true that the nhs won't take a private diagnoses but worth asking who they will take one from. Unfortunately the company we were recommend closed their books last year and I can't see them opeing them anytime soon so the nhs might actually come through first. I am expecting to pay several thousand for the diagnosis.

Thanks so much to everyone who has posted - really appreciate it and am taking it all on board.

@PinkDaffodil2 I'm not really sure what I want the outcome of diagnosis to be. First and foremost, it's just to understand and perhaps get support from school in DD's case. At the moment they just think she's a model student and have no idea how much it's costing her / how much paddling under the surface is going on. I'd be wary of medicating her I guess but maybe just because I know so little about it. For now though it's more about understanding what's going on i.e. how she can be operating at a really high level in lots of academic areas but just incapable of getting a bag ready/ getting out of the door on time / working out what order to do homework in / keeping time generally.

@MynameisJune that is really useful to know re psychiatry UK. Would be interested to know what the other company is but will try to have a chat with the GP first and find out what protocol is in this area and whether they have any recommendations.

@PinkDaffodil2 sorry realised I missed out the rest of what I was going to say. I think I would consider medication in my case if I did get a diagnosis and was advised it might be useful. Not sure though and I'd still go through the process even if I thought medication wouldn't be an option at the end of it just to know

My adult child had a Right to Choose ADHD assessment through P-UK last year. They were lucky that their consultant manages their own patients titration for meds, when they have space. Otherwise it was a 6 ish month wait for the titration team after diagnosis. Having meds delivered by their pharmacy straight to the house has meant no prescription costs and they are still in the middle of titration at the moment onto their second trial of drugs. Once settled on a drug/dose the GP would be asked to share care and then they would do the usual repeat prescription/health monitoring. With the RTC option you do the assessment and then have the option to titrate to meds or have counselling but you can't do both that route.

If an assessment has been done according to NICE guidlines then even if a private diagnosis it should be accepted. With P-UK, as they have an NHS contract to do ADHD assessments elsewhere(and hence why there is a RTC option with them) there really shouldn't be any argument about accepting a diagnosis.

The experience so far with them has been pretty positive. The customer service team as well as the psychiatrist are quick to respond to queries through their patient portal and from what I've heard the team that deals with any concerns are good too. We've has phone calls on a weekend and in the evening to check on how things are after some worrying side effects were experienced.
And if they feel there may be another underlying condition or further assessment needed they will contact GP to take it further (although if a private patient I imagine could arrange a follow up/further assessment with themselves). My young person for instance is now awaiting their autism assessment as well.

ADHD360 were another one offering RTC ADHD assessments but last I heard they were taking bookings for 2024. I know P-UK have been expediting a lot of appointments so I think they've employed some more drs.

If you use it, there's a really useful FB group called ADHD/Autism right to choose England (or something similar!)

(And if it will help anyone looking - Axia do adult RTC Autism assessments)

Re your daughter: When I went privately with another of my children it was after the GP had referred them to CAMHS, who eventually did the initial ND assessment which agreed to putting them on the list. Their mental health dipped more and more with each passing month after being accepted to the waiting list as they just wanted so desperately to understand themselves more, to know what was happening with themselves, to realise it wasn't just them being the odd one out because no one liked them etc. So I went privately off my own back and the diagnoser just passed on the assessment/diagnosis information to the GP. This was for autism assessment so no meds to think about, trial or not trial.

I feel very, very strongly that it is so important for children and young people to have that diagnosis and validity of their lived experience as soon as possible, so for me that was more than good enough rationale for seeking an earlier private diagnosis than waiting for the NHS one to happen (they would still be waiting now).

Hi @NunoBettencourt thank you so much for taking the time to write all that down - it is hugely helpful and much appreciated.

Had a chat with DH last night and, having been watching DD these past few days, he now agrees that its definitely worth having the assessment done. So I'm going to start the process today by contacting the GP with a view to then agreeing with them that we will seek a private diagnosis from somewhere that adheres to NICE guidelines