To get a private diagnosis?

[Dontbeadobber]

DS is 6, has been seeing a paediatrician since he was 2. He finally got referred for a diagnosis of ADHD (inattentive) in December and I just got notification that he’s been accepted on to the pathway, however the waiting times are now standing at 2 years. I did already know this but in real terms I hadn’t ever considered the impact for him. He’s in year 2 now, by the time he’s assessed he’ll be halfway through year 4, which seems like a lifetime academically. That’s a lot of time to not be meeting your full potential when the right medication could make such a difference for him.

So, AIBU to pursue a private diagnosis? I can afford it and I know about checking that the diagnosed is accredited but what are people’s experiences of the NHS taking over the treatment plan post diagnosis? Will they do it? Was it smooth sailing? Thank you.

That should have said checking the person doing the diagnosis is accredited

I have heard about some people doing that and apparently private diagnosis aren’t accepted by some schools / LAs so it’s worth checking yours does. I’m not saying this is a fact, just what I’ve heard.
If you’re just wanting it for medication, is that not something his paediatrician can prescribe?

@RussianSpy101 thanks for your reply. I’m not too concerned about school accepting it at the moment, he’s at a very supportive school and gets the help he needs even without the diagnosis so that’s not really an issue. I’ll likely stay on the list for an NHS diagnosis so by the time he’s going to a different school he will have that in place.

Yes, it’s more about getting the medication. His paediatrician won’t prescribe without a diagnosis, but agrees that he will probably need it

What an utterly ridiculous situation. I would pursue the diagnosis privately if that is what will best help your son.

My DS was diagnosed privately for autism and now I’m going for a private ADHD assessment too. He is also seen privately by a child psychiatrist for his anxiety. I think there can be disadvantages about being totally private, mine is also at private school and we pay for everything with no govt support of oversight at all. But if you want a quick diagnosis, it’s your only option. Good luck.

@Tiramysu it is ridiculous. Everyone knows he needs it but we have to wait 2 years… the mind boggles!

@Hellokittyninja thanks for your reply, it sounds like you’ve been around the houses a little bit! It’s crazy that we have to resort to these measures. Hope your son gets sorted soon.

Has anyone actually done this and then been discharged to GP for medication? I don’t think I can afford to pay ongoing private costs for medication on top of the diagnosis, that’s my worry.

I live in Scotland, so don't know if the rules are the same across the UK. My son was diagnosed privately with ADHD( inattentive) and prescribed Elvanse. For the GP to prescribed this, my son still needed to be seen by an NHS psychiatrist, who confirmed the diagnoses and approved the Elvanse. This took 2-3 months during which time we had a private prescription for the medication. Some health authorities will I believe do shared care, but in ours the GP was not allowed to prescribe without approval from the psychiatrist.

I think we were seen relatively quickly by CAHMS because we already had the diagnosis. The private prescription was about £100 for 28 days supply of tablets.

@Queenoftheflumps02 this is really helpful, thank you. I guess the first step would be to speak to my GP and see if they would be happy to do shared care?

Yes you need an nhs diagnosis where I am to get the GP to take over prescribing......Would you be able to pay for the private prescription for the next 2 years OP? If so then go for it

Having been there, done that got the t-shirt x two. Absolutely.

Refer to them as independent assessments though rather than private as it doesn't rub in quite the same way.

And make sure they are NICE compliant

Do it , make sure they follow nice guidelines otherwise it will be wasted money!

@Kitkat151 thank you, would you mind saying the general area you’re in? I’m north west. I don’t think I could afford private meds for 2 years 😔 could probably stretch to 3-4 months.

@Mumofsend thank you. Did you manage to get medication prescribed through the GP with your ‘independent’ 🤣 assessment?

"I guess the first step would be to speak to my GP and see if they would be happy to do shared care?" Yes.

I would speak to the GP, express your concerns about timing and ask how you could have the private consult then have any recommended meds prescribed until the NHS consult occurs.

I'd then have the equivalent conversation with your paed consultant. I'd also ask both for recommendations about named practitioners.

Good luck.

@Zilla1 that’s really good advice, thank you, I’ll do that today

Independent reports are fine. If you ever need to go to tribunal to get provision, the panel absolutely will regard them as accurate evidence of the child's needs. So in a way, what the LA does or does not accept isn't relevant if they are going to be difficult anyway.

Good luck.

[quote Dontbeadobber]@Kitkat151 thank you, would you mind saying the general area you’re in? I’m north west. I don’t think I could afford private meds for 2 years 😔 could probably stretch to 3-4 months.

@Mumofsend thank you. Did you manage to get medication prescribed through the GP with your ‘independent’ 🤣 assessment?[/quote]
I’m NW too ( but itsa big area😆);.....Check your local CCG ....where I am a GP would not prescribe as the medication would not be funded by the CCG if it’s a private diagnosis.....may be different for adult diagnoses though

I think that is a great idea, OP. The sooner, the better. In our experience, we noticed huge positive strides in school after diagnosis and medication began. Before diagnosis and medication he was struggling and his self-esteem was poor and now he is so confident and is one of the top students in his class. Early diagnosis = early intervention 😊

Best of luck, OP

It's why I said I'd have a chat with both the GP and paed. See what the GP says and if primary care prescribing protocols would cause a problem then see what the paed says. It may be the independent assessment delivered to the paed for consideration leading to the paed recommendations to the GP would then be appropriate for GP prescribing, if that makes sense?

[quote Dontbeadobber]@Kitkat151 thank you, would you mind saying the general area you’re in? I’m north west. I don’t think I could afford private meds for 2 years 😔 could probably stretch to 3-4 months.

@Mumofsend thank you. Did you manage to get medication prescribed through the GP with your ‘independent’ 🤣 assessment?[/quote]
We haven't got down the meds route but our GP do do shared care agreements for other parents that I know of.

Yes 💯 would do this if affordable for you. PP have made some great points, especially about lining up your GP for shared care (or finding one who will). I would just add:

• GP will only take over prescribing once meds are stable. My son is a year in (with CAMHS) and we're still trying different meds. They definitely make a difference but we're still weighing up what's best for him (tho he has complex needs so that is also a factor). Might just be worth bearing in mind.
• that said, the diagnosis itself (not just the meds) is very valuable. You could use it to apply for DLA if your son requires additional support at home, which might help go towards the cost of private meds.
• if he needs additional help at school, have you applied for an EHC (education, health and care) needs assessment? The diagnosis and report would be evidence of his additional needs, and it might help him get the additional support he may need.
• also, my understanding is that you'd want to make sure not only that the professional is accredited but also that the assessment and diagnosis is undertaken in a way that follows the guidelines (NICE guidelines?). Because a professional may be accredited/registered but their assessment not follow the guidelines, if that makes sense?
• one good tip for challenging people/bodies/orgs who 'dont accept' independent diagnoses is "if you have a concern about the integrity of this professional, their assessment and diagnosis, you need to register it with the HCPC. Unless you do so, we can presume that their professional registration and adherence to the NICE guidelines satisfies all that is required for a diagnosis and we can proceed with XYZ."

99.999% of the time, they are just fobbing you off and their argument will fall with the most basic of push-back.

That said, probably still worth doing your due diligence anyway - if you can choose a professional who works in the NHS still then that's always a clear winner because there's no question mark over their ability to diagnose.

Good luck!