The private clinic where my son was diagnosed with ADHD has closed down. WWYD?

[FourBoysAndAFeline]

One of my children was referred to CAMHS by his primary school 4.5 years ago with possible ADHD.

We waited around a year then covid hit, so we went private as things were really bad.

Psychiatrist diagnosed ADHD, and was against the usual go-to medication because he had tics, said they might make them worse.
She said there's other meds but let's wait until he is at primary school because the side effects can be a bit grim at that age (8) at the time.

1 year ago he saw the ADHD nurse for a QB test and we are no closer to what happens next within CAMHS.

Things are utterly shit at secondary school.

I tried to contact the private clinic to revise the option of the "other" suggested drug - no idea what that is. Only to be told the clinic is closed entirely. It doesn't exist anymore.

So is that diagnoses and drug choice worth nothing?

Do I go private again?! I can't afford that?

God knows when we will see anyone in CAMHS, all the while school life is falling apart and that's with a very supportive SENCO.

Is it not a job for your gp now? Bear in mind that if you had been through camhs in the first place you would literally have got a diagnosis and wave good bye. There's no ongoing support ime.

What were the results from the QB?
Who did it? Camhs? So have you asked for a feedback?

I know there is no ongoing support.

We have reached rock bottom and want to try medication, as mentioned in my OP.

Why would it be a job for my GP?
He wouldn't know what to prescribe.
A psychiatrist has to decide medication, decide the amount, change it to suit him and when it reaches that point, the GP can prescribe.
we are a long way from it being the "job for a GP"

CAMHS did the QB test. He scored on the 98th centile for hyperactivity.

The feedback (from the psychiatrist) is what we are waiting on. 12 months from the QB test, 4.5 years in all...

Have you got a copy of the diagnosis? Was it sent to your gp at the time?

If so the GP can refer to a psychiastrist. My gp was really persistant when it was clear meds were needed.

I think if you have a letter confirming the diagnosis, the GP will refer to the psychiatrist for meds.

We do have a copy, yes.

Wouldn't the psychiatrist be the very same one we are waiting on through CAMHS?

I don't think you can get a psychiatrist in a different way via the GP.

Your GP won’t prescribe however if you get them any documentation regarding the diagnosis too could ask them to chase up the CAMHS referral and see if it can be expedited? Or you could try contacting them directly or via school.
I’m a GP and get a lot of requests to chase up appointments which aren’t really appropriate but 4.5 years waiting is terrible even for CAMHS!

This is what I meant really.

So similar here. Maybe this will help.

NHS diagnosis in primary - no meds
Discharged as no meds meant no aftercare or support

Secondary mid point - dc begging to try meds. Email to camhs with copy of diagnosis asking to step in to the 'pathway' to try meds and making it very clear we had a diagnosis.
Appointment six months of persistence later, meds in place, GP prescribing, camhs paed reviewing every six months.

Yes it will be the same one but a gp hasseling too helps. We also rang daily to see if there were any cancellations.

Yes, DS1 has a repeat prescription with the GP for his meds but gets checked by psych three monthly as he has other medical issues that the meds can effect.

Do you know the name of the psychiatrist who treated your son? I have experience of this. If the psychiatrist is still practicing make contact with him.

I do.
She has a very particular name and I Googled her, she has worked in two practices since and she no longer works there.
So three practices in three years.

She was a bit bonkers to be honest.

I might have to try the GP but I'm not holding my breath tbh.

Op you can contact your gp with a copy of the dx and ask to be referred onto nhs consultant list for meds. You hopefully should not have to go through dx again.

You can explain how difficult things are in secondary currently when you ask for the referral. Based on our experience it might take over 6 months even if they accept it’s urgent.

There is the option is to go private again in the meantime while you are waiting for an nhs referral to come through. You could go to a different private provider to get the meds. Then you go into the nhs when you get the appointment.

In case it helps we paid £250 for medicine reviews. Then £60-80 per box of medication each month. We needed quite a few reviews when we were moving up doses on the meds. I think about £1,000 to £1,500 roughly. You might need a longer first appointment as a result of moving provider.

Might be useful to look at my medication thread www.mumsnet.com/talk/special_needs/4466553-Starting-Medikinet-any-experts-around?page=26&reply=123808779

I can't believe I automatically assumed it was a man. 🙈

Give the GP a try although I'm not sure there's much they can do. Was the report ever sent to the GP? I would make contact with the psychiatrist directly and ask how you can arrange an appointment with her.

When my son was diagnosed privately about a year and a half ago, we needed to make sure our diagnosis was NICE compliant so that it could be accepted by the local NHS neurodevelopmental team. (Hopefully yours is)
We went through our GP, who submitted copies of our diagnosis and a referral to the local NHS team. And now we get medication refills and check ups via the GP surgery.

Here your meds come through CAMHS unless like us we have a private diagnosis and a shared care agreement with our GP, so we see her (was twice a year but now over 18 so once a year) and she writes to our GP who then issues the drugs monthly. Some GPs don't like doing shared care agreements so you need to find out if yours do before you look privately again.

Here you can only move to shared care once the dose is stable. So you are looking at a few private months here - took us over 6 months before you can move to shared care

If I were you I'd ask the GP to refer to a psychiatrist who knows what they're doing re- prescribing firm someone with Tourette's and ADHD and having both conditions does make things trickier. Yes, you'll have to initially pay but in my experience there is no point in waiting for CAMHS or the neuodevelopmental team.

My son has tics too so stimulant meds are off the table. Atomoxetine is probably what they’ll suggest. We couldn’t get my son to take it though as he has ASD/PDA also.

Yes that's exactly how it works here too.

I called the GP before we went private as I'd read here and heard at work that GP's don't take a private diagnoses seriously.

But the GP said once the dose is stable he will take the script.

Im absolutely going to try the GP.

I didn't think that was worth a bash, but you lot have kicked me up the bum. Thanks 👊🏻