ADHD diagnosis through the NHS, can medication be accessed sooner?

[EmDon]

My 9 year old son recently got his ADHD diagnosis through the NHS after a 4 year wait for assessment. We have been told it is now a 2 year wait for medication. I was wondering if anyone had managed to speed this up... We are not even sure we want him on medication but we would like to try to see if it helps as he is really struggling and it's getting worse the older he gets, and the assessor did say we should consider it.
Has anyone managed to get an NHS diagnosis, then get a meds prescription via private which the NHS then took back over? or found another way to speed up the medication via the NHS?
Thanks!

In my experience it isn’t possible. When I looked into it, you had to have a private assessment/diagnosis to go private for medication.

Although I did find somewhere via right to choose that offered just medication but we got seen by the NHS first (2.5 year wait).

This is my responsibility at work. Your mileage may vary, depending on where you live, but usual policy is not to take over prescribing from a private psychiatrist until after titration has settled, so you'll probably be looking at a year with the private doctor. At this point, some GPs will take on the medication, again depending on where you live.

@EmDon dd was diagnosed by private consultant adolescent psychiatrist, aged 17 (CAMHS when told, said she was too old to be diagnosed with ADHD!!!!!!!!!!). She had been quite unwell and didn't meet the CAMHS bar. The psychiatrist recommended ritalin and the GP prescribed it in conjunction. It was an absolute turning point.

Due to a formal complaint, CAMHS agreed that dd would be handed over to adult ADHD services when she was 18. In stark contrast to CAMHS the adult adhd service has been fab, and for 10 years.

One piece of advice I would give is that after every interaction with CAMHS, you must write them a note outlining what was discussed, what has been agreed and the timeframe. Reiterate in meetings what is agreed and get the note off the following morning. It helps when they deny what they have told you and move the goalposts.

It's a poor show when there is a diagnosis but still no appropriate clinical intervention for the child, especially at age 9, when secondary transfer is looming.

Goodness, a year! I'm fairly early in the journey with my DS (16) and not at all knowledgeable. We went the private route for the Autism & ADHD diagnosis as he had GCSE's looming (now in progress) and time was of the essence.

Also private medication so far, but talk of approaching GP for shared care now dose is settled. We have no idea yet of how likely this will be, or when.

The timescales OP has mentioned are disheartening. I hope you get help sooner. The medication (Elvanse for my 16 year old) has made a huge difference in his focus.

Thank you for this, I will try speaking to our GP directly and go from there. I am hopeful that as his ADHD assessment does outline that it severely affects his ability to function day to day... And that it was the assessor that strongly suggested we consider medication for him... That we may be able to get them to do something.

Yes, we've had problems with CAHMS already... He actually ended up diagnosed with ADHD by the autism team (separate to CAHMS) as he did the QB test when he was 7, they decided it was fine but never actually told us they had stopped his assessment pathway for ADHD until a year later when I chased. I'm so grateful for how amazing the Autism team were in recognizing immediately that it was ADHD and going forward with the assessment anyway.
I'm so worried that with a 2 year wait for CAHMs to look at medication we are going to be entering secondary school working out dosage etc... And I just don't trust them to actually do it properly given my past interactions. I started this whole process before he even started Primary to try to get it sorted early... I really can't believe it still may not be properly managed when he is in year 7!

This was my worry (and expectation really). I thought that once the fight and wait for diagnosis was over that the next stage would follow on, I cannot believe it's a 2 year wait for treatment... Its so exhausting trying to find work arounds to just get him what he needs!

There’s no way your GP will prescribe anything, even with the diagnosis in writing. The medication has to be started by the assessor, monitored until the correct dosage is found and only then a Shared Care Agreement can be requested from the GP, but they don’t have to agree to this and may say all future prescribing stays with the assessor.

That wasn't our experience.

@EmDon it's well worth making an appointment to see your MP at one of their constituency surgeries. Explain everything and what you want help with, notably access to medication promptly so your son's education and secindary transfer experience is optimised. MP's work for their constituents and can advocate for you.

Good luck. I found dealing with Camhs almost as stressful as dealing with a very unwell dd.

As a mum of an autistic child, I completely understand how frustrating this is after waiting so long already. We were in a similar position. I know some families who used the NHS diagnosis but went private for medication titration, then had the NHS/GP take over prescriptions later through shared care. It really depends on your area and GP, but it’s definitely worth asking about. You could also ask to be added to a cancellation list in case appointments come up sooner.

Honestly you’ll need to go private. Absolutely disgraceful I know.

Many GPs will not share care with private providers. Most in our area have a statement to that effect on their website. Check with your GP before assuming they will take on private shared care. Even if they do they will require regular reviews otherwise it’s not really ‘sharing care’. You may need to budget for private meds long term if your GP won’t take over so ensure you have factored that in as they are in no way obliged to prescribe.

So - do you understand the titration process? Apologies if you do but it's not the same as most other medications as they come with complex side effects - titration for us took about 18 months three different medications and it's a long slow process - if you can afford and there is a mechanism to do this locally and privately then I would look at this. There is some noise about the huge impact of wait times on children - and its massive impact across the NHS - id have a chat with your ICB on their approach to this - I think it's called not all waits are equal?

This is absolutely awful. Why do you have to wait to get meds for your child after a diagnosis? Have you tried calling them and saying that you are really worried about school
exclusions and not being able to continue in mainstream (ham it up a bit) if your DC doesn’t get meds? This takes 10 mins. Your GP can take blood pressure, weight etc. All the doctor needs to do at CAHMS is prescribe.

i am so sorry you are going through this. I had gone down the private route and then was seen by NHS who re diagnosed and then immediately put my DS on meds. I did have to burst into tears though.