Advice re ADHD assessment for teen DS

[Justcrackingon]

Looking for some advice regarding the best process to proceed with when getting an ADHD assessment for DS (16).
For background… DS has just started sixth form. He has always had issues with focus, concentration and organisation – enough that it’s been raised as an issue in school reports but not so that any teacher has suggested SENCO involvement, assessments etc. During his GCSE revision, DS himself said that he felt he may have ADHD and we agreed that we’d talk about it more following exams. I think that GCSEs really brought out for him how difficult he found things. We have since talked about it further and looked more into ADHD and agreed with DS that we would look into getting an assessment.
I have contacted the school SENCO, who has sent me a holding email promising to get back in touch. I have also contacted the local CAMHS, who told me that there is a 9 month waiting list currently. Given DS’s age, we are considering a private referral but this is all new to us. I’ve read that some schools/unis and also some GPs will not accept private diagnoses. Should we also go on to the NHS waiting list as well? Or is it more about looking for particular private providers? And is there anything else I need to consider? Thank you.

The NHS, LAs, school and universities can’t refuse to accept a private diagnosis just because it is private. The validity of any assessment is less likely to be questioned if you use someone who follows the NICE guidelines &/or works/worked for the NHS.

Before going private, if affording ongoing private prescriptions would be a problem, check with your GP if they will accept shared care. Not all do. Some would say you would need an NHS referral.

Thanks @EndlessLight that's helpful.

Hi, I know this is a few weeks old but I wondered how you were getting on? Did you pursue diagnosis? What does the pathway look like?

We are in a similar situation, getting through GCSEs was a very challenging time here, DC has started at a new 6th form and things are starting to unravel.

I think there are many signs of ADHD but don't know where to start. GP not keen to refer and has suggested limiting screen time and reading books, good advice but doesn't get to the core of the issue IMO. School is new so I have no contact with SENCO and teachers don't know DC. I feel time is of the essence so prepared to go private so that we get more of an understanding of what is going wrong before adulthood.

Sorry to hop into your thread but any experience or advice would be very helpful.

Hi @optimisticvibes sorry just seen this. We have pursued a private assessment. We've had the first part with a psychiatrist and now have lots of forms to fill in (parents, teachers, child) before the second part of the assessment in December. My son has been at the same school since year 7 but getting hold of the SENCO was impossible - eight weeks of being ignored. Fortunately, his tutor and senior pastoral staff in the year have been very helpful. Unfortunately, the reason for this is that it really feels like his wheels have come off. The gap between GCSEs and A-levels feels so vast for a child like him (B/C grades in old money, which back when I did A-levels seemed to be fine but not so these days).

Could your child's old school get involved if they know him well?

Happy to chat further if useful. It's a very stressful situation to be in - for us, there were always some issues around focus/concentration but it feels like things have started to unravel pretty quickly :(

Hi as an update we did pursue a private diagnosis, very thorough with lots of info requested from school and primary school reports. It was able to build up a good picture of DS, waiting for the report but an initial indication of ADHD diagnosis. The question is what do we do next!

I hope your journey has been helpful and revealing so far.

Hi @Justcrackingon and @optimisticvibes

I hope you don’t mind me jumping on here but I am in a very similar situation with my DS (almost 17) at the end of his first year of sixth form and am also looking for some advice and experience (and maybe a handhold?!) if you could share anything with me?

We are beginning to look at a private diagnosis. The end of year assessments have highlighted just how difficult the step up to A levels has been for my DS. I really worry about the year ahead but have to believe that a diagnosis will be a positive thing for him, he is keen to explore it.

Thanks in advance 🙂

Just to say that we chose to have 14yo ds undertake private assessment. The school weren't taking things seriously because his learning difficulties essentially 'weren't bad enough'. They referred us and we were put on a parenting course waiting list last July which by Christmas still hadn't proceeded. So, we paid privately.

He's now on medication, which he says is helping him so much. We're not sure yet whether the GP will take on shared care as they wouldn't give us a straight answer (told us the decision will rest with the local mental health team). So we've applied for DLA to cover costs of medication.

School still not really taking it seriously unfortunately, despite him having been working at least two grades below his predicted. Time will tell, but early signs are good.

Hi @Whatafustercluck thank you so much for sharing.

We’ve kicked off the process this week within school so will just wait and see how we get on.

I’m so glad that medication has helped your DS. Can I ask - was it a difficult process for him to find the right level and feel the benefits? And can you see the positive change that he is feeling?

Feel free to tell me to bog off, by the way. It’s just that I have had well meaning family members (of the older generation) airily suggest medication for my DS for years without anyone really understanding what they are talking about, including me!

@DollyBantry he's still undergoing titration, so I'm having follow up appointments every few weeks, submitting obs and discussing effects. But so far it's been pretty straight forward for us - 1 week at 10mg to break him in, up to 20mg following that which lasts a good 8 hours. The only real side effect for him is loss of appetite, so he has a good breakfast before taking it, then takes a protein shake to school for lunch which he enjoys, then a big healthy dinner, plus fruit and a dessert. He's lost a little weight, but not too much.

His focus and attention is much improved and yesterday he commented that he feels like his working memory had improved. We're currently trying to get feedback from his teachers to see if they've noticed the same improvements, but communication with them isn't great - even though the sen team is involved. This is my biggest criticism of the school - we're trying hard to be proactive, communicative parents (and we really value education) but very little comes back the other way in terms of feedback (except behaviour points when it goes wrong).