What to do after a CAHMS dead end?

[BelleBoyd]

My daughter had an initial assessment with CAHMS in 2019 that didn’t amount to anything. We waited nearly two years for it after battling with CAHMS for the appointment with the help of the school SENCO. It was a short interview with me and my then 9 yr old daughter who didn’t say anything and was quite frightened I think.
School teachers assessment was nothing as she is smart and likes to do her schoolwork, although has worked super hard to get to that point.
So anyway total deadend.
My DD now is asking to be assessed for ADHD as she feels she ‘has’ it. She’s read about it and feels her differences fit with the characteristics. She already knows she’s has sensory processing issues.
How do I go about getting an assessment? From an actual psychiatrist? What we had at CAMHS was a triage appointment only.
Would I have to go through the 2yr wait for the same thing again? Is there any other route? Any other organisation or charity that helps? School now not an option as we have gone down that route and new SENCO not wanting to help. CAHMS did advise that the school get her an educational psychologist report but they refused.
Any tips appreciated

We ended up scrimping and saving to go private, as apparently a young child threatening suicide gets you an offer of a free parenting course (we took it up and it was good but not a solution), and then a referral to another council service who never got in touch or responded to messages. Private was really worth it, once you have the diagnosis you can go back into the state system.

Do be aware that neurodevelopmental issues like ADHD (not our issue but similar) there are some private clinics that are pretty much diagnosis factories that will almost guarantee you a diagnosis (popular with wealthy parents seeking extra adjustments for their lower-performing offspring) but that's not generally going to be the best approach, your daughter may well have ADHD but there are also other conditions that could mirror some symptoms, or it frequently comes up as comorbid with other issues. If you do go private it's worth asking around anyone you know (even if they were with the NHS, many child psychologists/psychiatrists do private work also), chatting to SENCO or GP about any ideas.

Thanks that’s really helpful and what I suspected. I do think her issues are complex and not necessarily just the one diagnosis.
I’m not sure how to go about finding a really good child psychiatrist and am worried about making things worse with not getting it right? SENCO isn’t great. Will try and talk to the GP but not had a lot of luck with them in the past also. Is there a particular child psychiatry body that’s good?

If CAMHS recommended educational psychologist as a first step, could you try that? There are often local SN groups that can recommend - again, though, we did find that there are a lot of very passionate parents there who recommend specialists who agree with them, similarly we were very sceptical of some of the online reviews. Are you in touch at all with old SENCO? Also if you know of the good local children's hospital, you could Google the names of specialists there and see if they have local private practice.

One challenge we have found is that while a diagnosis helps to access more suitable support, it does also have a weight and it's one that's lifelong. That can be totally worth it if the issues are major, as they were for my DC, who was becoming violent and refusing school, but even in our case, where it's overall absolutely worth it, it's become apparent in surprising ways that putting a name on things can hinder as well as help. Googling symptoms at 9 concerns me a little, as while she may well know and recognise herself, it's also very easy to see ourselves on lists of symptoms and emphasise what fits and forget what doesn't. This is true even for adults (like with horoscopes) and even more so for children, it also means she's potentially going to be giving the 'right' / wrong answers when she's talking to a professional. It's good if she can see someone soon who can help her and you get to the bottom of this.

If she's doing well at school and you're not immediately seeking medication or major adjustments, one positive of seeing someone privately, and starting with a regular psychologist appointment vs an official assessment or a psychiatrist, is that it doesn't have to be passed onto a GP or have an official diagnosis right away.

You can then start with seeing whether her issues can be addressed for now with some CBT or coaching and then if that doesn't work or if the psych feels that there is likely an underlying condition Vs just 'traits' and that diagnosis/medication would help, you can go ahead with getting an official assessment.

I’m an Ed psych. I’d recommend a private Ed psych assessment if school aren’t willing/able to get their Ed psych to assess. An Ed psych can help unpick what’s going on if you feel it’s quite complex.

I’d absolutely echo @OverTheRubicon‘a point that I’d wonder why she’s searching this, and also be cautious about linking a diagnosis to her feeling like she relates so the symptoms listed online. I absolutely relate to the symptoms listed for ADHD, especially in girls, but it doesn’t have a significant impact on my life and a diagnosis is not necessary. When we feel like we don’t ‘fit’ it’s easy to try and find a reason and relate to symptoms we find online.

If you do think it’s ADHD, diagnosis routes look different in each local authority. For some, there’s a seperste ADHD pathway, for others it’s through CAMHS, and others again it’s through community paediatrics. I’d suggest an EP report first though because lots of other things can look like ADHD in certain circumstances eg anxiety, trauma, sensory issues etc and it’s important to untangle what’s going on.

I’d also think about what you want out of a diagnosis. Lots of LAs unfortunately offer a diagnosis pathway, that ends at diagnosis, with little further support, and I think some parents are shocked as they think a diagnosis will lead to lots of support. Again, an EP report should be able to tell you and school what support she needs, regardless of diagnosis.

Why was she initially referred to CAMHS?

Thanks that’s really helpful and will do more thinking. She was 9 at the last CAHMS interview-where she didn’t know what it was about really. She’s 11 now and has just recently been asking me about herself.
Thanks for the advice-really useful.

She was referred to CAHMS by the school SENCO as she had a lot of sensory seeking behaviours and organisational issues.

We are currently trying to get more support/understanding for ds2.

School was supportive but 18month wait for Educational Psychologist so we did go private fir that - she was fantastic- very thorough.

We were referred to an Occupational Therapist by GP - again absolutely fantastic with some practical suggestions (useful if there are any sensory difficulties)

We were also referred to paediatrician by GP. She was good but said that in our area once children are at secondary they need to see CAMHS for ADHD assessment.

We have had the initial CAMHS interview and are now waiting for further assessment. The educational psychologist report was instrumental in us getting CAMHS on board.

We started the process about 18 months ago as primary school were not supportive (I wish I had gone ahead anyway)