Accepted on NHS waitlist, refused by private provider

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Just wondered if anyone had any thoughts/experience...

We had had concerns of ADHD with DD7 for a while - variable focus, tendency to flit and fidget, non-stop talking, huge meltdowns...

Broached with school Autumn 2022 when in parent/teacher consultation teacher mentioned about her being easily distracted and talkative. Despite this, he seemed surprised, but said would observe.

Didn't hear anything back, then Spring/Winter 2023, DD started to have issues in the mornings before school, huge sensory issues with clothes, would rip clothes straight off, also had anxiety about needing the toilet, would refuse to leave toilet at home. Got to the point where she was an hour late, several times a week.

Temporary SENCO got involved, agreed to observe for ADHD, also suggested ASD.

Late Spring/Summer, nothing had been done, new permanent SENCO joined. She observed and said she would do a referral for ASD, but not enough evidence for ADHD.

(Other possible ASD signs, very ritual/routine driven, physical with people - hugging, too close, etc - lower understanding of boundaries, etc, though seemingly overly sociable).

Saw community paediatrician Summer 2023, she recommended further ASD assessment and also that school refer for ADHD.

September 2023, school refer for ADHD. Up to half-term, mega school refusal, was late 1-3 times each week because of clothing issues, not wanting to go, etc. Actually had several meltdowns in the school office, which she had never done before.

Otherwise seemingly fine at school, well-behaved, meeting expectations (though I don't think she is meeting potential, until Easter 2023, she was actually greater depth for reading, now down to meeting expectations). Her teacher this year actually now says her concentration is fine, when up until this year she was "very easily distracted."

In October we received confirmation that she had been put on the official NHS ASD pathway. No word on the ADHD referral.

I arranged a private OT assessment in November, who observed in school, was mainly looking at her sensory issues, but also confirmed my suspicions that she had significant issues with writing and the way she holds her pen (which can be related to the sensory system). Concluded that she had "significant sensory modulation challenges that might be part of a wider neurodevelopmental condition."

Anyway, in the meantime I requested, via the GP, Right to Choose referrals for both ASD and ADHD assessments to local private provider.

We, and the school, filled out the necessary forms and I have just heard that she "does not meet the criteria for assessment" 🫠

We can, with evidence from a health, social or education professional, appeal this decision. Which I have done, sending them both the letter from the initial ASD assessment done by the NHS Paediatrician and her OT assessment report.

TLDR: Seen by NHS community paediatrician for initial ASD appointment, further referred and accepted on waitlist. Paediatrician also recommended referral for ADHD. In meantime, filled out Right to Choose forms for assessments by private provider. Both refused.

Any thoughts?

Hi OP , sorry to hear of your daughter's difficulties.

What was the reason the community paediatrician could not diagnose your child especially as the OT assessment and report is supportive ?

Who are they referring you on to ?

Just for context , my son got his ASD diagnosis after assessment by speech and language therapist and an assessment by consultant Paediatrician.

That's the process here - an initial appointment with community paediatrician who took developmental history, physical exam and brief observation. They then recommend, or not, further assessment, any alternative referrals, etc. That report then goes to a multi-disciplinary panel alongside questionnaires completed by myself and the school. The panel then meet to discuss the cases and either put on the waitlist for assessment or dismiss...

The waitlist (2-3 years) is for further interview with myself and, presumably, ADOS for DD.

I think that's a pretty standard process?

The OT assessment was undertaken after the initial paediatrician appointment and I arranged it privately, almost as an easy win to see what we/the school could do in the meantime to better help DD, particularly with her sensory issues.

@susansaucepan NICE guidelines are for diagnosis by MDT panel. I know some doctors will diagnose ASD/ADHD on their own but not considered “gold standard”. Most areas there is some process like OP has gone though to triage.. Usually a paediatrician (ensures any other conditions can be ruled out).

OP I would think it’s either a simple mistake (some information just has not got over/been overlooked. The other is that they think your child is too complex (although I would have expected them to say that).

A lot of private providers are ultimately overwhelmed (especially ones who accept right to choose) and so mistakes do happen.

I note you paid for a private OT any chance you could pay for an ASD/ADHD assessment? I only raise as your daughter sounds like she could benefit from a combined assessment for both ASD/adhd or even a wider MDT neurodevelpmental assessment (if DCD may be an issue as well), and you won’t get that on the NHS or right to choose.