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Experiences of accessing child behavioural and developmental support in the UK

4 replies

Thisisitornot · 21/05/2026 17:03

Hi everyone, I’m a mum of a preschooler and I’m also doing my final uni project on access to paediatric behavioural and developmental support in the UK. I’d really appreciate hearing from parents who have been through this: real experiences are much more helpful than anything I can read in reports.
I’m trying to understand two things:
1. Is this a real and widespread problem?
Have you ever been in a situation where your child showed behaviours you were worried about, for example, not being able to sit still, intense anger or meltdowns that felt beyond typical tantrums, sensory issues with food or clothing, or difficulty managing emotions, and you found it hard to get proper support?
I’m especially interested in:
How long did you wait for NHS services like OT or CAMHS?
Did your GP take your concerns seriously or dismiss them?
Did you try private therapy? If so, was it affordable or sustainable?
What did you do while you were waiting for support?
2. Does this solution make sense?
I’m looking into a model used in the US that isn’t common in the UK yet. The idea is that parents are matched with a paediatric OT or behavioural specialist through an app.
The specialist would get to know your child properly first. After that, you could message them whenever something comes up, a difficult week, a new behaviour, or something you’re unsure how to handle. Because they already know your child, the advice would be specific rather than general. There would also be one video call a month. The cost would be around £50 per month.
The focus is on supporting parents at home rather than regular clinic sessions, as most day-to-day challenges happen at home.
My key question: does this idea make sense to you as a parent? Would something like this have helped you? And what would make you trust it, or not trust it?
There are no right or wrong answers. I’m genuinely trying to understand whether this would work in real life or if it just sounds good in theory.
Thank you so much in advance.

OP posts:
Octavia64 · 21/05/2026 21:08

Yes

gp took concerns seriously but advised the wait for Camhs was about four years.

we did do a referral anyway but never heard from them (presume it timed about as she became an adult)

we got private therapy. Can’t say it worked but it was doing something,

at 16 she dropped out of school and was referred to nhs services and got a referral actually accepted because by now she was out of school.

i’ve been a teacher for many years and I’ve only met one child who actually got accepted by Camhs most parents just go private.

SerenitySeeker4 · 22/05/2026 16:08

As a parent, I definitely think this is a real issue in the UK. We noticed sensory difficulties, emotional meltdowns, and behavioural challenges in our preschooler quite early, but getting support through the NHS was slow and stressful. Our GP initially suggested we “wait and see,” and the waiting times for assessments and specialist support felt overwhelming.

While waiting, we did an online autism assessment through autismdetect.co.uk/parenting-autistic-child/, which honestly helped us feel heard and gave us practical direction at a time when we felt quite lost.

Your idea actually makes a lot of sense to me because the hardest part is managing the day-to-day situations at home while waiting months for support. Having access to one professional who already understands your child and can give personalised advice through messages and monthly calls would have been incredibly reassuring and far more affordable than ongoing private therapy sessions.

user1497874196 · 26/05/2026 18:30

Yes

I asked for help from gp who said he couldn't do anything without school support. School said they had no issues.

6 months later school called me in because of child's behaviour and said they were concerned, asked the GP to refer to paediatrics. This was done but then paediatrics asked the school for more info and school did not respond so referral was rejected.

No support from school since, behaviours becoming more concerning, spoke to GP again, who said if I get a school nurse report he will refer again. School nurse refused, said they cannot report on a child's behaviour as they do not know them well enough and I need to ask the school.

Its a never ending circle of rejection and currently I dont know where to turn to.

Geneticsbunny · 26/05/2026 18:57

Who would pay the £50? Why should parents of disabled kids pay even more money than they already do to access support?

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