Surely this can't be right, SEND assessment waiting list

[Jennybeans401]

Dd is in Year 5 and has struggled for a long time, school think she has autism. I'm struggling with her at home, she's burned out from masking all day, needs to stim but won't do it at school and lots of other sensory issues.

I met with the SENCO a few weeks ago and she's scheduled a meeting to fill in all the forms for CAMHS. This will be in two months, it seems a long time. She then said that the school have to do two terms of intervention before they refer for an assessment as may not be needed. If there's still an area of need they can then refer.

There is then another 18 months waiting list!! Surely this can't be right?!

It’s a long time but not at all surprising when you think about it - there has been an absolute avalanche of ASD/ADHD referrals in the last 5 years and the resources just haven’t caught up yet (and Tory government etc).

Pre covid it was around a year waiting list, now it's closer to 3. 18 months isn't that bad

Welcome to Tory Britain.

Lots of us have been warning about this for years.

@CrackerIsland the SENCO said the two cycles of intervention would be over two terms, at the end of this they would then see if there's still an area of need

Yep.

I have one child who was fully diagnosed and EHCP in place by 5.

My other has been a journey.

Diagnosed global delay at 2. Covid hit. Paeds, OT and SALT shut down for 18 months. Services restarted, decided as he was close to school age to close him to all and ask school to re-refer. He started school with an EHCP. School still had to do 2 terms. By this point it was March last year. They filled in the paperwork, sent his EHCP, OT, physio, SALT reports. Confirmed he is still doubly incontinent. Rejected for lack of evidence.. finally accepted August and its an 18 month waiting list.

Yes we’re the same here. DS on the waiting list now but he’s 8, and so much closer to moving up to secondary. It’s at least good you’ve got on it at 5.

Our school is just acting as though he does have ADHD whilst waiting but it does mean they don’t have the same level of funding.

Yes same here I’m afraid. DS is 5 and has been waiting nearly 2 years already. We went private in the end but even that was a few months’ wait and I don’t feel it was as comprehensive as I understand the NHS assessment to be …

3 yrs + here

@GertrudePerkinsPaperyThing dd is in Year 5 so very close to high school

It's a nightmare. She was at another school before and they didn't follow up on my concerns so a good 8 months has been wasted. The new school are better but they are constrained by the system

Even if you do go private, our local council don't accept private diagnosis when looking at EHCP's.

I have replied on your other thread OP, but this is unlawful.

@Jennybeans401 A lot of the delay here is your SENCO. A cycle doesn’t have to be a term and you certainly should not have to wait two months just to fill the forms.

I would try getting a referral into CAMHS via your GP or Early Help. You could also try telling the SENCO that the process needs to be expedited.

And once you get a diagnosis you don't get any help.
Dc1 got no follow up because turned 18 just after diagnosis.
Dc2 follow up after diagnosis to look at interventions is 17 months after diagnosis. It's a joke but going private isn't always an option and also if you get a private diagnosis lea and nhs won't accept it in our area.
It's hard the best thing we did was advised by a psychologist she said sit down and write a list of all the things that are difficult and then look one by one if little changes will help it didn't solve everything but eased some areas of our lives. The biggest one was a strict routine. You need to make changes slowly and allow time before you make any other change. It helped us cope a little better before diagnosis.
An nhs consultant told me last week 'you need to be that mum because that's who's child will get sorted' back to quoting nice guidelines, pestering everyone on a regular basis and basically causing a fuss.

Keep pushing to try to accelerate the process but as others have said, 18 months is pretty good.
Speak to the SENCO at schools you’re looking at for secondary and see what support they can put in place once you have a diagnosis as things may not be as bad as you fear for secondary Many children (without an EHCP) arrive at secondary school needing support but the school isn’t always given the full picture re need prior to them starting so it takes a while to get support in place. The more I do they have beforehand, the better and you can put it in your application notes and supporting information.

2-3 years. But if you have cash to flash you can get diagnosed within a week or two.

'There are many practitioners and organisations, both nationally and locally, who offer private autism assessments. We strongly advise you to research who to choose for a private assessment thoroughly before doing so. Please be aware that some local authorities may not accept the results of any private diagnosis, even if they meet NICE guidelines and are qualified; they might insist on an NHS diagnosis as well.
There is no legal basis for the NHS or your Local Authority to reject a private diagnosis. Should this happen to you, you would be within your rights to make an official complaint using the appropriate complaints procedure. The National Autistic Society recommends that you stay on or get on the waiting list for an NHS assessment even if you also decide to go privately. It’s also crucial to note that just because you are paying for a private assessment, there is no guarantee of a diagnosis'.

@Jennybeans401 post on Sen board.

Assessed is one aspect but you don't need that for an ehcp.

I'd start that ball rolling myself.
Also contact everyone you can, salt, doctor...etc.

Councils might have policies which say there must be two cycles of assess-plan-do-review but that’s not what the SEN Code says (see p11 here https://www.lgo.org.uk/assets/attach/5693/EHCP-2019-vfC.pdf. Request a needs assessment from the council now, if they refuse, appeal, they often concede and do the assessment anyway. Meanwhile your DD can be moving up the CAMHS waiting list.

LAs who have blanket policies of not accepting private diagnoses and independent assessments can be challenged via judicial review. SENDIST also most certainly do accept them.

You can also complain and then complain to the LGO.

We first spoke to the school in Feb last year, by June or July DS had been referred and the referral accepted. 26 month waiting list, but the school has worked hard to get him bumped up the list - DS is school refusing since July last year, we've had the police called out during his meltdowns, I've ended up in A&E on more than one occasion, so things have escalated badly.

It's rubbish isn't it, we're over 2 years in. DS finally has a visit from specialist speech and language tomorrow, I swear if something happens last minute and it gets postponed I will scream.

That’s for an EHCNA, not an autism diagnosis.

I’m aware. The SENCO in OP’s case seems to be referring to both a CAMHS referral and a referral for a ECHNA. But there’s no need to wait for two cycles of intervention to kick start either of those.

Yanbu. It shouldn't be right.

But as others have said in reality, that's quick. At least 3.5yrs here. Up from about a year pre covid.

Our area has also removed the option for parents to self refer so you have to go via a GP or School. School said go to GP.

We have gone private.

Sorry to hijack your thread, OP, but we are in a similar situation. If we were to go private, who should we go private with? There seem to be so many options: educational psychologist, child psychologist, psychiatrist...

Is the assess plan do review and 2 terms not around EHCP/additional funding. Surely a referral for assessment isn’t dependent on this? You can usually ask your GP to refer if you have clear supporting info.
It’s so area dependent. DC2 had an ADHD diagnosis within 6 months of referral (and a few months of organising things from school etc) DC1 I’m paying for his ASD assessment and it’s a lot but it’s 3-4 years wait on the NHS and I need to protect his mental health. I’ve found someone I’m happy with and does the ADOS and ADI so a thorough standardised assessment. The fact that it’s under £2K is one of the most ‘affordable’ I’ve found too 😢I’m on both sides of the NHS situation as work clinically and it’s dire for all.