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ASD - private versus NHS assessment

14 replies

chocolateandbananas · 09/03/2022 11:51

My DD is on the waiting list for a ASD assessment - not sure how long this will be but not quick I imagine. My DH thinks we should go private to speed things up but I'm worried firstly about the ££ (though we can stretch to it at a push), but I'm also worried the school won't accept it if it is done privately.
Any thoughts, advice, experience about this would be gratefully received.

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BluerThanRobinsEggs · 09/03/2022 12:00

We've got one of each and school haven't treated them any differently. Dc was immediately discharged from the NHS once diagnosed so it wasn't like a whole range of therapy was opened up to us.

chocolateandbananas · 09/03/2022 12:17

@BluerThanRobinsEggs out of interest why did you go ahead with both NHS and private? And any advice on how to pick a good private assessment practice - I'm getting rather bamboozled by it! Depressing that even with a diagnosis there isn't really any more help Sad

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BluerThanRobinsEggs · 09/03/2022 13:34

Different children. The waiting list for private was 6-8 weeks and we'd waited for over a year for NHS and still had no idea of when/if it might happen.

Imitatingdory · 09/03/2022 14:15

Schools and LAs who have blanket policy of not accepting private assessments are acting unlawfully.

The validity of a private assessment is less likely to be questioned if you use someone who also works in the NHS.

Depending on your income and DD’s age look at Caudwell Children’s charity. Depending on what funding they have at the time they offer free or vastly reduced assessments.

chocolateandbananas · 13/03/2022 19:27

Thanks for the comments. I haven't heard of the Caudwell charity - I will take a look.

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daffodilsbluebells · 15/03/2022 11:54

We have an nhs diagnosis for one dc but decided not to spend the money for private dx on the other dc after asd dx was recommended because many of the recommendations are for further therapy that also costs additional money (social coaching, conversation classes etc etc).

That said, 2-3 years later that dc is still on the camhs waiting list.

Added to that, our nhs asd report is in itself fairly useless and low on content but I'm glad that it's easily accessible on medical records. I wonder if private reports are more comprehensive? I suspect so.

I read today that 1m kids are waiting for mental health help...

MyDcAreMarvel · 15/03/2022 12:08

@chocolateandbananas if your dd needs more care than the “average” child due to her suspected ASD you can claim dla pre diagnosis and use that money to pay for an assessment. I recommend AXIA the nhs use them. If you can’t get to Chester they offer virtual appointments.

CoffeeWithCheese · 15/03/2022 12:44

We went privately - DD masks well at school and her ASD rigidity is fixed more on making sure she follows all the school rules (and getting quite anxious and meltdowny at home) so to the school = dream pupil. No one was really going to take her seriously for another good few years if we waited it out so we went private.

No issues with school accepting the report. GP surgery wanted to make an appointment to discuss it when they got a copy so I was kind of ready to take it on as a fight, but it was just to see if there was anything else they could do to support, and comments about how impressively thorough it was.

chocolateandbananas · 15/03/2022 14:39

Thanks for you comments. I've started looking a private providers and it is a bit overwhelming (to me anyway). Is there anything I should be looking for particularly to make sure I go for someone good/recognised?

@daffodilsbluebells that is really awful how long the CAMHs waiting list is. We are also on the waiting list and have been given an estimate of June/July to be seen. I just hope it isn't longer than that.

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daffodilsbluebells · 15/03/2022 14:56

Is that the initial appt? We had a triage appt ages ago to be admitted/screened for the asd assessment wait list, and I'm sure that counted as being 'seen' but then many many more months have ticked by waiting for the assessment appt.

MyDcAreMarvel · 15/03/2022 16:08

Is there anything I should be looking for particularly to make sure I go for someone good/recognised? not sure if you read my post but somewhere like AXIA which is used by a leading children hospital to keep their waiting list down.

chocolateandbananas · 16/03/2022 09:11

@daffodilsbluebells the appointment we have is at the social communications centre. I assumed this was an appointment that would be able to offer a diagnosis - but now I am a bit worried it is yet another hoop to jump through. That would change things if I have to wait that long to get to a triage appointment.

@MyDcAreMarvel thanks for the suggestion - I will take a look.

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daffodilsbluebells · 16/03/2022 09:20

The letters are never clear - might be worth calling the appt line and asking, if it's a diagnosis appt in June/July that's pretty good!

chocolateandbananas · 16/03/2022 09:27

@daffodilsbluebells I will definitely call them to try and find out. If I have that appointment just to be put on another waiting list for ages I will much more seriously consider private. I'm sorry to hear that you have had to wait so long - it is awful for children and their parents to have waits like this to get help.

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