Argh! Dd's paed appointment for ASD assessment was cancelled in error. Is private route frighteningly expensive? What to do?

[MasqueradeWaltzer]

So, after an 11 week wait from GP referral to paediatrician appointment, we rock up to the hospital today to be told that the appointment was cancelled a month ago.

I've worked out it's a mix up with some other appointments dd1 had about eating issues, the hospital's error, not ours.

I've been advised that my best bet, other than waiting until November for a new appointment, is to hijack the appointment about the eating issues (next week) and try to get the consultant to fast-track a new ASD appointment.

But if she can't do this, I'm sure as hell not waiting another 11 weeks. So does anybody have any experience of referring privately, maybe through the NAS? Any advice would be gratefully received - dd is about to start Y6 and I'm anxious to have this diagnosed (or not) before she starts secondary school next September.

Wow, really, Polter? I thought that was from referral to diagnosis, rather than referral to first appointment? I'm expecting the whole process to take a year or so.

We had to wait 10 months for our appointment. Maybe ask for a cancellation appointment if one becomes available

I was going to say that November doesn't seem long time away really, I know you are keen to get the ball rolling but I would wait for the NHS appointment. I would also phone regularly to see if they've got any cancellations.

OK, seems like the waiting time depends on postcode lottery. I really wish I'd started the process earlier now, but certain red herrings stopped me from considering ASD as the root of her difficulties.

Seems unlikely anything will be in place by next September then. Her primary school will tell them about the ongoing work they've done with her re. social and emotional issues - I guess that will have to do in the interim.

Thanks for sharing your experiences . I'll see how we get on on Tuesday.

And I will definitely stress that we are up for taking any last minute cancellations too - thanks for that suggestion. Better than spending wads of cash we don't have on a private referral!

Private referrals can be a complete waste of money as well depending on where you live. In some area's LA's don't recognise a private diagnosis.

Thanks, fairgame, I didn't know that either.

I've calmed down a bit now, and these answers have given me some perspective (and a face in some cases, for your long waits). It's just difficult when you're mentally prepared for something and then it doesn't happen... We'll get there eventually though.

Our waiting time for ds was originally 2 years, but has been reduced to next year, so probably 18 months.

We are also on a private waiting list due to see someone in a month, we know our LA won't recognise it, but it may give us more of a leg to stand on in the meantime with school.

our initial appointment was about 8 week wait, then we were allowed to be referred to the consultant paediatrician and that was a 27 week wait but they did bring it forward by 6 weeks at short notice. then they saw her for about 5 minutes but spent a VERY long time talking to me. then they refer for multidisciplinary, follow up appointment booked for a year later. So enormously long dragged out process. and the best part of ours is I don't believe (and nor does anyone else) that she has ASD, I think she is dyspraxic but they aren't looking into that...

I'd be tempted to complain to the hospital PALS service. It's not your error it's theirs.

I would be complaining lots too.

I am sorry this has happened to you.

There is no way you should be in for another 11 week wait period, especially since the error was not yours.

It is true that some LAs trynot to recognise private dx, but you need to examine what you want from your dx. LAs get involved at statement level - if what you want/your dd needs is recognition from school, and school are likely to be proactive in their reasonable adjustments, then you don't necessarily need the LA to acknowldge the dx, iyswim?

As to the question of wait times - with dd1 I had interminable waiting lists. followed by a lengthy dragged out dxing process. In all, she was in the system for 2 years before being dx'd (at the age of 2.8) with severe ASD.

With dd2, I opted for the private route, as the dx process on the NHS would have been incredibly lengthy, as is quite a subtle and complex case. Done and dusted in about 10 weeks from first enquiry. She was dx'd earlier this year, at age 7, with AS.

With ds, I have had much shorter waiting list times - nearer the 11 weeks you had - and the system seems to be working well and on time (ish - his latest paed appt is about 7 weeks late). However I expect to be on the rollercoaster for much longer this time around, as he is not presenting as severe atm. He is 2, and has already been in the system for 9 months or so.

As to private costs (in case you want to look into it) - we saw Margo Sharp, who is excellent, and experienced with dxing girls. It cost us abut £1600 for her (whole day) visit and report.

If i were you, and worried about having a dx in time for secondary transition, I'd be tempted to get a private dx while staying on the NHS lists and waiting for that to follow (so that you have the 'acceptable' dx if it comes to that), if at all possible.

Can you call the paed's secretary and ask for a short notice/cancellation appointment. You shouldn't have to go to the back of the queue over someone else's mistake and may not even get a private appointment much before November now anyway.

True that a private appt may not be available before November, but usually a private dx then comes about a whole lot quicker than an NHS one - time betwen initial appt and dx for dd1 was nearly 2 years. And ds as already been in the system for 9 motnhs, with no end in sight. dd2 was 10 weeks from initial contact to dx.

my daughter saw margo as well - she has just gone into year 6 - I enquired in june, she saw her in july finalised report in august. she is also due to see daphne keen in a few weeks time so that has been a slightly longer wait

We are on the waiting list with Veronica Bliss in Lancashire, just wondering if anyone has heard of her?

Does anyone have any recommendations for a private assessment in North Yorkshire?

Margo Sharp is about a 3 hour drive away, would it be worth travelling to see someone who is well respected and heard of?
(Sorry for hijack!)

margo would come to you - that's what she did with us - she spent nearly a whole day in school then came to our home after school - she was amazing and although it was a lot of money it was worth every single penny and the report is fantastic although the LA so far are ignoring it but im sure they will see sense soon

Would she tailor it to ds? Spending a day at school with him would probably be pointless, as he masks whatever is going on incredibly well!

I might try and ring her next week.
Thank you bjk :)

Fav, dd2 masks things so well that school were flabbergasted that I even raised concerns to begin with, and completely floored when dd2 was actually dx'd. All they see is a polite, eager to learn, happy little girl who throws herself into just about anything with infectious enthusiasm.

Dd2 is actually quite severely affected, but has enough coping strategies to get by for now (she's only 7, and gets a lot of support from us at home). Margo saw right through the lot, and her report is in depth and accurate. If school took note of even half of it, dd2 would be well served. Sadly her teacher last year was too entrenched in the 'couldn't possibly have ASD, I haven't noticed anything' position to remove her blinkers. Hopefully next years teacher will take note.

Ds's teacher last year was dreadful, he gets into trouble for getting giddy (sign of stress), being rude (stress) and not doing work.
Despite asking repeatedly for him to not miss breaks for any reason (as he comes home so upset he struggles to communicate and wishes himself dead), she doesn't believe there is an issue, he is a naughty boy, Dh and I are weak parents. Thank god he has another teacher this time!

Hope your dd's next teacher is better for her.

Will definitely ring Margo next week.

fav, I second what panda says - I didn't send her in to look at asd - it was speech only so I was shocked when she confirmed it was asd - both her brothers are asd but as shes a girl she presents so differently. I thought at school she was 'normal' but margo picks up on so much you will be amazed so her going into school is a good thing

Ds has had 4 different people observe him at school (ed psych, a behavioural support lady, enhanced mainstream services and a parent support advisor) and none of them spot anything.

Sorry, Internet went funny then and I didn't finish the post.

Do you think she'd spot things that no-one else has?

He had a basic speech and language assessment by enhanced mainstream services and his scores were within the normal range.

I've also used Margo for a speech and language assessment for DD 15 for tribunal. DD was already diagnosed ASD although CAMHS psychiatrist was unsure.

Margo sees everything! She did say to me that she could understand why people could miss DD's ASD in an hour long appointment as she is so good at masking. The stuff she identified previous NHS SALT had completely missed.

I'm in South Yorks and considering getting her back for DS7 who no one can decide what's going on including me!