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Had enough! Waiting lists, SA, NHS & Private dx

(4 Posts)
osospecial Thu 30-Jan-14 16:02:35

Apologies in advance for length but really need to rant please!
Rang just now to see if there was a date for dd ASD assesment (according to paediatrician she was bringing it fwd to January, then we were told it would be delayed due to sickness) apparently the next panel is in March and DDs name is not even on that one!!
I'm so angry, we were first referred to paed when dd was 2, she is now 4.5.
Last summer I got fed up of waiting and saw a private paed who said it was ASD, I told NHS paed and after previously sitting on the fence who clearly backtracked and agreed and said 'oh yes I can see now language hasn't come on its more than that and likely asd etc etc....' and she would bring NHS ASD assessment forwards!
I wasnt too upset about the delay as i had the private report and the education department were happy with that report for dd SA.
However I sent a copy of private report to the NhS paed as it clearly summarised every other report I had on dd (and she hadn't read any of them). Now on her last report after our routine appointment in Dec she has written basically that my private report is not a clear dx! I'm so angry and not sure what to do. The private paed clearly told me in the appointment 'yes it's ASD' but doesn't say that in report in black and white IYSWIM it does say dd 'clearly scored within the very significant range' it recommends access to ASD parent programmes, ASD specialist placement etc.
Along with chasing the NHS for medical report for SA and ed dept for proposed statement this week I've had enough!
I've had enough of their damn waiting lists and crappy service, had enough of the useless paediatrician who has been no help whatsoever in the last 2.5 years, she has no idea about my dd. I thought the dx process would involve observation at home and in school, some tests involved, not a 'panel' of people just discussing a child they've either never met or have met briefly in the same room a handful of times!
Sorry this has turned into an essay!
I suppose what I'm asking is, should i ask private paed to rewrite report clearer? do i even need the nhs dx aswell? Will it make any diffence if i complain about this crap service? and on a seperate note can lea go over time limit for proposed statement because of delay getting medical report? (Not the dx but the SA medical we had to attend)
The whole system is a joke and I know that's nothing new as I read everyone else's stories on here but it's just so unfair and maddening!

bochead Thu 30-Jan-14 19:07:56

NICE guidelines say assessments should be done in 6 months. DS's took 5 years due to cahms interference.

No advice but lots of sympathy! If I had my time I again I'd just get on with and look to the private health care sector. Include the private report in the statement application. Don't be scared to complain to PALS, teh consultant's boss etc. remember office politics isn't your job. Get the LA to chase for NHS medical reports if they need em.

magso Thu 30-Jan-14 19:53:11

Oh it is infuriating. Don't they know childrens lives are being disrupted! I think if a professionals reply is delayed yes the LEA can delay to wait for it. However I am uncertain if the parent can ask for a delay to accommodate additional clarification or new reports . In our case ds got an assessment date (almost 5 years after initial referral) just as the SA was about to be finalised and ds transferred to a SS with ASD expertise. Indeed the ss concerned wanted to turm him down as too autistic - and he did not at that stage have a Dx of ASD. They suggested issuing the statement so ds could get into the SS and adding the report once available. As it happened he was diagnosed with (LF) autism on the spot without any further assessment process (very unusual) . We added the report afterwards, but it still causes confusion now he is at senior SS which is not ASD specific. We have since added various other NHS reports (SPD, APD) and they are completely ignored by staff!
You have my sympathy too, but I think complaining rationally is the way to go. Nothing seems to happen without it!! Sadly.

osospecial Thu 30-Jan-14 20:11:24

Anything that has been of any use to dd or us has come from the private sector, even the OT on nhs has discharged dd after 1 appointment and 1 school visit as she is not severe 'enough' although her report was full of the sensory processing difficulties dd has, and how its affecting her in school, you're just left to sort it out yourselves.
Tried getting la to chase for reports, they just say we are waiting on this and that and last time I left it to them they said they waiting on school and school said they hadn't received the request! I'm getting so impatient now.
Might try looking up PALS and complaining to them as I really have had enough now, thanks bochead and magso

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