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Diagnosis postponed AGAIN!

MrsSparrow

Hi everyone,

 

I was hoping i could find some wisdom and patience with the current DX process for my DD aged 9.....

 

My DS was seen as presented "abnormally" (not my words) from aged 3. After many tests he was DX as high functioning autism from the age of 4. he went to mainstream school up to the age of 7 and is now in a special unit of a mainstream school  15 miles away from home.

My DD currently aged 9 has been acting strangely (if you can call it that) from the age of 4, flapping, humming and being far below her peers from the start of school.

 

For 4 years now despite her behaviour and obvious motor skill imparment we have been told that she was "copying" her brother.....even though her tics and quirks are so different from my DS's.

 

Last June the behavioural psycologist referrered her finally for an assessment....14 months after the referal at our 2nd reappointment tomorrow we get a phone call that the psycharistrist is off sick AGAIN.....we have been preparing her for this for several weeks from the end of January.....she is distraught as the word aspergers was banded about at her initial referal last JUNE.  She just wants to know what is wrong with her.

 

I understand that people get ill..but this is the 3rd put off since the end of January....is it ok to get a bit annoyed now?  why is it i feel like they are fobbing my DD off?

 

Any experience/advice whould be greatly apprectiated

 

Franks Mum

  • Hi all,

    Great news! Today we had the 2d meeting with the Dr regarding my DD.  She confirmed that she will be getting a Dx of ASD with possible Dyspraxia.  I have a feeling of relief tinged with guilt that I didnt push hard enough before....mums guilt i guess!

    I'm so proud of my DD coping without any help until now and I am ecstatic she will finally get the help she needs.

    I will however be pursuing my complaint as I would hate anyone else to go through what we all did over the last 17 months.  Now onwards and upwards for the statement and DLA.

    Thank you all

    Franks Mum

  • Hi Frank's Mum

    Hooray for complaining!!  Hope it all goes well for you

    Zoe

  • Thank you for your advice.

     

    I ended up ringing the complaints departmet of the PCT and explaining the distress my DD had been put through (after a week of waiting for a new appointment and nothing forthcoming from CAMHS).

     

    My DD was seen on Wednesday and her dx is now a matter of "urgency" (the psychairatrists word not mine) and we should have a DX within a month.

    Fingers crossed for the right outcome!

    Franks Mum

  • Hi Mrs Sparrow

    Most definitely it's ok to be annoyed - it's not fair that you and your family have had to wait so long to access an appointment.  I would be inclined to write to the Chief Exec of the PCT or Children's Trust (the top big cheese in whatever organisation is accountable for the Psychologist) giving details of all the appointment dates, what has happened, the length of the delay plus the anxiety this delay is causing your family and request that a diagnostic appointment is made available at the earliest opportunity.

    If you wanted, you could even go so far as to make it a stage 1 complaint against the PCT/Children's Trust (that should certainly set wheels in motion).

    You may want to point out the recommendation in the National Autism Plan for Children that the whole diagnostic process should be completed within 30 weeks of the initial referral. 

    Any more fobbing off and I would enlist the guidance of NAS - their helpline can be contacted on 0845 070 4004

    Good luck

    Zoe