Mumsnet Talk

I've posted before under a different name about my ds2 who is now 3.5 and awaiting assessment for ASD (to do with 1:1 care in a preschool or lack thereof and moving him to school nursery) We saw a paediatrician in August who referred him to the ASD assessment team and said it could be up to 12 months which was fine as he's a Sept birthday so would be seen in Feb 2013ish and start school the following Sept, plenty of time to put support in place if needed.

He started school nursery in mid January and at school so far, so good - he's settled well and is enjoying it. The SENCO is just brilliant and has plenty of adult support in place for him and we are so glad we made the choice to move him even though his traits are becoming more and more obvious at home.

A week ago, I received a copy of a letter that had been sent from CAMHS to the paediatrician we saw saying that ds2 had been seen by a SaLT in school, she had reviewed his progress and based on her report, the team had decided that he no longer required an assessment and he was being removed from the waiting list. Fantastic, really, that he's made so much progress I thought. Except a few things.

1. I had no idea he'd been reviewed at school.
2. School had no idea he'd been reviewed at school.
3. SaLT named in the letter had no idea he'd been reviewed at school.

I've spoken to the SaLT and she is supposed to be chasing this up as she is adamant she hasn't seen ds2. SENCO is chasing it up as she and the Headteacher are furious that it is being implied that they have had someone in without parental consent. I've spoken to CAMHS who just tell me to speak to the hospital we were seen at. The SaLT has said she needs to speak to the Lead Paediatrician of the ASD team but she's split over 3 sites and on top of that has lost her notes from the last team meeting they had, where ds2 was discussed. She thinks that someone has heard the original SaLT report from a different SaLT, made a sweeping generalisation and decided he doesn't need assessment - the original report was fairly positive given that his vocabulary was good and he interacted well with her but mentioned his repetitiveness and strange speech patterns too.

They're now saying the waiting list is 18 months for assessment which means that if he's put back on the list now, he may not be seen until Aug 2013, possibly longer but I am still waiting for an answer from someone as to what happened and why it happened and I'm getting more and more cross as every day passes that this has happened.

Where do I go from here and who do I contact about this as I want to ensure it never happens again to anyone else?

bump

surely when they realise their cockup they should put him back in his place in the queue, bugger going to the back of the queue again. If it's not getting sorted consider putting a written complaint into PALS at the hospital, details are usually on the trust website. I've found that can get things moving in the right direction when I've needed it.

I sincerely hope he'd be back in his place in the queue but after this almighty cockup I have no faith in them to do anything properly. I could scream - I'm just getting nowhere. PALS is where I was thinking of heading but I don't want to contact them prematurely. All I want is someone, any of them, to contact me and say we're working it out and we'll let you know ASAP instead of the wall of silence I'm meeting. ARGH. I so don't need this!

Thanks for the bump btw anniebear!

PALS was my first thought,
Or perhaps a letter to the head of SaLT asking them to investigate what has happened and to respond to you within a certain time frame. In your letter you could state what outcomes you would like - such as making sure that they have all the correct notes on your son (ask for copies?); being copied in on all correspondence, making sure you are notified of their visits to school etc and probably most importantly that he is replaced on the waiting list in the position he was before they removed him.

I would ask my GP, because she is lovely and sorts out all sorts of dc related stuff for me.

or

Ask the CAMH person who wrote it who her line manager is. Contact line manager and ask for explanation and for it to be corrected.

grrrrrrrrrrrrrrrr feel exhausted just thinking about the phone-athon and possible runaround involved.

Thanks for your advice. The SaLT finally answered my calls this morning and apparently the letter was partially correct - the ASD team have decided that they won't be assessing him due to the paediatrician report and the original SaLT report. The letter was just apparently worded badly.

The SaLT is putting him on her own waiting list so she will come to home and school in the next 14 weeks and she can refer him back if its deemed appropriate.

I'm really annoyed that the opinion of a paediatrician who specialises in gastroenterology rather than development and who thinks that ds2 responding to all questions with his own name is appropriate seems to have more sway with these people than his parents who live with him 24/7.

Going to talk to the SENCO when I take him to school and see what she says.