In yesterday’s post I mentioned a letter that had really upset and annoyed me, but I didn’t want that to be the focus of the post, which it may well have been considering how annoyed I was by it.
A little bit of background for non regular readers and a summary of events to refresh the minds of the (long suffering) regulars (thank you for sticking with us)!
-referral to CDC
-doc doesn’t know what PDA is, says gave eye contact and a grape therefore not autistic.
-Contacted PALS- through to clinical director of Paediatrics, who arranges another paediatrician while this one updates his knowledge.
-appointment with new Doc, he says definitely social communication difficulties, I left him with a questionnaire (which can be found at http://www.thepdaresource.com/files/PDA_Questionnaire.pdf ), and a pile of questionnaires filled out by everyone that had contact with her (found at http://www.pdasociety.org.uk/resources/extreme-demand-avoidance-questionnaire ), plus any other relevant information from her little red book, school contact book and other reports (SALT, swimming ect).
-Phone call from doc to say Dinky DEFINITELY has PDA, referred to CAMHS.
-went to go pick up the doc’s report only to find he had given a provisional diagnosis of PDA.
-CAMHS turned down referral. Doc says he will try again. Copy of the letter from CAMHS says from the information they have been presented with Dinky would qualify for an autism assessment which falls under CDC remit.
-I was annoyed by the CDC Vs CAMHS hot potato battle. I contacted the clinical director of paediatrics to get dinky on the path for assessment for PDA- ASD. I was told this was going to be done, and via the CDC, waiting list is a year but they will move her up the list.
-I take dinky to see the Paed who says he has seen enough, and Dinky “has the clearest case of PDA he has ever seen.” But we have to wait until she has seen the specialist speech and language therapist and had the assessment before she would get a diagnosis. Waiting time from referral to second stage- a year.
-Ed psych agrees ‘PDA fits her like a glove’.
-Fed up, as Dinky now out of school because they don’t accept she has an autism spectrum condition, I contact PALS.
-Got a call from the Doc who, after I explained my position, understood why I wasn’t happy, but he said he really thought CAMHS would take Dinky on.
-Got a call from the lead consultant at CDC who said that dinky was on the list and seemed that her assessment would be in December 2014/January 2015. I explained it was not on, as Dinky was originally referred in March, after months of trying to get into see CAMHS, and it wasn’t Dinky’s fault the first doc didn’t know what PDA was and that CAMHS keep turning her down, and no-one had the bright idea of referring her to stage 2 which could have been cancelled if CAMHS did decide to take her on! She said she would see what she could do.
So, we are all caught up, worst case scenario, dinky would have her assessment in December or January.
The letter I received yesterday was addressed to the social communication clinic in the CDC, dated 3rd March 2014- it says
I would be very grateful if you could possibly arrange to see Dinky at stage 2 in the social communication clinic.
Dinky presents with features suggestive of Pathological Demand Avoidance. CAMHS have refused to see her and her mother is deeply concerned about her difficult behaviour.
I was FUMING! This should have been done MONTHS ago!
So I emailed my contact at PALS last night.
This morning I phoned and left messages with the assistants of the head of the CDC and the Clinical director of paediatrics.
I got a call back relatively quickly from the clinical director who was apologetic that the referral to stage 2 seems not to have been made. She said she would contact the head of the CDC and strongly request that Dinky is moved up the stage 2 list in line with other children who were referred to stage 2 in July, when Dinky WOULD have been referred if the Paediatricians had done what they were supposed to have done.
Then I got a call from the supervisor of the contact at PALS who said she was going to make sure it was actually DONE this time. She is also going to log a complaint about how the systems work and how they work with each other.
(These new education health and social care plans are going to suck if the different services do not learn to work effectively with each other.)
Then- and I couldn’t believe it, I got a call from the head of the CDC
DINKY’S ASSESSMENT IS SET FOR 16th JUNE 2014
I couldn’t speak, I had no words!
We did eventually discuss how they would go about doing the speech and language part as she needs to see Dinky, and they normally do it at school. She asked if Dinky did any sort of clubs or outside activities, I mentioned that Dinky is due to start Rebound Therapy trampolining at the leisure centre in May so they may be able to see her there in a structured/ unstructured environment.
So even the past 2 days has been an absolute roller-coaster.
16th of June 2014, Dinky should get her diagnosis!
(Which is not exactly cause for celebration, but kind of is)