DH has written a strong letter to the paed

[JenRose]

Re:XXXXXXXXXXXX

 

Dear Dr xxxxxx

 

I am writing to express my concern and dismay at the treatment that we have recently received during an appointment to your Child Development Centre.

 

On Tuesday 20th November myself,my wife Jen and R attended your clinic and were seen by Dr B

 

He advised us that we were being discharged and transferred to XXXXXXX

This was news to us as at the review meeting in June we were told that R can still attend your clinic as an outpatient, please see notes of that meeting on 20 June 2007.

 

We asked Dr B what was happening re your concerns of a year ago when your findings stated that after a multi discliplinary asessment your diagnosis was:

 

R presents with lack of pretend play skills,echolalic and delayed language skills and minimal social reciprocity. This could suggest a diagnosis of ASD,however further asessment and observation and time will be needed to clarify the diagnosis.

 

Dr B did not know that R had been asessed under your guidance a year ago and was surprised.

He asked us how R is now and we informed him that:

 

Her language is progressing well although there is still minimal social reciprocity and echolalia.

 

That she does not seek to play with other children and is happy in her own little world.

 

That she gets extremely distressed at noises, routine change and lines up her toys all over our house.

 

That it is becoming a struggle to get her into nursery, she gets distressed when any changes occour such as a new member of staff or her preferred teacher is absent.

 

Dr B said it was clear to him that your findings and our description of R,s difficulties meant that R was on the Autistic Spectrum and that he would be writing to both our GP and us to confirm this.

 

We also handed him the ICAN report for R file which states that Indias language is really well but that she plays "alongside her friends and sometimes on her own".

 

Imagine our surprise when 2 days later on Thursday jen received a telephone call from Dr B to say he is retracting his diagnosis as he hadnt read R,s file properly and that the report from the Educational Psychologist contradicts what we as his parents have told him.

 

Jen asked had he read the report from Mr H, specialist Consulting Psychologist in Developmental Disorders that backed up not only your findings but ours as well and he said "i havent got that far yet".

 

Mr H,s report concludes the following:

 

 

"When the play is unstructered R clearly is at a loss as to what to do and spends a lot of time merely observing not knowing how to interact with others. Occasionally a child will direct her and she may or may not respond but as soon as shes not being directed (by adult or child she wanders off aimlessly)

There is strong evidence of language delay coupled with social interaction difficulties and some inflexibility of interest and activity. These are highly indicative of a Social and Communication Disordersuch as ASD.

 

Dr B told Jen that for a child to have a diagnosis of an ASD it MUST be present in a school setting,

Jen disagreed as it is well documented that lots of children with an ASD appear to function well at school but the act of "keeping it all in" results in severe behavioural problems just like R displays when she is at home.

 

Also our son Michael was diagnosed by Dr F as having a Pervasive Developmental Disorder when he in fact was absent from school for 2 years during the asessment and diagnosis time,

 

Dr B disagreed.

 

We would like you to clarify the following:

 

Is Dr B now telling us that your findings of an ASD present in R a year ago is incorrect as there were no school reports done at the time?

 

Is the Child Developmental Centre of the opinion that we as R parents are "fabricating her symptoms" because they dont match the opinion of an Educational Psychologist?

 

Is there a miracle cure that Dr B knows that can cure a child of ASD in 2 days?

 

I cannot begin to describe the distress and emotion that Dr B has put my family through in the last week, his uncaring attitude during the phone call to my wife, his complete lack of professionalism, i am absolutely appalled at our treatment and am considering taking action against B PCT for misdiagnosis and mistreatment at his hands.

 

Yesterday i contacted the National Autistic Society and told them of our predicament, they told us that they had not heard of a paediatrician diagnosing the presence of an ASD and retracting it 2 days later, they assured me that your clinic is on their database as being a specialist centre for children with social and communication difficulties and advised me to write to yourself to ask you to clarify your departments diagnosis of our daughter.

 

I await your reply within 7 days where i hope this situation can be resolved, failing that i will be taking further action against B PCT.

 

 

yours sincerely

 

 

 

xxxxxx xxxxxxxx

Edited November 26, 2007 by baddad

[pearl]

 

Hope this gets you somewhere.

[soraya]

What a good letter, well done for standing up for yourselves.

[pingu]

What a situation, and unfortunatly you are not alone. Its a case of having too many cooks really isnt it. Kids see so many professionals in the line of diagnosis, and unfortunatly the kids dont 'act' the same at each visit so the professionals end up with different findings.

 

I hope the clinic in question replies within the seven days you have given them. Please keep us updated on the outcome.

 

Take care

shaz

[Clare63]

Jen, brilliant letter.

<'> <'> <'>

Clare x x x

[JenRose]

this is being sent recorded del tomorrow and i have removed the threats of legal action to say "if this unfortunate situation is not resolved then we shall be considering other options that we can take" on the advise of our private psych.

 

so we shall wait and see what happens.

 

then we are requesting copies of all R,s medical records and if there is anything untoward in it from the ed psych we shall be writing to her boss to ask

her to explain her actions because something isnt right, the paed was happy to dx until he spoke to the ed psych.

[stressedmumto2]

Well done to you and hubby, the letter is fantastic and I think you are definatly doing the right thing challenging this. We have had similar in my borough where things have been said and then re-tracted and the only thing you can do is challenge it.

 

Good luck I hope you get the answers you want <'>

[stressedmumto2]

I would also suggest perhaps copying in the ed physc and anybody else you think should be involved in this. <'>

[Cat]

Excellent letter and good advice from you phsyc. Fingers and toes crossed for you now <'>

 

Cat

[Suze]

Gosh how awful and stressful for you all, really hope this can be resolved quickly, good letter, best wishes suzex

[Nic m]

Good luck,

i hope you get a good response

Nic

[pumpkinpie]

Brilliant letter! onkly thing I would say is that she does show signs in the nursery setting - didnt you write a while ago about staff having to take her around with them because she was disturbed by changes of routine etc and they expressed concern! Hasnt he (paed spoken to them)?