how much control do we have over what is put in reports

[claw3]

Recently had an OT report, which is based on 'school report no difficulties in this area' which thereby means ds has no difficulties.

Despite me providing OT with evidence proving the total opposite from myself, ds, other experts and even the school themselves, OT is stating she has to put what the school tell her!

For example SENCO reports concerns regarding ds packed lunch which the school feel is very minimal.

DS has an extremely limited diet and is anaemic (he has taken medication for this for 4 ½ years) However because the food that he will eat is very high in carbs, fat and sugar he managed to maintain staying on the 91st centile from birth until starting school. DS started school in January 2009 his weight has dropped from 91st centile (3/4/09) to 75th (25/6/09) to in between 50th-75th (25/9/09) and a referral to a feeding clinic has been made.

DS had to have 5 teeth removed under GA in hospital September 2009, due to poor diet and limited brushing. He has also ground his teeth to the extent of nerves being exposed.

All he has ever eaten in school is a mouthful of chocolate spread sandwich.

Can they put that in a report?

OT is stating 'this is pleasing progress' in her report.

It's never-ending, isn't it?

I would contact school and try to get them to contact OT. I think.

Cory, thats the problem school do think that concerns regarding ds packed lunch are very minimal. I was hoping that OT would point out to them, given the evidence i have supplied them with, that this isnt the case, not agree with them!

Oh I'm really sorry you're going through this, claw. It's hopeless, isn't it, when they won't see what's staring them in the face.

You can demand that a report that contains false information is changed as under DP any information held must be accurate.

However... you cannot ask that school's comments are changed as everyone is entitled to their 'opinion' and opinions are not matters of fact, therefore the OT is only recording school's opinion.

However.. you are emtitled to point out to the OT that her report should be far and balanced and she should not rely in the opinions of others but she should form her own professional opinion based on all the evidence - both your views and schools.

So challenge it and ask for the report to be rewritten - I've done this and they do change them.

Wetaugust, this is the 3rd time the report has been re-written on my request.

I keep pointing out facts (ie written facts) and OT just keeps backing whatever school are saying ie agreeing with them.

For example OT reports that school state 'ds can change independently for PE' hence he has overcome his difficulties.

Yet in IEP (February)they list a concern as ds struggling to change for PE, taking a long time, getting flustered and needing help.

So report is basically mum says, school says, we agree with school!

They are agreeing with school, because we have moved Boroughs and they want ds off of their books. If he has outstanding needs, he will just be referred straight back to them. So they are trying to gloss it over. Bastards!

School report 'lunchtime concerns are minimal'

I tell OT ds has not been able to eat since starting school and his weight has dropped and referral to feeding clinic etc(its written in reports. His limited diet and food phobia was why he was referred to OT in 2007 FFS!

and this is not mentioned just 'lunchtime concerns are minimal' and ds is making pleasing progress!

Which part of he cant eat at lunchtime and has lost weight and needs to visit a feeding clinic because of it, is pleasing progress!

I give up!

So...

Photocopy the school report about chnaging for PE and photocopy the referral letter to the feeding clinic and send both to the OT asking her to rewrite her report to make mention of these.

That's a resonable request.

It shouldn't be refuused.

Better still write to OT's boss.

You want a balanced report that states "school have not identified any eating concerns however Child X has been referred to the feeding clinic"

I know it's a pian in the ass but it has to be done to keep the information held on your son accurate.

Its the OT's boss who i have been dealing with and ive given copies of everything and even highlighted relevant bits in yellow highlighting pen.

They cannot write an accurate report based on their opinions, as ds was assessed in 2008. Then they did not have any more contact with him until March 2010. They are trying to fob me off.

I have requested that they re-assess him, but they are refusing, as we are not in the borough now. Not sure i would trust them to re-assess anyhow.

I think im going to try and find a private sensory trained OT to do a full assessment.

Hi Claw

a report that was written in 2008 is not worth bothering about - things have moved on.

I am very curious as to why you and many others on this board place so much importance on getting OT reports.

My 21 yr old has never seen an OT and he has plenty of sensory issues.

Perhaps I should be pushing for one too?

Best wishes

Thats exactly my point to OT Wetaugust, things have moved on (and he wasnt assessed properly in the first place anyhow) but they cannot discharge ds from their service until they write a report.

Interesting question Wetaugust. In my opinion ASD is the umbrella term for a whole host of different syndromes, disorders and dsyfunction, but we are fobbed off with your child has ASD, its ASD related, so be on your way.

For me, its about what i can do to help/improve things for my ds and breaking ASD down into smaller sections and identifying what these difficulties are i can actually do something to help/improve on.

Most of if not all of ds's difficulties seem to be sensory related.

As you know yourself, why a child acts that way should not be important, it should be about what are we going to do to help when he acts that way. A report helps to show that he needs help to learn to act in a different way. Mum's word is worth shit.

Also for me Wetaugust, its proof that ds's hasnt just been mollycoddled.

He doesnt shit himself because im a lazy-arse who couldnt be bothered to toilet train her son.

The only thing he can tolerate in his diet is sweet stuff, not because he is a spoilt brat and i 'allow' it.

He cant dress himself because clothes touching his skin 'burn', not because ive babied him.

When he says that others have hit him, when they have only brushed past him, he is not an attention seeking liar.

and i didnt just make all this up because i am not right in the head.

Getting an 'expert' to agree with what i already know, is important.

I see you point Claw, but all the behaviours you describe above could just as adequately be covered by a Clinical Psychologist's assessment. Many of them were specifically mentioned in my DS's CP report.

And having documented them I don't see what else an OT can do as the staregies are either so bleeding obvious they don't need to be spelt out or just statements of fact.

So you're basically in a Catch 22 - you can't be signed off until report is written however they will not write the report to your satisfaction so sign-off cannot take place.

Go to the top.

Write to the Chief Executive of the NHS trust and copy the letter to your local MP. That should get things moving.

Sometimes we can waste too much time talking to the monkeys when we really need to speak with the organ-grinder

Wetaugust, ds has been seeing a Clinical Psychologist at CAMHS and will be seeing another at feeding clinic tomorrow. CAMHS has been crap so far, she has no understanding of Autism, let alone sensory issues. She might surprise me at the end of the weekly sessions ds has. Perhaps something might come from this or the feeding clinic.

I have emailed the OT pointing out yet again what is wrong with the report and i have told her i want her to discharge ds without a report. OT has replied to tell me the boss is on holiday this week and she will reply once she returns.

I wont have this shit report circulated about ds, will bear the organ grinders in mind, if she refuses to discharge without a report.

Thanks

Claw

CAMHS - ask the CP there for a written assessment. My DS was seem by a CAMHS for 6 months without me receiving anything in writing until I asked for a written assessment to support his application for a residential placement. It was surprisingly detailed about his sensory issues - i say surprisingly because I wasn't too impressed before that with her knowledge of the specifics of ASD.

If you don't have confidence in that particular CAMHS ask to be referred to another or ask the feeding clinic CP for written assessment. I woud have thought their written views would carry more weight than a general OTs?

I must admit i was reluctant to ask for a written report - but sometimes the talking has to stop and it's time to commit their opinion to paper.

Best wishes

Wetaugust, i havent had any feedback from CAMHS yet. I have to wait until ds's weekly sessions and 'care plan' have finished 10 weeks, so will not get anything in writing until May.

Ds goes off for an hour for 'worries in his head' and i wait in reception. They are supposed to be helping with sleep, feeding and 'worries'. Her advice to me about sleeping, was a photocopied sheet from a book, wasnt impressed! They might be more successful with ds and surprise me, i wont write them off totally just yet.

Had feeding clinic appointment today and i was very impressed. Appointment was with a CP, a SALT and 2 sensory trained OTs (they work as a team).

They stated it was obvious that most of ds's difficulties were sensory related and that he needed to be fully assessed by OT ASAP (she is coming here on Tuesday) and then going into school immediately after Easter with SALT too. (and writing a full assessment report)

They sound like they are going to kick some arse (not getting my hopes up, ive heard that before!) but im feeling hopeful