Upset

[Emptywishingwell]

Sorry I don't even care if no one replies I just need to vent as I'm so upset and alone right now.

Ive just had a report sent to me and a large part of it is inaccurate or false and is one sided so doesn't explain fully. I'm devastated as in one appointment I was clearly told one thing and now it's all been retracted. I've now been made to look bad and now my dd will never be assessed which we have waited for in the last few years. It will also cause more tension at school.

So to sum it up we will now not get the help I've been fighting for and I just have to deal with it all. It all must be me.

[Emptywishingwell]

Sorry I know it was a vague post I'm very upset at the min and it's a long story.
It was from CAMHs. A lot of the information is saying I've said stuff I haven't and are massively untrue such as my daughter being non-verbal at school. Or is highlights part of an issue but not the full story behind it. For example it states I'm giving various reasons why my ds can't attend support sessions (when actually the support provider asked me to wait as they were in the middle of changing the support they provide so when they change we can attend hence waiting for the chance to attend which was explained) It also states part of my medical history and the report is also sent to school and I don't want them knowing my medical history as it isn't relevant for them)
It also means that she is now discharged from them and also that due to the inaccurate content the paediatrician is unlikely to pursue assessment.
Bare with me I will post back story (sorry it wasn't my intention to drip feed)

[Emptywishingwell]

My dd has a private dx of SPD and is undergoing an assessment for ASD. All behaviours present from early age and there are many over all areas.
Her previous school expressed concerns and I have letters stating many issues at school and they encouraged me to seek help. She has recently changed school and has started to make progress due to different learning environment and meeting her sensory needs slightly more. She is happier and shows less behaviours at school now. School say she has no issues at all. She does come home in overload or meltdown if she's had a bad day but overall I believe she is happy and coping better but masks anxiety in school (she has a history of being non verbal with strangers or certain people including family members and being unable to express emotions in addition to extreme paranoia about others watching her etc so only shows her true self at home) and explodes at home.

She's been under a paediatrician for 2 years who decided to look into the possibility of ASD and she failed to comply for the ADOS test as she was shutdown from anxiety so they passed to CAMHS.

CAMHS observed her and read previous paediatrician reports and said she had significant social communication difficulties. I was shown where my dd was on spectrum and which group and was spoken to like she had ASD etc They then observed her in school and this led to current report.

The report says that now she doesn't have social communication difficulties and that she is only like it with me and fine at school. As well as all the inaccuracies etc. The report is based on the observations in clinic (which demonstrated behaviours leading to social communication difficulties) reading Peadiatric and current school reports, and an observation in school. So a small snapshot. It is only based on her anxiety and not her wider issues such as sensory issues etc with is what causes the anxiety.

She doesn't do a lot a normal child would her age as she doesn't cope and I do think ASD would be worth investigating. But now CAMHs who previous stated parts of ASD only think she's selective.

I'm so frustrated and upset they don't have to deal with it all and they don't get the brunt of it or that we can't just go out for the day or that she can't do simple things such as have a play date or a birthday party. Everything has to be a certain way and she doesn't play with toys in the traditional sense as well as everything else.

[Emptywishingwell]

Thank you I've rang to speak to the lady who wrote it and to find out the complaint procedure. I've highlife do and will send it to all parties with a note to correct.

It is so unhelpful in regards to school as they don't see her true self and she's been ok there so far so there's tension as they don't get how severe she's been so far and now it confirms that I'm 'wrong'.

[Emptywishingwell]

Thank you I will do. I think it will be to late as school will already have seen it but worth doing all the same.

[Youarenotkiddingme]

I agree with writing with highlighted inaccuracies. Ask for them to be amended. Also mention that as its for school your health and past medical history are unimportant so should be removed.

[Ineedmorepatience]

When the person writes a new report she/he can state that the old report contained inaccuracies and that it should be destroyed and not kept on file but I think you would need to request that.

I would follow up your phone call with a letter, request exactly what you want removed and ask for something to be put in about destroying the original!

We had something similar happen due to school saying there were no issues, I managed to stop them from discharging Dd3 and she got her assessment!

Good luck

[booitsme]

Try and make your reply as calm and unemotional as possible. Copy and paste what they have said and then correct underneath each one I.e mum says daughter non verbal at school.
'daughter is and has always been verbal at school'. It will be taken more seriously than you saying 'I have never said to X that daughter is non verbal... Make it sharp and to the point. I know it may be obvious but as a family solicitor many of my clients find it hard to just state facts when they are angry and hurt, but that will usually serve them best.

[knittingwithnettles]

Usually there is a draft before they issue the final report? Did they not give you the draft version to amend? Certainly ds2's CAMHS report was sent to me in draft before the final version was shared with school, Dr etc.

When Ds2 was first seen at CAMHS he did not meet the criteria for ASD using the ADOS. However, they kept him on file, and said if there were further developments this could change. It only took one letter and one short meeting to further update a year later (when behaviour deterioated) and he did THEN meet the criteria, and received a diagnosis of ASD aged 8. However, the initial report was accurate, I just tell you this to show that diagnoses can take a long time to make their appearance, especially when a child is presenting in a complex way. Ds2 for example had some friends in school and looked adults in the eye, this was enough to put him under the ADOS.

[AugustaFinkNottle]

Email them urgently saying they do NOT have permission to share your personal medical details with the school or anyone else and that you regard this as a serious and major breach of confidentiality.