This REALLY isn't on is it? Wtf are they thinking?

[WhatTheACTUALaarrgghh]

Found out there's a letter in my kids medical file. Basically saying they don't have what they have. The conditions are not non specific and Untestable. Think for example (but it's not these conditions as dont want to give identifying info Downs syndrome, haemophilia and asthma) stuff you can't make up basically.

Anyway I said to my Drs why have it accepted this? They said they accepted it in good faith? Again I said but you KNOW the kids DO have these conditions ?? It's proven so you've accepted a letter from someone who is just lying and you have the medical info and test results right there you should have written back saying that no the child does have x,y,z and that should be the end of it???

What On earth are they thinking? I'm furious and they won't give me a straight answer

You're sure it isn't a nurse from Atos? Doing the PIP or something? But they would usually do a home visit or you would go in. They can phone or write to GPs, though.

It wasn't in response to anything as far as I can tell she initiated it all after doing in to school

It was written very strangely. She did in fact point out in it on more than one occasion that I was attention seeking and seeking control over supposed disabilities
There's a whole paragraph about her alleging we had daily childcare and household management
Another alleging I was controlling and would not allow school to be trained by anyone other than me and that I was giving them wrong advice when I'm actual fact they had all their training at the hospital I wasn't even there

I don't know what prompted it or why she even went in to school as like I said I had seen the 'official' school nurse for out school shortly before then suddenly this woman was in the scene it's extremely odd

Sorry- no if it was in the GP file don;t think that would be right, they don;t send their reports to the GP (Atos). If you have had a recent assessment for PIP or DLA etc then you could do a SAR to the DWP and they will send you everything they have. The SAR form is online.

Op do you have legal cover on your house insurance - could they get involved and help you to write a formal letter?

Something doesn't add up for me here op:

Is this the whole story? Not being nasty at all I just don't understand why this nurse would be so involved with your dc.
Are external agencies involved?

My dd has medication prescribed via hospital consultant through our GP and there is no way on god's earth they would cancel her prescription for a known and diagnosed condition on the instruction of a school nurse who has never even met her.

Definitely more to this...

The only thing I wonder about is that I was told by the first school nurse and by my daughters previous hospital that 'no child in this borough has ever had or will ever have 1:1 for these conditions' they had a hugely different treatment and management plan to the new hospital too and they seemed pissed off we changed and pissed off we got 1:1 and generally something didn't seem right but how that fits in I don't know ? But I can't thinkno anything else that made us different to warrant this treatment ?

I remember being very upset when DS1 was having speech therapy and they wrote something about the parent not allowing the child to direct play, and took over or something. Made me sound responsible. They should take more care with what they say. Yours sounds worse though.

Have you spoken to the GP, what did they think?

The only thing I can think of to make sense of this madness is maybe the school actual got her in to investigate you. Maybe the old school nurse or maybe a teacher voiced concerns and they got her in to investigate? Especially as you say she seems to be focusing on you. Or maybe a parent voiced concerns. That's literally the only thing I can think of to explain why she was so interested in you

Exactly - which makes this all the lore outrageous! Why did the nurse do this??

Why and how. I imagine if she's put so much effort into discrediting a parent she's never met over the care of a child she's never met, she's not done it on a whim. This nurse fits into the wider service. It's very unlikely she's walked up to a random filing cabinet, pulled out a random child's notes and just gotten stuck in trying to pick out holes. She's been asked to do something by someone. Who that someone is and why they allowed this nurse to spend so much time and effort on the OP's family for seemingly no reason is the bigger question here.

When it was cancelled I called the gp o had to go through a daily scenario and what we gave our daughter etc as they had been told 'over medicating' they stopped it and wouldn't reinstate so i immediately hit the hospital to call them
The practice partner (one of the GPs) called me back and told me in future not to get the hospital to call him to speak to him directly ? But I had done and he wouldn't reinstate I told him I had no choice

It wasn't the school as they've written to support us. Currently no other agencies involved although we had a CAF years ago when first diagnosed but that was all wound up and had been helpful.

you are entitled to have the medical record changed if it is inaccurate or to have a note attached saying the letter is incorrect - if the keeper of the medical record does not do this they are in breach of the act and these days there are significant fines involved.
Caveat is the information being incorrect - subject access request will give you the file. if the letter is provably incorrect and there is nothing in the file to this effect then ask them to do so. if they do not agree remind them of their responsibilities as data controllers and talk to a solicitor.
nmc etc will take forever - never dealt with pals but I wouldn't have expected them to do more than liaise.

The school nurse service aren't really taking responsibility as they say she was an agency nurse and I have to go to PALS not them ?

Then go to PALS!

Seriously, it sounds as though you have tried everything else, and nobody is listening. PALS really is your only option.

@ShapelyBingoWing - agreed. This definitely doesn't make sense.

I'm sorry OP but I feel that you're either deliberately withholding an important part of the backstory or have some kind of chip on your shoulder. I don't see why this nurse would randomly pick on you, having never met you or your children, and then write a letter defaming you.

Are you sure that your doctor would even be allowed to write back stating what conditions your child actually does have?
That seems to be a really really easy way to fish for someone's private medical information, if so - just guess what you think they might have, ring up and tell the doctor they are wrong about it, and wait for the official confirmation letter with their actual info.

OP, posters on here are just going to get you more wound up as nobody is able to see what was written and they are relying on your interpretation, which could not be true to fact because you've had an emotional response and just one mistake/thing you don't like then can influence how you see everything else.

You need to talk to someone properly OR just get a note put on file refuting it, but calmly and factually.

OP, it seems you're as confused as I am about what has actually happened! I'd request a copy of your DD's school nursing record if I were you.

I will reiterate though, the advice you get here will be bad advice if your family is at TAC/CIN/CP and you don't disclose it.

I just cannot work out what her motivation was. It's been very easy for me to put together all test results etc etc but I'm puzzled by the gps response and the fact they haven't totally supported us

No there is no other agencies involved sa did a CAF assessment when first diagnosed to try and identify areas of help which was things like a direct payment etc then case closed

You have two problems here OP, the nurse and your GP.

Your GP does not sound supportive at all with that medication situation. Positively obstructive in fact :( Can you move surgeries?

Re motivation; if the OP has unwittingly been the first to benefit from increases support/ services, then there will probably be a host of agencies (eg first hospital) with a vested interest in discrediting her application/ her DC's needs in order to defend their decisions and stop challenges/ appeals. It could well be all about saving money.

Some people actaully enjoy being jonsworths and would be well suited to working for ATOS and the like.

Obtaining the school nursing file is proving difficult I requested it previously I'm having to chase it up daily now

This couldn't be a case of mistaken identity could it? I.e. she has your children's conditions associated with another family? I'd be suspicious that there may be a case of fabricated illness or something similar within the school and she has somehow crossed the details of the two families. Given that your children's conditions are testable and proven, along with the fact that the other details in the letter don't marry up (cleaner etc), it would make sense.

What's with all the angst?

I have type 1 diabetes. If I found a letter in my medical records from some nurse saying she didn't believe I had diabetes, I'd just think, "What an idiot!" and move on with my life. I wouldn't expect my GP or consultant or whoever to waste precious time writing letters and filing complaints and all the nonsense that's been recommended here.

The letter is irrelevant. Get over it.

No because I spoke with her in the phone and she had emailed the hospital (a lot over three months) about my daughter so it's not mistaken identity

@LovelyBath77 Atos do PIP assessments for adults, they have nothing at all to do with DLA for children (thank god!!)