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 poor thing ,what an awful situation. Do you think the GP isn't helping because they cocked up and shouldn't have stopped the medication? It really does sound as if you need to bring in help with a bit more clout - I'd try your local MP.

I phoned the House of Commons (in complete desperation) once and was put through to my MP's secretary (I was surprised as I didn't think for one minute I'd be put through). They were fantastic- give them a go. Good luck .

as you have not let her meet the children

She never requested to meet them to me. I didn't know she had gone in to school tilll after and itbwas thenachoolmwgo told me THEY had stopped her meeting my daughter when she asked.
At no point did she make any attempt to see or meet me or my children.
My only contact was when I phoned her

I'd have welcomed the chance to meet her it may have stopped all this happening if she had spoken to me I could have gone through things face to face with her, explained the diagnoses etc

Anyone saying you are overreacting is an idiot, this is outrageous

Sorry OP I misread that bit about meeting the children. But that just shows that she is not evaluating them but you. Have you had lots of run-ins with the school over the years? I think you are (understandably) angry with the nurse but that is the wrong place to direct your anger. The school is ultimately responsible for what's going on here and you need to get to the bottom of what their problem is.

I think it's a positive thing for the wider community that this letter is on file somewhere.
There seems like there is more to this, however if this school nurse is in fact a nutter then having a letter like this in a file is a good thing as surely there will be others.

I can understand why you are fuming, but of course your GP can't respond and give test results to this random. The GP however could get in BIG trouble for letting this letter get in your hands; surely that's confidential?

I wouldn't worry about proving your children's condition to anyone. Who are you even trying to prove it to?
The facts are there in black and white, and as long as it is not effecting your children's care in anyway so what if a crank thinks you are lying.
Her letter will be amount test results so it has no effect on your life.

Report the nurse in a non emotional way and move on. The GP can't take things off the file xx

Just to say - you can search the NMC register to see if her qualifications are up to date etc if you know her full name. I'd definitely be taking it up with them? She sounds highly unorthodox and unprofessional.

You'd be better taking it up with the person who actually wrote the letter

Absolutely, but as she's moved on, it should be taken up with the LEA.

The letter sounds both judgemental and unprofessional imo. You have proof of the medical conditions in the results of the diagnostic tests. The nurse was either unaware of these or chose to disregard them. Either way, she was bang out of order.

I wonder if it might be appropriate to report her to the RCN? Denying the existence of proven medical conditions is a pretty big deal and could be very dangerous.

I'm having a massive deja vu with this - I've definitely read it before albeit some time ago. Am I the only one?

Perhaps this freelance school nurse has done it before to someone else!

I only found out this year in may-I did post previously so may be me

Malpractice.

,Lakielady
Op has said she posted about this before

I've definitely read a very similar thing too. I'm sure it was about HCPs not believing the OP regarding health conditions....but it was before this school nurse fiasco.

I've never had any issues with other hcps only this school nurse. Which is good as they've all been hugely supportive and consultants have all written and supported us, the only issues we've ever had has been this nurse and oddly the gp

Maybe it could be influenced by levels of funding being cut and the nurse is trying to justify cutting 1:1 care? and saving funds?

She seems to be commenting on the level of care needed which I guess is fair enough, it is her opinion. It is when she says they don't have the conditions it is a bit confusing. I guess it would depend on whether she says they don't; actually have them, or if they don't show many symptoms or signs, which would matter.

It's very confusing. A dispute over level of care is one thing but when she has disputed actual conditions and thrown in other things it becomes more personal and as if she's being extremely unprofessional

A GP would rarely "refute" the opinion of a specialist - they do not have the expertise and it would extremely unprofessional. If there have been no repercussions from this individual's letter and your consultant(s) continue to be supportive, why not just forget about it and move on?

I cannot imagine any GP saying "Oh, we have all the test results back on this, which prove definitively that the child has X, Y, and Z, but clearly the expertise of this random school nurse outweighs the science".

I suspect the letter may have arrived and been filed without response, due to pressures at the GP?

I would take this up with the school in the first instance and ask why a nurse with no diagnostic expertise is being allowed to make decisions that override the experts.

The gp had put on all of our records that's what has annoyed me the most it wasn't just filed away it's been placed on all and why? I can't work that out

I think maybe an hour with a solicitor may be the way to go to get legal advice as I can't untangle it and do not understand her motivation or what outcome she wanted

So all the consultants have written in support of you and the school supports you. The GP supports the ongoing care

No one is paying attention to this ridiculous letter.
What exactly do you want to happen now?

Saying she does not believe your children have "disabilities" is not exactly the same as saying they don't have a condition at all. Could she mean that, in her view, those conditions don't necessarily affect their ability in the way you think it does?

I have come across situations where that has happened in the past. I had a client where the school and children's services were concerned that the parent was being over-protective because of a child's medical condition to the point that it was harming the child and hindering their development.

The same was suspected about a child in our extended family, but the authorities moved so slowly on it that the child reached 18 before it got anywhere.

I do not like inaccurate documents being placed on all of our medical records

So this letter has been placed in your records as well as your children's?

Is she gearing up to get you diagnosed with Munchausen By Proxy??

I'm appalled by this & yes I think seeing a solicitor who specialises in medical stuff to help you untangle it could be very helpful.