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

I found your previous thread. I can link it here if you want?

I think that you should complain to NMC. It's been over a year now and you're getting nowhere with it, so direct complaint to someone higher up should solve it.
I would probably put in the complaint that I feel like she has something against me personally, not the treatment plan or anything else. It sure does appear that way.

OP this all sounds very bizarre and unexplained. It must be very upsetting and confusing for you.

Do any of the conditions your child has have a support organisation? For instance, I have IBD and there is the National Association for Colitis and Crohn's Disease who offer support and advice. If I had a medical professional accusing me of fabricating my condition I am sure they would advise me on what action to take.

I have sought support from various places including one support organisation, also got together all medical letters plus proof that activities are accessed I'm not keeping the children locked away or stopping them doing anything.
I've also got character references as can disprove the attention seeking allegations.
Having to do all this is exhausting and upsetting though I think today after another day of getting nowhere has really got to me and it feels like if you have the title of nurse you can do what you like

I have stated to the gp I feel they should have identified this nurse was not acting in our best interests and although they've said they cannot remove it I would like them to refute it and add a note to it not keep saying she was expressing concern and had investigated as white clearly she hadn't at all! It's frustrating as they have all the tests etc in front of them they can see what she has written is wrong
I wanted them to give me a letter Refuting it and that to be alongside it in records

I believe that may be your issue.
They will not write a letter refuting it, you need to do that and ask for your letter to be placed alongside hers as a challenge to what you believe is inaccurate information. You could put what ever you wish in yours for example you could even include a copy of a letter of diagnosis from the consultant.

OP if you honestly feel you've exhausted all avenues and aren't getting anywhere, I would advise you to get a lawyer. A lot of your comments focus on the 'why', something none of us know the answer to. You're just going to drive yourself mad.

TBH as a community paeds nurse for 38 yrs none of this behaviour adds up. Are you sure she hasn't got a hidden agenda and is biased against you or your family OP ? I have never heard of a nurses opinion being listened to by a GP let alone being acted on , who the hell is this woman, she must have some unknown influence or are your GP'S completely incompetent. I hope you get some peace with this very soon my dear it is very upsetting for you .

Yes it does feel like I'm going mad as all I can see is false allegations and my evidence so it seemed initially that it would be straightforward to sort out and it's been anything but. I wasn't expecting that

What but you DON'T have to do all that! You are running yourself ragged gathering info and character references (?!!!) to dispute one letter that you haven't got to the bottom of and want to provide this information for what? You can't add a pile of character references to your kids medical file. Yes, you can dispute what the nurse said and if she is wrong you certainly must do that - I know how damaging it can be. But providing character references etc is just silly, I'm afraid. They mean nothing, are a waste of time and your emotional energy, it will just wind you up further.

Find out what happened and go from there. I often find there has been some miscommunication somewhere that has lead to something else. I instantly turn into a hothead when I find a mistake or some nonsense and have fired off some spectacularly angry emails in my time but the initial anger fades quickly and reason follows to get it sorted. You don't seem to have steppes out of the hotheaded panic phase

But why would she be she hadn't even met us ? It's very confusing the only issue I can think of is that we were getting 1:1 support in school and she did t seem to be happy with that a huge portion of the letter is about the anxiety among school staff and the fact dd shouldn't need 1:1 also allegations I'd set the level of care and I'd don't inappropriate training which is all untrue

OP what is your MP like? Some are really supportive with concerns similar to yours.
Do follow up the contacts suggested by posters who seem to know what they are talking about.
I hope you can get help to sort this odd situation. The nurse should somehow be asked to explain what she did and wrote.

So are you going to contact a Solicitor, OP? This is an internet forum. You need to get real help.

I just felt that the best way was to counter every single sentence and to get evidence to do so

Yes I think our mp could be very helpful as far as I'm aware there are regular surgeries I can go to. I had looked into solicitors but not had much luck with finding no win no fee so was going back to trying to resolve through the gp complaints etc. I also really really need the file but it's not forthcoming

It is no wonder really. You've experienced a few people closing ranks and being obstructive rather than acknowledging the obvious problem. It can be quite maddening. Gaslighting you a bit as someone else said. It is important to you, but others can just shrug/ bluff and walk away. That can make anyone feel powerless and as if stuck in a parallel universe! AIBU doesn't help with that!

To combat that, see what help you can find in real life ASAP so you can hopefully get some support with chasing and writing letters etc. An adovcate can't tell you what to do/write but they can act for you with your instruction and be a proactive support. CAB can advise too. PALS might be helpful.

And remind yourself of the lovely hospital team you have now :)

Have you put in a complaint about the GP stopping a script off the back of an anonymous phone call? That's horrifying - she could've been anyone!

You mentioned your child suffers from auto-immune conditions OP, I fear this may be part of the difficulties you're having. I'm not a health professionals but my mum suffers from a rare auto-immune disorder- I think genetic, that took years to be diagnosed culminating in her being medically retired. In her experience most nurses/junior doctors just don't have the training/knowledge to give her the appropriate care when her illness flares up. Numerous times she's been fobbed off with anxiety/depression.

Immunodeficiency research is still really in it's infancy and not well enough understood. Overall Inthink you need answers as to why this nurse was looking so closely into your case and take it from there.

Why look for a no win no fee lawyer? That's all about compensation.

Find your MPs email address and copy them into any email correspondence, mentioning that you've done so in the email (incase the other recipients don't realise). That may be enough to kick their butts. If not, your MPs team will have some knowledge of what's going on which will help if you then go to see them/contact them.

Get the file before complaints, so you know what has happened and can pick up any miscommunication/misunderstanding.

It sounds like she was requested to review things and may not actually be a 'school nurse' ?

OP can you access an advocacy service?

It sounds like this whole situation is really stressful for you. If you could have someone alongside you for support it might help?

This has echo's of something that I heard a few years ago. The child had Type 1 diabetes and Celiac's diease, the mum worked hard to get a 1:1 and everyonr said she wouldn't succeed. Someone at the local LA got really pissed off about it did their evil best to discredit the family and mother to revoke the funding as they didn't believe it was deserved. They didn't succeed though.

a huge portion of the letter is about anxiety among school staff

OP, there you have it.

It sounds as if the school has concerns and has called in this nurse to do an assessment. As you have not let her meet the children, what she is assessing here is the care plan you have requested, and what I guess could be a school file on your dealings with staff.

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'm not saying she is right and you are wrong, just that she could mean this.

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

Again, it sounds as if she was concerned that you were asking for them to be given too much of their medication at a time, and perhaps the GP temporarily stopped it on this basis. My DC have a condition and the amount of certain medicines that their consultant says is safe to use is greater than a nurse would recommend (ie more than the maximum dose stated on the bottle)

You need to make an appointment with the school and ask why this woman was brought in, and get to the bottom of their concerns. I strongly recommend you take a friend with you who can advocate on your behalf if needs be but also make notes that you can go over afterwards.

2 sides to every story.

Quite simply, get some real life advice.

If there are consequences, speak to a professional and handle them. If there are no consequences, move on. Ask for a note to be added to the file if need be but let it go. Getting some proper, balanced advice from someone who can review the reality of what happened will help more than an internet forum.

Seems pretty obvious to me someone wanted your DD's 1-2-1 (and possibly more) taken away.

I don't necessarily mean the nurse specifically.

The quote you posted sounds as thought it's about YOU, not your children, and perhaps referencing a continuous pattern of you seeing illnesses and disabilities where there aren't any.

Are you on disability OP? Or get help for it?

Sounds like a nightmare.