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

OP, does she specifically say that the children do not have medical conditions and you've fabricated the whole thing OR does she say that she feels it's been exaggerated, there is no medical evidence to support the described effects/needs or to support 1:1 in school?

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

That removes a layer of complication at least! Can school provide you with a number for the school nursing team? You need to talk with the team leader (or whatever that particular team's equivalent is) about why that letter exists, what informed the content, etc.

This seems huge but it sounds like you have no context at all. Understanding how this cock up of a letter fits in to the rest of her school nursing file will help.

DailyMail the nurse tried to get the OP's child's disability payment stopped, her school support stopped and her child's medication changed - and it was. The GP took a school nurse;s view over the consutltant's.

That kind of thing matters. This is not harmless idocy. And an 'idiot' nurse can never be harmless.

Specifically says they do not have conditions and also makes reference to the involvement of specialist clinics and that I have over medicated and over medicalised.
There's a huge amount of random stuff (childcare and cleaner etc)
Allegations I deliberately prevent them accessing any activities, joining in at school etc I've even had to get letters to prove that they go to other activities and that we don't stop her doing things, may need extra support whilst there but still join in.

Who employed her as an agency nurse? As they will be responsible for her actions while acting for their organisation

Why are people picking on the OP? Of course she's right to be livid. This nurse has lied.

I spoke on numerous occasions to the manager of the nursing service she told me to stop calling and put it in writing so I did and she said they could not help as cannot disclose personal identifiable information (?)
I then requested subject access request for the file which I haven't received yet

The schoocimmunity nursing team. Yet they won't engage with me directed me to PALS and would t help at all. I assumed the manager would have employed her and be responsinke for her actions whilst working for them

doobree Oh really? Strange how all the OP was ranting about for pages was that the GP hadn't taken time to type a lengthy rebuttal and file it along with the letter.

And strange that she said there had been no consequences from the letter.

Could the childcare and what you assume to be a cleaner, stem from you getting direct payments?

I even asked for the name of the first nurse I met with and she told me she was unable to tell me which I found very odd

No thet haven't been any consequences-yet. Still waiting on the dla renewal and I have to say it's caused me a lot of stress.
The direct payments are not to be used for cleaners or childcare as such it's short breaks and we have to submit receipts etc for an audit so it's easily proven what it has been used for. How would she have known anyway ? The school weren't aware as hadn't told them it seems very odd

Try to get some RL support to chase this up.

If not a solicitor, there are specialist adovcacy services that might be able to help you with this OP.

You aren't the unreasonable one here.

Go to the NMC for help. Call them they will be helpful.

I'm struggling to untangle it all

Why she went into school
Who asked her to go to school
Why did she bombard the hospital trying quite obviously to get something to discredit me
Why did she then produce this letter and circulated it
Why didn't the gp step in
Why won't the manager of nursing service take any responsibility or engage with me

DailyMail clearly the OP is trying to be vague enough as to not give it all away, but enough to give us the gist. Also is understandable stresed about this.

One of the consequences was medication stopped even though it is prescribed by the consultant not the GP.

Others have managed to follow what the OP has said.

What You need to calm down. Yes, you can prove what you spend your direct payments on, I know how they work, but you have no need for this and are getting bouts of being OTT.

'Short breaks' or respite is often termed as 'childcare', it's the way some people phrase it. It could be that she's just interpretted/worded it a different way than you would or that it's written incorrectly in files.

You don't need to tell the school about your direct payments, but I would assume that medical/disability related professionals are aware and therefore it would be within her medical records? I know details of my sons previous and current respite etc have always been in files and professionals, paediatritions included, always ask how it's going, if it's changed etc during reviews.

It has been written in such a way to make me appear to be a liar, attention seeker, control freak and lazy. It's very unprofessional and unpleasant to read. Not to mention the fact that it took me a while to get actual confirmation of who wrote it (I had to be certain to complain and have proof) as she had circulated it without a signature or name

Hang on, so medication etc was stopped on the basis of an anonymous report?!

How does it make you out to be lazy?

WhatThe I totally understand all your questions.

Have had slightly similar situations and it is hard because sometimes you will never learn why someone does something so destructive/ malicious etc. And even if you find out their reason, it still might be utterly unreasonable to you.

The wondering can drive you nuts if you let yourself dwell on it.

Instead, try to focus your energy on following up with CAB/ advocate/ legal advice/ professional complaints etc and do what you can to limit further repercussions.

Remind yourself that you do have a very supportive hospital team and that they have proven themsleves to be allies when others (GP) have let you down.

Perhaps write a short letter/email to this team to thank them for their support and let them know this issue has worried you. I'm sure then they'll be primed to do what they can to support you.

Maybe a carer's assessment could help you? And/or a carer's group/ organisation might be able to provide someone to talk to in real life who will understand the stresses of DLA etc and be supportive.

Medication was stopped after she phoned the gp the letter was written a few weeks later

So she gave her name when she phoned the GP? How do you/ they know the letter is from the same person or indeed from any legitimate person if it was not signed?

It sounds like you have 2 complaints:
Firstly regarding the actions of the agency nurse - is this the main issue?
Secondly that the GP appears to have filed the letter and not recorded any comments about or acted on inaccuracies?

I'd really recommend the following with regards to your concerns about the school nurse:

• write a factual, chronological account of what happened, keeping it clear and concise
• set out your concerns, and what you would like to happen next
• if possible get a friend or family member to proof read it for you

Stop contacting the school nursing team directly, forgo PALS, and send this to the Chief Executive of the NHS trust/organisation responsible for your school nursing service - they are responsible for ALL care provided by that service, including agency staff. Header it as a formal complaint and refer to their complaints process (you should be able to find it on the NHS trust website). The organisation is then bound by its complaints policy, and responding to you officially within a set time period and carrying out an investigation. They won't be able to address complaints about the GP as they are separate organisations.

You could also send the same or similar letter to the NMC - but the process may be longer than the NHS complaint.

The above is all very bureaucratic - navigating the NHS can be tricky when things are going well, it's so very stressful when they're not, but both you and the school nursing team have the right to have this investigated properly and fairly.