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

Hi again WhatThe

This is a health advocacy service (charity) www.seap.org.uk that cover a lot of the UK so hopefully have someone who can help you where you live. They have helped us in the past.

It is helpful to write up a clear and concise timeline of events for when you give them the details.

They can hopefully help you with what you can practically do and expect to happen to limit the damage and having some support might help you not not dwell on the whys. We might not ever know why people do stuff, but getting them stopped is very important!

OP, this is horrendous, and I totally understand why your are so upset and frustrated by both the original letter and the subsequent stonewalling of all the organisations you've appealed to for information and rectification.

Just a word of advice though, when pp here have asked you if there have been consequences to the letter you've consistently said no. That has lead to a lot of pp saying you're overreacting. BUT, there HAVE been consequences and I think if you highlight these then you'd get further.

So in contacting these agencies lead with these complaints.

1 Your daughters prescription was stopped by your gp on the recommendation of this 'nurse', medication that was consultant lead. That is an appalling consequence! You then had considerable stress reinstating it and your confidence in your gp has been undermined.

2 ALSO you have stated that the dla appeal has been delayed while they investigate the accusations of the letter... that is a real consequence regardless of whether it affects your benefits in the long term, it has caused a delay and you have suffered unnecessary stress because of that.

3 You have no idea what further delays or implications that letter being on file may have for your dc in dealing with future claims / support / agencies, which is also causing you unnecessary stress and worry.

Those are three very real consequences!

In your shoes I'd be livid too

Sorry, haven't read all the thread so might be duplicating but a couple of things:

This is useful for info on requesting changes to medical records: <a class="break-all" href="http://webarchive.nationalarchives.gov.uk/20130513182122/www.nigb.nhs.uk/pubs/amendrecords.pdf" rel="nofollow" target="_blank">webarchive.nationalarchives.gov.uk/20130513182122/www.nigb.nhs.uk/pubs/amendrecords.pdf

Is there a charity or support organisation for the conditions your dc has which you could contact for advice or support?

Just double checked. SEAP does seem to be south of England focussed, but I know they were able to refer a family member to services in the north of England and give some good general advice on procedures etc. Hope they can help

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)

That is not an acceptable reason for stopping the prescription. A consultant has determined the dose, it does not matter what a nurse who has never met the children thinks. The GP should have sought clarification from the consultant first, not just stopped prescribing on the word of this person. Especially if the GP had all the proof of diagnosis and test results. It all seems a bit sinister OP. I think you need to go through PALs or one of the other organisations on this thread, someone needs to step in to help you as you appear to be getting nowhere.

She is outrageous, but you seem to be spending a lot of time wondering about her motivations for doing this rather than escalating this. It doesn't matter. She (and your GP) has committed several unprofessional acts against you.

You need to approach PALS/NHS and NMC in a factual, dispassionate formal complaint against this nurse and your GP.

The facts are:
1.) Nurse diagnosed/assessed a person without ever seeing them
2.) Nurse sent malicious letters based on false information
3.) GP allowed a person who has never examined DD to change medication requirements without consultation

Those are the issues and are serious medical unethical breeches. Don't get caught up in what she called you (although she is wrong) etc etc. You need to focus on the clear, unethical and malpractice behaviour.

You seem to be spinning your wheels a bit. You need to draft a formal, written complaint to NMC and the NHS complaint body. You need to be clear in your requests to rectify the situation: 1.) How will this malicious and false letter be removed from your file 2.) Why was this able to happen and 3.) How is this going to be prevented in the future.

Stop wondering why she did it, because honestly, does it really matter? She did it, and you need to be calm, factual and dispassionate as you escalate this.

Once you have rectified this medically, I would then go to your school governors with the confirmation letters acknowledging the misdeed to make sure this woman is never hired again to be around your child.

Yes, OP could simply write one letter with those points and CC it, couldn't they. SEAP may also help.

I will go thru this thread when I have more time but the OP, WhatTheActual... etc has touched upon something I'm all too familiar with; the way health professionals stick their oar in on your kid or parent's medical notes and smear the relatives, esp if they think you are too involved aka uppity. It really is a free for all, it's tittle tattle in the extreme with no repercussions, some of them really get off on it.

I've had the same with my mother's medical file - she has been in a nursing home for a few years, and yes, when you raise a legitimate complaint, they all close ranks quite spectacularly. You only find out about it when you make a Subject Access Request to the Council getting them to disclose everything they've got on you, in particular on your relative's care file, you can also ask for email correspondence, and then they (in my case, Surrey County Council) do everything they can to stonewall and delay their response.

Yes, make a complaint but don't put your heart and soul into it, it will get burnt out. The first response will be to mess you about, to fob you off, string you along and send you away with a flea in your ear, so expect that - you then go onto phase 2, but they'll be hoping you'll be so demoralised that you won't.

If you think anyone in authority will be as outraged as some of the posters on this thread, you are very much mistaken. Public bodies, ironically, despise the public you'll find.

But yes, also, you do need to get your rebuttal in and on the record, as they set a lot of store by these allegations being made in secret, because if you don't know about it, you can't rebut it, so therefore it is deemed 'true'. Mad, I know, but that's how they operate.

Honestly, the woman sounds unhinged! Making up mean things about you is one thing but to contact your doctors and get your daughters prescription changed with involving you or even EXAMINING your daughter? How does she know that wouldn't do real harm and under what authority could she do this?

To me THAT ought to be your complaint...

I have had this happen myself a bit with PIP, although not as bad as the OP- with me it was the DWP decision maker (not medically trained) picked up on a letter written by a junior registrar at a follow up appointment where he stated I was 'relatively asymptomatic' in one condition- they then went on to basically use this as a change in circumstances and withdrew my PIP- without even an interview.

I agreed with the letter- but what they didn't realise was that still meant it needed careful management - in the past had needed NG tube and CT scans, and I have described clearly how we managed things with diet and bowel rest at home, meds etc.

Thankfully, the appeals tribunal, (who are medically trained) looked at me care plan and letters and I won back the PIP appeal on paper- so they do look at the overall picture and I think specialists more than nurses. However it is also about how the condition affects you, rather than the condition itself, so this nurse's opinion may cause problems.

Does anyone know if the OP can actually get this letter removed from her records, completely? Is it possible to do that?

It might be valid but make a formal complaint against the school nurse to the employer and push at it, maybe go as far as contacting the NMC about it.

They are keeping the letter on file for their records. They can't respond to random accusations in a letter because it would be a breach of your confidential information and data protection. Does it matter if the GP is not acting on the letter. How do you know about the letter on file?

Also just to add...the letter probably appears to be unsigned because not all of the pages have been photocopied in their entirety. Often p2 and beyond has the signature.

Good luck OP, I hope you get to the bottom of this. Really, isn't it hard enough having dc with health needs without people earning a living out of making it harder as a futile cost-cutting exercise?

I wonder how much school nurse/consultant person cost and how much professional, highly costly time was spent on her wild goose chase to shave a penny or two off a budget. All in vain.

op who does this woman actually work for is she is an 'agency' nurse?

Are agency nurses who don't have a contract with the school allowed access to confidential school records?

My post got deleted because it named names, but the gist of it was, do not trust the Nurse and Midwifery Council because they will also lead you by the nose into a complaint that comes to nowhere. Complain, yes, but don't expect much because its priority is to protect its members, not you nor the general public.

There is the story of the fellow who made a Subject Access Request to the NMC, and it costs many many thousands because basically they'd got a file out on him after he sought to complain about midwives who he thought were responsible for his kid's death.

www.telegraph.co.uk/news/2017/01/31/health-watchdog-spent-250000-lawyers-hide-information-bereaved/

And Nursing Times:

www.nursingtimes.net/news/professional-regulation/nmc-to-be-investigated-over-handling-of-morecambe-bay/7015781.article

In my case, I reported care home staff in Feb last year, they took until Nov to investigate and my complaint was not upheld. They'd done the trick of doing a callback where they run through the complaint supposedly to firm it up, but actually to water it down - it's a social services' ploy as well. So the more serious complaint I made was - get this - reduced to just one single line!

When I got annoyed about it over the phone, well, they never got back to me about the third, most serious complaint and that person is still registered with the NMC, so really they will string you along until they are rumbled, in my experience.

OP, I have had something similar happen.
What NewspaperTaxis said is all so very true, sadly.
Eventually, we moved to get away from it.
It has not (yet) followed us.
You have all my sympathy.

As a pp says I wonder whether this was prompted by the school/LA who were dubious at having to provide a 1-1 when they didn't think that level of support dictated by the hospital was necessary. The line about "staff being anxious" being the clue.

eg - my DS has severe food allergies. All proven by testing, has epipens etc. This has been known to make staff at his schools anxious in case he has a reaction. (OK he doesn't have a 1-1) He has to have some allowances made for him. I can understand how people might think that "maybe he's not as allergic as all that." I found some cheap chocolate chip cookies from the local Spar that were OK for him. I can imagine someone seeing him with them and thinking "God that bloody woman has us running rings around ourselves making sure that kid is never exposed to milk and has to have special this and special that and then he sits there eating sodding chocolate chip cookies!" not knowing that they are OK for him as they are so cheap they don't have any milk in them. They might then question whether he is really as allergic as I have claimed and whether I am milking it when it suits me. It does worry me that that might happen. Well it won't now as he did eventually have a reaction to those cookies anyway so that's that.