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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

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

321 replies

WhatTheACTUALaarrgghh · 17/07/2017 19:29

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 posts:
Original poster
WhatTheACTUALaarrgghh · 17/07/2017 22:16

There is a long history of whatthe gaining financial help and services due to supposed disabilities. This includes daily childcare and household management not deemed to be necessary as the needs and conditions she has expressed are not genuine or proven

OP posts:
Original poster
WhatTheACTUALaarrgghh · 17/07/2017 22:17

I consider that to be calling me lazy and a liar

OP posts:
TripTrapTripTrapOverTheBridge · 17/07/2017 22:23

That doesn't say you are lazy. If that was me I would be furious that I was being seen as someone obtaining things they were not entitled to - deceiving people to receive things. I wouldn't think 'omg they called me lazy' Hmm

I thought the 'needs ' would be questionned and imagine it's more about perceived need than having any conditions per se, especially if it's unheard of for the needs and 1:1 for the specific conditions.

I think you need to find out WHY this was looked into, and go from there

doobree · 17/07/2017 22:23

The OP has said she already has a lot on her plate and has found this stressful and strained the relationship with her GP when they stopped the medication.

I'm not enjoying any of this thread. I can sympathise and empathise when someone is dealing with a lot and is at the end of their tether.

Some people have too much power and can and do wield it unfairly. If you have been in that kind of situation you will understand the stress. If not, then you might wrongly believe it can never happen/ not be so bad.

If the GP had simply said " yes, that totally innaccurate letter - don;t worry it is noted as being inaccurate due to X,Y,Z" and oh, and I'm sorry for contradicting your consultant. I should have talkked to them if I had concerns", the matter would have been pretty much over.

Thankyouforthemusic · 17/07/2017 22:24

If you haven't had the results of your SAR within 40 days, you can complain to the Information Commissioner's Office

bbcessex · 17/07/2017 22:25

I have no advice OP, but anyone thinking you're over reacting is absolutely bananas, imo.

HOW DARE SHE? Who requested she review your children's diagnosis' and decide she was more qualified than the specialists? And to request meds stopped?

I think you're actually being very restrained . How fucking dare she Angry

Original poster
WhatTheACTUALaarrgghh · 17/07/2017 22:26

She had also stated she did not believe that conditions were present and stated there was no medical evidence it's not just about needs it's her questioning the very existence of diagnosed conditions.

I will seek further advice and make a complaint to the NMC. I'm just very angry and frustrated about being treated this way

OP posts:
BeyondDrinksAndKnowsThings · 17/07/2017 22:26

"supposed disabilities"
"not deemed to be necessary as the needs and conditions she has expressed are not genuine or proven"

Shock

If those are direct quotes (and it sounds as if they are), I don't know how anyone can think YABU

Heartburn247 · 17/07/2017 22:27

I'm not trying to be rude here and I have read the entire thread.
It sounds to me that the biggest consequence here is that you are about to lose/have reduced whatever monetary benefit you currently receive.
Understandably this may impact your finances unfavourably.
Many many posters have given you correct procedures of who to complain to about all of the untruths - don't waste your time on here, complain to people who can actually help you. We can't.

Original poster
WhatTheACTUALaarrgghh · 17/07/2017 22:27

Yes direct quote was in bold

OP posts:
doobree · 17/07/2017 22:29

There is a long history of whatthe gaining financial help and services due to supposed disabilities. This includes daily childcare and household management not deemed to be necessary as the needs and conditions she has expressed are not genuine or proven

That is an accusation of fraud and is a very serious allegation that could have serious repercussions.

Lazy, lair, fraudulent - who knows what the nurse is thinking.

You can't expect someone to just shrug and carry on watching TV!

ginnystonic · 17/07/2017 22:29

Just a bit of a side note here, it is your right to request to see your files and all information and correspondence concerning yourself and your children at any time (from doctors, health care professionals, school etc) it has to be fully disclosed.

If you ever wanted to go through everything said about you.

LaMontser · 17/07/2017 22:29

I would complain to everyone. Information commissioner re the data and inaccurate records; nmc about her frankly weird behaviour; and Cqc if she's a nursing agency as they have to be registered there too. I'd also go to your local authority or whoever commissions school nursing in England. Frankly I'd go to gmc about the bloody gap stopping the prescription on her say so too.

The treatment she's dished out is atrocious and I wouldn't let it go. If you have a representative organisation that can advocate on your behalf I'd ask them to help if it's too much with everything else on your plate.

Original poster
WhatTheACTUALaarrgghh · 17/07/2017 22:30

My main concern is that she has cast doubt. Rationally I know I have all the proof but another part of me worried that if this is how I am perceived and I don't know where else it was circulated what if one day I take the dc unwell to hospital and it's disregarded as they think I'm making it up and something awful happpens.

The worry over dla is not as great as they also have all the real evidence and can I hope work out for themselves that letter is totally inaccurate but still the added delay because of it has been very inconvenient (they had to investigate though which has added weeks onto the renewal)

OP posts:
CircleofWillis · 17/07/2017 22:31

OP I definitely do not think you are overreacting. To the PP with diabetes would you still be calm and laugh it off if you had your insulin or tablets cancelled and were forced to contact a hospital to get the go to reinstate it? I think it is important to have the claims in the letter discredited as it could be used in the future to delay or deny essential care.
Short breaks are NOT the same as respite as you go away somewhere accessible as a family which would otherwise be very difficult or unaffordable. Respite is when you are given a break from the physical and emotional strain of caring with a child with additional needs.

TripTrapTripTrapOverTheBridge · 17/07/2017 22:31

I understand your anger but you have to realise that if you make a complaint you cannot add in things such as 'she's made up malicious lies'. You also need to look objectively and figure out where some things have come from (like my example with direct payments type thing) because if your complaint is full of things that aren't an issue and aren't right then your whole argument looks weaker

Sugarformyhoney · 17/07/2017 22:32

Could it be that she thinks that your children's disabilities don't impact the children in the way you feel they do?

TripTrapTripTrapOverTheBridge · 17/07/2017 22:33

Circle that's incorrect. Short Breaks does not mean the family go with the child. Short breaks can be the child going somewhere with someone else etc.

IStoleDipsysHat · 17/07/2017 22:34

If you get nowhere with the above then it's time to contact a solicitor. What she has reported may well come under professional misconduct and there are solicitors which specialise in this area, some of them operate on a no win no fee basis. I know it's not compensation you are after but if that ends up being your only recourse to rectify and amend your records then you must use it.

TripTrapTripTrapOverTheBridge · 17/07/2017 22:34

Just to add, short breaks can also just be a couple of hours a day

Original poster
WhatTheACTUALaarrgghh · 17/07/2017 22:34

She very clearly didn't think they have any disabilities at all

OP posts:
NeedsAsockamnesty · 17/07/2017 22:38

How are you wording your issue to the doctors surgery?

What is it you are actually asking them to do?

It may be that your not explaining exactly what it is you want to happen or that they legally cannot do it.

It can be really hard to get things removed from records but you can have things added to them.

I remember your previous thread, am I correct in thinking that the new hospitals management of your child's condition has really helped?

Fwiw I have a feeling I know which road the nurse was going to go down or attempting to lead the way for someone else to follow, and having done the job I did for a long time I would be very concerned about it being there as well.

You get a referral for any reason to children's services that letter is going to be there, it's going to be viewed as factual because it's there and that could cause issues

doobree · 17/07/2017 22:40

WhatThe I do understand your concerns.

From what you have said I am sure that you will have ongoing support from the consultant though so I would try not to worry or 'what if' too much. The nurse's letter will stick out like a sore thumb I imagine and her contradicting of medical fact makes her opinion very questionable.

If it might make you feel better, you could try making a copy of any diagnosis letter(s) and keeping it ready/ in your bag to take with you to any medical appointments. Just as a back up so you can feel you have something to whip out if necessary and a phone number to give.

Try not to feel paranoid or defensive though, but know you have a letter in your pocket to back you up if the situation warrants it.

Original poster
WhatTheACTUALaarrgghh · 17/07/2017 22:42

Yes the old hospital was atrocious and she was so ill under their care.

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

OP posts:
NeedsAsockamnesty · 17/07/2017 22:44

Short breaks are NOT the same as respite as you go away somewhere accessible as a family which would otherwise be very difficult or unaffordable. Respite is when you are given a break from the physical and emotional strain of caring with a child with additional needs

Some areas use a short break scheme to either provide a set amount of hours of activities often provided via something like barnardos subsidised (LA pays a small amount but parents still pay around £10-20 per short session) or to give a lump sum of around £450 a year so the parent can pay for these from a different provider or use them to provide additional assistance that a kid with a disability may need to access an activity.
It can be a unpleasant side effect that the scheme is used to replace respite or for the parent to be fobbed off when they make a request for respite.
Different places will have different arrangements for their 'local offer'