Fighting the world order chronic illness shouldn't be treated like this...

[LottieLou96]

It is great that so many of you have learnt the hard way to keep as much documentation as possible. 😉

They have lost my documentation many a times , very opportunistically. So my record has some small pieces from 2004-2008, a gap till 2016 with only one letter. And the rest is lost to a hospital where a bunch of notes are by all means hidden. Probs deliberately tbh.

When they mess up, some hide it,or loose docs. Others don't let you have documentation even when you ask through the proper pathways because they can reject on the grounds that they feel the documents will cause 'patient anxiety and distress' . It's just lies and excuses.

Anything important is not in my records so it perpetuates the problem. I have documentation that I kept as I could. But as a kid I didn't get alot of it unfortunately. They are trying to sell an untrue narrative and won't let me access my own medical records. I am not on any medication for MH and I know it's just med dics trying to cover their tracks always.

I let a lot slide from the medical negligence I experienced the first stint in hospital as a child. The unlawful use of restraints and no access to basic things and social isolation etc. I had lupus and yet the medical team thought they could make my life worse than it was before hospital

. It's'just anixety'. I have worsening neuro symptoms and lupus issues and they hold records from genetic testing done ten years ago and won't let me access them. Not allowed to see the scans or other things. My seizures are evolving and if the frontal lesion gets 0.4mm larger,then I will need biopsy and removal of whatever it is. Yet they say I'm anxious when I come with real issues and symptoms. That's not taking into account that the two MRI scans don't match up in any way. So who knows what's truth or lie?

My sister has just got access to her documents, she is identical twin, so DNA, genetics is somewhat important and they always referred on notes dually. And is going to try and send me notes of her /my results. As some of my notes lost' are in her record. again shouldn't be but is the case.

I feel a bit like I am drowning and fighting a loosing battle,honestly I don't care if it was MH or any other chronic condition,when will medics treat people like people. Everyone no matter what deserves access to treatment.

lottie

[Barnclown]

You DO deserve access to both your health records & to treatment: TOTALLY!

Am APPALLED by the way the system is handling your case, dear Lottie…& I greatly respect + relate to your determination to sort this out… by hook or by crook… this IS tough to do when you’re so unwell, though, & getting so little real help from the system

Which is where our community comes in: we get it! & we’re beside yiu all the way!

Sending you 💞💞💞💞

Coco

[LottieLou96 in reply to Barnclown]

Heya 🤗 thanks Coco,

Part of me thinks I'm going insane lol. Strange how you can tell docs medical stuff they don't understand and show them everything and it is, as you know, a complete joke.

And how some of my docs and results are in someone else's file haha. Literally I don't know what's next. I am close to admitting myself to a psych ward haha.

I know many have it worse than I, but if I ever get the chance to be Health Sec this is all going to have to change.

I can't even think properly anymore, so they'll probs win out, when my brain is just sludge.

💕❤️‍🩹❤️‍🩹❤️‍🩹💕

[Barnclown in reply to LottieLou96]

🤦🏼‍♀️ Do you think it’s that dreadful Catch-22: we have to become dreadfully acutely unwell before they really help us? Hate to think how many of us have had to be there…

[LottieLou96 in reply to Barnclown]

I do, and even then, depending who you get it can be dire or can be life saving.

I like the babies I'm dealing with but it's not so easy working as a pediatrician, it's probs the PTSD talking haha. But in my ED I liked how we would fix things very quickly often and make people listen who wouldn't. But that's why we also as a service are abused a bit.

If you are awaiting a hip replacement for years, just 'hurt' your hip and in ED I will give you a anaesthetic block and by the morning you have a new hip.

If you are awaiting a head scan, have a fall and 'think you had a LOC' then a head scan is back within the hour.

If you're honest about things it's potluck. I don't know how acutely unwell you have to be with lupus. And rheumatology hours are so short, and noone ever answers the phone.

It's like catch 22 2.0

[Barnclown in reply to LottieLou96]

👍😖💞💞💞💞