NHS won't show me my notes

[SnowWhiteAndTheTwoKids]

I've had day surgery today, just a local anaesthetic, nothing major, it was done in 15 minutes. After the operation they said there were no doctors around to do my discharge paperwork so they would post it to me. They asked if I was okay with that or did I want to wait an unknown amount of hours for the paperwork. I said I was happy to get the paperwork in the post but please could I just have a quick look at my file? Nurse said "No, the notes are confidential." I said I just wanted to have a quick look at the info the consultant had added to my file and would give it right back to her. She went off and checked with a senior nurse then came back and said I would need to make a formal information request to see my file.
Why on earth would they be so cagey about this? When I gave birth I was given my notes to look through and it was all very transparent.
YABU - you should trust the NHS and not ask to see your notes.
YANBU - you should be able to read notes about yourself after an operation with wasting more NHS resources on a freedom of information request.

Handy that I'll get this discharge letter in the post in a week then. 🤣

Medical notes are matter of fact and blunt. They can also contain language that the layperson wont understand. The notes are for the hospital and other professionals, not the patient.
I would not understand my notes... that does not make me stupid. My notes are not for my eyes.

There you go being ableist again. If someone isn't able to perfectly understand their notes they must be completely stupid?

You don't seem to be understanding that your opinion doesn't matter, they're following the law and their reasoning is sound if you looked beyond the tip of your nose. And actually it is part of their job to protect you from reading notes you don't understand while in their setting. It's safeguarding.

Wow, that is so horrible. I a.sorry that happened to you and you lost something so precious to remember your boy. Some medical professionals are totally assholes.

I kicked off about it, as I felt it was a pic of my ovaries, so I should call the shots, but she was immovable. It was so much less important than yours though 🙇‍♀️

It makes no difference whether you're perfectly capable of understanding it, they'd be breaking the law and risking their careers by just giving you the notes and not gong through the proper channels. If you want to complain to someone about it, complain to the government, they're responsible for the passing the various Data Protection acts and GDPR.

You see this I perfectly understand and makes sense. What's very confusing here is that we have some people who clearly work in this area who believe the purpose of these rules are to protect patients from misunderstanding medical stuff and getting their silly selves upset. If they don't even understand the reasons for this, then it doesn't surprise me that so many of them are failing to explain it to patients.

While he was operating on me. It was a local anaesthetic so I was awake.

Since when is there a specific data protection law that allows hospitals to redact data from a patient's notes on the grounds that they may not understand it and might get unnecessarily upset? And I'm not talking about the law here anyway, I'm talking about the explanations being provided by several people here as to why they might want to redact some of your notes before they're given to you.

Most likely the Drs are in theatre or AE and got caught up unfortunately. But I think they should have looked at the plan on the notes and if you were due meds to be prescribed waited or at very least made a plan for the morning of you were ok with that.

There are multiple reasons data has to be formally requested, then processed and signed off by, I believe, someone non clinical from a GDPR point of view. It's not a one size fits all, the blanket is "there might be things you shouldn't see." That can be because the data is sensitive and made up of opinions from other people, warranting confidentiality or it can be that the staff member isn't able to be responsible for the reaction of the patient, especially if vulnerable. Other reasons include not having staff available to sit with you while you read the physical notes and you shouldn't be left alone with them or it undermines the validity of the notes. You could remove or tamper with the notes.

I have no idea why you're wittering on about ableism. But anyway, if it is the law that they're entitled to redact my notes to protect me from reading things I don't understand then the law is an ass and needs to be changed. Telling me it's the law it's not a convincing argument that it's a good thing, you know. And if medical professionals have decided that it's their job to refuse to give me information to 'safeguard' me from getting upset as a result of misunderstanding something, then they need to change the definition of their job. Because that's a god complex, not a profession.

There is info here about the exemptions/reasons health data can be redacted https://ico.org.uk/for-organisations/uk-gdpr-guidance-and-resources/individual-rights/right-of-access/health-data/#:~:text=You%20are%20exempt%20from%20complying,mental%20health%20of%20any%20individual.

Because you're being ableist, that's why. That should be obvious for someone who is apparently not completely stupid as to not understand any of the medical terms on their notes..

Nobody has said that particular data will be redacted, just that its one of the reasons you aren't able to view the data directly in the medical setting. What you read when you request them formally at home is your business. What's redacted after your formal request is any data not relating directly to the patient (such as non medical opinions) or any information likely to cause harm to either the patient or someone else.

So it's a mixture of good reasons and good old fashioned medical paternalism.

No they are not written for you. They should be in plain accessible English but there are still times you may not understand them. They should still be completely available to you. If you don't understand them you can look the terminology and the concepts up. If you can't do that you can employ someone to explain them to you. It's not the NHS role to police what you do with the information.
I am an NHS professional who gets sick like anyone else. I always ask for a copy of everything. I always understand it. If on rare occasions I didn't I'd look it up or get help. Things are moving towards this. It will happen. We have to be the overseers of our own health care. No one else is going to do it. I would never write anything in records that couldn't be shown to patients.

Oh I get it now, you took one sentence of mine insanely literally and you like calling people isms. That doesn't work on me. Oh I suppose I just offended people with mental health problems by using the term insane as a descriptor. How problematic of me.

People on this thread, several, have most certainly said that one of the reasons you can't just see the notes is because you might misunderstand them and get unnecessarily worried. One suggested that then the staff might have to take care of your upset self. Obviously the implication is that there's a right to redact the notes on that basis when they're provided to you.

Of course you would. If I phoned a GP to say my mother isn't well enough to keep her driving licence anymore you would have to note that. But GDPR states that my mother, when requesting a copy is not entitled to see that particular entry. So either you'd breach GDPR and show her, or you wouldn't write it down in the first place which is equally negligent. So which is it?

You may not have a need, yet, to have written anything a patient couldn't see but that doesn't cover all NHS professionals and the rules are there for all.

And the notes are available to you, just follow the process and request them.

Exactly this, thank you. No one is obliged to see their notes if they don't want to. Those who can't/don't want to understand them, think they might get upset about them etc, are free to never see them. The era of protecting the rest of us from ourselves against our will is ending.

Insanely literally? How else do you expect people to take "some of us are not completely stupid and can understand perfectly?"

You've mixed two reasons, and come up wrong. It's a reason you cannot just see the notes willy nilly in person the minute you ask. They are not instantly accessible notes. It is not a reason to have the data redacted when you follow the process to request your notes, unless the data will cause harm to you or someone else. That does not mean all sensitive data, with the potential to upset someone, will be redacted.

This is all bollocks really. The odd historic thing might have to be redacted if say you had been involved in group therapy and other patients were named. In modern records other patients should not be named. I have also seen historic notes that said 'patient wanted to know why consultant had changed but I didn't tell her he had killed himself ' !! Modern records should not contain this sort of thing. Hateful terminology was also used decades ago but that can't be helped now.
If 'vulnerable' people have capacity they should not be denied thier notes. Physical notes should be copied so no tampering. No one needs to sit with patients that is just bonkers. No one should be writing anything in notes that they cannot defend.

Oh for god's sake you're just determined to take offence. I couldn't care less if you think I'm ableist anyway. Your explanation makes no sense.

Does GDPR actually specifically say this, or is this another case of over enthusiastic interpretation?

We had that for a long time with 'health and safety law means we can't...' until the health and safety executive published posters literally showing up the myths that it was being blamed for.

Taking the example you've given, if a third party has 'given information' about somebody but isn't willing for it to be shared with the person it relates to then it should not be recorded in that person's file, IMO.

If you think it's all bollocks then why don't you put energy into lobbying your MP rather than just complaining? Nobody is denying anyone their notes, they are saying if you want them you need to follow the process and place a formal request.

I didn't say in modern records other PATIENTS info will feature, I said other people. When concerned family members report someone to their GP for not being safe to drive anymore, when someone phones to say they're concerned their family member might hurt someone or themselves, when they're concerned their family member is showing signs of dementia. All of these things will be recorded on their notes but legally should be redacted when providing the notes.