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.

I find it totally disgraceful that I cannot access all of the information written about my own body, my own health conditions. How could it harm me to know that? It's so insulting and patronising. Other countries allow it so I don't believe this 'oh it would harm you' rubbish. I'm an adult and the only person living in this body.

I can understand the frustration, as others have said as a HCP if I just hand over someone's notes I risk my job, but you can go through proper channels and request them.

I work in stroke rehab, all our notes are kept on computer systems which we access in the office. But, we work in patients' homes, and often need to check the details of what a colleagues has done. So we have created a home notes file for each patient, we document everything in the medical notes online but everyone has a paper file that we update when we visit and they are able to read these as not the full official medical notes, perhaps your maternity notes were something similar?

I had a paper book when I was pregnant that the midwives updated at appointments etc but I think they also updated online, I took the book into hospital and they did put in some details but also used the hospital systems, I could see the notes in my book but not the ones on the system (although as I work for the same trust I technically could, but as people have said would lose my job if I did!)

They might say no. I was not allowed to take a pic of a scan to show my partner I was doing ivf. It was a scan checking my follicles and we understood well due to being quite the rodeo veterans by that point. But she would not let me take a pic. Said it was her work despite being my ovaries. Shame. That round worked and dc1 has the equivalent pic as no1, dc2 pic begins at embryo transfer.

I was in 3 separate hospitals (over a solid period of 6 weeks, so one to another then the 3rd one), and I requested my records from all 3 hospitals. No fee for that. I got them back on CDs

Very true. All I can do is ask I suppose. I know the notes I had to send into the gp after my surgery was the exact same discharge notes I got because it was old school and written on a top sheet and the next sheet down was for the doctor.

Indeed, all you can do is ask. I was surprised as my partner had been with me in previous ivf rounds, but was barred that time as it was just opening up after covid. So only I was allowed in the room. It was the first time we had done it with him excluded from the whole process. I wanted to share it as it felt so much lonelier that round. I do not think all decisions are in patient best interests.

EVERYONE needs to check their files regularly IME.

I had mine after an assault on me went to court. The amount of incorrect information is shocking.

Not to mention the notes of three other patients with completely different details (including sex in one case) that showed up in my files.

I asked if they could be removed and incorrect details changed but was told no. Once it's in your record it's there for life.

It's nice to know what certain HC professionals actually think of you, too. I was a 'nuisance' patient for returning with the same problems. That problem turned out to be the neurological condition I'd been diagnosed with in my late teens but it never made it into my notes.

It was only after the assault went to court and the legal team insisted I get checked out at the other side's cost that they found out (for the second time) what I have. Now I'm finally getting the treatment that would have slowed progression decades ago.

Check your notes every 5 years.

I know it could have come from a couple of different surgeries, but not precisely.

Tbh we were all more making sure she stayed alive at that point. I could have asked at the daily rounds but we were so often in crisis mode that it slipped my mind. By that stage she'd had two craniotomies and about a dozen other procedures and meningitis.

So it doesn't really alter anything, it was more curiosity really. Thinking about it, it's probably more like 2-3 inches, but she's small.

I wasn't miffed about the mystery stitches, but that I wasn't allowed to read at what happened at the ditched operation. As it was an emergency no one really explained that bit, and then we moved on to the next crisis, but I thought the notes might clear up a few questions. I just wanted to know if they got as far as the incision or not 🤷‍♀️

If people could just demand notes off you where would it end ? Demanding their next of kins notes while on a ward ? It’s been the way for years you need to apply for access to them .

Yes a lot of these things like a clinic letter , mri report , picture of x Ray are discretionary on a case by case basis.

Could the back scar be a chest drain if very unwell??

That's absolutely mental. What gives medical professionals the right to decide on our behalf what will or won't be 'detrimental' to us? How incredibly patronizing.

I work in the hospital and imagine if someone wanted to look at their notes, they’d then be asking lots of questions about what does this mean and why was this written etc etc. can totally see why you weren’t allowed!

It has to go through proper channel s..I'm NHS if I shared patient notes to a patient without proper written request to pals I'd loss my job

I think the main issue is that there was nobody to explain what happened to you and what the plan was. It’s unacceptable really.

I think you can just call and request access then view it on NHS app. I can see all my prescriptions on there going righr back but can't access notes page.

Yeah I wasn't allowed dh with me when I went in to get my mmc confirmed as it was May 2020. But when I had to go to midwife appointments on my own from Sept 2020 to May 2021 I was allowed to record the heartbeat and scans I was given loads of pics.

You might be 50% there. Its drainage related, but of csf.

Its either:

(1) related to a csf lumbar drain (she had 3 sequentially) - I know the 3 x small scars are from that, but I'm not sure if it caused the bigger one (ie so they could access spine but then tunnel through so it pops out at the side)

(2) the aborted surgery to place a permanent lumbar shunt - theatre was called by the lab to stop as samples showed meningitis, and then she quickly became 'unwell' so they aborted the surgery. I didn't think they'd got as far as fully opening her up, but the scar made me wonder otherwise. The surgery wasn't needed in the end thankfully.

That was a 'fun' period of life. Poor kid.

You assume she'd be asking lots of questions. And even if she did, if they don't want to answer then 'I can't/am not allowed to answer that' is a perfectly allowable response. That's absolutely no reason not to allow it.

Do a subject access request. The have 28 days ( I think ) to respond.

I don’t think it’s reasonable to argue that patients shouldn’t see their records on the grounds that they might misunderstand things or they might ask questions.

https://ico.org.uk/for-the-public/your-right-to-get-copies-of-your-data/#:~:text=You%20have%20the%20right%20to,subject%20access%20request%20or%20SAR.

For notes about mental health, it absoluty can be detrimental to read your own notes.
I am not allowed to read mine, and I am fine with that.

Exactly, I just wanted to make sure that any post op instructions had actually been passed on to me. I wasn't going to ask lots of medical or technical questions. For example, the surgeon said I would be given painkillers and spare dressings by the nurses. An hour after the op, the anaesthetic was wearing off so I asked for some paracetamol and was told they couldn't give me anything because the consultant hadn't prescribed any painkillers. She said I could take my own paracetamol if I had some but she wasn't allowed to give me any so I just had to sit there in pain and wait til DH arrived to collect me. They didn't give me any dressings either until I specifically asked for them. I think the NHS as a concept is wonderful but in my experience you have to champion your own health and be quite assertive about following up or things are missed...like painkillers and dressings!

No one would be forcing you to read yours. But we are not all the same.