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 had a nosey through my file when I was having DD2 (it was left in my room on the labour ward while I was in the boring unsuccessful early stages of an induction - no one said I wasn't supposed to look at it!)

Thanks to this thread, I now feel slightly guilty.

But some people do need protecting from being panicked by terms they don't understand. Rules don't only revolve around your needs and your level of understanding. There are many people out there who won't know what words mean, or misunderstand their implications.

I have access to my notes. I read something in them that I really wished I hadn't. The doctors were right not to tell me about their suspicions at the time, and to protect me from stress and worry, as this thing might not happen. But to read that I'm at risk of it has left me incredibly anxious about my future.

If you're determined to have access to your medical record, make sure you're prepared for what you might read.

Wow. So nurse gave you the standard sheet of information about how to look after your wound but because you felt super to her (only good for making tea) you just disregarded it. Can you just clarify: did they actually discharge you or did you discharge yourself?

What did I write that makes you say this? My post literally says 'nothing major'. But, I care about my health so want to be well informed.

If it’s deemed that it could be detrimental to you to read certain things they will blanked out.

Whaaat?! Really?!

I didn't disregard the information - the sheet was different to what the consultant had told me. I wanted to check my notes to seek clarification. When she noticed I had got changed out of the hospital gown and into my clothes she said I could go home because I was moving fine and there were no doctors available to do my discharge for the next 2 hours. I'm assuming this means they discharged me.

See my post a bit further up. I wish a single sentence had been redacted before I read my notes.

Yeah someone else told me. I'll look into it tomorrow. Thanks for replying though.

YANBU. I’ve had several surgeries with a very vague surgeon and finding out what happened during the surgeries is almost impossible. Surgeon came to see me just as I was being revived and said ‘it went well’ then wandered off. By the time I was awake enough to ask proper questions he was gone home.

So you call the hospital. You’re told to make a written request so you do. Then you’re told it wasn’t the right type of written request etc etc

Eventually you give up. The only time I refused to give up, after 9 months the NHS finally agreed to give me “all the notes of my surgery” and then sent me a one page letter on which the doctor had scribbled “Did laparoscopy.” Two words. Nothing about the growths he removed and if they were benign or about the haemorrhage I had while unconscious.

DS (22) applied for his medical records a month ago about a serious and life threatening accident he had when he was 5. The X Rays came on a cd in about 10 days and the admissions, surgeons notes, surgery record, aftercare, ward notes, physio notes, arrived yesterday in paper form. They included everything, including very graphic photographs of the injury. Nothing was redacted even though the photos and descriptions were absolutely shocking.

The request form was very specific and he had to list everything he actually wanted to see individually.

When I've had surgery in a private hospital, my notes were left in my room. Once I came back from theatre, I was able to read what I wanted to know, what drugs I had been given, what happened in theatre & see pictures from my previous keyhole operations.

It makes very little sense, but they are the information governance rules in the UK.
I strongly feel they should be changed.
One of my colleagues got a stern email for searching for themselves to find out their NHS number.

The reason you can’t see your notes on request is because for some people, some entries are redacted. Everyone accepts there are some instances where that is necessary an appropriate.

But you can’t divide people into two groups, those with data that should be redacted (and who don’t get to see their notes on demand) and those without (who do.) if you did that, it would be obvious for whom some entries were being held back. And anyway, how would the nurse on the ward know into which category a particular patient fitted? They have neither the time nor expertise to make that judgement.

SO - everyone has to use the same procedure to access their records. That way there’s no distinctions.

I work in the nhs and frequently deal with subject access requests. The problem is no one ever remembers what's in someone's full notes

I agree that 85% of people could have their notes straight up without an issue

Theres a percentage that could have all of their notes but would need it explained eg.cofusing terminology, or rationale behind the recording

Theres a percentage that need these redacting eg. Conversations about safe guarding, third party info or harmful info

Now I work in mental health the percentage of people who would find it incredibly difficult is higher so people should be sat with them

The problem is no one has any idea where you fall on this spectrum until we have actually spent time reading what's in your notes!

In this case for example, it's possible that a surgeon has documented concerns about domestic violence or your gp summary of you has an alert about possible your mums drinking in pregnancy that's sent through on their previous diagnosis sheet that is included in referral. It's unlikely but until I read them I won't know.

The subject access request allows services time to review what they send, and time to weigh up the possible harm. It can take hours or even days with patients who have extensive notes to go through notes ive written, colleges have written, that we've been sent from other services, that we've been sent from family's etc.

The idea is to have time to look at it and weigh it up, rather than give you something on the presumption it's fine without knowing what's in it

I know what I write, and in our service 99% of letters to gp, discharge summaries etc are written with the patient cc'd in and designed to be read by the patient

Yanbu. My mum had surgery this morning and met with her consultant prior to discharge. She had been quickly shown a photo of what they removed earlier and asked to see it again before leaving - was told no
I'm not sure why you aren't allowed to read your own file. Makes no sense to me

But she had a really great dr who understood wanting to see again and loudly said 'however, if I just had to leave the room for a few minutes and accidentally leave the file on my desk how am I to know you are looking....'
so she got another look

Yes you're right op you do get to see them because I was left with all my notes on the Badger App for about 6mo until it needed updated. It had the info of all MW visits during my labour and 7 day stay along with retained placenta and emergency surgery and my ds file with test results and jaundice info etc.

@JusthereforXmas I can't quite your post on the app but I am so so sorry that happened to you. That's truly heartbreaking xx

You’re not understanding what I mean! I mean in that situation, if everyone as given their notes to sit and look through they’d be saying ‘oh what’s this and what’s that?’ And I doubt the drs or nurses would have time to explain! I work in the hospital and even when we send patients copies of their letters, we get numerous calls asking to explain the medical terminology.

yes, i know what the law says. I'm not an infant.

I want to know why the law is like that.
Up to your post i saw one vaguely applicable reason. Which i would possibly dispute, but there it is.

Just because "it's the law" doesn't, by a very long shot in some cases, make it good law.
(and lots of people say "no because GDPR" in cases where GDPR doesn't apply, so i prefer to check that it is an actual rule/law rather than something someone has got the wrong end of the stick of)

Try not to be so quick off the patronising mark.

and now having read to the end of the thread, thanks for the non-patronising and factual replies. That makes sense and i see why notes have to be requested.

there's a 2nd issue here though. And it is the actual issue OP had i think, and that is that she has received conflicting information and wants to clarify.

That's happened to me in the past, sometimes for reasons I've had to have a follow-up treatment that isn't in the regular timeframe, but much earlier. So doc says "tell recep to make follow up appointment within x time-frame" but recep know better and argue that you have to have it in y time-frame because that's usual and no you can't bother the doctor if you didn't listen first time etc. And then have only given a later appointment. Which in my case led to them getting a reprimand from the doc, and further treatment that wouldn't have been necessary.

Or when i was induced the OB/GYN told me to do X but the nursing staff on the labour ward said "nope, that's not what we think" and did Y which led to some difficulties that weren't unsurmountable but were bloody ridiculously uncomfortable and unnecessary.

So i do think that there needs to be clearer, better communication at clinics etc.

Just to be clear, it's probably not a legal requirement, but a trust policy.

I try to follow it so I don't get sacked. Everything else is fundamentally irrelevant beyond that.

As it happens, ive changed by reply to these requests to include a disclaimer that I haven't screened for things that may cause distress since I have no idea what is likely to cause distress. These days a micoragression such as misgendering a patient probably qualifies...

I thought everyone had a nosy at their notes when they are in hospital? There they are, hanging around your bed, why wouldnt you?

See my post a bit further up. I wish a single sentence had been redacted before I read my notes

Sure but not everyone would feel like that. Is this legal? Do they have the right to withhold information like this?! And who are they to decide what might be harmful for you to know? My mind is blown!