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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

To think the NHS is far too secretive about our health records?

105 replies

whyisthissodifficultffs · 19/09/2026 20:16

I’m trying to access my records as part of a complaint I’m considering making. I want to access them before making the complaint.

I have our trust’s hospital connected app (it’s called my chart). I have submitted a request through there.

Last night it bounced back saying I needed to provide certified ID, and a signed subject access request form.

Now, I understand that these are confidential records. However, I have verified my ID to sign up to the app. I’ve submitted my request through the app. Why do they make things so difficult?!

The entire thing has really annoyed me, to be honest. It’s my medical information and I feel like it’s being held hostage from me. I have a right to access this.

AIBU to think they need to start being more open?

OP posts:
Anyahyacinth · 19/09/2026 21:07

whyisthissodifficultffs · 19/09/2026 21:02

Again. Everything in my trust is now digital.

You'd need to blame political decisions imposed on the NHS for the variety of NHS data providers for community, acute and GP providers. Austerity years, dodgy contracts, localised commissioning and the rest.

It's digital in my trust...I was still sent imaging on CDs (I couldn't view) and paper copy records

sparklyblueberry2 · 19/09/2026 21:09

Legally the notes are the property of the NHS. Procedures in place are actually to protect you. I work in ED and the number of times I have had people call up trying to get information, pretending the patient is their relative, even the police call demanding I release information, journalists try it too….ive even had the family of the assailant try to get information about a victim of an attack.
the procedures in place are to protect you, surely all the security in place is a good thing? even healthcare workers have to go through this to access their own notes. Nothing is 100% secure online, no apps, even facial recognition (this can’t tell me and my sister apart and we aren’t even close in age).

mindutopia · 19/09/2026 21:11

What exactly is it you are trying to do? I use My Chart. I also work in digital health app development (though nothing to do with this one). It generally works really well compared to most apps. But I don’t quite understand what it is you are trying to access. I have cancer, so a lengthy hospital record and I don’t have any trouble accessing any of it. Certainly haven’t needed to submit a SAR for anything!

whyisthissodifficultffs · 19/09/2026 21:12

mindutopia · 19/09/2026 21:11

What exactly is it you are trying to do? I use My Chart. I also work in digital health app development (though nothing to do with this one). It generally works really well compared to most apps. But I don’t quite understand what it is you are trying to access. I have cancer, so a lengthy hospital record and I don’t have any trouble accessing any of it. Certainly haven’t needed to submit a SAR for anything!

I want to access a radiology report from a scan I had about two weeks ago. I’ve tried PALS, they’ve ignored my email, so I’ve submitted this request. I really can’t wait another four weeks for them to dick about delaying things.

OP posts:
TotHappy · 19/09/2026 21:14

It really pisses me off too.
when my infant dd was in hospital for her third stay in 2 months, I asked the nurse on her last day (when we were expecting/hoping she would be discharged) if they could show me the records of her stay.
he seemed surprised, went away and came back to say no, it wasn’t allowed. What the fuck! Who had a better right to know whatever was contained there!?
he offered to explain anything I was unsure of instead, but the point was I was so frazzled and sleep deprived and shell shocked that I couldn’t retain or process much aurally and just wanted to read and get everything straight in my head- the timeline, changing diagnoses etc. and of course he didn’t know anything anyway, having just come on shift that morning.

ladygindiva · 19/09/2026 21:15

As someone who has a history of SA and related abortions and STDs from my younger years I am glad medical records are so difficult to access. So I voted Yabu. Although I get it must be frustrating.

scoopsahoooy · 19/09/2026 21:17

whyisthissodifficultffs · 19/09/2026 20:38

Exactly!! I think things like reports and imaging should be made available asap. It’s literally our own data. If they’re fine to send letters to the app there’s no reason for them to hide this. I don’t want every little note. I just want to be able to reconcile what I was told with what’s actually happened - so I can decide whether I’d like to make a PALS complaint or whether I go for another opinion.

I can see all of my letters, referrals, notes, blood and test results etc in Patient Access - is this a thing you can sign up for? I've had access to it since my old GP in a different city but stuff from my currrent GP in a different area is all on there, including stuff going back to when I was a kid. Is this the kind of stuff you want or do you want specific medics' notes about you?

Anyahyacinth · 19/09/2026 21:18

https://www.bmj.com/content/392/bmj.r2362

My trust uses Patient Knows Best...no imaging reports are ever loaded there.

scoopsahoooy · 19/09/2026 21:19

Ah just seen you want a report. That kind of thing is available in Patient Access for me - like letters back from consultants to my GP, etc. So I'd maybe see if you can use your NHS number to sign up for that!

whyisthissodifficultffs · 19/09/2026 21:19

I’ve tried everything. MyChart, NHS app, patients know best, they patient access.

All I need is the pissing radiology report. And nobody is willing to give it to me.

OP posts:
mindutopia · 19/09/2026 21:19

whyisthissodifficultffs · 19/09/2026 20:47

Argh how? I’ve been trying for ages now. I can’t get anything beyond some blood tests I had 12 months ago!

My scan reports are on My Chart as it’s part of the hospital record. But letters and diagnoses, if that’s what you’re after, will likely be on your NHS app as they are part of primary care. I have literally everything I’ve ever been diagnosed with back to well past digital records on my NHS app and every letter sent from every consultant appointment to my GP. None of that would be on a patient facing hospital app though because it’s not how the system works. If I need consultant letters and scan reports that are too old to be on My Chart, I go via my consultants’ secretaries or the nurse specialists as they do most of the hospital admin. Otherwise, the recent scans are there for me to read. I think they are under tests.

One thing I would recommend though is killing them with kindness. No one is going to do you a favour if you’re coming at them like this. You need to get on people’s good sides. Make friends with the secretaries. Be cheerful and respectful. It gets things done, trust me.

kittenkipping · 19/09/2026 21:21

Yanbu OP. However I believe that it is purposely difficult to avoid the litigation the NHS would face if it were easy. They rely on people’s lack of time/ patience/ ability to wade through the administrative hoops they set to avoid exposure. I’ve had my chart snatched off me by nurses in hospital as “that’s confidential and not for you!!! You must not touch this!” - it’s literally the log of my health and charts my wellbeing and stats. If I understand it , even if I don’t, I should be able to read it. The SAR will include reams more than you need which again will serve to deter people who don’t have the time/ resilience / patience- it’s another hurdle. If they were to just give you the pertinent information your complaint would be easily proved/ disproved.

Catza · 19/09/2026 21:23

whyisthissodifficultffs · 19/09/2026 21:12

I want to access a radiology report from a scan I had about two weeks ago. I’ve tried PALS, they’ve ignored my email, so I’ve submitted this request. I really can’t wait another four weeks for them to dick about delaying things.

It may not take that long. The legislation says information has to be provided within 28 days. How soon you get it depends on how easy it is to procure and compile. I appreciate you are frustrated but nobody is "dicking around" and delaying anything. There are real people putting together your information and there may be dozens if not hundreds of patients waiting for the same.
I am not sure why you think this is some conspiracy that NHS is engaging in deliberately. There is a reasonable explanation for why it may take some time (but not necessarily full 28 days).

mindutopia · 19/09/2026 21:23

whyisthissodifficultffs · 19/09/2026 21:12

I want to access a radiology report from a scan I had about two weeks ago. I’ve tried PALS, they’ve ignored my email, so I’ve submitted this request. I really can’t wait another four weeks for them to dick about delaying things.

Is the report back? I have cancer so I have urgent CT and MRI scans every 3 months. They take about 3 weeks to come back to the consultant. The consultant needs to review them. They may need to discuss them in the MDT and then they get released to you. It’s too soon. I think you are spiralling here and not thinking clearly about how the system works. Everyone thinks their case is the most urgent one. But there will be very ill people who have to come before you. Those people get reports back in 24-48 hours. But for a normal person, I’d expect 3 weeks for the report to even land on their desk.

whyisthissodifficultffs · 19/09/2026 21:24

kittenkipping · 19/09/2026 21:21

Yanbu OP. However I believe that it is purposely difficult to avoid the litigation the NHS would face if it were easy. They rely on people’s lack of time/ patience/ ability to wade through the administrative hoops they set to avoid exposure. I’ve had my chart snatched off me by nurses in hospital as “that’s confidential and not for you!!! You must not touch this!” - it’s literally the log of my health and charts my wellbeing and stats. If I understand it , even if I don’t, I should be able to read it. The SAR will include reams more than you need which again will serve to deter people who don’t have the time/ resilience / patience- it’s another hurdle. If they were to just give you the pertinent information your complaint would be easily proved/ disproved.

Yes I’ve had this misfortune in my job of going through SAR requested notes of deceased people for claims. It’s insane the shit they include to try and dissuade someone from reading the information.

I shouldn’t have to go through all of this in order to access a radiology report. I shouldn’t have to request 27 years worth of notes for one thing!

OP posts:
LIZS · 19/09/2026 21:25

Who ordered the scan? Generally the report is returned to them.

whyisthissodifficultffs · 19/09/2026 21:25

mindutopia · 19/09/2026 21:23

Is the report back? I have cancer so I have urgent CT and MRI scans every 3 months. They take about 3 weeks to come back to the consultant. The consultant needs to review them. They may need to discuss them in the MDT and then they get released to you. It’s too soon. I think you are spiralling here and not thinking clearly about how the system works. Everyone thinks their case is the most urgent one. But there will be very ill people who have to come before you. Those people get reports back in 24-48 hours. But for a normal person, I’d expect 3 weeks for the report to even land on their desk.

The scan was in a&e. No consultant etc., it was back and reviewed within the hour. My discharge summary states I have “slurry” in my gallbladder. The doctor told me it was a stone.

I want to know which one it is, as if it’s gallstones I’ll just go private to get it out. I cannot get a copy of the report!

OP posts:
Studyunder · 19/09/2026 21:35

whyisthissodifficultffs · 19/09/2026 20:27

I also don’t think I should have to do a SAR to access information about my own health. That’s crazy to me. Things like my radiology reports and imaging should be available to me as a matter of course - it’s data about my own health! Why are they so restrictive in this? If they’re happy for me to receive letters to that app they should also be happy to put that sort of information on there.

You are the subject of the records but that doesn’t make you the owner m. These rules are in place to protect you.

Catza · 19/09/2026 21:36

kittenkipping · 19/09/2026 21:21

Yanbu OP. However I believe that it is purposely difficult to avoid the litigation the NHS would face if it were easy. They rely on people’s lack of time/ patience/ ability to wade through the administrative hoops they set to avoid exposure. I’ve had my chart snatched off me by nurses in hospital as “that’s confidential and not for you!!! You must not touch this!” - it’s literally the log of my health and charts my wellbeing and stats. If I understand it , even if I don’t, I should be able to read it. The SAR will include reams more than you need which again will serve to deter people who don’t have the time/ resilience / patience- it’s another hurdle. If they were to just give you the pertinent information your complaint would be easily proved/ disproved.

For the love of god!
The government passes the laws which outline every organisation's responsibilities in regars to data governance. Data protection act 2018 and data act 2025.
Then, the information commissioner's office outlines procedures for how data should be released. If you've never heard of them, you can look on their website page
https://ico.org.uk/for-organisations/uk-gdpr-guidance-and-resources/

This is all done before we even get to the NHS. Individual trusts then take the law and the guidance from ICO and create information governance policy. I don't know what's so "purposefully difficult" about signing a bit of paper and showing your ID. But if you suspect your trust is withholding information from you, contact ICO.

UK GDPR guidance and resources

https://ico.org.uk/for-organisations/uk-gdpr-guidance-and-resources

Lilyloolock · 19/09/2026 21:38

This is why the NHS is always damned if it does and damned if it doesn't. Like so much in so much of the public sector, efficiency isn't possible because of extra safeguards in place to prevent unlikely-but-possible bad stuff happening.

In this case the ease with which you should be able to access your own health records goes out the window because of laws to prevent the off chance of someone nicking them. Yesterday there was a thread on here about Benedict's Law, one of very many First Name's Laws that mean extra cost and worry for public sector bodies to try and reduce low risk to no risk. We have asked for all this stuff, and this is the annoying consequence.

TY78910 · 19/09/2026 21:40

whyisthissodifficultffs · 19/09/2026 20:29

If they don’t trust the processes for their app then it needs to be the case that nothing is available on there. Not some and not everything.

I think in general they make it impossible to access anything related to your health. That’s wrong. In 2026 it should be easier to access information to get a second opinion

I know DHs passcode to his phone. Which means I can access his passwords app. Does that make me entitled to access his medical records because he signed up for an app? This is why extra steps exist - so that people who want to steal your phone don’t have it too easy.

Portmore · 19/09/2026 21:44

whyisthissodifficultffs · 19/09/2026 20:27

I also don’t think I should have to do a SAR to access information about my own health. That’s crazy to me. Things like my radiology reports and imaging should be available to me as a matter of course - it’s data about my own health! Why are they so restrictive in this? If they’re happy for me to receive letters to that app they should also be happy to put that sort of information on there.

I've been on the receiving end of an abusive & coercively controlling individual who stalked me electronically eg accessing my apps.

Their processes have to be absolutely watertight to protect people.

Also think about data breaches eg M&S who lost customer details to a hacker. Instead of your shopping history that could be your confidential medical history & that could be used against you, made public etc

DiscoCherries · 19/09/2026 21:45

Call your GP, they can see it all. I had cancer and get passed around the post a lot but if I’m ever in need of a letter or results I just go via the GP.

LIZS · 19/09/2026 21:51

Have you spoken to your gp since? They would have received your discharge summary and can refer you back to the relevant clinic who would review your scan report with you and determine any action. The scan report alone won’t really help you decide. Are you still suffering symptoms?

HoppityBun · 19/09/2026 21:54

I can’t use the NHS app because I have not been able to set it up. I always fail at the verification stage. Luckily I can use My Chart and the GP website. I understand the requirement to be secure but it defeats me each time I try.

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