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.

Yes it says data cab be redacted if a health professional has deemed that the "serious harm test" has been met.
From the ICO website which I linked to earlier:
"Is health data exempt if disclosure could cause serious harm?Yes. You are exempt from complying with a SAR for health data to the extent that complying with the right of access would be likely to cause serious harm to the physical or mental health of any individual. This is known as the ‘serious harm test’ for health data.
You can only rely on this exemption to withhold health data if:

• you are a health professional; or
• within the last six months you have obtained an opinion from the appropriate health professional that the serious harm test for health data is met. Even if you have done this, you still cannot rely on the exemption if it would be reasonable in all the circumstances to re-consult the appropriate health professional.

This means that if you are not a health professional, you cannot rely on this exemption and refuse to provide the health data in response to a SAR, unless you have obtained an opinion that the serious harm test for health data is met. Bear in mind that you may also need to obtain an opinion even if you do not intend to rely on this exemption (see What are the restrictions on disclosing health data?). The appropriate health professional is the health professional most recently responsible for the diagnosis, care or treatment of the individual. You can appoint a health professional with the necessary experience and expertise, if the most recent health professional no longer practices. If you think this exemption might apply to a SAR you have received, see paragraph 2(1) of Schedule 3, Part 2 of the DPA 2018 for full details of who is considered the appropriate health professional."

I’ve never been given discharge notes after surgery. It’s odd, because one clinic sends me letters following the appointment summarising it and the outcome, and says “due to the trust’s policy of copying in patients”, but another clinic, resulting in many appointments, scans and multiple operations, at the same hospital gives me nothing at all.

Thank you, but that wasn't what I asked. I may not have been clear in fairness. We have been told that it is a breach of GDPR to let a patient see their notes on a ward. What you have said only applies to SAR.

Does the GDPR specifically prohibit sometime being shown their notes at the time?

Procedure may be too go through a SAR but I'm interested in whether to so is specifically required, to the extent that letting someone look would break the law (which had been suggested) rather than just crash hospital policy.

If it is specifically prohibited, then how do hospitals (which have been mentioned) that do allow it, manage to get away with it?

The general reasoning from ICO about GDPR with medical records, although there are exemptions and special rules for special data is this:

Information about any patient other than the subject of the disclosure
Any information which is likely to cause harm to the patient or anybody else

The GMC guidance is around 90 pages though so you'd see it's not a simple thing, hence the due diligence required with a formal process.

The thing is I can see that reading notes will be harmful to some patients. Obviously this is true. I work in forensics on I locked ward. Of course the notes do not make pleasant reading. But if those people have capacity they should still be allowed to have their notes. We shouldn't be writing in notes things that may put others at risk. But even if we can't avoid it, it is still not an excuse to make every thing difficult for all patients. A lot of work is going into having patients holding their own notes and it will be the way forward. Everything in the NHS just takes so bloody long though as we are so risk adverse.

Because they're not 'your notes'

They're the medic team's notes, about a patient. Same rules apply as any other information in any other organisation...

If you walked into your bank or insurence company and aske, would you expect them just to hand everything over immediately?

I get a request a week for notes, I have to go through every page and remove or redact anything that could breach other people's confidentiality, or be psychologically harmful... There might be things in there that need explaining, they may have found something like a suspected cancer and still be gathering more results or opinions before discussing. That's why there can't just be carte blanche open access.

The NHS doesn't dictate the law 🙄

😂😂😂😂 safeguarding us from our medical notes?? That’s the silliest thing I’ve heard for a while.
Full access to one’s records should be a given.
Another example of NHS bureaucracy that is wasting tax payers money on paperwork.

And no, not everyone is stupid. With the age of the internet, most of us are clued up on medical terminologies etc . In fact I’ve heard lots of first hand experiences where patients managed to self diagnose using google, to the point that one diagnosed their own rare disease that their own GP failed to diagnose and refer for. Give people credit.
If you have no interest in medicine, it doesn’t mean that everyone else thinks and feels the same way as you.

I don't believe it's against the law to allow someone to see them in person, but it doesn't happen 99.9% of the time because it can be a disaster waiting to happen. They are entitled to say no and require SAR instead. GDPR sets out the legal position when requesting formally. The BMA rules are here, and it's because of these rules that a formal SAR is required most of the time:

4.7 Must data controllers permit patients to inspect original records
if they do not request copies of the data?
The GDPR does not expressly require a data controller to permit a patient access to their data by
inspecting original records where no copy is requested. However, depending on the circumstances a data
controller may take the view that it should in any event permit inspection of the original records. Patients
sometimes become distressed when reading their records. It is therefore advisable for a member of staff
to be present with them to provide support, as well as to explain any clinical terms (see paragraph 4.10). It
is also important for staff to be present to ensure that records are not altered.

I am not stupid, but I am not allowed full access to mine. Most of my notes are about my mental health, and it has been deemed harmful for me to read them.
For me, it literally is a safeguarding thing.

I'm not giving my opinion though, unlike you. I'm explaining why the rules are as they are. If you don't like it, lobby your MP to change it.

Ah jolly good goady thread OP. The NHS bashers are out in force tonight.

The thing is, it can be critically important.

Someone with a severe MH relapse may be living at home. Parents are terrified and desperately seeking help. But begging that their info is treated confidentially. Various services are involved: the crisis team, the regular community team, the housing association, police etc. Family may contact all these agencies and it needs to be documented centrally so that all parties can see the notes and assess risk and make plans asap.

When things go wrong it’s usually due to poor communication. Third party info can be vital in these cases. But it may cause huge issues if the patient sees the comments.

These cases crop up reasonably often in mental health and we need to protect people.

The Dr's insist there is no record of me having my first baby because they lost my notes the consultant had to write it in on my file how many pregnancies I had when the other doctors saw the note they called him to verify this didn't ask me i was just sat in the chair infront of him he called my consultant

By ‘protect people’ I mean the third parties. I don’t really think patients need protecting from notes written about them. I have never stopped any patients reading my comments. But I am very careful and sensitive with my wording.

My last post on this because it's late and I'm going to bed, but hopefully this reiterates my previous points about why hospitals require you to apply formally for your records.

An 11 year old girl goes to the school nurse and discloses that her mum hits her regularly. This information of course is passed on to other services, her GP, social services etc, in order to help. However this girl's mum is entitled to request her daughter's medical records as she has parental responsibility and the daughter is under 12, which is the age usually considered old enough that she could prevent access by others.

Do you think there's a risk to further harm to the patient if the full notes are disclosed to the patient's mum, if she reads that her daughter has told her GP she's being abused? Because I do. Legally the mum can request the records, but it's in the best interests of the patient that the notes are redacted.

The nurse and hospital were quite right - that is the system, it has been like that for years.

Some helpful person above posted that they are entitled to redact notes on the basis that some data 'would be likely to cause serious harm to the physical or mental health of any individual'. No one but the medical profession would have demanded that exemption when the laws were being drafted.

What I would expect from a bank is that they would not be entitled to withhold data from me, that I would otherwise be entitled to see, on the basis that it could cause serious harm to my mental health. Breaching other people's confidentiality is a completely separate issue and I agree that's a very good reason why notes should be redacted if they include such information. Something that could result in serious harm to another person? Also fine.

Something you've decided could be psychologically harmful to me? No, you shouldn't get to decide that on my behalf. And if the law entitles you to do it then the law is wrong and needs to be changed.

The way that the OP wrote you would think she had open heart surgery or a liver transplant when in fact she probably had a mole removed or whatever 🙄

Same as access to notes- a subject access request- ask for your X-rays/ scans/ reports as well as or instead of copies of paper notes. Xrays/ scans usually come on a Dvd/ CD

https://bjgp.org/content/73/726/e67

interesting read in relation to outcomes of accessing your records

I have said it earlier upthread, but it’s not about protecting you from reading things you may not understand.

It’s about protecting the notes as a written record of the procedure so that if anything were later to go wrong, the record of what was done has a chain of custody.

This protects us as staff, because a disgruntled patient can’t, for example, tamper with a report I wrote to make it look like there was wrongdoing.

This protects you as the patient, because if we did do something wrong, we can’t then say “the patient has changed the notes, this isn’t what happened”, because you haven’t had undocumented access to them.

As staff, we don’t have free access to the notes either. Notes are tracked meticulously, so if my colleague in the next office and I both need to use Patient A’s notes, I can’t just look at them at their desk or take them to my office next door, they have to be tracked to me on the system.

When physical notes aren’t in use, they go to the records library and again, we have to make a request for them in much the same way you would.

Blimey OP you are better than me, I always try to see my notes when Im in hospital. (Usually wait for nurse to disappear ha ha)

I completely agree. I have become very concerned about my records and believe they have been confused or combined with another patient.

I am no longer allowed tests for what was an ongoing condition, because apparently I have never had the condition. I have a serious allergy recorded, which I don’t actually have. Several other discrepancies too.

I have requested my record, but am seemingly not allowed a copy. The GP says I can come in and ask questions, but not see anything. Even when I phone up to get blood test results they won’t give me the actual results, just “Dr says everything is fine” or “Dr has issued a prescription”.

And no, I don’t have any mental health issues. None at all, let alone something that might explain them restricting access to this extent. The only thing I can assume is that my notes have been confused with someone who DOES have a condition that means the GP feels they need to be protected, and that’s pretty scary.

I am changing GP to see if I can get to the bottom of it.