Maternity records GDPR Breech

LittleGungHo · 2021-10-13T15:03:46+00:00

AIBU to be cynical as to why my maternity records have gone missing and what can I do about it? I have a rubbish birth with my DS in Jan this year. My womb collapsed and I was rushed into surgery post birth. The ballon they fitted worked and was removed but they left the 'packing' inside me. I applied for my maternity notes last month and they should have been with me tomorrow but I was told yesterday 'we can't find them, the consultant does not have them, they may have been intercepted'. I was meant to have a consultant appointment tomorrow to have a birth debrief and to find out if I can safely have more children. This has now had to be postponed until they find the notes. Is this a GDPR breech? Have they 'lost' them on purpose as there is significant medical negligence? Help!

Theunamedcat · 13/10/2021 16:07

No idea but mine got lost years ago im down as having three children but my hospital notes say two my doctors are "aware" that I had a pregnancy and that's about it her birth is lost somewhere

MauveMavis · 13/10/2021 16:08

Medical notes unfortunately go missing all the time.

I can totally understand why in your circumstances (the whole thing sounds really upsetting) you might think this was deliberate but as a hospital consultant I say it is sadly just normal.

It's one of the big drivers to move to electronic notes - they get lost a heck of a lot less often and don't have to be moved from A-B for appts etc.

Original poster

LittleGungHo · 13/10/2021 16:11

@MauveMavis

Medical notes unfortunately go missing all the time.

I can totally understand why in your circumstances (the whole thing sounds really upsetting) you might think this was deliberate but as a hospital consultant I say it is sadly just normal.

It's one of the big drivers to move to electronic notes - they get lost a heck of a lot less often and don't have to be moved from A-B for appts etc.

This makes me feel better that it may not be personal.

I just hope they find them propping up a wonky desk or something.

There is a lot of trauma for my husband and I around my DS's birth and I was really hoping that the record would help 🙄.

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PlateSpinnerExtraordinaire · 13/10/2021 16:13

An operation/procedure note will be electronic so impossible to lose even if your hand held records have been.

Original poster

LittleGungHo · 13/10/2021 16:17

@PlateSpinnerExtraordinaire

An operation/procedure note will be electronic so impossible to lose even if your hand held records have been.

Great news. Brilliant thank you. I will try down that route.

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Original poster

LittleGungHo · 13/10/2021 16:18

I am from a defence background so I have no clue on what goes on in medical/NHS process.

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MakingM2 · 13/10/2021 16:25

I'd be tempted to ask if they have checked whether their legal department has them.

negomi90 · 13/10/2021 16:35

An operation/procedure note will be electronic so impossible to lose even if your hand held records have been.

absolutely not true.

It depends on your hospital and sometimes within the hospital on your consultant.
Different hospitals have different systems.
I've worked in hospitals with typed op notes for general surgery but written for ortho or obstetric.
I spent last week trying to decipher a surgeon's op note (which was definitely not electronic (regarding an operation that day).

Couchbettato · 13/10/2021 16:38

Not maternity notes, but I had a 4 day stay in ITU with Myo and peri carditis and no doctor on earth can find the notes for that admission!

Onairjunkie · 13/10/2021 16:39

I hope it’s not personal. My friend was left I n Labour for nearly 90 hours before she then nearly died from huge complications. The physical and mental health fall out for her was huge. Her notes were conveniently ‘lost’ too. Don’t stop pursuing it.

Original poster

LittleGungHo · 13/10/2021 16:44

@Onairjunkie

I hope it’s not personal. My friend was left I n Labour for nearly 90 hours before she then nearly died from huge complications. The physical and mental health fall out for her was huge. Her notes were conveniently ‘lost’ too. Don’t stop pursuing it.

At the moment I am in a positive place mentally but there is definitely trauma. This appointment was my next step and now feeling a bit lost.

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ancientgran · 13/10/2021 16:44

I hope they find them for you. My tale of lost records is police related rather than health, I worked in police admin and every year we had cadets on placement in various department. I was working with court files at the time so I would prepare Crown Court files, e.g. make sure all statements included, photos, charge sheet copies etc.

Well we had a big search as the files for next days court were missing. We eventually found them, the cadet had filed them under first names rather than surnames. About 100 files, did we have a panic until we found out what had happened. I wouldn't have liked to face the judge when he found out we had no file.

VillanellesOrangeCoat · 13/10/2021 17:03

They will be undertaking a massive search - we have to check every room, desk, cabinet, shelf, drawer etc etc when a set of medical notes go missing. It won’t be personal

Original poster

LittleGungHo · 13/10/2021 17:23

@VillanellesOrangeCoat

They will be undertaking a massive search - we have to check every room, desk, cabinet, shelf, drawer etc etc when a set of medical notes go missing. It won’t be personal

This fills me with hope. The lady I having been speaking to side not seem concerned in the slightest. The consultants PA was more encouraging but still seemed to be shrugging (it was a phone call but had that tone).

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1FootInTheRave · 13/10/2021 18:01

The usual reason behind this is that someone has them in an office and hasn't tracked them to that area.

Another issue is that historical paperwork may be filed in a past volume of notes that are stored off site. Archived if you will. Still accessible but not as easy as the ones (most up to date volume) kept in your local trust.

Hope this makes sense.

wigglerose · 13/10/2021 18:05

If the personal data is no longer available (i.e. they gone and bloody lost the notes which are chock full of your personal data), then it's very likely a breach of the security principle of GDPR.

I found data protection in hospitals to be woeful when using perinatal services. Every scan I attended I could easily see the personal data of the previous patient on the screen. Files were left on reception desks open where anyone could see (or steal) them etc etc.

Dixiechickonhols · 13/10/2021 18:11

I found my birth debrief with specialist midwife very helpful after traumatic delivery so I hope you can still have that.
My scan records ‘went missing’ - I know they were destroyed deliberately but obviously couldn’t prove it. My dc was born with a missing limb undetected on scans (well it’s there according to typed record note of scan but obviously wasn’t!)

MilduraS · 13/10/2021 18:32

I used to work in clinical negligence. I've been supplied with detailed notes that proved fatal and obvious cases of negligence. I've also had more minor cases from the same hospitals where the notes have been missing. Based on my experience, I've never suspected notes had been deliberately lost. If they were willing to "lose" them, it would have been better to lose notes for the £1m+ claims rather than the £20k claim.

I did have a few cases where lost notes were found months (in one case 3 years) after they were requested and they were promptly disclosed. It was usually in completely the wrong place in a huge storeroom or left in an office or cabinet that's no longer used. For the 3 year case they openly admitted they'd been found behind the radiator in the consultant's office after he'd retired.

Original poster

LittleGungHo · 13/10/2021 18:33

@Dixiechickonhols

I found my birth debrief with specialist midwife very helpful after traumatic delivery so I hope you can still have that. My scan records ‘went missing’ - I know they were destroyed deliberately but obviously couldn’t prove it. My dc was born with a missing limb undetected on scans (well it’s there according to typed record note of scan but obviously wasn’t!)

Goodness me that sounds like a lot of failures and big trauma. They are going to call me next week (when they have hopefully found the records) to reschedule the debrief

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yippyyippy · 13/10/2021 18:35

I took photos on my phone of all my birth notes In hospital as I’ve heard so many accounts of other people’s ‘going missing’

Original poster

LittleGungHo · 13/10/2021 18:38

@MilduraS

I used to work in clinical negligence. I've been supplied with detailed notes that proved fatal and obvious cases of negligence. I've also had more minor cases from the same hospitals where the notes have been missing. Based on my experience, I've never suspected notes had been deliberately lost. If they were willing to "lose" them, it would have been better to lose notes for the £1m+ claims rather than the £20k claim.

I did have a few cases where lost notes were found months (in one case 3 years) after they were requested and they were promptly disclosed. It was usually in completely the wrong place in a huge storeroom or left in an office or cabinet that's no longer used. For the 3 year case they openly admitted they'd been found behind the radiator in the consultant's office after he'd retired.

Thank you for your logical head wobble. You are right there are 'better' notes to lose than mine. My issue is that though it is routine and process to the hospital to me it personally and impacts my future 😞

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BoredZelda · 13/10/2021 18:39

I asked for a copy of a report for my daughter but was told I couldn’t have it due to data protection, I’d have to fill in a form to get it. I was at the assessment and saw them do it and talked to them about it but I wasn’t allowed to see it written down. Then I asked who it had been sent to and they couldn’t tell me because the report hadn’t stated who it needed to go to, just the department. It had been posted but they had no record of it being received. The person who should have received it never did and couldn’t request a copy because one had already been sent. I questioned how they were protecting my daughters data by not giving the report to me, but by issuing it to a random department with no name on it. It is shocking how poor hospital records can be dealt with.

Heronatemygoldfish · 13/10/2021 18:40

Information governance person here.

There are three types of breach: confidentiality (where info is lost, stolen, goes where it's not supposed to or is seen by unauthorised persons) availability (when it's not there when needed) and integrity (where the data is wrong).

Yours is a classic availability breach: the NHS is obliged to report these to the NHS Digital Data Security and Protection Toolkit. This is what the guidance says:

"Availability breach example
Unauthorised or accidental loss of access to, or destruction of, personal data - In the context of a hospital, if critical medical data about patients are unavailable, even temporarily, this could present a risk to individuals’ rights and freedoms; for example, operations may be cancelled. This is to be classified as an availability breach."

onthinice · 13/10/2021 18:41

Not sure how helpful they'll be, but the HV service may hold electronic copies of things like post natal summary. Ask them.

namechanging564 · 13/10/2021 18:44

Yes it's a personal data breach, whether it's been accidentally deleted or lost somewhere, it's a data loss. Complain, state the legislation and see what they come back with, they should take it seriously because if it was the only copy of your notes that's potentially quite dangerous to you if there's no other record of your medical history at that time which impacts your rights and freedoms as an individual and thus triggers the threshold to be self-report to the ICO.

(I don't know enough about medical records to know if there's only one copy but that's how I'd interpret it if you, nor anyone else, could account for your pregnancy and birth, if there's a duplicate it won't be as serious although depends what their investigation found in terms of where they could be)