Missing medical records

[ifIwerenotanandroid]

Does anyone else have missing medical records (NHS, UK)?

I once made a request to check something & found about 20 years are completely missing, from when I lived in other areas. Despite putting in official requests to my current area & everywhere I lived previously, my records couldn't be found.

One explanation I was given was that when doctors introduced computers into GP surgeries (?1980s), if the practice couldn't contact a patient their records were thrown away - although I believe records could/can be sent to a central facility. I've no idea why they wouldn't have been sent there.

I've also heard of a news report about lots of medical records being found in a skip, at about the same time.

Does anyone know about any of this? I'm guessing it's far too late now but maybe a miracle happened & mine are lodged in a dusty corner somewhere. It seems to me an absolute scandal that medical records could be treated in this way..

Good question OP. I'm in a similar situation.

Mine don't start until I was 15; a third of my life is missing, including some important stuff from my childhood. Also only one of my three pregnancies is there in my record.

The NHS has a data recovery plan and records are routinely backed up to tape or similar. Unsure how this works with paper records though. Also unsure how this works when files are "lost" when there is a serious complaint / negligence / patient injury or death.

the legal requirements for health record retention in the UK are.

8 Years for personal records
20 Years after last treatment for mental health records
25 years for obstetric records.

medicaldefensesociety.com/2019/12/12/keeping-medical-records/

@NaToth

Good question OP. I'm in a similar situation.

Mine don't start until I was 15; a third of my life is missing, including some important stuff from my childhood. Also only one of my three pregnancies is there in my record.

Have you tried to get them? I think I contacted the area Health Authority in each case & they looked for the records.

[quote FixTheBone]the legal requirements for health record retention in the UK are.

8 Years for personal records
20 Years after last treatment for mental health records
25 years for obstetric records.

medicaldefensesociety.com/2019/12/12/keeping-medical-records/[/quote]
Thanks, but I don't quite understand: I can't find those figures via the link or the NHS w/s linked from it.

Also, it says patient records have to be kept for 10 years after their death, which kind of implies that everything's there, unless it means notes about the death have to be kept for 10 years.

I really find it ironic that the NHS's attitude to records varies so much over time:-

Old school paper records:

• Patient records are sacred & patients are never allowed to see them.

Introducing computers:

• Patient records no longer matter, & can be discarded & destroyed at will.

Change in the law

• Patients can now see their records.

Computer centralisation

• Strict rules on which NHS employees can access records.
• Using records for research & profit (where we are now & in the future, possibly.

I grew up in the 'records are sacred' era, & honestly believed that your NHS record followed you from birth to death & was vital.

Sometimes I get asked what childhood diseases I had & I throw my hands in the air & say, "I have no idea because my medical records have been destroyed." When I was younger they would say, "Well, isn't there anyone in the family you can ask?," & as I'd gone NC, no there wasn't. In fact, I'm a perfect storm of bad coincidences, because NC means I don't know what my relatives are now dying of, & there was a family secret which meant that I used to give the medical histories of people who I now know aren't my blood relatives, while not mentioning ones who are my blood relatives. When I tried to find out my real grandmother's medical history because I thought I'd heard that she had a disease with which I'd just been diagnosed, my request was rejected on the grounds that I wasn't her next of kin.

So basically, when I turn up for medical things, I'm just a lone individual with incomplete records & no family history. This is not how it's meant to be.

Hi OP. I used to work in Medical Records (different NHS Trusts have their own Medical Records department.)

You'll find that some of your records may have been disposed of having exceeded the retention period.

See https://www.nhsx.nhs.uk/media/documents/NHSXRecordssManagementCodeeofPracticee20203.pdf Appendix II, starting on page 50.

For example, children's records are reviewed when they reach 25 (or 26) years old and are destroyed if no longer required.

I don't have the messy family history that you have, but I found out last year that a chronic illness I was diagnosed with as a child was not on my medical record.

This means I have not been having the correct treatment for flare ups, as they have been misdiagnosed as asthma.
I have since got my hospital records from when I was treated as a child, which include the diagnosis. But I am still having to jump through hoops, including getting a consultant referral, to get it reinstated on my GP record and get a treatment plan.

Sorry to hear about this, Fairy, & good luck getting the right treatment.

So a subset of your records was still at the hospital? How did you get hold of them?

mummymummy Thanks. Mine were 0-22 & I think I was asking about them at about 35yo.

If your previous surgeries are like the one I work in your original file could be mis sorted. If the file isn't where it is supposed to be and who has time to look through thousands of files, then a temporary file is made up and sent to your new surgery. The original may turn up but then you have to rely on the admin staff to see if the patient is still registered before filing it in the correct place.

Troy When I moved to this HA, the new GP's receptionist was massively worried that I was simply trying to switch GPs within the same HA, & when she realised I wasn't, I don't remember her asking me where I'd lived before or anything like that. I wouldn't have known my NHS number. So I don't know how they would've got hold of my records or how the HA which had them (I'd just been at Uni & also a service dependent, so no idea where they were) would know where to send them.

There is a registration form you fill in which you complete with personal info, name, dob, current address, previous GP address, address when with previous GP, previous surname and you also sign the form. The completed form, once the info is put on computer is sent off to the Registration department at that Health Board and they are the ones that liaise with the previous Health Board's Registration Department to get your files sent to your new GP surgery. I'm in Wales and still waiting for the files of patients who registered in 2018 to be sent from NHS England.

You are entitled to change surgeries in the same Health Board, don't know why the Receptionist would be worried about that. We have people who want to register with us when their own GP is a 5 minute walk away from ours and they live in a street in the middle of both surgeries.

@ifIwerenotanandroid hospitals hold their own records, and usually only send discharge summaries to GP surgeries.
Some information here about how to get your hospital records in England.
Or if you know which hospitals/ hospital trusts you were treated at, you can go direct to their websites and search for 'Access to health records'.

It took a couple of weeks and a couple of phone conversations with the records manager confirming details and I got a fat envelope of my case notes from 40+ years ago.

@mummymummymummummum apologies for gatecrashing thread but what safeguards are there when records deliberately disappear during complaint investigations? What backups are there?

@ifIwerenotanandroid, I only know about the gaps 8n my records because I had to obtain them some years ago.

@channeltwo there was a missing record just once during my time there. It was a real pain for all involved! I can't imagine that they were misplaced deliberately as it caused so many more issues than what they would have contained. They were reconstructed, not sure how. The Trust I worked for only had paper records so can't comment on electronic records.

[quote channeltwo]@mummymummymummummum apologies for gatecrashing thread but what safeguards are there when records deliberately disappear during complaint investigations? What backups are there?[/quote]
Generally there are no backups for paper records unless the trust has a process for archiving them onto microfilm, or are in the process of digitising them.

This actually creates more problems for the trust if a patient complains, and the records are not available. If it came to one persons word against another, I'd personally trust a patient's recollection of their one healthcare event, than the medics recollection of one patient amongst potentially hundreds or thousands.