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Missing NHS records

9 replies

Lilylolamillie · 26/01/2024 18:25

I’m hoping someone can help with missing medical records. Apologies for the long post.

I’ve had issues with my shoulder / neck / hip since 2007. I had shoulder surgery in 2008 and the problem worsened and the following year I was diagnosed with CRPS and hyper mobile ED in addition to bursitis in my shoulder and hip.

Since then I’ve had additional diagnosis of ulna nerve neuropathy at the axilla, damage to the brachial plexus and bilateral carpal tunnel syndrome.

I’ve had steroid injections, nerve blocks, radio frequency ablation, nerve condition tests plus a lot of physio and some acupuncture. I’ve tried a cocktail of drugs including co-codomal, tramadol, morphine patches, lidocaine patches, amytriptilne, duloxetane, pregabalin, gabapentin, zopiclone and oxycodone. One specialist suggested I need tapentadol if symptoms weren’t controlled but this is no longer on my record.

I moved in Dec’22 and had to change practice and have now found out they have no copy of any records before Dec’22. I’m 50 so the first 49 years of my life are missing!!

I really need copies of the records including specialist reports. I’ve recently been referred to a pain management clinic & they insist I have a 9 month history of pain rather than 17 years. I’ve explained my history as best I can but they disagree with some of what I’ve said despite the diagnosis being made following MRI scans and being made by rheumatologists, neurologists and pain management specialists. The issue is I can’t prove anything and the new GP says I have a 9 month history.

They want me to have physio but I’ve explained I had this before but it was stopped. The physio had concerns it was making things worse and the specialist agreed and stopped it. This is due to CRPS which is also why any more invasive procedures will be decided upon very carefully due to risk of making the condition worse. The pain clinic physio says this treatment is my only option for support.

Im currently taking co-codomal and pregabalin which isn’t controlling the pain and they suggested taking tramadol for a while to get things under control. While I took this in the past, I had a reaction to it, and my old GP took me off it immediately saying they’d mark my record as having an allergy. This is obviously not available to any doctor now as the records are missing.

In addition to this I had severe kidney infections several years ago which is not recorded. The GP had said any more issues and I’d need to see a specialist. I also had a few minor illnesses none of which show.

Interestingly, what is on my record is a booking for a follow up with an oncologist despite me not having cancer or any symptoms of cancer / investigations into cancer. I was called about this and they insisted it was for me and a follow up after completing treatment. Once I’d explained I’ve never had cancer treatment they said it would be removed but it’s still there months later. This could affect any critical illness or travel claim if I was unlucky enough to have this diagnosis in the future.

In the immediate future, I’ve asked to see my employers OH department as I’m struggling at work due to the pain. I’m meeting them early next month but I know they’ll ask my GP for my medical history. Which of course is incomplete.

I’ll call my GP practice about this on Monday but has anyone experience of this? Did they find your notes? If so how long did it take? If not then what on earth do I do?

OP posts:
RandomMess · 26/01/2024 18:30

Your more recent notes should be electronic and they need to request to do the transfer again.

I had the same thing when I moved surgeries.

Speak to the Practice Managers and ask what steps they are taking to find them - both the older paper notes and more recent electronic ones.

Goawaytina · 26/01/2024 18:33

What a nightmare! Do you have an online account that you use for the Dr, can you see any of your history there?

Hall84 · 26/01/2024 18:33

Sometimes your old gp hasn't passed the notes on. So the new practice just needs to ask for them from the old practice. GPs made records electronic in early 2000s so you should be able to go back that far at least.
I deal with records a lot and I've only ever known of 1 record of an operation be actually lost but lots of records missing that turn up

Alphabet1spaghetti2 · 26/01/2024 18:39

Double check that they have transferred and updated the right patients records. Dh has been declared dead by one of our previous dr surgeries - correct name but wrong date of birth and completely different medical history. That was a very interesting conversation had with a very embarrassed dr and practice manager.
many own records state I’m allergic to an antidepressant- I’m not and never have been, the vomiting was caused by being (documented as ended in miscarriage and surgery) pregnant - not an allergy. But no one will actually correct my records as I “am not a qualified doctor and must be mistaken”.

Good luck in getting it corrected.

LIZS · 26/01/2024 18:52

If you had assessment and treatment in hospital you can apply for your records from there, under a DSAR.

Lilylolamillie · 26/01/2024 18:58

Thanks everyone for your replies. I’ll give them a call Monday and hopefully my old practice can transfer the records across. Not too bothered if records pre 2000 are lost as I rarely saw the Dr then and certainly not for more than minor illnesses.

Hoping it can be done pretty quickly before I have follow up with the pain management programme. They’ve said I’ll be discharged if I don’t accept their recommended treatment so I need to show them I’m only saying no as I’m following what the specialist told me!!

I’ll ask again about the note for oncology follow up too. When they called me about it they didn’t seem concerned when I said it’s not for me as I haven’t had cancer or any investigations into cancer. But I want it removed from my record and I hope they’ve made sure that whoever was waiting for info was updated. They wanted me to know my scan was clear so someone was waiting for that news.

OP posts:
RandomMess · 26/01/2024 18:58

Electronic records are pretty much instant.

JoanThursday · 26/01/2024 19:27

Alphabet1spaghetti2 · 26/01/2024 18:39

Double check that they have transferred and updated the right patients records. Dh has been declared dead by one of our previous dr surgeries - correct name but wrong date of birth and completely different medical history. That was a very interesting conversation had with a very embarrassed dr and practice manager.
many own records state I’m allergic to an antidepressant- I’m not and never have been, the vomiting was caused by being (documented as ended in miscarriage and surgery) pregnant - not an allergy. But no one will actually correct my records as I “am not a qualified doctor and must be mistaken”.

Good luck in getting it corrected.

Yes, this.

We found out that my dh's records had been transferred to a surgery 100s of miles away. We only discovered this because he got a text to day that his regular medication was waiting for him at a chemist outside Cambridge. We're in Yorkshire!

Lilylolamillie · 26/01/2024 19:37

That’s great to hear. Hopefully can be resolved next week.

OP posts:
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