I had stage 3 kidney cancer last year in spite of my emergencies into hospital the GP and Rhumatologist insisted Lupus had nothing to do with my kidney and lung problems.
Well, they are covering it up now, with 2 surgeons alerting me to a two year gap in my medical notes.
I have literally been poisoned by taking prescribed medicine I was allergic/not suited to because the notes weren’t there.
Finally I’m moving away from a high dose of Methotrexate.
My rheumatologist admitted removing all but last years records from my medical tecords. A year when I had 4 operations and over 10 serious infections for lungs and kidneys.
My problem is that I can’t remember if I had my kidney emergencies with Azaprithine or Hydroxychloroquine. I’ve now been advised to take the latter.
Has anyone had kidney problems on it?
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Iona467
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I’ve had no problems on hydroxy that I know of. Does your GP have records of when you started the meds? It’s unusual for them not to have been informed.
Meanwhile I’m furious, on your behalf, at the apparent missing notes. This is definitely something that needs serious investigation, which I hope is being conducted on your behalf. If the records were on computer, then they can be retrieved with technical ease. If handwritten, then that’s a straightforward negligence somewhere, but suspiciously convenient.
I very much hope you can be helped. Sending all my best wishes 💐
WELL SAID LK...am 🤯🤬 too! I’ve had similar “losses” happen...finally a few years ago decided to keep ALL my own records of FLIPPIN everything...it’s a nightmare...& even my well-documented adverse reactions + allergies get missed (eg post op on neurosurgery ward last summer ...result: they nearly finished me off)
Iona: am so sorry...well done figuring this out, though 👍👏👏👏👏👏
🤗 🥺good to see you back, even if only briefly...I’ve been here for 10 years now, but past 5 have been harder health-wise...that + being 66 (feeling more like 86) mean am increasingly less active...I just read + dip in & out: this WONDERFUL forum buoys me up whether I’m active or not ❤️🍀
It’s a bit scary, especially when my rheumatologist said he only keeps one year records for me. I have a lot of health problems for many different things.
Then I’m told 2 years missing at the surgery.
It’s a cover up for the mistakes they keep making!!
GP was the worst, couldn’t even go through my blood tests with me. Rhumatologist has ring me to say he went back to 2008 to put my file right, how he didn’t record it is ridiculous. Also he admitted to only keeping one year of my records! Couldn’t make it up!
This is totally unacceptable. Can you get your rheumy to put in writing that she removed your notes? Why did she do this??? Then you have black and white evidence to start a formal complaint. Daunting, but they really shouldn't get away with it. Unbelievable....
No!! If there's a 'gap' they are certainly not up to date. They need to give you much more info re the gaps. Please persist, difficult when tired, I know.
How on earth can a specialist justify removing notes from your medical records - and quite sure that tampering with medical records is an offence! I'm just wondering how he justified this to you...because there is no justification for this type of action !!
Not sure if you are aware but we all have a legal right of access to our full medical records...from hospitals and from GP's. I applied for both sets of mine and was quit horrified at what I found (bold results respirated as normal, that weren't, disgnoses not shared with me...and a whole host of unacceptable 'anomalies' (for want of a better way of putting it)! So, think if I was you I'd want to get hold of all my medical records.
Most hospitals have details on their websites on how to do this - look for 'subject access to medical records' or ring the patient information service to ask how you can do this. It usually involves filling in a request form and providing proof of identity (the application instructions will outline how to do it and what proof of identity is needed). Be aware, I had to put in a separate request for each hospital I was applying to - but each trust have their own Guidlines. If you do apply, you'll have to list every bit of information required - basically the full and entire set of medical al records (clinical notes from consultations, consultant letters and GP referral letters, blood test results (with reference ranges), investigations results (list the investigations if you can), operation and anaesthetic notes...and anything else that may be relevant to you. I asked for hardcopies of everything (rather than digital records) - but I did ask for digital copies scans and X-Rays (with hardcopy of reports for each). Once you have hardcopy of your full records it will become obvious where the 'gaps' (ha) are...and you'll have evidence to go along with a formal compliant (which I sincerely hope you'll make).
If you want records from your GP surgery you are also entitled to these (I wrote a letter to the surgery and they provided full records of everything). Also - surgeries should now provide full online access to all GP records - I print and keep everything (some don't provide full access - though legally, they should - and your surgery may have different application processes).
Think if I was you I'd want a copy of my medical records PDQ...as you have found...records can be tampered with...and quick access may prevent more tampering...or insertions (I've also heard of that happening - acts of 'back-covering'). And what a very damning statement to have to make!!
I've probably made it sounds quite difficult to apply...but it's really not. If you're feeling unwell and as if it's just to much to be bothered with, perhaps a family member or friend could help with the form and application letter. Or the patients information service at the hospital may help (some or excellent - some are a waste of space).
Medical notes issues aside, it sounds as if you have not been receiving very good medical care (that's an understatement)...and I wonder if you'll ever be able to trust that rheumatologist again (I certainly wouldn't). Think I'd be looking for a new rheumatologist (it's your legal right in England to ask for your care to be transferred - preferably to a different hospital, if that's possible for you).
As you're changing medications and you've had so many problems, they should be monitoring you very carefully and make clear what the arrangements are for quick access if things go wrong, you have a flare, or more infections. Hope they're delivering on these things for you.
And your GP doesn't sound much better - though the majority of GP's know little about Lupus or autoimmune diseases (excepting a lucky few). But that's not a good excuse, is it!
Finally, I'm so sorry that all this has happened to you...we hear some dreadful things here and this is truly shocking!! I can just image how disgusted, angry, and let down you must feel (and that’s another very large understatement 😬).
I tried to get my records years ago and the GP wouldn’t allow it. I said I’m entitled to them. Also, the GP was responding to my blood tests saying I had been informed and being treated each time I had an abnormal result, for me that’s at least 4 times each blood test. She got very ratty with me when I managed to get a copy from the receptionist.
I’m assuming you’re in England, but the same applies across the NHS. You are entitled to all records held on you, you are entitled to make a Freedom of information request ( that sets them scuttling in particular) , you are entitled to raise a complaint against a GP or hospital, and you can go all the way to the Parliamentary Ombudsman . I have, in my time.
Thanks, just re read this. Great advice. Will apply. My bad treatment goes on, fought to see a copy of my MRI back scan done in January. Received it last week, it also shows my pituitary gland is enlarged with a growth in it! No one thought to tell the GP and not seeing surgeon for another month!
Now seen my GP (new) and he has marked me for urgent treatment.
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