Shitty remark in my records by GP

[littleMillie]

I’ll keep this as short as possible.
About ten years ago I was hit suddenly with arthritis, some kind of inflammatory disorder that even affects the soles of my feet, genital psoriasis, exhaustion, tendon problems and spinal disc degeneration. I was in horrible pain and had to leave my job.
These things keep flaring up and the doctors have gone from diagnosis to diagnosis after bloods didn’t reveal anything specific.
I went in once and saw a locum I hadn’t seen before and as soon as I started to speak she said there’s nothing the matter with you I don’t know what you want people to do.
I was so shocked. I said if you look at the reports you’ll see what’s wrong and she said there are no reports. So I left in tears and I never mentioned it or saw her again. I felt vulnerable I believed her when she said there were no reports. Turns out there was, I was looking at my medical record recently and there’s a comment in the consultations part all it says is “(x) chronic pain personality syndrome”
I’m devastated. I don’t know who the comment was made by but I’ve looked it up and apparently my issues are behaviour driven and I have a mental disorder.
X-rays have shown degeneration of the spine, hand arthritis, my wrists swell, I’ve had a rotator cuff sprain just from folding a towel, and scans showed tendon damage in the tops of my arms and it’s agony. I’ve tried all the tablets they make me ill apart from anti inflammatories but I had a stomach ulcer years ago so can’t take them often.
What would you do about this comment? I’m going to be nervous to go back with anything now, I even downplay most of what’s been going on because it sounds too far fetched and too much for one person to be having.
Why would any doctor comment like that it’s so damaging and it’s dangerous.
I’m absolutely mortified and I know it only takes one remark for them all to view you as either neurotic or mentally ill.
Should I ask to have it removed? Complain?

Absolutely crazy that this was in your notes. You should a million percent complain!

People have mentioned psoriatic arthritis, rheumatoid arthritis, bechets, osteoarthritis, degenerative disc disease...have you looked into axial spondyloarthritis/ankylosing spondylitis? I hope you get some answers and feel better.

If you think that the health or care information in your records is factually inaccurate, you have a legal right to ask for your records to be amended. For instance, you can ask for your home address to be changed because you moved house. You may also ask for something you feel has been inaccurately recorded, such as a diagnosis, to be corrected. However, it may not be possible to agree to your request.

A request can be made either by speaking to staff or in writing. The organisation will then consider the request. Where organisations agree to make a change, they should make it as soon as practically possible, but in any event within one month.

Sometimes, you may disagree with information written in your record, but the information could still be factually correct. For example, you may disagree with a diagnosis you were given in the past. Whilst you can still ask the organisation to amend the entry that you feel is inaccurate, an organisation should not change it if the health and care professional believes it is factually correct. There are exceptions to this, for example, where there is a court order.

In cases where all parties agree that the information is inaccurate, it may still be necessary to retain the information. For example, health and care professionals may have taken the information into consideration when making decisions about treatment or care. This information would therefore be needed to justify and explain health and treatment decisions or to audit the quality of care received. You can, however, request for a comment or entry to be made in the record to show that you disagree with the content and what you think it should say.

If you are unhappy with the decision of a health or care organisation to retain information you wish to have deleted there are some steps you can take. In the first instance, you can make a formal complaint through that organisation’s complaints process. If you are unhappy with the outcome of that process then you might consider making a complaint to the Information Commissioner’s Office (ICO) or consider legal action.

I think in your position I would join this FB Group amd ask for recommendations of private rheumatologists in your area if you can afford a private consultation:

https://www.facebook.com/groups/245599442299049

The go to suggestion would have been Dr Korendowych* *but I believe she is no longer taking out of area patients but could be wrong. Basically as there are a number of incompetent ones who don’t understand psoriatic arthritis and so many people need second opinions . She was great for me . I was told by previous guy I saw that the MRI on my sacroiliac joint was fine. She got the scan to see for herself and found that though there wasn’t any inflammation at the time it was clear that there was previous inflammation.

Did your previous rheumatologist do a full check of all your joints for swelling and pain? They are supposed to. You have psoriasis, swollen joints and foot involvement - hands and feet are commonly an issue.

Bath are a great department and doing a lot of work trying to educate other professionals to get earlier diagnosis because it is all too common that it takes ages to get diagnosed,

Differentiating Psoriatic Arthritis from Osteoarthritis and Rheumatoid Arthritis: A Narrative Review and Guide for Advanced Practice Providers
https://pmc.ncbi.nlm.nih.gov/articles/PMC8572231/

@littleMillie this article by experts has tables, check lists and diagrams which makes it easier to follow. Maybe just see if you agree that doctor was right. In diagnosing you with Osteoarthritis
not Psoriatic Arthritis. This actually says how

“PsA is frequently undiagnosed and/or misdiagnosed, especially because of the similarities in clinical presentation shared with other arthritic diseases, including rheumatoid arthritis (RA) and osteoarthritis (OA).”

@Seaitoverthere I agree with what you say. I had not seen your post when I added the article about differentiating Psoriatic Arthritis from other kinds and how it is often misdiagnosed.

I feel like I’ve spent my life fighting over health issues
a GP once told me I didn’t have a condition as “it was rare in children and never in adults”
he rang my consultant (who is a force of nature) and keeping a straight face was v v hard as I heard the yelling

I suggested I thought I had endo, and was told the pill was the only treatment so I went away. A decade later it took gynae and a bowel surgeon a full day in theatre to sort all my organs out that were stuck together

see also “I think I have cauda equina” met with “but you’re walking and have full bowel and bladder control.. we will send you for an MRI”
”ok you’re going to theatre now, it’s cauda equina”

How did you see that comment op from 10 years ago?

This medical gaslighting happens to women often. Doctors are more likely to assume they are mentally unwell and overexaggerating symptoms. I would look into putting a complaint in. You have all the testing and evidence that your condition is real.

Do a subject access request to gain access to everything on your records. Information governance dictates that you have the right to have any incorrect information corrected on your record, and something like this without any medical basis could be quite damaging in my opinion. Especially as with things like this if a health professional sees it they are more likely to dismiss things. I'd put in a formal complaint, ask to have this explained to you, and deleted / corrected if it is not accurate.

The rheumatologist did examine me properly he was thorough. He did X-rays and an mri. Said I had osteo and said oh your tendons are all swollen when he was checking my fingers.
He’s a lecturer and travels so he must be good, but… he said I think it’s psoriatic arthritis before doing any tests and wanted me on methotrexate immediately. I was hesitant with him not being sure so he did X-rays and said it’s osteo.
Good job I didn’t take the methotrexate I can’t take dmards with phenytoin, they’re anti epilepsy drugs and both are hard on the liver according to a lady from the pain clinic.

I was looking at the evergreen app you can see a little bit if you have it you’ll know what I mean. This page appeared in the consultation part that I’ve never seen before and it was all my history all down the page. I think it was either a glitch in evergreen or the surgery system it’s not something I’ve seen before but it disappeared when I went onto something else and went back to it. I said to my dp I think I’ve just seen something I shouldn’t have, so next day I used the nhs app and sent a request for a patient summary and lo and behold it’s there.

Absolutely ask for an appointment with the practice manager and insist that they arrange for it be removed.

That is so horrible. hope you get it sorted.
Have you had any blood tests done for inflammation markers? You don’t mention your age but there is a condition called PMR (poly myalgia rheumatica) which affects people over 60 and occasionally younger. I have it. You may want to read up on it to see if your symptoms are similar and you need to see a rheumatologist. You probably need at least testing for raised ESR and CRP… indicating inflammation.

Last year I found notes on my NHS app that were untrue, seeing the comments made sense as to why I had been misdiagnosed - these notes were being used to dismiss pain I have been suffering with for two years. It’s been incredibly difficult trying to get these notes removed or amended. I’ve had to lodge a complaint with PALs who are still ongoing with their investigation.

I recently had something on my record that didn’t relate to me at all. Said I had a health condition had an online consultation , which I didn’t and needed to see a GP.
I filled in the online contact form and complained and had a really quick call back from the GP apologising and said he would get it removed within 24 hours. They didn’t but I complained again a few days later and had a phone call again with an apology and it was removed straight away

When you get the NHS app or your summary care record you get everything ever on there from birth to now. It's seperated into tests, consultations (so any appointments you've had, texts sent etc), then like documents (so any letter they've sent you etc) and then also the medications you've taken both acute or repat.

You get it all, if you sign the summary care record form even when you registered with them you'll be able to go on the app (if you have the NHS app where you are) and see it all, you don't need to do a subject access request for that sort of stuff.

Or they'll be a scr system, I know some GPs you can also see it on SystemOnline even if your in a place within the UK where you don't have the NHS app. Every conversation with a healthcare professional, call to 111 or 999 (likely on documents), test results etc will be on there and anything that then happens is automatically on there as well. It's very useful to control things yourself unless you have health anxiety etc then maybe not as you may see things on their before the doctors contact you.

I’ve had bloods and no markers. I’m disappointed as my wrist was swollen and there still wasn’t anything in my bloods.

Isn’t it horrible coming across these things! Have pals came back with anything at all? I know gps defend each other is pals independent?

I saw it through evergreen but I think it was a glitch or something because the page I was looking at vanished and I’d never seen it before.
I can’t see anything really on the nhs app, definitely no consultations do you need to ask for permission to see?
I’m frightened to look now I think I’d have a meltdown if I saw anything else just yet.

Are you in England? If so then yes, if you go to reception and say I want to sign the Summary care record permission form to give me constant access to all my records - they'll bring it out and you'll sign it. Now more people are doing it, sometimes they ask when you register but you can always do it at any time.

Then you need to sign up for the NHS app. Do a photo and they'll check your ID because it's helathcare data etc and then they'll approve you and you'll have access.

Personally I find it very useful, you can order meds from it, see everything, get copies of any scan results as documents, any letters etc from secondary care appointments, you can see all your test results ever even from years ago, you can see what the lans write etc and yes you can see what they write from consultations with nurses, doctors etc, I find it useful and also easier to get medical evidence things as well. At the end of the day for me personally it makes it easier to check on the progress of things, and also go back and check certain things, results etc ans for me I'd rather know and deal with it than not.

I’m in England. I’ve got the app but can only see consultations up to 2023 and there’s no message saying I can see more.

You'll need to talk to reception, if you've signed the right forms then it's just automatic as you have an appointment etc it just goes straight on there and you can see the notes, if a med is prescribed, if a letter from secondary care or anything is written when they write it to you and your GP the staff at your GP scan it into the record, sam when test results come back, sometimes you'll see it before you talk to someone etc about it. So there is not any message about seeing more recent stuff, that doesn't exist, if you click the see your health record from there you should have all the tabs etc to further click on. It should update as anything is added to your health record from anyone. Or anything is added at all. I never ask to see more recent stuff it pops up as and when they add anything to my health record, I can see it all.

Talk to reception to see if you've sighed the right Summary care record forms, you may need to do so in person.

It was a really horrible. I initially raised a complaint with the practice manager, although she appeared willing to assist, it ultimately didn’t lead to the comments being removed . I subsequently submitted a further complaint, which dragged on for several months. Eventually, I was informed that one of my complaints would be used as a formal statement to be placed on my file, disputing the original comments, but that never happened.
I’ve since escalated the matter to PALS ( they are part of the NHS, so it is not fully independent), and I provided substantial evidence. They’ve been investigating the issue since June, and the deadline has been extended due to the complexity of the case. I’m requesting the full removal of the notes, as they are having a detrimental effect on my ongoing medical care. I keep getting told that inaccurate medical notes / comments are extremely difficult to get removed

Do not let that comment affect you even more by downplaying your symptoms, you must keep advocating for yourself

You can get seronegative RA aswell as seronegative Sjogrens(30-40% are seronegative) sometimes you can get somthing called UCTD which is bits of autoimmune diseases but not enough for clear diagnosis. I as other people have said ask to speak to your practice manager, see if you can get 2nd opinion rheumatology input.
I think I had mine since my 20’s now in late 50’s bits of I thought none related illnesses but now older they fit together, I worked in the nhs they were very unsupportive. Get support FB have good illness based support groups try keep away from US based groups, they just want you to eat or not eat certain things. Treatments differ in the UK & US. Hope that helps.