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?

I'd approach it from a personal data aspect, and would ask for them to correct your medical records to have a highly senstive, personal and incorrect remark removed.

My first consultant who was involved in research and has been practising for many years thought it was psoriatic arthritis and we discussed DMARDs prior to X-rays, MRI on sacroiliac joint plus bloods. With all the info he decided I had osteoarthritis. I knew him from my days of working in the rheumatology years ago when he collaborated with the study I was working on. He had many patients who sung his praises highly that I had interviewed so when I needed to see a rheumatologist privately as my GP refused to refer me on the NHS, I chose him which clearly with the benefit of hindsight was a mistake.

However he was wrong and I walked out of the appointment with second consultant with the diagnosis of psoriatic arthritis I knew I was getting before I went in. My current rheumatology team is at another hospital and have confirmed it is psoriatic arthritis.

If you have psoriasis plus joint issues and inflammation there is unfortunately a good chance it is psoriatic arthritis. Tendon involvement and feet issues are very common. The tendon issues in psoriatic arthritis is called ethesitis and it is inflammation in the tendons where the tendon meets the bone and I think from memory of a talk I listened to that the NICE prescribing protocol is a bit different when enthesitis is involved .

Unfortunately DMARDS can be hard on the liver but there are a newer classification of drugs called biologics which are more potent but generally a bit kinder on the body. Any one prescribing anything for you would need to look at all your other medications and make a decision based on that.

There is a problem with some clinicians not recognising the symptoms of psoriatic arthritis as indeed happened to me, which is why Bath University published this paper this year:

https://www.bath.ac.uk/announcements/scientists-urge-earlier-diagnosis-and-treatment-of-psoriatic-arthritis-to-prevent-permanent-damage/

Unfortunately I do now have joint deformity that has occurred since I was fighting to get diagnosed and the psoriatic arthritis demolished an already damaged hip as I had undiagnosed hip dysplasia but was ok and could run 10k. When the inflammation from the PsA kicked in my hip joint deteriorated rapidly and significantly so by the time I had my op the surgeon said approx a third of the top of my hip joint had been destroyed and I had to use two sticks to walk to the toilet.

With hindsight I have had psoriatic arthritis for many many years (mid teens I think) with long periods of remission. Menopause kicked it off badly which is common. I only knew about a family history of psoriasis in 2021 when my Dad was diagnosed for the first time shortly before he died aged 84. Apparently my brother, aunt and cousin also have it which I was unaware of. At that point it clicked that what I thought was bad dandruff after pregnancy wasn’t, that what I thought was a heat rash was inverse psoriasis and that I have had mild nail psoriasis and that this was all connected to all my various joint issues that came and went over a long period of time. Psoriatic arthritis can present before psoriasis in people with a family history.

It is also really important to understand that in some people who have visibly swollen joints and often some joint damage that their blood tests do not show anything and as mentioned above this is called sero negative. It can happens in RA and other autoimmune conditions but is really common in psoriatic arthritis. I totally understand wanting bloods to show something.

This happened identically to me.

PALS just closed ranks. I'm going to refer to the ICO next.

Have you read @Seaitoverthere ’s latest post?

This is so similar to my predicament.
Everyone on my dads side of the family has psoriasis, even the kids and I remember my dad having scalp psoriasis he always used Betnovate on it.
When the pain started I didn’t know I had psoriasis, what I thought was thrush or jock itch turned out to be inverse psoriasis I even get it on my vulva. I didn’t know you could get psoriasis there and I even thought maybe it’s an std I just didn’t couldn’t understand it. So I asked the rheumatologist can psoriasis be itchy, yes. So I went to the gp and it’s psoriasis.
Told the rheumatologist and that’s when he came up with PA but changed his mind after X-rays showing OA and bloods showing no markers.
This pain in my feet. It’s after I’ve walked anywhere and test then try and walk again it’s feels like I’m walking on hot pointy pebbles or something and I hobble. Sometimes it’s there but sometimes not.
Where my biceps are when this pain starts it’s normally if I’ve lifted anything that puts any strain on my arms. I was having to use one arm to lift the other it was that painful then it would spread to both. All that eased it was constant ice and keeping my arms still. It’s a lot better now because I don’t lift anything that will strain my arms. They did a scan and said one tendon was thickened and one had fluid under it, and gave me a steroid injection.
I have hip pain on both sides. Knee pain. Awful back pain and sciatica. My neck locks when I look up and I have to manipulate my head to unlock it then I get these headaches in the back of my head. I’ve got damage in my thumb joints, the rheumatologist said spikes which I guess are spurs.
I honestly think they think I’m making it up or imagining it it’s soul destroying. Oh and because I have full range of motion at the doctors and don’t verbalise pain the last one I saw said there isn’t any in her notes.
It comes and goes all the time but my back pain is constant.
Thanks for that post that I really appreciate it. ♥️

GPs used to have the expression 'heartsink' for patients they didn't want to see. They may still do. Psychiatrists write NFA, Not For Admission, on notes, no matter how depressed or even suicidal someone is. Inevitably this is aimed at those with the personality disorder label but also sometimes those with chronic alcohol and drug problems.

Re your bloods ‘showing no markers’

This is what @Seaitoverthere wrote:
It is also really important to understand that in some people who have visibly swollen joints and often some joint damage that their blood tests do not show anything and as mentioned above this is called sero negative

It does sound as though you may possibly have been misdiagnosed which we know is not uncommon and did happen to @Seaitoverthere (even at the hands of a top consultant).

If there’s anyway you can afford to go and see a rheumatologist privately please do . Do a search in that Facebook group I lined above for your area or if nothing comes up post on it and ask for recommendations.

That is exactly it with the feet. My RA patients used to say it is like walking in pebbles. When is all started again a few years ago I said to a friend that it felt as if I was having an RA flare. She is a nurse and said she thought I was too. I didn’t know about the psoriasis at that point.

I saw the consultant at Bath a second time and she asked how I felt having the diagnosis. I said I felt relief as at times I felt like I was losing the plot. She said so many patients say that to her after diagnosis.

This is exactly how I feel.
I keep nearly losing my mind, after what that gp said then that comment in my notes I feel like I’ve got no chance of anyone believing me.
Did you have to have scans or anything or were the symptoms enough for them to diagnose you?
I wake up in the mornings feeling ill. I can’t even explain that, just so run down and tired. It wears off but I still have no energy I keep saying to myself what the hell is wrong with me.
I’m not fussed about the treatment I don’t take to strong drugs well, I just want someone to put the pieces together so something falls into place.

You’ve been a huge help thank you and I’ll look at that group. I’m just sorry for you and everyone else that’s having this pain or been dismissed. ♥️

Pleased to be able to help a little. I had hand and feet X-rays, a blood test which didn’t show much, MRI on sacroiliac joint. Diagnosis was based on history, family history of psoriasis and my mild psoriasis, joint examination plus history of joint issues eg went to minor injuries unit with something resembling gout, GP said I had carpal tunnel but symptoms then went, needed physio on foot, shoulder issues, neck issue, swollen toes and feet plus I had photos of when my hands and ankles were at their worst plus morning stiffness lasting for ours .

Unfortunately the fatigue is part of it and I could never understand how I could be so fit as I was at one point yet so exhausted and feel no better after sleeping. I now think I did bloody well to do what I have done in the past given everything. The fatigue is fractionally better some of the time but I pace myself now under strict instructions from consultant.

I am so much better than I was last summer. This afternoon I have been up a ladder with my sledgehammer and I am taking down part of a stud wall. On a tea break and then going back up with my trusty reciprocating saw 😀 Unthinkable this time in 2024. We bought a wheelchair for me May 2024.

Send it to reception email address with a "FAO Practice Manager URGENT", in the subject box. Attach your complaint file.

Then write an email telling them to confirm receipt and forwarding on of email.

Sorry this happened to you op; they always seem to fail those in need the most

I’m just going to be honest - I don’t think there’s any point complaining about this because the note in question is a decade old. I really doubt the NHS is going to remove that from your record, they might add an amendment but I think outright removing it might make the following decade worth of entries not make sense. It might be relevant as context for future notes perhaps, because it very well may have influenced outcomes at the time.

Personally I’m taking legal action against my previous employer and my medical records are relevant to my claim, so I go through them after each GP appointment. My GP is fine about this, but on a couple of occasions they’ve made mistakes. When I ask for something to be amended on the day, the record is just edited as if the error never happened. But if it’s the day/days after the record was made, the GP usually makes a new record commenting on the previous note having an error. It’s usually only outright errors of unproblematic things they change as well like writing the wrong medication name or blood test result, ie something easily fact checked. Whereas the note you’re complaining about, could be a difference of opinion.

Look at Dr Vonda Wright's research on musculoskeletal syndrome of menopause caused by low estrogen as we age. You can find it via Google as it's open access. Estrogen is anti-inflammatory. HRT could work for you.

I’m so sorry you’ve had a rubbish experience OP. A few stray thoughts went through my head as I was reading: they might be helpful?

I have both OA and PA and both can be painful. I’m also pretty bloody certain that OA “flares” which is why it can cause such significant changes in relatively short timeframes. Either way, don’t minimise OA; it’s proper painful.

the personality thing is really weird; it is a code - that’s what the (x) in brackets means. I wonder if it’s been coded from a letter or similar and just happens to be at the same point in your notes? This can be a thing in notes from the past due to changes in the way they display between systems, I think? Idk.

and defo organise to talk to the PM and/or your own GP. I’m a GP and I’d want to get to the bottom of what’s is in your notes AND how to support you now. Hope it goes well

Have you tried writing your registered doctor a letter explaining all this and how you feel reluctant to see help again?

If your GP has taken blood tests and xrays, the reports of the tests would be in your file. Perhaps the locum doesn't have the time to look through them all, but then they should say. It is wrong to treat you like this without knowing why.

Is there anything to stop you saving up and paying privately for tests? I know we have a free NHS, but now only a minority of the population can afford private insurance so the system is grinding to a halt.

The term “heartsink” says more about the dr than it does about the patient. It describes how you feel when you see a name on your appointment list. It occurs when the Dr has come to the end of their repertoire of techniques to help the patient. Sometimes it is as simple as a personality mismatch. We all have people in our lives whose personality we struggle with. When I was practising, my partners viewed some of my patients as heartsinks, they just didn’t know how to deal with them. I felt the same about some of theirs, I didn’t know how to help with them. It was a “me” problem, not a “patient” problem.

From your description of the term used in your records, it sounds as though it was READ coded as a diagnosis over 10 years ago. Sometimes, there are mapping problems when a practice’s computer records systems change to a different supplier or are updated. The old computer READ code term is automatically replaced by a later one which doesn’t necessarily match/map what the original locum GP recorded. A bug in the programming. Sometimes they can be (bizarrely) different or have additional words so the meaning changes. I remember having some completely odd ones when we changed from one (legacy) system to another supplier’s system.

I hope you can get some answers and find some peace. 💐

I had similar chronic pain symptoms in my joints and muscles in my late 20s/early 30s, I have had psoriasis since the age of 6 and even have similar shitty remarks on my NHS journal.

25 years later I suffered a life-changing accident in Sweden and was sent for a multi-disciplinary pain assessment (examined by 10 professors/consultants of different disciplines). It was first then that I was diagnosed with Ehlers Danlos Syndrome (I fulfil the criteria for both Classic and Hypermobility types) at the age of 54. Unfortunately I do have osteoarthritis where my joints have ground together over the years when they semi-dislocated.

Awful, horrible gaslighting by the medical profession which is sadly all to common when they deal with women. In earlier times they would be committing us to asylums or mutilating us. I've been in a similar situation myself OP and it totally undermines your self belief and confidence but seriously fuck em, you need to be your own best advocate to get the help you need out of the NHS.

I agree. Start with the practice manager. Unfortunately they will tell you things in a record cannot be removed but if you have other supporting evidence showing the statement is inaccurate, they can put a note in your folder to that effect, that you’ve challenged the statement and there is supporting evidence to suggest otherwise. I’m appalled you were treated that way. Doctors like that should be struck off.

if practice manager won’t cooperate, you start escalating to other bodies like the Health Ombudsman and even the Information Commissioner. You could also complain to the GP regulatory body too.

@littleMillie I worked for a pharma company that produces biologics and seriously, when you see a specialist ask about them. They aren’t for everyone but have been life changing for many people.

I didn't have time to read 7 pages of responses so I apologise if someone has already raised this but have you been tested for HLA-B27?

You might have non-radiographic axial spondyloarthritis (nr-axSpA). Its the same family as PA but doesn't show up on x-rays. I was told for 10 years I had "stress" but in desparation I paid to see a private consultant when I was about to lose my job and finally got diagnosed and treated.

These consultations are ~£250 and usually they will continue your ongoing treatment by the NHS. I really do think its worth the money. The average diagnosis time is 8+ years, during which most of us get GP gaslit.

I'm really sorry you're going through all this. You say your feet and leg feel fizzy, do you mean pins and needles?

Yes, it must have been a very boring job transferring records from paper to internet.
My records are far from accurate e.g. no trace of having my tonsils out, asking about my ( non existent) diabetes, vaccinations a fantasy etc.

But no one has been interested in correcting them over decades.

I cannot help with your medical issues, but maybe I can a bit with the awful comment on your notes. I found a comment, 5 years after it was written, saying the GP believed I was “attention seeking and should be treated as such”. I actually had gallstones, but he had decided that my multiple presentations to A&E and the GP with severe chest pain were “attention seeking”. After my diagnosis and subsequent operation, I wrote to the practice manager, said I was appalled at his comment, his lack of knowledge and lack of any kind of medical tests to establish if I did actually have a medical issue. They apologised and removed the comment.

Yes but not like you’ve sat on your leg awkwardly when it goes dead it’s like tingly, sometimes it’s in my big toe as well and goes up the front of my leg in a line and in the same area my skin feels sore.