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 was sent notes that were left on my son’s records once by accident. He went through a period of being sick every morning and waking up with a headache. I went and got him checked for it. Then he started having heart palpitations, they were bad, his rate would go to 200bpm sometimes. So I went back for that. Looking back I think it was all anxiety related but at the time I was terrified. Anyways the notes said ‘dramatic parent, always thinking there’s something wrong with him’. I was fuming and made a formal complaint about him. He was notoriously grumpy and very rude to patients. Nothing was done. But I just make sure I don’t see him. If I book an appointment I specifically ask to be seen by someone else. Don’t let this put you off going to a doctor. Just ensure you see a good one.

@BreadRollI’m not sure if I’ve been tested for that but the rheumatologist did a lot of bloods. Even tested me for brucellosis as I’d been working abroad with animals.
I was signed off when he said I didn’t have RA or PA so I really don’t know.
This was all about 10/12 years ago now.

Some of my comments are general and didn't apply to me personally. I'm not looking for any answers: I know what happened to me. If some doctors want to think I'm inadequate that's up to them.

I was an advocate for years and accompanied clients to meetings with doctors. That included the fictitious Munchausen Syndrome by Proxy which ruined some mothers' lives. Basically a diagnosis with no scientific basis but which got women convicted of killing their children although they were innocent. It was lucky that Sally Clark had the contacts and education to challenge her unfair imprisonment. MSP was removed as a diagnosis but there was no punishment for those in the medical profession who inflicted this horror - especially the man at the centre of it.

I would definitely see your practice manager because that by itself isn't normal and suggests an issue. I'm no Dr, but my husband suffered from pins and needles and lack of hair growth on his foot and leg and it turned out he had intermittent claudication and needed stents. Stick to your guns, make a list of your problems so you don't forget anything and make sure to ask the practice manager for a sympathetic Dr who will actually listen to you and send you for further investigation. Good luck 🙏

Definitely complain. Even if the GP felt you had symptoms of a personality disorder, they are not qualified to diagnose that. Additionally, this is not a diagnosis under DSM V or ICD11

I have psoriatic arthritis and your symptoms sound very simllar to mine . It’s worth checking out as it’s not as well known as the other inflammatory arthritis’ like Lupus or rheumatoid . Inflammation doesn’t always show in the blood with this either . Neither does rheumatoid actually.

Please ask for an appointment to speak to the practice manager. Explain to her what happened at your consultation and the comment that was added. She can arrange to have this disregarded from your medical record. Unfortunately it will always be in your record but it will be flagged as added in error.

In order to have something removed from your medical records you have to prove it is incorrect. It sounds as though you can do this quite easily.

FWIW I have a letter from a Cardiologist suggesting my new onset chest pain had been anxiety related (following admission). A cardiac MRI a few weeks later showed it to have been a heart attack.

Having worked in primary care for many years, Practice Manager is not the way to go. They are employed to run a private business. They are purely financial, not in the slightest bit medical. OP, you need to speak to a GP Partner or the Head Receptionist/Operations Manager to speak to them for you.

I also worked in primary care for years, in my practices it would be the PM that would address this with the gp and agree a way forward and the gp would amend the record. PM’s are certainly not just financial in all surgeries! To try and remove something from a medical record is a really big deal these days and needs to be handled carefully to provide a full audit trail.

I would be upset but by doing a little digging:

"Chronic pain personality syndrome" is not a formal diagnosis but describes how chronic pain can cause personality changes, such as increased anxiety, anger, and frustration, and a reduction in motivation.

I mean this with all kindness, is it possible the note is indicating that you have anxiety as a result of the chronic pain rather than how you have taken it (understandably so)?

Things have changed.

I'm so sorry to hear everything you have experienced from the surgery
Yes, so true, it seems to just take one narrow minded uncompassionate professional to abuse their power, write something which suits their narrative & oftentimes, the rest then reading the stinking comments, follow like sheep 🐑📖🐑
So horrendously wrong & I'd most surely confront this slanderous rumour & request how to have it removed
Wishing you all the utmost very best
💚✨💚

HLA-B27 is a genetic marker. Not everyone who has the gene gets psoriatic or spondylo but almost everyone with these conditions does. It's a strong indicator and if you test positive that's really important for any doctor trying to diagnose you. It's not standard for rheumy tests (ought to be but isn't) so you might not have had it.

I would say also that a lot of GPs don't have a clue what spondyloarthritis is, I've had to explain it to some of them which is... concerning because it's no rarer than RA, but there it is.

Sorry you're having such a tough time <3

You could challenge them via CQC or PALS and ultimately escalate to the trust that they come under. Best wishes.x

Some people shouldn’t be doctors. She is one of them!

It was a locum who didn’t know her from Adam let alone what ‘personality’ syndrome she had.

Yes but she doesn’t actually know it was the locum ….

Maybe in your narrow minded experience, but not all practice managers concentrate solely on the financial side of the job. The ability to alter records for audit will never change after such cases as Shipman. Maybe in your practice the PM was only interested in the money side, but in most they care about patients and the reputation of their practice. But we’re not here to discuss you feeling superior, we are meant to be commenting to help the OP. So this will be my last reply to you!

My point is that particular “personality syndrome” is actually caused by chronic pain not the other way as I think may have been taken

Whatever it means it could be used to dismiss the idea of pursuing further investigations into the cause of the pain or the treatment of it.

It was a stupid meaningless comment.
All it can mean, official and clever though it sounds, is that someone in pain reacts to pain, but with the added dismissal that a personality disorder of some kind could be involved.

Martha’s Rule ( allowing people to ask another doctor to check) was brought in after a young girl died of sepsis after her “Anxious” mother was ignored when she tried to tell doctors and nurses that her condition was deteriorating.

Something could be put on a note about certain doctors: Power personality syndrome.

I'm another one with psoriasis (at age 10) diagnosed with Psoriatic Arthritis (age 45). I've been on methotrexate for 20 years (no more psoriasis, yay) and last 13 years biologics (used to be Humira till it stopped working, now Enbrel). Adding this to show I do have some knowledge of this. My excellent GP (I showed her a huge sausage finger and reminded her I had psoriasis) got me straight into the Rheumatology dept at the local hospital where I would have yearly "staging" x-rays on hands and feet to monitor the changes. I do feel, OP, you need to have a review of your symptoms / pain, and not at GP level. There's been some great advice on here to address the comment on your notes, but you do need to get what's going on now looked at. New x-rays, etc. Have you had a Dexa scan?

I also get a burning sensation in my feet, couple of my toes don't move (can't flex them, bend them at all); as another poster said, small digits, fingers and toes. I see a good chiropodist and get the hard skin removed (don't know if that's a psoriasis thing).

It literally means something caused by pain thereby recognising there is pain that needs to be investigated

as a result of chronic pain

the locum was shit in their behaviors and attitude and it’s appalling that the route cause of the pain has not been identified. All I meant was that the comment itself would not result in it not being investigated, I wasn’t attempting justify it in any way. The treatment OP has received appears to be down to complete incompetence by the medical staff and is disgraceful that after all this time still no way forward. We just have a difference of opinion of how that comment is interpreted

Thank you for explaining what you mean @Megsy81. It would be interesting to do a trial by showing a lot of GPs the patient note and letting them report individually on what they are alerted to or feel about the patient as a result.

I avoid reading my notes because I was brushed off as just fat for 10 years but my GP kept dragging me in to do bloods every 3 months (that should have tipped me off)

I eventually got a letter from the hospital, a copy of a letter written to my GP asking if I was being treated for my ever worsening thyroid and high uric acid levels

I moved to a new doctors, went in and asked how much more weightloss I needed for the pain to stop as I had lost 10 stone and it was much worse
He looked at me quizzical and told me it wouldn't and that he had called me in to see what meds I was on for my joint condition as he couldn't find it on my repeats....... what joint condition

Everything now is put down to that and I'm treated like a drug seeker if I go in during a flare and unable to cope so I dont want to know what they say behind my back