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 have worked with some rubbish doctors in my time. One Dr Knobhead M.D. wrote in the casenotes 'Patient suffers from T.A.P.S.Syndrome. No treatment available.'
(It was not me, btw)
I asked him what it meant... Thick As Pig Shit; right there, in the notes, for everyone to see.
And they get all pissy when we point out their errors, question their judgment and go off to consult Google. The days of doctors being all-knowing and godlike are so over.

Getting a personality disorder label often leads to dismissal of a person's concerns and is sometimes used to completely discharge a person from all services. Complaints of physical illness can sometimes then be seen as hysterical etc.

In June 2023, the Royal College of Psychiatry put out a flyer advertising a course on personality disorders. It stated that personality disorders were the "thorn in the side" of mental health professionals and that they often didn't want to engage with them. Not a single doctor, social worker or other mh professional raised any concerns about this. It was only a complaint by a psychiatric survivor-trainer that got it removed. An oncologist would never write about pancreatic cancer sufferers like this but this is how NHS psychiatry regards those it labels with personality disorder. Many of these people are women who were abused as children.

What exactly am I wrong about? That personality disorders aren’t controversial constructs? That personality disorder labels are often misogynistic?

You clearly do not understand the construct of this label. A simple google search will help you. It doesn’t just mean that the pain influences the persons life outside of just pain… that makes no sense. No pain exists in a vacuum. Of course pain affects people in myriad ways. This diagnostic label is making inferences and assumptions about the OP, akin to ‘cluster C personality disorders’.

Do you think it’s okay that patients can have diagnosis put on their records by locum GP’s without even discussing it with the patient?

This goes against the principles of trauma informed care, which all GP surgeries and clinicians should be practicing.

I’ve had X-rays and seen a rheumatologist, he said the joint damage with osteoarthritis and PA are different. So from the X-rays and no inflammatory markers he said osteo.

That is disgraceful and totally disrespectful! Awful. 😞 Trouble is we have to rely on these doctors being right.

“The days of doctors being all-knowing and godlike are so over.” That’s so true! It started being over a long time ago. The world has changed and not for the better!

@AzureStaffy I agree with you, it’s a massive issue, and needs to change. I cannot even count the number of women I have worked with who have been diagnosed with ‘borderline personality disorder’, and believed they were fundamentally broken and defective. In fact, they all had experienced multiple traumas and chronic invalidation. Many had undiagnosed neurodivergence. Labelling these women as disordered, located the problem within them rather than the abuse and trauma they suffered.

Even putting the personality disorder construct aside, medical gaslighting is a big problem, particularly when it comes to women’s health and pain. Surely we should be taking women seriously, not labelling and judging their experiences of pain.

My DM suffered with RA for many , painful yrs. In addition yo joints and pain, it also affected her eyesight and her eyes, her lungs.

My Ds has a few issues including kidney disease. He saw his GP several times, nothing wrong, you are overweight. He then saw his consultant and mentioned tge joint issues. She got him to see the RA Consultant and he was pretty much immediately diagnosed with RA. at 34.

My DF was also diagnosed with an autoimmune disease RS3PE. He had loads of tests, nothing came ip that could be pinned down, but one day his Consultant had a doctor shadowing him, who was actually studying RS3PE and recognised it immediately. Tests showed it to ge correct.
Just cos you dont know what it is doesn't mean its nothing.

A friend had her DS at A&E. When she told the doctor that her concerns had been repeatedly dismissed by their GP his response was bloody GPs have no idea unless its bloody chickenpox or a cold.

I would ask to be seen by an endocrinologist. Under active thyroid is not always understood by GP's.

@littleMillie

PALS are quite good - they are based in hospitals so I am not sure if they can intervene re notes in your GP records. I don't think GPs should be diagnosing any kind of mental disorder, if that's what this means. GPs do diagnose depression and anxiety etc but these often toxic labels like personality disorder are supposed to be confirmed after seeing repeated behaviour over time.

If you feel you need an advocate at any point there are charities who provide them though they'd need advance notice.

I have similar symptoms and have lupus…. Defo sounds auto-immune. I got fobbed off for years by various doctors in various parts of the country. Eventually after another miscarriage and major kidney infection and generally just feeling shitty. A locum at my very small exmoor practice said she thought she knew what was wrong, but I’d have to be poorly again for her to have the tests authorised… low and behold the week later I was really ill with migraines and another kidney issue. She did the tests and I had lupus. Some doctors just don’t listen. I feel for you.

You are bang on I’m reading a medical piece now and there’s a cluster c called pain personality. Whoever wrote that comment is basically saying I’ve a cluster c personality disorder. I’d like to know who did the assessment and when.

As others have said raise an official complaint to your practice manager. Surgeries usually have a structured complaints procedure published on their website so best to look at that first.
I'm so sorry you've been through this though, my experience of some locums has been similar to the point of being dismissive, and that's neither professional nor acceptable 😔.

I'm sorry you've been let down so badly by your GP practice. I'd be very upset to see a comment like that, too, and I think it would be a good idea to speak to the practice manager with a view to getting it removed.

If you have arthritis in your spine, causing discs to herniate, this could be causing the sciatic pain if one of the discs presses on the nerve. I know how horrendous this is. I always advise people not to let sciatica go on too long and to press their GP for a scan; My GP fobbed. me off over Sciatica and now my leg is so badly damaged and has had a huge effect on my life.

Is there another nearby GP surgery you could join if you remain unhappy with the current one?

Rather than making a complaint in the first instance, which will take up a lot of energy and doubtless increase you r anxiety, I wonder if you could make an appointment with a GP of your choice and explain how you feel about this and ask them to explain your notes to you and once they’ve done that perhaps the next steps will be evident. This is horrible, by the way, and, as others have said, GPs are notoriously bad with results and records etc. I’m going through a bit of a process right now myself, so I’m familiar with the issues! Good luck.

Yes, caution is probably good advice here. No one likes being criticised in their work and a common reaction is defensiveness. Best to think about what to say and to write it down to refer to in a meeting.

Thanks for sharing that I appreciate it.
I’m already looking to move there is one nearby I can go to, but I’m worried about this comment/diagnosis. It just doesn’t look good I think it’s a flag.

And I’m worried I’d be seen as one of those people who go from surgery to surgery “trying to get attention” I know why people do this now and it’s probably well justified.

itsabeautifuldayjuly

Is a psychologist and said it’s not a psychiatric diagnosis. This is reassuring.

What you (or the locum doctor) is referring to is not the same as Personality Disorder. I personally don’t think it will help if you make a complaint without asking for clarification first.

Surely to be diagnosed with a Personality Disorder you would need to be assessed by a psychiatrist?

Sorry to hear you didn’t have best experience with locum doctor. Not all doctors have the best bedside manner.

As the late, great psychologist Dorothy Rowe said, the system will never change because too many people get money and power out of it. I agree.

To clarify - this ‘chronic pain personality syndrome’ is NOT a recognised ‘personality disorder’ however it is based on the construct of ‘cluster c’ personality disorders which are very controversial. I can understand why the OP is unhappy about this, and it would be wise to discuss this with a GP to get a better understanding of why this happened. The locum GP may not have realised the impact this would have, and the understandable concerns and distrust this would create. I believe that transparency and trust in HCP’s come hand in hand, and any diagnosis should be spoken about with the patient.

I am a Consultant Clinical Psychologist, if that’s relevant.

ny friend very over weight every time she goes to the doctors with anything they say its her weight, evan ear ache, you know yiou are ill good luck

I was coming on here to say this. My neighbour was diagnosed with PA ten years ago. He went on the carnivore diet in January and the difference it has made to him in genuinely incredible.

He dumped oxalate for the first 8 weeks but after that, he has really picked up.

I have lupus and I was diagnosed very quickly due to seeing a great GP who got the right blood tests done, and which were positive.
Sadly many patients with autoimmune disorders take years to get diagnosed properly.
I would ask for clarification of the pain personality issue and I would also ask for at least ANA, CRP and ESR tests plus thyroid hormones and depending on your age menopause checks, just for starters. It’s not normal to be in pain all the time!

Sorry - you maybe didn't read my whole post!

As part of my assessment I will always ask someone about their mood, anxiety, stress, risk - as all of these things go along with a chronic long term conditions and it wouldn't be a holistic assessment if i didn't address these topics. If someone is living with chronic pain and not experiencing any of these things at points then I'd love to know what it is they are doing to prevent that! That is not labelling or stereotyping patients, it's over 25 years experience as a HCP within that area and a high level of clinical reasoning and expertise based on evidence based practice. It's not a 'personality' per say but I can be fairly certain all my patients will have experienced the same range of additional symptoms as a result of the long term condition.

I really don't read this as the GP is saying the OP has a personality disorder - instead saying the person lives with a chronic health condition that is causing more symptoms than just the pain, and those symptoms are impacting on who they are, how they act and what they can do - the chronic pain is impacting on every aspect of life. Living with a chronic health condition is so challenging for an individual, I fully recognise that and always aim to work with an individual to address whatever it is that is significant to them (my job isn't to diagnose medical conditions) so they might be referred to me because of their chronic pain but the biggest symptom at the time of that is they are now depressed (because they live with chronic pain, not that the depression has caused pain!!) I would do all that I can to support them with their mood - it wouldn't be holistic of me to say 'not my issue, I'm purely about the pain!) I'm fully in agreement that a holistic, evidence based, multi disciplinary approach is 100% what is best for the management of long term health conditions!

So sorry OP. It sounds like you’re really going through a hard time.

I work for a complaints department within the NHS. You have two options, you can go directly to your GP practice and raise a complaint or you can contact your local integrated commissioning board (ICB) and raise a complaint via them. They will contact the practice on your behalf and ask them to respond. They will also do an independent review if your complaint involves medical aspects. A doctor will review the records and say whether they believe the GP was correct or not.

As far as changing medical records, there’s unfortunately not much that can be done unless it’s deemed that the comment is completely inaccurate and false. You can possibly add a note on the records to say you disputed this or disagreed with the diagnosis/comment.

I hope that helps a little.

@Dazzledee I did read your post. I quoted the part I was questioning. But you are now saying that you don’t ’identify a whole personality’ in 2 minutes as you originally stated, I’m glad for that.

I won’t keep repeating myself, I have explained at length that what the GP ‘diagnosed’ is based on the construct of personality disorders, which is controversial. The patient has not had an assessment - multi disciplinary, holistic or otherwise. That’s the point. She also hasn’t received a medical diagnosis that explains her symptoms. Any diagnosis should be discussed with the patient and the OP’s feelings around this are valid. Hopefully she can find a resolution.