Getting a misdiagnosis officially changed

It hasn’t happened to me but I presume you mean it should be deleted from your medical records? Surely a sit down with your GP to discuss this misdiagnosis will be enough, as you’ve set it out very clearly on here?
At the least the diagnosis in your records could record a query around the TIA?

My husband was told the blood test conclusively confirmed he had a TIA.

I'm assuming you didn't have one M0nica, or that it was taken too late to be accurate?

I'm not sure if they can change your medical records retrospectively but surely the Consultant you saw will put it on record that the previous diagnosis was incorrect, why and log the correct diagnosis. This should then be sent in writing to your GP who should also update your records and also to you so you can present this to insurance companies..

I would speak to the Consultant's secretary in the first instance.

You have a legal right to have erroneous information corrected on your medical records. It won't be deleted, but struck through and a note added. Contact the relevant hospital and ask for their procedure to correct your medical records and what evidence you need to provide. Good luck.

I had a "false" condition put on my medical notes at a major London teaching hospital.

It didn't get as far as me having medication but I did have to write to their data protection officer with a "formal request for rectification" I said it was their responsibility to rectify it in accordance with the GDPR requirement that data held is accurate.

I copied this to Patient Records and to Information Governance as I had spoken to numerous people and they were all useless.

I asked for confirmation that they had corrected the error and got it.
I then asked them to please alert my GP to the correction.

There's a time limit for them to correct (or at least decide if they need to) and if not say why not - I think they need to tell you if they won't. I can't remember how long they can take but think either 28 or 40 days.

I did this all by email.
I included my DOB and hospital number.

Good luck!

Callistemon21 and Oldfrill I was told by email that they had "removed the incorrect data as requested".

Not a correction but a removal.
I haven't asked for further clarification. It could be sloppy language but I did just go back to check.

I think it is going to be more difficult than people think as I first have to prove I have not had a stroke in the face of a young doctor who was determined to prove I had had a stroke and doctored everything I said to fit her diagnosis and will undoubtedly insist her diagnosis is right.

To be fair, I do not think she did it with malice aforethought, rather from an excess of enthusiasm and a desire to prove her worth.

Reading all your helpful comments above and using them to power my own cogitations, I am beginning to think that the way forward is, first, to get a copy of all my hospital notes, and read them through, then draw up a table of what symptoms I had and the two interpretations, stroke and non-stroke and then possible approach the Patients Advice and Liaison Service at the hospital and go from there.

It is all a bit complicated because all the stroke treatment assessment etc was done under the NHS and all the treatment for the condition I actually have has been done in the private sector because the Doctor I was seeing was so fixated on proving I had had strokes that she would not even admit I was having any other symptoms that needed taking into consideration.

I had NHS treatment, including surfery for the same problem when it affected my right arm and the symptoms in my left arm were/are almost identical.

I cannot help with your main problem.
I hope the posts on here help you to get it sorted out.

As regards taking stroke medicine. I am pretty sure I have read somewhere, and a physio once said, they cannot make anyone do something/take medicine, that a person does not want to take.

Even my dentist says the dental treatment I have, is up to me. She cannot insist on anything.

I would contact your local health board with regard to having your medical records changed they should be able to point you in the right direction.
With regard to the medication, I would definitely just stop taking the item you no longer require, especially if it is working against another medication.
Your GP can just remove them from your repeat prescription. They should also be able to put a note on file With regard to the miss diagnosis but I don't think they can remove it completely, also you would need it removed or amended on your hospital notes. I would have thought that the consultant would have written somewhere about his thoughts/diagnosis.

I think in your position M0nica I'd ask for my medical records as you suggest.
I think they are allowed to charge an admin type fee for thus. My daughter paid £40 a few years ago.
I think that does have a 40 day window to provide them.

Good luck M0nica.

My local hospital has a group that meets monthly to monitor what happens to cardiac patients in hospital. This is also open to the patients and members of the community to attend.. maybe your hospital has something similar..

Have you thought of contacting PALS, M0nica?

www.nhs.uk/nhs-services/hospitals/what-is-pals-patient-advice-and-liaison-service/

Callistemon213

Have you thought of contacting PALS, M0nica?

www.nhs.uk/nhs-services/hospitals/what-is-pals-patient-advice-and-liaison-service/

Yes, once I have drawn up the schedule of my symptoms and their interpretation.

The difficulty has been that I was so swept up and mown down by the first diagnosis - and while all the scans I had showed no signs of a stroke, they did revealed other problems, none of which are likely to have any affect on my health or life span, but there is a very small chance they might, so while I am not worried about them, they remain a little niggle.

The other thing is that, although I doubted the diagnosis from the start, I had no evidence to support it, and it has taken 18 months of drawing together small pieces of evidence from what other doctors and medical staff have said, until in the last 10 days, three things happened that are clearly measureable and unarguable. I will be up medical experts here.

First I had another incidence like the one that got me into this mess in the first place, but it was milder and I was able to link it to something I had done the previous day. Secondly I was seeing a specialist the following day and told him and he asked me whether I had been holding my wrists in a certain postion and when I did, he immediately told me what the probable cause was - and it was associated with my osteoporosis, nothing to do with a stroke. Thirdly my optician has just bought a very modern machine that measures your field of vision. She measured mine and it was very perfect.

My second stroke which I haven't really mentioned, involved one eye and a temporary loss of peripheral vision. Again my symptoms were writtten up to prove a case and were unsupported by further scans and cognitive tests.

It will be a struggle, but having 'strokes' on your medical record, like having heart attacks, causes so many further problems, where saying you have had a broken arm when it was just badly sprained isn't really of any import.

M0nica, this is such a strange co-incidence. This morning, having coffee with a group of friends, and we got talking about holidays, which led to insurance etc. one of the group mentioned that she had had a medical condition, i.e. a stroke, removed from her records. She found that it had been incorrectly entered on her NHS records. It took a lot of effort, but having proof, in writing, that she definitely had NOT had a stroke, the notes were removed. As she and her husband are soon travelling to Florida, it could have caused insurance premium increases. It was a lucky find by her, as if she had not known about her records, and then had 'an incident' whilst away, her insurance could have been invalidated as she had not declared the condition.

what was the' real cause of the original problem'?

I suffer from a form of migraine that resembles a tia so have had two occasions when I've Had brain scans and tests that showed I had not had a mini stroke.. However I was prescribed Clopidogrel an anti platelet medication that stops platelets clumping together forming clots. and was told I can continue to take one 75mg a day which I'm happy to do.
the migraines I sometimes get cause sight and speech problems and last about 40 mins.

Coincidentally, I have a similar situation. I asked my GP to put a note on my file, and he's added the real diagnosis without removing the first, so it now looks like I have both conditions.

I was considering asking for an appointment with the practice manager, as I think she is responsible for records. I don't want to make a complaint, but would like it to be corrected. It matters for insurance, and could make a difference to how I am treated if I go to hospital unable to advocate for myself.

Like you Doodledog I do not want to make a ocmplaint about the doctor. She is very young, very clever and has an Oxford Fellowship, but her youth, inexperience, and enthusiasm have led her to believe that she knows better than the patient what their symptoms are and only hears what she wants to here and those are dangerous traits in a doctor.

But like you the misdiagnosis has wider effects, which Doctors do not often think of. When I saw the doctor last week who provided some of the answers, when I told him the problems the stroke diagnosis was causing me, he actually said, that it had never thought before about the wider effect on someone's life of some diagnoses.

I sympathise, M0nica.

Does anyone know whether it is worth approaching the practice manager, please? I'm away just now, but was thinking of looking into it in September.

I worked out I could never change my misdiagnosis.

I changed my attitude to finding a doctor who could see through and around all existing tests, correctly diagnose my serious but rare condition, remove problem(s). Consequently I'm healthy again.

The problem is Norah thaat being misdiagnosed with a stroke has many ramifications into my wider life and is currently costing me about £1,000 a year.

Lemsip I have carpal tunnel syndrome. I had it in my right arm first and eventually needed surgery, which wasn't entirely successful. then it began to develop in my left arm and then one day I had this sudden onset of carpal tunnel symptoms that left my arm in great pain for several months. This is atypical and this is why I was sent to the stroke project for assessment. The doctor agreed my symptoms were atypical for a stroke as well, but those great weasel words 'for the time being we will monitor it as a possible stroke'. That so soon became. 'Your stroke'

M0nica someone else's medical records were mixed up with mine at our surgery. I only found out years ago when our GP (since retired) mentioned an operation I'd had and I said "No, not me". So he printed them off and passed them over the desk to me and it was quite astonishing, not just that operation but other medications, diagnoses, procedures were on my records that were nothing to do with me.
He said he'd sort it out and he did, apparently, but even the other day, years later, the receptionist and then the GP insisted I had been prescribed a medication which I have never had. They said it must be right as they check my DOB now, too.

It is worrying.

MOnica- have you accessed your medical records via the my GP app?
I empathise with your frustration regarding travel insurance. My existing health conditions cost financially but a recent awaiting surgery issue prevented me getting any insurance at all, despite my consultant and GP confirming I’m fit to fly. Thankfully the surgery has been done and I can get (at huge expense) holiday insurance.]

Following a bungled operation back in 1990, resulting in me having four operations in four days .The blame was put down as me being a 'bleeder'. In fact I have always been the
- and recover very quickly from wounds, etc.

I did take me several years to get that taken off my medical records. I did not make any official complaint regarding that operation in 1990 but fought that on my record. Took me about five years to get it removed

As for the accuracy of medical records, like Callistemon, I had someone else’s records mixed with mine. The letter to my consultant cardiologist listed my existing physical medical conditions accurately. It referred to my severe depression, my psychotic episode over the millenium when I believed the world would end and to my schizophrenia. Luckily I opened and read the referral letter before the appointment. The secretary who typed it didnt apologise, she mumbled an excuse that she’d had two screens open and transposed them. I did get the practice manager to remove the letter from my records

It seems we have to be on the ball. I’d try the practice manager and Pals, MOnica
Is it worth considering a private appointment with a consultant prepared to correctly diagnose?