Getting a misdiagnosis officially changed

sandelf

Contact The Patient's Association www.patients-association.org.uk/ They have a helpline for just this sort of problem.

Thank you for this I will follow it up.

I have got the forms for getting copies of my hospital records, which should include the letter and A&E note from the doctors who have queried my diagnosis.

The thing is, having the wrong diagnosis can affect travel insurance and other things. My mother was admitted to hospital with a supposed UTI, the wrong next of kin and the wrong address details given which has caused havoc. All the information was given by the care home whose lack of care in recording information caused the admission to hospital in the first place. My mother aspirated something because eating causes her to sneeze, the care home recorded as choking on something so the advice given by 111 was for the wrong treatment. She should have been given antibiotics as a foreign body had entered her lung so when she wasn't she got pneumonia. The care home assumed it was a UTI as this was something she'd had on many occasions before. When she got to the hospital, they treated her for a UTI she never had so it was only when I got there I informed them of the aspiration event. It took a while to convince them I was her next of kin with an LPA so more time was wasted. Eventually they treated the pneumonia. However, whenever they discussed her case, the first thing they referred to was Mum had come in with a UTI. They also kept having to be reminded that they needed to speak to me as Mum had Dementia and her partner was not Next of Kin and never been NOK!
Discharge to a new care home was a potential mine field because she needed to be watched whilst she ate just in case she aspirated again through sneezing. Sorry, not in her care plan, she's had a UTI. No, she doesn't need CHC as she only had a UTI. No complaint acted on by the CHQC because the care home couldn't be held responsible for a UTI and they were given the right advice for a choking incident! Honestly, it was painful.
Finally on discharge where the letter said she'd been in hospital for a UTI, all her appointments went to the wrong address. I tried to get them to change the record but to no avail!

#M0nica I was diagnosed about 20 years ago with paroxysmal AF. For some reason I was also diagnosed with high blood pressure and put on all the relevant medication. I have never had high blood pressure in my life, including when I was pregnant, but my GP wouldn't take me off the blood pressure tablets because the hospital had put me on them. I wrote to my cardiologist and explained the problem. I was sent an appointment, he took my blood pressure and told me I was right. Immediately stopped the tablets and amended/made a note on my records. I would suggest writing to your consultant. I found mine very helpful. I hope it works for you.

Totally agree with you. I was diagnosed with having Asthma by the doctor and put on 2 inhalers (that didn’t work) after being on them for several months I finally got an appt to see the asthma nurse who order tests and turns out I haven’t got it - recently I found this was still on my notes as a doctor mentioned it - had I gone on holiday and had to have hospital treatment my insurance company wouldn’t have paid up as it would be on my records and I hadn’t “declared” it at the least I would have had a fight on my hands

Doctors I feel are too quick to diagnose and put you on medications without doing further investigations

Maybe it's quite difficult to actually prove that a person didn't have a stroke, and the balance of probabilities and subsequent opinions might not be enough to erase it from the record. They should be enough, though, to ensure that it doesn't affect any future diagnoses or medication.

Re the £1,000 travel insurance - could you change companies and not declare it?

Very frustrating M0nica. I hope you managed get it deleted. In complete contrast to your diagnosis, I actually had a stroke in my 40s. I was repeatedly told by the consultant at the hospital it was a ‘menopausal headache’ and to stop worrying about myself. A second milder stroke 15 months later was put down to ‘having eaten something spicy’ which I hadn’t anyway. I could write a book about the awful medical treatment I’ve had over the years. I wish you well and hope it all gets sorted.

Contact The Patient's Association www.patients-association.org.uk/ They have a helpline for just this sort of problem.

So sorry to hear about your misdiagnosis.

In my case the stroke consultant agreed over the phone 3 months later, and no driving for 4 weeks and horrible blood thinners etc, that I hadn't had a TIA.

I am hoping that her word is enough.

I also hope you can get your situation sorted out, preferably in writing. As Iam64 says here " we have to be on the ball"

The same thing happened to a friend of mine this year.
He’s a type 1 diabetic. For whatever reason he did something stupid with his medication.
Rushed to hospital where he was told he had had a stroke.
He knew he hadn’t as he had had a stroke before.
Whilst in hospital he really stood his ground to get this diagnosis changed: no joy.
He was not far off from having his holiday of a lifetime in the Canadian Rockies.
His insurance went sky high 😡

I had Polycystic Kidneys appear in my notes because they had "mixed me up" with someone else in the rheumatology department (I was told by the department).
The "formal" response was that a tick box had been activated.

They did apologise and added ]This is completely unacceptable, and as you rightly point out, contravenes Information Governance regulations.

It's so annoying though.

It really highlights the difficulty MOnica faces when we notice how much incorrect information is on our records - that we don’t know about

Iam64

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?

I apparently had had a sterilisation (amongst other things).
I pointed out to the GP that I'd managed to give birth twice since then, a miracle!

Not long ago I had this person's medication put in with mine at the chemist's so now know what meds she is on.

M0nica 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.

I understand what you posted.

As I said, my solution to my condition, which has a 10 yr life expectancy if left untreated, was to seek different (private) consult/treatment. Apparently the misdiagnosis (in my records) was removed by the operation that corrected the problem. There remain no affects to the prior misdiagnosis, my travel insurance and car insurance have reverted to my prior normal cost.

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?

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

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.]

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.

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'

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.

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.

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.

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.

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.

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.

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.