Getting a misdiagnosis officially changed

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.

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.

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

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.

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 😡

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"

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

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.

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?

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

#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.

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!

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.