WARNING: If you have FND and live in UK

[sykgirl]

Hi,

If you live in UK and have FND you may wish to check your online medical record has not been incorrectly updated.

I have had FND for over 12 years following a virus. When I was diagnosed 10 years ago, my consultant neurologist wrote a clear diagnosis letter, stating that I have a physical illness. I recently went to check something on my online medical record, and noticed that they had added "Conversion Disorder (psychological)" to the summary of my conditions. I emailed and asked them to change it to my actual diagnosis, and could see they had changed it to " Psychogenic Conservation Disorder ". I have never been diagnosed with Conversion Disorder.

I have just had a long conversation with the practice manager at my surgery. It transpires that something insidious is afoot; a GP did not update my medical record, a computer did! Apparently the coding for conditions has been updated on the computer system, and it had modified all cases of FND to Psychogenic Conservation Disorder. When she tried to update it manually it changed it back and gave the message "the preferred term for FND is Psychogenic Conservation Disorder ". When I explained that whilst Conservation Disorder is a Functional Neurological Disorder, not all Functional Neurological Disorders are Conservation Disorder, she found a way of tricking it into saying FND, but she said I should check it regularly because she isn't confident it won't happen again.

I hope nobody else is impacted, but felt it best to warn you all just in case.

Best wishes

[Seamer37]

That's very scary !!

[sykgirl in reply to Seamer37]

Indeed! I don't know whether it's nationwide, my nhs trust or just my practice, but even 1 misdiagnosed person is 1 too many!

[Seamer37 in reply to sykgirl]

Definitely. It's bad enough trying to find a GP that understands what the condition is

[210272 in reply to sykgirl]

Agreed - misdiagnosis (or having a diagnosis changed without a further consultation) is always damaging, including to the reputations of your doctors and the NHS in general. If you are a member of the UK FND Hope Facebook group it should be reasonably easy to find out if this is happening to others and, if it is, there could be grounds for a class action. I would also ask your practice manager to report what happened re your coding to the UK Neurological Alliance since accurate coding is crucial to research.

[sykgirl in reply to 210272]

Good idea, thanks 😊

[210272 in reply to sykgirl]

My pleasure 😀 I think your original neurologist should be told about this in case it is happening to other patients in the UK but, again, I'd ask the practice manager to facilitate this for you so you don't have to do lots of toxic admin. Clearly DSM should be informed about this too. And I think the practice manager is well placed to give feedback to Hon Prof Jon Stone (if you haven't already done this) since they will be able to maintain your anonymity, if that's your preference.

If it's any consolation, I am aware that - now we're in the Open Notes era of medicine in the UK - people with all sorts of rare conditions such as pernicious anaemia and rare neurological conditions are accessing their notes and finding terms like 'functional' or 'MUS' in them, written by their doctors who didn't mention them during the consultations. Said doctors may or may not be aware of either the potential coding implications or the potentially negative impact this can have when accessing primary care.

[sykgirl in reply to 210272]

That's awful! And frightening!!! Like ill people don't have enough to deal with 🙄

[210272]

Hi sykgirl,

I'd seen your post from a few days ago about your experiences with the Conversion Disorder dx being added to your notes and am grateful for your update. As you probably know, the latest iteration of DSM lumped Conversion Disorder under the FND umbrella so it is worrying to hear about what happened to you. I'm glad that the practice manager was able to help you and that you were also able to educate her - hats off to you for that I think Hon Prof Jon Stone needs to know about this (via his feedback form) and ditto Dawn at FND Hope UK (but I know she's likely to be out of the office for a while). Also I know there was a Parliament event about FND about a month ago so it could be worth contacting your MP (whether or not they attended that event) to let them know about this so they can investigate further on your behalf.

All best wishes.

[sykgirl in reply to 210272]

Thanks, good suggestions. Not great today, but will do those when I feel up to it. Where would I find Hon Prof Jon Stones feedback form?

[210272 in reply to sykgirl]

Ah, sorry, only just seen this. Jon's feedback form is on his neurosymptoms.org website but I'd ask your practice manager to do this for you and/or to email him directly and bcc you into the email. However the feedback form might be better because it can be viewed by the public.

[sykgirl in reply to 210272]

Thank you 😊

[210272 in reply to sykgirl]

Hi sykgirl,

Just wondering if you or your practice manage managed to find out more about your re-coding? Since it's FND Awareness Month people need to know what happened to you because even if it was an isolated incidence (which I doubt) it was very, very wrong. I don't know if you are on Facebook but there are lots of public threads about it so you could post in one of those, if you have enough spoons. If not (and only if you'd want me to) I could post your Warning post in these threads, without using the name you use here, of course. I'd be happy to put it on my timeline, too.

Really hope you are doing OK and please let me know if you want me to get the word out about your experience with re-coding.

[sykgirl in reply to 210272]

Hi,Unfortunately other events have taken over at my gp surgery. The bigger surgery that we are branch of has pulled out at incredibly short notice, and it is looking likely that the surgery is going to have to close. Obviously this is all consuming for the staff, who are all potentially going to lose their jobs. Pretty stressful for me too, as it means starting all over again with new gp and having to travel to see them.

I emailed the Neurological Alliance when it first happened, but have heard nothing back. I'm recovering from a virus and not feeling great, but I am more than happy for you to share on my behalf, thank you. Happy to say I have not heard of it happening to anyone else 🤞🍀

Thanks x

[210272 in reply to sykgirl]

Thank you and I am sorry to hear about your practice and the ensuing palaver for you and them. Having said that, sometimes getting a new GP can be a breath of fresh air when we're dealing with poorly understood symptoms and coding issues. Also sorry to hear about the virus and I hope you feel better very soon. I think the NA are snowed under and understaffed but I hope you get a response from them soon. I'll make a post with the caveat that you haven't heard of it happening to anyone else and with my fingers firmly crossed that it doesn't at any point.

[sykgirl in reply to 210272]

Thanks 😊

[210272 in reply to sykgirl]

Hi sykgirl,

I posted about your experience with coding a couple of days ago and got a reply from a woman who works in the medical field in mainland Europe. I don't know her in person but she had the same rare condition I had and I trust her. I was disheartened that she told me that the two terms (ie FND and Conversion Disorder) are used interchangeably in many practices. That feels really wrong, to me. If you have enough spoons you could ask your new practice manager to contact the Neurological Alliance again on your behalf and let Prof Stone know about it too. Also I think your MP needs to know about what happened to you but you, or another constituent of theirs, would need to make contact with them about this. They could then let the MPs who attended the parliamentary event know about it. As you said, even if it is/was an isolated incidence, one misdiagnosis is one too many, especially when it was made by a computer. With any luck someone will be able to find the programmer and make the necessary changes. Hope you've recovered from that virus and are doing OK xx

[sykgirl in reply to 210272]

Sorry for the slow reply. I'm not having a great time of it healthwise. That is worrying! And totally wrong!!!! My local MP is a total chocolate teapot, and only interested in his career, not his constituents. I have no idea how to contact Prof Stone and very little energy atm. If you know how, would you mind doing it please? I am expecting an appointment through with my consultant soon, and will be sure to tell him, and once I know who the appropriate person is, my gp office. Hopefully Neurological Alliance will catch up with their emails and see the one I sent soon. Best wishes x

[210272 in reply to sykgirl]

I'm sorry to hear that you're having a rough time and about your MP. I can't contact Jon Stone on your behalf but your new practice manager should be able to do that for you, either via email or via his feedback form.

[sykgirl in reply to 210272]

Ok, thanks

[210272 in reply to sykgirl]

My pleasure. I see the neurological alliance are asking us to write to our MPs to attend an event where their petition will be handed in so it might be worth adding your experience to their letter and sending it to him (it's really quick and easy to do). He could get some career scoring points for taking action on your behalf, if only by attending the event. It's so, so wrong that this happened to you.

[kev60]

hi , my records show ataxia rather than FND . Ataxia was my first diagnosis and it has stuck and various GP’s are reluctant to change it, I find if another medic writes FND then they start to believe it. So I make sure whoever I talk to be it cardio or gastro or who ever that they know I have FND and write it in letters or notes and the GP’s will pick up on it. Although not ideal, just keep mentioning that you have FND and it will get on your records. Good luck in the future.

[sykgirl in reply to kev60]

Yes, I'm the same. I always have my diagnosis letter on me just in case. So sad we constantly have to advocate for ourselves. It's exhausting!

[Skylark11]

Thank you for posting this update, that's very worrying. I've been keeping an eye my records and, like @kev60, they only show the initial diagnosis of PPPD, not FND, despite having other functional neurological symptoms in addition to balance problems. But my consultant did refer me to Neuropsychology, and to see the FND specialist, so I was hopeful things would be clarified once I saw them. However, having been waiting many for months for an appointment, I have just received a letter saying that I do not match the referral criteria. I think this incorrect record might likely explain why! I am now no closer to getting specialist treatment than when my symptoms started.

[210272 in reply to Skylark11]

Hi Skylark11,

I'm sorry to hear of your recent experiences and hope you can get a useful referral soon. I am wary of the PPPD dx since even the researchers have tweeted comments like 'an imperfect or broad term is more clear and useful than none, as long as ppl understand it as such and are working to refine it' but as far as I can tell this isn't being imparted to patients or their doctors. Another tweet (from Prof O'Leary) was 'FND ed is terribly reckless, so practice is reckless' and I am aware that - like with FND before it - a PPPD dx can be given as a 'wastebasket' dx, based on normal test results alone. My wider concerns are that there was no patient representation in the FND Subtypes paper, why a dx such as PPPD (which isn't a psychiatric condition) has been lumped under one that is (IE FND) and what, if any, tangible benefits to patients will accrue from the 'territorial expansion' commentary from Kanaan (now mostly behind a paywall) which accompanied the Subtypes paper. I have requested a link to the 'red flags for when it's not PPPD' information, many times, but so far the powers that be haven't seen fit to respond which makes me wonder if their concerns about patient safety match those of patients, especially since there seems to be no easy way to record a misdiagnosis of PPPD (and the same applies re FND).

I don't have PPPD but I am aware that it is being over diagnosed and other conditions are being missed in the process, including Vestibular Migraine and Binocular Vision Dysfunction. The last ENT I spoke to about it said that he wouldn't dx PPPD unless he had to since 'it could stop other doctors looking for other things' but, having said that, it might be worth you contacting the lovely people at Cardiff University Dizzy Lab (CUDIZZYLAB,Org) who offer an online treatment for people with these symptoms. You don't need a formal dx to participate and people are paid to use the treatment app.

I hope you get the answers you need soon and can access appropriate treatment as swiftly as possible.

[sykgirl]

Sorry you are having such rough time of it 😪 What was a slow a demoralising system pre-covid not seems to have almost completely broken down. Hope you get dome answers soon 🤞🍀

[cocoferraro]

Hi beautiful

Its me!!!!i have read your email with great interest

forgive spelling etc as i am at a low at present

how do you get to look at your medical records so quick???

I want to do the same as you but have no means to look at my records, i have noted what you have said about the diagnosis, and this has now got me stiried up!! SO watch this space!

You have a lot of fight and courage and i admire you for that

best wishes xxxx

[sykgirl in reply to cocoferraro]

If you ask your gp receptionist she should be able to set it up and give you a code to enter online. It's like looking behind the wizard's curtain in Oz, you get to see what your gp writes after appointments, letters from consultants etc.

Best wishes

[210272]

Hi again, sykgirl and I hope you are doing OK. As you may know, the investigative journalist David Tuller is looking into the actual vs the reported prevalence of FND and is asking various journals to make corrections, where necessary. I still think what happened to you regarding coding was terrible and even if it was an isolated occurrence, people need to be aware of it. If you like, I can copy your post here and paste it into the comments under his recent blog. This would maintain your anonymity whilst supporting the need for complete transparency regarding these diagnoses and how they are coded.

Please let me know if you would like me to do this.

All best wishes.

[sykgirl in reply to 210272]

Sounds good, yes please.

[210272 in reply to sykgirl]

Done I did say that we weren't sure if this matter has been resolved so I hope that's OK. I still think Prof Stone needs to know about this, too, so if you have the capacity to copy and paste it into his feedback form on his patient facing self help site (neurosymptoms.org) it should reach his radar and you can do this anonymously.