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. My GP of 27 years recently retired and my doctors surgery has merged with another, so I now no longer know any of the GPs, and they don't know me. I went to check something on my online medical record this week, 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 can see they have now changed it to " Psychogenic Conservation Disorder ". I have never been diagnosed with Conversion Disorder. Whoever changed my record has never met or assessed me, and yet has unilaterally changed my diagnosis without consulting me or telling me. Has this happened to anyone else?
Thanks
UPDATE: I have just had a long conversation with the practice manager at my surgery. It transpires that something more insidious is afoot. Apparently 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'm going to create a separate post warning other people in the UK to check their records.
Thank you so much to everyone who took the time to reply!
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sykgirl
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Whisper the word "malpractice" in their ears -- you don't have to believe it; they are very sensitive to the idea -- don't be shy of getting a lawyer to play on their sensitivities -- might cost you a hundred bucks to put on the show ("a lawyer's time and advice is his stock-in-trade"); again, just to touch their worry button.
Hey Sky,
I will start, reading this.. I am so sorry for you and have such anger and wish I could physically be there, sit down with said Dr, and be as critical at what on Earth made them think without consulting a patient.. without knowing anything.. Gave them the idea to do somethibg as damaging as that to a person. Whether you know that or not, that is horrendous.
My suggestion, which is based off of US rights (I'm not sure where you are from. I'm not stating this to say you are different. I'm saying it because I want to make sure you know where I'm from and you may have other steps in your processes that is based off of rules and laws in another country.)
My suggestion, get your medical record and immediately find a new GP. State to them that you were diagnosed with something many years ago by a TRAINED NEUROLOGIST. Not a GP. That the record wad changed by a Rabdom GP that you have not met. Due to this lack of care for you (as a patient.) You refuse to have such disrespect and unprofessional work be done that can and will cause damage on my life. Potentially not allowing me treatment to live, not allowing me to work, or even be able to function correctly
Both motor loss and cognitive loss.
Make your New GP listen with their ears not their mouth. If they feel that the diagnosis is correct, you ask them why rhey would think a trained neurologist of decades is incorrect based off of their knowledge as a GP, that lacks any understanding or knowledge on neurological disorders that require expert diagnosis and treatment that are beyond their scope of work and experience.
I'm typically not this aggresive with responses. I care so much about Biomedical that reading the absolute disregard for human life that GP has... I cannot imagine.... I wish you the absolute best. If you need me or anybody, please know making a post we will help. The community here is astounding. We help each other in many ways.
Feel free to look at my former posts, message me, anything you need to bather information or get help. We are a team here, Sky. We are here for you.
The problem is that FND is still found in the DSM Version 5 (Diagnostic and Statistical Manual of Mental Disorders). The DSM V is used to diagnose psychiatric illness. The only change between Version 4 and the current Version 5 is that the term “Functional Neurological Symptom Disorder” was added in parentheses after the DSM-IV term “Conversion Disorder.” In the DSM-5 the terms are reversed so that Conversion Disorder is in parentheses. So FND is co-titled with Conversion Disorder. While the requirement in DSM IV for psychological factors to be present has been dropped in DSM V, its very presence in the DSM keeps it as a mental disorder. DSM V came out in 2013.The DSM is an American publication. The European one is the ICD Version 11 (International Classification of Diseases) and is produced by the WHO. There has been something of an improvement there for FND, in that in Version 10, FND was classified exclusively in the psychiatric section as dissociative (conversion) motor/seizure/sensory disorders. In the ICD 11 FND appears within both neurologic and psychiatric categories. In relation to FND as a mental health problem, it's titled Dissociative Neurological Symptom Disorder. I don't know how it's worded in the neurologic section. Version 11 was released in 2022.
However, I don't think use of ICD 11 has been mandated for use across the NHS England. I think NHS Scotland has only introduced ICD 11 for mental, behavioural and neurodevelopment issues. Don't know about NHS Wales and NHS Northern Ireland. I believe that the expectation when ICD 11 was adopted, that countries would start planning for transition.
That would appear to leave FND as classified by ICD 10 - a psychiatric disorder.
As you were diagnosed under ICD 10, I wonder if your neurologist avoided the conversation about causation of your very real physical problems.
Given all this I'm not sure what you can do with your GP. The term 'functional' is still fraught with stigma - there are posts in this forum discussing that problem.
Current medical leaders in the field of FND simply want us to stop thinking in what they see as a 'dualist' way - a divide between brain and mind. But that seems to be an easy way for them to avoid saying medicine has yet to identify the cause. In essence, we are not to concern ourselves with physical cause versus psychological cause. And the term functional serves as a handy shortcut for them and yells at full volume to any other medical profession that our disorder is psychological. But we should concern ourselves in our own disorder and one where we are very clear has no psychological context.
Thank you, that's really helpful. I'm UK, so that is relevant. I thinking of writing a formal letter and providing peinted evidence. My diagnosis letter clearly states that I got FND following a virus, and was predisposed due to previous glandular followed by CFS and Hemiplegic Migraines. It also states that whilst some functional neurological disorders have psychological causes and mine doesn't, not all do, so couldn't be clearer! Thanks for your help 🙂
Hi There, I believe that you should contact your local Healthwatch and ask the surgery for specific medical records with the important dates and show the letter the neurologist sent to your then GP when you were diagnosed. Healthwatch can help you or actually formulate a formal complaint to the practice and can do this via NHS England. You can put the concerns there that you may in future be treated wrongly and that this is precarious for your overall health and that the practise could fail in their duty of care to do this safely. You could alao ask for an apology. It's appalling how a GP can be so arrogant to change the diagnosis and it shows an opinion without qualification as a Neurologist - these sometimes Demi- Gods eh! You are entitled to know also who did this and why and see the input on the notes on their computer system! Freedom of information and subject access records - medical. Then when the complaint is made you can avoid this GP. Perhaps now look up who works at the practise to see how they are qualified. Perhaps call your neurologists' secretary and discuss this with them at an appointment and ask for their support. You could also go to the CQC and report and this will affect the rating of the new practise if the practice fails to see your side of this and ammend the records. They are usually so defensive in these cases so pre-empt a response especially now with the NHS. Maybe its good to move practice and find a decent GP and register with them explaining the circumstances as youv'e lost trust in the present GPs lack of patient centred care and due to malpractise. GPs these days believe it is still acceptable to just be cyber GPs without seeing patients and this is a classic case of them just seeing you as An other and nor a person. If you see a GP there then I would advise you take a witness as the NHS is all about damage limitation to themselves when even there are horrendous circumstances . Healthwatch can help but Im sure you will know that they may just perceive that you've taken it personally and may not see it as important and not prioritise as most know little of FND. The stress involved here needs to be considered and its important to have a clear diagnosis on record - historical or up to date. Sadly, people still don't know and are fearful of Neuro' illness as we all know. Do you have a local Neuro support centre nearby who can help. Perhaps information from Neuro Symptoms and FND charities and sending them to the practise and healthwatch could help this could be done even anonomously. It's important for us all not to be margionalised and when the condition as it is presently decribed within medicine as Functional or Neurological then its so important that GPs do what their more qualified doctors tell them with any treatment. The GP who did this needs to be told where it stands - well and truly! Ignorance and arrogance at its worst. Sadly it goes on all of the time. Very best wishes
I agree with Patrick that you would be wise to consult a lawyer.
The issue is that in the past people with concussions or FND symptoms were saddled with conversion disorder and put in the psychiatrict bucket.
In more recent times, doctors who are up to do date now understand FND and concussion are physical disorders. However, if you look it up, some of the websites say FND (conversion disorder) because they don't get it.
Do you have a copy of the original letter? You could try taking it in to the office and showing it to them and asking why your records have been updated with out consultation, and you wonder why your specialists diagnosis has been overturned? Of course, it is, in my opinion, good to consult a lawyer first because they know the official step by step of things, and may give you some words to use, or may suggest they write a letter.
My guess is what happened is the new people don't know what FND is, looked it up, and got incorrect information.
Hopefully the neurologist you saw is still practising in case you need to go back and get a confirmation.
It's turning out that getting FND recognized is a real battle, a lot of parts of the system don't want to give up associating it with the conversion disorder label. My feeling is some of this comes from the insurance industry, because they don't have to pay as much for psychological issues as they do for physical ones.
Brain injury (concussion) recently was moved out of the psychological section of the diagnostic manual into the physical side, where MS , Parkinsons, etc, live ... and FND belongs there, too.
Do look in to what you can do educate them. You need that taken off your record if there is any way you can.
(Where I live a bunch of folks with brain injuries are walking around with a bi polar diagnosis because of how the brain injury influenced their emotions - they don't have bi polar, but because the medical people they were assessed by don't know any better, that's what they got.)
Yes, they do what they want in them charts whether it is true or not. They have definitely made mistakes in my chart not one , some mistakes.Im in the US though.
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