Podcast BBC OU: The misdiagnosis that sent me to psychiatric hospital

Sly Saint

Sly Saint

Senior Member (Voting Rights)
transcript:
Academic consultants for The Open University: Dr Jitka Vseteckova, Senior Lecturer, School of Health, Wellbeing & Social Care and Dr Caroline Hyde, Tutor, School of Life, Health & Chemical Sciences

HANNAH: I have a very vivid memory of my GP saying to me: "You are mentally sick and you have to accept help to get better."
VOICEOVER: Hannah was a healthy 20-year-old psychology student living at home with her family when she started experiencing flu-like symptoms. GFX: The misdiagnosis that sent me to psychiatric hospital. Made in partnership with The Open University.
HANNAH: I went to my GP and I was kind of told that viruses will just generally go, you just need to go home and rest, take it easy.
VOICEOVER: Her GP thought she had glandular fever. Hannah was feeling very tired, so the symptoms fitted. But then she started to develop changes in her personality. Soon after, Hannah lost her ability to speak.
HANNAH: I had to ask my mum to come in, sit with me and talk for me to the GP. I would kind of write down to my mum what needed to be said.
VOICEOVER: Hannah was sent home with antidepressants and a referral to a psychologist. Her symptoms deteriorated, and she was soon admitted to a psychiatric hospital, where she was given antipsychotic medication. She was seen by a psychiatrist, who ordered an MRI scan. During the scan, doctors found a cyst on her brain and sent her to A&E for investigation.

HANNAH: When I got to A&E, they reviewed the cyst and said I was probably born with it, it probably had nothing to do with the symptoms. But what they did notice was that my blood test showed I was fighting some sort of virus.
VOICEOVER: More tests followed, and after three weeks, the results came back, and Hannah finally got her diagnosis: Anti-NMDA receptor encephalitis.
HANNAH: It's an autoimmune form of encephalitis, which is the inflammation of the brain. VOICEOVER: According to Professor Guy Leschziner, having your physical symptoms mistaken for a mental illness is not uncommon.

GUY LESCHZINER: We do occasionally see individuals with very severe psychosis and behavioural change in whom the initial diagnosis is of a psychotic illness like schizophrenia. But actually, over the course of days or weeks whilst they're in hospital, it begins to be obvious that actually what is underlying their condition is one of these autoimmune conditions. VOICEOVER: It's been known for more than a century that damage to particular parts of the brain and things like tumours can result in changes in personality or behaviour.
GUY LESCHZINER: But over the last 20 years or so, we've begun to recognise that there are a number of conditions that have an immune basis, whereby the immune system attacks the brain and causes changes to the functioning of that brain. In Hannah's case, it took several weeks for doctors to recognise that this was a serious autoimmune condition that required treatment with very heavy-duty drugs.
HANNAH: I was moved to neurology ward. I was completely mute and I had lost the ability to dress myself, wash myself, feed myself. So I really was trapped in my own body at this stage. VOICEOVER: Hannah underwent immunotherapy treatment and had 13 plasma exchanges – a process of filtering blood before pumping it back into her body. Although the treatment didn't work initially, and her parents were told by doctors she probably didn't have long to live, after two weeks, Hannah woke up.
MOTHER: Hannah, say "Dad". HANNAH: Dad.
VOICEOVER: Over subsequent weeks, she learnt to speak again and walk again. She says it was like learning how to live again.
HANNAH: I look back at the person before I got encephalitis, and I don't really know her. I just can't connect with that person.
VOICEOVER: Five years on, Hannah has mostly recovered, though she is still on immunotherapy treatment, and that makes her more vulnerable to infections and could impact her fertility.
HANNAH: I wish GPs would know more about encephalitis, because they're the first point of contact for a lot of patients. I wish my GP knew more about it, so she could direct me to the right pathway. If I was to think about all the people who had encephalitis and died in psychiatric hospitals or care homes, I wouldn't be able to sleep at night.

VOICEOVER: In Hannah's case, a physical illness, encephalitis, was mistaken for mental illness. But sometimes it's the other way around.
GUY LESCHZINER: We know that the connection between body and mind goes both ways. Physical problems can result in psychiatric symptoms, but also psychological issues can contribute to physical disease.
VOICEOVER: Professor Leschziner says he sees patients who have symptoms like seizures, paralysis and numbness with no obvious physical cause. Some are eventually diagnosed as having functional neurological disorder, or FND, which is a problem with how the brain receives and sends information to the rest of the body.
GUY LESCHZINER: We don't fully understand what causes these conditions. It seems that anybody can be vulnerable to changes within the software that defines how our nervous systems work. We know that there are some risk factors. So stress, anxiety, depression, previous psychological trauma in particular. But ultimately, anybody can develop these functional neurological disorders.
VOICEOVER: Globally, hundreds of thousands of people develop FND every year. Conditions like FND and the experiences of people like Hannah have led some doctors to believe that we need to stop thinking of mental and physical health as separate.
GUY LESCHZINER: I think we need to move away from defining diseases or disorders as of the body and of the mind. We know that actually, in almost all cases, there are contributions from both. Even in conditions that are thought to have a pure physical basis, we know that how people interpret their symptoms is important in terms of defining their quality of life and how severe they perceive their symptoms to be. So actually understanding that, making sure that everybody has access to both physical and psychological treatments is really of utmost importance for pretty much every condition that is seen by our healthcare systems, and is important for everyone.
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https://www.bbc.co.uk/ideas/videos/the-misdiagnosis-that-sent-me-to-psychiatric-hospi/p0dqf3km
 
Amazing how in discussing a massive, potentially life threatening psychiatric misdiagnosis, this psychiatrist includes all the FND stuff.... which can only lead to MORE instances of such misdiagnoses. Sometimes i wonder how something so utterly bizarre is so commonplace & accepted.
 
 
Andy said:
Leschziner crops up on a few threads here,

Pushing FND, Phantoms in the Brain - BBC radio programme on 'Functional Neurological Disorder'

and in these as well
Autoimmune Encephalitis - Overlap of symptoms with psychiatric diseases
BBC World Service programme on senses - woman who lost balance when closed eyes, etc.

He's also a member of the CODES study group, Cognitive behavioural therapy for adults with dissociative seizures (CODES): a ... multicentre, randomised controlled trial (2020) Goldstein, Chalder
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I'm amazed at how they made that acronym work. It shows real creativity. Their talents are lost doing science, they should be writing poems or something like that.
 
Solstice said:
I'm amazed at how they made that acronym work. It shows real creativity. Their talents are lost doing science, they should be writing poems or something like that.
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This shift from science to literature is not a new thing. It was central to Freud’s journey from neuroscience to psychoanalysis. He became very frustrated at the failure of contemporary neuroscience to explain human behaviour, in deed in his monograph ‘On Aphasia’ he raised problems with the little box approach to neuropsychology that had not been fully dealt with today. However his ‘solution’ was then to reject the scientific method and indulge in creative myth making. And FND is part of our generations continuation of this creative myth making. Unfortunately these myths can speak to us on an emotional level that then sees people connect to them such that objective scientific analysis is thrown out of the window.
 
Sly Saint said:
transcript:

https://www.bbc.co.uk/ideas/videos/the-misdiagnosis-that-sent-me-to-psychiatric-hospi/p0dqf3km
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Well that is a switch-and-bait as well as reverse logic. So the story proved that even if someone thinks the cause might be psychological this story shows they were incorrect.

How on earth someone has the gall to use it as something to illustrate the opposite is true - for which they have no evidence, and this sort of thing should act as a warning against assuming (note: if it wasn't for A&E then she wouldn't have been treated correctly necessarily by the other depts she went to) 'it's nothing ergo it is psychological'. Firstly there is no proof if you find nothing it is psych, secondly those who do this tend to be the least bothered about and laziest at actually looking.

How is this ending up instead of a warning of the near miss potential consequences these lazy or deluded people could cause have they got the rudeness to use it to push their 'fake cover story' as to why they don't?

Oh because noone calls them out - no public outcry, you'd think most of the public reading this must rub their eyes at some point and think 'hang on' and read back to how the ending ended up being the opposite of what the 'moral of the story' was supposed to be. And is happy not to call these people rotten and make them sit there and imagine the implications they might cause and expect intervention against such casualness towards that happening to someone else? Or just not aware of the fact yes if it sounds like non-sense it really truly is, and is down to them to question it in order for things to be pulled up?
 
Andy said:
Leschziner crops up on a few threads here,

Pushing FND, Phantoms in the Brain - BBC radio programme on 'Functional Neurological Disorder'

and in these as well
Autoimmune Encephalitis - Overlap of symptoms with psychiatric diseases
BBC World Service programme on senses - woman who lost balance when closed eyes, etc.

He's also a member of the CODES study group, Cognitive behavioural therapy for adults with dissociative seizures (CODES): a ... multicentre, randomised controlled trial (2020) Goldstein, Chalder
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If only I thought it was a journalistic technique happening - where they get people on record talking about what they do, before it all comes out the consequences or potential consequences and implications of such things (in order that it then can't be denied that was how they treat people etc). But noone in the public seems to even see it when it is played back as history on a video or recording and isntead listens to the rewriting of history.
 
It is so very wrong that early in diagnostic and treatment investigations, thoughts turn to psychological problems.

Why bizarre symptoms and behaviour don't promptly bring MRI brain scans to mind is not a mystery, as the go-to bias is often to blame the patient. A very sad state of affairs.

MRIs are expensive, but so are weeks and months of psychological intervention that obviously isn't the answer in innumerable cases.
 
DokaGirl said:
It is so very wrong that early in diagnostic and treatment investigations, thoughts turn to psychological problems.

Why bizarre symptoms and behaviour don't promptly bring MRI brain scans to mind is not a mystery, as the go-to bias is often to blame the patient. A very sad state of affairs.

MRIs are expensive, but so are weeks and months of psychological intervention that obviously isn't the answer in innumerable cases.
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MRIs aren't that expensive - a few hundred £ upwards. It sounds like it was blood teststhat found this? Some Psychiatrists can charge more for a single appointment, and I believe even in 'cost effective' therapy it has to be bought as a course, and the guidelines costed e.g. CBT in the £ thousands. Or even worse if something gets to worse stages - I've included at the bottom with trigger warning some articles from a neurologist and 'his process' when faced with someone he isn't sure vs the approach of A&E in the article above make for a contrast that need to be made. And discussed.

But also with the description of where this woman's symptoms were headed I couldn't help be reminded of this/these (are they the same person) article(s) and wonder if one were before the other after being missed/examples the difference in approach of different depts. We never get full lists of 'rule outs' other than a presumptive line 'everything was ruled out' from neuro or psych in many of these articles. These could well be entirely different things, but how do these different departments work for us to know that is either the case or that one couldn't be looking in different places etc

People do need to begin calling out the money - and most importantly where/who it is going to. A waste is a waste and whether it is £ x, y or z million going towards these people and treatments that don't help and do cause delays that cause harm, and misinformation and mislabelling that cause harm they are expensive ways to cause more trouble for patients - in fact any £ spent on such is pure waste (not help) if it is wrong as far as the patient and the overall system goes.

I do not think it is helpful to our cause to pretend anything these guys do involves no money being spent, or call it 'cheap' - they are not doing it out of charity. The way that supply-demand is worked it means money that could be going on needed things ends up at things that aren't if x% of patients are going to the wrong place. Making the supply from the right place at the right time be even more out of kilter with future demand.

And that needs to be underlined along with just how much is swilling around under these categories. Even if it were cheaper - say can only afford to treat 9/10 people right, but can treat 10/10 people wrong and put them back many years if they don't end up with permanent issues (I suspect it will leave permanent and unnecessary issues, it just depends what they want to 'count' towards that).

But a google of Anthony David who is in the articles below, brings up the following Trial by Error article showing he seems to habitually have been mis-citing an article on MUS, specifically around its costs, despite having been written to about it prior: https://www.virology.ws/2021/04/26/...inal-study-of-medically-unexplained-symptoms/




TRIGGER WARNING NEEDED HERE I'M AFRAID
Even worse you get this: https://www.thetimes.co.uk/article/...ing-you-physically-ill-is-your-mind-wrv8q3f89
I note that this has been amended I'm pretty sure since its first publication (I strongly remember this guy wrote an article where he claimed he'd put an ME patient thru ECT and it was duly amended), and it doesn't note the ending on this now

- and the next article from the same person about 1 week later sounds remarkably similar but was 'a patient with depression' (put thru the same thing) but seems to have the similar ending to what I remember was on the ME bit. In which case it rather shows how even more problematic their 'storytelling/anecdote' approach is if it is the case that these were one and the same with endings left off and/or conditions adapted by piece.


A junior doctor was assessing Emma, a woman in her early twenties. She had become ill in her teens, with a virus maybe, which her family believed had spiralled into myalgic encephalomyelitis (better known as ME) or chronic fatigue. Soon she was too tired to go to school and then too ill to walk. The deterioration was rapid. As the years rolled on she had violent fits, then became immobile and needed to be tube-fed...................

First, what is this mystery? Even [Anthony] David, at the forefront of diagnosis and treatment, struggles to put a name to it. Doctors used to call it “conversion” or “functional neurological” disorders, or just lump it as “medically unexplained”.

“You find yourself scrambling for a term, but there’s nothing good. You can talk about organic and non-organic, or psychiatric and non-psychiatric illness, but that’s not a useful distinction. The difficulty we have with the terminology is because of its complexity. It’s not mind or body; it’s both.”..........

David’s book discusses some other kinds of mental illnesses too, but a large chunk of it answers O’Sullivan from the psychiatric side. “We’re meeting in that no man’s land, or you could say that common ground,” he tells me. This is where the solution to this kind of disorder lies and David broaches new treatments, which can be experimental.

In Emma’s case, after every test came back negative, electric shock treatment was given under general anaesthetic. It worked, for a while. Emma was, briefly, able to walk and talk after electroconvulsive therapy (ECT) sessions.

More typical is highly specialist “neuropsychiatric” rehabilitation of the kind that, given the scale of the problem, needs to become vastly more widespread.
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https://www.thetimes.co.uk/article/into-the-abyss-by-anthony-david-review-nx6q0gts9

That’s what Professor Anthony David does about halfway through his new book on psychiatry, Into the Abyss. David, a long-time practising neuropsychiatrist and director of the UCL Institute of Mental Health, describes a case study, a young woman who had been in a catatonic state, linked to severe depression, for more than a year. There was no physical injury or impairment; no obvious cause for the severity of her condition. All attempts at treatment had failed. As a last resort, David and his team turned to electroconvulsive therapy............

...........Does it work? That depends on what you mean by “work”. For David’s patient, it had near-miraculous effects. She had been unable to move, even to swallow, and had to be fed through a tube. As David puts it, she had been “sharing a ward with people in a persistent vegetative state, people with massive brain injuries, and could have passed for one of them”. But after a few sessions of ECT, she woke up. She opened her eyes, drank a glass of water and held a conversation with her doctors.

It was an incredible recovery — but it didn’t last. After each session she was only “awake” for a short period, with its duration becoming shorter as time went on. Eventually, she returned permanently to her stupor.

Why did the ECT have this amazing effect? Why did its benefits fizzle over time? What exactly had happened to the patient’s brain, before and after the treatment? As David says, we simply don’t know. ECT often has a powerful effect in the short term, but the longer follow-up studies — which are relatively few because they are so difficult — show much weaker evidence. This is the “abyss” of the book’s title;
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OK just found there is a thread on the first of these here https://www.s4me.info/threads/uk-times-what-if-the-thing-that’s-making-you-physically-ill-is-your-mind-feb-2020-rumbelow-includes-me.13601/
 
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That was ridiculous. I'm still trying to understand this seque from anti-NMDA encephalitis to FND. It was like watching a documentary on lung cancer, where two thirds of the way through the doctors start describing how lung cancer causes smoking.

I bet poor Hannah was horrified to see how they derailed her story.


"A Documentary About Misdiagnosis"

Voice/over: Meet Hannah who was told she had a mental illness and nearly died, but in fact had an autoimmune condition that was treatable.
Patient: I was told I had a mental illness and nearly died, but in fact it was an autoimmune condition that was treatable. I now live a near normal life.
Neurologist: Well akshully - many people don't have physical diseases at all, it's really all psychological you see.
Patient: Umm... help? They're doing it again.
 
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I am so sick and tired of recent and fairly recent publications on ME/CFS, Long-Covid, and similar diseases throwing in the words "depression," "anxiety," "biopsychosocial," and making them more and more prominent in current discussions of these diseases. And now the terms FND and MUS are getting thrown into the mix as well. That was not the case originally and for years when all of us (patients, doctors, researchers, the media) were dealing with these diseases. In fact, the CDC has always stated that ME/CFS patients do quite well in the mental health domain. Pioneer doctors in the field have also expressed the same observation and opinion.

Having suffered from ME/CFS for over 30 years and having put up with much misunderstanding and disbelief from those around me, I am quite proud of the fact that through it all I have maintained my sense of self and good mental health in spite of being quite ill. And I don't believe I am the only ME/CFS patient who has done so. Carol Head, the former CEO of Solve ME has called us ME/CFS Warriors. And I believe she is right.

The increased infiltration of these terms into ME/CFS and similar disease literature seems to me to be a more recent phenomenon. I can't help but think of Joseph Goebbels of the Nazi regime spinning out his propaganda in order to indoctrinate and influence people of his time. Is the same sort of thing happening now in an attempt to tie "poor mental health" to these diseases in the minds of the common man and fellow doctors in order for the BPS brigades to keep their control over these issues, preserve their reputations, and maintain their CBT empires? Is this part of the pushback fallout from the recent publication of the new NICE Guidelines for ME/CFS? Is spreading confusion and uncertainty part of the plan? The way the terms "depression" and "anxiety" are thrown around, I don't even know what their meanings are anymore. And the way "biopsychosocial" is spouted in so much current literature, it seems to me it is just thrown in to make the authors seem current and up to date, even if it doesn't add anything to the discussion or understanding of these diseases. All it does is turn me off. How in the world did we get to this point? More importantly, how do we get out of it? Frankly, I don't think the answer lies with more psychology or psychiatry. I think we have had quite enough of both, thank you.
 
NelliePledge said:
Yes something of a Trojan horse for FND……..
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So, really, on a report about medical misdiagnosis, they promote misdiagnosis central? The very thing that made her misdiagnosed? This is like a chain-smoking doctor talking about lung cancer and enjoy how the smoke goes so smoothly down their throat. WTH?

Good grief we are in the worst possible hands, this is madness. It's like our oppression isn't just OK, it's basically promoted and marketed as good, basically entertainment. This is morbid as F.

We seriously cannot depend on these people, we have to do it all ourselves, they're simply incapable of it.
 
Willow said:
Having suffered from ME/CFS for over 30 years and having put up with much misunderstanding and disbelief from those around me, I am quite proud of the fact that through it all I have maintained my sense of self and good mental health in spite of being quite ill. And I don't believe I am the only ME/CFS patient who has done so. Carol Head, the former CEO of Solve ME has called us ME/CFS Warriors. And I believe she is right.
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The most interesting and pertinent fact about the psychological profile of ME patients is that we are not stark staring raving mad after the way we have been treated by medicine and society.

The only significant psycho-pathological features we have, to the extent we have any, can all be explained as the drearily predictable generic secondary and contingent consequences of decades of this appalling mistreatment and brutally trashed lives.

How often do you see the extraordinary fortitude and resilience of patients, under such appalling provocations and burdens, seriously and honestly discussed in psych papers?
 
Sean said:
How often do you see the extraordinary fortitude and resilience of patients, under such appalling provocations and burdens, seriously and honestly discussed in psych papers?
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Ah, but that would need a psychologist who hasn't been drinking the Kool-Aid. Who of course would be ignored by the rest, because...


Seriously, though, it's an excellent point. Though I do half-imagine someone seeing us surviving, largely psychologically intact, and asking what on earth is wrong with us that means we can do it!
 
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