KerenL
@KerenLL
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Freelance writer. Regular contributor to the Guardian. Lover of open water swimming. And of Greece. Likes pools that aren't kidney-shaped and far horizons
London, England
Joined February 2011
At time Invariably wrong symptoms Invariably wrong nature of symptoms Invariably wrong location of symptoms Invariably wrong order Invariably wrong priorities Invariably wrong urgency Invariably wrong department
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Would add ‘despair’ to list once comes to not being believed repeatedly or to being referred for what definitely not the symptoms This can be stuff of and reason for total despair, because where can you turn if you are having to start over for what aren’t even your symptoms
They are all common reactions to a medical misdiagnosis also They are all common reactions to not being believed, even about what issue and symptoms and pain definitely not and not at all like This point continues to be made much less often
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Well patients love(d) their health If the patient and patient input isn’t part of the equation then is not so much even a power gradient as disqualification of patient input in presence of clinician’s
@KerenLL Narcissists love their power gradients. It's what they live for. Ridiculous to think they wd give them up. All unscientific business school-style narrative.
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Have posted it before but think the issue (to put it generously) can be when eg patients’ distress (eg at not being believed about symptoms) is pathologised while the symptoms are not Worst of all worlds Either is a horrible experience but both is terrible
And there are instances, in the absence of any related action having been taken and of hearing this, in which eg ‘very real pain’ borders on being insulting As ever am not sure why am saying ‘borders on’. It just is
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And there are instances, in the absence of any related action having been taken and of hearing this, in which eg ‘very real pain’ borders on being insulting As ever am not sure why am saying ‘borders on’. It just is
They are all common reactions to a medical misdiagnosis also They are all common reactions to not being believed, even about what issue and symptoms and pain definitely not and not at all like This point continues to be made much less often
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They are all common reactions to a medical misdiagnosis also They are all common reactions to not being believed, even about what issue and symptoms and pain definitely not and not at all like This point continues to be made much less often
All medical conditions have a psychological overlay, the extent of which varies between people. Saying this does not mean that a condition is “all in the mind” or “not real”. Anxiety, fear, depression, anger, frustration and grief are all common reactions to a medical diagnosis.
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There can be a whole language to defensiveness which means patient is asking one thing and clinicians answering completely different question It’s not an exchange, not communication and not collaboration Same applies to what ‘recorded’
@davidgcant Sadly now I do
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Always think what clinicians actually mean rather than what they say that counts most These not necessarily always same thing And eg terms like ‘unexplained’, ‘FND’, and/or ‘psychosomatic’ can be said with a finality which signals the end of the road in terms of related care
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In any area of healthcare would say, as patient, that a significant (and much more often than acknowledged) aspect of importance of related tests and related action being taken on symptoms is what they can come to be called in absence of these As ever, applies to NHS and Private
A year ago today I was diagnosed with FND by a neurologist who knew nothing about long covid. Reasoning: no blood test abnormalities I now have blood tests showing I have raised Arginase 1, HIF1a, PINK1, and Activin B Amazing what shows when you actually test relevant pathways
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These And a defensive medical environment By its nature this one can come to be mentioned least
Certain situations can raise the risk of medical error Being aware & sharing them (e.g. during a team briefing) can help build individual & team situation awareness Here's a table from our new paper on Human Factors & teams in the digital era Will post a link when published
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Interesting to hear it said this morning, about AI, that it can be considered that ‘innovation and safety cannot coexist’ There were times when as patient could have applied this easily to my experience (As always in this NHS and private equally)
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Defensive medical environment can be death knell to curiosity
Oh yes As worsening patient discovered what could be an almost stunning absence of curiosity in The System To be curious can require belief, or at the very least an open mind Felt at the time as if this was close to not allowed And exactly the same within NHS and Private care
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Oh yes As worsening patient discovered what could be an almost stunning absence of curiosity in The System To be curious can require belief, or at the very least an open mind Felt at the time as if this was close to not allowed And exactly the same within NHS and Private care
@ProfFeynman I think the quote is attributed to Isaac Asimov where he explained breakthroughs often come not from sudden flashes of genius but from curiosity about unexpected results.
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RT @ProfFeynman: The most exciting phrase in science isn’t 'Eureka!'—it’s 'Hmm, that’s funny...'
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Never think an apology ‘for any offence caused’ an apology really Not about politics Apologies are ‘active’
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Including clinicians in different depts and disciplines collaborating with each other This could not be more different from eg referrals. Once worsening patient referred from one dept to another, let alone to completely unrelated clinicians, can be as if never existed in first
Oh yes And have posted that much as social media maligned it can be one of few places eg patients and patients, patients and clinicians, clinicians and clinicians can be in contact with each other, nationally and internationally And there are ‘real’ clinicians here, too!
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Oh yes And have posted that much as social media maligned it can be one of few places eg patients and patients, patients and clinicians, clinicians and clinicians can be in contact with each other, nationally and internationally And there are ‘real’ clinicians here, too!
Collaborative research between countries accelerates medical advances while international partnerships can help address underlying health determinants such as poverty and climate change. By sharing knowledge, resources, and funding, countries strengthen preparedness, response capacity, and resilience to future health crises.
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In this context suggestion of CBT is another way of saying 'we are not listening to/hearing what you are saying and/or why you are saying it' There are many ways, all of which can sound polite and reasonable, but they are not This is not to say CBT is not relevant in some circs
As patient would say where recommendation of CBT comes with assumption specific physiological symptoms either not happening or determined by way of thinking/feeling can be immensely damaging No amount of CBT going to tackle teeth becoming serially necrotic and nothing being done
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As patient would say where recommendation of CBT comes with assumption specific physiological symptoms either not happening or determined by way of thinking/feeling can be immensely damaging No amount of CBT going to tackle teeth becoming serially necrotic and nothing being done
@BadreNicolas Agree I see CBT a first step that (almost) everyone could benefit from. It helps people in general to think that feelings, thoughts, body sensations and behaviour are linked. Some need more than that and after going through CBT, but some won’t, or not now.
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