KerenL

@PFMDwithPatient @ptsafetylearn

As ever, good to see teeth included in body and ‘rest’ of healthcare

So much can come (particularly in absence of related measures and action) to be categorised as 'invisible illness' Is it what you can't see, or what you won't see, or what doesn't 'count' but is in fact highly visible - in that person As always in these, across both sectors

@Daisychain100 @BBCr4today @amolrajan @BBCSounds Indeed And eg ‘Unexplained’ when it’s in fact ‘not sufficiently represented on the tests for our preferred diagnosis’ can function absolutely as a label, for as long as it lasts The patient can have symptoms before research catches up with what they described in first place

@BBCr4today @amolrajan @BBCSounds It also ignores the much bigger problem of delayed and missed diagnoses that could be treated stopping people from living the lives they wish to.

“When you turn someone into a patient, they can begin acting like a patient” Dr Suzanne O’Sullivan, author of 'The Age of Diagnosis', argues that the costs of a medical diagnosis can sometimes outweigh the benefits. Listen to Radical with @amolrajan on @BBCSounds

@Daisychain100 @BBCr4today @amolrajan @BBCSounds So glad someone said this When I reported symptoms at time I would be told not only what clinicians meant (although understood this 1st time) but also what I meant. I meant what I described Clinicians working ‘with’ patients can be everything The infantilising is terrible

@BBCr4today @amolrajan @BBCSounds This is silly because it assumes how a patient behaves is determined by their diagnosis rather than their symptoms as if patients can't think and experience for themselves.

@RslewisSally Absolutely And find where ‘human’ healthcare begins to sound automated easily as alarming as the less positive aspects of AI

There seems to be an increasingly prevalent view that the art and practice of medicine can be reduced to a series of tasks and algorithmic decisions. It cannot. The art of medicine is not just about knowledge acquisition or technical skill.

@DocEmUK @ApingSpring @132ivan Think knowing what is usual for a person and what isn’t and this kind of ‘translation’ can have almost unquantifiable value

@132ivan I know my patients well enough to know when ‘OK’ means OK and when it means ‘I’m trying but really bloody struggling’. AI doesn’t get that.

I want to be the GP who is invited to family funerals. I want to be the GP who is contacted when postnatal depression hits. I want to be the GP who is consulted as a reliable person when illness strikes and information is confusing. I want to be the GP who is trusted to advocate for patient need. I want to be the GP who is worth waiting to see. Stand with us if you want this too. Resist the Amazon Prime mentality. Support our challenge against the new contract which favours access over quality. Support us in our actions towards having time to care.

@Azeem_Majeed 👏

A better title for this paper would be “Caring for Children With Sepsis”. The shift from "paediatric patients" to "children" isn't just a matter of semantics; it’s part of a broader movement toward the use of person-first plain language in medicine. jamanetwork.com/journals/jama/…

@sunsopeningband On 'do no harm' fear can come to be case inaction and 'Safety' represented as same thing Particularly in a defensive medical environment But have to say even worse where unilateral decision made re 'best interests' of patient. Wish this weren't 'edgy'. It's 'very' patronising

This kind of thing seems edgy and it generates clicks and book sales but it’s over the edge. This physician’s core ideas fail basic biomedical ethics, violate her oath, and probably go against her license. The first obligation is to do no harm. Withholding information isn’t that.

@LongCovidAdvoc Yes, am very aware that's what they mean If that is aim afraid it fails and not only because immensely patronising, although it is, but any hope for related care, even related research Great care can happen where 'Trust the experts' and 'You know your own body' allowed to meet

@KerenLL Most psychologisers start out with the premise it's 'real' - what they mean is the symptom perception are real but not the organic illness. It's classic bait and switch to not seem a total a**hole!

Time to share our article on patient shaming doctors like O'Sullivan (again) A classic example of failing upwards to justify state abnegation of responsibility. longcovidadvoc.com/post/the-suzan…

Should probably have said presumptions as well as assumptions

@JDaviesPhD At least two big assumptions in that quote alone

"An Overdiagnosis Epidemic Is Harming Patients’ - Mental Health. Diagnosing patients when there aren’t effective treatments to give them can make their symptoms worse, argues neurologist Suzanne O’Sullivan." wired.com/story/wired-he…

For every patient who ‘insists’ there can be many who have had to

@StuartSmudge @BBCr4today @amolrajan @BBCSounds Not having been believed or represented in what you are actually describing, or why, as a worsening patient, can change you also, and much more even than your health And can only hope there is a diminishing number of people who confuse ‘very real pain’ with belief

@BBCr4today @amolrajan @BBCSounds Its an important point in my view as a patient. Post diagnosis there is a tendency to kind of hide behind it almost. Once you let that diagnosis define you, it can change you. Its always concerned me that it could hinder some. Resilience becomes our greatest tool that we use.

@StuartSmudge @BBCr4today @amolrajan @BBCSounds You can say as easily that clinicians can hide behind eg quoting stats ‘Patients can suffer X’ next to useless when patient has Y Misdiagnosis was mentioned but not centrally and not explicitly where ‘psychosomatic’ ‘is’ the misdiagnosis

@jomarshall111 @BBCr4today @amolrajan @BBCSounds Having had serial teeth becoming necrotic and the need to repeat this (not heard first 20 times, and ‘while’ worsening) captured at time as ‘MonoSymptomatic hypochondriacal psychosis’ can relate It’s so so not ok to do this

@BBCr4today @amolrajan @BBCSounds I wouldn’t mind this comment so much if I didn’t know that she’d made the assumption that long COVID and ME patients were psychosomatic patients which is frankly, in my view, unforgivable . So many suffering so desperately and all they want is diagnosis and treatment

It can be helpful (to put it mildly) where eg what is usual - for that person - and what really isn’t is heard (not humoured) by clinicians Sometimes it is And sometimes you’re told it doesn’t ‘count’ Clinicians working with patients can achieve more than either solo

@1goodtern Indeed And ‘data’ a word bandied about so often Much more often than concern about its accuracy or what constitutes it Am much more concerned about what becomes ‘data’ and what doesn’t (and why) even than about its privacy

Or your problem is hidden, your subtle heart disease or immune system problem, and no one knows about it yet, you're missing from the data.

One of the subtle but serious problems in science and health communication at the moment is that people are treating Long Covid like a yes/no thing. Do you have Long Covid? Yes Do you have Long Covid? No

The issue of worsening physiological symptoms which are not ‘psychosomatic’ being called this is more complicated and bigger than this implying there is no issue It can just be dangerously wrong ‘and’ mean the focus of treatment/non treatment can only be wrong also

@KSchnickelfritz Some things said routinely of psychiatry can apply in wider healthcare also Sometimes can be toss up for patients between which is worse, the pathologising of ‘distress’ or the failure to pathologise actual symptoms The combination is genuinely a nightmare

This is a big problem in #ME. The “biopsychosocial approach”is pushed at us, but what’s offered is just psychology. Recovery is impossible when you ignore the biological illness. This thinking is so entrenched that if you challenge this, it’s used as evidence against you.