Deary project: Improving Patient Pathways for Persistent Physical Symptoms

[anciendaze]

In all these approaches I continue to ask how they separate patients with symptoms that will later be validated as serious organic disease like cancer. The answer appears to be that this is someone else's problem, a great way of making things invisible.

Forgetting, for the moment, those of us who don't die on a short schedule, what about the numerous people who do have cancer that can go untreated for a year or two as a result of this approach? These proponents appear to be saying those lives are not worth the inconvenience to doctors of early detection.

If they need examples of people with serious medical conditions ignored as a result of psychologizing their illness, we can supply them. Illnesses of indisputable validity include ovarian cancer, testicular cancer, small-cell lung cancer, chronic lymphocytic leukemia, chronic myeloid leukemia, B-cell leukemia, systemic lupus erythematosus, rheumatoid arthritis, autoimmune hepatitis, idiopathic myocarditis, etc.

 

[Jo Best]

@anciendaze your post reminded me of the case of the late Dr. Lisa Steen - http://blogs.bmj.com/bmj/2016/08/25/lisa-steen-the-wilderness-of-the-medically-unexplained/

 

[trishrhymes]

Just read the leaflet for patients. Soooo patronising. Reads like it's addressed to 5 year olds. Yes dear your symptoms are real, but just take a few deep breaths and the fairies will take the pain away.

 

[Sean]

It's an infantilising con job.

 

[JaimeS]

Only this crowd can state that a condition has symptoms that aren't understood in one breath, then outline a program in which they explain those symptoms to the sufferer in the next.

The explanation isn't being framed as LEGIT or based in any way on understanding the symptoms. It's just an explanation. The implication is "talk it over with the patient" while simultaneously believing nothing about what you're saying.

This is the "I know these symptoms are real to you" talk.

 

[Woolie]

If they need examples of people with serious medical conditions ignored as a result of psychologizing their illness, we can supply them. Illnesses of indisputable validity include ovarian cancer, testicular cancer, small-cell lung cancer, chronic lymphocytic leukemia, chronic myeloid leukemia, B-cell leukemia, systemic lupus erythematosus, rheumatoid arthritis, autoimmune hepatitis, idiopathic myocarditis, etc.

The best evidence is from here:
Kole, A., & Faurisson, F. (2009). The voice of 12,000 patients: experiences and expectations of rare disease patients on diagnosis and care in Europe. URL: http://www.eurordis.org/IMG/pdf/voice_12000_patients/EURORDISCARE_FULLBOOKr.pdf

A survey of 12,000 patients with rare diseases. Found that a psychological or psychiatric misdiagnosis substantially increased time to correct diagnosis, when compared to a non-psychological misdiagnosis - in some illnesses, by more than five years.

 

[Leopardtail]

Another thing that really annoys me is that there are lots of people who genuinely need psychiatric help, yet this fiction will take resources away from those people. Sooner or later some government agency will keep records, and actually look at them, that show this is a colossal failure, and then psychiatry is likely to find itself with even less funding - this is a disaster for psychiatry, not just supposed and real psychiatric patients.

I agree entirely. Psychological and Psychiatric resources are by their very nature labout intensive and as such in short supply in most countries. Yet his irresponsible group of psychiatrists who pretend to be docotors are foisting these treament on patients for whom they will deliver no beenefit ans significant harm while distracting those expensive resources from the people they can help.

Not to mention that my "unexplainable" symptoms turned out to be Thyroid, Hepatic, and Mitochondrial they were in fact unexplained due to lazy medics failing to do their job.

 

[Leopardtail]

In all these approaches I continue to ask how they separate patients with symptoms that will later be validated as serious organic disease like cancer. The answer appears to be that this is someone else's problem, a great way of making things invisible.

Forgetting, for the moment, those of us who don't die on a short schedule, what about the numerous people who do have cancer that can go untreated for a year or two as a result of this approach? These proponents appear to be saying those lives are not worth the inconvenience to doctors of early detection.

If they need examples of people with serious medical conditions ignored as a result of psychologizing their illness, we can supply them. Illnesses of indisputable validity include ovarian cancer, testicular cancer, small-cell lung cancer, chronic lymphocytic leukemia, chronic myeloid leukemia, B-cell leukemia, systemic lupus erythematosus, rheumatoid arthritis, autoimmune hepatitis, idiopathic myocarditis, etc.

Lets not forget that they did this with diabetes and lupus too.

 

[JaimeS]

Lets not forget that they did this with diabetes and lupus too.

Basically everything is considered psychological until proven otherwise.

 

[Snowdrop]

I think it would be of benefit if most of psychiatry was disbanded and patients redirected to neurology (who could then redirect elsewhere as necessary). Neurologists should be trained to see persistent symptoms of unknown origin as truly unknown with further exploration and the development of new technologies necessary.

The patients who go for life issues/talk therapy can be redirected to psychologists with the caution 'caveat emptor' buyer beware.

In my opinion it's not the training so much that makes for a good psychologist (all things being equal they are all trained to some degree) it is the type of person that makes a good life issues psychologist; ie; their openness to other POV, their listening skills, their life experience, their ability to not personally engage as part of the drama yet be empathetic.

 

[Snow Leopard]

Actually, some of the material in the resource sheet is kind of good - you know, saying the symptoms are real. And many patients may feel enormous relief to be told this, even by a leaflet. But its still unsettling. Kind of like that nice friendly chat you had once with that evangelist... until you realised he was just laying the ground work so he could hit you with the really heavy doctrine.

It's medical gaslighting.

Also, the claim that the name "Persistent Physical Symptoms" is preferred by patients is based on a bullshit studies by the likes of Chalder etc that only compared the name to even more bullshit sounding names.

 

[Snow Leopard]

I think they opted for PPS over MUS/MUPS as it's 'more positive'!


ETA - just saw this thread on the subject from 2014 - http://forums.phoenixrising.me/inde...tional-symptoms-postive-practice-guide.31581/

From the IAPT/NHS "Medically Unexplained Symptoms/Functional Symptoms Positive Practice Guide"

What should perhaps be highlighted in the application of this model to FS is that this constitutes a previously undescribed disease mechanism, one which produces and/or maintains physical symptoms in the absence of either overt physical pathology or psychopathology. The basic hypothesis at work here is that of a systemic dysregulation which becomes self perpetuating 12.

So basically circular reasoning. We don't know, therefore our hypothesis is true.
Ref 12 by the way is Deary/Chalder/Sharpe (how did you guess!?!)

 

[Esther12]

It's medical gaslighting.

Also, the claim that the name "Persistent Physical Symptoms" is preferred by patients is based on a bullshit studies by the likes of Chalder etc that only compared the name to even more bullshit sounding names.

Yeah - that Chalder study keeps being cited in misleading ways at conferences etc. Some of their studies are so clearly designed to provide them with useful propoganda, on the assumption that they won't be questioned about the actual quality of the work. It's so irritating that they can comfortably rely on this lack of curiosity from other researchers!

 

[Sean]

It's medical gaslighting.

Exactly what it is.

 

[Woolie]

On the topic of misdiagnosis, I just came across this account by a woman whose fibromyalgia diagnosis was changed to relapsing-remitting MS 50 years later. It seems pretty clear it was R-R MS all along, because when she was 17, she had a period of temporary blindness.

I suspect events like this are common, but may be go largely unrecorded, because most doctors wouldn't see this as misdiagnosis. They would just accept that the patient had FM "before" MS or that it was "comorbid". Of course, we can all see that MS is a way simpler explanation for the entire set of features - rather than proposing two separate diseases - but that doesn't seem to be the way medical histories work.