Complaints from patients with [FND]s: a cross-sectional UK survey of why patients complain and the effect on the clinicians..., 2018, Bolton

Full title: Complaints from patients with functional neurological disorders: a cross-sectional UK survey of why patients complain and the effect on the clinicians who look after them

Abstract

Objective: To evaluate the nature of complaints from patients with functional neurological disorders and understand the reaction of UK neurology consultants to receiving complaints from this patient group.

Methods: A voluntary online retrospective survey was advertised to UK consultant neurologists. Questions asked about the nature of the complaint, how it was dealt with, how it affected their emotional well-being and attitude to work, and whether it influenced their clinical practice. Responses were anonymised. The frequency of responses and percentage of total responses were analysed. Respondents were also given opportunities to add personal comments.

Results: Responses from 58 clinicians were received. Patient disagreement with the diagnosis was a factor in 90% of complaints received. Only 77% of complaints were resolved within 6 months and 61% of clinicians received no feedback about the outcome. 31% of clinicians reported their most problematic complaint had an adverse effect on their mood. 67% of respondents changed their practice following the complaint with 59% investigating more frequently or due to perceived pressure from patients.

Conclusions: Complaints from patients with functional neurological disorders appear to be primarily due to disagreement with the diagnosis. They are more difficult to resolve than other complaints, and clinicians who deal with them often become the ‘second victim’ in the process leading to potentially adverse effects on patient care. Strategies to tackle these issues are discussed.

Open access, https://bmjopen.bmj.com/content/8/11/e021573

 

Seems like quite a problematic study. It only focuses on the effects of the clinician (e.g how it impacted their well-being) not on how the whole story impacted patients.

In fact, it seems that this study only captures the view of the clinicians (e.g. that the complaint was about loss of secondary gain or due to other doctors colluding with the patient) and leave the patient's view out of it even though the complaint came from the patient, not the other way around.

The study then concludes that FND patients are difficult and that "patients often remain dissatisfied even after receiving a reasonable explanation."

 

"clinicians who deal with them often become the ‘second victim’ in the process"

"Second victim" - who are the first victims, then? Hm.

 

From the article:

"Patients with functional disorders (sometimes also referred to as medically unexplained symptoms) have symptoms that are caused by maladaptive functioning of one or more particular body system(s), without any underlying tissue or organ damage. In neurological practice, patients whose presentation includes at least a functional element make up approximately one-third of the workload.19 Common presentations include dissociative attacks, functional weakness and functional movement disorders. Optimal management has advanced considerably in recent years, with the theyimportance of making a positive diagnosis being key, rather than telling a patient what they do not have and perpetuating disability. Psychological and physical therapy is recommended.20 21 However, awareness of functional neurological disorders among non-specialists and the general public is still relatively low.22

Patients with functional conditions tend to show more dissatisfaction with healthcare services,23–25 and anecdotally, functional disorders feature prominently in some of the most problematic and involved complaints. However, there is a dearth of literature in this area."

Yet, these neurologists wonder why their patients are dissatisfied!

 

Childish nonsense. Woe is me, the real victim.

They're literally told what the problem is and simply reject reality and substitute their own, then complain about how it's hard on them when they face absolutely no consequence or hardship for it. What crybaby rubbish. Do they have CBT for crybabies who can't take criticism? Imagine if they faced real hardship like their patients? Good grief.

 

Doctors don't know how to treat FNDs, so these patients are less satisfied with healthcare services than patients with treatable disorders. Makes sense to me. Doctors who are unable to satisfy patients are less satisfied than doctors who are able to satisfy patients.

Is anyone else noticing a trend for publishing glaringly obvious findings?

 

FND is just a " fancy" term for crazy.

If pwME were treated with dignity and fairness by the medical system, medicine would see many in our community do not have MUS or FND. Brain imaging might show a number in our community have hypoperfusion. And, perhaps other issues would be found.

Hopefully the new NICE guidelines will assist with more thorough and respectful treatment, but I think change will come very slowly at first.

As for Canada, where I am, it's still a vast hinterland. Faced with discussing ME with many health practitioners in my country, I think the fallback position would still be to brush me off.

 

The concern is though that, in order to sidestep the new NICE guideline, more pwME will either be diagnosed, or re-diagnosed, with FND and we are back to the same old 'treatments' that, in theory, we have just got rid of

 

It's an additional diagnosis here and pretty much guaranteed if you see a neurologist.

 

HIPPOCRATES> Men think epilepsy divine, merely because they do not understand it. We will one day understand what causes it, and then cease to call it divine. --- thousands of years ago [idk if divine means divine punishment]

TEXTBOOK> Between attacks, the frank epileptic is usually a constitutional psychopath of the most disagreeable
sort. ... [Epileptics] are self-centered, unable to grasp
the viewpoint of others, and childishly, uncomprehending
when forced to accept the opposite view. --- 1942 edition
of /Cecil's Textbook of Medicine/, according to two books.

[when /was/ the switch from supernatural to all in your mind? 1800s? i have more quotes but not from then.]

 

Thanks for pointing this out @Andy.
I am certain, as you say, this will indeed happen. It will be an easy work around for a number of physicians who don't agree with the new NICE guidelines.

Same goes for Canada. Last I looked, we don't seem to have our own national ME guidelines. Physicians here do refer to the CDC, but it would be good if Health Canada had more defined guidance for health care practitioners. There are Provincial guidelines, as each Province has its own health care system. However, these can be lacking.

I have to laugh about asking health care workers if they know about ME. Their seeming automatic response is yes. Although I know in many cases they have no idea.

One would think with a Stats Canada count of 600,000 Canadians with ME, it would cause the powers that be to see that all health care workers had at least some of the basics about ME. However, it's still a long road until we get there.

 

Yes, pwME can have quite disagreeable experiences with neurologists.

 

very interesting, where can I find that book online?

 

It is not that they think we are crazy, that would generate a certain sympathy. They think we are neurotic and hysterical adopting illness to get attention and sympathy or to get out of situations we find distasteful, like work and responsibility.

Even worse if you have fatigue because you are lazy as well. It is a long list which triggers disgust and negative emotions in onlookers.

As was said about us "Doctors look at them, see them for what they are and are disgusted".

Yet they are the victims in all this. And maybe they are as well because they are told we will be cured by these treatments yet we won't take our medicine, very frustrating.

 

Something related: we wrote a short summary of the psychosomatic history of epilepsy. Doctors used to write terribly things about epilepsy patients, it felt like reading a racist pamflet filled with hatred.
https://mecfsskeptic.com/psychosomatic-history-of-epilepsy/

 

FND symptoms are at best treated as inconsequential and at worst completely made up. Not sure how the medical profession are the victims here, except may be victims of fraudulent research like PACE.

 

Not that long ago, hysteria started to be seen as being an outrageous, useless idea with no scientific credibility that should be relegated to history. Nowadays it is not only respectable it is in the process of taking over much of medicine.

This has been done by a judicious strategy of changing names, an overlay of compassion for suffering that is currently not treated, use of modern technology to give a spurious scientific gloss to their quackery, a deluge of papers by a small group that makes it seem to be replicated and confirmed, the usual dogmatic claims of success used too often in alternative medicine, and, most appealing to money men, it is strongly claimed to be a cheap solution.

The average doctor who cares about his patients to any extent is assured that this is all true by authority so believes they will get better. After all that the patient gets angry and dismissive of the medical profession itself. No wonder doctors feel threatened! They blame the patients rather than admit that their profession has been taken in by charlatans

 

A huge chunk of a doctor's job is to show compassion. Or at least interest. Bedside manner. The relationship counts. That said, if the doctor finds being compassionate a problem, then he/she needs to make the time to yell and scream at the squash ball or punch pillows (and call patients names, or whatever).

And as a side note, therapists who deal with depressed people have to learn how to take care of themselves because their is some rub-off.