Review The vicious cycle of [FND]s: a synthesis of healthcare professionals’ views on working with patients, 2020, Barnett, Tyson et al

[Andy]

Full title: The vicious cycle of functional neurological disorders: a synthesis of healthcare professionals’ views on working with patients with functional neurological disorder

Purpose
The objective of this review was to synthesise studies which address the views of healthcare professionals (HCPs) towards patients with functional neurological disorder (FND).

Methods
An interpretive systematised review was conducted. Seven databases were searched using a comprehensive search strategy (MEDLINE, EMBASE, AMED, CINAHL, PsychINFO, ProQuest Nursing and Allied Health, and Scopus). Qualitative studies and those using survey methods were included. An inductive approach to thematic analysis was used to identify concepts from the data and to synthesise the results.

Results
The views of 2769 HCPs were represented in 11 included articles. The overarching theme across the articles was uncertainty: about making the diagnosis of FND, about professional roles, and about optimum management. Fear was also a common theme: of saying the wrong thing, of offending patients, or of breaking the therapeutic relationship.

Conclusions
If all HCPs felt uncertain about how to manage patients with FND and avoided them by passing them on to another discipline, then a “vicious cycle” is formed in which patients are passed from one professional to another but without receiving clear, honest information, or effective treatment. HCPs would benefit from increased training on FND and clear clinical pathways to alleviate feelings of uncertainty.

• Implications for rehabilitation
• Evidence-based or, at the very least, consensus-based multi-disciplinary care pathways for the assessment and treatment of patients with functional neurological disorder are required to improve equitability of services.
  
  
• Training packages for healthcare professionals need to be developed, evaluated and implemented in order to improve confidence of making and explaining the diagnosis and to reduce stigma of functional neurological disorders.
  
  
• Improved input for patients with functional neurological disorder is likely to occur if healthcare professionals are open, honest and use effective communication skills, both with their patients and fellow healthcare professionals.
  

Paywall, https://www.tandfonline.com/doi/full/10.1080/09638288.2020.1822935
Sci hub, https://sci-hub.se/10.1080/09638288.2020.1822935

 

[Sean]

Oh boy.

All this tsunami of toxic crap is just because they simply can't say 'we don't know'.

Ludicrous fairy tales to paper over the chasms in the profession's actual knowledge and competence are no answer to anything.

 

[MSEsperanza]

• Implications for rehabilitation
• Evidence-based or, at the very least, consensus-based multi-disciplinary care pathways for the assessment and treatment of patients with functional neurological disorder are required to improve equitability of services.

Interesting that they say consensus doesn't need evidence.

 

[Sean]

Consensus, aka clinical opinion, is all they have.

 

[Mithriel]

So while we are accused of "doctor shopping" it is perfectly valid for doctors to pass round patients until they reach a doctor who holds dogmatic views (and it is acceptable for those views to have no evidence in support of them) who is willing to impose his non evidence based and biologically implausible and unexplainable treatments upon them.

Yay for "science"

 

[rvallee]

So the people responsible for massively harmful systemic discrimination, who argue plainly that we are hysterical malingering attention-seeking shirkers, basically sub-humans unworthy of basic respect, find it odd that their colleagues hear their words plainly and apply their recommendations? And their advice is to make their recommendations more widespread, literally the source of stigma, in order to reduce the stigma?

This is completely delusional. These people's brains are broken. It's really weird seeing people get everything they want and be angry about the outcomes precisely for being exactly what they built. The patients hate it because it is 1) wrong, 2) insulting and 3) ultimately harmful; the people who fabricate this crap hate it because 1) most patients see through the bullshit because we can read words, 2) their medical colleagues apply the intended meaning of those words, not the fantasy they pretend to sell; and of course the medical professionals hate it because 1) it's completely useless and 2) understand that their words are lies and are uncomfortable with that.

The problem is offering more of itself as a solution, despite having accomplished everything it set out to do and having predictably and inevitably failed because it is a complete delusional fantasy. There is no more "therapeutic relationship" to break. YOU have broke it entirely, smashed it far beyond the point of repair. YOU, the FND/MUS/BPS folks, have built an entire delusional fantasy on lies and gaslighting and think there should be a "therapeutic relationship" out of this? That is the problem.

Again, this is what the average physician thinks of us. There is no salvaging this. There is no possible trust here. There is no possibility of a "therapeutic relationship" built entirely on abuse, lies and manipulation. This paper actually demonstrates that this here is the average opinion physicians have of us, which not coincidentally happens to exactly be the image the FND/MUS/BPS ideology portrays. This is what this ideology has built. Are they genuinely surprised that they got exactly the outcome they built? Or do they simply view this as a problem of PR, of proper marketing? The conclusions certainly support that.

Image from a Reddit thread posted here

 

[NelliePledge]

Some posts from this thread have been moved to a new thread
Epilepsy and non-epileptic or dissociative seizures (FND?)

https://www.s4me.info/threads/epilepsy-and-non-epileptic-or-dissociative-seizures-fnd.17032/

 

[Hutan]

Authors are:
Caroline Barnett 1, Rebecca Davis 2, Claire Mitchell 3, Sarah Tyson 4

Sarah, a member here @sarahtyson, has been given funds by the MEA to develop an assessment toolkit for ME/CFS clinics.

 

[Hutan]

HCPs would benefit from increased training on FND and clear clinical pathways to alleviate feelings of uncertainty.

We have a number of threads on case studies where the proponents of FND did not have too little uncertainty, but way too much. The consequence was that people with debilitating neurological diseases were misdiagnosed and given completely inappropriate care. There was a poor woman who was found to have a brain turning to mush when some scanning was eventually done. She endured months of labelling as a difficult FND patient as she physically lost her mind. Even when she had died, the authors were trying to suggest that, while she did have a brain-to-mush disease, she also had an FND overlay.

I hope you will spend some time on the forum @sarahtyson and think about FND some more. Even if FND really is more than an article of faith, (and I know many members here would be very pleased to look at anything claiming to be evidence that it is a thing, and any evidence that it can be fixed with a specific treatment), it is imperative that a high level of uncertainty is maintained, because incorrectly labelling a person with FND can be so utterly utterly inhumane.

 

[Hutan]

I'm finding it difficult to reconcile the attitudes to FND expressed here with the good letter written by David Tuller @dave30th and Sarah Tyson (@sarahtyson).
https://www.s4me.info/threads/a-new...-saunders-et-al-2023.31323/page-2#post-458988

Some excerpts from that letter:

The authors of “A new paradigm is needed to explain Long COVID” suggest that Long Covid is largely a “functional” disorder attributable to pandemic-related stress, anxiety, depression and a host of additional factors unrelated to pathophysiological processes.[1] It goes without saying that psychological states and social and environmental conditions can have a major impact on health status and exacerbate underlying health conditions. Moreover, mental health disorders are often associated with somatic complaints like fatigue and pain. But that’s very different from arguing—without legitimate or valid evidence–that millions of people with devastating and prolonged disabilities are experiencing what the authors call “functional” complaints triggered mainly by mood disorders. Rather than these disorders being the cause of the global wave of life-altering symptoms, they are more plausibly viewed as a frequent consequence of the experience of having a poorly understood and often belittled illness.

I'm not understanding how the dismissal of Long Covid as something that is largely a functional disorder (triggered mainly by mood disorders) differs from the dismissal of problems labelled functional neurological disorders that are also believed to be able to be fixed with rehabilitation approaches that have no evidence.

The authors dismiss efforts to seek pathophysiological explanations for patients’ physical symptoms with the tired charge that this approach represents “dualistic” thinking. As an alternative, they are proposing grand theories regarding “functional” etiologies and apparently expecting others to embrace these unproven speculations—an expectation that suggests a certain level of arrogance. It is simply too soon for investigators to have obtained authoritative answers to a phenomenon as complex and varied as the long-term impacts of coronavirus infection and acute COVID-19. Perhaps if the field of post-viral illness had not been neglected for decades, and patients with ME/CFS and related conditions had not been ignored and mistreated, we would understand a lot more now about the medical challenges confronting long Covid patients.

If it is arrogant to expect people to embrace unproven speculations about patients' symptoms when they follow a covid-19 infection, is it not arrogant to expect people to embrace unproven speculations about other patients' symptoms, and, further, to call for training of health care professionals to make them feel more certain when offering unevidenced treatments?

Perhaps you have adjusted your stance on the application of BPS paradigms to people with illnesses that cannot currently be biologically explained (which of course includes ME/CFS) since you authored this paper, Sarah?

 

[Hutan]

From the introduction:

Diagnosis of FND is often considered a challenge but it should not be one of exclusion [8]. There are a number of positive diag- nostic criteria which have been validated for the diagnosis of FND [9]. These positive diagnostic criteria highlight inconsistencies in presenting symptoms, such as distractibility, and incongruity with known patterns of neurological behaviour [10]. A commonly reported concern regarding diagnosis is that a clinician might miss an organic diagnosis if they were diagnosed with FND [10]. However, this is a rare occurrence and FND can be diagnosed accurately [11].

It seems the authors, including Sarah Tyson and the Masters student that she was mentoring, believe that misdiagnosis of FNDs are a rare occurrence and that people should be confident that FNDs can be diagnosed accurately.

Treatment of FND should involve a clear explanation of the diagnosis and a multidisciplinary approach [15]. Patients with FND must understand their diagnosis fully in order to optimise chances of successful treatment [16]. Legitimising patients’ experiences and showing them evidence of how their symptoms contributed to making the diagnosis can also have a positive therapeutic effect [17]. Misdiagnosis of FND is detrimental to prognosis [18]. Healthcare professionals (HCPs) who are not aware of FND, or who misunderstand or stigmatise the diagnosis, can exacerbate symptoms and impede therapeutic progress [19,20]. It is import- ant that HCPs are confident with their diagnosis of FND in order to clearly communicate this to their patients and facilitate suc- cessful treatment [21].

The authors suggest that clinician uncertainty harms the effectiveness of the treatment.

Similar findings were reported by patients with psychogenic nonepileptic seizures (PNES) [24]. PNES are episodes which resem- ble seizure-type activity; however, no electrical disruption occurs in the brain.

The certainty about these diagnoses concerns me. There is evidence that commonly used techniques fail to pick up electrical disruption in deeper parts of the brain that could cause "PNES".[/QUOTE]

 

[Hutan]

A consequence of fear and uncertainty was avoidance: of giv- ing a diagnosis [30,33,35,37], of explaining the psychological ori- gins of FND

Inpatient settings and high clinical demands were reasons not to delve into psychosocial discussions around the diagnosis of FND.

FND is clearly conceptualised as psychogenic.

Despite the commonality of a lack of consensus, some success- ful techniques were described: use of metaphors to describe diag- nosis [33,37,38], being confident with the diagnosis in order to build trust [37], and multidisciplinary working on a specialist unit [31]. Therefore, although many concepts which were raised were considered barriers or negative, small areas of success were reported in the included articles.

Using metaphors to describe the illness and being confident in the diagnosis are regarded as "Successful techniques for treatment". Unnecessary testing should be avoided, as should referrals

HCPs should also rationalise all investigations in order to reduce unnecessary treatment costs.

Despite having no clear diagnosis, patients were often referred to other disciplines or specialities for treatment, which could be consid- ered another form of buck-passing. Not only does this increase resource use but, when then the diagnosis was not explained, also hampered the other HCPs’ attempts to treat the patients and inter- act with patients for fear of saying the wrong thing. Patients were aware of being passed around, reporting feeling “at sea” [23] which further reduced their trust in professionals. Thus, avoiding a diagno- sis invoked challenging relationships with MDT members as well as patients. Consensus and greater understanding of the role of differ- ent HCPs and specialities in the care of patients with FND are required in order to facilitate goal-orientated, integrated multidiscip- linary working. Whilst consensus guidelines exist for the treatment of patients with FND for certain professions [15,49,50], a multidisciplin- ary pathway outlining HCPs’ roles from assessment to treatment may alleviate some of the issues found in this review.

There's a clear view presented that FND diagnosis is straightforward

Use of the validated positive diagnostic criteria for FND should assist in making an accurate and confident diagnosis [9,46].

and that patients should be told of their psychological difficulties so that treatment can be more effective.

This suggests that HCPs should be less fearful about providing an accurate diagnosis of FND and should focus on having open and honest conversations with patients. Not providing a diagnosis inhibits options for accessing treatment pathways. This contradicts the UK government’s principle of “no decision about me, without me” [48] which states that patients should be involved in all deci- sions about their care. If patients are not told their diagnosis, they cannot make informed decisions about their options. Further research is needed to develop interventions to support these open and positive conversations.

There's a sense that neurologists should just man-up and get on with telling people they have an FND so that the multi-disciplinary team members don't have to. As in so many FND papers, the focus is on selling the idea better - the answer to patient dissatisfaction and lack of improvement is better metaphors and removing stigma.

The paper naively suggests that patients just want to be listened to and legitimised. How the authors know this is not made clear, given that they only reviewed papers that talked to healthcare professionals.

What patients wanted was for their concerns to be lis- tened to with sincerity [23]. This made receiving their diagnosis a positive experience because it legitimised their experiences [2

given that patients want to be listened to and have their symptoms taken seriously, listening to patients fully in the initial consultation may be benefi- cial for both patients and HCPs.

Stigma and negative attitudes towards patients with FND were almost universal in the selected articles of this review. Consequently, patients with FND often do not receive the health- care they need [13]. This may be because patients with FND were deemed less worthy of healthcare than patients with organic con- ditions. Alternatively, if patients with FND are aware of the stigma towards them they are less likely to actively engage with therapy or trust their HCPs. If patients do not trust their HCPs, or feel belittled by them, they are unlikely to take on board the diagno- sis or any treatment strategies suggested. Improving these atti- tudes and reducing stigma are likely to improve patient satisfaction and management. However, this is likely to take con- siderable time and effort. Extensive education and training, as well as the development of evidence-based care pathways, is required. This would go some way to develop consensus about how best to manage patients and provide more equitable care. Including FND in under-graduate and post-qualifying training pro- grammes could ameliorate some of these barriers.

 

[Hutan]

This is all dyed-in-the wool, BPS play book stuff. We see these points repeatedly in papers as FND proponents wring their hands about how better ways of giving and explaining the diagnosis have to be found. And, that's not surprising as this paper is a review of papers examining health care professionals' attitudes towards and experience of FND patients.

There's nothing here that remotely challenges the concept of FND or promotes any uncertainty when faced with someone with an FND diagnosis - quite the opposite. There's no recognition of the fact that patients might be upset because they aren't getting better, and that there is no evidence that the supposed treatments fix people. The paper just calls for quicker, more certain, more confident diagnosis of FND.

 

[Kitty]

This contradicts the UK government’s principle of “no decision about me, without me” [48] which states that patients should be involved in all deci- sions about their care. If patients are not told their diagnosis, they cannot make informed decisions about their options. Further research is needed to develop interventions to support these open and positive conversations.

This also holds if patients are given a made-up diagnosis.

And no level of confidence or authority will negate its made-up-ness.

 

[Joan Crawford]

How can a diagnosis of FND be made with any certainty or accuracy? That's a non starter. FND is not defined by objective evidence.

It's a diagnosis made once other diagnoses have been considered and eliminated, by clinicians who buy into FND as a valid concept.

And there are many FNDs as FND encompasses everything and anything currently poorly understood / misunderstood / poorly researched. Or whatever the clinician decides it means. Sadly this will only increase clinician strain about uncertainty and fear of misdiagnosing patients (a likely certainty).

The claims of accuracy and 'rare' misdiagnosis are red flags. Misdiagnosis is everyday and everywhere in pw poorly understood conditions. It's 100% in the territory because so little is known.

The 'rare' argument is the same one I challenged Richard Brown's regardung his article re MUS in The Psychologist back in 2013
https://www.bps.org.uk/psychologist/explaining-unexplained

He claimed that MUS misdiagnosis was rare.

My response published in The Psychologist can be read here:
https://meassociation.org.uk/2014/0...lained-letter-to-the-psychologist-april-2014/

FND, MUS, SSD et al look like a rather desperate attempt to reduce clinical uncertainty where resources are slim and time is tight. But there is no benefit for patients beyond having a label. And much to be lost if patients sit with a diagnosis that could be better understood or treated effectively improving their quality of life and functioning (which might not exist now but never will if researched under FND banner). And as I mentioned above FND does not reduce uncertainty in clinical encounters, quite the opposite.

If FND is allowed to thrive it will comprehensively demolish any attempt to understood any of the conditions being sucked into its umbrella. No one wins. Certainly not patients.

 

[Jonathan Edwards]

There is certainly a naïvety in the suggestion that there are known effective approaches but I think it is important no to confuse a whole range of different issues here.

The paper naively suggests that patients just want to be listened to and legitimised. How the authors know this is not made clear,

I can answer that - because patients say so from their 'lived experience'. I have come across socially people who are greatly comforted by the FND diagnosis and we have seen that on the forum from people posting to say that. Remember that the FND patient forums are against ME patients because they deny its reality?

Tyson has bought in to the 'psychogenic' story, clearly. But if we take 'functional' at face value to mean brain malfunction at a subtle level without structural change it is perfectly legitimate. It may be that non-epileptic seizure events can now be shown on fMRI or sophisticated EEG, but since we have little or no idea how brain activity relates to thought that doesn't mean these are not events in a 'mind' if you believe in such a thing. This is where my other interest in the structure of human thought becomes very relevant. I think people have got it completely wrong so it is not surprising everything is in a mess.

 

[Jonathan Edwards]

This also holds if patients are given a made-up diagnosis.

But all diagnoses are made up to some extent. They all represent imperfect and partial understanding of mechanisms and prognosis. There is a serious problem with FND, yes, but inasmuch as it indicates that the patient does not warrant open brain surgery which might leave them with a real stroke as a complication (an event recently in my family) it is on the right track.

 

[Hutan]

I can answer that - because patients say so from their 'lived experience'. I have come across socially people who are greatly comforted by the FND diagnosis and we have seen that on the forum from people posting to say that. Remember that the FND patient forums are against ME patients because they deny its reality?

My point was that this is a paper reviewing other papers that interviewed health care professionals. At no point were patients with FND diagnoses directly asked what they want. But, fair enough, the authors do cite some papers with titles that suggest that people with FND were asked about their experiences. I do think that the statements about patients are presented in a way that suggests that patients are of one mind in what they want and what they think, and especially how they feel about receiving an FND diagnosis.

e.g.

Patients recognised that HCPs may not know how to help them and were cognisant that it must be an uncomfortable feel- ing [23,47]. What patients wanted was for their concerns to be lis- tened to with sincerity [23]. This made receiving their diagnosis a positive experience because it legitimised their experiences [24]

 

[Hutan]

But if we take 'functional' at face value to mean brain malfunction at a subtle level without structural change it is perfectly legitimate.

Sure, but this paper suggests that most healthcare professionals don't see it like that.

Five different terms were used to describe FND, with “conversion disor- der” and “functional” occurring most frequently (n =4).

Negative attitudes towards patients with FND were cited over- whelmingly. Common ways to describe patients with FND
included: “attention seeking” [29,37,39], “manipulative,” “annoying” [29], “difficult to manage” [37], “impossible to help” [39], and “troublesome” [35]. Some participants used these terms to describe colleagues’ feelings and attitudes; whilst others acknowledged their own negative language.

Stigma and misperceptions around the diagnosis of FND also contributed to negative attitudes, with Dickson et al. [30] describ- ing it as “the demonised diagnosis.” Central to this was the con- cept of malingering. Mixed attitudes towards the relationship of malingering in FND were common [31,33–35,37] and some partici- pants questioned whether functional symptoms were real [29]. Older participants attributed FND to malingering more than younger participants [35,36]. Blame was ascribed to patients by some participants in O’Connell’s study, who found it frustrating that they had to treat patients with functional symptoms [37].

The term is so debased, there's so much prejudice, that it probably can't fairly be used if someone means it simply in a 'I can't see any structural change that is causing the dysfunction' sense.

 

[Kitty]

But all diagnoses are made up to some extent. They all represent imperfect and partial understanding of mechanisms and prognosis. There is a serious problem with FND, yes, but inasmuch as it indicates that the patient does not warrant open brain surgery which might leave them with a real stroke as a complication (an event recently in my family) it is on the right track.

Fair points. Perhaps I should have said something like cynically made-up diagnosis.

Because whilst it was initially reasonable to formulate and argue out the BPS theory, deploying it in clinical practice without any supporting evidence—and claiming that just knowing is evidence—is a different kettle of haddock.

If doctors who've found a collection of things they can't explain decide to call it FND, that's fine. The problems start when some of them explain it anyway.