Occupational therapy consensus recommendations for functional neurological disorder, 2020, Stone et al

[Andy]

Background People with functional neurological disorder (FND) are commonly seen by occupational therapists; however, there are limited descriptions in the literature about the type of interventions that are likely to be helpful. This document aims to address this issue by providing consensus recommendations for occupational therapy assessment and intervention.

Methods The recommendations were developed in four stages. Stage 1: an invitation was sent to occupational therapists with expertise in FND in different countries to complete two surveys exploring their opinions regarding best practice for assessment and interventions for FND. Stage 2: a face-to-face meeting of multidisciplinary clinical experts in FND discussed and debated the data from stage 1, aiming to achieve consensus on each issue. Stage 3: recommendations based on the meeting were drafted. Stage 4: successive drafts of recommendations were circulated among the multidisciplinary group until consensus was achieved.

Results We recommend that occupational therapy treatment for FND is based on a biopsychosocial aetiological framework. Education, rehabilitation within functional activity and the use of taught self-management strategies are central to occupational therapy intervention for FND. Several aspects of occupational therapy for FND are distinct from therapy for other neurological conditions. Examples to illustrate the recommendations are included within this document.

Conclusions Occupational therapists have an integral role in the multidisciplinary management of people with FND. This document forms a starting point for research aiming to develop evidence-based occupational therapy interventions for people with FND.

Paywall, https://jnnp.bmj.com/content/early/2020/07/30/jnnp-2019-322281
Sci hub, https://sci-hub.tw/10.1136/jnnp-2019-322281

 

[Sean]

>We recommend that occupational therapy treatment for FND is based on a biopsychosocial aetiological framework.

I can't find my surprised face.

 

[chrisb]

"...a biopsychosocial aetiological framework". But, which one? Or doesn't it matter?

 

[Mithriel]

I was given a medical when I applied for SDA when it was first introduced in 1984. In those halcyon days, the doctor was not only kind, he was surprised I didn't have any household aids and recommended I ask my GP to be referred to the occupational services.

I was treated very well by the OT. She went room to room and organised lots of things I still use which made a massive difference to me. Then she took on my GP to get me a wheelchair and then she got me a social worker so I could attend a disability centre and who helped me get DLA when that started. Oh and a home help because I had young kids. (The home help and the centre did not survive the cut backs but it was good while it lasted)

They were not interested in my diagnosis, just what I needed to maximise my life. Now they are to take a biopsychosocial approach which presumably involves telling the patient they could do it if they wanted to and gently encouraging them to do more and more.

My life was considerably improved, I wonder how much good they will do now, the more kind of them the worse for us now they are told it is in our own interests.

 

[Trish]

The OT who runs our local ME/CFS clinic told me they don't do what you describe, @Mithriel, which might actually be useful. Her role was to teach patients to do activity diaries and manage and gradually increase their activity. I found out much later that that is a different service run by a different lot of OT's. By then I'd bought whatever aids I thought I needed.

 

[Mithriel]

That is terrible, Trish. It is a good while since I was assessed again but that time I had to buy anything that cost under £50 but they gave me an electric bath lift. I have bought my own stairlift and ramp which is very expensive because my stairs are curved. I knew I would have to fight for it and I just wasn't well enough.

It is the underlying idea that we need help to do more, patronising and absolutely no evidence for it.

We need OTs to teach us how to get up after a fall, how to shower safely with POTS and how to feed ourselves with minimal effort. It is all very well buying our own aids but expert advice is needed for how to use them properly and the best match for our problems.

This all makes my blood boil.

 

[Invisible Woman]

They were not interested in my diagnosis, just what I needed to maximise my life. Now they are to take a biopsychosocial approach which presumably involves telling the patient they could do it if they wanted to and gently encouraging them to do more and more.

I'm sure I've mentioned before but it seems relevant here so I'll raise it again.

I know of one lady who was assessed according to her needs. She was given a wheelchair, grab bars, bathing aids and the like. It meant that her husband could continue to work a full time job & she could safely be left alone.

Then, because of the ME/CFS diagnosis, the aids were removed. Despite her having been assessed as physically needing them. They actually came in to her home and removed them.

The end result was her husband having to quit his job to look after her as they simply couldn't afford to replace the aids that had been removed and it was unsafe to leave her for any length of time.

If this isn't open discrimination then I really don't know what is.

 

[rvallee]

People with functional neurological disorder (FND) are commonly seen by occupational therapists; however, there are limited descriptions in the literature about the type of interventions that are likely to be helpful

Normally, it's expected that there be a basis to services before delivering those services. This is everything that's wrong with BPS: after decades of practice they remain stuck at the very first step of "how to actually make this work in practice". And they wonder why people reject their snake oil when they can't even be bothered to check whether their junk is of any value.

We recommend that occupational therapy treatment for FND is based on a biopsychosocial aetiological framework

So, exactly as right now. Running in circles. Is this just a jobs program, then? It doesn't actually work, they acknowledge it, and recommendations are: "keep doing what you've been doing". SMART.

 

[Esther12]

Conclusions

Occupational therapists have an integral role in the multidisciplinary management of people with FND. This document forms a starting point for research aiming to develop evidence-based occupational therapy interventions for people with FND.

Does anyone else feel that there's a tension between asserting that OT's had an integral role in the management of FND before then saying that they're only at the starting point of developing evidence-based OT interventions for FND? Isn't it possible that they'll fail to develop effective interventions?

Has anyone ever seen consensus recommendations from clinicians that concluded that those chosen to form the consensus sadly just don't know what they're talking about, and that it's important to be honest about the lack of valuable expertise in the field being assessed?

I only quickly looked at the paper, but this sounds worryingly ideological, particularly given the way the FND diagnosis seems to be given to a wide range of patients, eg:

Aids and adaptations

The use of aids and equipment is generally thought to be unhelpful to the rehabilitation process in FND, potentially preventing future improvement by interrupting normal automatic movement patterns and causing maladaptive ways of functioning.

It is important to recognise that aids and equipment can cause new secondary problems such as joint pain (eg, shoulder pain from walking with crutches) and deconditioning of muscles.11The group endorsed these concerns but recognised that there are times when providing adaptive equipment is appropriate and/or necessary. Each case should be considered individually. It can be helpful to consider the person’s journey, differentiating the acute phase where improvement is more likely, from situations where people have treatment resistant symptoms. In the acute phase, it is advisable to avoid aids and environmental adaptations. If aids are necessary, for example, to enable a safe discharge from hospital, equipment should be: (1) considered as a short-term solution; (2) issued with a minimalist approach; and (3) a plan to progress from its use. It is important to assess the person with new equipment and teach them how to use it correctly to mini-mise maladaptive movement patterns. Follow-up appointments should be available to monitor equipment use and support plans to progress towards independence.

For people who have completed rehabilitation but experience ongoing disability, it is reasonable and appropriate to consider aids and environmental adaptations. Equipment should maxi-mise safety, increase independence, improve community access and have an overall positive impact on quality of life. See the online extended version of this document for further details.

It's not as if their 'rehabilitation' has been shown to be that impressively effective.

That paper was creepier than I expected for 2020 FND. I thought they were putting more thought in the PR/spin side of things.

 

[Snow Leopard]

"...a biopsychosocial aetiological framework". But, which one? Or doesn't it matter?

The type where they ignore the wishes of the patient and insist their rigid plan has efficacy despite a lack of objective empirical evidence.

Proposed interventions:

The consensus group identified that core OT interventions for FND include physical rehabilitation through guided activity practise, practical management of pain and fatigue, support to address mental health problems and support to reduce dependency and optimise independence.

Focusing on their hypothesised perpetuating factors:

Perpetuating factors: Illness beliefs (person and significant others). Feeling disbelieved. Maladaptive behaviours. Co-morbidities including anxiety and depression.

 

[Jonathan Edwards]

Does anyone else feel that there's a tension between asserting that OT's had an integral role in the management of FND before then saying that they're only at the starting point of developing evidence-based OT interventions for FND? Isn't it possible that they'll fail to develop effective interventions?

Perhaps tension should be contradiction?
I find this sort of study useful in that it reveals the true colours of people like Mark Edwards and Jonathan Stone. Anyone genuinely wanting to make evidence-based process in a filed does not sign up to this sort of thing.

You could say that 'Occupational therapists have an integral role in the multidisciplinary management of people with FND.' is actually a truism since within a multidisciplinary approach any role is integral. It is empty of significance or usefulness.

 

[rvallee]

There is a section on "dissociative seizures" that oddly avoids mentioning the CODES trial despite loud declarations of its massive success. How odd. It instead advises to "notice things". Groundbreaking stuff. Giants of science right here.

I really don't see how this is different from any alternative medicine out there. It's mostly just "try stuff" and "advise calm" / "be positive". One of my ex-girlfriend did a massage therapy course and it had a lot of this kind of stuff right here. It's not necessarily bad, it's just not based on science.

And as is oddly traditional in this, the response to this is a mutual admiration society of "that's great" and "fantastic work", "brilliant work". Again, how is that different from alternative medicine? If everyone agrees with each other and style trumps substance? Just try stuff, who knows if it works? Nobody actually checks anyway.



And the conclusion that a BPS framework is the right approach is basically simply stated without any supporting evidence. Besides the abstract, this is the only reference:

The aetiology is best understood within a biopsychosocial framework, considering predisposing, precipitating and perpetuating factors, each of which can include biological, psychological and/or social events (see table 1 below).

Table 1 is basically a bunch of possible things that are "potential factors". There is no actual reason why ghosts and cosmic dragons are not on this list, it's entirely arbitrary and includes "illness and disease", which likely explains 99% of cases.

There is not a hint or trace of actual science here even though this exact stuff has been used in practice for decades. I really like what physios for ME are doing but that they also promote this stuff is concerning because a lot of ME patients are coerced into this dystopian nightmare. If this were completely alternative to serious well-funded research efforts and services, I couldn't care less. But this here is a capstone that has blocked progress for decades and has no place in modern medicine. This is peak trying to bandage an injury without fixing it, the bandage is entirely imaginary, made up of "soothing words" and toxic positivity. This is adjunct support for those who need it, not primary, or even secondary, care material.

Then there is stuff like that, aimed directly at ME patients with sensory pain:

The UK group also endorsed gradual minimisation of compensatory techniques such as use of sunglasses when indoors for photophobia or the use of headphones or ear plugs for auditory sensitivity or the more content-specific misophonia, as these are thought to perpetuate and exacerbate hypersensitivity.

We know how much harm this stuff causes and the assumption of building up tolerance has no basis whatsoever.

Due to a lack of evidence for specific OT interventions, the recommendations provided in this paper are based on expert opinion

At least they recognize it's opinion. But this isn't nearly good enough. Opinion is the poorest of all evidence. It's not as if research or technological progress will change any of that. No one's life should be determined by someone's opinion, no matter how well-meaning they are.

 

[Barry]

"The aetiology is best understood within a biopsychosocial framework"

i.e. It's still not understood. But that's our BPS specialism.

 

[Sid]

It's quite an insidious trick that guys like this are up to and I'm sad to say it's working to hoodwink a lot of people.

They present themselves as brave enlightened warriors against the nasty old medical establishment that told people with unexplained symptoms that their problems were 'all in their head'. But actually when you drill past the twaddle about "computer software vs. hardware problem" and you get down to the substance of their work, it's just the same old BPS reinforcing and repackaging the same old unfalsifiable claims of causation (psychological trauma) and non-evidence based treatment (rehab and CBT) but with friendlier public-facing advocates.

There is no evidence for any of these purported treatments, it's just old wine in new bottles. The only difference is that 20 years ago some cranky old neurologist would tell you that there's nothing wrong with you and to f--- off and never come back to their office whereas this younger nicey nicey crowd gives you a bunch of BPS BS and ropes you into some useless and maybe harmful months-long rehab programme. I think I prefer the old approach tbh.

I'm noticing a huge swell of people on social media who say they have been diagnosed with FND and it's interesting how many describe themselves as recovering or in recovery and say that their rehab occupational therapists are brilliant etc. but when you read their accounts of how they're doing they're actually still disabled and not able to earn a living. Being able to take some steps unaided, or replacing one's wheelchair with crutches, is considered recovery. Any progress is great but calling this outcome recovery is a huge stretch.

Modern psychology loves this toxic positivity of recovery language. It's everywhere, even in severe and enduring mental illnesses like bipolar I and schizophrenia. And when you challenge it and point out that almost nobody actually recovers from these things they immediately resort to postmodernism. Well, what is recovery anyway? Who cares how many steps they can walk when they say they feel better? Etc.

FND is such a great swindle for BPS charlatans compared to something like ME/CFS where patients tend to be so profoundly stuck in a low energy state that it's hard to claim good results whereas in FND the symptoms are known to wax and wane a lot, in time and severity, and sometimes one symptom will mysteriously disappear and be substituted by another so the therapist can still claim victory.

 

[Invisible Woman]

Modern psychology loves this toxic positivity of recovery language. It's everywhere, even in severe and enduring mental illnesses like bipolar I and schizophrenia. And when you challenge it and point out that almost nobody actually recovers from these things they immediately resort to postmodernism. Well, what is recovery anyway? Who cares how many steps they can walk when they say they feel better? Etc.

Exactly.

I'd love to see the cost / benefit analysis though.

I don't know who the responsibility lies with these days - it was NICE & I'm assuming it still is but Public Health England might have a role in it.

Where certain life changing medication or procedures are denied to all because they're very expensive and don't help the majority how much is spent on treatments that in the long term do naff all?