Occasional essay

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Occupational therapy consensus recommendations
for functional neurological disorder
Clare Nicholson ‍ ‍,1 Mark J Edwards,2 Alan J Carson,3 Paula Gardiner,4
Dawn Golder,5 Kate Hayward,1 Susan Humblestone,6 Helen Jinadu,7 Carrie Lumsden,8
Julie MacLean,9 Lynne Main,10 Lindsey Macgregor,11 Glenn Nielsen,2 Louise Oakley,12
Jason Price,13 Jessica Ranford,9 Jasbir Ranu,1 Ed Sum,14 Jon Stone ‍ ‍3

►► Additional material is Abstract jerks and dystonia), sensory symptoms, cognitive

published online only. To view Background People with functional neurological deficits and seizure-­like events (commonly known
please visit the journal online
(http://d​ x.​doi.o​ rg/​10.​1136/​ disorder (FND) are commonly seen by occupational as dissociative seizures or non-­epileptic seizures).
jnnp-​2019-​322281). therapists; however, there are limited descriptions in the Fatigue and persistent pain are also commonly
literature about the type of interventions that are likely experienced as part of the disorder. Symptoms
For numbered affiliations see to be helpful. This document aims to address this issue by can present acutely and resolve quickly or can be
end of article. long lasting. Regardless of duration, those affected
providing consensus recommendations for occupational
therapy assessment and intervention. frequently experience high levels of distress,
Correspondence to
Mrs Clare Nicholson, Therapy Methods The recommendations were developed in four disability, unemployment, social care utilisation and
Services, University College stages. Stage 1: an invitation was sent to occupational reduced quality of life.2 The stigma associated with
London Hospitals NHS therapists with expertise in FND in different countries to FND contributes to the burden of the diagnosis.3
Foundation Trust National complete two surveys exploring their opinions regarding OT is generally recognised as an integral part
Hospital for Neurology and of multidisciplinary rehabilitation for people with
best practice for assessment and interventions for FND.
Neurosurgery, London WC1E
6BT, UK; ​clare.​nicholson6@​ Stage 2: a face-­to-­face meeting of multidisciplinary FND. As a therapy, it has face validity for FND;
nhs.​net clinical experts in FND discussed and debated the data however, there is little published evidence to
from stage 1, aiming to achieve consensus on each issue. support its efficacy, and there are few published
Received 23 October 2019 Stage 3: recommendations based on the meeting were descriptions of interventions to guide practice.4 5
Revised 12 March 2020
Accepted 1 April 2020 drafted. Stage 4: successive drafts of recommendations Given that FND differs in a number of important
Published Online First 30 July were circulated among the multidisciplinary group until ways from other neurological conditions, typical
2020 consensus was achieved. OT neurorehabilitation strategies may not be
Results We recommend that occupational therapy directly translatable to people with FND and a
treatment for FND is based on a biopsychosocial more specific approach may be required.
aetiological framework. Education, rehabilitation The current evidence base for OT in FND reha-
within functional activity and the use of taught self-­ bilitation is limited to several studies of multidis-
management strategies are central to occupational ciplinary rehabilitation,6–9 including one with a
therapy intervention for FND. Several aspects of randomised design.10 The interventions delivered
occupational therapy for FND are distinct from therapy by OTs in these studies are described only briefly;
for other neurological conditions. Examples to illustrate they include: retraining normal movement within
the recommendations are included within this document. function, graded reintroduction to daily activities,
Conclusions Occupational therapists have an integral anxiety management and the reestablishment of
role in the multidisciplinary management of people with structure and routine. Outcomes from these studies
FND. This document forms a starting point for research are promising, reporting improvement in scales of
aiming to develop evidence-­based occupational therapy physical function and quality of life, immediately
interventions for people with FND. after treatment and at follow-­up periods of 12–25
months.7–9 High levels of patient acceptability have
been shown in at least one study that identified that
OT compared favourably with other treatments.9
Introduction Evidence from randomised control trials is needed
Occupational therapists (OTs) assist people with to demonstrate effectiveness of the specific rehabili-
physical and mental health difficulties across the tation interventions described in these studies.
lifespan to enable participation in daily activities. In summary, OT is recognised as part of multidis-
OTs are dually trained in physical and mental health ciplinary intervention for FND; however, there is a
rehabilitation. This skill set combined with a focus limited evidence base, and the role of OT within the
on function rather than impairment makes OTs MDT is not well defined. With this paper, we aim to
© Author(s) (or their
employer(s)) 2020. No ideally suited to help people with functional neuro- develop a broad set of consensus recommendations
commercial re-­use. See rights logical disorder (FND). to guide OT practice for people with FND across
and permissions. Published FND is characterised by symptoms of altered the range of clinical settings (hospital, rehabilitation
by BMJ. voluntary motor or sensory function with clinical ward and community) and time following symptom
To cite: Nicholson C, findings providing evidence of incompatibility onset (acute to chronic). These recommendations
Edwards MJ, Carson AJ, et al. between the symptoms and recognised neurological come from our experience working with people with
J Neurol Neurosurg Psychiatry or medical conditions.1 Symptoms are diverse and FND aged 16 years and over; however, recommen-
2020;91:1037–1045. can include weakness, movement disorders (tremor, dations may have transferability to adolescent and
Nicholson C, et al. J Neurol Neurosurg Psychiatry 2020;91:1037–1045. doi:10.1136/jnnp-2019-322281 1037
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J Neurol Neurosurg Psychiatry: first published as 10.1136/jnnp-2019-322281 on 30 July 2020. Downloaded from http://jnnp.bmj.com/ on June 7, 2024 by guest. Protected by copyright.
paediatric populations. This work aims to complement existing psychiatry and is a genuine cause of disability due to motor and
clinical recommendations for FND11 12 and to form a starting non-­motor symptoms. Within the patient population, there is
point from which to develop evidence-­based interventions. considerable heterogeneity in terms of symptom presentation,
disability and psychiatric comorbidity. The aetiology is best
Methods understood within a biopsychosocial framework, considering
Consensus process predisposing, precipitating and perpetuating factors, each of
Data collection and analysis was based on a Delphi method, with which can include biological, psychological and/or social events
four key stages. (see table 1 below).
Stage 1: in 2017/2018, 12 OTs from different countries with The motor symptoms of FND can be considered, at one level,
extensive experience in FND were invited to complete two as abnormal patterns of movement, that are ‘driven’ by involun-
online surveys exploring assessment and interventions for FND. tary self-­focused attention. Thus, when the person’s attention is
The surveys were developed, data collated and summarised (by redirected away from their body (distraction), abnormal move-
CN). Elaboration and clarification were sought through a series ment reduces or disappears. Non-­motor symptoms, including
of follow-­up emails. sensory changes, are also likely to be similarly affected by uncon-
Stage 2: the expert OT group, together with experts in FND scious, self-­focused attention.
from other clinical disciplines were invited to take part in a People with FND commonly experience other health prob-
face-­to-­face meeting in Edinburgh, UK, in September 2018. The lems; this can include psychiatric comorbidity, coexisting
collated data from stage 1 was discussed and debated. neurological disease and other functional symptoms. Common
Stage 3: recommendations based on the meeting were drafted. coexisting symptoms such as chronic pain and fatigue are often
Stage 4: a series of drafts were sent to the multidisciplinary important determinants of disability and quality of life.13 14
group for feedback. Participants either endorsed each section of
the draft or provided comments and suggestions. This process Role and rationale for OT for FND
continued until a consensus was reached. The term ‘occupational’ in OT refers to any activity that has
meaning and importance to an individual, based on what they
Participants need to do, want to do or are expected to do within societal and
Occupational therapists cultural norms.15
The group represented OTs from three nations: England (n=7), Common reasons to refer to occupational therapy:
Scotland (n=3) and the USA (n=2) who work with people ►► Disability affecting participation in daily activities (eg,
with FND in a variety of clinical settings: acute neurological personal care, domestic activities, childcare, community or
inpatients, neurological outpatients, neurological community leisure activities).
rehabilitation, neuropsychiatry outpatients, neuropsychiatry ►► Determining care needs for people with disability.
inpatients, community mental health and accident and emer- ►► Difficulty accessing home, education, work or community
gency. Participants had between 10 and 23 years (mean=17; environments.
SD=14) of postgraduate experience. ►► Vocational rehabilitation and support to sustain paid
employment, education and voluntary roles.
Multidisciplinary clinician group ►► Pain, fatigue, mental health and cognitive difficulties which
There were representatives from neuropsychiatry (n=1), impede activity engagement.
neurology (n=2), neurophysiotherapy (n=2) and neuropsy-
chology (n=1). There was also service user (patient and public) When and how to refer to OT
representation (n=2). OTs can be involved from symptom onset to support in the
All participants attended the meeting, except the OTs from the community. It is preferable that a physician makes and explains
USA (who participated via Skype) and the neuropsychologist. the diagnosis to the patient prior to referring for treatment.16 17
We suggest sharing clinical consultation letters with the treating
Conceptualisation of FND/aetiological model therapy team and the patient. A referral letter should include
The group’s consensus on the definition and conceptual under- information such as the diagnosis, assessment findings, results
standing of the diagnosis of FND was as follows: FND is a from medical investigations, follow-­up plans, other professionals
diagnosis that exists at the interface between neurology and involved and reason for referral.

Table 1 Potential predisposing, precipitating and perpetuating factors for FND (adapted from Stone50)
Factors Biological Psychological Social
Predisposing vulnerabilities Illness and disease. Personality traits. Adverse life events or stressors.
History of previous functional symptoms. Poor attachment/coping style. Childhood neglect.
Emotional disorder. Difficulties in interpersonal relationships.
Symptom modelling.
Financial difficulties/deprivation.
Precipitating mechanisms Physical injury or state (eg, drug side effect). Panic attack. Adverse life events or stressors.
Abnormal physiological event (eg, hyperventilation Perception of life event as traumatic/negative.
and sleep paralysis).
Perpetuating factors Plasticity in sensory and motor pathways leading to Illness beliefs (person and significant others). Diagnostic uncertainty (eg, ongoing medical
abnormal movement patterns. Feeling disbelieved. investigations).
Deconditioning. Maladaptive behaviours. Reliance on care and benefits.
Fatigue. Co-­morbidities including anxiety and depression. Compensation claims.
Chronic pain. Ongoing social stressors (eg, relationship difficulties,
financial hardship and loss of roles).

1038 Nicholson C, et al. J Neurol Neurosurg Psychiatry 2020;91:1037–1045. doi:10.1136/jnnp-2019-322281

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Different factors may influence the suitability for treatment.
Table 2 Useful occupational therapy specific assessment tools for
The group suggest that OT intervention is more likely to be
FND
successful if the person with FND:
The Canadian Occupational Evidence-­based outcome measure that captures a person’s self-­
►► Has some degree of understanding and agreement with the Performance Measure perception of performance and satisfaction with performance in daily
diagnosis. activities.
►► Has agreed to the referral. Has been widely adopted in occupational therapy research. Used for
both paediatric and adult populations.51
►► Can identify rehabilitation goals or areas of need and are
Occupational Semistructured interview design based on the MOHO; captures
motivated to make changes. Circumstances Assessment information regarding occupational engagement from 11 domains
►► Has an understanding that the initial focus of OT is to Interview and Rating Scale including habits, roles, personal causation, values, skills, physical
environment, social environment and readiness for change.52
improve function and therefore is unlikely to include provi-
The Worker Role Interview Semistructured interview format addressing factors that may impact
sion of aids and adaptations. on a person’s ability to maintain or return to work during or after a
It is not uncommon for people to lack confidence in the diag- period of illness or injury.53
nosis of FND. Through providing education about the diagnosis The Model of Human Assesses the impact of a person’s volition, habituation, skills and
Occupation Screening Tool environment on their occupational functioning.54
at a level that is accessible to the patient, OT can help to turn
The Occupational Self-­ Based on the MOHO.
around low diagnostic confidence. In instances where there is Assessment Captures a person’s perceptions of their own occupational
still doubt, we would suggest that OT can still be of benefit competence and occupations of importance.
Therapist observations are also considered when scoring.55
by focusing on the impact of symptoms on function rather
Adolescent and Adult Evaluates behavioural responses to everyday sensory experiences.
than addressing symptoms at a diagnostic or impairment level. Sensory Profile Used for ages older than 11 years.41
However, where there is strong disagreement about the diag- The Assessment of Motor Clinician rated tool. Allows therapists to simultaneously observe
nosis, therapy is much less likely to be helpful. and Process Skills and evaluate a person’s ability to perform activities of daily living
(domestic and personal) and the quality of their motor and process
skills.56
FND, functional neurological disorder; MOHO, Model of Human Occupation.
Assessment and outcome measurement
OT assessment for people with FND is usually undertaken over
a number of sessions. Taking time to listen to the person and
to identify goals or areas of need, then it may be appropriate to
explore the impact of their symptoms is key to developing a
discuss whether OT intervention is right for them at this time.
positive therapeutic relationship, as well as understanding their
Unique to OT is the use of occupation-­ based conceptual
rehabilitation needs. The following structure may be useful to
models of practice that guide intervention. The two models of
guide an initial assessment:
practice most commonly used by the consensus group are the
1. Ask the person about when and how their symptoms started.
Model of Human Occupation and the Canadian Model of Occu-
2. Create a list of current symptoms. For each symptom, ask
pational Performance and Engagement.19 20 Other models may
about exacerbating and easing factors, variability, severity be helpful, but these two were favoured owing to their links
and the impact on function. with well-­established tools that are used by the consensus group
3. Clarify the person’s understanding of their diagnosis and to guide assessment and intervention with FND (see table 2).
whether they are in agreement with it. Although none have been specifically validated in an FND popu-
4. Ask about other health problems and medical history (in- lation, these tools can be also be used to measure the outcomes
cluding psychological health). of intervention.
5. Take a detailed social history, exploring usual roles, respon- There is an absence of clinically useful, validated outcome
sibilities and meaningful activities. measures specific to FND. Assessing change in FND is chal-
6. Gain a picture of their 24-­hour routine. This is helpful to lenging due to the heterogeneity of presentations, variability
uncover symptom perpetuating factors such as poor sleep of symptom severity and multiple interacting comorbidities.
hygiene, boom and bust activity patterns, lack of occupation Outcome measures should therefore address multiple domains
and structure. including physical function and disability, quality of life, mental
7. Determine if they have care needs, and if so, are these needs health, healthcare utilisation and perception of symptom severity.
being met and by whom? We direct readers to a recent systematic review of outcome
8. Ask about access to the home, education or work environ- measurement in FND and recommendations by Nicholson et al
ment and the use of environmental adaptations and aids. and Pick et al.21 22
9. If they are in work or education, ask about the impact of
their symptoms. If unemployed or retired, it may be appro- OT treatment
priate to ask about receipt of benefits/insurance. OT aims to help people overcome the effects of disability
10. Undertake an observation of daily activities (eg, personal through practical support to improve performance and satisfac-
care, meal preparation and functional transfers) to establish tion in activities of daily living. The consensus group identified
the impact of symptoms on activity engagement. During ob- that core OT interventions for FND include physical rehabilita-
servation, note distractibility and variability of symptoms so tion through guided activity practise, practical management of
that these can be discussed in a supportive way.18 pain and fatigue, support to address mental health problems and
Identify the person’s goals for treatment and their expecta- support to reduce dependency and optimise independence.
tions of OT. It is important to come to a shared understanding The group suggests that supporting self-­management of symp-
of what treatment can be offered; a verbal agreement at the toms is particularly important in FND and should be consid-
start of intervention can prevent potential difficulties when ered through all aspects of OT. The person is supported to take
concluding treatment. We suggest discussing that OT interven- ownership of their rehabilitation and develop an internal locus
tion will be directed by the goals or problems that the person of control, rather than placing control in the hands of clinicians
has identified and that independent practise outside of sessions and family members. This is achieved through understanding
will be required. If, after some discussion, the person is unable the diagnosis, understanding the rationale for interventions and
Nicholson C, et al. J Neurol Neurosurg Psychiatry 2020;91:1037–1045. doi:10.1136/jnnp-2019-322281 1039
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graded goal setting. Interactive workbooks or a therapy journal
can be a useful tool to support self-­management.
Box 1 Ingredients of education about functional
neurological disorder (FND)
Goal setting 1. Acknowledge that FND is a real, common and disabling
Goal setting is generally considered an important part of OT condition that causes neurological symptoms that are
intervention.23 Goal setting with people with FND can differ outside the person’s control.
from methods used in typical neurorehabilitation settings, for 2. The symptoms of FND are caused by a potentially reversible
example, after stroke, where therapists may be able to relatively miscommunication between the brain and the body.
accurately predict recovery and help set realistic goals. With 3. Discuss that FND is diagnosed by a neurologist using
FND, it can be helpful to consider that recovery often follows a ‘positive clinical signs’ (eg, Hoover’s sign, distractibility,
pattern of symptom remission and exacerbation. For this reason, entrainment of tremor and variability in symptoms during
most of the consensus group reported that they take a more function) and is not a diagnosis of exclusion. It can be
flexible approach to goal setting; goals are set by the person diagnosed alongside other neurological conditions.18
with FND, in their own words and may not necessarily be time 4. Help the person understand the relevance of triggering
dependent. events if they report them.11
5. Discuss how self-­directed attention can make symptoms
Education worse and conversely redirecting attention (distraction) can
Education to improve understanding about symptoms is widely temporarily reduce symptoms.
considered to be an important part of FND treatment.24 25 Helping 6. Provide education on how the body’s stress response can
people with FND to understand the diagnosis can improve their influence functioning of the nervous system and therefore
confidence that it is correct and builds the foundations for reha- FND.
bilitation and self-­management. It is important that OTs are 7. Discuss how symptom focus and chronic health conditions
aware that there is often stigma attached to the diagnosis of can exacerbate or cause cognitive difficulties, fatigue,
FND. Patients report that interactions with healthcare profes- anxiety, low mood and pain.
sionals have often left them feeling misunderstood and aban- 8. Discuss the role of OT in treating FND.
doned by the healthcare system.3 Clinicians should therefore 9. Discuss the importance of a 24-­hour approach to therapy;
be mindful to impart information with empathy and sensitivity, that is, implementing rehabilitation strategies throughout
emphasising the genuine nature of symptoms. Education should the daily routine as part of self-­management.
include how activities and occupations, combined with taught 10. Signpost to sources of information including: www.
strategies, form part of symptom management. It is important neurosymptoms.org and to patient-­led organisations,
to pitch education at the right level, recognising the person’s for example, FND Hope International, FND Hope UK,
attitude, knowledge and skills in order to change, support and FND Hope US, FND Hope Canada, FND Action (UK), FND
enhance occupational performance.26 See Box 1 for points that Dimensions (UK) and FND Australia Support Services. The
can be included in an explanation of FND and the role of OT. book Overcoming Functional Neurological Symptoms:
Five Areas Approach24 can be a useful resource in helping
Vocational rehabilitation people understand symptoms and management strategies,
OTs have a key role in supporting people with FND to manage especially in those that recognise anxiety and/or mood
their condition in the context of work and/or study.27 We suggest instability to be part of their problem.
that vocational rehabilitation principles for neurological reha-
bilitation can be applied to people with FND.28 This includes
helping employers and educators to understand that they have
genuine symptoms that may vary in severity, with possible It is important to recognise that aids and equipment can cause
periods of remission and exacerbation. OTs can work jointly new secondary problems such as joint pain (eg, shoulder pain
with occupational health departments to identify and advo- from walking with crutches) and deconditioning of muscles.11
cate for reasonable adjustments to improve work performance The group endorsed these concerns but recognised that there are
and symptom management. This may include role modifica- times when providing adaptive equipment is appropriate and/or
tions, reduced hours, regular rest breaks and flexible working necessary. Each case should be considered individually. It can be
options. Another important aspect of vocational rehabilitation helpful to consider the person’s journey, differentiating the acute
is to develop a graded return to work/study following a period phase where improvement is more likely, from situations where
of sick leave.29 people have treatment resistant symptoms. In the acute phase,
Sustaining paid employment is likely to be important in it is advisable to avoid aids and environmental adaptations. If
maintaining good health; however, in some cases, it may not aids are necessary, for example, to enable a safe discharge from
be possible for the person to continue despite reasonable adjust- hospital, equipment should be: (1) considered as a short-­term
ments.30 In these cases, the consensus group suggests that OTs solution; (2) issued with a minimalist approach; and (3) a plan
can have a role in supporting people with FND to positively to progress from its use. It is important to assess the person with
withdraw from their current role and seek alternative roles (paid new equipment and teach them how to use it correctly to mini-
or unpaid). mise maladaptive movement patterns. Follow-­up appointments
should be available to monitor equipment use and support plans
Aids and adaptations to progress towards independence.
The use of aids and equipment is generally thought to be unhelpful For people who have completed rehabilitation but experience
to the rehabilitation process in FND, potentially preventing ongoing disability, it is reasonable and appropriate to consider
future improvement by interrupting normal automatic move- aids and environmental adaptations. Equipment should maxi-
ment patterns and causing maladaptive ways of functioning. mise safety, increase independence, improve community access
1040 Nicholson C, et al. J Neurol Neurosurg Psychiatry 2020;91:1037–1045. doi:10.1136/jnnp-2019-322281
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Table 3 Examples of intervention strategies for functional movement symptoms
Symptom Intervention strategy
Functional tremor ►► Superimpose alternative, voluntary, ‘rhythms’ on top of the existing tremor and gradually slowing all movement to a complete rest.
►► Unilateral tremor: use the unaffected limb to dictate a new rhythm (eg, tapping/opening and closing the hand), that is entrain the tremor to stillness.
Music can be introduced to dictate a rhythm to follow.
►► Assist the person to relax the muscles in the limb to prevent cocontraction.
►► Try to control a tremor with the person at rest, before moving on to activity.
►► Use of gross rather than fine movements (which take more concentration), for example, handwriting retraining; using a marker and large piece of paper or
white board with big lettering or patterns/shapes rather than trying to focus on ‘normal’ handwriting.
►► Discourage cocontraction or tensing of muscles as a method to suppress a tremor, as this is unlikely to be a helpful long-­term strategy.
Functional jerks ►► Addressing unhelpful prejerk cognitions and movement (eg, signs of anxiety, frustration or effort, such as breath-­holding).
►► General relaxation techniques;: diaphragmatic breathing or progressive muscular relaxation.
►► Sensory grounding; a strategy that can be used to bring oneself into the present moment40 (eg, noticing details in the environment (sounds, sights and
smells), feeling a textured item, cognitive distractors such as counting backwards and singing).
►► Encourage learning of ‘slow’ movement activities such as yoga or tai chi as a way of regaining movement control and redirecting attention away from the
symptom.
Dystonia ►► Encouraging optimal postural alignment at rest and within function, considering a 24-­hour management approach.
►► Encourage even distribution of weight in sitting, transfers, standing and walking to normalise movement patterns and muscle activity.
►► Grade activity to increase the time that the affected limb is used (using normal movement techniques) within functional activities.
►► Avoid postures that promote prolonged positioning of joints at the end of range (eg, full hip, knee or ankle flexion while sitting).
►► Discourage nursing of the affected limb but demonstrate and promote therapeutic resting postures and limb use.
►► Strategies that reduce muscle overactivity, pain and fatigue, for example, muscle relaxation strategies, supporting the affected limb when at rest, using
pillows or furniture to take the weight of a limb when sitting or lying down.
►► Address associated problems of pain and hypersensitivity.
Functional limb weakness ►► Engage the person in tasks that promote normal movement, good alignment and even weight-­bearing. Task examples may include: transfers, sit to stand,
standing, perch sitting in personal care or kitchen tasks, using the hand to stabilise objects (so as to avoid learnt non-­use) and placing the hand on the
kitchen bench while standing to prepare food (rather than letting it hang by the side).
►► Bilateral functional lower limb weakness; joint sessions with PT colleagues to complete tasks using the upper limbs while standing with the aid of a
standing frame.
With all symptom types, employing anxiety management and distraction techniques when undertaking a task can be helpful. Video recording interventions (with consent) can be useful to play
back to the person to identify changes in symptoms (eg, in tremor amplitude or extinction). It can demonstrate changeability, highlight successes (and build confidence) and act as a reference
point for replication of strategies outside of therapy.

and have an overall positive impact on quality of life. See the use of visual information in an automatic (or subconscious) way.
online extended version of this document for further details. For example, they may avoid obstacles while walking or pick
up an object without guidance. While there is little published
Splinting information regarding treatment, there was experience within
As with adaptive aids, splinting may prevent restoration of the consensus group of helping people with functional visual
normal movement and function. Potential problems with loss, including a description of treatment for two patients who
splinting are: (1) increasing attention and focus to the area, had a positive outcome.34 This approach included: (1) helping
thereby exacerbating symptoms; (2) increasing accessory muscle the person understand the diagnosis and (2) sensitively commu-
use, (3) use of compensatory movement strategies, (4) immobil- nicating to the person and positively reinforcing events when
isation leading to muscle deconditioning; (5) learnt non-­use and they are likely to have used visual information (although without
(6) increased pain. Serial casting for fixed functional dystonia awareness). OT intervention should aim to prevent activity
has been associated with worsening symptoms and the onset of avoidance and dependence on others. OTs also have a role in
complex regional pain syndrome.31 32 assisting to minimise secondary problems associated with light
We suggest trying strategies that encourage normal movement hypersensitivity, agoraphobia and unhelpful behaviours such as
patterns and resting postures before considering splinting. It keeping the eyes closed.
is possible that removable splints may have an overall positive
effect in some cases, but benefits should be balanced against Functional cognitive impairment
potential harm. If a splint is issued, the person should be moni- Cognitive symptoms are common in FND either as a primary
tored regularly and feel empowered to discontinue use in the problem or as part of a combination of symptoms. Several
event of adverse side effects such as pain and skin break down. factors can contribute to cognitive problems including pain,
fatigue, anxiety, low mood, poor sleep, sensory hypersensitivity,
Symptom-specific treatment suggestions symptom focus and medication side effects.35 Before advising
Functional motor symptoms practical cognitive strategies, it is helpful to discuss the link
Functional motor symptoms include tremor, weakness, dystonia, between potential contributing factors and cognitive function.
gait disorder and jerks. Movement strategies that redirect atten- The aim is to understand, and where appropriate normalise,
tion away from the body can help to reduce motor symptoms these experiences and reframe the symptom as part of FND
and normalise movement (see table 3 for examples). OTs can rather than an additional health problem. Discussions should
help people identify and practise normal movement strategies help the person to understand that their cognitive skills are likely
and integrate them into daily activities. intact (unless there is underlying comorbidity), but multiple
factors are competing for their cognitive resources.
Functional visual impairment Key to managing cognitive symptoms is to address the contrib-
Functional visual loss may be experienced as a persistent absence uting factors (fatigue, pain, anxiety and poor sleep), either as
of vision, intermittent loss of sight or reduced visual acuity.33 part of OT or to encourage the person to seek help from their
While the person may experience a lack of vision, it is usually general practitioner (eg, to consider reducing sedating medica-
possible to observe actions that demonstrate that they are making tions). Other helpful strategies include encouraging structure
Nicholson C, et al. J Neurol Neurosurg Psychiatry 2020;91:1037–1045. doi:10.1136/jnnp-2019-322281 1041
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and routine; writing out a daily plan to prevent activity and The experience of hypersensitivity can influence the pace and
cognitive overload; taking time out for relaxation (to minimise intensity at which treatment can be delivered and should there-
stress); and normal use of (but not dependence on) calendars fore be carefully assessed and considered as part of triage and
and alarm functions in mobile phones. OTs can also support treatment planning. UK group members outlined that sensory
the person and significant others to gradually reduce practical hypersensitivity (for people with FND) tends to be addressed
assistance (if applicable) and provide opportunity for positive within function by encouraging graded exposure to various
risk taking within function. Finally, like other functional symp- sensations experienced within the persons day-­to-­day routine.
toms, overly attending to the problem (ie, trying to remember) The UK group also endorsed gradual minimisation of compen-
is unhelpful; most people can relate to the experience of remem- satory techniques such as use of sunglasses when indoors for
bering a forgotten name once they have stopped trying to think photophobia or the use of headphones or ear plugs for auditory
about it. sensitivity or the more content-­specific misophonia, as these are
thought to perpetuate and exacerbate hypersensitivity. In some
Dissociative (non-epileptic) seizures (DSs) settings in the USA, treatment and assessment of sensory modu-
DSs are a specific presentation of FND characterised by tempo- lation difficulties are based on the Jane Ayers Theory of Sensory
rary episodes of impaired awareness. The episodes may resemble Integration.43 The Adolescent/Adult Sensory Profile assessment
epilepsy or syncope, but they are not associated with abnormal tool can be used to direct the development of a personalised
electroencephalography changes. DSs are a common reason for sensory exposure regimen. This regimen may combine compen-
frequent attendance to accident and emergency.36 Acute hospital satory strategies to inhibit and grade exposure to sensory sensi-
admissions can be highly distressing and are usually unneces- tivities alongside sensory-­ based activities to better regulate
sary for DS. The main evidence-­based treatment for DS involves emotional responses, improve cognitive functioning and increase
psychological therapy, delivered by specially trained clinicians.37 functional participation.
Here we provide ways in which core OT skills can be used to Hypersensitivity of the skin or allodynia is a common
help people with problems associated with DS. See the online secondary consequence of ‘fixed’ functional dystonia (as are
extended version of this document for further information. other trophic changes associated with complex regional pain
A good place to start treatment is to ask the person how they syndrome).31 Unchecked, hypersensitivity can lead to problems
wish to be supported if they have a DS during a therapy session. associated with learnt non-­use (eg, further pain and hypersensi-
They may have devised a plan with other clinicians that you can tivity, muscle atrophy and discomfort associated with overuse of
follow. If not, this could be an initial focus of OT intervention. the unaffected side). OTs can facilitate graded use of the affected
A DS plan can help put clinicians at ease and make the person limb while gradually reducing protective postures. For instance,
feel safer, which may prevent escalation and reduce duration of encouraging arm swing when walking, weight-­bearing in sitting
the episode.38 Important elements are to help the person to a or standing, bilateral upper limb use in activity. Graded expo-
safe space where they are unlikely to injure themselves. Let them sure to different sensory experiences may help to normalise
know they are safe but avoid constant reassurance and physical sensation, for example, wearing clothing on the affected limb,
contact or restraint. Advising others to behave as they would applying moisturiser and washing up in warm water.
if someone is having a panic attack can be helpful. People can
sometimes hear and understand what you say during a DS, even
if they are unable to respond. Anxiety
Ask about triggers and warning signs of an imminent episode. Although not universal, anxiety is common in FND and may
It is common for people to report having no memory of events act as a symptom precipitating or perpetuating factor. Some
prior to and during a DS; however after some discussion, many people may experience the physiological and somatic conse-
start to recognise patterns. If a warning sign is experienced prior quences of anxiety (eg, racing heart rate and tight chest)
to a DS, taught strategies can be used to try and avert an event at without recognising the experience emotionally. This has been
this point.39 A group of strategies that can be helpful are Sensory described as panic without panic or alexithymia.44 OTs can help
Grounding Techniques, which aim to keep people present in to address anxiety through education by describing the physio-
the moment and focus attention to prevent dissociation.40 Some logical process of anxiety and its physical impact on the body.
examples include noticing the detail in the environment (eg, The concept of a fight or flight response may be useful for
colours, textures and sounds); cognitive distractions (eg, word patients who do not identify as feeling anxious. OTs can help
games and counting backwards); and sensory-­based distractors people identify how anxiety interacts with FND symptoms to
(eg, flicking a rubber band on the wrist and feeling a textured impede involvement in daily activities and implement anxiety
item). management strategies. This can include breathing techniques,
progressive muscle relaxation, grounding strategies, visualisa-
Common problems associated with FND tion, distraction, thought reframing, mindfulness, integrating
Hypersensitivity activities of enjoyment, regular cardiovascular exercise and
Many people with FND report hypersensitivity to touch, supporting the person to undertake an anxiety provoking task
light, sound and movement. Specific terms have been used to in graded steps.
describe these problems, including sensory modulation difficul-
ties, sensory defensiveness and sensory over-­responsiveness.41 42
These symptoms are not unique to FND; in fact, they are also Fatigue and pain management
common in people with other diagnoses, such as migraine, People with FND often experience pain and/or fatigue. These
chronic pain and fatigue. It is important to address hypersensi- can be disabling symptoms and should therefore be considered
tivity as it can become a maintaining factor, resulting in avoidant as part of any intervention. Evidence for the management of
behaviours, limiting participation in functional activities and pain and fatigue in other long-­term conditions currently exist
exacerbating other symptoms and disability. and can be adapted for use in FND.45 46
1042 Nicholson C, et al. J Neurol Neurosurg Psychiatry 2020;91:1037–1045. doi:10.1136/jnnp-2019-322281
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Psychological trauma and undergoing treatment, an open discussion about whether
A systematic review found that serious adverse life events are they wish to defer application until they see the outcome of
more common in people with FND compared with the general treatment may be appropriate.
population.47 Of note, childhood neglect was found to be a
greater risk factor than physical or sexual abuse. Importantly, Housing
adverse life events were not universal, and even if present, may Rehousing to an adapted property should be avoided when
be relevant to some but not all as also evidenced by a recent case symptoms are presenting acutely and/or access to rehabilitation
controlled study exploring predisposing risk factors for func- is available and wanted. Support with rehousing may be appro-
tional limb weakness.48 For some people, addressing the impact priate if a patient has chronic symptoms that have not responded
of adverse events (eg, in post-­ traumatic stress disorder) may
to a rehabilitation approach. A person’s housing situation may
be a necessary part of treatment. For others, a more symptom
also be a trigger or maintaining factor to their symptoms or lack
focused intervention may be appropriate. The group felt that
of occupational independence and therefore if no immediate
addressing the sequelae of psychological trauma is not a generic
changes can be affected, then rehousing may be considered. In
OT role. Some OTs have sufficient experience and qualifica-
tions to manage difficulties that arise from serious mental health such instances, OTs may have a role in advocating for rehousing
problems, but this usually is the result of additional training and on behalf of the person.
accreditation. However, people sometimes disclose information
about traumatic events during OT intervention. It is therefore Relapse prevention/staying well plan
important that therapists have the skills to listen and contain During rehabilitation and the journey to recovery, it is common
the person’s distress. Using reflexivity to acknowledge one’s for people with FND to experience periods of symptom exac-
own limitations within the context of your professional role is erbation. OTs should help people to prepare to manage these
imperative. There are some OTs who may feel more capable in episodes with a relapse prevention, management or staying well
managing trauma due to their skill set and practice setting (eg, plan. This essential part of treatment is a written summary that
mental health or neuropsychiatry settings). Less experienced can be completed collaboratively at the conclusion of treatment.
clinicians should be encouraged to seek supervision and support. A plan should consider the following questions:
Knowing who to refer on to if a person discloses trauma (and 1. What have you learnt about your condition?
consents to onward referral) is important and clear lines of how 2. What makes your symptoms worse?/What might trigger set-
to do this should be established. backs?
3. What are the most helpful management strategies that you
Risk management have learnt?
People with FND often disengage from usual activities due to a 4. What were the unhelpful coping strategies that were making
perceived risk to their personal safety (eg, fear of having a DS it difficult for you to improve?
on leaving the house). It is an OTs’ role to help manage risk and 5. What can you do if you notice that your symptoms and func-
increase independence by enabling people to engage in activities tion are getting worse?
through a process of supported positive risk taking. This concept 6. What are your goals for the next 3, 6, 9 and 12 months?
is explored in a recently published guidance document for OTs (using a graded goal setting approach).
in the UK, ‘Embracing risk; enabling choice’.49 The identified
principles can be applied to working with people with FND and
Concluding treatment
the group endorses its guidance. Further information is available
It can be difficult to bring an intervention period to an end if
in the extended online document.
the person continues to experience debilitating symptoms.
Commencing the intervention with a treatment agreement (as
Disability management described above) may help with this process. It is important
Care to maintain the therapeutic relationship, promote confidence
OTs can provide advice on the need for carers to assist with and self-­efficacy by fostering the person’s ability to continue
activities of daily living and the extent of care required. If carers with their self-­management plan. In this way, discharge should
are needed, care that provides opportunity for the person to be be framed not as concluding treatment but rather the point in
actively involved in tasks (facilitatory) rather than having a task which the person should independently continue to implement
completed for them (passive care) should be encouraged.
their self-­management strategies.
There will be some people who do not gain benefit from
Benefits rehabilitation and who remain symptomatic. If the person has
People with FND are entitled to health and social care bene-
had adequate access to specialist intervention for FND then a
fits/insurance but many find the systems involved difficult to
focus on disability management may be appropriate. However,
navigate. It may therefore be necessary and appropriate for OTs
given the fluctuating nature of FND, it is important to consider
to support applications for benefits and insurance claims. This
may involve liaising with agencies, supporting the completion that gains may still be possible in the future. Re-­engaging in
of paperwork and advocating on the person’s behalf regarding rehabilitation at a later date may be advantageous for some.
the potential benefit of undergoing specialist rehabilitation (eg, Booking in a follow-­up appointment to review progress, trou-
a letter outlining treatment options and the evidence base). A bleshoot issues and reset goals as the system allows is advised.
simple ‘to whom it may concern’ letter, describing a person’s Peer support organisations can be an important adjunct to
diagnosis, articulating the finer details of the condition (eg, vari- treatment, especially for people who continue to experience
ability of symptoms), impact on function and their support needs symptoms.
can be a valuable tool to help people negotiate with relevant See Box 2 below for a summary of the intervention principles
agencies. When patients are on the cusp of eligibility for benefits for OT and FND suggested in this document.
Nicholson C, et al. J Neurol Neurosurg Psychiatry 2020;91:1037–1045. doi:10.1136/jnnp-2019-322281 1043
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Author affiliations
Box 2 Summary of intervention principles for 1
Department of Therapy Services, University College London Hospitals NHS
occupational therapy and functional neurological disorder Foundation Trust National Hospital for Neurology and Neurosurgery, London, UK
2
(FND) Neurosciences Research Centre, University of London St George’s Molecular and
Clinical Sciences Research Institute, London, UK
3
Centre for Clinical Brain Sciences, University of Edinburgh, Western General Hospital,
►► Be empathic and recognise that FND is a real and disabling Edinburgh, UK
condition. 4
Centre for Clinical Brain Services, University of Edinburgh, NHS Lothian, Edinburgh,
►► Take the time to listen to the person’s story and build UK
5
therapeutic rapport. FND Hope UK, London, UK
6
Department of Neuropsychiatry, University College London Hospitals NHS
►► Agree treatment parameters at the start of your intervention. Foundation Trust, National Hospital for Neurology & Neurosurgery, London, United
►► Introduce the concept of self-­management at initial Kingdom
assessment. 7
The Lishman Unit, South London and Maudsley NHS Foundation Trust, London,
►► Provide education about the diagnosis and the person’s United Kingdom
8
symptoms. Community Rehabilitation and Brain Injury Service, West Lothian Community Health
and Care Partnership, Livingston, West Lothian, United Kingdom
Involve significant others in education and treatment. 9
Occupational Therapy Department, Massachusetts General Hospital, Boston,
►► Use variability of symptoms on examination and in day-­to-­ Massachusetts, United States
10
day life positively in treatment. Neurological rehabilitation out-­patient services, Astley Ainslie Hospital, NHS
►► Recognise and sensitively challenge unhelpful thoughts, Lothian, Edinburgh, Scotland, United Kingdom
11
Falkirk Community Mental Health Service for Adults, NHS Forth Valley, Falkirk,
beliefs and behaviours. Scotland, United Kingdom
►► Integrate specific treatment techniques into function and 12
National Centre for Mental Health, Birmingham and Solihull Mental Health NHS
show the person how to carry these over independently. Foundation Trust, Birmingham, United Kingdom
13
►► Focus on activity-­based (functional) rather than impairment-­ Department of Neuropsychology, James Cook University Hospital, South Tees
based goals and interventions. Hospitals NHS Foundation Trust, Middlesbrough, United Kingdom
14
Integrated Community Neurology Team, East Coast Community Healthcare CIC,
►► Be open and consistent in your verbal and written Lowestoft, United Kingdom
communications with the patient and other healthcare
professionals. Twitter Alan J Carson @alancarson15 and Jon Stone @jonstoneneuro
►► Where possible avoid use of compensatory aids and
Acknowledgements AJC acknowledges submitting paid testimony in court
techniques in the acute phase or when undergoing active actions on a range of neuropsychiatric topics, receiving payment as editor of
rehabilitation. Journal of Neurology Neurosurgery and Psychiatry, royalties from BMJ press and
►► Avoid use of splints or devices that immobilise joints. Elsevier for books and he is the unpaid treasurer of the Functional Neurological
►► Complete a relapse prevention and ongoing self-­management Disorder Society. JS receives royalties from UpToDate Inc and acknowledges paid
testimony as an expert witness in court in relation to functional neurological
plan as part of treatment. disorders. He is supported by NHS Scotland Career Fellowship and runs the free
website https://www.​neurosymptoms.​org/ for patients with functional neurological
disorders.
Contributors CN developed the assessment and intervention surveys, collated and
Limitations summarised the survey data. The occupational therapists in the group: CN, KH, SH,
Due to a lack of evidence for specific OT interventions, the HJ, CL, JM, LyM, LiM, LO, JeR, JaR and ES completed the online surveys and follow
recommendations provided in this paper are based on expert up discussions. All authors attended the consensus meeting and agreed on content
opinion. Where possible, we have drawn on evidence from to be included in the manuscript. CN, GN, KH, JS, MJE and AC prepared the first draft
of the manuscript. All authors were given the opportunity to review and revise the
multidisciplinary interventional trials and other therapies. These manuscript.
recommendations are aimed at adult patients. Interventions for
Funding MJE has received research funding from the Medical Research Council,
children and adolescents with FND are likely to be similar to National Institute for Health Research and the Guarantors of Brain; honoraria from
those described here but may differ in some areas. Treatment Merz Pharma, TEVA and UCB; and publishing royalties from Oxford University
advice for younger people is an important direction for future Press. GN receives research funding from the National Institute for Health
publications. Our international authorship increases the general- Research.
isability of the recommendations; however, the information may Competing interests None declared.
be less transferable in nations not represented. Patient consent for publication Not required.
Provenance and peer review Not commissioned; externally peer reviewed.

Conclusions/summary ORCID iDs

Clare Nicholson http://​orcid.​org/​0000-​0002-​8047-​6820
FND is a complex condition that has far reaching consequences Jon Stone http://​orcid.​org/​0000-​0001-​9829-​8092
on physical and psychological health, occupational participation
and quality of life. Current best practice is for multidisciplinary
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