An OT’s perspective on FND: The importance of client education and self-management
by Gillian Munday
This article is aimed at informing the reader on the key elements of FND management including the role of Occupational Therapists.
NOTE: resources are provided at the end for further reading and access to the various services referenced.
What is FND?
Functional Neurological Disorder or FND is a diagnosis that interfaces between neurology and psychiatry. It is typified by neurological-type symptoms that do not correspond to a clear organic cause (such as a stroke, brain injury, epilepsy or any other neurological condition). FND is an umbrella term for varying clusters of symptoms and includes movement and motor symptoms, sensory symptoms and / or cognitive symptoms. It can include episodes of altered awareness (including dissociative seizures) and a range of other symptoms. FND symptoms are in essence, abnormal patterns of symptoms that develop due to neuro plasticity of the brain and are driven by involuntary self- focused attention. FND is a diagnosis that frequently presents with the client experiencing significant distress, disability and reduced quality of life and is often accompanied by unemployment and social care utilisation (Nicholson, C, et al).
In understanding FND, there are a few key guidance points:
- The concept that the body and mind are separate (body mind dualism) should be avoided: FND may not have a ‘hardware cause’ but it arises as more of a ‘software problem’ in the circuits of the brain.
- Imaging studies are showing emerging evidence of abnormal brain circuits involved in FND including the sensorimotor, limbic, attentional, cognitive control and motor planning networks. Having FND is not the same as to trying to display FND symptoms.
- The complexities of our human body and brain are incredible but also create opportunities for things to go wrong. Consider the biochemistry of cognition, predictive mapping (how our previous experiences influence our expectations) and how everyone has different thresholds in interoception and sensory processing. Add to that, the various factors that influence when our coping mechanisms give way to stress, causing trauma to manifest. Even now, we’re still learning more about the impact of adverse childhood events (ACE) and how prolonged exposure to cortisol and adrenalin sensitises the receptors in our nervous system.
- Understanding the causes of FND is best done so through biopsychosocial and aetiological frameworks, looking at predisposing, precipitating and perpetuating factors for each of the biological, psychological and social aspects of a person’s life.
Risk factors arise out of these as illustrated in the table below (from Nicholson, C, et al)
| Factors | Biological | Psychological | Social |
|---|---|---|---|
| Predisposing vulnerabilities | Illness /disease History of previous functional symptoms |
Personality traits Poor attachment Poor coping style Emotional disorder |
Adverse life events Childhood neglect Difficulties in interpersonal relationships Symptom modelling Financial difficulties/deprivation |
| Precipitating mechanisms | Physical injury/state Abnormal physiological event |
Panic attack Perception of life event as traumatic/negative |
Adverse life events or stressors |
| Perpetuating factors | Plasticity in sensory or motor pathways Deconditioning Fatigue Chronic pain |
Illness beliefs (person, significant others) Feeling disbelieved Maladaptive behaviours Co-morbidities |
Diagnostic uncertainty Reliance on care and benefits Compensation claims Ongoing social stressors |
Of relevance to the Case Management sphere is the potentially negative impact that diagnostic uncertainties and ongoing compensation claims can have on perpetuating FND symptoms. In terms of rehabilitation, the very same neuroplasticity that allows new pathways to develop in the brain during recovery, can become a perpetuating factor in entrenching FND symptoms if they are left to continue.
As with many neurological conditions, a clear prognosis can be difficult to determine, however several guiding factors have been established: FND symptoms are commonly the result of potentially reversible miscommunications between the brain and body. There is growing evidence that early diagnosis, education and access to evidence-based FND specific rehabilitation can aid recovery but that this may follow a pattern of symptom remission and exacerbation. The goal of FND rehabilitation should be to help people to move beyond the diagnosis or label and to find a way forward to improving quality of life.
Evidence does show that some people do not gain benefit from rehabilitation and remain symptomatic. Progress is often dependent on active participation of the individual in goal setting and self-management.
The Role of Occupational Therapy in FND management
By definition, Occupational Therapy helps you live your best life at home, at work – and everywhere else. It’s about being able to do the things you want, like and have to do … to look after your physical and mental health, and your emotional and spiritual wellbeing (RCOT website)
Occupational Therapists are dually training in physical and mental health rehabilitation which makes them uniquely suited to working with clients with FND symptoms. Occupational therapy intervention is intrinsically focussed on meaningful activity, practical application and active participation in daily activities and occupations, within a societal and cultural context. It supports individuals to focus on function rather than impairment, which is important in FND rehabilitation.
Occupational Therapy assessment includes a thorough history taking within an etiological framework. It includes an initial focus on FND symptoms and severity, exacerbating and easing factors, impact on function and routines and activity patterns in order to establish a baseline of the FND impact. Goals need to be identified by the individual ‘in their own words’ but with a flexible approach to allow relapse and remission.
The Occupational Therapy consensus guidelines published in 2020 (Nicholson, C, et al) identify that Occupational Therapy interventions for FND are distinct from other neurological rehabilitation approaches. The document identifies key aspects of occupational therapy contributions to FND rehabilitation noting that it should be based on a biopsychosocial and aetiological frameworks with a focus on education, rehabilitation within functional activity and taught self-management strategies to encourage building an internal locus of control. The guidelines note that FND diagnosis prior to Occupational Therapy input is beneficial, adding weight to educational initiatives but that even without formal diagnosis, treatment can continue as the focus is on function and the impact of symptoms rather than being reliant on a diagnosis. Occupational Therapy input can be relevant from symptom onset to support in the community. There is consensus that benefit from Occupational Therapy may be reduced where there is poor engagement in goal setting, poor motivation for change or where client focus is on provision of aids and adaptations.
Occupational Therapy treatment approaches include physical rehabilitation through graded activity practice and application to tasks, routines, habits and roles in order to encourage confidence building. Specific areas where Occupational Therapy interventions can help include:
- Functional motor symptoms
- Functional visual impairment
- Functional cognitive impairment
- Dissociative (non-epileptic) seizures
- Anxiety management
- Fatigue management
- Hyperesthesia / sensitivity to sensory stimuli
- Pain management
- Risk, care and disability management
- Activities of daily living
- Vocational rehabilitation and welfare benefits
- Housing
- Relapse prevention / staying well
- Discharge from therapy management
Vocational rehabilitation is particularly significant as there is recognition that both paid and voluntary employment have significant health benefits to people with FND. Occupational Therapy can support individuals to sustain employment and manage their condition within their work or study contexts through targeted interventions.
Consensus opinions suggest that while welfare rights, blue badges and / or aids and environmental adaptations are generally unhelpful in the early stages of FND rehabilitation, cases should be considered on an individual basis: Aids and equipment may be appropriate where they are short term, well monitored and aid return to function or where the solutions are to support chronic treatment-resistant symptoms or disability.
Evidence suggests that splinting solutions for FND are generally not recommended as they can increase attention and focus to the area, immobilise joints and muscles, exacerbate symptoms and in some situations result in increased pain or regional pain syndrome.
Collaborative Care and the MDT
Literature identifies the importance of Multidisciplinary Team (MDT) collaboration in the management of FND, with increasing development of specialised FND clinics worldwide, focussing MDT involvement in diagnosis, therapeutic approaches and research. In recent years discipline-specific consensus guidelines have emerged for individual professions within the MDT, emphasising the importance of biopsychosocial approach to treatment plans. The value of MDT roles such as Physiotherapy and Occupational Therapy have been identified in helping to set goals within function and meaningful activities. Societies and professional groups have also been created to support professionals working with FND.
Formal FND diagnosis is routinely made by a neurologist due to the detail involved in distinguishing the condition from potential co–morbidities. FND is not a diagnosis of exclusion and can be made by identifying positive clinical signs. Abayek and Perez et al discuss these positive signs in detail in Diagnosis and management of functional neurological disorder, citing examples such as positive Hoovers sign, tremor entrainment and distinguishing signs of functional seizures.
FND Education
The value of client education and empowerment in management of FND is well established, noting the essential role this has in engaging patient participation in rehabilitation.
When delivering FND education it is important to be aware of language and terminology, sensitivity to potential stigmas around FND diagnosis and potential client disempowerment due to feeling misunderstood and abandoned by healthcare professionals and services. FND education should include validation that FND is a real and disabling condition that has positive clinical signs and is outside the person’s direct control. It is important that education emphasises the role of brain-body miscommunications, that symptoms are potentially reversible with effective self-management to monitor health, triggers and focus attention away from symptoms and on to function.
Initiatives to support the importance of self-management and a 24- hour approach to therapy are extending with the support of technology and online support resources. Resources that have emerged include clinician approved apps like MyFND and a range of organisations and websites that provide support, education and advocacy
Conclusion
FND is a diagnosis that has a growing evidence base around aetiology and management with emerging consensus guidelines that prioritise the importance of client education and self-management. Occupational Therapy has a valuable role in providing FND specific assessment and interventions and supporting the client (and case managers) in client education, developing self-management approaches and instigating active participation in goal setting and meaningful activities of daily living.
To request an assessment for a client with FND, please contact The OT Practice Case Management Team on 0330 0249910 (option 4) or email enquiries@theotpractice.com
Recommended resources
Resources for people living with FND
FND Hope
FND Hope UK
FND Dimensions
FND Action
Resources for professionals
Neuro Symptoms
FND Society
UK FND Network
Optimal clinical pathway for adults with Functional Neurological Disorder: UK
Functional Neurological Disorder National Pathway: Scotland
Online course
Functional Neurological Disorder: A Healthcare Professional's Guide
References
Aybek S, Perez D. Diagnosis and management of functional neurological disorder, Neuropsychiatry. Clinical Neuroscience 33:1, Winter, 2021.
Gardiner P, MacGregor L, Carson A, Stone J. Occupational therapy for functional neurological disorders: a scoping review and agenda for research. CNS Spectrums, 23, 205–212, 2018.
Milano B, et al. The neurobiology of functional neurological disorders characterised by impaired awareness. Psychiatry, 16 March 2023. Available at: https://www.frontiersin.org/journals/psychiatry/articles/10.3389/fpsyt.2023.1122865/full
Nicholson C, Edwards M, Carson A, et al. Occupational therapy consensus recommendations for functional neurological disorder, 2020. Available at: https://jnnp.bmj.com/content/91/10/1037
Functional Motor Disorder: How common is it. NICE. 2024. Available at: https://cks.nice.org.uk/topics/functional-neurological-disorder/background-information/prevalence/
