Functional Neurological Disorder (FND) manifests in both cognitive, psychological and physical presentations, hence the presence of functional deficits – so a holistic approach through neuro-rehabilitation can be vital.
In a study from brain injury rehabilitation specialists Reach, the team reports great progress through its interventions, resulting in some outstanding functional outcomes. Here, they examine the condition and whether a functional approach does indeed give the best possible outcomes for these clients.
As a neuro-rehabilitation organisation, we are seeing more and more cases of Functional Neurological Disorder (FND) being referred to our clinical teams. These referrals are coming to us directly from insurers, lawyers and case managers, as there is a need for a rehabilitative approach to enable progression on the pathway to recovery.
We thought the outcome of our findings may be of interest to NR Times readers, as we will all see more of this client group in need of our particular skills and experience.
The background, research and clinical evidence
The study of what we now call FND may date back millennia. In fact, its roots stem from ancient Egypt, when it was believed that movement of the uterus would lead to hysterical disorders, while the ancient Greeks were moved to name the condition for the Greek word for the womb, hustera. Scholarly thinking didn’t change for some time, with the father of modern medicine also holding the belief that hysteria was a uterine disorder, but one that originated from the lack of sexual intercourse which caused the release of toxins into the body. Thankfully, medical thinking has leapt ahead and men may no longer fall upon the weak lines of Hippocrates to persuade their potential suitors, but the traumatic hysteria label persisted well into the 20th century, perpetuated by some of the great names in the annals of neurology, such as Charcot and Freud.
Even in relatively contemporaneous times, FND has had a difficult road to proper recognition. The labels changed but diagnoses of conversion disorder followed almost identical criteria to those of hysteria, further justifying the characterisation of a preponderance of symptoms as psychosomatic, or patients as simply malingering, not indifferent to the way that many were treated when presenting with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME), or ‘Yuppie Flu’ to give it its proper pejorative.
In recent decades there has been some serious investment and research into FND and it has become a much more widely recognised and accepted disorder within the neuropsychology community. Whilst it is still listed (perhaps without merit) as a rare disease, staggeringly, in 2020 the Department of Neuropsychology at NHS Grampian reported that approximately one third of all patients attending their general neurology clinic would go on to receive a diagnosis of FND.
What remains rare is that FND is one of a small number of disorders that is categorised in the International Classification of Diseases (ICD-11) as both a psychological disorder and a neurological disorder. We feel that this is of benefit to both clients with FND and to the clinicians that treat it, as it aids multi-disciplinary team collaboration across neurology and psychiatry specialisms, and specialist clinics that exemplify this collaborative approach are growing in number across the UK.
Whilst Professor Selma Aybek and Dr David L. Perez note that duality of classification “creates coding problems between mental health and neurological disorders that affect which clinical services will be reimbursed, or by which expert patients should be evaluated in medico-legal cases” in their excellent review, ‘Diagnosis and management of functional neurological disorder’, this issue may be of less relevance in jurisdictions that do not reference the DSM-5 model. Besides this, the increase in specialist FND services may render the issue of which service to reimburse a moot one.
FND is in a category of functional disorders that primarily comes from within the functioning of the nervous system, as opposed to any identifiable pathophysiological disease, which is something it shares with both irritable bowel syndrome and fibromyalgia. Dr Bichard of The Walton Centre describes it as “a problem with the functioning of the nervous system in a structurally normal brain”. Professor Jon Stone et al use the relatable analogy, in their highly recommended paper ‘Recognising and explaining functional neurological disorder’, of calling it a “Software rather than a hardware problem”.
Diagnosis was previously one of exclusion, which left questions looking for answers, some of which could be provided by psychoanalysis. Relatively recent developments that have increased our understanding of FND have meant that diagnosis is now arrived at from positive, rule-in signs that can be determined by tests performed under the direct supervision of a neurologist or a neuropsychiatrist, with the presence of psychological stressors being recorded as an adjunct to any of the accepted criteria. All of the accepted positive motor signs for FND are neatly presented in tabular form in the Aybek and Perez review. Prof. Stone (Stone et al, 2009) also highlight the low misdiagnosis rate of less than five per cent, cautioning against fear of misdiagnosis.
So, who can get FND? (Spoiler alert! It’s anyone!)
You may be surprised that anyone can be vulnerable to FND, and while there are a number of factors that are known to increase risk, these are neither definitive nor exclusive and there is still no consensus on precisely what causes the disorder to manifest. However, when considering a patient with FND It’s useful to evaluate them against the 3Ps of the cognitive behavioural model.
Predisposing (factors): illness; personality traits; life events; stressors
Precipitating (triggers): injury; traumatic event (either physical or psychological)
Perpetuating (symptoms): what keeps the symptoms alive? Fatigue, chronic pain, illness beliefs, co-morbidities (anxiety/depression) social stressors and also being within the compensation process.
More commonly, people diagnosed with FND will relate to a number of the above.
What are the signs and symptoms we need to be looking for?
Since classification is clearer and patients can now gain an unequivocal FND diagnosis, how does this look in practical terms?
As we have seen across Reach, FND clients can experience a wide range and combination of symptoms that are physical, sensory and/or cognitive. This is where the rehab approach needs to be focussed and the assessment needs to be very specific to gain an accurate baseline.
Typical symptoms
There are a range of typical signs and symptoms within the disorder, the more common ones come under three clinical headings.
Motor dysfunction
- Functional limb weakness and paralysis
- Functional movement disorders including tremor, spasms and jerky movements – all leading to problems with walking
- Functional speech symptoms including slurred or stuttering speech in addition to whispering speech (dysphonia).
Sensory dysfunction
- Functional sensory disturbance which includes altered touch sensation including numbness, tingling or pain in the face, torso or limbs, (this often occurs unilaterally, which has been the case with several Reach FND patients)
- Functional visual disturbances, including loss of vision or double vision.
Cognitive symptoms
- Dissociative (non-epileptic) seizures presenting as blackouts and faints
- Fatigue – cognitive and physical
- Sleep problems
- Anxiety
- Memory problems
- Low mood
- Problems with planning/organising.
It is important to remember that these symptoms are quite real and often very disabling, and can co-exist alongside a diagnosable neurological condition (in around 10 – 20 per cent of cases).
Some key points:
- Neurological disease is one of the main risk factors for FND
- About one sixth of neurological outpatient diagnoses are for FND, this is second only to headache and migraine
- FND is one of the commonest diagnoses in neurology.
(Stone et al)
Amongst other concerns for clients are that functional problems often result in issues within work settings, and they can also experience difficulties in social settings and encounter problems in their relationships.
As we have seen within our clinical practice at Reach, symptoms can vary and fluctuate, and we have frequently observed clients in remission, followed by sudden relapse.
It is therefore prudent to identify the ongoing difficulties for FND patients, and to establish an appropriate treatment pathway, whilst carefully managing their expectations to ensure that they are able to achieve realistic goals.
Best practice – the rehabilitation pathway
We do not make the claim that Reach are FND experts in a medical, or a medico-legal sense. However, we are gaining more and more clinical experience of this disorder, with a number of our clinicians having worked with FND patients on both a community basis and on an inpatient basis within the NHS. We are drawing from our clinical experience and the available research evidence to provide the high-quality rehabilitation service these clients need and deserve. I’m keen to share our practical knowledge and experience, so that we may contribute in any way we can to advance our clinical practice and support other providers within this sector.
As we have discussed, FND manifests itself in a multitude of ways and symptoms can vary in severity. The capricious nature of the disorder often makes it very difficult for clients to plan and manage their day-to-day lives, which can be very disabling, but also where our rehabilitation treatment pathways can be of most benefit. It is well noted that neuro-occupational therapists are a good fit in the treatment toolkit of a multi-disciplinary team co-ordinating the complex needs of those with FND.
Within all of the literature reviewed, it states that “communication is key”. Presenting a positive diagnosis is a crucial part of the treatment, whilst not forgetting that it is equally important to supply an explanation of how the diagnosis was made. It was found in a study (Duncan et al, 2011) that proper communication of the diagnosis was followed by cessation of functional seizures in greater than 40 per cent of new-onset patients. This is a staggering percentage.
What is the evidence-based prognosis of this neurological condition?
As one may expect, it is noted that outcomes vary considerably and so confident statements about prognosis are ill advised. Primarily, clinical outcomes are dependent upon many biopsychosocial factors and it is currently unclear how prognosis varies if a client is afforded optimal care and their pathway takes advantage of some of the newer treatments available. The research in this area is ongoing and we follow progress with interest.
There are however, some trends on outcomes:
- Good outcomes are more likely where the patient is younger and/or symptoms are of shorter duration; longer duration of symptoms predicts poorer outcomes
- Co-morbid anxiety and depression predict worse outcomes in some studies
An important point to note is that, like any other condition, a rehab team can only predict accurate outcomes once rehabilitation sessions have started and even then, you can never be totally confident. It is stated that, even if clinical studies are not totally confident on predicting outcomes, every FND client deserves the opportunity to maximise their functional performance through rehabilitation.
Key principles of the optimal treatment approach
Clinical assessment (subjective and objective)
As with all conditions it is import to complete a thorough assessment, being clear and transparent about any observations and ensuring the use of appropriate terminology.
Clearly explain the diagnosis
Take time to ensure that the client understands the diagnosis, explore what the diagnosis means to them, and demonstrate how the diagnosis was arrived at.
Set realistic goals
Setting goals is important, this enables patients to be at the centre of their treatment, to feel seen and heard, and for them to see the progress that they are making. Goals should be realistic and they should be achievable, in terms of both the ability of the client and the available time for therapeutic treatment.
Grade treatment/activity
Treatment should be graded in order that goals can be met. The best approach is to start easy and slowly build complexity, so that achievements are noted and progress is easily measurable.
Regularly communicate progress
It is really important to be honest about progress, if goals are not being achieved it might not be the right time for treatment and continuing to strive towards them may put clients under additional pressure.
Educate and empower self-management
As with most conditions, empowering patients to understand their own condition and enable them to manage it effectively is paramount, so providing education is vital. A patient will learn what works and doesn’t work for them, our role is to provide them with the information they will use to develop their management strategies and to supply them with guidance where it is needed. Some examples of self-management strategies include: grounding techniques; breathing exercises; relaxation; physical activity.
Technology can also provide support for a number of patients, for example, the highly recommended MyFND app.
An historic case of misdiagnosis
Here we briefly discuss a case of misdiagnosis, selected because it highlights the challenges that arose when there were no rule-in signs for the clarity of diagnosis. This young man was working as a gamekeeper prior to his injury and was living independently. Some of the main features of his case are:
- He was a young man (23 years old)
- Admitted to hospital with a TBI
- Developed a new movement disorder
- There was a lack of understanding of FND
- Client had a mistrust of professionals
- Diagnosed with FND post-discharge
He was an inpatient around 15 years ago, which was before we had an in-depth understanding of FND. He presented with a pattern of symptoms that were not in keeping with his brain injury, which resulted in confusion amongst the professionals who lacked the knowledge of, and exposure to FND. The subsequent lack of understanding lead to a breakdown in relationships due to the client feeling that he was not believed. This would not happen today, now that we have clear classification of symptoms.
Subsequently, this patient was given an FND diagnosis once he was seen in the community and he went on to work well with the team of neuro-occupational and physio therapists to achieve his personal and functional goals.
With the continual increase in awareness of FND and with access to clear treatment plans, cases like this will no longer occur.
Concluding themes
In summary, some of the main take-aways from our clinical work and literature reviews are that:
- FND is a common condition and can be hugely disabling
- FND is real and should be diagnosed using positive signs
- FND is thought to result from a combination of biopsychosocial factors
- FND diagnosis should be clearly explained to the client and reinforced by the MDT
Recommended themes to treatment
Current guidance for the treatment of clients with FND advises practitioners to duly consider the following:
- To educate the client and the family/carers
- To seek automatic/normal movement strategies and integrate them into function
- To avoid compensatory strategies, aids and adaptations where it is safe to do so
- To develop self-management strategies including building awareness of triggers
It’s important to acknowledge that the body of research is growing, creating an ever-evolving picture, and our team of experienced clinical specialists work closely alongside multi-disciplinary teams to ensure that our clients have access to innovative treatments for FND.
- For more information on how Reach can support with FND and other areas of rehabilitation, visit here
