Neurology Update Meeting 2023 – FND in focus

This year’s Irish Institute of Clinical Neuroscience Annual Neurology Update Meeting was dedicated to the topic of functional neurological disorder. Priscilla Lynch reports

The 22nd IICN Annual Neurology Update Meeting, directed by Dr Aoife Laffan, Consultant Neurologist at St James’ Hospital, Dublin, took place on Friday, 6 October 2023, at the Radisson Blu St Helen’s Hotel, Stillorgan, Dublin.

This year’s meeting took on a different format to other years, with the focus of the meeting dedicated to functional neurological disorder (FND). Dr Laffan’s specialist interest is in FND, and she trained/worked with many of the UK experts that spoke on FND during the day.

“FND has been shown to be the second most common presentation to new neurology clinics, and so, despite some reservations within the neurology community that patients with FND would be better served solely by our colleagues in psychological medicine, these patients continue to
seek our services, urging us to take responsibility to appropriately diagnose and assist in their management,” said
Dr Laffan.

The meeting was highly relevant for specialists and generalists who manage neurological illness, presenting the latest developments in diagnosis and treatment from leading
international practitioners in FND care and research in a practical ‘What you need to know’ format, with short
talks providing clinical insights for the management of
FND patients.

“We welcomed many delegates, not only from neurological specialties, but also psychiatry, psychology, general practice, nursing, physiotherapy, and occupational therapy, underscoring the important role of a multidisciplinary approach in optimising outcomes,” Dr Laffan said.

Opening the meeting, Dr Laffan welcomed guests, chairpersons, delegates, and sponsors to the meeting. She especially welcomed her expert guest lecturers, those who had travelled from Edinburgh and London, and those who would join the meeting online from Essen, Germany, and from Toronto, Canada.

She then outlined the programme for the day, which was divided into five sessions.

First session

Prof Colin Doherty, Consultant Neurologist, St James’ Hospital, chaired the first session of the meeting.

During this session, Dr Laffan delivered a lecture entitled ‘FND: The past, present and future’, and Dr Stoyan Popkirov, University Hospital Essen, Germany, delivered an online lecture addressing ‘functional seizures’.

Dr Laffan noted that there was historically, and still is, significant stigma around FND, and a lack of understanding and negative attitudes towards the disorder, with implications that the patient may be
malingering. Thankfully, there has been a lot of progress in recent years in relation to increased disease understanding and improved diagnosis, she said.

Research is really helping us understand the mechanisms of FND

“The last two decades have seen a surge in the interest and research in FND, and ‘functional neurological disorder’ is now the primary term used in the DSM-5, as of the text revision in March 2022,” Dr Laffan commented.

She said stressful life events, such as a history of childhood or adult neglect or abuse, “can increase the risk of developing FND by about four-to-six-fold,” but are not the cause as such, and other factors are involved.

“Research is really helping us understand the mechanisms of FND … It is a brain network disorder; functional symptoms reflect a dysfunction across a number of neural circuits, which then map on to specific constructs within the brain. These constructs include attention, prediction, interoception, emotional processing, and agency.”

The presentation of FND is generally brought about by a trigger, which can be psychological, or another medical illness or minor injury or drug side-effect. There may also be other co-morbidities, which should be treated separately, she added.

Diagnostic uncertainty, misdiagnosis, and poor communication remain a challenge in FND care, Dr Laffan noted. She pointed to useful resources for patients and healthcare professionals such as www.neurosymptoms.org, and the Functional Neurological Disorder Society (www.fndsociety.org). However, she stressed the importance of direct discussion and information dissemination with the patient. “We need to communicate the diagnosis. People just want to know what’s wrong with them. We need to do that effectively, and the aforementioned resources are supplementary to that.”

While there is currently no Irish patient support organisation for FND, work is ongoing to establish such a support, Dr Laffan revealed.

She also drew attention to the fact that there is currently no official dedicated clinical service for FND in Ireland and there is also a need for improved medical education on the topic.

“A business case is slowly but surely coming together, but we desperately need funding to support a large multidisciplinary team, one that is trained and experienced in FND,” Dr Laffan said.

She maintained that one central service will not be able to deal with all cases of FND in Ireland – there will have to be input across the country/in the community.

The next speaker of the day, Dr Popkirov, told delegates that there is a need to improve recognition of functional seizures. He said that about 5 per cent of recurrent syncope are functional attacks, while key signs that seizures are functional include eyes being closed, eyelid flutters, provocation through discomfort, ictal crying, a fluctuating course, and thrusting.

Video EEG is the gold standard diagnostic modality for assessing seizures, Dr Popkirov said.

Speaking during the questions and answers session, Prof Doherty said that videophones have revolutionised the ability to assess seizures that occur outside of the clinical setting, with patients and their families able to record them, and have the medical team then review them.

Second session

Dr Conor Fearon, Consultant Neurologist, Mater Misericordiae University Hospital, Dublin, chaired the second session of the day.

Dr Sarah Lidstone, KITE Research Institute, University of Toronto, Canada, presented her lecture online, entitled ‘Functional movement disorder’. She gave a number of practical tips on how to deliver a diagnosis of FND including: Give a clear diagnosis and do not overemphasise the diseases patients don’t have; demonstrate the rationale for the diagnosis – show them their positive signs; convey that it is common and there is potential for reversibility; if you want, provide an explanatory model; provide written information/website (www.neurosymptoms.org); and see the patient for follow up/triage for further treatment.

Dr Lidstone acknowledged that sometimes patients struggle to accept their diagnosis, and that the patient has to accept diagnosis before treatment can be started, so they may need some time before that can happen.

She stressed that FND is treatable, and that recovery is about self-management not symptom management/total resolution. Treatment cannot be done to the patient – it is opt-in, and involves an individualised multidisciplinary approach, which can include speech/physio/occupational therapy for muscle weakness, movement awareness/training, mindfulness, psychotherapy, medical treatments (antidepressants, seizure medications, etc), and being aware of triggers and self-distraction techniques.

Also speaking during this session, Dr Ingrid Hoeritzauer, Royal Infirmary of Edinburgh, Scotland, lectured in person on the topic of ‘Other functional neurological disorders’, including cauda equina syndrome and bladder/bowel/sexual dysfunction. She noted that FND is common among patients attending pain clinics.

Like other speakers on the day, Dr Hoeritzauer stressed the importance of taking patients with FND symptoms seriously, believing them, and telling them it is common, while explaining the rationale behind the disease diagnosis, and providing some hope that treatments exist, and knowledge is continuing to improve.

Speaking to the Medical Independent (MI), Dr
Hoeritzauer said clinicians need to bring up the more sensitive symptoms that FND patients can experience, so that they can be treated for them.

“Bring them up. People are very rarely going to talk about bladder, bowel, and sexual dysfunction and pain unless you open the door for them.

”And these issues do have a massive impact on patients’ quality-of-life… and there are good treatments for things like stress and urge incontinence, urinary retention. So overall there are often modifiable issues that have massive quality-of-life implications for patients, and if we open the door for them, patients will have better outcomes and improved day-to-day living.”

I think the ‘take home’ messages are that FND is a common, genuine disorder

Third session

Prof Siobhan Hutchinson, Consultant Neurologist, St James’ Hospital, Dublin, chaired the third session of the day.

During this session, Dr Laura McWhirter, Consultant Neuropsychiatrist, Royal Infirmary of Edinburgh, delivered a lecture entitled ‘Functional cognitive disorder and long Covid’, and Prof Jon Stone, Professor of Neurology, University of Edinburgh, discussed ‘Sharing the diagnosis of FND and the assessment as treatment’.

Dr McWhirter explained how FND is under-recognised and is different from dementia, though it is characterised by memory and attention difficulties. It can come and go, stay the same or even improve. Discussing long Covid, Dr McWhirter outlined the commonly reported symptoms of brain fog and fatigue, dizziness, and inattention.

Prof Stone, a leading world expert on FND, gave a very practical presentation, outlining the importance of asking patients about all of their symptoms, including fatigue, dizziness, sleep, and memory.

Like previous speakers, he stressed the importance of communication and giving patients a clear diagnosis and explanation of what FND actually is. “Patients are often only told what they haven’t got, which is not adequate or helpful; you need to start telling them what they actually have – a disorder of function,” he said.

Prof Stone maintained that a follow-up review with the patient is useful. This should involve asking them about what they thought of the information given previously. Educating the patient has been shown to be the most important treatment for FND, and acceptance of the diagnosis is a positive predictor for a better outcome, and is key for actually commencing treatment, which should be multidisciplinary and individualised, he explained.

“Treat it like any other condition, like MS or Parkinson’s, that really helps patients engage with the diagnosis… It should never be used as a ‘dustbin diagnosis’ because the scan is normal or you don’t know what else to call it, or because the patient has psychiatric issues. Those are really good reasons to get it wrong. FND, in particular, really ought to diagnosed by someone with expertise in neurological diagnosis, normally a neurologist, and it is definitely based on positive features, of which there is a whole range such as seizures, tremor, dizziness, cognition issues. So that is a big change that has happened in the last 10-15 years,” he told MI.

Fourth session

Dr Karen O’Connell, Consultant Neurologist, Tallaght University Hospital, Dublin, chaired the fourth session. During this session, Prof Alan Carson, Royal Infirmary of Edinburgh, delivered a lecture entitled ‘Psychiatry and psychology for FND’, while Dr Glenn Nielsen, St George’s University Hospital, London, UK, delivered a lecture entitled ‘Physiotherapy for FND’.

Outlining treatment options, Prof Carson said pharmacology for FND follows the normal guidance for anxiety and depression, if these are present, while psychotherapy falls under two main types: Cognitive behavioural therapy and psychodynamic therapies.

In relation to treating seizures, he commented: “My observation is that people don’t have seizures when their attention is focused. Therefore, tasks which co-opt attention will prevent seizures.”

Dr Nielsen, who leads a specialist NHS physiotherapy service for functional motor disorder (FMD), and is currently leading a multicentre randomised controlled trial of specialist physiotherapy for FMD (physio4FMD.org), and a National Institute of Health and Care Research-funded observational study of functional somatosensory symptoms, discussed how physical therapy/rehabilitation is a key element of multidisciplinary FND treatment.

He showcased a number of case studies to illustrate his team’s treatment approaches, including movement retraining with redirection of attention, and teaching self-management techniques.

Again, echoing other speakers on the day, he emphasised that education and agreement with the patient about diagnosis and the treatment approach is the foundation of treatment of FND.

Fifth session

Prof Brian Sweeney, Consultant Neurologist, Bon Secours Hospital, Cork, chaired the final meeting session. During this session, Prof Stone delivered his second lecture of the day, entitled ‘FND is not malingering’.

“There is a lot of concern about that and I would say that doctors have traditionally used that as an excuse not to be interested in this problem.

”I think feigning and malingering does occur, and I discussed how to look for that, but I think there is general agreement that it is rare, and is not really a particular clinical issue,” he told MI.

During his talk, Prof Stone presented a range of clinical and neuroscience evidence against the claims patients are feigning/malingering. His points included the fact
that FND has looked the same over time and across countries, and MRIs show actual brain changes compared to controls.

“FND is disabling and real,” Prof Stone maintained.
The session then discussed a number of clinical cases, and took questions from meeting delegates.

Summary

“Each lecture on the day generated much discussion and showcased the remarkable progress of this sub-specialty, including our understanding of the role of multiple neural circuits in the pathomechanism of FND, which complement the previously described psychological models and offer possible neurobiological insights for symptom development.

“I sincerely hope that this year’s Neurology Update Meeting marks a significant stride towards much needed FND care in Ireland,” Dr Laffan concluded.

Speaking to MI, she said: “I think the ‘take home’ messages are that FND is a common, genuine disorder. We need to communicate the diagnosis with people – it is not a diagnosis of exclusion.

“And there are things we can do to improve care for these patients… we also need to educate other physicians that this is a condition like any other condition and it needs to filter in to the norm of what we are doing day-to-day in our work.”

For more information, see www.iicn.ie.