RESEARCH AND DEVELOPMENT FEATURE
Functional neurological disorder ( FND ) is a condition that
can cause diverse symptoms , including weakness , movement disorders ( tremor , jerks and dystonia ), sensory changes , cognitive deficits and seizure-like events
( dissociative or non-epileptic seizures ) ( Espay et al 2018 ).
These symptoms can have a major impact on people ’ s ability to engage in their daily occupations , impacting on quality of life ( Carson et al 2011 ).
In 2017 , Clare Nicholson , occupational therapist at The National Hospital for Neurology and Neurosurgery in London , invited occupational therapists from England , Scotland and the US with clinical experience of FND to participate in a Delphi study exploring occupational therapy assessment and interventions for FND .
This aimed to generate a body of clinical knowledge and experience , which would provide the basis for FND occupational therapy consensus recommendations .
The recommendations were developed in collaboration with expert multidisciplinary clinician-researchers and patient group representatives ; with the primary aim of educating and supporting occupational therapists to provide effective interventions for people with FND .
Kate Hayward explains : ‘ Having worked with people with FND for a number of years , I have seen the benefits they can gain from engaging in occupational therapy , alongside interventions from physiotherapy , speech and language therapy , psychological therapy , nursing and medical colleagues .
‘ Supporting them to understand , learn to manage their condition and begin to re-engage in occupations has been very rewarding , but also challenging at times , and I have benefitted from support from my colleagues throughout .
‘ However , I am aware that this support is not available for many occupational therapists who are trying to manage these often complex patients on their own . Therefore , when my colleague Clare Nicholson set the goal of writing FND occupational therapy consensus recommendations I was keen to be involved .
‘ That was in 2017 , and I think we were all naïve as to how long this would take and how much work was involved .’
She adds : ‘ Being a member of the consensus group has given me many opportunities : meeting fellow occupational therapists who are passionate about raising the profile of our profession for this patient group ; sharing and learning treatment techniques ; meeting wider multidisciplinary team members who are leaders in this field and who value the role of occupational therapy ; liaising with international occupational therapy colleagues and supporting writing a journal article .
‘ As a clinician , it has given me an insight into research processes and the benefits of clinical voices coming through within this . With the guidelines now published , I hope that they will be a useful resource for occupational therapists working with people with FND and that they will encourage future research in this area .’
Carrie Lumsden was similarly enthusiastic about the project . ‘ When Clare Nicholson approached me in 2017 , to ask if I was interested in collaborating on developing the first FND occupational therapy consensus recommendations , I didn ’ t hesitate to commit ,’ she says .
‘‘
When we work together , we don ’ t need to have all the answers individually , but we have a strong , collective voice that can educate others and promote the value of our profession .
‘ Not because I had all the answers , or thought that it would be a straightforward task , but because Clare was the only occupational therapist I knew who was brave enough to even consider leading on this .
collective voice .’
‘ She had the vision and belief that it was achievable , and the confidence to recruit some of the world ’ s leading clinicians in FND practice and research for support in getting the project off the ground .
‘ We were at the third International FND conference in Edinburgh at the time , watching other medical and therapy disciplines present their research and I had begun to feel uneasy that there wasn ’ t going to be an occupational therapist behind the lectern . ‘ We both knew that occupational therapy had much to offer this misunderstood and challenging clinical group , but we didn ’ t have a
Carrie also had another reason to get involved – a personal one , which she goes onto explain . ‘ My then 13-year-old daughter had recently been diagnosed with FND . She had probably had symptoms for several years , but her co-morbid epilepsy distracted us from what else was happening neurologically .
‘ You could say that her diagnosis was ironic , especially as I had been working in the field of FND for around 15 years . My work soon became my life , with confused boundaries between the two .’
She adds : ‘ There were no NHS services in our area designed to support teenagers or their families affected by FND and my life became a 24 / 7 therapy programme that I couldn ’ t shut the door on or take a holiday from .
‘ During an admission to our local high dependency unit , the therapists admitted that they didn ’ t know how to support my daughter when she emerged from almost a week of relentless seizures , unable to stand or walk .
‘ I was left to provide her rehabilitation , which I did willingly , but it challenged me personally as I really just needed to be Mum .’
She goes on : ‘ My lived experience as a parent to someone with FND has opened my eyes to the desperate reality that young people and their families are not being adequately supported by
OTnews February 2021 55