Changing the culture of care around Functional Neurological Disorder and Functional Seizures
They say knowledge is power, and a team of clinicians from our Network have set out to change the narrative around the treatment of Functional Neurological Disorder (FND) and Functional Seizures (FS) through the power of knowledge sharing.
The Mind-Body team have published a special report on the treatment of FND in the Harvard Review of Psychiatry and created a first-of-its-kind practical manual for the treatment of FS, aiming to educate and empower clinicians around the world in the treatment of these conditions in paediatrics.
While interest in FND and FS more broadly has increased greatly over recent decades, many healthcare providers haven’t had experience in managing the treatment of these conditions in children and young people. These resources are set to help bridge this gap.
Prompt treatment for Functional Neurological Disorder in children is highly effective
Evidence-Based Mind-Body Interventions for Children and Adolescents with Functional Neurological Disorder, published in the Harvard Review of Psychiatry, aims to show clinicians and institutions around the world what is needed to establish effective community treatment programs and interventions for FND.
FND in children and young people involves the lived experiences of children; stress, their social environment, or early experiences, affecting their body’s biological system and impacting later life health and wellbeing. Patients with FND experience neurologic symptoms such as limb weakness, tremors, gait difficulties, seizures, or cognitive problems that are not explained by traditional neurological disorders.
As many as a fifth of children and adolescents seen in paediatric neurology clinics are found to have FND, and an estimated 63 to 95 percent of these patients can fully recover if they receive prompt diagnosis and proper treatment.
The report highlights that the treatment gap for FND is in part due to long-standing stigma and ingrained belief that patients with FND do not suffer from a real disorder and therefore do not require, or even deserve, treatment.
Aiming to shift the narrative in the treatment of FND worldwide, the authors outline a plan to increase awareness and standardise the care for patients with FND using evidence-based interventions.
Through sharing the almost clinical experience of the Mind-Body team at The Children’s Hospital at Westmead (CHW), spanning almost 30 years, in treating children who present with FND, the authors hope to inform clinicians around the world and empower them to establish their own programs for children with FND.
In the report, the Mind-Body team highlight a seven-step FND-informed therapeutic process, which enables clinicians and multidisciplinary teams to personalise interventions for each child and family, both in inpatient settings, and in outpatient settings in collaboration with community-based clinicians.
“An FND-informed skillset can be easily added into the current clinical practice of most healthcare professionals working in paediatrics; they simply need to learn to recognise the rule-in signs for FND and practice communicating an FND diagnosis,” said Staff Specialist in Psychological Medicine at CHW and senior author Dr Kasia Kozlowska and colleagues.
A first-of-its-kind manual for the treatment of Functional Seizures
Recognising the need for an FND-informed culture of care, a team of clinicians from CHW’s Mind-Body team; Blanche Savage, Catherine Chudleigh, Clare Hawkes and Kasia Kozlowska, along with Stephen Scher, affiliated with Harvard Medical School and University of Sydney Medical School, have published a first-of-its kind practical manual for the treatment of FS.
Functional seizures, a common kind of FND, are sudden episodes which look similar to epileptic seizures but are not caused by abnormal electrical activity in the brain. FS occur when stressful life events and the challenges of daily living—often cumulative—cause brain and body systems to move into a state of overdrive and temporary dysregulation.
Symptoms differ from person to person but can include loss of voluntary control of motor function, as well as a change in or loss of consciousness.
The manual, Treatment of Functional Seizures in Children and Adolescents: A Mind-Body Manual for Health Professionals, has been published as an open access (free to download) book, aiming to help provide access to health professionals caring for children and young people experiencing FS around the world, to encourage the development of a more compassionate and effective culture of care.
Dr Kasia Kozlowska said while FS are commonly encountered by paediatricians, internists, neurologists, psychiatrists, psychologists, allied mental health providers and rehabilitation specialists, medical management can be complex and challenging. She said there has been a significant gap between research and practice in the field to date, which the authors hoped to bridge through the publication of the manual.
“There has been no detailed material available about the treatment of functional seizures in the published literature, and there is a pressing need to change the outdated culture of care, to replace the stigma and lack of understanding and empathy towards FND, with a compassionate FND-informed culture of care,” Dr Kozlowska said.
The manual is devised to empower clinicians to support the development of paediatric/mental health liaison services in this area.
“We wanted to communicate to psychologists, psychiatrists, and other mental health clinicians that they have the skills to treat functional seizures. They just need to expand them a bit,” Dr Kozlowska said.
“Our hope is that a growing number of clinicians will feel well equipped to care skilfully for young patients experiencing FS and FND, and our goal is for more young people experiencing these conditions to return to good health and normal functioning and wellbeing.”
Within the first week of publication, the manual was downloaded over 450 times, and it has received support from global counterparts who, drawing on the resource, have translated the book’s Fact Sheet and its Five-Step Plan into 21 languages, representing a truly international effort.
“We hope clinicians who see children with functional seizures around the world will be able to easily access this resource, and that it will give them a good ground in terms of the triage, assessment and treatment process”, Dr Kozlowska said.
Congratulations to the team on the delivery of this timely and valuable resource to assist health professionals not only locally, but also globally. With thanks to The Westmead Institute for Medical Research for its support in the development and funding of this important resource.