Name: Dr Adith Mohan
Position/s:
Senior Staff Specialist in Neuropsychiatry, Neuropsychiatric Institute, POW Hospital, Sydney
Senior Lecturer, School of Psychiatry, UNSW Sydney
Research Fellow, Centre for Healthy Brain Ageing (CHeBA), UNSW, Sydney
Project title:
The Mindgardens Functional Neurological Symptom Disorders (FND) Clinic– Evaluation of feasibility and effectiveness of a multidisciplinary tertiary FND clinic with a nested brief psycho-behavioural intervention
Can you please tell us about the project and why it is needed?
Functional neurological symptom disorders (FND) are a common and potentially reversible cause of neuropsychiatric disability. FND has an estimated incidence of 4-12 per 100,000 people per annum amounting to 200-300 new patients diagnosed with FND per year in NSW alone[1]. Patients with FND commonly present to neurology and neuropsychiatry clinics with a variety of motor, sensory and cognitive symptoms including paralysis, tremor and seizure-like episodes [1]. The disorder is most prevalent in young to middle-aged adults the majority of whom are women, with more than a third remaining out of the workforce, and a quarter requiring disability support. FND patients have high rates of health care resource utilisation in both mental health, and non-mental health services [2]. Data from the Scottish Neurological Symptom Study [3] show that patients with FND experience increased rates of anxiety, depression and suicidal ideation. Demand for assessment and management of patients with FND remains high, though specialist services with experienced practitioners and strong multidisciplinary links are rare.
Poor healthcare experiences for people with FND are commonplace, and have a negative impact on health care utilisation, symptom persistence and overall prognosis [4]. The evidence suggests however that high quality and timely neuropsychiatric assessment aimed at developing person-centered, recovery-oriented care plans with multidisciplinary input can improve the experience of care for people with FND leading to better outcomes and healthcare resource utilisation [1].
There is a lack of coordinated service provision for FND in NSW and Australia, hindering efforts to systematically collect clinical data that can be translated into gold-standard practice and shape policy development. A recent Australian study estimated up to 15% of neurology outpatients will receive a diagnosis of FND [5]. Clinical expertise in FND remains limited and primary and secondary care clinicians report feeling ill-equipped in caring for these patients [6]. Current service models cater poorly to FND where collaborative input in assessment and management planning is essential.
The proposed Mindgardens FND clinic is a tertiary assessment and intervention clinic for patients with FND providing multi-disciplinary assessment and a brief intervention program for suitable patients. This research-ready clinic will see participants referred from their GP or specialist with a diagnosis of FND. Such a clinic is not currently available in Australia in the public sector and bridges a significant gap in care-provision for a vulnerable group with high rates of physical and mental health (MH) morbidity, disability and healthcare utilisation. It will bring together clinical experts from neuropsychiatry, neurology, rehabilitation medicine, physiotherapy, occupational therapy (OT) and psychology for the first time in NSW.
Who are the project team?
Our team specialises in the assessment and management of neuropsychiatric disorders such as FND. The Neuropsychiatric Institute (NPI) where project lead Dr Mohan and investigator Prof Perminder Sachdev are based has been at the forefront of tertiary care and clinical research in neuropsychiatry for three decades. Having long fostered collaborative care partnerships across the disciplines of neurology, clinical neuroscience, rehabilitation medicine and neuropsychology the NPI is an ideal home for a tertiary clinic such as this. In a state-first initiative, we are bringing together a team of clinical and research experts from neuropsychiatry, neurology, rehabilitation medicine, physiotherapy, OT and psychology and in doing so we will create and evaluate a model for gold-standard, evidence-based care provision for FND in NSW and Australia. In addition to neuropsychiatrists Dr Mohan and Prof Sachdev the team currently includes clinical staff from the departments of neurology (Prof Somerville, Drs Hanka Laue-Gizzi, Christian Zentner), and rehabilitation medicine (Dr Peter Sturgess) as well as private sector neurology (Dr Katherine Spira). All these members of the team have been actively involved in the delivery of clinical care to patients with FND and will participate in the assessment protocols of the proposed clinic. Drs Somerville, Laue-Gizzi and Zentner of the Comprehensive Epilepsy Service, (POWH) jointly with Dr Mohan, have developed and implemented a coordinated program of care for patients with seizure subtype of FND over the last decade.
Dr Adam Bayes and A Prof Vijaya Manicavasagar have expertise in psychotherapeutic intervention for individuals with a history of developmental trauma, a significant proportion of whom present with FND. Prof Richard Kanaan is a world-renowned clinical researcher in FND who has developed and run FND clinics in the UK and Australia and will guide outcome measurement and key performance indicators for the clinic. Dr Katherine Gill is the founder and president of FND support services, Australia and provides OT services to several people with FND and through FND Australia Support, has contact with 1500 people with FND in the support group. As a person with lived experience of FND, she also brings a consumer-centric focus to the clinical program and future translation into secondary and private care settings.
Together, our project team represents a unique group of passionate collaborators with the clinical and academic expertise needed for successful implementation of this project and the sustainable translation of clinic outcomes into mainstream practice in the secondary and primary care settings.
What are you hoping to achieve in this project?
This project is an important first step towards addressing the high rates of morbidity among people with FND. By embedding strong multidisciplinary input at the core of the FND clinic, we will for the first time in NSW address the complex needs of people with FND in line with internationally recommended practice guidelines. In developing the model of care for our project, we committed to ensuring the clinic would remain sustainable and scalable by leveraging existing healthcare resource and expertise. There is a critical need for evidence of feasibility and effectiveness of such real-world care pathways in this population to ensure optimal functional, quality of life and overall health outcomes. These are key priorities for people with FND and their support networks.
What impact do you imagine the project will have?
Specialist FND clinics such as ours are best placed to provide care to the many sufferers of FND in a cost-effective way. This study clinic will provide early and accurate post-diagnostic care and contribute to up-skilling health-care staff and improve health literacy in relation to the management of FND in emergency, inpatient and outpatient settings, critical to sustainable practice change and policy development. We will closely examine the health care utilisation impact of our clinical model seeking to guide cost-effective funding initiatives for FND. Further we aim to develop a hub of expertise in the field which in time will lead us to focus on capacity building in FND care across regional and remote centres in NSW utilising a clinician-to-clinician telehealth consultation model currently utilised within the NPI routinely.
Is there any call to action or collaboration needs you would like to highlight?
We are particularly keen to highlight a strong partnership with FND Australia Support services (https://fndaus.org.au/) as a leading voice advocating for the views and needs of people with FND under the leadership of Dr Katherine Gill. With Dr Gill, we will look to develop cohesive practitioner networks in FND, along with creating collaborative educational resources and clinical care templates that could be provided to practitioners on demand.
- References
- Espay, A.J., et al., Current concepts in diagnosis and treatment of functional neurological disorders. 2018. 75(9): p. 1132-1141.
- Aybek, S., et al., What is the role of a specialist assessment clinic for FND? Lessons from three national referral centers. 2020. 32(1): p. 79-84.
- Scotland, H.I.J.E., National Health Service, Healthcare Improvement Scotland, Stepped care for functional neurological symptoms: a new approach to improving outcomes for a common neurological problem in Scotland. 2012
- Robson, C. and O.S.J.W.o.r. Lian, “Blaming, shaming, humiliation”: Stigmatising medical interactions among people with non-epileptic seizures. 2017. 2.
- Ahmad, O. and K.E.J.J.o.C.N. Ahmad, Functional neurological disorders in outpatient practice: an Australian cohort. 2016. 28: p. 93-96.
- Barnett, C., et al., The vicious cycle of functional neurological disorders: a synthesis of healthcare professionals’ views on working with patients with functional neurological disorder. 2020: p. 1-10