Comprehensive Care Subcommittee

 

Comprehensive Care Subcommittee  

Co-chairs:

Emily Henderson, PhD, MRCP

Alice Nieuwboer, PhD, PT

 

Elaine Book, MSW, RSW

Nienke de Vries, PhD

Kat Hill, RN 

Hanneke Kalf, SLP
 
Suketu Khandar, MD

Jennifer Ley, RN

Victor McConvey, RN

Anat Mirelman, PT

Serene Paul, PhD

Elisa Pelosin, PhD

Daniel Peterson, PhD

Sue Thomas, RN

Lisa Warren, MHS

Julia Wood, MOT

Alison Yarnell, MD


Emily Handerson

Emily Henderson, PhD, MRCP is an Academic Consultant Geriatrician with an interest in Parkinson’s disease and related disorders at the Royal United Hospitals, Bath and a Consultant Senior Lecturer at the University of Bristol. She was awarded a fellowship from Parkinson's-UK and The Association of British Neurologists to undertake a PhD in preventing falls in Parkinson’s. She published the results of this phase II drug trial as first author in Lancet Neurology. She was appointed as a consultant in 2016 and based at the RUH, is PI for commercial and investigator led studies in Parkinson’s. Academically, her research interests lie in gait disorders and cognitive function, movement disorders and clinical trials in older people. She has a translational portfolio of research from basic science models of motor behaviour through to phase II and III clinical trials as well as service innovation. She is the Chief Investigator of the CHIEF-PD trial. This £2.1 million, NIHR funded, phase III RCT, is a multicentre trial of cholinesterase inhibitors to prevent falls in Parkinson’s with 26 sites across the UK. In 2019 she was awarded, as co-Principal Investigator, a £10 million grant from the Gatsby foundation to innovate Parkinson’s care. PRIME-PD is a collaboration with Radboud University in the Netherlands, the University of Bristol and Royal United Hospitals Bath, that shares expertise and facilities to deliver this world-leading research. She is lead for the Complex Medicine in Older People teaching in the new Bristol MB21 Medical School Curriculum. She has been an invited speaker at both national and international meetings. From inception until 2018, she was the Lead for the South West Parkinson’s Excellence Network. She is Lead for Ageing in the West of England Clinical Research Network (CRN). Nationally, she is Chair of the British Geriatric Society - Movement Disorder Section (BGS-MDS), sits on the National Parkinson’s Disease Portfolio Development Group (PD-PDG) and is a Faculty member of the Parkinson's Academy.

Elaine BookAlice Nieuwboer, PhD PT works as a full professor in the Department of Rehabilitation Sciences at the University of Leuven. She is head of the Neuromotor Rehabilitation Research Group. She and her team are investigating the mechanisms of gait and balance disturbances in Parkinson's disease (PD) as well as upper limb motor problems. Coming from a motor control perspective, the group established the extraordinary link between freezing of gait and freezing in different effectors. This partially common mechanism is currently refined by ongoing longitudinal work from the group. Alice’s team also investigates the effectiveness of motor learning, virtual reality while walking on a treadmill, offering and withdrawing motor feedback and dual task training. Underlying all these studies is the question whether learning can still occur in neurodegenerative disease and how it will imprint in the brain at the neurological systems level.

Elaine BookElaine Book, MSW, RSW  has worked in the field of Social Work for over 30 years in a variety of community and hospital settings with an interest in the geriatric population. She has worked with individuals, families and as a leader of support groups. She is the Center Coordinator and Clinic Social Worker for the Pacific Parkinson’s Research Centre, a PF Center of Excellence, at the University of British Columbia in Vancouver, Canada. She has become a leader in the PD community, serving as a speaker at support groups, a presenter at neurology meetings, a faculty member and Co-ordinator of the Allied Team Training Program, mentor with the Parkinson Foundation, planning committee member of the World Parkinson Congress (2016,2019) and a member of the Parkinson Canada Medical Advisory Council. She has also been active in research projects focusing on coping with Parkinson’s Disease, caregivers of people with Parkinson’s Disease and the role of social work in providing care to people with Parkinson’s Disease. Ms. Book also coordinates a blog designed for neurological social workers and has a special interest in raising awareness and developing resources for PWP and their children/teens. Ms. Book earned her B.S.W. from the University of Manitoba and her M.S.W. from the University of British Columbia, with her thesis focusing on caregiver stress. She has continued to expand her training throughout her career, including cognitive behavioral therapy, advance care planning and social work instruction.
Nienke de VriesNienke de Vries, PhD  is a researcher at the department of Neurology, Radboud University Nijmegen Medical Centre, the Netherlands. She received her PhD in the field of physical activity, mobility and physiotherapy in geriatrics, including frail elderly with multiple conditions like Parkinson’s Disease and cognitive decline. After her PhD, she specialized in Parkinson’s disease at the Expertise Center for Parkinson’s and Movement disorders (Nijmegen, The Netherlands), where her research focuses on; 1) non-pharmacological interventions and; 2) using technology as part of personalized, efficient and, accessible healthcare. Her present research mainly focuses on bringing medical treatment close to patients’ homes, and on using technology as a tool to accomplish this.

Kat HillKat Hill, RN is a retired Nurse Midwife who delivered over 800 babies in her career. She retired after being diagnosed with Young Onset Parkinson’s disease in 2015. Now she writes, speaks and advocates for living with resilience. Kat and her husband Ken have raised three bright and spirited children in Portland, Oregon. When not traveling, she can be found writing, painting or sewing with Baxter, her Yorkshire Terrier, by her side.



Hanneke Kalf, SLP

Suketu Khandhar

Suketu Khandar, MD is a Movement Disorder Specialist and the Medical Director of the Comprehensive Movement Disorders Program for Northern California, Kaiser Permanente. He completed a fellowship in Parkinson’s disease & Movement Disorders at the University of California, San Francisco (UCSF). Dr. Khandhar works with a team of specialists focusing on Parkinson’s disease, Essential Tremor and Dystonia. He has championed multi-disciplinary care using an integrated practice model and has published on the topic.

Jennifer Ley, RN

Victor McConveyrVictor McConvey, RN  has been a Nurse for 30 years and has worked in the area of Neurology for the past 20 years. Victor has worked in clinical management and service development positions in both Australia and the United Kingdom, including establishing the Parkinson’s Nurse Specialist position in Leeds (UK).   
Victor is currently employed as the Clinical Nurse Consultant and Manager of the State-wide Health information and education service at Parkinson’s Victoria. In this role he works across the state educating health care professionals about Parkinsons and working with consumers on managing symptoms and improving self management.  
Victor is currently the chair of the International Movement Disorder Societies Task force on Palliative care leads the Health Care Professional section of the society. Victor is also a member of Clinical Advisory team of PD PAL a trans- European study developing new standards of Palliative care in Parkinson’s.

Anat Mirelman, PT

Serene PaulSerene Paul, PhD  is a teaching and research academic at the University of Sydney. She lectures undergraduate and postgraduate students in neurological physiotherapy. Her research interest is in improving physical function and increasing access to sustainable interventions for people with Parkinson's disease.
Elisa Pelosin, Ph
Daniel PetersonDaniel Peterson, PhD  is an Assistant professor at Arizona State University and director of the Gait and Balance Dysfunction Laboratory. His lab focuses on identifying ways to predict and prevent falls in neurological populations, as well as understanding motor learning as it pertains to physical rehabilitation. To achieve these goals, his lab applies biomechanical (i.e. motion capture), neuropsychological (cognitive assessments), and imaging (fMRI) techniques.
Sue Thomas

Sue Thomas, RN with a clinical background in nursing, Sue has held leading national roles since 1991 including 18 years as national policy and practice adviser for long term conditions at the Royal College of Nursing. 
Her involvement in Parkinson’s started 1989 when the first Parkinson’s nurse specialist (PDNS) post was established in Cornwall. Subsequently she was a member of the steering group overseeing the Jarman research of the 5 flagship PDNS posts following which she supported Parkinson’s UK to develop over 200 PDNS posts in the NHS.  Sue is also a founder Faculty member of the Parkinson’s Academy training programme now in its 17th year. 
In 2008, Sue supported Parkinson’s UK to develop a unique commissioning support service to improve  Parkinson’s services nationally as well as  involvement in several national strategic reviews  of these services including Government All Party Parliamentary Groups, the Public Accounts Committee and the Audit Commission. 
Sue continues to work on a range of service transformation projects in both primary and secondary in Parkinson’s care. She is part of the advisory group currently working with Dr Emily Henderson and Prof Bas Bloem on the Parkinson’s Prime Research between the Netherlands and Bath UK and supporting development of a Parkinson’s nurse telephone support service in Milan Italy.  
A Florence Nightingale Scholar and Winston Churchill fellow over the last few years she has written a range of national disease insight reports to raise awareness of some of the issues surrounding variation in care services most recently working on an NHS England RightCare optimal care pathway for end of life care in Parkinson’s.

Lisa Warren, MHS

Julia_WoodJulia Wood, MOT  received her master’s degree in Occupational Therapy from the University of Minnesota and her Bachelor of Science in Exercise Science & Wellness from Ball State University. She completed a clinical internship in neurological rehabilitation at the Mayo Clinic Hospital. She serves as the occupational therapist at the Dan Aaron Parkinson’s Rehabilitation Center and in multidisciplinary clinics for neurological movement disorders at University of Pennsylvania’s Parkinson’s Disease & Movement Disorders Center for Excellence. She serves as faculty for the Parkinson Foundation’s Allied Team Training for PD program, as certification and training faculty for LSVT BIG, as a facilitator for the PD SELF program and as an ambassador for the Davis Phinney Foundation.
Alison Yarnall

Alison Yarnell, MD completed her PhD in 2013 at Newcastle University looking at biomarkers of cognitive impairment in Parkinson’s disease. She is now a Clinical Research Fellow at the Institute of Neuroscience, Newcastle University; Deputy Director of the Clinical Ageing Research Unit; and Honorary Consultant in Older People’s Medicine at Newcastle upon Tyne Hospitals (NuTH) NHS Foundation Trust. She has a particular interest in cognitive decline and falls in people with Parkinson’s and other neurodegenerative diseases and has published more than 60 articles in this topic area. She runs a specialist clinic for older adults with Parkinson’s and complex health needs in NuTH, in addition to a general medical memory clinic.

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