SYMPOSIUM PROGRAMME
REHABILITATION AND PROGRESSIVE NEUROLOGICAL CONDITIONS
– WHAT THE FUTURE HOLDS
Friday 13th November 2015, 09.00 – 18.00
Basement Lecture Theatre,
33 Queen Square, London WC1N 3BG
This one day symposium will explore developments in rehabilitation strategies for people
with progressive conditions and how current research and innovation might translate into
improved function and quality of life. Experts from a variety of professional backgrounds will
address issues relating to the role of rehabilitation in progressive conditions, including
neurogenetics, technologies, pharmaceutical interventions, cognitive and self-management
strategies.
Registration:
£95 for the whole day (lunch included); £50 for a half day (no lunch).
Please register online using this link:
http://onlinestore.ucl.ac.uk/browse/extra_info.asp?compid=1&modid=2&deptid=125&catid=200&prodid=1101
If your employer will be paying for your registration, we may be able to invoice them. Enquiries to
cnr@ucl.ac.uk
CPD Points applied for
8.30 – 9.00
Registration and coffee
9.00 – 9.05
Welcome
KEYNOTE LECTURE
9.05 - 9.45
Rehabilitation’s rightful place in progressive disease
– Chris Ward
SUMMARY: We think of rehabilitation as taking us from a bad situation at point A to a better one at point B, but in
progressive conditions we require a more recursive model than this. Rehabilitation can reduce the slope of decline by
preserving function, bypassing impairments and preventing complications, and we select goals to further these aims in
progressive conditions. But rehabilitation is not only a structured process but also a set of medical, therapeutic and
personal skills. Patients and families acquire many of these skills for themselves as they carry on their lives in the face of
constantly increasing difficulties. A limiting case here is terminal care. To use the word ‘rehabilitation’ might seem to
abuse the dignity of a dying person, but the skill of looking for the possibilities of life can be profoundly right even when
death is near. Such ‘possibilitation’ is equally appropriate at every stage in the decline of someone with, for example,
motor neuron disease. These relatively complex ideas are badly served by the word ‘rehabilitation’. I will end by making
some suggestions, based on past and current experience, concerning how to gain for rehabilitation (in its broadest sense) a
central place in today’s healthcare policy.
CHRIS WARD is currently Clinical Director for Neurological Conditions, East Midlands Strategic Clinical Network for Mental
Health, Dementia and Neurological Conditions. He is Emeritus Professor of Rehabilitation Medicine at the University of
Nottingham, being appointed to the chair in 1994 and retiring in 2012. He was president of the British Society of
Rehabilitation Medicine from 2006 to 2008. His clinical and academic career centred on applying the principles of
rehabilitation in non-acute contexts, with a focus on people with progressive neurological conditions and their families. He
also developed an interest in the rehabilitation of people with ‘functional’ symptoms and disabilities. He is a UKCP
accredited systemic psychotherapist and still practices as a family therapist. He is the editor of ‘Meanings of ME:
Interpersonal and Social Dimensions of Chronic Fatigue’ (Palgrave Macmillan, 2015).
INTERACTION AND MEANING
CHAIR: CATHERINE DOOGAN
9.45-10.15
Augmentative and Alternative Communication (AAC)-What’s out
there? The latest research and technology – Helen Paterson
SUMMARY: For many individuals with neurological conditions, Augmentative and Alternative Communication (AAC) is a
field of Assistive Technology which is vital in enabling communication with others, and maintaining independence as much
as possible. With the development of more accessible mainstream technologies, and the growth in social media, the AAC
field has hugely changed over the past few years. I will be exploring some of the recent developments in technology and
what is to come in the field of AAC. I will also be discussing the latest on NHS England funding for AAC and the positive
impact this has been having on individuals with neurological conditions.
HELEN PATERSON is a Speech and Language Therapist working on the Compass Assistive Technology Service at the Royal
Hospital for Neuro-disability in Putney. Compass is one of London’s specialist AAC assessment hubs. Helen started her
career as a registered adult nurse working on a medical neurology ward which is where a strong interest in helping
individuals with communication difficulties developed. She then went on to qualify as a Speech and Language Therapist,
initially working in the acute hospital setting and moving on to community and rehabilitation settings. She has an MSc in
Assistive Technology, and the research from the MSc, exploring the views of adults with acquired neurological disorders
towards AAC has recently been published in Disability and Rehabilitation in a Social Media and Communication Special
Issue.
10.15-10.45
Assistive Technology for Cognition: An Introduction
- Brian O’Neill
SUMMARY: Humans have a long history of augmenting cognitive functions using technological devices. Cognition is
grounded in the neural architecture of the human brain and the social and technical milieu within which that neural
structure is embedded. The provision of assistive technology for cognitive impairments has a short history but promising
future. A framework for organising assistive technology for cognition by mental function supported enables (a) compilation
of evidence of effectiveness; (b) prescription of devices following assessment; (c) development of new technologies. The
change in dependence experienced due to use of cognitive technologies may positively reposition persons with brain
impairment in terms of their social relationships. I will review evidence of efficacy of technologies to support different
domains; highlight areas where emerging technologies require clinical trialling and identify areas where development of
supports is required. Examining potentially useful lines for development for future ATC can allow consideration of some of
the challenges facing assistive technology for cognition.
BRIAN O’NEILL works with the Brain Injury Rehabilitation Trust as the Clinical Director of Graham Anderson House, a
neurobehavioural rehabilitation centre in Glasgow, Scotland. He studied Psychology at Trinity College, Dublin and his
post-graduate degrees in Clinical Psychology and Neuropsychology are from the University of Glasgow. His research
interests focus on how cognitive abilities mediate independent activity and how assistive technology for cognition can be
used to support people with cognitive impairments.
10.45-11.00
Q&A/Discussion
11.00-11.30
Coffee break
MOBILITY AND MOVEMENT
CHAIR: RACHEL FARRELL
11.30 – 12.00
Hereditary Spastic Paraplegia: diagnosis and management
- Henry Houlden
SUMMARY: Hereditary spastic paraplegia (HSP) is a genetic disorder characterised by progressive weakness
and spasticity of the lower limbs. The disorder is not uncommon, affecting around 5,000 people in the UK.
Diagnosis is often delayed and slow and few patients receive the exact genetic diagnosis, which is important for
prognosis and management. In this talk I discuss the clinical features, diagnosis, management and
rehabilitation needs of HSP. The HSP disability and management problems overlap with many other chronic
inherited conditions and I discuss a framework of how we manage these patients.
HENRY HOULDEN is Professor of Neurology and Neurogenetics at The National Hospital for Neurology and Neurosurgery
and UCL Institute of Neurology. As Clinical Lead for the Neurogenetics diagnostic laboratory, with Prof Nick Wood we
jointly run the largest neurogenetics clinic in the UK. We have focused on developing a comprehensive set of gene panels
that cover all groups of inherited neurological disorders such as HSP, ataxia, dementia, leukodystrophy and neuromuscular
conditions. In the clinic we diagnose and manage these disorders as a one-off to set out a management plan, or through
regular follow up.
12.00 – 12.30
Orthotics management
SUMMARY: Orthotics – speaker and abstract details tba
12.30 – 1.00
Keeping people with multiple sclerosis moving – Rachel Farrell
SUMMARY: Treatment options for the relapsing phase of MS have expanded dramatically in recent years. However,
agents to manage troublesome symptoms such as spasticity, fatigue and impaired mobility remain problematic. Spasticity
has a significant impact on mobility and quality of life in people with MS. Current goal standard treatment is moderately
effective but limited by side effects or lack of efficacy in some people. Treatments such as baclofen, tizanidine, nabiximols
and botulinum toxin all play an important role, but many people remain undertreated and require intrathecal treatments.
VSN16R is a novel agent developed by Canbex Therapeutics Ltd to treat MS spasticity and is currently in phase II trial. Early
trials suggested efficacy in animal models and few side effects in healthy volunteers, suggesting it may be an exciting
prospect in symptomatic MS treatment.
Fatigue and limb weakness also contribute significantly to reduced mobility and independence. Prolonged release
Fampridine is the first drug of its kind to be licensed to improve mobility in people with MS. Its license in the EU however is
conditional and further understanding of its impact on functional ability and quality of life is required.
This talk will address the development of novel therapeutic strategies for MS spasticity and the use of pharmacological
agents in the rehabilitation setting to improve mobility in people with MS.
RACHEL FARRELL is a Consultant Neurologist with a special interest in Multiple Sclerosis, spasticity and neurorehabilitation
at the National Hospital for Neurology and Neurosurgery, UCLH. She trained as an undergraduate at the Royal College of
Surgeons in Ireland, graduating in 1999. She later moved to the Institute of Neurology, University College London, Queen
Square, London in 2004 to undertake a PhD investigating causes and treatment of Multiple Sclerosis. Having completed
specialist training in 2009 she undertook a post CCT fellowship in Neurorehabilitation at the NHNN and thereafter became
a Consultant in the department. Dr Farrell has clinics focusing on spasticity management, management of walking
impairment in MS and inpatient neurorehabilitation. Her research interests focus on improving treatment of MS-related
spasticity, outcome measures and optimising existing treatments.
1.00 – 1.15
Q&A/Discussion
1.15-2.00
Lunch
PRIVATE MATTERS
CHAIR: JALESH PANICKER
2.00-2.30
Best practice and research for neurogenic bladder management: the
neurourologist’s point of view - Emmanuel Chartier-Kastler
SUMMARY: Neurogenic bladder management has improved tremendously within the last fifty years. Pathophysiology is
better understood. Risk factors for upper urinary tract have been looked for and patients have benefitted in all these areas.
However, the best management can only be carried out through the multidisciplinary approach which is starting to
develop, but is not worldwide. The urologist is a key leader in this multidisciplinary approach which brings together
urologists, rehabilitation physicians, neurologist, gynaecologists, colorectal specialists, and sometimes neuroorthopedic
surgeons.
Looking at where we stand and what could be the future, we have to obtain a better individualised symptom- oriented
diagnosis, correlated to the type of neurogenic disease and so defining individual treatment aims and follow-up design.
Spinal cord lesions were at the start of this story and remain the proof of concept of today’s management of incontinence
and/or chronic retention for our patients. However, brain diseases are today’s new challenge, and we have to take into
consideration that in some patients, because of cognitive challenges or unstable mental conditions, management has to be
flexible and adapted to neurological modifications. There is consensus worldwide (International Consultation on
Incontinence) for the management of spinal injuries, but neurological conditions may necessitate some adaptation
(oncological issues, inability to self- catheterize, etc.).
The objectives of the presentation will be: To review the standard of care of the bladder of spinal cord injured patients; To
describe unmet needs of the neurogenic bladder; To focus on some aspects of bladder management in degenerative
neurological diseases; To describe research perspectives; To discuss multidisciplinary organisation of neurogenic bladder
diagnosis and management.
EMMANUEL CHARTIER-KASTLER is Professor of Urology at the Pierre et Marie Curie Medical School,
Paris University. He received his MD from the Paris VI University in 1989 and was accredited as a
urologist in 1992. He is head of the functional urology programme. Professor Chartier-Kastler is an
active member of the board of the French Association of Urology, and has published extensively on
topics related to urology, especially incontinence and neuro-urology. His current projects include
the study of botulinum toxin for overactive bladder and BPH, evaluation of new drugs, and the study
of neuromodulation mechanisms of action. He co-chaired the 2015 International UroGynecological
Association Congress in Nice.
2.30-3.00
Bowel management in neurological diseases – Anton Emmanuel
SUMMARY: Constipation and faecal incontinence are highly prevalent symptoms in patients with spinal cord injury (SCI),
multiple sclerosis (MS), Parkinson's disease (PD), spina bifida (SB) and stroke. Faecal incontinence in SCI, MS and SB is
mainly due to reduced rectal compliance, attenuated rectoanal reflexes, loss of anorectal sensation and loss of voluntary
control of the external anal sphincter. Constipation in these conditions is also multifactorial, with altered colonic transit,
increased colonic compliance and tone and rectoanal reflexes, reduced mobility and side effects from medication. In PD,
dystonia of the pelvic floor and external anal sphincter often causes constipation due to difficult rectal evacuation.
Tailored dietary adjustment, oral laxatives, suppositories and conservative treatment modalities improve the condition in
the majority of patients: the key point is to introduce a formal regime whilst having the flexibility to tailor that
regime. When symptoms are refractory trans-anal irrigation is an effective alternative to poorly studied therapies like
neuromodulation and often unpopular options like stoma surgery.
ANTON EMMANUEL obtained his medical degree from London University. He is a Senior Lecturer in NeuroGastroenterology at University College London and Consultant Gastroenterologist at University College Hospital at the
National Hospital for Neurology and Neurosurgery (Queen Square) and the Royal National Orthopaedic Hospital
(Stanmore). Prior to this he was Senior Lecturer at Imperial College and St Mark's Hospital. His current clinical work
encompasses being director of the GI Physiology Unit at University College Hospital as well as providing a general
gastroenterology service. His research includes basic gut neurophysiology and the study of the aetiology and management
of functional gastrointestinal disorders of the upper and lower gut. He currently supervises 6 post-graduate research
fellows undertaking higher degrees. Laboratory work is undertaken jointly with colleagues in UCL. He is ex-Chairman of the
NeuroGastroenterology (NGM) section of the British Society of Gastroenterology (BSG) and chairs the Clinical Studies
Group of the NGM section of the BSG. He is the Medical Director of Core, the largest UK gastrointestinal charity, and is
editor-in-chief of Frontline Gastroenterology, a specialist clinical journal.
3.00-3.30
Monitoring pregnancy in women with Charcot Marie Tooth disease
- Matilde Laurá
SUMMARY: Charcot Marie Tooth (CMT) disease is a chronic slowly progressive inherited neuropathy clinically characterised
by distal weakness and sensory loss. Patients frequently ask whether pregnancy will affect their CMT, whether CMT will
affect their pregnancy, what type of delivery they should have and whether they or their child will have a higher risk for
any of the complications of pregnancy or delivery. Some patients report more unsteadiness or more gait instability due to
the increased weight. Currently guidelines for the management of pregnancy, delivery and postnatal care in CMT patients
are not available. In this presentation I will describe how CMT women are currently monitored during pregnancy with a
multidisciplinary approach which includes the involvement of a clinical nurse specialist, occupational therapist,
physiotherapist and orthotists.
MATILDE LAURÁ is a consultant neurologist working in the peripheral nerve team at the MRC Centre for Neuromuscular
diseases. Her research interests include inherited neuropathies, development of outcome measures and clinical trials. She
works closely with the neuromuscular physiotherapists and she runs a complex multidisciplinary clinic to address the
management of the long-term issues of patients with genetic neuropathies. The clinic is focussed on providing
management for orthopaedic complications, pregnancy, orthotic needs.
3.30 – 3.45
Q&A/Discussion
3.45 - 4.00
Coffee break
4.00- 4.30
Outcome measures for rehabilitation in progressive neurological
disorders - Jeremy Hobart
SUMMARY: Outcome measures for rehabilitation in progressive neurological disorders – where we are now and what the
future holds.
JEREMY HOBART is a Consultant Neurologist at Derriford Hospital, and Professor of Clinical Neurology and Health
Measurement at the Plymouth University Peninsula Schools of Medicine and Dentistry. His clinical sub-specialist interest is
the diagnosis and management of people with multiple sclerosis. His medical training was at St Mary’s Hospital Medical
School in London, and neurology training was undertaken predominantly at the National Hospital for Neurology and
Neurosurgery, Queen Square. Jeremy Hobart’s research interest is rating scales for measuring health outcomes. His
training in health measurement and rating scale science has included a PhD in Psychometrics from the London School of
Hygiene and Tropical Medicine (Prof Donna Lamping), and post doctoral attachments to the University of Chicago (Prof Ben
Wright) and, more recently, a secondment to Murdoch University Perth, Western Australia (Prof David Andrich) sponsored
by a Royal Society of Medicine Ellison-Cliffe Travelling Fellowship.
LIVING WITH A LONG-TERM CONDITION
CHAIR: SARAH DANIELS
4.30 – 4.55
Patient and Public Engagement - Alison Thomson
SUMMARY: Digesting Science is an educational course and website (www.digestingscience.co.uk) that teaches people
about the science behind multiple sclerosis (MS) in an innovative way. Scientific information is communicated through
practical activities developed by the MS researchers at Queen Mary, University of London (QMUL). Digesting Science fills a
gap in our clinical service by talking about highly complex scientific content in a simple, fun and engaging way. The method
of communicating (the practical activities) was developed between designers and scientists at QMUL ensuring that every
activity is factually correct. The project is innovative as it can continually be updated to communicate new research
conducted by the research group at QMUL through adding activities to reflect new research published by the group.
Digesting Science also exists as a website resource with videos of QMUL scientists talking about their research and taking
the viewer through the activities.
This talk describes the value of this tool in patient and public engagement. We ran the project at QMUL and Great Ormond
Street as Saturday morning courses for the past three years for families to attend, at MS Life (April, 2014) where around 40
families with a parent with MS took part in the course activities, and we presented the course at the MS Trust conference
(Nov, 2013) to inform over 200 MS Specialist Nurses about the resources with the aim to deliver the project across the
country.
ALISON THOMSON has been collaborating with Professor Gavin Giovannoni and the Barts MS Research Team at Queen
Mary, University of London for the past five years where she is a Visiting Researcher. She designs interactions between
people with multiple sclerosis and researchers studying the condition. Her PhD research investigates how patient
experience of people with MS might be improved by way of design research and design-led interventions. Alison is also a
Section Editor of the Elsevier Journal ‘Multiple Sclerosis and Related Disorders’ and directs the Social Media Sessions at the
annual European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS) conference.
Previous design work has been exhibited at Moorfields Eye Hospital, Cheltenham Science Festival and the Dublin Science
Gallery. Alison completed her Masters at The Royal College of Art in Design Interactions (June 2010), where she designed
alternative health care experiences for people with Multiple Sclerosis based on the principles of holistic care.
4.55 – 5.20
The many FACETS of multiple sclerosis fatigue – the role of selfmanagement – Sarah Thomas
SUMMARY: Fatigue is one of the most commonly reported and debilitating symptoms of multiple sclerosis (MS), limiting or
preventing participation in everyday activities, and reducing psychological well-being. In this presentation I will describe a
recently developed group-based self-management programme for fatigue management for people with MS (called
‘FACETS’) that blends cognitive behavioural and energy effectiveness approaches (Fatigue: Applying Cognitive behavioural
and Energy effectiveness Techniques to lifeStyle) and is delivered by allied health professionals and nurses. I will report
findings from a national multi-centre pragmatic trial (ISRCTN76517470) that evaluated the clinical and cost-effectiveness of
FACETS and explored participants’ experiences of applying the programme in their everyday lives. I will then describe how
the UK MS Society is supporting the national roll-out of FACETS and lessons learned from this process.
SARAH THOMAS is a Senior Research Fellow and currently Deputy Director of the Bournemouth University Clinical
Research Unit and a National Institute for Health Research (NIHR) Research Design Service (RDS) Consultant. Her
background is in psychology and she has over 10 years’ experience in health services research. She is particularly
interested in the application of psychological approaches to the management of long-term conditions and the
development and pragmatic evaluation of complex interventions.
5.20 – 5.45
Exercise for people with progressive neuromuscular diseases
– Gita Ramdharry
SUMMARY: This presentation will discuss the problem of sedentary lifestyles for people with NMDs, highlighting the
challenges and barriers to physical activity. There will then be a presentation of the best available evidence for exercise
and activity interventions, taking into account safety and feasibility of approaches.
GITA RAMDHARRY is a physiotherapist with an interest in people with neuromuscular diseases. She acquired a PhD in
Neurological Studies from UCL in 2008, exploring gait impairment and orthotic management of people with Charcot-MarieTooth disease. Since then she has worked at the School of Rehabilitation Sciences at Kingston and St George’s Universities
joint faculty, where she is an Associate Professor. She continues to work collaboratively at UCL’s MRC Centre for
Neuromuscular Diseases where she leads research studies into exercise, orthotics and falls/balance interventions. She also
continues to work clinically one day a week at the Centre, contributing to the complex management service for people with
polyneuropathy.
5.45 – 6.00
Highlights of the day
6.00
Meeting closes with drinks and networking
cnr@ucl.ac.uk
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