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  • 1. Acknowledgements The MS Trust would like to thank the following companies for supporting the annual conference: • for funding MS specialist nurse attendance under the Risk-sharing Scheme Bayer Schering Biogen Idec Merck Serono Teva Pharmaceuticals • for educational grants towards logistical support Biogen Idec Genzyme Novartis Contributors The MS Trust would also like to acknowledge the contribution of: Medivents AlphaSound Audio Visual The staff at Chesford Grange and Stratford Manor hotels MS Trust Education Steering Committee This education event will be organised by Multiple Sclerosis Trust (Education) Ltd. Registered Office: The Spirella Building, Letchworth Garden City, Herts SG6 4ET. Registered Company No. 5105344, registered in England and Wales VAT No. 836 4756 95. MS Trust (Education) Ltd exists to carry out the educational objectives of the Multiple Sclerosis Trust, Registered Charity No. 1088353.
  • 2. mstrust 2013 annual conference for health and social care professionals MS Trust Annual Conference 3 - 5 November 2013 Chesford Grange, Kenilworth mstrust.org.uk/conference
  • 3. Annual Conference 2013 Welcome to the 2013 MS Trust Conference A lot of excellent work has been going on in the world of MS this year – more research, more treatments available, more focus on progressive disease. And frustratingly if you’re a person living with MS, more confusion as to what treatments and services are available to you. This year’s programme aims to provide more clarity around all of these topics. Welcome 2 We are delighted to welcome back Professor Alan Thompson as our opening plenary speaker. Professor Thompson has made an extraordinary contribution to the research and treatment of MS and we are really pleased he could join us to update us all on the latest work in progressive MS. We also extend a warm welcome to our other plenary speakers, Karen Middleton from NHS England talking about the challenges and opportunities for MS care, Dr David Rog on the latest MS drugs and Dr Jeremy Chataway on clinical trials in secondary progressive MS. And a special welcome to Alexandra Cowen, who gives a personal perspective on living with MS in our closing keynote lecture. As always there are many topical seminars to choose from and I would like to thank all our speakers for generously giving their time and sharing their expertise. This year we are pleased to introduce two Open Forum sessions, one on succession planning and one on second line treatments. These are informal opportunities to discuss issues and share ideas for good practice and I would encourage you to get involved in the debate. Last and certainly not least, I am sure you will all join me in congratulating the Therapists in MS (TiMS) Group on their 10th anniversary. Very best wishes and I hope you all enjoy the conference. Pam Macfarlane Chief Executive, MS Trust Trustees of the MS Trust Patrons Prof Mike Barnes Mr Paul Budd Dr Alexander Burnfield Ms Helen Caulfield Mr Russell Hardy (Chair) Ms Jill Holt The Hon Sarah Joiner (Vice Chair) Mrs Christine Jones Mr Nick Kavanagh Prof Dawn Langdon Mr Mike Laver Ms Thea Longley Prof Neil Scolding Jackie and Laurence Llewelyn-Bowen Lady Rifkind
  • 4. Contents Conference programme Speakers’ abstracts Exhibitors and supporters Session index Subject index Map 4 8 16 17 18 19 Exhibition We have created an exciting new exhibition layout this year opening up new areas in the venue. The exhibition opens at 11:00 on Sunday 3 November and will remain for the duration of the Conference. The generous support given by the exhibitors is critical to the financial viability of the MS Trust Conference and we encourage you to take the opportunity to visit the exhibition stands during the breaks. To enter the prize draw, get the card in your delegate bag stamped at all of the exhibition stands. Tea, coffee and lunch will be served in exhibition zones 1, 2 and 3 throughout the Conference. For a full list of all exhibitors please refer to page 16. Research & development showcase Exhibition zone 3 Posters covering a wide range of issues relating to MS will be on display. Posters can be viewed throughout Sunday 3 and Monday 4 November. Meet the authors The authors will be available by their poster on Monday 4 November from 16:30 - 17:30 for questions and discussion. MS info zone Monday 15:45 - 17:30, Stratford ms Independent and voluntary sector organisations showcase resources and services available to both health professionals and people with MS. MS technology zone Monday 15:45 - 17:30, Terrace bar ms Assistive technology companies showcase equipment supporting mobility, communication and environmental needs. MS creative zone Monday during the breaks and 15:45 - 17:30, Oberon Digesting Science is an educational programme where children from the age of 6-12 years old can learn about scientific research undertaken by the Neuroimmunology Group at Queen Mary, University of London. The programme consists of an educational course for children with parent(s) with multiple sclerosis where they can learn about the science behind the condition from the researchers and a website where children can interact with the research themes. The programme aims to empower and equip young people with the knowledge to deal with the issues of having a parent with MS. Contents Exhibition zones 1, 2 and 3 3
  • 5. Conference programme Sunday 3 November 2013 From 11:00 Conference programme 4 Conference registration Exhibition zone 3 Conference exhibition opens Exhibition zones 1, 2 and 3 12:00 - 13:30 Lunch Exhibition zones 1 and 2 13:30 - 15:45 Plenary session 1 Main conference room 13:30 Welcome and objectives for the Conference 13:45 Targeting progression - the International Progressive MS Collaborative Professor Alan Thompson, Dean, UCL Faculty of Brain Sciences, University College, London 14:30 Update on latest disease modifying drug therapies for relapsing remitting MS Dr David Rog, Consultant Neurologist, Salford Royal Foundation Trust 15:30 MS Trust update Pam Macfarlane, Chief Executive, MS Trust 15:45 - 16:30 Refreshments and exhibition Exhibition zones 1, 2 and 3 16:30 UKMSSNA AGM Stratford 16:30 Therapists in MS (TiMS) 10th anniversary celebration Avon 16:30 Sessions for those not attending TiMS/UKMSSNA meetings Seminar – Tobacco smoking and MS Stoneleigh & Warwick Professor Cris Constantinescu, Professor of Neurology, University of Nottingham Ali Manouchehrinia, Academic Division of Clinical Neurology, University of Nottingham Pilates exercise session Directors Katherine McGoldrick, Physiotherapist and Pilates Instructor 19:00 - 20:00 Open forum session on succession planning Stoneleigh & Warwick Debbie Quinn, Nurse Advisor, MS Trust and MS Specialist Nurse, Northamptonshire Healthcare NHS Foundation Trust 20:00 Welcome dinner and quiz Main conference room
  • 6. Monday 4 November 2013 Pilates exercise session at Stratford Manor (see signage for location) Katherine McGoldrick, Physiotherapist and Pilates Instructor 8:00 - 9:00 Breakfast seminar The new treatment paradigms for MS: treat-2-target Main conference room Professor Gavin Giovannoni, Professor of Neurology, Barts and The London School of Medicine and Dentistry 9:15 - 10:45 Concurrent seminar sessions Please attend your pre-selected seminar (a list will be displayed at the registration desk) Seminar 1 Reading an MRI Stratford Dr Declan Chard, Senior Clinical Research Associate, UCL Institute of Neurology Seminar 2 Tobacco smoking and MS Avon Professor Cris Constantinescu, Professor of Neurology, University of Nottingham Ali Manouchehrinia, Academic Division of Clinical Neurology, University of Nottingham Seminar 3 Acceptance and commitment therapy for people with MS Conference programme 6:50 - 8:00 Othello Dr Sarah Gillanders, MS Specialist Clinical Neuropsychologist, NHS Lothian David Gillanders, Academic Director, Doctoral Programme in Clinical Psychology, Dr University of Edinburgh Seminar 4 Research in practice: how to survive and thrive Stoneleigh Warwick D r Jenny Freeman, Reader in Physiotherapy and Rehabilitation, University of Plymouth, Nicki Ward-Abel, Lecturer Practitioner in MS, Birmingham City University Seminar 5 Occupational science and its application to occupational therapy practice Directors E mma Royal, Specialist Occupational Therapist, Buckinghamshire Healthcare NHS Trust Professor Annie Turner, Professor Emerita of Occupational Therapy, University of Northampton 10:45 - 11:15 Refreshments and Exhibition Exhibition zones 1, 2 and 3 Creative zone ‘Digesting Science’ Oberon 11:15 - 12:45 Concurrent seminar sessions Please attend your pre-selected seminar (a list will be displayed at the registration desk) Seminar 1 Transition to secondary progressive MS Stratford Jeremy Chataway, Consultant Neurologist, Honorary Senior Lecturer, National Hospital Dr for Neurology and Neurosurgery, London Susan Hourihan, Clinical Specialist Occupational Therapist, National Hospital for Neurology and Neurosurgery, London Seminar 2 Therapy tips for nurses Avon Pam Bostock, Consultant Occupational Therapist in Neurology, Staffordshire and Stoke on Trent Partnership NHS Trust Heidi Cleary, Neuro-specialist Physiotherapist, Haringey Neuro Conditions Team 5
  • 7. Psychology of medication adherence Othello Conference programme Seminar 3 P rofessor Rob Horne, Professor of Behavioural Medicine, UCL School of Pharmacy, London Seminar 4 Low-energy fatigue in MS: how can exercise help? Stoneleigh Warwick Professor John Saxton, Professor of Clinical Exercise Physiology, University of East Anglia S eminar 5 Directors The practical clinical use of functional electrical stimulation (FES) in the treatment of people with MS Christine Singleton, Clinical Specialist (FES) West Midlands Spasticity Network Project Manager, West Midlands Rehabilitation Centre Professor Ian Swain, Director of Clinical Science Engineering, Salisbury NHS Foundation Trust and Clinical Director, Odstock Medical Limited 12:45 - 14:00 6 Lunch and Exhibition Exhibition zones 1, 2 and 3 Creative zone ‘Digesting Science’ Oberon 14:00 - 15:45 Plenary session 2 Main conference room 14:00 - 14:45 Clinical trials in secondary progressive MS Jeremy Chataway, Consultant Neurologist, Honorary Senior Lecturer, National Dr Hospital for Neurology and Neurosurgery, London 14:45 - 15:45 NHS reforms – challenges and opportunities for MS care Karen Middleton CBE, Chief Allied Health Professions Officer, NHS England 15:45 - 16:30 Refreshments and Exhibition Exhibition zones 1, 2 and 3 15:45 - 17.30 Information zone Stratford Technology zone Terrace Bar Creative zone ‘Digesting Science’ Oberon Poster viewing Exhibition zone 3 Take time to view the excellent range of posters; authors will be at their poster between 16:30 and 17:30 for questions and discussion. 15:45 - 16:30 GEMSS II QA Session Avon Geraldine Mynors, GEMSS Programme facilitator you are thinking about applying for GEMSS II this is your opportunity to discuss If the project and application process 16:30 - 17:30 Open forum session on second line treatments Stoneleigh Warwick Pauline Shaw, MS Nurse Specialist, Kings College Hospital, London
  • 8. Pilates exercise session Directors Katherine McGoldrick, Physiotherapist and Pilates Instructor 19:30 - 20:00 Pre-dinner drinks Exhibition zone 3 20:00 Conference gala dinner Main conference room Tuesday 5 November 2013 6:50 - 8:00 Pilates exercise session at Stratford Manor (see signage for location) Katherine McGoldrick, Physiotherapist and Pilates Instructor 9:30 - 11:00 Concurrent seminar sessions Please attend your pre-selected seminar (a list will be displayed at the registration desk) Seminar 1 Practical management of ataxia and balance impairment Stratford Dr Lisa Bunn, Lecturer in Neurological Physiotherapy and Motor Control, Plymouth University Dr Wendy Hendrie, Specialist Physiotherapist in MS, Norwich Seminar 2 Future MS therapies Avon Dr Jason Ramtahal, Consultant Neurologist and Clinical Senior Lecturer South Devon Healthcare NHS Foundation Trust and University of Exeter Medical School Seminar 3 Cognition and MS Othello Dr Anita Rose, Consultant Neuropsychologist, East Sussex Seminar 4 The HOPE programme for people affected by multiple sclerosis: a positive approach to self-management Stoneleigh Warwick Andy Turner, Senior Research Fellow, Applied Research Centre of Health and Dr Lifestyle Interventions, Coventry University Vicky Harker, Facilitator, HOPE Programme, Coventry University Seminar 5 Alemtuzumab science and setting up an off licence service Directors Dr Joanne Jones, Clinical Lecturer Neurology, University of Cambridge Gail Clayton and Jacki Smee, MS Clinical Nurse Specialists, University Hospital of Wales, Cardiff 11:00 - 11:30 Refreshments and Exhibition Exhibition zones 1, 2 and 3 11:30 - 13:15 Plenary session 3 Main conference room 11:30 Poster presentation and prize giving 11:45 Keynote lecture: Sex, intimacy, relationships and living with MS Alexandra Cowan, Expert Patient, Sex and Disability Adviser 13:15 Summary of meeting and close Conference programme 16:30 - 17:45 7
  • 9. Speakers’ abstracts Sunday 3 November Plenary session 1 (13:30 - 15:45) Speakers’ abstracts 8 Targeting progression - the international progressive MS collaborative Thompson A Dean, UCL Faculty of Brain Sciences, University College, London Despite significant progress in the development of therapies for relapsing remitting multiple sclerosis, treatment of progressive MS remains comparatively disappointing. Yet this form of MS is the key determinant of disability. There are a number of major challenges in developing therapies for progressive MS and if these are to be overcome it will be essential to target specific priority areas for research. It is this realisation that stimulated the establishment of an international collaborative by volunteer and staff leaders from several MS societies with the explicit mission to expedite the development of effective disease modifying and symptom management therapies for progressive forms of multiple sclerosis. Through a series of scientific and strategic planning meetings, the collaborative identified and developed new perspectives on five key priority areas for research: 1) experimental models 2) identification and validation of targets and repurposing opportunities 3) proof-of-concept clinical trial strategies 4) clinical outcome measures 5) symptom management and rehabilitation Five working groups developed these areas further and there outcomes were presented at a major scientific meeting in Milan in 2013. Flowing from this an international call for challenge and infrastructure awards has been made and it is anticipated that this will be the forerunner of a major collaborative call which will be dependent on major international fundraising. This integrated, multi-disciplinary approach will enable effective translation of research into therapies for progressive MS. Update on latest disease modifying drug therapies for relapsing remitting MS Rog D Consultant Neurologist, Salford Royal Foundation Trust The number of licensed disease modifying drug therapies (DMTs) for the treatment of MS is set to expand in 2014 beyond the currently available beta interferons, glatiramer acetate, natalizumab and fingolimod. Although this increased choice is to be welcomed, it presents patients and their health care professionals with a number of issues to consider. I will summarise the evidence for efficacy and adverse events of current and imminent DMTs and also some of the issues regarding their rational sequencing. Seminar session (16:30 - 18:00) Tobacco smoking and MS Constantinescu C Professor of Neurology, University of Nottingham Manouchehrinia A Academic Division of Clinical Neurology, University of Nottingham In multiple sclerosis, it has been hypothesised that tobacco smoking is associated with an increased risk of MS occurrence and potential adverse effects on the progression of disability. The aim of our research at the University of Nottingham was to investigate the influence of tobacco smoking on the natural history of multiple sclerosis from the risk of occurrence to mortality. Our age and sex matched case-control study showed that tobacco smoking is associated with 64% higher risk of MS occurrence. However, we did not observe any association between parental smoking during patients’ childhood
  • 10. Pilates exercise session McGoldrick K Physiotherapist and Pilates Instructor A gentle Pilates class introducing this body conditioning exercise method. Pilates works the body as a whole, so muscles work together, weak muscles are strengthened and overused or tight muscles are strengthened and lengthened. All the exercises target the deep postural muscles so the torso becomes stabilized, allowing the body to rebalance, and bringing it into correct alignment. From this central core, the Pilates method works by adjusting the intensity of each exercise by using different levers (arms and legs) and resistance so allowing each participant to work at their own level. Joseph Pilates believed that by concentrating on precision of movement, awareness of breath control and a continuous flowing movement, the exerciser is able to correct abnormal patterns of movement and see the effects carry over into daily function. This class will aim to demonstrate how this technique can benefit both the healthy health professional as well as those suffering with a range of musculoskeletal problems. We will also explore how this method can be modified for our clients with varying symptoms of MS. Monday 4 November Breakfast seminar (8:00 - 9:00) The new treatment paradigms for MS: treat-2-target Giovannoni G Professor of Neurology, Barts and The London School of Medicine and Dentistry It is clear that multiple sclerosis (MS) is like an iceberg with a lot of the disease occurring early on and beneath the surface of the water. It is clear that clinical disease activity, i.e. relapses and disease progression, doesn’t capture all of the disease. The acquisition of asymptomatic MRI activity in the form of new T2, or Gd-enhancing T1 lesions, whilst on a disease modifying therapy is associated with a poor prognosis. I am therefore promoting the strategy of treating-2-target; the target being NEDA or no evidence of disease activity. This approach is being adopted from the rheumatologists who developed this strategy about 15 years ago to treat rheumatoid arthritis (RA). In general, rheumatologists treat RA very early, and very aggressively, and escalate treatment rapidly to the more active biological therapies if there is no response to first line treatments. Their aim is to prevent joint damage occurring from ongoing inflammation. This approach has worked well in RA; there has been a large drop-off in the number of RAers needing joint replacements. The difference between MS and RA is that we don’t have the option of replacing the brain and spinal cord; there simply is no fall back option for MSers. The aim of developing a treat-2-target algorithm is to do the same for relapsing MSers, what has been done for RAers. If we adopt this active/aggressive approach MSers will have a better chance of preventing, or at least delaying, the onset of secondary progressive MS. Concurrent seminar sessions (9:15 - 10:45) Seminar 1: Reading an MRI Chard D Senior Clinical Research Associate, UCL Institute of Neurology In this session we will look at the use of magnetic resonance imaging (MRI) in the management of people with multiple sclerosis (MS). We will first learn about the basic principles of MRI, its strengths and weaknesses. We will then move on to the use of MRI in the diagnosis of MS, and in monitoring disease activity. Speakers’ abstracts and the risk of MS. Our cohort analysis showed that tobacco smoking is associated with more severe disease, significantly higher levels of psychological and physical disabilities, faster disability progression and shorter time to the progressive stage of the disease. In addition, tobacco smoking was found to be associated with a more than 2.5-fold increase in the risk of premature death and almost 10 years reduction in the patients’ life expectancy. What we also found was that smoking cessation could be beneficial in reducing the risk of disability progression and premature mortality in patients with the diagnosis of MS. 9
  • 11. Seminar 2: Tobacco smoking and MS Constantinescu C Professor of Neurology, University of Nottingham Manouchehrinia A Academic Division of Clinical Neurology, University of Nottingham The abstract for this session can be found under Sunday’s listing (page 8) Seminar 3: Acceptance and commitment therapy for people with MS Speakers’ abstracts 10 Gillanders S MS Specialist Clinical Neuropsychologist, NHS Lothian Gillanders D Academic Director, Doctoral Programme in Clinical Psychology, University of Edinburgh Acceptance and commitment therapy (ACT) is a therapeutic approach that can be used with people who have MS. It is part of the family of cognitive and behavioural therapies. Its aims are to assist people in meeting the challenges of MS by using mindfulness and acceptance strategies, and to support them to do the things that matter most in their lives. ACT is a model that can be applied individually, in groups or with couples and families who are facing the challenges of adjusting to living a full life with MS. In this seminar, delegates will get an overview of the ACT model and how it is applied to problems of adjustment and living with MS. This seminar will contain some case examples to illustrate the relevance of ACT to living with MS, some suggested strategies for beginning to use ACT, and some brief experiential exercises, including mindfulness. Seminar 4: Research in practice: how to survive and thrive Freeman J Reader in Physiotherapy and Rehabilitation, University of Plymouth Ward-Abel N Lecturer Practitioner in MS, Birmingham City University This interactive workshop, which is aimed at novice researchers, provides a pragmatic approach to undertaking research in practice. Based around a real-life case scenario, in which many lessons were learnt, we will discuss some of the key issues you need to consider at each stage of the research process. By highlighting the mistakes we have made in our own research practice we aim to make your own life easier by preventing you making the very same mistakes! We will allow time within the session to discuss some of the issues you may be currently facing in undertaking research within your own setting, and will help to problem solve these with you. Throughout the session we will signpost you to a wide range of practical resources so that you can access help once you return to your own workplace environment. Seminar 5: Occupational science and its application to occupational therapy practice Royal E Specialist Occupational Therapist, Buckinghamshire Healthcare NHS Trust Turner A Professor Emerita of Occupational Therapy, University of Northampton Occupational therapy is a profession that has often found issues with its identity. While the profession’s roots are based in humanistic concepts, its practice has grown within statutory, often medically dominated settings that have often placed demands on OTs and have caused problems with their professional identity. In recent years OT academics reflected on this situation and the development and growth of occupational science has begun to address not only the profession’s need for a unique body of knowledge but has also helped OTs to focus their practice around the philosophy and evidence base that they alone own. This workshop explores the basis of our profession and debates how this currently impacts on its practice. It explores the concept of occupational science and introduces some of the ideas that underpin it. We will look at how occupational science can be accessed and applied to your professional practice when working with people with multiple sclerosis. Participants will have the opportunity to look at a case study through occupational science ‘spectacles’ and will be presented with a case plan using an occupational science based model of practice.
  • 12. Concurrent seminar sessions (11:15 - 12:45) Seminar 1: Transition to secondary progressive MS Chataway J Consultant Neurologist, Honorary Senior Lecturer, National Hospital for Neurology and Neurosurgery, London Hourihan S Clinical Specialist Occupational Therapist, National Hospital for Neurology and Neurosurgery, London This seminar will reflect on the experiences of two clinicians working within a multi-disciplinary team model of service provision for people with MS (pwMS) as they transition from RRMS to SPMS. It will provide: • an overview of how to identify the transition to SPMS • an understanding of the experience of pwMS as they transition to SPMS • knowledge of how to assist pwMS in the transition stage • a practical example of a service providing transition support The experience of transition to SPMS is an emotional journey, impacting on relationships and occupation. PwMS may also report feelings of abandonment by health professionals. It is hoped that this seminar might lead to a deeper understanding of the process of transition, in order that clinicians may better support the needs of such individuals in clinical practice. Seminar 2: Therapy tips for nurses Bostock P Consultant Occupational Therapist in Neurology, Staffordshire and Stoke on Trent Partnership NHS Trust Cleary H Neuro-specialist Physiotherapist, Haringey Neuro Conditions Team Service provision for people with MS varies across the UK from teams which include therapists and MS nurses to MS nurses working in isolation. Although where possible clients should be referred to a therapist for assessment and appropriate management of their concerns, sometimes this is not possible or it would be helpful if an MS nurse could offer some interim advice. ‘Therapy tips for MS nurses’ will cover topics that have been requested by those attending and also some topics which we feel MS nurses would benefit from knowing more about. The topics will include posture and balance, fatigue, work, cognition, spasticity and exercise. We hope those attending will leave feeling more equipped to address some of the issues they may face during their clinics. Seminar 3: Psychology of medication adherence Horne R Professor of Behavioural Medicine, UCL School of Pharmacy, London Nonadherence is common even in severe illnesses such as MS. Despite the high health and financial costs of nonadherence for individuals and society, effective interventions remain elusive. Systematic reviews show that most interventions to improve adherence have only limited effects. This presentation will examine the reasons for this and what we might do to improve the situation. Drawing on research across long-term conditions it will dispel common myths about the reasons for nonadherence and present a Perceptions and Practicalities Approach (PAPA) for developing more effective, patient-centred interventions to support informed choice about treatments and optimal adherence. The PAPA is based on the principle that nonadherence is best understood as a variable behavior with intentional and unintentional causes: most of us are nonadherent some of the time. Unintentional nonadherence is linked to limitations in capacity or resources that reduce the ability to adhere to the treatment as intended. Intentional nonadherence is the product of a decision informed by our beliefs about Speakers’ abstracts More than two-thirds of people with relapsing remitting multiple sclerosis (RRMS) will experience a progression to secondary progressive multiple sclerosis (SPMS) within approximately 30 years of disease onset, often with 10-15 years. The resulting impairments result in disability accumulation and challenge their quality of life. 11
  • 13. the illness and treatment. Adherence support should be tailored to the needs of the individual and address both the perceptual factors (eg beliefs and preferences) and practical factors (eg capacity and resources) influencing our motivation and ability to adhere to the treatment. Seminar 4: Low-energy fatigue in MS: how can exercise help? Saxton J Professor of Clinical Exercise Physiology, University of East Anglia Speakers’ abstracts 12 Low-energy fatigue is a highly prevalent amongst people with multiple sclerosis (pwMS), with over half of the MS population describing it as one of their most severe symptoms. Furthermore, debilitating symptoms of fatigue are often present in the earliest stages of MS, when there is little evidence of disability. As the effectiveness of pharmacological and psychosocial treatments for MS fatigue is likely to be modest at best, alternative approaches to its management, particularly interventions that can be incorporated into long-term self-management strategies, are urgently needed. In contrast to traditional energy conservation approaches to fatigue management, ‘exercise therapy’ is now more frequently being recommended to pwMS because of the purported impact it can have on fatigue symptoms and other health outcomes, such as function and quality of life. Indeed, exercise is a costeffective self-management strategy which has the potential to induce sustainable improvements in MS fatigue symptoms. This seminar session will provide an overview of current knowledge about the impact of MS fatigue before considering how exercise might be used as an effective self-management strategy. Seminar 5: The practical clinical use of functional electrical stimulation (FES) in the treatment of people with MS Singleton C Clinical Specialist (FES) West Midlands Spasticity Network Project Manager, West Midlands Rehabilitation Centre Swain I Director of Clinical Science Engineering, Salisbury NHS Foundation Trust and Clinical Director, Odstock Medical Limited Virtually all people with MS will experience difficulties with their walking at some time during the progression of the disease. One of the first problems that often become apparent is the inability to dorsiflex the foot during swing phase leading to a ‘dropped foot’ which makes walking less efficient and can increase the risk of tripping. FES works by electrically stimulating the common peroneal during swing phase to dorsiflex the foot with timing controlled by a foot switch in the shoe, or by an accelerometer. NICE Guidance IPG278 was issued in 2009 on the use of FES for dropped foot of central nervous system origin. This session covers a range of topics on the use of FES in pwMS. Plenary session 2 (14:00 - 15:45) Clinical trials in secondary progressive MS Chataway J Consultant Neurologist, Honorary Senior Lecturer, National Hospital for Neurology and Neurosurgery, London Secondary progressive multiple sclerosis (SPMS) is one of the major unmet needs in MS management. Using standard trial design it can take 10 years from a phase 2 trial inception to phase 3 trial finish. Over the last 2 decades, over 5000 SPMS patients have completed major phase 3 trials, with trial durations of 2-3 years. The overwhelming conclusion is that these have been negative, with the few positive signals due to co-enrolment of a more transitional RRMS/SPMS population or considering a sub-set of the major outcome. The current consensus is that SPMS is most likely to respond to a neuroprotective strategy, and indeed there are a number of promising candidate drugs to test. The clear challenge is to test multiple drugs simultaneously in a timely and efficient manner. This talk will look at ‘how to design at trial in SPMS’, recent trials in SPMS (including Lamotrigine, MS-STAT and CUPID), before moving onto new and up-coming trials such as MS-SMART. NHS reforms – challenges and opportunities for MS care Middleton K Chief Allied Health Professions Officer, NHS England Synopsis: Through this presentation, I will provide a general overview of the context within which clinicians are working, with particular emphasis on the changes to the healthcare system since 1 April 2013. I will highlight the specific challenges and opportunities for clinicians required to continue to deliver a high quality service to
  • 14. patients with limited resources and the need to not simply provide a lesser version of what we had before, but something potentially very different. Background: The context within which clinicians work shapes the nature of the service model for patients and how and who clinicians need to exert influence over. Currently this context is provided by the increasing demands on the system, the difficult economic climate in which we work, The Health and Social Care Act 2012 and the Francis Inquiry into events at Mid-Staffordshire Hospital. Concurrent seminar sessions (9:30 - 11:00) Seminar 1: Practical management of ataxia and balance impairment Bunn L Lecturer in Neurological Physiotherapy and Motor Control, Plymouth University Hendrie W Specialist Physiotherapist in MS, Norwich Ataxia, from the Greek word meaning ‘confusion’ or ‘absence of order’, is the term applied to disorders of motor coordination. It can affect up to 85% of people with multiple sclerosis and can arise from damage to sensory, vestibular or cerebellar pathways. Its impact on activities of daily living can range from mildly irritating in the early stages to a condition so severe that purposeful movement becomes impossible. A Cochrane review found that there is not enough evidence to suggest that any treatment (drugs, physiotherapy or neurosurgery) providing sustained improvement in ataxia or tremor. Although there is some evidence to suggest that a restorative approach may be beneficial (i.e. neuroplasticity), to date, rehabilitation has largely been underpinned by a pragmatic, compensatory approach, with the emphasis on function. The Cochrane review concluded that standardised, well-validated measures of ataxia need to be developed and validated in future research. Most options for evaluating ataxia focus on tremor as the principal feature but this excludes other significant components with the potential to affect function, such as balance impairment. The first part of this talk will discuss the compensatory approaches available for upper limb function and mobility as these can often give more immediate relief to people who are struggling to function independently. It will describe numerous evidence based and anecdotal ways of helping people with ataxia which have been found to be useful over the past thirty years of working with this condition. The second part will present two recently validated outcome measures for assessing ataxia signs in those with pure cerebellar disease. It will also present evidence from the 2013 update of the physiotherapy management of ataxia guidelines published by Ataxia UK and discuss the generalisability of these recommendations to those with MS. It will consider future management options, referring specifically to research developing targeted balance rehabilitation interventions for people with ataxia. Seminar 2: Future MS therapies Ramtahal J Consultant Neurologist and Clinical Senior Lecturer, South Devon Healthcare NHS Foundation Trust and University of Exeter Medical School The natural history of multiple sclerosis has changed since the advent of disease-modifying drugs in the early 1990s. The increasing number of first-line and second-line treatment options, together with the variable course of the disease and patient lifestyles and expectations, makes the therapeutic decision a real challenge. MS practitioners need to know not only the specific risks and benefits of single drugs, but also about drug interactions, either in simultaneous or serial combination therapy, and patient comorbidities, preferences, and fears. This has to be put into perspective, considering also the risks of untreated disease in patients with different clinical and radiological characteristics. There is no single best treatment strategy, but therapy has to be tailored to the patient. This is a time-consuming task, rich in complexity, and influenced by the attitude towards risk on the parts of both the patient and the clinical team. The broader the MS drug market becomes, the harder it will be for the clinician to help the patient decide which therapeutic strategy to opt for. We will discuss the future MS drugs that may help our patients. Speakers’ abstracts Tuesday 5 November 13
  • 15. Seminar 3: Cognition and MS Rose A Consultant Neuropsychologist, East Sussex Speakers’ abstracts For many people with MS, cognitive problems are even more difficult to confront and accept than the physical symptoms they experience. Cognitive deficits are ‘hidden’ and as such frequently misunderstood by the person who experiences them and also by others. They can create complications in relationships, in the workplace, at home and for the psychological wellbeing individual with MS. For many people, dealing effectively with cognitive challenges requires significant life changes but it is a confusing path and sometimes changes are made without need, or changes are not made when they need to be. Therefore it is important to identify cognitive changes accurately and in a timely manner. Often as healthcare professionals there is an expectation that we hold the keys to understanding these issues. However, all too often healthcare professionals working in MS can feel overwhelmed and unsure as to how to assess and how to help, are naturally fearful of doing or saying the wrong thing and are being stretched by lack of time and resources. As a result cognitive issues can go unchecked. This seminar aims to provide information about cognitive problems in MS and to equip you with information about assessment and self-help strategies you can use with your patients. Seminar 4: The HOPE programme for people affected by multiple sclerosis: a positive approach to self-management 14 Turner A Senior Research Fellow, Applied Research Centre of Health and Lifestyle Interventions, Coventry University Harker V Facilitator, HOPE Programme, Coventry University The HOPE group-based, self-management programme for people affected by multiple sclerosis is underpinned by positive psychology and health psychology theory and practice. HOPE is delivered in six weekly sessions each of 2.5 hours duration. HOPE covers • Goal setting and action planning • Problem solving • Managing fatigue • Managing stress • Relaxation • Sleeping better • Gratitude diary • Scheduling pleasurable activities • Identifying personal strengths • Keeping active After attending HOPE people affected by MS report improvements in • Depression • Fatigue • Psychological and physical aspects of living with MS • Positive affect • Hope Preliminary results show that HOPE MS has the potential to be useful and acceptable for people living with MS. Larger, controlled and longer trials are required to confirm this early promise. By attending the workshop you will participate in some of the HOPE activities and you will also find out how to set up HOPE for people affected by MS and also how to become a HOPE facilitator. For further information go to www.hopeprogramme.co.uk
  • 16. Seminar 5: Alemtuzumab science Jones J Clinical Lecturer Neurology, University of Cambridge Speakers’ abstracts The anti-CD52 monoclonal antibody alemtuzumab (Campath-1H) has proven efficacy in relapsing remitting multiple sclerosis; in a phase 2 trial, compared with interferon beta-1a, alemtuzumab reduced the risks for relapse and sustained accumulation of disability by over 70% at three years, with sustained efficacy at five years. Two phase-3 trials (CARE-MS I and CARE-MS II) have confirmed its efficacy in treatment-naïve patients, and established superiority over interferon beta-1a in patients with disease activity despite first-line therapy. Each cycle of alemtuzumab leads to profound pan-lymphocyte depletion but relatively infrequent dosing allows reconstitution to occur. The rate and degree of recovery varies with cell type: B cells recovery rapidly, whereas T cell lymphopenia is prolonged with CD4 and CD8 cells taking 35 and 20 months respectively to reach the lower limit of normal. For five years after alemtuzumab, and maximally at two years, secondary autoimmune conditions develop. Based on the ‘Cambridge experience’ (prospective observation of 1,105 patient-years), 30% of individuals develop thyroid autoimmunity and 1% have idiopathic thrombocytopenic purpura (ITP) with rare cases of autoimmune haemolytic anaemia, autoimmune neutropenia and Goodpasture’s syndrome. Here I will review the trial data, and will discuss the immunological mechanisms thought to be driving alemtuzumab’s efficacy and side effect profile. Setting up an off licence service Clayton G and Smee J MS Clinical Nurse Specialists, University Hospital of Wales, Cardiff Alemtuzumab (Campath-1H) has been used in the treatment of patients with aggressive relapsing remitting multiple sclerosis at the University Hospital of Wales for 11 years. It is recognised that the management of complicated treatments such as alemtuzumab stretches resources and requires a coordinated effort by healthcare teams to ensure safe practice. As infusion related and disease specific immunological side effects have been recognised with this treatment a protocol was developed to ensure thorough pre-treatment assessment and screening and vigilant ongoing monitoring. This presentation will outline: • pre-treatment selection and screening • information and consent • infusion related side effects • long-term monitoring Plenary session 3 (11:30 - 13:30) Keynote Lecture: Sex, intimacy, relationships and living with MS Cowan A Expert Patient, Sex and Disability Adviser My MS, which I have had for over 25 years, is now secondary progressive and I use a wheelchair. As well as talking generally about living with MS I want to focus on the work I have done over the last few years around sex, intimacy, relationships and disability which are very relevant and important to me. Some of the achievements I am most proud of being involved in include developing a toolkit for health professionals to help them discuss sex and sexuality with their patients; co-writing a chapter for a book entitled ‘Women, Sexuality and the Political Power of Pleasure’ and a piece for the book ‘Beauty in Every Form’. I also appeared on Channel 4’s Sex Education programme, with my husband, to talk about what happens when disability enters an existing relationship. I run workshops where people can share their experiences of sexual issues as they relate to their disability or long-term condition. I have co-created and appeared in performance pieces that look at and challenge questions and attitudes around “what is attractive?” For many, sex, intimacy, relationships and disability are very important strands woven through their lives yet we rarely discuss how important are these issues nor how they are affected by others. I want to share some of my thoughts and experiences with you. 15
  • 17. Exhibitors and supporters Conference exhibitors Zone 2 Zone 3 • Alcura Health • Bambach Saddle Seats • Biogen Idec • Bullen Healthcare • Genzyme • Healthcare at Home • Invacare • Merck Serono • Novartis • Odstock Medical Exhibitors and supporters Zone 1 • Allergan • Bayer Healthcare • B Braun Medical • Biogen Idec • Coloplast • DM Orthotics • Medicotech • Medtronic • Symmetrikit • Talking Mats • Teva UK • Wellspect Healthcare • MS Society • MS Trust • MS Trust Christmas cards • Therapists in MS (TiMS) • UKMSSNA • RiMS Registration Desk (Monday) 16 ms Information zone participants • • • • • • • • • • Castle Froma and Helen Ley Care Centres Coventry and District Osteoporosis Support Group Crossroads Care, Coventry Warwickshire English Federation of Disability Sport (EFDS) GEMSS Patient Survey Listening Books MS Trust (Fundraising) MS Trust (Information) Patient Information Forum (PiF) Royal College of Nursing ms Technology zone participants • Abilitynet • Aidis Trust • CarePair • Hydrate for Health • NRS Healthcare • Medpage Limited T/A Easylink UK • RSLSteeper • Tunstall Healthcare (UK) Ltd • Tynetec Ltd
  • 18. Session index Day Time Session Subject Speaker Location Sun Targeting progression - the International Thompson A Main conference room Rog D Main conference room 13:45 Plenary 1 Progressive MS Collaborative Sun 14:30 Plenary 1 Update on latest disease modifying drug therapies for relapsing remitting MS Sun 16:30 Seminar Tobacco smoking and MS Constantinescu C Stoneleigh Warwick Manouchehrinia A Sun 16.30 Pilates exercise session McGoldrick K Directors Sun 19:00 Open Forum Succession planning Quinn D Stoneleigh Warwick Mon 6:50 Pilates exercise session McGoldrick K Stratford Manor Hotel Mon 8:00 Breakfast seminar The new treatment paradigms for MS: treat-2-target Giovannoni G Main conference room Mon 9:15 Seminar 1 Reading an MRI Session index Stratford Chard D Mon 9:15 Seminar 2 Tobacco smoking and MS Constantinescu C Avon Manouchehrinia A Mon Acceptance and commitment therapy Gillanders D for people with MS Gillanders S 9:15 Seminar 3 Othello Mon 9:15 Seminar 4 Research in practice: how to survive and thrive Freeman J Ward-Abel N Stoneleigh Warwick Mon 9:15 Seminar 5 Royal E Turner A Directors Mon 11:15 Seminar 1 Transition to secondary progressive MS Chataway J Hourihan S Stratford Mon 11:15 Seminar 2 Therapy tips for nurses Bostock P Cleary H Avon Mon 11:15 Seminar 3 Psychology of medication adherence Horne R Othello Mon 11:15 Seminar 4 Low-energy fatigue in MS: how can exercise help? Saxton J Stoneleigh Warwick Mon 11:15 Seminar 5 The practical clinical use of functional electrical stimulation (FES) in the treatment of people with MS Singleton C Swain I Directors Mon Clinical trials in secondary progressive MS Chataway J Main conference room Mon 14:45 Plenary 2 NHS reforms – challenges and opportunities for MS care Middleton K Main conference room Mon 15:45 GEMSS II QA session Mynors G Avon Mon 16:30 Open Forum Second line treatments Shaw P Stoneleigh Warwick Mon 16.30 Pilates exercise session McGoldrick K Directors Tues 6:50 Pilates exercise session McGoldrick K Stratford Manor Hotel Tues 9:30 Seminar 1 Practical management of ataxia and balance impairment Bunn L Hendrie W Stratford Tues 9:30 Seminar 2 Future MS therapies Ramtahal J Avon Tues 9:30 Seminar 3 Cognition and MS Rose A Othello The HOPE programme for people affected by multiple sclerosis: a positive approach to self-management Turner A Harker V Stoneleigh Warwick Tues 9:30 Seminar 5 Alemtuzumab science and setting up an off licence service Clayton G Jones J Smee J Directors Tues Cowan A Main conference room 14:00 Plenary 2 Tues 9:30 Seminar 4 11:45 Plenary 3 Occupational science and its application to occupational therapy practice Sex, initimacy, relationships and living with MS 17
  • 19. Subject index Subject Speaker Abstract on page 10 Alemtuzumab science and setting up an off licence service Clayton G Jones J Smee J 15 Clinical trials in secondary progressive MS Chataway J 12 Rose A 14 Future MS therapies 18 Gillanders D Gillanders S Cognition and MS Subject index Acceptance and commitment therapy for people with MS Ramtahal J 13 HOPE programme for people affected by multiple sclerosis: A positive approach to self-management Turner A Harker V 14 Low-energy fatigue in MS: how can exercise help? Saxton J 12 New treatment paradigms for MS: treat-2-target Giovannoni G 9 NHS reforms – challenges and opportunities for MS care Middleton K 12 Occupational science and its application to occupational therapy practice Royal E Turner A 10 Practical clinical use of functional electrical stimulation (FES) in the treatment of people with MS Singleton C Swain I 12 Practical management of ataxia and balance impairment Bunn L Hendrie W 13 Psychology of medication adherence Horne R 11 Reading an MRI Chard D 9 Research in practice: how to survive and thrive Freeman J Ward-Abel N 10 Sex, intimacy, relationships and living with MS Cowan A 15 Targeting progression - the International Progressive MS Collaborative Thompson A 8 Therapy tips for nurses Bostock P Cleary H 11 Tobacco smoking and MS Constantinescu C Manouchehrinia A 8 Transition to secondary progressive MS Chataway J Hourihan S 11 Update on latest disease modifying drug therapies for relapsing remitting MS Rog D 8
  • 20. Chesford Grange Ground Floor 3 1 Map 2 4 5 6 7 10 19 11 8 12 10 9 Ground Floor 1. Restaurant 2. Terrace Bar Technology Zone 3. tratford – Seminar 1 S and Information Zone 4. Manor Bar 5. Reception 6. Main Entrance 7. Exhibition Zone 2 8. Exhibition Zone 3 9. Events Centre Entrance (coach pick up/drop off) 10 Exhibition Zone 1 11. Main Conference Room 12. Stairs to Directors – Seminar 5 Lower Ground Floor 2 3 1 2 1 4 1. Stratford – Seminar 1 and Information Zone 2. Avon – Seminar 2 3. Stoneleigh Warwick – Seminar 4 4. Reception 1. Othello – Seminar 3 2. Oberon – Creative Zone