Our Association webinars run throughout the year – to bring you thought provoking content on a range of practice areas presented by subject experts.
You have the chance to ask questions or discuss what you have heard. They are designed to fit within a working day, lasting between 60 and 90 minutes.
The aims and objectives for each event are set out clearly so you should find something that meets your needs and grabs your interest.
If you have suggestions for future webinars subjects for us to consider, please contact us at [email protected]
Webinar recordings
Types of care and support
Dispelling the myths of hospice care
Presented by Claire Stockdale, Palliative Medicine Consultant and Lisa Sievwright, MND and Neuropalliative Specialist Therapist.
NHS Continuing Healthcare (CHC) and MND
Presented by Hayley Koumas, CHC Improvement Co-ordinator at the MND Association.
Conversation with... An MND Network Co-ordinator
Presented by Caroline Bidder, Network Lead Care Coordinator, South Wales MND Care Network.
Conversation with... MND Association financial and equipment support services
Presented by Pauline Matheson-Marks, Head of National Care, MND Association.
Navigating social care with MND in mind
Presented by Kerry Connor, Social Worker, Best Interests Assessor and Team Manager at Keech Hospice and Diane Aldridge, Hospital Neuro Social Worker and Best Interests Assessor at Salford Royal Foundation Trust.
Familial MND
Familial MND – what do genetics tell us?
Presented by Professor Martin Turner, Professor of Clinical Neurology and Neuroscience at Oxford University and Consultant Neurologist to the John Radcliffe Hospital, Oxford.
Kennedy's disease
This webinar recording has been split into four parts:
An introduction to Kennedy’s disease
Professor Pietro Fratta introduces the history and genetics of Kennedy’s Disease, he explores the clinical features of the disease and introduces the specialist clinic at the National Hospital for Neurology and Neurosurgery, which sees patients from across the UK.
The Kennedy’s Disease Clinic and treatment options
Dr Dipa Jayaseelan provides an overview of the extra neuromuscular manifestations of Kennedy’s Disease which are important when understanding the difference between it and MND. She also explains how patients are managed at the clinic and the current treatment options available to them.
Watch recording
Bulbar and respiratory features of Kennedy’s disease
Luca Zampedri, Clinical Research nurse at the Kennedy’s Disease clinic, explores the extent and frequency of bulbar symptoms in Kennedy’s Disease and provides guidelines to managing speech, swallow and respiratory problems for this group of patients.
Physiotherapy approaches to supporting people with Kennedy’s disease (also referred to as spinal-bulbar muscular atrophy (SBMA))
Dr Gita Ramdharry focuses on the use of physiotherapy to support people living with Kennedy’s disease. She covers balance and explores toleration of different types of exercise amongst patients in this group. She concludes with a case study to demonstrate clinical reasoning.
Multidisciplinary team working
Strengthening and improving multidisciplinary care for people with MND - TONiC-ALS study
Professor Carolyn A Young introduces the findings from the TONiC-ALS study on quality of life, and how this can be used to improve multidisciplinary care for people with MND.
MND patient and carer perspectives
Maintaining a positive mindset in the face of MND challenges
Presented by Hazel Carter, who lost her husband to MND.
MND and the impact on carers and their families
Presented by Melanie Worthington, Service Development Manager at the MND Association, who lost her husband to MND.
‘This is my journey’ – people with MND and their carers share their perspectives
This pre-recorded session featured Pauline Callagher, MND Care Centre Co-ordinator at Preston MND Care and Research Centre, interviewing a selection of MND patients sharing their perspectives and experiences.
Useful resources
Useful links to support this webinar
Patient questions document with accompanying notes
"That can't be right - I want a second opinion" - Patients' reactions to a diagnosis of MND
This webinar, presented by Pauline Callagher, Care Centre Co-ordinator at Preston MND Care and Research Centre, explored the range of reactions of people experience following a diagnosis of MND.
Supporting families
The 'whole family' approach
Presented by Samantha Holden-Smith, Manchester Care Centre Co-ordinator and Specialist Nurse.
Speech, communication and AAC
Taking time to talk MND
This webinar, presented by Jennifer Benson, Independent Speech and Language Therapist, aims to support health and social care professionals - with a particular focus on SLTs - who may be new to working with MND to be prepared for their first few sessions with a person with MND and their family.
New and upcoming technology - I will always be me
Presented by Richard Cave, MND SLT Project Manager at the MND Association.
Conversation with... a speech and language therapist
This session featured Richard Cave, MND SLT Project Manager at the MND Association, answering questions about Relate, a new app from Google.
Conversation with... Alexa
Richard Cave, SLT Project Manager at the MND Association, answers questions on how voice assistants such as Alexa can help people with MND to maintain their independence.
Psychological support
Psychological care for people living with MND
This webinar, hosted by Rachel Woolrich, Clinical Psychologist, explores psychological support for people with MND, including Acceptance and Commitment Therapy (ACT).
Anticipatory grief
This webinar, hosted by Carol Bradley, Advanced Nurse Practitioner, explores anticipatory grief in MND.
Psychological support for people with MND
This webinar, hosted by Dr Emily Mayberry, explores how all members of the MND multidisciplinary team can use psychological support principles to improve care and support.
Avoiding burnout - Caring for yourself when you are supporting people affected by MND
Presented by Dr Sian Hocking and Dr Emily Mayberry, this recorded webinar will give you a range of methods to support your own wellbeing. We have included a range of practice models for you to do as an individual or in pairs/teams which can be useful when dealing with pressures and being more compassionate with yourself.
Resources
Psychological Tools - Compassion Focused Therapy
Dialectical Behaviour Therapy (DBT) Tools
Learning and Practices - Compassion
WHO - Doing What Matters in times of stress
Activities
10-minute Pause Space
Self or pairs 5-minute Me Space
Team Activity - 20 minute Care Space
Team Activity - 60 minute Compassion Circle
Relationships
Let’s talk about sex and relationships in MND
This webinar is presented by Rachael Marsden, Nurse Consultant for MND at John Radcliffe Hospital, Oxford. Rachael explores discussing sexual wellbeing in the MND clinic using the Ex-PLISSIT model and shares her experiences of approaching this subject as a professional.
Mobility, movement and equipment
Exercise and MND
Kelly Smith, Advanced Physiotherapist at Newcastle MND Care Centre and Charlotte Massey, Specialist Neuromuscular and Respiratory Physiotherapist at Sheffield Institute for Translational Neuroscience explored appropriate exercise for people with MND.
MND Wheelchair Pathway
This event, hosted by Jenny Rolfe, Alison Johnston and Lynne Hills, launched our new MND Wheelchair Pathway. It is designed to support services to review and evaluate their wheelchair provision for people with MND.
Useful resources
Wheelchairs information sheet for professionals
Equipment and wheelchairs information sheet for people with MND
Equipment solutions for MND - your questions answered
This session featured Jenny Rolfe (Consultant Occupational Therapist), Phillippa Sharp (Specialist Occupational Therapist, Oxford University Hospitals NHS Foundation Trust) and Malabika Ghosh (Principal OT for Cognition & Clinical Academic Fellow, Lancashire Teaching Hospitals, NHS Foundation Trust) answering submitted questions on equipment solutions for MND.
Conversation with... Alexa
Richard Cave, SLT Project Manager at the MND Association, answers questions on how voice assistants such as Alexa can help people with MND to maintain their independence.
Nutrition and swallowing
A focus on tube feeding
Presented by Saba Bhokar - Consultant Respiratory Physician, Thomas Welbank - Enteral Nutrition Service Lead/Advanced Clinical Practitioner, and Artika Datta - Advanced Specialist Dietitian.
A focus on oral nutrition in MND: current evidence, managing risks and exploring good practice
Presented by Sean White - Dietitian and NIHR Doctoral Fellow, Erin Probert – Clinical lead Speech & Language Therapist, Christina Federico – Senior Neurosciences Dietitian and Emma Wood, Clinical Lead Dietitian Neurosciences.
Expiratory Muscle Strength Training (EMST) for patients living with MND
Presented by Jodi Allen, Specialist Speech and Language Therapist at the National Hospital for Neurology and Neurosurgery.
Respiratory symptoms
Models of respiratory care to manage MND patients in the community
Presented by Rachel Milne, Senior NIV Respiratory Physiotherapist at Bristol Royal Infirmary.
Cough augmentation in MND - more than assisting a cough
Presented by Ema Swingwood, Respiratory Pathway Lead Physiotherapist and Chair of the ACPRC.
Conversation with... a respiratory specialist
This session featured Alison Armstrong, Nurse Consultant – Long Term Ventilation at Newcastle upon Tyne NHS Foundation Trust, answering questions about ventilation in MND.
Expiratory Muscle Strength Training (EMST) for patients living with MND
Presented by Jodi Allen, Specialist Speech and Language Therapist at the National Hospital for Neurology and Neurosurgery.
Pain management
Pain management for MND
Presented by Dr Rhys Roberts, Consultant Neurologist at Addenbrooke’s Hospital – Cambridge.
Medicines
Anticipatory medications for MND
Presented by Dr Trish Sealy, Consultant in Palliative Medicine at South Tees Hospitals NHS Foundation Trust.
Cognitive change and frontotemporal dementia (FTD)
Identifying and managing behaviour symptoms in MND: from the MiND-B to the MiNDToolkit
This session, presented by Professor Eneida Mioshi, University of East Anglia, explores MiND-B, a tool to detect behavioural symptoms in MND, and the MiNDToolkit, a novel online psychoeducational intervention to manage behavioural symptoms in MND.
A confirmed case of FTD
Presented by Dr Malabika Ghosh – Consulting Specialist, Lancashire Teaching Hospitals NHS Foundation Trust.
Introduction to the Mental Capacity Assessment Toolkit (MCAST)
This session featured Dr Mark Jayes, Research Fellow in Communication Disability, Manchester Metropolitan University, introducing the MCAST to support mental capacity assessments.
Palliative and end of life care
Dispelling the myths of hospice care
Presented by Claire Stockdale, Palliative Medicine Consultant and Lisa Sievwright, MND and Neuropalliative Specialist Therapist.
Anticipatory grief
This webinar, hosted by Carol Bradley, Advanced Nurse Practitioner, explores anticipatory grief in MND.
The place of hospice care in MND
This webinar, hosted by Jenny White and Lucy Heaps from Garden House Hospice Care explores the role of the hospice, in the care of people living with MND and their carers.
Talking about dying
This session, delivered by Sunday Times bestselling author Dr Kathryn Mannix, enabled attendees to explore ways to approach honest conversations about end of life care with people with MND and their families, carers.
