Hosted by Neurosciences Specialist Group
The day will be a great opportunity for networking, and we hope to see many of you there! The day will centre around long-term neurological conditions, including updates around MND, Prolonged Disorders of Consciousness and FND.
Understanding Prolonged Disorders of Consciousness - Dr Suraj Parikh, Consultant in Rehabilitation Medicine, Birmingham Community Healthcare NHS Foundation Trust.
An overview on the nature of consciousness, the types of prolonged disorders of consciousness and relevant clinical and ethical considerations in the care and management.
About Dr Parikh - He is a Consultant in Rehabilitation Medicine working in both acute and community Trusts in Birmingham. He has an interest in hyperacute rehabilitation particularly relating to patients with stroke and prolonged disorders of consciousness.
Experiences and learning points from best interest decision making for people in Prolonged Disorders of Consciousness (PDOC) about CANH at the Royal Hospital for Neuro-disability - Erin Probert, Clinical Lead Speech and Language Therapist, Royal Hospital for Neuro-disability.
Erin will be talking about the development of processes for raising and making these decisions at the Royal Hospital for Neurodisability, and some of the experiences, challenges and reflections of the clinical teams involved.
About Erin - She has worked at the RHN with people with complex acquired brain injury and progressive neurological diseases for the past 10 years. She has a special interest in mental capacity assessment and best interests decision making, complex dysphagia management, and neuropalliative care.
HighCALS Study and design of OptiCALS in MND - Sean White, NIHR Doctoral Fellow, Department of Neuroscience, University of Sheffield.
Sean will be presenting the findings from the research completed throughout the NIHR HighCALS programme grant to date and how these findings were used to guide the development of the OptiCALS complex nutritional intervention for people with MND which is currently being evaluated in a multicentre randomised controlled trial.
About Sean - Since qualifying as a dietitian in 2001 the majority of Seans career has been as a home enteral feed dietitian at Sheffield Teaching Hospitals NHS Foundation Trust. Sean has been HEF Clinical Lead for PENG since 2014. Sean has developed an academic and clinical interest in the nutritional management of people living with motor neuron disease (MND). He was involved in the development of the mytube website (https://mytube.mymnd.org.uk/), an information resource for people with MND considering gastrostomy placement. Following completing the NIHR funded MSc Clinical Research in 2015, Sean has pursued a clinical academic career. This has included being co-applicant on the NIHR programme grant, HighCALS, a 6 year programme of research involving the development and evaluation of a complex oral nutrition support intervention for people with MND. Sean is currently in the final 6 months of his NIHR funded Clinical Doctoral Research Fellowship which is focusing on how people with MND are supported to make decisions about gastrostomy placement.
An evaluation of the use of nutritional biomarkers in MND: a prospective, observational, longitudinal, cohort study - Dr Sarah Roscoe, Post Doctoral Research Associate, University of Sheffield.
About Sarah - She is a postdoctoral research associate at the Sheffield Institute for Translational Neuroscience (SITraN), The University of Sheffield. Sarah's research is focussed on nutritional and metabolic assessment in motor neuron disease (MND). My PhD project aimed to propose a suitable and pragmatic approach for the assessment of nutritional state in people living with MND. To do this, she conducted a longitudinal, observational study which evaluated the utility of a range of nutritional biomarkers, including the assessment of body composition, dietary intake, energy expenditure and biochemical analytes.
Life’s Good, it’s the disease that’s the problem - Hazel Carter, Philanthropic author and speaker.
Hazel’s presentation covers the impact of receiving a diagnosis of motor neurone disease, how the disease progressed, what help and support the couple received from hospices etc, the couples strategies for staying positive.
More about Hazel - She is an educator, philanthropic award winning author, volunteer at a hospice and Trustee of the MND association. Over 500 copies of her book “Life’s Good, It’s the disease that’s the problem”, have been purchased since publication in June 2023. Hazel donates 100% of all proceeds from sales of her book, she also donated a kidney to her brother in June 2022. For more information go to https://lifesgoodbook.co.uk. Author of "Life's Good - it's the disease that's the problem" https://lifesgoodbook.co.uk. Volunteer for Marie Curie, and Motor Neurone Disease Association.
Winner - Inspirational Author Award 2023 - Ladies First Professional Development
Finalist - Inspirational Women Award 2023 - Ladies First Professional Development
Public speaking topics (for the public and healthcare professionals)
"Life's Good - It's the disease that's the problem" - inspirational true story about love and courage.
"Elaine's coming out" - saving a life by donating a kidney.
Public speaking topics (for leaders in business)
"When the going gets tough, the tough get going" - the power of resilience, determination and a positive mindset.
Navigating the Unknown: A Dietitian's Perspective on Functional Neurological Disorder - Charlotte Boscoe, Neurorehab Specialist Dietitian, Queen Mary's Hospital, St George's University Hospitals NHS Foundation Trust.
Charlotte will explore Functional Neurological Disorder (FND) emphasising the scarcity of guidelines in this underfunded and underresearched field. Drawing from experiences at the Wolfson Centre for Neurorehabilitation, the talk will delve into the role of dietitians in FND management, covering the MDT approach and concluding with practical strategies for holistic patient care.
*Subject to change
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