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Motor Neurone Disease

Motor Neurone Disease. Gill Craig Carolyn Webber Motor Neurone Disease Specialist Nurses Clinical Lead Dr Ian Morrison. What is Motor Neurone Disease?. Devastating Incurable Progressive. Motor Neurone Disease

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Motor Neurone Disease

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  1. Motor Neurone Disease Gill Craig Carolyn Webber Motor Neurone Disease Specialist Nurses Clinical Lead Dr Ian Morrison

  2. What is Motor Neurone Disease? • Devastating • Incurable • Progressive

  3. Motor Neurone Disease Is characterised by progressive degeneration of motor neurones or nerves in the brain and spinal cord • Upper Motor Neurones • Lower Motor Neurones • Clinico-pathological syndrome with a number of aetiologies

  4. MND in Scotland • Median survival 3 years after symptom onset • Approximately 200 incident cases/year in Scotland (62% increase since 1989) • Prevalence of approximately 450 • In Tayside, there are approximately 50 cases • 3rdlargest centre in Scotland

  5. NHS Tayside • NHS Tayside is one of 14 health boards • Operates across 4 boundaries within an area of 3000 square miles – Dundee City, Angus, NE Fife and Perth & Kinross • Combined population of 416,090 • Tayside has 50 patients living with MND

  6. Challenges • MND remains clinical diagnosis • Diagnostic delay for MND about 1 year • Lack of evidence base • Carer burden • Lack of resources • Patient Forums

  7. Management • Emphasis on symptomatic & supportive interventions • Urgency due to rapid progression & unpredictable clinical course of disease • Co-ordinated multi-disciplinary approach • Patient Centred approach

  8. NICE Guidelines 2016 • Organisation of Care • Communication • Respiratory • Nutrition • Sialorrhoea • Cognitive Assessment • Planning End of Life

  9. Organisation of Care • Nurse led • Monthly Consultant OPC • Monthly virtual MND Clinic • Multiple functional problems • Symptom Management • MDT – Shared Care Approach • Key worker • Short term solutions whilst working on longer term strategies

  10. Consultant Neurologist Speech & Language Therapy GP & DNS Dietician Physiotherapy Specialist Nurse & Patient Occupational Therapy MND Scotland Palliative Services Neurology ward Social Work Home Ventilation Team

  11. Planning End of Life Care • Early introduction ACP • Early introduction to Specialist Palliative Care Services • Considerable psychological & emotional distress • MND characterised by series of losses and adjustments • Accompanying issues of grief and bereavement • Neuropsychology input at diagnosis

  12. Service development Integration with specialist palliative care services • Angus MND MDT Clinic • Daycare • Symptom Control Clinics • Community engagement activities • Audit and pathway development • Developing National nursing care standards

  13. Audits • CARE MND Platform • Gastrostomy insertion & survival • Cognitive Assessment in MND • Unexplained admissions in MND • Riluzole prescription in MND • National Audit Respiratory monitoring in Scotland

  14. Current research • Scotland collaboration • CARE MND • Regenerative Neurology Tissue Bank • Speak Unique • MND Brainbank • GTAC UK MND Network studies • Pro-SEC • Post-Gas

  15. Patient feedback Visiting at home, you can see the reality of what we are living with.... Reassuring that we have a dedicated nurse who knows everything about us and everything about MND Thank you for helping my husband to live ….. Having some-one with knowledge and expertise is invaluable and helps so much. We don’t know what we would have done without you......

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