Motor Neurone Disease

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

5. 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

6. 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

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

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

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

10. 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

11. 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

12. 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

13. 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

14. 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

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

16. 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......