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Role Regional Care Development Advisor (RCDA)

Introduction – Anna Conlan. Role Regional Care Development Advisor (RCDA). Terminal disease Incidence: 2 per 100,000 Bradford and Airedale 28 cases Prevalence: 5000 people in UK. Motor Neurone Disease. Onset and progression is variable – can progress swiftly

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Role Regional Care Development Advisor (RCDA)

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  1. Introduction – Anna Conlan Role Regional Care Development Advisor (RCDA)

  2. Terminal disease Incidence: 2 per 100,000 Bradford and Airedale 28 cases Prevalence: 5000 people in UK Motor Neurone Disease

  3. Onset and progression is variable – can progress swiftly 90%-95% of people have the sporadic form Adult illness Motor Neurone Disease

  4. Amyotrophic Lateral Sclerosis (ALS) Most common 65% Progressive Bulbar Palsy (PBP) Affects 25% Progressive Muscular Atrophy (PMA) Affects 10% Motor Neurone Disease

  5. Muscle wasting & weakness Fasciculation (muscle twitching) Cramps Spasticity Pain Physio & OT Complimentary therapies Medication MND-Riluzole Antispasmodics - Quinine / Baclofen / Zanaflex / Diazepam (Restless leg-Ropinerole / Cabaser) Symptoms & Management

  6. Speech & swallowing Saliva & mucus problems Weight Loss Speech & language therapy Dietician Physio & OT PEG/RIG Medication Saliva control - Amitriptyline / Hyoscine / Buscopan / Robinul / Low dose beta blockers / Mucodyne Symptoms & Management

  7. Fatigue Emotional problems Counselling Alternative therapies Medication Anxiety - Benzodiazepines ie Diazepam / Lorazepam / Midazolam Antidepressants - including amytriptyline / nortriptyline Symptoms & Management

  8. Breathlessness Poor sleep Daytime Headaches Nocturnal Sweating Observation Physiotherapy Respiratory assessment Overnight pulse oximetrey Referral to respiratory consultant Clues to Respiratory Muscle Involvement in MND

  9. Senses Bowel & bladder function Sexual function Eye muscles Heart muscles Intellect Rarely Affected

  10. Manifestations Management issues Dementia Cognitive Impairment

  11. Tests may include blood tests, MRI, LP, EMG/NCS, myelogram, muscle biopsy Diagnosis

  12. Explain cause and management Refer to advice of S&LT Physiotherapy Management of secretion Review use of equipment Choking

  13. Breathing Space Kit

  14. Causes of MND?

  15. Multidisciplinary Approach

  16. Care Development

  17. What the Association Contributes

  18. Quality of life for people living with MND Standards of Care

  19. Anna Conlan, telephone: 0845 3751841 Website – www.mndassociation.org MND Connect 08457 626262 (lo-call rate) for all. mndconnect@mndassociation.org Leeds care centre 01133926078. Thank you for listening

  20. Together We Make A Difference

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