MND Association of England, Wales and N Ireland

• In contact with approx 3,200 people with ALS/MND at any one time
• MND Connect Inforamtion for people with ALS/MND and their carers
• Advice and information for health & social care professionals and people affected by ALS/MND
• Leaflets and publications on ALS/MND
• Network of Regional Care Advisers supporting families with ALS/MND to ensure they receive the best possible care
• Equipment Loan
• Financial Support, where possible and when statutory services cannot help
• Established a national network of 19 MND Care Centres.  These:
  • provide coordinated integrated care
  • act as a tertiary Centre
  • provide educational opportunities and disseminate good practice
  • may run clinical drug trials, and/or carry out research
• Branches providing support and raising funds
• Network of Association Visitors offering understanding & befriending support to families affected by the disease
• Developed award winning training programme for Association Visitors
• Educational programme for health and social care professionals, people living with ALS/MND, carers and members of the Association
• Guidelines on the clinical management of ALS/MND.  Current modules include:
  • Time to, and telling the diagnosis
  • Nutritional management
  • Respiratory management
• Devised and promoting implementation of Standards of Care
• Standards of Care audit tool developed for health and social care professionals
• Data collation on experiences of people living with ALS/MND and carers (alternate years to ascertain their ability to access the recommended standards of care and quality of support via the Association)
• Research funding for aspects of pure and applied research; approximately 45 research grants at any one time
• Devised and currently implementing Care and Influencing strategy
• Annual ALS/MND week, to raise awareness of the disease and raise the profile of Branches by hosting co-ordinated local events

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