United Kingdom
Date founded: 1979
Region covered:
Date founded: 1979
Region covered:
England, Wales, Northern Ireland (the Isle of Man and Jersey - affiliated branches)
Address:
Francis Crick House
6 Summerhouse Road
Moulton Park
Northampton NN3 6BJ
England
MND Association of England, Wales and N Ireland Activities
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In contact with approx 3,200 people with ALS/MND at any one time
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MND Connect Inforamtion for people with ALS/MND and their carers
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Advice and information for health & social care professionals and people affected by ALS/MND
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Leaflets and publications on ALS/MND
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Network of Regional Care Advisers supporting families with ALS/MND to ensure they receive the best possible care
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Equipment Loan
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Financial Support, where possible and when statutory services cannot help
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Established a national network of 19 MND Care Centres. These:
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provide coordinated integrated care
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act as a tertiary Centre
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provide educational opportunities and disseminate good practice
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may run clinical drug trials, and/or carry out research
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Branches providing support and raising funds
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Network of Association Visitors offering understanding & befriending support to families affected by the disease
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Developed award winning training programme for Association Visitors
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Educational programme for health and social care professionals, people living with ALS/MND, carers and members of the Association
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Guidelines on the clinical management of ALS/MND. Current modules include:
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Time to, and telling the diagnosis
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Nutritional management
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Respiratory management
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Devised and promoting implementation of Standards of Care
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Standards of Care audit tool developed for health and social care professionals
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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)
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Research funding for aspects of pure and applied research; approximately 45 research grants at any one time
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Devised and currently implementing Care and Influencing strategy
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Annual ALS/MND week, to raise awareness of the disease and raise the profile of Branches by hosting co-ordinated local events
MND Association of England, Wales and N Ireland Branches/Chapters
88
Contacts
- Sally Light, Chief Executive
- Richard Coleman, Chair of Trustees
- Nick Goldup, Alliance Director