What is MND?
Motor Neurone Disease is a fatal neurological illness with no known cause or cure. Symptoms can include progressive paralysis, loss of speech, and difficulty eating and drinking. MND affects people in many ways and has emotional and practical implications for families and carers. More than 160 people were diagnosed with the illness this year in Scotland and received the services of the Association.
About the Charity
The Association’s founder John MacLeod had MND. Together with his family and friends he launched the Scottish Motor Neurone Disease Association in 1981, organising provision of equipment. The following year the service of the first care specialist was introduced. The Association is now the only charity in Scotland offering care and information for the Scottish MND community and we are also a key source of funding for research to find a cause and cure for the illness.
Sustaining and Evolving Services
The Association reaches out to the MND community and health and social care professionals with well maintained services including our care team, specialist equipment, information, education, counselling and befriending. Fundraisers and donors generosity has helped maintain and develop core services such as information and care and allowed increased spending on research. Campaigning has raised awareness of the Association’s services and the needs of people with MND amongst Scottish Health Boards, government and the general public in Scotland.
A Personal Approach to Care
The Scottish Motor Neurone Disease Association funds a care service with 6 care specialists based in hospitals in Glasgow, Edinburgh, Dundee and Aberdeen. This year they have provided support for a total of 433 people with MND at home throughout Scotland. Their expert clinical experience proves essential when providing advice and information. They liaise continuously with health and social care professionals to ensure the best possible standards of care are continuously met. This year the Association received part funding for this service from 4 of the 14 Scottish Health Boards, and will continue campaigning to secure 50% funding from all Scottish Health Boards.
Best Quality of Life
The Association has strived to maintain the best quality of life for people with MND since 1981. They continue to invest heavily in the Specialist Equipment Centre with items including electronic communication devices for people with speech difficulties and specialist furniture and mobility equipment. They have delivered 116 pieces of equipment on loan across Scotland to cover gaps existing within health and social service equipment provision. The equipment delivery van has travelled over 10,000 miles this year to homes around Scotland with the help of volunteer drivers. Also, the Small Grants Scheme has also given people with MND almost £8,000 for additional expenses arising as a result their illness.
Addressing Emotional Issues
The counselling service provides specialist training for volunteers to help people with MND, family members, carers and people bereaved by the illness. There are 16 volunteer counsellors who served over 100 clients throughout Scotland during the year. Clients have used the service through self referral or referral by the Care Team and health and social care professionals. A pilot Befriending Service in Fife and Tayside also exists to relieve pressure on carers and improve the independence of people with MND. There are monthly meetings for carers at centres offering complementary therapies and group activities.
Meeting the Needs of Families
Improved knowledge about MND for families and health and social care professionals has been accomplished using an Education Service funded by the Scottish Executive. Family members and carers have expressed a wish to learn more about the illness, ways to access support, and time to share their experiences with others. Family Information Evenings are now regular events.
Funding New MND Researchers
The Association has allocated £600,000 for research via a programme of PhD Studentships over the next 5 years. The programme aims to stimulate high quality research into MND in Scottish institutions. Funding for the first PhD Studentship was granted in 2007 to allow successful completion of the student’s PhD at Edinburgh University over the next three years. The research project will measure the effects of exercise on the rate of degeneration of neuromuscular connections. Studies will also be carried out to ascertain whether exercise improves the ability of relatively healthy motor neurones to compensate as MND progresses.
Continuing Research Commitments
Two projects are ongoing due to £90,000 in funding from the Association. Both are being carried out at the centre for Neuroscientific Research at Edinburgh University led by two respected scientists in their field. The first began in 2005 using fruit fly genetics as a tool for identifying new therapies for MND. The other began in 2006 and is investigating the mechanisms of cell pathology in an inherited form of MND. |