Motor Neurone Disease (MND) attacks the nerve cells responsible for muscle control. While it can stop people doing everyday things like walking, talking and eating, it usually leaves the intellect unaffected. It is ultimately fatal within 2-5 years for the majority of people and at the moment there is no cure. Over 5,000 people in the UK live with MND.
How Volunteers Help
The MND Association (MND) covers England, Wales and Northern Ireland and has 95 volunteer-led Branches and Support Groups involving over 1,500 volunteers. The Branches help people living with MND and their families by fundraising to provide equipment and support that makes everyday life a bit easier.
The Association also has over 300 specially trained volunteer ‘Association Visitors’. Visitors provide friendship and support to people affected by MND from diagnosis to their eventual death. It is one of the most demanding volunteer roles that many people encounter.
What do Visitors Do?
People with MND tell the Association that they feel isolated and alone despite the fact they are often inundated by visits from a whole range of professionals. Association Visitors provide a listening ear to the person with MND and the carer and, working alongside the Association’s paid staff, they can act as advocates for them. As the name suggests they visit at home but often, in the early stages of the disease, will keep in touch by telephone or email.
Who makes a good Visitor?
Some Visitors have experience of MND either as a carer or through their work in health or social care. Many do not have this background but still make good Visitors because they have the key skills of being able to listen with sensitivity, appreciate the need for confidentiality and understand that because the disease usually progresses rapidly that time is of the essence for people with MND
Training
The Association provides a comprehensive training programme for Visitors. This includes an introductory day, a two-day residential, an eight-week period of experiential learning and a final follow-up day. Visitors who successfully complete the programme are then registered with the Association and must complete an annual update to maintain their registration. The training programme recently won the UK’s premier accolade for training and education, a National Training Award.
Visitors usually work in teams linked to the local Branch and are supported by Regional Care Advisers (RCAs). RCAs are paid staff who all have a background as health or social care professionals. In addition Visitors can access the national Care Information Service and Helpline for advice and support.
“You cannot quantify how fulfilling this role is. You get a lot of satisfaction from seeing little improvements in a person’s quality of life”. (C Glover, Retired Speech and language therapist).
For more information on volunteering with the MND Association see our website at www.mndassociation.org or send for an Information Pack on becoming an Association Visitor t
Motor Neurone Disease Association
PO Box 246
Northampton NN1 2PR
Telephone 01604611826
Email: ros.norris@mndassociation.org
