MND Association. Norfolk, Norwich and Waveney Branch


The Volunteering Fund Project



Following a detailed application process to the Department of Health Volunteering Fund the MND Association was awarded over £500,000 of funding to support work on improvements in services for people living with MND in the East of England region.


As part of this project new volunteers known as Care Services Navigators (CSN) are working directly with people affected by MND to further empower them to become involved in care decisions and service design to ensure their specialist and complex needs are met.


This is quite a different role to that of our Association Visitor (AV) as the CSN will only be involved with a person with MND and their carer long enough to ensure they can find their way through the health and social care system and will refer for ongoing AV support where available for more long term support and information.


Where we were last year (Oct. 2013)
Where we are now (Oct.2014)

3 Care Service Navigators

7 Care Service Navigators

21 people with MND supported

79 people with MND supported

226 hours volunteered

840 hours volunteered

3666 miles covered

13948 miles covered


By using technology more effectively the project will create new ways of providing accessible information to people affected by MND through an interactive, web-based portal. The portal is based on the ‘Living with MND guide’ produced by the Association and provides a wealth of information on health and social care services in Peterborough, Cambridgeshire, Norfolk, Suffolk and West Essex.


To ensure that the content remains up to date six new volunteers have been recruited specifically to:

  • Gather information
  • Test the web portal links
  • Report issues

PortalThe web-based portal was launched on Sunday 19 October at the Norwich and Waveney open meeting and can be accessed at


Your feedback is extremely important as this will enable us to develop the portal further so please share your thoughts good or bad with Melanie Smith, Forum & Support Site Coordinator at


If you would like any more information on the project please contact Pauline Matheson