Have your say

Responsive is a new initiative designed to ensure that the Association is consistently able to provide access to the best possible care and support to people with and affected by MND and Kennedy's disease. Its main focus is to look at the regional staff roles generally and specifically those within care, campaigns and volunteering to ensure that they meet the needs of people with and affected by MND, volunteers and Health and Social Care Professionals and we can make the best use of limited resources.

In the first instance we will be working with staff, volunteers, people with and affected by MND and Kennedy's disease and other stakeholders to gather views on the tasks and responsibilities that should be undertaken, those that should not and what our priorities should be. As a starting point we have mapped a number of customer journeys.

We would now like to test our thinking before moving on to the next stage and would be grateful if you could look at one or more of the journeys and let us have your comments on it. In particular we would like to know if in your view:

  • It makes sense generally
  • There is anything else that should be included
  • There is anything included that should not be there

Documenting the different journeys has been challenging and to make them manageable they have been set out both in outline and in more detailed forms. Looking at the outline form will give you a good general idea but the more detailed form may be needed to bring the outline alive.

Comments, thoughts and ideas should be sent to

Living with MND?

We have created a short survey in respect of the journey of people with and people affected by MND for those of you who prefer to start with a blank piece of paper. It maps the customer journey stages but provides free text boxes for you to enter your own ideas.

If there is anything that you would like to discuss in more detail please do call the project manager, John Gillies-Wilkes on 07553 374 392.

For further information and support contact our MND Connect helpline

mndconnect 0808 802 6262