What is the MND Charter and why is it important?
The motor neurone disease (MND) Charter is a statement of the respect, care and support that people living with MND and their carers deserve and should expect.
The five points of the Charter are:
- The right to an early diagnosis and information
- The right to access quality care and treatments
- The right to be treated as individuals and with dignity and respect
- The right to maximise their quality of life
- Carers of people with MND have the right to be valued, respected, listened to and well-supported.
Why do we need it?
People with MND and their carers commonly experience having to explain what MND is and what their needs are. This lack of knowledge and understanding, particularly amongst decision makers and health and social care professionals, can lead to people with MND experiencing problems accessing services that are responsive to their needs.
The Charter was created to help raise awareness and campaign to improve services for people with MND and their carers at the local level.
What is its aim?
To make sure everyone understands and respects the rights of people with MND and their carers so they are given the very best opportunity to access the care they need to live the highest quality of life possible, and achieve dignity in death.
Ultimately, it aims to support work towards achieving the vision of the right care, in the right place, at the right time for people with MND and their carers.
What has it achieved?
The Charter has helped raise awareness of MND and 33,630 individuals and organisations have signed up to the Charter.
It has led to work with health and social care professionals, national and local politicians and organisations, including councils, to improve services for people with MND and their carers.
Why should councils adopt the Charter and what will it achieve?
We want to build on the Charter’s success and continue to use it at the local level to raise awareness and create change for those living with MND.
We will do this through our campaign Champion the Charter urging councils to adopt the MND Charter.
For a full list of our campaign materials click the link below:
Many decisions about services used by people with MND, such as social care, housing adaptations and support for carers, are made at the local level by councillors.
There are significant differences in the quality of services available to people with MND locally, depending on where they happen to live.
As such, it is important that councillors, and all those working for and with the council, understand the needs of people with MND and their carers.
What will it achieve?
By forming partnerships, we will help councils to raise awareness internally and, ultimately, achieve better outcomes for people living with the disease.
Our aim is that every time a councillor makes a decision, they think about the impact on people living with MND and their carers in the community.
As the focus of this campaign is local, the specific outcomes will depend on the area, and what change is needed.
We expect that the adoption of the Charter will be the first step in a lasting relationship with councils, where we work together to ensure people with MND get the right care, in the right place, at the right time.