Why are we campaigning?
Until there is a cure for MND, what matters most is that people with MND receive the right care, in the right place at the right time. This is the vision of our MND Charter.
The Champion The Charter campaign calls on councils to adopt the MND Charter to help positively influence the lives of people living with MND and their carers in their community.
Councils play a key role in delivering a number of the points within the MND Charter and our campaign will help ensure councils are better informed and understand the needs of people with MND.
We are encouraging supporters to speak to their local councillors about MND and ask them to encourage the council to adopt the MND Charter.
What is the MND Charter and why is it important?
The 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 this campaign matters
Heather Smith lives in Swindon, Wiltshire and became a Campaigns Volunteer for the Association in 2013 following the death of her partner, Steve, who had MND.
“It was so satisfying to know that we have made a real difference to the council’s level of knowledge about MND and that they have made a clear public commitment to people living with the disease, their families and carers.”Heather Smith
Colin Hardy is from Northumberland and joined the Association as a volunteer Campaigns Volunteer in 2014 following the death of his sister Pauline, who had MND.
“I first approached Berwick-upon-Tweed Town Council in 2014 and asked them to support and adopt the MND Charter. Asking councils to adopt the Charter was so important to me, not only as a way to raise awareness of MND, but also to highlight the issues and difficulties that people living with MND in Berwick were facing.”Colin Hardy
What is the aim of the MND Charter?
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 the campaign 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.