Justin Tomlinson MP has today signed the Motor Neurone Disease (MND) Association’s Charter in recognition of the rights and priorities of people living with MND and their carers.
MND kills five people every day, with half of people dying with 14 months of diagnosis. This terminal disease can affect any adult at any age. There is no known cure.
Unfortunately, this condition is still little understood and this contributes to many people with MND not receiving the care and support they need. The MND Charter has been launched with the aim to change this.
Justin Tomlinson MP said “I am delighted to sign up to the MND Charter. I have seen the difference good services make to the lives of people with MND and believe everyone with this devastating disease should be supported to maximise their quality of life and die with dignity”.
The five-point charter sets out what good care looks like for people with MND and their carers and is designed to raise awareness and understanding of this devastating disease.
The MND Charter aims to ensure that:
1. People with MND have the right to an early diagnosis and information.
2. People with MND have the right to access quality care and treatments.
3. People with MND have the right to be treated as individuals and with dignity and respect.
4. People with MND have the right to maximise their quality of life.
5. Carers of people with MND have the right to be valued, respected, listened to and well supported.
Liam Dwyer, a person living with MND and fronting this year’s MND awareness campaign said: “Many people with MND die without having the right care, not having a suitable wheelchair, not having the support to communicate. When living with MND, one month waiting for an assessment or a piece of equipment is like a year in most people's lives, especially as half of the people with MND, die within 14 months of diagnosis.”
Farah Nazeer Director of External Affairs said “What matters most is that people with MND and their carers can access the right care, in the right place and at the right time. We need to ensure that the needs of people with MND and the priorities for good care as set out in our charter are recognised and respected. We urge everyone to sign the charter to show their support”
For further information please visit www.mndassociation.org/mndcharter