MP Marcus Jones has 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 within 14 months of diagnosis. This terminal illness 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.
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.
Commenting, Marcus said: “I am pleased 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.”
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.”
The MND Charter, which has already received endorsements from leading medical institutions (including the Royal College of General Practitioners, Royal College of Nursing, Association of British Neurologists, Royal College of Speech & Language Therapists, Chartered Society of Physiotherapy, Help the Hospices and Rare Disease UK) aims to ensure people with MND and their carers have access to timely and appropriate information, care and services that allow them to maximise their quality of life and ensure they are treated with dignity.
Chris James, Director of External Affairs at the MND Association, 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.”