Tuesday, 4 September 2012

MEP signs Motor Neurones disease charter

MEP Nikki Sinclaire 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 in the UK, with half of people dying within 14 months of diagnosis. The 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.

The five-part 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 diseases.

Nikki Sinclaire says, "I am delighted to sign up to the MND Charter. I 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 the Royal College of General Practitioners (RCGPs) aims to ensure people with MND and their carers have access to timely and appropriate information, care, services that allow them to maximise their quality of life and ensure they are treated with dignity.

Farah Nazeer Director of External Affairs said "What matters most is that people with ND 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".

More information about the Motor Neurone Disease Association can be found on their website http://www.mndassociation.org/