Preseli Pembrokeshire AM Paul Davies 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 at a recent event held at the Senedd. MND kills five people every day, with half of people dying within 14 months of diagnosis. This terminal disease can affect any adult at any age and sadly, 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 launched in June 2012 aims to change this. The five-point MND 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.
Mr Davies 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."
John Prosser the Chair of the South West Wales branch of the MND Association and the event organiser said: "I am really pleased with the great turnout at the event. As a former carer for my wife who died of MND in 2009 after an 18 month battle with the disease, I believe the MND Charter is step in the right direction to ensure the right services, in the right place, at the right time. I believe that if we get it right for MND we can get it right for other neurological conditions."
The MND Association is the only national charity in England, Wales and Northern Ireland dedicated to supporting people living with MND and their carers. The recent event at the Senedd was a chance for AMs to meet people affected by MND, to hear individual experiences and to offer support for the MND Charter.
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"
The MND Charter, which has already received wide endorsements from leading medical institutions (including 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. For further information and to sign the MND Charter please visit www.mndassociation.org/mndcharter.