- 3 updates
There are calls tonight to improve the care of people with Motor Neurone Disease.
The condition kills a third of people who have it within a year.
Very little is known about the muscle wasting condition but a major research project has started in Liverpool, at the Walton Centre for Neurology.
It's focussing on the quality of life for patients.
What is known is that it robs people of their ability to perform basic functions like eating and walking, although the mind is still alert.
MPs are debating the issue in the House of Commons this evening and patients have been speaking about their experiences to Sarah Rogers.
Researchers in Liverpool are hoping a study into motor neurone disease will dramatically improve the lives of those with the illness.
MND is a degenerative disease that attacks specialist nerve cells in the brain and spinal cord leading to weakness and wasting of muscles. A third of people with the illness will die within a year.
Prof Carolyn Young from The Walton Centre is leading the study which is the largest of it's kind in the world focusing on the quality of life of patients. It's hoped it could improve care in the future:
Find out more about the study and how to take part here.
There are calls for more to be done to improve the lives of people with motor neurone disease. The devastating muscle wasting condition will kill a third of those who have it within a year.
Granada spoke to John Boulton from Sale who told us equipment can take too long to reach those who desperately need it. The 77 year old can no longer use his voice but told us his story through a computer.
To combat the problem the MND association have devised a charter they want councils to sign up to as a commitment to better care for those with the condition. They say it's very much a collaborative process with local authorities and understand financial pressures on health and social care budgets.
But so far in the North West only around 20% of councils have signed up. Chris James the director of external affairs at the the MND association told Granada the difficulty with the illness is that it's rare and "doesn't get the attention some other conditions have locally."
Read more about the charter and how you can get involved here.