Terminally ill father in fight to end ignorance

Ian Pratt, from Barnsley, had never heard of the terminal illness until he was diagnosed just over a year ago.

The 43-year-old is one of 12,000 people who have signed a charter put together by the Motor Neurone Disease Association in a bid to raise awareness of the degenerative condition, which will gradually rob him of the ability to move, talk and eventually breathe.

Patients are only expected to live two to five years after diagnosis. Around half die within 14 months.

Mr Pratt said having to learn what the condition was, what it would do to him and the speed at which it would take hold had made coming to terms with his diagnosis “doubly hard”.

He said: “I can still move at the moment, but my body is wasting away. I’ve lost over five stone since being diagnosed and it’s starting to affect my confidence now.

“I can’t go out anywhere in public without assistance. I still enjoying playing with my two-year-old, but getting off the ground is becoming difficult; it’s just another added complexity of the disease.

“There won’t be a cure in my lifetime, so this charter will make more people aware of the disease and what it can do to you. This can only be a good thing.”

Sheffield Teaching Hospitals NHS Foundation Trust chief executive Sir Andrew Cash and consultant neurologist Professor Pamela Shaw, of the Sheffield Institute for Translational Neuroscience centre, have also signed the charter, which sets out rights such as early diagnosis and information, quality care, dignity, quality of life and support for carers.