A dad whose body is wasting away from motor neurone disease is backing a new charter calling for an end to ignorance about the disease.
Ian Pratt, aged 43, had never heard of the terminal condition when he was diagnosed just over a year ago – but now he is calling for greater awareness of the illness.
Ian is backing a charter put together by the Motor Neurone Disease Association, which has been signed by more than 12,000 people so far.
He has signed the charter himself, while Sir Andrew Cash, chief executive of Sheffield Teaching Hospitals NHS Foundation Trust, has also added his name, along with city MND expert Prof Pamela Shaw.
Ian, from Barnsley, said: “I’d never even heard of motor neurone disease, so coming to terms with it is doubly hard.
“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.
“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.”
The charter sets out five key principles and priorities which ensure that patients with motor neurone disease receive a high standard of care.
These include the right to be given an early diagnosis and high-quality treatment, as well as being treated with respect and dignity.
Ian is being cared for at the Royal Hallamshire Hospital’s Sheffield Care and Research Centre for Motor Neurone Disorders.
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What is Motor Neurone disease?
* Motor neurone disease can strike anyone at any time, and leaves sufferers unable to move, walk and talk, until they eventually lose the capability to breathe
* The devastating symptoms are caused by damage to cells that control movement, and about half of patients die within 14 months
* More than 6,000 people in the UK are affected by the disease
* Treatments are very limited – researchers in Sheffield are currently trialling a device called a diaphragm pacing system, which
strengthens the diaphragm muscles and aids breathing through the delivery of electronic pulses