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20 September 2013

Call for greater awareness of debilitating disease


A YOUNG father whose body is wasting away from motor neurone disease, a fatal illness which can strike anyone at any time, is backing a new charter calling for an end to ignorance about the disease.

Ian Pratt, 43, of Barnsley had never heard of motor neurone disease when he was diagnosed with the terminal illness just over a year ago.

Now he is calling for greater awareness of the disease – which leaves sufferers unable to move, walk, talk and eventually breathe.

Motor neurone disease destroys the cells that control movement, resulting in progressive disability.

Treatments are very limited, with most patients only expected to live two to five years after diagnosis. Around half will die within 14 months.

The charter has been put together by the Motor Neurone Disease Association and has been signed by over 12,000 people to date, including motor neurone disease sufferer Ian Pratt and Sir Andrew Cash, chief executive of Sheffield Teaching Hospitals NHS Foundation Trust.

More than 6,000 people in the UK are affected by the disease.
Ian Pratt said: “I was diagnosed with motor neurone disease last September. I’d never even heard of it, so coming to terms with the disease is doubly hard as I have to explain what is, what it is going to do you and the speed at which it can take hold.

“I can still move at the moment, but my body is wasting away. I’ve lost over 5 stone since being diagnosed and its 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 and more people aware of the disease and what it can do to you. This can only be a good thing.”

The charter sets out five key principles and priorities which will ensure patients with motor neurone disease are treated with respect and dignity. These are: the right to early diagnosis and information, the right to high quality care and treatment, the right to be treated with dignity and respect, the right to maximising the quality of life and support for carers.

Ian Pratt is being cared for by the Royal Hallamshire Hospital’s Sheffield Care and Research Centre for Motor Neurone Disorders.

Chief executive Sir Andrew Cash has joined health colleagues from across the region to pledge support to the commitments set out in the Charter.

He said: “Motor neurone disease is a truly awful disease, so I’m honoured to be pledging our support to this important Charter.

"Through research we hope to make life more comfortable for patients. In Sheffield we are very fortunate to have Professor Pamela Shaw, who has brought together a world-class research centre giving new hope to sufferers and spearheading new treatments to patients in Sheffield and beyond.”

The £18m Sheffield Institute for Translational Neuroscience centre brings together 150 international clinicians and scientists working together to fight the disease. It is led by Professor Pamela Shaw, a consultant neurologist at Sheffield Teaching Hospitals NHS Foundation Trust.

The centre – which is the only one of its kind in Europe – is currently trialling a revolutionary device called a diaphragm pacing system which could prolong patients’ lives. The device strengthens the muscles and aids breathing through the delivery of electric pulses which are sent to the diaphragm – one of the key controlling muscles of the chest.

Professor Pamela Shaw said: “This important charter promotes the best possible standards of care and support for MND patients and their families while we are awaiting the results of scientific endeavour to slow or halt the progression of symptoms. I am delighted that so many people including Sir Andrew Cash as CEO of our hospital Trust have lent their support to the charter.”

Researchers from the centre have also contributed to the development of a new ‘Head Up’ contour-shaped neck collar which is to be tested later this year. The device, which is being supported by the National Insitute for Healthcare Research Devices for Dignity Healthcare Co-operative, could make life more comfortable for patients when experiencing difficulties in eating and talking.

“People like Professor Pamela Shaw offer a glimmer of hope to sufferers, and both the charter and the research are important pieces of the puzzle we are all trying to put together to fight the disease,” Ian added.

To read a copy of the charter click here. If you are interested in getting involved in any motor neurone disease research projects run by Sheffield Teaching Hospitals NHS Foundation Trust email getinvolved@sth.nhs.uk.

ENDS

MEDIA CONTACT:
Claudia Blake, Research and Innovation Communications Officer
Tel: 0114 226 5033
Email: claudia.blake@sth.nhs.uk

 



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