Preston City Council has pledged to do all it can to improve the quality of life of motor neurone disease (MND) sufferers.Advertisement
The local authority has become the latest of almost a hundred nationwide to adopt the Motor Neurone Disease Association’s MND charter, which compels councils to “positively influence” the lives of those struck with the terminal neurological condition.
There are currently 41 people living in Preston who have been diagnosed with the disease, which gradually causes muscles to weaken, stiffen and waste, affecting movement, speech and breathing.
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Bringing the notice of motion that committed the city to the charter, Brookfield ward councillor Mel Close stressed that MND “isn’t just something that can be put at the door of health and social care [services]”.
“What somebody with motor neurone disease also needs is speedy access to benefits [and] discussions about council tax, access to our leisure facilities and our parks, access to education, employment [and] accessible housing – and they need that quite quickly. They are all things that we deal with as a council.
“[In Preston, there are] 41 individuals, 41 families, 41 friends and work networks, all of whom are affected by it – so we’re not talking about a small number of people,” Cllr Close said.
She added that while public awareness of MND had recently been raised by the diagnosis and subsequent fundraising efforts of former rugby league star Rob Burrow, as well as a high-profile storyline in Coronation Street, councillors should take the time to find out more about the condition.
The meeting also heard that a former one of their number had fallen victim to the disease. Tony Reid, a deputy leader of the authority in the mid-1990s, passed away in 2008 after a three-year battle with MND.
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Cabinet member for community wealth building Valerie Wise – who was leader at the time Mr Reid had served as deputy – said that there was a need for politicians to better understand the “horrendous” condition, so that they can ensure they are “giving appropriate support to those suffering from it and also to their families”.
Among the points in the charter now adopted by the council are the recognition of the rights of MND patients to be treated as individuals and with dignity and respect – and to be able to maximise their quality of life.
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Ashton ward councillor Robert Boswell said the principles were the “very basic minimum that we can do”.
“[With MND], your body collapses, but your mind is still perfectly normal…which I think is a form of torture,” he added.
An average of six people are diagnosed with MND every day in the UK and there is a one in 300 chance of developing it over a lifetime.
Labour council leader Matthew Brown warned that everyone was “at risk”, while Conservative opposition group leader Sue Whittam recommended Rob Burrow’s book about his own experience of the disease, which she described as “absolutely heartbreaking”.
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