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Motor Neurone Disease

June 29, 2017 10:52 AM

Motor neurone disease (MND) is a rapidly progressing neurological condition for which there is no cure. MND leaves people locked into a failing body, unable to walk, talk, swallow, use their hands and eventually breathe. It kills a third of people within 12 months of diagnosis and half within two years.

People living with MND need access to the right care, in the right place, at the right time to enable them to live as full a life as possible in the time they have left. However, many are not receiving the care they need, when they need it.

The MND Charter adopted by Newcastle City Council on 28th June 2017 aims to help change this. The Charter sets out what good care looks like for people with MND and their families - getting the right care, in the right place, at the right time.

The MND Charter consists of 5 points:

1. The right to an early diagnosis and information

2. The right to access quality care and treatments

3. The right to be treated as individuals and with dignity and respect

4. The right to maximise their quality of life

5. Carers of people with MND have the right to be valued, respected, listened to and well-supported.

Councillor Jackie Slesenger said : "Some years ago, I hosted a charity coffee morning at the Mansion House on behalf of the then Lord Mayor in aid of the Motor Neurone Disease Association and was brought face to face with the distressing plight of those suffering from this disease as well as their carers whose responsibilities were in some cases overwhelming and never ending.

"A considerable amount of money was raised that day. That Association is the only national charity in England, Wales and Northern Ireland dedicated to improve care and support for people affected with MND. It receives no Government support. It funds and promotes research and raises awareness so the needs of the sufferers are addressed by society.

"The only way to beat MND for which to date there is no cure is to raise money to fund researchers and research and this the Association continues to do.

"MND has a high profile. The best known case is that of Professor Stephen Hawkins (pictured above) whose amazing longevity,supported by brilliant technology has enabled him to continue contributing to our knowledge and understanding of the Universe. There are many others who despite the ravages of their illness continue to live a normal a life as possible. For example people like Cath Muir who despite struggling to walk has cycled 150 miles to raise funds for The MND Association and she and her family have raised over £25,000 between them.

"In recent years we have witnessed a steady stream of sufferers alongside their devoted carers applying to the Courts for the right to die with dignity and end their life in the way they wish.
"They believe that people with MND deserve a compassionate law that respects individual choice and allows people to take back control from an illness that has robbed them of so much. It is now for Parliament to decide how best to help those whose lives have been fatally blighted.
"Since its inception in 2102 the MND Charter has raised awareness throughout the country and globally. Thousands of individuals and organisations such as Councils have signed up to its aims. The adoption of this Charter by Newcastle City Council will be the first step in forming partnerships and raising awareness for sufferers and their carers and will hopefully achieve better outcomes for those living with this most terrible of diseases."

Councillor Robin Ashby said : "While the prognosis may be for a short life, this isn't inevitable, as the exceptions prove. Hope is as important an ingredient as medicines, care and advanced research, such as that being carried at at Newcastle University's internationally recognised Institute of Neuroscience. There, trials have already shown improved quality of life and increased survival for some participants.

"Newcastle Council plays a key role in delivering a number of services people with MND and their carers rely on - services like social care, housing, housing adaptations and carers services, despite the funding squeeze.

"By adopting the MND Charter we can help those working for, and with, the council, better understand the needs of people with MND and their carers, and increase their confidence in providing services that meet those needs.

"MND is complex disease and challenging to manage, but if councils get it right for MND, they can get it right for people with other neurological conditions and disabilities too.

"By adopting the MND Charter during Awareness Week, Newcastle City Council can make a positive difference to the people living with this devastating disease in our community."