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MND Association

Support for carers who look after those with motor neurone disease (MND) is an important part of what we do at the MND Association and we are proud to be playing a role in Carers Week 2019.

In our most recent survey of carers and people living with MND we gathered information on what it is like to care for someone with MND. We found that more than half of unpaid carers spend over fifty hours a week caring for a person with MND. This is more hours than an average full-time employee, so clearly the challenges of caring for someone with MND cannot be underestimated.

Perhaps more alarmingly, in the same survey, almost half of carers of people with MND do not receive any benefits or allowances, and fewer than a third of unpaid carers have taken any planned breaks, even for as short a time as two hours.

Steve Bell, Deputy Director of Care at the MND Association said:


"Through our communications with carers and the caring section of our website we try to raise awareness of rights, whether it is the right to a carers assessment or benefits and allowances. In addition, we seek to provide information and support for carers who are part of our MND family, as well as offering grants to carers to improve their quality of life.

Our regional conferences give the chance for those living with and affected by MND to come together and share their stories and our Branch and Group network means that people can connect with others in their local area and access support."

About MND


Motor neurone disease (MND) is a fatal, rapidly progressing neurological condition affecting up to 5,000 adults in the UK at any one time. The disease causes messages from nerves (motor neurones) in the brain and spinal cord that control movement to gradually stop reaching the muscles, leading them to weaken, stiffen and waste. The result is that people become locked in a failing body, unable to move, talk and eventually breathe.

Some may experience changes in thinking and behaviour, with a proportion experiencing a rare form of dementia. MND kills a third of people within a year and more than half within two years of diagnosis.

Today six people will be diagnosed and six will die from MND. There is no cure.

About the MND Association


The Motor Neurone Disease Association is the only national charity in England, Wales and Northern Ireland focused on MND care, research and campaigning.

We are a membership organisation with over 9,000 members forming a powerful national and local network that provides information and support alongside fighting for improved services.

We have over 7,000 active volunteers in England, Wales and Northern Ireland and around 190 paid staff, all dedicated to improving the lives of people affected by MND, now and in the future.


Our vision is a world free from MND.




Carers Week

Carers Week 2019 headline supporter:


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Carers Week is also supported by:






These organisations have joined together to make Carers Week happen in 2019:

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  • Carers UK new logo
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  • MSS-logo-orange partnersrow
  • RethinkMentalIllness MasterLogo-transparent
  • Sense-transparent logo


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