Experiences and views of carers of people living with MND: findings of the MND Association Carers Survey 2015

Motor Neurone Disease Association
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Reports on the findings of a survey of carers of people living with Motor Neuron Disease (MND) in order to better understand what it's like to be a carer for people living with MND and to highlight carers' concerns. A questionnaire was sent to 1,544 people on the MND Association database and an online questionnaire was also posted on the MND Association website during March and April 2015. The report is based on questionnaires from 452 respondents, 336 received by post and 116 submitted online. Findings are discussed in the following areas: being a carer; support from health and social care services; MND Association services; and about you, which captured key demographic data about the respondents. Findings include: that over half of carers who responded spent more than 100 hours per week caring; 19% are not in work because of their caring role; almost two thirds of carers don’t receive any benefits or allowances; and more than a third of carers were unaware of their right to a Carer Assessment under the Care Act. The main concern carers had about their role was what would happen if they fall ill and about their ongoing ability to cope. A comparison of the results with MND National Carers’ Survey data published in 2013 is included. (Edited publisher abstract)

Subject terms:
carers, user views, motor neurone disease, access to services, social care provision, health care;
Content type:
United Kingdom

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