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Study finds motor neurone disease costs families £12K a year

Author: Leila Hawkins
22 June 2017

People with motor neurone disease (MND) are struggling to cope with the cost of the condition, which a new study puts at £12K a year.

The study was commissioned by the MND Association to research the costs of living with MND and the ongoing financial impact on families post-bereavement. 

Think tank Demos surveyed 331 people living with MND, 441 bereaved carers, and conducted 10 month-long diary-led interviews with people living with MND.

The survey found that on average people with MND and their families spend the equivalent of almost £12k a year including costs that arise as a direct result of the disease as well as one-off purchases.  The expenditure is even higher for those living with children and those of working age.

The Demos research identified that people living with MND are forced to incur three main types of additional costs as a result of their illness. These are one-off costs like housing adaptations, and adapting or buying a vehicle; regular costs such as help with care and cleaning; and common expenses like energy bills that are higher because of the condition.

The study also found that disability benefits do not cover the extra costs that living with MND incurs. Personal Independence Payment (PIP), the benefit to cover the additional costs of disability, at its maximum entitlement is £7337.20 per year. As a result people struggle to get the necessary support, and over two-thirds of families use their savings, meaning sometimes little is left on bereavement.

The research also estimates that nearly a quarter of people living with MND are not receiving the disability benefits that they are entitled to.

Chris James, from the MND Association said:

“Motor neurone disease is devastating and this report underlines the extra hardship people face financially too. It clearly demonstrates the significant spend required to try and maintain quality of life; from home adaptations and care to trying to maintain independence through specialised wheelchairs and vehicles.”

“I would like to thank all those people affected who shared sometimes harrowing stories. The gap between the benefits entitlement and the actual cost of living with MND is stark. These stories and the data gathered will help our continued efforts to campaign for the right care and support at the right time.”

“When facing terminal illness no one should have sleepless nights worried about how they are going to pay for their own funeral or that they will be leaving their family without a home. We have released this report in June – our annual MND Awareness Month and hope that sharing these shocking statistics will help more people realise the wider impact of MND.”

To read the full report visit The financial impact of motor neurone disease

See more articles in Research

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