Demos has been undertaking research into the hidden costs associated with a motor neurone disease (MND) diagnosis for both individuals, their families and carers. While MND has an enormous impact on a person’s health, but it can also have a financial burden too. Medical and care costs, expensive equipment and home adaptations, along with less obvious costs including foregone income and issues with insurance and pensions, can quickly add up.

This report captures the voices of hundreds of people living with the disease across England, Wales and Northern Ireland. Some of the key findings include:

  • On average, people with MND and their families spend the equivalent of £9,645 every year in regular and enhanced costs, as a direct result of the disease, plus a further £2,175 in one-off costs
  • Over two-thirds of families use their savings to cope with the extra costs of MND during the illness, and sometimes little is left after bereavement
  • 82 per cent of people living with MND have experienced a negative financial impact following diagnosis, and only one in five consider the financial support they receive to be adequate

The full report, including policy recommendations, can be downloaded here.

This research has been undertaken in partnership with the Motor Neurone Disease Association.