People with terminal illness ‘trapped in homes’, charity report finds

The Motor Neurone Disease Association has launched a new report highlighting the challenges facing terminally ill people when adapting their homes to suit their needs.

The charity surveyed 850 people, including those living with motor neurone disease (MND), carers, health and social care professionals and the charity’s own volunteers for the report, Act to Adapt.

It found terminally ill people are becoming trapped in inaccessible homes due to a failure to deliver essential home adaptations. Some are living for months, and in some cases dying, before even the most basic adaptations can be made to their homes to meet their changing needs.

The length of time, cost and lack of support were highlighted as the top three challenges people faced when trying to organise adaptations, such as hoists, ramps and wet rooms, to enable them to live with dignity and comfort in their home environment during their final weeks and months.

The report found significant differences in the services provided by authorities across England, Wales and Northern Ireland, with varying levels of funding available and no nationally agreed response timescale, creating a postcode lottery.

The cost of adaptations was a ‘major barrier’ for 96% of respondents to the survey with 39% also saying the lack of financial help has been one of their biggest issues.

Alex Massey, Policy Manager at the MND Association said:

“Very simply the cost, lack of funding and timescales involved are causing people with MND, their families and thousands of others with terminal illnesses real hardship at what is already a difficult time. MND is a progressive condition – a third of people die within a year of diagnosis and half within two years. People living with MND don’t have the luxury of time to wait.

“While compiling the report we heard stories of builders turning up to start adapting homes on the day the person with MND died. It’s just not good enough.”

The report calls for a range of measures to ensure steps are taken at both national and local levels to ensure ‘housing matters’ for people with MND and other terminal illnesses.

  • A fast track, non-means tested process for adaptations under £5,000 to be implemented by all authorities responsible for DFGs
  • Discretionary support to be made available in certain circumstances, for example for people with a terminal illness
  • A sharing of good practice in the provision of advice, support and information to people with progressive conditions.

Following the publication of the report, the charity will be working with its staff and volunteers to engage with local authorities responsible for housing to share and adopt best practice and, at a national level, to review the means test and commit to ongoing central funding for DFGs.

To read more about Act to Adapt visit