New report calling for better access to housing adaptations for people with MND

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People living with MND are becoming trapped in inaccessible homes due to a failure to deliver essential home adaptations, according to our new report.

Terminally ill people 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 report, Act to Adapt, surveyed 850 people, including those living with and affected by MND, health and social care professionals and Association volunteers.

The length of time, cost and lack of information and 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 there are 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:

“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.”

Act to Adapt 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.

These include: a commitment to ongoing central funding for Disabled Facilities Grants (DFGs); a review of the DFG means test; adoption by the UK government and national governments of Wales and Northern Ireland of the Equality and Human Rights Commission’s recommendation to require a proportion of all new housing to be built to accessible and adaptable standards; and a fast track, non-means tested process for adaptations under £5,000 to be implemented by all authorities responsible for DFGs.

Find out more: Read the full report

Find out more: Visit the Act to Adapt page

For further information and support contact our MND Connect helpline

mndconnect 0808 802 6262