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Published December 24, 2025
England’s disabled facilities grant (DFG) system is failing people with motor neurone disease (MND), leaving many to die in unsafe homes while waiting over a year for essential adaptations, according to campaigners.That’s the stark reality for a population facing a rapidly progressing, terminal illness.
Delays Mean a Race Against Time for MND Patients
A year-long wait for home modifications can be a death sentence for those with MND, as a third die within one year of diagnosis.
- The average wait time for DFG approval in England is 375 days.
- A third of people with MND die within a year of diagnosis, and half within two years.
- The MND Association is calling for a fast-track process and a waiver of means-testing for those with rapidly progressive conditions.
- £711 million has been invested to reduce waiting lists,but advocates say it’s not enough.
Q: What is the disabled facilities grant (DFG)?
A: DFGs are means-tested grants provided by local councils, funded by central government, to help disabled people pay for essential home adaptations like stairlifts, ramps, and door widening.
Nicole Foster, 56, diagnosed with MND in May, embodies this crisis. Facing a potential two-to-three-year wait for DFG funding to make her bathroom accessible, she spent her life savings-and money raised by friends-to complete the work herself.”I said I can’t wait that long, I’ll be dead in two to three years,” Foster explained. “All I got from the council was an extra handrail on the stairs.”
