People with motor neurone disease in England are dying before receiving vital home adaptations, as severe delays in government-funded grants leave patients waiting months or even years for support, campaigners have warned.
The Motor Neurone Disease Association says people with the terminal illness are being failed by long backlogs in the Disabled Facilities Grant system, forcing many to spend their final months living in unsafe and unsuitable homes.
Long waits for essential adaptations
The MND Association found that people in England wait an average of 375 days for home adaptations to be completed through the Disabled Facilities Grant, which is administered by local councils and funded by central government.
The delays affect essential modifications such as stairlifts, ramps, widened doorways and accessible bathrooms, all of which are crucial for people whose mobility can deteriorate rapidly.
In Northern Ireland, the average wait was 357 days, while in Wales it stood at 289 days, according to freedom of information requests submitted by the charity.
Terminal patients dying while waiting
Around one in three people with motor neurone disease die within a year of diagnosis, and about half die within two years.
Campaigners say this means many patients are spending the final months of their lives fighting bureaucracy instead of receiving timely support.
Tanya Curry, chief executive of the MND Association, said waiting more than a year for adaptations is effectively the same as being denied them altogether for people with rapidly progressing conditions.
Patient forced to use life savings
Nicole Foster, 56, was diagnosed with motor neurone disease in May and was told she could face a two- to three-year wait for Disabled Facilities Grant funding.
Unable to wait, she used her entire life savings and money raised by friends and family to install an accessible bathroom.
She said the only immediate support offered by her council was an additional handrail on the stairs, despite her rapidly declining mobility.
“I can’t wait that long, I’ll be dead in two to three years,” she said. “I should have been spending my money on time with my family, not fighting for basic dignity.”
Safety risks at home
Foster was also advised that she needed a through-floor lift but, faced with further delays, paid for a stairlift instead.
She said she has fallen multiple times at home and can no longer be left alone safely, forcing her husband to give up work to care for her.
An assessor told her they were embarrassed she was not being treated as a priority case.
Campaigners say many people with MND are left washing in kitchen sinks or sleeping on sofas for months while waiting for adaptations.
Calls for fast-track system
Alex Massey, the MND Association’s head of campaigning and public affairs, said the current system is unworkable for people with terminal and rapidly progressive illnesses.
He said leaving people waiting more than a year for adaptations traps them in unsafe homes and places additional strain on families and carers.
The charity is calling for a formal fast-track process for people with MND and similar conditions, as well as the removal of means testing for adaptations.
Campaigners argue that means testing fails to account for the fact that many patients are forced to give up work as their condition progresses.
Government response
A spokesperson for the Ministry of Housing, Communities and Local Government said long waits for Disabled Facilities Grant funding can have a devastating impact on people’s lives.
The department said it expects councils to progress applications as quickly as possible and pointed to £711m of government investment aimed at cutting waiting lists and funding thousands of additional home adaptations.
Ministers said the funding is intended to ensure that seriously ill people receive the adaptations they need, though campaigners say urgent reform is still required.
Pressure on social care system
The warnings come amid wider pressures on adult social care and local authority funding, with councils struggling to meet rising demand and workforce shortages.
Health charities say without urgent changes, people with terminal illnesses will continue to face unnecessary hardship at the end of their lives.
