As the motor neurone disease (MND) community in England continues to face a distressing reality, campaigners are sounding the alarm on the devastating impact of lengthy delays in securing essential home adaptations. The MND Association’s recent findings reveal a troubling statistic – it takes an average of 375 days for people in England to obtain the necessary government grants for crucial home modifications through the Disabled Facilities Grant (DFG) scheme.
This alarming timeline poses a significant challenge for MND patients, as a third of them succumb to the disease within a year of diagnosis, and about half within two years. Tanya Curry, the chief executive of the MND Association, emphasises the gravity of the situation, stating, “For someone whose condition may progress dramatically in a matter of months, waiting a year or more for vital adaptations is equivalent to being denied them altogether.”
Nicole Foster, 56, was diagnosed with MND in May and has had to dip into her life savings to replace her bathroom with an accessible one, as she was told she faced a two to three-year wait for DFG funding. “I said I can’t wait that long, I’ll be dead in two to three years,” she recounts. Foster has also been informed that she needs a through-floor lift, but the lengthy waiting period has forced her to pay for a stairlift instead, a financial burden she can ill afford.
The MND Association’s findings, obtained through freedom of information requests, paint an even bleaker picture across the UK. The average time from submitting a DFG application to the completion of the necessary work was 375 days in England, 357 days in Northern Ireland, and 289 days in Wales.
Alex Massey, the head of campaigning, policy, and public affairs at the charity, emphasises the dire consequences of these delays, stating, “If you leave people waiting over a year to get the actual work done, that is going to leave people in very, very difficult situations where they’re effectively trapped in an unsafe and unsuitable home.”
The MND Association is calling for the government to introduce a formal fast-track process for people with rapidly progressive conditions like MND, as well as waive the means test for adaptations, recognising the financial strain these patients and their families face.
As the clock ticks, the MND community in England continues to fight a battle against time, desperately seeking the necessary support to adapt their homes and maintain their dignity and independence in the face of this devastating disease.