People with motor neurone disease (MND) are dying while waiting for grants to make their homes habitable due to a huge backlog of applications, campaigners say.
The MND Association found that people take an average of 375 days. England obtain necessary adaptations at home through the Government Disability Grant (DFG) due to increasing delays in the system.
But a third of people with MND die within a year of diagnosis, and around half die within two years, meaning they spend the last months of their lives struggling for support, with many dying in unsafe and unsuitable homes.
The charity's chief executive, Tanya Currie, said: “For someone whose condition can deteriorate rapidly within a few months, waiting a year or more for life-saving adaptations is tantamount to denying them altogether.”
Nicole Foster, 56, was diagnosed with MND in May and spent her entire savings, as well as money raised on her behalf, to replace her bathroom with an accessible one after being told she would have to wait two to three years for DFG funding.
“I said I can't wait that long, I'll be dead in two or three years. All I got from the council was an extra handrail on the stairs,” she said. “I've worked a very demanding and hard-working job all my life and paid a ton of taxes, but when it comes to the fact that I need to pay something back, they just forget about me.
“I should have spent the rest of my time vacationing and spending time with my family.”
Foster was also told she needed a through lift, but faced with another long wait, she had to pay for the lift. “There is no way I can afford to spend £18,000 on a lift,” she said.
Foster said she had fallen several times at home and was the main reason her husband quit his job to care for her, and someone who came to inspect her home said they were “embarrassed” that she wasn't a priority.
“I can't be left alone because I can't get up and get anywhere safely. Who do you have to be to be a priority? I can't walk and I'm not safe on the stair lift, but I still have to jump through hoops to get anything,” she said. “People with MND, none of us are going to get better. They need to have a care package ready.”
Through a freedom of information request, the MND Association found that the average time from DFG application to completion was 375 days in England, 357 days in Northern Ireland and 289 days in Wales.
The grants, administered by local councils and funded by central government, pay for adaptations such as stair lifts, door extensions and ramps needed by people with MND, whose mobility can quickly decline.
“The current timeline is completely unworkable and unacceptable and we need local authorities to commit to delivering results much faster,” said Alex Massey, the charity’s head of campaigns, policy and public affairs.
“If you make people wait over a year to get the actual work done, it will leave people in very, very difficult situations where they are effectively trapped in an unsafe and unsuitable home.”
Massey said people were forced to wash in the kitchen sink or sleep on the living room sofa for months due to delays in accessing funding.
The MND Association wants the government to introduce a formal fast-track process for people with the condition and other rapidly progressing conditions, and to scrap the means test to accommodate people with such conditions.
“When someone is living with an incurable, often rapidly progressing condition such as MND, they need to be followed up quickly. They need to prioritize. The application must be treated as urgent because these needs will only progress over time,” Massey said. “And the means test doesn’t take into account that at some point they may have to give up work.”
Ministry HousingA spokesman for Communities and Local Authorities said: “Waiting for grant funding for disability provision can have a devastating impact on people's lives, so we expect local authorities to progress as quickly as possible.
“We are taking action by investing £711 million in grants to reduce waiting lists, fund thousands of additional home accessories and ensure that seriously ill people get the home accessories they need.”
