Motor neurone disease patients in England die waiting for home adaptations, campaigners say | Motor neurone disease

People with motor neuron disease (MND) are dying while waiting for grants to make their homes habitable due to a huge backlog in applications, campaigners have said.

MND found that it takes people in England on average 375 days to get essential adaptations to their homes through the government’s Disability Facilities Grant (DFG), due to increasing delays in the system.

But a third of people with MND die within a year of diagnosis, and about half within two years, meaning they spend the final months of their lives struggling to get help, and many of them die in unsanitary and unsuitable homes.

The charity’s chief executive, Tanya Curry, said: “For someone whose condition can progress dramatically in a matter of months, waiting a year or more for life-saving adaptations is tantamount to being denied those adaptations. »

Nicole Foster, 56, was diagnosed with MND in May and spent her entire life, and money raised on her behalf, replacing her bathroom with an accessible one after she was told she might 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 had a very responsible and hard-working job all my life and paid a lot of taxes, but when it comes to needing something in return, you just forget.

“I should have used my money to go on vacation and spend quality time with my family with the time I have left.”

Foster was also told she needed an elevator that went through the floor, but faced with another long wait, she ended up paying for a stair lift. “I can’t afford to spend £18,000 on a lift,” she said.

Foster said she had fallen at home several times, the main reason her husband gave up his job to care for her, and someone who came to assess her house said he was “embarrassed” that she wasn’t a priority.

“I can’t be left alone because I can’t get up and walk around safely. What does it take to be a priority? I can’t really walk and I’m not safe in 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 a ready-made care plan.”

Via Freedom of Information requests, MND found that the average time from submission of a DFG application to completion of work was 375 days in England, 357 days in Northern Ireland and 289 days in Wales.

Administered by local councils and funded by central government, the grants fund adaptations such as stair lifts, door widenings and ramps, which are essential for people with MND whose mobility can rapidly decline.

“The current timetable is simply unworkable and unacceptable and we need local authorities to commit to moving things forward much more quickly,” said Alex Massey, the association’s head of campaigns, policy and public affairs.

“If you let people wait more than a year for the work to actually be done, it’s going to leave them in very, very difficult situations where they’re effectively trapped in an unsafe and unsuitable home.”

Massey said people had to wash in their kitchen sink for months or sleep on their living room couch, due to delays in accessing funding.

The MND Association wants the government to introduce a formal fast-track procedure for people with the disease and other rapidly progressing conditions, as well as remove means testing for adaptations for people with these conditions.

“When someone is living with a terminal, often rapidly progressing illness like MND, it needs to be treated quickly. It needs to be prioritized. The request needs to be treated as urgent because these needs will only increase over time,” Massey said. “And the means test doesn’t take into account the fact that they will likely have to leave their job at some point.”

A spokesperson for the Ministry of Housing, Communities and Local Government said: “Waiting for disability facilities grant funding can have a devastating impact on people’s lives. This is why we expect local authorities to move forward as quickly as possible.

“We are taking action by investing £711 million in the grant to reduce waiting lists, fund thousands more home adaptations and ensure seriously ill people get the home adaptations they need.”