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

People with motor neurone disease (MND) are dying waiting for grants to make their homes fit to live in due to a huge backlogs in applications, campaigners have said.The MND Association has found it takes an average of 375 days for people in England to get essential home adaptations through the government’s disabled facilities grant (DFG) due to growing delays in the system.But a third of people with MND die within a year of diagnosis, and about half die within two years, meaning they are spending the last months of their lives fighting for support, with many dying in unsafe and unsuitable homes.The charity’s chief executive, Tanya Curry, said: “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 spent her entire life’s savings, as well as money fundraised on her behalf, replacing her bathroom with an accessible one after she was told she faced a two to three-year year wait for DFG funding.“I said I can’t wait that long, I’ll be dead in two to three years. All I got from the council was an extra handrail on the stairs,” she said. “I’ve had a really responsible, hardworking job all my life and paid loads of tax, but when it comes to me needing anything back you just get forgotten about.“I should have been using my money to go on holiday and spend quality time with my family with the time I have left.”Foster has also been told she needs a through-floor lift, but faced with another lengthy wait she ended up paying for a stairlift. “There’s no way I could afford to spend £18,000 on a lift,” she said.Foster said she has fallen at home a number of times, the main reason why her husband has given up his job to care for her, and someone who came to assess her home said they were “embarrassed” she wasn’t a priority.Foster says she has fallen numerous times at home, forcing her husband to give up work to care for her. Photograph: Richard Saker/The Guardian“I can’t be left on my own because I can’t get up and get to places safely. What do you have to be to be a priority? I can’t really walk and I’m not safe on the stairlift, 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 to go.”Via freedom of information requests, the MND Association found the average time from submitting a DFG application to work being completed 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 pay for adaptations such as stairlifts, door widening and ramps, which are essential for people with MND whose mobility can rapidly decline.“The current timeline is just totally unworkable and unacceptable and we need local authorities committing to getting things done much more quickly,” said Alex Massey, head of campaigning, policy and public affairs at the charity.“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.”Massey said people have been left washing in their kitchen sink for months, or sleeping on their living room sofa, because of delays in getting access to funding.The MND Association wants the government to introduce a formal fast-track process for people with the disease and other rapidly progressive conditions, as well as waive the means test for adaptations for people with such illnesses.“When someone is living with a terminal, often rapidly progressive, condition like MND, they need to be fast-tracked. They need to be prioritised. The application needs to be treated as urgent because those needs are only going to progress over time,” Massey said. “And means-testing doesn’t take into account that they are probably going to have to quit their job at some point.”A Ministry of Housing, Communities and Local Government spokesperson said: “Waiting for disabled facilities grant funding can have a devastating impact on people’s lives which is why we expect local authorities to progress as quickly as they can.“We’re taking action by investing £711m investment in the grant to cut down waiting lists, fund thousands of additional home adaptations and ensure that seriously ill people get the home adaptations they need.”