She survived cancer twice, but now Nicky Jones, 65, is facing an even more difficult battle – against a system that’s leaving her to fight for vital home adaptations as motor neurone disease takes hold.

A new report from the Motor Neurone Disease Association reveals most people with the deadly, rapidly advancing disease are left stranded in unsuitable homes due to lengthy delays and insufficient funding for critical home adaptations.

The study, A Lifeline Not a Luxury, shows that the average wait for changes to make their homes wheelchair accessible or to install life-saving facilities like wet rooms and ground-floor bedrooms is a year or more.

Despite being diagnosed with MND just six months ago, Nicky, who has survived liver and bowel cancer, is now struggling with the effects of the MND, including the loss of arm and leg movement and a weakening voice. To ensure her safety Nicky, a mother of three from Frome, Somerset urgently requires a wet room installed downstairs, as she can no longer manage her stairs which are unsuitable for a stairlift. However, she was informed by her council that the waiting time for her adaptation would be 18 months.

“I don’t have time to wait,” said Nicky, a former hairdresser and hospice carer, “I have worked in a hospice and looked after Motor Neurone Disease patients for years so I know what it is like. Your needs can change just like that. You don’t know what will happen tomorrow and you may wake up with your arms not working.”

But instead of getting the support she needed the council suggested she consider crowdfunding or taking out a loan for crucial adaptations to her home, Nicky believes she doesn’t have time to wait.

Motor neurone disease is a fatal illness that affects the brain and spinal cord, leading to the loss of muscle function, speech, and eventually the ability to breathe. Most patients die within two to three years. However, MND Association charity report, drawn from Freedom of Information requests, found that, on average, it takes 375 days in England, 357 days in Northern Ireland, and 289 days in Wales for people to receive the support they need. The charity says the delays have serious consequences for patients who need immediate adjustments to their living spaces – half of MND patients die within two years of their diagnosis.

The charity criticises the current system, stating that it “robs people of both their dignity and the opportunity to make the most of the time they have left.” It is calling for the process to be fast-tracked for people with MND, and for local councils to waive means tests for adaptations needed by those with life-limiting conditions. They say the £30,000 cap on the Disabled Facilities Grant (DFG), which has remained unchanged since 2008, should also be adjusted in line with inflation.

Charlotte Cooke, 30, a mother of one from Thatcham, Berkshire, has also faced challenges in securing the necessary home adaptation funds. Diagnosed with MND in 2023, just six months after giving birth, she is now wheelchair-bound and requires a ground-floor extension to accommodate a wet room and bedroom. Despite applying for a £30,000 DFG, her family has been told it needs to cover a shortfall of £45,000 to complete the necessary work. Additionally, a discretionary grant application for an additional £20,000 was refused due to budget limitations.

“They’re not luxury items, it’s things Charlotte needs to make her life easier, said her father, Bob Parker.

The MND Association is calling for local authorities to implement a fast-track process for MND patients and to increase the DFG cap in line with inflation. “There are hundreds of people with MND whose housing robs them of both their dignity and the chance to make the most of the time they have. 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. MND won’t wait for a broken system to catch up – people living with MND shouldn’t have to either,” said Tanya Curry, Chief Executive of the MND Association.

Motor neurone disease (MND) is a progressive, fatal illness that attacks the nervous system, causing muscle weakness and loss of movement. It can leave patients unable to move, speak, or breathe. Over 80% of those diagnosed with MND experience speech difficulties, and about 50% will experience cognitive changes. MND affects approximately 1 in 300 and kills a third of sufferers within a year and more than half within two years of diagnosis.

There is currently no cure for MND.

A Somerset Council spokesperson said, “It is part of our process to always prioritise (grant) applications from people who are determined to be at highest risk, such as if they are living with Motor Neurone Disease or other degenerative conditions. This ensures that they move through the grant process as quickly as possible to get the adaptations they need.

‘If delays occur due to circumstances beyond our control, we continue to provide support throughout the waiting period from an assigned caseworker who can offer interim options like mobility aids if necessary.

West Berkshire council declined to comment on an individual case, however sourses said: “West Berkshire council declined to comment, however a source within the cuncil said: `’Where there is a funding gap, we would ormally expect applicants to explore charitabee sources, landlord contributions or their own financial optios

The government was approached for comment