“Dying before help” MND sufferers trapped in poor homes | UK | News | EUROtoday

She survived most cancers twice, however now Nicky Jones, 65, is dealing with an much more troublesome battle – in opposition to a system that’s leaving her to combat for important residence variations as motor neurone illness takes maintain.

A brand new report from the Motor Neurone Disease Association reveals most individuals with the lethal, quickly advancing illness are left stranded in unsuitable houses attributable to prolonged delays and inadequate funding for important residence variations.

The examine, A Lifeline Not a Luxury, reveals that the typical await adjustments to make their houses wheelchair accessible or to put in life-saving services like moist rooms and ground-floor bedrooms is a yr or extra.

Despite being recognized with MND simply six months in the past, Nicky, who has survived liver and bowel most cancers, is now battling the consequences of the MND, together with the lack of arm and leg motion and a weakening voice. To guarantee her security Nicky, a mom of three from Frome, Somerset urgently requires a moist room put in downstairs, as she will be able to not handle her stairs that are unsuitable for a stairlift. However, she was knowledgeable by her council that the ready time for her adaptation could be 18 months.

“I don’t have time to wait,” mentioned Nicky, a former hairdresser and hospice carer, “I’ve labored in a hospice and taken care of Motor Neurone Disease sufferers for years so I do know what it’s like. Your wants can change identical to that. You do not know what’s going to occur tomorrow and you could get up together 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 a part of our course of to at all times prioritise (grant) functions from people who find themselves decided to be at highest threat, resembling if they’re dwelling with Motor Neurone Disease or different degenerative circumstances. This ensures that they transfer by the grant course of as rapidly as attainable to get the variations they want.

‘If delays happen attributable to circumstances past our management, we proceed to supply assist all through the ready interval from an assigned caseworker who can provide interim choices like mobility aids if needed.

West Berkshire council declined to touch upon a person case, nevertheless sourses mentioned: “West Berkshire council declined to remark, nevertheless a supply inside the cuncil mentioned: `’Where there’s a funding hole, we’d ormally anticipate candidates to discover charitabee sources, landlord contributions or their very own monetary optios

The authorities was approached for remark