“Dying before help” MND patients trapped in poor houses | UK | News

He has survived cancer twice but Nicky Jones, now 65, now faces an even tougher battle against a system that has left him struggling to make vital home adaptations as motor neurone disease sets in.

A new report from the Motor Neurone Disease Association finds that most people with the fatal, rapidly progressing disease are trapped in unsuitable homes due to long delays and inadequate funding for critical home adaptations.

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

Nicky, who has survived liver and bowel cancer, is now struggling with the effects of MND, including loss of arm and leg movements and a weakened voice, despite being diagnosed with MND just six months ago. To ensure the safety of mother-of-three Nicky, from Frome, Somerset, she urgently needs a wet room installed downstairs as she can no longer manage her stairs, which are not suitable for a stairlift. However, he was informed by the council that the waiting period for his adaptation would be 18 months.

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

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

Motor neuron disease is a fatal disease that affects the brain and spinal cord, leading to loss of muscle function, speech, and eventually the ability to breathe. Most patients die within two to three years. But the MND Association’s outreach report, compiled from Freedom of Information requests, found that on average it took people 375 days in England, 357 days in Northern Ireland and 289 days in Wales to get the support they needed. The charity says the delays have serious consequences for patients who need urgent adjustments to their living spaces, with half of MND patients dying within two years of diagnosis.

The charity criticizes the current system, saying it “robs people of both their dignity and the opportunity to make the most of their remaining time”. It calls for the process to be accelerated for people with MND and for local councils to waive means tests for adaptations needed by people with life-limiting conditions. They say the £30,000 cap on the Disability Facilities Grant (DFG), which has remained unchanged since 2008, should also be adjusted for inflation.

Charlotte Cooke, 30, a mother-of-one from Thatcham, Berkshire, also faced difficulties in securing the necessary home adjustment funds. The woman, who was diagnosed with MND in 2023, just six months after giving birth, is now wheelchair bound and requires a ground floor extension to make room for a wet room and bedroom. Despite applying for a £30,000 DFG, his family were told he would have to make up the £45,000 shortfall to complete the necessary work. An application for a discretionary grant of an additional £20,000 was also rejected due to budget constraints.

“These aren’t luxury items, they’re things Charlotte needed to make her life easier,” her father, Bob Parker, said.

The MND Association is calling on local authorities to implement an expedited process for MND patients and increase the DFG limit 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 can progress dramatically in a matter of months, waiting a year or more for vital adaptations to be made is tantamount to their complete denial. MND does not wait for a broken system to catch up – nor should people living with MND need to,” said Tanya Curry, Chief Executive of the MND Association.

Motor neuron disease (MND) is a progressive, fatal disease that attacks the nervous system, causing muscle weakness and loss of movement. Their patients may not be able to move, speak or breathe. More than 80% of people diagnosed with MND have speech difficulties and approximately 50% will experience cognitive changes. MND affects about 1 in 300 people and kills a third of patients within a year and more than half within two years of diagnosis.

There is currently no cure for MND.

A Somerset Council spokesman said: “It is part of our process to always prioritize (grant) applications from people identified as being at highest risk, such as if they are living with Motor Neurone Disease or other degenerative conditions. This ensures they get 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 during the waiting period from a designated social worker who can offer temporary options such as mobility aids if necessary.

West Berkshire council refused to comment on an individual case, but sources said: “West Berkshire council refused to comment, but a source within the council said: ‘Where there is a funding gap, we would normally expect applicants to explore charitable resources, landlord contributions or their own financial options.

The government was contacted for comment