MND Home Adaptations Delays Leave Patients Dying in England

Published: 24 December 2025. The English Chronicle Desk. The English Chronicle Online.

People living with motor neurone disease in England are dying while waiting for essential home adaptations, according to campaigners who warn the system is failing those with rapidly progressing conditions. New findings reveal that many patients spend the final months of their lives trapped in unsafe homes, unable to access timely support designed to preserve dignity, safety, and independence.

Motor neurone disease, commonly known as MND, is a terminal neurological condition that attacks the nerves controlling movement. It often progresses quickly, stripping individuals of mobility, speech, and independence within months. For many, adapting the home becomes a medical necessity rather than a lifestyle improvement. Yet evidence suggests that bureaucratic delays mean these adaptations arrive far too late, if at all.

Research by the MND Association shows that people in England wait an average of 375 days from applying for a Disabled Facilities Grant to having work completed. This delay is devastating when set against the harsh reality of the disease. Around one third of people with MND die within a year of diagnosis, and roughly half die within two years. For them, a year-long wait effectively denies access altogether.

Campaigners argue that these delays force people to spend their final months fighting for basic support instead of focusing on comfort and family time. Many are left in homes that actively endanger them, increasing the risk of falls, injury, and emotional distress. The situation has sparked renewed calls for urgent reform and a fast-track system for terminal illnesses.

Tanya Curry, chief executive of the MND Association, described the situation as deeply unjust. She explained that for someone whose condition can deteriorate dramatically in a short period, waiting more than a year for adaptations is equivalent to being refused them. Her comments reflect widespread frustration among patients, families, and carers across England.

The human cost of the delays is perhaps best illustrated through individual experiences. Nicole Foster, a 56-year-old woman diagnosed with MND earlier this year, found herself facing a two to three-year wait for grant funding to adapt her bathroom. Faced with the reality of her prognosis, she chose to spend her entire life savings, alongside money raised by supporters, to make her home accessible.

Foster said she was blunt with officials, telling them she would not live long enough to wait. Despite this, the only immediate help offered was an additional handrail on her stairs. After a lifetime of working and paying taxes, she said the lack of support left her feeling forgotten at the moment she needed help most.

Instead of using her remaining time and money to travel or enjoy experiences with her family, Foster has been forced to prioritise basic safety. She also requires a through-floor lift, but the projected cost of around eighteen thousand pounds made it impossible without grant support. As a temporary measure, she paid for a stairlift, even though it does not fully meet her needs.

The consequences of inadequate adaptations have been severe. Foster has fallen several times at home, prompting her husband to give up his job to become her full-time carer. During an assessment visit, she recalls being told by a professional that they were embarrassed she had not been classed as a priority, a comment that underscored the system’s shortcomings.

She explained that she cannot be left alone because she struggles to move safely around her home. Despite being unable to walk properly and facing clear risks, she still must navigate complex processes to access help. For people with MND, she said, improvement is not possible, and support packages should be ready immediately after diagnosis.

Freedom of information requests by the MND Association reveal that delays are not limited to England. In Northern Ireland, the average wait from application to completion is 357 days, while in Wales it stands at 289 days. Although slightly shorter, these timescales remain incompatible with rapidly progressive conditions.

Disabled Facilities Grants are administered by local councils but funded by central government. They cover adaptations such as stairlifts, ramps, widened doorways, and accessible bathrooms. For people with MND, these changes are essential to maintain even a basic level of independence as mobility declines.

Alex Massey, the association’s head of campaigning, policy, and public affairs, described the current timelines as unworkable and unacceptable. He warned that leaving people waiting for more than a year traps them in unsafe and unsuitable homes, placing immense strain on patients and carers alike.

According to Massey, some people have been forced to wash in kitchen sinks for months or sleep on sofas in their living rooms because bedrooms and bathrooms remain inaccessible. These conditions, he said, strip people of dignity during an already traumatic period of life.

The charity is calling on the government to introduce a formal fast-track process for people with MND and other rapidly progressive illnesses. It also wants means testing for adaptations to be waived in such cases, recognising that many patients are forced to leave work as their condition advances.

Campaigners argue that treating these applications as routine ignores the medical reality of terminal illness. Needs only increase over time, and delays compound physical decline. Means testing, they say, fails to account for lost income, increased care costs, and the emotional toll on families.

In response, the Ministry of Housing, Communities and Local Government acknowledged the severe impact that waiting for grant funding can have on lives. A spokesperson said the government expects local authorities to progress applications as quickly as possible and recognises the urgency for seriously ill people.

The ministry highlighted an investment of £711 million into the Disabled Facilities Grant scheme, aimed at reducing waiting lists and funding thousands of additional home adaptations. Officials insist this funding will help ensure that vulnerable people receive the support they need, though campaigners remain sceptical about how quickly change will reach those currently waiting.

For families affected by MND, time is the one resource they do not have. Each delayed assessment, approval, or installation represents lost weeks of safety and comfort. While funding commitments are welcome, campaigners stress that structural reform and clear prioritisation are essential to prevent further suffering.

As England’s population ages and diagnoses of complex conditions increase, the pressure on local authority systems is likely to grow. Advocates warn that without decisive action, more people with terminal illnesses will continue to die waiting for help that arrives too late to make a difference.

For those living with MND today, the call is simple and urgent. They want a system that recognises the speed and severity of their condition, values their remaining time, and provides practical support without unnecessary barriers. Until that happens, campaigners fear that stories like Nicole Foster’s will remain heartbreakingly common.