'They told me it’d be two to three years for a wet room... I’ll be dead by then'

She was later diagnosed with motor neurone disease – a life-limiting illness commonly associated with male athletes. It makes it progressively harder to move, to speak, to eat and to breathe.

Charlotte’s husband and mother both gave up paid work to care for her, and they moved into social housing in Thatcham, West Berkshire – but even that is ill-suited to her needs, and the process of amending their home is proving difficult.

Now 30, Charlotte, who is wheelchair-bound having lost control of her limbs, says she requires a ground floor extension for a wet room to live out her final years in dignity and safety.

The building works, however, will cost as much as £75,000. The government does have a mandatory disabled facilities grant provided via local councils, which it increased by £86 million to £711 million this financial year to fund tens of thousands of home adaptations annually.

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But this was capped at a maximum of £30,000 per case in England, leaving Charlotte and her family having to source the rest themselves. Unless they can show they can cover all remaining costs on their single income, the application process can’t even begin.

With Charlotte struggling to talk, her father Bob tells us that they “don’t know what Charlotte’s prognosis is and how long she may be with us, so time is of the essence. Planning applications for someone with a terminal condition shouldn’t be treated the same as a family simply extending their kitchen.”

If the project “doesn’t go ahead,” explains Bob, “then Charlotte’s front room becomes a bedroom and she’s strip-washed there in front of her children. Alternatively, Charlotte stays upstairs and then becomes a prisoner in her own home and isolated from her family.”

Councils have a legal duty to provide adaptations for disabled people, subject to a needs assessment, eligibility criteria and a means-test. They can also offer additional funding at their own discretion.

Charlotte did apply for a discretionary grant from her local authority to plug the gap. But with several cash-strapped councils at financial breaking point, some are unable to help.

West Berkshire council told us it “cannot provide discretionary support on this occasion” as “it does not have the budget” due to the “high volume of mandatory applications still awaiting approval.”

Up in Yorkshire, 54-year-old fellow career-woman Nicole Foster is another of the 5000 adults in Britain suffering with the condition. She was diagnosed earlier this year.

Because of the degenerative nature of the disease, Nicole sought immediate essential modifications to her home. Yet on average, it takes a year from application to installation. This is despite a third of people with MND dying in that timeframe, with more than half dying within two years of diagnosis.

“The council came round and told me it would be 2-3 years for a wet room,” she said. “I told them I’ll be dead by then.”

Nicole felt she couldn’t afford to wait, and chose to pay for the changes herself, fearing she may have a limited time window to benefit from adaptations before her mobility deteriorates further.

“I’ve had to buy my own wheelchair, my own stairlift and my own bathroom. It’s not good enough. I’ve worked all my life, I’ve never claimed any benefits, I paid an absolute fortune in tax, and when you ask for a little bit back, you get nothing.”

Nicole says she’s “still waiting for anything to be provided by the council,” apart from two plastic toilet seats. “I’ve chased the council every week,” she added. “I’ve spoken to my local MP. Then three weeks ago, I was told the person I was dealing with from the council has now left.”

Nicole’s council, Calderdale, has promised to install a through-floor lift for her next month.

It told LBC in a statement that “Mrs Foster opted to fund her own bathroom adaptations,” but it is now “supporting her to ensure that facilities sufficiently meet her needs” and it "absolutely understands the cruel nature of diseases like MND means adaptations are often required quickly.”

Nicole and Charlotte are just two of many people with MND forced to spend their final few years battling a long, complex and dispiriting process.

Their experiences echo findings from a recent report by the Motor Neurone Disease Association, which warns of long delays and insufficient funding for crucial home adaptations.

The charity calls the current system “broken” and urges reform. It’s launched a campaign called ‘Unlock the Door’, demanding local authorities across the country to implement a formal fast-track process for people with progressive conditions and increase the statutory government grant cap to at least £50,000 so it’s in line with inflation. The cap hasn’t changed since 2008, despite average inflation rising by more than 60% in that time.

The MND Association claims that would incur additional cost for England of around £35 million per year.

Richard Evans, Director of Engagement at the MND Association argues it’s necessary as the current situation amounts to “a scandal happening behind people’s doors. We want to bring it into the light and show people what’s happening. This isn’t acceptable in 21st century Britain.”