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'I survived cancer... now I'm fighting for vital MND support'

Sunday Express

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December 07, 2025

NICKY Jones has survived cancer twice but is now facing an even more difficult battle - against a system forcing her to fight for vital home adaptations as motor neurone disease takes hold.

- BY LUCY JOHNSTON Social Affairs Editor

A report from the MND Association has revealed most people with the deadly, rapidly advancing condition are left stranded in unsuitable homes due to the time it takes for council planning decisions on vital facilities such as wet rooms and ground floor bedrooms.

The study, A Lifeline Not a Luxury, found there is also insufficient funding for critical home adaptations, and MND patients are being forced to wait for a year or more for changes to make their homes wheelchair accessible.

Despite being diagnosed with MND just six months ago, Nicky, 65, who has survived liver and bowel cancer, is now struggling with the loss of arm and leg movement, and a weakening voice.

To ensure her safety the mother-of-three, from Frome, Somerset, urgently requires a wet room downstairs, as she can no longer get up her stairs, which are unsuitable for a chairlift.

She has been left dismayed by news from her council that she faces an 18-month wait for adaptations. "I don't have time to wait," said the former hairdresser and hospice carer.

"I have worked in a hospice and looked after MND patients for years, so I know what it is like.

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