Last September, I received an email from a reader called Rosy. At just 53, motor neurone disease meant Rosy was losing her body as she knew it, piece by piece. Previously an assistant librarian at the University of Portsmouth, she was now struggling to hold a book. Too weak to breathe easily, she was reliant on a ventilator at night. In the two-bedroom house Rosy shared with her teenage daughter and cat, she was living out of her front room: a hospital-style bed and commode squashed in next to the television.

You don’t have to be a doctor to recognise that Rosy urgently needs 24/7 specialist home care. Instead, a hospice she had used suggested she apply for continuing healthcare (CHC) – the NHS-funded service that provides care workers for people with “primary health needs” outside hospital – and wait for however long it took for swamped assessors to get to her application. In the meantime, the local council had given her a couple of hours of social care a day: a slot with a well-meaning but untrained agency worker to help her get up and another to get to bed.

Without a carer overnight, Rosy couldn’t use her ventilator; if she were to choke from the secretions in her lungs, she wouldn’t be able to get the vent mask off herself. On the nights she struggled to breathe, she was forced to stay awake and hold the mask to her face in the dark. The NHS’s solution? Rosy said one assessor suggested her 14-year-old daughter fill in as a child carer, including being on call for the ventilator throughout the night.

As I finished reading the email, I could feel Rosy’s desperation through the screen: “I’m having to spend the last days of my life fighting for the right to live.”

In recent weeks, the government has launched NHS........

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