A reader with a terminal illness emailed in despair. What she told me should shock us all (The Guardian, 28 January 2025)

Summary

Rosy is unable to move, breathe or eat unassisted. Yet NHS assessors think it’s fine to leave her alone for hours at a time.

Content

At just 53, motor neurone disease means Rosy is losing her body piece by piece. Too weak to breathe easily, she is reliant on a ventilator at night. In the two-bedroom house Rosy shares with her teenage daughter and cat, she is 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 can’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.

In recent weeks, the government has launched NHS reforms and a social care consultation to considerable fanfare. There has been no mention of CHC, or the tens of thousands of people like Rosy who rely on it.