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.
