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 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. Think of the last time you heard a politician lobby for more cash for the service, or a headline expose how disabled people are being left in danger without staff. CHC is in effect the unloved relation at the health and care party, put in the corner and ignored as the music drowns out the cries.
Over the next five months, I continued to speak to Rosy as she fought for care. As the weeks passed by and the leaves turned from green to brown, her motor neurone disease progressed. With her breathing weaker but still no specialist care at home, Rosy had to spend the autumn being bounced between living in hospital, a care home and a hospice – it was the only way she could use her ventilator. But one loss was more painful than the rest. With Rosy unable to be a hands-on single mum any more, her daughter moved out to stay with a “special guardian” – a family friend given responsibility by the family court.
The day before Halloween, Rosy emailed me the latest on her personal nightmare. Back at home, her social worker had asked her to keep another care log for 72 hours to help her case for CHC – a kind of homework assignment for human rights. Rosy sent me photos of the diary. In thick green felt-tip and capital letters, she had written: “I HAVE A PRIMARY HEALTH CARE NEED”, as if begging someone to listen. On one page, next to boxes of text, she had drawn a cartoon of her cat, Boyo, with the words: “Cats against tedium.” It was simultaneously gallows humour and a quiet protest. As she wrote in her email: “I did this because it is not the paperwork that matters. It is me.”
This blend of bureaucracy, complexity and opaque decision-making has come to define the CHC system. According to NHS Digital statistics, CHC eligibility numbers per population size decreased in England between 2017-18 and 2023-24, despite evidence of greater proportions of people living with complex needs. A report by Age UK last month found CHC to be an “extreme postcode lottery” that meant individuals were losing out on “life-changing funding”. Depending on where you live, the proportion of assessments that result in a person being eligible varies from 3% to 58%. Here’s the quiet part out loud: such a staggering variation suggests CHC is not a rule-based system judged on need, but a rigged game largely determined by squeezed local NHS budgets.
In November, Rosy finally received a CHC award: a meagre 12 hours a day. A few weeks later, assessors relented and gave her 16 hours: overnight care and a few hours for when she was awake. That left eight hours every day where the state thinks it is perfectly fine to leave someone who is now unable to move, breathe or eat without help by themselves.
It’s often said structural inequality means certain people in society are “voiceless”. For Rosy, that’s literal. By December, she was no longer able to type more than a few words, so two of her friends emailed me on her behalf. It was more bad news: her care package had been bumped back down to 12 hours.
Rosy was still able to speak a little, but her limited breath meant she couldn’t make it through a phone call. Instead, we spoke over WhatsApp voice notes: I sent Rosy a question and she sent a short audio message back. “I’m suffering from overwhelming anxiety and depression,” she said, her voice cracking.
Over Christmas, Rosy’s friends and family rallied round: a rota of loved ones working through the holidays as fill-in carers. As the lights and tree came down, they went back to work. Rosy’s parents and brother were now draining their savings to pay for agency workers so she could use the commode in the day. On just the NHS hours, she would be forced to sit in incontinence pads, despite not being incontinent.
When I approached NHS Hampshire and Isle of Wight, it wouldn’t comment on individual cases because of patient confidentiality but said: “We deliver continuing healthcare services in accordance with the national framework set out by the Department of Health and Social Care.” It added: “If someone has any concerns about their support, we encourage them to speak to their local team in the first instance who will be happy to talk it through.”
More “talking” is little help to Rosy. But her battle feeds into a wider scandal: how the health and care systems in this country have been run into the ground by underfunding and neglect, and the casual indifference or outright disdain shown to those who dare ask for help.
A notification flashes up on my phone. It’s Rosy with 38 seconds of precious breath. Without funding for 24/7 care at home, she has been offered a “cheaper” place in a care home. Unable to swallow any more, Rosy will have a feeding tube put in next week. Then she must pack up her life and leave the family home. “[All of this] has nearly broken me as a person,” she whispers. “The burden of the disease is enough, but when you add having to fight for everything … It feels like I’m being humiliated at the time I’m most vulnerable.” Those with power would do well to listen.
Frances Ryan is a Guardian columnist
