A reader with a terminal illness emailed in despair. What she told me should shock us all | Frances Ryan

LAst September I received an e -mail from a reader called Rosy. Just 53, meant the disease of the motor neuron Rosy lost her body as she knew it, piece by piece. Rather an assistant librarian at the University of Portsmouth, she now had trouble keeping a book. Too weak to breathe easily, she was dependent on a fan at night. In the house with two bedrooms, Rosy shared with her teenage daughter and cat whom she lived out of her front room: one in hospital style in a hospital style and a commode that was crushed next to the television.

You do not have to be a doctor to acknowledge that rosy urgently needs specialist home care. Instead, a hospice suggested that she had used that she applied for continuous health care (CHC)-the service that offers care workers funded by the NHS for people with “primary health needs” outside the hospital and waiting its request for a long time. In the meantime, the city council had given her a few hours of social care a day: a lock with a well -meaning but untrained office church to help her get up and another to go to bed.

Without a caregiver at night, Rosy could not use her fan; If she choke on the partitions in her lungs, she could not get the venting mask of herself. In the nights she had trouble breathing, she was forced to stay awake and hold the mask in the dark against her face. The NHS solution? Rosy said that an assessor suggested that her 14-year-old daughter entered as a child carer, including the fan during the night.

When I finished reading the e -mail, I felt Rosy’s despair through the screen: “I have to spend the last days of my life fighting for the right to live.”

Rosy wears her fan, which she trusts to breathe at night.

In recent weeks, the NHS reform and a consultation for social care has launched for a significant fanfare. No report was made of CHC, or the tens of thousands of people like Rosy who trust it. Think of the last time you heard a politician lobby for more money for the service, or a headline reveals how disabled people without staff are in danger. CHC is in fact the non -affected relationship on the Health and Care Party, placed in the corner and ignored while the music is overrun.

In the next five months I kept talking to Rosy while they moisture for care. As the weeks passed and the leaves changed from green to brown, her motor neuron disease progressed. With her breathing weaker but still no specialist care at home, Rosy had to spend with the fall that bounced between living in the hospital, a care home and a hospice – it was the only way she could use her fan. But one loss was more painful than the rest. Because Rosy could no longer be a hands-on single mother, her daughter moved to stay with a “special guardian”-a family friend who received the responsibility of the family court.

The day before Halloween e -Mailde Rosy me the last new on her personal nightmare. At home, her social worker had asked her to keep another care log 72 hours to help her with 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 need first-line health care”, as if I begged someone to listen. On one page, next to boxes with text, she had a cartoon of her cat, Boyo, drawn with the words: “Cats against Tedium.” At the same time it was the humor of humor and a calm protest. As she wrote in her e -mail: “I did this because it is not the paperwork that matters. It’s me. “

This mix of bureaucracy, complexity and opaque decision-making has come to define the CHC system. According to NHS Digital Statistics, CHC fitness figures per population scope decreased In England between 2017-18 and 2023-24, despite proof of larger proportions people who live with complex needs. A Report by age UK Last month, CHC found an “extreme zip code lottery” that meant that individuals lost “life-changing financing”. Depending on where you live, the share of reviews varies in that a person is eligible from 3% to 58%. Here the silent part is out loud: such a stunning variation suggests that CHC is not a rules-based system that is assessed on need, but a decorated game largely determined by pressed local NHS budgets.

In November, Rosy finally received a CHC price: a meager 12 hours a day. A few weeks later, the assessors admitted and gave her 16 hours: overnight care and a few hours ahead when she was awake. That left for eight hours every day, where the state thinks it is fine to leave someone who cannot move, breathe or eat without help in itself.

It is often said that structural inequality means that certain people in society are “voiceless”. For Rosy that is literal. By December she was no longer able to type more than a few words, so two of her friends sent me on behalf of her. It was more bad news: her care package had been returned to 12 hours.

Rosy was still able to speak a bit, but her limited breath meant she couldn’t make a phone call. Instead, we spoke about the speech notes of WhatsApp: I sent Rosy a question and she sent a short audio message back. “I suffer from overwhelming fear and depression,” she said, her voice wriggled.

During Christmas, Rosy’s friends and family gathered around: a rota of loved ones who work through the holidays as fill -in carers. While the lights and the tree came down, they went back to work. Rosy’s parents and brother now left their savings to pay for employees of the agency, so that she could use the daytime start. On the NHS hours she would be forced to sit in incontinence blocks, even though they are not incontinent.

When I approached NHS Hampshire and Isle of Wight, it would not comment on individual cases because of the patient’s confidentiality, but said: “We provide continuous care services in accordance with the national framework explained by the Ministry of Health and Social Care . ” It added: “If someone is worried about his support, we encourage him to first talk to their local team who would like to talk through it.”

More ‘talking’ is little help for Rosy. But her struggle feeds in a broader scandal: how the health and care systems in this country have entered the ground through under-financing and neglect, and the informal indifference or outright contempt for those who dare to ask for help.

A report blinks on my phone. It is rosy with 38 seconds of precious breath. Without financing for 24/7 care at home, she has offered a “cheaper” place in a care home. Rosy can no longer swallow and have a food tube in next week. Then she has to pack her life and leave the parental home. “(All this) almost broke me as a person,” she whispers. “The burden of the disease is sufficient, but if you add that you have to fight for everything … it feels like I am humiliated the moment I am most vulnerable.” Those with power would do well to listen.