My father came to this country with nothing and worked every day of his adult life. He paid his taxes without complaint. He was our rock — until, in his final years, he wasn’t.
Alzheimer’s came first after two silent heart attacks. Then type 2 diabetes. Then stage 4 bowel cancer, an emergency operation, and a colostomy bag — in a man whose mind could no longer understand why it was there. The falls followed. The hospital stays. The round-the-clock complexity that no family, however devoted, could manage alone. Moving him into a care home wasn’t a choice. It was the only option left.
What we didn’t know — what nobody told us — was that the NHS might have been legally required to fund his care all along.
We had our assessment. A strange, cold, formulaic interview at the hospital where we had no idea what was really being decided. His diabetes, his Alzheimer’s, his cancer, his colostomy, his falls, his cardiac episodes — all of it dismissed. Unless he was on a ventilator or couldn’t move, the system had already decided: his needs were social, not medical. We stood no chance against a machine professionally designed to say no.
For five years we paid. Every annual review labelled his deterioration "natural decline" — as if becoming harder and harder to care for somehow counted against him. The NHS conducted reviews without telling us, without anyone in that room to speak for him.
Only when the cancer gave him three months to live did they step in.
Three months of funding. Five years too late.
This site exists because no family should walk into that room without knowing what it is. If we’d had clear, honest, patient-first information from the start, the outcome would have been different. I know it.
Dad — I’m sorry we couldn’t do better for you. The odds were stacked against us, and I will never stop wishing we’d known a lot more sooner. This is my attempt to make sure other families do.
— Aaron