Andy Burnham has vowed to fast-track the Casey Commission, an independent review of adult social care in England, with final recommendations expected by summer 2027. “I think social care in England is as unfair as American healthcare,” Burnham said in a speech on Wednesday. “The vulnerable pay with everything and it can completely leave them with nothing.” The Guardian spoke to people with experience of navigating the social care system who say it is in urgent need of reform.
Mary: Alzheimer’s and Financial Ruin
Mary’s late husband, Richard, was diagnosed with early onset Alzheimer’s disease in 2015 at age 55. She quit her job as a fashion designer to care for him and paid for 15 hours of care a week, nearly £27,000 a year. When Richard entered a residential care home in 2024, the couple were forced to sell their London house to meet care bills of £2,000 a week. “I’m left with virtually no savings, living on my pension, working a bit and I have very good friends who I rent from,” says the 67-year-old from Kent. She says they worked hard to build a good life and it was frustrating to give it all up. “I’m a very positive, resilient person but I think I’ve been through a really ugly tunnel with very little help.”
Mary also had to juggle caring with everyday tasks. Though grateful for support from charities like Alzheimer’s Society, she wishes more guidance existed to help carers manage finances when a loved one is unexpectedly diagnosed with dementia. She feels dementia is neglected by the system. “If it is not something you can give a drug to, you’re swept aside. You have to sit quietly until you die and hope your friends and family look after you.” She now worries about her children’s future: “It’s giving me sleepless nights. My children can’t afford to buy anywhere and when they may need care, they won’t have any savings.” Mary is happy to pay more tax to help fund social care. “We pay insurance for our cars and no one complains. Why can’t we pay insurance to take care of us when we’re older?”
Annabel: Disparities in Charging
Annabel’s 27-year-old son, Fred, has Down’s syndrome, is autistic, and is deaf. He lives independently with carers’ help. His local council, North Somerset, charges him £147.54 a week from his benefits for care, leaving him very little. As home care providers, councils decide charges. “Fred would be £147 a week better off if he lived in Hammersmith and Fulham, where they don’t charge for home care, and £47 better off in Wales, where the cost cap for care at home is £100,” says Annabel. She believes the system needs proper investment. “Charging people on benefits for their care doesn’t seem like a reasonable thing to be doing.” Annabel supports Fred with his phone bill and funds activities. This year he will run out of his own money so she will have to pay all expenses not covered by his benefits. “He’s been burning through thousands of pounds of savings from birthdays.” She worries less attention is given to working-age people with serious disabilities than to older people needing care. She also criticises accusations that young people are “scamming the system” through disability benefits. “I only know about people like Fred and I know they are not.” Annabel praises his carers and wants social care fully funded like the NHS. She is anxious about the future as her mother, with dementia, had to sell her house and move into a care home, yet Fred cannot provide for himself. “At least she could sell her home. If you are born with a disability, you’re never given the money. This is not how we should look after the most vulnerable in our society.”
Jayne: Inadequate Support and Bureaucracy
Jayne’s daughter Alice, 32, is autistic and has complex mental and physical health issues. After a lack of adequate support, Alice initially had home care of “very poor quality with little understanding of her autism.” At 18, she was treated in a specialist hospital and later placed in a council-funded residential home in Sussex run by a private provider. “It was horrendous quality, with poorly trained and overworked staff. The place was in chaos. It was not how we expected it to be – somewhere caring and supportive,” Jayne says. “It was clear staff didn’t have adequate training in autism, a lot were agency workers.” Alice was left with trauma and still experiences flashbacks, her mother says. After being deemed unable to live at home, Alice went back into hospital. Jayne often received calls to collect her, leading to her returning home permanently three years ago.
Alice gets 14 hours of home care support but needs 24-hour care. Alongside caring and working part-time, Jayne employs personal assistants. “I’ve had to become an employer and do HR which has added to the amount of work that I have to do. I felt I had no choice because of the existing care.” Jayne struggles to access emotional support as charities are overstretched. Her local carers’ support organisation has reduced services, scrapping its counselling service and cutting funding for hobbies and trips. She finds it difficult to talk about her life as a carer. “It breaks you to speak about life as a carer because I don’t want to make her [Alice] feel like it’s her fault.” Jayne wants more cohesion between the NHS and social care. “Instead of being there with our loved ones we are spending so much time managing bureaucracy.” She thinks social care reform should be supported by a tax increase. “We shouldn’t see it as money that results in nothing. We tend to forget about people who have a long-term disability or health issue. There’s an assumption that you’re old and you sell your house to pay for it. It can happen to you at a much younger age.”
