People in need of adult social care are sometimes being charged for “utter shite”, the government’s social care tsar said as she called for a “reckoning” over the sector.
Baroness Louise Casey, who is leading an independent commission on adult social care, described social care as a “creaking, inconsistent and impenetrable” system held together with “sticking plasters and glue”.
Speaking at Nuffield Trust summit on Thursday, Baroness Casey suggested sometimes people are charged for “utter shite” care, although she said some services were “brilliant.”
During her speech she also criticised the NHS for “winning” over social care when it comes to funding, and blasted the NHS medicines regulator NICE for rejecting a new expensive Alzheimer’s drug.
“New breakthrough drugs are ‘too expensive’ to deliver on the NHS for what they call the ‘small benefits’ they’ll give,” she said in her speech.
“I know the NHS can’t afford every drug, but if I was diagnosed with Alzheimer’s disease and a treatment would give me six months to talk to my family and get my affairs in order before the disease took hold, i’m not sure I would call that a small benefit,” she added.
In a letter to Wes Streeting published on Thursday, Baroness Casey called for new backing to “scale up investment in dementia trials.”
“As a first step, I am asking the government to fund a small trial that is ready to proceed, using funding that is already available,” she said.
She also called for Wes Streeting to create a new government dementia tsar.
The baroness criticised the social care waits for patients with Motor neurone disease (MND), which affects 5,000 people in country at any given time. She explained patients face long waits for home care packages, warning some wait more than a year for changes to their house, yet the life expectancy from diagnosis is just under two years.
During a speech she said there has not yet been “a moment of reckoning” as to how society supports and cares for “an older, sicker population and greater levels of disability”.
She described the current system between the NHS and Social Care as “drawn-out discussions on who pays for what”, as “simply anxiety-laden and confusing”.
The peer, who has previously headed a number of major reviews including into rough sleeping, culture and standards of behaviour in the Metropolitan Police and a national audit into grooming gangs, added: “I have been in Whitehall long enough and I have run enough cross-government programmes to know that when responsibility is shared it can end up being no-one’s responsibility.”
Labour faced criticism after it was elected in 2024 for scrapping plans for an £86,000 cap on the amount anyone in England would need to spend on their personal care over their lifetime, having argued the proposals were not “deliverable” in the time frame.
Unlike NHS care, social care is not free at the point of use and challenges of meeting high care costs have sometimes meant people have been forced to sell their homes to pay for what they need.
Responding to Baroness Casey’s speech, Sarah Woolnough, Chief Executive of The King’s Fund, said: “The Commission will now need to convert understandable outrage about the state of adult social care into actionable recommendations for wider reform that live up to the language of a ‘moment of reckoning’ Baroness Casey put forward today.”
A Department of Health and Social Care spokesperson said: “The Government is taking decisive action by establishing a new National Safeguarding Board to better protect vulnerable adults, fast‑tracking access to care for people with motor neurone disease and accelerating work to transform dementia care and research, including by creating a dementia leadership role to drive forward action.”
