More than 5,500 days have now passed since Andrew Dilnot’s commission into England’s adult care system declared it “not fit for purpose” and in need of “urgent and lasting reform”. But it has still not arrived.
How did we get here? And why haven’t we been able to get anywhere further? As Andy Burnham and Baroness Louise Casey gear up for another attempt at lasting adult care reform, The Lead looks at the false starts and failures that brought us here – which go back almost three decades.
Burnham 1.0 and the “death tax” debacle
Adult care isn’t easily defined. It broadly takes two forms – “residential care” provided in care homes, and “domiciliary care” provided in people’s own homes by live-in carers or care visitors.
As far back as 1997, Tony Blair’s New Labour government launched a royal commission into adult care, only to then reject its calls for tax-funded free personal care and more support with residential care costs.
Scotland adopted free personal care in 2002, but little happened in England until July 2009, not long after Burnham became health secretary, when Gordon Brown’s government published its own green paper on adult care reform.
The green paper set out the problems. There was a postcode lottery in who qualified for care support. People had to fund all their own care until their savings had dwindled, and their care costs could vary dramatically and unpredictably. Those who needed a care home were often forced to sell their own home to fund it.
In March 2010 a white paper arrived setting out the Labour government’s decision: “it is time to build a comprehensive National Care Service that is universal and free when people need it”. People would make compulsory contributions to a state insurance system during their working lives, and the state would then pay all their basic care costs when they needed it.
But there was no detail on the size of these “contributions”. If Labour won the 2010 election, they would instead set up a commission to work this out, with implementation delayed to the late 2010s.
It’s hard to avoid the suspicion Labour was kicking difficult decisions into the post-election grass. But the political damage had already been done — in February 2010 reports had emerged that Burnham was backing a compulsory “inheritance levy” on people’s estates when they died in order to help fund adult care. Within a day of the reports, the Tories were putting up billboard adverts around the country attacking the proposals as a “death tax”. Secret talks to get cross-party agreement on care reform collapsed.
No such levy appeared in Labour’s manifesto. They lost the election because of the 2008 financial crisis. But the death tax assault had a lasting effect; limiting the political risks governments were willing to take to fund adult care, and establishing reform as a “hot potato” that few wanted to touch.
Dilnot and the false dawn
The incoming Tory-Lib Dem coalition ditched Labour’s proposals and instead asked independent economist Dilnot to chair a commission to come up with care reform proposals.
But meanwhile the government started enacting heavy spending cuts. Council-funded adult care services took a big hit, especially in poorer areas.
Even in the first year of austerity, most councils cut their social care budgets. A few raised their eligibility criteria, meaning only people with the severest needs would qualify for support, while the majority cut the number or length of care visits to people living at home. Day centres and care homes were closing and care charges for services users were rising.
This was the rapidly worsening backdrop when the Dilnot commission’s report was published in July 2011.
The report rejected Labour’s proposed universal free adult care. “Evidence suggests that those countries that have introduced full social insurance schemes have cut back on care packages and eligibility in response to fiscal pressures,” the report warned. “The consequence of this is that unmet need is rising and people are still left exposed to very high care costs.”
Instead, the Dilnot commission suggested a £35,000 cap on individuals’ care contributions – everything above this would be met by the state.
In addition, more people in residential care would receive means tested support. Those with assets worth less than £100,000, including the value of their home, would have their care needs at least partly funded by the state. A financial means test would still be used to determine who was too poor to pay towards their care, while people who needed adult care by the age of 40 wouldn’t have to pay anything.
The report estimated around a third of adult care users would benefit.
The Dilnot report led to the Care Act 2014. This ensured people would no longer have to sell their own homes during their lifetime to pay residential care charges. It also tackled the postcode lottery with an England-wide eligibility threshold.
But beyond that things were less clear. The Care Act created the legal framework to cap care costs – at £72,000, well above Dilnot’s suggested £35,000 – and raise the means-test thresholds so more people could get state support. But it required ministers to actually implement these measures. This was meant to happen in 2016, but after the Tories won the 2015 election they kicked it back to 2020. It was the start of a pattern.
Even some aspects of the Care Act that were implemented lost their lustre. For example, the Act gave care users the broad right to have their council funding provided directly to them as “direct payments” so they could spend it on meeting their own needs.
It was meant to give care users more independence. But councils are becoming more restrictive in what care users can spend their direct payments on – an attack on their independence.
“Councils are tightening up,” says Jade Hamnett, a care user who chairs ILG Community, a national support group for employers of PAs. “They’re restricting budgets, putting in place ridiculous monitoring that didn’t exist even a few years ago.”
She says that initially, councils accepted many different ways that care users could meet their needs – “specialist physio, art classes that increase your wellbeing … now, you say to your council ‘could I have a specialist physio’, they’re acting like you’re asking for them to buy you drugs”.
“A lot of [the Care Act] is quite good,” says direct payments specialist David Ashley, “but it’s never really operated as it should have done.”
The dementia tax disaster
Theresa May’s 2017 election manifesto pledged to introduce a £100,000 “floor” so that, “no matter how large the cost of care turns out to be, people will always retain at least £100,000 of their savings and assets, including value in the family home”. This was a massive increase on the existing floor – about seven times higher.
But there was a catch. When means-testing a homeowner’s assets, the value of their home is taken into account in relation to residential care costs – but not domiciliary care costs.
The Tory manifesto pledged to abolish that distinction and include housing in all adult care means tests – meaning many homeowning domiciliary care users would lose out on state support. It was a hasty makeweight to fund the £100,000 floor.
The backlash was immediate. Dilnot said that under the plans “the majority of people who are getting care not in a residential care home but in their own home, will find themselves worse off”.
Dubbed the “dementia tax”, the plans sank the Tories’ election campaign, cost them their parliamentary majority, and sealed adult care reform’s reputation as a political minefield – when in truth it was an ill-judged policy thrown into an election campaign out of nowhere.
The longest grass
The Dilnot cost cap wasn’t implemented in 2020. The following year, Boris Johnson pledged to implement an £86,000 cost cap in 2023, which Rishi Sunak then pushed back to 2025 — taking it beyond the last possible date for what was then the next general election.
Meanwhile, Labour’s shadow health secretary Wes Streeting asked Andrew Harrop, head of the Fabian Society think tank, to come up with proposals for a National Care Service.
By the time Harrop’s recommendations were published in 2023, things had gotten much worse since Dilnot’s report in 2011. Austerity had wreaked havoc with council finances. The number of adults receiving adult care services fell 29% between 2008/09 and 2013/14. Social care staffing was in crisis.
Indeed, this five-alarm fire was part of why the Dilnot reforms hadn’t happened. Bill Morgan, an adviser under the Conservatives, recently told the Financial Times the Treasury was against a cap on care costs as it wanted to spend the money on improving services and taking pressure off the NHS instead: “Prioritising a free-to-use social care service risks using scarce public funds for private wealth protection rather than addressing the very real quality and capacity issues.”
After all, “private wealth protection” is in one sense the point of limiting people’s lifetime care costs.
Harrop’s report reflected the greater range of problems that now needed fixing. Amid 165,000 vacancies, it called for a national fair pay agreement to cover the entire adult care workforce. It said more people ought to be found eligible for support than was happening in practice, and implied the Care Act wasn’t always being followed. It suggested a dedicated central government grant to councils to fund the National Care Service, to help address local government’s dire finances.
The report also ranged beyond previous efforts, paying more attention to co-producing adult care systems with the people who would be using them, and embedding individual rights in law. Harrop called for the creation of a National Care Service “constitution” and appeals system, bringing the UN right to independent living into domestic law.
Harrop was more circumspect on care charges. He called for “immediate steps” on charging reform, suggesting options such as making short-term care free. Over time, more measures could be added – maybe the Dilnot cost cap, free care for those with lifelong disabilities, or reform of means testing.
But he didn’t adopt Labour’s old proposals for universal free care: “Charging reform is only one of several potential priorities for extra spending and any reforms need to be balanced against competing pressures and introduced in the context of the government’s overall financial position. That means for the foreseeable future, there will be a mix of adult care services that are free of charge, and services that require a financial contribution.”
Streeting welcomed the report and then essentially ignored it. Labour’s 2024 manifesto committed to a fair pay agreement in adult care — work on which is now underway but won’t be complete until 2028. But beyond that the manifesto made no meaningful commitments to care reform.
Was Streeting hamstrung by Labour’s caution around tax and spending, or was he simply more interested in the NHS side of his brief? Either way, weeks after winning power Labour killed off the long-delayed Dilnot cost reforms — meaning the adult care means tests are still frozen in time from 2010.
The government asked Baroness Casey to head up yet another commission on care reform essentially as a holding position. It was Burnham’s decision to accelerate the commission’s work that has put adult care at the top of the government’s in-tray.
So where now?
There’s no doubt Casey’s eventual proposals will have to be phased in over time – the more ambitious the reform, the longer the timeframe. Burnham said in his Labour conference speech that a National Care Service, free at the point of use, will be in Labour’s next manifesto at an election expected in 2029.
So far there is little detail — inevitably, as Casey won’t report back until next summer. But Burnham fleshed out his thinking on X this week, placing heavy emphasis on older people’s care and pledging “free personal care – support with the most basic human needs: eating, dressing and bathing”, which is potentially quite a narrow conception of free adult care.
Disabled people’s organisations working under the umbrella of the Roadmap to Independent Living Coalition this year set out a three-phase route to a free universal National Care Service based on independent living – crucially, with people’s needs determining financial costs, rather than costs determining how councils assess people’s needs.
“The assessment of need, it’s fixed at the moment to hide unmet need, to meet the amount of resources [councils] have got. So it’s a scam,” says Rick Burgess of the Greater Manchester Coalition of Disabled People. “If we just create change around the edges and don’t change that actual engine of injustice, it will be a completely wasted opportunity.”
Casey has the opportunity to focus on parts of the adult care system that have been marginalised in previous reform proposals. Unpaid carers, often family members, are central to the care of many elderly and disabled people, but councils frequently use them to fill gaps in provision, leaving them overworked.
While Harrop proposed a duty on councils to discuss unpaid carers’ wishes and giving them a legal right to short breaks, other reform plans have tended to overlook them.
“The central test for reform is: does the system give people genuine choice about whether and how much unpaid care they provide,” says Emily Holzhausen, director of policy and public affairs at charity Carers UK. “Does it allow carers to have a life outside of caring? Will it provide the amount of support necessary so that carers do not end up in poverty? Or does it continue to assume that families will absorb whatever formal services cannot deliver?”
Another group often ignored in reform proposals are care users who rely on benefits — the focus is nearly always on protecting people’s savings and housing wealth.
Under current rules, councils must include income from most benefits when deciding how much care users can afford to pay in charges. By contrast, councils must exclude income from paid work. This is the complete reverse of nearly any other means test, as it favours people with more income over people with less income.
“The group that come to our meetings in tears saying ‘I’ve got a new care bill, I can’t decide whether to pay my heating bill this month or my care charges’, is that group – people on benefits, those who are already too disabled to work and are being punished for being unable to work,” says Hamnett.
Councils are also meant to exclude money required for disability-related needs when calculating the means test. But what councils accept as disability-related spending can vary. Hamnett’s council refused to accept her wheelchair as a disability-related expense. “I honestly cannot tell you the trauma this causes when you’ve got a council swearing blind ‘that’s nothing to do with us’.”
Making adult care free doesn’t automatically solve this — first, it would likely take years to achieve under a phased reform programme; second, there’s the risk that what is counted as “adult care” shrinks to make free care cheaper.
And reform won’t come cheap. This year the Health Foundation think tank estimated that free personal and nursing care for over-65s would cost £6.5bn a year, while NHS-style free universal and comprehensive adult care would cost £18.5bn a year by 2035/36. A Dilnot-style “cap and floor” system would cost £4bn a year by 2035/36.
More preventative care could save money by reducing the need for expensive provision, but those savings wouldn’t come through for many years.
“It’s shameful, to be honest, that politicians have put point scoring before fixing this issue,” Burnham said in his speech on social care in July. “But that’s what’s happened.”
It’s understandable he might think that, having been on the receiving end of the Tories’ “death tax” attack in 2010. But why wouldn’t there be disagreement about a new inheritance tax?
It isn’t point scoring that has delayed care reform, but disagreements on how to find the money and what to spend it on. That isn’t “low politics”; it’s what the business of politics is. What’s been missing is a leader willing to lead. ■
About the author: Chaminda Jayanetti is a freelance journalist specialising in social affairs - housing, welfare and public services.
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This piece is the latest in our Burnham Britain series, where we're testing the new agenda against the reality on the ground.
So far we've looked at what his conference speech tells us about the kind of premiership he wants to run, asked whether he can really end rough sleeping by Christmas, and revealed in an exclusive that more than a third of people at risk from cuts to universal credit disability payments are over 50, a group facing some of the toughest barriers to work.
Now we've gone back over the long, painful history of adult care. There's plenty more dig into, and we'll keep asking the same questions: what's actually being promised, who pays, and who gets left out.
If there's an area you want us to look at, let us know in the comments.