Magnificent, yet passed over, targeted, fined – family carers are the hidden face of the care crisis

The Guardian

25-05-2025

The word 'care' sits in a strange place in UK politics, somehow combining an increasing sense of urgency with a maddening and very British vagueness. Most of us know that there is a worsening care crisis. The reasons, we are told, are to do with demographics – more old people, put bluntly – and the seemingly eternal lack of money, or governments willing to spend enough on the kind of care most politicians fixate on: the sort that revolves around either residential settings or home visits, done by the anonymous mass of people we call 'care workers'. This category of human being is now in the news as never before: a lot of them tend to come from abroad, something that Westminster has now decided is intolerable.
What a mess this issue is, and how many other matters the debate about it omits – not least the care needs of hundreds of thousands of adults who are learning disabled. But by far the biggest gap in our understanding centres on about 7 million unpaid carers, whose lives are explored in a new book. Strangely, it has been written by a frontline British politician; stranger still, the best bits are among the most compelling, moving pieces of political prose I have read in a very long time.
The author of Why I Care: And Why Care Matters is the Liberal Democrat leader, Ed Davey. Its first third focuses on his own life story: his experience of looking after the mother he lost to cancer when he was still in his teens, and the life he and his wife, Emily – and their daughter, Ellie – share with his son, John, who was born with physical and intellectual disabilities.
Like all parents, Davey experiences joy and worry, but at intense extremes. As the parent of a child with special educational needs, I recognise his deep fears about the future that awaits his son after his parents have gone: 'No one's going to love him, and hold him, like Emily and I do.' And just about everything he says is full of a mixture of frustration and bafflement I completely relate to, mostly focused on our systems of government and politics, and the archaic workings of what remains of the welfare state.
Pretty much by definition, what Davey calls family carers lead pressured, often sleepless, overburdened lives. Large numbers of them have to cope with mental health problems. More than 1 million are reckoned to live in poverty. Attempts to calculate the monetary worth of what carers do, he says, have put the aggregate figure at about the same level as the UK's annual spend on the NHS. But how often do we hear about any of this?
Family care was part of the pre-political lives of Keir Starmer and Angela Rayner; it was also there in David Cameron's story. But what it demands of policymakers still seems too awkward: in a political culture that rarely sees issues as much more than debates about budgets, the needs of people who look after their close relatives seem too complex and messy to really grapple with. There is, moreover, a problem with Westminster's prevailing conceptions about what makes life worthwhile: as politicians constantly describe the voters they worry about as 'working people' who make up 'hard-working families', it's pretty obvious who such thinking excludes.
As a result, omissions and oversights pile up. The UK has no system of paid leave for family carers: one study Davey quotes suggests that 40% of people who provide high-level family care have had to give up work completely. Huge injustices are woven into the lives of young carers – who have to start seeing to the needs of siblings and parents at pitifully young ages – and how little the education system makes allowances for what they have to do at home.
As I read Davey's book, Private Eye magazine gave this year's Paul Foot award for investigative journalism to my Guardian colleagues Josh Halliday and Patrick Butler, for their work on a mind-boggling scandal: the story of how hundreds of people who received carer's allowance (which is £83.30 a week) were prosecuted for unwittingly breaking cruel earnings rules. Everything came down to a key facet of the benefits system that remains in place: the fact that earning a penny over a weekly threshold of £151 – now raised to £196 – meant that the entirety of someone's carer's allowance was summarily withdrawn; and if the relevant systems didn't pick up any accidental exceeding of the earnings limit, 'overpayments' could fester on for months, until people whose lives were already loaded with pressures and stresses were suddenly hit with impossible demands for payback.
The government has announced an overhaul aimed at spotting overpayments more quickly, but all this is surely the ultimate example of the institutionalised callousness displayed towards family carers: not just the miserly levels of benefits they receive, but the way the system seems to cast them as people prone to lie and cheat (witness one of many stark recent headlines: 'Mother of autistic boy left with £10,000 debt after breaching DWP rules by £1.92 a week'). The way officialdom treats any combination of work and care, moreover, is reflected in rules about education: if you study for less than 21 hours a week, you remain eligible for carer's allowance – but any more time spent on formal learning means you lose the benefit completely.
And now there is another level of cruelty. The government's plans to cut down millions of people's entitlements to the personal independence payment will have knock-on effects for carers, depriving an estimated 150,000 people of either carer's allowance or the carer element of universal credit which means that many households will be hit twice over. Plainly, this is more proof of how devalued carers are.
There may be one or two rays of light. Unpaid care was largely missing from most of the PR blurb that launched the government's independent inquiry into adult social care, but Louise Casey – the cross-bench peer leading its work – nonetheless made a point of beginning the process with conversations that involved family carers. But the surrounding political context remains grim: Westminster's musings about care still seem to myopically revolve around older people having to sell their houses to pay for places in homes, and whether a country that clearly needs as many care workers as possible should make recruiting them even more difficult.
Towards the end of his book, Davey asks a handful of questions about very different subjects. 'What would happen if we totted up unpaid carer hours and paid them the minimum wage?' he wonders. 'What would happen if we looked at families whose real crisis is poor and unaffordable housing and fixed that first? What would happen if we took the concept of a good childhood – with a right to play, a right to education, a right to be carefree – and applied it to the thousands of child carers we know exist?'
I have a couple more. As our society rapidly ages, what will happen when the majority of us start to experience life as family carers, and have to confront the fact that our responsibilities to some of our loved ones can no longer be entirely palmed off on other people? And what will that mean for an established model of politics and economics that holds that, unless we are in paid employment, we can be ignored? These will be two of the central questions of the next 10 years, and when they finally hit us, they will change everything. Davey, to his credit, seems to know that. Why do so many other politicians avert their eyes?
John Harris is a Guardian columnist