The vulnerable deserve better. (Etienne George/Sygma via Getty Images)

July 11, 2023   5 mins

Granny Rosie, as she is known to everyone, is still very much herself at the age of 92: partial to a G&T when the sun is over the yardarm, and always up for a gossip. She’s also frustrated to be in a wheelchair — she was the Hampshire Ladies Cycling Champion in 1950, a horsewoman and dog walker. She hates to “be a trouble”.

Rosie moved into our ramshackle house 25 years ago, completely independent, and a fabulous support when we had school-aged children. A decade later, my parents threw their lot in with us, too. We bought a neglected and damp Edwardian pile around the corner, which had once been a care home. As my father’s Parkinson’s threatened to become more severe, we would need ramps, grab rails, widened doorways. And I would learn how to be a carer.

“Carer” is a tricky word. It’s a noun that brings with it a hint of transaction, of imbalance. The NHS defines it as anyone who looks after someone who “cannot cope without their support”, and clarifies: “The care they give is unpaid.” This definition is all the more uncomfortable if you are caring for someone you love.

First, I was supporting my mother caring for my father; then watching over her as she negotiated life without him; finally, after my Ma died, I became Granny Rosie’s full-time “extra pair of hands”, as she puts it. Each act has been one of love, but it has also been tough and distressing. It is challenging, caring for those who once cared for you, managing the physical and sometimes mental life without a loss of dignity, the tiredness and the loss of privacy. And it is endless. Being a carer is about meeting someone else’s needs, every single day, at all hours. If you can’t be there all the time, it’s about finding someone who can — a neighbour, a relative, a friend.

Many people, finding the relentless struggle impossible, have to leave their jobs. A spike in the number of people giving up work to care for family members was reported last year — 84% of them women. Most carers talk about feeling guilty whatever they do — that terrible disappointment on a beloved father’s face when the visit is over too soon, the falsely bright goodbye from a mother who is refusing to give in. The feeling, when you are caring for someone with dementia, when they can’t even recognise your face anymore.

On top of the emotional challenges are the practical ones, the financial ones. How do you agree with siblings over whether an ageing parent needs a residential home or a paid carer? Where do you turn, when you can afford neither to leave your job nor pay someone to care for a beloved relative? When there is so little state support on offer?

Without unpaid carers, the NHS would collapse. There are 10.6 million of us in the UK, and we save the government £162 billion per year in England and Wales. (For context, in 2020-21, the NHS received an estimated £164 billion per year in funding.) Despite this, the Carer’s Allowance is only a measly £76.75 per week (up from last year’s £69.70). To qualify, you have to spend at least 35 hours a week caring for someone: a fulltime job. If an extra £7 a week seems paltry, consider the Carer’s Leave Act, which is about to come into force. It will give employees the right to take leave to provide care — unpaid — for a mere five days. But if carers withdrew their labour, the system would simply collapse. Hospital beds would be flooded, care homes would be unable to cope with the influx, the NHS would crack under the strain.

When the Dilnot Commission on Funding of Care and Support was published in 2011, one of its key recommendations was that there should be a cap placed on an individual’s contributions towards their own care. The figure was set at £35,000. The intention was to protect those who have spent their working lives paying National Insurance contributions from the sort of “extreme” care costs that would force them to sell their homes. The asset threshold for those in state-funded residential care should, it suggested, increase from £22,500 to £100,000. There should be greater integration between health and social care services, and better information for care users. The Commission was thorough, it was fair, and it achieved royal assent in 2015.

But nearly 13 years on — and despite the tough lessons taught by the pandemic — almost none of the Dilnot Commission’s key recommendations has been implemented. Cameron, May and Johnson all stalled. Theresa May changed the name of the Department of Health to the Department of Health and Social Care in 2018, as a nod to better integration. But, as in so many government departments, this one has seen a revolving door of ministers, who have made few lasting changes. Now, Britain’s care system is at breaking point. There is no fairness in who pays what; there is no plan for those who do not have children to step in and help, or those whose families are estranged or living too far away. As the NHS remains starved of funds — Rishi Sunak has just announced the “most radical” reform in NHS history: his plan to make £10 billion in savings — the situation is only worsening. In May, the Prime Minister killed off the Conservatives’ flagship social care plan.

Social care is not seen as a vote-winner. I’d hazard that this is at least partly because care is seen as a women’s issue. By the age of 46, women have a 50% chance of being a carer. Men don’t have equivalent odds until they are 57, which suggests that men mostly care for their partners, whereas women care for everyone. And though there are men actively campaigning in this field, the blunt fact is that the majority of carers, paid or unpaid, are women, and the vast majority of legislators are men. In September 2020, at the beginning of the period of local, tiered lockdowns, not a single woman attended Cobra meetings, and there was not one female nurse on the Sage Cobra team. If the Government is going to address the crisis in care, it needs to listen to those actually providing it. The trouble is we often don’t see the point in complaining. We just get on with it.

There is also a growing number of young carers looking after parents or siblings — the Children’s Society estimated in 2021 there might be as many as 800,000 carers between the ages of 5 and 17. If they have managed to stay in school, they are often alienated from their classmates because of the unpredictability of their lives. There are few advocating for this often invisible group of carers. Those that do, for instance the All-Party Parliamentary Group (APPG) on Young Carers and Young Adult Carers, have little power to effect change.

Carers are everywhere, hidden in plain sight. Most of us, even if we long for compassionate support from the Government, take on the role willingly, regardless of the consequences to ourselves. I am lucky: I didn’t have to give up my job to become a carer, but many have no choice, and find themselves pushed further to the margins of society. The current political narrative is that a valuable life is a “productive” one — one that makes the nation money. It belittles both those who give care and those who receive it. It ignores the fact that women and men who have spent their lives contributing to society deserve to be looked after, not seen as a burden, or a “trouble”.

Kate Mosse is a novelist, memoirist and broadcaster. An Extra Pair of Hands: A Story of Caring and Everyday Acts of Love was published by Profile Books last year.