The UK has an army of 5.8 million unpaid carers including one in three NHS employees. What’s being done to improve carers’ lives, and do the new moves go far enough? Journalist Jo Waters reports.
Unpaid carers contribute care to the value of £184.3 billion a year in the UK, according to latest figures from Carers UK and the Centre for Care (2024). Carers do so by looking after relatives or friends who are unable to look after themselves due to old age, ill health or because they’re disabled.
This staggering amount of money is a 29% increase on the estimate for 2011 and almost matched the NHS budget for all four UK nations, which is approximately £189bn (Carers UK and Centre for Care, 2024).
This new report (which used data from 2021/2022) consolidates findings from three earlier reports in the Centre for Care’s Valuing Carers series. These estimated the savings to the economy in England and Wales to be £162bn, with £5.8bn in Northern Ireland, and £15.9bn in Scotland.
Professor Matt Bennett who helped to write the Carers UK and Centre for Care’s new report emphasised on its launch that, without unpaid carers, the UK’s health and social care systems would ‘collapse’.
‘People are providing more hours of unpaid care than ever before, across all localities in the UK,’ Professor Bennett revealed. ‘We hope policy-makers see the urgent need to act to support unpaid carers.’
THE VALUE OF CARE
THAT UNPAID CARERS
PROVIDE IN THE UK
ALMOST MATCHES THE
NHS BUDGET FOR ALL
FOUR UK NATIONS
The need is only likely to increase as people are generally living longer. For example, according to the Joseph Rowntree Foundation (JRF), at least another 990,000 unpaid carers will be needed in the next 10 years – 400,000 of them providing care for more than 10 hours a week (JRF, 2023).
‘So now it’s not a question of if we meet that need for more carers but how,’ says JRF principal policy adviser Abby Jitendra.
THE POVERTY PROBLEM
The government seems to have woken up to the challenges that unpaid carers will face and introduced a series of measures last year (see A fairer deal?, right). But the fact remains that some 1.2 million unpaid carers live in poverty, while 400,000 – or one in 10 of them – live in deep poverty (Carers UK, 2024a). So, will the new moves be enough to lift them out of it? It seems unlikely, according to experts.
| A FAIRER DEAL? |
| The UK government enshrined a right for employees to take unpaid carer’s leave in law for the first time in the Carer’s Leave Act 2023 (Acas, 2024). This legislation gives every employee the right to a week’s unpaid leave in a 12-month period to care for a dependant parent, spouse or partner. They can also take leave to care for a person living in their household or who relies on them for care (such as an elderly neighbour) – as long as they meet the eligibility criteria. This does not, however, apply in Northern Ireland (Moynagh, 2024). The NI Department for Economy launched a consultation exercise in July 2024 which included proposals for five days statutory unpaid carer’s leave and entitlement to flexible working from day one of employment (Carers UK, 2024c). Employees who are parents can take up to 18 weeks’ unpaid leave to look after their child under separate legislation (Working Families, 2024; NI Direct, 2024). The 18 weeks is the total amount of entitlement for each child, until the child turns 18. In another positive move, the Carer’s Allowance is set to rise in April 2025 to £83.29 a week (up from £81.90) (Independent Living, 2024). Working carers will now be able to earn £196 per week and claim Carer’s Allowance – an increase of around £45 per week in comparison to the previous earnings threshold of £151. As a result, 60,000 more carers will be able to access Carer’s Allowance across the UK (Carers UK, 2024c). At the end of 2024, ministers set out the terms of reference for an independent review into overpayments for carers (Department for Work and Pensions, 2024). This followed the publication of a National Audit Office (NAO) report in December, which said debt from Carer’s Allowance overpayments had rocketed to £250m (NAO, 2024). While all these are positive moves, experts say far more needs to be offered to unpaid carers. |
More than half of working carers (56%) who took part in a survey said they could not afford to take unpaid leave (Carers UK, 2024b). Meanwhile, 78% of them said access to paid leave would help them to balance their working responsibilities with caring for a family member, friend or neighbour.
John Perryman, Carers UK’s policy and public affairs manager, explains that the charity supported the legislation introducing carers’ leave, but that paid carer’s leave is their next objective.
‘You can only claim Carer’s Allowance if you provide a minimum of 35 hours a week care and it’s one of the lowest paid benefits of its kind,’ says John.
‘There’s a whole range of challenges that comes with the eligibility criteria as well: for instance, it’s not possible to claim the full amount of Carer’s Allowance and your State Pension at the same time.
‘All this when we have estimated that carers are saving the country £184bn a year,’ John adds.
Meanwhile, the JRF calculates that unpaid carers experience an ‘average pay penalty’ of £5000 in lost earnings in the first year in which they were forced to either cut down their hours or leave the workplace (JRF, 2023). Abby from the JRF, explains that lost earnings were found to increase the longer someone has been a carer, rising to £8000 annually after six years’ providing unpaid care.
‘So, we know that there is a massive monetary impact of being a carer – which doesn’t even take into account some of the expenses of caring such as travel for taking a cared for person to hospital appointments, plus additional cooking and cleaning costs,’ says Abby.
Janet Taylor, CPHVA Executive chair and a nurse manager for children’s services at South Eastern Health and Social Care Trust in Belfast, agrees that carer’s leave needs to be paid: ‘To be honest who can afford to take unpaid leave? That’s the problem – nobody can.
‘I always say money is a good barometer of value, and I don’t think we value the people that shoulder the burden of caring and keeping everything going.’
Janet says there will always be circumstances where a week’s unpaid leave won’t be enough. ‘It can be really tough for carers to hold down a job and these people need more support,’ she stresses.
THE PERSONAL TOLL
Being an unpaid carer can also have a significant impact on a person’s physical and mental health. Statistics reveal that 60% of carers report having a long-term health condition (compared to 50% of non-carers) and that 29% of them often, or always, feel lonely (Carers UK, 2024d).
New Carers Trust (2024) research revealed that eight in 10 carers with a health condition had considered giving up their job due to lack of support from their employer. Moreover, nine in 10 (88%) said they had considered reducing their hours.
Janet believes the carer role mostly falls to women (with similar findings in the recent value report), many of whom are ‘sandwich carers’ looking after two generations – elderly parents and dependent children, for example.
‘I remember one woman when I worked as a district nurse who not only looked after her parents, but often brought along her grandchildren too, who she was also looking after,’ says Janet. ‘And she had a job in the evening which she couldn’t afford to give up. I remember thinking she was one of the real superheroes, working from 8am to 10 pm.’
Recent Office for National Statistics (ONS) analysis revealed the struggles facing sandwich carers (aged 16 to 64) with 53% unable to work at all or as much as they would like, and 31% indicating some evidence of depression or anxiety compared with 24% of all adults.
While a ‘landmark’ study last year, found that unpaid care in the UK is linked to worsening mental health for people aged 30-49 with the effects persisting for years after care starts (University College London and St George’s University of London, 2024).
Abby from the JRF says that surveys repeatedly find that things are worsening when it comes to carers feeling they can look after their own mental health. ‘Some first-person testimonies from carers are really harrowing. People feel left behind, isolated, and very alone, doing something that is obviously incredibly life giving, but doesn’t have government support alongside it.’
HOW YOU CAN HELP
Some sources of support for carers may not be obvious, and experienced CPs can point carers in the right direction, says Abby (see Resources such as NICE guidance). ‘Many [CPs] see people in their own home and are more likely to pick up on the home situation. So, they are ideally placed to help them get support or inform them about benefits.’
Examples of support available includes peer networks, community groups, and help via local carers groups. It also includes help with preparing for a carer’s assessment from a local authority to enable a carer to get more practical support and getting financial support from a local charity or trust.
‘Another issue is that sometimes people don’t identify as carers: they think they are just a daughter or a son looking after their parents or a partner, and don’t recognise their caring responsibilities in the formal sense,’ says John from Carers UK. ‘They may not realise support is available.’
‘PEOPLE FEEL LEFT BEHIND,
ISOLATED, AND VERY ALONE,
DOING SOMETHING THAT
IS OBVIOUSLY INCREDIBLY
LIFE GIVING, BUT DOESN’T
HAVE GOVERNMENT
SUPPORT ALONGSIDE IT’
School nurses may also be able to identify young carers who need support, and help to get them help. CPs can refer clients on to local support networks for carers. Janet says her NHS trust runs a carers’ forum for employees, meaning carers can support each other but also give feedback to managers and try to obtain more flexible working arrangements.
MAKING LIFE EASIER
‘When you speak to carers about what they want, they say it’s a social care system that works, Abby notes. ‘It won’t reduce the need for unpaid carers at all, but it would mean they would have more choice, and that the emotional and financial burden placed on them is less.’ Abby says that the charity also wants an overhaul of the benefits system.
Carers Trust is an umbrella body representing 131 UK care organisations, which support more than a million carers. Policy and public affairs manager Ramzi Suleiman agrees that there is a social care crisis.
‘People have to give up work because social care isn’t there to support them in their role. If the government invested more in social care, people would be able to be carers and remain in their jobs, return to work or find new employment,’ says Ramzi.
EMPLOYERS WITH A MORE
FLEXIBLE APPROACH RETAIN
EXPERIENCED STAFF WHO
MIGHT OTHERWISE LEAVE
‘There are also about a million young carers in the country and this can affect their education and their ability to fulfil their full potential.’
Ramzi says Carers Trust wants the government to overhaul Carer’s Allowance completely. ‘It was created 50 years ago for a workplace and society that no longer exists. ‘We don’t consider that it supports carers sufficiently financially, or to balance work with caring.’
Indeed, a survey of 1560 unpaid carers by Carers Trust (2022) found that carers felt let down by the government. The top three things on carers’ wish lists were more money, better support for the person they cared for and a break from providing care.
Carers Trust also wants investment for local carer’s organisations that have endured local authority funding cuts in recent few years. ‘Carer organisations have had to focus their attention on carers with the highest needs, meaning they are less able to do work that prevents that crisis in the first place.’
FLEXIBLE NEED
John from Carers UK reveals that in an earlier survey, 89% of carers said the most important thing that would have allowed them to stay in their job was a flexible line manager. Alongside that they wanted flexible working arrangements so people could work when it best suited them in a variety of different ways.
‘It’s interesting that within the NHS, whether you get paid carer’s leave varies according to which trust you work for. Some have a carer’s support network in their organisation, and some don’t – these can provide really good support for carers in the workplace.’
John says employers with a more flexible approach retain experienced staff who might otherwise leave, and also cut recruitments costs and absenteeism. ‘The energy company Centrica analysed their carer-friendly policies and found it saved them around £1.8m a year in terms of reducing unplanned absenteeism, and a further £1.3m in retention savings,’ explains John. ‘We think if this was scaled up and every employer did it, [policies like this] could save the economy more than £8bn a year [Centrica, 2024]. The potential gains are very significant.’
A Department of Health and Social Care spokesman responded to the issues outlined here, saying: ‘Helping carers is an important part of our plans to modernise the world of work, ensuring they can enjoy a good job alongside their valuable role as carers.
‘That’s why we will consider introducing paid carers’ leave and are increasing the Carer’s Allowance earnings threshold, giving unpaid carers the opportunity to earn more and still receive the government support they deserve.’
And support is needed. ‘From a trade union point of view, I’ve had to support carers who needed more flexible working arrangements, including one woman who was taking a lot of sick leave to support her mother who had severe mental health problems,’ explains Janet.
‘Once she told the trust what was happening, they were able to support her by moving her to a base site nearer her home, which meant she could pop home at lunchtime to check on her [mother], and, for a time, reduce her hours.
‘It hadn’t occurred to her that she could get carer’s leave, or that her workplace could be more accommodating. Sometimes it’s these relatively small changes that can make a big difference and keep people at work.’
CARING COUNTS
| 5.8 million unpaid carers in the UK |
| About 31% of sandwich carers (aged 16 to 24) indicate some evidence of depression or anxiety compared with 24% of all adults |
| 78% of carers say access to paid leave would help them to balance work with caring |
| 1 in 3 NHS employees is also an unpaid carer |
| 1.2 million unpaid carers live in poverty, while 400,000 – live in deep poverty |
| £184.3 billion The value of care that unpaid carers contribute a year in the UK |
‘I’VE HAD TO FIGHT EVERY STEP OF THE WAY TO KEEP MY JOB AND CARE FOR MY SON’
Jenny*, 51, manages a team of community district nurses in Derbyshire and was a single parent with two sons for 10 years. George*, now 24, has Down syndrome, is autistic and has complex medical needs, and Harry* is 22.
‘I was widowed when George was 11 and left on my own to look after the boys. I needed to keep working to keep a roof over our heads, but it was very tough,’ explains Jenny.
‘More flexibility about things like shift patterns would have made a difference to me being able to take George to his hospital appointments. I remember having a huge row with my manager as she wouldn’t let me change my shift when George was in intensive care. You feel like you’re between the devil and the deep blue sea – I needed to work and earn money to keep my family, but at the same time I needed flexibility. I felt like I was failing.
‘I had to reduce my hours in some of the jobs I was in even though I couldn’t afford to, and some managers made me feel like I should give up altogether because it was all too much – but I couldn’t do that.
‘In the last trust I worked in, I campaigned to get more carer’s leave introduced after reading that they gave two weeks’ paid leave to staff who were school governors. This was on the grounds that it was public service. I successfully argued that caring was just as much of a public service and they changed the rules.
‘I also set up a carer’s network forum for other carers working at the trust so we could all support each other. In my new job we don’t have the same rights but I’m hoping to change things and set up another carer’s forum. The trust seems very keen for us to get things moving too.
‘I’ve never been able to claim Carer’s Allowance because if you earn a penny over the threshold, it cuts off and you lose all the allowance. That needs to change, it should be more graduated like it is for universal credit.
‘The news that the government is introducing a week’s carer’s leave is good in that it gives all carers a legal right to take leave, but it’s no use to me as it’s unpaid. I couldn’t afford to take it.
‘There are so many people like me working in the NHS trying to juggle caring with holding down a job. A lot of them end up having to leave the workforce as it all gets too much, and they are usually the older, experienced and highly skilled staff. It must cost the NHS a fortune –
more flexibility about caring responsibilities might mean they retain more staff and save on recruitment costs.
Jenny adds: ‘The other thing that carer’s need is more respite care. I only get one week a year and it’s not nearly enough – even though I have now remarried – with a job and the level of caring responsibilities I have.’
*Names have been changed
| RESOURCES |
| > Help and advice for carers |
| > Locating carer services |
| > Benefits and financial support |
| > Advice and support for young carers |
| > The Mix – support for under 25s |
| > Supporting adult carers (NICE guidance) |
SHARE YOUR EXPERIENCES
Is one of your clients a carer, or/and are you a carer? How do you think life for carers can be improved? Email editor Aviva Attias aviva@communitypractitioner.co.uk
REFERENCES
Acas. (2024) Carer’s leave. See: acas.org.uk/carers-leave (accessed 19 December 2024).
Carers Trust. (2024) Eighty per cent of unpaid carers consider giving up their jobs as partnership calls for more employer support. See: carers.org/news-and-media/news/post/442-eighty-per-cent-of-unpaid-carers-consider-giving-up-their-jobs-as-partnership-calls-for-more-employer-support (accessed 19 December 2024).
Carers Trust. (2022) Pushed to the edge: Life for unpaid carers in the UK. See: bit.ly/4iJqZwr (accessed 19 December 2024).
Carers UK. (2024a) 1.2 million unpaid carers across the UK are living in poverty, with 1 in 10 of all carers in deep poverty. See: carersuk.org/press-releases/1-2-million-unpaid-carers-across-the-uk-are-living-in-poverty-with-1-in-10-of-all-carers-in-deep-poverty/ (accessed 19 December 2024).
Carers UK. (2024b) More than half of carers juggling work and care can’t afford to take unpaid Carer’s Leave. See: bit.ly/3VK3MA7 (accessed 19 December 2024).
Carers UK. (2024c) Paid Carer’s Leave consultation in Northern Ireland. See: https://www.carersuk.org/news/paid-carer-s-leave-consultation-in-northern-ireland/ (accessed 21 January 2025).
Carers UK. (2024d) Carers UK welcomes Carers Allowance earnings threshold increase in Autumn Budget. See: carersuk.org/press-releases/carers-uk-welcomes-carers-allowance-earnings-threshold-increase-in-autumn-budget/ (accessed 19 December 2024).
Carers UK. (2024e) Key facts and figures about caring. See: carersuk.org/policy-and-research/key-facts-and-figures/ (accessed 19 December 2024).
Carers UK. (2024f) Facts about carers. See: https://www.carersuk.org/media/ocxheq2c/facts-about-carers-dec-2024-final.pdf (updated 21 January 2025).
Carers UK and Centre for Care. (2024) New Report: Valuing Carers: 2021/22, the value of unpaid carers in the UK. See: https://bit.ly/4haQd5K (accessed 19 December 2024).
Carers UK. (2023) Carers UK responds to 2022 NHS Staff Survey results. See:https://www.carersuk.org/press-releases/carers-uk-responds-to-2022-nhs-staff-survey-results/ (accessed 20 January 2025).
Centrica. (2024) Supporting carers in the workplace. See: https://www.centrica.com/media/3247/centrica_carers_guide.pdf (accessed 20 January 2025).
Department for Work and Pensions. (2024) Independent Review of Carer’s Allowance overpayments: Terms of Reference. See: gov.uk/government/publications/independent-review-of-carers-allowance-overpayments-terms-of-reference (accessed 19 December 2024).
Independent Living. (2024). Carer’s Allowance in the autumn 2024 Budget from April 2025 to £83.29 a week (a rise of 1.7 per cent from £81.90). See: independentliving.co.uk/advice/carers-allowance-threshold/ (accessed 19 December 2024).
Joseph Rowntree Foundation. (2024). The future of care needs: a whole systems approach. See: jrf.org.uk/care/the-future-of-care-needs-a-whole-systems-approach#_-building-caring-systems-for-the-future (accessed 19 December 2024).
Joseph Rowntree Foundation. (2023) Carers being pushed into poverty, losing nearly £8,000 a year on average after six years of caring. See: bit.ly/3BOdz1l (accessed 19 December 2024).
Moynagh A. (2024) NI’s unpaid carers ‘being left behind’ new carer’s leave law. See: https://www.bbc.co.uk/news/uk-northern-ireland-68732508 (accessed 22 January 2025).
National Audit Office. (2024) Carer’s Allowance overpayment debt reaches £250 million. See: nao.org.uk/press-releases/carers-allowance-overpayment-debt-reaches-250-million/ (accessed 19 December 2024).
NI Direct. (2024) Parental leave.See: https://www.nidirect.gov.uk/articles/parental-leave (accessed 21 January 2025).
Office for National Statistics. (2024) Sandwich carers, UK: January 2021 to May 2023. See: ons.gov.uk/peoplepopulationandcommunity/healthandsocialcare/socialcare/bulletins/sandwichcarersuk/january2021tomay2023 (accessed 19 December 2024).
Office of Science and Technology. (2018) Unpaid Care. See: researchbriefings.files.parliament.uk/documents/POST-PN-0582/POST-PN-0582.pdf (accessed 19 December 2024).
University College London and St George’s University of London. (2024) Landmark study shows effects of being an unpaid carer. See: https://www.ucl.ac.uk/epidemiology-health-care/news/2024/may/landmark-study-shows-effects-being-unpaid-carer (accessed 19 December 2024).
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