'Care in the UK. 10 Facts Which Shock'
October 30th Update after Autumn Budget. Realities and a Recommendation
Hello, dear Reader. I’m Victoria, the author of Carer Mentor and you can read more about me and why I publish Carer Mentor here.
Updated Wednesday, October 30th, following the Autumn Budget, by the Chancellor, Rachel Reeves MP
[This article was originally written after the Autumn Budget 2023, then revised for Carers Week (June 10 - 16, 2024)—facts with reference sources.1 ]
Personal Commentary:
Unpaid carers in the UK are compensating for the infrastructure care gap in our communities to the tune of £162 billion, equivalent to a second NHS.2 Their health and well-being are impacted, but their 35 hours of unpaid caregiving are valued at less than half of the National Living Wage.
The reality is that the care ‘system’ is broken and currently capitalises on love and goodwill. It is not only a question of money and resources. It is a question of leadership, responsibility and accountability. [October 2024]
I am not an expert in policy or politics. Although I have spent time untangling these numbers, I am still not 100% sure if I’m missing something. Imagine what it must be like for a carer to try to figure this out!
Using references, I’ve laid out the facts following the Autumn Budget (see footnotes). Please review these facts to understand the real deal for unpaid carers in the UK.
If you see a mistake, or issue please let me know!
The UK & ONS Census 2021 estimates the number of unpaid carers at 5.7 million, this means around 9% of people are providing unpaid care in the UK.
Ten facts which may surprise and shock you.
Summary Table of the information below
UK Carers Allowance June 2024, this is now £81.90 for 35 hours (£2.34/hour). This is unchanged [Oct 2024]
IF Carers can work,
Previously, as of June 2024, Carers can only earn a maximum of £151 per week if they want to receive Carers Allowance. (earnings CAP). Wage + Carer’s Allowance (£81.90 + £151 = £232.9). £151 per week is 13 hours of work (National living wage is £11.44/hour until the April 2025 change).
Autumn budget Oct 30th: Unpaid carers can earn a maximum of £196 per week (£45 increase). This is equivalent to 16 hours of work, pegged to the National Living wage, which will be increased to £12.21 in April 2025.
£196 +£81.90 = £277.90 per week. This is if the unpaid carer can work to the maximum cap of £196 (16 hours) while caring for someone for 35 hours a week to receive Carers Allowance (£81.90).
“This means the potential to earn an additional £2340 from April 2025 [£45*52 weeks], ‘allowing carers to earn up to £10,192 per year [£196 *52 weeks] whilst also keeping their Carer’s Allowance.”
BUT please look beyond these veiled messages about ‘additional’ money for unpaid carers.
To keep Carers Allowance the carer needs to be caring 35 hours minimum.
35 hours of unpredictable symptoms, while being beholden to when medical appointments are scheduled, the needs, safety and risks of another person. This is currently set below National living wage (£81.90 for 35 hours of caring = £2.34/hour).
35 hours of unpredictable caring plus 16 hours of paid work (with an understanding, flexible employer) = 51 hours of doing things for others.
this 'greater potential to earn’ provides the headroom the government needs as a ‘way out’ of the Carers Allowance Overpayments Scandal.34 Here are two articles from The Guardian newspaper highlighting their 6 month investigation, the public outcry that compared these injustices to the Post Office Scandal.
[Wednesday 30th October] The Guardian has uncovered the scandal at the heart of the Department for Work and Pensions (DWP) in which thousands of carers were being forced to repay life changing sums of money, and in some cases being left with criminal records after being prosecuted for minor and unwitting breaches of carer’s allowance earnings limits.
Unpaid carer Debbie Wilman, 63, who had to repay £900 in overpayments accrued mistakenly while she juggled her part-time cleaning job with caring for her 87-year-old mother, said her immediate reaction to Reeves’s announcement was: “Wow!”
Willman, a zero-hours contract cleaner at a Wetherspoon’s pub in Stockport, Greater Manchester, said the ability to earn an extra £45 a week – or about £2,340 a year – without being penalised would “make a massive difference” to unpaid carers.
“It will be a huge help although very few carers can actually earn that amount because they don’t have the time [because of their caring responsibilities],” she said. “But it certainly takes the pressure off.”Helen Walker, chief executive at Carers UK, said: “This is a vital poverty prevention measure helping many carers, particularly women, stay in the labour market … It will help to put much needed cash into the pockets of working carers who do so much to look after their disabled, ill and older relatives.”
The change, announced by Reeves in her budget speech, is the biggest increase in the carer’s allowance earnings limit in the benefit’s 48-year history. The change will peg the carer’s allowance earnings limit to 16 hours a week at the “national living wage”.
[Wednesday 16 October] The Guardian article. ‘Minister vows to end scandal that left thousands of UK carers in debt Exclusive: Overhaul of system that imposed draconian penalties for innocent errors in benefit claims is expected.’
Draconian penalties that caused unpaid carers to rack up thousands of pounds of debt after unwittingly falling foul of benefit rules are to be overhauled, the government has announced.
The move comes six months after a Guardian investigation revealed tens of thousands of vulnerable carers were being ordered to repay hefty overpayments – and even threatened with criminal prosecution – over minor breaches of carer’s allowance earnings limits.
The secretary of state for work and pensions, Liz Kendall, said she had commissioned an “open and transparent” independent review of carer’s allowance overpayments to assess how overpayments were allowed to be accrued on such a vast scale.
Carers UK and the University of Sheffield show that unpaid carers in England and Wales contribute a staggering £445 million to the economy in England and Wales every day – that’s £162 billion per year. In 2021, this economic value of unpaid care is 29% higher than in 2011 (England & Wales)
This means that the value of unpaid care is equivalent to a second NHS in England and Wales, which in 2020/21 received an estimated £164 billion in funding5. So, what budgetary motivation is there for the government to overhaul Carers Allowance? Professor Bennett says, ‘Without unpaid Carers the healthcare system would collapse’.
Fewer carers are providing more hours of care6: a statistical analysis reveals that unpaid carers are, as individuals, providing more hours of care than they were 10 years ago. While the latest 2021 census data shows there are fewer carers in England and Wales than in 2011, the number of hours of care they provide has shot up— leading to their higher economic contribution.
NHS Funding is not the same as social care funding. Link to MIND's information 'It can sometimes be difficult to say whether a service you receive is health or social care. Healthcare is generally provided free under the NHS. Social care is provided by local authorities, who can charge for it.' Availability, access and delivery of care resources and support are limited; some call it a ‘postcode lottery’. Quality is becoming a secondary consideration. Despite increases to NHS funding over the last 10 years, increases to social care funding have not kept pace and the care system is now relying ever more heavily on unpaid carers to prop it up. Vacancies and high-volume workloads, often overstretch existing staff.
Social care is funded by a combination of local government, people paying for their own care, and sometimes both.
Social care: Local authority social services departments (SSDs) are responsible for social care in England, Wales, and Scotland. This includes commissioning publicly funded social care services, such as residential care and services for people in their own homes.
NHS: The NHS is responsible for nursing, medical, and health care. The NHS may also employ social care workers for Continuing Healthcare, which is a national guidance framework for adults with a primary health need.
The Kings Fund7 How is social care paid for?
Many people are surprised to learn that social care is not free at the point of use in the way that NHS care is. Rather, social care is funded by people paying for their own care, by local government, or often a mixture of the two. Local government budget cuts have significantly increased pressures on the social care system, resulting in one of the most difficult policy challenges of our times. In this video we give an overview of how social care is funded.
Age UK in 2022 (before the Annual Autumn Statement) published this report Age UK November 2022 ‘Why Can’t I Get care?’ In most cases, the answer to the question this report poses – ‘why can’t I get care?’ - is there simply isn’t the care to get. The severe shortages in staff and the lack of funding to pay for more or better services to provide care or respite provision have left a gaping hole in support, and often services just aren’t available. 'Applying for State-funded care is complex, long-winded and the barriers to getting an assessment, and means-tested help with your care needs, can make it feel like a battle. Even those with previous experience in the care system or who have received support from our Advice Line find it difficult to navigate. It’s no wonder people often feel the process is designed more to fob them off than to truly meet their needs.'
Providing increasing hours of unpaid care, family members have no choice but to give up work or reduce their hours to do so, also putting their physical and mental health needs to one side.
According to Carers UK, between 2010 and 2020, 4.3 million people became unpaid carers every year—12,000 people a day (Petrillo and Bennett, 2022). People aged 46-65 were the largest age group to become unpaid carers; 41% of people who became unpaid carers were in this age group (Petrillo and Bennett, 2022).
Carers UK report on caring and health ‘finds that a widespread lack of support and recognition from health and care services is severely damaging unpaid carers’ mental health. It highlights how people caring round the clock for older, disabled or seriously ill relatives do not have adequate support from statutory services that are in place to help them – leaving many steeped in thoughts of hopelessness, fear, and dread, and urgently in need of support.’
More than a quarter (27%) of unpaid carers have bad or very bad mental health, rising to 31% of those caring for more than 50 hours a week, or for over 10 years.
84% of carers whose mental health is bad or very bad have continuous low mood, 82% have feelings of hopelessness and 71% regularly feel tearful.
68% of carers with bad or very bad mental health are living with a sense of fear or dread.
More than three quarters of all carers (79%) feel stressed or anxious, half (49%) feel depressed, and half (50%) feel lonely.
65% of carers agreed that the increase in the cost of living was having a negative impact on their physical and/or mental health.
Despite feeling they are at breaking point, nearly three quarters (73%) of carers with bad or very bad mental health are continuing to provide care.
Carers UK Helpline service is available Monday to Friday, 9am-6pm on 0808 808 7777 (including bank holidays, with the exception of Easter Monday). Alternatively, you can contact our Helpline service by emailing advice@carersuk.org at any time.
They offer advice on:
benefits and financial support
your rights as a carer in the workplace
carers' assessments and how to get support in your caring role
services available to carers and the people you care for
how to complain effectively and challenge decisions.
My recommendation for new/soon to be carers
Start thinking and talking about care now. Many people are unaware of ‘how it works’ in the UK.
Define the care wishes of your loved ones, your parents, older family members, any family members who need support, and even for yourselves.
Don’t wait for a crisis to happen. Build alignment and make informed decisions together.
Define your ‘informal’ Care Team. For example, don’t assume that there will be a logical, smooth path of support actions after a ‘simple’ operation or hospital admission.
Let’s try to normalise these discussions, exhale the emotions that create discomfort and curiously explore what’s possible. Don’t underestimate your friends, neighbours, the local community and organisations in your area—talking and mapping support can help. I’m still learning too!
Be prepared and primed. Have the difficult conversations when you’re not in a crisis mode.
When you hear messages about the need to grow the economy, please be aware that more people are not returning to work because they are taking on more ‘unpaid’ caregiving, or they simply don’t have the time or energy to navigate finding/keeping a job in addition to caregiving.
When you hear people say I’ll get support when I need it or I’ll be fine. Many people ‘sleepwalk’ into caregiving situations, at the mercy of circumstances when a medical crisis occurs. What happens when a loved one cannot take care of themselves after a hospitalisation?
When you hear the government talk about the fact that ‘the NHS is broken but we can fix it together’ please remember that the NHS is NOT care in the community. Social care is separate to the NHS. I agree there needs to be reforms of the NHS primary care services and in hospitals. There ALSO needs to be significant reforms of social care.
Could there be hope over the course of this government’s term?
Wes Streeting, Health secretary says NHS cannot be turned around ‘overnight’ but vows to get service ‘back on its feet’ over course of parliament. Quote from The Guardian article October 30th:
Streeting accepted that social care reform remained a significant challenge to be tackled, admitting “you cannot fix the NHS without fixing social care”.
He declined to set a specific direction on social care in the short term, saying he hoped to try to build “a cross-party consensus” on how to find a solution. “We are also thinking about, as we build the long-term plan for social care, how best to create a degree of national consensus around the national care service in a way that we have done over the last 76 years with the National Health Service,” he said.
As our population demographics shift, there is an increasing need for health and social care reform.
Let’s see what the new Labour Government will do in addition to the Autumn Budget announced Wednesday, October 30th by the Chancellor, Rachel Reeves MP.
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Valuing Carers 2021: England and Wales Dr Maria Petrillo and Professor Matt Bennett The economic value of the support provided by unpaid carers in England and Wales is greater than ever before.
• In 2021, we estimate the economic value of the contributions made by carers in England and Wales was £162 billion per year, 29% more in real terms than 2011.
• The economic value of the contributions made by unpaid carers in England and Wales is roughly equivalent to the budget for NHS health service spending.5 5 Carers UK and Carers Wales estimate that spending on the NHS England and Wales is at least £164 billion. The budget for NHS health service spending in England was £156 billion for the 2020/21 financial year, according to research by the Kings Fund. Budget data provided by the Welsh Parliament suggests that NHS services were allocated £8 billion in 2020/21.
• The rise in the number of hours of care provided by unpaid carers has led to an increase in the economic cost of care.
Carers’ earnings limit to rise by £45 a week after allowance scandal. Guardian investigation revealed scale of penalties for unwitting breaches of carer’s allowance earnings limits
Carers UK welcomes Carers Allowance earnings threshold increase in Autumn Budget [NB. charities like Carers UK work with government to build research and change policy. They must follow strict regulations to sustain their charity status]
(Petrillo and Bennett, 2023) Economic impact of Care
The Kings Fund About Page: ‘Our vision is that the best possible health and care is available to all.’ In 1897, the then Prince of Wales, later King Edward VII, founded The King’s Fund to raise money for London’s voluntary hospitals. The work of the Fund has evolved over time in response to the changing needs of the population, but our mission – to improve health and care for all – has endured.
The money invested in the Fund more than a century ago provides a substantial proportion of our income, enabling us to maintain our independence. We are not aligned with any political, professional or any other interests.
I don’t know what is worse - to be so underpaid and undervalued in the UK it to be entirely unpaid and undervalued in the US. Do you know if the situation is better in Scandinavia? Sweden or Finland, in particular?
Excellent article. I agree with everything you have put. Trying to negotiate care is very difficult and a huge fight, often when the family of the patient are at their most vulnerable.