Carers UK Press release:

Unprecedented changes for carers as Government responds to Carer’s Allowance overpayments review recommendations

• Government has said it will reassess cases dating back to 2015.

• Where averaging of earnings payments could have been lower, Government will repay or write off debt, including where money has been repaid in full.

• Carers UK’s evidence and dossier of over 100 carers’ experiences of overpayments feel vindicated

Helen Walker, Chief Executive of Carers UK said:

“It’s a landmark day today for the carers’ movement now that the Government has responded to the Independent Review of overpayments by Liz Sayce OBE.

“The move to reassess cases and repay or write off debt in certain circumstances is unprecedented in our view, a righting of a clear wrong. It is addressing this injustice head on.

“We have raised this scandal of overpayments since 2018, repeatedly highlighting a catalogue of issues faced by carers which caused huge emotional and financial distress and immense hardship for some.

“This Government acted quickly, agreeing to a visit with Carers UK and carers within weeks of coming to power for us to present our dossier of hundreds of carers’ experiences to Ministers and now has taken decisive action to redress many of the issues outlined.

“It’s absolutely right that the Government has taken the bold move of owning up to the mistakes of the DWP, which it largely inherited from the last Government.

“Liz Sayce OBE, who led the Independent Review, has really listened to us and to unpaid carers, and delivered an incredibly detailed report.

“We also want to pay tribute to the work that the Guardian and other media outlets have done in bringing this issue to public attention.

“Of course there will be an immense amount of detail to look through and digest, but we are hopeful that this can be the start of rebuilding carers’ trust in the system and that this is a positive indication that the door is open for further change - including longer-term reforms for Carer’s Allowance to ensure it better supports unpaid carers who balance paid work alongside their caring responsibilities.”

You can read the full Independent Review report and the Government’s response here.

June 2025

Carers Week is next week (June 9 - 15). The theme is ‘Caring about Equality.’ As Helen Walker, Chief Executive of the charity Carers UK, said: “Unpaid carers are the backbone of our society, propping up fragile health and social care systems and providing essential care to friends and family who need their support. Despite carers’ huge contribution to our communities, many carers still feel undervalued and unsupported.”

However, there is a crucial backdrop to this year's campaign that demands our attention

An Ongoing Injustice: Carer's Allowance Overpayments.

This sickens me.

Facts were revealed through research and data collected by Carers UK, as well as by Patrick Butler, Social Policy Editor, and Josh Halliday, North of England Editor, of The Guardian newspaper1 .

I’ve condensed their work into a summary for absolute clarity. I’ve been following the Carers UK press releases and news pieces over the last year.

References: The Injustice of Carer's Allowance Overpayments.

You can review the references, source materials and insights in the chronological list of hyperlinked articles by clicking on this link.

Summary: Carers have been asked to repay substantial debts, often exceeding several thousand pounds, due to overpayments they received. It has happened despite the government having systems in place to flag potential overpayments. In some cases, the Department for Work and Pensions (DWP) did not act swiftly enough to prevent overpayments from accumulating. In other cases, information shared by caregivers was not acted on within the same department. Only 50% of overpayment alerts were investigated.

What is Carer's Allowance? It's a benefit for individuals who care for someone with an illness or disability for at least 35 hours per week. Currently paying £83.30 per week (2025/26), which amounts to approximately £2.38 per hour, significantly below the National Minimum Wage of £12.21 per hour.

Last year (2024/25) it was £81.90, approximately £2.34 per hour.

The Current Crisis: 144,000 carers have fallen foul of strict earnings rules. The system has created a devastating situation where unpaid carers are being pushed into debt and prosecuted for fraud by the DWP over benefit overpayments.

The 'Cliff-Edge' Problem The system operates with a severe 'cliff-edge' rule: if carers earn £1 over the weekly ‘earnings limit’ (currently £196 as of April 2025, it was £151 from April 2024 to 2025), they must repay their entire benefit.

For example, in 2024, Carer’s allowance earnings rules mean a carer who earned £1 more than the £151 weekly threshold for 52 weeks would have to pay back not £52 but £4,258.80 ( the 2024 Carer’s Allowance £81.90/week multiplied by 52)2. Those with overpayment debts over £5,000 also face potential criminal prosecution.

The Earnings Limit is based on income AFTER taxes and pension. In other words, if you are in employment, the following would be deducted from your gross weekly earnings (or gross profit if you’re self-employed) before your earnings are taken into account for Carer’s Allowance:

• Income Tax

• National Insurance

• half of any contributions to your pension

• certain business expenses and some alternative care costs3

For example, if you earn £200 a week (after tax and National Insurance have been deducted), you wouldn’t be eligible for Carer’s Allowance. However, if you paid £20 into a pension, half of the £20 could be deducted from your earnings.

Your earnings for Carer’s Allowance would then be: £200 - £10= £190. Being under the earnings limit, this would mean you would meet this condition to claim Carer’s Allowance for that week.

Systemic Failures: The DWP has admitted to checking only 50% of earnings alerts, leading to massive accumulated debts (May 9, 2024). Despite having data-matching technology since 2018, the department has consistently failed to notify carers of potential breaches. This inadequate staffing and monitoring have left many carers unaware of mounting debts until it's too late.

Bottom line, more carers are being notified of repayment debts now as the DWP processes the remaining 50% of earnings alerts that were previously unaddressed.

The Human Impact While unpaid carers save the UK economy an estimated £184 billion annually, 1.2 million of them live in poverty, with 400,000 in deep poverty4. The situation has forced many to reduce working hours or leave employment entirely. Recent welfare reforms are expected to exacerbate the problem, with 150,000 people set to lose their carers' benefits by 2029/30, resulting in a reduction of £500 million.

Structural failings are creating inhumane and unnecessary stress for carers in the most vulnerable situations.

This is adding more insult to injury, considering the delay in social care reforms to 20285

The crisis has drawn parallels to the Post Office scandal, with carers being criminalised for systemic failures rather than deliberate fraud.

An ongoing Guardian investigation has revealed how draconian and rigidly enforced rules, coupled with a failure by the Department for Work and Pensions (DWP) to notify carers of overpayment, have meant carers have run up debts of up to £20,000, causing public outrage and leading to comparisons with the Post Office scandal. - Patrick Butler, Social Policy Editor and Josh Halliday North of England Editor.67

What is the Government doing?

An Independent Review was established in October 2024 and is being led by Disability policy expert Liz Sayce OBE. It’s due to report in summer 2025. It published its ‘terms of reference’ on December 9th 2024. The review is examining how earnings-related overpayments have occurred and identifying potential changes that can be made.

There was some initial controversy when a DWP whistleblower, Enrico La Rocca, was initially blocked from giving evidence to the review; however, the DWP later confirmed that staff would be encouraged to submit evidence.

Carers UK’s report and recommendations

Click here or the image to read the report. Lloyds Bank Foundation England & Wales provided a grant to Carers UK to work to address the issue of overpayments on Carer’s Allowance and the earnings threshold.

The three-year project examines systems and processes related to claiming Carer’s Allowance that could be improved. It also aims to enhance carers’ and professionals’ knowledge of overpayments and the earnings limit, to address issues earlier.

Some of the Key themes shared by Carers in this report:

• Many carers did not understand the rules around the earnings limit

• The reasons why carers had gone over the earnings limit varied

• Overpayments often came as a shock to carers. They had a negative impact on carers’ mental health, and caused carers’ financial problems. Some carers decided to stop claiming Carer’s Allowance even when they were entitled to it

• Many carers said that the Carer’s Allowance earnings limit affected their employment situation: cutting back on hours or giving up work completely

• Carers raised concerns about communicating with the DWP: a lack of empathy and understanding, and time consuming processes

• Carers also raised concerns about DWP processes

  • Delays between when the carer went over the earnings limit and when the DWP contacted them.

  • DWP not acting on the information carers had provided

  • Information not shared between different departments within the DWP

  • Averaging of earnings. Carers with irregular incomes felt that their pay should be averaged over a longer period of time so that their Carer’s Allowance was not taken away as a result of an infrequent payment. Many carers were under the impression that their pay would be averaged over the year as happens for self-employed carers.

I recommend reading the Carers UK Report in full to fully grasp the impact this is having on carers.

An estimated 2.8 million carers in the UK are in paid employment8.

How many more of the 2.8 million carers will receive letters from the DWP?

The worries, paperwork, and uncertainties may be too much for any carer to navigate while working. Some may decide to stop receiving Carer’s Allowance or stop working.

If you or anyone you know has an overpayment of Carers Allowance, seek support information from Carers UK or via their helpline at 0808 808 7777 from Monday to Friday, 9am – 6pm (excluding Bank Holidays), or you can contact them by email (advice@carersuk.org).

Inequalities and injustices continue.

Some people, news articles, and parliament have raised questions about why more individuals, particularly those over 50 years old, are leaving work. I don’t.

I applaud the work of Patrick Butler and Josh Halliday: Guardian journalists win Paul Foot award for carer’s allowance coverage. (May 20, 2025)

Please ‘❤️’ LIKE the article to raise awareness of this to others

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When we’re listening to the UK’s Autumn Budget on November 26, I urge everyone to consider the news from an unpaid carer’s perspective, and how the welfare state, and ‘economic inactivity’ are being framed.

There’s an ageing population, people living longer, an exhausted, overburdened, but under-resourced NHS, and social care reforms are not yet in place. These are the facts that unpaid carers are very familiar with, and yet news reports and the general public wonder why more people are becoming “economically inactive.”

Surely people know that more of the working population are leaving work or reducing their working hours because they need to care for their parents, and/or other friends or family who are sick or disabled of any age.

Ask an unpaid carer about social care or paid carer support, and they’ll tell you about how the good ones are over-worked, underpaid and can only do a short call, e.g. 15 minutes, and can’t promise to get to you at a specific time. You don’t want to hear about the bad ones.

The over-40s are leaving/reducing work at the time when they’re considered to be at their most productive, because they’re using their time, and mental labour to care for others. This includes

• the direct hands-on tending to needs,

• the behind-the-scenes facilitation, project managing, and interfacing with

  • the fragmented, mainly digital, health and social care systems.

  • all things related to home, finances, food and necessities

• as well as standing at the threshold between loved ones and everyone else: the buffer, medical translator, explainer of needs and wishes, defender and advocate for loved ones who cannot speak for themselves.

So, when I first saw a BBC news report (November 5th), I felt I had to dig into the ‘Keep Britain Working’ independent report and its analyses.

I was ardently hoping that somewhere in the ‘system dynamics’ there would be some reference to Carers UK's State of Caring report (October 2025) and that the voices of 5.8 million unpaid carers in the UK, would be represented.

We can work more productively; be focused and committed, when we know our loved ones are safe and cared for. When work policies enable us to take a family member to a medical appointments without repercussions. Or flexible work cultures enable us to work remotely, or care for a loved one post-operatively,

Not addressing the journey that leads people to become full time unpaid carers, or how to enable them to stay/return to work, may force more people to choose family needs over work. Even in financially challenging times, and especially when the NHS plans involve a shift from hospitals to the community, while systems are still fragmented.

An Unpaid Carer’s Context:

Working full-time for an employer, an organisation, or yourself, while you’re worried and caring for someone you love, is stressful. Orchestrating caregiving in a fragmented care system compounds the burden and pressure on individuals.

Caregiving is mental and emotional labour intertwined with project management, where you have limited or no decision-making power! Navigating your own vulnerabilities through this is one thing; coaching and managing those worries and vulnerabilities of a sick or frail loved one is something else.

Five evidence-based insights:

1. Carers are reducing their working hours or leaving work. 1

2. The intensity of caregiving has increased. This is significant because of the devastating impact that substantial unpaid care of over 20 hours per week can have on carers’ health, well-being and ability to juggle work and care.2

3. The number of unpaid carers will rise because the health and social care system remains fragmented and under severe strain as it prepares for a major shift from hospital to community care. Plus, social care reforms have been delayed3

4. The increased need for care has outpaced infrastructure investments and policy reforms. 4

The BBC news report on November 5th, 2025

Nov 5th The BBC reported: “The number of sick and disabled people out of work is putting the UK at risk of an “economic inactivity crisis” that threatens the country’s prosperity, according to a new report.
There were 800,000 more people out of work now than in 2019 due to health conditions, costing employers £85bn a year, according to the review by former John Lewis boss Sir Charlie Mayfield.
The problem could worsen without intervention, but Sir Charlie Mayfield, who will lead a taskforce aimed at helping people return to work, said this was “not inevitable”.

The BBC news article was based on the independent ‘Keep Britain Working’ Report published that day.

Sir Charlie Mayfield is the Lead Reviewer: the report and letter to the Secretaries of State for the Department for Work and Pensions, and Department for Business and Trade

Why is the focus only on the sick and disabled as the economically inactive?

Employer policies, inclusive work environments and reasons that lead anyone to becoming economically inactive, require consideration.

The ‘purpose and scope’ of the review, as set out in the Terms of Reference on the one hand requests “a discovery phase, with the aim of understanding the characteristics and drivers of rising levels of inactivity and ill health”, but on the other hand precludes a focus on disability and ill health, to the exclusion of other drivers of inacitivity that may be positively impacted by new policies and initiatives by employers and the government.

My questions and the answers I’ve drawn from the reports:

1. Where are the unpaid carers in the Keep Britain Working Report, and how are they being included, if at all, in the recommendations?

   1. Unpaid carers are named in the report, but only as a subgroup:

      Informal caregiving: £37 billion lost output due to “working-age carers caring for working-age sick” (Table 5: Summary of the Cost of working-age ill health and disability that prevents work (Billions)) Footnote 6

      My hypothesis: The task force's work and recommendations are solely focused on ‘the working age sick’. Using the working assumption that enabling the working-age sick to return to work will, in turn, result in a possible £37 billion economic input from informal caregivers returning to work, too.

   2. Unpaid carers who are caring for the sick or elderly (non-working-age sick) are not a focus of this analysis, despite the Carers UK State of Caring report highlighting the increasing number of people leaving/reducing work and the increased intensity of caregiving.

   3. Unpaid carers, and their reasons for reducing hours or leaving work, are omitted in the ‘System Dynamics’ analysis on page 18 of the report. There is an opportunity for the review and employers to consider preventing further loss of unpaid carers from becoming economically inactive

2. Does the report assess the impact of delaying social care reforms on the rising numbers of ‘economically inactive’ people? Not that I can see

3. Does the report leverage the State of Caring Report (October 2025) by Carers UK to identify the reasons why the working population may choose to reduce their hours to care for loved ones? (Especially in light of the new healthcare plans to shift care from hospitals to the community?) Not that I can see

4. How will the task force include insights from unpaid carers and carer organisations to prevent further loss of ‘economically active’ people from the workforce? Unknown. My interpretation of the report is that the focus will not be on unpaid carers but on people of working age who are sick, ill, or disabled. The assumption being that if these people return to work, unpaid carers who are currently caring for them, can also work.

To answer my questions, I followed the data down a rabbit hole

I’ve done my best to decipher the data as a member of the public and an unpaid carer interested in understanding how this report could offer future opportunities to unpaid carers.

1. Keep Britain Working Review Discovery Document (March 2025)

The report uses ONS data from 2024, but it focuses on 3 million people who are ‘Not in work, and not looking for a job due to a health condition’.

Carers (1.7m) are highlighted here but seem to be deprioritised in the analysis as ‘Inactive-other’ because they are ‘Not in work and not looking for work for other reasons’5 (see the footnote)

2. Independent report Keep Britain Working: Final report Published 5 November 2025

The report focuses on these 3 million people and suggests that the

‘wider impact and burden on society is equally unsustainable.’

Why focus only on the 3 million who are sick? There are potential opportunities of supporting unpaid carers and preventing them from reducing their hours/leaving work.

Moreover, while unpaid carers are statistically accounted for, I could only find this reference to them as a subgroup: ‘unpaid carers – many of working age – add hidden costs in lost productivity and foregone earnings through stopping work to care for those with health conditions.” (see below)

Impact on Society

48. The wider impact and burden on society is equally unsustainable. Economic inactivity caused by ill-health that prevents work is currently estimated to be costing the UK £212 billion a year^{[footnote 29]} and rising, equivalent to around 7% of GDP, or nearly 70% of the total income tax we pay in the UK.^{[footnote 30]}

Summary of the current cost of ill-health for society:

• £132 billion – Lost output due to working-age ill-health that prevents work

• £37 billion – Lost output from unpaid carers looking after the sick

• £2 billion – Additional NHS costs of someone becoming economically inactive

• £45 billion – Health-related benefits, forecast to rise another £20 billion by 2030^{[footnote 31]}

49. These costs create substantial pressures across the system:

• the NHS is forced into a reactive role – treating illness rather than supporting prevention. The OBR estimates inactivity adds measurable extra burden per person to NHS costs

• rising benefit spend risks making the UK one of the highest spenders on health-related benefits among advanced economies^{[footnote 32]}

• unpaid carers – many of working age – add hidden costs in lost productivity and foregone earnings through stopping work to care for those with health conditions^{[footnote 33]}

3. Where does this £37 billion come from? Department for Work and Pensions. Official Statistics The cost of working age ill-health and disability that prevents work Published 18 March 2025 calculated the lost output of what they’ve called a cost element of ‘informal caregiving’. Described as “Lost output due to working age carers caring for working age sick” 6 (see the footnote below)

Conclusion:

Unpaid carers are not the focus of the Keep Britain Working task force. They may be seen as being indirectly addressed in enabling working-age sick and economically inactive people to return to work.

Unpaid carers who are considered in the report: those who in 2022 were economically inactive, caring for people of working age. The carers, who ‘want to return to work but their caring responsibilities prevent them from working.’ Estimated to account for £37 billion in ‘lost output.’

The journey of unpaid carers to becoming economically inactive or returning to work hasn’t been addressed—yet?

Recommendation:

I urge Carers UK, Carers Trust, Mobilise and other unpaid carer-related organisations to elevate the findings and recommendations of the Carers UK State of Caring Report (October 2025) with the Keep Britain Working Taskforce.

A personal note:

I’m not an economist or social policy expert. It’s taken me hours to decipher the data and the report. I’ve done so because I believe that economic growth and the increasing numbers of unpaid carers in the UK are interrelated issues.

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Footnotes:

I have included direct references, content and information from the publicly available reports, publications and Labour Force Survey. I’m not aware of any restrictions to reproducing this data here.

1

Carers UK State of Caring Report October 2025 (n= 10’539)[Executive summary page 8. ]

“Carers often find that as their caring responsibilities increase, they find it more difficult to combine caring with paid employment, and many have given up work or reduced their working hours. 35% of carers who are employees have reduced their working hours, and a fifth (20%) of carers who are employees have moved from working full-time to working part-time.

Giving up work to care or reducing working hours can make it harder for carers to save for the future or pay into a pension. Three quarters (74%) of carers said they are worried about the impact that their caring role will have on their finances in the future, and a quarter of carers (24%) said they had cut back on, paused, or stopped paying into a pension because of the financial costs of care.”

5

Keep Britain Working Review Discovery Document (March 2025)

The report uses ONS data from 2024, but it focuses on 3 million people who are ‘Not in work, and not looking for a job due to a health condition’. Carers (1.7m) are highlighted here but seem to be disregarded as ‘Inactive-other’ because they are ‘Not in work and not looking for work for other reasons’

Page 10 Exhibit 3 Source: Labour Force Survey, Office for National Statistics

Page 12 Exhibit 5 Source: Labour Force Survey:

Page 12 point 28

28. There are now around 8.7 million people across the working-age population who report having a work-limiting health condition. There are three key take aways from these trends in the context of this review:

i. More people are in work with a work-limiting health condition than are economically inactive because of one. We have seen a significant growth in the numbers of people managing these conditions in the workforce.

ii. Based on these figures it is likely employers already have members of their workforce who are living and working with a work-limiting health condition. Health and disability are just as much an in-work issue as they are an economic inactivity issue.

iii. Of the 4.2 million economically inactive individuals, only 2.9 million report being economically inactive for sickness reasons. The remaining 1.3 million give their reason for economic inactivity as being carers, students or early retirees living with health conditions. This highlights how improving the way the workplace supports individuals to manage their health, and addresses the barriers faced by disabled people, could help people in other categories of economic inactivity to return to work.

Page 18 System Dynamics

Prevention, of both health and disability challenges arising in the first place and of people falling out of work, is very likely to be better than ‘cure’.

It is therefore a priority for the review to consider measures and initiatives to prevent people from falling out of work, protecting their health and ensuring support is readily available.

6

Department for Work and Pensions. Official Statistics The cost of working age ill-health and disability that prevents work Published 18 March 2025

A core part of the estimates for this work is the Gross Value Added (GVA) per person. GVA is measured as an average (mean) value per filled job and can be thought of as the individual’s job contribution to Gross Domestic Product (GDP). It encompasses more than the wage as an output, quantifying the wider value the individual brings to a business. It is reasonable to assume that the value of an individual’s output should exceed their wage, considering employment costs and a profit margin.

The GVA output per worker was £68,818 for the UK in 2022^{[footnote 3]}, ^{[footnote 4]}. This analysis also estimated a GVA figure for disabled people that may be more appropriate to apply to individuals with known ill-health. The GVA for a disabled worker is estimated for this analysis through multiplying mean GVA for all workers, by the ratio of median hourly pay of disabled workers^{[footnote 5]} to mean hourly pay for all workers (excluding overtime)^{[footnote 6]}, ^{[footnote 7]}. Using this, the estimated median annual GVA for a disabled person was £46,513 in 2022.

It is worth noting that GVA varies from region to region^{[footnote 8]}, and that ill-health that relates to work also has regional differences^{[footnote 9]}. However, this adds a complexity to the analysis that is beyond the scope of this analysis as regional splits are not available for the wide range of data required.

Lost production due to informal caring

It is estimated that there were 5 million unpaid carers in the UK in 2022^{[footnote 14]}. Some of these carers will be working age, looking after someone who is working age, and out of work due to these unpaid caring responsibilities, and thus meet the definition of ‘cost of working age ill-health that prevents work’. In this instance it is the carer who is prevented from working, rather than the individual with the ill-health/health condition. The population of carers relevant to the economic cost of working age ill-health are: i) carers of working age who are out of work; ii) caring for people of working age; who iii) would work if they were not carers and whose caring responsibilities prevent them working.

All these conditions must be met to be relevant for the present estimations.

The calculation is based on the number of working age unpaid carers that are currently unemployed, retired or otherwise economically inactive^{[footnote 15]}. The NHS Digital survey (2023 to 2024) can be used to determine the distribution of working age carers caring for someone of working age^{[footnote 16]}, and the distribution of out-of-work working age carers who are not in employment, because of their caring responsibilities, rather other reasons, such as retirement^{[footnote 17]}, ^{[footnote 18]}. Taking these distributions, around 550,000 carers were out of work due to working age ill-health (see Table 1).

The 2016 paper produced a figure of £1 billion. The methodology used in this work has had slight refinement, so the difference is in part due to this. The 2016 paper took the percentage of the whole carers population who looked after someone who is working age, rather than the percentage of working age carers who looked after someone who is working age. This was also the case for the split of carers who are out of work due to their caring responsibilities. The key driver of the increase since the 2016 estimates is that the 2016 method assumed that only 5% of those being cared for would likely return to work, and that 95% of carers who fit the criteria would never be able to return to work as they would have to look after someone. The cost was therefore reduced by 95%. However, as there is still a cost to the care-giver and these estimates seek to consider all costs not just those which could be saved in practice, and as the informal care giver could enter employment if caring needs were addressed through social care, this analysis does not exclude any informal care givers that meet the criteria set out above.

This article provides an introduction to the younger carers in the UK and to the work of organisations such as Carers Trust, which aim to offer them respite and advice.

A Short Film by Young Carers (November 2023)

Young carers and young adult carers1 who provide care to a parent or family member face several challenges compared to their peers, primarily impacting their mental and physical health, educational attainment, and social life.

If you know a child/young adult who is caring for a parent or family member, these links may be helpful to them.

• NHS Help for young carers

• Carers Trust Getting support if you are a young carer or young adult carer

• Samaritans. They're there 24 hours a day, 365 days a year, wherever you live in the UK. You can call Samaritans on Freephone: 116 123, 24 hours a day, seven days a week or visit the website for more ways to get in touch. Contact Samaritans Cymru for a Welsh language service.

• MIND Crisis and Listening services If you need to talk right now, there are many helplines staffed by trained people ready to listen. They won't judge you, and could help you make sense of what you're feeling.

• Young Minds offers information about coping with mental health issues, feelings, symptoms and conditions, wherever you live in the UK. Services include a free 24-hour crisis messenger if you are experiencing a mental health crisis and a Parents Helpline for parents across the UK. Find out more on the Young Minds' website.

• UK Citizens Advice website

• If you know of young carer organisations in the US, please share them in the comments. Thank you.

While the exact number of young carers in the UK is unknown, recent evidence suggests there could be two young carers in every class.

Evidence from the Sutton Trust highlights that young carers are more likely to live in areas of high deprivation, and that many high-potential, disadvantaged young people are three times more likely to be young carers.

This data also indicates that young carers are four times more likely than their peers to live in a single-parent household, often trying to operate within a much lower household income than coupled households and with less access to savings. Not only is it clear that the talent of these children and young people are not being fully realised, but they face further inequalities in terms of household income and potential over-dependence on an inadequate social security system. This can permanently limit their social mobility as well as the physical and mental toll that caring for a family member often presents. Like other age groups of carers, young carers quickly encounter that society and the systems and services we have built do not value unpaid care work. (July 3, 2023) Society is closing its eyes to young carer poverty - we must do better Blog by Sheena McMullen, Action for Children and Carer Poverty Commission Steering Group member.

Young carers experience significant inequalities compared to their peers, affecting their education, health, and overall well-being, and thus their prospects. As young carers may not recognise themselves as carers they don’t actively seek support. Available support by trained staff in schools or social care system is a ‘postcode lottery’, inconsistent.

Specific Young Carers’ Challenges:

• Mental Health: Young carers are more likely to experience anxiety, depression, and other mental health issues due to the stress of caring.2 34

• Educational Attainment: Young carers are more likely to be absent from school5, have lower educational attainment, and face challenges with studying and focusing due to caring responsibilities. 6

• Social Participation: Young carers may miss out on social activities and friendships due to their caring roles, leading to feelings of isolation and loneliness. 7

• Lack of Breaks and Respite: Young carers often lack the time and support they need to have breaks from their caring role and engage in leisure activities.

• Financial Inequality: Families with young carers may experience lower incomes, leading to financial stress and potentially impacting a young carer's ability to access resources and opportunities 89

• Lack of Understanding: Young carers may struggle to get understanding from friends, family, or teachers regarding their caring responsibilities. Some young carers may experience bullying due to their caring role or perceived differences. 10

• Lack of Information and Recognition: Like adult carers, young carers feel undervalued and marginalised. Underreported numbers of carers, and lower demand for services and support leads to an underestimation of resources. To the untrained eye, young carers are misunderstood children/young adults and their potential goes unrealised.

Four Challenges Young Carers Face By MCR Pathways:

When you read more about Carers’ Stories on the Carers Trust Website, you’ll see the depth, diversity and intensity of the caring that they do.

As you may expect, these young people have had to mature much younger than their peers. What I found slightly incongruous was to hear/read the mature, insightful self-reflections that were being made by these children.

Supporting young carers requires a multi-faceted, whole-family approach, including mental health support, educational assistance, respite care, and fostering connections with peers and the community.

…And it all starts with Recognition, Identification and Appreciation of Young Carers

(March 2024). Young Carers Action Week “Fair Futures for Young Carers" 2024 Sharan’s Story

(Timestamp 3.12) I think a fair future for young carers means, where people recognise, education, and employment recognise what a young carer is and how they can support them because without a Fair Future these carers, they're not going to be interested in pursuing further education, they're not going to be interested in pursuing employment, they're not going to be interested in any training opportunities.

The Carers Trust offers practical advice and support:

• Carers Trust partners with The Children's Society to run the Young Carers in Schools programme helping schools spot hidden young carers, understand their needs, and put support in place that can transform lives.

• The Trust coordinates the Young Carers Alliance (200+ organizations, 700+ individuals) and Scottish Young Carers Services Alliance (51 services).

• It also provides secretariat support to parliamentary groups for young carers in both England and Scotland.

• Carers Trust provides opportunities for young adult carers to develop aspirations and goals through our Young Carers’ Futures programme.

• Share information about financial advice, support and information about benefits

• Know Your Rights: A Guide for Young Carers, designed to support young carers and young adult carers (25 and under) in understanding and accessing their rights, benefits, and the help they’re entitled to.

Commentary

I was struck by the title of this report: (March 2023) Being a young carer is not a choice. It’s just what we do. The voices and experiences of young carers and adult carers from across Wales

In the Forward of the report Ollie Mallin (17 years old) shares this

I care for my younger brother, who has many complex additional needs. I’ve cared for him since I was five. I wouldn’t say that my caring role impacts my life; I would say that it is my life. However, caring does put a strain on other parts of my life. School has always been hard for me, teachers haven’t always understood my experience and my caring role has made it very hard for me to stay up-to-date with coursework or to focus in lessons.

There’s no judgment. Caring is part of what he does and it’s a role. While he acknowledges that he’s a carer, he also recognises that there is more to his life beyond this, and that’s where he needs help.

There are some great initiatives that have been started in schools and universities, to spot young carers and offer support.

Where I think we can all do more is being an active listener to any young person who may be caring for someone who has a chronically ill or disabled family member, parent, grandparent or sibling.

For example, MCR Pathways has set up a mentoring system in the UK to offer consistent support for young people.

Let’s take note of the fears young carers may have (see above) and support them based on their needs, not what we think they need.

Do you know a young carer?

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1. the people, organisations and charities who have raised awareness about the Carers Allowance overpayments.

2. chronological list of references, outlining the evolution of news and information as it was revealed to the public.

Key investigators and stakeholders who are working to raise awareness of the issues and impact of the Carers Allowance Overpayments.

The National Audit Office: “The National Audit Office (NAO) is the UK’s independent public spending watchdog. We support Parliament in holding the government to account and we help improve public services through our high-quality audits. We are independent of government and the civil service.”

Carers UK is the “leading national charity for unpaid carers. We support, advocate for, champion and connect carers across the UK, so that no one has to care alone.”

Emily Holzhausen, Director of Policy and Public Affairs Carers UK. CBE OBE Charity Director Emily Holzhausen awarded CBE in the King’s Birthday Honours list

The Guardian Newspaper Editors: Patrick Butler, Social Policy Editor and Josh Halliday North of England Editor

May 20, 2025 “Guardian journalists win Paul Foot award for carer’s allowance coverage. Patrick Butler and Josh Halliday honoured for their coverage of ‘enraging and heartbreaking’ DWP scandal”

The Guardian Newspaper: “Guardian Media Group is a global news organisation that delivers fearless, investigative journalism - giving a voice to the powerless and holding power to account. Our independent ownership structure means we are entirely free from political and commercial influence. Only our values determine the stories we choose to cover – relentlessly and courageously.”

Chronological list of references and source material:

1. 2019 A National Audit Office (NAO) report in 2019 found that DWP staffing levels in the past were not adequate to deal with overpayments quickly enough. By National Audit Office

2. 26 October 2022 Is worsening health leading to more older workers quitting work, driving up rates of economic inactivity? By Bee Boileau Jonathan Cribb.

   We examine labour market trends for older people to see if poorer health is driving down employment rates and causing a rise in economic inactivity

   Summary When looking at only the cross-sectional data, it is tempting to conclude that deteriorating health amongst the older population has been the key reason for higher levels of economic inactivity and lower levels of employment. A closer look at the data suggests that in fact there seem to be two distinct issues at stake: increasing levels of ill-health amongst the older non-working population (which is concerning as an issue in its own right), and increased levels of inactivity driven in large part by people leaving work for non-health related reasons – in particular because they have decided to retire.

3. 18 May 2023 Why aren’t older people returning to work and what can firms do to tackle this?

   As a parliamentary report into economic inactivity delves into the reasons the over 50s exit the labour market for good, Luke Price suggests ways businesses and government can encourage them back into employment. by Luke Price, Senior Research and Policy Manager at the Centre for Ageing Better,

4. 24 May 2023 Why aren’t older workers returning to work? The reasons for the rise in older workers exiting the labour market are complex but there are solutions available.

   The report highlights how the rise in economic inactivity is mostly driven by older workers retiring, many of whom are relatively financially secure and have no plans to return. It also digs down into the complex relationship between economic inactivity, health and age where poor health is not necessarily causing more older people to leave the labour market but remains a fundamental reason why people can struggle to re-engage with work. Caring responsibilities can make juggling work and personal commitments hard, meaning that some older people, especially older women, leave work and don’t return. More flexible working opportunities being offered by employers could help both retain current employees with caring responsibilities and entice those who are out of work to return.

5. March 21 2024 Unpaid carers in employment forced to reduce their working hours for the fifth consecutive year as Carer Poverty Coalition publishes its demands of government. By Carers UK

6. April 7 2024 Who are unpaid carers, and why have some had to repay large sums to UK government? By Patrick Butler, Social Policy Editor. The Guardian

7. April 7 2024 ‘DWP are the real criminals’: carer in tatters after ‘brutal’ fraud prosecution Vivienne Groom was threatened with a prison term despite a call-handler saying she did not need to declare her 16-hour a week job By Josh Halliday North of England Editor The Guardian

8. April 7 2024 Analysis: Why are so many carers being taken to court for benefit fraud? By Patrick Butler Social Policy Editor. The Guardian

9. April 22 2024 MPs call for carer’s allowance review as numbers overpaid soars. Figures show 34,500 people incurred overpayments last year after falling foul of rules, landing many with huge debts by Patrick Butler Social Policy Editor. The Guardian

10. April 24 2024 Two-thirds of carers with earnings-related overpayments of more than £2,500 could have had been notified sooner if the DWP had had sufficient staff in place. More recently, DWP stated in a response to a Parliamentary Question that only around half of the number of overpayments flagged by the Verified Earning and Pension (VEP) system had been reviewed by the DWP. By Questions Statements. The Parliament

11. April 25 2024 Hailed as a hero and then sacked: the carer’s allowance whistleblower Enrico La Rocca helped expose profound failures but less than a year later was dismissed by the DWP – and then later rehired by Patrick Butler Social Policy Editor. The Guardian

12. The Carers Allowance 2024/2025 Tax year, when the facts were revealed

    1. On an assumption, you have the emotional capacity and can find a way for your loved one to be okay whilst you’re away.

    2. IF you care for 35 hours, you’re eligible to get Carers Allowance (£81.90) and can work to receive up to £151.

    3. IF you go over £151 (after tax expenses), you forfeit one hundred per cent of the £81.90.

    4. BUT this ‘debt’ to the government’s Department of Work and Pensions stacks up over time because you’re not informed.

    5. The carers who have large debts are pursued for prosecution

13. Carers Allowance and understanding the earnings limit

    Known as the main benefit for carers, Carer’s Allowance is currently £83.30 per week (2025/26).

    When looking to apply for Carer’s Allowance, you first need to check if you meet the conditions to claim it. One of the conditions that can cause a bit of confusion is the earnings limit. You need to ensure that you don’t earn more than £196 per week (from 7 April 2025).

14. May 9 2024 DWP’s unchecked database leaves tens of thousands of carers at risk of debt About 50% of earnings ‘alerts’ for carer’s allowance overpayments not looked at by staff, figures reveal by Patrick Butler Social Policy Editor. The Guardian

    1. Tens of thousands of unpaid carers are at risk of debt and criminal prosecution because their cases are lying unchecked on a government “alert” database of people being overpaid benefits, according to new figures.

    2. Officials are aware of the mounting number of instances where UK carers are at risk of racking up overpayments that can in some cases lead to crippling debt, but for the past five years have chosen not to investigate all cases..

15. May 27 2024 ‘No one would accept blame’: Carers highlight DWP failures over debt crisis Carers asked to repay sums as high as £20k say officials did not share eligibility information between departments By Patrick Butler Social Policy Editor. The Guardian

Ferguson was baffled: on his mother’s behalf, he had told the DWP about her hospital stay at the time, and (luckily) he had a letter from attendance allowance that confirmed her claim would be unchanged. The carer’s allowance unit was unmoved: as far as it was concerned, he hadn’t told them, so he had to repay the money.

He pointed out the two benefits were linked – he qualified for carer’s allowance only because his mother received attendance allowance. Was it not reasonable to expect the two DWP offices to share information – or even admit their own blunder had caused the overpayment?

“I realised they were basically asking me to compensate for their own systematic errors,” said Ferguson. “It was like the Post Office scandal. No one was willing to accept the blame for what was their mistake; it had to be the claimant who was at fault. I would end up being thrown under the bus as a fall guy.”

Ferguson challenged the overpayment at a Glasgow social security tribunal in March, and won. “It should never have got to a tribunal but the DWP was determined not to concede they were wrong. I thought they would have backed off well before they were made to look foolish in front of a judge,” he said.

11. July 2024. Carer's Allowance Overpayments. Carers UK’s report and recommendations By Carers UK

12. August 2024 Juggling work and care – a growing issue

    An estimated 2.8 million carers in the UK who are in paid employment.

    The UK economy increasingly relies on workers who also provide unpaid care to family and friends ('working carers'). Without adequate support, these carers struggle to balance work and care responsibilities, impacting their wellbeing and job retention. Society must evolve to better support this growing population of working carers.

    

    There are nearly 2.5 million carers in employment (excluding full-time students)2 in England and Wales, according to the recent ONS Census 2021 – 9% of the total number of people in employment. Of those, 2 million are employees, and 445,000 are selfemployed. In Scotland, a further 268,000 carers are in employment (of which 234,000 are employees, and 34,000 are self-employed. In Northern Ireland, 125,000 carers are working either full-time (81,000) or part-time (44,000). Combined, over 2.8 million carers are juggling work and care across the UK.

13. August 22 ,2024 The future of care needs: a whole systems approach This new approach brings together action to improve paid care with support for unpaid carers and social networks. Written by: Abby Jitendra, Taha Bokhari

14. September 12 2024 DWP waives £1,300 penalty for unpaid carer threatened with fraud prosecution Clemency Jacques is one of 134,500 people repaying £251m in carer’s allowance overpayments By Patrick Butler Social Policy Editor. The Guardian

15. October 30, 2024 In the Autumn Budget 2024, the earnings limit for Carer's Allowance increased from £151 to £196 per week from April 2025, a rise of £45, “allowing” working carers to earn more without losing their benefit entitlement. This conveniently sidesteps the 'Cliffedge' of £151. This does not help carers being pursued for criminal prosecution By Carers UK

16. November 14, 2024 By Patrick Butler Social Policy Editor. The Guardian

    1. Timeline: Inertia, denial and failure: timeline of the UK carer’s allowance scandal. Promises were made to fix the problem over a decade yet nothing changed – meanwhile carers continue to suffer.

    2. More than 250 UK unpaid carers risk prosecution over benefit overpayments Exclusive: Campaigners urge ministers to intervene to prevent cruel punishments over carer’s allowance

17. November 2024, Valuing Carers 2021/22: the value of unpaid care in the UK, Dr Maria Petrillo, Dr Jingwen Zhang, Professor Matt Bennett.

    This research report highlights the incredible increasing economic value of unpaid care across the four nations of the United Kingdom (UK). Unpaid carers in the UK are providing care worth an unbelievable £184.3 billion a year – an increase of 29.3% since 2011. To put these extraordinary numbers into perspective, the combined NHS budget across all four nations of the UK was approximately £189 billion - this means that unpaid carers are providing care equivalent to the budget of a second NHS in the UK. This value of unpaid care is also over four times the amount of publicly funded spending on adult social care services. People are providing more hours of unpaid care than ever before, and the contributions made by unpaid carers have increased across all Local Authorities, Trusts and Councils in the UK. If unpaid carers stopped providing care overnight, the health and social care systems in the UK would collapse.

    • This value was calculated based on NHS budgets for each nation for the year each Census was conducted - 2021 for England, Wales and Northern Ireland; 2022 for Scotland (for further details see to each individual Valuing Carers report

    • Petrillo, M and Bennett, M.R. (2023) Valuing Carers 2021: England and Wales. London: Carers UK. carersuk.org/media/2d5le03c/valuing-carers-report.pdf

    • Zhang, J., Petrillo, M. and Bennett, M.R. (2023) Valuing Carers 2021: Northern Ireland. Belfast: Carers Northern Ireland. carersuk.org/media/irkn5e00/valuing-carers-northern-ireland.pdf

    • Zhang, J., Petrillo, M. and Bennett, M.R. (2024) Valuing Carers 2022: Scotland. Glasgow: Carers Scotland

18. December 9 2024 Government press release: Work and Pensions Secretary Liz Kendall earlier this year and led by Liz Sayce OBE - was established to investigate the reasons why overpayments have occurred for some carers as part of our mission to rebuild Britain and support working people. It follows concerns over reports of carers unknowingly accruing large amounts of overpayments of Carer’s Allowance, signalling the Government’s commitment to learn lessons and get to grips with the issues. Now the scale and scope of the review has been confirmed with the publication of its terms of reference. It will explore: How overpayments of Carer’s Allowance linked to earnings accrued and why this has happened, What changes can be made to reduce the risk of such overpayments accruing in future, What DWP can best do to support those who have already accrued overpayments"

19. December 11 2024 Hundreds of thousands hit by ruinous carer’s allowance penalties, audit shows. Campaigners say NAO report shows impact of DWP staffing decisions and failure to address flaws in benefit’s design Patrick Butler Social Policy Editor and Josh Halliday North of England Editor, The Guardian

2025

1. February 3 2025 DWP ‘blocked whistleblower (Enrico La Rocca) giving evidence to carer’s allowance review’ Staffer told by official it would be inappropriate for him to give evidence to review of scandal-hit benefit by Patrick Butler Social Policy Editor, The Guardian

   1. "The DWP has now confirmed staff, including La Rocca, will be encouraged to submit evidence. A DWP spokesperson said: “We have always been clear that staff members can contribute to the review, and we have already reached out to invite staff to share their insight."

   2. "The chair of the carer’s allowance independent review, the disability policy expert Liz Sayce, told the Guardian she wanted DWP staff to contribute. She said: “I’m really keen to hear from everybody who has evidence to give evidence. I want the review to get to the bottom of what happened.”"

2. February 12 2025 Unpaid carer wins overpayment penalty case against DWP Andrea Tucker has overturned the demand for £4,600 in carer’s allowance overpayments for alleged breaches in benefit rules by Patrick Butler Social Policy Editor, The Guardian

   1. She presented figures to the tribunal showing in each of the following five years her average income, calculated retrospectively, kept within the rules. She would regularly work six hours a month for nothing to ensure she could fulfil her work contract while continuing to claim carer’s allowance.

   2. The DWP contacted her in April 2024 to say she must repay £4,600 in accrued overpayments relating to 16 separate earnings breaches over the previous five years.

   3. Helen Walker, chief executive of Carers UK, said: “Far too many carers are currently repaying debts that they should not have been given in the first place. If averaging rules were applied fairly and carers informed quickly when they potentially breached earnings limits, many would not be in this situation.”

   4. A DWP spokesperson said: “This government is committed to supporting carers across the UK and we will carefully consider the tribunal’s written decision.

   5. “We understand the struggles facing so many carers, which is why have launched an independent review of carer’s allowance which is exploring how earnings-related overpayments have occurred and what changes can be made.

   6. “Alongside this, we have already taken action by boosting the carer’s allowance earning threshold – a move that will help more than 60,000 carers stay in work and keep much needed cash.”

3. Facts about Carers (last updated March 2025)

4. March 3 2025. Social Care 360: People who need social care will suffer if the government repeats the funding mistakes of the past. By Simon Bottery and Danielle Jefferies The losers may well be people who draw on care services. If local authorities have to pay more to providers while struggling to balance their books, then they will ration services (and seek other savings elsewhere), however reluctantly. We could easily return to the trend from 2015/16 to 2021/22, when the demand for care services increased but receipt of long-term care fell. That would be a tragedy, and an avoidable one. It should be a key concern for the first phase of the government’s new commission on adult social care.

5. March 11 2025 By Victoria Via an online Carer’s Forum I read there was a petition to the government to Increase Carer's Allowance to equal the minimum wage. It required 1000 signatures but failed. The Government response, in my opinion, lacks understanding that carers constitute the invisible backbone of social care, providing continuity of communication and medical support that is often absent in today's UK medical system. Ironically, if unpaid family carers worked in a care agency, they’d be paid the minimum wage.

6. March 20, 2025 Carers UK Press Release. Carers UK and 109 organisations send a Letter to Rt. Hon. Liz Kendall MP Secretary of State for Work and Pensions: Thousands of carers receiving new debt letters as review into Carer’s Allowance overpayments continues

7. March 20, 2025 Women’s Budget Group: Carer’s Allowance overpayments. We support an open letter expressing concerns about Carer’s Allowance overpayment debts

8. March 21, 2025: Ministers urged to act as thousands more hit by UK carer’s allowance debts. Ministers urged to act as thousands more hit by UK carer’s allowance debts. Latest overpayment figures bring total number falling foul of ‘cliff-edge’ rules on earnings to 144,000. by Patrick Butler Social Policy Editor and Josh Halliday North of England Editor, The Guardian

9. March 26, 2025 Carers UK Press Release Spring statement: Shocking carers' benefits cuts are a first in decades

Helen Walker, Chief Executive of Carers UK, said:

“Today’s spring statement confirms that the Government’s welfare reform plans will include the first substantial cuts to Carer’s Allowance in decades, realising many carers’ worst fears. This is an unprecedented step in the wrong direction and must be swiftly rectified.

“According to the DWP’s impact assessment, changes to Personal Independence Payments (PIP) entitlement rules will see 150,000 people lose their entitlement to carers’ benefits by 2029/30 - a reduction in financial support for carers worth £500 million.

“PIP is a ‘gateway’ benefit impacting eligibility for further support for carers, for whom the knock-on effect is both shocking and shameful. This will cause huge anxiety for hard-pressed carers and their families who need every penny they can get to pay their bills. 1.2 million unpaid carers already live in poverty, and 400,000 live in deep poverty in the UK.

“Carers save the UK economy an estimated £184 billion a year, but now many more are in danger of further financial hardship and poverty. They deserve so much more. The repercussions of today’s changes will be felt deeply by those who for too long, have been our last line of defence – providing vital support which simply can’t be found elsewhere.”

10. April 15 2025 DWP to overhaul carer’s allowance checks after overpayment scandal Department previously investigated only 50% of earnings limit alerts, meaning many carers fell into debt. By Patrick Butler Social Policy Editor, The Guardian

The chief executive of Carers UK, Helen Walker, welcomed the move: “When the alerts target was set at 50%, thousands of carers were missed and experienced large and damaging overpayments, in a situation that could have been largely avoided,” she said.

But she warned that until the new policy took effect, tens of thousands more carers would continue to be hit with overpayments, including an estimated 20,000 at risk when a huge backlog of paper-based alerts related to national insurance credits, which the DWP allowed to build up, is finally tackled.

“As the DWP works to clear the current backlog, the human cost of a system which needed an overhaul years ago will still continue to rise. Sadly, clearing the backlog is likely to result in a further rise in overpayments debts,” said Walker.

11. May 3 2025 Mother of autistic boy left with £10,000 debt after breaching DWP rules by £1.92 a week Over five-year period Oksana Shahar – who cares for her son – was paid a small amount more than carer’s allowance earnings limits allow. By Josh Halliday North of England Editor, The Guardian

The family appealed against the £10,000 fine but it was rejected by the DWP. They are now awaiting the outcome of a second challenge.

Oksana’s husband, Guy Shahar said the government’s “unfair persecution” had left them distressed and devastated: “It was like the whole foundation of the life that we’d created, which is a very simple life and it’s on fragile foundations anyway – it’s like those foundations were just being taken away. And they’re being taken away by people who’d been telling us all along that they were there to support us”.

Helen Walker, the chief executive of Carers UK, urged the DWP to write off debts in cases like the Shahars’ – and said the case highlighted the need for wide-ranging reform.

“I’m saddened and concerned by the fact that we’re still hearing of fresh instances of those, like Guy and his family, who have fallen foul of an inflexible and unfair system,” she said. “This is a clear demonstration of why we need to see a better alternative to the current ‘cliff-edge’.”

A DWP spokesperson said: “We have paused the recovery of Mrs Shahar’s overpayment pending the outcome of her appeal.

“We understand the struggles facing so many carers, which is why have launched an independent review of carer’s allowance, to explore how earnings-related overpayments have occurred and what changes can be made. This is due to report in the summer and the government will consider its findings following its conclusion.”

12. May 19 2025 At least £357m in carer’s allowance paid out in error over past six years, charity finds. Exclusive: overpayments because of official failures led to debt and misery for many thousands of people.

    Carers UK, which used new official fraud and error data to calculate the £357m figure, described it as an unacceptable failure by the DWP, which years ago promised new technology would almost entirely eradicate carer’s allowance overpayments.

    “Given that unpaid carers were falsely assured that the problem would be largely resolved in 2019, they deserve better, and we’ve asked the government to strike off debts where they could have told carers sooner,” said Emily Holzhausen, director of policy and public affairs at Carer’s UK.

13. May 20, 2025 Carers UK Press Release ‘Carers UK comments on new figures: Carer's Allowance overpayments in Government's publication of 'Fraud and error in the benefit system' 2024-2025’ Read the full press release here.

Last week, Government published its new Fraud and Error statistics which contain new figures on Carer’s Allowance.

Analysing this work, Carers UK has estimated that at least £357 million of Carer's Allowance has been overpaid in relation to earnings by the Department for Work and Pensions since 2019. During this time the DWP has failed to act swiftly on overpayments alerts, leaving many unpaid carers who had unwittingly gone over the earnings limit for Carer’s Allowance, with large debts.

This latest Fraud and Error publication shows the lowest recorded level of fraud to date on Carer’s Allowance earnings overpayments which is a move in the right direction, but this level could have been far lower, if the Government had acted earlier.

The DWP attributes the overall fall of fraud and error rates in Carer's Allowance (from 5.2% in 2020 to 3.9% in 2025) to its success with the Verify Earnings and Pension (VEP) system. We know that only 50%, at the most, of cases identified through this system were being investigated by the Carer’s Allowance team through this period. This rate could have been lower had the Government investigated 100% of alerts, telling carers far earlier about overpayments.

The DWP received strong recommendations as far back as 2019 to ensure that the Carer’s Allowance Unit was properly resourced to investigate matches flagged by the VEP system, but high levels of incorrect payments have continued.

In 2019, Carers UK demonstrated the outdated system was already failing unpaid carers, with little information for them to make decisions and understand how their incomes would be affected by earnings.

Helen Walker, Chief Executive of Carers UK, said:

“There have been missed opportunities to alert carers earlier, resulting in misery and hardship for many carers and their families who have inadvertently breached the earnings threshold. Unpaid carers often tell us that the DWP is short on advice and support and quick to penalise mistakes.

“Government could have continued to measure fraud accurately from 2020 – assessing if the alerts system was working as claimed but these figures are further proof of a system which lacks transparency and needs better, more robust management.

“We are pleased that Liz Sayce OBE is undertaking a review of the Carer's Allowance overpayments scandal, and that the Government has said that it will increase resources for the team tackling overpayments - to act immediately on 100% of VEP alerts. However, in the meantime, they intend to tackle the backlog of overpayments, which is likely to see more large overpayments incurred, inflicting more pain and misery on unpaid carers.

“Given that unpaid carers were falsely assured that the problem would be largely resolved in 2019, they deserve better, and we've asked Government to strike off debts where they could have told carers sooner.”

May 20, 2025 “Guardian journalists win Paul Foot award for carer’s allowance coverage Patrick Butler and Josh Halliday honoured for their coverage of ‘enraging and heartbreaking’ DWP scandal”

If you or anyone you know has an overpayment of Carers Allowance, seek support information from Carers UK or via their helpline at 0808 808 7777 from Monday to Friday, 9am – 6pm (excluding Bank Holidays), or you can contact them by email (advice@carersuk.org).

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Worth noting: Charities must tread a fine line with every statement they make to push for change with the government. I continue to be impressed by the Carers UK and work.

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This post amplifies the Carers Week information, resources and links, so that you can spread the word ‘I care about equality for carers’ this #CarersWeek

Planning an activity for #CarersWeek? Add your activity here on the Carers Week website and discover what else is happening across the country.

Carers Week is an annual campaign to raise awareness of caring, highlight the challenges unpaid carers face, and recognise the contribution they make to families and communities throughout the UK. It also helps people who don't think of themselves as having caring responsibilities to identify as carers and access much-needed support.

There are 5.8 million people in the UK caring for a family member, friend or neighbour who is ill, older or disabled. Despite contributing an estimated £184 billion to the UK economy each year, many carers feel undervalued and unsupported.

Carers Week 2025 is organised by Carers UK, alongside charity supporters Age UK, Carers Trust, MND Association, Oxfam GB, Rethink Mental Illness, The ME Association and The Lewy Body Society.

Together, the eight charities are welcoming individuals and organisations to join them in raising awareness, to increase visibility for carers with decision makers, services, employers, communities, and businesses.

Carers Week 2025

The theme for Carers Week 2025 is 'Caring About Equality' highlighting the inequalities faced by unpaid carers, including a greater risk of poverty, social isolation, poor mental and physical health. Far too often, carers of all-ages miss out on opportunities in their education, careers, or personal lives, just because of their caring role.

Helen Walker, Chief Executive of Carers UK, said:

“Caring for a loved one should never be a reason for facing inequality, but sadly this is a reality for many in the UK. Unpaid carers are desperate for a break, for better health and social care provision, financial support and equality in the workplace. Over half say they need better understanding and recognition from the public.

“Carers Week 2025 is a crucial opportunity to increase awareness, highlighting those who provide vital care to family members, friends or neighbours when they need it most. We want to see a future where they have the right support and the same opportunities to lead healthy and financially secure lives alongside their caring role.”

Unpaid carers are the backbone of our society, propping up fragile health and social care systems and providing essential care to friends and family who need their support. Despite carers’ huge contribution to our communities, many carers still feel undervalued and unsupported.

Inequalities can negatively impact all aspects of carers’ lives, putting carers at a greater risk of poor mental and physical health, social isolation, financial hardship, and poverty. Far too often, carers miss out on opportunities in their education, careers, or personal lives, just because of their caring role.

The inequalities that carers face mean that:

• 70% of carers have a long-term physical or mental health condition, disability or illness compared to 59% of non-carers1

• the poverty rate for carers is 50 % higher than for people who do not provide care2

• young adult carers are 38% less likely to achieve a university degree than their peers3

• 1 in 4 carers of working carers have had to take on a lower paid or more junior role. 4

Carers should have the same life chances and opportunities as people without caring responsibilities. To make this happen, action is needed right across the board, with government, schools, colleges, universities, workplaces and health and social care services all having a vital role to play.

Get involved

Support Carers Week 2025 and join the call for greater equality for unpaid carers.

Whether you are a carer or someone being cared for; an organisation, school or charity; a politician, health or social care professional; or just someone who cares about unpaid carers - there are plenty of ways to get involved in Carers Week.

There are lots of ways to get involved in #CarersWeek!

Find out more here 👉 www.carersweek.org 

Planning an activity for #CarersWeek? Add your activity here and find out what else is going on up and down the country

Join us in saying ‘We care about equality for carers’ this #CarersWeek

Social media graphics for use on social media can be downloaded here.

Helpful Resources and Downloads to help you plan an activity or write a social media post or article

Read more about the need for action on inequalities impacting unpaid carers:

• finances

• education and employment

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Press the ❤️, restack, and share this article so more people have the resources they need to spread the word, raise awareness, and reflect on the evidence shared about the experiences of unpaid carers.

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The news and politics can increase worries and anxiety. If you’re feeling tired and worn, I see you. Consider taking a break from news and noise.

I’ve written this article to lay out the facts and evidence, amplify the viewpoints of unpaid carer experts and try to get to the ‘So what does this all mean for us?’

Here in the UK, ahead of the Spring Statement (Wednesday, March 26), there’s been a flurry of government statements/actions:

• Wes Streeting on the Laura Kuenssberg programme, Sunday, March 9. There is an "overdiagnosis" of mental health conditions with "too many people being written off", Health Secretary Wes Streeting has said.

• The Prime Minister Keir Starmer’s abolition of the NHS England Quango (Thursday, March 13)

• Liz Kendall, Secretary of State for Work and Pensions (DWP) announcements (Tuesday, March 18) about the benefits overhaul.

This has been a week of politics that has created much anxiety, fear, and confusion.

The Carer Mentor Publication, iCARE stack, ComfortZone, and community support network can provide empathy and insights to help you.

The CAPE Anthology will continue to Raise Awareness. Dispelling the myth that Carers are Superhuman. Care, be Aware, Prepare & Engage (CAPE).

Contents:

1. What the recent Government’s publication of the welfare reform green paper can mean for Unpaid Carers in the UK: Carers UK Press Release and the email sent by the mobilise organisation to its carer members

2. Useful UK Organisations that can offer carers support

3. Personal Commentary/Statements by Victoria

4. The Government Statements Politics and policy changes ahead of the Spring Budget (March 9 - March 26th, 2025)

1. Carers UK responds to the Government’s publication of the welfare reform green paper proposing changes to disability and health benefits (18 March 2025)

Helen Walker, Chief Executive of Carers UK, said:

“We are very concerned that the plans the Government has published today could hit unpaid carers, disabled people and their families very hard, if implemented in full.

“While we agree the current system is unfit for purpose and a greater focus on prevention, early intervention and personalised support are much needed, the financial impact of tightening eligibility to essential disability benefits could severely impact on individuals and families who are already struggling financially.

“1.2 million unpaid carers in the UK are living in poverty, (with 400,000 in deep poverty). Raising the qualifying threshold for support could mean even more carers will struggle to afford essentials like food and heating.

“Future changes to Personal Independence Payments (PIP) are likely to affect carers’ entitlement to Carer’s Allowance – over half of Carer’s Allowance awards are tied to PIP. Many carers have disabilities or long-term health conditions and caring is a risk factor in having to give up work. 28% of carers are disabled, compared with 18% of non-carers. Around 150,000 unpaid carers also receive both Carer’s Allowance and PIP, relying on these vital benefits to get by.

“Government could have taken the opportunity to do much more for unpaid carers in this green paper, particularly around enabling and supporting unpaid carers to remain part of the workforce where they are able to do so. Carers’ benefits are long overdue for reform. They also need better support from the NHS with their own health as well as good quality, affordable social care to help them stay in or re-enter work. Unpaid carers and their families need to get adequate financial support, whether they are in or out of the workplace.”

The informative email from mobilise.

You may have seen in the news yesterday that the government has announced plans to reform the welfare system, with a focus on reducing the benefits bill. Changes to welfare can have a huge impact on us as unpaid carers, so I wanted to take a moment to break down what yesterday’s announcement could mean for us.

[the following text is quoted directly from the mobilise email]

What the changes to benefits mean for us

Work and Pensions Secretary Liz Kendall has outlined plans, including:

• Scrapping of WCA (work capability assessment) in 2028 - The government plans to eliminate the Work Capability Assessment by 2028. Instead, claims will be assessed through the PIP system.
  

• Changes to Universal Credit - The Universal Credit health element for existing claimants will be frozen, meaning payments will not rise with inflation. But there will be an increase in the Universal Credit standard allowance and a new premium for severe, lifelong conditions starting in 2026.
  

• Stricter Personal Independence Payment (PIP) eligibility - From November 2026, the criteria for PIP will be tightened, meaning some may lose eligibility or receive reduced payments, though those with severe conditions won’t face reassessments.
  

• Removing barriers to trying work – A new “right to work” scheme will allow those on incapacity benefits to try working without losing financial support. For those of us thinking of returning to work, we may benefit from more flexibility during the transition. Read more on carer's rights in the workplace in our guide.

Changes like this can feel worrying and often seem beyond our control, but it’s important to know that we’re not alone in navigating these shifts. It’s understandable if yesterday’s announcements raises questions or concerns and we’ll be keeping a close eye on developments.

If we’re worried about how these changes could affect us, it’s helpful to know what other support options are out there. Here are some useful resources as a starting point:
💰 Check if you're eligible for Carer's Allowance, the main benefit for unpaid carers.

🚙 Use our Blue Badge checker to find out if you or the person you care for might be eligible (including hidden disabilities).

✅ See our financial checklist for carers, so you're not missing out on support.

Is there something you feel we could be doing together to support those of us affected by this? Or a question you'd like to know the answer to? Let us know in the Mobilise Hub.

2. Useful UK Organisations that can offer support

1. Carers UK: For unpaid carers with expert information, advice and support. A Carers discussion forum (anonymous participation). Campaigning to make life better for carers. Helpline to talk to a trained expert

2. mobilise 'Together we care and thrive' Looking after a family member or friend, who has a disability, long-term illness or is elderly? Well you might be struggling to find support with anything from finances to practical help, from mealtimes to continence, from hospital discharge to finding time for yourself. We’ve got you.

3. Carers Trust Young Carers Advice and Support for young carers

4. MIND Crisis and Listening services

5. SCOPE We are Scope. We’re here to create an equal future with disabled people. We campaign to transform attitudes to disability, tackle injustice and inspire action.

6. UK Citizens Advice website

7. Flexa ‘Find your dream place to work. We find companies that you can trust, so you can find where you belong.’ Flexible work, remote work, and inclusive

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Personal Commentary/Statements gathered by Victoria

• We need organisations like Carers UK and 'mobilise, to translate the impact of these policies for Carers, and voice concerns because the eligibility/process and systems are convoluted and opaque. The impact on unpaid carers has not been addressed in recent government statements.

• Rachel Reeves, The Chancellor, previously ruled out further tax rises, but faces difficult choices because of the performance of the UK economy and world events. Reeves has committed to one major economic event - the Budget 1- each year. That means no big policy announcements are expected on 26 March, The Spring Statement, but that's not stopping them being made beforehand. It’s worth noting Reeves has repeatedly said her rules are "non-negotiable". Her two main rules are:

  • Not to borrow to fund day-to-day public spending

  • To get debt falling as a share of national income by the end of this parliament

  Ahead of the Spring Statement, the Treasury has drafted plans for several billion pounds of spending cuts.

• What is the OBR: The independent Office for Budget Responsibility was established in 2010 to monitor the public sector’s finances. Twice a year – usually alongside each Budget and Spring or Autumn Statement – we produce detailed forecasts for the coming five years, assessing the likely impact of any policy decisions and expected developments in the economy. We then use these forecasts to assess the Government’s performance against the fiscal targets that it has set itself for the management of the public finances.

• Carers Allowance for unpaid carers (not a means-tested benefit, it’s not easy to calculate):

• Currently, the Carers Allowance has not been reformed. It was sidestepped by increasing the maximum cap that a carer can work (in my view, this was done because of the overpayment scandal).

  • Carers who care 35 hours are paid less than the minimum wage, i.e., earn less than an over-21-year-old who works 35 hours.

• While unpaid carers provide ‘free care services’ for family/friends there are still many direct costs that a family has to pay. Financial burdens increase, but the ability to earn/work has decreased.

• Be aware and BE Wary of Virtual wards (I’ve had personal experience October 2024 something I’ll share when I’ve the space/time). There’s added burden on family to nurse someone at home with added expectations and data entry at an emotional time:

A study published in BMJ Open last week, which assessed 318 virtual ward patients with a range of conditions at Wrightington, Wigan and Leigh teaching hospitals NHS trust, suggested that while their initial hospital stay was shorter, they also experienced higher rates of readmission, which ultimately led to additional costs.2

• The NHS discussions do not include social care. January 2025: No social care reform but there is new commission headed by Baronness Casey to readout partially in 2026 and then fully in 2028. “Ministers plan biggest shake-up of adult social care in England for decades But final report on reforms would not emerge until 2028, which health leaders say is kicking crisis ‘into the long grass.’ “

  • There are Reports but no cross-party action: Social care commissions: looking back to move forward (15 November 2024) Authors: Lucinda Allen Richard Humphries Hugh Alderwick

Carer Mentor by Victoria is free to read. If you have the means and would like to support the publication, I welcome monthly (£6) and annual (£50) subscriptions. Thank you for your ongoing support.

Your support is greatly appreciated Thank you!

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4. Politics and policy changes ahead of the Spring Budget (March 9 - March 26th 2025)

Ahead of the Spring Statement (March 26) there’s been a flurry of government statements/actions. Wes Streeting on the Laura Kuenssberg programme, Sunday, March 9. The Prime Minister Keir Starmer’s abolition of the NHS England Quango3 (March 13) plus Liz Kendall's (Secretary of State) DWP announcements (March 18) about the benefits overhaul. This week of politics has created much anxiety.

• Mental health conditions are overdiagnosed, Streeting says

  Streeting told the BBC's Sunday with Laura Kuenssberg programme the welfare system had to be "sustainable", as he defended the government's forthcoming reforms aimed at cutting the benefits bill.

  Mental health charity Mind has since warned it was important to be "extremely careful" with the language around diagnoses to avoid stigmatising people. (BBC Political reporter Joshua Nevett)

• Over diagnosis and stigmatisation are what Wes Streeting has been accused of By breaks down this statement the UK Health Minister made during an interview on March 9th.

  “Here’s the other thing, mental wellbeing, illness, it’s a spectrum and I think definitely there’s an overdiagnosis, but there’s too many people being written off and, to your point about treatment, too many people who just aren’t getting the support they need. So if you can get that support to people much earlier, then you can help people to either stay in work or get back to work.”

• Keir Starmer scraps NHS England to put health service ‘into democratic control’

  Health secretary says end of ‘biggest quango in world’ is final nail in coffin of Andrew Lansley’s 2012 reorganisation. March 13.

  • NHS England to be axed as role returns to government control

  • How did Andrew Lansley reorganise health and create NHS England?

    Former Tory health minister’s 2012 scheme marked the biggest reorganisation in NHS history. March 14

• Wes Streeting warns hundreds more health quangos could face axe. Health secretary says the scrapping of NHS England is ‘beginning, not end’ of bid to slash ‘bloated bureaucracy’ March 15

• Benefits crackdown unveiled with aim to save £5bn a year by 2030

  The government has unveiled sweeping changes to the benefits system, aimed at saving £5bn a year by 2030. March 18

  Work and Pensions Secretary Liz Kendall said the overhaul would create a more "pro-work system" to encourage people to take up jobs, while protecting those who cannot work.

  The changes will make it harder for people with less severe conditions to claim disability payments. Extra benefit payments for health conditions will also be frozen for current claimants and nearly halved for new applicants.

  And people aged under 22 could be prevented from claiming universal credit top-up payments for health conditions.

• Chris Mason: Uncertainty over benefits changes could go on for some time yet March 18

• What will be in the chancellor's Spring Statement? (published 9 March updated 14 march)

  The chancellor will give an update on her plans for the UK economy when she gives a statement alongside an economic forecast on 26 March.

  Rachel Reeves has previously ruled out further tax rises, but faces difficult choices because of the performance of the UK economy and world events.

Carer Mentor by Victoria is free to read. If you have the means and would like to support the publication, I welcome monthly (£6) and annual (£50) subscriptions. Thank you for your ongoing support.

Your support is greatly appreciated Thank you!

Please remember to ‘❤️’ LIKE the article to guide others to these resources.

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I challenge gender stereotypes, discrimination and bias.

“We've arranged our work world as if we're not humans who love people who need us to step in. And that's got to change,” Emily Kenway, author of Who Cares: The Hidden Crisis of Caregiving.

An Introduction to Some Facts That Burn

Gender inequality in caregiving for the elderly, sick and disabled is well-documented1. For example, Research by the Centre for Care on the likelihood of providing care in the UK found that women have a higher chance of becoming a carer than men (70% vs 60%). By the time they are aged 46, half of women have been a carer. Men have the same 50:50 chance by age 57 – eleven years later.

Research by the Joseph Rowntree Foundation2 based on Understanding Society data found that if the number of carers rises only in line with population growth, by 2035 there will be an extra 400,000 people in the UK caring for the elderly, sick and disabled for 10 or more hours per week, an 11.3% increase compared to today. If we include those caring for fewer than 10 hours per week, this figure rises to 990,000 additional carers, a 10.6% increase compared to today.

And yet, the increasing need for social care has outpaced economic policies and infrastructure changes. The UK government announced January 3, 2025, an independent commission for reforming adult social care, chaired by Louise Casey. Split into two phases, this cross-party commission will report firstly in mid-2026 and then will set out a longer-term plan ‘by 2028’. You can read the response of the County Councils Network here, and Melanie Williams, President of ADASS (Directors of Adult Social Services (UK)) here. Here’s an excerpt:

“Unfortunately, the timescales announced are too long and mean there won’t be tangible changes until 2028. We already know much of the evidence and options on how to reform adult social care, including our independently commissioned Time to Act report, and worry that continuing to tread water until an independent commission concludes will be at the detriment of people’s health and wellbeing. (Melanie Williams)

There is a mountain of evidence and research about the impact of caregiving on the financial, health, and well-being of unpaid carers.3 With delayed social care reforms, guess who’ll be undertaking more caregiving? Not just you and me, but the next generation.

While women continue to strive for pay parity and recognition of achievements, we are more likely to be carers at an earlier age compared to men, poorer4 and potentially suffering from ill health ourselves.

This is a global phenomenon…and before anyone thinks it… it is the same across all cultures. Contrary to the assumed cultural bias that it’s ‘easier’ for some cultures, —it may be normalised in some cultures, but the impact and struggles remain the same!

What can we do to accelerate action, support younger people who may be on the cusp of caregiving, and reduce the gendered bias around care? I have a few thoughts. What are yours?

Leave a comment

In solidarity with International Women’s Day, I’m sharing some insights into caregiving. What can we do today to shift the narrative away from individual gender-biased responsibility and push forward towards Caregiving being a shared, collective and intergenerational array of actions with our neighbours and within communities?

Table of Contents

1. The International Women’s Day theme that challenges us to consider how to 'Accelerate Action.' to forge gender parity.

2. Snapshots of caregiving today:

   1. PBS Hour “As America’s population ages, women shoulder the burden as primary caregivers” (Video + Emily Kenway interview)

   2. Caring Across Generations: Protect Medicaid campaign

   3. “Older women, caregiving, and the silent crisis of gender inequality” (a quote and link)

3. What can we do today and tomorrow to accelerate action?

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International Women’s Day (IWD) 2025 campaign theme is 'Accelerate Action'

Click here to go to the organiser’s website

As Gloria Steinem once explained: "The story of women's struggle for equality belongs to no single feminist nor to any one organization but to the collective efforts of all who care about human rights."

International Women's Day (IWD) has been around for over a hundred years, and many issues still impact women's advancement. Since 1911, IWD belongs to all who care about women's equality.

Celebrate women's achievements, raise awareness about discrimination, or take action to forge gender parity. All IWD activity is valid. (#IWD2025 #AccelerateAction for gender equality.)

At the current rate of progress, full gender parity will not be achieved until 2158, roughly five generations from now, according to the World Economic Forum.

#Accelerate Action emphasises the importance of taking swift and decisive steps to achieve gender equality. It calls for increased momentum and urgency in addressing the systemic barriers and biases women face, both personally and professionally.

One of the best ways to forge gender equality is to understand what works and to do more of this faster. Accelerate Action is a worldwide call to acknowledge strategies, resources, and activities that positively impact women's advancement and to support and elevate their implementation.

Significant barriers to gender equality remain, yet positive progress can be made for women everywhere with the right action and support.

Snapshots of caregiving today:

A) PBS Hour “As America’s population ages, women shoulder the burden as primary caregivers” (Video + Emily Kenway interview)

Currently, 1 in 6 Americans is older than 65, a number that’s projected to rise to 1 in 4 by 2050. As older Americans’ needs for medical care and other support grow, women bear the biggest part of the burden of caring for them. Ali Rogin speaks with some women about their experiences, and author Emily Kenway talks about the often unseen costs of caregiving. (March 31, 2024)

ALI ROGIN: Joining me now is Emily Kenway, author of "Who Cares: The Hidden Crisis of Caregiving and How We Solve it"5 and a former caregiver herself. Emily, thank you so much for joining us. Can we start with your own caregiving journey?What did you go through and when did you realize that this is indeed a crisis?

EMILY KENWAY, Author, "Who Cares": Yes. So I cared for my mother. She was a single mom, which meant I needed to step in as her daughter when she was diagnosed with cancer in 2016. And obviously that was incredibly difficult personally. But it also woke me up politically to what's going on with caregiving around the world today. And we know that this is just going to get worse over time as well, right? So we have aging populations around the world. You know, one demographer has called it the greying of America. And so we can all expect a greater and greater load of caring responsibilities and to be in the crisis that I was in unless we introduce major changes.

ALI ROGIN (AR): And when you talk about who's taking on those responsibilities, it is disproportionately women. Why have you found that to be so?

EMILY: We have this historical heritage whereby around industrialisation, we created this cultural norm, right, that the man goes to work and does waged work and the woman stays at home and does unpaid care. And we haven't caught up with today's reality at all, because, of course, today more women are working. Many households need the women to work. You know, those wages are not things that can just be tossed aside.

And so this idea that we can carry on ascribing to one gender all of the weight of care for our entire species is really outdated.

AR: And given all those realities you just laid out, what are some of the challenges that women tend to face when they become caregivers?

EMILY : Of course, there's a financial impact.

Most of the time, if you're a caregiver, you'll need to reduce your working days and you may give up your work entirely.

In fact, we know in the U.S., on average, women caregivers lose about $320,000 in lost income and lost social security benefits.

And that doesn't just harm us right now. That means we're going to have a real problem in retirement, right? Our security in old age is harmed just because we stepped in and did the right thing.

There's also a massive psychological toll. You may be having to constantly monitor and watch your loved one's condition.

You're experiencing what we call role reversal. So you suddenly become the mother of your mother, right? And you're dealing with that strange dissonance.

And then, of course, you're moving through a world that doesn't recognize or support this. So your employer may well not accommodate your caring responsibilities.

And it bears out in the statistics, too. We know that caregivers have higher rates of depression and anxiety for these reasons.

AR: Given the fact that so few resources exist, I would imagine that also comes with a lot of assumptions and misperceptions. What are some of the most pervasive that you've come across when it comes to caregiving?

EMILY: I think one of the most pervasive assumptions is that caregiving is kind of something that doesn't have any costs when it's performed by the family, right? So, yeah, it's free. We're not being paid, but there are enormous costs.

When you're very elderly or very unwell, you need to be kept warmer. There's higher energy costs. There's mobility aids. There's special diets. There's all of this kind of thing. So there's a material, practical reality there.

The other misperception I encounter a lot is this idea that some cultures can manage this more naturally than white Western cultures, right? So that would typically be countries in the Global South. And it is very much more normalized that they would perform care, for example, for their parents-in-law, not just their parents. But when you actually listen to them, they are struggling in exactly the same ways as I was, the same ways as women everywhere are, because care is hard.

So we have to be very careful of making assumptions based on people's culture, ethnicity, nationality, and so on, and instead see that women around the world, we're all in the same fight here together.

AR: And Emily, here in the U.S., one in five adults right now are working as caregivers. How can we better prepare to care for these aging populations in the years to come?

EMILY: What we need to do here is really recognize that humans are going to have to provide care. And so we need to embed policies that recognize that. That's things like paid caregiver’s leave, from work?

So at the moment, the Family and Medical Leave Act only provides unpaid leave. And in fact, the Department of Labor found that 41% of private sector employees aren't even covered by it.

So there are these fundamental economic policies that we shouldn't even be having to ask for, frankly, because it's so obvious that they're necessary.

But basically, we've arranged our work world as if we're not actually humans who love people who need us to step in. And that's got to change.

AR: Emily Kenway, author of "Who Cares: The Hidden Crisis of Caregiving and How We Solve it," thank you so much for joining us.

EMILY: Thank you.

B) Caring Across Generation: Protect Medicaid Campaign

The Trump administration is pushing dangerous cuts to Medicaid and the Affordable Care Act (ACA), putting millions at risk. These cuts would devastate families, caregivers, and care workers, all while funding tax breaks for the wealthy. But together, we can stop these dangerous cuts and protect Medicaid.

What's at Stake

Medicaid is more than just a healthcare program—it’s a lifeline for nearly 80 million people, including 17 million disabled people and older adults. It provides essential coverage for doctor visits, medications, and long-term care that private insurance often doesn’t cover. It ensures children get the care they need without families facing financial hardship.

Now, that lifeline is under threat. The proposed Medicaid cuts aren’t about saving money—they’re about shifting resources away from families and caregivers to fund tax breaks for the ultra-wealthy.

If cuts are made:

Millions of family caregivers would lose critical support, making it even harder to balance work, family, and caregiving responsibilities.

7.8 million disabled people and aging adults could lose access to home and community-based services (HCBS), taking away their right to receive the care they need on their terms. This is also something that, in most instances, Medicare will NOT cover.

Rural hospitals could be forced to close, which provide access to lifesaving care and create good-paying jobs within the healthcare system.

The direct care workforce shortage would worsen, as millions of home care workers – who are paid through Medicaid – could see job losses or reduced wages.

As federal budgets are slashed, state governments can’t fill in the gaps. Unlike Medicare, which is a completely federally-run program, Medicaid is jointly funded by federal and state governments. Cuts at the federal level would put pressure on states, none of which have the funding to fill the gaps.

It is not possible to reduce funding to Medicaid without hurting disabled people and older adults. We must fight to protect and expand Medicaid, not take it away.

Read more actions you can take to support the campaign here

C) “Older women, caregiving, and the silent crisis of gender inequality” (a quote and link). Published 23 February 2025

HelpAge International is launching a campaign to honour the 30th anniversary of the historic 1995 Beijing Conference6 by spotlighting remarkable women who attended and helped shape the global gender equality agenda.

As the world gathers for CSW69, this initiative will highlight their experiences, reflections, and ongoing advocacy, demonstrating both the progress made and the urgent work still needed to achieve true equality for women and girls.

In this interview, Isabel María Martínez Lozano7 reflects on the power of global solidarity, the progress made in gender equality, and the alarming pushback against women’s rights today. She discusses the persistent challenges facing older women, the need for intergenerational activism, and why feminist movements must stay united in the fight ahead.

In short, women live longer but suffer from poorer health, have more chronic illnesses, and face greater financial hardship. Gender-based violence remains a significant issue for many older women, who often lack the means to escape long-standing cycles of abuse. However, an encouraging aspect is their resilience and their ability to forge support networks within their communities.

What can we do today and tomorrow to accelerate action?

A small actionable idea - let’s talk more: Older women to younger women. Caregivers to potential caregivers. Parents/relatives with family members. Intergenerations, cross-culturally and regardless of gender. Over a cup of tea with our friends, in our communities and at work. Here in virtual communities.

This isn’t only about women bearing the caregiving responsibilities, it’s also about how we ALL plan for our future.

We can start to seed in thoughts into family discussions, engage with empathy and open questions to actively listen and understand peoples wishes and discuss health needs.

To restate the Carers UK fact: By the time they are aged 46, half of women have been a carer. Men have the same 50:50 chance by age 57 – eleven years later.

I resigned from my full time employment aged 45, but had 2 years of caring on and off to have my eyes fully opened to what my choice would entail. Many caregivers don’t see any choice or ‘sleepwalk’ into caregiving, unprepared and unsure of their loved one’s wishes.

Talking may seem small but small seeds can grow, we can

• raise awareness around the realities of caregiving, remove taboos about health and care discussions.

• identify loved one’s wishes and needs today, and potential near-term scenarios

• have intergenerational discussions with friends and younger family members (not just sons and daughters) and identify those willing to offer support

• take personal accountability and agency for our own wishes and needs by voicing our thoughts with loved ones

• begin to document instructions and wishes and identify (not assume) the person who can execute them, and the ones who can’t

Of course, systems and policies need to change but given politics and current affairs of today, we can’t assume local care support will be readily available. You can get involved with Caring Across Generations in the US, or Carers UK.

Can we start shifting the narrative from behind closed doors to open community discussions and accelerate change?

What are your thoughts? Could you support a caregiver in your community, or share your experience of caregiving with younger people who maybe on the cusp of caregiving? How can we reduce the gender bias around care?

Your support is greatly appreciated for the mission of this publication.

Please remember to ‘❤️’ LIKE the article to guide others to these resources

Dear Reader,

Care, be Aware, Prepare and Engage. CAPE

Irrespective of whether you are a caregiver, we’ll all need some care support at one point in our lives. I recommend gentle curiosity to increase awareness and be primed for when you will give/need care support.

Every country has a different healthcare system, social care system/services, and its own pros and cons. Let’s be mindful that access/availability and ability to finance care support and services differ for each of us.

CAVEAT 2025 I’ll share more information and press releases from evidence-based, official sources, with limited personal commentary. I’m not an expert on healthcare systems or services in the UK or USA, and I want to ensure readers receive referenced facts.

The Table of Contents:

1. Caregiving Misperceptions and Realities. What are our socially conditioned assumptions about caregiving, caregivers and respite?

2. The Facts Behind An Ongoing Injustice. Carer's Allowance Overpayments.

3. UK’s Personal Independence Payments (Pip): Eligibility for the main disability benefit will be narrowed.

   1. A review of events leading up to the PIP Announcement

   2. A personal perspective by Siobhan Calthrop

4. National Health Service (NHS), Social Care and HealthCare

5. On the Cusp of Caregiving (UK and US focus)

6. Carers Week 2024 (June 10 - 16)

7. The Hidden Crisis of Caregiving: Professor Joan Tronto, Ai-jen Poo and Emily Kenway.

8. Commentary on the research work of Carers UK and other Caregiving organisations in the UK

9. The Carer Mentor Mission

10. Link to iCARE Stack

1. Caregiving Misperceptions and Realities.

What are our socially conditioned assumptions about caregiving, caregivers and respite? What can we do to support one another in our communities?

The answer is not always, ‘take a break, get some respite from caring.’ I had a few days away, and it wasn’t all about relaxing.

2. The Facts Behind An Ongoing Injustice. Carer's Allowance Overpayments.

Carers UK, along with The Guardian's Patrick Butler and Josh Halliday, expose the facts and systemic failures faced by working carers.

Unpaid carers in the UK are being plunged into debt and prosecuted for fraud by the Department for Work and Pensions over its own benefit overpayments.- Patrick Butler, Social Policy Editor -

3. UK’s Personal Independence Payments (Pip): Eligibility for the main disability benefit will be narrowed

A) A review of events leading up to the PIP announcement by Liz Kendall, Secretary of State for Work and Pensions (DWP)

B) PIP cuts and unpaid carers. Call for radical re-thinking of employment for carers By

Having gone through the arduous task of applying for PIP for my older brother who has late diagnosed learning difficulties and autism, I am all too familiar with this benefit. Thankfully I was successful and he was awarded an Enhanced PIP, the most he can get. Winning this has made a huge difference to his life enabling him to pay for a PA/Support Worker to visit him through the week to help him with organising and managing his time, money, flat, emails, bills etc. She has been an enormous support, and without her, he simply wouldn’t manage. In addition, having an Enhanced PIP has granted him that all important recognition of need by social services; they use it as an indicator of need.

4. UK National Health Service (NHS), Social Care and HealthCare

• Policy paper Fit for the future: 10 Year Health Plan for England - executive summary (accessible version) Updated 15 July 2025

  When reading the policy paper, please note that it does not include any social care reforms, plans, or investments. For me, it’s easy to predict an increasing burden on family caregivers, who may or may not be digitally skilled enough to manage this kind of system.

  It’s productivity by numbers, conveniently disregarding unpaid carers and the need for social care reform.

• Independent report. Summary letter from Lord Darzi to the Secretary of State for Health and Social Care (15 November 2024)

• Independent Investigation of the National Health Service in England. The Rt Hon. Professor the Lord Darzi of Denham OM KBE FRS FMedSci HonFREng (September 2024)

• Key statistics on the NHS Get the facts behind the headlines with our compilation of key NHS statistics. The NHS facts and figures apply to England, unless otherwise stated. (18 August, 2023)

• NHS Confederation. “What we do. We empower and support healthcare organisations to improve population health, deliver high-quality care and reduce health inequalities."

• Community Health Services Explained The Kings Fund (4 July 2024)

• Change NHS Website

  

  Welcome to Change.NHS: Help build a health service fit for the future

  Our NHS is broken, but not beaten. Together we can fix it.

  The NHS has been there for us for over 76 years. But to make sure the NHS is here for the next 76 years, doing all it can to support the health of everyone, we need your help.

  We want to have the biggest ever conversation about the future of the NHS.

  It doesn’t matter whether you have a lot or a little to say. Your views, experiences and ideas will shape a new 10 Year Health Plan for England.

• The NHS Consultation: Give your feedback. A questionnaire, feedback on your NHS experience, improvement ideas, opinions and feedback on the consultation.

• Be Aware: Autumn ADASS Report on Social Care & Carers UK Press Release Response. Unpaid carers are already overburdened, and now the government aims to 'shift' more care from hospitals to the community.

• Carers Rights Day UK, (November 21, 2024). Advocacy and empathy for each other in our communities. iCARE Stack support.

• An Introduction to the NHS (There is a video that, to me, highlights just how convoluted and difficult it is to understand the NHS, how it works and how it’s funded).Text from the website:

  The NHS is a complex system, which can sometimes make it difficult to understand – especially working out who is responsible for what. It’s made up of a wide range of different organisations with different roles, responsibilities and specialities. These organisations provide a variety of services and support to patients and carers.

  Over recent years there have been changes to the way the NHS is structured and works. The likelihood is that you may not have even noticed this – it won’t have affected how you access your local doctor or hospital. But the changes have affected who makes decisions about health services and who holds the budget to pay for these services.

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5. On the Cusp of Caregiving

• Checkpoint: 'Are you a Carer?'  Many people don't consider themselves to be a Carer until a Crisis happens. Here are some useful UK definitions, facts, figures, and signposting to support you. November 11 2023.

US Specific:

• Caregiving 101. It Helps To Be Prepared. By . Publication: Ageing Well

• Navigating access to care support in the US is a section the Giving/Receiving Care Anthology

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6. Carers Week 2024 (June 10 - 16)

1. Carers Week UK. June 10-16, 2024. Unpaid Carers have 'No choice to care'. Can you support caregivers?

2. 'Care in the UK. 10 Facts Which Shock'. Realities and a Recommendation Updated Wednesday, October 30th, 2024 following the Autumn Budget, by the Chancellor, Rachel Reeves MP

3. 'Young carers and Young adults are Caregivers. The hidden crisis is ageless.' Let's ensure Children/Young adults know their rights and where to get support.

4. UK: Carers Allowance. Attendance Allowance. Two benefits. One for the Caregiver and the other for those receiving care.

5. Carers UK: 'Planning ahead, helping a loved one'. Animation 'Managing someone else's affairs.'

It’s worth remembering that slight differences exist in different parts of the UK (England, Northern Ireland, Wales and Scotland.)

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7. The Hidden Crisis of Caregiving: Professor Joan Tronto, Ai-jen Poo and  Emily Kenway.

• ‘An Introduction to Caring Democracy’, by Prof. Joan C Tronto Access Minnesota's Jim Dubois' Interview (July 15, 2014).

• Emily Kenway Interview Love and Caregiving go Hand in Hand  on Amanpour and Company June 5 2023.

• Emily Kenway's 'Who Cares: The hidden crisis of caregiving and how we solve it'October 24 2023.

• Ai-jen Poo Executive Director of Caring Across Generations in the US and President of the National Domestic Workers Alliance. Chris Hayes Podcast (MSNBC).  January 21 2024.

• 'A Q&A with advocate and activist Ai-jen Poo on how to break the isolation of caregiving'.By . Publication: 'Living in 3D: Divorce, Dementia and Destiny'.

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8. Personal Commentary on the research work of Carers UK and other Caregiving organisations in the UK

• 'Inequalities Faced By Young Carers' Identifying and supporting young carers. When we think of carers, we often automatically think of adults, but children and young adults are also carers.

  This article provides an introduction to the younger carers in the UK and to the work of organisations such as Carers Trust, which aim to offer them respite and advice.

• Dementia Action Week UK (May 19-25) Can you support the Alzheimer's Society Awareness Campaign?

• ALERT: Be Aware. This is COVID Autumn 2024. UK Carers prepare yourselves! CARE, be AWARE, PREPARE, and ENGAGE we are NOT super heroes or superhuman (Oct 5, 2024)

• Commentary: Carers Allowance Overpayments. Can you get your head around these facts? (July 29, 2024)

• New Rights - The Carers Leave Act. (April 6 2024) Carers UK and Government website information.

• Commentary: 'Nearly half of working age carers lose £12,000 of income per year because they provide care'.(15 January, 2024)

• Commentary: 'Burning' There was no holiday for many Carers. (January 11 2024.)

• Commentary: 'Carers UK State of Caring - Health Report 2023.'Being a Caregiver impacts our health and wellbeing. Connecting, sharing and supporting other Carers helps you realise you're not alone. (November 5 2023.)

• Commentary: State of Caring - The impact of caring on (Finances)Carers UK Report (October 17, 2023)

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9. The Carer Mentor Mission

Context: As the population ages, a whole new generation is added to our lifespan - an ageing population, a ‘5 generation’ workplace’/economy & a ‘Sandwich generation’ that is burning out. (see Interview Chris Hayes Podcast with Ai-jen PooExec Director of Caring Across Generations in the US).

The Problem: There is an increased need for care that has outpaced the change in policies and infrastructure. There is a hidden crisis as caregivers struggle to do everything themselves; long battles with bureaucracy and difficult access to care support exhaust whatever energy remains after working. Compounded by the fact that everyone’s trying to make ends meet financially. So, conversations are ‘put off’, and denial and discomfort simmer until a medical crisis occurs.

How do we improve the situation and match the needs of the growing, ageing population? How do we care for our loved ones today, and who’ll look after us later? There is a collective social need for change.

The Idea: We can start by changing the narrative around care and caregiving - let’s start having more discussions within our families and with others and creating solutions in our communities. While I hope we can advocate for changes in policy and with governments, I’ve seen the most powerful, effective solutions being made between 2 or 3 people sharing daily tasks and errands. E.g. shopping, picking up medications, and driving to medical appointments.

We can make a difference—one cup of tea/coffee, one errand, one conversation at a time. Define your care team. Build your Caring Community.

Disclaimer: The information shared here is in the public domain and is presented as a personal opinion. I'm not employed or paid by any charity or Carer organisation. Please note that the UK government gives specific guidance for charities or non-profit organisations concerning campaigning and political activity. This is a personal commentary and opinion, and I’m stating independence from these organisations for advocacy purposes. Government Guidance website: The Purpose of this website is not political. It is to raise awareness of caregiving and support individuals.

10. iCARE Stack

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Carer Mentor by Victoria is free to read. If you have the means and would like to support the publication, I welcome monthly (£6) and annual (£50) subscriptions. Thank you for your ongoing support.

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Return to the iCARE Stack

Sometimes, articles flow easily, and sometimes, they do not. I stumbled, stopped and started on this one. So, I paused and reflected on why I was not shouting about Carers’ Rights.

On the one hand, we need organisations to campaign for new policies to establish carer rights, and carers need to be aware of these rights.

On the other hand, I wonder how these rights can become the ‘norm’. Who enforces them? Who has our backs in that moment of need? When do caregivers have the time to write and follow through on complaints if those rights are not adhered to when caring for loved ones?

We push, check, and try to speak up, having to think on our feet to advocate for BOTH our loved ones' needs and our Carers' rights. (I can tell you which ones take precedence when we’ve been blue-lighted sirens blaring into a hospital.)

Society underappreciates and devalues the contribution of caregivers because, in general, people don’t see want to see us as the backbone of care until they become unpaid carers themselves. Sitting in a hospital ER cubicle or negotiating out of my mother being discharged from a hospital room, the power dynamics are not in a caregiver’s favour.

Phrases I hate: ‘It is what it is’, ‘That’s just the way it is’, ‘They won’t change things.’

I used to lead teams that identified can-do solutions: ideas that could circumvent the hurdle, alter the goal, intervene to resolve a conflict or find an alternative path.

Now, I feel frustrated, stuck and impotent to change things.

Despite feeling conflicted, I’m still writing this article because I know we need to raise awareness of Carers’ Rights, use experts like Carers UK to translate the jargon, and support campaigns for better policies. Unfortunately, I’m very used to feeling conflicted.

BUT, can you help us reclaim a little of that lost power?

Read about Carers Rights. Can you help advocate for your carer friend when they’re in a hospital or trying to schedule a needs assessment?

Today, I’m thinking about the unpaid carers who are underrepresented and minority groups who have additional pressures and challenges.

P.S. ALL these thoughts make me count our many blessings for the doctors and specialist nurses who continue to support us and appreciate my role as a caregiver. They are the ones who work with me, listen, respond and have my trust and gratitude.

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Today is Carer’s Rights Day.1 Carers UK and organisations like Mobilise work hard to raise awareness and campaign for policy changes for unpaid carers in the UK.

Click here to go to the Carers UK website to read more about Carer’s rights or click the image below. Carers UK are the experts. They have a helpline with experts who’ve heard it all and can help you navigate finances and the benefits system.

From the Carer Mentor ‘Mission’

While I hope we can advocate for policy changes, I’ve seen the most powerful, effective solutions developed between two or three people who connect and share daily tasks and errands, such as shopping, collecting medications, making meals for others, and driving friends to medical appointments.

We can redefine care and caregiving in our communities: one cup of tea or coffee, one errand, and one conversation at a time. Define your care team. Build your Caring Community. Let’s empower ourselves.

We can support each other, by leveraging our capabilities and talents, sharing our experiences when others seek advice, and offering empathy to anyone who needs to express their frustrations. Let’s be neighbours who support each other.

In our communities, we can ensure we support ALL Carers

Carers Rights Day falls after Transgender Awareness Week (November 13th to November 19th 2024) and Transgender Day of Remembrance (November 20th).

Carers UK & Carers Trust: The Experiences of Trans Carers: A Research Report (December 2023)2

This report examining the experiences of trans carers aims to address a current gap in the research on unpaid care, drawing on interviews with four carers whose gender identity is not the same as their sex registered at birth. 

It sheds a valuable light on the experience of trans carers indicating that whilst trans carers encounter many of the same challenges as cisgender carers, experiences of discrimination and prejudice can exacerbate these difficulties - particularly with regards to mental health and accessing health and social services.

Although the small sample size makes it difficult to draw any definitive conclusions from the research, it serves as a useful reminder of the need to integrate trans experiences of care into policy and practice. 

LGBTQIA+ Carer Resources:

LGBTQ+ and Caring This link shares more information and resources

Carers UK: Supporting LGBTQ+ Carers: A good Practice Briefing for providers. (January 2023)

Caring for LGBTQ+ people at the End of Life Marie Curie Resources

Macmillan Cancer Support. LGBTQ+ people and cancer treatment

Stonewall:3 and their Best practices, toolkits and resources  

Supporting Black, Asian and Minority Ethnic Carers

(Briefing report by Carers UK Feb 9 2023)

Many carers from Black, Asian and minority ethnic minority backgrounds do not often recognise themselves as carers, with some languages lacking a distinct word for ‘carer.’ They may instead primarily see themselves as a family member due to cultural expectations and not access resources available to them as a result. It is therefore vital that organisations are culturally sensitive, and cater to the distinct needs of Black, Asian, and minority ethnic carers.   

A Good Practice Briefing

I recommend reading the briefing document and clicking through the references.

Building a community hub of resources and a support network online

For all these reasons and more, I’m building the iCARE Stack

Being a caregiver, giving care or receiving care is a very human action and a complex set of struggles and challenges. You’re not alone. Take a look at the diverse caregiver experiences.

The iCARE Stack Vision

A reliable Go-To Hub. A portal to other authors/writers/creators’ publications focused on caregiving or to creators who share their experience as part of their wider portfolio content. I curate the indexes and anthologies, so you don’t have to spend your precious time and energy scrolling or searching for ideas or empathetic reflections.

I curate the information based on my experience and journey. It’s a great starting point when you have limited time, a portal of hope, and a community networking support!

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Carers UK response to the ADASS Autumn report

The Association of Directors of Adult Social Care (ADASS) 1

Press Release: 06 November

Helen Walker, Chief Executive of Carers UK, said:  

"Yet again, it is devastating to read the latest report from ADASS which clearly demonstrates that the challenges facing councils remain significant and are getting even worse as we head into this Winter.  

"Millions of unpaid carers are bearing the brunt of this crisis when so many are already pushed to the limit. Adult social care relies heavily on the care and support unpaid carers provide to family members, friends and neighbours. They are suffering the negative effects of severe shortages in the social care workforce and the lack of funding. This is impacting their own health and wellbeing and their ability to care.  

"The increasing intensity of care many provide also means thousands of unpaid carers find it increasingly difficult to juggle work and caring responsibilities, with around 600 leaving the workplace every day to care.  

"Local authorities need sustainable and sufficient funding to fulfil their duties now. We want to see the Government set out a clear plan of action for social care reform, including a National Carers Strategy, as an absolute priority."  

References:

The Three Shifts outlined in the NHS Consultation Questionnaire

(see My Priority Three Concerns)

Introducing the 3 shifts

The next questions relate to 3 ‘shifts’ – big changes to the way health and care services work – that doctors, nurses, patient charities, academics and politicians from all parties broadly agree are necessary to improve health and care services in England:

Shift 1: moving more care from hospitals to communities

Shift 2: making better use of technology in health and care

Shift 3: focussing on preventing sickness, not just treating it

Social Care in England

One type of work covers assessment and commissioning on behalf of local public finance, for people felt to be in need according to eligibility criteria. The public face for this activity is usually a social worker employed by the local authority.

A person’s needs are assessed against criteria, and their means to pay for care support are financially evaluated.

Funding, governance, oversight, the provision in terms of the availability of hands-on care in the home, and regulation are jargonised threads I’ve had difficulty deciphering:

Topline summaries of the 2022 and 2024 ADASS reports

ADASS SURVEY 2022: QUOTE

‘Making the focus of resources on acute hospitals, without addressing care and support at home, means people deteriorate and even more will need hospital care.’

ADASS REPORT 2024 QUOTE:

‘Hospital to Community – The social care workforce is fundamental to the success of community-based health and social care. This report underscores the importance of investing in the workforce, from local social care professionals to allied health roles such as physiotherapists and occupational therapists, which are essential to easing pressures on health and care systems alike.’

ADASS Survey 2022: Waiting for Care and Support

Our new survey findings show that more than half a million people are now waiting for an adult social care assessment, for care or a direct payment to begin or for a review of their care. 

This new evidence shows that despite staff working relentlessly over the last two years, levels of unmet, undermet or wrongly met needs are increasing, and the situation is getting worse. The growing numbers of people needing care and the increasing complexity of their needs are far outstripping the capacity to meet them.

Despite great achievements in increasing the amount of care provided, there is an even starker rise in the support now needed, with more people left without essential care to maintain their health, and dignity and lead good lives in their communities.

Not only are people waiting longer for care assessments, reviews, care packages and personal budgets, but family carers are having to shoulder greater responsibility and are being asked to take paid or unpaid leave from work when care and support are not available for their family members.

Making the focus of resources on acute hospitals, without addressing care and support at home, means people deteriorate and even more will need hospital care.

ADASS Autumn Survey 2024 ACCESS REPORT AND RESULTS HERE

The ADASS Autumn Survey 2024 highlights the growing and urgent challenges facing councils as they work to enable people to have access to vital care and support to people with disabilities, long-term health conditions and their carers amidst unprecedented financial pressures.

The Survey is an annual survey conducted by the Association of Directors of Adult Social Services (ADASS) which is sent to every Director of Adult Social Services (referred to as Directors in this report) in the 153 English councils with social care responsibilities. This year we had a response rate of 86%.  It was conducted between 12^th September and 9^th October.

Budgets – Adult social care budgets are under severe strain. Currently, 81% of councils expect to overspend their adult social care budgets this year—up from 72% in 2023/24—with an estimated total overspend of £564 million.

Savings – The report also indicates that a significant number of councils are being required to make further in-year savings—35%, compared to 19% in 2022. These savings come on top of the highest level of planned reductions in eight years, with a projected increase to £1.4 billion in required savings by 2025/26. This severely constrains councils’ ability to invest in essential areas such as workforce development, preventive services, and support for unpaid carers.

ADASS is committed to supporting the Government’s vision of shifting health and social care from sickness to prevention, hospital to community and analogue to digital.  Our survey examined these challenges.

Treatment of Prevention – Directors have positive evidence of what works in terms of prevention across a range of interventions, including what delivers a positive Return on Investment.  But they want to know more in order to go further and faster.  At the moment, operational priorities and financial pressures prevent them from doing more.  The next policy cycle of the Better Care Fund is an opportunity to reorient the fund toward prevention, enabling health and social care partners to deliver the right care at the right time and place.

Hospital to Community – The social care workforce is fundamental to the success of community-based health and social care. This report underscores the importance of investing in the workforce, from local social care professionals to allied health roles such as physiotherapists and occupational therapists, which are essential to easing pressures on health and care systems alike.

Analogue to Digital – Finally, access to joined-up health and social care data is transformative in understanding people’s needs and making informed, effective policy decisions. While Client Level Data is making strides, further collaboration is needed to unlock the potential of integrated data across health, housing, welfare, and social care—empowering people with more choice and control over their care and informing sound policy and financial decisions.

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I’m Victoria, the author of Carer Mentor. You can read more about me and why I publish Carer Mentor here.

Over the last couple of weeks, between catching up on sleep during a short respite and medical appointments, I’ve been researching and sharing feedback with other carers on this NHS Consultation and Virtual Wards.

It was a rollercoaster: reading the questionnaire, sharing thoughts, and feeling despondent. Then, I saw the changes to the consultation site—free-form feedback, space for ideas, and the ability to see ideas from other people!

These are not directed prompts but free-form ideas you can “LIKE” and comment on. [it’s a great idea, but on Sunday, 17th Nov., the ability to comment on improvement ideas seems to be disabled 😳🙄]

This NHS consultation is important. I have no association with its authors or reason to promote this except the most obvious one—I want a better healthcare system as soon as possible.

A CALL TO ACTION

UK residents: click here or the image to provide feedback on the NHS.

NHS = The National Health Service1

Consultation opened on 21st October 2024 and says it’ll run for ‘several months’.

On the website, you’ll see a video from Wes Streeting, Secretary of State for Health and Social Care of the United Kingdom.

You’ll need to create an account and fill out the questionnaire. Once you’ve filled out the questionnaire, you can provide general feedback on your NHS experiences as a member of the public or as an organisation.

The website also provides space for your ideas for change and open feedback.

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Dear US Based Readers, You may be interested to read this:

Honoring Rosalynn Carter’s Legacy by Prioritizing Caregivers

By Dr. Jennifer Olsen, CEO, Rosalynn Carter Institute for Caregivers (January 2024)

Today, RCI (Rosalynn Carter Institute) is a leading advocate promoting caregiver health and strength. As a Healthy People 2030 Champion, RCI takes action to transform the future of caregiving by building cross-sector partnerships, leading research projects and strategic initiatives, developing and implementing evidence-based programs, and advocating for systems-level policy change at the state and federal level.

Profiles in Caring
Behind this project to develop Profiles in Caring is the idea that caregivers’ needs and experiences must be centered more in conversations throughout a care journey. While recognizing that all caregivers have unique needs and experiences, we found that there are phases of caregiving to which many caregivers can relate.

Using these phases, and the stressors and the goals associated with them, we were able to develop 9 unique profiles to help locate caregivers on the continuum of their care journey

Continue reading here

I’m a little envious!

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Feel free to stop reading here. Alternatively, have a roam around these facts and references that I collated to try and get my head around the NHS, Social Care, the healthcare funding and what it all means for me as a caregiver AND as someone who will need care in the future (unless I move elsewhere).

The NHS UK Healthcare System Consultation

The rest of this article shares references with some commentary.

My Priority Concerns

Essential Background information:

1. The Darzi Report

2. Predicted health trends - Lancet Report

3. The NHS is one of the World’s largest employers

4. NHS 'FTE' workforce numbers Breakdown by roles

5. ‘How does the NHS in England work and how is it changing?’

6. How funding flows in the NHS

7. What's the difference between 'healthcare' and 'social care'?

8. What is Social Care in the UK. The Kings Fund Home Truths Report 2016

9. The Kings Fund: How is social care paid for?

Bottom Lines

My Priority Three Concerns

The questionnaire highlights three ‘shifts’

Introducing the 3 shifts

The next questions relate to 3 ‘shifts’ – big changes to the way health and care services work – that doctors, nurses, patient charities, academics and politicians from all parties broadly agree are necessary to improve health and care services in England:

Shift 1: moving more care from hospitals to communities

Shift 2: making better use of technology in health and care

Shift 3: focussing on preventing sickness, not just treating it

Shift the care to whom exactly in communities?

1. As a caregiver, I’m concerned that a productivity culture will put more burden on caregivers before more resources, GPs, pharmacies, and social services are established in our communities. Based on my recent experience with the ‘Virtual Ward’ system.

   1. Increased productivity can mean using Virtual Ward systems to pass the patient home with some equipment, and they have to report readings, reducing hospital time and costs. However, faster discharge can easily result in an unsafe discharge. Several carers I’ve interacted with have had unsafe discharges. Loved ones were discharged before fully recovered to free up a bed, and there was no support at home. Everyone feels pushed to leave. Carers are assumed to take on all the mental stress and clinical care and fight for support.

2. The recent Autumn Budget changes, set to start in April 2025, increase the National Living Wage, National Insurance Contributions, and Small Business Tax, impacting the operational feasibility of already struggling GP practices, care organisations, pharmacies, and in-community support services.

   1. In the last few days, pharmacies have decided that in January 2025, they intend to reduce the number of hours they are open and stop home deliveries to reduce operational costs and respond to the Autumn Budget. Imagine the impact on those with chronic illnesses, immunocompromised patients and rural residents.

3. There’s an assumption that the NHS encompasses all care. It does not. The NHS is NOT Social care. They are separate. GPs, pharmacies, hospice care, and care organisations are privately owned and partially funded/contracted by the NHS/social care services. There is little/no available support outside a hospital.

   A Patient is assessed in terms of their needs (basically, are the needs severe enough?) and in terms of their means do they have less than £23’250.2

   BUT before talking about finance, the questions need to focus on the availability of care services. Local authorities contract private agencies and whatever is available. Availability, then finance, and somewhere, maybe, quality can come into the equation.

These are only three of my concerns!

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Essential background information

Here’s what I’ve been wading through. Some key reference points

1. Link to the Darzi report:

Independent Investigation of the National Health Service in England by The Rt Hon. Professor the Lord Darzi of Denham OM KBE FRS FMedSci HonFREng (September 2024). HTML summary here.

2. A Lancet Publication in July 2017

Forecasted trends in disability and life expectancy in England and Wales up to 2025: a modelling study Guzman-Castillo, Maria et al.The Lancet Public Health, Volume 2, Issue 7, e307 - e313

‘The number of older people with care needs will expand by 25% by 2025, mainly reflecting population ageing rather than an increase in prevalence of disability. Lifespans will increase further in the next decade, but a quarter of life expectancy at age 65 years will involve disability.’

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I wanted to clearly delineate what the NHS is and what it doesn’t do, but if years and years of consultants and experts can’t, why did I think I could!

I got STUCK! The information is opaque. The jargon is alphabet soup.

In my inability to decipher the NHS versus social care. Scope of Work and Funding.

3. The NHS is one of the World’s largest employers

How it delivers services and is funded is taking me hours to decipher.

Source: US Department of Defense, NHS Digitial, World Bank. Taken from NHS Confederation

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4. NHS 'FTE' workforce numbers Breakdown by roles

Taken from the NHS Confederation

Source: General practice workforce, NHS HCHS workforce statistics

ALL Staff:

!! Click on the image and take a look at the GP staff as a filter of the workforce numbers

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5. How does the NHS in England work and how is it changing?

Do you understand who does what?

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6. How funding flows in the NHS

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. 

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7. What's the difference between 'healthcare' and 'social care'?

• ​A healthcare need is related to the treatment, control or prevention of a disease, illness, injury or disability. And the care or aftercare of a person with these needs.
  

• A social care need is focused on providing assistance with:

  • The activities of daily living

  • Maintaining independence

  • Social interaction

  • Enabling you to play a fuller part in society

  • Protecting you in vulnerable situations

  • Helping you to manage complex relationships

  • In some circumstances, accessing a care home or other supported accommodation

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.​

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8. What is Social Care in the UK. The Kings Fund Home Truths Report 2016

Timestamp 1:38 The number of people receiving formal care from the state has actually reduced over the past six years, despite this increase in need.

“26% Fewer people receive council support”

Timestamp 1:43 Our research shows that the social care system as it stands is struggling to meet the needs of older and disabled people.

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9. The Kings Fund: 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.

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Bottom Line

Please provide your feedback on the Department of Health and Social Care website.

I don’t have the time or energy to try and understand the whole system. There are too many people (in my humble opinion), many who are well intentioned and experts in their field…who are discussing things within the box of what’s happening.

Carers,and anyone in the UK, WE have an opportunity to put all that information aside, and tell people what we need and why!

I can’t tell you the number of times I’ve heard from someone in the hospital, ‘Yes, but I just need this bit of information’, or ‘that’s not my job, I just need to check this off.’ OR today, ‘I’m not clinical, I’m an assistant, I don’t know that we just do what the doctor has asked for.’

The transactional, single-action, tick box nature of the system means the right hand doesn’t know what the left is doing. It’s certainly not a whole body, holistic or long-term quality of life perspective.

The Kinds Fund Home Truths Report in 2016 highlighted that over 6 years [2010 to 2016] 26% fewer people receiving council support, despite the increasing need and demand for support. We all know about demographic shifts. So, how are these needs being met, if at all? Who’s having to do more care-giving, and what does this mean for the increased number of people needing more care?

Compounding these increased needs, carergivers are not recognised as the ONLY ones who have complete oversight of a patient’s needs and medical history. We’re not valued as knowing more than the person ticking boxes, we’re not paid, yet we have to repeat information at least 5 times during the course of an emergency admission.

I’ve curated relationships with our doctors and specialist nurses who have been and are amazing over the last four years. They know, I have a cheat-sheet of my mother’s medical history and have things organised (understatement). I count our blessings for these empathetic medics and nurses.

It’s really hard for me to feel confident and trust there will be timely action in hospital Emergency room and admission situations, after everything we’ve experienced.

I never assume the correct information has been received, and close every loop I can.

This year, Carers Rights Day is on Thursday 21 November 2024 – and this year’s theme is about raising awareness of the rights the UK’s 5.7 million unpaid carers are entitled to, and to help them get the support they need and the recognition they deserve.

Everyone can play their part in ensuring that the burden of care in communities does not automatically fall onto the already over burdened shoulders of Carers.

Everyone has an opportunity to share their experience, without the fear of backlash on the care for a loved one on a ward. (Experiences with Dad’s care 2018 and 2019).

Let’s Raise our Voices

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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!

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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

1. UK Carers Allowance June 2024, this is now £81.90 for 35 hours (£2.34/hour). This is unchanged [Oct 2024]

2. 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.

3. 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)

4. 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’.

5. 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.

6. 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.

7. 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.'

8. 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.

9. 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).

10. 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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I’m Victoria. You can read why I’m publishing Carer Mentor here: Who Started Carer Mentor and Why?

This will be a rapid article because I have limited energy and breath and keep coughing my throat out whilst I type.

I need to raise your awareness, especially for Caregivers in the UK, or as we’re labelled, ‘UNPAID CARERS.’

At this moment, I am COVID positive. Alongside this, I have a severe Streptococcus sore throat (umm not just sore but raging burn, with involuntary cough spasms I can’t control easily). My side muscles and chest muscles hurt from coughing. The ‘white spots’ at the back of my throat were tell-tale signs of the infection. SO this means there is a heavy viral COVID load in my body AND a heavy bacterial load as well. Lovely!

I paid privately for a vaccination at the earliest possible moment, September 19th.

Following a visit from family for my mother’s birthday she was hospitalised Friday 27th of September, and I tested positive Saturday 28th.

Learning 1: It takes a few weeks, NOT 1 week, for your body to build the antibodies and immune response to COVID after a booster vaccination.

My Mother has two different cancers and is immunocompromised, and we thought ‘pre-authorised’ to receive antivirals in the community setting. It took me from 10 am to 3 pm to get the ‘SMS text message’ prescription. It was 5 or 6 ‘triage’ lists of questions to get THAT text message, and people were more concerned about ‘eligibility’ to qualify than her present state of health.

I’ll share more about the events of Friday, 27th September, in another article.

Learning 2: I was able to do what ALL caregivers do—care for my chronically sick loved one, who cannot advocate for herself. My mother had a temperature of 40’C = Febrile Fever. Seizure and convulsions et al.

If you or your loved one is immunocompromised, tests COVID positive and has a temperature over 38°C, CALL EMERGENCY SERVICES. It’s imperative to get help.

[GET some COVID Test kits asap}

In the hospital, she had a confirmed diagnosis of COVID and pneumonia (physicians were trying to diagnose between pneumonia and sepsis).

I ensured no unsafe discharge overnight on September 30th.

I ensured we checked for Pulmonary embolisms (D Dimer Test)

Learning 3: When caring for your loved one AND you are COVID-positive you may get Tachycardia (Pulse rate 100 - 110), a temperature (over 38 ‘C) and a severe headache. TELL your doctor.

If you’re sitting in a hospital room at 8 p.m., demand some paracetamol and get a wet towel to put on your head and around your neck to reduce the temperature. Meditation helps reduce your pulse rate and increase your oxygen saturation.

Learning 4: The sore throat is dry and burns. Soothers, lozenges, like Strepsils, or organic honey did not work for me. All these dried out my throat even more, and the cough returned with a more severe vengeance.

Learning 5: Because there was no bed available in the Respiratory ward in the hospital, my mother was discharged from the hospital itself to use the ‘Virtual ward’.

First, there were errors on the discharge letter - we’re still waiting to be surprised with a 100% accurate letter since 2015.

Second, with all the stress of hospitalisation (incl. PTSD flashbacks of Dad’s falls and nights spent in A&E), with being ill myself, I had to learn what they wanted me to measure, record and submit.

Learning 6: Be Aware of your loved ones being forced, pushed to take their own ‘observations’ BP, temp, oxygen, pulse, and respiratory breaths, record them on an iPAD and submit them.

Of course, they have to be able to connect to their home WiFi and call the Virtual Ward team to ensure their doing what they’ve been tasked to do.

So, the clinical monitoring burden has been shifted onto loved ones, carers or the patient themselves right at the most sensitive time when everyone is stressed, tired and worried (in my case, with worsening COVID symptoms).

There may be a place for this, but there is NO WAY; my mother could have done this herself. The hospital, NHS protocol uses caregivers who are not paid as their free resource. It feels like the system is using our love and goodwill for their cost savings and productivity.

Here is the crucial information I want to share with you:

• GET VACCINATED as soon as possible for FLU AND COVID

UNPAID CARERS in the UK: If you are under 65 years of age and have no underlying health condition, you are NOT eligible for the free COVID booster.

• It is possible to pay for a vaccination privately the cost is between £80 - £100

• I used Pharmadoctor to find a private pharmacy

• 

• Carers UK information: THIS INFORMATION IS DIRECT COPY from their website

  • COVID-19 is more serious in older people and in people with underlying health conditions. Vaccination against COVID-19 is very important to protect people from serious illness and to support NHS and adult social care provisions.

    Who is eligible for the COVID-19 vaccine in Autumn/Winter 2024/25?

    The groups to be offered a COVID-19 vaccine in autumn/winter 2024/25 are:

    • residents in a care home for older adults

    • all adults aged 65 years and over

    • persons aged 6 months to 64 years in a clinical risk group, as outlined in tables 3 and 4 of the COVID-19 chapter of UK Health Security Agency (UKHSA) Green Book on immunisation 2

    • pregnant women

    • frontline health and social care workers and staff in care homes for older adults

    The recommendations for who is eligible for the vaccine has been decided by the Joint Committee on Vaccination and Immunisation (JCVI), based on the latest scientific evidence.

    The current Government COVID-19 advice is available here.

    If you are unsure if you are eligible for the COVID-19 vaccine, please contact your GP.

    When does the COVID-19 vaccination programme begin?

    The COVID-19 vaccination campaign will begin on Thursday 3rd October 2024, at the same time as the Flu Immunisation programme. If you are eligible for a flu vaccine, you may be able to have them at the same time – or you can have them separately.

    How to book a COVID-19 vaccine

    Eligible people will begin receiving invitations from the NHS to get their jabs, while GP practices and other local NHS services will also be contacting people to offer both vaccines. Anyone eligible can also book their own vaccinations via the NHS website, by downloading the NHS App, or by calling 119 for free if they can’t get online.

    Why should carers be concerned about COVID-19

    If you are caring for an elderly, ill or disabled relative or friend we encourage you to check if they are eligible for the COVID-19 vaccine. The vaccine will help protect the person you are caring for from serious illness.

    While unpaid carers are not eligible for the vaccine this year, you may wish to take extra care and precautions if you are caring for someone who is vulnerable. See the government guidance 1 for more details about how to stay safe this winter.

    Have unpaid carers been eligible for the COVID-19 vaccination in the past?

    Yes, during the pandemic in particular we campaigned for unpaid carers to be in the priority list for vaccination, which we achieved. Carers said that, as the primary carers of people with key vulnerability, getting ill not only posed a risk to the person they cared for, but not being able to care would put additional strains on the health and care systems.

    What are unpaid carers raising with Carers UK now?

    Carers are telling us that they are worried about passing on the virus and posing a risk or not being able to care for the person with significant conditions or disabilities. Some have told us that they are sick with worry.

    What is Carers UK doing about carers’ concerns

    We are encouraging all carers to make sure they or the person they are caring for have had the COVID-19 vaccine, if they are eligible. You can access our COVID-19 guide for carers 1 for more information.

    We [Carers UK] are concerned about carers not being eligible for the COVID-19 vaccine this winter and have raised this with senior politicians at the Labour party conference.

    Key links for more information about the COVID-19 vaccine

    • NHS England

    • Government guide to COVID-19 autumn vaccination 1

    • Carers UK COVID-19 advice

Personal commentary based on Carers UK data:

As I cough my throat up here, I’m appalled at the idiotic accounting that someone may have made in their logic of eligibility for the COVID Booster Vaccine.

Unpaid carers who save the economy £162 Billion are at risk of NOT being able to care for their loved ones this Winter, because they will fall ill with COVID.

Quote from Economic Impact of Care by Carers UK1

Unpaid carers in England and Wales contribute a staggering £445 million to the economy every day – that’s £162 billion per year (Petrillo and Bennett, 2023).

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 funding (Petrillo and Bennett, 2023).

Immunocompromised patients in the UK cannot easily acquire antivirals through the ‘centralised system’ - I tried it took 6 hours just to get a prescription and to be told, I needed to find a pharmacy that would order it for me to have it the next day. In the 6 hours I was trying to get a prescription authorised Mum’s temperature escalated severely and we needed A&E.

IF you or your loved one is COVID positive, and has a temperature over 38’C call emergency services. Ambulance. Don’t sit waiting in A&E you will be infecting other people. Call an ambulance. Oxygen is important.

Imagine - I’m tech savvy, pushy and an experienced communicator with medical and scientific knowledge….and I was in tears with a GP on the phone on Thursday 3rd of October, because he was the FIRST medic to empathise with our situation.

Since I’d answered all the questions, on the e-consult form online, used the medical terms I knew and his short questions, he readily prescribed Amoxicillin.

BE PREPARED!

PLEASE SHARE THIS WITH ALL YOUR FRIENDS, FAMILY AND CHRONICALLY ILL CONTACTS

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This won’t be a tidy article because the fire in my belly is raging.

Carers in the UK are now seen as fraudsters, ‘owing the government’ repayments of Carers Allowance. Can you get your head around these facts?

Bottom lines:

• On an assumption, you have the emotional capacity and can find a way for your loved one to be okay whilst you’re away.

• IF you care for 35 hours, you’re eligible to get Carers Allowance (£81.90) and can work to receive up to £151.

• IF you go a few pence over £151 (after tax expenses), you forfeit one hundred per cent of the £81.90.

• BUT this ‘debt’ to the benefits department stacks up over time because you’re not informed. For example, the £81.90 per week racks up to £11k, in Henry’s case below.

Case study - Henry

Henry cares for his wife. He went over the earnings threshold within the last few years and had an overpayment of £11,000. When Henry got a new job, he notified the DWP Universal Credit unit and was told he didn’t need to do anything more. However, he was later notified that he had to pay back an overpayment which he felt was “so wrong on so many levels…I was ashamed and felt like a criminal.” Henry asked to pay back the lowest amount possible, which he can “just about afford” to pay. (Carers UK Report)

Wage + Carer’s Allowance: £81.90 + £151 = £232.9 for 35 hours caring and 13 hours paid work , that’s £4.85/hour. This is below the national living wage - anyone over 21 years of age, gets £11.44/hour 2024/5 data.

SO someone working is paid at the higher national living wage rate because, wouldn’t you know it, a salaried income is economically more valuable than caring for a loved one at home?

SO, the unpaid carer has to reduce their ‘working hours’ to stay within the ‘limit’ of £151.

Don’t forget this is not about like-for-like work. The unpredictability of unpaid caring appointments, paperwork, chasing prescriptions, and hands-on caring exhausts and emotionally drains caregivers daily, 24/7. It is not a 9-to-5 situation or circumstance. It’s impossible to plan when someone has unpredictable symptoms.

SO, now people like Henry are repaying the ‘debt’ back to the government and feeling like they’re labelled as ‘criminals and fraudsters’ by people checking boxes?

• the value of carers’ support is worth a staggering £162 billion per year, yet many carers are struggling financially.

• The rate of poverty for those in receipt of Carer’s Allowance has doubled in a decade1 and unpaid carers are increasingly struggling to make ends meet as well as being able to meet basic costs, such as food and energy2

So unpaid carers (this is not my label; it is the government label to normalise family and friends doing the caring versus a salaried carer) are filling the gap of a second NHS carers (ie saving the government £162 billion per year) and now need to give what little they have back to the government. Marginalised as unpaid carers and now vilified as fraudsters.

I’m angry at how this could be happening to caregivers in the UK and deeply concerned for carers who are now in debt and pushed further into depression.

Please read the information and Carers UK’s report on Carer’s Allowance overpayments.

With the recent government change, there may be a glimmer of light and hope in Emily Holzhausen’s email news that I received this morning.

Worth noting: Charities must tread a fine line with every statement they make to push for change with the government. I continue to be impressed by the Carers UK work.

If you or someone you know needs support, please call The Carers UK telephone Helpline is available at 0808 808 7777 from Monday to Friday, 9am – 6pm (excluding Bank Holidays), or you can contact them by email (advice@carersuk.org).

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The email I received

Emily Holzhausen CBE, Director of Policy and Public Affairs of Carers UK

I wanted to share a copy of Carers UK’s report on Carer’s Allowance overpayments, published today. 

This is an issue Carers UK has been campaigning on for some time, and we are really pleased that Sir Stephen Timms, Minister for Social Security and Disabilities, has agreed to our request to meet with Carers UK and a group of unpaid carers later today to hear first-hand from them about their experiences. 

As many of you will be aware, the earnings limit for Carer’s Allowance is £151 per week, and going over this limit by just a few pence means carers need to pay back 100% of their Carer’s Allowance for that week - £81.90 at 2024/25 rate.3

Large overpayments have a devastating impact on unpaid carers. News of the overpayment also often comes as a shock to most carers and takes many years to repay, causing financial difficulties and having a serious impact on their mental health and wellbeing. We also found that many carers decided to leave employment altogether or cut back on their hours as a result of the overpayment.

Carers UK’s recommendations to the DWP include: 

• Sending alerts to carers when their earnings potentially breach the earnings limit 

• Improving information sharing and processes within the DWP 

• Improving the information available to carers and their interaction with DWP 

• Raising the Carer’s Allowance earnings limit to 21 hours per week and pegging it to the National Living Wage 

• Taking steps to remove the hard ‘cliff edge’ of the earnings limit and replacing this with a taper to earnings 

• Writing off substantial overpayments where carers could have been notified sooner 

• Conducting a full review of Carer’s Allowance level and its eligibility criteria   

We are continuing to gather the experiences of carers who have had an overpayment of Carer’s Allowance and they can be shared with us anonymously. If this is you, then please click here.   

If you are worried about overpayments and Carer’s Allowance, please look at the advice on our website.

We are grateful to the Lloyds Bank Foundation for England and Wales for providing a grant to Carers UK to work to address the issue of overpayments of Carer’s Allowance and the earnings threshold.

Kind regards,

Emily Holzhausen CBE

Director of Policy and Public Affairs

Carers UK

Direct Excerpts taken from the report by Victoria :

The main reason for an overpayment is earnings over the Carer’s Allowance limit, making up over two thirds (70%) of cases.4 The earnings threshold is set at £151 (2024/25) per week after deduction of tax, 50% of pension contributions and other allowable expenses. If the carer is even a few pence over this limit, they lose 100% of their Carer’s Allowance which is currently £81.90 per week in England, Wales, Northern Ireland and Scotland.

What has changed in the past five years? The National Living Wage has risen faster than the earnings limit, thereby reducing carers’ ability to participate in paid work alongside their caring role. This also means that with every National Living Wage increase in recent years carers have had to make an active decision to reduce their working hours or to leave paid work altogether. Over the last five years, the number of hours carers have been able to work earning the National Living Wage, while also receiving Carer’s Allowance, has shrunk from just under 15 hours a week in 2019 to just over 13 hours and 12 minutes from April 2024 (Unpaid carers in employment forced to reduce their working hours for the fifth consecutive year as Carer Poverty Coalition publishes its demands of government. 21 March 2024)

In 2019, the Work and Pensions Select Committee inquiry into overpayments of Carer’s Allowance found that “administrative failings” by the DWP had led to substantial overpayments.

A National Audit Office (NAO) report in 2019 found that DWP staffing levels in the past were not adequate to deal with overpayments quickly enough.

Two-thirds of carers with earnings-related overpayments of more than £2,500 could have had been notified sooner if the DWP had had sufficient staff in place. More recently, DWP stated in a response to a Parliamentary Question that only around half of the number of overpayments flagged by the Verified Earning and Pension (VEP) system had been reviewed by the DWP.

In May 2024, the DWP published a strategy document about tackling fraud in the welfare system. In this, the DWP said that it is progressing “an enhanced notification strategy” as part of its existing commitment to improve customer engagement. This strategy will consider ways of notifying carers at risk of overpayments, such as sending targeted text messages or emails to alert claimants and encourage them to contact the DWP about potential overpayments. However, no timeline has been provide for this work.

P.S. I’ll keep you updated on this news. This is starting to feel a little like the Post-Office-Scandal. New government, new policies?

Please care for the caregivers: sit with the loved one, pick up a prescription, drive them to an appointment. We can help each other

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Articles I published in Carers Week:

If you’re here for the first time, ‘Welcome!’ You can learn more about Carer Mentor, here. ‘Why did I start Carer Mentor?’

Caregivers in the UK are people who care, unpaid, for a family member or friend with an illness or disability, mental health condition or addiction.

Click here to learn more about Carers Week.

Carer Mentor is not directly associated with Carers UK. The organisation has supported me in their advice and through the anonymous carers online forum Carers Connect.

On this third day of Carers Week, Carers UK is highlighting Caregivers who are underage.

Caring is hard on anyone, but it can be especially hard for carers who are underage. Ill health in the family can come on suddenly, and some young people are forced into their roles by circumstance. If you or someone you know is a younger carer, there is help and support out there for you.

Carers Trust supports Young Carers who are under 18 (legal definition) and Young Adult Carers, someone who is 14–25.

One of the main obstacles for younger carers is self-identification. Without identifying themselves as a carer, or knowing what a carer is, it can be very difficult to access support. Many carers see their relationship with the person they care for as simply a child, parent, friend, or neighbour, and don't recognise the word 'carer' as a term they would use. This is why identification by health professionals is so important.

If you or someone you know is a younger carer, there's support out there for you. The Carers Trust runs a network of local carer organisations in England, Scotland and Wales, offering information, advice, practical support and/or care in the home to unpaid carers of all ages. Many of these organisations have specific services dedicated to younger carers.

This guide by Carers Trust shares The Rights of Young Carers & Young Adult Carers.

Direct quotes from the guide to promote awareness of their rights:

These are your rights. As a young carer or a young adult carer you have a right to be supported and to get the help you need.

You have these rights whether you look after someone every day or from time to time, or if you do a lot of or a little caring.

You shouldn’t be doing a caring role that:

• Makes you feel worried, sad or lonely.

• Makes your health worse.

• Means that you miss out on time with friends.

• Means you do worse at school, college or university.

• Stops you getting a job or keeping a job.

• Stops you wanting to achieve your goals for the future.

‘Assessment’ means a discussion with you to find out information about:

• You.

• The caring you do.

The information is needed so that the person doing the assessment can make decisions with you about:

• Whether your situation is okay.

• If more support would help you and the person you care for.

An assessment for a young carer or a young adult carer isn’t like an exam or about how good you are at supporting the person you care for. The focus is on whether the council is doing enough to support you so that you have the same chances as other people your age.

The assessment is free.

There are three types of assessments for young carers and young adult carers, depending on how old you are. You will find information about them in this booklet:

1. Young carer’s assessment for carers under 18.

2. Transition assessment for young adult carers before they are 18.

3. Carer’s assessment for all carers aged 18 or over.

UK Resources

• Click here for General Advice and Resources for Young Carers and Young Adult Carers

• Carers Trust resources

• The Children’s Society. Advice for Young Carers

• The Mix. Support and resources for under 25-year-olds

• Young Scot is Scotland's national youth information service. Visit the website for stories from other young people on their experience of being a carer and information on caring for someone.

• Meic is the helpline service in Wales for children and young people up to the age of 25. Freephone: 0808 80 23456 or visit the website for other ways to get in touch.

Carers Trust: Young Carers & the need for more Financial Support.

Wellbeing and mental health - [from the website]

• Carers Trust has a wealth of resources in relation to mental health for young carers and young adult carers.

• Whatever you're going through, a Samaritan will face it with you. They're there 24 hours a day, 365 days a year, wherever you live in the UK.  You can call Samaritans on Freephone: 116 123, 24 hours a day, seven days a week or visit the website for more ways to get in touch. Contact Samaritans Cymru for a Welsh language service.

• Mind provides information and support for people with mental health problems in England. Mind Cymru is Mind in Wales providing information and support in English and Welsh.

• Young Minds offers information about looking after yourself, coping with mental health issues, feelings, symptoms and conditions, wherever you live in the UK. Services include a free 24-hour crisis messenger if you are experiencing a mental health crisis and a Parents Helpline for parents across the UK.  Find out more on the Young Minds' website.

Carers UK Helpline of trained experts: For information and signposting, the telephone Helpline is available on 0808 808 7777 from Monday to Friday, 9am – 6pm (including Bank Holidays). 

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This information is quoted directly from several sources to ensure accuracy. (Carers Week June 10 - 16)

These two UK benefits are NOT means tested. Other care support and benefits can be means-tested. This AGE UK page provides some information on this.

Unpaid carers receive less than the National Living Wage in 2024.

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Key sources:

• Carers UK information. The telephone Helpline is available on 0808 808 7777

• mobilise. has a summary of the information, including how to make a claim.

• UK Government website

For Caregivers - What is Carer’s Allowance?

If you spend at least 35 hours a week caring for someone with an illness or disability, you may be eligible for extra money called Carer’s Allowance.
It is paid at a rate of £81.90 per week (2024/25).

Who can claim Carer's Allowance?

From Carers UK

• You look after someone for at least 35 hours a week.
• You don’t earn more than £151 per week (after deductions including tax, national insurance and certain expenses). Find out more about the earnings limit.
• The person you care for receives a disability benefit (see below).
• You’re aged 16 or over.
• You’re not in full-time education.
• You meet UK residence and presence conditions and UK immigration conditions – Citizens Advice has detailed information on this. Contact Advice NI if you live in Northern Ireland.

For more details about each of the above requirements, read on and take a look at our Carer's Allowance factsheet. 

Carer’s Allowance is a taxable benefit - it is considered income. This may affect how much a carer receives from other benefits, such as Universal Credit.

The Carer Mentor Calculation:

IF you’re eligible you’d receive £81.90, IF you can work to earn ONLY £151 that’s £232.90 for 35 hours of caregiving.

This means for caring for your loved one, you COULD receive £6.65 per hour.

The National Living Minimum wage for 21-year-olds and older is £11.44.

If you get State Pension you cannot get the full amount of both Carer's Allowance and your State Pension at the same time.

A key points to note - From the UK Government Website.

If your pension is £81.90 a week or more, you will not get a Carer's Allowance payment.

If your pension is less than £81.90 a week, you'll get a Carer's Allowance payment to make up the difference.

For those receiving care - What is Attendance Allowance?

If you have a long-term illness or disability and you’ve reached State Pension age, you may be entitled to a benefit called Attendance Allowance. 

To find out more about this benefit and if you or a loved one might be eligible to receive it, read more below.

If you’re under State Pension age, you may be eligible for Personal Independence Payment (PIP).

If you’re 16 or under, you may be eligible for Disability Living Allowance (DLA).

Attendance Allowance is extra money if you have a long-term physical or mental condition or disability. It doesn’t matter what your condition is – what matters is how it affects you. If you’ve reached State Pension age and need help with personal care, or need support to check you’re ok, you may be eligible.

Attendance Allowance isn’t means-tested, so it doesn’t matter what your income or savings are. You can get Attendance Allowance even if you’re working or studying.  

If you’re awarded Attendance Allowance, you can spend it on whatever you want that makes life easier. You don’t have to spend it on paying for care. However, your local council or trust can take Attendance Allowance into account when working out how much you need to pay for care services. 

Getting Attendance Allowance won’t reduce your other benefits. In fact, it could even increase them. If you have a carer, claiming Attendance Allowance may help them qualify for benefits such as Carer’s Allowance. You and/or your carer may be entitled to other extra help too. 

If you’re a carer, with a long-term condition or disability, you can claim Attendance Allowance for yourself and it won’t affect any Carer’s Allowance you may be receiving. 

For 2024/25, the rates are: Higher £108.55 per week, Lower £72.65 per week 
You’ll receive the higher rate if you need help or supervision during the day and at night, or if you’re terminally ill. 
You’ll receive the lower rate if you need frequent help or constant supervision during the day, or supervision at night.

Carer Mentor Reflections

Imagine yourself still in turmoil after a medical change in your loved one’s health, trying to navigate all this.

I recommend contacting Carers UK helpline to discuss your specific situation. They are trained to support people who are trying to understand the complex system, the forms and what someone can expect. Don’t try to do this alone.

Carers UK Helpline. The telephone Helpline is available on 0808 808 7777 from Monday to Friday, 9am – 6pm (excluding Bank Holidays) or you can contact them by email (advice@carersuk.org).

The NHS itself is beyond breaking point. We experience waiting lists, long waits at A&E, and unsafe discharges where individuals feel pushed to go home so their bed is released for the next person.

‘Unpaid carers’ feels like normalising an unjust phenomenon and practice. Why are we normalising that carers do not receive a basic wage-benefit?

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Carer Mentor by Victoria is free to read. If you have the means and would like to support the publication, I welcome monthly (£6) and annual (£50) subscriptions. Thank you for your ongoing support.

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You can learn more about me Carer Mentor, here. ‘Why did I start Carer Mentor?’

Thank you for your comments, feedback and support of the mid-year assessment I published in this article: ‘How’s our Community Network going?’

Several people shared constructive feedback. You spoke, I listened, and I’m shaping the Carer Mentor Strategy.

June is a month of evolution for the website. You’ll see the homepage, resources and sections change over this month.

On the homepage, there’s a new Community space that houses:

• One Resource, Two Insights, Three Ideas: Each week, simple ‘1-2-3’ edits will be added for you to use.

• Useful Links for advice, info and ideas: organisations in the UK, USA, and Canada that have supported people I know or myself

• A community discussion space Caregiver Tips / Insights June 7 - 16 to share your questions and tips/ideas every week. We’re not experts, but we can share what’s worked for each of us.

This week is Carers Week (June 10 - 16th)

In the UK, the NHS defines an Unpaid Carer as

A carer is anyone, including children and adults who looks after a family member, partner or friend who needs help because of their illness, frailty, disability, a mental health problem or an addiction and cannot cope without their support. The care they give is unpaid.

The Theme for Carers Week is 'Putting carers on the map'. 

Carer Mentor is supporting Carers UK to galvanize activity in a general election year, to highlight the increasing pressures on carers and to campaign for much-needed recognition and support.

This includes raising awareness about the challenges carers face which impact on their finances, employment, health and wellbeing and ensuring policymakers and politicians take steps to better support carers’ needs.

This article leverages the research work of Carers UK.

FULL QUOTE Executive Summary of the Report ‘No Choice but to care’ Report, published Monday, June 10th, 2024

Millions of unpaid carers across the UK provide support to a family member, friend or neighbour due to a disability, illness or frailty due to old age. Yet a majority of unpaid carers have no choice but to take on a caring role. While providing unpaid care can be rewarding, it also comes with significant negative impacts on carers’ lives.

The low level of social security benefits, inadequate structures to support carers to stay in paid work alongside their caring role as well as a lack of time to take a break or to look after their own wellbeing means that unpaid carers often face lower financial resilience, fewer opportunities to continue with their career as well as a worsening of their physical and mental health. We need to see significant action from the next UK and devolved governments to help mitigate some of these negative consequences of caring and put in place a comprehensive package of support for unpaid carers, who help to hold society together as well as collectively contributing 162 billion every year through their caring role.1 Carers Week commissioned YouGov to carry out polling of the general public, including adults who are currently providing unpaid care.

The YouGov Omnibus polling, of nearly 6,500 people, found that:

• 62% of those who are currently providing or those who have previously provided unpaid care said that they had no choice in taking on the role because no other care options were available – this is around 10 million people.2

• The impact of caring has been more negative than positive for all areas unpaid carers were asked about, particularly for employment, finances and savings, and physical and mental health.

• By far the biggest negative impact has been on mental health with 63% of current and former unpaid carers saying that caring had a negative impact on their mental health, with 24% saying it had a ‘very negative’ impact. An estimated 10.1m current and former unpaid carers in the UK experienced a negative impact on their mental health as a result of caring.3

• Current and former unpaid carers also said that caring had a negative impact on their: 4

  • Physical health (53%) – around 8.5m people in the UK

  • Job and ability to work (48%) – around 7.7m people in the UK

  • Finances and savings (47%) – around 7.6m people in the UK

• Of those who said they had no choice about taking on a caring role, a greater proportion of current unpaid carers and former unpaid carers experienced negative effects of caring.

• Women fared worse than men due to the impact of caring; they were far more likely to say that caring has had a negative effect on their physical and mental health, employment, pensions and relationships.

• Those aged 45 to 54 were most likely to have no choice when taking on a caring role and were most likely to say that caring has had a significant negative impact on their finances, career and pensions.

Carers Week also commissioned a second YouGov Political Omnibus poll of over 4,200 members of the general public, which found that:

• 73% of the UK adult population said that the next government should provide more support for unpaid carers

• When asked about what the next government should focus on to support unpaid carers, the most popular issues picked by the general public were financial support for unpaid carers (53%) and investment in social care to enable unpaid carers to take a break (53%).5

Helen Walker, chief executive at Carers UK said:

Carer Mentor reflection.

The choice to care or not is the right of every person, but as you’ve read, not many can exercise that right due to the lack of infrastructure, support and finance.

We are the invisible backbone of the healthcare system, unpaid and burning out.

The hidden crisis of caregiving and unpaid carers in the UK is too big to put into a few sentences. Here is a final word from Carers UK

I hope that this election year, social and health policies will change.

I have seen real support and change within communities between neighbours, friends, family, and those non-blood kin families. Informal groups of friends and family tag-teaming support

In the absence of clear action from governments, here are some ideas of things you can do to offer hands-on active support to carer-friends.

Can YOU …

• be the one who will be the backup support in emergencies E.g. cover someone at work, take their dog if they need to go to hospital, come to the house in an emergency.

• be the driver to take someone to or from a hospital/doctor appointment,

• Offer to pick up medications from a pharmacy

• Offer to visit the loved one in the hospital so the carer doesn’t go twice, during visiting hours

• Offer to sit with the loved one at home so the carer can have a break

• Offer to cook a meal or get shopping

• OR simply offer to have a coffee and sit with your carer-friend to listen without trying to fix anything. (In my opinion ‘caresplaining’ is a lot more painful and frustrating than ‘mansplaining’).

Please be the change that we need for each other. Check on someone who’s a carer.

Carers UK Helpline of trained experts: For information and signposting, our telephone Helpline is available on 0808 808 7777 from Monday to Friday, 9am – 6pm (including Bank Holidays). 

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Summary of Press Release.

The Carer’s Leave Act which gained Royal Assent on 24 May 2023, provides employment rights for people balancing unpaid caring responsibilities with paid employment. (Article from Carers UK below). ‘The Act supports retention and recruitment, and the health and wellbeing of employees with caring responsibilities.’ 2.3 million carers who are employees will be entitled to the new right. This new right, encourages employers to create carer-related policies and supports carers' health and wellbeing. ‘The Act is expected to bring economic gains for the Treasury, save UK companies up to £4.8 billion a year in unplanned absences and a further £3.4 billion in improved employee retention, and improve finances for carers.’

Carer Mentor’s Questions and points for consideration:

• It’s taken years of time, effort, and campaigning for Carers UK (charity) and its supporters to achieve the legal right for carers to have ‘one week’ to support the person they care for.

• An estimated 2.3 million people in the UK will benefit from this, but there are approximately 5.7 million unpaid carers.

• If carers choose to seek employment on top of carrying the burden of caring and are employed, they can only earn a maximum of £139 per week. If we add this to the Carer’s Allowance of £81.90 as of April 1st 2024 (for carers who care a minimum of 35 hours), this means Carers receive £220.90 per week, dismally below the national living wage (£6.31/hour versus £11.44/hour for people over 21 years of age 2024/5).

• Eligibility quoted from Carers UK: ‘You may be able to claim Carer’s Allowance if all the following apply:

  • You look after someone for at least 35 hours a week.

  • You don’t earn more than £139 per week (after deductions including tax, national insurance and certain expenses).

  • Live in England, Scotland, or Wales for at least two of the last three years

  • The person you care for receives a disability benefit

  • You’re aged 16 or over.

  • You’re not in full-time education

• Carer’s Allowance is a taxable benefit, which means that it is considered income.‘

From Carers UK 15 January 2024 Press Release:

• 56% of carers juggle paid employment alongside 35 hours or more of unpaid care.

• 32% of carers of working age have given up work to care and 27% have had to reduce their working hours.

• 24% of working age carers say they gave up work or cut hours because of a lack of social care services.

• 20% of carers who gave up work to care said that an unsupportive workplace was one of the reasons for leaving employment.

If you have any questions - call the Carers UK Helpline

UK 0808 808 7777 from Monday to Friday, 9am – 6pm (excluding Bank Holidays) or you can contact them by email (advice@carersuk.org). If you have a general enquiry, email info@carersuk.org

This next section is from the Carers UK Website.

About the Carer's Leave Bill - and Carers UK's support

A right to Carer's Leave is an issue that Carers UK has campaigned on for a long time. Last June, this took a firm step forward with the introduction of a Private Members' Bill on Carer's Leave, by Wendy Chamberlain MP, the Liberal Democrat MP for North East Fife. Carers UK has worked closely with Wendy in the passing of the Bill, which gained Royal Assent and became the Carer’s Leave Act on 24 May 2023.

The Bill's support

Thank you to everyone who supported the campaign we have run over the past year to ensure the Carer’s Leave Bill was successfully passed. Your interest and support has been invaluable.

We were delighted to gain the support of leading employers such as Centrica, TSB, Phoenix as well as small employers such as Agenor Technology, industry bodies such as the Chartered Institute of Personnel Development, unions such as Unison, local government such as the Local Government Association, the Association of Directors of Social Services and Portsmouth City Council, national charities such as Age UK, MS Society and Stroke Association, medical bodies such the Academy of Royal Medical Colleges, and local and national carers organisations such as Caring Together, Sheffield Carers Centre, York Carers Centre, The Coalition of Carers in Scotland, Carers Trust, Gaddum, Wales Carers Alliance and many more.

The need for Carer's Leave

Passing this Bill will provide much needed employment rights for people who juggle their unpaid caring responsibilities with paid employment.

Prior to the coronavirus crisis, almost 5 million people were juggling paid work alongside caring unpaid – about 15% of the UK’s population. In 2020, the number of people in paid work who were also providing unpaid care increased to over 7 million. The stresses and strain of having to juggle paid work alongside unpaid care has led to hundreds of thousands of people having to leave the labour market entirely. On average, 600 people a day leave work to care – with over 500,000 people leaving work to provide unpaid care in the two years before the COVID-19 pandemic.

As our population ages, and changes to the way we work occur as a result of COVID-19, the issue of people juggling work and care is only going grow as a challenge. The UK already lags behind other countries when it comes to workplace rights for carers and it’s time our workplaces reflect the reality of our lives.

What would the Act do?

The Act will help support unpaid carers to remain in work alongside their unpaid caring responsibilities – and, given the current cost of living crisis, there has never been a more important time to do so.

Carers UK’s evidence from employers, through Employers for Carers, is that a right to Carer’s Leave supports retention and recruitment, as well as the health and wellbeing of employees with caring responsibilities.

Although our ultimate goal remains up to 10 days' paid leave from work for all carers in employment, Carers UK believes unpaid leave will deliver a number of different benefits.

The Act will:

• Give rights to at least 2 million employees who are carers.

• Prompt employers to whom this applied to think about their employees with caring responsibilities, and for many, create carer-related policies for the first time.

• Mean that more forward-looking employers will go further than the legislation required and introduce paid Carer’s Leave, to help them stay ahead with recruitment.

• Support carers' health and wellbeing. Research shows that having a supportive employer and the ability to take time off work to provide care (Carer’s Leave) can help to mitigate the pressures carers face.

• Recognise and value carers, which is critically important to them.

Economic and social impact of Carer's Leave

Our research shows that giving carers the right to take Carer’s Leave would:

• Improve finances for carers in the short and longer term as they are more able to juggle work and care.

• 37% of working carers said they needed unpaid Carer’s Leave, and a further 1 in 7 said if they didn’t get it, they would have to reduce working hours or give up work altogether.

• Particularly support women, who are more likely to be juggling work and care, and who are much more likely to be in part-time work rather than full-time.

• Bring increased productivity for employers, who would improve their employee retention rates and reduce their recruitment costs. One employer estimated that they saved around £1.8 million per annum through the application of carer policies in terms of preventing unplanned absences and presenteeism and a further £1.3 million per annum in retention savings.

• Save UK companies up to £4.8 billion a year in unplanned absences and a further £3.4 billion in improved employee retention by adopting flexible working policies to support those with caring responsibilities.

• Bring economic gains for the Treasury, through increased productivity, due to more carers being able to continue juggling work alongside their unpaid caring responsibilities, rather than having to leave the labour market. Our research in 2019 showed as many as 600 people a day were having to quit work because they were not getting the support they needed.

Click here

The Text Below is a Direct Copy From the UK Government Website

Unpaid carer’s leave

From 6 April 2024, employees will be entitled to unpaid leave to give or arrange care for a ‘dependant’ who has:

• a physical or mental illness or injury that means they’re expected to need care for more than 3 months

• a disability (as defined in the Equality Act 2010)

• care needs because of their old age

The dependant does not have to be a family member. It can be anyone who relies on them for care.

Employees are entitled to carer’s leave from their first day of work for their employer. Their employment rights (like holidays and returning to their job) are protected during carer’s leave.

How long employees can take

Employees can take up to one week of leave every 12 months. A ‘week’ means the length of time they usually work over 7 days. For example, if someone usually works 3 days a week, they can take 3 days of carer’s leave.

They can either take a whole week off or take individual days or half days throughout the year.

If an employee needs to care for more than one person, they cannot take a week of carer’s leave for each dependant. They can only take one week every 12 months. They can use the week of leave on more than one dependant.

If an employee is a parent, they can take up to 18 weeks’ leave to look after their child. This is separate to carer’s leave.

Employees with irregular working patterns

Work out how much carer’s leave the employee can take if their working hours change each week.

1. Add up the total number of hours worked in the previous 12 months.

2. Divide that total by 52 (or however many weeks since they started the job, if they’ve been in the job less than a year).

This is the amount of leave they can take as carer’s leave.

If an employee wants to take carer’s leave in their first week, use the amount they’re expected to work in a week as the amount of leave they can take.

How to take carer’s leave

Employees need to give their employer notice before they want their leave to start.

If the request is for half a day or a day, the notice period must be at least 3 days.

If the request is for more than one day, the notice period must be at least twice as long as the requested leave. For example, if the request is for 2 days, the notice period must be at least 4 days.

The notice period needs to be in full days, even if the request includes half day amounts.

The request does not have to be in writing.

Employees do not need to give evidence of their dependant’s care needs.

If you need to look after someone in an emergency, you can take time off for this without giving a notice period.

When employers can delay carer’s leave

Employers cannot refuse a carer’s leave request but can ask the employee to take it at a different time. They can only do this if the employee’s absence would cause serious disruption to the organisation.

If they delay it, the employer must:

• agree another date within one month of the requested date for the leave

• put the reason for the delay and new date in writing to the employee within 7 days of the original request, and before the requested start date of the leave

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Dear Readers and New Subscribers,

As you know, I’m passionate about raising awareness of caregivers' challenges, priming others before a crisis happens, and offering empathy and inspiration to those caring for a loved one today.

In the Resonance section of the website, I share articles, recommendations, and resources based on my personal caregiving experiences and those of others.

In The CAPE section (Care, be Aware, Prepare, and Engage), I offer insights from experts, researchers, and resources that can help us contextualise caregiving today.

Through these articles, I aim to dispel the myth that carergivers are superhuman. I try to reframe the narrative from ‘not me or us yet’ to ‘we all need to discuss care’: how we manage caregiving as a collective social need, as a family/local community support team AND how we would like to receive our individual, personal care.

In this article, I’m sharing a video of an interview with Professor Joan Tronto.

Joan C Tronto is professor emerita of political science at the University of Minnesota and the City University of New York. A graduate of Oberlin College, she received her PhD from Princeton University. She is the author of Moral Boundaries: A Political Argument for an Ethic of Care (1993), Caring Democracy: Markets, Equality and Justice (2013), and Who Cares? How to Reshape a Democratic Politics (2015), all of which have been widely translated. She has also authored more than fifty articles about care ethics and serves as a consulting editor for the International Journal of Care and Caring. A Fulbright Fellow in Bologna, Italy in 2007, in 2015, she was awarded an honorary doctorate by the University for Humanistic Studies in the Netherlands.

Summary:

In this 2014 interview, Professor Joan Tronto discusses the concept of care in relation to democracy, arguing that care is a fundamental aspect of human life and society. She emphasises that everyone is both a giver and receiver of care and that care is often undervalued and underpaid, typically falling to lower-status individuals in society. Tronto suggests that addressing this care deficit could involve elevating the status of care work or redistributing it more evenly across society, as the current system marginalises certain groups and threatens democratic principles.

Timestamped transcript of the interview.

0:03 Access Minnesota brings you the newsmakers and the stories that shape our everyday lives with analysis from the University of Minnesota Faculty Experts. Now here's Jim Dubois. The Affordable Care Act continues to generate controversy. Recent polls show that fewer than 40% of Americans approve of the Act, and some members of Congress are calling for fixes or an outright repeal, but the Affordable Care Act debate raises a much broader question: how should a society care for its people and who is responsible for providing that care?

0:41 University of Minnesota political science professor Joan Tronto her recent book titled 'Caring Democracy' looks beyond the politics of healthcare and suggests that overall Americans are facing a care deficit Joan Tronto is a professor and chair of the department of political science at the University of Minnesota she is also the author of the book 1 Professor Tronto.

1:11 Let's start with how you define care and how care relates to democracy.

Joan Tronto: so I define care very broadly this is a project I've been working on for over 20 years and twenty four years ago a colleague and I, Berenice Fischer2 define care as

• everything we do to continue, repair and maintain our world so that we may live in it as well as possible,

• who are the people in society that need care

• and who are the people who give care well

• everybody every person is both a giver and a receiver of care. Most of us don’t think of ourselves, with that word. When we think of care as caring activities, we think of ourselves in the heroic role of caregiver, e.g. I take care of my children or as a teacher of my students or doctors take care of patient

• But in fact over the course of our lives we are all constantly engaged in the process of giving and receiving care after all we had to get dressed and get to this place and get set up to do this interview and that's care work as well

2:29 Most of us as able-bodied adults do a lot of caring for ourselves so we don't even count it as care but it is the other thing that's fascinating is children as young as 10 months old try to imitate parents and give care back so this Norwegian psychologist named Stein Bråten3 has done this research where he has a caregiver sit at a table with a child feed the child then put the spoon down and of course as they're feeding the child they're going then up and the child of course then opens their mouth when they feed the child they put the spoon down and the child picks up the spoon takes food goes to the adult to try to get the adult to eat in the way that the child has just done.

3:19 there seems to be something almost hardwired in humans about the desire to care for others. Do we as a society have a moral imperative to give care to those who need it?

3:32 So we have to go more slowly than jumping from just there is care? to a moral imperative for society as a whole. In truth, every society has a theory about how care should be organised. I'm a political theorist; when we think of political thought, we often think about organisations or governments; we think about issues of protection in terms of preventing war, and we don't usually think about the fact that every society also has to organise care one way or another.

4:03 Now, historically the usual way to organise care has been to create households and to say let the households take the caring roles and do care within themselves and it's in Aristotle's Politics book one that there's a separation between the household and the political order and the household is the realm where care gets done.

4:26 But as you begin to move out, you realise that no, they're also public forms of care that are also always being given: educating a population is a form of caregiving providing for health, and providing regulations for healthcare, taking care of the young, the sick, the elderly have historically been done either by States or by individual communities or by churches. There are hundreds of ways to organise care but every society has to figure out how to do this.

4:59 How have politicians ignored the issue of care? Okay, so starting in the late nineteenth century, something important happened, and that is care gets professionalized, whereas once upon a time if you gave birth, you did it at home with community women helping you out. Now we have births in hospitals.

It used to be that if you died, your family was responsible for taking care of the arrangements of doing something with your body, and in many societies, that's still true. There might be people in the community there's a whole separate industry to take care of that.

Education has historically in most societies been done in the home, but now we have an educational system.

5:46 So, as you look at it, care began to move out of the household and into the market, into government agencies, and into the state itself in the nineteenth century. As you begin to expand those roles, you can either take them very seriously or you can not.

6:04 Politicians have conceived of these things piece by piece, right oh my gosh, people are beginning to create school systems, we better create a system for taxing to create schools, oh my gosh, we now have hospitals that coming into existence we better pass regulations to manage how the hospitals are built, where they're built, whether there’s training in one place, ornot enough in another.

6:31 So, politicians, as with everything, address issues one at a time as they come up, but the claim that I make in the book, and I think it's a vow, is that it's time for us to step back and as a society ask the question wait we created a whole system of ways of creating and taking care of people is this the way we should really organise it because there's one serious problem that comes in the way we typically organise things and it's not you know because politicians aren't thoughtful

7:03 They're facing this one question at a time. Care work has historically been undervalued as work, and it's been historically underpaid. It's, therefore, also historically been given over to people who aren't of very high status in society: women, slaves, servants, and working-class people. Now, people of colour people of ethnic and racial minorities are the people who end up doing vast amounts of caring work in the United States and for that matter globally

7:42 So the question is, does that mean they're not valuable? Does that mean the care work they're doing is not important? NO, in fact, if they stopped doing their work, the whole society would stop functioning, but if you look at what's valued in society and what gets higher pay and more prestige, it's not those caring jobs now that's a problem.

8:07 We could solve it by elevating those that work. We could solve it by redistributing that work differently so that it's not only put on the worst-paid people as the ones who end up doing it.

8:19 There are many solutions to the problem, but if we're concerned about equality in a democratic society, then having basically excluded a whole bunch of people and saying, ‘You, you take care of that stuff, and we'll talk about the important business here ourselves’ THIS is how we create a set of exclusions and marginalise people that is really threatening to a democratic way of life.

Carer Mentor Commentary:

We can each work to change the narrative in broad social policy by supporting campaigns like Carers UK for carers' rights nationally. We can also, within the context of our individual relationships, talk about care—receiving and giving it—one cup of coffee at a time.

Readdressing the value of care in our communities can shift the hidden care crisis from an individual burden behind closed doors to an open, social collective issue we can solve together.

Let’s start the conversation, share our experiences and wisdom, and call out the inequalities perpetuated today. After all, who do you want caring for you when you cannot care for yourself?

August 24th 2024

Caregivers being valued!!

April 23, 2024. PBS Newshour VP Kamala Harris meets nursing home workers to discuss health care during a campaign event in Wisconsin.

HIGHLY recommend watching. ESPECIALLY from 09.55mins

VP Kamala Harris: articulate, empathetic and understands caregiver’s value.

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1. Carers UK Press Release responding to the UK Chancellor’s at the Spring Budget (March 7th):

2. Caring Across Generations Statement on 2024 State of the Union

Press Release WASHINGTON (March 7, 2024) – Tonight, President Joe Biden delivered his third State of the Union Address, where he emphasized that investing in care is essential to the financial security of families and the success of the U.S. economy. The president reaffirmed his commitment to an economic agenda that invests in child care, paid leave, and aging and disability care. 

[LinkedIn post by Caring Across Generations with a video clip of the speech]

Below is a statement from Ai-jen Poo, executive director of Caring Across Generations:

“President Biden’s third State of the Union Address asked us to imagine a future with affordable child care, paid leave, aging and disability care, especially in the home. He affirmed the unprecedented focus and commitment of this administration to supporting caregiving – both those who need it and those who provide it. I am thankful we have a President who understands the extreme economic pressures facing families and workers, and is ready to take action so that we don’t have to make impossible choices between caring for ourselves or our loved ones and working. 

“When child care costs $10,000 annually but child care workers only make $14 per hour, something is wrong. When aging and disability care at home costs $64,000 annually but home care workers make only $15 per hour, something is wrong. We need public investments to bring the cost of care into balance. 

“By taxing the ultra-wealthy and lowering families’ out-of-pocket costs for care, we can create good care jobs in local communities, and enable family caregivers to maintain or secure jobs. These investments strengthen our overall workforce and our entire economy, which – at every level – relies upon the contributions of people with families. We simply can not wait any longer to invest in care. Care Can’t Wait. 

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Caring Across Generations is a national organization of family caregivers, care workers, disabled people, and aging adults working to transform the way we care in this country so that care is accessible, affordable and equitable— and our systems of care enable everyone to live and age with dignity. 

To achieve our vision, we transform cultural norms and narratives about aging, disability and care; win federal and state-level policies; and build power amongst the people touched by care. For more information, visit caringacross.org.

Jason Resendez. President & CEO President & CEO National Alliance for Caregiving. Source: LinkedIn Post March 8th.

During his State of the Union address, President Biden spoke deeply about a future where family caregivers are valued and seen. The National Alliance for Caregiving is encouraged that the Biden Administration continues to spotlight America's 53 million family caregivers and the policies like paid family leave needed to turn this vision into a reality. There's so much work ahead and we're dedicated to keeping up the drum beat!

Read our statement on the President's State of the Union here: https://lnkd.in/ef95Fbrw

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