Carer Mentor's November Roundup
Curating hope and curiously seeking inspiration after discombobulation.
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Hello, Dear Readers. A warm ‘Welcome!’ to new readers. If you’re new to Carer Mentor, I recommend starting with this article: Who Started Carer Mentor and Why?
November was a mini-rollercoaster of unpaid carers news that pushed me to wade through several reports. Surely the data speaks for what caregivers know?
At first, I felt disheartened that the ‘Keep Britain Working’ independent UK report (published on November 5th) seemed to skip over why people are leaving work to care for loved ones. Its ‘Terms of Reference’ (this is how the purpose and scope of a UK independent review inquiry is set up) predicated economic inactivity on ill health and disability1.
“Reversing the increase in economic inactivity linked to ill health and disability is a national priority.” - “Keep Britain Working” Terms of Reference
I felt the need to write an article that laid out the data, references and how numbers were calculated.
Thankfully, I also found this review, published on May 5, 2025. Adult Social Care Reform: The Cost of Inaction. Inquiry:2 This is the introduction to the Terms of Reference:
Successive governments have presented reform ideas for adult social care, yet few of these have been implemented. This inquiry seeks to understand what this inaction is costing. We will investigate the cost of inaction to individuals, the NHS, local authorities and also to the wider economy and HM Treasury, focussing not only on the financial cost, but also on the personal costs and on potential benefits that are being missed. The inquiry will consider social care for both older and working age adults.
This report is well worth reading and referencing:
Adult Social Care Reform: the cost of inaction. You can also watch the January-March 2025 meetings, where Oral Evidence is given here.
Three key points from Chapter 2 of the report ‘Unpaid carers: the hidden cost of inaction:
The amount of care being delivered by unpaid carers is increasing. The 2021 Census also found that 1.5 million carers in England and Wales now provide over 50 hours of care, an increase of 152,000 over the past decade.3 Carers UK told us:
“The amount of unpaid care provided is likely to be increasing due to the lack of affordable, reliable and good quality social care available, with families left to plug the gaps in formal provision. This has a significant impact on carers’ ability to participate in paid work and contribute to the wider economy, as well as being able to look after their own health and wellbeing.”4
The amount of care being provided by unpaid carers can also be illustrated by its economic value. Research by the Centre for Care and Carers UK valued contributions made by unpaid carers in the UK at £184.3 billion a year in 2021–22, an increase of £64.9 billion, or 54%, since 2011, and noted this was “equivalent to a second NHS”. 5
Research has attempted to quantify the cost of these challenges to businesses and the economy. In 2012 Age UK estimated that £5.3 billion had been wiped from the economy in lost earnings due to people dropping out of the workforce to take on caring responsibilities.6 Their analysis estimated that this had cost HM Treasury almost £1 billion in forgone taxes. 7 Employers for Carers, an employers’ membership forum supported by Carers UK, set out a range of figures in their business case for supporting working carers. They suggested that the impact of staff turnover, absence and stress due to juggling work and caring could be costing UK businesses over £8.2 billion per year and that businesses could save up to £4.8 billion a year in unplanned absences and £3.4 billion in improved employee retention by better supporting carers.8
Centrica, one of the founding members of Employers for Carers,9 has reported estimated yearly savings of £1.8 million through reduced unplanned absences and £1.3 million in retention savings due to its carer policies. These policies included flexible working practices, setting up a carers’ network (which, in 2004, they were one of the first employers to do) and a carers’ leave policy to give employees more paid-for leave without using annual leave allowances, so they can meet their caring responsibilities.10
This is the government’s response: Adult social care reform and the cost of inaction: government response to the Health and Social Care Committee (HSCC) report.
“We welcome the committee’s recommendations directed to the independent commission into adult social care. These recommendations will be a valuable resource for Baroness Casey as she leads this important work. Given the scale and complexity of the challenges facing adult social care, the government has deliberately given the commission a broad mandate.” - from the government response.
My head and heart felt somewhat appeased knowing that the HSCC report and recommendations have been published. But the reality is that this ‘Cost of inaction’ report is being fed into another committee that doesn’t fully readout until 2028. Heart sinking??11
The Good News
On November 25th— a day before the Chancellor’s Budget Announcements— the government responded to the Carers Allowance Overpayments review (read more about the overpayments scandal here). Carers UK, with The Guardian’s Patrick Butler and Josh Halliday, exposed the facts and systemic failures faced by working carers. Carers were being pursued for overpayments of Carers Allowance made by the Department for Work and Pensions due to their clerical errors and delayed notifications to carers. Carers UK Press Release
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
November 26. UK Autumn Budget: a little mayhem, a moot point
The long-awaited Autumn Budget was somewhat obscured by the Office of Budget Responsibility leaking the Chancellor’s Budget analysis 40 minutes before it was presented. Ministers in Parliament didn’t have a copy in their hands, but everyone outside did. A little mayhem and drama.
Rachel Reeves, the Chancellor, is freezing tax thresholds in an attempt to plug the hole in the public accounts. “Freezing tax thresholds results in “fiscal drag” – a phenomenon where people are dragged into higher tax bands when they get pay rises.”. If you’re looking for a good summary of this Autumn budget, Martin Lewis is a reliable reference.
No messages about Social Care reforms, but I suppose that’s because the independent commission inquiry by Baroness Casey is ongoing. Meanwhile, the cost of inaction around Adult Social Care reform will keep growing.
The rollercoaster of news led me to reflect on ‘hope’ and how I could relearn or recapture it.
The ‘Letters from a Caregiver’ Collaboration series continues with a third article. This Winter season’s letters so far: ‘Relearning Hope In A Time Of Darkness’
Perhaps actively seeking hope out can help us recognise more inspiring moments and reasons to be hope-full.
In the US, November was Family Caregivers’ Month. CareFest was 18-20 November
Caring Across Generations is proud to host CareFest 2025 in New York City this November. We are bringing together a dynamic community of care champions and innovators, culture makers, journalists, and leaders to share stories, ideas, and dreams for the future of care in America. Unhindered by today’s news or conventional wisdom, we will explore the care solutions our families and communities yearn for. We will grapple with the trends shaping our reality– from artificial intelligence to the attention economy – and place care at the heart of a more hopeful future.
November 18 Panel featuring Jose Antonio Vargas, Kathleen Chalfant, Patrece Lucas, and Kristin Rowe Finkbeiner. “We encounter care at every stage of life, and we can’t predict when we will need or be called to care. How can intergenerational caregiving help change our culture to both better support young people and embrace aging?”
November 20 Creating With Care “with Cristela Alonzo (Upper Classy), DJ Nash (A Million Little Things), and Liz Sargent (Take Me Home), moderated by Dade Hayes (Deadline Hollywood). Creatives behind breakthrough projects will unpack how stories exploring aging, disability and care themes have resonated with audiences and opened new creative pathways.”
An inspiring project. Heart swelling moments.
November 25. UK charity records original music by people living with dementia The Article about the Mumuration Recording Project By Amelia Hill. It was led by two highly experienced vocal animateurs, Emily Barden and Sam Glazer.
The charity ‘Raise Your Voice’ started this music project for vulnerable people living with dementia and their carers, based in two areas around Lewes, East Sussex and Burgess Hill in West Sussex. It is run by professional musicians, singer Jane Haughton and pianists Nancy Cooley and Jenny Bewick
The Murmuration Recording Project aims to unlock memories and sensations for participants while creating a nine-track CD, recorded at Glyndebourne.
‘It is the first time any of them have written songs – and the process has unlocked sensations and memories everyday life could no longer reach, the music capturing the remaining threads connecting them to the world around them.
Weekly workshops, supported by musicians, artists and trained facilitators, prompt participants to articulate and share their inner worlds as the inspiration for composition.’
Inspiring events and words that can change our perspective
(who writes Thousands of Us) wrote this engaging piece ‘The Aisle Between Us. This is my first time......’ Here’s a comment from (who writes Care is a Strategy), shared this beautiful article about her wedding day. The Dream Wedding On love, caregiving, and learning to choose joy without guilt. I loved reading this article, I think you will too.“Haley, what a great post — filled with charming details (love the Cute Guy insertion) wrapped around a serious topic that you handled beautifully, both in the store and in your writing. You have a light touch, meting out just the right amount of information and detail at the time. Can’t wait for more. I’m a fan already!”
“Still, after years of caregiving, centering myself — us — felt radical. In my late 20s and early 30s, I lost myself in the logistics of caring for my mom: moving home, balancing work, trying to be everything for everyone. There was a stretch where I didn’t go on a date for two years because I couldn’t imagine making space for anyone else. Over time, through deep reflection and a lot of growth, I began to rebuild my sense of self and I eventually found love with a wonderful partner.
And yet, for the past decade, one thought lingered in the background: What would my wedding day look like now that my mom has Alzheimer’s?” - Viva Mogi
Madeleine (who writes
) offers us a compassionate reframe via some romcom dialogue, and it resonated for me. Daring to imagine you could live a different life. The radical act of imagination during heartbreak. These words have gone into my journal, thanks, Madeleine:(who writes Music Therapy / Music Musings) shares moments when he offers music to those in need. I recommend reading his articles to discover precious moments of humanity that can counter the harsh headlines. This is another one I just found today: In These Turbulent Times… Embrace The Melancholy Exploring the melancholy in music and art can be therapeutic. There’s comfort in the melancholy. Raymond says, “Today... here is my creative offering“for me and for you. I just think to myself… What A Wonderful World.”“I don’t identify with the survivor archetype, the one who transcends pain with tougher skin and relentless perseverance. I feel more like clay: reshaped, remade, softened. It wasn’t a choice, and I was never ready for it, but it happened.”
Continuous Learning about other people’s experiences
The researcher in me is insatiably curious, the carer in me wants to connect with empathy with others navigating human-ing-hard experiences. So this was how I found two writers who share their experiences of Cochlear Implants.
Two articles by
(who writes ‘Hearing Pain or Deaf Gain’) opened my heart and mind to her experience: ‘On the decision to accept an implant’ and ‘On Assumptions.’ These articles, in turn led me to (who writes ‘A Healing Odyssey’) His article ‘The Barber. Navigating real life.’ translates his experience with the implant for those of us who take hearing for granted.When I am not wearing my bionic ears I can hear bits of things: the buzzing of the clippers, low frequency rumblings, muted voices speaking in a language foreign to all of those who can hear and a language that has no translation. It used to bother me, not being able to hear well. Now, as when I am wearing my bionic ears and can hear everything, I simply absorb the sound of nothing. I appreciate the nothingness. - Rob Jenkins
In case you just need some comfort recommendations: The ComfortZone
Save this link for when you need some watch/listen-to recommendations:
#1 This Caregiver's Watchlist. 'Feel the feels', escape reality or be transported by music.
This lists some gems for you to watch or listen to.
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The Keep Britain Working review will have 2 distinct phases:
The first will be a discovery phase, with the aim of understanding the characteristics and drivers of rising levels of inactivity and ill health, the intersection with skill and qualification level, what employers currently do to help employ, train and retain disabled people and those with health conditions and how employers experience this in practice. This phase will aim to identify what is driving economic inactivity and where there is the greatest potential for employers and government to make a difference. The findings of this phase will be published, including the key questions and areas that are expected to be the focus for the second phase of the review.
The discovery phase will be followed by exploring and developing recommendations for practical actions, both for employers and for government, to address this complex problem including what they could do more of, the support needed, including through the new National Jobs and Careers Service, as well as consideration of the business impacts. In this second phase, the review is expected to consider recruitment, retention, prevention, early intervention, return to work, and skills – all issues that are included in Get Britain Working, the government’s White Paper published on 26 November 2024.
UK Parliament Health and Social Care Committee. Commons Select Committee.
Welcome to the cross-party Health and Social Care Committee. It is our responsibility to scrutinise the work of the Department of Health and Social Care and its associated public bodies. We examine government policy, spending and administration on behalf of the electorate and the House of Commons.
Oral evidence transcripts and written evidence was provided February to April 2025
Centre for Care, New Report: Valuing Carers: 2021/22, the value of unpaid carers in the UK, 20 November 2024. The combined NHS budget across the four nations of the UK was £189 billion in 2021/22.
Age UK, More than £5.3 billion wiped from the economy, 28 June 2012
Employers for Carers, The business case (Accessed 20/01/25)
Employers for Carers: Managed and supported by the specialist knowledge of Carers UK, Employers for Carers (EfC) has evolved from a pioneering group of employers committed to working carers. Our key purpose is to ensure that employers have the support to retain and manage employees with caring responsibilities.
Launched in 2009 as an employers’ membership forum, EfC now has over 230 member organisations across the public, private and voluntary sectors. The total number of employees covered by member organisations is now above the 2.9 million mark.
Employers for Carers, The business case for supporting working carers, October 2023; Employers for Carers, The business case (Accessed 20/01/25)
The increased need for care has outpaced infrastructure investments and policy reforms. 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)
YES, Victoria — as a reader, I can accept your roundups as "Santa's Care-focused Grotto" (love it!), but as a writer, it feels like the effort of an academic thesis! How ever do you do it?! Thanks so much for the shout-out and support for Haley and my humble comment... your consistency in lifting others is remarkable. I appreciate everything you do for family caregivers. 💛
Hello, Victoria. Thank you so much for the mention, quote, and support. Your newsletter is chock full of helpful information!