Carer Mentor: The July Roundup
Raising Awareness About Caregiver Needs and Leading with Empathy
Hello, Dear Readers! A warm ‘Welcome!’ to our new Carer Mentor community members! It’s great to have you with us.
Read about why I created Carer Mentor here: Who Started Carer Mentor and Why?
July has been a busy month and a time for recalibration after my health scare was resolved (phew!). I’ve published a few articles on the website this month, but I held back on emailing everyone because I wanted to explore how I’m delivering content to you.
I’m experimenting a little and learning new skills. (Pretty tough with fragmented time and big ideas!) I’m adventuring into the world of video walkthroughs and audio, as you’ll see below.
I hope this will make the website easier for you to navigate and demonstrate how easy it is to find other like-minded people to connect to via our community network.
In this July roundup, I’m highlighting carer needs and the need for leadership with empathy. There’s a particular focus on unpaid carers in the UK. This is because there’s a new call for the State of Caring Survey responders, and I was impressed by the article Emily Kenway wrote in The Guardian.
Adam Grant’s interview with Jacinda Ardern, was a great find. Her words inspire me.
Table of Contents
1. Bringing the website to life via Video Walkthroughs
This video provides an overview of the Carer Mentor website.
The website right now has 227 interlinked Carer Mentor articles and anthologies. It’s a hub that shares insights with a lot of empathy. It’s also a portal to other caregivers within our community.
Click any anthology or index, and you’ll find a directory of authors/creators who are contributing to Carer Mentor and you can connect to. That’s the beauty and deeper value of our community. Carer Mentor is a support network, a portal to like-minded souls, and an empathetic online space. Bookmark and access the site on your schedule, when you need it!
Every situation is unique, and the circumstances for each caregiver are different. This online space isn’t about creating a comprehensive tool telling you what to do. Carer Mentor offers empathy and inspiration whether you’re taking care of an elderly family member, a child with special needs, or a partner facing health challenges. It’s a website for the caregiver first, and caregiving second.
Take a look around the website and see what resonates with you in your situation. You are NOT alone. ❤️ www.carermentor.com
If you use the Substack notes app, you can check out my note with a short clip of the video here. I’d appreciate it if you could share this article and ‘restack’ the note so we can reach others who need these free resources and community support. Caregiving can be an isolating, lonely experience.
2. The Carer Mentor Articles and Website Updates
The first two articles bring home how easily we can gaslight ourselves, second-guessing our symptoms.
I worry about how many carers may be dismissing symptoms or the need for further investigations because they think it’s ‘just the menopause?’ While perimenopause and menopause discussions are becoming more mainstream, unpaid carers (the majority of whom are middle-aged women1), often deprioritise their health needs in favour of those of their loved one.2
If you’ve any nebulous or nagging symptoms, please seek medical advice and ask for tests for clear answers. Your health needs and peace of mind matter, because YOU matter! (I refuse to say ‘so you can look after your loved one.’ Ugghh. Please know your health matters because you matter and are worthy of good health!)
'Do I have cancer?' Navigating to Clarity. A summary of my journey and recommendations. From uncertainty, to action, but then a high positive test strung my nerves until July 7.
An Early-Onset Alzheimer's Memoir, By Someone Who Cared For Her Parents. "Remember When: My Life with Alzheimer's," By Fiona Phillips and Martin Frizell. I discovered Fiona Phillip’s new book release. She initially wrote off the tiny first warning signs-the inability to concentrate and the ‘brain fog’ to the menopause. She was diagnosed with early-onset Alzheimer's in 2022 at the young age of 61. She faced the same heartbreaking diagnosis she had witnessed in her parents.
Dementia Book Recommendations: Sharing books that resonate, inform, and offer practical and emotional support. This article is part of the Carer Mentor iCARE Dementia Anthology, which contains Articles By Dementia Caregivers and Those Diagnosed with Dementia.
July 14 Caregiving Hacks & Tips: A Rolling List of Ideas. Recommendations from me and other caregivers. The Hospital Go Bag and Caregiver’s Go Bag are the most popular ideas. I created checklists in a PDF downloadable format for you. They’re available with an 80% discounted annual paid subscription until September 30th.
3 What I’m watching and reading
‘Empathy is a kind of strength’: Jacinda Ardern on kind leadership, public rage and life in Trump’s America. (31 May, 2025) by Katharine Viner, The Guardian Article
Goodreads: A Different Kind of Power by Jacinda Ardern was released June 3, 2025
Jacinda Ardern on empathetic leadership | ReThinking with Adam Grant. (July 4, 2025)
From the former prime minister of New Zealand, then the world’s youngest female head of government and just the second to give birth in office, comes a deeply personal memoir chronicling her extraordinary rise and offering inspiration to a new generation of leaders.
When Jacinda Ardern was thrown into the race for New Zealand’s prime ministry just months before the general election in 2017, she had no intention of even running for the position—but she knew it was her responsibility to become the leader her country needed. In this episode, Adam and Jacinda reflect on strategies for closing confidence gaps, discuss the importance of compassion in leadership, and break down a phenomenon that New Zealanders call “tall poppy syndrome.” They also look back on Jacinda’s most pivotal decisions, from steering the country through the COVID pandemic to stepping down as Prime Minister.
The YouTube timestamps:
00:00 Intro
01:08 Criers, huggers and worriers
03:06 Impostor syndrome
04:19 Jacinda's path to leadership
09:26 The pitfalls of responsibility and empathy
12:14: “In psychology, we would say, let's not talk about compassion fatigue because it's not compassion that drains you. It's empathic distress. It's the the feeling of hurting for someone else but not being able to help.” Adam Grant
13:21 Leading with kindness
17:29 Parenting and leadership
19:21 Leading through COVID
27:28 That speaks to a distinction you make in the book between regret and remorse. Tell me about that.
Regret has so much clarity. I regret X, Y, or Z. Remorse is I have sadness for some of the outcomes, but please tell me what what we should have done differently. I guess that's how I would express it. But am I unhappy we save lives? No.
And I'm guessing if you know back in 2019, if somebody had asked you, ..you have a choice. You can either unite people and lose more lives or you can save lives and the country will be more divided. Yeah. You would have made the choice you made.
Yeah. And in fact, there are micro moments where I knew that was the choice I was making or at least I felt at that time that was the choice I was making. Some of the decisions that at that time I thought there's so much fatigue. People are so tired. Um but it, you know, we still held the belief that we we needed to keep going while we were vaccinating people. I knew that those were unpopular choices. Um but, you know, I guess that's leadership.
28:33 Tall poppy syndrome
29:48 Stepping down
32:33 Lightning round
34:40 Driving positive change through optimism
35:27 What is it that gives you that sense of confidence and hope just exposure exposure to people you know proximity to young people. You
know, inherently we know that uh young people tend to be more cynical uh in their youth, but in amongst that cynicism, I still see an optimism. ‘Well, you know, I'm going to do X, Y, and Z in spite of the leadership I see around me. And so, that's a cause. That's a cause for hope
36.29 (Ernest Shackleton) survival was dependent on their mindset and he was the one that said optimism is true moral courage. So you know in my mind that actually undercuts this sentiment at least that you have sometime that hope or optimism is naive. It is a choice. Um and not only is a choice uh it implies actually something that is required in difficult circumstances and trying circumstances in order to succeed.
37:20 And you said you don't want a thicker skin. Why don't you want one?
Because really early on I learned that thicker skin might mean losing my empathy. I'd rather have empathy because I think it's, you know, that that's
something as policy makers and decision makers makes us better at our job. And so if the price I pay is that sometimes the job hurts a little, so be it. Sometimes the people who feel things the most deeply are the ones who care the most deeply. And don't we want those people in leadership? I know. I certainly do.
There is something reminiscent of Viktor Frankl’s work, in Jacinda Ardern’s words about optimism, and not wanting to be thicker skinned. An inspiring yet realistic perspective.
Please press your ‘❤️’ to like this and guide others here.
4. By Emily Kenway Carers like me connect patients and doctors – so why are we so often made to feel invisible? (June 30, 2025)
I always appreciate the incisive, articulate insights of Emily Kenway. 3
One of my close friends sent a link to this article. I highly recommend reading it. A few quotes that I’ve saved to reference her work later. These insights are spot on. I’ve highlighted the points that hit hard with their resonance.
Family members provide far more than hands-on care at home in the absence of paid workers – their unpaid labour is woven through the entire health and care system and at all times. At the most basic level, they perform a high volume of administrative tasks, made harder by disjointed and complex systems. In fact, the carers in the study spent up to 220 hours over 12 weeks on these sorts of tasks for the people they are caring for. The diaries read like broken records – endless arranging and rearranging of appointments, prescriptions and finances, automated phone services that lead to dead ends, digitised forms that aren’t fit for purpose. “I wish that we did not move in circles,” wrote Philippa, 86, and caring for her 60-year-old son, after a long week trying to sort out his future care.
In a cast of changing medical and care professionals, family members also act as essential living repositories of their loved ones’ medical histories. Jared’s wife had an industrial accident in 2011, after which she was in a coma.
Beyond project management and medical histories, carers also reported enabling what professionals call “person-centred care”, ensuring that the personality and preferences of their family members are understood.
Throughout the interviews and diaries, carers such as Lisa explain repeatedly how they lubricate the system, enabling it to function when care-receiving loved ones cannot. They are the unseen but essential lifeblood of the health and care system: it’s not about them, but it does not function without them.
“Essential living repositories” and “lubricate the system’ are two phrases that have stuck in my head. Carers are the glue for disjointed and complex systems; without us, the system would fall apart. We also compensate for mismatched communications and disconnects.
Keep this in mind when you read the following article, or anything about the NHS, social care and government plans.
Carers play a vital role in today’s healthcare system. We need to have a seat at the table and be heard, not just in the care of our loved one, but also in system reforms for the NHS and social care.
5. Fit for the future: 10 Year Health Plan for England - executive summary (accessible version updated 15 July 2025)
When you read the policy paper, you’ll see 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.
Quote from the paper:
We will reinvent the NHS through 3 radical shifts:
hospital to community
analogue to digital
sickness to prevention
These will be the core components of our new care model. To support the scale of change we need, we will ensure the whole NHS is ready to deliver these 3 shifts at pace:
through a new operating model
by ushering in a new era of transparency
by creating a new workforce model with staff genuinely aligned with the future direction of reform
through a reshaped innovation strategy
by taking a different approach to NHS finances
From hospital to community: the Neighbourhood Health Service, designed around you
If the NHS does not feel like a single, co-ordinated, patient-orientated service, that is for a simple reason: it is not one. It is hospital-centric, detached from communities and organises its care into multiple, fragmented silos. We need to shift to a model able to provide continuous, accessible and integrated care.
The Neighbourhood Health Service is our alternative. It will bring care into local communities, convene professionals into patient-centred teams and end fragmentation. In doing so, it will revitalise access to general practice and enable hospitals to focus on providing world-class specialist care to those who need it. Over time, it will combine with our new genomics population health service to provide predictive and preventative care that anticipates need, rather than just reacting to it.
At its core, the Neighbourhood Health Service will embody our new preventative principle that care should happen:
as locally as it can
digitally by default
in a patient’s home if possible
in a neighbourhood health centre (NHC) when needed
in a hospital if necessary
This last section underscores why today, unpaid carers have to assume the burden of ‘lubricating the system.’ And yet, these plans have ignored the needs of unpaid carers, and their current role. They assume unpaid carers will continue as they are. In the absence of social care investments (people and money) who will be providing the ‘Neighbourhood Health Service’? This is the question I’ll be seeking answers to.
With an ageing population and lack of social care reform (delayed to 2028)4, it’s easy to see that the number of unpaid carers will continue to increase over the next few years. In the absence of flexible working environments, carers are struggling at work and feel forced to leave.5
“The State of Caring 2024 survey found that unpaid carers are finding it increasingly difficult to afford day-to-day living costs, with the worry and anxiety of this further affecting their mental health and wellbeing.” (Carers UK, 23 October 2024)
A contraction of the working population and an increasing population ‘out of work’ doesn’t bode well for the future of the UK economy. On the other hand, imagine the opportunities and possibilities if unpaid carers needs were met!
Economists and politicians continue to wonder why people are not returning to work after the pandemic—it’s pretty evident to caregivers!
6. Survey on caring, and a petition.
The State of Caring Survey is an important research tool Carers UK and other unpaid carer support organisations use for evidence based, need statements.
6a Carers UK, State of Caring Survey 2025.
If you’re a UK-based caregiver, please participate in the 2025 State of Caring survey. The State of Caring 2025 survey will close on August 10, and Carers UK will share the results later in the year.
You can read more about the survey and view previous years’ results here.
In my opinion, Carers UK need this research and more voices to continue to
respond to the continuing injustice of Carer’s Allowance overpayments
campaign for financial support for carers
respond to proposed NHS changes that focus on shifting ‘care into the community’ while the social care reforms and actions have been delayed to 2028.
6b. By Carers Trust Protest from Home: Call on Westminster to give carers the legal right to a break.
Click the button to sign the petition.
Carers need more than gratitude or praise. They need a break.
But for many, even just a few hours to themselves is impossible. To most carers, a holiday is just a pipedream. That’s either because replacement care is hard to come by as social care is so stretched, or because it isn’t affordable, or because there aren’t locally funded options for breaks.
Caring shouldn’t come at a cost to your health, your income, or your identity.
Please press your ‘❤️’ to like this and guide others here.
43% of current or former carers have had a mental or physical health condition develop or become worse since taking on caring responsibilities
Over half (58%) say they face disadvantages in looking after their own health
40% of those who are currently caring have cancelled a medical appointment, test, scan, treatment or therapy because of their caring roles
Emily Kenway's 'Who Cares: The hidden crisis of caregiving and how we solve it' One of my Top Ten Annual Re-Reads.
The Casey Commission (website)
The Prime Minister has asked Baroness Louise Casey to chair an Independent Commission into Adult Social Care. The Independent Commission will report directly into the Prime Minister. The Commission will be undertaken in two phases with the final phase reporting back by 2028 into the Prime Minister.
The Commission will work with people drawing on care and support, families, staff, politicians, the private sector and third sector and the public to make clear recommendations for how to reform the adult social care system to meet the current and future needs of the population. (Taken from the Casey Commission website)
Adult Social Care Reform: the cost of inaction This is a House of Commons committee report, with recommendations to government. The Government has two months to respond. (Monday May 5, 2025)
Unpaid carers: the hidden cost of inaction
6. Unpaid carers are bearing the highest cost from successive governments’ failures to reform adult social care. They provide care worth £184 billion, “equivalent to a second NHS”, but this is often unrecognised and comes at great personal, emotional and financial cost as well as a cost to their own health. Carers can’t do the vital work they do to support the formal system if nobody is caring for them, and the moral and financial case for doing so is clear. We were not able to find official estimates of the cost to the Exchequer of the failure to properly support unpaid carers’ employment opportunities. However, given that one study placed it at £1 billion in 2012 the potential return on investment for supporting unpaid carers could be substantial. (Conclusion, Paragraph 47)
As always - Great Work! Just a note of appreciation for all that U do to support Caregivers -past, present an future. Your time and dedication to being a Carer Mentor is a Blessing. The video works well. Thank you Victoria.
This wrap-up is so impressive and far reaching, Victoria, with depth and variety of approaches for caregivers. You are amazing! I was especially taken with the interview in leadership with Arden. She is a living heroine, fully engaged in feminine power. As are you. ❤️