Carers Rights Day UK, November 21st.
Advocacy and empathy for each other in our communities. iCARE Stack support.
Hello, dear Readers. I’m Victoria (She/her/hers). I cared for my Dad through to his passing (the hellish dark days with grains of joy), and now I look after Mum (calmer waters, with moments of joy and several giggles). You can read more about why I’m publishing Carer Mentor here: Who Started Carer Mentor and Why?’
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.
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.
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!
Please ‘❤️’ LIKE the article & consider subscribing!
Carer’s Rights Day is an initiative led by Carers UK
Carers UK has a history stretching back to the 1960s when a carer called Rev. Mary Webster founded the first ever carers' organisation. This organisation merged with another carers' organisation to form Carers UK. Over the years countless thousands of our members have fought alongside us for a better deal for carers and have helped to lead and shape the charity.
Since Carers UK was first established over 50 years ago, securing rights and equality for carers has been at the heart of what we do. Concrete rights and entitlements matter to carers in terms of making sure that carers are valued and recognised for what they do, but also ensuring that they get the vital support they need as well as having choices about caring. Rights and equality cover all aspects of carers lives, from their finances, receiving support, their ability to juggle work and care, to having freedom from discrimination.
Carers UK is campaigning for a future where all carers are properly recognised, valued and provided with the support they need to live a life beyond their caring responsibilities. We are working to achieve the following goals:
Making caring the 10th protected characteristic
Greater recognition and support to identify as a carer
Clear rights not to be discriminated against because of their caring responsibilities
A fairer social security system which supports carers to live a life free from poverty
Consistent recognition, involvement, and support from the NHS
Access to good quality and affordable social care, including the ability to take a break from caring
Better workplace support including a right to paid time off to care for a family member or friend.
Carers UK, in partnership with Carers Trust, has received funding from the Covid 19 Support Fund to support the “Making Carers Count” project. This part of the three-year project seeks to understand the experiences of four traditionally underrepresented groups of carers both during and beyond the COVID-19 pandemic. These are LGBTQ+ carers, ethnic minority carers, older carers without access to the internet and carers of faith. This project is pulling together existing knowledge and engaging in new research to more fully understand the experiences of these carers, the unique challenges they may experience in their caring role, as well as collating examples of best practice. This knowledge gained will be applied to Carers UK services and shared with other service delivery organisations and commissioners to improve access to and outcomes from support, information and advice for marginalised carers.
Stonewall ‘Our campaigns drive positive change in public attitudes and public policy. We ensure LGBTQ+ people can thrive throughout our lives by building deep, sustained change programmes with the institutions that have the biggest impact on us, whether we’re learning, working, praying or playing sport. We make sure that the world hears and learns from LGBTQ+ communities, and our work is grounded in evidence and expertise. And we’re committed to empowering people to create change in their own communities.’
So many brilliant things in this essay, all of which need some boosting for visibility. Carers deserve more visibility, more community support, and more of a voice. I'm also genuinely excited about the iCare Stack, a much needed resource for all of us!