In a recent interview, Matthew McKenzie sat down with Hannah Codigan, a palliative care nurse who brings a unique perspective to healthcare, not only as a professional but also as someone with lived experience of serious mental illness. Together, they explored the importance of recognising unpaid carers and embedding lived experience voices in the design and delivery of healthcare services.
Caring Beyond the Patient
Hannah shared how her role in hospice care extends beyond patients to include families and carers who often struggle without recognition. She emphasised that carers need as much emotional and practical support as the people they care for, noting how time pressures in nursing can make it difficult to truly listen to their experiences.
Caring for a loved one is a role that often goes unseen and undervalued. In this interview, Matthew McKenzie speaks with Elsie, a 73-year-old carer and activist, about her journey as an unpaid carer, the challenges she’s faced, and her mission to support others walking the same path.
Standing Strong for Carers’ Rights
Elsie refuses to be silenced. Though at times labeled as a “persistent, unreasonable complainer,” she sees her persistence as a duty to her loved ones and to other carers. For her, raising concerns is about advocating for better care and systemic improvements.
Her advice to carers is simple but powerful:
Trust your instincts.
Don’t give up until your loved one gets the right care.
Learn about carers’ rights and stay engaged in decisions.
Finding Strength in Words
In a deeply moving moment, Elsie shared a poem she had written for the Book of Remembrance at Honor Oak Crematorium, in memory of her son. Her words reflect not only grief but also strength, love, and the motivation to keep advocating for change.
You’ll always be our hero. Although you’re gone, we’re not apart. Our love for you keeps going, It stays deep within our hearts.
Football, food and fishing Were what it was all about. Blue is the color, Come on, you lions, to shout.
Welcome back to another Carer Champion interview. Carers play an essential role in our society, often operating behind the scenes and without pay. In this interview, we meet Maz, a volunteer with Carers UK, who sheds light on the nature of unpaid care work, the challenges carers face, and the significant support networks available for them. Let’s dive into her invaluable insights.
To watch the video, please click play on the video below.
The Hidden Army of Carers
Maz describes unpaid carers as a “hidden army” that tirelessly provides care for loved ones, often without much recognition or support. Unlike professional care workers who are trained and compensated for their services, unpaid carers usually step into the role out of necessity and affection for those they care for. Maz herself is an example of a “sandwich carer,” a term used for someone who cares for both their elderly parents and their adult children.
Supporting unpaid carers is a greatly unrecognized yet profoundly impactful endeavor. In our latest interview from a series dedicated to highlighting those who go out of their way to aid and uplift unpaid carers, Matthew McKenzie had the opportunity to speak with Ionie Hughes.
Ionie talked about how she tries to reach parent carers through her charity, Socialising Angels, which is a C.I.C that was created to help reduce isolation, which focuses to help young adults with social, emotional and mental health needs.
You can watch the full interview below.
Drawing from her personal experiences and relentless advocacy, Ionie provides invaluable insight into the unique challenges and necessities of unpaid carers. Below, we delve into Ionie’s story, her organization, and the far-reaching influence of her work.
Training and Positive Influence
Ionie is trained in Rational Emotional Behavior Therapy, reinforcing her belief that altering one’s mindset and belief systems is crucial for overcoming challenges. She emphasizes positive thinking and speech, offering powerful encouragement and practical advice to other carers. Her ability to balance personal experience with professional training enhances her effectiveness as a support figure.
Socializing Angels: A Community Endeavor
About the Organization
Socializing Angels CIC, founded by Ionie in 2022 and operational since 2023, is based in Brixton. The organization aims to bring young adults with various disabilities into the community, providing them with social engagement opportunities. This initiative not only enriches the lives of the young adults but also offers respite to their parent carers.
Challenges of Running a Non-Profit
Running a community interest company like Socializing Angels comes with its own set of challenges. As the CEO, Ionie juggles multiple responsibilities without financial compensation, as most of the organization’s funds are directed toward service provision. The startup phase of the CIC is heavily reliant on external funding and the dedication of its founder.
Ionie’s work extends beyond service provision for her own son to advocating for and supporting other young adults and their families. This dual role often leads to overwhelming exhaustion and the risk of burnout. However, her steadfast commitment to both her son and her organization underscores the dedication and resilience inherent to unpaid carers.
The Unseen Challenges of Unpaid Carers
Daily Struggles and Lack of Recognition
Unpaid carers perform a plethora of tasks around the clock, often without recognition or financial remuneration. Their roles are multifaceted, ranging from advocacy to personal assistance and emotional support.
Ionie points out that unpaid carers frequently experience burnout due to the nonstop nature of their responsibilities. The mental toll of continually advocating and caring for a loved one, compounded by the financial strain of a cost-of-living crisis, is immense.
Integrity and Unwavering Commitment
Despite these challenges, the integrity and love that motivate unpaid carers are evident. They dedicate themselves selflessly to the welfare of others, driven by an unwavering commitment to their loved ones. This spirit of selflessness is emblematic of the unpaid carer community.
Essential Skills for Carer Outreach
Knowledge of Community Resources
For carers seeking to make a difference, understanding the community landscape is crucial. This involves attending meetings, forums, and various community events to stay informed and engaged. Personal interactions and shared experiences are key elements in creating a supportive network.
Empathy, Compassion, and Understanding
Ionie highlights the importance of empathy, compassion, and active listening in supporting fellow carers. Building a rapport and a community based on mutual understanding and shared experiences can provide both practical support and emotional solace.
Personal Experience and Advocacy
Personal experience is a powerful tool in advocacy. Ionie’s own journey has been instrumental in shaping her ability to help others. By sharing her story and the strategies that have worked for her, she provides a valuable blueprint for other carers seeking guidance and support.
Conclusion
Ionie Hughes’ journey and dedication shine a spotlight on the often-overlooked world of unpaid carers. Her relentless advocacy, personal sacrifices, and the establishment of Socializing Angels CIC stand as a testament to the incredible impact one person can have in making the world a more inclusive and supportive place.
Through recognizing and addressing the challenges faced by unpaid carers, we can begin to create a more understanding and supportive environment. It is imperative to appreciate and uplift those who selflessly dedicate their lives to the care of others, often without any form of compensation or recognition. Ionie’s story is a powerful reminder of the strength and resilience that define the carer community.
As a person of lived experience in caring for those close to me. I have always tried to advocate that a caring attitude leads to caring communities. We all want a place where we can thrive. We all want somewhere that we are connected and supported. This takes work, it takes energy and yes, it takes a lot of experience.
Its not just about caring for someone, we want a place that cares for us, but we must all chip in. We must all do our bit, but the goal is that we will all benefit.
Caring for one another is something that is a wonderful thing, it is not easy and I know many walk away from the role because the challenge is too much. This is understanding, we should have that choice.
However, the choice gets more expensive if we all decide to walk away from connecting with each other. Such a choice leads to isolation, misunderstandings, fragmentation and certainly poor mental health. We should try to care for our community. It is something that will benefit us in the long run. Its a wonderful thing to learn from each other, but we must chose wisely. We must look at the long term picture and not focus on short easy gains that never last.
Building a caring community is the way forward. For far too long we have become isolated and no one benefits. We need to connect and look for what brings us together. There is no quick solutions, it takes hard work, but together we will all rise.
Community is important, especially a community that cares.
Welcome back to the 5th in the series of carer activist interviews. I have a special treat for Carers Week 2024 as this time I have gone international and interviewed Bernard Coley who is a strong champion for caregiver activism internationally.
Bernard is a carer and also does a lot of work making the carer visible especially regarding the impact of Parkinsons.
He acknowledges there are many challenges facing those who try to connect with caregivers and these challenges are actually similar over in the UK.
You can watch the interview for free below as Benard talks about how important it is for carers NOT to stay silent about their role. There is also discussion on how members of the black community can make a difference when connecting with carers.
Welcome back to my carer activist interview series. We have a short blog from Antonia who I have known for many years when she was campaigning for young carers.
Antonia is active on her own carer website – Sincere Blog
Antonia is a freelance entertainment writer for over a decade, she works in the charity sector and has been an advocate for unpaid carers for 12 years.
Antonia creates digestible blog posts and social media content about local and national news about unpaid carers. She has created a safe space for unpaid carers via email to talk about the ups and downs of caring, signposting or general life updates.
What are the challenges of your role?
Not being able to help her loved one in certain situations, for example; when they are in pain or trying to balance it all and still have time for herself.
What future projects are you working on aimed at carers?
She is hoping to get back into blogging again and hosting fundraising events for unpaid carers.
What advice would you want to offer carers?
They don’t have to do this alone, whether it’s from a family member, friend, carer support professional or through Antonia’s email which is sincereblog@hotmail.com – definitely reach out and receive any assistance that is appropriate for you and your loved one.
Welcome back to the fourth carer activism interview video. These interviews discuss with experts of lived carer experience on the focus for unpaid carers. Most carer interviews are based on those caring for someone with mental illness, however in future that might change to include other caring experiences.
The fourth interview was with Karen Machin who is a researcher and carer peer supporter. She raises awareness of the importance of co-production, peer support and research.
Welcome back to the third in the series of carer activist interviews by Matthew McKenzie. These videos help not only bring awareness to what unpaid carers can do when helping others, but can also allow carers to learn about carer empowerment.
For this interview I spoke to Jaycee La Bouch fellow supporter of Carers UK and founder of Zen Laughter yoga therapy. Jaycee is not only a carer, but also finds ways to support other carers through the power of mental wellbeing. Every time I meet Jaycee, she always has a smile on her face.
Unpaid carers can go through many challenges that it can be so easy for them to neglect their own mental health and wellbeing. Watch the video of the challenges Jaycee went through and how she found the power to help others.
Welcome back to my latest project to raise awareness of the great work of carer activists. This time I was lucky to get an interview with the great Nadia Taylor. Nadia is a long time unpaid carer who is the chair of the excellent Carers Network charity that covers the city of Westminster, the London Borough of Hammersmith and Fulham and the Royal Borough of Kensington and Chelsea.
Nadia spoke about her lived experience as a carer and why she tries had to make a difference for other unpaid carers. She engages heavily with service providers and wants to make a change on national policy when it comes to supporting carers rights
A Caring Mind 