By Matthew McKenzie FRSA BEM – Triangle of Care community chair
As a carer living in Lewisham, I know just how important it is that our voices are heard and that the support available truly meets our needs. Whether we’re looking after a parent, a partner, a child, or a friend, we all share the same challenges balancing care responsibilities, work, our own wellbeing, and often feeling invisible in the process.
That’s why I wanted to share something that directly affects all of us. Lewisham Council and the NHS South East London ICB are currently developing a new Action Plan for Unpaid Carers (2025–2028). This plan will set out how the Council aims to identify, value, and support more carers over the next few years.
The team leading this work, including a new member who recently joined the Adults Integrated Commissioning Team, is reaching out to carers across the borough to get our feedback.
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.
Help raise awareness for unpaid mental health carers during Carers Week 2025. Learn how to support and recognize their vital, often unseen role in society. To watch the video of this blog, click the video below
Recognizing the Unseen: The Vital Role of Unpaid Carers in Mental Health
Every year, Carers Week serves as a powerful reminder of the millions of individuals who dedicate their lives to supporting loved ones with health challenges often without recognition, compensation, or adequate support.
Welcome to another blog and awareness video by carer activist Matthew McKenzie FRSA BEM. If you wish to see the awareness below, please click below.
Raising Awareness: The Unseen Heroes of Parkinson’s Disease
Parkinson’s Disease, a progressive neurological condition predominantly affecting movement and coordination, often evokes the imagery of tremors and physical discomfort. Yet, beyond these visible symptoms lies an intricate complexity that reshapes daily life for both those diagnosed and the caregivers – the unsung heroes standing resiliently behind them.
As we mark World Parkinson’s Day 2025, it is imperative to delve deep into the unseen facets of this journey, particularly focusing on driving and the often-overlooked unpaid carers who tirelessly offer support, love, and patience against formidable odds.
Understanding Parkinson’s Disease: A Complex Condition
Parkinson’s Disease is more than an ailment of tremors. This progressive neurological disorder brings with it a range of symptoms that affect mobility, movement, and coordination, making daily tasks increasingly challenging. However, that’s merely the surface. The true complexity of Parkinson’s lies in its unpredictable nature, no two journeys are the same. Each individual experiences a unique set of challenges, and by extension, so do their families and carers.
The Impact on Mobility and Beyond
While the loss of coordinated movement is a significant indicator, Parkinson’s Disease affects much more than the physical. It impacts daily activities, altering how individuals interact with their environment and the people around them. This transformation extends beyond the individual, touching families and communities and reshaping relationships in profound ways.
The Role of Unpaid Carers: Strength and Resilience in Silence
For every person diagnosed with Parkinson’s Disease, there usually stands an unpaid carer – a partner, child, friend, or close companion who navigates this journey alongside them. These carers exhibit an unwavering commitment marked by strength and resilience, often facing their own set of challenges including emotional, physical, and financial strains. It is crucial to acknowledge their dedication and raise awareness about the indispensable role they play.
Life Beyond Diagnosis: A New Normal
Carers find their lives dramatically altered as they take on responsibilities that extend far beyond regular caregiving duties. There’s no clocking out, no salary, and hardly any spotlight. Carers prioritize the needs of the person with Parkinson’s above their own, often dealing with the emotional toll of the disease. They embody strength – the kind needed to wake up each day and face unknown variables, to push forward despite physical and emotional exhaustion.
The Intersection of Parkinson’s and Driving: Independence and Freedom
Driving symbolizes independence, connection, and freedom – aspects that those living with Parkinson’s struggle to hold on to. For many, driving is more than a convenience; it is a crucial part of their identity and autonomy. However, the progression of Parkinson’s can compromise these abilities, bringing about new challenges and fears.
The New Role of Carers in Mobility
Carers play a significant role in helping to navigate this new reality. They advocate, co-pilot, and sometimes take over the wheel in both a literal and emotional sense. Their support becomes an anchor for the person with Parkinson’s, helping them maintain some semblance of independence and connection with the world.
The Collective Effort: Parkinson’s UK and Global Initiatives
World Parkinson’s Day is spearheaded by a global alliance comprising approximately 80 Parkinson’s organizations, unified in their mission to raise awareness and advocate for those affected. Parkinson’s UK stands at the forefront of this initiative, leading the fight for better care, support, and services. They emphasize the importance of community, providing expert guidance and an invaluable support network for both patients and carers.
Advocacy and Community Support
These organizations work tirelessly to promote awareness, engage in advocacy efforts, and foster a sense of community. They provide a platform for those affected by Parkinson’s to share their experiences, find support, and fight for a better quality of life. Through these collective efforts, the aim is to ensure that no one faces this journey alone.
A Call to Action: Recognizing and Supporting Carers
As we commemorate World Parkinson’s Day, it is essential to recognize the people standing behind those with Parkinson’s. These carers often carry a significant portion of the burden, usually unnoticed and unacknowledged. Raising awareness about their contributions is vital to ensure they do not have to bear this weight in silence.
Driving Forward Together
The road ahead requires a collective effort to drive forward, not just physically but in terms of societal understanding and support. It’s about creating a world that truly acknowledges the challenges of living with Parkinson’s and equally the dedication of those who love and care through its trials. Together, by sharing this mission, we can make a meaningful difference in the lives of individuals with Parkinson’s and their carers.
Thank you for taking the time to read and understand the multifaceted journey of Parkinson’s Disease on this World Parkinson’s Day 2025. Let’s continue to support, advocate, and drive forward towards a better world for those living with and caring for Parkinson’s Disease.
Understanding Unpaid Carers and the Vital Role of Carer Centers
This blog is by carer activist Matthew McKenzie. In the UK, millions of people, often unnoticed and unappreciated, dedicate their lives to caring for family members with long-term physical or mental health conditions. These unpaid carers are the backbone of the caregiving system, yet they face numerous challenges daily. Here, we delve into the crucial role of carer centers, the obstacles they encounter, and potential solutions to sustain and enhance their vital services.
Hello everyone. I am Matthew McKenzie, Carer Activist, poet and author. Volunteer for Carers UK, Carers Trust and Macmillan Cancer support to raise awareness of unpaid carers using my lived experience of caring.
At the time of this blog post it is Carers Week 2024. Carers Week 2024 could not arrive at such a better time, especially with an election happening.
For Carers Week 2024, the theme is “Putting Carers on the Map”. I know many carers are facing so many challenges in their role. This could be down to difficultly providing unpaid care, getting engagement from health & Social care services or even being identified as carers.
Many carers up and down the country can be easily hidden, they carry on with their caring role unaware of the support that can be offered to them.
With an election due to take place, the chance to put carers on the map has never been greater. It is an excellent chance to use our voices, experience of care and connections to continue to raise awareness.
So I am counting on many to help raise that much needed awareness of Carers Week. If you are a carer, health professional or someone with lived experience, it might be worth looking out for events from 10th of June to the 16th of June.
I will continue to write and promote carer events nationwide and do all I can to help raise awareness of carers, I hope you can as well. You can sign a pledge on the Carers Week website or you can run an event yourself. There is nothing too small to place carers on the map.
Poem for Carers Week
For carers week to share It helps to be aware That if you really care Listen up for your own welfare
Its best you are not ignored Noted a carer to be on record For support is your reward So social care back onboard
For Carers week is here With events to promote and shareb Its worth attending, just be there To learn about unpaid care
So please dont be ignored It something you cant afford Support and help explored Faith in the system restored
A Caring Mind 