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East Sussex Carers Voices – Celebrating Carers Week 2026

East Dean Village Hall – 11 June 2026

Written by Matthew McKenzie, Speaker, Carer, Campaigner and Poet

As part of Carers Week 2026, I had the privilege of travelling to East Dean in East Sussex to speak at the East Sussex Carers Voices – Celebrating Carers Week Event, organised by Care for the Carers. The event brought together unpaid carers, carers’ organisations, NHS representatives, local authority leaders, health professionals, community groups and carers from across East Sussex to discuss the realities of caring and identify ways to improve support for unpaid carers.

The event was hosted by Dr Neil Churchill, Chair of Care for the Carers, who guided the day’s discussions and emphasised the vital role carers play in society. Throughout the day, carers shared their personal stories, experiences and recommendations directly with decision-makers and service providers.

This blog post provides an overview of the key themes, speakers and discussions for those who were unable to attend.

Opening Remarks – Dr Neil Churchill

Dr Neil Churchill opened the event by welcoming attendees and recognising the significant contribution unpaid carers make to families, communities and public services.

He highlighted several key challenges currently facing carers:

• Rising financial pressures and cost-of-living concerns.
• The growing number of carers leaving employment due to caring responsibilities.
• Increased risks of poor physical and mental health among carers.
• Social isolation and loneliness experienced by many carers.
• Growing concerns around carer burnout.

Dr Churchill stressed that the country depends heavily on unpaid carers and that health and social care systems would struggle to function without them. He also spoke about the importance of moving towards a model where carers are treated as equal partners in care rather than simply being expected to cope alone.

A key message from his introduction was that carers should not be left to navigate fragmented services by themselves. Instead, health, social care and voluntary sector organisations must work together more effectively to recognise, support and value carers.

Carer Stories and Lived Experience

One of the most powerful aspects of the event was hearing directly from carers themselves.

Miles Bing – Caring Through Dementia

The first speaker was Miles Bing, author of “Deadheaded: An Alzheimer’s Memoir by Mother and Son”.

Miles shared his family’s experience of supporting both of his parents through Alzheimer’s disease. His presentation explored the emotional impact of caring at a distance, the guilt often experienced by family members who live far away, and the difficulties of coordinating support across multiple services.

He spoke about:

• The long-term impact of dementia on families.
• The challenges of accessing services in rural areas.
• The lack of coordination between health and social care systems.
• The practical and emotional burden placed on carers.

Many attendees identified strongly with his comments regarding the need for carers to act as coordinators between multiple organisations that often fail to communicate effectively with one another.

Young Carers – Julia and Elsie

The audience then heard from young carers Julia and Elsie, whose presentations left a lasting impression on everyone in the room.

Both spoke honestly about growing up while caring for family members with complex needs. They described responsibilities that included supporting parents during health crises, helping siblings with disabilities and managing situations involving emergency services.

Their stories demonstrated:

• The hidden nature of young caring responsibilities.
• The emotional impact caring can have on children and young people.
• The importance of early intervention and support.
• The value of dedicated young carers services.

Perhaps most importantly, they highlighted that while caring can build resilience, no child should have to face these responsibilities without support.

The standing ovation they received reflected the courage and honesty with which they shared their experiences.

Round Table Discussions

Following the morning speakers, attendees participated in facilitated round table discussions.

These conversations focused on:

• The biggest issues facing carers over the next six months.
• Practical actions that could help carers in their caring role.
• Barriers to accessing support.
• Positive examples of support that should be expanded.

Several common themes emerged from these discussions:

Earlier Identification

Many carers reported not being recognised as carers until they had reached crisis point. Participants called for earlier identification within GP surgeries, hospitals and community services.

Access to Information

Attendees highlighted how difficult it can be to find accurate and timely information about available support.

Financial Pressures

Many carers discussed the financial impact of caring, including reduced employment opportunities and increasing household costs.

Mental Health and Wellbeing

Carers spoke about the emotional strain of caring and the importance of counselling, respite and peer support services.

Speaker sessions resumes

Diverse Communities and Caring

A particularly thought-provoking presentation was delivered by Manal Ahmed, who supports carers from ethnically diverse and refugee communities.

She discussed additional challenges experienced by carers from minority communities, including:

• Language barriers.
• Cultural differences.
• Social isolation.
• Displacement trauma.
• Immigration-related issues.
• Financial and emotional dependency.

Manal explained that many carers experience multiple layers of disadvantage and that support services must be culturally aware and accessible to everyone.

She also highlighted positive examples of community-building activities that help carers connect with one another and reduce isolation.

Her presentation reinforced the importance of ensuring that no carer is excluded from support because of their background, language or circumstances.

My Presentation – A Carer’s Journey

I was invited to speak about my own experiences as a young carer and later as an adult carer supporting family members with autism and serious mental illness.

One of the key messages I shared was that many carers do not initially recognise themselves as carers. Like many people, I simply viewed what I was doing as helping my family.

However, over time I found myself:

• Coordinating care.
• Supporting hospital admissions and discharges.
• Managing appointments.
• Advocating with professionals.
• Navigating complex systems.
• Supporting multiple family members simultaneously.

I spoke about how difficult it can be when carers are not listened to or involved in important decisions.

I also highlighted the importance of recognising carers as equal partners in care and ensuring that professionals understand the expertise carers develop through lived experience.

One of the central themes of my presentation was carers’ rights.

I encouraged carers to:

• Identify themselves as carers.
• Seek support from local carers organisations.
• Request carers assessments.
• Learn about their rights.
• Participate in co-production and service improvement.
• Share their experiences to help reduce stigma.

To conclude, I performed my poem “It’s My Right”, which focuses on the rights every carer should expect to receive, including recognition, respect, involvement, information and support.

Afternoon Reflections and Future Priorities

The afternoon session included reflections from senior leaders from Care for the Carers, East Sussex County Council and NHS Sussex.

Discussions focused on:

• Improving identification of carers.
• Supporting carers before crises occur.
• Encouraging carers to access support services.
• Learning from positive experiences of care.
• Strengthening partnerships between carers and professionals.

Representatives acknowledged the crucial role carers play and listened to feedback gathered throughout the day.

Many carers expressed concerns about navigating systems that can often feel complicated and difficult to access. There was broad agreement that services should be simpler, more joined-up and more responsive to carers’ needs.

Key Messages from the Day

Several important messages emerged consistently throughout the event:

Carers Need Recognition

Many carers remain hidden and unidentified. Earlier recognition can lead to earlier support.

Carers Need Practical Support

Information, respite, emotional support and financial advice remain essential.

Carers Must Be Involved

Carers are experts in the lives of the people they support and should be treated as partners in care.

Young Carers Need Protection

Children and young people with caring responsibilities require dedicated support and opportunities to thrive.

Communities Matter

Strong local networks can help reduce isolation and improve wellbeing.

Prevention Is Better Than Crisis Management

Supporting carers early can prevent breakdowns in caring arrangements and reduce pressure on services.

Conclusion

The East Sussex Carers Voices Event was an excellent example of what can happen when carers, professionals and decision-makers come together to listen, learn and work collaboratively.

Throughout the day, carers shared powerful stories of resilience, commitment and compassion. They also spoke honestly about the challenges they face and the changes they want to see. I also recognised Agi who does lots of work raising carer awareness in Sussex, she recently spoke at my national ethnic mental health carers forum. So it was great to see her there.

Dr Neil Churchill’s leadership as host helped create an environment where carers felt able to speak openly and where decision-makers could hear directly from those with lived experience.

As Carers Week 2026 comes to a close, the challenge now is to turn these conversations into meaningful action. Carers should not have to struggle to be recognised, supported or heard.

The event demonstrated that when carers’ voices are placed at the centre of discussions, better solutions can emerge for everyone.

Thank you to Care for the Carers, all speakers, volunteers, professionals and carers who contributed to such a valuable and inspiring day.

Carers Week Celebration 2026: A Day of Recognition, Reflection and Resilience

By Matthew McKenzie – Carer, Author, Poet and Host of the Carers UK Information Stall
10 June 2026, Perceval House, Ealing

As a carer myself, supporting both of my brothers, I understand that caring is often a role we never planned for, yet one we embrace out of love, duty and commitment. It can be rewarding, but it can also be isolating, exhausting and overwhelming. That is why events such as the Carers Week Celebration 2026, organised by Ealing Carers Partnership, Ealing Carers Hub and Ealing Council, are so important.

I think it reminds us that carers matter, that our voices are heard and that we are not alone.

Having the privilege of hosting the Carers UK information stall, while also attending as a carer, poet and author, I witnessed first-hand the incredible sense of community that filled Perceval House throughout the day.

The event brought together carers, professionals, charities, community organisations and council representatives for a celebration that was both informative and inspiring. Alongside the opportunity to gather information and advice, carers enjoyed complimentary refreshments, free manicures from students of Uxbridge College, artwork exhibitions and the chance to connect with others who truly understand the caring journey.

Carer Stalls of Support and Opportunities

One of the highlights of the day was the large exhibition area, where carers could meet a wide range of organisations offering support, guidance and practical services.

The information stalls represented the breadth of support available across Ealing and North West London. Throughout the day carers visited displays from organisations including:

Carers UK
Ealing Carers Partnership
Ealing Carers Hub
Mind
RISE
Ealing Advice Service
Harlington Hospice / Harlington Care
Independent Mental Health Advocacy Services
Volunteer Centre Ealing
Eating Disorders Support Services
Community wellbeing organisations
Health and social care providers
Local voluntary sector groups
Arts and creativity projects for carers
Community engagement and peer support groups

Many stalls offered practical information about carers’ rights, benefits, wellbeing support, mental health services, respite opportunities, advocacy and volunteering. Others showcased creative projects and community activities designed to reduce isolation and improve wellbeing.

It was also great to see Carer Poetry displayed including the Carer Poetry group I run with Ealing Carers.

At the Carers UK stall, I had numerous conversations with carers who were seeking information about financial support, carers’ assessments, employment rights and how to balance caring responsibilities with their own health and wellbeing. What struck me most was how many carers were attending such an event for the first time and discovering services they never knew existed.

The exhibition also featured the moving “A Carer Is…” artwork display, where carers expressed their experiences through art. The exhibition provided a powerful reminder that caring is not simply a task—it is an emotional journey filled with love, sacrifice, resilience and hope.

Listening to Carers: The Ealing Carers Forum and Council Presentations

A major focus of the day was the Carers Forum and Question & Answer Session, where carers had the opportunity to hear directly from council leaders and ask questions about services, support and future plans.

The event was opened by senior representatives who acknowledged the enormous contribution carers make every day.

Among the key speakers were:

Paul Driscoll, Cabinet Member for Healthy Equal Lives, Ealing Council
Kashmir Takhar, Ealing’s Carers Commissioner
Senior representatives from Adult Social Care
Sophie (Assistant Director, Adult Social Care)
Representatives from Ealing Carers Partnership
Representatives from Ealing Carers Hub
Jane Wheeler, Chief Executive of Harlington Hospice

Paul Driscoll spoke about his commitment to understanding carers’ experiences and ensuring that Ealing’s Carers Strategy becomes a meaningful reality rather than simply another policy document. He emphasised the importance of recognition, support and partnership working with carers.

The presentation by Kashmir Takhar focused on Ealing’s Carers Strategy, a joint strategy developed in partnership with carers, health services, social care and voluntary sector organisations. The strategy highlights four key priorities:

Identifying carers early in their caring journey.
Helping carers maintain family and community life.
Supporting carers’ physical and mental wellbeing.
Helping carers maximise income and achieve their potential.

The presentation revealed that there are approximately 24,000 carers in Ealing, although many remain hidden and do not identify themselves as carers. It also highlighted the growing challenges carers face around mental health, financial pressures, access to services, respite care and social isolation.

Particularly encouraging was hearing about plans to improve access to information, increase wellbeing activities, strengthen respite opportunities and expand support for young carers and working carers.

The Power of Carers’ Voices

One of the most important aspects of the forum was the open discussion session.

Carers shared their personal experiences, raising concerns about respite services, communication between council departments, transport arrangements and the challenges of navigating complex systems while already carrying significant caring responsibilities.

A particularly powerful contribution came from a carer who described how difficult it had been to arrange respite care due to poor coordination between services. The honesty and emotion behind this contribution resonated with many people in the room because it reflected experiences that carers often face but rarely have opportunities to discuss publicly.

Council representatives acknowledged these concerns and committed to improving communication, responsiveness and coordination across services. Assistant Director Sophie openly recognised that carers deserve better experiences and welcomed continued feedback to help shape future improvements.

Representatives from frontline organisations, including Ealing Advice Service, also highlighted recurring issues encountered by carers and stressed the importance of joined-up working between agencies.

Later in the session, Jane Wheeler from Harlington Hospice explained how the organisation’s carers’ short break service supports carers through home-based respite, community outings and specialist support. Her presentation reinforced the message that carers themselves need care, support and opportunities to recharge.

It was more than just a Carers Event

As the day came to a close, what remained was a sense of connection.

For many carers, simply being in a room full of people who understood their experiences was invaluable. There was laughter, conversation, shared stories and moments of reflection. New friendships were formed, information was exchanged and carers left knowing that support is available.

From my own perspective, hosting the Carers UK stall and speaking with so many dedicated carers reinforced why events like this matter. Caring can often feel invisible. The hours spent supporting loved ones frequently go unnoticed by wider society. Yet carers are the backbone of our communities and health systems.

The Carers Week Celebration reminded us that carers deserve recognition not just during one week each year but every day.

To everyone who organised the event, staffed a stall, delivered a presentation, volunteered their time or simply attended and shared their story, I thank you.

Most importantly, to every unpaid carer reading this: thank you for everything you do.

Carers Week 2026: Building Carer Friendly Communities and Supporting Unpaid Carers Across the UK

By Matthew McKenzie – Carer Ambassador

For Carers Week 2026, it takes place from 8–14 June and shines a spotlight on the millions of unpaid carers who provide essential care and support to family members, friends and loved ones throughout the UK.

This year’s theme, Building Carer Friendly Communities, highlights the need for workplaces, healthcare services, schools, local authorities and communities to better recognise and support unpaid carers.

Despite contributing billions of pounds worth of care each year, many unpaid carers continue to face challenges including financial hardship, social isolation, poor mental health and difficulties accessing support. So Carers Week aims to raise awareness of these issues while encouraging practical action to create a society where carers are valued, respected and included.

As a carer activist and founder of my site A Caring Mind, I am sure that creating carer-friendly communities starts with understanding the realities of caring. Whether you are caring for an ageing parent, a disabled child, a partner with a long-term condition or someone experiencing mental ill health, carers play a vital role in keeping families and communities together.

However, there are still many people do not identify themselves as carers and therefore miss out on important support, benefits and services. Carers Week 2026 provides an opportunity for individuals, organisations and policymakers to listen to carers’ experiences, champion carers’ rights and improve access to support for unpaid carers across the UK.

Watch my Carers Week 2026 video below to learn more about the campaign, this year’s theme and how you can get involved in supporting unpaid carers. Please share the video to help raise awareness and encourage more people to recognise the invaluable contribution that carers make every single day.

Together, we can build stronger, more inclusive and more carer-friendly communities

Volunteers’ Week 2026 UK – The Power of Volunteering and Caring

By Matthew McKenzie – Carer UK ambassador and volunteer

As proud volunteer with Carers UK and Carers Trust, and alongside healthcare teams in hospitals supporting unpaid carers and families. I want to take a moment to recognise the incredible contribution volunteers make every single day.

As we celebrate Volunteers’ Week 2026, across our communities, volunteers give their time, skills, compassion, and energy to help others, often without seeking recognition. Their impact is immeasurable.

For me, volunteering is about making a difference, no matter how small. Sometimes it is providing information and advice to a carer who feels overwhelmed. Sometimes it is speaking up for those whose voices are not being heard. Sometimes it is simply listening. These acts of kindness can change lives.

As carers, many of us already give so much of ourselves to support loved ones. Yet volunteering can also be a powerful way to create change, build connections, and strengthen our communities. It reminds us that we are not alone and that together we can make a positive impact.

Making Time for Black Mental Health Event – 4th Year Spring Anniversary

I recently attended the “Making Time for Black Mental Health” event hosted by Bella from Think Tenacity Academy CIC at Cottons Caribbean Restaurant in Vauxhall. The event took place on friday 22nd of May 2026

it was a reminder of the importance of safe community spaces that centre Black wellbeing. The event brought together over 100 attendees, including families, carers, advocates, therapists, Plus Healthwatch Southwark, Healthwatch Lambeth, CNWL Talking Therapies Service Westminster, Carers UK, alongside other community organisations supporting mental health awareness and wellbeing.

We were all united around conversations on mental health, lived experience, and reducing stigma within the Black community.

The event was officially opened by Folake Segun, CEO of Healthwatch Lambeth which led on to meaningful conversations, which I have created a video to show highlights of the event.

As a carer advocate, I found the event especially valuable because it highlighted how community-led support can create genuine impact.

The evening included a Q&A session with Black therapists and speakers who openly discussed mental health challenges, cultural understanding, and the importance of representation in support services.

There were also wellness stalls, books, information tables, and opportunities for local organisations to connect directly with the community. Seeing families, children, and professionals all engaging together showed how mental health conversations can become more accessible and less stigmatised when events are designed with inclusion at the centre.

What stood out most to me was the sense of togetherness and intentional care throughout the event. Think Tenacity’s mission to tackle health inequalities and create spaces where Black people feel seen, heard, and supported was evident in every part of the evening. Hosting the event at a vibrant riverside venue with free entry, wellbeing activities, and opportunities to socialise created an environment where people could relax while also engaging in serious and necessary discussions around mental health.

Events like this are essential because they remind us that advocacy, wellbeing, and community support all go hand in hand.

Find out more about Think Tenacity Academy CIC:
Contact: SerenaEventManager@thinktenacity.com

Next event date: 23rd September 2026
https://ThinkTenacity.eventbrite.com

Follow Think Tenacity:
https://www.tiktok.com/@thinktenacity
https://www.instagram.com/thinktenacity
https://www.youtube.com/@ThinkTenacity

Our Stories Matter – Poem by Matthew McKenzie #PCREF

Stories are powerful. They carry memory, experience, and truth in ways that forms and systems often cannot. For unpaid minority carers, our stories are not just reflections, they are essential to understanding the full picture of care.

I’ve recently shared a poem, “Our Stories Matter,” from my upcoming poetry book. It explores the importance of lived experience, intergenerational memory, and the voices that are too often overlooked within health and social care systems.

While assessments, care plans, and clinical notes tell part of the story, they rarely capture the depth of what families and carers experience every day. Our stories provide context. They bring meaning and complete the picture.

This is especially important within the context of PCREF, where recognising lived experience and cultural understanding is key to improving care and addressing inequalities. When carers’ voices are not heard, something vital is missing.

This poem is a reminder that our stories are central.

🎥 Watch “Our Stories Matter” here:
https://www.youtube.com/watch?v=_sVie4YSdbc

We Look After Each Other: A Poem of Care, Community, and Lived Experience

I’m proud to share “We Look After Each Other”.

The poem is a spoken word piece from my upcoming poetry collection Unpaid, Unseen and Yet Unbroken (launching 2026).

This poem centres the lived experiences of ethnic and minority mental health carers, where they continue to show up, often without recognition, navigating systems that can feel complex and unresponsive.

The poem focuses on the quiet strength, shared knowledge, and collective care that exist within our communities.

In the spirit of PCREF, this work highlights the importance of listening to lived experience, valuing cultural understanding, and recognising community as a source of resilience and healing

March 21 Still Matters: Standing Against Racial Discrimination

March 21 marks the International Day for the Elimination of Racial Discrimination, which is a day recognised across the world to remember, reflect, and take action.

This day was established following the tragic events of the Sharpeville Massacre in South Africa in 1960, where peaceful protestors lost their lives while standing against injustice. It is a reminder of how far we have come, but also how far we still need to go.

Racism is not just something we read about in history. It continues to exist in our societies, often in ways that are subtle, systemic, and deeply embedded. It can affect people’s opportunities, their confidence, and their sense of belonging.

As a carer activist, I see the impact of this in mental health and support systems. When people feel unheard, misunderstood, or treated unfairly, it can have lasting effects on their wellbeing. Care should be equal, compassionate, and inclusive for everyone.

This day is not only about raising awareness, but about encouraging action. Each of us has a role to play in challenging discrimination and promoting understanding.

That might mean listening more carefully to others’ experiences, educating ourselves, speaking up when something isn’t right, or simply showing empathy in our everyday interactions.

Change doesn’t always come from big gestures. It often starts with small, consistent actions.

March 21 is a reminder, but I think the responsibility is ongoing.

The question is: what will you do to stand against racism?

Why Unpaid Carers Must Be in the Lecture Theatre – Not Just the Waiting Room

By Matthew McKenzie, A Caring Mind (Carers UK Ambassador)

As an unpaid mental health carer, I have spent years navigating hospital corridors, GP practices, care plans, juggling crises, and long silences where carers are too often left out. I am sure unpaid carers are expected to hold families together, while notice early warning signs, and keep loved ones safe. Still I always mention most of us receive no formal training, and our knowledge is rarely recognised as expertise.

That is why recently teaching a module for the Masters course to mental health nursing students at King’s College London felt so important. Not after they qualify. Not once they are overwhelmed in practice. But before they step out into the field. The session took place 15th of January.

Why carer-led teaching matters

Unpaid carers sit at the sharp edge of the mental health system. We see what works, what harms, and what gets missed when professionals don’t fully understand the family context. When students hear directly from carers, learning moves beyond textbooks into real life into the emotional, practical, and ethical realities of care.

Training mental health professionals without carer voices is like teaching navigation without a map.

What I taught: lived experience as learning

The session I delivered was built entirely from a carer’s perspective and centred on one core message: you cannot deliver effective mental health care without working with carers.

The module covered:

My lived experience as an unpaid mental health carer
How I became a carer, the emotional impact, the daily responsibilities, and the toll caring can take on mental and physical health.
The hidden impact on carers
Burnout, stigma, isolation, guilt, and the reality that many carers are supporting professionals while receiving little support themselves.
Carers as partners, not problems
Exploring what happens when carers are ignored – and how outcomes improve when they are listened to, informed, and included.
The Triangle of Care
A strong emphasis on the Triangle of Care framework: the partnership between service user, carer, and professional. I challenged students to see carers as a vital link in the chain, not an optional extra.
Carers UK and carer identification
Highlighting the role of Carers UK in advocacy, rights, resources, and why professionals must help carers identify themselves early so they can access support.
Practical skills for future nurses
Listening without defensiveness, sharing information appropriately, involving carers in care planning, and understanding when carers need support themselves.
Interactive discussion and reflection
Students worked through real-life scenarios, asking: What would I do differently now that I understand the carer experience?

The shift we need in education

Most unpaid carers are not trained for their role. We learn through crisis, exhaustion, and trial and error. Mental health professionals, however, are trained, which means universities have a responsibility to ensure that training includes those of us living this reality every day.

Carer-led teaching builds empathy, improves communication, and ultimately leads to safer, more effective care. When students learn early that carers matter, they carry that mindset into practice.

A final thought

Unpaid carers are already part of the mental health workforce, it’s just the title unpaid, unsupported, and often unheard. So I feel bringing carers into universities is not a “nice extra”. It is absolutely essential.

If we want a mental health system that truly works, we must start by listening to those who never clock off.

Unpaid, Unseen and Yet Unbroken: A New Spoken Word Poem

By Matthew Mckenzie – facilitator of national ethnic mental health carers forum

I’m pleased to share “Unpaid, Unseen and Yet Unbroken”, a spoken word poetry video that marks the first poem released from my forthcoming poetry collection of the same name.

This first poem speaks from within the lived reality of unpaid mental health carers, particularly those from ethnic and marginalised communities whose labour is often overlooked, misunderstood, or taken for granted. It reflects moments many carers will recognise: waiting rooms, misrecognition, quiet endurance, and the strength it takes to keep showing up without acknowledgement.

🎥 Watch the spoken word video here:

The wider collection I am currently working on brings together poems shaped by care, fatigue, love, resilience, and survival. It is a body of work rooted in lived experience and community voices, offering poetry not only as expression, but as witness and affirmation.

This first poem sets the tone for what is to come, promoting honest, reflective, and unapologetic in its call for carers to be seen, heard, and respected.

This work is part of my ongoing commitment through my A Caring Mind youtube channel to use creativity as a way to challenge stigma, amplify unheard voices, and centre care as a vital social contribution.

More poems from this collection will be shared in the coming months.