Tag Archives: creative expression

Becoming a Human Book at the DUALITY Event – The Carer They Didn’t See

By Matthew McKenzie – Carer Activist and Carer Advocate

On 8 September 2026, I had the honour of attending the DUALITY event at King’s College London, held at Bush House.

The event was a research and public/community engagement event connected to the INTERCEPTION study, based in King’s Department of Global Health & Social Medicine, within the School of Global Affairs / Faculty of Social Science & Public Policy.

There was a packed agenda, which I have shown below.

  • Registration, refreshments and photo exhibition — Attendees arrived, had refreshments and had an opportunity to look around the community photography exhibition.
  • Welcome and introduction to DUALITY — The organisers introduced the event and its focus on ageing, ethnicity, health and experiences of living with multiple long-term conditions.
  • Research Panel: Ethnicity, Ageing and Health — Researchers discussed work exploring inequalities and experiences at the intersection of ethnicity, ageing, health and multiple long-term conditions.
  • King’s Sport & Wellness energiser — Attendees were invited to take part in accessible seated stretches and movement exercises.
  • Human Library — Attendees could “borrow” Living Books for short conversations, hearing personal stories intended to build understanding, foster empathy and challenge assumptions. My Living Book was “The Carer They Didn’t See.”
  • Community information booths — Organisations and community representatives provided information and resources. This was also where I supported the Carers UK stall.
  • DUALITY Photography Exhibition — Photographs used visual storytelling to explore support, health, ageing and lived experience. My photograph “The Carer They Didn’t See” was included in the exhibition.
  • Photography Competition Awards — Winners of the DUALITY Photography Competition were announced, with “The Carer They Didn’t See” selected as one of the winning entries.
  • Creative performance — The programme included a creative lived-experience performance exploring identity, Caribbean heritage, racism, family, memory and culture.
  • Keeping Fit with Multiple Long-Term Conditions — This discussion brought professional and lived-experience perspectives together to explore chronic conditions, exercise, confidence and wellbeing.
  • Dinner and networking — The evening concluded with food and an opportunity for attendees, researchers, community groups and people with lived experience to connect.

This was quite a different event for me. I have attended many conferences, workshops and involvement events over the years as an unpaid carer, carer advocate and speaker. This time, however, I wasn’t simply attending or presenting.

I became a book.

More specifically, I became a Living Book as part of the event’s Human Library.

My title was:

The Carer They Didn’t See

And by the end of the evening, that title would take on another meaning I hadn’t expected.

What was the DUALITY event?

DUALITY brought together research, lived experience, creativity, photography, health and conversations about ageing and multiple long-term conditions.

What I particularly appreciated was the emphasis on people’s experiences rather than simply presenting research about people.

Throughout the event there were presentations, discussions, creative displays and opportunities for people to connect with one another.

I also ran the Carers UK Stall along with other things I use to raise unpaid carer awareness

Photography was also an important part of the project. Participants from different parts of the world had taken part in workshops exploring photography as a way of capturing support, people’s inner and outer worlds, ageing and multiple long-term conditions.

But one of the most interesting parts for me was the Human Library.

When people become books

The Human Library turns the idea of a conventional library on its head.

Instead of borrowing a book from a shelf, you borrow a person.

The organisers explained that the Human Library is intended to foster empathy, challenge prejudice and provide a safe space in which people can ask questions of someone they might not ordinarily meet. Visitors browse the available titles and then spend a short period listening to that person’s story and having a conversation with them.

There were several Living Books available, each representing very different experiences.

My book was called The Carer They Didn’t See.

My short description read:

“I was a carer nobody counted, until grief became words, and words became my way to say: we’re here, and we matter.”

That sentence says a great deal about why I continue campaigning around unpaid carers.

For years I supported my mother, who lived with serious mental illness. Like many unpaid carers, much of what I did happened quietly and behind closed doors.

There was no uniform.

There was no job title.

Often there wasn’t even recognition that I was a carer.

Yet the responsibility was very real.

Being “read”

Being a Living Book is quite different from giving a presentation.

When presenting at a conference, I usually have slides, a topic and a limited amount of time in which to make particular points.

The Human Library was much more personal.

Someone chooses your “book” because something about its title interests them. They sit with you, listen and can ask questions.

That creates a different kind of conversation.

It also made me think about how powerful lived experience can be when people are given the space not merely to tell their story, but to have somebody genuinely listen to it.

The organisers themselves acknowledged that hearing stories we would not normally encounter can sometimes be challenging and thanked the Living Books for making the time and space for those conversations.

For unpaid carers, I think that is particularly important.

We spend a great deal of time discussing services, policies, strategies and systems. Those things matter enormously.

But behind every carer statistic is a human story.

The photograph of an unseen carer

There was another part of the event that became especially significant for me.

I had also entered a photograph into the DUALITY community photography competition.

The photograph looks deceptively simple.

It shows my mother’s coat and shawl resting on a chair. My own chair sits partly outside the frame.

That positioning was deliberate.

My mother’s chair occupies the centre because she was the person receiving support. My own chair sits towards the edge because I wanted to represent something that many unpaid carers experience:

We are always there, but we are not always seen.

I also deliberately kept the ordinary home environment visible.

Caring doesn’t only happen in hospitals, clinics and professional environments.

A huge amount of caring happens quietly in people’s homes.

There may be no audience to see the difficult nights, the worry, advocacy, appointments, emotional support or constant vigilance.

But the carer is there.

When photography becomes lived experience

One thing I enjoyed about the photography project was learning that a powerful photograph doesn’t necessarily require expensive equipment or an elaborate setting.

The workshops explored techniques including framing, symbolic composition, symmetry, colour and other approaches to visual storytelling.

For me, however, the emotional meaning of the photograph mattered most.

The coat and shawl belonged to my mother.

The empty chair therefore represents much more than furniture.

It connects the photograph directly to my own experience of caring, bereavement and the work I now do to raise awareness of unpaid carers.

During the judging discussion, I was delighted to hear The Carer They Didn’t See specifically mentioned as one of the photographs demonstrating different dimensions of support.

I wasn’t expecting what happened next.

Winning the DUALITY Photography Competition

When the winners were announced, my name was called.

The Carer They Didn’t See had been selected as one of the winning entries.

I received a medal engraved:

WINNER
Matthew McKenzie
Duality Photo Competition
2026

I was very surprised.

I won a four-week personal training block with a coach at the King’s Sports and Wellness Centre in Waterloo.

For me, though, the most meaningful prize was the recognition of the story behind the photograph.

It meant that an image representing an unpaid carer’s experience had been noticed.

And perhaps there is some irony in that.

I created a photograph called The Carer They Didn’t See.

And people saw it.

Listening to other lived experiences

The evening was certainly not only about my own story.

One of the strengths of DUALITY was hearing from people with very different experiences.

There was discussion about musculoskeletal conditions, multiple long-term conditions, physical activity, persistent pain and the importance of taking a more holistic approach to people’s health.

I was particularly struck by the lived-experience discussion about fibromyalgia.

One speaker described how developing chronic pain changed her life and even affected her sense of identity. She spoke about a long and frustrating journey through healthcare before receiving a diagnosis, and about sometimes feeling that her symptoms were being questioned or invalidated.

She also described how movement and supported exercise helped her reconnect with her body, understand her limits and rebuild confidence.

One comment particularly fitted the wider theme of the evening: we often cannot see what another person is experiencing.

Invisible conditions and invisible caring have something important in common.

Culture, identity and memory

Another powerful part of the evening explored culture, memory and identity.

We heard personal reflections on growing up in London’s East End, experiences of racism, Caribbean heritage, family, music and the ways culture can become a source of strength and protection.

That fitted beautifully with the idea of DUALITY.

From grief into creativity

Since losing my mother, I have increasingly used writing, poetry, blogging and other creative approaches to explore my experiences of unpaid caring.

Creativity allows me to communicate things that sometimes don’t fit neatly into a presentation or policy document.

A photograph can do the same thing.

A chair.

A coat.

A shawl.

An empty space.

For somebody else, these may simply be everyday objects.

For me they contain memories of caring.

And when placed together within a frame, they say something about the millions of unpaid carers whose contribution can remain just outside society’s field of vision.

Recognition as a Living Book

I was also very grateful to receive a Certificate of Appreciation recognising my contribution as a Living Book at the DUALITY Human Library.

That certificate and the photography medal represent two quite different parts of the same day.

One recognises telling a story.

The other recognises showing a story.

Both were ultimately about lived experience.

The carer they finally saw

I left King’s College London thinking again about the title I had chosen:

The Carer They Didn’t See.

For many years, that description could have applied to me.

It could still apply to countless unpaid carers today.

They may be sitting beside someone in hospital.

They may be managing a crisis at home.

They may be trying to navigate mental health services.

They may be a son, daughter, parent, sibling, partner, friend or neighbour.

And sometimes they don’t even recognise themselves as carers.

Events such as DUALITY provide another way of making those experiences visible.

But people’s stories matter too.

I went to King’s College London expecting to share mine as a Human Book.

I didn’t expect to leave wearing a gold medal for a photograph inspired by that same caring journey.

Perhaps that is why the day meant so much to me.

For once, “The Carer They Didn’t See” was seen.

2nd Voices & Verses – PCREF Poetry Event

By Matthew McKenzie – Cygnet PCREF Carer Lead & Carer Ambassador

Cygnet PCREF Carer Lead & Carer Ambassador

On 4 August 2026, unpaid carers, professionals and people with lived experience came together at Cygnet Churchill for the second Voices & Verses Carers Poetry Event. The purpose of the afternoon was not simply to read poetry, but to create a safe space where carers could express experiences that are often overlooked within mental health services.

The event formed part of Cygnet’s ongoing commitment to the Patient and Carer Race Equality Framework (PCREF) by exploring how creativity, culture and storytelling can strengthen co-production and improve relationships between carers and services. The afternoon was designed around inclusion, psychological safety and optional participation, allowing people to contribute in whatever way felt comfortable to them.

As someone who has cared for family members affected by severe mental illness for many years, I continue to believe that poetry allows carers to communicate emotions that ordinary conversations often fail to capture. Statistics tell us what is happening, but poetry often explains how it feels. This aligns closely with PCREF’s ambition to humanise care, improve understanding of racial inequalities and ensure lived experience genuinely influences service development.

The event opened with readings from my forthcoming collection of PCREF poems, including “Change is Possible.” Rather than focusing solely on racism, the discussion explored hope, community, partnership, co-production and carers becoming recognised as equal partners within mental health care. Participants reflected that although change often feels slow, meaningful progress can still occur when carers are given opportunities to influence services.

One participant commented that the poem should never have needed to exist because carers should already be recognised and listened to. Another reflected that the line “those doors open slowly” accurately described the experience of advocating for loved ones over many years. These discussions reminded everyone that poetry can stimulate conversations which may never emerge during formal meetings or consultations.

One of the highlights of the afternoon was a collaborative workshop led by Jo Lambert, introducing participants to the Hold the Hope project through art, colour and reflection.

Rather than asking carers to simply colour a picture, participants were encouraged to think about what hope, equality, dignity and belonging meant to them personally. They selected PCREF-related words, explored why particular colours reflected their emotions and discussed how creativity can communicate experiences beyond spoken language.

The discussion demonstrated that every participant interpreted the same image differently.

Some chose calming blues to represent peace and trust.

Others used brighter colours to symbolise recovery, resilience and optimism.

Several carers explained that colouring became a form of mindfulness, allowing them to process difficult emotions whilst talking with others.

The activity also highlighted something particularly important from a lived experience perspective. Mental health carers frequently spend years speaking on behalf of others. Opportunities to express their own feelings are much rarer. Through art and poetry, carers were able to focus on themselves without feeling they had to justify or defend their experiences.

This reinforced one of the strongest messages of the day:

Creative expression is not simply an enjoyable activity, it is another form of lived experience evidence.

Participants also appreciated that there were no “right” or “wrong” answers. Every artwork reflected an individual caring journey, demonstrating the diversity that exists within the unpaid carer community.

The power of shared lived experience

Perhaps the most valuable aspect of the event was the conversation that developed naturally between carers.

Discussions moved beyond poetry into themes including:

  • feeling excluded because of confidentiality
  • racial inequality within services
  • the emotional burden of long-term caring
  • recognition of carers as equal partners
  • loss of identity through caring
  • maintaining hope during crisis
  • the importance of community support

Many participants reflected that carers often possess significant practical knowledge but are still not viewed as equal partners within clinical decision making.

One participant explained that carers are frequently expected to educate professionals whilst simultaneously managing the emotional impact of supporting someone in crisis. Others spoke about the exhaustion of constantly advocating for loved ones whilst trying to maintain their own wellbeing.

These conversations demonstrated exactly why creative events have an important place within PCREF. Rather than collecting another questionnaire, participants were able to describe experiences in their own words, using poetry, storytelling and discussion.

Importantly, professionals attending the session also listened.

This helped create genuine dialogue rather than the traditional model where professionals ask questions and carers provide short answers.

The atmosphere remained respectful throughout, allowing difficult topics including racism, discrimination and feeling unheard to be explored constructively.

For many attendees, simply meeting other carers who understood their experiences reduced feelings of isolation.

Celebrating culture and creativity

The second half of the afternoon celebrated cultural diversity through music, spoken word and performance.

Faith shared “Soothing Blue,” a poem that had been transformed into music. Hearing lived experience expressed through song demonstrated another creative way carers can communicate emotions that may otherwise remain hidden. Participants reflected on themes of healing, identity and rediscovering themselves beyond their caring role.

Brenda then performed traditional Jamaican folk songs, including “Chi-Chi Bud Oh” and “By the Rivers of Babylon.” These performances reminded everyone that culture forms an important part of identity and wellbeing. Cultural expression can strengthen belonging and create opportunities for people from different backgrounds to learn from one another.

The PCREF word search and poetry activity further encouraged participants to explore words such as community, dignity, inclusion, hope, equality and compassion before creating short poems of their own. What initially appeared to be a simple puzzle became another opportunity for reflection and discussion.

Throughout the afternoon there was laughter, encouragement and mutual support. Participants applauded one another’s contributions regardless of previous poetry experience, reinforcing that everyone had something valuable to contribute.

By combining poetry, visual art, music and conversation, the event demonstrated that creativity can become a powerful vehicle for engagement with carers who may not usually participate in traditional consultation events.

Reflections and looking ahead

Looking back as both a lived experience carer and PCREF Carer Lead, I believe this event demonstrated several important lessons.

Firstly, carers do not simply want to be consulted, they want to be heard.

Secondly, creative approaches allow conversations to emerge that formal meetings often miss.

Thirdly, culture matters. When people feel safe enough to bring their whole identity into a room, discussions become richer, more authentic and more meaningful.

The Voices & Verses programme is gradually becoming more than a poetry group. It is developing into a community where carers can connect, learn from one another and influence future mental health services through creativity.

Future events will continue to develop this approach by:

  • expanding hybrid participation so more carers can join remotely;
  • increasing opportunities for cultural storytelling;
  • creating more collaborative art and poetry projects;
  • transforming poems into music and other creative media;
  • strengthening links between PCREF, Triangle of Care and co-production.

Most importantly, the event reminded us that lived experience should never be viewed as an optional extra.

Every poem, every conversation and every shared story represented expertise developed through years of caring.

PCREF asks organisations to listen more carefully to diverse communities.

This event showed that when carers are given the right environment, they do not simply speak—they inspire, educate and help shape better mental health services for everyone.

South West London Mental Health carers group update for June 2025

A Space to Share, a Space to Be Heard

The session opened with updates and heartfelt check-ins. One of our carer members, shared a deeply personal and challenging situation regarding her loved ones declining mental and physical health. Despite strained family dynamics and the emotional burden of caring, a carer is courageously advocating for her loved one and seeking support through nursing services and assessments.

Peer Support: Insights from Experience

Long-time members offered valuable perspectives from their own journeys. A carer shared their struggle supporting individuals, which showed a stark reminder of the emotional and logistical toll caring can take. Another carer encouraged fellow carers to prioritise their own well-being, even in small ways a cup of tea, a short walk, a moment to breathe.

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Lewisham, Southwark & Lambeth Mental Health carer forum – June 2025 update

About the Forum:
The Lewisham, Lambeth & Southwark Carers Forum is a collaborative online space that brings together unpaid carers, carer leads, mental health professionals, and support organizations to share experiences, raise concerns, and influence change. Focused primarily on mental health caregiving, the forum serves as a platform for peer support, policy updates, training insights, and service development. Led by carer advocate Matthew McKenzie, the group fosters empowerment through regular discussions, creative expression, and co-produced solutions, ensuring carers’ voices are heard across local systems and beyond.

Carers Week Collaboration Discussion

The meeting began with introductions from Matthew McKenzie, who leads a merged online carers group, and other participants including Yvonne, a carers navigator at Southwark Carers, and Margaret, a carer representative with the Royal College of Psychiatrists. The group discussed Carers Week activities and their various roles in supporting carers across different organizations. Karen Hooper, connected with the Lambeth Living Well Collaborative, while Lee Roach, the carers lead for South London & Maudsley in Lambeth, shared his involvement with the Trustwide Family and Carers Committee.

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Voices of Mental Health Carers: Poetry & Stories

The Power of Poetry and Storytelling in the Lives of Carers

Caring for a loved one with mental health challenges or chronic illness is a journey marked by both hardship and hope. Too often, the voices of carers those who provide unpaid, tireless support are overlooked in the broader conversation about health and wellbeing. Yet, as this moving gathering of carers and poets reveals, storytelling and poetry can be transformative tools for connection, healing, and advocacy. So it was an honour to host our first poetry event at Cygnet Churchill for the 13th of June during Carers Week 2025

This Blog explores the themes, experiences, and creative expressions shared by carers, drawing from a vibrant community event centered on poetry, storytelling, and the lived realities of those who care. Through their words, we gain insight into the emotional landscape of caring, the challenges faced, and the resilience that emerges when stories are shared.

To watch the performance, please view the video below.

Giving Carers a Voice: The Motivation Behind the Book

The host of the event was myself (Matthew McKenzie), as a prolific author and advocate, where I have dedicated my eighth book to amplifying the voices of mental health carers. For me, books are more than just a means of communication they are a way to reach people who might otherwise remain unheard.

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