PCREF Poetry: Race, Mental Health and Unpaid Carers

Poetry by Matthew McKenzie — exploring caring, identity, belonging and the need to be heard.

Welcome to my PCREF poetry project. Through poetry and filmed readings, I explore the experiences of unpaid carers, particularly Black and other ethnic minority carers supporting someone with mental ill health.

The poems open conversations about racism, cultural understanding, trust and the relationships between families and mental health services. They also celebrate creativity, community and the people behind the caring role.

Why PCREF and Poetry?

PCREF stands for the Patient and Carer Race Equality Framework.

For me, connecting poetry with PCREF means making space for experiences that can be difficult to express in meetings, assessments or formal feedback. A poem offers another way to speak about feeling excluded, finding support or wanting services to understand your family.

These are personal and creative contributions to conversations about race equality and carer inclusion. My hope is that they encourage people to listen, reflect and consider what needs to change.

Start Here: A Featured Poem

Creativity as the Expression — Poem 41

How do we explain our caring experiences when the words used in meetings, assessments and care plans do not quite capture what we want to say?

This poem explores creativity as a way of finding a voice and sharing experiences of caring.

Reflect: How can we make more room for carers to express themselves in their own way?

Explore the PCREF Poetry Collection

Explore my published poetry about race, mental health and unpaid caring. Click a poem’s title to watch it on YouTube.

Poem	Watch on YouTube
4	Who Is
9	Today I Prayed
11	Fear Has Roots
16	We Look After Each Other
29	Nothing About Us Without Us
30	Language as Comfort
37	Our Stories Matter
41	Creativity as the Expression
46	My Anger Without Permission
49	Gatekeeping Care
53	Racial Inequality in Mental Health

The poem numbers identify pieces within the collection. More video links will be added as this page develops.

More Poetry

Unpaid, Unseen and Yet Unbroken

Explore another spoken-word reading from my wider poetry project recognising ethnic mental health carers’ experiences.

Poetry in Action

Voices & Verses — PCREF Carer Poetry Event

See how poetry brings carers together through creativity, shared experiences and conversation.

Browse more videos on A Caring Mind

Visit A Caring Mind on YouTube to explore the poems

You can find a particular reading by searching for its title within my channel.

Poetry in Action: Voices & Verses

Poetry can bring carers together as well as help individuals find their voice.

My channel also includes poetry event recordings and community activities, including Voices & Verses — Carers Poetry Event: PCREF in Action.

If you would like to find out about joining a carer poetry group or referring carers to a session, please get in touch.

Use a Poem to Begin a Conversation

Carer groups, PCREF networks, staff teams, libraries and community organisations may find these poems useful as starting points for reflection.

Choose a poem, watch or listen together, and consider:

What words or images stayed with you?
What does the poem prompt you to consider about carers’ experiences?
Whose voices might be missing from your service or group?
What practical change could help carers feel heard and included?

Allow people to choose whether to share their own experiences. Listening is a valuable form of participation too.

Further Learning

For those interested in exploring the wider issues, my YouTube channel also includes:

Listening Differently to Black Carers with Poetry, and PCREF
Putting the C (Carer) into PCREF — Triangle of Care & Racial Equity in NHS Mental Health
Triangle of Care Through an Anti-Racist Lens: Are All Carers Equally Heard?
Hard to Reach or Easy to Ignore — Ethnic Mental Health Carers
Why Black Carers Struggle to Access Mental Health Support

These presentations offer further opportunities to consider race equality, lived experience and meaningful carer involvement.

About Matthew McKenzie

I am Matthew McKenzie, an unpaid carer, carer advocate, author and poet.

My work draws on my lived experience of supporting family members and my commitment to improving recognition and inclusion for unpaid carers. Through A Caring Mind, I bring together caring, mental health, race equality and creative expression.

Poetry gives me another way to raise questions, share experiences and encourage conversations that might otherwise remain unheard.

Sharing, Enquiries and Getting Involved

You can support the project by sharing this page or links to the original videos with carers, colleagues and community networks.

Please credit Matthew McKenzie / A Caring Mind when sharing links. For permission to reproduce poems, include them in publications or training materials, or arrange a reading or workshop, please contact me through this website.

I welcome enquiries from carer centres, NHS teams, PCREF leads, libraries, arts organisations and others interested in creating more space for carers’ voices.

Watch and subscribe to A Caring Mind on YouTube

Carers’ experiences deserve to be heard. Poetry offers another way to listen.

Creativity as the Expression – Poem 41: Finding a Voice Through Poetry

How do we explain our caring experiences when the words used in meetings, assessments and care plans do not quite capture what we want to say?

My latest PCREF poetry video, “Creativity as the Expression”, reflects on this question. It is Poem 41 from my upcoming poetry book, Unpaid, Unseen and Yet Unbroken, which explores the experiences of ethnic minority unpaid mental health carers.

When the words are difficult to find

As an unpaid carer, there can be times when you know what you have witnessed and understand what worries you, yet struggle to explain it in the language expected by services.

You might leave a meeting thinking about everything you wanted to say. The emotional weight of caring, family history and the everyday changes you notice do not always fit neatly into an assessment or a short conversation.

This poem begins with that struggle:

I struggle to speak the clinical language
I stumble on that path
but over the years I found a new way to express myself
Using that creativity as expression

For me, poetry offers space to find those words and express them in my own way.

Writing to cope, express and reveal

Writing gives me time to reflect on experiences that can be difficult to speak about. It allows feelings, memories and questions to take shape without the pressure of having to explain everything at once.

In the poem, I describe poetry as an art that helps me stay whole. That matters because carers also need opportunities to express who we are and how caring affects us.

Our creativity can reveal parts of our lives that others may never see during a meeting.

Reclaiming our own stories

Carers are often described through records, professional conversations and decisions made within services. Having the opportunity to tell our own stories matters.

“Creativity as the Expression” explores that wish to make the caring role visible and reclaim the narrative. Poetry allows us to speak from our own standpoint, using words that carry meaning for us.

It can also open a conversation. A poem may help someone pause, ask a question or recognise an experience they had not previously understood.

A connection to PCREF

My PCREF poetry work draws attention to the voices of ethnic minority unpaid mental health carers. PCREF stands for the Patient and Carer Race Equality Framework.

Through this poem, I want to encourage reflection on whose voices are heard and which forms of expression are valued. Confidence with professional language should not determine how seriously a carer’s experience is taken.

The poem imagines creativity as a bridge: a way to communicate experiences that might otherwise be difficult to explain or record. For that bridge to work, there must also be a willingness to listen.

One voice can become many

The final verse moves from personal expression towards community:

My creativity will reveal that experience
My lived experience
I will share it back to others
Back to the community, where one voice can become many

Sharing a poem can help another carer recognise something from their own life. It can create a moment of connection and give others encouragement to share their experiences too.

I hope this video offers that invitation.

Watch the poem below, and please like, share and subscribe to A Caring Mind for more poetry and unpaid carer voices.

Watch “Creativity as the Expression” on YouTube

Please also keep an eye out for my upcoming poetry book, Unpaid, Unseen and Yet Unbroken.

Has poetry, art, music or another creative activity helped you express your caring experience? You are welcome to share your thoughts in the comments.

National Ethnic Mental Health Carer Forum: September Update 2026

By Matthew McKenzie – Chair, National Ethnic Mental Health Carers Forum

Welcome back to A Caring Mind. September’s National Ethnic Mental Health Carers Forum brought together unpaid carers, NHS professionals, researchers and community representatives to discuss racial equality, community involvement and support for families.

The forum connects carers’ lived experience with organisations working to improve services. It provides opportunities to ask questions, share approaches and challenge barriers affecting ethnic minority carers and those they support.

September’s Agenda

The meeting covered:

Matthew McKenzie: Meaningful involvement from an ethnic mental health carer’s perspective.
Olivia, presenting work from Black Country mental health services: PCREF, community ambassadors and building trust.
Discovering Livability research presentation: Community approaches to suicide prevention and what makes life liveable.
Forum discussion: Carer support, representation, the emotional demands of involvement and accountability.

Opening Presentation: Meaningful Influence for Ethnic Mental Health Carers

Presenter: Matthew McKenzie

I opened the meeting by reflecting on why I established the forum and the importance of carers influencing both individual care and wider service development.

Carers bring knowledge about the person they support, family relationships, cultural background, faith and everyday needs. However, some still encounter assumptions about their role or find themselves having to fight to be believed.

Language differences, cultural misunderstandings and uncertainty around confidentiality can make it difficult to obtain advice or contribute to decisions.

I outlined some practical examples of meaningful involvement:

Recording carers’ concerns and explaining what happens next.
Involving carers before care plans and decisions are settled.
Recognising cultural needs without treating difference as a problem.
Showing how carers’ contributions have changed practice.

Putting the Carer into PCREF

I also discussed the importance of the Patient and Carer Race Equality Framework (PCREF) recognising carers’ own experiences of racial inequality.

Carers need opportunities to help shape, measure and review the work organisations undertake. Their involvement should include being told what changed because they spoke.

I asked those attending to consider where ethnic minority carers still have to fight to be believed, and what practical change services could make over the coming months.

Questions and Discussion: Disability, Culture and Being Believed

Contributors described barriers affecting disabled carers and families whose needs cross several services.

Members highlighted how discrimination can appear through everyday assumptions, inaccessible processes and a failure to understand cultural differences. Another concern was the gap between constructive conversations with staff and decisions made elsewhere in an organisation.

The discussion reinforced an important point: building relationships within an engagement group must lead to influence over the decisions affecting families.

Black Country Update: Community Ambassadors, PCREF and Building Trust

Presenter: Olivia – working on health inequalities and PCREF in Black Country mental health services

Olivia shared an approach bringing together service data, community insight and organisational accountability.

She explained that data can help identify who is accessing services and which communities appear to be missing. However, conversations with patients, carers and community organisations are needed to understand the reasons behind those patterns.

Recognising Community Expertise

Olivia described working with paid community ambassadors connected to grassroots organisations. Through their networks, the engagement work had reached nearly 900 people.

Payment recognised the time, knowledge and expertise ambassadors contributed. The approach also considered practical barriers to involvement, including travel and childcare.

An important message was that communities were tired of repeatedly describing their experiences without seeing change. Conversations therefore explored what would build trust, how people wanted information communicated and what would make participation worthwhile.

Connecting Communities with Decision-Makers

The ambassadors’ involvement extended beyond gathering feedback. Olivia described opportunities to connect with senior leaders, contribute to recruitment panels and participate in ward visits.

We also heard about community work bringing conversations about psychosis into a familiar setting through cooking and shared meals. This offered an example of meeting people in environments where they felt comfortable and could build relationships.

Community feedback was also informing workforce learning, including racial trauma training.

Questions and Discussion: Representation, Resources and Honest Feedback

Members raised questions about the involvement of Black men and how engagement responds to different ages and communities.

Olivia explained that photographs did not represent everyone involved and acknowledged that widening participation remained an ongoing process. She also described working with organisations connected to different groups, rather than expecting one approach to suit everyone.

When asked about feedback, she emphasised the importance of honest responses. The aim was to understand people’s experiences and respond to them.

Funding was another concern. Olivia described the importance of senior leadership commitment, dedicated resources and connecting PCREF with wider organisational priorities.

Protecting People Who Share Lived Experience

A further discussion considered the emotional demands of contributing to racial trauma training.

Members asked how organisations support people who revisit painful experiences while helping staff learn. This raised questions about preparation, boundaries, ongoing support and the responsibility organisations hold towards contributors.

Olivia acknowledged that this needed further consideration beyond the relationships and informal support already in place.

Research Presentation: Discovering Livability

Presenter: Nakkita de silva from the Discovering Livability project

Our next presentation introduced Discovering Livability, a research project exploring alternative ways of thinking about suicide prevention.

The presentation invited us to consider what makes life liveable for people and communities, alongside understanding distress and responding to crisis.

This opened up questions about relationships, belonging, culture, inequality and the social conditions shaping people’s lives.

Community, Creativity and Lived Experience

The Nakkita described an interest in grassroots and peer-led organisations supporting young people, including approaches involving art and music.

The project also considers activism, policy and the role of lived and living experience.

There was recognition that involving people in research requires care. Participation should respect boundaries and avoid placing pressure on people to disclose distressing experiences.

Questions and Discussion: Transitions and Joined-Up Support

Members discussed gaps in support during the transition from childhood to adulthood, particularly for people with disabilities and neurodivergent people.

Contributors called for services to understand the whole person, including connections between physical health, mental health, disability, culture and family circumstances.

These discussions also highlighted the demands placed on carers when services work separately and families are left to bridge the gaps.

Carer Discussion: What Support Is Actually Available?

One contribution brought the meeting back to a practical question: how do services find and support carers who are managing considerable responsibilities but are not closely connected to organisations?

The discussion highlighted uncertainty about what help is available and how a carer’s assessment translates into practical benefits.

For me, this was an important reminder that conversations about frameworks and service development must remain connected to carers’ daily lives. People need clear explanations, accessible routes to support and opportunities to ask questions without already knowing the system.

Making the Forum’s Influence Visible

A member suggested bringing organisations back together to explain what they had learned from the forum and what had happened afterwards.

This would help members see how their contributions influence work beyond the meeting itself. It is a valuable suggestion to consider as the forum develops.

Closing Reflections

Thank you to our presenters and everyone who contributed to September’s forum.

The meeting offered examples of community involvement alongside honest challenges about trust, resources and accountability.

As a carer, I want these conversations to help build services where families are believed, cultural differences are understood and involvement leads to improvements people can recognise in their everyday lives.

Supporting someone with psychosis? Share your experience through the OSMOSIS study

Welcome to another update from A Caring Mind. I am sharing a research opportunity for unpaid carers who support someone with psychosis and live in Hackney, Tower Hamlets or East Sussex.

As someone with lived experience of caring, I know how much attention can focus on the person receiving care, while the support needs of family members and friends remain less visible. Listening to carers can help us understand what happens when we reach out for support ourselves.

The OSMOSIS project is exploring carers’ experiences of support to inform the development of resources and actions to support carers.

Whose voices are needed?

The research team would particularly welcome interest from carers from minoritised communities, who are currently underrepresented in the study.

This matters to me because carers’ experiences can differ across communities. Creating opportunities for people to share those experiences can help bring overlooked needs and barriers into view.

The study is only recruiting carers who live in Hackney, Tower Hamlets or East Sussex. Within these areas, the team would like to hear from people who meet all the criteria below.

Who can take part?

You may be eligible if you:

Provide unpaid support for a family member or friend with psychosis.
Are aged 18 or over.
Live in Hackney, Tower Hamlets or East Sussex.
Have tried to seek out, or have received, support for yourself.

You do not have to use the word “carer” to describe yourself. You might simply see yourself as a brother, sister, parent, partner, relative or friend who provides unpaid support.

What does taking part involve?

Taking part involves a 90-minute interview, either online through Microsoft Teams, over the phone or in person, depending on your preference.

Participants will receive a £20 voucher of their choice.

The study flyer states that your information will be kept private and you will not be identified in any outputs.

How to find out more

If you are interested in participating, or would like to ask questions before deciding, please contact:

Dr Evelyn Callahan
Email: evelyn.callahan@citystgeorges.ac.uk
Phone: 07341 492068

The study flyer accompanies this post with further details.

Please share this opportunity with eligible carers and local networks in Hackney, Tower Hamlets and East Sussex, particularly networks reaching carers from minoritised communities.

Carers’ experiences deserve to be heard—including our experiences of seeking support for ourselves.

Tackling Mental Health Inequalities Together: An Evening with Kent and Medway

By Matthew McKenzie – Chair of Ethnic MH Carer forum

On Thursday 15 October 2026, I attended an evening event hosted by Kent and Medway Mental Health NHS Trust, bringing together staff, community representatives, faith voices and people with lived experience to discuss racial inequalities in mental health care, although I attended as Chair of the National ethnic mental health carer forum, It was also lovely to be joined by Beata Bikowska and Tina Stevens from Cygnet Hospital Maidstone, alongside NHS colleagues and community partners, for this important conversation on tackling mental health inequalities.

The evening launched the Mental Health Act and Restrictive Practice (MHARP) project, which is exploring ethnic inequalities in Mental Health Act detentions and restrictive practices across Kent and Medway.

As a Black mental health carer and carer activist, these conversations matter deeply to me. Behind every discussion about detention, restraint or seclusion are people, families and communities whose experiences deserve to be heard.

Beginning the work together

Shannon Paine, Corporate Head of Nursing and Quality, and her colleague Jackie introduced the project and explained why this work was needed.

An important message ran through the evening: this was the beginning of shared work. The Trust was inviting people to help understand the problems and shape what should happen next.

We also had Kamila Lobuzinska, the Trust’s PCREF Lead and Patient Equity and Health Inequalities Lead, whose work supports the wider commitment to addressing racial inequalities and involving patients, carers and communities in shaping improvements.

Shannon’s invitation had explained that the project was in its analysis and engagement phase. Staff, service users, carers, communities and partner organisations were being asked to contribute their understanding of experiences, care pathways and the factors that may contribute to inequalities.

That approach matters. People affected by services need opportunities to influence decisions while those decisions are still being formed.

Being honest about inequalities

The presentations described how the Trust had reviewed its 2024–25 data and identified inequalities affecting Black patients in detention and restrictive practices, including restraint and seclusion.

There was a willingness to acknowledge difficult questions about bias, institutional racism and how services operate.

Recognising a gap in the data is an essential step. Understanding how people arrive at that point requires listening to their experiences: what happened before admission, whether support was available early enough, how concerns were understood and how people were treated when they sought help.

The speakers recognised that this could involve uncomfortable conversations. Those conversations are necessary if services are serious about change.

Bringing PCREF into practice

The evening also explored the Patient and Carer Race Equality Framework, known as PCREF.

The discussion focused on how care is experienced, how staff experience working within the organisation and whether those experiences differ for people from racialised communities.

There was an emphasis on openness, involvement and accountability. Communities should be able to hear what the organisation is learning, what action follows and whether that action is making a difference.

For me, this is where PCREF becomes meaningful: when it influences relationships, decisions and everyday care.

Community voices and earning trust

Some of the most powerful contributions came from community speakers.

We heard about loneliness, food insecurity, cultural misunderstanding and the work already taking place within communities to support people who may feel disconnected from formal services.

Florence challenged the description of communities as “hard to reach”. Her contribution highlighted the importance of understanding the barriers created by systems and recognising the places where people already feel safe and welcome.

Faith leaders, community organisations and trusted individuals often spend years building relationships. Their knowledge and contribution deserve recognition.

A strong message was that institutions need to earn trust through consistent action. Asking communities to engage carries a responsibility to listen, respond and maintain those relationships beyond a single event.

Remembering families and unpaid carers

As an unpaid carer, I listened with families firmly in mind.

When someone experiences a mental health crisis, detention or restrictive intervention, the effects can reach across the family. Carers may be frightened, exhausted and uncertain about what is happening to someone they love.

For Black families and other racialised communities, those experiences can also sit alongside previous encounters with discrimination, cultural misunderstanding or exclusion.

My reflection is that carers must remain visible throughout this project. Families can offer valuable knowledge about a person’s communication, culture, faith, support networks and early signs of distress. Carers also need information, support and opportunities to raise concerns themselves.

This connects closely with my work around the Triangle of Care: building stronger relationships between the person receiving care, their unpaid carer and professionals.

Carer inclusion needs to be culturally responsive, with space to understand each family’s circumstances.

Creating opportunities to stay involved

Hayley, the Trust’s Community Engagement and Involvement Lead, introduced the co-creation community and encouraged people to remain connected.

This offers opportunities to receive updates, share ideas and experiences, and become involved in work to improve services.

Around the room were displays about involvement, recovery and wellbeing. The “Voices for change” materials reflected the evening’s wider purpose: creating opportunities for people to help shape services.

Attendees were also invited to suggest a hashtag for the project through Slido, giving those present a role in shaping how the work would be communicated.

Making room for connection

The evening included food, networking and opportunities to speak with people around the room.

These informal conversations are valuable. They allow people to ask questions, discover shared interests and begin relationships that can support future collaboration.

My photographs capture those moments alongside the presentations: people meeting at information stands, sharing conversations and coming together for a group photograph.

Looking towards what happens next

I welcomed the opportunity to attend and hear the Trust acknowledge the inequalities it wants to address.

The next stage will be important: maintaining community involvement, agreeing actions together and showing how people’s contributions influence the work.

For me, meaningful progress will include service users and carers being able to recognise improvements in their own experiences of care.

Thank you to Shannon, Jackie, Hayley, the wider Kent and Medway team and everyone who contributed their experiences and ideas. I look forward to seeing how this shared work develops.

Making carers visible: World Mental Health Day at King’s College Hospital

By Matthew McKenzie – Carers UK Ambassador, chair of South London Carers Forum

On Thursday 15 October 2026, I attended the World Mental Health Day Fair at King’s College Hospital in Denmark Hill. Organised by the hospital’s Vulnerabilities Team, the event brought together organisations sharing information about mental health, wellbeing, recovery and community support.

I was there as a Carers UK Ambassador and facilitator of the South London Mental Health Carers Forum. For me, attending these events comes from personal experience. Having cared for my late mother, who lived with schizophrenia, I know how much responsibility families can carry, and how easily their own needs can go unnoticed.

My reason for being there was simple: when we talk about mental health, unpaid carers must be part of that conversation.

Sharing a stall and raising carer awareness

I shared my stall with Swabra Abdulrehman from Southwark Council, who is working on carer awareness and promoting the borough’s upcoming All-Age Carers Forum.

It was a valuable opportunity to bring community carer involvement and local authority information together. Our shared space included Carers UK resources, information about the South London Mental Health Carers Forum and Southwark’s work with unpaid carers.

The screen also displayed our organisations and forum information. Seeing carers represented so visibly within an acute hospital mattered to me. Many people enter hospital thinking of themselves simply as a partner, son, daughter, sibling or friend. They may be providing substantial support without recognising that they are also an unpaid carer.

A stall can offer a starting point: somewhere to pick up information, recognise your own situation and discover that support exists.

Through the South London Mental Health Carers Forum, I aim to provide opportunities for carers to share experiences, hear from services and raise concerns. Peer connection matters because caring can become isolating, particularly when the person you support is struggling and you are trying to hold everything together.

Southwark’s upcoming All-Age Carers Forum

Swabra was promoting Southwark’s All-Age Carers Rights Day Forum, taking place on Thursday 19 November at the Harriet Hardy Community Centre.

The planned event will bring unpaid carers together with local services and partner organisations. Activities include wellbeing support, a nutrition session with Esther Agyeman, a manual handling demonstration and opportunities to speak with Occupational Therapy and Physiotherapy staff.

I welcome opportunities where carers can access practical information while also having space to connect with one another. Awareness needs to lead somewhere useful, whether that means finding support, understanding available services or having a concern heard.

A range of support under one roof

Looking around the fair, the range of stalls and information showed how many different routes there can be into mental health support.

South East London Mind had a presence, with materials covering peer support and support after suicide bereavement. Peer support has particular meaning from a lived experience perspective: being alongside someone who understands can make it easier to speak openly.

Carers’ Hub Lambeth displayed information for unpaid carers, including resources for people affected by a family member’s drinking or drug use. This was an important reminder that caring takes many forms, and some caring situations remain especially difficult to discuss because of stigma.

There were also materials from The Listening Place, alongside suicide prevention information from Body & Soul. Their presence brought attention to distress that may remain hidden, and the importance of making room for difficult conversations.

For carers, this can be a painful subject. Supporting someone through severe distress can bring fear, uncertainty and a constant sense of responsibility. Families need understanding and support around those experiences too.

Race, recovery and belonging

The Black Thrive materials particularly caught my attention, including its impact report and The Black Man’s Toolkit.

As a Black male carer and someone involved in work around racial equality in mental health, I feel strongly that awareness must include whose experiences are heard and whose needs are overlooked. Culture, racism and trust in services all belong within conversations about mental wellbeing.

Carer inclusion also needs that understanding. Families bring different experiences of services, and meaningful involvement requires people to feel respected and able to speak honestly.

Mosaic Clubhouse was another organisation represented in the materials, with information about recovery and community involvement. It prompted reflection on the importance of belonging, purpose and opportunities beyond clinical appointments.

Recovery takes place within everyday life. For both the person receiving support and those caring alongside them, relationships and community connections can make a considerable difference.

Young people, learning and care at home

The fair also included information from Redthread, whose banner highlighted youth work in hospitals and health settings, and Soluna, which promoted mental health support.

These materials drew attention to the importance of reaching younger people through different settings and approaches. Hospitals can be places where wider difficulties become visible, creating opportunities to connect people with support.

Other displays included Great Ormond Street Hospital’s Learning Academy, information about the START programme for carers of people with dementia, and Home Instead resources about care at home and dementia support.

There were also alcohol and drug awareness materials. Together, the displays reflected how mental health connects with family life, physical health, learning, ageing and the support available at home.

Creativity and lived experience

I was also pleased to see the artwork and information about SHARP Gallery.

My earlier correspondence with Anna-Maria Amato had introduced the King’s exhibition theme, The Sword in the Wave: Stories of clarity, courage and moving forward.

As someone who uses poetry and photography to explore unpaid caring, I value the place of creativity within health settings. Art can help express experiences that are difficult to explain in a meeting or capture on a form.

For carers, those experiences may include love, grief, exhaustion, pride and uncertainty, sometimes all at once. Creative work gives those feelings somewhere to be seen.

What I take away

Being at King’s reminded me why I continue taking carer information into hospitals and community spaces.

Behind a patient may be someone helping with appointments, managing uncertainty, noticing changes and worrying about what happens next. That person may also be tired, working, supporting other relatives or struggling with their own wellbeing.

Their presence should prompt a question: who is supporting the carer?

Thank you to Mollie Musgrove and the Vulnerabilities Team for organising the fair, to Swabra for sharing the stall, and to the organisations contributing their time and resources.

For me, marking World Mental Health Day means continuing to make space for lived experience, including the experiences of unpaid carers who are so often present, but still need to be seen.

Triangle of Care Community Meeting: October 2026 Update

By Matthew McKenzie – Triangle of Care Community Group Chair

Turning carer involvement into meaningful change

On Monday 12 October, I chaired the latest Triangle of Care Community Group meeting, bringing together unpaid carers, mental health professionals and partner organisations to share experiences and learning.

Our discussions explored what meaningful carer involvement looks like, developments within the Triangle of Care programme, and the support carers should be able to access. We heard encouraging examples of co-production, alongside honest accounts of gaps that continue to affect families.

For me, this is why the community group matters. It provides a space where carers can question, contribute and help shape the work.

Learning from Cumbria, Northumberland, Tyne and Wear

We welcomed Kerry Jackson, Involvement Facilitator at Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust, alongside carer contributor.

They introduced the trust’s Involvement Bank, which connects people with lived experience to opportunities to improve services. Contributors take part in staff training, recruitment, research, working groups, ward visits and the development of information for families.

A carer connected to the NHS Trust shared how his experience as a young carer had helped shape carer awareness training, including a dedicated focus on young carers. He also described returning to a ward where his partner had received care and using his experience to help staff understand the needs of families.

What stood out was the opportunity to turn difficult experiences into improvements for the next person coming through services. Having that contribution recognised can be deeply meaningful.

The presentation also showed the support needed to make involvement work: clear information about activities, preparation beforehand, feedback afterwards, recognition payments and flexibility around caring responsibilities. Contributors can choose their activities and take a break when needed.

Being involved from the beginning

One important discussion concerned the difference between co-production and being asked to approve something already completed.

The involved carer described why carers need to help develop resources from the beginning. If a leaflet has already been written and designed before carers see it, their ability to shape it is limited.

We also heard about the trust’s “Connect Sessions”, where carers and service users help review Triangle of Care self-assessments. This allows teams to consider whether their assessment of good practice matches people’s actual experiences.

Carers raised wider questions about influence. Are opportunities addressing the issues families want to change? Can involvement help tackle stigma and improve life for people with long-term serious mental illness?

These questions remind us to look beyond participation numbers and ask what difference involvement makes.

Triangle of Care programme updates

Mary shared an update on the programme, reporting that the Triangle of Care scheme now had more than 100 members across public, voluntary and independent sector services.

North London NHS Foundation Trust was welcomed as a new member. We also heard about recent star awards, forthcoming assessment panels and the annual reporting process.

Annual reports give providers an opportunity to demonstrate progress, identify challenges and receive feedback on areas requiring further work.

For carers, the central question remains how that work improves everyday experiences: being recognised, receiving information, having concerns heard and being included appropriately in care.

Keeping carers central to PCREF

The Patient and Carer Race Equality Framework, or PCREF, was another important part of the update.

Mary explained how the Triangle of Care pilot is strengthening attention to the carer element of the framework. Its first phase reviewed the standards and criteria with carers and professionals. The second phase is testing revised guidance and self-assessment materials with participating providers.

Examples shared included work at Mersey Care to understand who accesses carer support, and work at West London to help staff have more culturally sensitive conversations with families.

There are still challenges in collecting and using carer information, including ethnicity data. Conversations about this need trust, clarity and sensitivity.

The messages highlight the importance of listening to young carers, addressing inequalities and recognising each carer as an individual. For me, the emphasis on accountability is particularly important: listening to carers must lead to action, with families able to see how their contributions help improve services.

As someone involved in both PCREF and carer engagement, I welcome this work. Families need opportunities to explain their experiences, cultural needs and concerns without assumptions being made about them.

The meeting heard that the pilot is due to finish in June 2027, with final guidance and a revised self-assessment framework planned for autumn 2027.

Recognising young carers

Young carers remained a clear priority throughout the meeting.

The carer Contributor involved at the NHS Trust contribution demonstrated how easily young people’s responsibilities can be overlooked. Mary also highlighted work to strengthen recognition of children affected by a parent’s serious mental illness.

We heard about young carer videos developed through early intervention work at Tees, Esk and Wear Valleys NHS Foundation Trust, alongside encouragement for members to support Young Carers Action Day and the Young Carers Covenant.

A whole-family approach means asking who else is affected, including children and young people whose needs may otherwise remain unseen.

Standard 6: Can carers access the support they need?

Our breakout discussions focused on Standard 6, which concerns the range of carer support services available.

Examples shared during the meeting included direct referral arrangements, peer support, partnerships with carer centres, recovery colleges and family interventions.

A particularly useful question was whether services know what happens after a referral. Giving someone a telephone number does not tell us whether they received support.

Participants discussed the value of better information between trusts and carer organisations, so services can understand whether referrals lead to help.

In my group, carers raised concerns about the availability of specialist mental health carer support, access to assessments and the need for follow-up. One participant described difficulties associated with telephone assessments in their area. Others wanted clearer information about the current Standard 6 criteria.

These were carers’ reported experiences, and they showed why local feedback is essential. An assessment needs to lead to practical support and review. Carers also need to understand who is responsible for helping them and what they can expect.

Across the groups, peer support was recognised as a valuable source of understanding and connection.

An opportunity for carer leadership

The meeting also included an invitation for a carer to express interest in becoming Deputy Chair of the community group.

Carers Trust explained that a role description and expression-of-interest form would be circulated to the mailing list.

I have valued the support I have received as Chair. This role offers an opportunity to help guide discussions, connect experiences and bring carers’ concerns into wider conversations about improvement.

I would encourage interested carers to consider the opportunity.

Looking ahead

Thank you to Kerry and the Carer Contributor for sharing their work, also thanks Mary and Nada for supporting the meeting, and to everyone who contributed.

The discussions showed both the possibilities of meaningful involvement and the work still needed to make support accessible. Carers need to see how their contributions influence decisions and improve experiences for families.

The next Triangle of Care Community Group meeting is scheduled for Monday 11 January 2027, from 10:00 am to 11:30 am.

For information about joining the group, contact triangleofcare@carers.org.

Finding our voices through poetry with Imago carers

On Tuesday 13 October 2026, I facilitated a carers’ poetry session at Ignition Brewery in Lewisham, supported by Imago. We explored our surroundings, shared thoughts about poetry, and used drawings to express feelings through words. What mattered to me was giving carers space to create and hear one another.

I began by sharing how writing became part of my own caring journey. As a former carer for my mother, who lived with schizophrenia, and an ongoing carer for my two non-verbal autistic brothers, I know how difficult it can be to explain what caring involves. Writing books helped me raise awareness, while poetry gave me another way to communicate experiences and emotions in a few lines.

I reminded everyone that no poetry experience was needed. Poems did not have to rhyme, and sharing was optional. I wanted this to be a carers’ peer support space, with poetry helping us connect.

Noticing the world around us

Our first exercise invited everyone to look around the brewery or step outside and notice what they could see, hear and feel. From those observations, they were encouraged to write six to twelve lines.

The rainy Tuesday morning provided plenty of inspiration. Poems captured umbrellas, passing traffic, autumn leaves and people going about their day. Others noticed the welcome inside the brewery, familiar faces, a cup of tea, and even the sound of the projector.

It was interesting to hear how differently people experienced the same surroundings. A busy street could suggest movement and energy, but also loneliness. The weather could feel dreary, while life continued around us.

As carers, we can spend so much time doing things and responding to other people’s needs. This exercise offered a moment to pause and notice where we were. When poems were shared, I asked the group what stood out. Listening and offering encouragement became part of the activity.

Here are two poems from our observation exercise, capturing the same morning through different eyes.

Serena’s poem about the Tuesday morning

Rushing, waiting, beeping, honking,
Tuesday morning’s rush hour is well on the way.
People walking, shopping, gazing,
Umbrellas up on the go.
The sky is grey,
The rain drizzles upon the pavement,
Yet the air is still warm,
No shivering or quivering of lips in sight.
The trees sway with the breeze,
Autumn season turning the leaves,
Yellow, brown and shades of grey.

Sybil’s poem about life continuing in the rain

The sky is dull and dreary and rain falling,
But people still going about their business.
Some people going to work and some are shopping.
No matter the weather, life still goes on.
The buses still run their schedules,
The shops still open, tantalising everyone.
Indoors, we go to the carers’ home,
Writing poetry, everyone having a try.
God knows what we will come up with,
But it is good to exercise our brain.
Everyone will have a laugh to the end of the day.

What does poetry mean to us?

We then discussed what a poem is and what it means to each of us. Some described self-expression, personal thoughts or a way to put unspoken feelings onto paper. Others were still discovering their relationship with poetry.

The conversation brought in childhood memories, Scottish ballads, Louise Bennett’s Jamaican poetry and the work of Benjamin Zephaniah. We explored how poetry can carry a serious message as well as entertain. Participants also reflected on writing as a way to find comfort or work through questions.

This mattered to me because carers bring their own histories, cultures and ways of expressing themselves. Making room for those differences helps everyone contribute.

Turning feelings into pictures and poems

For our next exercise, participants drew something representing how they felt, gave it a title, identified three details, and used those observations to write a short poem.

This was more challenging, so we took time to offer prompts and encouragement. Faith and Nadine also helped others take part. A simple shape, a colour or a few lines could provide a starting point.

The resulting work covered a wide range of subjects: light amid chaos, sunflowers, confusion, a mango tree, recycling, family time, love and the wish for a brighter life. People showed their pictures and read their words, with support available for those who felt shy.

Seeing these drawings alongside the poems added another dimension to the session. Each person had found something different to communicate.

These two pieces from the drawing exercise show how colour and images opened up reflections on faith, hope and happiness.

Light Amidst the Chaos

So I’m feeling lots of things at this moment.
Matthew gave me these colours,
The colours that you see in the picture.
The picture made me wonder how vulnerable I want to be today.
I wasn’t really sure.
When I look at the picture, I feel as though life is a whirlwind.
There’s always so much to do.
But there’s a light peeping out in the corner.
And I know that he is guiding me,
Strengthening me and holding me.
I know that I will be okay
Despite the chaos of this season.

Be Yourself

I enter to find happiness.
As the sunflower points upward to the sky,
My heart soars upward in happiness.
As I ponder on God’s masterpiece of creation,
I see the brilliant yellow colours of the petals
That reminds me of the sun shining,
That brings happiness to everyone,
Everyone, everyone around.

Poems reproduced from the session transcript, with light punctuation edits and line breaks.

Thank you to Imago and everyone who joined us

There was laughter, thoughtful conversation and plenty of encouragement throughout the morning. I asked participants to keep their work so they could return to it and reflect on what they had created.

Thank you to Imago for making space for a carer-led session at Ignition Brewery, and to everyone who took part. For me, the value of the morning was hearing carers express themselves and seeing the group support each other as they did so.

World Mental Health Day 2026: Unpaid Carers Must Be Heard

By Matthew McKenzie – Carer Activist

For World Mental Health Day 2026, I have created a short campaign video reflecting on this year’s theme: “Lived experiences heard: real voices, real change.”

As someone who cared for my mother, who lived with schizophrenia, this message means a great deal to me. People living with mental ill health deserve to shape the care they receive. Alongside them, unpaid carers also bring experiences and knowledge that services need to hear.

Caring can involve supporting someone through appointments, noticing changes in their wellbeing, or helping them settle at home after hospital. It can also mean uncertainty, sleepless nights and struggling to find someone who will listen.

Yet how often does someone ask the carer, “How are you coping?”

In my video, I highlight the importance of supporting carers’ own mental health and hearing from Black and minority ethnic carers, whose experiences of racism, stigma and exclusion need recognition and action.

I also discuss the Triangle of Care, which strengthens the partnership between the person receiving care, their carer and mental health professionals. That partnership must respect the person’s wishes, privacy and dignity while recognising the carer’s contribution and support needs.

World Mental Health Day brings global attention to these issues through the World Federation for Mental Health and the World Health Organization. Organisations including the Mental Health Foundation, Rethink Mental Illness, Carers UK and Carers Trust also provide valuable information, advocacy and support.

My message is simple: listening should lead to meaningful involvement and visible change.

If you are an unpaid mental health carer, your experience matters. You deserve care too.

Watch my short video and please share it to help unpaid carers feel seen and heard.

Finding Our Voices: Ealing Carers Connect Through Poetry

By Matthew McKenzie, Carer poet and author supporting caring communities

On Thursday 8 October 2026, I returned to Ealing Central Library to lead a poetry workshop for unpaid carers with Ealing Carers Partnership. We explored the library, wrote poems and experimented with performance, making time for conversation and laughter along the way.

As a carer myself, I know how easily our own interests can slip into the background. This session gave participants space to express themselves and hear one another, without needing previous poetry experience.

Supporting carers in Ealing

Ealing Carers Partnership supports adult unpaid carers living and caring in the borough. Its work includes wellbeing activities, Carers Cafés and access to respite support, helping carers find time for themselves and connect with others. Creative workshops form part of that wider effort to recognise carers as people with their own needs and aspirations.

Ealing Central Library provided a fitting setting. Located within Ealing Broadway Centre, it offers books, free computer and internet access, and rooms for community activities. For our workshop, the library also became a source of inspiration, with its shelves, reading spaces and everyday encounters offering starting points for poetry.

Finding poetry around us

Our first exercise invited participants to notice an object, book title or detail within the library and write around six lines about it. The poem could describe what they saw, explore a memory or imagine what the object might say.

The responses showed how differently we can experience the same space. One participant stayed in the workshop room and wrote about its surroundings and the group’s return. Another found inspiration among books on mathematics and science. A mother reading with a child prompted a poem about attention, calm and shared moments.

One particularly striking response connected the shape of the shelves with the twists and turns of a personal journey. An everyday detail became a way to express something much deeper.

We listened and offered reflections on what stood out. This mattered because sharing a new poem can feel exposing. Thoughtful encouragement helped make room for different voices and approaches.

Bringing words to life

Next, we experimented with performance. Participants wrote short poems and read them aloud before trying a change in pace, volume or emotion.

A poem could become a whisper. Another could gain strength through a more confident delivery. A poem about running took on a quicker rhythm, while laughter became part of another performance.

Listeners noticed how posture, looking up and changes in voice affected their experience of the words. There was applause and humour, alongside moments of recognition.

I wanted us to make use of being together in person. Hearing a voice change, watching someone respond and sharing spontaneous laughter gave the exercise an energy that belonged to the room.

Writing together

We also worked collaboratively, taking turns to contribute lines and read them aloud.

One piece explored the pressures of a difficult day and the search for breathing space. Another used the sound, smell and taste of coffee to create a vivid shared scene. These different approaches reminded us that poetry can hold everyday pleasures as well as frustration and exhaustion.

The conversations between participants were part of the session’s value. Finding a theme together meant listening, making suggestions and discovering how another person’s words could connect with your own.

Expression and connection for unpaid carers

Unpaid caring can leave little time for friendship or creative interests. Even when surrounded by responsibilities and appointments, a carer can feel that their own experiences remain unheard.

Art and poetry offer another way to express those experiences. A feeling can take shape through an image, a rhythm, a drawing or a few handwritten lines. Someone who struggles to explain their day directly might find that a poem gives them a starting point.

For me, tackling isolation also means creating opportunities for carers to contribute. During this workshop, participants became writers, performers and attentive listeners. Their observations shaped the session, and their words gave others something to respond to.

A poetry workshop cannot remove the practical pressures of caring. It can, however, provide a welcome pause and a chance to feel heard. Shared creativity can open a conversation that might otherwise never happen.

Thank you to Ealing Carers Partnership, Ealing Central Library and everyone who took part. The session reminded me how much can emerge when carers have time, encouragement and space to bring their own voices into the room.

To find out about support and activities, visit Ealing Carers Partnership.