Tag Archives: minority carers

Nothing About Us Without Us: A Poem on Carer Voice and Co-Production

By Matthew McKenzie – Carer

I feel Unpaid carers play a vital role in supporting loved ones experiencing mental health challenges. Much of this caring happens quietly in homes, during sleepless nights, through appointments, advocacy, and everyday acts of protection and support.

For many carers from minority communities, this experiences also includes navigating the cultural understanding, language differences, and systems that sometimes do not always recognise or reflect communities. Despite the knowledge carers hold, I feel our voices can sometimes feel overlooked in those decisions about care.

I recently wrote and recorded a short spoken word poem titled “Nothing About Us Without Us.” This poem reflects a simple and important message: carers bring lived experience that should be included in conversations about mental health services.

The poem is taken from the book I am developing called “Unpaid, Unseen and Yet Unbroken”

Carers are not just supporters in the background. Carers can carry knowledge shaped by lived reality by caring, advocating, and supporting our families through complex systems.

The poem also speaks to the importance of co-production. When carers, communities, and professionals work together, services can become more understanding and culturally responsive, and equitable.

I think this message is especially relevant to ongoing work around the Patient and Carer Race Equality Framework (PCREF), which encourages meaningful involvement of people with lived experience in shaping mental health services.

The poem is a small creative contribution to that conversation. It invites us to reflect on a few simple questions:

  • Are carers from different backgrounds being listened to?
  • Are those lived experiences shaping services?
  • Are decisions being made with carers, not about them?

Listening to carers is not just a gesture of inclusion it can lead to better understanding, stronger partnerships, and better care.

If you would like to watch the poem, you can find the video here:

I hope my poem encourages reflection and conversation about how we can continue building services with communities, and not just for them.

Involve Kent Carers’ Forum – 25th February 2026

By Matthew McKenzie

On 25th February 2026, I had the privilege of speaking at the Carers’ Forum hosted by Involve Kent.

Involve is a voluntary sector infrastructure organisation in Kent that supports unpaid carers by providing information, advice and practical help to make caring more manageable.

They organise regular carers’ forums and events where carers can meet each other, access specialist support services, hear from guest speakers on issues like benefits, legal rights and wellbeing, and contribute their lived experience to local planning and decision-making. Involve also connects carers with tailored resources, signposts to relevant services across health, social care and community sectors, and advocates for carers’ voices to be heard by policymakers and service providers

The forum ran from 10:30am to 1:30pm and brought together unpaid carers from across Kent to connect, learn and have their voices heard.

It was my second time speaking at this forum, and once again I was struck by something powerful: the room was full. That might sound simple, but in the world of unpaid caring which can often feel isolating and invisible a full room means solidarity. It means people are choosing, despite exhaustion and competing demands, to show up for themselves and each other.


Arriving and the atmosphere

From the moment I walked in, there was a real sense of warmth. Information stands lined the hall Involve, Citizens Advice, mental health services, energy advice, leisure services and more. Tables were covered in leaflets, conversations were already flowing, and carers were reconnecting with familiar faces.

The purpose of the forum was clear:

To enable those caring unpaid for an adult family member, partner or friend to meet, gain information about services in their community and have their voices heard .

That last part to have their voices heard is what resonated most with me.

It was also good to see Carer leads from Cygnet Maidstone engaging with carers in the community of Kent.


My talk: Caring for someone with a mental health diagnosis

I spoke about caring for someone with a mental health diagnosis and the Patient and Carer Race Equality Framework .

As many know, I cared for my mother who lived with schizophrenia, and I now support a close friend who lives with personality disorder and addiction challenges. I don’t speak as a clinician. I spoke as someone who has sat in GP waiting rooms, on inpatient wards, in crisis meetings, and at home during those “screaming silences” that carers know too well.

I shared:

  • The confusion I felt when I didn’t even realise I was a “carer”
  • The frustration of confidentiality barriers
  • The loneliness of not being listened to
  • The emotional exhaustion that comes from constantly firefighting crises

I then shared a poem to promote carers rights

But I also shared something equally important: growth, advocacy and solidarity.

I encouraged carers to:

  • Educate themselves about the condition they are supporting
  • Learn the difference between symptoms and personality
  • Understand triggers
  • Forgive themselves for mistakes
  • And most importantly, look after their own wellbeing

One message I always return to was – You cannot pour from an empty cup.

I also spoke about The Patient Carer Race Equality Framework

It exists because there is clear evidence of:

  • Disproportionate detentions under the Mental Health Act
  • Poorer outcomes for Black and minority ethnic patients
  • Higher levels of distrust between communities and services
  • Carers feeling unheard or excluded

I spoke about how minority carers can face:

  • Cultural misunderstandings
  • Language barriers
  • Stigma around mental health within communities
  • Fear of services due to past discrimination
  • A lack of culturally appropriate support

Discussion tables: Carers influencing change

After my talk, Clara from Involve led discussions feeding into Kent’s Health Needs Assessment for carers. Carers were asked:

  • How do you recognise when it’s time to ask for help?
  • What causes burnout?
  • What would a carer-friendly community look like?

These wete not token questions. Staff took notes (without identifying details) so carers’ lived experiences could directly inform local planning .

I moved around the room speaking with carers. Some were open and vocal. Others were quieter, but their listening was just as powerful. Not everyone wants to speak publicly and that’s okay. Being present is also participation too.


Power of Attorney – protecting your voice

Later in the morning, Glen Miles spoke about the Mental Capacity Act and Lasting Power of Attorney .

As carers, we often assume we will automatically be consulted in crises. The reality is different. Without legal authority, our ability to advocate can be limited.

One key takeaway:

  • Don’t delay in arranging Lasting Powers of Attorney.
  • If you want your voice – or your loved one’s voice – to be heard, formalise it.

For carers who have experienced being excluded from decisions, this was a particularly important session.


Citizens Advice & practical support

Ian from Citizens Advice spoke before lunch about benefits, debt, housing and confidential support .

With the cost of living crisis, carers are under immense financial pressure. Many reduce employment hours or leave work entirely. The session was a reminder that:

  • Advice is free
  • It is confidential
  • You can attend anonymously
  • You are not judged

Lunch followed – catered by Fusion – and honestly, some of the most meaningful conversations happen over sandwiches. Carers swapping stories. Sharing phone numbers. Recommending services. That peer-to-peer support is priceless.


What stayed with me

What stayed with me most wasn’t just the agenda or the presentations.

It was:

  • The older carer quietly nodding as I spoke about emotional exhaustion.
  • The new carer asking, “Is it normal to feel this angry sometimes?”
  • The male carers who stayed behind to speak to me privately.
  • The carers from minority backgrounds who spoke about cultural barriers and stigma.

These forums matter because carers matter.

Unpaid carers save the system billions. But beyond economics, we hold families together. We absorb crises. We advocate in rooms where we’re not always welcomed.

Involve Kent (Carers’ Support – West Kent)

Address:
30 Turkey Court, Turkey Mill, Ashford Road, Maidstone, Kent, ME14 5PP

Telephone: 03000 810 005
General email: hello@involvekent.org.uk
Carers support contact: communitynavigation@involvekent.org.uk
Website: http://www.involvekent.org.uk

Poetry Submissions for Minority Carers in Mental Health Care: Share Your Voice

Matthew McKenzie FRSA BEM, poet and advocate for unpaid ethnic mental health carers, is inviting carers involved in NHS Trusts, PCREF (Patient and Carer Race Equality Framework), and Trust involvement registers to submit their poems for an upcoming 2026 poetry collection. This collection will spotlight minority carers’ voices and explore themes of race, culture, and lived experience in mental health care.

About the Poetry Collection

The collection will focus on amplifying minority carers’ experiences through poetry. It will be part of the paperback version of Matthew’s upcoming poetry book Unpaid, Unseen and Yet Unbroken and will include poems from carers all over the country. This is a unique opportunity for minority ethnic carers to have their voices heard and their stories shared on a national platform, contributing to the ongoing conversation about race equality, care, and mental health.

Why Should You Submit a Poem?

If you’re a minority carer or carers from underrepresented community, your voice matters. PCREF is committed to creating systemic change, and this collection will work alongside it to ensure that carers from minority communities are not left unheard. Submitting your poem gives you the chance to:

  • Raise awareness of the emotional, cultural, and psychological realities of being a carer.
  • Inspire others by sharing your lived experience.
  • Amplify minority voices within NHS Trusts, PCREF spaces, and mental health care systems.

Who Can Submit?

We welcome submissions from unpaid ethnic mental health carers who are:

  • Involved in NHS Trusts, PCREF, or trust involvement registers.
  • Attending ethnic mental health carer peer groups at carer centres
  • Interested in sharing their personal experiences and reflections through poetry.

How to Submit Your Poem:

  • Submit an original poem that reflects the emotional, cultural, and psychological realities of being an unpaid mental health carer.
  • Poems can focus on themes such as:
    • Emotional challenges of care
    • The hidden burden of caring
    • Resilience and survival
    • Navigating mental health services
    • Coping with racial and cultural barriers in care
    • Family dynamics in caregiving
  • Deadline for submissions is late April 2026.

Submission Guidelines:

  1. Format: Poems can be submitted in Word, PDF, or plain text format.
  2. Length: There is no strict length, but we recommend that submissions be no longer than 1 page.
  3. Multiple submissions: You can submit more than one poem if desired.
  4. Contact Information: Please include your full name, contact details along with your poem, so i can credit you. Unless you wish to be anonymous.

How to Submit:

You can also reach out to Matthew directly if you have any questions about the submission process or the collection.

What Happens After You Submit?

Once submissions are received, I will review all entries and select poems that align with the themes of the collection. All selected poets will be notified and credited in the final publication.

Need Inspiration or Support?

If you’re unsure where to start or need some encouragement, consider reflecting on your personal journey as a carer. Think about moments where language failed to express your experience or times when your strength surprised you. Your story is valuable, and this collection is about lifting up voices that have often been overlooked.


Contact Information:

For any questions or additional information, please contact Matthew McKenzie:


Submit Your Poem and Be Part of the Change

This is your chance to raise awareness and inspire others by sharing your lived experiences through poetry. Help shape a future where minority carers are valued, heard, and recognized for the essential work they do. We look forward to reading your stories!

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.

Triangle of Care Community Meeting: July 2025 update

On 21st of July 2025, carers, professionals, and stakeholders from across the UK gathered virtually for the latest Triangle of Care (ToC) Community Meeting. Chaired by Matthew McKenzie, this session was packed with insight, action points, and open dialogue. Whether you were new to the group or a long-time contributor, there was something valuable for everyone.

This meeting was particularly significant as it marked a turning point for carer participation. The formal recognition of the community group in ToC’s national governance structure. It affirmed that carer lived experience should not be sidelined, and that carers must continue to shape mental health services from the inside out.

If you weren’t able to attend, this blog will bring you up to speed. As the ToC community group covered a wide range of topics, from updates on national strategy and governance, to inclusive language, carer-led training, and advocacy for better research funding. At the heart of it all was a single message: when carers unite, systems must listen.

Official Recognition and Governance Progress

We are delighted to announce that the Triangle of Care Community Group is now formally integrated into the Triangle of Care governance structure. This gives the group a direct route to influence national decisions. The community will now sit alongside steering and regional groups in shaping policy, reviewing practices, and helping determine what carer inclusion should look like across all participating trusts.

What this means practically is improved alignment and visibility. For years, many carers and grassroots contributors have worked tirelessly behind the scenes, often without formal platforms. This change allows community voices to be heard before decisions are made not just consulted afterwards. Matthew described this shift as “a recognition of the years of unpaid care, leadership, and advocacy carers have always provided.”

It also means that our meetings will align with national timelines and decisions, ensuring a timely flow of updates between local groups, regional networks, and national forums. This is a pivotal opportunity to embed carers more meaningfully into NHS structures and accountability.

New Mailing List & Sign-Up System

Mary Patel from Carers Trust announced the launch of a new centralised mailing list for Triangle of Care community members. This will make sure everyone receives meeting invites, resources, and updates reliably. Participants will soon be asked to complete a Microsoft sign-up form, which will securely transfer contact details onto the Carers Trust system for ongoing communications.

The form will include a few demographic questions to help build a picture of the diversity within the ToC community. These questions are entirely optional but are designed to help Carers Trust identify who is engaging, and where gaps might exist—ensuring outreach strategies reflect real needs. For example, better regional balance, or increased visibility for underrepresented carer groups.

There was also discussion about moving from Zoom to Microsoft Teams for future meetings. Teams offers benefits like attendance tracking, secure file sharing, and easier scheduling. However, this won’t be a forced change, Matthew and Mary invited feedback, emphasising that any transition would be made collaboratively with community input.

Stronger Carer Involvement

Carer involvement was at the heart of the meeting. Matthew shared a passionate update on the need for carers particularly those from minority backgrounds or marginalised communities to step forward and engage in all aspects of the Triangle of Care. This includes involvement in peer reviews, shaping surveys, and suggesting new training or webinar content that reflects their lived experience.

The community was reminded that leading change doesn’t require a title or formal position. Sharing your story, participating in surveys, or simply raising your hand during a meeting is a form of leadership. Matthew emphasised that carers hold the kind of insight that no policy or textbook can replicate. As he put it, “This community is only as strong as the carers who show up.”

Peer reviewing was especially encouraged. Carers can play a vital role in reviewing mental health trust practices and making sure those trusts aren’t just ticking boxes but are genuinely improving the carer experience. Anyone interested in joining these review panels was invited to contact Mary Patel directly. The experience is meaningful and empowering and it places carers right where they should be: in positions of influence.

CQC Expectations and Carer Experiences

A powerful part of the meeting focused on the role of the Care Quality Commission (CQC) and how effectively it monitors carer inclusion in mental health services. Several carers and professionals shared their experiences some positive, others deeply concerning about how the CQC engages (or fails to engage) with carers during inspections.

A senior experience lead from an acute trust, explained that when CQC inspectors review services, they typically look for a clear carers policy, systems for identifying and supporting carers, and evidence of staff training. However, the level of scrutiny and the quality of carer-related feedback can vary significantly between inspections. The experience lead noted that while policy is important, it’s the systems around those policies that really matter, things like whether staff actually follow them, and whether carers know where to go for help.

Carers in the meeting shared contrasting experiences. A carer described a disappointing CQC visit where the inspector seemed dismissive, rushed, and uninformed about carers’ rights. Her feedback about lack of communication and exclusion was barely acknowledged, leaving her feeling invalidated. In contrast, Another carer spoke of a more recent inspection where the CQC officer seemed empathetic, asked thoughtful questions, and even disclosed their own possible caring experience. These differing accounts highlighted a common theme: carers’ confidence in the CQC is mixed, and their approach to carers can sometimes feel inconsistent.

There was strong consensus that CQC needs better training in carer engagement and not just understanding legal frameworks like the Care Act 2014, but also how to meaningfully include carers in service reviews. Kelvin added that cultural competence should also be part of the equation, noting that carers from minority backgrounds are too often left out of consultations. Matthew urged carers not to wait for trusts to invite them to speak during inspections ask to be involved, request to meet inspectors, and use carers’ councils or governors to raise visibility. It was clear from this session that carers want the CQC to be more than a compliance body, they want it to be a true advocate for accountability and equity in care.

Confidentiality Roadshow by Donna Bradford

A standout session was led by Donna Bradford, who presented her team’s work on the Confidentiality Roadshow a training programme developed by Lincolnshire Partnership NHS Foundation Trust. Designed to upskill staff on consent, confidentiality, and communication, the roadshow is tailored around carer inclusion and co-produced with the Carers Council.

The training helps staff understand not only what they can share legally, but also how to navigate nuanced emotional and ethical situations with carers. Donna reminded attendees that sharing basic, non-confidential information, such as medication side effects, is not only lawful but essential. “If you can Google it, you can say it,” she noted, driving home the importance of clarity over confusion.

Over 550 staff have already received the training, with 100% reporting that it improved their confidence. The programme includes real-life carer scenarios, emotional video testimonials, and interactive quizzes to help reinforce learning.

Beyond the training content itself, what makes the Confidentiality Roadshow so impactful is its co-production with carers. Donna highlighted that every scenario used in the sessions came from real-life examples shared by carers and families. This ensures the training isn’t theoretical so it’s grounded in lived experience. The emotional and practical realities of caring for someone with mental health needs are at the heart of the learning, helping staff understand why clear, compassionate communication is so essential. The training also underscores the importance of listening to carers, not just as bystanders but as active contributors to a person’s care journey.

Several attendees raised the idea of incorporating this training into broader staff induction and continuing professional development programmes. Others asked about adapting it for use in different trust settings, such as acute hospitals or community services. Donna encouraged trusts to reach out if they’d like to adopt or customise the resource. The message was clear: confidentiality shouldn’t be a barrier, it should be a bridge, and with the right training and tools, staff can navigate those conversations with confidence, legality, and humanity.

Mental Health Research Petition

Irene Harris spoke passionately about a new parliamentary petition calling for improved research funding into serious mental illnesses (SMIs) like psychosis. The petition aims to shine a spotlight on how outdated treatments and under-researched conditions continue to place carers and their loved ones in difficult, often heartbreaking positions.

Here is the video about Psychosis medication and its impact by the Stockport carers forum.

She shared how mental health medications for SMIs haven’t evolved as rapidly as physical health treatments, and how this results in long-term side effects and compromised quality of life. Research is desperately needed, not only to improve diagnosis and treatment, but also to create support structures that ease the burden on unpaid carers.

Irene asked attendees to sign and circulate the petition widely, with a goal of hitting 10,000 signatures by November 15th.

https://petition.parliament.uk/petitions/725846

She also announced plans to launch new social media channels to raise awareness. This initiative is about more than funding it’s about giving carers and service users a louder voice in national healthcare priorities.

For more details feel free to visit https://www.mhcarersgroupstockport.co.uk

or contact Irene on irene@mhcarersgroupstockport.co.uk

Language, Inclusivity, PCREF & the ‘Global Majority’ Debate

Language and inclusivity were major themes of the meeting, particularly around the term “global majority.” Some attendees expressed concern that the phrase could be divisive or misinterpreted, particularly by politically sensitive audiences or media outlets. A carer shared a personal anecdote illustrating how words can carry unintended consequences.

Others responded by highlighting the intention behind the term to emphasise that those historically described as “minorities” are, in fact, the global majority in population terms. They called for continued use of the phrase in contexts that promote empowerment, equity, and lived experience.

The discussion didn’t produce a consensus, but it modelled what respectful disagreement and co-learning should look like. Matthew reinforced that ToC should be a space for constructive dialogue, not debate for its own sake. Ultimately, we are united in our aim to ensure no carer is left behind regardless of background, heritage, or identity.

Next Steps & Community Actions

The session wrapped up with a summary of action points and responsibilities. Carers Trust will soon circulate the new mailing list sign-up form. Matthew will share updated meeting dates for 2026 once confirmed, and he will continue to distribute posters for the upcoming National Ethnic Carers Group, taking place on the last Friday of each month.

There will be support the rollout of the Confidentiality Roadshow materials and follow up with those interested in joining peer review panels. A reminder was issued for everyone to contribute to current surveys, share their feedback, and suggest future topics for community meetings.

Finally, participants were encouraged to stay connected beyond the meetings. Whether through peer networks, local carers centres, or email updates, the message was clear: carers must stay visible, vocal, and valued. You are the change-makers, and this group is your platform.

Final Thoughts: “Carers Are Not Just a Cog in the Wheel”

Matthew ended the session with a rallying call to action: “We’re not just a cog in the wheel as we are the energy behind it.” His words served as a reminder that carers are not passive recipients of services. They are drivers of quality, advocates for change, and protectors of dignity in the mental health system.

He also reminded everyone that systems often change slowly, but they do change when people keep showing up, keep speaking up, and keep sharing their truths. “This isn’t just about the Triangle of Care,” he said. “It’s about reshaping the whole narrative around mental health and care.”

If you missed the meeting and would like to receive the slides, recordings, or further resources, feel free to contact Matthew McKenzie directly:
📧 mmckenzie@carers.org

Thanks to to all who attended, contributed, and championed carers’ voices. The next meeting should in September where we hope to see you there.

Ethnic mental health Carer Forum Update March 2025

The Importance of Ethnic Minority Mental Health Carer Voices: Empowering Unpaid Carers from the Global Majority by Matthew McKenzie

In today’s world, the voices of ethnic minority carers in mental health services must be heard and valued. The National Ethnic Mental Health Carers Forum meeting, held on March 28, 2025, underscored the vital role that co-production and lived experience play in shaping better services for those who care for loved ones with mental health needs.

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Ethnic mental health Carer Forum Update February 2025

The National Ethnic Mental Health Carer Forum convened to discuss the ongoing challenges faced by minority carers in accessing mental health services. The meeting focused on strategies to improve cultural competence, equitable treatment, and accessibility within mental health care systems. A key topic was the Patient and Carer Race Equality Framework (PCREF), with organizations sharing their experiences and plans for implementation. Additionally, the discussion covered language barriers, education initiatives, and the role of co-production in fostering inclusive care.


Mental Health act research

Dr Judy, a researcher from the University of Bristol, discussed her ongoing project on the nearest relative provision in the Mental Health Act and the need for co-produced resources to support those in this role. She also mentioned the support from charitable organizations like Mind and Rethink.

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The importance of supporting Black and Asian carers

Welcome back to another blog post by carer activist Matthew McKenzie. I raise awareness of caring for someone with a long term illness.

This time I want to bring to attention something close to my lived experience of a carer. It is important in a multicultural society that we have health and social care for all. The health service cannot cater only for one specific need. The health system must reflect its community.

Carers from Black and Asian demographic tend to face their own unique challenges when supporting someone through the health system. Language problems, Biases, cultural misconceptions, alienation and even racism.

No one can now deny there is and always has been elements of discrimination through established health systems. Such predjudice has always been lurking behind the community and now due to the riots, it has raised its head. We now need to focus on unpaid carers from that background even more.

We must support our diverse community of carers, not because it is the right thing to do, but because it will benefit us all in the long run. It all starts with education and engagement. We need to all care about health and social care, because that how we change things.

Please check out my You Video below for more about minority carers