By Matthew McKenzie – Founder of A Caring Mind, unpaid carer, and advocate for ethnic minority carers
This October 2025, I had the privilege of joining Carers Support West Sussex to speak during their Black History Month celebrations under the theme “Standing Firm in Power and Pride.”
Carers Support West Sussex provides advice, emotional support, and practical help to unpaid carers across the county of West Sussex, ensuring they are recognised, valued, and empowered in their caring roles. Their work helps thousands of carers connect with the right information, resources, and community networks when it matters most.
As a Black, unpaid carer of lived experience, I spoke about Race, Inequality, and Carer Voices exploring how racism and structural inequality continue to shape the experiences of carers from ethnic minority backgrounds.
In a recent interview, Matthew McKenzie sat down with Hannah Codigan, a palliative care nurse who brings a unique perspective to healthcare, not only as a professional but also as someone with lived experience of serious mental illness. Together, they explored the importance of recognising unpaid carers and embedding lived experience voices in the design and delivery of healthcare services.
Caring Beyond the Patient
Hannah shared how her role in hospice care extends beyond patients to include families and carers who often struggle without recognition. She emphasised that carers need as much emotional and practical support as the people they care for, noting how time pressures in nursing can make it difficult to truly listen to their experiences.
By Matthew McKenzie – Mental Health Carer Activist
As a carer and mental health advocate, I often see how culture, identity, and lived experience shape the stories we tell and the way we support one another. Recently, I attended a remarkable Black History Month event hosted by Certitude, although I could not stay long, I left feeling inspired, proud, and deeply reflective about the intersections between culture, community, and care.
The Black History Month event was held at Bruce Kenrick House on the 16th of October 2025
About Certitude
Certitude is one of London’s leading social care providers, supporting people with learning disabilities, autism, and mental health needs to live fulfilled and independent lives. What makes Certitude special is its person-centred approach celebrating individuality, empowering self-expression, and ensuring that everyone, regardless of background, has the opportunity to thrive.
As someone who’s been advocating for carers for years through A Caring Mind, I know how important it is that carers’ experiences influence the way support systems are built. The OSMOSIS project offers a real chance to help improve understanding and services for those of us supporting loved ones with severe mental health conditions.
If you are caring for someone living with psychosis, schizophrenia, or bipolar disorder, here’s an opportunity to make your voice heard.
By Matthew McKenzie FRSA BEM, Chair, Triangle of Care Community Group
This week’s Triangle of Care Member Webinar, hosted by Carers Trust, which focused on a vital question: What makes for meaningful carer involvement?
We heard from across the Triangle of Care network, these being carers, professionals, and trust representatives coming together to share what genuine involvement looks like in practice.
I spoke about my own lived experience as a carer, supporting two non-verbal brothers with autism and my late mother with mental health challenges and how this journey has shaped my advocacy for stronger partnerships between carers and professionals.
Over the years, through the Triangle of Care, I’ve seen how much difference early and equal involvement can make.
Today I had the opportunity to be interviewed for the Specsavers Carers Hub, a platform that shares real stories, advice, and support for those who dedicate their lives to caring. It was a chance to reflect not only on my role as a carer but also on the deeper themes of healing, connection, and creativity that shape my journey.
Telling My Story
As someone with lived experience of caring for my mother and brothers, I know first-hand how demanding and emotional the role of an unpaid carer can be. I shared their story through my words and memories.
Speaking on camera about my caring role reminded me why visibility matters. Carers often go unseen, yet carer voices hold the power to inspire change, raise awareness, and remind others that they are not alone.
The Importance of Self-Healing
One of the most important parts of my journey has been recognising the need for self-care and self-healing. Carers often put the needs of others before their own, but to continue supporting loved ones, we must nurture our own wellbeing. Whether through reflection, community, or creative outlets, finding ways to heal is not selfish.
Connecting with Carers
During the interview, I spoke about the importance of connection. Meeting other carers, whether through groups, campaigns from Carers UK, or online spaces, brings a sense of solidarity. I wont say much about the interview, you will need to watch the video when it is released.
The Power of Poetry and Words
For me, poetry has always been a form of healing. Writing and performing allows me to give shape to emotions that are often hard to express. In the beginning of my caring journey, words were painful, but after a while words can be medicine they can validate, soothe, and inspire both writer and listener.
A Special Thanks to Specsavers
I couldn’t end without mentioning the role my Specsavers glasses played in my journey. Whether it’s writing late into the night, reading the works that inspire me, or standing up to perform poetry, my glasses have been an essential tool.
To check out previous carer stories, please viset the Specsavers Carers Hub below.
Post By Matthew McKenzie – National Cancer Carer forum
For people living with a serious mental illness (SMI) such as schizophrenia, bipolar disorder, or psychosis, cancer remains one of the leading causes of premature death. In South East London, lung cancer is particularly devastating, with mortality rates highest among this group.
But there’s good news: projects are now underway to change this. Click on poster for more details
Why this matters
Early detection can make all the difference in lung cancer outcomes. Yet too often, people with SMI face additional challenges in accessing screening, diagnosis, and treatment pathways. These barriers can delay care, reduce treatment effectiveness, and ultimately cost lives.
That’s why the South East London Cancer Alliance has partnered with the Woolwich Service Users Project (WSUP) to hear directly from service users about their experiences. The aim is simple but powerful: understand what stands in the way and build solutions that ensure fair and timely cancer care for everyone.
How you can get involved
If you:
Are over 18,
Have a diagnosed serious mental illness,
Have a history of smoking,
Live in South East London (Bexley, Bromley, Croydon, Greenwich, Lambeth, Lewisham, or Southwark),
then your voice could make a real difference.
You may have been referred for lung cancer screening, diagnosed with lung cancer, or spoken to your GP about persistent symptoms like a cough or shortness of breath. Whatever your experience, sharing it can help shape future services.
What to expect
Focus groups (online or in-person in Woolwich) lasting about 90 minutes.
A safe, supportive space to share your experiences with up to five other participants.
Reimbursement for your time (£20–£30 depending on the session) plus refreshments at in-person events.
Confidentiality and anonymity are guaranteed.
When and where
Focus groups will run September – October 2025.
Online via Microsoft Teams.
In person at Woolwich Service Users Project, 107 Brookhill Road, SE18 6BJ.
Deadline to register: 10th October 2025 (but get in touch even if you miss it—support is flexible).
Together we can change the story
Every voice matters. By sharing your experiences, you can help break down barriers to early lung cancer diagnosis and ensure better care for people with serious mental illness.
Because when it comes to cancer care, no one should be left behind.
Would you like me to make this blog more community-facing (warm, story-driven, with lived-experience language) or more professional-facing (for healthcare partners and stakeholders)?
Building Stronger Voices: A Powerful July Gathering of the National Ethnic Mental Health Carer Forum
On Friday, July 25th, the National Ethnic Mental Health Carer Forum held another online session, continuing our work in empowering diverse carers and influencing meaningful change across mental health services. With participation from community champions, NHS professionals, experienced unpaid minority carers. The discussion was on the Triangle of Care (ToC) and PCREF (Patient Carer Race Equality Framework) stakeholders.
This forum exists to elevate the voices of ethnically diverse carers, bringing their lived experiences to the forefront of service transformation. Whether it’s holding systems to account or shaping policy guidance, this space remains vital in creating inclusive, anti-racist care across the UK.
Highlights from July’s Forum
🔵 Debbie Hustings’ Presentation on Triangle of Care & PCREF Integration Debbie, a long-standing Triangle of Care Programme Lead and carer herself, gave an in-depth presentation on reviewing the Triangle of Care through a PCREF (Patient and Carer Race Equality Framework) lens. Her talk provided an honest look at institutional challenges and offered solutions for embedding racial equity into carer support standards. A key takeaway was how crucial lived experience is in driving real policy change not just warm words. She emphasized the importance of re-examining existing standards through a racial equity lens, stating that “beyond warm words,” carers need frameworks that are operational, measurable, and locally adaptable.
🟣 Powerful Feedback from Carers Contributors shared difficult yet necessary truths. Carers spoke about the lack of involvement in care planning, systemic racism, the need for meaningful co-production (not “faux-production”), and experiences of isolation when navigating majority environments. One carer reflected, “In 28 years of caring for my son, I have never been involved in his care planning.”
Several carers shared their painful, sometimes shocking, experiences navigating mental health services, especially in areas with limited diversity. One participant remarked, “Even after decades of caring, I’ve never been included in a care plan.” Others spoke of staff who misunderstood or dismissed cultural nuances, the misuse of confidentiality rules to exclude carers, and the silencing of Black and Asian voices. Concerns were also raised about immigration-related fears, lack of access for non-English speakers, and a troubling rise in racism in predominantly white areas. These reflections painted a vivid picture of systemic inequality but also made clear the power of collective advocacywhen carers come together, change begins.
These testimonies highlighted how far we still need to go.
🟡 Inclusive Language & Representation There was a passionate discussion around terminology whether to use “global majority” or “ethnically and racially diverse.” While some feared backlash from certain communities, the group leaned toward inclusivity and accountability over appeasement. This sensitivity around language underlines the forum’s thoughtful and intersectional approach.
🟢 The Work Ahead Debbie shared the next steps in developing Standard 2 of the Triangle of Care through the PCREF lens: staff training. The goal? Mandatory, culturally safe, anti-racist care awareness education co-produced with carers from diverse backgrounds. By April 2026, the guidance will be finalized, field-tested, and launched nationally.
A Forum of Global Carers, Local Action
This month’s session proved again that our forum is more than discussion as it’s a driving force for equity. Participants from Southampton, Lewisham, Pennine, Norfolk, Leicester, South West London, Kent & Medway and beyond all shared insights into their local efforts, including cultural awareness training, community storytelling projects, and carer-led involvement initiatives.
One key message? Change is possible when carers are part of the conversation—not as guests, but as co-leaders.
Want to Get Involved?
The forum is open to carers and professionals across the UK and beyond. We meet monthly online, and everyone is welcome to join, contribute, or simply listen.
For bookings or questions, contact me at info@caringmindblog.com 📱 Or download and scan the QR code in the flyer above
Together, minority mental health carers can shape a mental health system that sees, hears, and supports all carers—ethnically, culturally, and fully.
Next National MH carer forum in August 29th 10:30 am Matthew McKenzie Founder – Caring Mind Blog Facilitator – National Ethnic Mental Health Carer Forum
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.
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.
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.
Understanding the Hidden Struggles of Ethnic Minority Carers Caring for a loved one with mental illness can come with challenges, but for many ethnic minority carers, the journey is made more challenging by cultural stigma, language barriers, and a deep-rooted mistrust of formal health systems.
These carers often carry immense responsibility behind closed doors, with little recognition or support. Despite their dedication, many avoid reaching out to mental health services—not because they don’t care, but because past experiences have taught them to be cautious, even fearful.
What Is Institutional Distrust and Why Does It Matter? Institutional distrust refers to the lack of confidence in systems like healthcare, social care, or government services. For ethnic minority carers, this distrust is often grounded in real experiences of discrimination, cultural insensitivity, or the fear of losing control over a loved one’s care.
When services fail to understand or respect a carer’s background, the result is silence and isolation leaving carers to cope alone, without the help they may desperately need.
A Short Video Giving Voice to Unheard Stories To shed light on this important issue, I’ve created a short video presentation: “Institutional Distrust: Why Many Ethnic Carers Avoid Formal Services”
This video draws on the voices and lived experiences of unpaid carers, especially those from ethnic minority backgrounds. It explores the emotional weight they carry, the cultural barriers they navigate, and the urgent need for services to become more inclusive, respectful, and culturally aware.
Why Sharing These Stories Matters If we truly want to support carers from all backgrounds, we must first listen and really listen to what they’re telling us. By naming institutional distrust and understanding its roots, we can begin to rebuild trust and create spaces where carers feel safe to seek help.
Please watch and share the video, and let’s continue the conversation about what real support looks like for ethnic minority carers in mental health.
A Caring Mind 