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.
by Matthew McKenzie – National Ethnic Mental Health Carer Forum Chair
In August, the online National Ethnic Mental Health Carer Forum came together once again to confront difficult but necessary conversations about systemic racism, discrimination, and the experiences of ethnic minority carers within health and social care. The forum, hosted by Matthew McKenzie, provided a platform for carers, professionals, and researchers to share insights, frustrations, and plans for change.
Focus on Racism and Discrimination
This month’s forum was unflinching in its focus: racism in health and mental health systems. Attendees shared powerful testimonies of racial abuse and discrimination, highlighting how these experiences undermine trust in services and affect both carers and those they support. There was a clear call for honesty – participants stressed the importance of naming racism directly, rather than disguising it behind euphemisms.
The group also discussed the overrepresentation of Black and brown people in prisons, the lack of tailored initiatives for older Black carers, and the persistent inequalities faced by ethnic minority families trying to navigate mental health and social care support.
Research and Evidence from Carers Trust
A key presentation came from Andrew of Carers Trust, who shared research into the barriers faced by Black, Asian, and minoritised ethnic carers. The findings highlighted widespread issues: discrimination, language barriers, lack of cultural competence, and difficulties in accessing benefits. Andrew emphasised the need for culturally inclusive services and stronger outreach strategies, while acknowledging feedback from the forum that research and advocacy must be explicit about racism rather than avoiding the term.
Andrew expanded on the importance of equity in benefit advice, pointing out that many carers miss out on their entitlements because information is inaccessible, overly complex, or not communicated in culturally relevant ways. He called for dedicated advice services that are not only multilingual but also sensitive to carers who may not self-identify as such.
He also spoke about the impact of social isolation on carers from ethnic minority backgrounds, who often have fewer support networks and face stigma within their own communities. Addressing this requires building trust with local organisations and ensuring carer support is visible in spaces where communities already gather, such as faith centres or community hubs.
Finally, Andrew outlined the Carers Trust’s national strategy, which involves working more closely with local carer organisations, producing research that amplifies marginalised voices, and lobbying for systemic reforms. He highlighted how this forum’s feedback directly shapes their advocacy, showing a real commitment to partnership.
Questions raised during Carers Trust’s presentation:
How can Carers Trust ensure its research explicitly names racism rather than using softer language?
What specific support can be offered to carers who do not self-identify as carers and miss out on benefits?
How can Carers Trust improve its complaints handling processes, particularly for carers facing racism and discrimination?
What role can MPs and lobbying groups play in supporting Carers Trust’s advocacy for ethnic minority carers?
How will Carers Trust ensure its multilingual materials are distributed widely enough to reach isolated communities?
Hampshire & Isle of Wight NHS Anti-Racism Initiatives
Usually NHS Mental Health trust representatives update on anti-racism initiatives at the forum. This time Hampshire and Isle of Wight engaged with minority carers.
Elton who is the Diversity and Inclusion Partner from Hampshire and Isle of Wight NHS Trust provided an update on their anti-racist programmes, including the rollout of the Patient and Carer Race Equality Framework (PCREF). The trust has begun implementing cultural competence training, engaging with local communities, and embedding anti-racism into its wider mental health services. While early in its journey, the trust is already seeing changes in communication and engagement across different wards and services.
Elton shared that the trust is actively developing training modules on implicit bias, with the aim of reaching every staff member across its services. This training is intended not as a one-off exercise but as part of a sustained culture change programme. Early feedback from staff has been encouraging, with more frontline workers recognising how unconscious bias can influence treatment decisions.
He also described the trust’s efforts to engage directly with service users and carers, ensuring that their lived experiences feed into decision-making. Listening events, surveys, and advisory panels are being used to capture diverse perspectives, with a particular focus on groups who historically felt excluded from consultation.
In addition, Elton emphasised the need for transparency and accountability. The trust will publish regular updates on its PCREF action plan, allowing communities and stakeholders to scrutinise progress. He acknowledged that this is just the beginning, but stressed that embedding anti-racism into healthcare systems requires openness, humility, and sustained commitment.
Participants raised questions about how these initiatives address specific groups, such as older Black carers and prisoners’ families, as well as concerns about public misconceptions of anti-racism work. Elton acknowledged these challenges and committed to following up with colleagues on gaps raised during the discussion.
Questions raised during NHS Trust’s presentation:
How will PCREF specifically address the needs of older Black adults who often feel invisible in services?
What is being done to support the mental health of prisoners (e.g. Albany and Parkhurst prisons) and their families within this anti-racist framework?
How will the trust prevent the public misconception that PCREF “excludes” white people?
What mechanisms are in place to ensure transparency and accountability in publishing progress updates?
How will the trust measure the long-term impact of cultural competence and implicit bias training?
Academic Research Contributions
The forum also heard from Shylet, a PhD researcher from University of Glasgow, who is focusing on learning disabilities. She presented her work on the lived experiences of Black African families caring for adults with learning disabilities, and invited participants to take part in interviews. Their contributions highlighted the importance of academic research in documenting and amplifying carers’ lived realities.
Another important theme was the financial challenges facing carers. The group discussed the complexity of benefits like Carer’s Allowance and how misinformation or fear of losing other entitlements often deters carers from claiming support. A carer expressed reluctance to claim due to concerns about how it might affect their relative’s benefits, while another highlighted the importance of valuing one’s own contribution and recognising caring work. There was frustration with bureaucratic systems that seem designed to exclude, particularly when layered with the additional barriers of language, culture, and discrimination.
Carers also highlighted the immense value of unpaid care, with estimates placing its worth at over £180 billion per year if it were to be paid for by the NHS. This figure underscored the urgent need for better recognition and support of carers’ contributions.
Strengthening Complaints and Accountability
There was a debate around how carers can raise complaints when faced with racism or poor treatment. Many participants expressed a lack of trust in formal systems like the CQC or Ombudsman, feeling that complaints disappear into bureaucracy without change. Suggestions included working with MPs, lobbying groups, or the media to ensure voices are heard.
Final Reflections
The August forum showed once again how necessary it is to hold these difficult conversations. Carers spoke bravely about racism and exclusion, professionals shared updates on anti-racist strategies, and researchers sought to bring lived experience into policy. Yet the message was clear: systemic change requires more than frameworks and research reports. It requires honesty, collaboration, and persistence.
As host, I was encouraged by the passion and determination in the room. The forum continues to grow as a national voice for ethnic minority carers, and our commitment to addressing racism head-on remains at the heart of this work.
By Matthew McKenzie (facilitator of National cancer carer forum) – Caring Mind
As someone passionate about involvement and health inequalities, I’m always eager to spotlight opportunities where diverse voices can drive real change. One such opportunity is currently open through a vital new research initiative led by Oxford Population Health and Cancer Research UK.
Why This Study Matters
Breast cancer affects thousands of women every year, but not all communities are impacted equally. The risks, experiences, and outcomes can vary significantly based on ethnicity – yet we still don’t have enough evidence explaining why.
This is why Oxford researchers are launching a new study to explore how breast cancer affects women from different ethnic backgrounds, particularly African, Caribbean, Indian, Pakistani, and White British communities.
The aim is simple but essential: to improve breast cancer care for all women by understanding how ethnicity influences diagnosis, treatment, and risk.
How You Can Get Involved
The team is inviting women with personal experience of breast cancer or even those who have a strong interest in the topic to join their Patient and Public Involvement (PPI) Group.
If selected, you’ll have the opportunity to:
Share your insights in online meetings that shape how the research is done.
Help communicate findings back to the community in a clear and accessible way.
Co-develop tools and resources that empower women from all backgrounds.
This is your chance to ensure the voices of underrepresented communities are heard in life-changing research.
Why Your Voice Is So Important
As someone who has spent years advocating for marginalised communities, I can’t stress this enough: Representation in research leads to better outcomes. If women from diverse ethnic backgrounds aren’t involved in shaping breast cancer studies, critical insights will be lost and the same inequalities will continue.
By joining the PPI group, you’re not just helping researchers you’re helping your community. Your lived experience, your culture, your understanding of the challenges women face all of that brings invaluable richness to the study.
Interested? Here’s How to Take Part
If you’re ready to help shape a more inclusive and impactful breast cancer study:
About the Forum: The Lewisham, Lambeth & Southwark Carers Forum is a collaborative online space that brings together unpaid carers, carer leads, mental health professionals, and support organizations to share experiences, raise concerns, and influence change. Focused primarily on mental health caregiving, the forum serves as a platform for peer support, policy updates, training insights, and service development. Led by carer advocate Matthew McKenzie, the group fosters empowerment through regular discussions, creative expression, and co-produced solutions, ensuring carers’ voices are heard across local systems and beyond.
Carers Week Collaboration Discussion
The meeting began with introductions from Matthew McKenzie, who leads a merged online carers group, and other participants including Yvonne, a carers navigator at Southwark Carers, and Margaret, a carer representative with the Royal College of Psychiatrists. The group discussed Carers Week activities and their various roles in supporting carers across different organizations. Karen Hooper, connected with the Lambeth Living Well Collaborative, while Lee Roach, the carers lead for South London & Maudsley in Lambeth, shared his involvement with the Trustwide Family and Carers Committee.
Written by: Matthew McKenzie – WLHT co-facilitator of ethnic carer group and Triangle of Care Community Chair
The Irish Cultural Centre in Hammersmith was filled with warmth and purpose on June 12th, as carers, professionals, and community leaders came together for the West London NHS Trust’s Carers Event in support of Carers Week 2025.
As Chair of the Triangle of Care Community and an involved carer for West London NHS Trust, I was interested in the carers conversations, and sense of solidarity among all those present.
On May 1st, 2025, Cygnet Health Care hosted its landmark Co-Production in Commissioning Conference at the iconic Villa Park, Birmingham. More than just a professional gathering, the event was a manifesto for a more inclusive, compassionate, and equitable model of care, driven by people with lived experience, carers, clinicians, and commissioners alike.
Packed with powerful keynotes, practical models, and heartfelt stories, the day was as emotionally resonant as it was strategically focused.
Understanding the Role of Empathy in Reducing Racism
Welcome to about blog and video lecture from carer advocate Matthew McKenzie. This time I want to promote the importance of how empathy serves as a powerful tool in addressing and reducing racism within society. To watch my video lecture on reducing racism, see the video below.
When it comes to reducing Racism, it requires individuals to step into another person’s shoes, acknowledging their lived experiences and how the impact of racial discrimination affects them.
On March 7, 2025, The Foundry in London became the epicenter of a powerful movement towards racial equity in healthcare.
The London Anti-Racism Collaboration for Health (LARCH), Health Innovation Network and Race Equality Foundation hosted their Annual Conference and Learning Event, bringing together thought leaders, policymakers, and community advocates dedicated to dismantling systemic racism in health and social care.
Setting the Stage: A Call for Change
The event was chaired by Dame Marie Gabriel, a pioneering advocate for equity in the NHS. Kicking off with opening remarks from Dr. Debbie Weekes-Bernard, Deputy Mayor for Communities & Social Justice, the conference established a clear message: structural racism in healthcare is a pressing issue that demands systemic solutions.
On February 25th, 2025, carers, professionals, and support organizations gathered at Tooley Street for a Carers event provided by Southwark Council. The event was developed by Sarah Bullman, Senior Policy and Strategy Lead for Adult Social Care over in Southwark. The event, hosted by Simon Rayner, provided an opportunity to connect, share updates, and explore ways to support carers in the community.
Key Highlights from the Event:
🔹 Carefree – Presented by Salil Meech Mazumdar, Carefree shared their work in providing much-needed short breaks and respite opportunities for unpaid carers, ensuring they have time to rest and recharge.
🔹 Southwark Carers – Sarah Bullman introduced Southwark Carers including Verinder CEO of Southwark Carers, an essential organization offering tailored advice, practical support, and advocacy for carers in the borough of Southwark.
🔹 Mobilise – A digital-first platform supporting carers, Mobilise was discussed in depth, highlighting how online peer support and coaching can help carers navigate their roles more effectively.
🔹 Imago – Known for their work in youth and adult carer services, Imago shared updates on their projects that focus on young carers, connecting them with resources and professional guidance.
🔹 Carers Hub/Centre – Southwark council focus on a new Carers Hub set for next year, where updates on focus groups and workshops on how the carers centre will be used for supporting unpaid carers.
The last section of the event was below
🔹 Voice of the Carer & Carer Empowerment – Chloe Harvey and Sarah Bullman provided updates on Southwark’s Carers Strategy, reinforcing the importance of carer voices in shaping policy.
Plus Matthew McKenzie, a well-known carer advocate, spoke passionately about listening to carers, empowering them, and ensuring co-production in decision-making. He also read moving excerpts from his book, The Poetry of Mental Health Caring, which resonated deeply with attendees.
The event concluded with a networking lunch, allowing attendees to connect, share experiences, and strengthen their collective efforts in supporting carers.
This forum was a powerful reminder that carers should never feel alone—there is a strong and growing community dedicated to uplifting and advocating for them. 💙
A Caring Mind 