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.
By Matthew McKenzie – Triangle of Care Community Chair.
The meeting opened with a welcome to carers, professionals, and partner organisations, reinforcing the importance of the Community Group as a collaborative and inclusive space. The Chair highlighted the ongoing commitment to co-production, ensuring that lived experience remains central to all Triangle of Care development and decision-making.
The purpose of the meeting was outlined, with emphasis on shared learning, constructive challenge, and influencing national work. Members were reminded that discussions within the group directly inform improvements to Triangle of Care standards, guidance, and implementation across services.
2. Triangle of Care Update (with Q&A)
Mary Patel – Carers Trust
The Triangle of Care update focused on how the programme continues to evolve as a learning-led, improvement-focused framework rather than a compliance or inspection tool. Members were reminded that the Triangle of Care is designed to support services to reflect honestly on how well carers are recognised, involved, and supported, and to identify practical actions for improvement.
The update highlighted the growing maturity of the self-assessment and peer review process. Increasingly, organisations are using the framework not only to evidence good practice but to challenge themselves, learn from others, and embed carer partnership more consistently across teams and pathways.
Self-Assessment and Peer Review: What’s Working Well
The self-assessment process continues to be a key entry point for organisations engaging with the Triangle of Care. Where we were updated on how self-assessment encourages teams to pause and reflect on everyday practice, policies, and culture, rather than relying solely on written procedures. When combined with peer review, this reflection is strengthened by external challenge and lived-experience insight.
As part of the update, members were updated on emerging learning from Triangle of Care reports, including self-assessment submissions and peer review feedback. These reports were described as an important source of insight into how carer involvement is experienced on the ground, highlighting both areas of strong practice and recurring challenges across services
NOTE: These include reports going back 6 months, so not all NHS trusts listed
Peer review was described as most effective when organisations approach it with openness and curiosity. Lived-experience peer reviewers play a crucial role in asking different questions, highlighting blind spots, and grounding discussions in real-world carer experience.
A key discussion point was how to balance national consistency with local flexibility. Members acknowledged that while the Triangle of Care provides a shared framework and standards, services operate within different contexts, populations, and resource constraints.
Triangle of care and Patient Carer Race Equality Framework updates
The Triangle of Care and PCREF Phase 2 pilot will be launched in April 2026, to test co-produced specialist guidance to support integration of carers from racially marginalised communities into the Triangle of Care.
Alignment with Wider System Priorities
Members discussed how Triangle of Care activity aligns with broader system developments, including Mental Health Act reform, integrated care, and equality frameworks. There was strong agreement that Triangle of Care should not sit in isolation but be embedded within wider quality improvement, safeguarding, and workforce development agendas.
The need to visibly align Triangle of Care with the Patient and Carer Race Equality Framework was reiterated. Members emphasised that carers must be able to see how equality commitments translate into tangible actions within standards, training, and evidence.
Key points
Aligning Triangle of Care with Mental Health Act reform
Embedding within wider system and quality frameworks
Stronger visibility of equality and race equity
Carer Voice and Evidence of Impact
A recurring theme was the importance of demonstrating impact. Members discussed how services can better evidence carer involvement and experience beyond policies and training records. This includes qualitative feedback, lived-experience insight, and examples of how carer input has influenced service design and delivery.
Emerging Challenges and Areas for Development
The update also acknowledged ongoing challenges, including workforce pressures, digital transformation, and uneven awareness of the Triangle of Care across organisations. Members noted that carer involvement can become fragile during periods of change unless it is firmly embedded in systems and culture.
Summary: Where the Programme Is Heading
The Triangle of Care update concluded with a shared understanding that the programme is well-established but still evolving. The focus for the next phase is on deepening impact, strengthening alignment with equality and legislative change, and supporting services to move from intention to consistent, inclusive practice.
Key discussion points
Peer review as a developmental, learning-focused process
Balancing national consistency with local flexibility
Alignment with Mental Health Act reform and equality frameworks
Keeping carer voices central to assessment and review
3. Sharing Experiences as a Peer Reviewer
Carer involved with Avon & whitlshire
A carer presented from her involvement at Avon and Wiltshire Mental Health Partnership NHS Trust, where she is involved as a lived-experience peer reviewer contributing to Triangle of Care.
She shared reflections from her role as a lived-experience peer reviewer. She spoke about the importance of authenticity, trust, and transparency in the peer review process, and how lived experience strengthens both credibility and impact. Her contribution reinforced the value of co-production and highlighted how peer review can challenge assumptions, surface good practice, and promote more carer-inclusive cultures within organisations.
The discussion reinforced that organisational openness and leadership engagement are critical to turning peer review feedback into real change. Members reflected on how hearing directly from peer reviewers deepens understanding of the practical impact of policies on carers.
Q&A / Discussion
Members asked how organisations typically respond to lived-experience feedback.
The involved carer noted that openness and leadership support were key factors in whether reviews led to meaningful change.
Discussion reinforced the importance of preparing services for peer review so that carers feel genuinely welcomed and listened to.
4. Carer Contingency Planning – Presentation and Local Practice
Mary Patel Local example: Carly Driscoll – Bradford District Care
This session focused on carer contingency planning as a key element of carer support and crisis prevention. The presentation outlined why contingency planning is critical in reducing carer anxiety, preventing emergency admissions, and ensuring continuity of care when carers are unable to continue their role.
Carer Contingency Planning (CCP), as championed by Carers Trust, is designed to support carers by planning ahead for times when they might suddenly be unable to continue caring. This might include illness, emergencies, hospitalisation, or other crises. CCP shifts the focus from reactive support during crisis moments to proactive planning that reduces anxiety and prevents avoidable breakdowns in care.
Carers Trust emphasises that CCP is a conversational, personalised process where the carer’s expertise is central. Carers know the routines, preferences, and cues that matter for the person they care for; the goal of CCP is to capture that knowledge in a way that can be shared quickly and effectively with services, families, and emergency responders when needed.
A local practice example from Bradford District Care demonstrated how contingency planning can work in practice, highlighting practical tools, partnership working, and engagement with carers. Discussion explored the benefits of clear, accessible plans, while also acknowledging challenges around awareness, consistency, and uptake
The local practice example demonstrated how contingency planning can be embedded into routine work through partnership approaches and proactive engagement with carers. Members discussed the importance of introducing plans early and reviewing them regularly.
Key features of the Bradford approach
Routine integration: CCP discussions happen early, not just in crisis moments
Partnership working: Health, social care, and voluntary sector staff work in concert
Accessible documentation: Plans are shared in forms that carers can use and update
Support for carers: Carers are supported to lead the planning, not be passive recipients
Ongoing review: Plans are revisited as needs and circumstances evolve
Benefits seen locally
Carers report feeling more confident and less anxious
Greater clarity across professionals when carers are unavailable
Fewer last-minute, unplanned crises or service escalations
Better use of local support networks when official services are stretched
Q&A / Discussion
Questions focused on how contingency plans are introduced to carers and reviewed over time.
Members raised concerns about low awareness of contingency planning among carers not already engaged with services.
Discussion highlighted the need for flexibility, recognising that carers’ circumstances can change rapidly.
5. Carer Contingency Planning – System Perspective
Sara Lewis – SW London ICB
Sara Lewis’s session focused on Carer Contingency Planning (CCP) as a core, preventative element of carer support rather than a reactive or optional add-on. CCP is a structured way of planning for what should happen if a carer is suddenly unable to continue caring due to illness, crisis, exhaustion, or an emergency. At its heart, CCP is about reducing uncertainty and anxiety for carers while ensuring continuity and safety for the person they support.
Sara emphasised that effective CCP recognises carers as partners with expert knowledge of the person they care for. The process supports carers to articulate what matters most, what routines and support are essential, and who needs to be contacted in an emergency. When done well, CCP helps prevent avoidable crises, emergency admissions, and breakdowns in care by making plans visible, accessible, and shared across relevant services.
Accessibility was a major theme, particularly the risks of digital exclusion. While digital tools can be effective, members stressed the need for non-digital options, language support, and culturally appropriate approaches to ensure equity.
Key Takeaways from Sara Lewis’s Session
Carer Contingency Planning is preventative, not reactive
CCP is built on early, ongoing conversations with carers
Plans should reflect what matters to carers and the cared-for person
CCP must be accessible, inclusive, and culturally appropriate
Digital tools can help, but must not increase exclusion
Successful CCP requires shared ownership across services
When embedded well, CCP reduces crisis, anxiety, and system pressure
Q&A / Discussion
Members questioned how to balance digital innovation with the risk of digital exclusion.
Language barriers and accessibility for carers with different communication needs were highlighted.
Discussion emphasised that contingency planning must be embedded into standard care planning processes, not treated as optional or additional.
6. Looking Ahead: Priorities for the Community Group
The “Looking Ahead” discussion focused on how the Triangle of Care Community Group can continue to influence meaningful change for carers in an evolving policy and practice landscape. Members reflected on the increasing complexity of health and care systems and the importance of ensuring that carers are not left behind as reforms, digital transformation, and workforce pressures accelerate.
A strong theme throughout the discussion was visibility, making carer involvement, equality, and partnership explicit in practice, evidence, and outcomes. Participants emphasised that carers must not only be recognised in principle but experience consistent involvement and support in real-world settings. The group agreed that the next phase of work should strengthen both strategic influence and practical implementation.
Mental Health Act Reform and Carer Involvement
Members discussed the implications of upcoming Mental Health Act reform, particularly around carers’ rights, information-sharing, and involvement in decision-making. There was recognition that Triangle of Care principles provide a strong foundation for supporting services to meet new expectations, but that further work will be needed to translate legislation into everyday practice.
The group highlighted the risk that carers could be inconsistently involved if workforce understanding is weak or if systems focus narrowly on legal compliance. Proactive guidance, training, and examples of good practice were seen as essential to ensure carers are meaningfully included rather than consulted as an afterthought.
Equality, Race Equity, and Inclusion
A central priority looking ahead is ensuring that Triangle of Care activity visibly aligns with the Patient and Carer Race Equality Framework (PCREF). Members stressed that carers from racialised and marginalised communities often face additional barriers to involvement, including mistrust, cultural misunderstandings, and unequal access to support.
The group agreed that equality must be embedded into standards, peer review evidence, and training—not treated as a parallel or optional agenda. This includes capturing meaningful data, listening to diverse carer voices, and ensuring culturally responsive practice is clearly demonstrated.
Workforce Training and Education
Workforce development was identified as a critical lever for long-term change. Members highlighted the need to strengthen carer awareness training across all roles, particularly for staff new to mental health and social care settings. Without this foundation, carer involvement remains inconsistent and dependent on individual attitudes rather than organisational culture.
There was strong support for influencing pre-registration education, including universities and training providers, to embed carer awareness earlier. This was seen as an opportunity to normalise partnership with carers from the start of professional careers rather than trying to retrofit it later.
Key points
Strengthening carer awareness across the workforce
Embedding Triangle of Care principles early in training
Influencing universities and pre-registration pathways
Moving from individual goodwill to system-wide culture change
Digital, Data, and Accessibility
Digital transformation featured prominently in the discussion, with members acknowledging both its potential and its risks. While improved data systems and digital tools can support information-sharing and coordination, there was concern that carers without digital access or confidence may be excluded.
Participants emphasised that digital solutions must be designed inclusively, with non-digital alternatives always available. Data collection should support understanding of carer experience and inequality, not become a barrier to support.
Key points
Digital tools should support, not replace, relationships
Risk of digital exclusion for some carers
Importance of non-digital alternatives
Using data to improve equity, not reinforce gaps
Young Carers and Marginalised Groups
Supporting young carers and carers from marginalised communities was highlighted as a continuing priority. Members noted that these groups are often under-identified and less likely to be involved in care planning or decision-making, despite carrying significant caring responsibilities.
The group agreed that future work should focus on visibility, early identification, and tailored approaches that recognise the specific needs and challenges faced by these carers. Partnership with education, community, and voluntary sector organisations was seen as essential.
Key points
Improving identification of young carers
Addressing barriers faced by marginalised carers
Tailored, age-appropriate and culturally sensitive support
Stronger partnership working beyond health services
Collective Commitment Moving Forward
The discussion concluded with a shared commitment to using the Community Group as a platform for influence, learning, and accountability. Members recognised the value of continuing to share practical examples alongside strategic discussion, ensuring that Triangle of Care principles are translated into everyday practice.
Looking ahead, the group aims to remain proactive, inclusive, and responsive—supporting services to recognise carers as equal partners and ensuring that no carer is left unseen or unsupported as systems evolve.
Key discussion points
Preparing for Mental Health Act reform
Embedding the Patient and Carer Race Equality Framework
Improving workforce training and education pathways
Supporting young carers and marginalised communities
Improving data and digital systems without exclusion
As Chair I thanked contributors and reaffirmed the importance of continued collaboration to ensure carers are recognised as equal partners in care, with Triangle of Care principles translated into meaningful practice across services.
For those interested to hear more about triangle of care, see details below
Chaired by Matthew McKenzie, Lived-Experience Carer
The latest meeting of the National Ethnic Mental Health Carer Forum brought together unpaid minority carers, community partners and four NHS mental Trusts (Avon & Whiltshire were kind enough to be included to update) to explore progress toward the Patient & Carer Race Equality Framework (PCREF), share challenges, and elevate lived-experience voices. As always, I ensured the space remained honest, fast-paced and rooted in what truly matters to ethnic minority carers: being heard, understood and included.
My latest blog for the November forum captures key highlights from each Trust, along with questions raised by attendees, reflecting the critical concerns and lived realities that continue to shape PCREF work across the country.
1. Avon & Wiltshire Mental Health Partnership Trust (AWP)
Focus: Triangle of Care, PCREF oversight, carer champion roles.
Avon & Wiltshire outlined how their PCREF programme is being driven through a clear governance structure, including a central Oversight Group and locality-based meetings. These layers ensure that learning from communities and staff filters upward and influences whole-trust priorities. Their collaboration with Nilaari (I think that is what their called), a long-standing community organisation supporting racially marginalised groups, has been key in grounding their PCREF work in authentic community voice.
A central pillar of their presentation was the strengthening of the Triangle of Care and carer-related PCREF oversight. They recognised that carer involvement cannot rely on goodwill or isolated champions; it requires structurally defined roles, written responsibilities, and consistent organisational expectations. The Trust is working on ensuring that every team and ward embeds a carer champion, whose purpose is not to “do everything for carers”, but to support cultural change within the workforce so that carers are recognised as equal partners.
They emphasised the importance of building staff capacity in cultural humility and safe conversations about race. AWP acknowledged that staff often feel unprepared to discuss ethnicity, discrimination or identity with carers. To address this, the Trust has created psychologically safe internal spaces, particularly for racially marginalised staff—to process experiences and explore how structural and interpersonal inequalities impact both staff wellbeing and patient care. This cultural environment is foundational to PCREF implementation because it shapes how confidently staff engage with diverse carers.
Key Points:
Carer champions must support, not replace, teams in working with carers.
Emphasis on psychological safety for racially marginalised staff and carers.
Encouraging honest conversations around race, trauma, and culture across staff teams.
Questions raised by attendees:
How do you embed cultural awareness within staff teams, not just for carers? – Concern that staff dynamics and cultural differences must be addressed to create consistent culturally responsive care.
How do staff and leaders hold ‘difficult conversations’ about race and safety? – Attendees wanted clarity on how psychological safety is practiced and how managers are supported.
🌟 2. Birmingham & Solihull Mental Health NHS FT
(Children & Young People’s Division – “Co-STARS” programme)
Birmingham & Solihull (CYP) presented one of the most detailed and emotionally grounded PCREF programmes, shaped heavily by lived-experience research with Black diaspora families. Their PCREF priorities, knowing our communities, transforming with communities, and delivering care that works reflect a commitment to embedding cultural responsiveness at every step. Their partnership with the University of Birmingham and Forward Thinking Birmingham has produced the Co-STARS project, a blend of lived-experience-led community work and staff training modules.
A major part of their PCREF advancement comes from working intensively with families to capture how racialised parents feel when using services. The Trust shared powerful testimonies from Black carers who described needing to “emotionally self-regulate” in meetings to avoid being labelled angry, unstable or cold. Parents also highlighted the emotional labour of protecting their children from stereotypes such as the “angry Black boy”, as well as fears of being adultified or dismissed. These insights have directly reshaped responses from clinical teams and informed the development of carers’ passports and safe spaces.
Birmingham & Solihull also emphasised building structures to ensure that their care pathways become culturally competent and adaptive. They are embedding PCREF champions across all clinical pathways, from eating disorders to psychosis and autism, ensuring diversity and inclusion principles shape every aspect of assessment, treatment and review. The Trust is also developing e-learning on culturally responsive practice, and expanding identity-specific support spaces (e.g., Black Carers Groups and new plans for Asian carers’ spaces). This multi-layered approach reflects a commitment to PCREF that is both structural and deeply relational.
Key Points:
Embedding culturally competent conversations within CYP teams.
Developing a Black Carers Group and safe spaces for racialised parent groups.
New e-learning on culturally responsive practice (from Co-STARS package).
Use of carer passports to ensure carers feel like equal partners.
Strong focus on how ethnic minority parents feel judged or misread by services (e.g., “angry Black woman,” “cold mother”) – themes drawn directly from carer focus groups.
Recognising adultification, stereotyping, and the emotional labour families perform.
Questions raised by attendees:
What about older adult Black communities? – Carers questioned how older Black adults, shaped by decades of racism, would be included in PCREF work.
Are you working with the police on cultural awareness? – Concerns around disproportionate use of Section 136 and stereotypes (e.g., assuming someone is “aggressive” because they speak loudly or gesture).
How will parent–carer voices shape service pathways and outcomes across all diagnoses (e.g., autism, psychosis)?
3. Sussex Partnership NHS Foundation Trust
Sussex Partnership presented PCREF as a three-pillared programme: data, co-production & engagement, and workforce development. Their first priority is improving ethnicity and protected characteristics data, which they acknowledged has historically been inconsistent. Sussex is launching a behavioural-change campaign that involves interviewing service users from minority backgrounds about why they may decline to share ethnicity, alongside staff interviews to understand documentation issues. Their goal is a transparent baseline from which meaningful PCREF action can be driven.
The Trust also described significant investment in a new data infrastructure via Power BI dashboards. These tools will pull together real-time information on areas such as restraint, Section 132 rights, and involuntary detention by ethnicity. The Trust stressed that PCREF cannot function without high-quality data because inequalities must be clearly visible and accessible to teams at every level—from ward managers to executive boards. Their future ambition is to enable quicker identification of disparities and faster interventions that prevent harm.
Sussex’s strongest focus was on building genuine co-production through their Expert Delivery Group (EDG). Unlike past approaches where community partners were only consulted, the EDG is designed as a collaborative decision-making space. Sussex acknowledged up front that phase 1 of PCREF planning did not fully embody equal partnership, and committed to ensuring that phase 2 will be co-produced from the ground up. The EDG will define what co-production means, co-design PCREF implementation plans, and shape updates that reflect community priorities, trust recovery, and anti-racist aspirations.
Key Points:
A behavioural-change campaign to improve ethnicity data recording (currently 65% compliance).
Development of Power BI dashboards for rapid inequality analysis.
Defining anti-racist and cultural competency skills for staff, tied to new EDI training.
Creation of the Expert Delivery Group (EDG) as a collaborative community–trust space.
Questions raised by attendees:
Is this “real” co-production or consultation? – Attendees challenged Sussex on whether the initial plan was created with the community or presented to them.
How will service users and carers hold equal power within co-production?
How will your anti-racism ambitions be demonstrated externally to communities? – Attendees expressed concerns that staff training alone does not reassure communities.
How will carers’ needs be embedded in PCREF (Triangle of Care)?
🌟 4. Kent & Medway Mental Health NHS Trust
Presenter:Kamellia (with contribution from Harriet – Lived Experience)
Kent & Medway showcased a comprehensive and governance-driven PCREF structure supported by their Equity for All Assurance Group. The Trust has embedded health inequalities into its broader strategy and is working to ensure that PCREF, protected characteristics data and health equity are woven into everyday practice. With the Trust’s newly updated name and identity, PCREF sits at the centre of a renewed commitment to equitable access, outcomes and patient experience across Kent and Medway.
Their PCREF progress includes delivering cultural competence training to 259 senior leaders, a significant investment in shifting leadership behaviour and expectations. They have also identified major data disparities in areas such as complaints, where ethnicity recording is only around 30%. To address this, they are rolling out the About Me form across their clinical system (Rio), which streamlines demographic and protected characteristics documentation for both carers and patients. This step is being supported by staff training designed to build confidence in discussing sensitive identity-related topics.
Kent & Medway also highlighted the expansion of their new Involvement & Engagement Team, which links directly with communities across East, West and North Kent. They are testing a Health Inequalities Toolkit, improving carer experience data collection, and creating new Family, Friends & Carers forms that capture protected characteristics, communication needs, and whether a carers pack was offered. The Trust’s approach is detailed, structural and long-term, aiming to embed PCREF as part of “business as usual” rather than a separate initiative.
Key Points:
259 senior leaders trained in cultural competence.
New About Me demographic/protected characteristics form launching trust-wide.
Major data gaps identified (e.g., only 30% ethnicity data for complaints).
New Involvement & Engagement Team connecting with community groups.
Testing the Health Inequalities Toolkit .
New Family, Friends & Carers Information Form including carer-pack tracking.
Questions raised by attendees:
Do you provide information in languages other than English? – Carers stressed that if translations don’t exist, PCREF is inaccessible from the start.
How will carers be supported to attend meetings given their unpredictable caring responsibilities?
How will you gather demographic data for carers when many do not have Rio records?
How will minority groups be reached in areas where the Trust’s population is overwhelmingly White British?
5. Carer Support Organisation (Kent & Medway Carers Support)
Presenter:Donna Green (involve Kent)
Key Points:
They run trust-wide carer experience groups and targeted workshops.
Emphasised difficulty for carers to attend meetings due to constant demands.
Highlighted the need for multiple approaches, including creative well-being sessions.
Closing Reflections from the Forum
I wrapped up the session acknowledging:
The strong desire across Trusts to improve PCREF delivery.
The pressure to progress quickly without losing sight of lived experience leadership.
The need to bring CQC into future meetings for transparency around expectations.
The importance of ethnic minority carers having a forum that values honesty over polished presentations.
Final Thoughts
This month’s forum demonstrated that while progress continues nationally, there remain shared challenges across NHS Mental HealthTrusts:
Recording ethnicity and protected characteristics meaningfully
Embedding anti-racism beyond training modules
Meeting the needs of Black, Asian and other racialised carers
Co-production that is real, not rhetorical
Involving carers whose time and emotional capacity are already stretched
Ensuring safety, trust and humanity in every interaction.
Above all, the session showed that ethnic minority carers are not passive observers they’re leading, questioning, shaping and insisting on accountability at every step.
By Matthew McKenzie facilitator of National ethnic carer forum and Chair of Triangle of Care Community Group
Racism is not a distant or abstract concept it is a lived reality for many individuals and families, particularly those from Black, Asian, and other minority ethnic backgrounds. Its effects are pervasive, touching every aspect of life, from education and employment to housing, healthcare, and policing.
This article is a transcript of the video below.
In the UK and beyond, the consequences of racism are especially pronounced in the realm of mental health, where both direct and indirect forms of discrimination create barriers to wellbeing and access to care.
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.
Hello everyone, I’m Matthew McKenzie, and in this blog I want to raise awareness about the various forms of discrimination and bias that unpaid carers, especially those looking after individuals suffering from mental illness or cancer, might encounter. Moreover, I am deeply involved in addressing racism and discrimination, sharing my firsthand knowledge of these issues, particularly in the mental health system.
In this article, we’ll dive into some of the crucial terminology that are essential for anyone working within healthcare settings, caring for people from minority groups, or even interacting as patients themselves.
In this blog, I’ll focus primarily on the acute settings within general hospitals. Most of these terms and definitions, however, are broadly applicable across the entire mental health system. We will go over around 12 to 13 key terms, highlighting their relevance and providing examples to illustrate how they manifest in healthcare contexts.
You can also watch the video lecture off my YouTube Channel.
Discrimination
Discrimination in healthcare involves treating individuals unfairly based on their race, ethnicity, or other characteristics. This unfair treatment leads to poor health outcomes for those affected.
Welcome to another blog by Matthew McKenzie Carer activist. As a lived experienced member of the Race Equality Foundation. I am proud to present an exciting project that seeks to address the inequalities in health.
The London Anti-Racism Collaboration for Health (LARCH) have launched a new tool to help health and care organisations tackle systemic racial health inequalities.
The Race Equity Maturity Index (REMI) is the first framework of its kind, allowing organisations to track, measure and enhance their anti-racist activities using an evidence-based approach.
The REMI was designed with people and communities from across London, reflecting the diversity of both London’s population and its health and care workforce.
The REMI is intended to help all the parts of the health and care ecosystem meaningfully address the inequalities faced by Black, Asian and minoritised ethnic Londoners, which include:
Using the REMI, organisations can self-assess their progress in tackling these inequalities. The tool uses measurable indicators to categorise organisations into one of six stages of racial maturity, with clear pathways for progression between each stage.
Tackling Cancer Health Inequalities in Patients with Serious Mental Illness
Addressing health disparities, especially for patients with serious mental illness (SMI), is crucial in improving cancer treatment outcomes. This post by Matthew Mckenzie who facilitates the National cancer carer forum explores the multifaceted challenges faced by this vulnerable group and the necessary steps to tackle these inequalities.
To watch the video regarding Cancer and Serious Mental Illness, please click below.
Before continuing with the post, South East London Cancer Alliance. have just released their Cancer And Serious Mental Illness Information Resource. These have been co-created by SELCA, South London & Maudsley and the HIN, while working closely with people with lived experience of cancer and serious mental illnesses. You can visit and see the resources here: https://www.selca.nhs.uk/patients-and-carers/cancer-and-serious-mental-illness
The following sections might be of particular interest as they focus on cancer risks and screening.
Another blog post from Matthew McKenzie, author of “Race, caring and mental health”. In this post, Matthew explores the depressing results of top health inequality reports from 8 organisations.
If you want to watch the more detailed version of this post, then watch the video below, where you can explore the profound disparities in healthcare faced by ethnic minorities, revealed through key reports from NHS, Public Health England, CQC, and more. The video also presents the impact on mental health, maternity care, chronic diseases, and access to healthcare services.
Understanding Health Inequalities in the UK
Health inequalities have been a longstanding issue, particularly affecting various minority groups. These disparities in health outcomes are alarming and have become increasingly scrutinized, especially following the emergence of the COVID-19 pandemic. Matthew McKenzie, a carer activist and volunteer, delves into these pressing issues, focusing primarily on mental health and maternity care within minority communities. In this article, we’ll explore the findings from various reports and organizations concerning health inequalities in the UK and the urgent need for systematic reforms to achieve equitable health outcomes for all.
Health Inequalities: A Persistent Issue
The discussion about health inequalities is not new. Health disparities have been documented long before the recent revamping of the Mental Health Act, dating back to the initial implementation of the Act in 1983. Despite various efforts to address these issues, significant inequalities remain, affecting a wide range of services including mental health, maternity care, and primary care.
Focus on Minority Groups
Health inequalities do not solely affect ethnic minorities. They also encompass groups such as the LGBTQ+ community, travelers, and even certain regional populations within the country. However, the emphasis often lies on ethnic minorities due to the distinct challenges they face.
Key Findings from Health Inequality Reports
Several organizations have conducted extensive research to document and understand the health disparities present in the UK. These reports consistently highlight the unequal treatment and outcomes experienced by minority groups.
NHS Race and Health Observatory Report
In 2022, the NHS Race and Health Observatory released a comprehensive report on ethnic disparities in health services:
Mental Health: Black adults are more than four times as likely to be detained under the Mental Health Act compared to white adults. Ethnic minorities also face higher rates of coercion, including being restrained and put in seclusion.
Maternity Care: Black women are four times more likely to die during pregnancy or childbirth compared to white women. Asian women are almost twice as likely to face similar fates.
Primary Care Access: Ethnic minorities report greater difficulties in accessing GP services and obtaining referrals for tests and treatments, leading to a lack of trust in healthcare services.
Public Health England Review on COVID-19
The impact of the COVID-19 pandemic has further exposed underlying health inequalities:
Mortality Rates: The death rates from COVID-19 were significantly higher among Black, Asian, and minority ethnic groups compared to white groups. Black men were 3.3 times more likely to die from COVID-19 than white men. Similarly, Bangladeshi and Pakistani communities were twice as likely to die from the virus.
Socio-Economic Factors: Ethnic minorities were more likely to be in frontline jobs and live in overcrowded housing, increasing their vulnerability to COVID-19.
Systematic Inequalities: The pandemic highlighted the systematic inequalities in access to health services, with ethnic minorities suffering higher risks due to socio-economic disadvantages and pre-existing health disparities.
Marmot Review on Health Inequalities (2010-2020)
The Marmot Review, followed by its 2020 update, explored health inequalities across the UK, focusing on how deprivation, ethnicity, and other social determinants affect life expectancy and health outcomes:
Life Expectancy Gap: Ethnic minorities, particularly black and South Asian populations, face lower life expectancy and higher rates of chronic conditions compared to white populations.
Social Determinants: Ethnic minorities are disproportionately affected by poor housing, low income, unemployment, and education disparities, which contribute to long-term health inequalities.
Care Quality Commission (CQC) Reports
The CQC has consistently highlighted inequalities in accessing and receiving healthcare:
Mental Health Care: Black and other ethnic minority groups are more likely to be subjected to compulsory mental health treatment and face challenges in accessing early support.
Discrimination and Communication Barriers: Language barriers, cultural misunderstandings, and institutional racism contribute to poorer health experiences for ethnic minorities.
Organizations Addressing Health Inequalities
Various organizations are actively working to address these disparities and promote equitable health outcomes:
The Race Equality Foundation
The Race Equality Foundation has published several studies highlighting the experiences of ethnic minorities within the NHS:
Poor Health Outcomes: Ethnic minorities are more likely to report poorer health outcomes, delayed diagnoses, and negative experiences within NHS services.
Language and Cultural Barriers: Language barriers and the lack of culturally appropriate services lead to worse health conditions for ethnic minorities, particularly in accessing dementia care services.
NHS Workforce Race Equality Standard
The NHS Workforce Race Equality Standard focuses on the experiences of staff from ethnic minority backgrounds:
Discrimination Among Staff: Ethnic minority staff, particularly black and South Asian healthcare professionals, report higher levels of discrimination, harassment, and bullying, which can affect the quality of care provided to patients.
Impact on Patient Care: Discriminatory treatment of ethnic minority staff may be linked to poorer outcomes for ethnic minority patients, as staff experiencing racism are less engaged and less able to deliver high-quality care.
The Need for Systematic Reforms
The consistent and robust findings from these reports underscore the urgent need for systematic reforms to address health inequalities:
Institutional Racism: Addressing institutional racism within healthcare settings is critical to ensuring equitable treatment and outcomes for all patients.
Cultural Competence: Improving cultural competence and language services within healthcare can help bridge communication gaps and provide more culturally sensitive care.
Socio-Economic Supports: Addressing socio-economic disparities, including housing, income, and education, can reduce long-term health inequalities and improve overall health outcomes for minority groups.
Inclusive Policies: Developing inclusive policies and practices within healthcare institutions can foster a more supportive environment for both patients and healthcare staff.
Conclusion
Health inequalities remain a significant challenge in the UK, disproportionately affecting minority groups. Despite various efforts and reports highlighting these disparities, there is still much work to be done. Addressing these inequalities requires a comprehensive and systematic approach, focusing on institutional racism, socio-economic factors, and cultural competence within healthcare services. Only through sustained and concerted efforts can we hope to achieve equitable health outcomes for all, ensuring that everyone has access to the care and support they need.
Welcome to the March 2022 update of my Ethnic mental health carers forum. The forum is aimed at those from a diverse ethnic background who care for someone suffering serious mental illness. The forum also covers areas under South London & Maudsley NHS trust and also Oxleas NHS foundation trust, but forum does allow ethnic carers to attend from other service areas. Just to note, I am also the chair of Carers UK Ethnic or BAME advisory group.
Speakers for my March 2022 forum where
Abigail Babatunde – Research Associate on the Advance Statements Project (AdStAC)
Karen Edmunds – Head of Equality and Human Rights presenting on Oxleas Equalities projects
Karen Edmund presents on Equalities updates at Oxleas NHS services
Karen felt that after the introductions of members of the BAME group, that Oxleas are in the same place as some other NHS trusts are in terms of carer involvement, but she admitted there is more work to do. Karen talked about how they are developing what’s called an “Involvement hub”, which is been led by Jacqueline, who’s Oxleas NHS assistant director of involvement with her team.
Karen feels there has been reasonable amount of service user involvement, where people work with experienced practitioners, but when it comes to carers and community organisations, there is a lot of work to do and they haven’t been quite maybe quite as good as some other NHS Trusts out there.
Karen spoke on the following topics on what Oxleas is working on regarding equalities.
Workforce Equality:
Workforce Race Equality Standard (WRES) -reporting and annual action plan
Workforce Disability Equality Standard (WDES) – reporting and annual action plan
Manage our multifaith chaplain + Chaplaincy contract with Lewisham and Greenwich Trust
Service User Inequalities Group (new)
Patient and Carer Race Equality Framework (new)
Staff and patients / service users / carers
Equality Delivery System 2 (EDS2) annual report
Public Sector Equality Duty
Equality and Human Rights Policy, Equality and Diversity training
Freedom of Information requests related to equality
Lastly to enable Oxleas to become an early adopter of the Patient and Carer Race Equality Framework (SLaM have been involved in the pilot phase)
Karen then spoke about building a Fairer Oxleas Delivered actions Year 1
Improving cultural competency:
Cultural intelligence and inclusive leadership training for the Executive team and 50 senior managers
Inclusive leadership workshops open to all managers
Comfortable talking about race workshops open to all managers
Living our values training for managers to deliver a values session with their team
‘In Each Other’s Shoes’ film about microaggressions, plus a guide on microaggressions
Team talks to show ‘In Each Other’s Shoes’ and discuss it
Building a Fairer Oxleas section on the Ox (our intranet)
Race Resource pack with articles, short films, and useful links to external resources
The outcome will look to improve all experiences of their Black, Asian and minority ethnic staff, which will help improve the experience of Black, Asian and minority ethnic service users and carers
Karen explained The NHS Race and Health Observatory review February 2022 found that:
Ethnic minority groups experienced clear inequalities in access to Improving Access to Psychological Therapies IAPTs; overall, ethnic minority groups were less likely to refer themselves to IAPT and less likely to be referred by their GPs, compared with White British people.
Evidence was identified for inequalities in the receipt of cognitive behavioural therapy (CBT) with ethnic minority people with psychosis less likely to be referred for CBT, and less likely to attend as many sessions as their White counterparts
The review provided strong evidence of clear, very large and persisting ethnic inequalities in compulsory admission to psychiatric wards, particularly affecting Black groups, but also Mixed Black & White groups and South Asian groups.
There was also evidence of harsher treatment for Black groups in inpatients wards, e.g., more likely to be restrained in the prone position or put into seclusion.
More bad news was on how black children were treated in the NHS
Parents reported their children facing the same barriers to accessing services as reported for adult mental health services. Two studies of young Black men showed that they were deterred from seeking help by their knowledge of injustices in mental health services relating to Black Caribbean and Black African populations. Two large national studies found that ethnic minority children were more likely to be referred to CAMHS via social services, education or criminal justice pathways. This was particularly stark for Black children who were 10 times more likely to be referred to CAMHS via social services (rather than through the GP) relative to White British children.
Karen then talked about Oxleas new Service User Inequalities Group
She then moved to its aims which was to explain that it will help deliver Oxleas’s strategy on service user access and inequalities
This will be done by looking at their data on the ethnicity, disability, gender identity, religion, and sexual orientation of patients compared to the local population which will lead to clear actions to tackle inequity of access, experience and outcomes.
Karen the talked about how Supporting Oxleas staff to deliver inclusive care on Proposed actions to tackle inequalities
This is on how all services have a generic email for patient contact to provide an alternative to phone contact Clear information in a range of formats in plain language on what each service provides, referral criteria, and how to get access Disability access guides to key sites available on public website.
Oxleas NHS will be an early adopter of the Patient and Carer Race Equality Framework Engagement with local communities and use this feedback to target service development where it’s needed most Scope care pathways where we can pilot inclusive assessments, factoring culture, ethnicity, disability, sexual orientation and gender identity Patient experience data by protected characteristics will be routinely produced, analysed and reviewed by services to identify differences of experience and then plan actions to address these.
Questions from Carer members
You shown what Oxleas are doing for CAMHS and Adult service, but what about older Adults?
Its an interesting and important presentation, but I am wondering why a white woman is presenting on equalities regarding disadvantages of black people, does Oxleas employ representing the communities it serves?
With the impact of COVID on ethnic communities, what does Oxleas have in place to reduce the impact?
I am interested in how Oxleas are going to work with the Patient Carer Race Equalities Framework, arent Oxleas service area’s mainly white?
Lastly a question from myself is I do not see hardly any ethnic patient/carer grassroot groups that Oxleas is able to engage with. How will ethnic patient and carer groups be empowered so they SEEK engagement and hold Oxleas accountable on services to ethnic communities?
Abigail presents on the Advance Statements Project (AdStAC)
Abigail spoke on how South London & Maudsley are working to promote advance statements for Black and African, Caribbean people. This is because of the high detention rates and especially with black people being more likely to be detained under the Mental Health Act.
It is important to promote why having to work with staff service users, and carers and supporters to understand how to get advanced choice documents or advanced statements can work for black people.
A Caring Mind 