Tag Archives: Community Engagement

National Ethnic mental health Carer Forum : March Update 2026

Chaired by Matthew McKenzie – Carer Activist

The March session of the National Ethnic Mental Health Carer Forum brought together carers, researchers, NHS professionals and community organisations for a conversation that felt both familiar and urgent.

Chaired by Matthew McKenzie, the forum stayed rooted in what it does best: creating a national grassroots space where lived experience meets systems, and where difficult truths are not avoided.

The agenda reflected that balance clearly:

  • 10:35 – Professor Saffron Karlsen (University of Bristol)
  • 11:20 – King’s College London (Phoebe Averill & team)
  • 11:50 – Parliamentary and Health Service Ombudsman
  • 12:00 – Thomas Ince – Universal Care Plan

Racism and Mental Health: Naming What We Already Know

Professor Saffron Karlsen opened the forum with a presentation that didn’t just describe inequality it explained how it is produced, sustained, and experienced in everyday life.

Drawing on over 30 years of research, Professor Saffron Karlsen is a sociologist at the University of Bristol whose research examines how racism and social inequality affect health, particularly within ethnic minority communities.

she spoke about racism not as a single act or incident, but as something woven into the fabric of society. It operates quietly and persistently, through institutions, through policies, through media narratives, and through the ways people interact with one another. The effect is cumulative. It builds over time, shaping not just opportunities, but health itself.

What made the presentation particularly powerful was how it connected these structural ideas to real human consequences. Racism was described as something that works on multiple levels at once: from overt abuse or violence, to the less visible but equally damaging experience of simply knowing that you live in a society where you may be treated unfairly. That awareness alone carrying the expectation of discrimination creates a constant undercurrent of stress and anxiety.

She explained how this stress doesn’t just sit in the mind. It translates into physical outcomes. People exposed to racism are more likely to experience anxiety, depression, and long-term distress, but also physical health inequalities such as cardiovascular disease. These outcomes are often misunderstood or misrepresented. Too frequently, they are explained away as lifestyle issues diet, exercise, personal choice without recognising the deeper social conditions that shape those behaviours in the first place.

A particularly striking part of the presentation focused on how people respond to these pressures. When individuals feel powerless to change their circumstances, they may turn to coping mechanisms smoking, drinking, or withdrawing from services. These responses are then judged in isolation, rather than understood as part of a wider context. In this way, the system not only fails to address the root causes but can end up reinforcing blame on the individual.

Perhaps the most important insight came when the discussion turned to healthcare itself. Even when services are available, they are not always experienced as safe or trustworthy. Saffron shared research showing that people may avoid seeking help not necessarily because of direct negative experiences, but because of what they have seen and heard about racism more broadly. The perception of risk becomes enough to keep people away.

One example described a woman who, during the COVID period, chose to avoid hospital care entirely. Her decision was shaped by what she had seen in public discourse and online reactions to racial justice movements. It left her feeling that she could not trust how she would be treated. This kind of anticipatory fear of not being treated with dignity or fairness adds another layer of stress to an already difficult situation.

The presentation also challenged the way healthcare systems understand illness. Many services still operate within a narrow biomedical framework, focusing on symptoms and diagnoses while overlooking the social realities that contribute to them. For people from marginalised communities, this can lead to experiences where their perspectives are dismissed or misunderstood. They may try to explain how racism, housing, poverty, or life circumstances have shaped their health, only to find those explanations sidelined.

This is where the concept of “epistemic injustice” becomes important, although Saffron didn’t dwell on jargon, the meaning was clear. It is about whose knowledge counts. When patients and carers are not listened to, or when their experiences are not taken seriously, care becomes something done to them, rather than with them. For many, this is not just frustrating it is re-traumatising.

Professor Saffron also showed a video – Nilaari delivering hope A community mental health provider for people of colour, which you can watch below.

Nilaari delivering hope

Q&A Section : From Evidence to Frustration

1. “You’ve explained the problems, but what are the solutions?”

Answer:
Saffron acknowledged that addressing racism at its root is complex and long-term, but highlighted practical steps:

  • Services must be co-produced with people who have lived experience
  • Communities need to be actively involved in decision-making spaces
  • Grassroots and voluntary organisations should be:
    • properly funded
    • meaningfully included in policy and service design

She emphasised that change should be done with communities, not to them, and that learning from effective third-sector approaches is key.

2. “Do you look at drug and alcohol use as part of racism-related issues?”

Answer:
Yes, but not in the way systems often frame it.

Saffron explained that:

  • Substance use is often a response to difficult life experiences, including racism and poverty
  • Systems tend to treat it as an individual problem, rather than understanding the wider causes
  • These behaviours can reflect a lack of:
    • support
    • options
    • alternative coping mechanisms

She stressed the importance of shifting away from blame and towards understanding context.

3. “Is trauma-informed care part of the solution?”

Answer:
Trauma-informed care is important, but not sufficient on its own.

Saffron highlighted that:

  • Current models of trauma-informed care can be too narrow
  • They often fail to fully account for:
    • systemic racism
    • structural inequalities
  • Services also need to recognise that they themselves can contribute to trauma

She suggested that trauma-informed approaches must be:

  • culturally sensitive
  • shaped by different communities’ understandings of trauma

4. “What do you mean by ‘racism is a virus’?”

Answer:
Saffron used this idea as a metaphor.

She explained that:

  • Racism spreads and reproduces across society, much like a virus
  • It moves through:
    • institutions
    • policies
    • social interactions
  • It grows and reinforces itself over time

At the same time, she used this idea to challenge overly individualised thinking—highlighting that racism is structural, not just personal.

King’s College London: When Crisis Care Comes Too Late presented by Phoebe Averill.

After the earlier discussion on racism and inequality, the presentation from King’s College London brought the conversation into something more immediate what actually happens when someone reaches crisis point and needs urgent mental health support.

Phoebe Averill and her team focused on pathways under the Mental Health Act, but what emerged wasn’t a technical discussion. It was a picture of a system that often struggles at the exact moment it is supposed to respond.

They began by looking at the period just before crisis. In many cases, there are early warning signs. Carers and families notice changes subtle at first, then more obvious. They often try to raise concerns early, hoping intervention might prevent things from escalating. But too often, those early signals are not acted on.

By the time the system responds, the situation has already deteriorated.

The research highlighted that delays are not caused by a single issue, but by a combination of pressures within the system. These include:

  • shortages in hospital beds
  • fragmented coordination between services
  • breakdowns in communication across teams

While these explanations are familiar, the impact of them feels anything but routine. During the waiting period, people do not remain stable. They become more unwell, more distressed, and more at risk. What could have been addressed earlier becomes a crisis that is harder to manage.

One of the most striking parts of the presentation was the focus on what happens in that gap between “something is wrong” and “help arrives.” That space is where much of the pressure shifts onto carers.

Carers described being left to manage situations that are escalating in real time. They are expected to keep someone safe, to monitor behaviour, and to absorb the emotional weight of what is happening all while waiting for services to respond. In some cases, this can last days or even weeks.

This isn’t a formal role, and it’s not one carers are prepared for. It’s something they step into because there is no alternative.

The consequences of these delays don’t end when care finally arrives. By that point, the impact can already be significant. The research pointed to outcomes such as:

  • worsening mental health leading to longer hospital stays
  • increased risk of avoidable harm during the waiting period
  • disruption to housing, employment, and relationships

In other words, the delay itself becomes part of the problem, shaping what happens next.

Another important thread running through the presentation was the role of carers’ knowledge. Carers are often the first to recognise when something is changing. They understand patterns, triggers, and early warning signs in a way that professionals may not see immediately. Yet this insight is not always taken seriously or acted upon.

The result is a system that tends to respond late rather than early intervening at crisis point, rather than preventing it.

The KCL team were clear that their research is trying to address this gap. They spoke about building a lived experience advisory group and involving carers and service users directly in shaping the work. There was a clear intention to move beyond observation and towards something more collaborative, where lived experience informs how the research develops.

At the same time, there was a quiet recognition in the room that much of this is not new. Similar issues have been raised repeatedly over the years. The difference here was not the discovery of the problem, but the clarity of where it sits in that critical moment where response is needed, and the system is slow to act.

Placed alongside the earlier discussion on racism, this presentation added another layer of understanding. It showed how broader inequalities are not abstract—they play out in very real ways at the point of crisis. Where trust is already fragile, delays make it harder to engage. Where carers are already stretched, the system’s response can increase that pressure rather than relieve it.

By the end of the session, one idea stood out clearly: this is not just about whether care is available. It is about whether it comes at the right time, whether the right people are listened to, and whether the system is able to act before situations reach breaking point.

Parliamentary and Health Service Ombudsman: When Accountability Feels Out of Reach

The next presentation of the forum came from the Parliamentary and Health Service Ombudsman team, who joined to explain how carers and families can raise concerns when NHS care goes wrong.

On the surface, this was a session about process how complaints move through the system and when the Ombudsman becomes involved. But as the discussion unfolded, it became clear that this was really about something deeper: whether accountability is genuinely accessible to carers in practice.

The team described their role as an independent body that steps in once local complaints processes have been completed. In theory, the pathway is clear. Before approaching the Ombudsman, people are expected to go through several stages:

  • raise concerns with the service directly
  • receive a formal response, often referred to as the “final response letter”
  • only then escalate the complaint for independent review

What sounds straightforward on paper quickly became more complex when viewed through lived experience.

Carers shared how difficult it can be to even reach that final stage. The process can take months, sometimes longer, and often requires sustained effort just to keep it moving. Following up, chasing responses, and navigating unclear communication becomes part of the experience.

One comment in the chat captured this reality clearly:

“It can be hard to get to the point of getting a final outcome letter… the amount of advocacy and chasing that needs to happen…”

Another highlighted how far removed the process can feel from everyday awareness:

“It takes far more than 12 months to even come into awareness…”

In response, the Ombudsman team acknowledged that delays particularly at the final response stage are common. They explained that in some cases, where delays are extreme, they may contact organisations directly, and they encouraged people to use their helpline for guidance when processes stall.

But even with that support, there was a sense in the room that the system places a significant burden on those trying to access it. By the time someone considers making a complaint, they are often already dealing with the aftermath of a difficult experience. Adding a lengthy and sometimes frustrating process on top of that can feel overwhelming.

The conversation also turned to accessibility. Questions were raised about language, digital access, and the assumptions built into how information is shared. Not everyone engages with systems in the same way, and not everyone finds it easy to navigate written guidance or formal processes.

Participants pointed out that some communities may never reach the complaints stage at all—not because issues don’t exist, but because the pathway itself is difficult to access.

This was reflected in a simple but powerful comment:

“We are assuming that everyone reads…”

There were also wider reflections about how systems could better meet people where they are, including:

  • making information available in more accessible formats and languages
  • reaching people through community networks, not just formal channels

Even within this practical discussion, the themes from earlier in the forum remained present. Trust, accessibility, and lived experience all shaped how people understood the complaints process.

Placed alongside the earlier presentations, this session added an important dimension. If the system fails as described in the discussions on racism and crisis care—then the ability to challenge that failure becomes critical. But if the route to accountability is difficult to navigate, many experiences may never be formally recognised.

What emerged was not a rejection of the Ombudsman’s role, but a recognition of the gap between what exists and what is accessible.

Because accountability is not just about having a process in place.
It is about whether people can realistically use it especially at a time when they may already be stretched, exhausted, and navigating multiple pressures.

Universal Care Plan and Carer Contingency Planning: A System Trying to Catch Up

The final contribution to the forum came from Thomas Ince, introducing the Universal Care Plan often referred to as UCP. After the earlier discussions on racism, crisis care, and accountability, this felt like a shift towards something more practical: what the system is trying to build in response to the gaps carers have been describing.

At its core, the Universal Care Plan is a digital tool designed to allow people to record and share information about their care. It sits within the NHS App and is intended to bring together health, social care, and voluntary services around a shared understanding of a person’s needs and preferences.

Thomas described how the system has evolved over time. It began with a focus on end-of-life care, making sure that a person’s wishes could be accessed quickly by professionals such as ambulance crews. It then expanded into areas like sickle cell crisis planning and is now being extended further to cover a wider range of conditions and situations.

The direction of travel is clear: moving from a professionally controlled system towards something more person-owned, where individuals can enter their own information and shape how their care is understood.

A Tool That Centres “What Matters to You”

One of the key features Thomas highlighted was a section within the plan that allows people to describe themselves in their own words. Rather than being defined only by diagnosis or clinical notes, individuals can record what matters to them information that can then be seen by anyone involved in their care.

In principle, this is a shift towards more personalised and human-centred care. It offers a way to capture context, preferences, and lived experience in a system that often reduces people to categories.

But for this forum, the most significant element was something more specific.

The Carer Contingency Plan

Thomas introduced a feature that immediately resonated with the group: the carer contingency plan.

This allows carers to record what should happen if they are suddenly unable to provide care. For example:

  • if they become unwell or need urgent medical attention
  • if there is a sudden change in their circumstances

In those situations, the system can alert professionals to the fact that someone is dependent on that carer and provide information about what support is needed.

For many carers, this addressed a very real and often unspoken concern:
what happens to the person they care for if something happens to them?

The idea that this information could be visible across services—rather than held informally or not at all felt like a meaningful step.

From Concept to Reality: The Challenge of Engagement

While the tool itself was broadly welcomed, the discussion quickly moved beyond what it does to how it will actually be used.

Thomas was open about the current stage of development. Although the system is available, it remains largely driven by professionals, with limited public awareness. One of the key aims now is to shift towards wider engagement encouraging people to take ownership of their care plans and input their own information.

This raised an important question in the room: how do you introduce a digital solution into communities where trust in services is already fragile?

Participants pointed out that many people particularly from ethnic minority backgrounds—do not engage easily with primary care systems. If the entry point to the Universal Care Plan is through those same systems, there is a risk that the people who could benefit most may not use it at all.

Suggestions began to emerge organically from the group, reflecting a more community-led approach:

  • working through carer centres, peer groups, and local networks
  • engaging cultural organisations and community leaders
  • using spaces where trust already exists, rather than relying solely on formal channels

There was a clear sense that communication could not be an afterthought. It needed to be built into the design of how the tool is introduced.

Language and Accessibility: A Tension Exposed

One of the most striking moments in this section came when language accessibility was discussed.

At present, the NHS App and therefore the Universal Care Plan is only available in English (and Welsh). Thomas acknowledged that this is a limitation and that while there are conversations about future solutions, no immediate changes are in place.

This prompted a strong reaction from participants. There was frustration that a tool described as “universal” could exclude large sections of the population from the outset. For some, this was not just a technical issue but a reflection of a wider pattern—systems being designed without fully considering the diversity of the communities they serve.

It brought the discussion back to a familiar theme from earlier in the forum:
inclusion cannot be added later, it has to be built in from the beginning.

A Step Forward With Conditions

Despite these concerns, there was recognition that the Universal Care Plan has real potential.

The idea of having:

  • shared, accessible information across services
  • visibility of carers and their responsibilities
  • a contingency plan that reduces risk in emergencies

addresses issues that carers have been raising for years.

But the conversation made it clear that the success of the tool will depend on more than its functionality. It will depend on whether people:

  • know about it
  • trust it
  • can access it
  • and feel that it reflects their needs and realities

Without that, there is a risk that it becomes another well-intentioned solution that doesn’t reach the people it was designed for.

Placing It in the Wider Conversation

Coming at the end of the forum, this presentation connected in an important way to everything that had been discussed earlier.

Where Saffron’s presentation explored the structural roots of inequality, and the KCL research showed how system delays affect people in crisis, the Universal Care Plan represented an attempt however early to respond to those issues in practice.

But it also revealed the ongoing challenge.

Because even when new tools are introduced, they are still shaped by the same system dynamics:
questions of trust, access, communication, and inclusion do not disappear they simply take new forms.

Involve Kent Carers’ Forum – 25th February 2026

By Matthew McKenzie

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

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

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

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

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

Arriving and the atmosphere

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

The purpose of the forum was clear:

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

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

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

My talk: Caring for someone with a mental health diagnosis

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

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

I shared:

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

I then shared a poem to promote carers rights

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

I encouraged carers to:

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

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

I also spoke about The Patient Carer Race Equality Framework

It exists because there is clear evidence of:

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

I spoke about how minority carers can face:

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

Discussion tables: Carers influencing change

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

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

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

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

Power of Attorney – protecting your voice

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

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

One key takeaway:

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

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

Citizens Advice & practical support

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

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

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

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

What stayed with me

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

It was:

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

These forums matter because carers matter.

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

Involve Kent (Carers’ Support – West Kent)

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

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

Carers Connect Southwark: Why Your Voice Matters More Than Ever

By Matthew McKenzie – A Caring Mind

If you’re an unpaid carer in Southwark, chances are you’re used to putting everyone else first. You support a loved one day in, day out, emotionally, practically, often invisibly. And too often, decisions about “support” for carers are made without carers truly being heard.

Southwark Council is developing its Unpaid Carers Strategy, and they are inviting unpaid carers to take part in upcoming focus groups to share real experiences, which are your lived reality.

As an unpaid carer myself, I know how rare and valuable this opportunity is.

Why having your say is important because

Policies and strategies shape:

  • What support is available
  • How easy (or hard) it is to access help
  • Whether carers feel recognised, supported, and understood

When carers don’t speak up, systems are built around us, not with us. When we do speak up, its a chance to make change becomes possible.

This isn’t about complaining.
It’s about being honest: what works, what doesn’t, and what would genuinely make life easier for carers in Southwark.

Your voice could help shape:

  • Better access to information and services
  • More flexible, carer-friendly support
  • A strategy that reflects the real pressures carers face

A safe, non-judgemental space

One of the most important things about these focus groups is that they are designed to be:

  • Non-judgemental
  • Inclusive
  • Open to carers with any level of responsibility

You don’t need to have all the answers.
You don’t need to be an “expert”.
You just need your experience.

Whether you care full-time, part-time, occasionally, or don’t even label yourself as a “carer” your perspective still counts.

Focus group dates and details

In-person focus groups
📅 24th February
⏰ 11am – 1pm and 2pm – 4pm
📍 Harriet Hardy Community Centre
Harriet-Hardy Building, Aylesbury Estate, Albany Road, Walworth SE5 0AH

Online focus group
📅 25th February
⏰ 7pm
💻 Virtual session via Microsoft Teams

How to get involved

You can:

Even attending one session can make a difference — not just for you, but for other carers now and in the future.

A personal note from me

As unpaid carers, we are often exhausted, overlooked, and expected to “just cope”. Opportunities like this don’t come around often.

National Ethnic mental health Carer Forum : November Update 2025

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:

  1. 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.
  2. 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:

  1. What about older adult Black communities?
    – Carers questioned how older Black adults, shaped by decades of racism, would be included in PCREF work.
  2. 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).
  3. 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:

  1. Is this “real” co-production or consultation?
    – Attendees challenged Sussex on whether the initial plan was created with the community or presented to them.
  2. How will service users and carers hold equal power within co-production?
  3. How will your anti-racism ambitions be demonstrated externally to communities?
    – Attendees expressed concerns that staff training alone does not reassure communities.
  4. 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:

  1. Do you provide information in languages other than English?
    – Carers stressed that if translations don’t exist, PCREF is inaccessible from the start.
  2. How will carers be supported to attend meetings given their unpredictable caring responsibilities?
  3. How will you gather demographic data for carers when many do not have Rio records?
  4. 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.

Shaping the Future of Support for Unpaid Carers in Lewisham

By Matthew McKenzie FRSA BEM – Triangle of Care community chair

As a carer living in Lewisham, I know just how important it is that our voices are heard and that the support available truly meets our needs. Whether we’re looking after a parent, a partner, a child, or a friend, we all share the same challenges balancing care responsibilities, work, our own wellbeing, and often feeling invisible in the process.

That’s why I wanted to share something that directly affects all of us. Lewisham Council and the NHS South East London ICB are currently developing a new Action Plan for Unpaid Carers (2025–2028). This plan will set out how the Council aims to identify, value, and support more carers over the next few years.

The team leading this work, including a new member who recently joined the Adults Integrated Commissioning Team, is reaching out to carers across the borough to get our feedback.

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Ethnic mental health Carer Forum : October Update 2025

By Matthew McKenzie, Facilitator, National Ethnic Mental Health Carer Forum

Introduction: A Forum that Connects and Challenges

As the facilitator of the National Ethnic Mental Health Carer Forum, I never take for granted how special these sessions are. Each month, carers, professionals, and researchers from all over the UK log in to share knowledge, raise awareness, and push for change in how mental health services understand and support ethnic minority communities.

Our October 2025 session was a powerful one. Falling on the last day of Black History Month, it brought together crucial themes on race equality, co-production, research, and carer visibility.

We heard from two key areas shaping mental health equity right now:

  • The OSMOSIS Project, led by Dr. Jacqueline Sin and Sharon Galliford, focusing on developing social care-based support for carers of people with psychosis.
  • The Patient and Carer Race Equality Framework (PCREF), presented by Aboobaker Bhana, Equality and Involvement Manager for South West Yorkshire Partnership NHS Foundation Trust.
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How Racism Affects Black and Minority Communities and Why Mental Health Services Must Help Lead Change

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.

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Black History Month: Standing Firm in Power and Pride

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.

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What Makes for Meaningful Carer Involvement?

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.

Continue reading →

Ethnic mental health Carer Forum Update August 2025

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:

  1. How can Carers Trust ensure its research explicitly names racism rather than using softer language?
  2. What specific support can be offered to carers who do not self-identify as carers and miss out on benefits?
  3. How can Carers Trust improve its complaints handling processes, particularly for carers facing racism and discrimination?
  4. What role can MPs and lobbying groups play in supporting Carers Trust’s advocacy for ethnic minority carers?
  5. 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:

  1. How will PCREF specifically address the needs of older Black adults who often feel invisible in services?
  2. 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?
  3. How will the trust prevent the public misconception that PCREF “excludes” white people?
  4. What mechanisms are in place to ensure transparency and accountability in publishing progress updates?
  5. 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.

For more details you can contact her at S.Musabayana.1@research.gla.ac.uk

Carers’ Experiences of Benefits and Support

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.