Tag Archives: mental health

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.

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.

Greenwich Mental Health Carer Forum — November 2025

On a brisk November afternoon, unpaid mental health carers across Greenwich gathered once again, not just to share experiences, but to seek answers, influence services, and strengthen community. Facilitated by long-time carer advocate Matthew McKenzie, the forum brought together carers, relatives, professionals, and two guest speakers from Oxleas NHS Foundation Trust.

As I explained when opening the meeting, the purpose of the forum is twofold connection and influence:

November’s session featured two speakers:

✅ Speaker 1 — Lorraine Regan

Director for Community Mental Health, Learning Disabilities & Autism, Oxleas NHS Foundation Trust

✅ Speaker 2 — Janice Williamson

Carer Involvement Lead, Oxleas NHS Foundation Trust

Both provided insight into service pressures, carer involvement, policy development, training, assessments, and support improvements happening across the trust.

Speaker Introduction — Lorraine Regan

Lorraine opened by introducing her background and role:

Continue reading →

Reflections from the Royal College of Nursing PSI Alumni Conference 2025 – A Carer’s Perspective

Arriving and Opening Reflections

Walking into the RCN PSI Alumni Conference at Cowdray Hall on that crisp November morning, I felt a mix of pride, gratitude, and curiosity. It’s been many years since I first began speaking at RCN events like this, yet every time feels new because each gathering brings together nurses, carers, service users, and leaders who continue to shape the future of mental health care.

Before I continue to describe the event, let me sum up the Royal College of Nursing PSI programme. Basically the Psychosocial Interventions (PSI) programme is a nationally recognised training initiative designed to strengthen therapeutic skills of mental health professionals and embed recovery-focused, relationship-based care across services.

The PSI program is rooted in the principles of collaboration, reflection, co-production and empowerment, PSI equips practitioners with practical tools to support individuals experiencing mental distress, while also valuing the insight of carers and families.

I think what makes PSI stand out is its emphasis on seeing people beyond their diagnosis and fostering empathy, curiosity, and shared understanding between nurses, service users, and carers.

At the start of the conference and during it, I spoke to a few nurses over coffee, each reflecting on how PSI had shaped their practice one mental health nurse told me it had helped her “find her voice again.” For me, as a carer with lived experience, it was great to witness this sense of renewal. It reminded me why collaboration between professionals and lived experience communities is so essential.

Around 10 a.m., Catherine Gamble formally opened the event, setting a tone of gratitude and shared learning. Her introduction reminded us how much the alumni network had grown and how lived experience was now firmly part of the PSI culture.

As someone with lived experience of caring for my mum, who lived with schizophrenia, I approached the events not just as an observer but as someone deeply invested in the stories and struggles that bring us together as a triangle.

When I was invited to open the event and share my reflections as a carer, I knew I wanted to do more than talk about carers, I wanted to speak for them, and with them.

My Opening Talk – “The Nurses Who Walk With Us”

Standing at the podium, looking out at rows of passionate mental health nurses and lived experience, I began with gratitude. My words were simple but heartfelt:

“This is really about the nurses who walk with us, the ones who move beyond the labels, beyond the charts, and see the person, not the problem.”

I read a poem I had written to honour the compassion and resilience of those in the room a piece I called The Nurses Who Walk With Us.

The poem spoke about presence, about listening, and about the small acts of care that ripple into great change.

After my talk, I was moved by the warmth of the response. Many came up to share how my words mirrored their experiences or reminded them of why they came into nursing. That moment of connection that shared understanding set the tone for the day.

The Locksmiths Animation and Alumni Showcase

Following our opening session, Ellie Gordon and Stephen Jones launched the new animation “We Are the Locksmiths.” The film poetically portrayed mental health nurses as key-cutters shaping, adapting, and helping people find the right fit for recovery.

Watching it, I was struck by how accurately it captured the emotional labour of care, the balancing of vulnerability, patience, and professionalism

Next we had the Mentimeter session that morning, which was led by Professor Sally Hardy. She guided participants through reflective wellbeing questions using the interactive Mentimeter tool, encouraging everyone to think about how to sustain personal and professional wellbeing in mental health practice. Sally’s session wasn’t just about gathering feedback

Afterwards, the Alumni and Facilitators’ “Show and Tell Time” began. Groups from Sheffield NHS Trust, Sussex Mental Health Partnership, Lancashire Mental Health NHS trust, and Hereford NHS Trust sharing creative projects and reflections from their PSI practice. There were posters, poems, and community initiatives that had grown directly from the training. I wandered around the tables, speaking with participants who described how PSI had changed their teams. I think One mental health nurse told me, “We stopped seeing interventions as techniques and started seeing them as relationships.” It was inspiring

Workshop One – Working Together in Risk and Safety

After refreshments, we broke into workshops. I joined Workshop One: Lived Experience and Co-Production – Utilising Our Expertise, led by Hannah Cadogan and colleagues. It was energising to see lived experienced and mental health nurses working side by side.

I spoke about what co-production really means from a carer’s point of view. I shared my journey as someone who has cared for a family member living with schizophrenia and another with autism, and how those experiences taught me the importance of being included as an equal partner in care.

I explained that carers often hold a deep understanding of the person they support insights that can make a real difference if professionals take the time to listen and involve us from the start, not as an afterthought. Drawing on my work with Carers UK, the Carers Trust, and the Triangle of Care as many nurses from the mental health trusts were members of triangle of care programme., I spoke about how true co-production is built on trust, openness, and shared learning.

We discussed barriers time, fear, power differences but also solutions, like embedding co-production in supervision and reflective practice.

In this session, the discussion turned to how we can meaningfully involve carers and service users in planning safety not as tick-box exercises, but as genuine collaborations. I found myself reflecting on my own experiences of sitting in meetings where decisions were made about my mum rather than with us.

Hearing the nurses speak so openly about their challenges about time pressures, fear of getting it wrong, and the emotional toll of risk reminded me that we’re all human in this process. True co-production means sharing not only responsibility but also vulnerability.

One participant spoke about the importance of patience: “We’re not here to fix; we’re here to find a way in.” That line stayed with me. It echoed my own philosophy that care starts with listening, not solving.

By the end of the workshop, we agreed that co-produced safety isn’t about removing risk; it’s about building trust so we can face risk together.

Workshop Two – Co-Production and Carer Involvement

Lunch provided another opportunity for networking. The Mental Health Forum stand and MHP stall displayed resources on psychosocial practice.

I met others who had recently completed the course.

Conversations were open, curious, and full of mutual respect the kind of professional empathy that sustains hope in challenging work.

After lunch we heard from Professor Nicola Ranger, RCN General Secretary, who welcomed everyone back, commending the alumni for sustaining PSI’s legacy. Her words “you are the custodians of compassion” perfectly captured the spirit of the day.

The evaluation session of the RCN PSI Alumni Conference was presented in partnership with London South Bank University (LSBU), who have been key academic collaborators in examining the outcomes and long-term impact of the Psychosocial Interventions (PSI) programme. This section was introduced by Stephen Jones, and Professor Chris Flood, a leading figure in mental health nursing and research at LSBU.

Together, they outlined how LSBU’s evaluation seeks to capture not just the quantitative outcomes of PSI such as improved confidence and competence among practitioners but also the qualitative stories of change, growth, and compassion that the alumni community embodies.

There will be several teams at LSBU, but I was impressed on the make up of the Advisory and Supervisory Team provides academic oversight and strategic direction.

  • Professor Patrick Callaghan, Professor of Mental Health Science at LSBU, offers extensive expertise in psychosocial interventions and nursing research leadership.
  • Professor Chris Flood, a leading mental health and adult nurse researcher, specialises in health economics, survey design, and qualitative inquiry.
  • Professor Neil Brimblecombe, Professor of Mental Health and Learning Disability, contributes his expertise in workforce development, nurse prescribing, and policy analysis linking the PSI evaluation to broader NHS workforce strategies.
  • Professor Eddie Chaplin, an expert in intellectual disabilities and psychosocial interventions, supports the development of inclusive frameworks for peer support, guided self-help, and service co-production.

Afternoon workshop

In the afternoon, I attended Workshop Three: Working Together in Risk – Co-Production, Suicide and Personalised Safety. It was deeply emotional. We discussed how carers can be crucial in early warning and safety planning, but only if professionals create safe spaces for them to speak. The workshop was presented by Berkshire Healthcare NHS Foundation Trus

During the workshop, we took part in reflective exercises that encouraged us to consider what “shared safety” truly means. We were asked to think of times when communication broke down between families, patients and professionals, and how different outcomes might have been possible if trust and collaboration had been stronger.

Celebrating Archievements

Those who finished the RCN PSI programm were presented with a RCN PSI alumni badge, which i felt was a small but powerful symbol of commitment, compassion, and continued learning. For many, receiving that badge wasn’t just about completing a programme; it represented belonging to a network that values empathy, partnership, and the courage to keep improving mental health care together.

Reflections and Looking Ahead

As the day drew to a close, we took a quiet moment to reflect. Conferences like this are not just about learning they are about belonging. They remind me that, while the caring role can often feel isolating, there is a wider network of understanding and solidarity.

I missed out a lot more that took place at the alumni event, but watch out for more exciting news from the RCN in future.

To find out more about the RCN PSI Progamme, click link below.

https://www.rcn.org.uk/Professional-Development/Educational-programmes-and-services/Psychosocial-Intervention-Programme

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 →

Reflections from King’s Mental Health Fair 2025 – A Carer’s Perspective

By Carer Activist – Matthew McKenzie

Today, I had the privilege of being part of King’s College Hospital NHS Foundation Trust’s Mental Health Fair, held on Thursday 2nd October, in recognition of World Mental Health Day 2025.

The event brought together a wide range of organisations and community groups working tirelessly to support the mental health and wellbeing of patients, families, and carers.

Why carers need to be at the heart of mental health conversations

As someone who has cared for a loved one experiencing mental health challenges, I know firsthand the importance of recognising and supporting carers through the groups i run.

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Understanding Community: The Foundation of Connection

By Matthew McKenzie – A Caring Mind

Community is a word we hear often, but its true meaning and significance can sometimes be overlooked. At its core, a community is a network, a web of relationships built on shared identity, common themes, and mutual trust. Communities are formed when people come together, united by a sense of belonging and shared responsibility. This sense of belonging is not just about being part of a group; it’s about feeling valued, having a purpose, and working towards common ideals.

This blog is a transcript of the video below.

Communities exist in many forms. The most immediate and intimate is the family, where the seeds of unpaid caring are often sown.

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Ethnic mental health Carer Forum Update July 2025


Author: Matthew McKenzie

Building Stronger Voices: A Powerful July Gathering of the National Ethnic Mental Health Carer Forum

On Friday, July 25th, the National Ethnic Mental Health Carer Forum held another online session, continuing our work in empowering diverse carers and influencing meaningful change across mental health services. With participation from community champions, NHS professionals, experienced unpaid minority carers. The discussion was on the Triangle of Care (ToC) and PCREF (Patient Carer Race Equality Framework) stakeholders.

This forum exists to elevate the voices of ethnically diverse carers, bringing their lived experiences to the forefront of service transformation. Whether it’s holding systems to account or shaping policy guidance, this space remains vital in creating inclusive, anti-racist care across the UK.

Highlights from July’s Forum

🔵 Debbie Hustings’ Presentation on Triangle of Care & PCREF Integration
Debbie, a long-standing Triangle of Care Programme Lead and carer herself, gave an in-depth presentation on reviewing the Triangle of Care through a PCREF (Patient and Carer Race Equality Framework) lens. Her talk provided an honest look at institutional challenges and offered solutions for embedding racial equity into carer support standards. A key takeaway was how crucial lived experience is in driving real policy change not just warm words. She emphasized the importance of re-examining existing standards through a racial equity lens, stating that “beyond warm words,” carers need frameworks that are operational, measurable, and locally adaptable.

🟣 Powerful Feedback from Carers
Contributors shared difficult yet necessary truths. Carers spoke about the lack of involvement in care planning, systemic racism, the need for meaningful co-production (not “faux-production”), and experiences of isolation when navigating majority environments. One carer reflected, “In 28 years of caring for my son, I have never been involved in his care planning.”

Several carers shared their painful, sometimes shocking, experiences navigating mental health services, especially in areas with limited diversity. One participant remarked, “Even after decades of caring, I’ve never been included in a care plan.” Others spoke of staff who misunderstood or dismissed cultural nuances, the misuse of confidentiality rules to exclude carers, and the silencing of Black and Asian voices. Concerns were also raised about immigration-related fears, lack of access for non-English speakers, and a troubling rise in racism in predominantly white areas. These reflections painted a vivid picture of systemic inequality but also made clear the power of collective advocacywhen carers come together, change begins.

These testimonies highlighted how far we still need to go.

🟡 Inclusive Language & Representation
There was a passionate discussion around terminology whether to use “global majority” or “ethnically and racially diverse.” While some feared backlash from certain communities, the group leaned toward inclusivity and accountability over appeasement. This sensitivity around language underlines the forum’s thoughtful and intersectional approach.

🟢 The Work Ahead
Debbie shared the next steps in developing Standard 2 of the Triangle of Care through the PCREF lens: staff training. The goal? Mandatory, culturally safe, anti-racist care awareness education co-produced with carers from diverse backgrounds. By April 2026, the guidance will be finalized, field-tested, and launched nationally.

A Forum of Global Carers, Local Action

This month’s session proved again that our forum is more than discussion as it’s a driving force for equity. Participants from Southampton, Lewisham, Pennine, Norfolk, Leicester, South West London, Kent & Medway and beyond all shared insights into their local efforts, including cultural awareness training, community storytelling projects, and carer-led involvement initiatives.

One key message? Change is possible when carers are part of the conversation—not as guests, but as co-leaders.

Want to Get Involved?

The forum is open to carers and professionals across the UK and beyond. We meet monthly online, and everyone is welcome to join, contribute, or simply listen.

For bookings or questions, contact me at info@caringmindblog.com
📱 Or download and scan the QR code in the flyer above

Together, minority mental health carers can shape a mental health system that sees, hears, and supports all carers—ethnically, culturally, and fully.

Next National MH carer forum in August 29th 10:30 am
Matthew McKenzie
Founder – Caring Mind Blog
Facilitator – National Ethnic Mental Health Carer Forum

South West London Mental Health carers group update for June 2025

A Space to Share, a Space to Be Heard

The session opened with updates and heartfelt check-ins. One of our carer members, shared a deeply personal and challenging situation regarding her loved ones declining mental and physical health. Despite strained family dynamics and the emotional burden of caring, a carer is courageously advocating for her loved one and seeking support through nursing services and assessments.

Peer Support: Insights from Experience

Long-time members offered valuable perspectives from their own journeys. A carer shared their struggle supporting individuals, which showed a stark reminder of the emotional and logistical toll caring can take. Another carer encouraged fellow carers to prioritise their own well-being, even in small ways a cup of tea, a short walk, a moment to breathe.

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Greenwich Mental Health carers forum update June 2025

Why Unpaid Carers Should Join Our Mental Health Carers Forum and Why Oxleas & Our Local Authorities Should Listen

By Matthew McKenzie

Caring for a loved one with mental health needs is a journey full of challenges, isolation, and too often lack of support. That’s why we run a dedicated Mental Health Carers Forum with Greenwich Carers Centre that brings together unpaid carers from across Greenwich and sometimes other boroughs since Oxleas covers Bromley and Bexley.

In our most recent forum, carers opened up about what it’s really like to navigate services and support their loved ones. The message was clear: unpaid carers are doing more than ever often alone and we need to work together to make sure they are not left behind.

The Power of Peer Support

One carer said:

“I’m a sandwich carer — looking after my elderly parents and my daughter with complex needs. Groups like this are a lifeline. It’s a space to share, learn, and recharge.”

For many carers, peer support is one of the few places where they are truly heard. Another participant explained:

“It helps so much to hear from others going through similar things. It’s the only way I know what services are available and what’s changing.”

Challenges That Carers Face

Through the forum, we heard repeated concerns:

  • Lack of joined-up care between GPs and mental health services
  • Delays in care planning and assessments — or carers being excluded altogether
  • Confusing systems — carers are often left chasing up GPs or social workers themselves
  • Failure to take carers’ expertise seriously in assessments and planning
  • Emotional strain — many carers at breaking point, needing better respite and emotional support

One mother of three autistic children shared:

“I told them my son cannot tolerate bright light that’s why the curtains were drawn. But the assessor just complained about the curtains and parking. They didn’t listen to what my son really needs.”

Presentation: Advocating for a Loved One During and After Mental Health Crisis

Matthew McKenzie delivered a detailed presentation on how unpaid carers can effectively advocate for their loved ones, particularly around mental health services.

Key points included:

  • Carers are not just supporters, they are also advocates for their loved ones
  • Building relationships with key professionals (GP, care coordinator, psychiatrist, social worker) is crucial
  • Carers should keep records of symptoms, interventions and communications to support advocacy
  • During a crisis, carers should:
    • Stay calm
    • Be factual about symptoms and risks
    • Be assertive (but respectful) in requests for urgent action
    • Request risk assessments and ask for information to be recorded
    • Understand confidentiality rights and use carers’ rights under the Care Act
  • The importance of self-care for carers, advocacy can be exhausting, and carers must seek peer support and breaks
  • Carers should also use the complaints process and escalate concerns when services fail

A Call to Oxleas NHS and Local Authority

We know big changes are coming, NHS England reorganisations, funding pressures, staff reductions. But one thing won’t change: the system depends on unpaid carers.

That’s why we urge Oxleas NHS Trust and the local authorities to:

✅ Regularly engage with this forum to hear carers’ voices
✅ Ensure carers are meaningfully included in care plans and reviews
✅ Offer more training and support for staff on carer involvement
✅ Improve clarity on who carers can contact in a crisis
✅ Work with us to strengthen co-production, not just in theory, but in practice

As one member put it:

“If the services won’t be there in full anymore — then carers will have to do even more. But we can’t do it if we’re broken.”

Join Us

If you’re an unpaid carer supporting someone with mental health needs, whether you’re new to caring, or have years of experience, please come along.

You’ll find a space to share, learn advocacy skills, and connect with others who truly understand. We also run a peer WhatsApp group, ask if you’d like to join.

Together we are stronger and louder. The more carers attend, the harder it is for services to ignore us.

For more info or to attend the next forum: contact

info@greenwichcarers.org
0300 300 2233