Tag Archives: mental health policy

National Ethnic mental health Carer Forum : March Update 2026

If you weren’t able to join us for this month’s online forum, you missed a deeply insightful session packed with research updates and honest conversations. As a carer myself, I know how hard it is to find time for these meetings, so I’ve put together this expanded summary to keep you in the loop on the vital work being done for our community.

Meeting Agenda

  • Welcome and Intro: The role of the Patient Care Race Equality Framework (PCREF).
  • Speaker 1: Brenda Hayaka (King’s College London): Findings on ethnic inequalities in healthcare and the new “Interception” study.
  • Q&A Session: Addressing dementia stigma, medication, and language barriers.
  • Spirituality & Faith: Insights from Tuulia Castledine (Chaplain at SWLSTG) on recovery and holistic care.
  • Speaker 2: Becky Forster (University of Southampton): Supporting carers facing harmful or upsetting behaviors.
  • Local Advocacy: Healthwatch Croydon’s role in gathering carer feedback.
  • Closing: “Rooted and Growing” (A PCREF poem).

Key Speaker: Brenda Hayaka – The Interception Project

Brenda shared findings from her previous work on ethnic inequalities and introduced her new study on Multiple Long-Term Conditions (MLTCs).

Brenda Hayaka opened her keynote by sharing the heart behind her work on ethnic inequalities in healthcare. Drawing on her previous research, she described how minoritised ethnic patients and their carers often face significant challenges navigating multiple long-term conditions (MLTCs) with little support or recognition. She emphasized that while global interventions exist for conditions like diabetes and depression, there is a notable gap in UK-based research specifically addressing MLTCs in minoritised communities. This “major evidence gap” became the driving force behind her current study, The Interception Project.

What the Research Shows:

  • Systemic Disadvantage: Minoritized ethnic groups are disadvantaged from the development to the management of multiple conditions.
  • Poor Continuity of Care: Many experience poor therapeutic relationships with practitioners.
  • The UK Evidence Gap: While interventions for depression and diabetes exist globally, Brenda found zero studies specifically targeting MLTCs for minoritized groups within the UK healthcare system.

The “Interception” Study:

The Interception Project uses a creative and collaborative method called journey mapping to trace the lived experiences of patients and unpaid carers. Brenda explained that this approach goes beyond merely collecting data: it seeks to identify the pathways people take when seeking help, the barriers they encounter, and the moments where the healthcare system fails them. By listening deeply and reflecting these experiences back to communities, the research provides actionable insights into improving care quality and equity. The study is expanding beyond London to include Coventry and Manchester, recognizing that every community has unique strengths, challenges, and solutions.

Brenda highlighted that a central aim of the project is to co-create actionable recommendations with communities. These recommendations are intended for NHS leaders, commissioners, and policymakers, ensuring that the voices of carers and patients directly inform service design and delivery. She also spoke about the role of trusted community leaders in building access and overcoming barriers such as language differences, mistrust of institutions, and cultural stigma around certain health conditions. Faith communities, she noted, can play a crucial role not only as support networks for participants but also as partners in research, data collection, and advocacy for change.

Throughout her presentation, Brenda emphasized that understanding the journey of carers and patients requires attention to both systemic and relational factors. Minoritised ethnic groups often experience disadvantages in developing and managing multiple conditions, and poor continuity of care can weaken therapeutic relationships with practitioners. By documenting these experiences in detail, the Interception Project aims to fill the evidence gap and provide a roadmap for more equitable, culturally sensitive care. Brenda closed her keynote by reminding attendees that meaningful equity in healthcare begins when previously invisible experiences are recognized and acted upon—a call to transform insight into change.

Spirituality in Care: Forum Introduction by Matthew McKenze

I had the honor of opening the spirituality segment of the forum, emphasizing the vital role that faith and cultural practices play in supporting carers and patients from minoritised ethnic communities. I framed the discussion around the idea that mental health care cannot be fully effective unless it recognizes the whole person, including their spiritual and cultural identity. I highlighted that carers often draw strength, resilience, and meaning from their faith, and that this dimension is frequently overlooked in traditional mental health services.

I encouraged participants to consider spirituality not as an abstract concept, but as a tangible resource that can inform recovery, foster belonging, and enhance coping strategies. By acknowledging spiritual needs, mental health providers can build trust with communities that have historically experienced marginalization or misunderstanding within healthcare systems. I also set the tone for an open and reflective conversation, inviting attendees to share experiences, insights, and challenges related to integrating faith and mental health support.

By positioning spirituality as both a personal and systemic consideration, the forum aimed to explore how services can better engage with faith perspectives in a respectful, inclusive, and practical way. This introduction laid the groundwork for Tuulia Castledine’s keynote, which delved deeper into the spiritual tools and frameworks that support carers and patients in their mental health journeys.

Spirituality in Care: Insights from Tuulia Castledine (SWLSTG)

We were joined by Tula, a Chaplain from South West London and St George’s (SWLSTG), who led a vital discussion on the spiritual dimension of mental health.

Tuulia highlighted that for many carers and patients, faith is not just a personal practice but a framework through which they make sense of mental health crises. Spirituality often provides a lens for understanding why challenges occur and offers a source of hope, helping individuals navigate uncertainty with resilience.

Beyond offering meaning, Tuulia explained that spirituality can serve as a practical tool in recovery. It provides a “language for recovery” that allows carers and patients to express experiences and emotions that might otherwise be difficult to articulate. This sense of connection fosters belonging and strengthens the psychological resources people draw upon when coping with mental health challenges.

Tuulia also stressed the importance of services adopting what she called “spiritual curiosity.” Mental health professionals are encouraged to engage openly with faith perspectives rather than making assumptions or ignoring them. By integrating spirituality into holistic, person-centered care, services can better meet the needs of minoritised ethnic communities.

Finally, Tuulia highlighted a critical concern: when services fail to acknowledge faith, they risk deepening the mistrust that many minority communities feel toward mental health providers. Recognizing and valuing spiritual needs, she emphasized, is not just compassionate—it is a crucial component of equitable care, fostering trust, understanding, and more effective therapeutic relationships.

Summing up Tuulia’s talk

  • Making Sense of Illness: For many, faith is how they make sense of why a crisis is happening and where they can find hope.
  • A Tool for Recovery: Spirituality provides a “language for recovery” and can build resilience and a sense of belonging.
  • Moving Beyond Assumptions: Tula emphasized that services need to show “spiritual curiosity” and include faith as part of holistic, person-centered care.
  • The “Mistrust” Gap: When services ignore faith, it can deepen the mistrust minority communities feel toward mental health providers.

Carer Voice: Questions & Feedback

The Q&A session was one of the most powerful segments of the forum, offering an unfiltered view of the real-world barriers faced by carers and minoritised ethnic communities. Participants shared candid experiences, highlighting gaps in current mental health support and pressing for practical solutions.

A professional opened the discussion by addressing the critical issue of language and access. She pointed out that many research projects and healthcare initiatives fail because they do not allocate adequate resources for language interpretation or accessibility for disabled individuals. Without these provisions, vital services and studies inadvertently exclude those who may benefit most, leaving carers and patients marginalized.

A carer contributed a particularly thought-provoking critique regarding medication versus conversation. He challenged the system on why Black men are often prescribed stronger medication for longer periods rather than being offered meaningful dialogue and psychosocial support. This raised an important conversation about the need for culturally sensitive approaches to treatment that value listening, understanding, and relationship-building alongside pharmacological intervention.

The unpaid carer also highlighted the challenge of dementia stigma within older generations of minoritised communities. He described how deeply ingrained cultural perceptions can make it difficult for families to seek early support or even acknowledge the condition, creating additional stress for carers. The discussion emphasized that tackling stigma requires both education and culturally attuned engagement, alongside support networks that respect the values and experiences of carers and patients.

A mental health professional from another mental health NHS trust added a vital perspective on community engagement and trust-building. He emphasized that carers often encounter inconsistent communication from services and a lack of culturally informed support, which can leave families feeling isolated and unsupported. He urged healthcare providers to work more closely with community leaders, faith groups, and carers themselves to co-design services that truly respond to the specific needs of minoritised ethnic communities.

Overall, the feedback session underscored that systemic improvements must be informed by the lived experiences of carers. Their insights illuminated the gaps between policy, research, and practical care, reminding the forum that real change is rooted in listening to and amplifying these voices.

Support for Carers in Crisis

Becky Forster introduced a deeply important new study funded by Marie Curie, focusing on carers who find themselves in extremely challenging and sometimes frightening situations. The research aims to better understand the experiences of carers who have faced harmful, aggressive, or abusive behaviors from the person they care for, particularly at the end of life. Becky emphasized that these situations are often overlooked in traditional guidance, leaving carers without the support or strategies they need to cope safely and effectively.

The study seeks to gather real-life experiences from carers, acknowledging that their insights are invaluable in shaping practical and compassionate guidance for healthcare providers. Becky explained that the goal is not only to document these difficult experiences but also to translate them into actionable tools and recommendations for the NHS, ensuring that carers receive timely support, protection, and training when dealing with complex end-of-life care scenarios. By centering the voices of those who have lived through these crises, the project hopes to reduce isolation, increase safety, and enhance the wellbeing of carers facing some of the most emotionally and physically demanding circumstances.

Becky encouraged attendees to participate and share their stories, reassuring them that contributions would remain confidential and that their experiences could directly influence policy and practice. This initiative highlighted the critical need for systemic recognition of carers’ emotional and practical needs, ensuring that they are not left to navigate trauma and stress alone. The session reinforced that understanding, guidance, and compassionate support are essential for carers’ resilience and for providing safe, dignified care to those at the end of life.

Croydon Healthwatch

We concluded the forum with an important reminder from Anna of Healthwatch Croydon, who emphasized that anyone in England has the right to provide anonymous feedback on their care. Anna highlighted that this is more than a formal process, it is a powerful tool for carers, patients, and communities to have their voices heard. By sharing experiences of both excellent and inadequate care, individuals can directly influence how services are shaped, highlight gaps in provision, and push for improvements where they are most needed.

Anna also underscored that feedback plays a crucial role in holding policymakers and healthcare leaders accountable. When carers and patients report their experiences, patterns of inequality, or systemic barriers, it creates evidence that decision-makers cannot ignore. This feedback is particularly vital for minoritised ethnic communities, where historical mistrust and underrepresentation have often left issues unaddressed. She encouraged all attendees to see feedback not as a bureaucratic exercise, but as an instrument of empowerment, helping to drive change at both local and national levels.

I closed the session with my poem “Rooted and Growing,” celebrating that we don’t have to lose our identity to get the care we deserve.

Matthew McKenzie

Mental Health Carer & Forum Chair

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.

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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Ethnic mental health Carer Forum Update March 2025

The Importance of Ethnic Minority Mental Health Carer Voices: Empowering Unpaid Carers from the Global Majority by Matthew McKenzie

In today’s world, the voices of ethnic minority carers in mental health services must be heard and valued. The National Ethnic Mental Health Carers Forum meeting, held on March 28, 2025, underscored the vital role that co-production and lived experience play in shaping better services for those who care for loved ones with mental health needs.

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