Tag Archives: Inclusive Healthcare

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

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

Ethnic mental health Carer Forum Update June 2025

By Matthew McKenzie – Carer activist, poet and author

Welcome to a brief update of my ethnic mental health carer group, held monthly.

The meeting began with introductions and technical discussions on connecting to zoom, followed by presentations on research related to mental health care and carer support, particularly focusing on minority communities and paranoia. The group discussed various initiatives including a community intervention study, a carer experience questionnaire, and progress updates on Patient Carer Race Equality Framework reporting across different NHS regions. The conversation ended with discussions on challenges faced by minority carers, including access to mental health services and the need for better support systems, with calls for national collaboration and improved respite services.

Summary

Carer Support Network Expansion Discussion

The meeting began with Matthew introducing the session and addressing technical issues faced by some participants, including a participants video problems, which were resolved. Matthew explained his recent laptop issues and mentioned his involvement with Carers Trust regarding Triangle of Care. The group discussed the expansion of their focus with minority carers and the importance of connecting and networking across the UK. Juliana, a researcher, provided an overview of her work, and participants introduced themselves, sharing their roles and experiences related to mental health care and carer support. The conversation ended with a brief overview of upcoming presentations and discussions.

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Ethnic mental health Carer Forum Update May 2025

Quick update on ethnic mental health carer group

The meeting focused on carer involvement and representation across different regions, with participants discussing their roles in supporting carers and addressing discrimination. The main focus for this meeting was on “What does good look like?” when it comes to Triangle of Care and PCREF.

The group explored the Triangle of Care initiative and its five key elements, including discussions about medication-related challenges and the need for better communication between healthcare providers and carers. The conversation ended with conversations about improving carer support systems, including the importance of advocacy, training, and creating safe spaces for carers to share concerns confidentially.

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National Triangle of Care Community meeting – March 2025

By Triangle of Care community chair Matthew McKenzie FRSA BEM

For the month of March, unpaid carers, NHS professionals, and key stakeholders came together for another Triangle of Care National Community Meeting, which is a powerful space of collaboration, reflection, and shared purpose. Chaired by Matthew, the meeting spotlighted significant developments in carer engagement, mental health service standards, and equity frameworks across the NHS.

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The Importance of Promoting Expert by Experience Ambassadors

Welcome to this blog by Cygnet Carer Ambassador Matthew McKenzie. As a carer ambassador, I strongly believe that those in similar roles who representing families and carers within healthcare and mental health services, should have maximum visibility and reach. This ensures that not only service users but also their carers receive the support and information they need.

On the 19th of March, I had the opportunity to visit Cygnet Millbank for a filming session where I shared my thoughts and messages aimed at families and carers with loved ones using Cygnet’s services. This initiative followed Cygnet’s Patient Carer Race Equality Framework event launch, a commendable effort to enhance outcomes for individuals from diverse communities.

During the filming, I was joined by fellow Carer Ambassador Julian de Takets. Together, we explored ways to strengthen the connection between families and carers and the services supporting their loved ones.

In my segment, I spoke about my role in representing, supporting, and advocating for carers. My work involves ensuring that carers’ voices are heard, offering guidance, and contributing to the development of inclusive, culturally competent services that genuinely address carers’ needs.

However, to make a real impact, it is vital that these messages reach the right audiences. Without effective promotion and engagement, our efforts as carer network ambassadors risk being limited in influence.

Families and carers play a fundamental role in supporting their loved ones’ recovery journeys, yet many feel overlooked or uncertain about how to navigate the mental health system. This is why mental health providers must actively promote and support the work of carer ambassadors. By amplifying our reach, healthcare organizations like Cygnet can ensure that carers feel seen, heard, and valued as equal partners in care.

As an ambassador, I see my role as a bridge between carers and mental health services, offering guidance and ensuring they have access to the right resources and support networks.

I look forward to seeing the completed videos off Cygnet’s website and hope that they serve as a valuable resource for families and carers. More broadly, I urge mental health services to not only establish ambassador programs but also to actively promote them, ensuring that Expert by Experience voices are at the heart of shaping and improving care services.

Carers and families deserve recognition, support, and inclusion in the mental health care process. By championing ambassadors and giving them a wider platform, we can create a more informed, connected, and supportive community for all involved.