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

A New Study Giving Voice to Carers Experiencing Domestic Abuse

Caring for a loved one at the end of life is often described as an act of compassion and dedication. But for some carers, this role comes with a hidden and deeply challenging reality, experiencing domestic abuse from the very person they are supporting.

A new research project led by the University of Southampton is shining a light on this often overlooked issue. The study aims to understand what it is like to experience domestic abuse in a caring relationship, particularly when the person receiving care is seriously ill or nearing the end of life. It also seeks to explore what kinds of support carers need, and how health and social care services can respond more effectively.

This project brings together carers, professionals, and experts to share experiences and co-design practical guidance that could improve support systems and overall wellbeing for carers. By listening directly to those affected, researchers hope to create meaningful change in how services identify and respond to abuse in caregiving situations .

If you are a carer who has experienced domestic abuse or a professional working in health or social care, your insights could make a real difference. Taking part in the study is an opportunity to help shape better support for others facing similar challenges.

To learn more or get involved, you can contact the research team at ceda@soton.ac.uk or call 023 8059 7581.

Your voice matters. By sharing your experience, you can help build safer, more supportive care environments for everyone.

Stress Awareness Month 2026 – Tips for Unpaid Carers

By Matthew McKenzie – Carer activist

April is Stress Awareness Month 2026 in the UK, and this year’s theme is #BeTheChange – Small Actions, Big Impact. In the video below, Matthew McKenzie, carer activist, shares practical stress management tips specifically for unpaid carers who are supporting loved ones while managing their own wellbeing.

Learn how small, consistent actions can reduce stress, improve mental health, and make a real difference in your daily life. I also highlight trusted organisations that provide resources and support for carers.

Whether you’re an unpaid carer, a family member, or someone interested in improving mental health awareness, this video provides easy-to-implement strategies and guidance to help you manage stress effectively.

🔗 Useful Links:

#StressAwarenessMonth #BeTheChange #UnpaidCarers #MentalHealth #CarerSupport #StressManagement #UKCarers #SelfCareTips

Our Stories Matter – Poem by Matthew McKenzie #PCREF

Stories are powerful. They carry memory, experience, and truth in ways that forms and systems often cannot. For unpaid minority carers, our stories are not just reflections, they are essential to understanding the full picture of care.

I’ve recently shared a poem, “Our Stories Matter,” from my upcoming poetry book. It explores the importance of lived experience, intergenerational memory, and the voices that are too often overlooked within health and social care systems.

While assessments, care plans, and clinical notes tell part of the story, they rarely capture the depth of what families and carers experience every day. Our stories provide context. They bring meaning and complete the picture.

This is especially important within the context of PCREF, where recognising lived experience and cultural understanding is key to improving care and addressing inequalities. When carers’ voices are not heard, something vital is missing.

This poem is a reminder that our stories are central.

🎥 Watch “Our Stories Matter” here:
https://www.youtube.com/watch?v=_sVie4YSdbc

Step Outside, Connect, and Recharge: Join Carers Active Together in Hyde Park

Taking time for yourself as a carer isn’t always easy. The daily responsibilities, emotional demands, and constant care for others can often mean your own wellbeing takes a back seat. That’s why initiatives like Carers Active Together matter more than ever.

This Wednesday 15 April, a national day of action is bringing carers across the UK together to focus on movement, wellbeing, and community and you’re invited to be part of it.

A simple step that makes a difference

As part of the day, Carers UK is hosting a free, friendly wellbeing walk in Hyde Park, which is a chance to pause, breathe, and connect with others who understand the caring journey.

Whether you’re caring for a loved one full-time or supporting someone alongside work and life commitments, this walk is designed to be inclusive, relaxed, and welcoming. There’s no pressure, just an opportunity to enjoy fresh air, gentle movement, and good company.

Event details

  • Date: Wednesday 15 April
  • Time: 11:00am
  • Location: Meet at Serpentine Bar and Kitchen, Hyde Park
  • Cost: Free

As highlighted on the event flyer (page 1), the walk is all about giving carers a chance to “get some fresh air, connect with your community, and enjoy a supportive stroll with local carers.”

Why join the walk?

Sometimes the smallest actions like a walk in the park can have the biggest impact. Taking part in this event can help you:

  • Boost your physical and mental wellbeing
  • Meet other carers and share experiences
  • Feel part of a supportive community
  • Take a well-deserved break in a beautiful setting

You’re not alone

Carers play an essential role in our communities, often quietly and without recognition. Carers Active Together is a reminder that your wellbeing matters too and that support is out there.

If you know someone who is a carer, consider sharing this with them. A simple invitation could make a meaningful difference.

Register your place

Spaces are free, but registration is encouraged. You can sign up here:
👉 https://bit.ly/4uEXwJO

Attending the West Kent Paddock Wood Carers Group

By Matthew McKenzie – Carer Activist

Recently, I had the privilege of attending and speaking at the West Kent Paddock Wood Group, and I wanted to take a moment to reflect on the experience, not just as a speaker, but as a mental health carer among peers who truly understand the journey.

The session took place at Unit 1 Eastlands, Maidstone Road in Paddock Wood, a welcoming and accessible venue that immediately set the tone for openness and support. From the moment I arrived, it was clear that this was a safe space. The event was hosted by Naomi Muigua who is the Social Care Involvement Officer.

The structure of the morning was thoughtfully organised, with time for introductions, discussion, and shared learning, all underpinned by respect, confidentiality, and equality among attendees .

A Community that works to understand carers

What stood out to me most was the diversity of lived experience in the room. Carers supporting loved ones with dementia, autism, and complex health needs came together, each bringing their own story, challenges, and resilience. It reinforced something I’ve long believed: carers often feel invisible in wider society, but in spaces like this, they are seen, heard, and valued.

The group is supported by organisations and professionals who are genuinely committed to reducing isolation and improving access to services. From digital inclusion to transport and community support, there’s a real effort to make sure carers are not left navigating the system alone

Sharing My Journey as a Mental Health Carer

As the invited speaker, I spoke from my own lived experience as a mental health carer. My journey began as a young carer supporting my mother, who developed schizophrenia, while also helping care for my brothers with non-verbal autism. Over the years, that experience has shaped not only my life, but my purpose.

During my talk, I shared:

  • The emotional reality of becoming a carer—often suddenly, without preparation
  • The confusion and isolation that can come with navigating mental health systems
  • The importance of recognising carers as partners in care, not just bystanders
  • The long-term impact on mental health, identity, and wellbeing

I also spoke about the concept of “lived experience”—something I feel strongly should be embedded in health and social care systems. If professionals are to truly understand and support carers, they need to hear directly from those who live it every day.

One of the key messages I left with the group was this:
Carers are the hidden link that holds everything together. Without them, the system simply could not function.

This was taken from my poem off my book.

The Conversations of the group

What made the session particularly powerful wasn’t just the presentation, it was the discussion that followed. Carers openly spoke about:

  • Not knowing where to go for help
  • The complexity of accessing services
  • Feeling that outcomes often depend on how well you can advocate
  • The emotional toll of long-term caring

These are not small issues, they are systemic challenges. But spaces like this group allow those conversations to happen honestly, and more importantly, collectively.

Why Groups Like This Matter

The West Kent Paddock Wood Group is actually a lifeline to carers as it provides:

  • A supportive peer network
  • Access to information and local services
  • A platform for carers’ voices to be heard
  • A sense of belonging that many carers lack

For anyone who is caring for a loved one, especially in mental health, I cannot stress enough how important it is to connect with others who understand. You don’t have to do this alone.

Final Thoughts

Leaving the session, I felt both humbled and encouraged. Humbled by the strength of the carers in the room, and encouraged by the existence of a group that is actively working to support them.

If you are a carer in Kent, or even just exploring what support is available, I would strongly recommend attending the West Kent Paddock Wood Group. It is a space where your voice matters, your experience is valid, and your wellbeing is recognised.

For me, it was not just an opportunity to speak, it was an opportunity to connect, learn, and continue advocating for carers everywhere.

If you want to find out more about Kent County Council support for unpaid carers, see link below.

https://www.kent.gov.uk/social-care-and-health/adult-social-care/care-and-support/caring-for-other-people/support-for-carers

Have You Supported a Loved One Through Mental Health Detention? Your Experience Matters

Caring for someone experiencing mental health difficulties can be challenging, emotional, and at times overwhelming. For many people from minority communities, these experiences can be shaped by additional barriers , including stigma, cultural expectations, language differences, and unequal access to support.

Researchers at University College London (UCL) are carrying out a study to better understand what it’s like for family members, friends, and carers when someone close to them is assessed or detained under the Mental Health Act. They are particularly interested in hearing from people whose voices are often underrepresented in research.

The reason this research matters

People from minority ethnic and cultural backgrounds are more likely to be detained under the Mental Health Act, yet the perspectives of their families and carers are often missing from research and policy discussions.

Your experiences can help:

  • Improve how services support families during difficult times
  • Highlight cultural and community-specific needs
  • Inform fairer and more inclusive mental health policies

By sharing your story, you can help shape better support for others going through similar situations.

Who can take part?

You may be able to take part if:

  • You are aged 16 or over
  • You have supported someone who was assessed or detained under the Mental Health Act
  • This could be as a “nearest relative” or simply as a family member, friend, or carer

The study welcomes participants from all backgrounds and is especially keen to hear from people in minority communities.

What does taking part involve?

Taking part means:

  • A one-to-one interview (online via Microsoft Teams or in person)
  • Talking about your experiences supporting someone during detention
  • The interview lasts around one hour

As a thank you, you will receive a £30 voucher.

Your voice is important

We know these experiences can be deeply personal. You are in control of what you choose to share, and all information will be handled confidentially.

Whether your experience was recent or some time ago, your perspective can make a real difference.

Interested in taking part or learning more?

If you would like more information or are thinking about taking part, you can contact the research team at:

nrmha@ucl.ac.uk

Final thoughts

Supporting someone through mental health detention is not something anyone should feel they have to navigate alone. By contributing to this research, you can help ensure that the realities faced by minority carers are better understood and better supported in the future.

Bipolar Awareness Is More Than One Day – World Bipolar Day 2026

To mark World Bipolar Day 2026, I’ve created a short video highlighting the reality of living with bipolar and the vital role of unpaid carers, friends, and family. Awareness is important, but understanding and everyday support matter just as much.

In this video, I share reflections as a mental health carer and activist, focusing on the human side of bipolar and the people who often support quietly in the background.
👉 Watch the video here: https://www.youtube.com/watch?v=gnn0tfLs2z8

World Bipolar Day is supported globally by organisations including:

In the UK, Bipolar UK (https://www.bipolaruk.org) provides vital peer support for people affected by bipolar, including carers. Carer organisations also play a crucial role in supporting unpaid carers:

Have Your Say: Supporting Safer Mental Health Discharge for Black Communities

If you’ve supported someone through a stay in mental health services, your experience could help improve care for others.

Researchers at The University of Manchester are inviting people with lived experience—including carers to take part in an online workshop focused on improving how mental health services support people during hospital discharge, particularly for individuals from Black heritage communities.

Reason for research

Evidence shows that people from Black communities often face poorer outcomes in mental health care, including barriers to access and challenges during discharge from hospital.

To address this, researchers are working to make future services and research more inclusive, culturally responsive, and grounded in real experiences. Hearing directly from carers is a key part of that work .

Who is running this?

The workshop is being led by Dr Natasha Tyler, a Research Fellow at The University of Manchester, as part of work linked to improving future research and care approaches.

The session will also be supported by facilitators with lived experience, including carers, to ensure discussions are grounded and meaningful .

Who can take part?

You may be interested if you:

  • Have cared for someone who has been an inpatient in adult mental health services
  • Have experience of discharge from mental health care
  • Want to share your perspective to improve future support

What’s involved?

  • Format: Online (MS Teams)
  • Duration: 2 hours
  • Dates: Sessions planned between 23rd April and 8th May 2026
  • Payment: £60 as a thank-you for your time

Participants will receive questions in advance to help prepare for the discussion.

Why get involved?

Taking part is a chance to:

  • Help shape future mental health research and services
  • Ensure carers’ voices are included in decision-making
  • Contribute to reducing inequalities in care
  • Share your experience in a supportive environment

How to express interest

If you’d like to take part, you can follow the link in the invitation to share your availability or contact the research team directly.

https://doodle.com/meeting/organize/id/dwy8n1Ma

You’re also welcome to share this opportunity with others who may be interested. For more info, contact Dr Natasha at natasha.tyler@manchester.ac.uk

We Look After Each Other: A Poem of Care, Community, and Lived Experience

I’m proud to share “We Look After Each Other”.

The poem is a spoken word piece from my upcoming poetry collection Unpaid, Unseen and Yet Unbroken (launching 2026).

This poem centres the lived experiences of ethnic and minority mental health carers, where they continue to show up, often without recognition, navigating systems that can feel complex and unresponsive.

The poem focuses on the quiet strength, shared knowledge, and collective care that exist within our communities.

In the spirit of PCREF, this work highlights the importance of listening to lived experience, valuing cultural understanding, and recognising community as a source of resilience and healing