Triangle of Care Community Meeting: January 2026 update

By Matthew McKenzie – Triangle of Care Community Chair.

The meeting opened with a welcome to carers, professionals, and partner organisations, reinforcing the importance of the Community Group as a collaborative and inclusive space. The Chair highlighted the ongoing commitment to co-production, ensuring that lived experience remains central to all Triangle of Care development and decision-making.

The purpose of the meeting was outlined, with emphasis on shared learning, constructive challenge, and influencing national work. Members were reminded that discussions within the group directly inform improvements to Triangle of Care standards, guidance, and implementation across services.

2. Triangle of Care Update (with Q&A)

Mary Patel – Carers Trust

The Triangle of Care update focused on how the programme continues to evolve as a learning-led, improvement-focused framework rather than a compliance or inspection tool. Members were reminded that the Triangle of Care is designed to support services to reflect honestly on how well carers are recognised, involved, and supported, and to identify practical actions for improvement.

The update highlighted the growing maturity of the self-assessment and peer review process. Increasingly, organisations are using the framework not only to evidence good practice but to challenge themselves, learn from others, and embed carer partnership more consistently across teams and pathways.

Self-Assessment and Peer Review: What’s Working Well

The self-assessment process continues to be a key entry point for organisations engaging with the Triangle of Care. Where we were updated on how self-assessment encourages teams to pause and reflect on everyday practice, policies, and culture, rather than relying solely on written procedures. When combined with peer review, this reflection is strengthened by external challenge and lived-experience insight.

As part of the update, members were updated on emerging learning from Triangle of Care reports, including self-assessment submissions and peer review feedback. These reports were described as an important source of insight into how carer involvement is experienced on the ground, highlighting both areas of strong practice and recurring challenges across services

NOTE: These include reports going back 6 months, so not all NHS trusts listed

Peer review was described as most effective when organisations approach it with openness and curiosity. Lived-experience peer reviewers play a crucial role in asking different questions, highlighting blind spots, and grounding discussions in real-world carer experience.

A key discussion point was how to balance national consistency with local flexibility. Members acknowledged that while the Triangle of Care provides a shared framework and standards, services operate within different contexts, populations, and resource constraints.

Triangle of care and Patient Carer Race Equality Framework updates

The Triangle of Care and PCREF Phase 2 pilot will be launched in April 2026, to test co-produced specialist guidance to support integration of carers from racially marginalised communities into the Triangle of Care.

Alignment with Wider System Priorities

Members discussed how Triangle of Care activity aligns with broader system developments, including Mental Health Act reform, integrated care, and equality frameworks. There was strong agreement that Triangle of Care should not sit in isolation but be embedded within wider quality improvement, safeguarding, and workforce development agendas.

The need to visibly align Triangle of Care with the Patient and Carer Race Equality Framework was reiterated. Members emphasised that carers must be able to see how equality commitments translate into tangible actions within standards, training, and evidence.

Key points

  • Aligning Triangle of Care with Mental Health Act reform
  • Embedding within wider system and quality frameworks
  • Stronger visibility of equality and race equity

Carer Voice and Evidence of Impact

A recurring theme was the importance of demonstrating impact. Members discussed how services can better evidence carer involvement and experience beyond policies and training records. This includes qualitative feedback, lived-experience insight, and examples of how carer input has influenced service design and delivery.

Emerging Challenges and Areas for Development

The update also acknowledged ongoing challenges, including workforce pressures, digital transformation, and uneven awareness of the Triangle of Care across organisations. Members noted that carer involvement can become fragile during periods of change unless it is firmly embedded in systems and culture.

Summary: Where the Programme Is Heading

The Triangle of Care update concluded with a shared understanding that the programme is well-established but still evolving. The focus for the next phase is on deepening impact, strengthening alignment with equality and legislative change, and supporting services to move from intention to consistent, inclusive practice.

Key discussion points

  • Peer review as a developmental, learning-focused process
  • Balancing national consistency with local flexibility
  • Alignment with Mental Health Act reform and equality frameworks
  • Keeping carer voices central to assessment and review

3. Sharing Experiences as a Peer Reviewer

Carer involved with Avon & whitlshire

A carer presented from her involvement at Avon and Wiltshire Mental Health Partnership NHS Trust, where she is involved as a lived-experience peer reviewer contributing to Triangle of Care.

She shared reflections from her role as a lived-experience peer reviewer. She spoke about the importance of authenticity, trust, and transparency in the peer review process, and how lived experience strengthens both credibility and impact. Her contribution reinforced the value of co-production and highlighted how peer review can challenge assumptions, surface good practice, and promote more carer-inclusive cultures within organisations.

The discussion reinforced that organisational openness and leadership engagement are critical to turning peer review feedback into real change. Members reflected on how hearing directly from peer reviewers deepens understanding of the practical impact of policies on carers.

Q&A / Discussion

  • Members asked how organisations typically respond to lived-experience feedback.
  • The involved carer noted that openness and leadership support were key factors in whether reviews led to meaningful change.
  • Discussion reinforced the importance of preparing services for peer review so that carers feel genuinely welcomed and listened to.

4. Carer Contingency Planning – Presentation and Local Practice

Mary Patel
Local example: Carly Driscoll – Bradford District Care

This session focused on carer contingency planning as a key element of carer support and crisis prevention. The presentation outlined why contingency planning is critical in reducing carer anxiety, preventing emergency admissions, and ensuring continuity of care when carers are unable to continue their role.

link – https://carers.org/resources/all-resources/150-carer-contingency-campaign-pack-supporting-carers-and-strengthening-local-care-systems

Carer Contingency Planning (CCP), as championed by Carers Trust, is designed to support carers by planning ahead for times when they might suddenly be unable to continue caring. This might include illness, emergencies, hospitalisation, or other crises. CCP shifts the focus from reactive support during crisis moments to proactive planning that reduces anxiety and prevents avoidable breakdowns in care.

Carers Trust emphasises that CCP is a conversational, personalised process where the carer’s expertise is central. Carers know the routines, preferences, and cues that matter for the person they care for; the goal of CCP is to capture that knowledge in a way that can be shared quickly and effectively with services, families, and emergency responders when needed.

A local practice example from Bradford District Care demonstrated how contingency planning can work in practice, highlighting practical tools, partnership working, and engagement with carers. Discussion explored the benefits of clear, accessible plans, while also acknowledging challenges around awareness, consistency, and uptake

The local practice example demonstrated how contingency planning can be embedded into routine work through partnership approaches and proactive engagement with carers. Members discussed the importance of introducing plans early and reviewing them regularly.

Key features of the Bradford approach

  • Routine integration: CCP discussions happen early, not just in crisis moments
  • Partnership working: Health, social care, and voluntary sector staff work in concert
  • Accessible documentation: Plans are shared in forms that carers can use and update
  • Support for carers: Carers are supported to lead the planning, not be passive recipients
  • Ongoing review: Plans are revisited as needs and circumstances evolve

Benefits seen locally

  • Carers report feeling more confident and less anxious
  • Greater clarity across professionals when carers are unavailable
  • Fewer last-minute, unplanned crises or service escalations
  • Better use of local support networks when official services are stretched

Q&A / Discussion

  • Questions focused on how contingency plans are introduced to carers and reviewed over time.
  • Members raised concerns about low awareness of contingency planning among carers not already engaged with services.
  • Discussion highlighted the need for flexibility, recognising that carers’ circumstances can change rapidly.

5. Carer Contingency Planning – System Perspective

Sara Lewis – SW London ICB

Sara Lewis’s session focused on Carer Contingency Planning (CCP) as a core, preventative element of carer support rather than a reactive or optional add-on. CCP is a structured way of planning for what should happen if a carer is suddenly unable to continue caring due to illness, crisis, exhaustion, or an emergency. At its heart, CCP is about reducing uncertainty and anxiety for carers while ensuring continuity and safety for the person they support.

Sara emphasised that effective CCP recognises carers as partners with expert knowledge of the person they care for. The process supports carers to articulate what matters most, what routines and support are essential, and who needs to be contacted in an emergency. When done well, CCP helps prevent avoidable crises, emergency admissions, and breakdowns in care by making plans visible, accessible, and shared across relevant services.

Accessibility was a major theme, particularly the risks of digital exclusion. While digital tools can be effective, members stressed the need for non-digital options, language support, and culturally appropriate approaches to ensure equity.

Key Takeaways from Sara Lewis’s Session

  • Carer Contingency Planning is preventative, not reactive
  • CCP is built on early, ongoing conversations with carers
  • Plans should reflect what matters to carers and the cared-for person
  • CCP must be accessible, inclusive, and culturally appropriate
  • Digital tools can help, but must not increase exclusion
  • Successful CCP requires shared ownership across services
  • When embedded well, CCP reduces crisis, anxiety, and system pressure

Q&A / Discussion

  • Members questioned how to balance digital innovation with the risk of digital exclusion.
  • Language barriers and accessibility for carers with different communication needs were highlighted.
  • Discussion emphasised that contingency planning must be embedded into standard care planning processes, not treated as optional or additional.

6. Looking Ahead: Priorities for the Community Group

The “Looking Ahead” discussion focused on how the Triangle of Care Community Group can continue to influence meaningful change for carers in an evolving policy and practice landscape. Members reflected on the increasing complexity of health and care systems and the importance of ensuring that carers are not left behind as reforms, digital transformation, and workforce pressures accelerate.

A strong theme throughout the discussion was visibility, making carer involvement, equality, and partnership explicit in practice, evidence, and outcomes. Participants emphasised that carers must not only be recognised in principle but experience consistent involvement and support in real-world settings. The group agreed that the next phase of work should strengthen both strategic influence and practical implementation.

Mental Health Act Reform and Carer Involvement

Members discussed the implications of upcoming Mental Health Act reform, particularly around carers’ rights, information-sharing, and involvement in decision-making. There was recognition that Triangle of Care principles provide a strong foundation for supporting services to meet new expectations, but that further work will be needed to translate legislation into everyday practice.

The group highlighted the risk that carers could be inconsistently involved if workforce understanding is weak or if systems focus narrowly on legal compliance. Proactive guidance, training, and examples of good practice were seen as essential to ensure carers are meaningfully included rather than consulted as an afterthought.

Equality, Race Equity, and Inclusion

A central priority looking ahead is ensuring that Triangle of Care activity visibly aligns with the Patient and Carer Race Equality Framework (PCREF). Members stressed that carers from racialised and marginalised communities often face additional barriers to involvement, including mistrust, cultural misunderstandings, and unequal access to support.

The group agreed that equality must be embedded into standards, peer review evidence, and training—not treated as a parallel or optional agenda. This includes capturing meaningful data, listening to diverse carer voices, and ensuring culturally responsive practice is clearly demonstrated.

Workforce Training and Education

Workforce development was identified as a critical lever for long-term change. Members highlighted the need to strengthen carer awareness training across all roles, particularly for staff new to mental health and social care settings. Without this foundation, carer involvement remains inconsistent and dependent on individual attitudes rather than organisational culture.

There was strong support for influencing pre-registration education, including universities and training providers, to embed carer awareness earlier. This was seen as an opportunity to normalise partnership with carers from the start of professional careers rather than trying to retrofit it later.

Key points

  • Strengthening carer awareness across the workforce
  • Embedding Triangle of Care principles early in training
  • Influencing universities and pre-registration pathways
  • Moving from individual goodwill to system-wide culture change

Digital, Data, and Accessibility

Digital transformation featured prominently in the discussion, with members acknowledging both its potential and its risks. While improved data systems and digital tools can support information-sharing and coordination, there was concern that carers without digital access or confidence may be excluded.

Participants emphasised that digital solutions must be designed inclusively, with non-digital alternatives always available. Data collection should support understanding of carer experience and inequality, not become a barrier to support.

Key points

  • Digital tools should support, not replace, relationships
  • Risk of digital exclusion for some carers
  • Importance of non-digital alternatives
  • Using data to improve equity, not reinforce gaps

Young Carers and Marginalised Groups

Supporting young carers and carers from marginalised communities was highlighted as a continuing priority. Members noted that these groups are often under-identified and less likely to be involved in care planning or decision-making, despite carrying significant caring responsibilities.

The group agreed that future work should focus on visibility, early identification, and tailored approaches that recognise the specific needs and challenges faced by these carers. Partnership with education, community, and voluntary sector organisations was seen as essential.

Key points

  • Improving identification of young carers
  • Addressing barriers faced by marginalised carers
  • Tailored, age-appropriate and culturally sensitive support
  • Stronger partnership working beyond health services

Collective Commitment Moving Forward

The discussion concluded with a shared commitment to using the Community Group as a platform for influence, learning, and accountability. Members recognised the value of continuing to share practical examples alongside strategic discussion, ensuring that Triangle of Care principles are translated into everyday practice.

Looking ahead, the group aims to remain proactive, inclusive, and responsive—supporting services to recognise carers as equal partners and ensuring that no carer is left unseen or unsupported as systems evolve.

Key discussion points

  • Preparing for Mental Health Act reform
  • Embedding the Patient and Carer Race Equality Framework
  • Improving workforce training and education pathways
  • Supporting young carers and marginalised communities
  • Improving data and digital systems without exclusion

As Chair I thanked contributors and reaffirmed the importance of continued collaboration to ensure carers are recognised as equal partners in care, with Triangle of Care principles translated into meaningful practice across services.

For those interested to hear more about triangle of care, see details below

Speaking as a Carer: Reflections from the Carers’ Wellbeing Conference, London

By Matthew McKenzie

I’ve spoken at many events over the years, but standing in a room full of carers always is a great experince differently. The room filled with lived experience, this time paid and unpaid carers carrying invisible weight of caring stories that rarely get space.

The Carers’ Wellbeing Conference in London, organised by Carers’ Mind CIC, was a moment where carers were allowed to be people first.

The event was hosted at The Abbey Centre, a welcoming community venue in Westminster that provides vital space for local groups, charities, and events focused on wellbeing, inclusion, and social support.

CarersMind CIC is a community-interest organisation dedicated to improving the wellbeing, visibility, and support of both paid and unpaid carers. Through accessible events, practical training, and open conversations about mental health, CarersMind CIC creates safe spaces where carers are recognised as individuals

The Impact of Caring on Mental Health

When I was invited to speak about “The Impact of Caring on Mental Health and What Actually Helps”, I didn’t hesitate. Caring has shaped every part of my adult life. It has taught me empathy, patience, advocacy, but it has also exposed me to burnout, trauma, guilt, and long stretches of isolation.

Too often, carers are spoken about rather than with. This conference made a conscious effort to centre carers’ voices, not as an afterthought, but as expertise.

The Room Told Its Own Story

At the conference, there was no pressure to “cope better” or “be more resilient” without acknowledging the cost. Instead, there was honesty.

Carers spoke about:

  • Burnout that creeps in quietly
  • Guilt for needing rest
  • The emotional toll of long-term responsibility
  • Feeling unseen by systems that rely on them

These were truths that deserved to be heard without judgement.

What Claire Shelton Shared at her session

Claire spoke openly about how caring impacts mental health carers over time, not just during moments of crisis. she talked about trauma that doesn’t announce itself, about stress containers that overflow slowly, and about how carers often normalise distress because “there’s no other option.”

Most importantly, she focused on what actually helps:

  • Being recognised as a carer both formally and emotionally
  • Access to peer support, not just professional services
  • Practical tools that reduce isolation
  • Boundaries that protect carers’ wellbeing without guilt

One resource Claire highlighted was the Hub of Hope, because carers need access to support that doesn’t require jumping through endless hoops. These matter not because they fix everything, but because they return a small amount of control to people who’ve lost a lot of it.

What I Shared in my session

In my session, I spoke from lived experience about the long-term impact of caring, shaped deeply by my role as a carer for my mother. I shared how caring is rarely defined by single moments of crisis, but by the gradual, cumulative pressure that builds over time. This includes the emotional labour, the constant vigilance, and the way stress and trauma often go unrecognised because caring simply becomes “what you do.”

I reflected on how caring for my mother affected my mental health, identity, and sense of self. This experience led me to speak about carers’ rights the right to be recognised as a carer, to be involved in decisions, to access support, and to protect one’s own wellbeing without guilt or fear of judgement.

Most importantly, I focused on what actually helps:

  • Being identified and recognised as a carer, both formally and emotionally
  • Understanding and exercising carers’ rights
  • Access to peer support grounded in shared lived experience, not only professional services
  • Practical tools that reduce isolation and complexity

The Power of Being in the Same Room

One of the most powerful moments wasn’t during my talk it was during the conversations that followed. Carers sharing strategies with each other. Nodding in recognition. Saying, “I thought it was just me.”

That’s the quiet power of events like this. They remind carers that their experiences are valid, shared, and worthy of space.

A Collective Effort

It was a privilege to share the day with:

  • Claire Shelton, who spoke with clarity and compassion about resilience, stress management, and boundaries
  • Klivert Jabea, who brought warmth, insight, and a strong message that self-care is not a luxury
  • The organisers at Carers’ Mind CIC, who created an environment that felt safe, inclusive, and genuinely carer-focused

This conference was about acknowledging reality and that’s where real wellbeing work begins.

Leaving with Hope and Responsibility

I left the Abbey Centre reminded of why this work matters. Carers are holding together families, communities, and systems often at great personal cost. Supporting carers isn’t optional. It’s essential.

Resources and Support for Carers

If you are a carer and are looking for support for your wellbeing, mental health, or caring role, the following resources were highlighted or reflected in discussions during the conference:

  • Hub of Hope — https://hubofhope.co.uk
    A free, UK-wide mental health support database that helps carers find local and national services quickly, without needing to navigate complex systems. It is particularly useful for carers who may not know where to start or who feel overwhelmed by traditional referral pathways.
  • CarersMind CIC — https://carersmind.co.uk/
    A community interest company focused on improving carers’ mental health and wellbeing through events, training, and open conversations that centre lived experience. Their work creates spaces where carers feel recognised, heard, and supported.
  • Carers UK — https://www.carersuk.org/
    Provides information on carers’ rights, benefits, assessments, and practical guidance for unpaid carers across the UK.
  • Mind — https://www.mind.org.uk/information-support/helping-someone-else/carers-friends-family-coping-support/
    Offers mental health information, helplines, and local services, including support relevant to carers experiencing stress, anxiety, or burnout.
  • NHS Carers Support
    Local NHS and local authority carers services can offer carers’ assessments, signposting, and practical support. Availability varies by area, but carers have a right to request an assessment.
  • Rethink Mental Illness – Carers Hub — https://www.rethink.org/advice-and-information/carers-hub/
  • Information and guidance for carers supporting someone with mental illness, including rights and practical support.

Christine’s Journey: From Carer to Mum – A Story of Resilience and Hope

By Matthew McKenzie

We all know how challenging the life of a carer can be, especially when it involves the emotional and physical toll of supporting a loved one through difficult health challenges. Christine’s powerful story of navigating her loved one’s mental health and recovery through the fears of mental health system discharge.

In Christine’s latest podcast, “From Carer to Mum” she opens up about her personal journey, sharing the challenges and triumphs of transitioning from the role of a carer back to simply being a mum. Over the course of two years, Christine witnessed her loved one’s growth and recovery, which was made possible through the right care, support, and therapy.

Christine’s story focuses about overcoming struggles; plus about rediscovering joy and a new sense of normalcy.

Now, Christine has taken the next step in sharing her journey. She’s launched her own podcast, where she’ll continue to inspire others by sharing her experiences, reflections, and insights into caregiving, recovery, and the journey of moving forward.

Tune into Christine’s new podcast channel, where you’ll hear more about the highs and lows of caring for a loved one, as well as the emotional lessons learned along the way. The first episode, titled “Christine’s Journey: From Carer to Mum,” is already live on SoundCloud and is ready for you to listen.

Click on the link below to listen.

Listen now and join Christine on her inspiring journey.

Supporting Young People, Supporting You: Free Training and Local Support for Unpaid Carers in Ealing

Caring for a child or young person can be incredibly rewarding – but it can also feel overwhelming, especially when you’re worried about their emotional wellbeing or safety. If you’re an unpaid carer in Ealing supporting a young person, you’re not alone, and there is local support available for you.

This spring, a new free online training opportunity is available for parents and unpaid carers in Ealing, designed to build confidence, understanding and hope when supporting young people who may be struggling.

Free Online Training: SPOT – Parents and Carers

PAPYRUS, the national charity for the prevention of young suicide, has been funded by Ealing Council to deliver SPOT: Parents and Carers – Connecting with Life and Creating Hope.

This training is specifically designed to support parents and unpaid carers to feel more confident in helping young people stay safe.

The sessions focus on:

  • Recognising signs that a child or young person may be struggling or experiencing suicidal thoughts
  • Developing confidence to talk openly and safely about suicide
  • Learning how to support safety planning alongside a young person
  • Understanding helpful language and common challenges in these conversations
  • Knowing where and how to access further support

The overall aim is to help carers feel better equipped to create safer spaces for young people and to strengthen connection, hope and understanding .

Online Training Dates

The SPOT sessions are delivered online, making them easier to attend around caring responsibilities. You can choose the date and time that works best for you:

  • 12 March 2026 – 7:00pm to 8:30pm
  • 18 March 2026 – 6:30pm to 8:00pm
  • 26 March 2026 – 1:00pm to 2:30pm

The sessions are free to attend, but booking is required.

You Don’t Have to Do This Alone: Ealing Carers Partnership

Alongside training opportunities like SPOT, unpaid carers in Ealing can access ongoing help through the Ealing Carers Partnership.

The partnership brings together local organisations to support unpaid carers of all ages, including parents and carers of children and young people. Support can include:

  • Information and advice
  • Emotional support and listening spaces
  • Help navigating services
  • Peer support and carer groups
  • Training and workshops to build skills and confidence

If you’re caring for someone without pay, whether that’s a child, young person, partner, friend or family member – you are recognised as an unpaid carer, and you are entitled to support.

The Ealing Carers Partnership works to make sure carers are seen, heard and supported across the borough, and can help you find the right service at the right time.

https://www.ealingcarerspartnership.org/

Building Confidence, Together

Many carers tell us that one of the hardest parts of supporting a young person is not knowing what to say, or worrying about saying the “wrong” thing. Training like SPOT is not about having all the answers, it’s about building confidence, understanding and connection.

If you are supporting a young person in Ealing and would like to strengthen your confidence, we strongly encourage you to take up this opportunity and to connect with the wider support available through the Ealing Carers Partnership.

If you have questions, need help accessing support, or would like to know more about what’s available for unpaid carers locally, please reach out on the link below

https://www.ealingcarerspartnership.org/

Coffee & Connection: A Space Just for Cancer Caregivers

Caring for someone affected by cancer can be deeply meaningful—and incredibly demanding. Between appointments, medications, emotional support, and everyday life, caregivers often put their own needs last. Yet caregivers need care too.

That’s why Coffee & Connection exists: a welcoming, gentle space where caregivers can pause, breathe, and connect with others who truly understand.

You Don’t Have to Carry It Alone

As a cancer caregiver, you may find yourself holding many emotions at once, these being love, worry, exhaustion, hope, frustration, and resilience. While friends and family may care deeply, it can be hard to explain the realities of caregiving to someone who hasn’t lived it.

Coffee & Connection brings together people who get it.

This is a place to:

  • Share how cancer has impacted your life as a caregiver
  • Listen to others’ stories without judgment or pressure
  • Feel seen, heard, and supported
  • Simply enjoy a cup of coffee in good company

There’s no expectation to talk if you don’t want to. Sometimes, just being in the room with others who understand is enough.

A Warm, Caring Environment

Set in a relaxed café-style space, Coffee & Connection is designed to feel calm and human and not clinical. Where Conversations unfold naturally over tea and coffee, surrounded by warmth, greenery, and kindness.

Whether you are caring for a partner, parent, child, sibling, or friend at any stage of the cancer journey, you are welcome to attend.

When and Where

Every first and last Tuesday of the month
10:00 AM – 12:00 PM

Clapham Park, Cube
116 Kings Avenue
London, SW4 8EP

Want to Know More?

If you’d like more information or want to check in before attending, you can reach out to:

A Small Step That Can Make a Difference

Caregiving can feel isolating, but connection has the power to lighten the load. Coffee & Connection offers a gentle reminder that you are not alone, and that your experiences matter too.

If you’re a cancer caregiver looking for understanding, support, or simply a moment of calm, consider joining us. The coffee will be warm, and so will the welcome.

Latest poem from my book – Unpaid, Unseen and Yet Unbroken

By Matthew McKenzie, facilitator of National ethnic mental health carers forum

Welcome to my first blog for 2026.

I am working on a new poetry project linked to my forum and poetry groups. This poem turned into song is written from the perspective of an unpaid ethnic mental health carer, and explores identity, pride, self-worth, and refusing shame in systems that don’t always listen or recognise lived experience.

The poem is taken from my forthcoming poetry book in development,
Unpaid, Unseen and Yet Unbroken (due 2026), which centres the voices of ethnic mental health carers and aligns closely with the aims of PCREF (Patient and Carer Race Equality Framework), particularly around listening, inclusion, and lived experience shaping systems.

I’m using poetry and creative formats as another way to:

  • amplify carer voices
  • explore race and care with honesty
  • support conversations about equity, culture, and confidence in mental health services

If this resonates with your work, community, or organisation, please feel free to share.
Listening is an act of care.

Poetry Submissions for Minority Carers in Mental Health Care: Share Your Voice

Matthew McKenzie FRSA BEM, poet and advocate for unpaid ethnic mental health carers, is inviting carers involved in NHS Trusts, PCREF (Patient and Carer Race Equality Framework), and Trust involvement registers to submit their poems for an upcoming 2026 poetry collection. This collection will spotlight minority carers’ voices and explore themes of race, culture, and lived experience in mental health care.

About the Poetry Collection

The collection will focus on amplifying minority carers’ experiences through poetry. It will be part of the paperback version of Matthew’s upcoming poetry book Unpaid, Unseen and Yet Unbroken and will include poems from carers all over the country. This is a unique opportunity for minority ethnic carers to have their voices heard and their stories shared on a national platform, contributing to the ongoing conversation about race equality, care, and mental health.

Why Should You Submit a Poem?

If you’re a minority carer or carers from underrepresented community, your voice matters. PCREF is committed to creating systemic change, and this collection will work alongside it to ensure that carers from minority communities are not left unheard. Submitting your poem gives you the chance to:

  • Raise awareness of the emotional, cultural, and psychological realities of being a carer.
  • Inspire others by sharing your lived experience.
  • Amplify minority voices within NHS Trusts, PCREF spaces, and mental health care systems.

Who Can Submit?

We welcome submissions from unpaid ethnic mental health carers who are:

  • Involved in NHS Trusts, PCREF, or trust involvement registers.
  • Attending ethnic mental health carer peer groups at carer centres
  • Interested in sharing their personal experiences and reflections through poetry.

How to Submit Your Poem:

  • Submit an original poem that reflects the emotional, cultural, and psychological realities of being an unpaid mental health carer.
  • Poems can focus on themes such as:
    • Emotional challenges of care
    • The hidden burden of caring
    • Resilience and survival
    • Navigating mental health services
    • Coping with racial and cultural barriers in care
    • Family dynamics in caregiving
  • Deadline for submissions is late April 2026.

Submission Guidelines:

  1. Format: Poems can be submitted in Word, PDF, or plain text format.
  2. Length: There is no strict length, but we recommend that submissions be no longer than 1 page.
  3. Multiple submissions: You can submit more than one poem if desired.
  4. Contact Information: Please include your full name, contact details along with your poem, so i can credit you. Unless you wish to be anonymous.

How to Submit:

You can also reach out to Matthew directly if you have any questions about the submission process or the collection.

What Happens After You Submit?

Once submissions are received, I will review all entries and select poems that align with the themes of the collection. All selected poets will be notified and credited in the final publication.

Need Inspiration or Support?

If you’re unsure where to start or need some encouragement, consider reflecting on your personal journey as a carer. Think about moments where language failed to express your experience or times when your strength surprised you. Your story is valuable, and this collection is about lifting up voices that have often been overlooked.

Contact Information:

For any questions or additional information, please contact Matthew McKenzie:

Submit Your Poem and Be Part of the Change

This is your chance to raise awareness and inspire others by sharing your lived experiences through poetry. Help shape a future where minority carers are valued, heard, and recognized for the essential work they do. We look forward to reading your stories!

Unpaid, Unseen and Yet Unbroken: A New Spoken Word Poem

By Matthew Mckenzie – facilitator of national ethnic mental health carers forum

I’m pleased to share “Unpaid, Unseen and Yet Unbroken”, a spoken word poetry video that marks the first poem released from my forthcoming poetry collection of the same name.

This first poem speaks from within the lived reality of unpaid mental health carers, particularly those from ethnic and marginalised communities whose labour is often overlooked, misunderstood, or taken for granted. It reflects moments many carers will recognise: waiting rooms, misrecognition, quiet endurance, and the strength it takes to keep showing up without acknowledgement.

🎥 Watch the spoken word video here:

The wider collection I am currently working on brings together poems shaped by care, fatigue, love, resilience, and survival. It is a body of work rooted in lived experience and community voices, offering poetry not only as expression, but as witness and affirmation.

This first poem sets the tone for what is to come, promoting honest, reflective, and unapologetic in its call for carers to be seen, heard, and respected.

This work is part of my ongoing commitment through my A Caring Mind youtube channel to use creativity as a way to challenge stigma, amplify unheard voices, and centre care as a vital social contribution.

More poems from this collection will be shared in the coming months.

Top 20 Essential Resources for Mental Health Carers

By Matthew McKenzie FRSA BEM – Carer Activist

Caring for a loved one with a mental illness is a demanding, often under-recognized role. Many unpaid carers find themselves thrust into complex scenarios, navigating mental health crises, advocating for proper support, balancing their own wellbeing, and, too often, facing these challenges in isolation. While every carer’s journey is unique, a core set of resources can make a dramatic difference between feeling overwhelmed and finding sustainable ways to cope and thrive.

This article and video unpacks those essential resources through the lens of an experienced carer activist and carer, offering both a practical hierarchy of importance and actionable insights. Using a “tier list” as a framework, we’ll explore which resources are most urgent and why, how they fit together, and tips for navigating the labyrinth of mental health care.

To watch which resources are essential for mental health carers, watch the video below.

The Tiered Approach: Prioritizing Carers’ Needs

Resources for mental health carers can be overwhelming in scope from legal advice and crisis hotlines to financial support and practical training. To create clarity, resources are placed into four tiers:

  • S Tier (Essential): Survival-level supports; absolutely critical for continued caring and crisis management.
  • A Tier (Sustaining): Highly valuable resources that keep your caring role tenable in the long run.
  • B Tier (Enhancing): Important support systems that reduce daily strain and improve quality of life but aren’t as immediately pressing.
  • C Tier (Auxiliary): Long-term stability and planning; often overlooked but still necessary.

Let’s break down what falls into each tier and how you can access and leverage these resources effectively.

Carers: Unsung Heroes, Essential Supports

Mental health carers are the invisible backbone of the support system—shouldering enormous responsibility, often without recognition or adequate support. By focusing on these critical resources and prioritizing self-care as well as advocacy, carers can find greater resilience, confidence, and sustainability.

Remember, you are not alone. Whether you access support online, through local groups, or formal agencies, reach out, ask questions, and don’t accept “no” as the final answer when it comes to your rights and wellbeing. With the right resources and support system, caring for a loved one with mental illness can be not just a challenge to survive—but a journey where you both can thrive.

Triangle of Care Community Meeting: December 2025 update

By Matthew McKenzie – TOC Community Chair

Our final Triangle of Care (ToC) Community Group meeting of the year brought together carers, professionals, and ToC members from across the UK to share updates, raise concerns, and discuss priorities for 2026 and beyond. Although Microsoft Teams provided some surprises, we made it work, thanks to teamwork and patience. The conversation was rich, heartfelt, and often very moving.

1. Opening & Agenda

As chair of the meeting, I acknowledged technical teething problems as the group used Teams for the first time in this format. Mary (ToC Programme Lead) welcomed attendees and explained the privacy-driven decision to hide email addresses, which also unfortunately hid attendees’ names. A fix will be implemented before the January meeting.

The agenda included:

  • Triangle of Care national updates (Mary)
  • Carer co-production and lived experience input (Matthew)
  • Surrey & Borders’ co-production example (postponed)
  • Research priority-setting presentation (Richard, University of Manchester)
  • Carer questions and discussion

2. Triangle of Care National Update (Mary)

Mary provided a comprehensive end-of-year update structured around ToC’s three priority areas for 2024–25.

2.1 Embedding the Relaunched Triangle of Care Framework

Growth & progress

  • 16 new members have joined the scheme since April, bringing ToC membership to over 80.
  • The first Welsh hospital achieved a ToC Star Award, prompting the creation of a new Welsh-language logo and Welsh materials.
  • A social care pilot is underway with Livewell South West, with West Hertfordshire Teaching Hospital reviewing ToC criteria for an acute setting.
  • Nine Star Awards have been achieved this year, with a further 12 annual reviews approved. Many more annual reports are pending review before year-end.

Standardising data
Mary emphasised the push for consistent reporting across Trusts, including:

  • numbers of carers identified
  • uptake of carer awareness training
  • numbers of carer champions

This will help build a national picture of impact.

Webinars
ToC’s Lunch & Learn series continues, with the recent Carers Rights Day webinar (in partnership with University of Bristol) focusing on the Nearest Relative role under the Mental Health Act (MHA). Resources are available via Carers Trust’s YouTube channel.

2.2 Young Carers: Identification & Support

A major update was the successful national policy win relating to young carers and the Mental Health Act.

Mental Health Act Reform – Safety Net for Young Carers

Following campaigning by Carers Trust, the Young Carers Alliance, and ToC members who wrote to MPs:

  • Government has agreed to update the MHA Code of Practice to require:
    • identification of children when an adult is detained
    • sharing of information about available support
    • referrals for young carer needs assessments
  • Updates to advance choice documents will require practitioners to ask about dependent children.
  • Expected implementation: Summer 2026.

This win was warmly welcomed by the group.

2.3 Racially Minoritised Carers & PCREF

Mary updated members on ToC’s work to ensure carers are fully represented in the Patient & Carer Race Equality Framework (PCREF).

Key updates

  • A national Task & Finish Group has now completed its review of the first four ToC standards; the final standard is underway.
  • Piloting of new culturally sensitive criteria is planned with 10 NHS Trusts beginning April 2026.
  • Example of early good practice: Livewell South West is implementing a new “essential data template” that includes carers, enabling services to better identify and support racially minoritised carers.
  • Carers Trust is calling for a statutory duty for NHS mental health providers to implement PCREF in full, including community governance.

2.4 Changing the Narrative on Care – New Research

Mary introduced new research (supported by the Health Foundation and Oxfam GB) titled Changing the Narrative on Care, highlighting:

  • Although 80% of the public value unpaid care, this does not translate into policy action or investment.
  • Three recommended reframes:
    1. Care is a universal experience, not a niche issue.
    2. No care without support, make support visible and tangible.
    3. Care is a partnership between families, communities and systems—not something families must do alone.

The full report is available on Carers Trust’s website.

3. Carer Involvement, Co-Production & Lived Experience (Matthew McKenzie)

I then presented an in-depth reflection on the value of authentic carer involvement, drawing on his lived experience and his role working with multiple NHS organisations.

Key points included:

  • Carers are not passive observers, they hold critical lived knowledge that improves services.
  • Real co-production goes beyond consultation; carers must be equal partners in shaping policy, documentation, training, and strategic decisions.
  • Examples Matthew gave from his own involvement:
    • redesigning welcome packs and leaflets
    • addressing confidentiality misapplication
    • involvement in recruitment panels
    • delivering training to staff at induction
    • reviewing complaints and compliments themes
    • advising on discharge processes and family-inclusive safety protocols
    • participating in research steering groups
  • Carers’ insight is especially essential in safeguarding, quality boards, and identifying service gaps often invisible to professionals.

4. Surrey & Borders Co-Production Example

A planned presentation from Surrey & Borders was postponed, as the relevant colleague could not attend with materials. They hope to present at a future meeting.

5. Research Priority Setting in Secure & Forensic Mental Health (Richard Kears)

Richard introduced a national project with the James Lind Alliance (JLA) aiming to identify the top 10 research priorities for secure and forensic mental health services across England, Scotland and Wales.

Who is the survey for?

  • Carers
  • People with lived experience of secure/forensic services
  • Staff working in these services
  • Anyone indirectly connected (victims, families)

Purpose

To ensure future mental health research is led by the real concerns of those most affected, not only by academics or pharmaceutical interests.

Process

  1. National survey gathering research questions.
  2. Analysis to identify common themes.
  3. Second, more focused survey to refine priorities.
  4. National workshops with carers, staff and people with lived experience to finalise the top 10.

A QR code and flyer were shared for distribution. The group expressed strong support.

6. Attendee Discussion & Questions

This was the richest section of the meeting, with many heartfelt contributions. The themes below reflect the key concerns raised.

6.1 Scotland & UK-wide ToC Alignment

A carer asked why Scotland’s ToC framework is separate and not integrated into the UK ToC accreditation model.
Mary explained:

  • Scotland currently uses ToC only as a free policy framework.
  • Implementing the accreditation model in Scotland would require groundwork to assess willingness and ability of providers to fund membership.
  • Integration is being discussed but is not imminent.

6.2 Clarity on Co-Production

Several carers voiced concerns that:

  • “Co-production” is often used as a buzzword.
  • Some NHS Trusts label work as co-produced after completing it.
  • Carers need clarity on what ToC means when using the term.

Mary responded that ToC uses a ladder of engagement, distinguishing:

  • carer engagement
  • carer involvement
  • full co-production

Carers Trust is developing a formal principles-based statement on involvement for future meetings.

6.3 Older Carers: Visibility, Support & Inequalities

The majority of carer questions focused on the unmet needs of older adult carers, many of whom are supporting people with severe mental illness—not dementia—and often have been caring 20–40 years.

Attendees reported:

  • Feeling “invisible” within both policy and services.
  • Being incorrectly grouped under “older carers = dementia”.
  • Their own poor health affecting their caring ability.
  • Increasing struggle to get responses from professionals.
  • Serious concerns about who will care for their loved ones when they die.
  • Feeling less heard as they age, compared with younger carers or newer voices.

One carer (age 78) shared:

“I can’t retire from caring. Benefits stop at 65, but the caring doesn’t.”

Another said:

“We have to shout louder as older women to be heard—and still we aren’t.”

Mary acknowledged the seriousness of these issues and committed to:

  • bringing older carers’ concerns into ongoing ToC work
  • exploring dedicated guidance and better mainstreaming within the ToC standards
  • sharing good practice on carer contingency planning in upcoming meetings

I have placed the guide below

Click to access Carer-Contingency-Planning-in-the-Universal-Care-Plan-Guidance-V1.0.pdf

I also reiterated the group’s role in surfacing policy gaps and influencing future national lobbying.

6.4 Carer Registration & Meeting Access

Several carers raised issues with:

  • The length of the ToC sign-up form
  • Not receiving meeting links despite signing up
  • Verification barriers when joining Teams

Mary agreed to:

  • review and shorten the form
  • clarify which fields are optional
  • address email deliverability issues
  • adjust MS Teams settings to reduce joining friction while maintaining security

6.5 Concerns About Confidentiality Misuse

One carer reported that in a CQC meeting at an NHS Trust, raising questions about communication was dismissed as “confidentiality”, preventing meaningful dialogue.
I then encouraged carers to bring such examples into:

  • ToC Star peer reviews
  • Carer involvement forums
  • Local advocacy routes

He noted that misuse of confidentiality is a common and unacceptable barrier and must be challenged.

6.6 Petition on Antipsychotic Medication Research

Carers highlighted concerns about:

  • long-term prescribing of antipsychotics
  • lack of regular medication review
  • inadequate research into long-term effects

A carer shared a petition calling for investigation of psychiatric medications. Richard noted that he had signed and shared it previously.

7. Closing Remarks

Matthew thanked all attendees for their honesty, passion and persistence:

“Carers’ voices shape policies and improve care. That is exactly what this group is here to do.”

Mary acknowledged:

  • the importance of every concern raised
  • the need to better support older carers
  • improvements to ToC communications and meeting accessibility
  • that the next meeting will be in January (provisionally 19th)

The meeting closed with gratitude from carers who said they felt heard, supported, and connected.