Tag Archives: race equality

National Ethnic Mental Health Carer Forum: October Update 2026

By Matthew McKenzie – Chair, National Ethnic Mental Health Carers Forum

Welcome to my October update from the National Ethnic Mental Health Carers Forum. I am Matthew McKenzie, and I chair this forum to give unpaid mental health carers from ethnic minority communities a space to share experiences, question services and connect with people working to improve care.

Our meeting on Friday 30 October brought together presentations and discussion about racial inequalities, the wellbeing of unpaid carers, and the difficulties families face when trying to secure appropriate mental health support.

We heard from Tracy Bignall from the Race Equality Foundation and carer campaigner Agi, who presented findings from a substantial piece of work with carers in East Sussex. Their presentations approached change from different directions: challenging structural racism across institutions, and gathering carers’ experiences to press for improvements within local services.

Throughout the meeting, a shared concern emerged. Carers are often expected to hold care together, yet their knowledge, health and support needs can receive too little attention.

Tracy Bignall – Race Equality, Unpaid Caring and Mental Wellbeing

Tracy Bignall, Director of Policy Engagement at the Race Equality Foundation, introduced the organisation’s work to improve experiences and outcomes for Black, Asian and minority ethnic communities.

She explained that the Foundation works through research, evidence, practical interventions and partnerships to challenge discrimination and disadvantage. Its work extends across health inequalities, family support and other areas affecting people’s lives.

For this forum, Tracy focused on the relationship between unpaid caring, ethnicity and mental wellbeing. She highlighted the pressures caring can place on employment, household finances, physical health and emotional wellbeing. These pressures can become particularly demanding for people balancing caring with paid work, raising children or supporting ageing parents.

Recognising yourself as a carer

An important part of Tracy’s presentation concerned who identifies with the word “carer”.

For some families, supporting a relative is understood primarily as a family responsibility. People may describe themselves as a parent, partner, sibling or adult child without recognising that they are also providing unpaid care.

Language and cultural expectations can influence this recognition. The term “carer” may not translate easily into someone’s understanding of their role, and seeking help may feel unfamiliar or uncomfortable.

This matters because people who do not identify as carers may miss information, assessments, peer support or other assistance. Services need to explain what caring means in ways that connect with people’s everyday lives.

Racism, financial pressure and trust in services

Tracy explained that carers’ wellbeing must be understood within the wider circumstances of their lives.

Financial pressure can reduce opportunities to meet friends, enjoy hobbies or take part in activities that support mental wellbeing. For someone already carrying substantial caring responsibilities, losing those opportunities can deepen isolation.

She also discussed the cumulative impact of racism and discrimination across education, employment, healthcare and later life. These experiences can affect mental wellbeing and influence whether people feel safe approaching services.

Where communities have experienced discriminatory treatment, encouraging people to seek support requires more than providing information. Services must address the experiences that have damaged trust.

Moving towards structural change

Tracy described the Foundation’s work through the London Anti-Racism Collaboration for Health programme, which I had previously contributed to.

The programme brought together partners from the NHS, public health, local government, social care, voluntary organisations and communities. Its purpose was to help institutions take an active anti-racist approach to health inequalities, including examining policies, commissioning and workforce practices.

She also discussed work developing recommendations on structural racism and the wider determinants of health. Housing, the environment and other conditions shape people’s wellbeing, so improving health requires action beyond healthcare appointments.

Tracy then introduced a five-year programme developing anti-racist collaboratives in selected areas. A central feature is the involvement of people with lived experience in identifying priorities and shaping decisions.

The programme creates opportunities for communities and organisations to use evidence, test approaches and share learning. Support for unpaid carers could become a focus where communities identify it as a local priority.

Discussion Following Tracy’s Presentation – Accessibility, Culture and Meaningful Co-production

The discussion brought Tracy’s presentation into contact with the practical concerns carers encounter.

Older carers and isolation

Members raised the needs of older carers who are managing their own health conditions or mobility difficulties while supporting someone else.

There was particular concern about isolation during winter and about support that assumes everyone can travel or participate online.

Tracy clarified that the Foundation primarily works through research, policy, partnerships and support for organisations, rather than providing a general frontline carers service. She described previous work supporting organisations assisting older people and families affected by dementia, including efforts to help smaller community organisations access funding.

The exchange highlighted the importance of sustaining trusted local organisations that already have relationships with carers.

Accessible information requires more than translation

Members questioned whether written translations are enough to make information accessible.

Speaking a language does not necessarily mean someone can comfortably read it. Equally, speaking conversational English does not mean someone can understand a complex letter about care.

The discussion identified a need for different formats, including:

  • Plain language and Easy Read information.
  • Pictures and visual explanations.
  • Spoken information and short videos.
  • British Sign Language and appropriate interpreting support.
  • Clear explanations of available services and how to access them.

Tracy described the Foundation’s use of different formats and work developing information about access to interpreting support within the NHS.

A recurring concern was that people cannot use support they have never been told exists. Accessibility therefore includes how services explain and promote what is available.

Cultural needs and disabled parent carers

Members described situations in which carers felt their cultural needs were poorly understood or dismissed.

Concerns included preferences around intimate personal care, assumptions about family responsibilities, and the experiences of disabled people who also care for someone else.

The discussion challenged the idea that receiving support for your own disability prevents you from being a carer. People can occupy both roles, and services need to understand the whole family situation.

Tracy acknowledged the difficulties and emphasised the importance of personalised care, informed challenge and working through trusted community organisations.

Co-production must influence decisions

Another important question concerned how to make co-production work in practice.

Tracy described an anti-racist co-production resource being developed with partners. She also highlighted a familiar tension: communities may explain clearly how information should be presented, only for institutions to favour their established wording and processes.

The discussion reinforced that asking people to contribute is only part of co-production. Organisations must be willing to give those contributions weight and change their approach.

For carers, this means being able to see how their involvement has affected decisions, communication or care.

Agi – Turning East Sussex Carers’ Experiences into Evidence for Change

Agi presented findings from a report developed through the experiences of unpaid carers supporting adults with serious mental illness in East Sussex.

She spoke about her own long experience of caring and how attending a carers group helped her recognise that role. Through those meetings, she repeatedly heard similar concerns about communication, crisis support, exclusion and difficulties navigating services.

The report grew from a desire to bring those experiences together and present them to the local mental health trust as evidence requiring a response.

The work used a questionnaire containing 15 rated questions and two open-ended questions exploring carers’ concerns and suggestions. Agi described contributions from 71 carers supporting around 80 people.

These were findings from a particular group of respondents. However, many of the issues strongly resonated with those attending our national forum.

Long-term caring and complex responsibilities

Agi described a respondent group containing many women, older carers and people who had been caring for more than 15 years. Many supported adult children.

The report also highlighted complex needs, multiple diagnoses and the additional demands placed on people caring for more than one person.

These findings raised questions about how services assess the scale of someone’s caring responsibilities. Supporting one relative can already involve substantial work; caring for several people can leave very little space for the carer’s own health and wellbeing.

Responsibility without sufficient involvement

A central finding was that carers often felt they carried excessive responsibility while receiving limited professional support.

Respondents described having to advocate repeatedly to secure care, while not always feeling listened to or respected.

This is a serious tension within mental health care. Families may be relied upon to notice deterioration, manage difficulties at home and support recovery, yet struggle to be included when decisions are made.

Agi’s recommendations called for stronger partnership with carers, including practical implementation of the Triangle of Care.

Communication and information sharing

Communication emerged as a major area of concern.

Agi reported that 86% of respondents said they were informed about decisions, meetings or services only sometimes or not at all.

Carers wanted clearer, more consistent communication between teams and with families. They also wanted timely responses, accessible information and less jargon.

Poor communication places additional work on carers. They may have to chase updates, repeat information and work out which service is responsible, while also supporting someone who is unwell.

Consent and confidentiality

The report highlighted the stress created when consent and confidentiality are applied rigidly, particularly during crises or inpatient care.

Agi called for better staff training and clearer communication about what can be shared and how carers can contribute.

An important point in her presentation was that restrictions on disclosing information should not prevent staff from listening to information carers need to provide.

Families may hold essential knowledge about changes in behaviour, previous treatment, medication difficulties or emerging risks. A meaningful partnership needs a reliable route for that information to reach the care team.

Continuity and the importance of care coordination

Agi reported that 90% of respondents felt the person they supported had received insufficient care, while 69% said the person had no care coordinator.

She described continuity as one of the report’s strongest themes. Carers whose relatives had a care coordinator reported better experiences, and the report called for stronger coordination across services.

The value of a coordinator was explained in practical terms: someone who knows the person, understands the family context, follows up concerns and helps connect different parts of the system.

For people who find it difficult to engage with unfamiliar professionals, a trusted and consistent relationship can be particularly important.

Crisis support when families need it most

Agi described concerns about reaching crisis services, lengthy waits and the suitability of busy emergency departments for people experiencing severe mental distress.

Carers wanted responsive support outside normal working hours, clearer routes to help and more home-based interventions where appropriate.

The report also raised concerns about suicide prevention, aftercare and whether plans developed within services were reaching families in a useful form.

The question running through this section was straightforward: when a family reaches crisis point, can they obtain timely help that responds to the situation they are facing?

A broader approach to care and recovery

The report called for more individualised, therapeutic and holistic care.

Carers wanted greater attention to family work, psychological support, housing, financial advice, meaningful activities and complex or neurodiverse needs.

Agi also explained that the existence of a community activity or service does not guarantee that someone can use it. A person may need sustained support and a trusting relationship before they feel able to participate.

Recommendations therefore need to address the steps between offering a service and enabling someone to benefit from it.

Taking the findings to decision-makers

Agi described presenting the report to senior leaders and developing further conversations with the trust, including its Patient Advice and Liaison Service.

She acknowledged that learning how to work with institutional structures and constraints takes time. Her aim remained to secure practical improvements that carers and the people they support could experience.

The report offered a way to move repeated concerns from individual conversations into a collective account that services could examine and respond to.

Discussion Following Agi’s Presentation – Racial Trauma, Diagnosis and Advocacy

Members recognised many of the report’s findings and explored where further attention was needed.

Racial trauma must be explicitly recognised

The discussion raised the importance of trauma-informed care that recognises racism and racial trauma.

Members described how racial inequality, Islamophobia, disability-related barriers and gender could interact with the difficulties already identified in the report.

Agi acknowledged that the largely White respondent group meant racial inequalities had not emerged as a major distinct theme. She explained that trauma-informed support featured in the report, while recognising the need to give racial experiences greater attention.

For our forum, this was an important distinction. A general account of poor care may capture some shared experiences while still missing the specific barriers faced by ethnic minority families.

Late diagnosis and lack of diagnosis

Members also raised concerns about late diagnosis and situations where people remain without a diagnosis despite substantial difficulties.

Families can spend long periods providing support while struggling to secure assessment, recognition or an appropriate response.

The discussion highlighted the uncertainty and exhaustion this creates. Caring responsibilities continue even when a clear pathway into services has not been established.

Agi recognised this as an issue requiring further attention, although it had not been fully captured by the questionnaire.

The role of advocacy

An advocacy contribution to the discussion explored how independent support can help people understand options, raise concerns and challenge decisions.

Members considered advocacy in relation to hospital care, community services, assessments and complaints. There was also interest in further information or training so carers could better understand different forms of advocacy.

The discussion showed that awareness alone is insufficient. People need to know which service is relevant, how to contact it and what support it can provide in their circumstances.

There was particular concern that carers’ perspectives should remain visible in conversations about advocacy and mental health reform.

Planning ahead and recording preferences

Advance choice statements and planning during periods when someone feels able to participate were also discussed.

Examples included recording preferences about family involvement, treatment concerns and cultural needs. Hair care, food and personal care were raised as practical aspects of dignity that can easily be overlooked.

However, members also explained why planning ahead can be difficult. Someone experiencing persistent or recurring distress may have limited opportunities to engage with paperwork or unfamiliar professionals.

This brought the conversation back to continuity. Families may need help from a trusted professional to make planning possible and revisit it over time.

Trust connects people to support

One of the strongest points in the discussion was that numerous available services can still feel inaccessible.

A person experiencing psychosis or severe distress may find it difficult to trust new professionals or engage with another referral. Carers may then be expected to bridge every gap.

Members described the need for consistent relationships that help connect the person, family and different services.

Advocacy, care coordination and community support can each contribute. Their usefulness depends partly on whether the person can access them and whether someone helps make those connections.

Matthew McKenzie – Reflections on Partnership, Consent and Carers’ Relationships

As chair, I was struck by how closely the two presentations connected.

Tracy’s presentation asked us to consider the structures that produce and sustain racial inequalities. Agi’s presentation showed how carers can gather evidence of everyday service difficulties and use it to seek change.

Both made clear that listening needs to lead somewhere.

During the closing discussion, I reflected on the pressure that consent difficulties can place on the relationship between a carer and the person they support.

A carer may be trying to obtain urgent help while also preserving a relationship built over many years. Repeatedly having to intervene can create strain, particularly if the person experiences the carer as part of an unwanted service response.

Services need to recognise that relationship as an essential part of the situation. Carers should receive clear information about available support, opportunities for planning and how concerns can be communicated. These conversations also need revisiting as circumstances change.

There was considerable interest in returning to consent, confidentiality, advocacy and advance planning at a future forum.

The depth of discussion meant that we ran beyond our planned time and could not hear all the scheduled contributions. I am grateful to our speakers and everyone who contributed their experience, questions and ideas.

Continuing the Work

October’s forum reinforced the need for racial equality work and carer involvement to remain closely connected.

Carers need accessible information, culturally responsive support, reliable communication and recognition of their own wellbeing. People receiving care need relationships and services that recognise their individual circumstances, preferences and aspirations.

The meeting also demonstrated the value of bringing national policy work and local carer evidence into the same space. Each can strengthen the other, helping us ask more precise questions about what needs to change and how progress will be recognised.

Thank you to Tracy Bignall and Agi for sharing their work, and to everyone who helped make this such a thoughtful discussion.

I will continue using the National Ethnic Mental Health Carers Forum to bring these experiences together, encourage challenge and keep attention on the changes that matter to carers and their families.

National Ethnic mental health Carer Forum : August Update 2026

By Matthew McKenzie – Chair, National Ethnic Mental Health Carers Forum

The August meeting of the National Ethnic Mental Health Carer Forum brought together unpaid carers, NHS leaders, healthcare professionals, academic researchers, and voluntary sector advocates from across the country. The session provided a vital space to address race equity, systemic racism, lived experience, and ongoing research into minoritised caring experiences.

Matthew McKenzie opened the meeting by welcoming attendees and reinforcing the core purpose of the national forum. He reflected on how the platform has grown into a crucial space where family carers can directly challenge health structures, influence decision-makers, and learn about national policy developments such as the Patient and Carer Race Equality Framework (PCREF). Matthew acknowledged that while discussions around institutional racism and health inequalities can be heavy and emotional, the forum remains a safe, respectful, and healing space dedicated to driving real, actionable change across the NHS.

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2nd Voices & Verses – PCREF Poetry Event

By Matthew McKenzie – Cygnet PCREF Carer Lead & Carer Ambassador

Cygnet PCREF Carer Lead & Carer Ambassador

On 4 August 2026, unpaid carers, professionals and people with lived experience came together at Cygnet Churchill for the second Voices & Verses Carers Poetry Event. The purpose of the afternoon was not simply to read poetry, but to create a safe space where carers could express experiences that are often overlooked within mental health services.

The event formed part of Cygnet’s ongoing commitment to the Patient and Carer Race Equality Framework (PCREF) by exploring how creativity, culture and storytelling can strengthen co-production and improve relationships between carers and services.

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PCREF poem by Matthew McKenzie – Racial Inequality in Mental Health

What does racial inequality in mental health really look like from the perspective of an unpaid carer?

In this powerful spoken-word poem, Matthew McKenzie explores the realities of racism, bias, exclusion, stigma, and unequal treatment experienced by many ethnic communities when accessing mental health services.

Through an A–R alphabet structure, this poem highlights why the Patient and Carer Race Equality Framework (PCREF) matters and why genuine cultural understanding, listening, and inclusion are essential to improving care.

This poem is part of my 100-poem PCREF collection, Unpaid, Unseen and Yet Unbroken, giving voice to the experiences of unpaid carers supporting relatives with mental illness while challenging racial inequalities across mental health services.

Advancing Race Equity Across London’s Mental Health Trusts

On Wednesday 3 June 2026, colleagues from all eight London Mental Health Trusts, alongside carers, service users, community organisations, researchers, regulators and system leaders, gathered at ISH Venues in central London for the Pan London Patient and Carer Race Equality Framework (PCREF) Conference.

Chaired by Erica deti from North East London NHS Foundation Trust (NELFT), the conference provided a unique opportunity to showcase progress, share learning and strengthen London’s collective commitment to race equity within mental health services.

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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

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!

Ethnic mental health Carer Forum Update March 2025

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

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

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Advancing Anti-Racism in Health & Care: The Race Equity Maturity Index

The Race Equality Foundation, which is a UK-based organization that works to tackle racial inequalities in public services and improve outcomes for Black, Asian, and minority ethnic communities. Established in 1987, the foundation focuses on areas like health, housing, and social care, using evidence-based approaches to inform and influence policy, practice, and community initiatives.

The Race Equality Foundation are developing the Race Equity Maturity Index. The Race Equity Maturity Index is a tool developed by London Anti-Racism Collaboration for Health (LARCH) to support organisations in progressing race equity by enabling the tracking and improvement of race maturity levels. The index supports organisations in the actions they take to embed anti-racist practice.

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