Overview of the Forum

The National Ethnic Mental Health Carer Forum is a grassroots group that focuses on addressing the unique challenges ethnic minority carers face in the mental health care system. The forum brings together carers, professionals, and organizations to engage in discussions, share experiences, and advocate for the inclusion of carers’ voices, especially those from minority backgrounds, in mental health policy and practice.

The forum acknowledges the significant role carers play in supporting individuals with mental health issues, especially from ethnic minority communities. It also highlights the issues of systemic and structural racism within the mental health care system and how these issues affect not only patients but also their carers.

I began the discussion by focusing on the importance of anti-racism in the mental health care system, especially as it pertains to ethnic minority carers. I explained that the forum’s main aim was to address the challenges faced by ethnic minority carers in mental health, emphasizing how systemic racism continues to affect these carers and their loved ones.

I highlighted the following key points:

1. Racism as a Structural Issue:
   • Racism in mental health care is not just about individual prejudice, but it is deeply embedded in the structure of the system. This includes policies and practices that disproportionately affect ethnic minority communities.
   • I pointed out that ethnic minority carers face unique challenges in navigating the mental health care system, including being excluded from important discussions about their loved ones’ care. I stressed that carers those who know the patients best often feel their voices are undervalued or completely ignored by mental health professionals.
   • Racial inequalities manifest in various ways, from higher rates of detention under the Mental Health Act to the overuse of restraint and coercive care practices. These practices disproportionately affect ethnic minority communities, and the role of carers is often marginalized in these processes.
2. Importance of Carers’ Voices:
   • I made it clear that carers’ voices must be heard when it comes to anti-racism efforts in mental health services. Carers have the ability to provide crucial context about their loved ones’ needs, especially cultural needs, that clinicians may overlook or misinterpret.
   • It was crucial to stress that carers are not just supporters of the patient; they are knowledge holders with unique insights into the patient’s condition, behaviors, and needs. Without including them, mental health services risk misunderstanding cultural expressions of distress, leading to misdiagnosis or inappropriate treatment.

Requests for Future Presentations from Prof. Subodh Dave and Ruth:

1. Greater Focus on Mental Health Policy Reforms:
   • Attendees requested further discussions on the mental health policy reforms and the steps being taken to ensure that these changes address racial disparities. They expressed interest in hearing more about the impact of recent changes and how policy could be further improved to support ethnic minority communities.
2. Practical Examples of Anti-Racism Initiatives:
   • Participants asked for real-world examples of anti-racism initiatives being implemented within mental health services. They wanted to hear about successful case studies where changes have been made and how those changes have positively impacted carers and patients.
3. Integration of Carers in Mental Health Decision-Making:
   • There was a strong interest in exploring how carers can be better integrated into decision-making processes at a systemic level. Attendees wanted Prof. Dave and Ruth to discuss strategies to ensure that carers are not just involved in individual care but are included in the larger policy decisions that shape mental health services.
4. Cultural Competency Training for Professionals:
   • Attendees suggested that cultural competency training should be a central focus in future discussions. They wanted to understand how mental health professionals are being trained to understand the unique cultural contexts of ethnic minority communities and how this is being addressed through institutional change.
5. Long-term Strategy for Addressing Racial Disparities:
   • Attendees requested a long-term strategy for addressing racial disparities in mental health services. They were particularly interested in future initiatives, including how diversity in the workforce and access to care for ethnic minority communities would evolve over time.

Questions Asked During the Discussion:

1. How can we ensure that mental health professionals take racial disparities seriously?
2. What role can ethnic minority carers play in tackling systemic racism in mental health services?
3. What are the next steps in ensuring that ethnic minority carers are involved in mental health policy at every level?
4. Can you discuss the intersection of race and mental health legislation and how it specifically affects ethnic minority carers?
5. How can cultural competency training be integrated into everyday practice for mental health professionals?

Presentation by Dr. Patrick Nyikavaranda: Policy, Equity & Carer Engagement

Next up to speak was Dr. Patrick Nyikavaranda is a Senior Research Fellow and the Public Involvement and Engagement Lead at the NIHR Mental Health Policy Research Unit within the Division of Psychiatry at University College London (UCL). His work focuses on improving mental health policy through research that aims to address equity and inclusion in mental health services.

Dr. Nyikavaranda has a strong commitment to engaging carers and patients with lived experience in the research process, ensuring that their voices are central to shaping mental health care policies and creating more equitable services. He is particularly focused on addressing the systemic racial disparities in mental health care and promoting cultural competence among mental health professionals.

Key Points from Dr. Nyikavaranda’s Presentation:

1. Overview of the Policy Research Unit:
   • Dr. Nyikavaranda explained the work of the Policy Research Unit in Mental Health, which is focused on generating evidence to influence mental health policy and improve mental health services.
   • The unit works with a range of stakeholders, including carers, to produce evidence that informs the development of policy aimed at addressing racial disparities and improving care for ethnic minority communities in the mental health system.
2. Carer Engagement:
   • A central theme of Dr. Nyikavaranda’s presentation was the importance of involving carers in mental health research and policy. He emphasized that carers are essential partners in the mental health care process and their insights and lived experiences are crucial in shaping equitable services.
   • Carers’ lived experiences offer unique perspectives on the challenges faced by patients, especially those from ethnic minority backgrounds, and their input is invaluable in creating policies that are more inclusive and culturally competent.
3. Addressing Equity in Research and Policy:
   • Dr. Nyikavaranda spoke about the persistent inequities in mental health services, particularly for ethnic minority patients. He discussed the importance of research that focuses on equity, specifically how racial disparities impact access to services, diagnosis, treatment, and outcomes.
   • He highlighted the need for inclusive research that represents the voices of carers, especially those from underrepresented communities. Engaging carers in the research process ensures that the evidence produced reflects the real-world needs of patients and carers.

After Dr. Nyikavaranda’s presentation, the session continued with a discussion and Q&A where forum participants had the opportunity to ask questions and provide reflections on the topic of policy, equity, and carer engagement in mental health.

Updates from Norfolk and Suffolk Foundation Trust

During the forum representatives from Norfolk and Suffolk Foundation Trust (NSFT), provided updates on the progress made in involving carers, particularly those from ethnic minority backgrounds, in improving mental health services and addressing racial disparities.

The key updates from Norfolk and Suffolk Foundation Trust were as follows:

1. Carer Engagement:
   • Norfolk and Suffolk Foundation Trust has made significant strides in engaging carers in the mental health care process. They have created platforms that allow carers to voice their experiences and contribute to the care planning of their loved ones. This is part of a broader effort to embed carers’ perspectives in all levels of service delivery.
   • The Trust has developed a Carers Charter, which is based on the Triangle of Care framework, ensuring that carers are recognized as equal partners in the care process. This Charter outlines the six key standards for improving the quality of care, including the involvement of carers and recognition of their expertise.
2. Cultural Sensitivity and Support:
   • The Trust is working to ensure that mental health services are culturally sensitive and cater to the needs of ethnic minority communities. There is a focus on improving communication between health professionals and carers, particularly in regards to understanding the cultural needs of ethnic minority patients.
   • The Trust is looking to enhance its support for carers, particularly those from diverse backgrounds, by offering tailored resources and support structures. They are also aiming to create more inclusive spaces for carers to come together and share their experiences and challenges.
3. Co-Production with Carers:
   • Norfolk and Suffolk Foundation Trust is adopting a co-production approach, meaning that they are working collaboratively with carers and service users to design and deliver services. This approach allows carers to be actively involved in shaping policies, procedures, and the overall care framework.
4. Commitment to Tackling Racial Disparities:
   • The Trust is also committed to tackling racial inequalities in mental health care. They are working to ensure that ethnic minority patients and their carers have access to equitable services. This includes addressing issues such as disproportionate detention rates, increased use of restraint, and the underrepresentation of ethnic minorities in mental health research.
5. Feedback and Reflection:
   • Attendees were encouraged to provide feedback on the Trust’s progress, particularly on how well they felt carer voices are being integrated into mental health services. Jodie and Annie invited participants to share their thoughts and experiences to further improve services and strengthen the carer-professional relationship.

This section of the forum underscored the importance of collaborative engagement between mental health services and carers. The updates from Norfolk and Suffolk Foundation Trust highlighted how a carer-centered approach, especially one that includes the voices of ethnic minority carers, can lead to more inclusive, effective, and culturally competent care.

The next presentation was focused on Ethnic Carers and Poetry, with an emphasis on how poetry can be used as a form of expression for ethnic minority carers in mental health. The session was led by Matthew McKenzie, the facilitator of the forum.

Presentation: Ethnic Carers and Poetry

Presenter: Matthew McKenzie

In this presentation, I explored the therapeutic value of poetry in expressing the lived experiences of ethnic minority carers. I emphasized how poetry can serve as a tool to communicate the emotional burden, grief, and frustration that carers often face in mental health settings, particularly when dealing with the added complexities of racism and systemic barriers.

Key Points Covered:

1. Poetry as a Voice for the Unheard:
   • I discussed how ethnic minority carers, often feeling invisible within the mental health system, can use poetry to reclaim their voice and assert their lived experiences. Poetry provides a unique space for expression, where carers can share their struggles, advocate for their loved ones, and address the challenges they face in a system that may not always recognize their needs or contributions.
2. Cultural Expression through Poetry:
   • Poetry also allows carers to engage with their cultural heritage. For many ethnic minority carers, it serves as a means to reconnect with their traditions, cultural identity, and community. I emphasized that this form of expression can be a powerful way to resist silence and challenge marginalization within both the mental health system and society at large.
3. A Call for Carers to Share Their Stories:
   • I presented how important it is for carers to share their own experiences through poetry, noting that their personal stories could be transformative not just for them, but for others who face similar struggles. The opportunity to contribute their voices to the forum’s upcoming poetry collection titled “Unpaid, Unseen, Yet Unbroken” was presented as a way for carers to gain recognition and contribute to the ongoing dialogue on mental health and anti-racism.
4. Poetry as Protest and Healing:
   • Poetry was described as not just a form of personal expression, but also a form of protest against the invisibility and marginalization that ethnic minority carers often face in the mental health system. It was highlighted as a means to challenge institutionalized racism and raise awareness about the specific barriers faced by carers from ethnic minority backgrounds.
5. Invitation for Future Submissions:
   • As part of an ongoing initiative, I encouraged carers to submit their poems for inclusion in the collection. The goal was to amplify their voices, giving them an opportunity to be heard and to showcase the power of cultural expression in advocating for change.

This presentation marked an important moment in the forum, as it not only provided a space for reflection and emotional expression but also offered carers a creative outlet for advocacy and empowerment. By using poetry, carers could challenge the norms, raise awareness about the struggles they face, and ultimately drive systemic change within the mental health system.

brief update By Matthew McKenzie – Chair of the National ethnic mental health carer forum

The January 2026 Ethnic Carer Forum brought together carers, people with lived experience, NHS trusts, community leaders, and national partners to reflect honestly on racial inequalities in health and social care, and to explore how systems can move from good intentions to real change.

The forum continues to act as a safe and challenging space for ethnically diverse and marginalised carers, including Black, Asian, Traveller, LGBTQ+ and other communities, to share experiences, influence policy, and hold organisations to account .

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Opening the session, Matthew McKenzie (mental health carer and forum founder) reflected on long-standing inequalities faced by minority carers. He highlighted:

• Persistent mistrust of mental health systems, rooted in lived experience and historical harm
• Patchy engagement by services, despite strong national rhetoric
• Power imbalances that leave carers feeling unheard or excluded

The forum was originally created simply to connect marginalised carers with one another. Today, it also plays a vital role in scrutinising national frameworks, such as the Patient and Carer Race Equality Framework (PCREF), and ensuring carers’ voices shape implementation rather than being added as an afterthought.

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Community Voice and National Influence

Race and Health Observatory

Bren, a community volunteer and member of the NHS Race and Health Observatory stakeholder engagement group, shared insights into national efforts to address racial health inequalities.

The NHS Race and Health Observatory: Purpose and Limits

Turning to his national role, Bren explained that the NHS Race and Health Observatory was established in 2021 and funded by the NHS until at least 2027. Its purpose is to:

• Examine racial inequalities affecting both communities and the NHS workforce
• Operate independently, rather than as an internal NHS programme
• Focus on solutions, not just reports and data

He outlined several key areas of current work:

• Small Grants Pilot – supporting community-led initiatives, while acknowledging that funding levels are modest and only a starting point
• Community Participation and Co-production Resource – aimed at helping organisations engage communities more meaningfully and consistently
• Action Resource Platform – an emerging online space intended to bring together data, case studies, and learning in one place

However, Bren was clear that these initiatives are still evolving and must be continuously shaped by lived experience, not institutional convenience.

A Critical Question: Where Are Carers?

One of the most important moments in Bren’s update came when he openly questioned whether carers’ voices are adequately represented within national stakeholder structures including the Observatory itself.

He noted that while there is growing representation from professionals, young people, and community organisations, carers can easily be overlooked unless explicitly prioritised. Bren committed to:

• Reviewing current stakeholder representation
• Raising the absence of carer voices within the Observatory
• Feeding back to the forum on what action is taken

This moment strongly aligned with the forum’s wider purpose: holding national bodies to account while remaining constructively engaged.

Listening as an Act of Power-Sharing

Throughout his update, Bren returned repeatedly to the theme of listening not as a soft skill, but as a deliberate act of power-sharing. He challenged NHS leaders and organisations to move beyond engagement that is performative or extractive.

He stressed that real accountability means:

• Showing communities what has changed as a result of their input
• Being honest when progress is slow or blocked
• Measuring impact through people’s lived experience, not just organisational metrics

As Bren put it, communities do not just want to be consulted they want to see evidence that their voices matter.

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Local NHS Action: Gloucestershire Health and Care NHS Foundation Trust

Gloucestershire Health and Care NHS Foundation Trust: Refreshing PCREF with Honesty and Challenge

The update from Gloucestershire Health and Care NHS Foundation Trust offered a candid and important snapshot of what it looks like when an NHS trust acknowledges where progress has stalled and begins the difficult work of rebuilding momentum around race equality and co-production.

Delivered by Ruth, who joined the Trust’s Quality Assurance Directorate in late 2024, the presentation focused on the reinvigoration of the Patient and Carer Race Equality Framework (PCREF) after a period where activity had slowed due to leadership changes and competing pressures.

A central part of the Trust’s renewed PCREF work was a recent Gloucestershire engagement event, which brought together NHS leaders, community members, carers, and national partners to openly explore race inequality, power, and accountability in mental health services.

The event included a powerful contribution from Matthew McKenzie, who presented on how carers should be important to PCREF and the long-term impact this has on trust between services and communities. His contribution was not framed as abstract theory, but rooted in lived experience as a mental health carer and long-standing advocate.

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PCREF Matters in Gloucestershire

Ruth began by grounding the discussion in national and local evidence. Despite higher prevalence of mental health need, people from Black and ethnically diverse backgrounds continue to experience:

• Lower access to mental health treatment
• Poorer recovery rates from talking therapies
• Higher likelihood of restrictive practices, including restraint
• Greater mistrust of services, particularly among families and carers

In Gloucestershire, these national patterns sit alongside a population that is predominantly white, which can make racial inequalities easier to overlook or minimise. Ruth was clear that small numbers do not reduce responsibility in fact, they increase the risk that minority experiences become invisible in data and decision-making..

Data: Necessary but Not Sufficient

Data featured heavily in the update and in the discussion that followed. The Trust is working to improve:

• Ethnicity recording, including challenging the routine use of “not known”
• Disaggregation of data on restrictive practices
• Understanding access, experience, and outcomes across services

However, Ruth was clear that data alone does not tell the full story. She spoke about the need to “scratch beneath the surface” and combine quantitative data with lived experience, narrative, and community insight, particularly where numbers are small but impact is significant.

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Universal Care Plan (London)

Universal Care Plan (UCP): Promise, Possibility and Carer Challenge

Hayley Blanchard introduced the Universal Care Plan (UCP), currently being rolled out across London as a shared digital record enabling people to document what matters most to them in health and care.

The session on the Universal Care Plan (UCP) was one of the most interactive, challenging, and emotionally charged discussions of the Ethnic Carer Forum. While the tool was presented as a positive step towards personalised and joined-up care, carers and community representatives were clear that digital innovation must not repeat old inequalities in a new format.

The update was delivered by Hayley, a community nurse by background and consultant supporting the UCP programme in London. Her presentation outlined the intention behind the tool but it was the questions from carers that shaped the real substance of the discussion.

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What Is the Universal Care Plan?

The Universal Care Plan is a shared digital record, currently available across London, designed to bring together key information about a person’s health, care, and what matters to them all in one place.

About

The UCP aims to:

• Reduce the need for people to repeat their story to multiple professionals
• Capture personal, cultural, and practical information alongside clinical needs
• Support more joined-up decision-making across services
• Improve coordination in urgent situations (e.g. ambulance or hospital admission)

It is intended for people of all ages and conditions, including those with mental health needs, long-term conditions, and caring responsibilities.

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Why the UCP Was Brought to the Forum

Hayley explained that the UCP team is running targeted engagement with ethnically diverse communities, recognising that digital tools often fail those who already experience exclusion, mistrust, or barriers to access.

Below You can book for the event to submit your views, its Free to book.

The forum was invited to:

• Scrutinise the UCP from a carer and lived-experience perspective
• Identify cultural, ethical, and safeguarding concerns early
• Influence how the tool develops, rather than responding once it is fully embedded

This framing was welcomed but it did not shield the UCP from robust challenging questions shown below.

1. “Who was this tool designed for clinicians or communities?”

Several carers questioned whether the UCP had been designed primarily from a medical lens, rather than co-produced with people who use services and those who care for them.

2. “Where is co-production and when does it actually start?”

Carers asked whether engagement was happening after development, rather than alongside it.

Key concerns included:

• Whether carers and service users had shaped the structure, language, and assumptions of the UCP
• Whether feedback would lead to real changes, or simply be “noted”
• How communities would know what had changed as a result of their input

3. “What about people who don’t have insight?”

One of the most important safeguarding questions came from carers supporting people with serious mental illness or fluctuating capacity.

Carers asked:

• What happens if someone records decisions that do not reflect their best interests during periods of poor insight?
• How are carers expected to raise concerns if they cannot view or edit the care plan?
• What safeguards exist to prevent harm when information is inaccurate or incomplete?

5. “Who sees this information and where does it go?”

Trust and data sharing were major concerns, particularly for communities with a history of surveillance, discrimination, or misuse of information.

Carers asked directly:

• Which professionals can access the UCP?
• Can information be shared beyond the NHS?
• How is consent managed and reviewed over time?

For some participants, uncertainty around data use undermined confidence in the tool, even if its intentions were positive.

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West London NHS Trust: PCREF in Practice

The update from West London NHS Trust offered one of the most honest and grounded reflections of the day on what it actually takes to implement the Patient and Carer Race Equality Framework (PCREF) in a large, complex mental health organisation.

Presented jointly by Linda and pcref carer lead, the update stood out because it did not present PCREF as a finished product. Instead, it described PCREF as ongoing, difficult work, shaped by challenge, learning, and persistence — particularly from carers and people with lived experience.

Building PCREF With Carers and Lived Experience From the Start

Linda explained that West London’s PCREF journey began before her arrival at the Trust, with an intentional decision to embed carers and people with lived experience at leadership level, not just in consultation roles.

From the outset, the Trust established:

• A PCREF steering group with a dedicated carer lead (Debbie)
• A lived experience lead, ensuring parity of voice
• A commitment to co-produce priorities, not simply validate pre-written plans

This early structural choice shaped everything that followed — particularly the Trust’s willingness to sit with discomfort and challenge.

Listening to Learn: Turning Experience Into Action

Throughout 2024, the Trust undertook extensive “listening to learn” work across services. These sessions gathered feedback from carers, patients, and communities about their experiences of mental health care, racism, and exclusion.

Rather than treating this feedback as anecdotal, West London used it to co-produce:

• A PCREF action plan
• Identified priorities for change
• A shared understanding of where harm was occurring — not just where policy said it shouldn’t

This process also highlighted how often data already existed, but had not been meaningfully used or shared.

Data: Knowing the Problem Is Not the Same as Acting on It

West London were open about one of the Trust’s biggest challenges: data transparency and usability.

They acknowledged that:

• The Trust knows Black, African Caribbean and South Asian communities have poorer outcomes and higher drop-out rates, particularly in talking therapies
• Despite this, creating a clear, accessible PCREF dashboard has been slow and frustrating
• Without visible data, communities cannot effectively hold the Trust to account

This honesty resonated strongly with carers, many of whom noted that “knowing the data exists” is not the same as being able to see or use it.

Racial Trauma: Naming the History Behind Mistrust

One of the most powerful elements of the West London update came from the PCREF carer lead account of the racial trauma workshops, which she co-designed and delivered with Linda and colleagues.

These sessions did not begin with policy or frameworks. Instead, they began with history acknowledging the deep roots of mistrust in health systems.

Debbie described how the workshops explored:

• The legacy of slavery and colonial medicine
• Unethical medical experiments on Black and South Asian communities
• How generational trauma shapes present-day interactions with services

Examples such as the Tuskegee experiments and other lesser-known abuses were used not to shock, but to contextualise fear, resistance, and disengagement often labelled as “non-compliance”.

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Planning Meaningful Speaker Engagement for 2026

Matthew McKenzie on Shaping the Ethnic Carer Forum Programme

As part of planning for the Ethnic Carer Forum in 2026, Matthew McKenzie presented a structured proposal focused on how speakers and themes should be selected, and why this matters for ethnic minority carers

Matthew explained that the forum’s strength lies in its ability to bring together carers, lived experience voices, community organisations, and systems leaders in a way that feels meaningful rather than tokenistic.

Key Themes Proposed for 2026

Matthew’s presentation outlined 15 proposed themes for the year to invite speakers to the forum for engagement, each linked to clear reasons why they matter to ethnic minority carers. These include:

• Racism and mental health beyond surface-level conversations
• PCREF in practice, focusing on what has actually changed for carers
• Regulation, inspection, and accountability, including complaints processes
• Police involvement, crisis response, and Section 136
• Black mental health and carer experience
• South Asian, Muslim and faith-context carers
• Older adults and intergenerational trauma
• Children, young people, and parent carers
• Carers, poverty, and the benefits system
• Immigration status, NRPF, and mental health
• Co-production: when it works and when it doesn’t
• Workforce racism and its impact on carers
• Alternatives to crisis and coercive care
• Complaints, justice, and redress
• Examples of “what good looks like” — models that have delivered real change

As one participant reflected: “If people can’t see the change, they won’t believe it’s happening