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.

Minute of Silence: Professor Jason Ardey

The forum opened with a poignant minute’s silence led by Debbie Best in honour of the life, legacy, and memory of Professor Jason Ardey following his passing.

Members paused to reflect on his landmark contributions to racial equality, education, and social justice. His legacy of challenging institutional barriers and amplifying minoritised voices continues to inspire the core work and mission of the forum.

Reflections on Race Equality: Norfolk and Suffolk NHS Foundation Trust (NSFT)

Speakers: Cath Byford (Deputy Chief Executive / Chief Nurse / Director of Patient Experience) & Annie (PCREF Carer Lead)

Cath Byford opened the trust’s update by offering an open and unvarnished reflection on NSFT’s ongoing race equity journey. Acknowledging that the trust has faced significant scrutiny and structural challenges over recent years, Cath emphasized that building genuine trust with minoritised communities requires moving beyond policy statements to deliver measurable, lasting systemic change. She explained that over the past 18 months, NSFT has embarked on a deliberate path to rebuild its patient experience framework, ensuring that health equity, anti-racism, and lived experience are embedded into every layer of clinical governance and strategic planning.

PCREF Carer lead Annie brought a vital lived-experience perspective to the presentation, sharing how the trust is working to bridge the gap between executive decision-making and the everyday realities of unpaid family carers. Together, they outlined the core pillars driving NSFT’s current equity transformation:

• Dedicated Health Equity Team & Clinical Reform: The trust has invested heavily in establishing a specialist Health Equity team, created to audit clinical pathways and directly confront institutional disparities. The team’s operational focus is centered on dismantling disproportionate clinical interventions, specifically working to significantly reduce the use of physical and chemical restrictive practices, address the over-representation of Black and minority ethnic service users detained under the Mental Health Act, and monitor and reduce the disproportionate application of Community Treatment Orders (CTOs).
• Diversifying Governance & Locality Councils: Cath shared candidly that an internal review of the trust’s governance structures revealed a stark under-representation of global majority voices across its five locality councils. Recognizing that local health strategies cannot succeed if key decision-making bodies remain ethnically unrepresentative, NSFT has launched targeted community outreach initiatives designed to recruit diverse community members, carers, and experts by experience onto these councils to ensure grassroot priorities shape service delivery.
• Workforce Transformation & Reciprocal Mentorship: Highlighting broader organizational culture, Cath detailed how workforce race equity has been integrated into the trust’s 12 major transformation programmes. A central highlight of this work is the Transformational Reciprocal Mentorship Programme, coordinated by Ethan Charles, which was recently recognized nationally for healthcare excellence. The initiative pairs senior trust executives and board members with staff members from minoritised backgrounds in a reciprocal learning partnership, helping leadership understand systemic workplace barriers while creating clear pathways for career progression and equity across the trust.

Questions and Discussion

Q1. How is Norfolk and Suffolk NHS Foundation Trust embedding cultural awareness within service evaluation and PCREF implementation?

A question was raised regarding how patient and carer feedback is systematically captured, and whether cultural awareness is meaningfully integrated into trust surveys, service audits, and PCREF rollouts rather than treated as a tick-box exercise.

Response:

Cath Byford acknowledged that standard feedback mechanisms often fail to capture the nuanced experiences of minoritised communities. She explained that the trust is refining its data collection tools alongside its Health Equity team and local carers to ensure feedback loops directly inform clinical practice and PCREF operational plans.

Q2. How are intersectional barriers such as neurodivergence and criminal justice involvement being addressed for minoritised families?

A detailed discussion focused on the severe intersectional challenges faced by minoritised families, particularly where mental health conditions overlap with neurodivergence or involvement in the criminal justice system. Concerns were raised that carers face immense financial and logistical hurdles to attend meetings or advocate for relatives.

Response:

Cath and Annie agreed that intersectionality must be at the forefront of service design. The panel emphasized that research teams and trust steering groups must formally budget for carer access needs—including funding for sitters, respite, and transport—to enable equitable participation from grassroot carers.

Q3. How can NHS trusts move away from generic terminology like “BAME” to build trust with specific communities?

Contributors stressed the importance of discarding outdated, homogenized labels such as “BAME” in favor of recognizing specific ethnic and cultural identities. Members questioned how trusts plan to engage directly with local grassroot organizations rather than relying on top-down communications.

Response:

The presenters affirmed that language matters deeply in establishing trust. NSFT is focusing on direct partnerships with Voluntary, Community, and Social Enterprise (VCSE) sector organizations that already hold trusted relationships within specific cultural communities, ensuring engagement is authentic and localized.

Keynote Address: Competence, Leadership, and Race Equity

Speaker: Lord Victor Adebowale (Chair, NHS Confederation & Founder, NHS Race and Health Observatory)

Lord Victor Adebowale delivered a sweeping keynote address that fundamentally challenged traditional healthcare perspectives on race equity, anti-racism, and organizational accountability. Moving the discussion away from performative pledges and symbolic gestures, Lord Victor framed racial equity not as an optional moral, social, or political stance, but as a core requirement of clinical and operational competence.

He began by reframing the definition of leadership within the healthcare ecosystem, asserting that unpaid family carers act as leaders every single day. Through their daily advocacy, continuous care coordination, and tireless protection of vulnerable family members, carers demonstrate true leadership long before health systems officially acknowledge their presence.

Lord Victor drew stark attention to the persistent impact of the Inverse Care Law, illustrating how individuals from the global majority routinely receive poorer quality services and face worse health outcomes despite presenting with the highest levels of clinical need. He warned that system-wide failure to serve minoritised families cannot be viewed as an isolated issue; when a healthcare trust tolerates substandard, culturally unsafe care for Black and ethnic minority service users, the overall quality, safety, and effectiveness of care inevitably degrades for every patient using that service.

A central theme of his address focused on moving the national conversation away from an endless reliance on individual conscious or unconscious bias training. Lord Victor argued that over-emphasizing implicit bias often allows healthcare systems to evade operational accountability. Instead, anti-racism must be treated as a strict benchmark of professional capability. Leaders and clinicians who fail to deliver equitable care across diverse populations are not simply displaying personal bias they are actively choosing to operate incompetently. He insisted that health trust boards must begin holding executive leadership to the exact same rigorous accountability standards for race equity as they do for clinical safety and financial management.

Furthermore, Lord Victor emphasized that unpaid family carers represent the primary early-warning system within the entire healthcare structure. Carers are routinely the first to spot subtle signs of deterioration or service failure, often weeks before clinical teams become aware of an emerging crisis. He condemned the institutional practice of dismissing carer insights under the blanket rationale of “patient confidentiality,” warning that using information governance as an excuse to shut out family members discards the most valuable clinical intelligence available and actively compromises patient safety.

Four Rules for Authentic Community Engagement

To guide health trusts and Integrated Care Boards (ICBs) toward genuine structural reform, Lord Victor outlined four non-negotiable rules of engagement when working alongside minoritised communities and family carers:

1. Listen with Evidence of Being Heard: Listening exercises and consultation events are entirely meaningless unless community members and carers are provided with clear, practical evidence showing exactly how their feedback altered decisions, policies, or service delivery.
2. Transfer Real Power: Authentic engagement requires a fundamental shift in traditional power dynamics. Healthcare institutions must share authority and transfer tangible resources so that minoritised communities are empowered to act independently and lead changes themselves.
3. Equal Partnership over Superficial Co-production: Health systems must move beyond tokenistic co-production exercises, which often amount to seeking quick feedback on pre-written plans—and commit to long-term, equal governance partnerships where carers sit at the decision-making table from inception to evaluation.
4. Describable and Transparent Outcomes: Any service alteration or policy development resulting from community engagement must produce clear, tangible outcomes that are easily understood, described, and validated by the community itself, rather than hidden behind dense NHS jargon.

Matthew’s Question

Matthew raised concerns regarding the persistent barriers unpaid carers face—specifically questioning how health systems can stop excluding ethnic minority carers through medical jargon and information gatekeeping (such as using “confidentiality” as an excuse to exclude families), and how trusts can be held genuinely accountable under frameworks like the Patient and Carer Race Equality Framework (PCREF).

Lord Victor Adebowale’s Response

Lord Victor addressed this by framing race equity and carer involvement as a matter of operational and clinical competence rather than optional policy:

• Reframing Carer Insights: He emphasized that family carers are the primary early-warning system in healthcare who spot signs of deterioration weeks before clinical teams. Dismissing carer insights using “confidentiality” throws away vital clinical data and actively compromises patient safety.
• Competence over Bias: He stated that leaders who fail to provide equitable care to minoritised families or exclude carers are choosing to operate incompetently. Boards must hold executive leadership accountable for race equity to the exact same standards as clinical safety and financial management.
• Rules of Engagement: He outlined that genuine engagement requires health trusts to listen with evidence of being heard, transfer real power to communities, build equal partnerships, and deliver transparent, describable outcomes that the community can easily see and verify.

Questions and Discussion

Q1. Why are Black men in mental health services disproportionately subjected to high doses of medication rather than holistic therapies?

A critical question was raised regarding why Black men entering acute mental health pathways are frequently managed through high-dose psychiatric medications and prolonged admissions rather than being offered timely talking therapies, early intervention, and holistic community support.

Response:

Lord Victor emphasized that over-reliance on medication and restrictive practices reflects systemic clinical failure and risk-averse institutional cultures. He stressed that true clinical competence requires services to offer culturally appropriate psychological interventions and preventative care early in the care pathway, rather than defaulting to chemical containment during crises.

Q2. How can healthcare systems better support the emotional, financial, and legal well-being of long-term family carers?

A forum contributor shared their personal experience as a sole carer managing a mother with vascular dementia and Alzheimer’s in rural Gloucestershire. They highlighted the severe isolation, legal hurdles, and financial exhaustion experienced by carers, asking directly: “Who is caring for the carer?”

Response:

Lord Victor and forum members acknowledged the systemic neglect of carer well-being. The discussion highlighted that supporting carers is a clinical necessity, not an optional luxury. Practical signposting was shared, pointing members toward specialist support networks and helplines, including Dementia UK, while calling on Integrated Care Boards (ICBs) to fund dedicated carer respite initiatives.

Research Updates: Amplifying Carer Voices

1. Black Carers and Learning Disability Services

Presenter: Lorraine Heath (Trainee Clinical Psychologist, University of Southampton)

Lorraine Heath introduced her doctoral research project exploring the complex, intersectional barriers that Black family carers encounter when navigating mental health and learning disability services on behalf of their relatives. Lorraine explained that while national policy increasingly highlights health equity, Black families caring for loved ones with learning disabilities continue to face profound structural, institutional, and cultural hurdles. These challenges frequently result in delayed access to vital support, misdiagnosis, or total exclusion from essential statutory services.

The research focuses on capturing the lived realities of Black carers across both child and adult services including Child and Adolescent Mental Health Services (CAMHS) and adult community mental health teams to understand how healthcare systems can better support families before crisis points occur. Lorraine emphasized that unpaid Black carers often have to act as fierce advocates, interpreters of complex care systems, and primary safety nets, often without receiving adequate recognition or formal support from service providers.

• Research Objectives: The study aims to map out the specific diagnostic pathways, institutional barriers, and negative experiences that Black families face when seeking care. By identifying where services fail to provide culturally sensitive, timely support, the project seeks to build a robust evidence base to influence future clinical practice, service design, and commissioning standards across NHS mental health and learning disability teams.
• Methodology & Care for Participants: Recognizing that discussing institutional barriers and negative service interactions can be emotionally draining, the study utilizes 90-minute flexible online interviews via Microsoft Teams, designed around the participant’s schedule and comfort. To ensure lived experience is meaningfully valued rather than exploited, all participants receive a £25 shopping voucher as a token of appreciation for their time and contribution. Furthermore, strict data protection protocols are embedded throughout the study to guarantee complete anonymity for all participating carers.

Lorraine invited members of the forum to share details of the study within their local networks, encouraging Black family carers with relevant lived experience to participate and ensure their voices shape future mental health provision.

Questions and Discussion

Q1. How will the study protect Black carers from re-traumatisation when discussing negative service experiences?

Forum members inquired about the safeguarding protocols in place for participants who may experience distress while recalling challenging interactions with health and social care services.

Response:

Lorraine confirmed that emotional safety is central to the study design. Pre-interview briefings, built-in debriefing sessions, and immediate signposting to culturally sensitive psychological support are provided to all participants.

2. Supporting the Supporters: Integrating Informal Carers

Presenter: Carol Garbutt (King’s College London)

Carol Garbutt introduced her master’s research project, Supporting the Supporters, which addresses the critical breakdown in communication and partnership between professional healthcare services and informal family carers. Carol explained that despite longstanding national directives highlighting the importance of involving family members, unpaid carers from minoritised backgrounds are routinely sidelined, excluded from decision-making, or left without basic support when supporting a relative through the mental health system.

The study explores the organizational culture, professional attitudes, and systemic practices that dictate how informal carers are treated across clinical settings. Carol highlighted that while professional staff often view safety and treatment solely through the lens of individual patient care, unpaid carers are the ones managing day-to-day crises, monitoring medication side effects, and providing essential emotional and practical stabilization at home. Failing to integrate these informal support networks into formal care planning not only places an overwhelming burden on family members, but actively compromises patient safety and recovery.

• Research Scope & Focus: The study focuses on gathering perspectives from across the mental health ecosystem including professional healthcare workers, clinical staff, patient advocates, and voluntary sector leaders. By examining how professionals define, view, and interact with family carers, the research aims to pinpoint the precise organizational obstacles and misalignments that lead to carer exclusion.
• Project Goals & Impact: The overarching objective is to build a robust, practice-informed evidence base that pushes mental health trusts to embed family carers into standard clinical workflows. Carol emphasized that true integration requires moving beyond informal signposting toward establishing clear communication protocols, ensuring carers are formally identified at the point of admission, and treating them as equal, valued partners in care planning and discharge processes.

Questions and Discussion

Q1. How does the research address instances where professionals hide behind confidentiality rules to exclude carers?

Members highlighted that staff frequently cite information governance to withhold basic care updates from family members.

Response:

Carol explained that her study specifically examines professional attitudes and organizational policies surrounding communication. The goal is to highlight best-practice frameworks that allow clinicians to share essential care planning details with families while respecting patient rights.

3. Partners’ Experiences of Gynaecological Cancer

Presenter: Lara (Trainee Clinical Psychologist, University of Hertfordshire)

Lara introduced her doctoral research exploring the lived experiences of partners supporting individuals diagnosed with gynaecological cancer.

• Research Focus: Examining the complex emotional, physical, relational, and financial impacts on partners navigating a gynaecological cancer diagnosis.
• Project Goal: Tackling cultural taboos and stigma surrounding gynaecological health, providing evidence to help cancer charities and NHS trusts design tailored psychological and practical support packages for partners.

Questions and Discussion

Q1. How does the study account for cultural stigmas surrounding gynaecological health within minoritised communities?

Carers noted that discussion of gynaecological health remains heavily stigmatized in many ethnic communities, which can prevent partners from seeking external help.

Response:

Lara acknowledged these cultural complexities, explaining that the interview frameworks are designed to be sensitive to diverse cultural norms, allowing participants to share their experiences in a safe, non-judgmental environment.

Creative Advocacy: Combatting Gatekeeping Through Poetry

Matthew McKenzie presented a video poem developed as part of his ongoing advocacy work surrounding the Patient and Carer Race Equality Framework (PCREF).

Using creative media and spoken word, the poem visually and emotionally illustrates the everyday barriers faced by ethnic minority carers including institutional gatekeeping, dense medical jargon, exclusion from multi-disciplinary team meetings, and the sensation of being rendered invisible by healthcare professionals.

Matthew emphasized that creative media and arts-based advocacy are powerful mechanisms for staff training. By translating complex policy frameworks like PCREF into lived emotional narratives, creative media helps NHS staff understand the human impact of structural exclusion and drives empathetic, anti-racist practice across clinical teams.

Key Takeaways and Next Steps

The August meeting highlighted several critical action points for the forum and its partner organizations:

• Accountability over Intent: Moving beyond policies, anti-racism charters, and pledges to demand measurable, transparent outcomes in patient care and carer satisfaction.
• Dismantling Institutional Gatekeeping: Working with NHS trusts to ensure family carers are identified and involved early in treatment pathways, dismantling the misuse of confidentiality as a barrier.
• Embedding Co-Production: Supporting minoritised carers to join trust boards, steering groups, and PCREF advisory panels to ensure lived experience directly shapes local health delivery.

Looking Ahead to September:

The next national forum meeting will feature updates from Sheffield Health and Social Care NHS Foundation Trust, the Race Equality Foundation, Black Country Healthcare NHS Foundation Trust, and regional carer networks.