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National Ethnic mental health Carer Forum : July Update 2026

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

The July meeting welcomed unpaid carers, NHS organisations, universities, researchers and community groups from across England to discuss how mental health services can become more inclusive for carers from ethnic communities.

Matthew McKenzie opened the meeting by reflecting on over thirteen years of facilitating the forum and explained how its purpose has grown alongside national initiatives such as the Patient and Carer Race Equality Framework (PCREF) and the Triangle of Care. The forum continues to provide a national platform where carers can influence NHS services, hear about new research and share experiences with professionals and decision-makers.

Matthew introduced the day’s programme, which included research presentations, NHS England engagement, updates from mental health trusts and national organisations, and opportunities for carers to influence future policy

Dr Ida Doherty – King’s College London

Supporting Ethnic Carers in South West London

Dr Ida Doherty presented her doctoral research exploring how adult mental health services support ethnic minority families where a parent experiences mental illness.

She explained that despite national policy promoting a Think Family approach, implementation across England remains inconsistent. Many parents receiving mental health support are never asked about their children, meaning opportunities for preventative family support are often missed.

Discussion Highlights

This presentation generated one of the longest discussions of the meeting.

Carers highlighted:

Adult and children’s services continue to work separately.
Families often have to repeat their stories to multiple organisations.
Parents fear seeking support because of concerns about children being removed.
Structural racism continues to affect safeguarding and mental health services.
Disabled parents and carers experience multiple layers of discrimination.
Services often respond only during crisis rather than providing early intervention.

There was also an important discussion about safeguarding carers who participate in research. Participants stressed that research should include emotional support, culturally appropriate safeguarding and co-produced approaches to prevent re-traumatisation. Dr Doherty welcomed these suggestions and explained the safeguarding measures built into her study.

Dr Doherty encouraged forum members to promote the study across South West London to help ensure ethnic families are represented within the research.

Certainly. Here’s a more professional version that focuses on the discussion rather than identifying who asked each question.

Questions and Discussion

Q1. How can mental health services better implement the “Think Family” approach?

A question was raised about the continuing separation between children’s and adult mental health services, with concern that families are often required to navigate multiple systems that fail to communicate with one another. It was suggested that supporting one family member in isolation overlooks the wider impact of mental illness on the entire household.

Response

Dr Doherty agreed that this is a significant challenge and explained that her research is centred on improving whole-family support. She highlighted that current services often operate in silos, limiting opportunities for early intervention and joined-up care. The aim of her research is to identify practical ways of embedding the Think Family approach more effectively within adult mental health services.

Q2. How will the research address the inequalities experienced by ethnic minority families?

A discussion focused on the additional challenges faced by ethnic minority families, particularly where disability, poverty, language barriers and mental health intersect. Concerns were raised about institutional racism, unequal treatment and the fear some parents experience when engaging with services.

Response

Dr Doherty acknowledged that these intersecting inequalities can significantly affect families’ experiences. She recognised that services can often adopt a risk-focused rather than strengths-based approach and explained that her research seeks to identify earlier, more supportive interventions that better meet the needs of ethnic minority families.

Q3. How will carers participating in the research be protected from emotional harm?

The discussion explored the importance of safeguarding participants involved in research. It was suggested that sharing lived experiences can be emotionally challenging and that researchers should have appropriate support mechanisms in place before, during and after participation.

Response

Dr Doherty explained that safeguarding had been a key consideration throughout the development of the study. She described how support, supervision, training and ongoing review have been built into the project, alongside close collaboration with Experts by Experience from the earliest stages of the research.

Q4. Will participants receive ongoing emotional support after difficult discussions?

A further question explored whether structured debriefing and emotional support would be available for participants who may experience distress after discussing traumatic experiences.

Response

Dr Doherty confirmed that the study includes a comprehensive safeguarding framework, including debrief sessions and wellbeing support. She explained that the project had undergone rigorous NHS ethics approval and that participant welfare continues to be reviewed throughout the research process.

Q5. How is co-production embedded within the research?

The final discussion focused on ensuring that the research is genuinely co-produced with ethnic communities rather than being designed solely from a professional perspective. There was also support for developing safeguarding approaches jointly with carers.

Response

Dr Doherty explained that co-production is fundamental to the project. She has worked alongside Experts by Experience since the study was first developed and described the research as something being undertaken in partnership with people who have lived experience. She also welcomed suggestions for strengthening carer-led safeguarding approaches as the project progresses.

Dr Maeve (King’s College London)

Research Study: The Nearest Relative under the Mental Health Act

Dr Maeve introduced a new King’s College London research project examining experiences of the Nearest Relative provisions within the Mental Health Act. She explained that the study aims to understand how the current legislation works in practice and gather views ahead of the proposed reforms to mental health law. The researchers are interested in hearing directly from people who have lived experience of the system, recognising that the Nearest Relative can play a crucial role in supporting someone during assessment, detention and treatment.

The study is seeking participants from a range of backgrounds, particularly unpaid carers who have supported someone detained or assessed under the Mental Health Act, as well as individuals who have themselves experienced detention or assessment. The research team is especially keen to hear from Black and other ethnic minority communities, along with younger people, to ensure that a wide range of perspectives help inform future policy and practice. Interviews are conducted online via Microsoft Teams at a convenient time for participants, last approximately one hour, and participants receive a £30 shopping voucher as a thank-you for contributing their experiences. Dr Maeve encouraged anyone interested to contact the research team or share the opportunity with others who may wish to participate.

Ruby Neish – University College London

Cancer Care and Black Women

Research Study: Supporting Carers of Women with Endometrial (Womb) Cancer

Ruby Neish, a Master’s researcher from University College London working in collaboration with the Centre for Early Detection, introduced a research project exploring the experiences of family members, friends and unpaid carers supporting women diagnosed with endometrial (womb) cancer. She explained that while much research focuses on the experiences of patients themselves, comparatively little is known about the challenges faced by those providing informal care throughout diagnosis, treatment and recovery. The study aims to build a more complete picture by understanding how carers experience the cancer pathway, the support they receive and the barriers they encounter. Ruby emphasised that carers often play a vital role in navigating appointments, providing emotional support, helping with treatment decisions and managing the practical realities of living with cancer, yet their experiences are frequently overlooked in research.

Following the presentation, forum members shared a wealth of lived experience highlighting why this research is particularly important for Black and minority ethnic communities. The discussion explored how delayed diagnosis, language barriers, cultural expectations, disability, poor communication and wider health inequalities can all contribute to poorer experiences for both patients and their families. Members also reflected on the importance of improving awareness of cancer symptoms within communities, encouraging uptake of screening programmes and ensuring services are culturally responsive. Several contributors stressed that carers often become advocates, interpreters and navigators of the healthcare system, particularly where individuals experience multiple forms of disadvantage. The discussion reinforced the importance of ensuring that future cancer services recognise and support carers as an essential part of the patient’s journey.

Questions and Discussion

Q1. Why is it particularly important to understand the experiences of Black and minority ethnic women living with cancer?

Forum members discussed how people from Black and minority ethnic communities can face additional barriers throughout the cancer pathway. These included language differences, lower awareness of symptoms, cultural beliefs about illness, disability, mental health needs and difficulties accessing appropriate support. It was suggested that these factors can contribute to delayed diagnosis and poorer outcomes if services fail to respond to people’s individual circumstances.

Response

Ruby welcomed these observations and explained that hearing directly from carers is essential to understanding these inequalities. She noted that while patients’ experiences are being explored separately, the research hopes to capture the perspectives of carers to identify barriers that may otherwise remain invisible. Together, these findings will help build a more complete understanding of how cancer services can better support families from diverse communities.

Q2. How can cancer services improve early diagnosis within ethnic communities?

The discussion highlighted the importance of encouraging earlier engagement with screening programmes and improving awareness of cancer symptoms within local communities. Examples were shared of women whose diagnoses were delayed after repeated visits to healthcare services, alongside reflections on the positive impact that culturally appropriate information and trusted community support can have in encouraging people to attend screening appointments. Participants emphasised that services need to communicate in ways that are accessible and sensitive to different cultural backgrounds.

Response

The discussion reinforced that improving awareness, reducing communication barriers and working more closely with communities could contribute to earlier diagnosis and improved outcomes. The research aims to identify where carers believe improvements can be made across the diagnostic and treatment journey, helping to inform future service development.

Q3. What role do unpaid carers play throughout the cancer journey?

A final discussion focused on the often unseen contribution of unpaid carers. Members described how carers frequently provide emotional reassurance, accompany relatives to appointments, help explain medical information, advocate for concerns to be taken seriously and support individuals throughout treatment and recovery. It was recognised that carers often become the link between patients, families and healthcare professionals, particularly where communication barriers or additional health conditions exist.

Response

Ruby explained that this is precisely why the study is focusing on carers’ perspectives. Understanding their experiences will provide valuable evidence about the practical and emotional challenges carers face and identify ways that cancer services can better recognise and support them alongside the person receiving treatment.

NHS England – Allied Health Professions Strategy

Steve Tolan (Deputy Chief Allied Health Professions Officer) & Barry O’Donovan (Senior Programme Manager)

Steve Tolan and Barry O’Donovan from NHS England joined the forum to begin an important conversation about developing a new national Allied Health Professions (AHP) Strategy. Rather than presenting a completed strategy for consultation, they explained that NHS England wanted to engage with carers, patients and communities before the strategy was written, ensuring that lived experience would help shape its priorities from the outset.

Steve introduced the Allied Health Professions as the third largest clinical workforce in the NHS, comprising fourteen professions including occupational therapists, physiotherapists, speech and language therapists, dietitians, radiographers and several others. He explained that these professionals work across virtually every part of health and care, from mental health and primary care to acute hospitals, rehabilitation and community services, making their contribution central to improving patient outcomes.

Barry explained that NHS England was seeking honest feedback on what Allied Health Professionals currently do well and, more importantly, where improvements were needed over the next five years. The discussion centred around several key questions, including how AHPs could help people stay healthier for longer, improve prevention, reduce health inequalities, remove barriers to accessing care, and work more effectively across different care settings. Forum members were also encouraged to complete a wider national survey, but NHS England emphasised that hearing directly from unpaid carers during the meeting would provide invaluable insight into the everyday realities experienced by families supporting loved ones with mental illness and other long-term conditions.

What followed was one of the richest discussions of the meeting, with carers sharing personal experiences of navigating health services and offering practical recommendations for change. Contributors acknowledged the important work undertaken by Allied Health Professionals but stressed that future success would depend upon moving beyond clinical interventions alone. Members called for greater emphasis on prevention rather than crisis management, stronger action to address racism and health inequalities, more personalised and culturally responsive care, improved communication with families and better recognition of unpaid carers as essential partners within the healthcare system. NHS England representatives listened carefully throughout the discussion, responding positively to the feedback and confirming that the experiences shared during the forum would help inform the development of the national strategy.

Feedback from Forum Members

There was a lot more feedback, but I have only included 4 feedback to the strategy

Feedback 1 – Prevention must become the priority, not simply responding to crisis

One of the strongest messages from the discussion was that health services often intervene too late. Contributors explained that many families recognise early warning signs long before services become involved, yet support is frequently unavailable until a situation has escalated into crisis. Members argued that Allied Health Professionals are well placed to identify emerging concerns earlier, particularly for people living with long-term mental health conditions, autism, learning disabilities and chronic physical illnesses. Earlier intervention, they suggested, would reduce avoidable hospital admissions while improving outcomes for both patients and carers.

NHS England acknowledged this feedback, explaining that one of the key ambitions of the new strategy is to support the wider NHS objective of shifting from reactive treatment towards prevention. Representatives welcomed examples from carers illustrating where earlier support could make the greatest difference.

Feedback 2 – Tackling racism and health inequalities requires more than training

Forum members spoke candidly about experiences of racism, discrimination and unequal treatment within health services. While acknowledging that cultural awareness training is becoming more common, contributors argued that training alone is insufficient unless accompanied by accountability and meaningful changes in practice. Some described inaccurate clinical records, assumptions based on ethnicity and situations where concerns raised by families were not properly reflected in care planning. There was a strong call for services to improve communication, record keeping and trauma-informed practice, ensuring that staff understand the impact of racism on health outcomes rather than viewing cultural competence as a one-off training exercise.

NHS England representatives recognised that tackling health inequalities and promoting anti-racist practice were already identified as “non-negotiable” priorities within the developing strategy. They explained that this was precisely why engagement with forums such as this was so valuable, helping ensure that policy reflects the real experiences of people using NHS services.

Feedback 3 – Unpaid carers must be recognised as equal partners in care

A recurring theme throughout the discussion was the role of unpaid carers within healthcare systems. Members explained that carers are often the people coordinating appointments, supporting communication, monitoring deterioration, providing emotional support and helping professionals understand an individual’s needs. Despite this, carers frequently remain unidentified by services or receive little information and support themselves. Contributors argued that Allied Health Professionals should routinely identify carers, involve them in care planning where appropriate and recognise them as equal partners whose knowledge can significantly improve patient outcomes.

NHS England welcomed these comments and recognised that carers play a fundamental role in delivering effective, preventative care. The examples shared demonstrated how stronger partnerships with carers could improve continuity of care while helping services better understand the needs of individuals and families.

Feedback 4 – Share and learn from examples of excellent practice

The discussion concluded with examples of positive experiences that illustrated what good care can look like. One contributor described receiving outstanding support from an Occupational Therapist who not only arranged practical adaptations within the home but also followed up afterwards to ensure everything was working well. Members suggested that NHS England should identify and promote examples of excellent practice across the Allied Health Professions so that high standards become the norm rather than the exception. Ideas included involving patients and carers more directly in evaluating services and using lived experience to help identify what compassionate, person-centred care looks like in practice.

West London Health Trust – PCREF Update

Linda Thomas – Co-producing an Independent PCREF Advisory Group

Linda Thomas, Co-production and Partnerships Development Manager at West London NHS Trust, opened the Trust’s presentation by describing how they have developed an independent PCREF Advisory Group designed to challenge, support and hold the Trust to account as a “critical friend.” Rather than creating a traditional advisory panel, West London NHS Trust commissioned three established community organisations GOS&D (Ealing), SHEWISE (Hounslow) and Managing Our Mental (Hammersmith & Fulham) to help design the model and understand how communities genuinely want to engage with mental health services. The approach seeks to increase diversity of voices, identify barriers preventing community involvement and rebuild trust between local communities and the Trust. Linda explained that members of the advisory group now sit alongside Trust leaders as equal partners on the Steering Group, while work is progressing to secure long-term funding to sustain the network and strengthen relationships with community organisations. The initiative demonstrates how co-production can move beyond consultation towards genuine shared decision-making between the NHS and the communities it serves.

Debbie Best – PCREF Carer Lead: Racial Trauma Workshops

Debbie Best, PCREF Carer Lead at West London NHS Trust, presented the development of the Trust’s Racial Trauma Workshops, which were co-designed alongside Natalie Mark (PCREF Lived Experience Lead), Dr Anne Aiyegbusi and Chief Nurse Gillian Kelly. Debbie explained that the workshops were created in response to the persistent racial inequalities experienced within mental health services, including disproportionate detention under the Mental Health Act, restrictive interventions, mistrust of services and the re-traumatisation experienced by many people from ethnic communities.

Rather than delivering traditional equality training, the workshops create reflective spaces where staff openly discuss difficult issues including trust, power, emotional labour, racialised assumptions and barriers to culturally safe care. Debbie emphasised that racial trauma affects not only patients but also carers and NHS staff, and that creating psychologically safe spaces for honest conversations is an essential step towards improving relationships, reducing inequalities and embedding the aims of the Patient and Carer Race Equality Framework (PCREF) across mental health services.

Christine – Triangle of Care, Carer Awareness Training and PCREF

Christine, speaking as a carer representative involved in co-production, highlighted how West London NHS Trust has successfully embedded carers within staff training through the Triangle of Care programme. She explained that the Trust achieved Stage 2 Triangle of Care accreditation in March 2026 and has developed Carer Awareness Training that is designed and delivered alongside carers themselves.

The training introduces staff to both the Triangle of Care and the Patient and Carer Race Equality Framework, helping colleagues understand the importance of recognising carers as equal partners while strengthening communication and collaboration with families. Christine also announced that West London NHS Trust has been selected as one of only thirteen national pilot sites testing the integration of Triangle of Care and PCREF guidance over the next twelve months. Ten clinical teams will take part in reviewing and implementing the updated guidance, ensuring that national best practice is informed by both professional expertise and lived experience.

Debbie Best – Ethnicity Data Capture Project

Debbie concluded the presentation by introducing West London NHS Trust’s Ethnicity Data Capture Project, funded through a small grant from the NHS Race and Health Observatory. She explained that the project aims to improve understanding of why ethnicity information is not always accurately recorded and why some communities remain reluctant to share this information. Working alongside community organisations including SHEWISE, Our Voices and Managing Our Mental, the Trust has co-produced a range of resources including information leaflets, awareness films, social media campaigns, frequently asked questions and staff training materials. The campaign, titled “Seen, Heard, Counted,” aims to reassure communities that ethnicity data is collected to improve healthcare, tackle inequalities and ensure services better reflect the needs of local populations. Debbie explained that the next phase of the project will focus on wider public awareness and rolling out staff training across the Trust to improve confidence, transparency and trust around ethnicity data collection.

Bren McInerney

Race Equality Observatory

Bren McInerney provided an update on behalf of the NHS Race and Health Observatory, explaining that although he works closely with the organisation through its Stakeholder Engagement Group, he was speaking from his role supporting engagement rather than as an NHS employee. He began by outlining the Observatory’s purpose, which is to identify, understand and help reduce ethnic inequalities across health and social care through research, evidence and partnership working.

Bren highlighted that the Observatory has now produced a growing body of evidence to support NHS organisations in tackling inequalities and emphasised that this work must ultimately lead to practical improvements in services rather than simply producing reports. He also noted that the Observatory’s current funding arrangement is due for renewal in 2027, making it increasingly important to demonstrate the value and impact of its work across the NHS. The presentation encouraged attendees to remain engaged with the Observatory’s programmes and continue sharing lived experience to strengthen the evidence base for future policy and service improvement.

Bren also highlighted several recent initiatives designed to strengthen collaboration between the NHS and local communities. These included the publication of the Trauma-Informed Care and Racialised Communities Report, which explores how trauma-informed approaches can better respond to the experiences of people affected by racism and discrimination. He also described the Observatory’s Small Grants Programme, which has supported community-led projects across England, and introduced a new Community Participation and Co-production Resource developed in partnership with the Race Equality Foundation. This resource aims to help NHS organisations and Integrated Care Boards build stronger relationships with communities, improve meaningful involvement in decision-making and ensure that local knowledge helps shape healthcare services. Bren concluded by encouraging carers, voluntary organisations and community leaders to make use of these resources, share them widely and continue influencing the national conversation on race equality within health services.

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 200-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.

Today I Prayed: A PCREF Spoken Word Poem

By Matthew McKenzie – Chair of ethnic mental health carer forum.

For my latest spoken word video, “Today I Prayed,” I present a piece from my PCREF poetry collection that I am working on, Unpaid, Unseen and Yet Unbroken.

Grounded in the spirit of the Patient Carer Race Equality Framework (PCREF), this poem centers on the often hidden realities faced by unpaid Black mental health carers.

The poem explores spirituality not just as a source of private comfort and endurance, but as a solitary lifeline when formal systems fail and the heavy emotional weight of duty takes its toll.

I think watching this video is an invitation to witness the quiet strength of minority carers, plus raise awareness of systemic gaps in our care frameworks.

I hope the poem ensures that these vital carer voices are finally seen, heard, and respected.

Triangle of Care Community Meeting: July 2026 update

By Matthew McKenzie – Triangle of Care – Community group chair

Putting Carers at the Centre of Care

The latest Triangle of Care Community Group brought together carers, professionals and partner organisations from across England to share learning, celebrate progress and identify where further improvements are needed. The meeting highlighted the growing influence of the Triangle of Care across mental health and acute services, whilst reinforcing that there is still much work to do to ensure carers are consistently recognised, valued and supported.

One of the most powerful aspects of the meeting was hearing directly from carers about their experiences. Whilst many spoke positively about the progress that has been made over recent years, there was a shared view that carer involvement remains inconsistent across services. Carers described feeling more included than ever before, with greater awareness of the Triangle of Care principles and more opportunities to participate in steering groups, service developments and community discussions. However, concerns remain around automatic carer identification, information sharing and ensuring that carers are genuinely recognised as partners in care.

Several carers reflected on the importance of having their voices heard early in a patient’s care journey. Examples were shared of services introducing carer contribution templates that ensure family members are involved within 72 hours of admission, whilst others highlighted improvements to confidentiality processes that allow patients to determine what information can be shared with carers at different stages of their recovery. These practical changes demonstrate how relatively small adjustments can have a significant impact on relationships between carers, patients and professionals.

Progress Across the Triangle of Care Programme

Mary Patel, Triangle of Care Programme Lead at Carers Trust, provided an update on developments across the national programme. The Triangle of Care continues to grow, with a number of organisations progressing through the STAR accreditation process and demonstrating their commitment to embedding carer-inclusive practice across services.

Importantly, members were reminded that the STAR awards are not designed to rank organisations, but instead reflect the breadth of implementation across different service areas. STAR I focuses primarily on inpatient and crisis services, STAR II expands into community services, whilst STAR III recognises organisations delivering integrated services across multiple clinical areas.

Several trusts have recently achieved STAR awards, whilst others are progressing through the assessment process over the coming months. The programme’s peer review approach continues to ensure that carers remain central to the assessment process, with carers actively involved in reviewing evidence, identifying good practice and making recommendations for future development.

The Triangle of Care Member Hub continues to provide valuable opportunities for peer learning, resource sharing and collaborative working. Upcoming webinars will include sessions exploring Open Dialogue approaches developed by Devon Partnership NHS Trust, providing members with further opportunities to learn about therapeutic models that place families and carers at the heart of care planning.

Advancing Equality Through the Patient and Carer Race Equality Framework

A significant development announced during the meeting was the launch of Phase Two of the Triangle of Care and Patient and Carer Race Equality Framework (PCREF) project.

PCREF represents the first mandatory anti-racism framework within mental health services in England. Recognising that carers from racially marginalised communities often experience poorer outcomes and face additional barriers when accessing support, the Triangle of Care programme has been working collaboratively with carers and mental health providers to strengthen the way services assess and respond to carers’ needs.

The revised self-assessment framework encourages services to move beyond assumptions and adopt a more professionally curious approach to understanding carers’ individual experiences. Rather than viewing carers as a homogenous group, the framework recognises that caring experiences are shaped by culture, identity, language, personal circumstances and wider health inequalities.

Pilot sites from across England are now testing the revised guidance, with learning being shared nationally throughout the project. Importantly, organisations do not need to be participating in the pilot to begin implementing the principles and learning that emerge from this work.

Alongside PCREF, Carers Trust continues to contribute to national policy developments, including the Modern Service Framework for Severe Mental Illness and the forthcoming Mental Health Strategy for England. Throughout these discussions, there has been a consistent message that carers must be recognised as partners in care and have access to appropriate support in their own right.

Confidentiality, Information Sharing and Carer Inclusion

Confidentiality remained one of the most prominent themes throughout the meeting. Whilst participants acknowledged the importance of protecting patients’ rights and preferences, carers highlighted that confidentiality can sometimes become a barrier to meaningful engagement.

Several contributors reflected that confidentiality should never prevent professionals from listening to carers’ concerns or receiving valuable information that may support a patient’s care. Others spoke about the importance of revisiting conversations around consent over time, recognising that patients’ preferences may change as their circumstances and wellbeing improve.

Practical examples of good practice included breaking confidentiality discussions down into specific areas, allowing patients to decide what information can be shared about medication, activities, wellbeing and treatment plans, rather than relying on simple ‘yes or no’ decisions. There was also discussion around the importance of staff training to improve confidence when navigating complex conversations around confidentiality and information sharing.

Participants agreed that carers should never be expected to provide significant levels of support without receiving the information necessary to do so safely and effectively. Achieving the right balance between confidentiality and partnership working remains an important priority for the Triangle of Care community.

Triangle of Care Principles Within Acute Services

The meeting concluded with an inspiring presentation from Wendy Doyle, Head of Patient Experience at St George’s University Hospitals NHS Foundation Trust and Epsom and St Helier Hospitals, exploring how Triangle of Care principles can be successfully implemented within acute hospital settings.

Whilst the Triangle of Care originated within mental health services, Wendy demonstrated that its principles are equally applicable across acute care environments. Her organisation supports approximately 19,000 members of staff across multiple hospital sites and has developed a comprehensive approach to identifying, recording and supporting unpaid carers.

Staff are encouraged to identify carers at the earliest possible opportunity, with this information recorded within patient records to ensure continuity throughout the patient’s hospital journey. Comprehensive carer awareness training is delivered through virtual sessions, ward-based education and e-learning resources, helping staff understand both the practical and emotional importance of recognising carers.

Importantly, identifying carers is only the beginning of the process. Every carer recorded within the hospital system receives a follow-up wellbeing check from the Patient Experience Team to discuss their own support needs, identify any challenges and facilitate referrals to local carers’ organisations where appropriate.

Partnership working sits at the heart of this approach, with close collaboration between acute services and local carers’ centres ensuring carers can access a broad range of practical and emotional support. Adult and Young Carers’ Charters have also been co-produced with carers themselves, helping to shape organisational commitments around kindness, inclusion and meaningful engagement.

Perhaps most importantly, Wendy highlighted that supporting carers improves outcomes for everyone. Better communication strengthens discharge planning, reduces avoidable hospital admissions and readmissions, improves patient safety and helps prevent carer burnout. Acute hospital stays can provide valuable opportunities to identify carers who may previously have remained invisible and connect them with longer-term support.

Looking Ahead

The discussions throughout the meeting demonstrated both the progress that has been made and the challenges that remain. There is increasing recognition that carers are essential partners in delivering high-quality care across both mental health and acute services. However, meaningful involvement cannot rely upon individual goodwill alone; it requires consistent systems, robust policies and a genuine commitment to partnership working.

Looking ahead, the Triangle of Care programme will continue to expand opportunities for peer learning, influence national policy developments and support organisations to embed carer-inclusive practices across services. The ongoing work around PCREF and wider mental health policy developments provide important opportunities to ensure that carers’ voices remain central to future service transformation.

Above all, the meeting reinforced a simple but powerful message: carers must not be viewed as an afterthought or an optional addition to care planning. They are experts through experience, invaluable partners in care and individuals with support needs of their own. When carers are identified early, listened to meaningfully and supported appropriately, outcomes improve not only for carers themselves, but for patients, families and services alike.

The Triangle of Care Community Group continues to provide an important space where carers and professionals can learn from one another, challenge existing practices and work collectively towards more compassionate, inclusive and effective care.

Behind Closed Doors: Facing Community Stigma as an Unpaid Mental Health Carer

By Matthew McKenzie – Ethnic Mental Health Carer and Poet

invisible challenge for ethnic minority mental health carers. “Poem 15: The friends I have lost,” a powerful spoken-word piece from Matthew McKenzie’s poetry book that is in development Unpaid, Unseen and Yet Unbroken, sheds a crucial light on this hidden struggle.

It captures the profound loneliness of an unpaid carer who watches friendships fade away as community members close their ears and elders demand privacy over open support. By highlighting the intersection of familial duty, mental illness, and societal rejection, this moving presentation exposes the heavy emotional toll born by those who care for loved ones behind closed doors.

This poem serves as a stark reminder of why initiatives like the Patient Carer Race Equality Framework (PCREF) are so urgently needed in healthcare and community support networks today.

Watch the full poetry video to immerse yourself in this essential conversation, and help us raise awareness for the vital support and recognition that ethnic minority mental health carers truly deserve.

By dismantling the barriers of stigma and addressing the specific inequalities faced by ethnic minority families, PCREF aims to ensure that no carer is left to navigate this challenging journey in absolute isolation.

National Ethnic mental health Carer Forum : June Update 2026

By Matthew McKenzie – Carer & Chair of the National Ethnic MH carer Forum

The June 2026 National Ethnic Mental Health Carer Forum brought together carers, NHS Trusts, researchers, voluntary organisations and mental health professionals from across England to discuss one shared ambition improving mental health services through genuine co-production with ethnic minority carers.

Matthew reminded delegates that carers develop expertise through lived experience. Supporting a family member with severe mental illness means navigating NHS services, social care, benefits systems and advocacy. These experiences provide knowledge that cannot be learned through textbooks alone.

Opening Presentation

Matthew McKenzie

The Importance of Co-production

Forum Chair Matthew McKenzie opened the meeting by welcoming carers and professionals from across England and reflecting on more than a decade of leading the National Ethnic Mental Health Carer Forum.

He explained how the forum has evolved alongside the NHS Patient and Carer Race Equality Framework (PCREF), providing an increasingly important national platform for ethnic minority carers to influence mental health services.

A recurring theme throughout the presentation was the internationally recognised principle:

“Nothing About Us Without Us.”

He explained that this principle has guided disability rights and patient involvement movements for many years and remains just as relevant today for carers supporting loved ones with serious mental illness. Family carers often spend years navigating mental health services, social care systems and community support, developing valuable knowledge through lived experience that professionals alone cannot acquire. This expertise is especially important for carers from minority ethnic communities who may also encounter cultural misunderstandings, language barriers, discrimination or unequal access to services. Matthew argued that services cannot fully understand these challenges without involving the people who experience them every day. He encouraged carers to recognise that their experiences are not simply personal stories but a form of expertise that should be valued equally alongside professional knowledge when designing, reviewing and improving services.

The presentation concluded with a powerful call for organisations to move beyond consultation towards genuine partnership working. Matthew explained that when co-production is absent, services risk misunderstanding community needs, developing policies that fail to reflect lived experience and missing opportunities to reduce long-standing inequalities. Conversely, meaningful engagement enables carers to become active partners in service improvement, helping organisations build trust with communities, improve cultural responsiveness and design services that are accessible to everyone.

He also highlighted complementary approaches, including the Triangle of Care, Open Dialogue, cultural competence and shared decision-making, all of which reinforce the importance of collaboration between professionals, service users and carers. Matthew ended by encouraging every organisation represented at the forum to ensure that diverse voices are heard throughout the decision-making process, not simply those that are easiest to reach. His closing message resonated throughout the rest of the meeting: meaningful change begins by listening, respecting lived experience and ensuring that carers have a genuine seat at the table whenever mental health services are being designed or improved.

Q&A Highlights

Q: Why is co-production particularly important for ethnic minority carers?

Because carers from minority communities often experience additional barriers including discrimination, cultural misunderstandings and language challenges. Their lived experience helps services recognise issues that routine data alone cannot identify.

Q: What happens when services fail to co-produce?

Participants suggested services become “them and us” organisations where carers feel excluded, policies fail to meet community needs and trust declines.

Bradford District Care NHS Foundation Trust

Bronte Dines-Allen

Bronte Dines-Allen, Reducing Health Inequalities Lead at Bradford District Care NHS Foundation Trust, provided an inspiring overview of the Trust’s journey in implementing the Patient and Carer Race Equality Framework (PCREF). Introducing herself not only as a senior NHS leader but also as someone with lived experience as a family carer supporting her mother with mental ill health, Bronte spoke passionately about the importance of understanding services from both professional and personal perspectives.

She described Bradford as one of the most culturally diverse areas in England, with more than 150 languages spoken across the district and a population representing a wide range of ethnic communities. This rich diversity presents both opportunities and responsibilities for healthcare providers, requiring services to continually adapt, listen and ensure that care is culturally responsive and accessible to everyone. Bronte explained that Bradford’s approach to PCREF has been built around openness and transparency, with the Trust publishing annual progress reports and equality data to demonstrate both achievements and areas where further improvement is needed.

A major focus of Bronte’s presentation was the Trust’s recent “Amplifying Voices” event, which brought together NHS staff, voluntary and community organisations, chaplaincy services, neighbouring NHS Trusts and people with lived experience to discuss health inequalities and mental health care. Rather than concentrating solely on statistics, the event was designed to explore the stories behind the data, recognising that every figure represents a real person, family or community whose experiences deserve to be heard.

Participants shared personal accounts of navigating mental health services, building trust with professionals, overcoming barriers related to culture and language, and the importance of feeling genuinely listened to. Bronte stressed that collecting feedback is only meaningful if organisations demonstrate how that feedback influences future decision-making. One of the most encouraging outcomes of the event was the commitment from senior leaders that the experiences shared would directly inform the Trust’s refreshed organisational strategy, ensuring that health equity and reducing inequalities remain central to future service development.

Looking ahead, Bronte outlined several priorities that will continue to strengthen Bradford’s PCREF programme. These include expanding cultural competency training for staff, increasing awareness of PCREF throughout the organisation, developing educational resources that encourage conversations about race equality, and creating further opportunities for carers to contribute to service improvement.

She acknowledged that the Trust is still early in parts of its journey, particularly in strengthening engagement with carers and improving mechanisms for gathering feedback, but emphasised that genuine progress comes through honesty, collaboration and a willingness to learn from others. During the discussion that followed, delegates praised Bradford’s transparent approach and shared examples of similar work taking place across other NHS Trusts, reinforcing one of the key messages of the forum that improving mental health services is a shared national endeavour. Bronte concluded by reiterating that sustainable change depends upon building trusting relationships with communities, valuing lived experience as expertise and ensuring that carers remain active partners in shaping the future of mental health care.

Q&A Highlights

Q: What specific work is being undertaken with older adults?

Bronte acknowledged that Bradford is still developing this area and welcomed suggestions from carers and other Trusts, emphasising the importance of learning nationally.

Q: How is co-production influencing your work?

The event itself was co-designed with voluntary sector partners and accountability groups, ensuring community voices shaped both the programme and future priorities.

Q: How do you collect meaningful feedback?

Bradford continues improving its feedback systems following technical challenges and is exploring better ways of gathering and acting on carers’ experiences.

Research Presentation

Dr Meghana Kamble

Families of Children with Disabilities: Perspectives from South Asia

Dr M. Kamble from the University of East Anglia presented an insightful overview of an international research project exploring the experiences of South Asian families caring for children and adults with intellectual and developmental disabilities.

The study spans the United Kingdom, India, Sri Lanka and the United States, bringing together the voices of parents, siblings, carers, people with disabilities and professionals to better understand the challenges faced by families across different cultural settings. Dr Kamble explained that despite increasing awareness of health inequalities, the experiences of many ethnic minority families remain underrepresented in both research and service development. The project seeks to address this gap by examining not only access to services but also how cultural beliefs, family dynamics and lived experience influence the support that families receive. Underpinning the research is the principle of family-centred care, recognising that supporting one individual also means understanding and supporting the wider family network that cares for them.

Drawing on early findings from interviews, focus groups and surveys, Dr Kamble highlighted several recurring themes that resonated strongly with delegates at the forum. Families consistently reported difficulties accessing culturally appropriate services, navigating complex health and social care systems, and finding professionals who understood the realities of their lived experience. Stigma, social isolation and language barriers were frequently identified as obstacles that prevented families from seeking support at an early stage.

One particularly interesting finding challenged common assumptions about South Asian communities. While it is often believed that extended family networks naturally provide substantial support, many participants described relying far more heavily on peer support groups, community organisations and voluntary sector services than on relatives. Dr Kamble also observed that outside Europe many people do not identify themselves as “carers” in the formal sense; instead, they simply see themselves as sons, daughters, brothers or sisters fulfilling their family responsibilities. This distinction has important implications for how services identify and engage people who may be eligible for support but never recognise themselves under the label of “carer.”

The discussion following the presentation explored how research findings can influence future policy and practice. Delegates highlighted the need for clearer information about carers’ rights, improved communication with communities and greater transparency from statutory services about the support that is available. Several participants emphasised that trust can only be built when organisations consistently involve communities in decision-making and demonstrate that lived experience genuinely shapes service improvements. Dr Kamble agreed that while systems and policies are important, individual professionals often make the greatest difference by taking the time to guide families through complex services and helping them understand their rights. Looking ahead, the research team plans to share its findings through publications, webinars, community engagement events and partnerships with organisations across the UK and internationally. The presentation served as a powerful reminder that reducing inequalities requires not only better research but also culturally responsive services that recognise and value the diverse experiences of families from every community.

Q&A Highlights

Q: How will the research findings be shared?

The project plans to publish papers, webinars, newsletters and community engagement events, with researchers keen to work alongside carers in disseminating findings.

Q: How can services better reach ethnic minority carers?

Participants emphasised:

clearer information about rights
better community engagement
trusted local organisations
simpler access to support
transparent communication.

Q: Should organisations rethink the word “carer”?

Yes.

Several delegates suggested that many people never identify with the label “carer,” meaning they may never seek available support. Researchers agreed this requires further exploration.

Nottinghamshire Healthcare NHS Foundation Trust

Ashley Bertie

Accelerating PCREF Implementation

Ashley Bertie, Associate Director for Participation, Co-production and Patient Care Experience at Nottinghamshire Healthcare NHS Foundation Trust, provided an informative update on the Trust’s progress in implementing the Patient and Carer Race Equality Framework (PCREF). Ashley explained that although the Trust recognises there is still much work to do, PCREF has become a strategic priority across the organisation and is helping to drive meaningful cultural change.

Since taking up his role, one of his key objectives has been to accelerate implementation by embedding race equality, co-production and lived experience into the Trust’s everyday work. He described how the organisation has established a comprehensive governance structure, including a PCREF Steering Group chaired by the Chief Nurse, supported by specialist groups focusing on health inequalities, workforce development and lived experience. Importantly, carers, patients, Equality, Diversity and Inclusion (EDI) ambassadors and voluntary sector representatives are all involved in shaping the Trust’s work, demonstrating a commitment to partnership rather than top-down decision making.

Ashley emphasised that improving mental health services cannot be achieved by the NHS working in isolation. A significant part of Nottinghamshire Healthcare’s strategy involves developing strong partnerships with voluntary and community organisations, local authorities, Integrated Care Boards and other NHS Trusts.

He explained that many people from ethnic minority communities have longstanding relationships with trusted community organisations but may be reluctant to engage directly with statutory services due to previous negative experiences or cultural barriers. As a result, the Trust is increasingly taking its engagement activities into local communities, holding events in community centres, places of worship and neighbourhood venues where people already feel comfortable and supported. Alongside this community-based approach, the Trust is investing in cultural capability training for staff, improving transparency through publicly available equality dashboards and developing a new Lived Experience Advisory Group to ensure that carers and service users play a central role in monitoring progress and influencing future service improvements.

Looking ahead, Ashley outlined an ambitious programme of work designed to embed PCREF throughout the organisation over the coming years. Funding secured through NHS England will support a wide range of initiatives, including cultural awareness workshops, staff development programmes, community capacity-building projects and expanded opportunities for people with lived experience to influence recruitment, service design and quality improvement.

One of the Trust’s key ambitions is to ensure that at least 80 per cent of its workforce receives training on the principles of PCREF, helping staff to better understand health inequalities and deliver more culturally responsive care. Throughout his presentation, Ashley reinforced the importance of meeting communities where they are, listening carefully to lived experience and building relationships based on trust rather than assumptions. His presentation reflected the wider theme of the forum: that lasting improvements in mental health services depend upon genuine collaboration between professionals, carers, service users and the communities they serve.

Q&A Highlights

Q: Why are community partnerships so important?

Ashley explained that local organisations often have trusted relationships with communities that NHS services may not yet possess.

Q: How will Nottinghamshire involve carers?

Through a new Lived Experience Advisory Group, strengthened co-production arrangements and wider involvement in service design, recruitment and evaluation.

King’s College London

Ida Doherty

Supporting Ethnic Carers in South West London

Although this presentation formed part of the meeting agenda, discussion focused on ongoing work supporting ethnic carers across South West London through research and partnership working. The emphasis was on better understanding carers’ experiences and ensuring that future services are informed directly by those experiences.

More on her talk will be for the next forum due to time.

Looking Ahead

The National Ethnic Mental Health Carer Forum continues to provide a valuable national platform where carers, researchers, NHS Trusts and community organisations can learn from one another.

The discussions demonstrated that progress is being made through PCREF, research and community partnerships, but also recognised that significant challenges remain.

Moving forward, success will depend on maintaining the principles that underpinned every presentation:

listening before acting
valuing lived experience
strengthening trust
improving cultural responsiveness
ensuring carers remain genuine partners in shaping mental health services.

The forum closed with networking and an invitation for organisations across England to continue sharing good practice, supporting one another and working collectively to reduce inequalities in mental health care.

Date of Next forum – 31st of July 10:30 am

Carers Week 2026 Round-Up

By Matthew McKenzie – Carer, Campaigner, Author and Speaker

5 June 2026 – Supporting Kent County Council’s Carer Awareness Campaign

Although not officially part of Carers Week, my activities with Kent County Council formed an important part of my ongoing commitment to raising awareness of unpaid carers. I supported the county’s long-term carer awareness campaign by taking part in filming designed to help train council staff to better recognise and support carers.

I also discussed future opportunities to speak at Kent County Council carer groups and continued promoting my own support groups across the county. It was encouraging to see local government investing in carer awareness and recognising the importance of ensuring carers are identified, valued and supported within their communities.

9 June 2026 – Developed Video promotion for Carers Week 2026

I did my bit to raise awareness of Carers Week 2026 via a video I developed, which you can see below.

8 June 2026 – Carers Week Stall at St George’s University Hospital

Carers Week officially began with a rewarding day at St George’s University Hospital, where I hosted a Carers UK information stall. The event provided an opportunity to engage directly with unpaid carers, patients, hospital staff and visitors, sharing information about the support available to carers both locally and nationally.

I was particularly pleased to see the hospital’s dedicated carers information board, which demonstrated a clear commitment to recognising and supporting unpaid carers. Throughout the day, I spoke with many people who were caring for family members and helped raise awareness of carers’ rights, available services and the importance of seeking support. It was a positive start to Carers Week and highlighted the vital role healthcare settings can play in identifying and supporting carers.

10 June 2026 – Ealing Carers Week Celebration at Perceval House

On 10 June, I attended the Carers Week Celebration 2026 at Perceval House in Ealing, organised by Ealing Carers Partnership, Ealing Carers Hub and Ealing Council. As someone who supports both of my elderly parents, I understand first-hand the rewards and challenges of caring. During the event, I had the privilege of hosting a Carers UK information stall while also attending as a carer, poet and author.

The day brought together carers, charities, community organisations, health professionals and council representatives in a welcoming and supportive environment.

Carers had access to information, advice and wellbeing activities, including complimentary refreshments, free manicures provided by Uxbridge College students, artwork exhibitions and opportunities to connect with others who understand the caring journey. The event served as a powerful reminder that carers matter, their voices are important and they should never feel alone.

You can find out more about the event below from Ealing Local Community news

Celebrating carers across the borough

10 June 2026 – Carers Week Parliamentary Drop-In Event, Westminster

Later that day, I attended the Carers Week Parliamentary Drop-In Event at Portcullis House, Westminster. The event brought together unpaid carers, carers’ organisations, MPs and Peers to discuss the realities of caring and the support carers need.

Designed as a speed-networking event, it offered an important platform for carers to share their experiences directly with policymakers and raise awareness of both the immense contribution carers make and the challenges they face. It was encouraging to see parliamentarians engaging with carers and supporter organisations, demonstrating a growing recognition of the need for stronger policies and greater support for unpaid carers across the country.

11 June 2026 – East Sussex Carers Voices Event, East Dean Village Hall

As part of Carers Week, I travelled to East Dean in East Sussex to speak at the East Sussex Carers Voices – Celebrating Carers Week Event, organised by Care for the Carers. The event brought together unpaid carers, NHS representatives, local authority leaders, health professionals, carers’ organisations and community groups to discuss how support for carers can be improved.

Hosted by Dr Neil Churchill, Chair of Care for the Carers along with Jennifer Twist CEO of Care For The Carers, the day focused on listening to carers’ experiences and ensuring their voices were heard by decision-makers.

I was honoured to contribute to these discussions and to share insights from my own caring journey. The event demonstrated the value of bringing carers and professionals together to shape services and create positive change for unpaid carers across East Sussex.

12 June 2026 – Speaking at the Cygnet National Carers Event

On 12 June, I had the privilege of speaking at the Cygnet National Carers Event in London as Cygnet’s PCREF Carer Lead, Carer Network Ambassador and carer author. The event brought together carers, healthcare professionals and sector leaders to celebrate carers and discuss the support they need. I shared my experiences as a lifelong carer and highlighted the importance of recognising carers as equal partners in care.

It was inspiring to hear from a diverse range of speakers, including experts by experience, researchers, advocates and service leaders, all united by a shared commitment to improving outcomes for carers. The event reinforced the importance of lived experience in shaping services and ensuring carers’ voices remain central to policy and practice.

13 June 2026 – Carers Community and Support Day at Wells Park Practice

I concluded Carers Week 2026 by hosting a carers information stall alongside Wendy (who is also a devoted carer campaigner at our Lewisham group) at Wells Park Practice during their Carers Community and Support Day.

The event celebrated carers within the local community and provided an opportunity for unpaid carers to access information, advice and support in a relaxed and welcoming environment.

Throughout the afternoon, I spoke with carers about the challenges they face and the services available to help them. The event also highlighted the importance of building a carer-friendly community by recognising carers, understanding the realities of caring and empowering carers to live fulfilling lives. It was a fitting way to end a busy and rewarding week dedicated to championing carers and raising awareness of their invaluable contribution to society.

Reflection

Carers Week 2026 was an incredibly busy and meaningful week, providing opportunities to raise awareness, influence decision-makers, support carers directly and celebrate the extraordinary contribution that unpaid carers make every day.

From hospitals and GP surgeries to Parliament, local authorities and national conferences, the message remained the same: carers are essential, carers deserve recognition and carers must be supported. I am proud to have contributed to so many events throughout the week and remain committed to ensuring that carers’ voices continue to be heard long after Carers Week has ended.

CarersWeek2026, #CarersWeek, #UnpaidCarers, #CarerAwareness, #SupportCarers, #CarersMatter, #NHS, #MentalHealth, #HealthAndSocialCare

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.

The conference was built around the principle that advancing race equity requires both organisational commitment and meaningful partnership with people who use services, carers and communities. Throughout the day, speakers challenged delegates to move beyond discussion and towards action, recognising that the inequalities experienced by racialised communities within mental health services remain one of the most significant challenges facing the NHS.

South West London and St George’s Mental Health NHS Trust

The first trust presentation was delivered by Amdad Ibrahim, Associate Director of Health Inequalities, and Dr Mona Dhesi, Consultant Forensic Psychologist and Associate Medical Director at South West London and St George’s Mental Health NHS Trust. Their presentation provided one of the clearest examples of how PCREF can be fully integrated into organisational strategy. Beginning with an explicit acknowledgement that racism exists within healthcare organisations and wider society, they demonstrated how their trust had used this recognition as the foundation for meaningful action.

The speakers outlined a comprehensive anti-racism programme linking governance, workforce development, community engagement and service transformation. Race equity has been embedded into business planning, leadership accountability and quality improvement processes, supported by cultural capability programmes, anti-racism steering groups and health equity assessments.

Their presentation demonstrated how PCREF can become part of the organisational DNA of a trust rather than a standalone initiative and provided a practical blueprint for others seeking sustainable implementation.

1. Commitment and Foundations

The Trust began by establishing a clear organisational commitment to becoming an anti-racist organisation. This commitment is supported through a range of strategic frameworks and governance structures, including the Trust’s Anti-Racism Framework, Board Equality, Diversity and Inclusion objectives, and the implementation of the Patient and Carer Race Equality Framework (PCREF).

Speakers emphasised that meaningful progress begins with leadership acknowledging that racism exists within healthcare systems and taking responsibility for addressing it. This commitment has been reinforced at Board level and incorporated into wider organisational priorities to ensure race equity remains visible and accountable.

2. Capability and Awareness

Recognising that sustainable change requires learning and reflection, the Trust has invested heavily in developing staff awareness and cultural capability. This includes initiatives such as:

White Allies Programme
Anti-Racism Hub and Reflective Spaces
Equality, Diversity and Inclusion Champions
Cultural Capability Training

These programmes create opportunities for staff to develop a deeper understanding of race, culture, privilege and inequality while providing safe spaces for reflection and discussion. The aim is to move beyond awareness and support staff to actively challenge inequity within their daily practice.

3. Embedding Anti-Racism into Practice

SWLSTG has focused on ensuring anti-racist values are embedded within decision-making processes and clinical practice rather than existing solely within training programmes.

Key areas of work include:

Embedding anti-racist values into organisational behaviours
Increasing diversity within leadership and decision-making structures
Delivering targeted race equity interventions
Using Health Equity Impact Assessments to inform service development

The Trust highlighted how race equity considerations are now being incorporated into service redesign programmes, policy development and clinical pathways, ensuring that decisions are assessed for their potential impact on different communities.

East London NHS Foundation Trust (ELFT)

Advancing Equity in All That We Do: ELFT Strategy 2026–2031

Presented by Carrie Sissons, Deputy Director of Integrated Care, East London NHS Foundation Trust shared how race equity and inclusion have been embedded at the heart of the Trust’s new 2026–2031 Strategy. Rather than developing a strategy behind closed doors, ELFT undertook an extensive engagement programme designed to ensure that the voices of service users, carers, staff and communities directly influenced the Trust’s future direction.

Carrie explained that the strategy was developed during a period of significant challenge for health and care services, but also a period of opportunity. The Trust recognised that if it was to improve outcomes for the diverse communities it serves across East London, Bedfordshire and Luton, equity could not be treated as a separate programme of work. Instead, it had to become a core principle underpinning every decision, every service and every improvement initiative undertaken by the organisation.

Building the Strategy Through the “Big Conversation”

A major feature of the strategy development process was the Trust’s extensive engagement exercise known as the “Big Conversation.” This programme was designed to ensure that the final strategy reflected the experiences, priorities and aspirations of the people who use and deliver services.

What People Told ELFT

One of the strongest messages emerging from the Big Conversation was the importance of equity. Participants consistently identified inequalities in access, experience and outcomes as issues that required sustained attention and action.

The engagement process highlighted several key themes:

Equity as a priority for action.
Equity for specific communities and groups.
Equity as a current and future risk.
Equity through co-production and lived experience.
Equity through population health and prevention.
Equity for staff as well as service users.
Equity through digital inclusion.
Equity as an essential part of value, not separate from it.

Carrie explained that these findings reinforced the need for equity to be visible throughout the Trust’s strategic objectives and operational plans. Participants wanted to see measurable action rather than broad commitments, with a focus on understanding and addressing disparities experienced by different communities.

The ELFT Strategy 2026–2031

The new strategy builds upon ELFT’s existing values and commitment to high-quality care. Serving approximately 1.8 million people across East London, Bedfordshire and Luton, the Trust recognised that reducing inequalities must remain central to its future ambitions.

The strategy identifies four broad priorities for the next five years:

Improve the quality and experience of care.
Make ELFT a great place to work.
Advance equity in all that we do.
Work with partners and communities to improve lives.

Of these priorities, the commitment to advancing equity was particularly relevant to the themes of the PCREF conference.

Priority Three: Advance Equity in All We Do

Carrie described this priority as a commitment to ensuring that equity becomes embedded within everyday practice rather than being treated as a specialist programme.

By 2031, ELFT aims to ensure that:

Teams routinely analyse access, experience and outcomes by population group.
Services take action when disparities are identified.
Progress continues against PCREF commitments.
The Trust’s Anti-Racism Plan and Charter are actively implemented.
Equity and inclusion are strengthened across the workforce.
Inequalities experienced by racialised communities are reduced.

The strategy recognises that data alone is not enough. Equity must be considered throughout service design, quality improvement, workforce development and organisational decision-making.

West London NHS Trust

Presented by Debbie Best (PCREF Lead), Natalie Mark (Living Experience PCREF Lead) and Dr Anne Aiyegbusi, West London NHS Trust delivered one of the most powerful and thought-provoking presentations of the conference. Their session focused on racial trauma, exploring how racism affects patients, carers and staff, and how organisations can create safe spaces to acknowledge, understand and respond to those experiences.

The presentation was rooted in the recognition that racial inequalities remain deeply embedded within mental health services. The team explained that their work developed in response to persistent concerns around disproportionate referrals, detention rates and restrictive interventions experienced by racialised communities. They also highlighted how mistrust of services and experiences of re-traumatisation continue to affect people’s willingness to engage with mental health support. Importantly, they stressed that racial trauma is not only experienced by service users but also by carers and staff, many of whom continue to navigate systems that can reproduce inequity.

Why This Work Matters

West London NHS Trust identified several key issues that informed the development of their racial trauma programme:

Disproportionate rates of referrals and detention among racialised communities.
Higher levels of restrictive interventions within mental health pathways.
Mistrust of services due to previous negative experiences.
The risk of re-traumatisation through interactions with healthcare systems.
The impact of racism on patients, carers and staff alike.

A particularly striking message from the presentation was that many racialised staff attending the workshops were not learning about racial trauma as a new concept. Instead, they were reflecting on experiences that formed part of their everyday reality. This observation reinforced the importance of creating environments where these experiences can be discussed openly and safely.

Co-produced Learning Spaces

The racial trauma workshops were developed through a co-production approach involving Debbie Best, Natalie Mark and Dr Anne Aiyegbusi, a forensic psychotherapist, group analyst and registered nurse who has published extensively on racial trauma. Together they designed reflective learning spaces where participants could explore difficult but essential conversations around race, identity and mental health.

The workshops encouraged participants to discuss:

Trust, power and emotional labour.
Racialised assumptions within healthcare.
Barriers to culturally safe care.
Experiences of racism in professional and personal settings.
Organisational responsibilities in responding to racial trauma.

Feedback from participants demonstrated the impact of these conversations. Attendees reported that hearing people’s lived experiences brought the issues to life in ways that data alone could not achieve. Many described the workshops as challenging but necessary, with one participant stating that conversations about racial trauma are essential even when they are uncomfortable.

Wider PCREF Implementation at West London NHS Trust

Alongside the racial trauma work, the presentation highlighted wider progress being made through PCREF implementation across the Trust.

Key achievements included:

Establishing PCREF leadership, steering groups and governance structures.
Developing dedicated lived experience leadership roles.
Increasing the number of PCREF leads and lived experience members.
Delivering Trust-wide PCREF awareness events.
Running community listening events and engagement activities.
Developing a Cultural Competency Framework and tailored action plans.
Creating co-produced communications led by patients and carers.
Improving ethnicity data collection and reporting systems.
Working with specialist racial trauma consultants to strengthen organisational understanding.

Particularly noteworthy was the emphasis on co-production. Patients and carers were not simply consulted but actively involved in shaping communications, governance structures, learning programmes and strategic priorities. This demonstrated a commitment to ensuring that those most affected by inequalities have a meaningful voice in driving change.

Key Learning from West London NHS Trust

The West London presentation demonstrated that addressing racial inequalities requires more than policy changes alone. It requires organisations to create spaces where difficult conversations can happen safely, where lived experience is valued as expertise and where learning leads directly to action.

Their work showed that racial trauma is not solely an individual experience but an organisational challenge that requires leadership, accountability and sustained commitment. By combining co-production, cultural competency, workforce development and organisational reflection, West London NHS Trust is helping to create the conditions for more equitable and culturally safe mental health services.

Oxleas NHS Foundation Trust

Reducing Inequalities in Restrictive Practice: From Data to Action

Presented by Oxleas NHS Foundation Trust, this session focused on reducing inequalities in restrictive practice through the lens of the Patient and Carer Race Equality Framework (PCREF). The presentation explored how data, lived experience, trauma-informed care and practical service improvements can work together to reduce the use of restraint, seclusion and restrictive interventions while addressing racial disparities.

The presenters explained that restrictive practices are not experienced equally across all communities. Evidence shows that people from some racialised groups are more likely to experience restrictive interventions, making this both a safety issue and a race equity issue. Oxleas therefore sought to identify practical actions that could improve care while simultaneously reducing inequalities.

Listening to Staff and Stakeholders

As part of their PCREF work, Oxleas engaged staff, service users and stakeholders to identify priorities for change. The feedback was grouped and ranked to establish the strongest starting points for improvement.

The consultation identified two immediate workstreams:

Debrief and Escalation
Trauma-Informed Care

The presentation emphasised that participants did not ask for abstract policy changes. Instead, they identified practical improvements that could be implemented directly within services.

Highest-Ranked Priorities

The most frequently identified priorities included:

A key message from the slide was that stakeholders wanted changes that would directly affect day-to-day care, staff behaviour and patient experience.

Workstream One: Debrief and Escalation

The first workstream focused on reducing escalation in the moment and improving learning after incidents occur.

The framework was organised into three stages:

Before Escalation

Staff are encouraged to:

Pause before escalating situations.
Ensure one lead staff member takes responsibility.
Consider alternatives earlier.
Use an equity prompt before moving to hands-on interventions.

The emphasis was on slowing decision-making enough to ensure staff are responding to the person’s needs rather than reacting automatically.

During Escalation

The presentation highlighted the importance of:

Clear staff roles.
Defined decision-making thresholds.
Safety scanning.
Choosing the least restrictive option available.
Clear documentation of rationale.
Protecting clinical judgement while maintaining accountability.

The objective is to ensure restrictive interventions are only used when absolutely necessary and are proportionate to the situation.

After the Incident

Learning after incidents was considered equally important.

Actions included:

Joint staff and patient learning.
Independent facilitation where possible.
Advocacy and peer support.
Reviewing and updating care plans.

The focus was not simply on recording incidents but on understanding what happened and preventing repetition.

Next Steps

The presentation concluded with a clear action plan for the coming period.

Planned Actions

Agree a Trust-wide escalation and post-incident learning standard.
Begin testing the “Pause Before Escalation” approach on selected wards.
Finalise a Trust Trauma-Informed Care (TIC) protocol and minimum training standard.
Strengthen dashboard reporting and improve protected-characteristics data quality.
Embed lived experience into the design and review of changes.

These actions reflect the Trust’s commitment to moving from discussion to implementation.

Learning Across London

The presenters also highlighted the importance of collaboration across London’s mental health trusts.

Areas identified for collaboration included:

Common data definitions.
Co-produced interventions.
Trauma-informed escalation practice.
Culturally informed post-incident learning.
Peer review of ward-level improvement projects.

This reflected one of the key themes running throughout the conference: that race equity work is strengthened when trusts learn from each other rather than working in isolation.

North East London NHS Foundation Trust (NELFT)

North East London NHS Foundation Trust (NELFT) presented its PCREF work through the lens of national competencies, demonstrating how race equity can be embedded into everyday clinical practice rather than being treated as a standalone initiative. The presentation, delivered by Erica Deti, Patient and Carer Race Equality Lead, highlighted the importance of developing a workforce that is confident, culturally competent and able to respond effectively to the needs of diverse communities. NELFT emphasised that meaningful change requires organisations to move beyond awareness and into practical action, ensuring that race equity is reflected in leadership, service design and frontline care.

A key focus of the presentation was the development and implementation of national PCREF competencies, designed to support staff at all levels in understanding racial inequalities and their impact on mental health outcomes. Erica explained how these competencies help staff build the knowledge, skills and confidence needed to challenge inequity, engage meaningfully with service users and carers, and contribute to culturally responsive services. The Trust also stressed the importance of involving people with lived experience throughout this process, ensuring that learning is informed by real experiences rather than theoretical concepts alone.

The presentation reinforced the message that achieving race equity is a continuous journey rather than a destination. NELFT shared examples of how the Trust is embedding co-production, reflective practice and accountability into its approach, while encouraging staff to consider how their decisions influence patient experiences and outcomes. By focusing on workforce development, lived experience leadership and organisational learning, NELFT demonstrated how PCREF can act as a catalyst for long-term cultural change, helping to create services that are safer, fairer and more responsive to the communities they serve.

A second NELFT presentation was delivered from local community organisations and Project Zero. This session focused on partnership working with local barbershops, voluntary organisations and community groups as a means of improving engagement with racialised communities. The speakers described how trusted community settings can help bridge gaps between services and populations that may feel excluded from traditional healthcare pathways.

Carer Spotlight

Matthew McKenzie and PCREF Carer Poetry

One of the most powerful moments of the afternoon came during the Carer Spotlight, where carers used poetry to share personal experiences of supporting loved ones through mental health services. The session moved beyond statistics, policies and organisational frameworks to remind attendees of the human stories that sit behind every discussion about race equity, access and care. The poetry was delivered by Matthew McKenzie and fellow carers, creating a reflective and emotional space that grounded the conference in lived experience. Through spoken word and personal reflection, the audience was invited to consider what it truly means to care, advocate and persevere within systems that do not always recognise the voices of carers.

A recurring theme across the poems was the often invisible role of carers. Several pieces explored the emotional labour involved in supporting a family member through periods of crisis, while also navigating complex services and systems.

Here is the poem from Matthew McKenzie taken from his collaborative book (in development) – Unpaid, Unseen and Yet Unbroken

The poems highlighted feelings of exhaustion, responsibility and uncertainty, but also resilience and determination. Listeners heard about the challenges of balancing personal wellbeing with caring responsibilities, and the reality that carers frequently become experts in supporting their loved ones while receiving little recognition themselves. The poetry gave voice to experiences that are often hidden from formal reports and performance data, yet have a profound impact on individuals and families.

Another important theme was the need for genuine partnership between services, service users and carers. The poems reflected frustrations when carers felt excluded from conversations, ignored during decision-making or treated as outsiders despite their deep understanding of the person they support. At the same time, they celebrated examples of compassionate practice, where professionals listened, worked collaboratively and recognised carers as valuable partners in recovery. These reflections connected strongly with the wider messages of PCREF, reinforcing that co-production is most effective when carers are respected, included and treated as equal contributors rather than passive observers.

Central and North West London NHS Foundation Trust (CNWL)

Presented by J’nelle James, Acting Assistant Director of Culture and Equality, Diversity and Inclusion, Central and North West London NHS Foundation Trust (CNWL) showcased one of the conference’s most innovative examples of co-production through the Black Men’s Wellbeing Festival 2026. The presentation focused on how Milton Keynes Talking Therapies worked with Black men, community leaders and local organisations to improve engagement with NHS mental health services. Rather than expecting communities to come to services, CNWL demonstrated how services can go out into communities, build relationships and create spaces where conversations about mental health feel safe, relevant and culturally meaningful.

The presentation explained that the project began during Black History Month in October 2022, when Milton Keynes Talking Therapies hosted a free face-to-face wellbeing session for Black men at Stantonbury Health Centre. The event explored themes including racial trauma, stigma, family relationships, cultural influences and self-worth. What began as a single wellbeing session quickly revealed a significant unmet need within the community. Participants spoke openly about barriers to accessing support and the lack of culturally relevant mental health conversations, leading the team to recognise that a longer-term programme of engagement was needed.

CNWL emphasised that trust cannot be created through a single event or consultation exercise. Instead, trust is earned through visibility, consistency and genuine partnership. The Trust described a three-year journey of listening, learning and working alongside local communities, which ultimately led to the development of the Black Men’s Wellbeing Festival. The project became an example of how PCREF principles can be applied in practice by ensuring that communities are involved in shaping solutions rather than simply being consulted after decisions have already been made.

Building Trust Through Co-Production

A central message throughout the presentation was that “trust isn’t built overnight.” The festival emerged through a deliberate process of relationship-building and community engagement. CNWL outlined six stages that helped transform an initial wellbeing event into a large-scale community-led initiative.

The first stage focused on initial engagement, beginning with the October 2022 wellbeing session. Following this, the team moved into a listening and learning phase, hosting webinars, training sessions and community discussions to understand what Black men wanted from mental health services. Rather than assuming solutions, the Trust spent time listening to experiences and identifying priorities directly from community members.

The next stages involved meeting people in community spaces, strengthening relationships with local organisations and businesses, amplifying messages through trusted community networks and broadening engagement across Milton Keynes. The presentation highlighted that every stage was developed collaboratively with community partners, ensuring that ownership of the programme remained shared rather than NHS-led.

Key Stages of the Journey

Initial engagement through Black History Month wellbeing events.
Listening sessions and community conversations.
Presence at local community gatherings and celebrations.
Building partnerships with local organisations and businesses.
Using trusted networks to amplify messages.
Expanding engagement through media, events and outreach.

The Black Men’s Wellbeing Festival 2026

The culmination of this work was the launch of the Black Men’s Wellbeing Festival 2026, a community-led programme designed to improve access and engagement for Black men within mental health services. Running weekly between April and May 2026, the festival brought together clinicians, community leaders, lived experience speakers and local organisations to create open conversations about wellbeing, identity and mental health.

The programme tackled subjects that participants themselves had identified as important. Rather than focusing solely on clinical mental health conditions, the festival explored the wider social, cultural and personal experiences that influence wellbeing. This reflected a more holistic understanding of mental health and recognised that issues such as identity, masculinity, family expectations and discrimination all play an important role in people’s wellbeing.

The festival also demonstrated how NHS services can become more accessible when support is delivered in partnership with trusted community figures. By bringing together professionals and community leaders, CNWL created opportunities for conversations that may not otherwise take place within traditional healthcare settings.

North London NHS Foundation Trust

Equity and Health Inequalities Strategy 2026–2030: “Inclusion in Action”

North London NHS Foundation Trust presented its new Equity and Health Inequalities Strategy 2026–2030, centred on the theme of “Inclusion in Action.” The presentation highlighted the Trust’s ambition to embed equity into every aspect of organisational culture, leadership, workforce development and service delivery. Rather than treating equality and health inequalities as separate workstreams, the strategy positions inclusion as a fundamental principle underpinning better mental health outcomes, improved staff experiences and stronger communities. The Trust’s vision was summarised through the phrase: “Better Mental Health. Better Lives. Better Communities.”

A key theme throughout the presentation was the recognition that addressing inequalities requires action at both organisational and system levels. The strategy aligns with the Trust’s broader five-year organisational goals and is supported by the North London Way, Trust values, leadership framework and staff network structures. The presenters emphasised that lived experience, staff insight and community partnership have been central to shaping the strategy, ensuring that it reflects the realities of the diverse populations served across North Central London.

The presentation also highlighted the importance of shared accountability. Equity was presented not as the responsibility of specialist equality teams alone, but as a collective responsibility across leadership, clinical services, operational teams and partner organisations. Through this approach, the Trust aims to create sustainable cultural change while reducing inequalities experienced by both service users and staff.

Strategic Ambitions and Organisational Change

A major focus of the presentation was how the Trust intends to turn principles into practical action. The strategy builds upon existing organisational priorities while introducing a stronger and more explicit focus on equity and inclusion. The presenters described a framework that links the Trust’s strategic aims, leadership expectations, workforce culture and service improvement activity into a single coherent approach.

The strategy is closely connected to the work of the Staff Networks Alliance, which brings together a range of staff networks representing diverse communities and experiences. The Trust described these networks as essential partners in shaping policy, challenging inequalities and ensuring that organisational decisions are informed by lived experience. This collaborative model reflects a commitment to co-production and shared leadership rather than top-down decision making.

The presentation emphasised a set of organisational values that support inclusive practice, including visibility, accountability, compassion, collaboration and empowerment. These principles are intended to guide both staff behaviour and organisational decision-making. By embedding these values throughout the Trust, leaders hope to create a culture where inclusion becomes a routine part of everyday practice rather than a separate programme of work.

Building on Existing Foundations

The final section of the presentation focused on progress already achieved and the foundations that have been established to support future work. The Trust outlined a number of significant developments, including the creation of an Equality, Diversity and Inclusion (EDI) Programme Board, which provides governance and oversight for inclusion and health inequalities initiatives. This governance structure helps ensure that equity remains a strategic priority and is monitored at senior levels of the organisation.

The Trust has also introduced several initiatives aimed at strengthening accountability and supporting underrepresented groups. These include the launch of the Staff Networks Alliance, the development of anti-racism principles, positive action programmes, reciprocal mentoring opportunities and improvements in disability inclusion through the Reasonable Adjustments Passport scheme. The Trust reported achieving Disability Confident Level 2 status, reflecting progress in creating a more inclusive workplace environment.

Importantly, the presentation highlighted the implementation of the Patient and Carer Race Equality Framework (PCREF) as a key mechanism for advancing anti-racist practice and addressing inequalities within mental health pathways. Alongside embedding the North London Way as a shared organisational framework, the Trust views PCREF as a central component of its strategy for reducing inequities and improving outcomes. The overall message was that meaningful progress has already begun, but sustained effort, partnership and accountability will be required to achieve the ambitions set out in the Equity and Health Inequalities Strategy 2026–2030.

A recurring message from the closing discussion was that race equity remains everybody’s responsibility. While significant progress has been made, panellists acknowledged that much work remains. Delegates left with a renewed commitment to collaboration, stronger partnerships with carers and communities, and a shared determination to ensure that PCREF continues to drive meaningful and measurable change across London’s mental health services.

National Ethnic mental health Carer Forum : May Update 2026

Blog by Ethnic Mental Health Carer forum Chair – Matthew McKenzie

The May 2026 Ethnic Mental Health Carers Forum brought together carers, researchers, clinicians, community leaders, and representatives from mental health organisations across England. Although attendance was smaller than usual, the discussion was rich, honest, and highly informative, covering Mental Health Act reform, carers’ experiences, service inequalities, innovative approaches to care, and new research opportunities.

For those who were unable to attend, this blog provides a comprehensive overview of the meeting, including key presentations, audience questions, responses from speakers, and useful resources shared during the session.

Opening Remarks

As the chair, I welcomed attendees and outlined the agenda. The meeting focused on following:

Mental Health Act research and reform
Carers’ experiences supporting loved ones through detention
Findings from a major East Sussex carers research project
Resources for carers under the Mental Health Act
Electronic Health Records and future developments
Wider discussions on racial trauma, inequalities, and service improvement

The meeting also provided opportunities for networking, sharing lived experiences, and highlighting innovative projects happening across the country.

Research Study: Supporting a Loved One Through Mental Health Detention

Dr Maeve Conneely from University College London opened the meeting with a presentation on a new research study exploring the experiences of people who have been assessed or detained under the Mental Health Act, as well as the experiences of family members and carers who supported them through that process. The study has been commissioned as part of the wider programme of Mental Health Act reform and aims to understand how the current “Nearest Relative” provisions operate in practice before changes are introduced under the new legislation.

Dr Conneely explained that researchers are particularly interested in hearing from carers who were involved in supporting a loved one but who were not formally recognised as the “Nearest Relative” under the existing legal framework. She highlighted that these experiences are especially important because they can reveal where carers have been excluded from decision-making, denied access to information, or prevented from contributing to assessments despite playing a significant role in supporting the individual concerned. The study is open to anyone aged 16 or over who has direct experience of Mental Health Act assessments, detentions, Community Treatment Orders, holding powers, or related interventions, whether as a patient or as a supporter.

The research is linked to ongoing reforms of the Mental Health Act and seeks to understand how the “Nearest Relative” provisions currently operate before changes are implemented.

Who Can Take Part?

The study is looking for:

People who have been detained under the Mental Health Act
Family members and carers who supported someone during detention or assessment
Individuals who should have been involved as a nearest relative but were not
Anyone aged 16 or over with relevant experience

Interviews are conducted online and participants receive a £30 shopping voucher as a thank-you for their time.

Key Question from Participants

Q: Does the study include situations where someone should have been involved but wasn’t?

Response: Yes. Researchers are particularly interested in understanding experiences where carers or family members were excluded from decision-making processes despite playing a significant caring role.

Another Important Question

Q: Do carers need permission from the person who was detained before participating?

Response: No. Carers are sharing their own experiences and therefore only need to provide their own consent.

Discussion Themes

Participants highlighted:

Long-standing inequalities affecting Black communities under the Mental Health Act.
The overuse of psychiatric labels without sufficient exploration of trauma.
The need to understand why some individuals receive significantly different experiences of care, including access to private mental health facilities.
Concerns about trust in mental health services and the lasting impact of poor experiences across generations.

Several carers committed to taking part in the study to ensure lived experience informs future policy.

East Sussex Carers Research Project: What Carers Told Us

Age Angiolini presented findings from a year-long carers-led research project examining the experiences of family carers supporting people with serious mental illness across East Sussex. The study was developed in response to repeated concerns raised by carers at local support meetings and sought to capture their experiences of interacting with mental health services provided by the Sussex Partnership Foundation Trust (SPFT).

Although the research received 71 responses, representing only a proportion of the carers population in the region, the findings revealed a striking consistency in the challenges carers face. The survey explored themes including carers’ involvement in care planning, communication with services, consent and confidentiality, quality of care, crisis support, and priorities for improvement. Among the most significant findings were that 72% of carers reported being only sometimes involved or not involved at all in their loved one’s care, 73% felt services relied too heavily on carers, and 72% said they regularly had to advocate to secure appropriate support. The research concluded that many carers feel undervalued, excluded from decision-making, and left carrying significant responsibilities without adequate recognition or support.

The study gathered responses from carers supporting people with:

Schizophrenia
Bipolar disorder
ADHD
Autism
Complex neurodiverse conditions

Although the sample size was relatively modest, the findings revealed significant and consistent concerns.

Key Findings from the report

Carers Feel Excluded

72% reported being only sometimes involved or not involved at all.
73% felt services relied too heavily on carers.
72% said they had to advocate strongly to secure appropriate care.

Communication Failures

Participants reported poor communication between:

Mental health services
Assessment teams
Social services
Mental health liaison teams

Many carers described communications as inconsistent, unclear, and difficult to navigate.

Consent and Confidentiality

A recurring concern was that confidentiality procedures are often applied rigidly, preventing carers from sharing vital information during crises.

Carers argued that this can actively undermine effective care.

Quality of Care Concerns

The research found:

90% reported insufficient care.
Significant concerns around continuity of care.
A strong desire for dedicated care coordinators.
Widespread frustration with crisis services.

Crisis Support is Not Working

Many carers reported that:

NHS 111 is often inadequate for mental health crises.
A&E is frequently unsuitable for people experiencing mental distress.
Services remain reactive rather than preventative.

Calls for Change

Recommendations included:

Better crisis pathways
Improved coordination between services
More trauma-informed approaches
Greater therapeutic support
Increased family involvement
Better support for neurodiverse individuals

The presentation sparked considerable discussion, with many attendees noting that the findings reflected experiences they had encountered for years.

Carers Speak Out: Frustration, Trauma and the Need for Change

One of the most powerful aspects of the meeting was hearing directly from carers.

Several participants reflected on decades of involvement with mental health services and expressed concern that despite repeated reviews, consultations, and reforms, many of the same issues continue to persist.

Common themes included:

Institutional racism
Poor communication
Exclusion of carers
Over-medicalisation
Lack of trauma-informed care
Inadequate support during crises

A number of attendees emphasised that families often become de facto care coordinators, managing appointments, services, medications, and crises while receiving little support themselves.

One participant observed:

“They plan, medicate and treat. We care. Our worlds don’t meet.”

Others highlighted the impact of racial trauma and the way mental health services can fail to recognise the cultural context of distress.

Open Dialogue: A Different Way Forward?

Ren Reins introduced the concept of Open Dialogue, an internationally recognised approach to mental health care that focuses on relationships, networks, and collaborative conversations.

Open Dialogue aims to:

Bring families and professionals together
Reduce fragmentation between services
Focus on lived experience
Build trust
Improve recovery outcomes

Ren explained that major NHS-funded trials are underway and encouraged carers to learn more about the approach.

The discussion generated significant interest, particularly from attendees looking for alternatives to traditional medical models of care.

Nearest Relative Resources Project

Professor Judy Laing from the University of Bristol provided an update on an innovative project designed to support family members and carers who hold, or may hold, responsibilities under the Mental Health Act’s “Nearest Relative” provisions. Drawing on previous research with carers and mental health professionals, Professor Laing explained that many family members who find themselves in the Nearest Relative role often receive little information, guidance, or emotional support despite carrying significant legal responsibilities. In response, her team secured funding to develop a free, co-produced online resource that helps carers understand their rights, responsibilities, and options when supporting a loved one through mental health assessment, detention, and treatment.

Developed in partnership with carers, family members, mental health professionals, and organisations including Mind, Rethink Mental Illness, and Carers Trust, the website provides practical information, downloadable tools, guidance for conversations with professionals, and resources to help carers look after their own wellbeing. Professor Laing stressed that the project has been shaped directly by the experiences of those who have undertaken the role themselves, ensuring that the guidance reflects the realities and challenges carers face in practice rather than simply explaining legal processes.

The project emerged from research identifying significant gaps in information and support for people carrying out the “Nearest Relative” role.

What Has Been Developed?

The project has created a free online resource containing:

Information about legal rights
Guidance on conversations with professionals
Practical tools for meetings
Support for carers’ wellbeing
Resources explaining upcoming legal changes

The materials have been co-produced with carers and family members.

Questions Raised

How are diverse communities included?

Participants asked how the project ensures equity and accessibility.

Professor Laing explained that:

People from ethnic minority backgrounds have contributed to development.
Resources are being improved to increase accessibility.
Additional funding is supporting work around inclusion and accessibility.
Translation and alternative formats are being explored.

How is the project promoted?

Discussion focused on ensuring communities are aware of available support rather than resources existing only online.

Professor Laing outlined efforts involving:

Mind
Carers Trust
Mental health services
Local media
Carer forums

How will the new Nominated Person role protect carers who have traditionally been involved in supporting a loved one?

Several participants expressed concern that replacing the Nearest Relative role could unintentionally weaken the involvement of family members who have historically provided substantial support during periods of mental ill-health. Questions were raised about situations where a person may choose someone other than their primary carer to act as their Nominated Person, potentially reducing carers’ ability to access information or participate in key decisions. Professor Laing acknowledged that these concerns have been raised by many carers and explained that the practical details of how the new system will operate are still being developed. She stressed the importance of carers contributing their experiences to ensure that future guidance recognises the valuable role families often play in supporting recovery and maintaining continuity of care.

What support is available when professionals fail to recognise or understand carers’ legal rights?

Attendees also discussed the reality that many mental health professionals are not always familiar with the legal powers and rights associated with the Nearest Relative role. Participants described situations where carers were excluded from discussions, not informed of important decisions, or felt unable to challenge professional opinions because they lacked confidence in their understanding of the law. In response, Professor Laing highlighted that one of the main objectives of the Bristol resources project is to bridge this knowledge gap by providing practical tools, suggested questions, and clear explanations of carers’ rights. She noted that the project is also developing resources aimed at professionals themselves, with the goal of increasing awareness and ensuring that carers’ legal rights are better understood and respected across mental health services.

Attendees welcomed the commitment to increasing visibility.

Electronic Health Records and Future Developments

Dr Anna De Simoni, an Academic GP and Associate Professor of Primary Care at Queen Mary University of London, presented an early-stage research proposal focused on how electronic health records could be used to better understand and map the social support networks surrounding people living with multiple long-term health conditions.

Dr De Simoni sought direct feedback from carers to help shape the project before a formal funding application is submitted. She explained that while healthcare professionals can usually identify a patient’s next of kin and household members through existing GP records, they often have very limited understanding of the wider support networks that play a vital role in a person’s wellbeing.

These networks may include family members, neighbours, friends, faith groups, community organisations, carers, and others who provide practical and emotional support. The research aims to explore whether technology and electronic health records can help healthcare professionals better recognise these support systems and use that information to improve care planning, reduce unnecessary hospital admissions, and enhance quality of life for people living with complex health conditions.

The discussion generated considerable interest, particularly regarding:

Information sharing
Integration across services
Support for carers
Data protection concerns
Improving continuity of care

Several participants expressed enthusiasm about the potential benefits while also raising questions regarding privacy and access to NHS information.

Questions and Answers from Dr Anna De Simoni’s Presentation

Q: What problem is this research trying to solve?
A: Dr De Simoni explained that healthcare professionals often know very little about the wider support network surrounding a patient. While medical records may identify a next of kin or people living in the same household, they rarely capture the full picture of who is actually providing practical, emotional, or day-to-day support. The project aims to better understand these social networks and use that information to improve care planning and patient outcomes.

Q: Who is the research aimed at?
A: The initial focus is on people living with multiple long-term health conditions, including illnesses such as COPD and other complex health needs e.g mental health. The project seeks to understand how stronger recognition of support networks could improve quality of life, reduce hospital admissions, and support people to remain independent for longer.

Q: How would patients contribute information about their support network?
A: The proposal includes the use of a Universal Care Plan through the NHS App. Patients would be able to enter information themselves about what matters to them, who supports them, how they prefer to be treated, and what should happen if their health deteriorates. This information could then be viewed and updated by relevant healthcare professionals.

Q: What role could carers play within the proposed system?
A: Participants highlighted that carers often provide the majority of practical support but are frequently invisible within healthcare systems. The proposed approach could make carers more visible by helping professionals understand who is involved in supporting a patient and what role they play in maintaining wellbeing and independence.

Q: How will patient confidentiality and data protection be managed?
A: Concerns were raised about privacy and the security of NHS data. Dr De Simoni explained that information governance, GDPR compliance, and data protection would be central to the project. Specialists in privacy and information governance would be involved to ensure that any information collected is handled safely, appropriately, and with proper consent.

Key Discussion: Why Are Carers Still Fighting the Same Battles?

A recurring theme throughout the meeting was the sense that many challenges identified today are the same challenges carers raised ten or twenty years ago.

Questions included:

Why are services still fragmented?
Why do carers continue to feel excluded?
Why are communication problems so persistent?
Why is trauma often overlooked?
Why do inequalities remain entrenched?

Participants reflected on whether the issue is primarily one of resources, leadership, service design, or culture.

Many agreed that meaningful change requires carers to remain actively involved in shaping policy and service delivery.

Resources and Links Shared During the Meeting

Mental Health Act Research Study

Email:
nrmha@ucl.ac.uk

Eligibility:
People aged 16+ who have experience supporting someone assessed or detained under the Mental Health Act.

Nearest Relative Resources Website

Welcome to the resources

Nearest Relative Resources Impact Report

https://bpb-eu-w2.wpmucdn.com/blogs.bristol.ac.uk/dist/a/1212/files/2026/05/2026-05-Nearest-Relatives-Resources-impact-report.pdf

POPs Facebook Group

https://www.facebook.com/groups/POPSUnitedKingdom

A carers support group recommended during discussion as a source of peer support and shared experience.

Final Reflections

The May 2026 Ethnic Mental Health Carers Forum highlighted both the challenges carers continue to face and the determination across the sector to improve outcomes.

From Mental Health Act reform and carers’ rights to innovative approaches such as Open Dialogue, the meeting demonstrated the importance of bringing together lived experience, research, policy, and practice.

Several speakers reminded attendees that change often begins with carers sharing their stories, participating in research, challenging poor practice, and helping shape future services.

The forum remains an important space where those voices can be heard.

Voices & Verses PCREF Carer event

By Matthew McKenzie, Cygnet PCREF Carer Lead

On Tuesday 28th April 2026, from 2:00pm to 4:00pm, we came together at Cygnet Churchill in Lambeth for what was described as a carers poetry event, but in truth, it became something much deeper.

It became a space where carers could speak, reflect, and be heard.

I hosted the session not just as a PCREF Carer Lead, but as someone with lived experience. That shaped everything the tone, the structure, and the intention behind every part of the agenda.

I made it clear: this was a safe, inclusive, and optional space. No pressure to perform. No expectation to share. Just an invitation.

We began with a simple check-in:
“What’s one word you’re arriving with?”

Opening Readings: Creating a Shared Starting Point

I started with a couple of my own poems, drawn from my work around carers, stigma, and racial inequality in mental health.

As shown above, one piece explored the question of who is listened to and who is overlooked within systems. Another focused on stigma and shame, particularly how cultural expectations and institutional barriers can compound the experience of caring.

These weren’t just readings—they were a way of opening the room.
An invitation for others to see themselves reflected.

Featured Performer: Karen Ibrahim

We then heard from Karen Ibrahim, whose poetry captured something deeply familiar to many carers the quiet, often invisible emotional labour of caring.

Her piece reflected the silence between carer and loved one, the fear of saying the wrong thing, and the reality of sitting with someone in distress without always knowing how to help. It spoke to that fragile balance carers hold every day.

Karen also shared a series of haiku-style reflections, drawn from carer experiences—short, powerful snapshots of emotion, nature, and coping. They reminded us that even the smallest expressions can carry deep meaning.

Guided Writing Exercise #1: Bringing PCREF to Life

We then moved into the first guided writing exercise.

I paired participants and asked them to:

Match PCREF-related concepts (like equity, advocacy, inclusion, resilience) to their meanings
Use those words to create a short poem or reflection

It was about translating PCREF from policy into lived language.

The results were powerful. Carers wrote about 4 poems altogether, below were the themes, which will be included in the new PCREF poetry book I am working on.

Feeling unseen and unheard
Wanting their voice recognised
Breaking down barriers in care
Finding strength through community

One group asked:
“Is my voice not loud enough to be heard?”

I felt that line stayed with me, because it captures exactly what PCREF is trying to address.

Performer & Open Mic (Round 1)

We then moved into our first round of performances, where carers shared both prepared and newly written work.

I felt Brenda brought something unique, blending cultural storytelling and poetry rooted in Jamaican heritage. She reflected on traditional knowledge, community wisdom, and the use of language and folklore as a way of preserving identity and healing. Her use of dialect and storytelling highlighted how culture shapes how we express and understand care.

Next was Annette Davis shared a piece centred on the identity of being a carer, capturing the emotional strain, lack of recognition, and inner strength that comes with the role. Her poem questioned what it means to be labelled a “carer” while navigating burnout, resilience, and the need for self-care.

Next up was Faith Smith and Nadine sharing a powerful reflection on system inequality, exploring the daily pressures of navigating services, the lack of accessible support, and the feeling of being caught in processes that don’t always respond to real-life needs.

Each piece added another layer to the conversation, with different perspectives, but shared truths.

Break & Connection

We paused for a short break and refreshments provided by the kind and wonderful staff at cygnet, but for the poetry event the conversations didn’t stop.

Carers continued to connect. Share stories. and reflected on what they had heard.

This is something I always emphasise, community doesn’t just happen in structured sessions. It happens in those in-between moments.

Creative Exercise session #2: Exploring PCREF Language

After the break, I introduced a second exercise, which was more interactive and reflective.

Participants worked with a word-search style challenge, identifying key PCREF-related terms such as:

Voice
Inclusion
Equity
Community
Trust
Advocacy
Listening
Stereotyping

Rather than writing full poems, we focused on discussion:
Which word stands out and why?

The responses were honest and grounded:

“Listening builds trust.”
“Community is where we belong.”
“Inclusion is what drives change.”
“Stereotyping still shapes how we’re treated.”

This is where PCREF becomes real, when people recognise themselves within it.

Performer & Open Mic (Round 2)

We continued with a second round of performances.

Carers shared reflections shaped by:

Cultural identity
Personal caring journeys
The emotional impact of systems
Hope, resilience, and change

Then ended with cultural carer songs by Brenda, see the video of part of the PCREF poetry session below.

In the end PCREF is about improving outcomes for racialised communities—but it cannot succeed if it remains purely clinical.

We:

Translated PCREF into lived experience
Used creativity to engage carers meaningfully
Created a culturally responsive space
Positioned carers as equal voices not passive participants

If you are caring for someone using Cygnet services, contact Family&Friends@cygnethealth.co.uk to join our Voices & Verses poetry group