My latest poetry video, “Gatekeeping Care,” explores the barriers minority ethnic unpaid carers can face when trying to navigate mental health services.
This is where unwritten rules, complicated medical language and unexplained carer rights can leave people struggling to understand how to obtain support.
Unpaid carers can also have their concerns not taken seriously.
The poem also reflects on what it feels like when decisions are made without carers and their cultural or religious beliefs are overlooked.
Through this poem, I want to raise awareness of why the Patient and Carer Race Equality Framework (PCREF) matters to carers and families.
I feel mental health services must listen to carers, communicate clearly and recognise them as equal partners rather than leaving them feeling judged, invisible or powerless.
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.
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.
By Matthew McKenzie – Carers UK ambassador / Chair of National ethnic mental health carers forum
Are you a Black unpaid carer supporting a family member with a learning disability (sometimes referred to as an intellectual disability) who has experienced mental health difficulties?
Have you ever tried to access mental health support on their behalf? This could include contacting services such as Community Learning Disability Teams, CAMHS, Community Mental Health Teams, Talking Therapies or other mental health services.
If so, your experiences matter.
Lauren Heath, a second-year Trainee Clinical Psychologist at the University of Southampton, is conducting doctoral research exploring the experiences of Black carers who have accessed, or attempted to access, mental health support for a family member with a diagnosed learning disability.
We know that Black unpaid carers often face additional challenges when trying to navigate health and social care systems. Too often, their experiences are unheard or underrepresented in research. This study aims to better understand those experiences and help inform more culturally sensitive and inclusive services in the future.
You may be eligible to take part if you:
Identify as Black.
Have significant caring responsibilities for a family member with a diagnosed learning disability (or intellectual disability).
Have accessed, or attempted to access, mental health services on their behalf.
Taking part will involve:
A confidential interview lasting approximately 1.5 hours via Microsoft Teams.
Your responses will be anonymised once all interviews have been completed.
You will receive a voucher to thank you for your time and contribution.
Lauren previously worked within Community Learning Disability Teams across the UK and became interested in understanding why so few Black families appeared to be accessing these services. Her doctoral research hopes to amplify the voices of Black carers and contribute towards improving culturally sensitive support for families in the future.
If you think this research may apply to you, or someone you know, please consider taking part or sharing this opportunity within your networks.
To find out if you are eligible, you can complete the short questionnaire or contact Lauren directly at L.Heath@soton.ac.uk.
Your lived experience could help shape future services for Black families and carers.
By Matthew McKenzie – NHS England involvement, Chair of National ethnic mental health carer forum
As carers, your voices are the most powerful tools we have to change how healthcare is delivered. Every day, you navigate complex systems to support your loved ones, seeing firsthand what works and crucially where the gaps are.
Right now, NHS England’s Office of the Chief Allied Health Professions Officer (CAHPO) is developing its next big strategy: The AHP Framework for System Impact for England (2027–2032). Because this strategy is built on the core values of anti-racism, co-production, and sustainability, it is absolutely vital that ethnic minority mental health carers are at the center of this conversation.
What is an AHP and Why Do They Matter to You?
Allied Health Professionals (AHPs) make up the third-largest workforce in the NHS. They aren’t doctors or nurses, but they are the specialists who focus on recovery, independence, and keeping people healthy.
There are 14 distinct AHP roles, many of which are essential in mental health and holistic care, including:
Art, Drama, and Music Therapists: Helping individuals express and process complex feelings.
Occupational Therapists: Supporting people to regain life skills and independence.
Dietitians & Physiotherapists: Improving physical health, nutrition, and mobility, which heavily impact mental wellbeing.
Speech and Language Therapists: Assisting those with communication or swallowing difficulties.
The new 2027–2032 framework will dictate how these professionals operate, how easily you can access them, and how they support families over the next five years.
The Six Key Pillars of the New Strategy
The NHS is currently running a national consultation (open until 18th September 2026) to find out what matters most to patients and carers. They want to hear your views across six key areas:
Pillar
What it means for Carers
1. Safe, High-Quality & Accessible Services
Ensuring your loved ones get the right care, quickly and safely, without facing unfair barriers.
2. Keeping People Healthy
Shifting the focus toward prevention and early support before a crisis hits.
3. People and AHP Workforce
Building a skilled, inclusive, and culturally competent workforce that understands diverse communities.
4. Working Differently
Delivering care in more appropriate, comfortable settings—like community centers or at home.
5. Research, Improvement & Innovation
Turning real-world evidence and carer experiences into better everyday medical practice.
6. Data, Digital & Technology
Using digital tools and tech wisely to improve care access without leaving people behind.
Have Your Say: Join Our National Ethnic Mental Health Carers Forum
We have a massive opportunity to speak directly to the people writing this strategy. You are warmly invited to join our upcoming virtual forum to share your experiences, learn about groundbreaking new carer research, and hold a direct Q&A with NHS leadership.
Event Details:
Date: Friday, July 31st
Time: 10:30 AM BST Start
Platform: Zoom
You can also feed back on the strategy using the QR code
What’s on the Agenda for National Ethnic MH carer forum July 31st?
Our packed morning features incredible advocates and policy makers who want to hear from you:
10:35 AM | Local Carer Insights:Dr. Ida Doherty (King’s College London) will present vital new research on supporting ethnic carers in South West London.
10:45 AM | Health Equality Focus: A special guest segment featuring Ruby Neish (UCL) discussing healthcare experiences regarding cancer and Black women.
11:00 AM | Direct NHS England Engagement: Steve Tolan (Deputy Chief AHP Officer) and Barry O’Donovan (Senior Programme Manager, NHS England) will join us to discuss the new strategy and listen to your feedback.
11:20 AM | Mental Health Trust Updates: Real-world updates from local mental health trusts, including insights from Linda Thomas from West London NHS trust
11:40 AM onwards | Regional Perspectives & Systems Change: Discussions with Julia G. (Carers East Kent), the Carers West Sussex study team, and Bren McInerney representing the Race Equality Observatory.
Your Voice is the Missing Piece: If we want an NHS that is truly anti-racist, co-produced, and accessible, we have to show up and speak up. This forum is a safe, supportive space designed to amplify your lived experiences.
How to Join: Please check your email for the secure Zoom link, or visit the link below. We look forward to seeing you there on July 31st at 10:30 AM!
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.
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.
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.
If you weren’t able to join us for this month’s online forum, you missed a deeply insightful session packed with research updates and honest conversations. As a carer myself, I know how hard it is to find time for these meetings, so I’ve put together this expanded summary to keep you in the loop on the vital work being done for our community.
Meeting Agenda
Welcome and Intro: The role of the Patient Care Race Equality Framework (PCREF).
Speaker 1: Brenda Hayaka (King’s College London): Findings on ethnic inequalities in healthcare and the new “Interception” study.
Q&A Session: Addressing dementia stigma, medication, and language barriers.
Spirituality & Faith: Insights from Tuulia Castledine (Chaplain at SWLSTG) on recovery and holistic care.
Speaker 2: Becky Forster (University of Southampton): Supporting carers facing harmful or upsetting behaviors.
Local Advocacy: Healthwatch Croydon’s role in gathering carer feedback.
Closing: “Rooted and Growing” (A PCREF poem).
Key Speaker: Brenda Hayaka – The Interception Project
Brenda shared findings from her previous work on ethnic inequalities and introduced her new study on Multiple Long-Term Conditions (MLTCs).
Brenda Hayaka opened her keynote by sharing the heart behind her work on ethnic inequalities in healthcare. Drawing on her previous research, she described how minoritised ethnic patients and their carers often face significant challenges navigating multiple long-term conditions (MLTCs) with little support or recognition. She emphasized that while global interventions exist for conditions like diabetes and depression, there is a notable gap in UK-based research specifically addressing MLTCs in minoritised communities. This “major evidence gap” became the driving force behind her current study, The Interception Project.
What the Research Shows:
Systemic Disadvantage: Minoritized ethnic groups are disadvantaged from the development to the management of multiple conditions.
Poor Continuity of Care: Many experience poor therapeutic relationships with practitioners.
The UK Evidence Gap: While interventions for depression and diabetes exist globally, Brenda found zero studies specifically targeting MLTCs for minoritized groups within the UK healthcare system.
The “Interception” Study:
The Interception Project uses a creative and collaborative method called journey mapping to trace the lived experiences of patients and unpaid carers. Brenda explained that this approach goes beyond merely collecting data: it seeks to identify the pathways people take when seeking help, the barriers they encounter, and the moments where the healthcare system fails them. By listening deeply and reflecting these experiences back to communities, the research provides actionable insights into improving care quality and equity. The study is expanding beyond London to include Coventry and Manchester, recognizing that every community has unique strengths, challenges, and solutions.
Brenda highlighted that a central aim of the project is to co-create actionable recommendations with communities. These recommendations are intended for NHS leaders, commissioners, and policymakers, ensuring that the voices of carers and patients directly inform service design and delivery. She also spoke about the role of trusted community leaders in building access and overcoming barriers such as language differences, mistrust of institutions, and cultural stigma around certain health conditions. Faith communities, she noted, can play a crucial role not only as support networks for participants but also as partners in research, data collection, and advocacy for change.
Throughout her presentation, Brenda emphasized that understanding the journey of carers and patients requires attention to both systemic and relational factors. Minoritised ethnic groups often experience disadvantages in developing and managing multiple conditions, and poor continuity of care can weaken therapeutic relationships with practitioners. By documenting these experiences in detail, the Interception Project aims to fill the evidence gap and provide a roadmap for more equitable, culturally sensitive care. Brenda closed her keynote by reminding attendees that meaningful equity in healthcare begins when previously invisible experiences are recognized and acted upon—a call to transform insight into change.
Spirituality in Care: Forum Introduction by Matthew McKenze
I had the honor of opening the spirituality segment of the forum, emphasizing the vital role that faith and cultural practices play in supporting carers and patients from minoritised ethnic communities. I framed the discussion around the idea that mental health care cannot be fully effective unless it recognizes the whole person, including their spiritual and cultural identity. I highlighted that carers often draw strength, resilience, and meaning from their faith, and that this dimension is frequently overlooked in traditional mental health services.
I encouraged participants to consider spirituality not as an abstract concept, but as a tangible resource that can inform recovery, foster belonging, and enhance coping strategies. By acknowledging spiritual needs, mental health providers can build trust with communities that have historically experienced marginalization or misunderstanding within healthcare systems. I also set the tone for an open and reflective conversation, inviting attendees to share experiences, insights, and challenges related to integrating faith and mental health support.
By positioning spirituality as both a personal and systemic consideration, the forum aimed to explore how services can better engage with faith perspectives in a respectful, inclusive, and practical way. This introduction laid the groundwork for Tuulia Castledine’s keynote, which delved deeper into the spiritual tools and frameworks that support carers and patients in their mental health journeys.
Spirituality in Care: Insights from Tuulia Castledine (SWLSTG)
We were joined by Tula, a Chaplain from South West London and St George’s (SWLSTG), who led a vital discussion on the spiritual dimension of mental health.
Tuulia highlighted that for many carers and patients, faith is not just a personal practice but a framework through which they make sense of mental health crises. Spirituality often provides a lens for understanding why challenges occur and offers a source of hope, helping individuals navigate uncertainty with resilience.
Beyond offering meaning, Tuulia explained that spirituality can serve as a practical tool in recovery. It provides a “language for recovery” that allows carers and patients to express experiences and emotions that might otherwise be difficult to articulate. This sense of connection fosters belonging and strengthens the psychological resources people draw upon when coping with mental health challenges.
Tuulia also stressed the importance of services adopting what she called “spiritual curiosity.” Mental health professionals are encouraged to engage openly with faith perspectives rather than making assumptions or ignoring them. By integrating spirituality into holistic, person-centered care, services can better meet the needs of minoritised ethnic communities.
Finally, Tuulia highlighted a critical concern: when services fail to acknowledge faith, they risk deepening the mistrust that many minority communities feel toward mental health providers. Recognizing and valuing spiritual needs, she emphasized, is not just compassionate—it is a crucial component of equitable care, fostering trust, understanding, and more effective therapeutic relationships.
Summing up Tuulia’s talk
Making Sense of Illness: For many, faith is how they make sense of why a crisis is happening and where they can find hope.
A Tool for Recovery: Spirituality provides a “language for recovery” and can build resilience and a sense of belonging.
Moving Beyond Assumptions: Tula emphasized that services need to show “spiritual curiosity” and include faith as part of holistic, person-centered care.
The “Mistrust” Gap: When services ignore faith, it can deepen the mistrust minority communities feel toward mental health providers.
Carer Voice: Questions & Feedback
The Q&A session was one of the most powerful segments of the forum, offering an unfiltered view of the real-world barriers faced by carers and minoritised ethnic communities. Participants shared candid experiences, highlighting gaps in current mental health support and pressing for practical solutions.
A professional opened the discussion by addressing the critical issue of language and access. She pointed out that many research projects and healthcare initiatives fail because they do not allocate adequate resources for language interpretation or accessibility for disabled individuals. Without these provisions, vital services and studies inadvertently exclude those who may benefit most, leaving carers and patients marginalized.
A carer contributed a particularly thought-provoking critique regarding medication versus conversation. He challenged the system on why Black men are often prescribed stronger medication for longer periods rather than being offered meaningful dialogue and psychosocial support. This raised an important conversation about the need for culturally sensitive approaches to treatment that value listening, understanding, and relationship-building alongside pharmacological intervention.
The unpaid carer also highlighted the challenge of dementia stigma within older generations of minoritised communities. He described how deeply ingrained cultural perceptions can make it difficult for families to seek early support or even acknowledge the condition, creating additional stress for carers. The discussion emphasized that tackling stigma requires both education and culturally attuned engagement, alongside support networks that respect the values and experiences of carers and patients.
A mental health professional from another mental health NHS trust added a vital perspective on community engagement and trust-building. He emphasized that carers often encounter inconsistent communication from services and a lack of culturally informed support, which can leave families feeling isolated and unsupported. He urged healthcare providers to work more closely with community leaders, faith groups, and carers themselves to co-design services that truly respond to the specific needs of minoritised ethnic communities.
Overall, the feedback session underscored that systemic improvements must be informed by the lived experiences of carers. Their insights illuminated the gaps between policy, research, and practical care, reminding the forum that real change is rooted in listening to and amplifying these voices.
Support for Carers in Crisis
Becky Forster introduced a deeply important new study funded by Marie Curie, focusing on carers who find themselves in extremely challenging and sometimes frightening situations. The research aims to better understand the experiences of carers who have faced harmful, aggressive, or abusive behaviors from the person they care for, particularly at the end of life. Becky emphasized that these situations are often overlooked in traditional guidance, leaving carers without the support or strategies they need to cope safely and effectively.
The study seeks to gather real-life experiences from carers, acknowledging that their insights are invaluable in shaping practical and compassionate guidance for healthcare providers. Becky explained that the goal is not only to document these difficult experiences but also to translate them into actionable tools and recommendations for the NHS, ensuring that carers receive timely support, protection, and training when dealing with complex end-of-life care scenarios. By centering the voices of those who have lived through these crises, the project hopes to reduce isolation, increase safety, and enhance the wellbeing of carers facing some of the most emotionally and physically demanding circumstances.
Becky encouraged attendees to participate and share their stories, reassuring them that contributions would remain confidential and that their experiences could directly influence policy and practice. This initiative highlighted the critical need for systemic recognition of carers’ emotional and practical needs, ensuring that they are not left to navigate trauma and stress alone. The session reinforced that understanding, guidance, and compassionate support are essential for carers’ resilience and for providing safe, dignified care to those at the end of life.
Croydon Healthwatch
We concluded the forum with an important reminder from Anna of Healthwatch Croydon, who emphasized that anyone in England has the right to provide anonymous feedback on their care. Anna highlighted that this is more than a formal process, it is a powerful tool for carers, patients, and communities to have their voices heard. By sharing experiences of both excellent and inadequate care, individuals can directly influence how services are shaped, highlight gaps in provision, and push for improvements where they are most needed.
Anna also underscored that feedback plays a crucial role in holding policymakers and healthcare leaders accountable. When carers and patients report their experiences, patterns of inequality, or systemic barriers, it creates evidence that decision-makers cannot ignore. This feedback is particularly vital for minoritised ethnic communities, where historical mistrust and underrepresentation have often left issues unaddressed. She encouraged all attendees to see feedback not as a bureaucratic exercise, but as an instrument of empowerment, helping to drive change at both local and national levels.
I closed the session with my poem “Rooted and Growing,” celebrating that we don’t have to lose our identity to get the care we deserve.
The March session of the National Ethnic Mental Health Carer Forum brought together carers, researchers, NHS professionals and community organisations for a conversation that felt both familiar and urgent.
Chaired by Matthew McKenzie, the forum stayed rooted in what it does best: creating a national grassroots space where lived experience meets systems, and where difficult truths are not avoided.
The agenda reflected that balance clearly:
10:35 – Professor Saffron Karlsen (University of Bristol)
11:20 – King’s College London (Phoebe Averill & team)
11:50 – Parliamentary and Health Service Ombudsman
12:00 – Thomas Ince – Universal Care Plan
Racism and Mental Health: Naming What We Already Know
Professor Saffron Karlsen opened the forum with a presentation that didn’t just describe inequality it explained how it is produced, sustained, and experienced in everyday life.
Drawing on over 30 years of research, Professor Saffron Karlsen is a sociologist at the University of Bristol whose research examines how racism and social inequality affect health, particularly within ethnic minority communities.
she spoke about racism not as a single act or incident, but as something woven into the fabric of society. It operates quietly and persistently, through institutions, through policies, through media narratives, and through the ways people interact with one another. The effect is cumulative. It builds over time, shaping not just opportunities, but health itself.
What made the presentation particularly powerful was how it connected these structural ideas to real human consequences. Racism was described as something that works on multiple levels at once: from overt abuse or violence, to the less visible but equally damaging experience of simply knowing that you live in a society where you may be treated unfairly. That awareness alone carrying the expectation of discrimination creates a constant undercurrent of stress and anxiety.
She explained how this stress doesn’t just sit in the mind. It translates into physical outcomes. People exposed to racism are more likely to experience anxiety, depression, and long-term distress, but also physical health inequalities such as cardiovascular disease. These outcomes are often misunderstood or misrepresented. Too frequently, they are explained away as lifestyle issues diet, exercise, personal choice without recognising the deeper social conditions that shape those behaviours in the first place.
A particularly striking part of the presentation focused on how people respond to these pressures. When individuals feel powerless to change their circumstances, they may turn to coping mechanisms smoking, drinking, or withdrawing from services. These responses are then judged in isolation, rather than understood as part of a wider context. In this way, the system not only fails to address the root causes but can end up reinforcing blame on the individual.
Perhaps the most important insight came when the discussion turned to healthcare itself. Even when services are available, they are not always experienced as safe or trustworthy. Saffron shared research showing that people may avoid seeking help not necessarily because of direct negative experiences, but because of what they have seen and heard about racism more broadly. The perception of risk becomes enough to keep people away.
One example described a woman who, during the COVID period, chose to avoid hospital care entirely. Her decision was shaped by what she had seen in public discourse and online reactions to racial justice movements. It left her feeling that she could not trust how she would be treated. This kind of anticipatory fear of not being treated with dignity or fairness adds another layer of stress to an already difficult situation.
The presentation also challenged the way healthcare systems understand illness. Many services still operate within a narrow biomedical framework, focusing on symptoms and diagnoses while overlooking the social realities that contribute to them. For people from marginalised communities, this can lead to experiences where their perspectives are dismissed or misunderstood. They may try to explain how racism, housing, poverty, or life circumstances have shaped their health, only to find those explanations sidelined.
This is where the concept of “epistemic injustice” becomes important, although Saffron didn’t dwell on jargon, the meaning was clear. It is about whose knowledge counts. When patients and carers are not listened to, or when their experiences are not taken seriously, care becomes something done to them, rather than with them. For many, this is not just frustrating it is re-traumatising.
Professor Saffron also showed a video – Nilaari delivering hope A community mental health provider for people of colour, which you can watch below.
1. “You’ve explained the problems, but what are the solutions?”
Answer: Saffron acknowledged that addressing racism at its root is complex and long-term, but highlighted practical steps:
Services must be co-produced with people who have lived experience
Communities need to be actively involved in decision-making spaces
Grassroots and voluntary organisations should be:
properly funded
meaningfully included in policy and service design
She emphasised that change should be done with communities, not to them, and that learning from effective third-sector approaches is key.
2. “Do you look at drug and alcohol use as part of racism-related issues?”
Answer: Yes, but not in the way systems often frame it.
Saffron explained that:
Substance use is often a response to difficult life experiences, including racism and poverty
Systems tend to treat it as an individual problem, rather than understanding the wider causes
These behaviours can reflect a lack of:
support
options
alternative coping mechanisms
She stressed the importance of shifting away from blame and towards understanding context.
3. “Is trauma-informed care part of the solution?”
Answer: Trauma-informed care is important, but not sufficient on its own.
Saffron highlighted that:
Current models of trauma-informed care can be too narrow
They often fail to fully account for:
systemic racism
structural inequalities
Services also need to recognise that they themselves can contribute to trauma
She suggested that trauma-informed approaches must be:
culturally sensitive
shaped by different communities’ understandings of trauma
4. “What do you mean by ‘racism is a virus’?”
Answer: Saffron used this idea as a metaphor.
She explained that:
Racism spreads and reproduces across society, much like a virus
It moves through:
institutions
policies
social interactions
It grows and reinforces itself over time
At the same time, she used this idea to challenge overly individualised thinking—highlighting that racism is structural, not just personal.
King’s College London: When Crisis Care Comes Too Late presented by Phoebe Averill.
After the earlier discussion on racism and inequality, the presentation from King’s College London brought the conversation into something more immediate what actually happens when someone reaches crisis point and needs urgent mental health support.
Phoebe Averill and her team focused on pathways under the Mental Health Act, but what emerged wasn’t a technical discussion. It was a picture of a system that often struggles at the exact moment it is supposed to respond.
They began by looking at the period just before crisis. In many cases, there are early warning signs. Carers and families notice changes subtle at first, then more obvious. They often try to raise concerns early, hoping intervention might prevent things from escalating. But too often, those early signals are not acted on.
By the time the system responds, the situation has already deteriorated.
The research highlighted that delays are not caused by a single issue, but by a combination of pressures within the system. These include:
shortages in hospital beds
fragmented coordination between services
breakdowns in communication across teams
While these explanations are familiar, the impact of them feels anything but routine. During the waiting period, people do not remain stable. They become more unwell, more distressed, and more at risk. What could have been addressed earlier becomes a crisis that is harder to manage.
One of the most striking parts of the presentation was the focus on what happens in that gap between “something is wrong” and “help arrives.” That space is where much of the pressure shifts onto carers.
Carers described being left to manage situations that are escalating in real time. They are expected to keep someone safe, to monitor behaviour, and to absorb the emotional weight of what is happening all while waiting for services to respond. In some cases, this can last days or even weeks.
This isn’t a formal role, and it’s not one carers are prepared for. It’s something they step into because there is no alternative.
The consequences of these delays don’t end when care finally arrives. By that point, the impact can already be significant. The research pointed to outcomes such as:
worsening mental health leading to longer hospital stays
increased risk of avoidable harm during the waiting period
disruption to housing, employment, and relationships
In other words, the delay itself becomes part of the problem, shaping what happens next.
Another important thread running through the presentation was the role of carers’ knowledge. Carers are often the first to recognise when something is changing. They understand patterns, triggers, and early warning signs in a way that professionals may not see immediately. Yet this insight is not always taken seriously or acted upon.
The result is a system that tends to respond late rather than early intervening at crisis point, rather than preventing it.
The KCL team were clear that their research is trying to address this gap. They spoke about building a lived experience advisory group and involving carers and service users directly in shaping the work. There was a clear intention to move beyond observation and towards something more collaborative, where lived experience informs how the research develops.
At the same time, there was a quiet recognition in the room that much of this is not new. Similar issues have been raised repeatedly over the years. The difference here was not the discovery of the problem, but the clarity of where it sits in that critical moment where response is needed, and the system is slow to act.
Placed alongside the earlier discussion on racism, this presentation added another layer of understanding. It showed how broader inequalities are not abstract—they play out in very real ways at the point of crisis. Where trust is already fragile, delays make it harder to engage. Where carers are already stretched, the system’s response can increase that pressure rather than relieve it.
By the end of the session, one idea stood out clearly: this is not just about whether care is available. It is about whether it comes at the right time, whether the right people are listened to, and whether the system is able to act before situations reach breaking point.
Parliamentary and Health Service Ombudsman: When Accountability Feels Out of Reach
The next presentation of the forum came from the Parliamentary and Health Service Ombudsman team, who joined to explain how carers and families can raise concerns when NHS care goes wrong.
On the surface, this was a session about process how complaints move through the system and when the Ombudsman becomes involved. But as the discussion unfolded, it became clear that this was really about something deeper: whether accountability is genuinely accessible to carers in practice.
The team described their role as an independent body that steps in once local complaints processes have been completed. In theory, the pathway is clear. Before approaching the Ombudsman, people are expected to go through several stages:
raise concerns with the service directly
receive a formal response, often referred to as the “final response letter”
only then escalate the complaint for independent review
What sounds straightforward on paper quickly became more complex when viewed through lived experience.
Carers shared how difficult it can be to even reach that final stage. The process can take months, sometimes longer, and often requires sustained effort just to keep it moving. Following up, chasing responses, and navigating unclear communication becomes part of the experience.
One comment in the chat captured this reality clearly:
“It can be hard to get to the point of getting a final outcome letter… the amount of advocacy and chasing that needs to happen…”
Another highlighted how far removed the process can feel from everyday awareness:
“It takes far more than 12 months to even come into awareness…”
In response, the Ombudsman team acknowledged that delays particularly at the final response stage are common. They explained that in some cases, where delays are extreme, they may contact organisations directly, and they encouraged people to use their helpline for guidance when processes stall.
But even with that support, there was a sense in the room that the system places a significant burden on those trying to access it. By the time someone considers making a complaint, they are often already dealing with the aftermath of a difficult experience. Adding a lengthy and sometimes frustrating process on top of that can feel overwhelming.
The conversation also turned to accessibility. Questions were raised about language, digital access, and the assumptions built into how information is shared. Not everyone engages with systems in the same way, and not everyone finds it easy to navigate written guidance or formal processes.
Participants pointed out that some communities may never reach the complaints stage at all—not because issues don’t exist, but because the pathway itself is difficult to access.
This was reflected in a simple but powerful comment:
“We are assuming that everyone reads…”
There were also wider reflections about how systems could better meet people where they are, including:
making information available in more accessible formats and languages
reaching people through community networks, not just formal channels
Even within this practical discussion, the themes from earlier in the forum remained present. Trust, accessibility, and lived experience all shaped how people understood the complaints process.
Placed alongside the earlier presentations, this session added an important dimension. If the system fails as described in the discussions on racism and crisis care—then the ability to challenge that failure becomes critical. But if the route to accountability is difficult to navigate, many experiences may never be formally recognised.
What emerged was not a rejection of the Ombudsman’s role, but a recognition of the gap between what exists and what is accessible.
Because accountability is not just about having a process in place. It is about whether people can realistically use it especially at a time when they may already be stretched, exhausted, and navigating multiple pressures.
Universal Care Plan and Carer Contingency Planning Update
The final contribution to the forum came from Thomas Ince, introducing the Universal Care Plan often referred to as UCP. After the earlier discussions on racism, crisis care, and accountability, this felt like a shift towards something more practical: what the system is trying to build in response to the gaps carers have been describing.
At its core, the Universal Care Plan is a digital tool designed to allow people to record and share information about their care. It sits within the NHS App and is intended to bring together health, social care, and voluntary services around a shared understanding of a person’s needs and preferences.
Thomas described how the system has evolved over time. It began with a focus on end-of-life care, making sure that a person’s wishes could be accessed quickly by professionals such as ambulance crews. It then expanded into areas like sickle cell crisis planning and is now being extended further to cover a wider range of conditions and situations.
The direction of travel is clear: moving from a professionally controlled system towards something more person-owned, where individuals can enter their own information and shape how their care is understood.
A Tool That Centres “What Matters to You”
One of the key features Thomas highlighted was a section within the plan that allows people to describe themselves in their own words. Rather than being defined only by diagnosis or clinical notes, individuals can record what matters to them information that can then be seen by anyone involved in their care.
In principle, this is a shift towards more personalised and human-centred care. It offers a way to capture context, preferences, and lived experience in a system that often reduces people to categories.
But for this forum, the most significant element was something more specific.
The Carer Contingency Plan
Thomas introduced a feature that immediately resonated with the group: the carer contingency plan.
This allows carers to record what should happen if they are suddenly unable to provide care. For example:
if they become unwell or need urgent medical attention
if there is a sudden change in their circumstances
In those situations, the system can alert professionals to the fact that someone is dependent on that carer and provide information about what support is needed.
For many carers, this addressed a very real and often unspoken concern: what happens to the person they care for if something happens to them?
The idea that this information could be visible across services—rather than held informally or not at all felt like a meaningful step.
From Concept to Reality: The Challenge of Engagement
While the tool itself was broadly welcomed, the discussion quickly moved beyond what it does to how it will actually be used.
Thomas was open about the current stage of development. Although the system is available, it remains largely driven by professionals, with limited public awareness. One of the key aims now is to shift towards wider engagement encouraging people to take ownership of their care plans and input their own information.
This raised an important question in the room: how do you introduce a digital solution into communities where trust in services is already fragile?
Participants pointed out that many people particularly from ethnic minority backgrounds—do not engage easily with primary care systems. If the entry point to the Universal Care Plan is through those same systems, there is a risk that the people who could benefit most may not use it at all.
Suggestions began to emerge organically from the group, reflecting a more community-led approach:
working through carer centres, peer groups, and local networks
engaging cultural organisations and community leaders
using spaces where trust already exists, rather than relying solely on formal channels
There was a clear sense that communication could not be an afterthought. It needed to be built into the design of how the tool is introduced.
Language and Accessibility: A Tension Exposed
One of the most striking moments in this section came when language accessibility was discussed.
At present, the NHS App and therefore the Universal Care Plan is only available in English (and Welsh). Thomas acknowledged that this is a limitation and that while there are conversations about future solutions, no immediate changes are in place.
This prompted a strong reaction from participants. There was frustration that a tool described as “universal” could exclude large sections of the population from the outset. For some, this was not just a technical issue but a reflection of a wider pattern—systems being designed without fully considering the diversity of the communities they serve.
It brought the discussion back to a familiar theme from earlier in the forum: inclusion cannot be added later, it has to be built in from the beginning.
A Step Forward With Conditions
Despite these concerns, there was recognition that the Universal Care Plan has real potential.
The idea of having:
shared, accessible information across services
visibility of carers and their responsibilities
a contingency plan that reduces risk in emergencies
addresses issues that carers have been raising for years.
But the conversation made it clear that the success of the tool will depend on more than its functionality. It will depend on whether people:
know about it
trust it
can access it
and feel that it reflects their needs and realities
Without that, there is a risk that it becomes another well-intentioned solution that doesn’t reach the people it was designed for.
Placing It in the Wider Conversation
Coming at the end of the forum, this presentation connected in an important way to everything that had been discussed earlier.
Where Saffron’s presentation explored the structural roots of inequality, and the KCL research showed how system delays affect people in crisis, the Universal Care Plan represented an attempt however early to respond to those issues in practice.
But it also revealed the ongoing challenge.
Because even when new tools are introduced, they are still shaped by the same system dynamics: questions of trust, access, communication, and inclusion do not disappear they simply take new forms.
The National Ethnic Mental Health Carer Forum is a grassroots group that focuses on addressing the unique challenges ethnic minority carers face in the mental health care system. The forum brings together carers, professionals, and organizations to engage in discussions, share experiences, and advocate for the inclusion of carers’ voices, especially those from minority backgrounds, in mental health policy and practice.
The forum acknowledges the significant role carers play in supporting individuals with mental health issues, especially from ethnic minority communities. It also highlights the issues of systemic and structural racism within the mental health care system and how these issues affect not only patients but also their carers.
I began the discussion by focusing on the importance of anti-racism in the mental health care system, especially as it pertains to ethnic minority carers. I explained that the forum’s main aim was to address the challenges faced by ethnic minority carers in mental health, emphasizing how systemic racism continues to affect these carers and their loved ones.
I highlighted the following key points:
Racism as a Structural Issue:
Racism in mental health care is not just about individual prejudice, but it is deeply embedded in the structure of the system. This includes policies and practices that disproportionately affect ethnic minority communities.
I pointed out that ethnic minority carers face unique challenges in navigating the mental health care system, including being excluded from important discussions about their loved ones’ care. I stressed that carers those who know the patients best often feel their voices are undervalued or completely ignored by mental health professionals.
Racial inequalities manifest in various ways, from higher rates of detention under the Mental Health Act to the overuse of restraint and coercive care practices. These practices disproportionately affect ethnic minority communities, and the role of carers is often marginalized in these processes.
Importance of Carers’ Voices:
I made it clear that carers’ voices must be heard when it comes to anti-racism efforts in mental health services. Carers have the ability to provide crucial context about their loved ones’ needs, especially cultural needs, that clinicians may overlook or misinterpret.
It was crucial to stress that carers are not just supporters of the patient; they are knowledge holders with unique insights into the patient’s condition, behaviors, and needs. Without including them, mental health services risk misunderstanding cultural expressions of distress, leading to misdiagnosis or inappropriate treatment.
Requests for Future Presentations from Prof. Subodh Dave and Ruth:
Greater Focus on Mental Health Policy Reforms:
Attendees requested further discussions on the mental health policy reforms and the steps being taken to ensure that these changes address racial disparities. They expressed interest in hearing more about the impact of recent changes and how policy could be further improved to support ethnic minority communities.
Practical Examples of Anti-Racism Initiatives:
Participants asked for real-world examples of anti-racism initiatives being implemented within mental health services. They wanted to hear about successful case studies where changes have been made and how those changes have positively impacted carers and patients.
Integration of Carers in Mental Health Decision-Making:
There was a strong interest in exploring how carers can be better integrated into decision-making processes at a systemic level. Attendees wanted Prof. Dave and Ruth to discuss strategies to ensure that carers are not just involved in individual care but are included in the larger policy decisions that shape mental health services.
Cultural Competency Training for Professionals:
Attendees suggested that cultural competency training should be a central focus in future discussions. They wanted to understand how mental health professionals are being trained to understand the unique cultural contexts of ethnic minority communities and how this is being addressed through institutional change.
Long-term Strategy for Addressing Racial Disparities:
Attendees requested a long-term strategy for addressing racial disparities in mental health services. They were particularly interested in future initiatives, including how diversity in the workforce and access to care for ethnic minority communities would evolve over time.
Questions Asked During the Discussion:
How can we ensure that mental health professionals take racial disparities seriously?
What role can ethnic minority carers play in tackling systemic racism in mental health services?
What are the next steps in ensuring that ethnic minority carers are involved in mental health policy at every level?
Can you discuss the intersection of race and mental health legislation and how it specifically affects ethnic minority carers?
How can cultural competency training be integrated into everyday practice for mental health professionals?
Presentation by Dr. Patrick Nyikavaranda: Policy, Equity & Carer Engagement
Next up to speak was Dr. Patrick Nyikavaranda is a Senior Research Fellow and the Public Involvement and Engagement Lead at the NIHR Mental Health Policy Research Unit within the Division of Psychiatry at University College London (UCL). His work focuses on improving mental health policy through research that aims to address equity and inclusion in mental health services.
Dr. Nyikavaranda has a strong commitment to engaging carers and patients with lived experience in the research process, ensuring that their voices are central to shaping mental health care policies and creating more equitable services. He is particularly focused on addressing the systemic racial disparities in mental health care and promoting cultural competence among mental health professionals.
Key Points from Dr. Nyikavaranda’s Presentation:
Overview of the Policy Research Unit:
Dr. Nyikavaranda explained the work of the Policy Research Unit in Mental Health, which is focused on generating evidence to influence mental health policy and improve mental health services.
The unit works with a range of stakeholders, including carers, to produce evidence that informs the development of policy aimed at addressing racial disparities and improving care for ethnic minority communities in the mental health system.
Carer Engagement:
A central theme of Dr. Nyikavaranda’s presentation was the importance of involving carers in mental health research and policy. He emphasized that carers are essential partners in the mental health care process and their insights and lived experiences are crucial in shaping equitable services.
Carers’ lived experiences offer unique perspectives on the challenges faced by patients, especially those from ethnic minority backgrounds, and their input is invaluable in creating policies that are more inclusive and culturally competent.
Addressing Equity in Research and Policy:
Dr. Nyikavaranda spoke about the persistent inequities in mental health services, particularly for ethnic minority patients. He discussed the importance of research that focuses on equity, specifically how racial disparities impact access to services, diagnosis, treatment, and outcomes.
He highlighted the need for inclusive research that represents the voices of carers, especially those from underrepresented communities. Engaging carers in the research process ensures that the evidence produced reflects the real-world needs of patients and carers.
After Dr. Nyikavaranda’s presentation, the session continued with a discussion and Q&A where forum participants had the opportunity to ask questions and provide reflections on the topic of policy, equity, and carer engagement in mental health.
Updates from Norfolk and Suffolk Foundation Trust
During the forum representatives from Norfolk and Suffolk Foundation Trust (NSFT), provided updates on the progress made in involving carers, particularly those from ethnic minority backgrounds, in improving mental health services and addressing racial disparities.
The key updates from Norfolk and Suffolk Foundation Trust were as follows:
Carer Engagement:
Norfolk and Suffolk Foundation Trust has made significant strides in engaging carers in the mental health care process. They have created platforms that allow carers to voice their experiences and contribute to the care planning of their loved ones. This is part of a broader effort to embed carers’ perspectives in all levels of service delivery.
The Trust has developed a Carers Charter, which is based on the Triangle of Care framework, ensuring that carers are recognized as equal partners in the care process. This Charter outlines the six key standards for improving the quality of care, including the involvement of carers and recognition of their expertise.
Cultural Sensitivity and Support:
The Trust is working to ensure that mental health services are culturally sensitive and cater to the needs of ethnic minority communities. There is a focus on improving communication between health professionals and carers, particularly in regards to understanding the cultural needs of ethnic minority patients.
The Trust is looking to enhance its support for carers, particularly those from diverse backgrounds, by offering tailored resources and support structures. They are also aiming to create more inclusive spaces for carers to come together and share their experiences and challenges.
Co-Production with Carers:
Norfolk and Suffolk Foundation Trust is adopting a co-production approach, meaning that they are working collaboratively with carers and service users to design and deliver services. This approach allows carers to be actively involved in shaping policies, procedures, and the overall care framework.
Commitment to Tackling Racial Disparities:
The Trust is also committed to tackling racial inequalities in mental health care. They are working to ensure that ethnic minority patients and their carers have access to equitable services. This includes addressing issues such as disproportionate detention rates, increased use of restraint, and the underrepresentation of ethnic minorities in mental health research.
Feedback and Reflection:
Attendees were encouraged to provide feedback on the Trust’s progress, particularly on how well they felt carer voices are being integrated into mental health services. Jodie and Annie invited participants to share their thoughts and experiences to further improve services and strengthen the carer-professional relationship.
This section of the forum underscored the importance of collaborative engagement between mental health services and carers. The updates from Norfolk and Suffolk Foundation Trust highlighted how a carer-centered approach, especially one that includes the voices of ethnic minority carers, can lead to more inclusive, effective, and culturally competent care.
The next presentation was focused on Ethnic Carers and Poetry, with an emphasis on how poetry can be used as a form of expression for ethnic minority carers in mental health. The session was led by Matthew McKenzie, the facilitator of the forum.
Presentation: Ethnic Carers and Poetry
Presenter: Matthew McKenzie
In this presentation, I explored the therapeutic value of poetry in expressing the lived experiences of ethnic minority carers. I emphasized how poetry can serve as a tool to communicate the emotional burden, grief, and frustration that carers often face in mental health settings, particularly when dealing with the added complexities of racism and systemic barriers.
Key Points Covered:
Poetry as a Voice for the Unheard:
I discussed how ethnic minority carers, often feeling invisible within the mental health system, can use poetry to reclaim their voice and assert their lived experiences. Poetry provides a unique space for expression, where carers can share their struggles, advocate for their loved ones, and address the challenges they face in a system that may not always recognize their needs or contributions.
Cultural Expression through Poetry:
Poetry also allows carers to engage with their cultural heritage. For many ethnic minority carers, it serves as a means to reconnect with their traditions, cultural identity, and community. I emphasized that this form of expression can be a powerful way to resist silence and challenge marginalization within both the mental health system and society at large.
A Call for Carers to Share Their Stories:
I presented how important it is for carers to share their own experiences through poetry, noting that their personal stories could be transformative not just for them, but for others who face similar struggles. The opportunity to contribute their voices to the forum’s upcoming poetry collection titled “Unpaid, Unseen, Yet Unbroken” was presented as a way for carers to gain recognition and contribute to the ongoing dialogue on mental health and anti-racism.
Poetry as Protest and Healing:
Poetry was described as not just a form of personal expression, but also a form of protest against the invisibility and marginalization that ethnic minority carers often face in the mental health system. It was highlighted as a means to challenge institutionalized racism and raise awareness about the specific barriers faced by carers from ethnic minority backgrounds.
Invitation for Future Submissions:
As part of an ongoing initiative, I encouraged carers to submit their poems for inclusion in the collection. The goal was to amplify their voices, giving them an opportunity to be heard and to showcase the power of cultural expression in advocating for change.
This presentation marked an important moment in the forum, as it not only provided a space for reflection and emotional expression but also offered carers a creative outlet for advocacy and empowerment. By using poetry, carers could challenge the norms, raise awareness about the struggles they face, and ultimately drive systemic change within the mental health system.
A Caring Mind 