Black unpaid carers can face significant barriers when trying to access mental health support for themselves or the person they care for.
These difficulties may include long waiting times, financial pressure, cultural stigma, fear of statutory services and a shortage of professionals who understand the effects of racism, racial trauma and culturally specific caring experiences.
In my new video, I examine how misdiagnosis, over-policing and expectations that Black families should simply remain “strong” can create mistrust and discourage carers from asking for help.
Drawing on my perspective as a Black lived-experience carer, I also consider what mental health services can do differently. Genuine improvement requires culturally responsive support, greater representation, safe spaces for carers, accessible community-led services and meaningful partnership with Black carers and families.
PCREF provides an important opportunity to challenge racial inequalities, but its success will depend on whether services listen to lived experience and turn commitments into visible action.
By Matthew McKenzie – Cygnet PCREF Carer Lead & Carer Ambassador
Cygnet PCREF Carer Lead & Carer Ambassador
On 4 August 2026, unpaid carers, professionals and people with lived experience came together at Cygnet Churchill for the second Voices & Verses Carers Poetry Event. The purpose of the afternoon was not simply to read poetry, but to create a safe space where carers could express experiences that are often overlooked within mental health services.
The event formed part of Cygnet’s ongoing commitment to the Patient and Carer Race Equality Framework (PCREF) by exploring how creativity, culture and storytelling can strengthen co-production and improve relationships between carers and services. The afternoon was designed around inclusion, psychological safety and optional participation, allowing people to contribute in whatever way felt comfortable to them.
As someone who has cared for family members affected by severe mental illness for many years, I continue to believe that poetry allows carers to communicate emotions that ordinary conversations often fail to capture. Statistics tell us what is happening, but poetry often explains how it feels. This aligns closely with PCREF’s ambition to humanise care, improve understanding of racial inequalities and ensure lived experience genuinely influences service development.
The event opened with readings from my forthcoming collection of PCREF poems, including “Change is Possible.” Rather than focusing solely on racism, the discussion explored hope, community, partnership, co-production and carers becoming recognised as equal partners within mental health care. Participants reflected that although change often feels slow, meaningful progress can still occur when carers are given opportunities to influence services.
One participant commented that the poem should never have needed to exist because carers should already be recognised and listened to. Another reflected that the line “those doors open slowly” accurately described the experience of advocating for loved ones over many years. These discussions reminded everyone that poetry can stimulate conversations which may never emerge during formal meetings or consultations.
One of the highlights of the afternoon was a collaborative workshop led by Jo Lambert, introducing participants to the Hold the Hope project through art, colour and reflection.
Rather than asking carers to simply colour a picture, participants were encouraged to think about what hope, equality, dignity and belonging meant to them personally. They selected PCREF-related words, explored why particular colours reflected their emotions and discussed how creativity can communicate experiences beyond spoken language.
The discussion demonstrated that every participant interpreted the same image differently.
Some chose calming blues to represent peace and trust.
Others used brighter colours to symbolise recovery, resilience and optimism.
Several carers explained that colouring became a form of mindfulness, allowing them to process difficult emotions whilst talking with others.
The activity also highlighted something particularly important from a lived experience perspective. Mental health carers frequently spend years speaking on behalf of others. Opportunities to express their own feelings are much rarer. Through art and poetry, carers were able to focus on themselves without feeling they had to justify or defend their experiences.
This reinforced one of the strongest messages of the day:
Creative expression is not simply an enjoyable activity, it is another form of lived experience evidence.
Participants also appreciated that there were no “right” or “wrong” answers. Every artwork reflected an individual caring journey, demonstrating the diversity that exists within the unpaid carer community.
The power of shared lived experience
Perhaps the most valuable aspect of the event was the conversation that developed naturally between carers.
Discussions moved beyond poetry into themes including:
feeling excluded because of confidentiality
racial inequality within services
the emotional burden of long-term caring
recognition of carers as equal partners
loss of identity through caring
maintaining hope during crisis
the importance of community support
Many participants reflected that carers often possess significant practical knowledge but are still not viewed as equal partners within clinical decision making.
One participant explained that carers are frequently expected to educate professionals whilst simultaneously managing the emotional impact of supporting someone in crisis. Others spoke about the exhaustion of constantly advocating for loved ones whilst trying to maintain their own wellbeing.
These conversations demonstrated exactly why creative events have an important place within PCREF. Rather than collecting another questionnaire, participants were able to describe experiences in their own words, using poetry, storytelling and discussion.
Importantly, professionals attending the session also listened.
This helped create genuine dialogue rather than the traditional model where professionals ask questions and carers provide short answers.
The atmosphere remained respectful throughout, allowing difficult topics including racism, discrimination and feeling unheard to be explored constructively.
For many attendees, simply meeting other carers who understood their experiences reduced feelings of isolation.
Celebrating culture and creativity
The second half of the afternoon celebrated cultural diversity through music, spoken word and performance.
Faith shared “Soothing Blue,” a poem that had been transformed into music. Hearing lived experience expressed through song demonstrated another creative way carers can communicate emotions that may otherwise remain hidden. Participants reflected on themes of healing, identity and rediscovering themselves beyond their caring role.
Brenda then performed traditional Jamaican folk songs, including “Chi-Chi Bud Oh” and “By the Rivers of Babylon.” These performances reminded everyone that culture forms an important part of identity and wellbeing. Cultural expression can strengthen belonging and create opportunities for people from different backgrounds to learn from one another.
The PCREF word search and poetry activity further encouraged participants to explore words such as community, dignity, inclusion, hope, equality and compassion before creating short poems of their own. What initially appeared to be a simple puzzle became another opportunity for reflection and discussion.
Throughout the afternoon there was laughter, encouragement and mutual support. Participants applauded one another’s contributions regardless of previous poetry experience, reinforcing that everyone had something valuable to contribute.
By combining poetry, visual art, music and conversation, the event demonstrated that creativity can become a powerful vehicle for engagement with carers who may not usually participate in traditional consultation events.
Reflections and looking ahead
Looking back as both a lived experience carer and PCREF Carer Lead, I believe this event demonstrated several important lessons.
Firstly, carers do not simply want to be consulted, they want to be heard.
Secondly, creative approaches allow conversations to emerge that formal meetings often miss.
Thirdly, culture matters. When people feel safe enough to bring their whole identity into a room, discussions become richer, more authentic and more meaningful.
The Voices & Verses programme is gradually becoming more than a poetry group. It is developing into a community where carers can connect, learn from one another and influence future mental health services through creativity.
Future events will continue to develop this approach by:
expanding hybrid participation so more carers can join remotely;
increasing opportunities for cultural storytelling;
creating more collaborative art and poetry projects;
transforming poems into music and other creative media;
strengthening links between PCREF, Triangle of Care and co-production.
Most importantly, the event reminded us that lived experience should never be viewed as an optional extra.
Every poem, every conversation and every shared story represented expertise developed through years of caring.
PCREF asks organisations to listen more carefully to diverse communities.
This event showed that when carers are given the right environment, they do not simply speak—they inspire, educate and help shape better mental health services for everyone.
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.
By Matthew McKenzie – Triangle of Care – Community group chair
Putting Carers at the Centre of Care
The latest Triangle of Care Community Group brought together carers, professionals and partner organisations from across England to share learning, celebrate progress and identify where further improvements are needed. The meeting highlighted the growing influence of the Triangle of Care across mental health and acute services, whilst reinforcing that there is still much work to do to ensure carers are consistently recognised, valued and supported.
One of the most powerful aspects of the meeting was hearing directly from carers about their experiences. Whilst many spoke positively about the progress that has been made over recent years, there was a shared view that carer involvement remains inconsistent across services. Carers described feeling more included than ever before, with greater awareness of the Triangle of Care principles and more opportunities to participate in steering groups, service developments and community discussions. However, concerns remain around automatic carer identification, information sharing and ensuring that carers are genuinely recognised as partners in care.
Several carers reflected on the importance of having their voices heard early in a patient’s care journey. Examples were shared of services introducing carer contribution templates that ensure family members are involved within 72 hours of admission, whilst others highlighted improvements to confidentiality processes that allow patients to determine what information can be shared with carers at different stages of their recovery. These practical changes demonstrate how relatively small adjustments can have a significant impact on relationships between carers, patients and professionals.
Progress Across the Triangle of Care Programme
Mary Patel, Triangle of Care Programme Lead at Carers Trust, provided an update on developments across the national programme. The Triangle of Care continues to grow, with a number of organisations progressing through the STAR accreditation process and demonstrating their commitment to embedding carer-inclusive practice across services.
Importantly, members were reminded that the STAR awards are not designed to rank organisations, but instead reflect the breadth of implementation across different service areas. STAR I focuses primarily on inpatient and crisis services, STAR II expands into community services, whilst STAR III recognises organisations delivering integrated services across multiple clinical areas.
Several trusts have recently achieved STAR awards, whilst others are progressing through the assessment process over the coming months. The programme’s peer review approach continues to ensure that carers remain central to the assessment process, with carers actively involved in reviewing evidence, identifying good practice and making recommendations for future development.
The Triangle of Care Member Hub continues to provide valuable opportunities for peer learning, resource sharing and collaborative working. Upcoming webinars will include sessions exploring Open Dialogue approaches developed by Devon Partnership NHS Trust, providing members with further opportunities to learn about therapeutic models that place families and carers at the heart of care planning.
Advancing Equality Through the Patient and Carer Race Equality Framework
A significant development announced during the meeting was the launch of Phase Two of the Triangle of Care and Patient and Carer Race Equality Framework (PCREF) project.
PCREF represents the first mandatory anti-racism framework within mental health services in England. Recognising that carers from racially marginalised communities often experience poorer outcomes and face additional barriers when accessing support, the Triangle of Care programme has been working collaboratively with carers and mental health providers to strengthen the way services assess and respond to carers’ needs.
The revised self-assessment framework encourages services to move beyond assumptions and adopt a more professionally curious approach to understanding carers’ individual experiences. Rather than viewing carers as a homogenous group, the framework recognises that caring experiences are shaped by culture, identity, language, personal circumstances and wider health inequalities.
Pilot sites from across England are now testing the revised guidance, with learning being shared nationally throughout the project. Importantly, organisations do not need to be participating in the pilot to begin implementing the principles and learning that emerge from this work.
Alongside PCREF, Carers Trust continues to contribute to national policy developments, including the Modern Service Framework for Severe Mental Illness and the forthcoming Mental Health Strategy for England. Throughout these discussions, there has been a consistent message that carers must be recognised as partners in care and have access to appropriate support in their own right.
Confidentiality, Information Sharing and Carer Inclusion
Confidentiality remained one of the most prominent themes throughout the meeting. Whilst participants acknowledged the importance of protecting patients’ rights and preferences, carers highlighted that confidentiality can sometimes become a barrier to meaningful engagement.
Several contributors reflected that confidentiality should never prevent professionals from listening to carers’ concerns or receiving valuable information that may support a patient’s care. Others spoke about the importance of revisiting conversations around consent over time, recognising that patients’ preferences may change as their circumstances and wellbeing improve.
Practical examples of good practice included breaking confidentiality discussions down into specific areas, allowing patients to decide what information can be shared about medication, activities, wellbeing and treatment plans, rather than relying on simple ‘yes or no’ decisions. There was also discussion around the importance of staff training to improve confidence when navigating complex conversations around confidentiality and information sharing.
Participants agreed that carers should never be expected to provide significant levels of support without receiving the information necessary to do so safely and effectively. Achieving the right balance between confidentiality and partnership working remains an important priority for the Triangle of Care community.
Triangle of Care Principles Within Acute Services
The meeting concluded with an inspiring presentation from Wendy Doyle, Head of Patient Experience at St George’s University Hospitals NHS Foundation Trust and Epsom and St Helier Hospitals, exploring how Triangle of Care principles can be successfully implemented within acute hospital settings.
Whilst the Triangle of Care originated within mental health services, Wendy demonstrated that its principles are equally applicable across acute care environments. Her organisation supports approximately 19,000 members of staff across multiple hospital sites and has developed a comprehensive approach to identifying, recording and supporting unpaid carers.
Staff are encouraged to identify carers at the earliest possible opportunity, with this information recorded within patient records to ensure continuity throughout the patient’s hospital journey. Comprehensive carer awareness training is delivered through virtual sessions, ward-based education and e-learning resources, helping staff understand both the practical and emotional importance of recognising carers.
Importantly, identifying carers is only the beginning of the process. Every carer recorded within the hospital system receives a follow-up wellbeing check from the Patient Experience Team to discuss their own support needs, identify any challenges and facilitate referrals to local carers’ organisations where appropriate.
Partnership working sits at the heart of this approach, with close collaboration between acute services and local carers’ centres ensuring carers can access a broad range of practical and emotional support. Adult and Young Carers’ Charters have also been co-produced with carers themselves, helping to shape organisational commitments around kindness, inclusion and meaningful engagement.
Perhaps most importantly, Wendy highlighted that supporting carers improves outcomes for everyone. Better communication strengthens discharge planning, reduces avoidable hospital admissions and readmissions, improves patient safety and helps prevent carer burnout. Acute hospital stays can provide valuable opportunities to identify carers who may previously have remained invisible and connect them with longer-term support.
Looking Ahead
The discussions throughout the meeting demonstrated both the progress that has been made and the challenges that remain. There is increasing recognition that carers are essential partners in delivering high-quality care across both mental health and acute services. However, meaningful involvement cannot rely upon individual goodwill alone; it requires consistent systems, robust policies and a genuine commitment to partnership working.
Looking ahead, the Triangle of Care programme will continue to expand opportunities for peer learning, influence national policy developments and support organisations to embed carer-inclusive practices across services. The ongoing work around PCREF and wider mental health policy developments provide important opportunities to ensure that carers’ voices remain central to future service transformation.
Above all, the meeting reinforced a simple but powerful message: carers must not be viewed as an afterthought or an optional addition to care planning. They are experts through experience, invaluable partners in care and individuals with support needs of their own. When carers are identified early, listened to meaningfully and supported appropriately, outcomes improve not only for carers themselves, but for patients, families and services alike.
The Triangle of Care Community Group continues to provide an important space where carers and professionals can learn from one another, challenge existing practices and work collectively towards more compassionate, inclusive and effective care.
If you weren’t able to join our June South London Mental Health Carers Group meeting, here’s a summary of the main discussions and updates. As always, the meeting brought together unpaid carers from across Lambeth, Lewisham, Southwark and Croydon to share experiences, raise concerns and keep each other informed about developments affecting mental health carers.
Why these meetings matter
One of the strongest themes throughout the meeting was the importance of carers staying connected. Many carers cannot attend every committee or involvement meeting due to their caring responsibilities, work or other commitments. By sharing updates, we can help ensure everyone remains informed about changes that may affect them and the people they support.
Several carers commented that services sometimes feel like they are “reinventing the wheel”, with the same issues being raised repeatedly. While progress can be slow, continuing to speak up and share experiences remains essential.
Updates from the Maudsley Family and Carers Committee
Carers who attended the latest South London and Maudsley (SLAM) Family and Carers Committee shared several important developments.
Review of the Involvement Register
SLAM is reviewing its Involvement Register over the coming months. Working groups will look at areas including:
Outcomes
How involvement is delivered
Governance and policy
Carers interested in influencing how services engage with families are encouraged to consider joining the register. Participation is flexible, allowing carers to contribute when they are able.
Triangle of Care
The Triangle of Care continues to be a significant focus, particularly around how carers are identified, involved and supported during someone’s mental health care.
Discussions also covered how Trusts monitor their progress and how carers’ details are recorded to ensure families receive appropriate information and support.
Information for carers
Work is continuing to improve the information provided to carers. Rather than relying on a single handbook that can quickly become outdated, there are plans to develop more flexible information resources that can be updated more easily and provided when carers actually need them.
Mental Health Act reforms
A significant part of the meeting focused on the recent changes to the Mental Health Act and what they could mean for unpaid carers.
Key topics included:
Greater emphasis on patient choice and involvement.
The introduction of the Nominated Person, replacing the traditional “Nearest Relative” in many situations.
The importance of Advance Choice Documents, allowing people to record their wishes while they are well.
The need for carers to understand their legal rights and ask questions during admissions, treatment planning and discharge.
Carers discussed both the opportunities and concerns arising from these changes, particularly where someone may lose insight during periods of illness. There was broad agreement that carers need clear information about how the reforms will be implemented locally and how families will continue to be involved.
Advocacy and complaints
Members shared experiences of trying to access advocacy services and navigate complaints processes.
Concerns included:
Limited access to independent mental health advocacy in some boroughs.
Unclear complaints pathways.
The need for carers to be listened to, even when confidential information cannot be shared with them.
The importance of raising concerns through appropriate safeguarding and governance routes where necessary.
Several carers also shared positive experiences where persistence had led to improvements in care.
Local updates from across South London
One of the strengths of the South London Mental Health Carers Group is the opportunity for carers from different boroughs to share what is happening locally. While each area faces its own challenges, many of the issues raised were common across South London.
Lambeth
Carers discussed the continuing work of the Lambeth Living Well Collaborative, which brings together carers, service users, voluntary organisations and professionals to improve local mental health services. Members were reminded that carers are welcome to attend collaborative meetings and contribute to discussions about service improvements.
The conversation also recognised the wider pressures affecting carers beyond mental health services. Rising living costs, reductions in council tax support for many working-age residents receiving benefits, and the increasing financial pressures on families continue to affect carers’ wellbeing. These wider social issues inevitably have an impact on people’s ability to sustain their caring role.
Lewisham
Carers provided an update on Lewisham’s Community Mental Health Transformation programme. While work continues to redesign community services, concerns remain about what happens when someone is discharged from specialist mental health services back to primary care.
Several carers highlighted unanswered questions around:
How GPs will be supported to manage people with ongoing severe mental health needs.
What support carers can expect once specialist services are no longer involved.
Whether communication between secondary mental health services and GP practices is sufficiently robust.
These are important questions that carers hope local services will continue to address as transformation plans progress.
Croydon and Lewisham carer information
Members also heard that new information resources for carers are being developed in Croydon and Lewisham. Rather than relying on lengthy booklets, services are creating a series of practical information sheets covering different aspects of mental health care. This approach should allow information to be updated more regularly and provided when carers need it most.
Carers welcomed this change, noting that people often need specific information at different stages of their caring journey rather than receiving a large handbook all at once.
The important role of GP practices
An interesting discussion focused on the role of GP practices in supporting unpaid carers.
Members recognised that experiences vary considerably between surgeries. Some GP practices have developed strong support for carers, while others still have some way to go.
One positive example shared was Wells Park Practice, where carers have become actively involved in developing support, including helping to establish a regular carers’ coffee morning. This demonstrates what can be achieved when GP practices actively engage with carers and recognise the valuable role they play.
The meeting reinforced several practical messages for carers:
Make sure your GP practice knows that you are an unpaid carer and ask to be recorded on their carers register.
Ask what support your surgery offers to carers, including health checks, referrals or local support groups.
If your current practice offers limited support for carers, it may be worth exploring what neighbouring GP practices provide, particularly if they have developed a stronger carers programme.
As community mental health services increasingly work alongside primary care, ensuring that GP practices recognise and support unpaid carers is becoming more important than ever.
Learning from each other
Perhaps the most valuable part of the local updates was hearing how carers are finding solutions in different boroughs. Good practice in one area can often inspire improvements elsewhere.
Whether discussing carers’ information, community transformation, GP engagement or involvement opportunities, the message was clear: carers’ experiences are a vital source of learning, and sharing those experiences helps improve services across South London as a whole.
Looking ahead
One of the biggest messages from the meeting was that carers have valuable lived experience that services need to hear. Whether through local carers’ centres, involvement registers, Trust committees or community groups, every contribution helps shape future services.
If you are interested in becoming more involved but can only contribute occasionally, don’t let that put you off. Many opportunities allow carers to participate as much or as little as their circumstances allow.
Thank you to everyone who attended and contributed so openly. Your experiences continue to help improve understanding and influence services across South London.
We look forward to welcoming both new and returning carers to our next meeting.
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.
On Saturday, 25th April 2026, the Lewisham Independent Advisory Group (IAG) hosted its much-anticipated Black Mental Health Conference at Goldsmiths, University of London, in New Cross, London.
The event ran from 1 PM to 4 PM, bringing together community members, mental health practitioners, activists, and service users for an afternoon of learning, discussion, and networking focused on Black mental health.
Setting the Stage
Upon arrival, attendees were welcomed with a vibrant program booklet and a series of informational stalls showcasing local initiatives and mental health support services.
I hosted the “Triangle of Care / Carers UK” stall, which covered support for mental health carers and referial information for carer support.
These stalls featured a wide range of organizations including SLAM, Kawaida Therapy, Families and Communities, and Mindful Mums, providing both resources and opportunities for engagement. The atmosphere was energetic and welcoming, reflecting the conference’s mission of care, connection, and community change.
List of stall holders at the conference
Lewisham Independent Advisory Group (IAG) – SLAM PCREF & N2C pilots, community engagement initiatives.
Coco Collective – Blood pressure checks and health equity support through an Italian community clinic.
NTCG Lee – BeWell Hub – Mental health support: first aid, signposting, ethnic minority therapy referrals, DWP guidance.
London Fire Service – Provides community safety advice.
Alzheimer’s Society – Support for people with Alzheimer’s and carers, including PCREF / OA partner initiatives.
Age UK – Lewisham & MacMillan – Cancer champion services and social prescribing support (PCREF / OA partner).
IMAGO – Lewisham unpaid carers support.
Triangle of Care – Carer peer mental health support.
Occipital Growth CIC – Wellbeing pop-up services.
S.I.R.G. / Walking Men’s Group – School support and men’s mental health & wellbeing programs.
BASCA Reminiscence – Showcases reminiscence activities and cultural preservation.
Caremark Care Services – Provides care home services.
RMUK (Rastafari Movement UK) – Focused on tackling food injustice, social isolation, and health inequalities.
In One Piece – Hypnotherapy and career pathways for neurodiverse children.
South-East London Mind – Mindful Mum’s – Wellbeing group for mothers.
Lois Project Women’s Health Education Network – Women’s health education programs.
Red Ribbon Living Well Project – HIV wellbeing and support.
LBVN (Lewisham Black Voluntary Network) – Independent network of Black charitable service leaders and social entrepreneurs.
Families in Harmony – Kinship care support services.
Main conference section
The conference was opened by Lloyd Curtis, the MC for the day, who set the tone for an engaging and informative session. Following the introduction, IAG Chairs Michelle Nembhard and Stephen Lawrence presented the work of Lewisham IAG, highlighting their ongoing commitment to addressing disparities in mental health support for the Black community.
Key Sessions and Presentations
The program included several impactful sessions:
Maudsley Charity Update – Alice Casey from the Maudsley Charity delivered an overview of their programs, emphasizing community support and collaboration with local services.
SLAM Anti-Racism Training – Simone Garrison and Jide Ashimi facilitated a session on the delivery of anti-racism training within mental health services, highlighting systemic challenges and practical strategies.
Intercultural Therapeutic Services & LBVN – Beverley Weston and Susan Rowe explored intercultural approaches to therapy, focusing on culturally sensitive practices in mental health care.
A Service Users’ Journey – Katrina Desportes shared insights into the lived experiences of mental health service users, emphasizing the importance of understanding patient perspectives.
Keynote Address: Dr Malcolm Phillips – Kawaida Therapy – Dr Phillips delivered a compelling keynote, exploring strategies for supporting Black mental health, drawing on decades of experience in therapy and community engagement.
Panel Discussion – The conference concluded with a panel discussion featuring Dr Malcolm Phillips, Ade Odunlade, Katrina Desportes, Simone Garrison, Jide Ashimi, and Susan Rowe, providing a platform for dialogue and Q&A with attendees. This interactive session allowed for rich exchanges on best practices, policy challenges, and community-based solutions.
Networking and Community Engagement
After the formal sessions, the event transitioned to food and networking until 4:45 PM, providing attendees an informal space to connect with speakers, organizers, and service providers. The array of stalls allowed participants to take resources, engage with local initiatives, and explore volunteer and support opportunities.
Resources and Takeaways
Attendees left with valuable resources including:
Program booklets detailing session schedules and speaker bios.
Information on local mental health services and community organizations.
Contacts for advocacy, volunteering, and further training.
The conference highlighted the critical importance of community-driven approaches to Black mental health, emphasizing collaboration between service users, charities, and health professionals.
Absolutely! Let’s expand each key session with a more detailed, immersive narrative, based on what attendees experienced, including content, atmosphere, and insights shared. I’ll focus on the sessions you specifically attended, as reflected in the program.
The conference opened with an engaging presentation by Alice Casey from the Maudsley Charity. She provided attendees with a detailed overview of the charity’s initiatives to support mental health within the community, emphasizing collaborative approaches with local organizations.
Alice highlighted key programs, including outreach work for young Black adults, peer mentoring schemes, and community workshops aimed at reducing stigma around mental health. The presentation included personal stories from beneficiaries, which brought an emotional and relatable dimension to the discussion. Attendees appreciated the practical advice on accessing support services and the emphasis on culturally responsive care.
The room was attentive and responsive, with many participants asking thoughtful questions about how local services can be adapted to better meet the needs of diverse communities. This session set the tone for the day: action-oriented, community-centered, and deeply reflective of lived experiences.
2. SLAM Anti-Racism Training Delivery – Simone Garrison & Jide Ashimi (1:35 PM – 1:55 PM)
Next, Simone Garrison and Jide Ashimi led an interactive session on anti-racism training within mental health services. This session was highly participatory, with attendees invited to engage in discussion and reflect on their own experiences of race, discrimination, and systemic barriers.
The presenters outlined how structural racism affects mental health outcomes for Black communities and shared the SLAM model for anti-racism training. This included:
Identifying bias in clinical settings
Implementing inclusive language and practices
Encouraging allyship and peer accountability
One impactful moment was a case study exploring a young Black patient navigating mental health services. Attendees were prompted to consider interventions from multiple perspectives, sparking a dynamic discussion about equity and accessibility. Many participants noted that the session provided practical strategies for advocating within organizations, alongside the theoretical understanding of systemic inequities.
Following this, Beverley Weston and Susan Rowe from the Intercultural Therapeutic Services and Lewisham Black Voluntary Network (LBVN) presented a session focused on culturally adapted therapeutic approaches.
They emphasized the importance of recognizing cultural context in therapy, including family dynamics, faith, and community networks. Key highlights included:
Techniques for building trust with clients from diverse backgrounds
Examples of successful community-led interventions
Strategies for bridging gaps between statutory services and local Black-led organizations
The session included audience reflections on how cultural awareness can improve engagement, reduce dropouts, and foster sustainable mental health outcomes. Participants were particularly struck by the emphasis on strength-based approaches, focusing on resilience and community assets rather than deficits.
4. interview with the Interim CEO of SLAM (2:15 PM – 2:30 PM)
This session featured an interview with the Interim CEO Ade Odunlade of (South London and Maudsley NHS Foundation Trust), who spoke about:
Organizational vision for equitable mental health services
Current initiatives addressing disparities in care for Black communities
Collaborations with local groups, including Lewisham IAG and other voluntary networks
Commitment to anti-racism training and cultural competency across SLAM services
The interview was informal but informative, giving attendees a direct perspective on how policy and leadership decisions impact service delivery, especially in Black mental health provision. Participants had the opportunity to ask questions and engage with strategic priorities, bridging high-level management insight with the practical experiences discussed in other sessions
5. A Service Users’ Journey – Katrina Desportes (2:35 PM – 2:45 PM)
Katrina Desportes delivered a deeply personal session, sharing her journey as a service user navigating mental health systems. This session was emotionally resonant, offering first-hand insights into the challenges and triumphs of accessing support as a Black individual.
Katrina spoke about the importance of empathy, clear communication, and patient-centered care, illustrating the human impact behind policies and procedures. She also highlighted barriers such as:
Misdiagnosis and underrepresentation in mental health services
The impact of stigma within families and communities
Limited culturally specific support
Attendees responded with empathy and engagement, asking questions about how systems can better integrate service user feedback and what steps can be taken to empower marginalized voices in decision-making processes.
6. Keynote Address: Dr Malcolm Phillips – Kawaida Therapy (2:55 PM – 3:30 PM)
The day’s keynote by Dr Malcolm Phillips was a highlight, delivering a rich discussion on therapeutic practices that support Black mental health. Dr Phillips drew from his extensive experience with Kawaida Therapy, emphasizing holistic, culturally grounded approaches.
Key takeaways included:
The significance of community-driven therapy models
Integrating African-centered philosophies and traditions into mental health care
Addressing intergenerational trauma and systemic inequalities in healthcare
Dr Phillips used case examples, including stories of young people and families, to illustrate practical techniques and the positive outcomes of culturally aware therapy. The audience was deeply engaged, and the session included interactive Q&A, allowing participants to explore issues like accessibility, stigma, and collaborative interventions.
The conference concluded with a dynamic panel discussion, bringing together speakers from the day to reflect on key themes. The panel tackled questions such as:
How can mental health services better serve Black communities?
What role does community advocacy play in systemic change?
How can lived experience inform service design and delivery?
Panelists emphasized intersectional approaches, acknowledging the compounding effects of race, gender, socioeconomic status, and historical inequities. The discussion was lively and reflective, providing actionable insights for both practitioners and community members.
Reflection
Attending these sessions offered a deep, multifaceted understanding of Black mental health, blending theory, practice, and lived experience. Participants left with:
Practical strategies for culturally competent care
Greater awareness of systemic barriers and solutions
Inspiration to engage with their communities and advocate for equity
The conference successfully balanced education, empowerment, and practical application, making it a landmark event for mental health advocacy in Lewisham.
Conclusion
The Lewisham IAG Black Mental Health Conference successfully combined education, advocacy, and community engagement, creating a meaningful space for dialogue and connection. The event demonstrated that supporting mental health in Black communities requires both systemic change and grassroots collaboration a mission that Lewisham IAG continues to champion.
I feel Unpaid carers play a vital role in supporting loved ones experiencing mental health challenges. Much of this caring happens quietly in homes, during sleepless nights, through appointments, advocacy, and everyday acts of protection and support.
For many carers from minority communities, this experiences also includes navigating the cultural understanding, language differences, and systems that sometimes do not always recognise or reflect communities. Despite the knowledge carers hold, I feel our voices can sometimes feel overlooked in those decisions about care.
I recently wrote and recorded a short spoken word poem titled “Nothing About Us Without Us.” This poem reflects a simple and important message: carers bring lived experience that should be included in conversations about mental health services.
The poem is taken from the book I am developing called “Unpaid, Unseen and Yet Unbroken”
Carers are not just supporters in the background. Carers can carry knowledge shaped by lived reality by caring, advocating, and supporting our families through complex systems.
The poem also speaks to the importance of co-production. When carers, communities, and professionals work together, services can become more understanding and culturally responsive, and equitable.
I think this message is especially relevant to ongoing work around the Patient and Carer Race Equality Framework (PCREF), which encourages meaningful involvement of people with lived experience in shaping mental health services.
The poem is a small creative contribution to that conversation. It invites us to reflect on a few simple questions:
Are carers from different backgrounds being listened to?
Are those lived experiences shaping services?
Are decisions being made with carers, not about them?
Listening to carers is not just a gesture of inclusion it can lead to better understanding, stronger partnerships, and better care.
If you would like to watch the poem, you can find the video here:
I hope my poem encourages reflection and conversation about how we can continue building services with communities, and not just for them.
The Patient and Carer Race Equality Framework (PCREF) is a landmark policy designed to improve racial equity in NHS mental health care. But if it’s going to deliver meaningful change, one key voice must be placed at its centre: the carer.
Watch the video
Putting the “C” (Carer) into PCREF
In this vlog, I explore why unpaid ethnic minority carers — who are often the backbone of support for people with mental health needs — are still too often excluded from decision-making, planning, and implementation in services designed to support both them and their loved ones
A Shared Movement
Integrating PCREF and Triangle of Care is a commitment to transforming relationships in mental health care.
Carers are not just an add-on. They are central to safe, equitable, and culturally competent services.
Watch the video above, share your thoughts, and join the conversation.
By Matthew McKenzie, A Caring Mind (Carers UK Ambassador)
As an unpaid mental health carer, I have spent years navigating hospital corridors, GP practices, care plans, juggling crises, and long silences where carers are too often left out. I am sure unpaid carers are expected to hold families together, while notice early warning signs, and keep loved ones safe. Still I always mention most of us receive no formal training, and our knowledge is rarely recognised as expertise.
That is why recently teaching a module for the Masters course to mental health nursing students at King’s College London felt so important. Not after they qualify. Not once they are overwhelmed in practice. But before they step out into the field. The session took place 15th of January.
Why carer-led teaching matters
Unpaid carers sit at the sharp edge of the mental health system. We see what works, what harms, and what gets missed when professionals don’t fully understand the family context. When students hear directly from carers, learning moves beyond textbooks into real life into the emotional, practical, and ethical realities of care.
Training mental health professionals without carer voices is like teaching navigation without a map.
What I taught: lived experience as learning
The session I delivered was built entirely from a carer’s perspective and centred on one core message: you cannot deliver effective mental health care without working with carers.
The module covered:
My lived experience as an unpaid mental health carer How I became a carer, the emotional impact, the daily responsibilities, and the toll caring can take on mental and physical health.
The hidden impact on carers Burnout, stigma, isolation, guilt, and the reality that many carers are supporting professionals while receiving little support themselves.
Carers as partners, not problems Exploring what happens when carers are ignored – and how outcomes improve when they are listened to, informed, and included.
The Triangle of Care A strong emphasis on the Triangle of Care framework: the partnership between service user, carer, and professional. I challenged students to see carers as a vital link in the chain, not an optional extra.
Carers UK and carer identification Highlighting the role of Carers UK in advocacy, rights, resources, and why professionals must help carers identify themselves early so they can access support.
Practical skills for future nurses Listening without defensiveness, sharing information appropriately, involving carers in care planning, and understanding when carers need support themselves.
Interactive discussion and reflection Students worked through real-life scenarios, asking: What would I do differently now that I understand the carer experience?
The shift we need in education
Most unpaid carers are not trained for their role. We learn through crisis, exhaustion, and trial and error. Mental health professionals, however, are trained, which means universities have a responsibility to ensure that training includes those of us living this reality every day.
Carer-led teaching builds empathy, improves communication, and ultimately leads to safer, more effective care. When students learn early that carers matter, they carry that mindset into practice.
A final thought
Unpaid carers are already part of the mental health workforce, it’s just the title unpaid, unsupported, and often unheard. So I feel bringing carers into universities is not a “nice extra”. It is absolutely essential.
If we want a mental health system that truly works, we must start by listening to those who never clock off.
A Caring Mind 